Finding my way through Motherhood

Cloth diapering

2009-05-21T15:48:00.001-07:00

Well, we are full swing into cloth diapering and loving it!. My newest favorite diapers are Gro-Baby. They fit well, and are easy to adjust for different babies. I have 6 shells and 10 soaker pads, with 4 more soaker pads on the way. However, they also work really well with a trifolded prefold just laid in the soaker. They're a bit tricky for a newborn at first since you have to sort of ""scrunch"" the soaker down into the diaper, but after putting the diaper on once or twice, it was not an issue. I will say that even with a breastfed baby that that contain poo really well on the soaker pads. I've only had poo on the shells 3 times, and those were with hugely explosive poos, but even then, they were still contained WITHIN the shell, and no blowouts. :) I only have 6 shells and I find that to be more than enough, and could even make my whole stash thee diapers using 6 shells. I think 12 shells like they suggest would be overkill. They are aplix, and some people don't like that. I love the aplix they use and don't have issues with ""diaper chains"" in the wash, but i know others have. they are coming out with a snap version in june, and will be coming out with more colors and prints in the late fall.

So some Pros: Fit most babies shapes really well. Shells are reusable until they are soiled so it reduces laundry, and eventually is more cost effective since you need more soakers, but less shells. It is a trim fitting diaper, and since it's an All in 2, makes a great diaper bag diaper since it can be dependable, and there's less bulk to carry. It's organic cotton, so natural fibers against baby's bottom.

Cons: They do leave red marks on baby's legs/back. They're not terrible though, no mre than a pair of socks would leave on baby but i know this bothers some people. They stain more easily than other fabrics, but I think that's just the nature of the beast. They are a bit pricey to invest in initially.

You can find them at: http://www.thenaturalbabyco.com/grobaby%E2%84%A2-ic-11_16.html

Welcome to the world Ender Logan!

2009-04-05T19:49:00.001-07:00

After finding out we were expecting again we began to seek out a midwife for a homebirth. We had experienced three traumatizing hospital births and felt that there had to be a better way. We emailed a few midwives, but in our hearts we truly felt we had already decided on which one to hire. She was kind and compassionate and offered reassurance during our most recent miscarriage and was also the first to respond to our email about seeking a midwife for our pregnancy. We set up a date for a consultation and had decided that if Sean and I both felt comfortable with her and decided that we would hire her on the spot, and we did. She had such an amazing calmness about her, which I knew would be a great balance with myself, as I tend to be a bit of the anxious type.

The pregnancy was fairly uneventful until the last trimester. I had some preterm labor, some elevated blood pressures, and some bed rest. I had a high leak at 36 weeks which re-sealed itself. I had also been 4cm dilated since 36 weeks. At our 39 week appointment I asked Coley to check my cervix and to possibly do a membrane sweep. What I really wanted was to have my water broken so we could get the show on the road. I felt like once my water broke, that everything would just go smoothly, and quickly. By this time Sean and I were both very ready and eager to meet our baby and were beginning to have concerns that if I went into labor while Sean was at work, that he might not make it home. Coley checked my cervix and said I was 5cm. and could stretch to 6 and that the baby had come down quite a bit. She offered to break my water. We were both nervous and excited.

Coley went out to her car to get her supplies, and to call her apprentice (who we later found out was in mammoth and wouldn’t make it). We scrambled to make up our bed with plastic, get the birth pool blown up, and let the kids know that the baby was coming. Coley came back in and broke my water around 3:30. We sat around and talked, and waited for contractions. I had a few piddly ones here and there, but nothing really worth noting or noticing. Around 5:30 we decided to take a walk to the park down the street. The kids wanted to get out, and we wanted to get labor going. By the time we made it to the park my contractions began. I went down the slide once with our youngest, Emma, and a very strong contraction hit me. I knew that it was time to get back to the house. Coley and I walked back to the house, while Sean followed in the car a few minutes later. We got back to the house around 6 and my contractions felt like they were coming fast and furious, about every 2 minutes. I had to really concentrate through them, and they were painful. Sean got home and I had him immediately fill the birth pool and I got in around 6:30 or so. Sean came and went as he continued to get things ready, or bring me water, take pictures, etc. I truly felt like I needed to be alone (meaning not watched but wanted them nearby). Both Sean and Coley were very respectful of this. I remember watching Coley’s reflection in the glass of the shower, as she watched mine as well from our bed in the other room.

It was such a strange feeling at this point. The pain was overwhelming, yet manageable. The peaks of the contractions would leave me feeling like I wanted to try to crawl out of my skin, in fact, I’m fairly sure I was trying as I arched my back out of the water. Looking back at the birth video I labored quietly in the pool, only breathing heavily through contractions and resting in between. Inside, I felt a bit out of control, I had an internal dialogue with myself about going to the hospital for an epidural, but it’s not something I truly wanted or would have done. I had a lot of pressure in my pubic bone and was shaking during contractions. I knew I was in transition, but I never made the connection that soon the hard work would be over and our baby would be here.

I began pushing gently a bit in the tub. Coley must have noticed since she asked me to try and get out and go to the bathroom so I wouldn’t have a full bladder while pushing. Once I got on the toilet, I didn’t want to get off. I was pushing with each contraction, but trying not to let anybody notice. I didn’t want to deliver there but felt like I couldn’t move. Coley never said it, but I could tell by looking at her that she really didn’t want me delivering on the toilet either. She offered the birth stool. I tried it for a split second. I was still only giving gentle pushes. I was afraid it was too soon to be pushing and didn’t want to swell my cervix. Coley checked me and said there was just a lip left of my cervix and said I could push. I let my guard down then and made my way back to the pool. I began pushing earnestly with each contraction. At this point I began asking how much longer, and almost pleading how much longer. It felt like it was still forever away. Coley smiled, and nodded, and just kept saying “You’re doing great. He’s moving down”. At some point I reached down and felt inside and could feel that he was almost there. This gave me just the encouragement I needed to keep going. As he was crowning, I worked hard to stay in control and try not to push too hard. Coley supported my perineum while I supported my labia. I really did not want to tear. Once his head was out I had a bit of a break. His head was out for about 2 minutes when Coley asked if I was having a contraction. I wasn’t having one, but I could tell that it was time for him to come out. I gave another eager push and out he came. I was a bit in shock. Coley told me to grab my baby and I did. Just 4 ½ hours after my water breaking, and 2 hours after contractions really began Ender Logan was born March 28th, 2009 at 7:52 p.m.

I was so overwhelmed with emotion. I couldn’t believe that he was here, that I had done it, and just how quick and smooth it all went. He surprised us all by how much vernix he had. He came out sleeping but was nice and pink, with apgars of 10 and 10. The kids all came into the room to meet him. After a few minutes, the kids left the room while I delivered the placenta. I handed the baby to Sean along with his placenta since it was still attached. Sean was surprised by just how heavy the placenta was. Coley helped me get out of the tub and into the bed. She checked me out and said I had just a tiny superficial tear not worth suturing. I felt great. I was a little shaky, a little in shock, but felt wonderful. The kids crawled up in the bed again as Ender nursed. When he was done nursing Coley checked him out and gave him a clean bill of health. We weighed and measured him, and he weighed in at 7lbs. 13 oz. and 21 inches long. He was perfect.

While my birth was nothing like I envisioned it would be (going into labor at night, candlelight, kids not home, easing into labor gently and building up, music playing, etc.) it was the most amazing experience of my life and the perfect birth for our family. I couldn’t have done it without my husband, Sean, who lovingly supported me every step of the way during the pregnancy and continued on during the birth. He never showed feared, and stepped in when I needed him, and backed off when I didn’t. Or, without my midwife, Coley, who became a friend, and reassured me when things weren’t quite right, and gave me the confidence I needed to ensure a safe delivery at home. We are forever grateful for the presence you brought to our birth and for helping us along through this journey. Thank you.

Ender Logan Stanford

March 28, 2009 7:52 p.m.

7lbs. 13 oz. 21 inches

30 weeks: In the home stretch

2009-01-25T08:45:00.001-08:00

I'm 30 weeks now. What I consider the "homestretch".My appointments shift from once a month, to every 2 weeks. Midwife appointments shift from basic prenatal checks to going over my birth plan, discussing any fears, ironing out the birth deals, going over any testing we'd like to have or decline, and discussing whether we'd like the standard "protocol" for baby when he's born. Wow! It feels like just yesterday I was lining up the handfuls of pregnancy tests on the counter in amazement.

Anyways, yet another good midwife appointment. I'm up 2 pounds in 2 weeks. n which my midwife joyfully exclaimed "YES! Finally!" Which put me at 4 1/2 lbs. under pre-pregnancy weight still, but about 4 lbs. up from when I first started seeing my midwife. I'm sure I'll really start packing on the pounds these last few weeks as my body prepares for birth and as baby Dino begins to pack on his chunk.

There was slight protein in my urine, which has been an issue on and off his pregnancy, but not major and probably most likely due to whatever I had eaten/not eaten prior. My bloodwork came back. My hemoglobin is just fine. slightly lower compared to some, but perfectly fine for a pregnant woman 30 weeks pregnant, so YAY!

We discussed the GD test for diabeties, circumcision, vitamin k injection for baby, and the eye ointment for baby as well. I've decided to bypass the GD testing. My diet is goo and I'm testing my glucose levels at home periodically and am always right on target. As for circumcision, wow, what a hot topic, huh? My oldest is not circumcised. I believe it's not necessary and is a cosmetic procedure and that it's best left to be. Hubby, on the other hand feels very strongly that this baby should be circumcised. So, we're at a crossroad, and have something to hash out a bit before the birth. Because we have not completely decided about circumcision we've decided to go ahead and give the baby the vitamin k shot at birth, to help with blood clotting. I have however declined the eye goop , since it's to protect against std's as the baby travels the birth canal, which I am confident that I do not have, and that my husband has not given me. So, that's that for now. I'm sure we'll discuss the GBS (group beta strep) more in depth at my next appointment. I am torn on whether to even do the testing or not. It's a bigger test to me, so I'm trying to weigh each side carefully.

As for Baby, he's doing amazingly well. She got the last ultrasound report. My cervix is measuring right on track and behaving itself. Baby measured RIGHT on track as well. Placenta is high and posterior. cord insertion looked good. And I won't be going back to the perinatologist for the remainder of the pregnancy unless I manage to go past 41-42 weeks.

Baby's heartrate sounded good and strong yesterday. My midwife palpated a bit and determined baby to be head down, body on left side, and LOA (left occiput anterior) which is the prime position for giving birth. Hopefully he stays put. He's still rather high, but I'm not expecting him to drop a ton before labor. For now he resides just under my ribs to remind mommy that he's there, in a not so comfortable way.

Since I don't think I've posted many (if any) belly pictures this pregnancy, here's my 30 week picture. Yes, I'm huge.

27.5 weeks

2009-01-07T10:49:00.000-08:00

Wow, it's been a long road but we have officially passed our first "big" milestone this pregnancy. There has been some (not so hidden) anxiety leading up to 27 weeks 2 days. If you've followed this blog for long then you'll know that it was at this gestation that our Preemie Princess Emma Grace was born. All 2lbs. 2oz. of her that struggled to live in those early weeks. We have prayed for a healthy pregnancy, and for a full-term baby, and have taken this pregnancy day by day. What a joy to make it past 27 weeks.

We had yet another good, boring, midwife appt. last saturday. I have been super duper tired and apparently pale lookingm, so she's ordered some lab work to check for anemia. Not a huge deal, but something which we'd rather treat sooner rather than later. Baby Dino's heartbeat was on the slower side at 128 bpm, but that's probably because he was resting. He appears to be back head down, yay! Everything else looked good. My next midwife appt. will be in 3 weeks when I hit 30 weeks. From there we go to every 2 weeks. Yikes! It's beginning to feel like crunch time.

I have another ultrasound appt. and ultrasound cervical check tomorrow. I'm sure everything will be just fine. I'll also get to see this little guy again. I'm curious to know what their estimated weight it for him, since he feels on the bigger side and we can compare to what Emma actually was when she was born. I know there is always some inaccuracy either way with weights, but it's still fun to speculate.

Here's a picture from our last ultrasound. Hopefully, I'll have another to post tomorrow.

Another good midwife appointment.

2008-12-06T18:29:00.000-08:00

Well, I'm 23 weeks today, and had another good midwife appoint. C (my midwife) brought S (her apprentice) with her today. She was just as lovely as my midwife. We had alot of fun and alot of good laughs. My weight is up by 1.5 lbs. (total for the pregnancy), No protein/ketones in my urine. Baby's heartbeat was great. I'm measuring somewhere between 25-26cm. So once again measuring slightly large for dates, but that's not unusual for having several kids. Not to mention I think he's going to be my biggest baby so far. Which is funny, since when C was palpating my uterus she asked "we DID confirm there is only one right". He's mighty big! To me, he feels almost as big as Emma was when she was born at 27 weeks. So who knows. I'm fully expecting an 8 1/2-9 lb. baby or more. I just hope he fits his clothes and cute cloth diapers.

Other than that. We scheduled our last "4 week" visit for January 3, 2009. From there I will have one "3 week" visit which will take me to 30 weeks, and then I believe from there on out I'll have visits every 2 weeks until 36 or 38 weeks at which point I'll go to weekly visits until I deliver. WOW, putting it like that makes it feel not so far away. That's only about 8 visits left! For some reason I feel like I won't make it to April though, and March 28th, feels closer to when I'll deliver. But, we'll see what God (and the baby) have in store for us. It's becoming much more real and exciting now.

19 weeks 4 days

2008-11-13T19:09:00.000-08:00

I had an ultrasound today to check my cervix length again. Last time is was 3.28 which is on the lower side of normal. Today...we couldn't see it. So, I go back on Monday for another quick scan with a full bladder to check the length. Baby Dino is right on track once again, and looks good. He was head down and facing my placenta. (Just how I want him positioned for birth, but I'm sure he'll move around quite a bit before then). He had his face up by his head and looked like he was waving at one point. Until Monday, here's a quick peek at him.

Baby Dinos Heartbeat

2008-10-19T19:51:00.000-07:00

We rented a doppler again for this baby for reassurance. Baby Dino was very active and hard to track down, but slowed down enough for us to catch a bit of his heartbeat. It's such a sweet sound. I don't think I could ever get tired of hearing it!

It's a BOY!

2008-10-17T16:28:00.000-07:00

We are thrilled to announce that Baby Dino is undeniably a BOY! Big brother Caden is ecstatic. the girls will come around. :)

Stick baby stick

2008-10-14T14:56:00.000-07:00

Well, everything seems to be going okay with the pregnancy so far. I am beginning to feel tiny flutters on my lower right hand side, I can tell my uterus is growing. I'm down 12 lbs. from my pre-pregnancy weight but that's okay since I was extra fluffy to begin with. I weaned myself off the progesterone at 14 weeks an that seemed to go well. Unfortunately, I've had a bit of cramping in the evenings so we went ahead and scheduled an ultrasound for a cervical length check to make sure my cervix isn't funneling from the inside. Hopefully, they're just normal braxton hicks and not doing anything. The ultrasound will be on October 28th. I'll be 17 weeks and a few days. We're still not sure whether we want to find out whether it's a boy or a girl or not, so if they can tell we plan on having them right it down in an envelope and if we decide to know we'll open it together. Other than that. Not much going on. Yay for boring!

Birth Trauma

2008-09-19T10:37:00.000-07:00

For those of you who have been blessed by motherhood you are well aware of how it changes you. how the process of pregnancy, labor and delivery, and those first few weeks mold you, and stick with you forever. Whether good or bad, the birth experience is truly an experience that you will carry for the rest of your lives.

Unfortunately, for some of us, pregnancy, and labor and delivery were not smooth sailing. It wasn't like you see in the pictures, mother's huffing and puffing, and pushing out a nice clean bundle of joy. Being pregnant once again and planning a home birth is making me face trauma that I experienced in my past pregnancies and deliveries. Trauma which i have tried hard to bury deep within me. I find it emerging and making me anxious and scared of what's to come.

When I became pregnant with my son, I was single. The pregnancy progressed relatively well. I had an irritable uterus and was on terbutaline for much of my pregnancy. Around 26 weeks I got very sick with some form of a virus that just didn't want to budge. I was put on tetracycline. I got better, but unfortunately Caden's growth began to slow. He was slowly slipping further and further behind in growth. By the time I was 31 weeks he was 4 weeks behind in growth and diagnosed with IUGR (Inter uterine growth retardation). I was seeing a perinatologist as well as my regular OB. I had appts. 3 times a week. Then began the talk about having a cesarean and taking him early. I fought them long and hard. He passed all the NST's with flying colors, aside from being behind in growth he was healthy and reactive. Each week I fought for just one more week. We made it to 39 weeks. Another issue was he was still flipping from breech to vertex. The doctor decided when he flipped to vertex at 39 weeks we would induce. Unfortunately, my body wasn't ready.

I checked into the hospital the afternoon of January 28, 2003. They placed cervadil to soften my cervix and hope for things to progress. After 12 hours they began pitocin. The pitocin continued until I was fully dilated 3 days later on January 31, 2003. I was exhausted, he was stuck. My water was broken before he was engaged and he was wedged in weird. I couldn't push him out. From here it begins a nightmare. I was rushed for a cesarean, the epidural didn't take, but the OB couldn't wait., I grit my teeth and took the pain. I felt EVERY cut. I felt like I was going to pass out or throw up. When he was born he looked like he had a tumor on his head. The head neonatologist commented "this is NOT normal molding". I do not remember seeing him after the birth, but there is a picture of him up towards my face, so I must have. He was whisked away to the NICU where they would then tell my mom that they were not sure if he would make or what was wrong with him.

I remember waking up in recovery asking where my baby was and wanting to see him. they quickly knocked me back out. I was then taken into a postpartum room with another young girl who had her baby rooming in. there were other rooms available down the hall which were private but due to staffing they didn't want to walk down the hall. It hurt so bad to watch her with her baby and know that mine was in the NICU, and not knowing how he was going to do. they refused to let me visit. They did bring in pictures which did not even look like a normal baby. The following morning he was brought to me. His poor face looked like he had been in a fight. The care I received while there for the remainder of the time was less than sub-par. This experience forever haunts me. I just remember feeling so lost, so powerless, so invaded.

When I became pregnant with my daughter I knew that there had to be a better way. I began researching vaginal birth after cesarean, and even began researching home birth. I was newly married and I knew my husband wouldn't go for a home birth so I resigned myself to another hospital birth but decided this time would be better. I prepared my body with evening primrose oil, and red raspberry leaf tea. I had a supportive midwife through Kaiser that seemed to really care. I decided I would labor at home for as long as possible. To my surprise at at 37 weeks 5 days I had a cervical check at the doctors, I was 5 cm. and hadn't had a whole lot of contractions. I sent Sean to work, and went shopping with my mom for last minute items. i began feeling a lot of back pain, it wasn't excruciating, but i did notice it would come in waves. YAY, contractions. I labored most the day upright, and walking through stores. We made our way back to our house that afternoon. I finally had to concentrate on contractions and got into a warm bath. I was so excited, I wasn't in pain, but it was intense. Sean came home from work and I was feeling like I was in transition so we headed to the hospital. Unfortunately, everything stopped once we got to the hospital. They checked me and I was a stretchy 7, but I was not contracting at all. they sent me walking for 30 minutes and still nothing. they wanted to break my water (which in hindsight we should have tried), I was so upset about my previous birth and I just know that the artificial rupture of membranes caused the ultimate cesarean that I refused to have my water broken. So they started pitocin. I was also afraid of pitocin induced contractions so I went for an epidural. The epidural made my blood pressure drop and I almost passed out. This led to other interventions. The night nurse was really rude, took away my call light, yelled at my mom, had my husband sleeping on the floor, turned out my lights when i didn't want her to, didn't empty my catheter (which has led to permanent bladder damage), and didn't up the pitocin all night, until the morning where she upped it to where it SHOULD have been had she done it slowly. For those who know about VBAC's you know inductions with pitocin are not the best panning and upping slowly is the ONLY way it should be done if it is. We got a new nurse the following morning and we had the administrators of the hospital in our room talking to us as I was in heavy labor.the epidueral began wearing off towards the end of labor. My water was broken the following morning and things progressed relatively quickly. I was ready to push around 11:30-noon but chose not to and my nurses and midwife were ok with this. I changed positions, and breathed my baby down. I felt ready to push around 4 and she was born at 4:32 vaginally. SUCCESS. I was still left feeling violated, and abused. Although it was slightly healing.

When my I became pregnant with my third I was set on a home birth, although my husband still was not. The whole pregnancy I felt completely off and I ended up delivering prematurely at 27 weeks and 2 days by cesarean. It was very traumatic and we are still processing the details 2 1/2 year later. (her story and pictures are the bulk of this blog so far)

Now that I am pregnant once again with my 4th, I am facing these fears and replaying the details of all my birth experiences over and over in my mind. I find myself getting anxious and wondering if I can do it. Can I really have a normal birth, will I really be able to have another vaginal birth, Is it possible to be treated with respect? I have found a wonderful home birth midwife, but I know I will need to work through these feelings. Hopefully as the pregnancy progresses I can process these birth traumas and reach a peaceful place before embarking on what will hopefully be a healing birth experience.

2008-09-05T19:00:00.000-07:00

Well, Baby Dino continues to grow right on track. My progesterone is still eerily low though considering the supplements i'm taking. It's only gone from 9.6 to 11.2 to 11.3 in the past 3 weeks. I saw the doctor today and he wants me to begin vaginal suppositories as well. 3 a day, they're each 200mg. That wouold be 1,000mg of progesterone a day which seems awfully high. I'm not sure I'm willing to go that high. The baby is holding it's own, I've had no bleeding or real problems with the pregnancy, and I'm hoping my body will start kicking in and that the placenta will start producing good amounts on its own.

I have been talking with Sean about a homebirth for quite some time. He has finally agreed to meet with a few midwives and go the homebirth route as long as the baby continues to do well and this pregnancy remains uncomplicated. I have been seeing an OB for monitoring progesterone and labs up until this point. He's known for being less interventive and will attend Vbac's (vaginal birth after ceserean). After speaking with him today and hearing my history and knowing that my previous VBAC baby was between my 2 cesereans he said "that I could not have a VBAC" So, it's imperitive that I find a midwife that I mesh well with, can trust, and that will trust that my body will do what it was made to do, and bring our child into this world safely and with minimal interventions. So, I have a midwife appt. tomorrow. I am dissapointed that out of 5 midwives I've emailed, that only one has emailed me back, luckily this one has been very professional and caring during my last miscarriage.

Without further ado, here's little baby dino measuring perfect at 9 weeks 6 days. My due date has been moved back to the original due date of April 4, 2009.

2008-08-26T10:05:00.000-07:00

August 15: We had an ultrasound today. It took awhile to find Baby dino's heartbeat and there was a tense few minutes. However, after looking and looking we found it at a strong 140bpm. Baby Dino is measuring 6 weeks 3 days. My due date has been moved forward 3 days to April 7, 2009. Which I'm more than fine by in case I go late (although I've never gone late.

August 20: Blood draw to check my progesterone levels since it's being supplemented with 200mg of Prometrium daily. Progesterone came back at 11.2 only up 2 points from previous draw at 9.6. Still not high enough. Have another blood check on 8/26/08. If levels are still low will be upping dose of Prometrium.

We've come full circle...Kinda

2008-08-13T10:30:00.000-07:00

2 1/2 years ago this blog really began when I became pregnant with Emma, our youngest. It then turned into a blog detailing her premature birth and the struggles within. Well, here we are once again expecting baby #4. We hope and pray that this pregnancy goes well and that we'll make it full term. We're due the beginning of April. :)

Square foot Gardening

2008-06-04T13:07:00.000-07:00

To keep up with my recent efforts to be a better wife, mother , homemaker I've been trying to do a better job of housekeeping, more home cooked meals (from scratch), more time outside, and most recently to further domesticate myself I decided to plant an organic garden. One problem: our ground is like rock, our backyard is unfinished, we're having our patio poured, block wall done soon and there was not a place for our garden. Or, so I thought! I recently read a thread on on of my message boards about square foot gardening using raised beds which are divided into square feet. You don't use your own dirt(I guess you could though). You use a mix of potting soil, mulch, peat moss, etc.

So last night Sean and I headed off to home depot. 2 hours and $180 later we came home with a bunch of plants, dirt, and wood. In the dark at 10 at night we built our planters and filled them with the dirt mix. This morning came the fun part. Planting with the kids. We ended up with (2) tomato plants, (2) green bell pepper, (1) red bell pepper, (1) artichoke, (1 cilantro), (1) rosemary, (2) bunches of red onions,
(2) strawberry plants, (2) onion chive plants, and some seeds, (1) Habanero pepper,
(1) Jalapeno pepper, (1) banana pepper, (1) pumpkin (it has a 4'x2' area for one plant), (2) cucumbers. Without further ado here are some pictures from this morning.

Planter divided into square feet with twin

The kids eager to get started

Caden helping put a plant into the ground.

The girls taking their turn.

Emma putting dirt around the Bell Pepper Plant (I love this picture!)

Lily concentrating on the task at hand.

Caden pouring it in slowly.

Emma, missing the mark. A+ for effort.

The final result!

Call of the Wild

2008-05-06T13:22:00.001-07:00

There are some perks to living in an under-developed community. One of them is finding beauty in nature. this of course, includes various animals. My neighbor had a pigeon couple who nested on her roof. We've heard the baby birdies for a few days now. Today when we came outside we noticed that the nest had been attacked (most likely by a hawk). The nest was scattered across her driveway with little remnant of the birds. Her small dog started barking at the corner of her yard where she found one lonely baby bird left. From my research this bird appeared to be about 2-3 weeks old. The parents weren't in sight. I brought it inside made it a nest of warm towels and went to research how to take care of a baby pigeon. all the while we kept a lookout for the parents. Luckily, the parents returned to where the nest had been so we found bits and pieces of the nest returned them there along with the baby bird. We'll continue to watch and hopefully the baby bird and Mama will be reunited. Here are some pictures from this morning. It's so ugly it's cute!

While the baby bird was super cute we also have some not so cute critters roaming about. Yesterday, we found, "caught", and got rid of not one, but TWO rather large snakes. Hopefully, this is the last we see of them, but probably not.

while I'm at it, this is across the street from us.

Win a free ergo!

2008-04-29T21:05:00.001-07:00

Check out this site to win a free ERGO Baby carrier!

http://www.alongfortheride.biz/contest-s/49.htm

Back to square one

2008-04-25T10:53:00.000-07:00

First off, here's a song I've been listening to ALOT lately. It helps me work through my feelings and lets me just have a good cry here and there: Listen to it if you can.

http://www.youtube.com/watch?v=JmIZOd5AXmQ&feature=PlayList&p=BB3AA39F3087D6D0&index=57

It's been a rough couple days in the Stanford Home. Emma has been unusually clingy, needy, and not feeling well. As you can imagine with 3 kids this makes things difficult. Throw in some medical problems and it makes for a very tired, and cranky mom, which leads to cranky kids, and cranky husband. Emma seems to be doing better today and while I have a raging migraine, the kids are happy go lucky and playing peacefully in their playroom.

Some good news. Caden is (mostly) registered for Kindergarten. All of a sudden I feel very old! LOL. We have to meet with the special education board to develop an IEP for him and then his registration will be complete. He'll be starting in July. We've also really been working with Caden on Math and reading. He tends to shut down if something is difficult or if he finds it not to be stimulating enough. A friend told me about a reading program at www.headsprout.com It's a video game online which teaches reading. Every 5 episodes or so the child should be able to read a new book which comes with the program. Caden just read a new book which you can see a video of here: http://youtube.com/watch?v=818__2GxlNc We are SO proud of him! On another note, we've been supplementing him with pediasure (one or 2 cans a day) and he seems to have gained a few ounces which is good since he hadn't really gained any weight in over a year. YAY Caden.

Lily is doing really well. For the most part she is always there to greet you with a smile. Soes have her devious side and can be quite moody but at times we find it really to be funny. She can also count to 10 (most of the time) in english AND spanish (Thanks Dora The Explorer). She's growing like a weed and already into 5T clothing (same size as Caden) and overall just doing VERY well. She's also very motherly and nurturing and enjoys helping take care of Emma and fetching supplies for me.

As for Emma, we're switching health insurance companies on May 1st. We have an appt. with a (supposedly) very good G.I. doctor through CHOC on May 2nd. We're hoping to get some second opinions and more testing and hopefully find out what we're truly dealing with. We had a follow up with her current g.i. Sean was able to take off work and come with me to help talk to the doctor and explain what's been going on. She weighed in at 25lbs. 3 ounces so the tube feedings have really helped kick start her weight gain. Which brings us to the mystery of why can she gain on continuous drip feeds but not by eating solid foods even though with solids she was taking in more calories. Her doctor went over alot of things with us and basically brought us back to square 1. She feels it's either Celiac or Cystic Fibrosis. The celiac blood tests all came back negative and the inital screening for CF did as well (albeit they only tested for 36 mutations out of almost 1,600 mutations, so i don't consider it truly ruled out). She wants her to have a sweat test for CF and wants to schedule an endoscopy with biopsy to check for celiacs. She's thinking if it's celiac maybe it just didn't show in blood and will in the biopsy. The good news is she's willing to test further now since things are still going on. The psuedo bad news we're switching insurances and hopefully our new doc can carry out these tests.

In the meantime we're conducting our own "experiment". We've put her on gluten-free foods and dropped her tube feedings dramatically. If it is celiac and an issue with gluten than a gluten free diet should resolve her diagestive issues. If it's not an issue with gluten then she won't gain weight (or lose some) will continue diarrhea, and nothing will be resolved. Since we feel like we're always waiting we figured it couldn't help to try. We'll give it a week and see what her body does. It's been 2 days. Yesterday, was a particularly BAD day. She woke up crying, and continued to cry, moan, and scream her way through the day. Her poor belly was very distended, and she seemed very weak. she finally pooped during her nap which resulted in explosive diarrhea. Her moaning and crying continued on through the evening and past bedtime. I was a very tired Mama. This morning she woke up and appears to be feeling a ton better, but still had another Diarrhea diaper. I really hope we can get to the bottom of what's going on with her. At this point we just want a diagnosis. We can manage a diagnosis, but can't manage the unknown. It's so difficult to watch her have good days and bad days and not know how to help her.

Sean and I are doing alright, despite it all. Both a bit drained, tired, and somewhat feeling down but managing. Hopefully, we can get a date night soon and have some time to reconnect.

And, I'll leave you with a few pictures of the past few weeks.

Well, blogger is being weird so, I'll have to add more pics later!

G-Tube 101

2008-04-10T10:46:00.000-07:00

Over the past few years I’ve had quite a few questions on exactly how the feeding tube works and how we attach it. Everyone we “know” (on message boards with children with special needs) seems to have a certain way of securing their child’s feeding tube which works for them. We’ve tried numerous ways but each has its own drawbacks. We keep coming back to this way though. Pros: It holds well, she can’t take it off. If her tube snags on something it pulls on the tape/skin first before pulling on her stoma. Cons: It takes a bit more time to set up, it is more expensive for supplies, and it takes up more space on her stomach. Below is a picture tutorial of how we get Emma’s feeds ready for the day and secured to her.

Here are all the supplies I have ready before I get started:

Before I do anything with her I fill the feed bag.

The bag is then “burped” (turned upside down so the bubbles float up and then primed a bit) to get out any air bubbles which will cause her pump to error and is also “primed” to get her formula through all of the tubing before being connected to her.

I then attach the extension (part which connects to the actual AMT button and also to her feed bag. The red “Christmas tree” part of the feed bag connects to the blue part of her extension. The opposite end of the extension connects to her button. I also prime the formula through her extension at this time.

Next, I put down a layer of hydrocolloid dressing (or Duoderm depending on which I have). This protects her very sensitive skin from multiple tape changes. We try to make this bottom dressing last 3-5 days to help protect her skin. We also switch which side of her g-tube this bottom dressing goes on with each dressing change.

I then connect her feedbag and extension to her button. This locks into her button by turning the extension clockwise.

After this I make a loop in the extension and place it on top of the hydrocolloid dressing. The loop helps the tube from being pulled out from the tape which I’ll put over it. I also use Hy-tape (the orange tape) to keep the loop in place.

After securing the tube I use a layer of Tegaderm, which is a very thin tape which goes over her tube and the bottom dressing to sandwich everything together. I’ve found using this method is the most secure.

After securing her tube I put the feed bag into the pump as shown and close the door and begin the feed.

Emma is an active toddler so we have the Zevex enteralite Infinity made especially for mobility. It is lightweight, does not have a drip chambers, and has few errors.
I put her feed bag and pump into her backpack and she wears her backpack all day. She loves her backpack and enjoys helping in care of her tube and always fastens her “seatbelt” across her chest to help evenly distribute her weight.

So, that’s the logistics of her feeding tube, what we do everyday and how it is worn. Overall, it takes about 10 minutes to get her set up.

It never ends.

2008-03-06T23:14:00.000-08:00

WARNING: This is a very long post probably containing many typos and gramatical errors. Read at your own risk!

It’s taken me awhile to write this all out. How do you put into one post weeks, months, years of stress, anger, and worry. I’ve had my moments of feeling weak and the “why me’s?” But, overall I’ve held onto my faith and hope that in the end it will all be right…until today. I feel broken down and beaten. I’ve cried a million tears, cursed a hundred phrases, and questioned whether there really was a god and why he feels I can handle all of this. Surely, he doesn’t realize that I’ve reached my breaking point.

Some of you may or may not know about Emma’s ongoing struggles. Since birth she’s had numerous respiratory issues, reflux, feeding issues, failure to thrive, etc. Last July we began the process of tube weaning her. It was fairly uneventful. She lost weight but gained it back quickly. She began eating everything in site. She eats more than the other 2 kids at any given meal, constantly snacks and all in all is just a big eater. The problem? She’s LOST weight since last august. She also seems to have bouts of abdominal pain, and abdominal distention.

She’s had diarrhea off and on for no rhyme or reason, and her stools are always really foul and somewhat greasy/weird looking. Fast forward to about 6 months ago. She began to get weird rashes. Small areas, here and there quickly fading. We didn’t think much of it until last Tuesday when she woke up from head to toe in hives with huge welts. Poor baby was in so much pain. We took her to urgent care and they gave her a shot of steroids and sent us home to follow up with her pediatrician 2 days later at her well baby. The steroids seemed to work and by bedtime she was fine. The next morning, Wednesday she woke to an even worse state. I thought she couldn’t look worse, her eyes were swollen and squinted, Her cheeks were swollen, her feet swelled so bad with hives I couldn’t get her shoes on. Off to a different Emergency Room we went (our regular doctor area). The pediatrician asked the usual questions. Have there been any changes in soaps, detergents, or anything in the house? No. Any new foods? No, and her allergy panel was negative for all foods. She contacted a dermatologist and allergist. Of, course this was by phone and she can’t get in to see the dermatologist until March 24. They put her on Zyrtec (an allergy) med in the hopes that it would help. She’ll be on that until she gets to the dermatologist for a skin biopsy.

To date she’s been tested for celiac. Negative. Food allergies, Negative. Anemia: pretty severe (she is also very very pale and bruises easily). C. diff. Negative. She also had the normal cbc’s and all that. There are a few other tests which I can’t remember right now, but all her labs are pretty normal. Her electrolytes are off with sodium and potassium and one other is elevated, but they’re waiting on the rest of her labs to come back before delving into that one further. We’re also waiting on the results from her fecal fat (which could indicate an absorption issue), fecal elastace, and one other fecal test.

So, today she woke up with more hives but since there’s nothing we can do aside from what we’re doing we headed off to the pediatrician for all 3 kids well child physicals. Guess what? More bad news. Or should I start with the Good news?

The good news is lily is perfectly healthy, growing well, looks good. She may have a uti so she did have a urinalysis done. She does have some speech issues so she’s being referred for a hearing test and for speech therapy.

As for Caden, he passed his eye test with flying colors. His hearing test his left ear was fine, but there was a significant difference in his right ear and he failed on his right ear. So he’ll be referred to the hearing specialist as well. He’s grown just about an inch and a half in the last year but unfortunately has not gained ANY weight in the last (almost) year and a half. They’ve of course watched him closely over the time. It seems he teeters between 38-40 consistently. He eats fine (like any other toddler/young kid really. Some days picky, some days everything in sight. He’s also been off and on pediasure. He’s always been pretty skinny since he was a baby and I guess you just get used to seeing a rib cage. It was a blow to hear he had gained no weight. He also has a very significant chronic cough, most likely due to asthma, but it doesn’t respond well to flovent or albuterol. He’s being referred to an allergist as well. And because of his issues and Emma’s they are also doing a cystic fibrosis test on him, and a thyroid test.

Onto Emma, well, we finally found a doctor who seems as concerned as us (not that her others don’t) but her g.i. especially is very conservative in testing and plays wait and see a lot which is not ok, when you can literally watch your child fall apart. It hurt so bad when one of the first things she said about Emma is, “This is not a healthy child, she LOOKS sickly.” It wasn’t said in a mean way, but a rather concerned manner. I almost lost it in the office. While it was hard to hear it was also a small relief to have a doctor validate what we were thinking and feeling. She’s pale, her rib cage shows, her tummy’s only chubby when it’s distended because she hasn’t pooped (we’re talking in between her diarrhea. Her stomach goes flat for a few hours between stools). She just looks, well, sick. They took more blood and are also doing a cystic fibrosis test on her along with some other testing. At this point I really need to pull out a notebook and begin taking notes because I can’t keep track of everything with her. So now, we wait and see. She hasn’t really gained any weight. She has grown 3 inches though, YAY. Her speech is fine and her hearing wasn’t tested, but I’ll assume it’s fine, unless she gives us a reason to believe otherwise. This girl is SO tough though, she’s been poked about 8 different times in the past 3 days and still smiles. She does have quite a few more irritable moments, but what can you expect.

I came home and just bawled. I haven’t cried like that since the nicu days. Of course Sean is just as worried. Out of the blue tonight he started looking for video camera online and decided we need one. NOW. His reasoning “just in case”. It’s really hitting us hard and the not knowing is the worst. It’s hard to stay positive, and think positive, especially with everything hitting at once. I just want our lives back, I want us all to be healthy and happy and be able to move on. In the meantime, prayers and good thoughts would be greatly appreciated since we’re not holding up well on our own anymore.

If you’ve made it this far, thank you.

Happy 2nd Birthday Emma!

2008-02-17T23:23:00.001-08:00

2 years ago I was lying in a hospital bed, being pumped full of magnesium sulfate and terbutaline. I had once dose of steroids in me and some ambien to help me sleep. Tossing and turning while my husband slept on the chairs by my side. I was praying and praying and praying and talking to my belly in hopes that I could just will her to stay put a few more days…

It all happened so fast. The neonatologist came in to speak with us about what a 27 weeker would be like. While in the room I was heavy into contractions and my water broke which took me from 2cm. dilated to 5cm. all with a whoosh of water. It was all a blur at that point and the next thing I remember is being in the operating room and having her pulled out of me and choosing a name right then and there, Emma Grace. My husband left to be with her and I sat in the recovery room, not really recovering, but rather waiting and hoping to see my baby as soon as possible. Life as we knew it would be tipped turned upside down.

She spent 9 weeks, 4 days, and 28 minutes in the nicu (the first time). Over the next year we struggled through oral aversions, severe reflux, tube feedings, many more hospitalizations. Her first birthday brought some hope and we began to see the light of the tunnel.

It’s been another year of growing. WOW, what a difference a year makes. Emma is an absolute doll to be around. She is bright and cheery. Talks up a storm, sings, counts to 10 and knows her ABC’s. She exceeded any and all expectations. She still has her tube feeding button but is eating 100% There is a concern on whether she may have a mal-absorption disorder of some kind, but other than that she is just perfect.

They say that 2 years marks when preemies are considered “caught up” and we no longer use the adjusted age. I just feel so blessed that we’ve made it this far and that she’s grown into such an independent, bright, and beautiful toddler.

Happy birthday baby!

It's been awhile

2007-11-07T11:20:00.000-08:00

Well, it's been awhile. Life has been hectic. We've been looking at houses off and on for over a year now. One day Sean came to me with a floorplan on a piece of paper and said "What do you think of this." I said, it's nice but we';ll have to see it. The next weekend we saw it and loved it. It was about 90% done and not many choiuces lewft. The folowing weekend we put down a deposit on it aqnd got started on the contract. WOW. It's been about 2 months since then and we're now the proud homeowners of an almost 3,000 sq. foot home. It is still very surreal and doesn't quite feel like "home yet". The kids are LOVING it. We're at the end of a culdesac so our lot is huge and the kids can wear off their energy. It's a nice change from 5 of us being cramped into a 2 bedroom apartment. So, that's the good news.

The not so good news is Emma has been sick for over a month. We went to the doctor once a week for 4 weeks, first it was a cold, then ear infection, then Oops, it moved into her lungs and she now has pnuemonia. She was one step away from being in a hospital. Unfortunately she got denied for Synagis this year which is an immunization which helps porotect against rsv and other illnesses which are harder on kids with lung damage and compromised immune systems. We tried fighting it but not that she's sick they really won't give it to her. It's just SO frustrating. To make matters worth she hadn't been tube fed in over 3 weeks. She wasn't gaining weightm, but she wasn't losing either. Now, she's hardly eating anything, she's lost alot of weight, the doctor was concerned she's getting back to almost failure to thrive and wants her watched closely, and we're back to tube feeding. She looks anorexic. It's SO SO SO frustrating. It's hard to put things into prospective and remember just how BLESSED we are and know that in the end it will turn out alright. It just seems like one thing after another. On a good note after a million breathing treatments, 2 courses of antibiotics, an oral steroid, an inhaler steroid, and a few other things she seems to be on the upswing and we're hoping to avoid the hospital.

On the Caden front. I need to go down to the school district and see if they have a preschool class available for him. Hopefully I can get around to that this week and get something going. If not he'll be going to "real" school next year. YIKES! I can't believe my BABY is almost 5. Oh and he's a "genius", just ask him. He'll tell ya.

Lily is doing good. All attitude but still knows when to come up and plant a big ole kiss on you. We are having her evaluated for possible speech therapy. Her vocabulary is large but her pronunciation is not quite there. By 2 they said you should be able to understand 50% of what she says. She's borderline with family and we find outselves asking ehr "what, huh, say it again." alot. Strangers, forget it. She's talking abother language to them. So hopefully, we can get that going and get her into some speech therapy which might make life less frustrating for everyone. It's hard to understand her which gets her frustrated and it's a vicous circle.

Sean and I are doing well. Working, working, working. The business is holding steady even though the housing market stinks. We're actually managing to have a "record year" YAY. The commute isn't as bad as we though it would be from where we live to our business which is good, and since we drive together it also gives us some one on one time to be husband and wife and not just mommy and daddy so it's a nice break as well.

Other than thast, nothing much going on. I'll try and get some new pics on here when I get home, but wanted to update everyone. :)

2007-09-18T09:52:00.000-07:00

Emma is doing well with her eating. She's being given a can of pediasure by tube at night, but is taking alot more orally everyday. She's starting to gain weight again instead of losing and is up to 22 lbs. 1 oz. YAY

Week 1 weigh-in

2007-08-20T20:25:00.000-07:00

Unfortunately, Emma's down to 21 lbs. 14 ounces. so she's lost. she's easting pretty well though, we'll go another week and see if she loses less or holds steady.

Long time, no see.

2007-08-17T21:24:00.000-07:00

I know it's been forever and a day since I blogged, but really there hasn't been much going on besides this therapy and that. This appointment and that. The kids are doing well. Caden starts OT again when school starts. Lily is just as charming as always and it's been confirmed that she really was meant to be an only child. ;) And Emma got her first haircut which makes her look about 2 years old. Nothing major going on...until NOW!

I enjoyed being a stay at home mom for the better part of the past 5 years but I really felt like something was missing. I missed the adult interaction, I wasn't feeling AS fulfilled and quite frankly I think the kids were getting bored with me as well. I ended up going back to work at our business. My good friend Allie is our live in nanny which works out well. The kids adore her and it's a renewed energy in our home. I feel like our time as a family together is more productive and all around just better. Maybe because we appreciate it more since there is less of it. I'm enjoying working and the company is benefiting and the kids are enjoying their new buddy.

On an even bigger note we've begun the TUBE WEANING process for Emma. It's amazing. I debated whether to post or not on the off chance of jinxing it, but decided that it just may help somebody else out there in our same position. For the past few months Emma has been off all reflux meds and showing very little to no signs of reflux. We've tinkered with food here and there and half heartily began to tube wean before. Our thoughts were if we decreased tube feedings, instinct would kick in and she would eat. Wrong, she just lost weight, got frustrated, and we got frustrated as well. so we held off. We had some more testing done which has ruled out any remaining medical conditions which would prevent her from eating. It appears that her medical issues around eating are gone (at least for now). YAY! So we made an appointment with OT. Unfortunately, Kaiser doesn't really offer as intensive feeding therapy as she needs but her OT is willing to call me daily for reports, give advice etc. by phone. Which is cheaper than the $6,000+ out of pocket elsewhere.

So, Tuesday we had the appt. and we booth agreed that really she has the ability to eat and the will to eat but she's just not hungry enough. The best course of action would be to reduce (drastically) the amount of tube feedings to get her to eat more in the day. Just like last time. Unlike last time, we will allow her to lose some weight and see what she does and hopefully eventually she'll take more and more. this method models closely what an intensive inpatient program would do. The first night we cut her tube feedings in half. She was getting 3 cans of pediasure so we cut it down to 1 1/2. We did that for a few nights, than went own to 1. It's worked so far. She's eating 3 meals a day. Not A LOT, but for her it's a HUGE improvement. Last night she only got 1 can overnight. Today she ate a lot more. for breakfast she had a 1/4 waffle, 3 ounces of pediasure, and a saltine cracker. For lunch she had a box of juice (4 ounces), a half can of gerber graduates macaroni and cheese, for dinner we went out to dinner and she ate about a 1/2 cup of spaghetti, a french fry, and drank 2 1/2 ounces of pediasure. This is HUGE!!! She fell asleep in the car so we decided tonight was the night not to tube feed her overnight and begin our war against the tube.

I thought this day would never come. It's scary and invigorating all at the same time. I'm afraid to get my hopes up and then have to watch her backslide. I'm trying to stay guarded but it's so hard after day in and day out of feeding my baby through a tube and now finally seeing the light at the end of the tunnel. No matter what though, this is a step in the positive direction and we now know that it's truly only a matter of time before she will no longer dependant on her tube. It's not a matter of if, but a matter of when.

I will try and update at least once a week with her weight and her progress. On Monday, 8/13/07 she weighed in at 23 lbs. 7 1/2 oz. I will weigh her on Monday and hopefully she will maintain her weight and possibly gain and not lose! Continued prayers are always appreciated as always!

Caden's Autism Team Evaluation Results

2007-04-13T16:53:00.000-07:00

I'll give the nutshell since it was about an hour long. I went to meet with the team for results this afternoon. He is clearly autistic but not classic autistic. His vocabulary is way too high. He is definitely a sensory seeker and show alot of signs for adhd and ODD (oppositional defiance disorder). They're not ready to diagonse yet because of age, but once he starts school if he's exhibiting the same signs and not functioning well in school (at this point he wouldn't be, but i'll touch on that in a few) then will delve into that diagnosis then.

Anyways, Cognitively for speech, meaning understanding speech and able to carry on conversation he's at the 24 month level. This surprised me as I didn't realize he was that far behind, because he has a huge vocabulary but the understanding isn't really rhere. Gross motor skill he's slightly delayed at 36 months or 3 1/2 years. Fine motor skills he's a "solid" 24 months, not less not more. Once again we knew he was behind but putting an age on it really hits harder than I thought it would.

So, the plan of action. Take this report back to the school district and push harder to have him put into a special education class. The doctors have recommended 5 days a week. If they can't provide it push for them to help place him into a preschool specializing in special needs and for them to fund it. We are also at the point of possibly hiring an advocate as it seems this may be a long and dirty battle so to speak without one. At this point it's pretty evident that Caden would not do well i a school enviroment without a 1:1 ratio so ni the next year we'll be working on finding him an aid. Once he's in a public school (not just IEP) than they'll be "forced" to get him the help he needs. In the meantime, we chug along working with him in OT, and working on the school district getting him the resources he needs.

Long Overdue Update

2007-03-21T17:42:00.000-07:00

It's been brought to my attention by some EmmaFans that this update is LONG overdue. Partly out of laziness, and partly because not alot has been going on but alot all at the same time. Mostly, same stuff different day. i guess I'll start where the last update ended. We ended up losing our rat Squirt tragically and were all upset. Since then we have lost the other original rat Dora due to a respiratory infection. She went peacefully in my arms. We now currently have Kaiya (means little, she was a runt), Uboo, and "baby". they are so much fun and we never knew just how attached we would get. We even built them a new wooden cage with lots of toys and different levels!

I'll go through each one of us. Sean is doing ok but business is stressful as always. We've looked at houses and have decided with the market the way it is right now we'll be waiting to buy until it bottoms out most likely mid 2008. So, that's excited and a bit stressful. I have been doing alright. I had 2 "paralyzing" type spells and the doctors still don't know what's going on. I have had about a trillion med changes to help me sleep with no change. So, we'll be worrking on getting be healthier.

Caden is doing well. He still has good days and bad but he is so smart and his memory is sharp as a tack. He cracks us up with the things he says and does daily and is a joy to be around. He started a "play group" speech group and goes once a week on Thursdays and seems to really enjoy it. He'll also be starting occupational therapy for some sensory issues on Friday, for 45 minutes a week. His doctor's are less than thrilled with the school district and what they've offere and will be conductiong a 4 hour evaluation on the 30th to send to the district to get the ball rolling on getting him into an actual class. It was interesting to read the school's IEP report and a bit sad as well. On a side note Caden was born with a birthmark on his right shoulder which has gotten bigger/darker/hairier over the years. It's finally time to have it removed as there is a chance it could turn cancerous if left. Unfortunately, he'll have to go under general anesthesia for it, and that will be happening in about a month.

Lily is doing well, blossoming into quite th young lady. She is opinionated as ever and is still quite the Grandpa's girl. She's got him wrapped so tight around her finger it's not even funny. Her vocabulary is growing day by day and she is starting to crack us up with the things she says as well. She is also such the little mommy always wanting to make sure that Emma is okay and giving reassuring kisses when Emma cries.

Brings me to the Bemma. She is doing amazingly well. A month ago we were looking at wheelchairs and getting an idea for what she might need and what would be best for her. Fast forward a month and within the last 2 weeks she has loosened up, she has learn ing how to go from laying to hands and knees to sitting, and within the past few days has even learned to CRAWL. I am just beside myself with joy. Here's a link to her crawling: http://www.onetruemedia.com/shared?p=25d9003b1c2fa4e4dd037b&skin_id=0&&utm_source=otm&utm_medium=text_url
She can now say Dada and Grandpa. Go figure. The verdict's still out on mama though. She's gaining weight steadily and is FINALLY on the charts. She currently weighs 19 1/2 lbs and is about 27 inches. As for her feeding tube, there's still really no end in sight. She still refluxes quite a bit from solid foods. But if that's the worst of her problems, than I'm quite alright with that!

It's that time again for the March of Dimes WalkAmerica. I've created a team Emma Bemma and we'll be walking in April to help raise funds and awareness for the march of dimes. They do alot of work towards finding a cure for prematurity. I've created this video to show a little bit about why we walk.
http://www.onetruemedia.com/shared?p=257685853a0ddd344a596c&skin_id=0&&utm_source=otm&utm_medium=text_url
Feel free to share this link on your blogs, boards or through email. Every little bit counts!

Our home grew by 8 feet tonight!

2007-01-26T22:32:00.000-08:00

Sean and I have toyed with the idea of getting some sort of small pet for awhile now (i.e. pat, hamster, rabbit). The kicker was when our accounting manager at work asked Caden if he wanted a rat for his birthday. Then he got excited so there was no turning back. Of course rats are social animals so we had to get two. Anyways his birthday party is tomorrow , but we picked them out tonight. $150 bucks later and we're home with Dora (the bigger one) and Squirt( the smaller one) they are both females. Dora is skiddish and "screams", we're hoping she gets used to us. But squirt is very sweet and loves to be held and carried in pockets. :) She slept on Sean's shoulder for about an hour tonight while he snoozed on the couch. It was really sweet. The kids just LOVE them and Lily shrieks from joy!

Yo-Yo

2007-01-23T18:09:00.000-08:00

Well, Emma has gone up and down in weight worse than a yo yo dieter. The good news is the trend overall is upwards. She had a g.i. appt. today to burn off some granulation tissue (type of scar tissue) that formed around her button. She's 27 1/2 inches tall and 16 lbs 7 oz. (this bumps down to 16 lbs. Frequently). She is finally sitting unassisted (if we sit her up and bend her knees. hehe) Nowhere near standing, crawling or walking. She doesn't even roll, she scoots around on her back which has left an almost bald spot. It's kinda cute. Right now she is on 50 cc/hr for 20hr/day. This equals about 660 calories. She needs about 750/day. Her doctor typically switches tubefeeders to pediasure at 1 year and she is only a month away so she'll be switching within the week. The good news is Pediasure is covered by insurance so we'll have a copayment but better than the hundreds of dollars on formula each month! So, she'll start on Pediasure 3/4 strength, 50cc/hr for 20 hours. This equals 750 calories/day.

Some more good news. Emma is FINALLY on the growth chart. WOOHOO. She is 25% in height and 3% in weight (skinny minny), as far as height/weight proportionate she is 10th%. Not too shabby! Her weight goes up and down but the overall curve is upwards so we're thinking positive.

On a semi blah note, Emma is still not tolerating any solid foods. She has shown a lot of interest in eating as does really well, but anything except water makes her reflux flare up bad. We now are not even guesstimating a date to take out her tube. We will focus on just getting her the nutrients she needs to grow and meet milestones. Her prevacid is being upped to 1 solutab, twice daily. We're also throwing carafate back into the mix. Hopefully this will help keep her reflux at bay so we can introduce more solids and eventually wean from the tube. Like I said, we're not really aiming for a date other than "before she starts Kindergarten", according to the doctor. I don't mind the tube at all. It makes it a lot easier to not even think about it or to not dwell on it.

So, overall it was an okay appointment. We go back in 6 weeks again. On a side note, the new pump we got doesn't work right so it has to be sent back and an infinity needs to be ordered. So, we have the pet pump for a few more weeks. It never ends. lol.

Long overdue Update!

2007-01-13T21:49:00.000-08:00

Well, once again this is a long overdue update. I wish I could say it's because all was well, but unfortunately that's not the case. This may jump around a bit so bare with me. I will also be copying and pasting some things from emails and posts on message boards for more accurate descriptions. Emma ended up doing well healing from her second operation from her button. It looks great. There is some granulation tissue we are dealing with but overall it's pretty "nice" looking. We're also loving the Mic-Key button. It's much much easier.

On a not so good note about 3 weeks post surgery she had LOST weight. She lost 1/2 lb from the time of her surgery. Not good considering she's on continuous feeds. Here's an excerpt from a post back then.

"Anyways, right now she's gettin 45 cc's (1 1/2 ounces) every hour for 20 hours at 20cal/oz. = 600 calories a day. We're bumping her to 60cc's/hr. = 40 oz./day = 800 calories day. Hopefully she can handle the increase of amount. If not we'll have to up her formula from 20 cal/oz. to 24 cal/oz. which would be a step backwards. Her ped is thinking we're looking more realistically until age 3 or so rather than age 2 to getting her tube out. She says even that given her history is optimistic. She is also getting a referral for OT. YAY. On a good note she can now say Mama, Dada, and Baba and knows what they means. So while she can't really sit and is nowhere near crawling we have one smart cookie!"

So we're a bit over a week from when I wrote that. She's now getting 50 cc's/hr. for 20 hours. We have had to slowly move her up as she was not tolerating the increased dose well at all. We have also laid off the solids since it was causing her reflux to flare up way too bad. With all that said she HAS gained 8 oz. (half pound) in a week. YAY! She got her referral for OT but I still need to make the appt.

Along with the weight gain issues Em is also having some muscle stiffness. Could be caused by poor positioning while in the nicu, or the fact that she was premature. There is conceren though that she has a mild form of cerebral palsy. She is very stiff, had clenched fists more than 50% of the time, has rather spastic movements, delayed motor skills, and g.i. problems, along with failure to thrive issues. All these lead to cerebral palsy. I understand a diagnosis won't change anything but it's alot to take in. I know if she has it that it is a mild form and she will benefit from the OT and PT but it's just one more thing. It's also one of those things that there is no telling why she got it. I know she's definitely high risk for a complicated pregnancy/delivery, along with being a micro preemie. It probably didn't help that she needed to be resucitated on 3 different occasions. ::sigh:: Oh well.

Now, for more good news. We FINALLY got her new pump. We're still waiting for the bags to go with it so we can't use it yet, but getting it is a huge accomplishment. Somebody else who has Kaiser asked me how I got it because they were dealing with some same issues as we were being denied it. For those of you wondering, here's how:

"Let's just say it took a LONG time and quite a few appeals to get one. I had a G.I. willing to work with me. They CAN get one and WILL get one if you bother them enough. Basically have your g.i. write a prescription stating exactly WHY you need a non-drip chamber pump. Errors, mobile child, etc. When I say exact, I mean EXACT. Then it goes to the DME. Then you need to call the DME over and over and over to make sure they send it to apria. Then apria will tell them they don't cover them, don't have them, and can't get them. The DME will NOT call you back. You wait a few days/weeks and then call the DME back. Then call Apria back, then DME again. They tell you no. You go through this process about 6 times. FINALLY, you get ahold of someone WAY high up at Apria who approves the "upgrade" and waives the upgrade fee. The GOOD new for you (and I should post this somewhere here and meant to) Apparently, I got through to the guy high up. Well, my G.I. did and they have now contracted with Zevex as of the beginning of January. Over the next month or so they will be phasing out the Kangaroo pumps and bringing in Enteralites. They will eventually get the infinities and phase out the regular enteralites as they get more infinities. Like I said this was a LONG process! You can fight like I did, or you can wait a month or so until the new pumps start arriving. I would call you contact at Apria and ask though. I know our area is starting to get them the end of this month. I got mine today, but it was special ordered! If you need help or specific questions I'll be able to answer them if possible."

So, that's about it for Emma. Lily is doing well. She's our little firecracker though! Caden is a handful as always but so much fun as well. We have another IEP meeting for him. We're also going to be starting OT and a social skills class for him as well. We're working on getting him into headstart from 12:30-4:00 p.m. mon-friday as well. Both for his sake and mine. He thrives on structure and interaction with other kids. We just have to find the right enviroment for HIM. Hopefully, things will start falling into place for him though. My health issues are getting better. I had a few medication modifications and my symptoms are quite a bit better. Still having some trouble but nowhere near how it was. I am able to function which is something I won't take for granted anymore.

One last update. The kids birthdays are all quickly approaching. Caden's 4th birthday is the 31st, then Emma's 1st follows 2 weeks later on Feb. 5th, and last but not least Lily will be turning 2, two weeks later on March 5th. We'll be busy for awhile. The next updates will most likely be birthday updates.

Em has a Mic-Key

2006-12-20T22:40:00.000-08:00

Everything went well! Yay.

Last night we got a call saying to check in at 1:00 p.m. and surgery would be at 3:00 p.m. We made Emma NPO after 9 a.m. We checked in got back onto the peds floor with some nurses who knew us (there first comment was "she's back AGAIN?"). Thiis time we were in a room with a roomate. Another baby younger than Emma it looked like. I don't think the parents spoke much English so we didn't really talk. Just the obligatory nod and smile of understanding.
Emma definitely is aware of what is going on now. She knows the hospital and she knows the rooms. It's really sad actually. She wouldn't let us put her down and cried/screamed/whimpered everytime I went back in her room. We spent most of her pre-op time walking the halls of the peds unit. A volunteer gave her a book donated by a family who had lost a child. She really enjoyed the book. she also got an octopus stuffed toy that squeaks and rattles. It had a sticker that said "I squeak and rattle" so we put it on Em's forehead. It was pretty funny (and accurate at the time). She got her I.V. which of course was a nightmare. I was hoping they would wait until she was sedated but orders were written for pre-op and turns out the OR was running late anyways so it was probably a good thing. She finally did fall asleep RIGHT before we headed down to pre-op.
They took us down around 3:30 p.m. A half hour past when her surgery was scheduled. We waited around down there talking to nurses and the anethesiologists (same as last time). She finally went in for surgery around 4:45 p.m. She liked the anesthesiologist and didn't cry when they walked her back. We headed to the waiting room and figured on about an hour. Sure enough an hour later at 5:45 p.m. Dr. Duh came and got me and brought her Mic-Key box out. Explained some things and then brought me back to her. Emma did really well during surgery and being extubated. She did require oxygen for some time as she was in the low 90's for awhile oxygen saturation wise. After about half hour Sean got to come back too. By then she was stable and only moaning a bit. She had a good bit of tylenol in her but she is always weird when coming out of surgery. Somewhat moaning/crying/fighting. After an hour we went back upstairs.
Her button looks GREAT. Some redness but that's normal. SO much better than the long peg tube hanging down. Also they burned some granulation tissue with silver nitrate while in there too. She was going to be started on pedialyte. 30 cc's/hour for one hour and then onto formula 30 cc's/hour until morning. Sean and I had already decided I wouldn't stay tonight. We had a rough night last night. She was refluxing bad which she hasn't done in awhile. We think she aspirated (her lungs were gunky sounding today before surgery). I was up with her most the night and "slept" on our couch with her on my chest and every now and then her shrieking/crying from pain and arching her back. Poor baby. I need my sleep badly so I came home. Also I KNOW I couldn't sleep with a roomate. I HATE leaving her there but really I need my sleep today. I'm like a walking zombie. She was crying a bit when we left but her nurse was with her so we felt okay. I'll pick her up before 10 tomorrow. Hopefully she can get some rest and some good meds while she is still there. Here are some pictures from today.

Waiting to go down to Pre-Op.

"I speak and rattle!"

Em's new button.

Hospital: Take 6

2006-12-19T10:33:00.000-08:00

Well I’ll touch on me first. I saw the cardiologist. We went over a bunch of what if’s but not probabilities. He set me up for a 24 Holter test with a small battery pack to wear around my waist and 5 electrodes for 24 hours. If I have an episode I’m to press a button and record in a diary the time what I was doing and symptom. The monitor records constantly but this helps them to identify if the symptoms are related to the heart. Probably not but we’ll try it. Surprisingly yesterday was a really good day and so far so good. I have one very small short dizzy spell last night while cooking. Go figure! We may be doing the tilt table test next to see if the results vary. Otherwise I wait to hear from neurology to reschedule. My surgery was scheduled for today. It’s somewhat sad but somewhat a relief. I’m glad I’m not having major surgery but like I’ve said before it’s at the price of not knowing what’s going on with me and having no real explanation!

Onto Emma. We’ve been having problems with her Y-port attachment at the end of her peg tube. This is the piece that has a “female” end which the “male” end or “Christmas tree” part of the tube on the feeding bag plugs into. It is stretched out and the male end keeps sliding out and leaking. We’ve been taping it which has gotten old quick. We spoke with Em’s main G.I. who said call Dr. Duh and see about getting a button now since we’re having problems. So I did. He likes to wait about 12 weeks before switching to get a good tract formed but we discussed doing it earlier.

Anyways he had a no show for a surgery pre-op yesterday so she is booked for tomorrow for the OR to have her peg tube switched out for a button. YAY. We have to be at Bellflower at 10 a.m. in the peds unit. UGGH. Hopefully it’s a day surgery barring no complications. She has to be NPO after 8 which are fine since that’s when we unplug her for her 4 hours anyways. She’ll go under general once again. Prayers, that all goes well and that it is uneventful day. We are so thrilled to be having this done right now. The peg tube has been okay but it is somewhat of a pain and it will be nice to have a low profile button instead of a tube especially while she’s not hooked up!

This is what she has NOW

This what she will be getting TOMORROW

No news is good news I guess.

2006-12-15T08:32:00.000-08:00

We're just plkaying the waiting game. I have had a few "good days" the past few days. Meaning not too manbyd izzy spells and no real BAD headaches. And no falling. But I woke with a major headache today so we shall see. I saw my general practitioner today. She is stumped as well. she did a baseline EKG which appeared to be just fine. She also put in the referral to the cardiologist and I need to call later today and get an appointment. So now we want to see the nuerologist and the cardiologist. She mentioned a "tilt table test" . I guess it's just that they strap you to a table and keep turning and tilting it to try and get you to a) pass out b) have a seizure or c) do nothing. Sounds like a hoot. ::sigh:: She's not sure if that's what they'll do but says it seems like the next logical step. So, still waiting. Everyone is too afraid to prescribe anything for the headache or dizziness or even my sleep issues. Nobody knows what's wrong so they don't want to make anything worse. While I agree with them there are times where I am so miserable that I'm willing to take about any risks/side effects, but maybe that's the symptoms speaking. So, that's it for now. I'll update later about the kids with pics since I have managed to steal Emma's blog.

I've been Tagged!

2006-12-09T12:28:00.000-08:00

My Friend Susan tagged me so here it goes.

1. Egg Nog or Hot Chocolate?

Both, but I can only drink a little egg nog at a time. Must be store bought, no home-made. I love hot chocolate but it has to have TONS of ooey gooey marshmallows on top!

2. Does Santa wrap presents or just set them under the tree?

This one is hard. Growing up my mom put most of our gifts from "Santa" and left our stockings filled on the couch. I don't ever really remember "believing" in Santa but perhaps I did. When I had my first child I decided that I would not really do the whole Santa thing. We would enjoy the fun of Santa and the reindeer and the Christmas songs but we would celebrate the birth Of Jesus Christ and all that comes with that.
Then I met my husband and we shared our first Christmas together. By this time I was pregnant with my second child, our first. He was adament about there being a Santa Claus an didn't want our kids to miss out on it. Throw in that Grandpa Nick, my father in law is an avid Santa fan and I was outnumbered. We agreed that there could be Santa. I would not tell our kids that there is no Santa but I would not encourage it either. I will teach them about Jesus' birthday and we will celebrate that as well.
Mommy and Daddy bought the kids about 2 gifts each, and the grandparents are ddoing the same. My father in law went CRAZY in KB Toys and "Santa" will be bringing the kids alot of toys Christmas morning. We're undecided how to handle it in the future. I don't really want to be "out done" by Santa every year, and would rather keep Christmas more about family and a few gifts here and there. In other words I don't want my living room looking like Santa's workshop exploded in it!

3. Colored lights on tree/house or white?

White. I think they're so elegant and they don't clash with the ornaments. On the outside I'm really good with either but more inclined to do a variety of colored lights.

4. Do you hang mistletoe?

No, but I really should!

5. When do you put your decorations up?

The weekend following Thanksgiving weekend.

6. What is your favorite holiday dish (excluding dessert)?

Mashed potatos and gravy. Mmm.

7. Favorite Holiday memory as a child.

I don't recall a whole lot, which is strange. But I do remember wanting a doll stroller REALLY badly. I saw it in my mom's closet and she convinced me it was for my cousin. I was heartbroken. She wrapped it up in a huge freezer box with TONS of newspaper and I was SO thrilled and surprised to get it Christmas morning!

8. When and how did you learn the truth about Santa?

I don't ever really remember believing. I do remember watching my mom stuff our stockings and put them on the cuch.

9. Do you open a gift on Christmas Eve?

Yes, we go to my husband's families house and have their big to do. We don't open family gifts until Christmas morning except the kids get christmas Jammies.

10. How do you decorate your Christmas Tree?

We have a fke tree this year. Wahh. But we love noble firs. WIt is pre-lit with white lights, star on the top, plastic bulbs this yea and each year we all get one new ornament which represents something we enjoyed or were into that year. Those are the hallmark ornaments usually.

11. Snow! Love it or Dread it?

Love it! Wouldn't want to live in it ALL the time though.

12. Can you ice skate?

Yes, it's fun too!

13. Do you remember your favorite gift?

As a kid probably an easy bake oven. I LOVED that thing, along with my, My sister doll. Until Chucky themovie came out!

14. What's the most important thing about the Holidays for you?

Reminiscing with family and celebrating the blessings from the year before. Or in this years case, celebrating that we made it through the year. :)

15. What is your favorite Holiday Dessert?

Umm, don't really have one. Used to be my grandma's Pecan pie.

16. What is your favorite holiday tradition?

We're just starting out our family traditions so to speak, but I'd like to start a tradition of the kids getting new coordinating Jammies or Jammies of their favorite character each Christmas Eve. My husband getting a new pair of funny/christmas boxers in his every year. And watching the polar express the night before Christmas Eve with the kids all snuggled together.

17. What tops your tree?

An ugly, cracked in the back lighted star that isn't lit this year. I'm having a hard time finding a new one that I like!

18. Which do you prefer giving or receiving?

Both, I love watching the joy people get from receiving gifts. I also enjoy hand picking something special for them. But I'd be lying if I said I didn't like tearing open into wrapping paper either!

19. What is your favorite Christmas Song?

Breath of Heaven by Amy Grant. I was in a Christmas play with this song when I was about 8 and have been in love with it ever since.

20. Candy Canes! Yuck or Yum?

I like them, not love them.

Tag you're it! (Copy, paste and share on your blog) Leave me a comment with a link to your blog so I can check out your answers too!

Double Edged Sword

2006-12-08T21:15:00.000-08:00

Well, well, well. After several messages to the Head and Neck Surgeon I got a call back. My CT scan was indeed clear. There was slight bit of mucous in the frontal sinuses but it was considered a normal amount. The Dr. was quite baffled. He said to me he had to keep going back and forth between the scans and even double checked to make sure the CT scan was mine. He said he has never seen this before. He said it appeared calcified at the bottom and that it was completely "plugged" upon his physical examination. Remember back to the uncomfortable probe up the nose and down the throat? Yep, that is the one. He said he has been trying to wrap his mind around it all day before calling me back and letting me know that the surgery has been cancelled. I burst in to tears. Some shed of relief that I won't have to undergo a risky surgery, others from frustration, pain, and fear. The fear of the unknown. He is having me come in to have my hearing tested and to check my ears again but doubts that he will find anything. He apologized. What for? It's not his fault. He said he wishes me well and will be discharging me from his care once I have the hearing test and the ear exam.

He did say that my symptoms baffle him with everything showing up "clear". He feels it is a neurology issue or possibly a cardiac issue regarding circulation. My referral is in for neurology. I should get an appointment date on Monday. I'll be making an appointment with my general practitioner to get a referral for the cardiologist. In the meantime, I wait sicker than I was before I ever met him and left right where I started from.

The many prayers have been appreciated and continued prayers will be welcomed.

Tired of this roller coaster

2006-12-08T03:45:00.000-08:00

I am tired of this roller coaster. I just want off of it. It's 3:46 a.m. and I woke from a haunting dream around 2:30 a.m. I tried to go back to sleep but drifted back into sleep in the same place I left off each and every time so I quit trying. So here I sit. Sean is snoring peacefully beside me. In the background there is the click of Emma's swing (where she sleeps peacefully through the night now, yay!) and the whoosh of her pump. The soft buzzing of the DVR is providing some much needed white noise. It should be peaceful but it's not. My head is pounding, my body aches, and speckled blackness like a TV show with bad reception succumbs me every now and then. I feel like my body is failing me.

Over the past two weeks my symptoms have significantly worsened. My equilibrium is completely off. I have fallen more times than I can count on both hands. I no longer shower standing up (Thank God for the removable shower head). I often find myself dizzy and catching myself. I no longer bend over for a fear that I will topple over. I don't drive at night because my vision has become more blurry and I'm pretty sure I won't be driving for quite some time. In fact, Sean is taking my van to work tomorrow. I get nauseous at any slight movement. And, finally, I find myself on the couch in a fetal position hiding the pain and tears more often than not.

Yesterday was to put it mildly horrible. I went into the office to help. Although, I wasn't much help. We went to grab a bite to eat. We stopped a few times walking in for me to "catch a few breaths" and wait for the wave of nausea to pass. The second we walked in I had to run to the restroom to "relieve" myself. I then ate most of my meal and continued to feel dizzy, nauseous. I guess I should have prefaced all of this with the fact that I am NOT pregnant, can NOT be pregnant, and probably will NOT be pregnant anytime soon or ever again. That's another entry in and of itself that I'll share when the time comes, if ever. Back to yesterday. We went back to Sean's office where I spent the next half hour on the nurse advice hotline since my general practitioner was out for the day. Like always they gave me the standard head to the E.R. after playing 20 questions with me. Sean's grandma was with the girls and Caden was at school still. Sean dropped me off at the E.R. and headed to pick up Caden and relieve Grandma.

I checked into the E.R. and of course it had to be one of the busiest nights they've had all month. Go figure. They had me up and down about four times just to take information, get vitals, and put a wristband on me. Oh yeah, to make me sign my life away and say I'll pay the bill. What's another bill at this point, right? So, I'm surrounded by a kid with a cut on his finger (looked like a paper cut), a woman in front of me who is obviously developmentally disabled (which of course, I have nothing against but please don't talk to me when I feel like puking all over you and I feel like I'm in the twilight zone.) a few people with what seemed to be the flu and Ms. Proper and her entourage (5 kids I assume) who come RUSHING in from the medical offices because she has an obstructed bowel. At which point the nurse explained that she had to wait like everyone else and that this is the emergency room. First come first service and emergencies take precedence. I thought I would faint right then and there and that they'd have to call security on who I assumed to be her son. I felt like yelling, "Somebody, call a doc Ms. Proper can't take a dump and while you're at it give her some hot tea and a warm water bottle to put on her tummy to shut her up while we all play the hurry up and wait game." I restrained myself, and instead remained slumped over in my chair next to the DD woman who wanted to tell me about her tennis shoe slippers that she got at Kmart for $10.

I tried to call Sean to see if he can come wait with me only to find out my phone is completely dead. In the 3 years I've had it I have never let it go completely dead. Cool, no way to call him. No way for him to call me. After, oh, I don't know how long since I can't tell the time I get called back. They have me stand behind a line and are doing an eye test on me. I tell them I'm dizzy and I really can't stand up. So, of course they say, "try". I tried, apparently "failed" part of their exam, have to grasp the wall, lean again it to prevent myself from falling. I start to cry since my body is going numb and I feel like I'm about to pass out. The nurse stands there and looks at me like I'm just taking a break for the hell of it. The Dr. who was sitting behind me rolls over on his chair and asks if I'm ok. I know if I speak I fall. He says, "nurse, can you get her a chair?” Then he realizes he should just stand up and give it to me. Sure enough, I started hyperventilating, sometime after the fact that I felt like I would pass out and nobody was helping me to move or sit and I got scared. Go figure.

I go to the room. Wait awhile on the gurney using the gown as a pillow. The doctor comes in and I immediately recognize him as the less than pleasant individual who "treated" me when I had complications during Lily's pregnancy. Not to worry he came in said so you're dizzy? I said yes and he said be right back. Nurse walks in and I ask the nurse for a new doctor. She says the ER is full and I'll have to go back into the waiting room to be reassigned. I say "No, thanks." and decide to deal with the doctor I will kindly rename Mr. Whack. So, Mr. Whack comes back in, asks a series of questions. Asked me if the room is spinning about 8-10 times. Each time I tell him no. He says, "Are you sure?" Nope, I'm not sure, you got me. I forgot it was spinning. "No doc, still not spinning." "What meds are you taking?" "I'm taking x,y,z, oh and I forgot the rest of the pharmacy as well." He says, let me go look at your records. Twenty minutes or so later he comes back in. "Well, I see you had a CT scan done and you have surgery scheduled." Yep, I told him that about an hour ago too! He says, "And the room isn't spinning? Can you see how many fingers I'm holding up"? At this point I was annoyed, especially with him and decided I might as well have some fun. He holds up two fingers. My vision is blurry but I can still make it out. "You're holding up two, it's kind of blurry but it looks like you might be growing one on the posterior side of your hand." He looked down at his hand puzzled and walks out of the room. I chuckle to myself. He comes back in, ordered another CT scan for me to make sure nothing else is happening up there. I ask to call Sean.
Called Sean, Grandma hasn't left the house, He's putting the girl's down to come be with me. CT scan guy comes and puts me in a wheelchair, he's pretty nice, and we’ve met before. The machine was decorated in garland to make it a bit more festive. We do the scan, I look at it, everything looks about the same, but hey what do I know. The guys looks at it and tells me my sinuses look like they still have some shadowing in them (read=sinus crap). I go back to my room and Sean joined me about 20 minutes later. Mr. Whack walks back in and looks surprised to see Sean there. He stands in the doorway and commences to tell me that my CT Scan was normal, that my sinuses are completely clear and to call my doctor and cancel my surgery and that it's probably just been a bad virus all along which is in my middle ear causing my problems. So, Sean asks, "Could they be lasting over a month?" Mr. Whack says "Well, um, I think so." Yep, real reassuring there doc. He "prescribes" something comparable to Dramamine, over the counter. Tell me to follow up with my head and neck surgeon and puts in another referral for a neurologist for my "issues".

$100 later we leave with really no more information than going in. I still have all the above listed symptoms; we're more confused on my "sinus issues". Obviously, thrilled if I no longer need surgery, however, now perplexed as to what the heck is really going on with me. Sean walks with his arm around me to the car so I don't fall. We drive with my head out the window like a doggy to avoid me puking in the car. Go through a drive through. Make it home and I immediately start freaking to get out of the van as not to christen it with any bodily fluids. I then flush out my system a bit into a paper bag I'm holding, walk 50 more feet and fertilize the bark covering in the planter a bit. Feel a bit better, head home, eat dinner and crash in bed to have haunting dreams.

I will spend the bulk of the day today I'm sure on the phones calling my doctors, having my CT Scan read by somebody who I feel is a bit more qualified, praying for no surgery, hoping for answers, and resting in bed since Sean's Grandma is coming up and I'm not allowed out of bed today. If you've made it this far I both congratulate you and apologize to you.

Goodnight and Good morning.

Spoke too soon..

2006-11-21T10:24:00.000-08:00

Well I spoke too soon about the pump. Night before last it errored about every half hour to hour which woke up em and me and all that nit so fun stuff. It was also pumping more than it should faster than it should. The home health care lady put in a call for a replacement to Apria and they were supposed to call me. NOBODY called, surprise surprise. Unfortunately, I woke up to our refrigerator bein dead and warm yesterday so I had to deal with trying to find a new that we could get by today and couldn't deal with apria. So anyways, We set up her pump last night and it kept having an occluded error, we checked everything, NOTHING was occluded, we even tried changing the bags and no deal. Then it would switch the other error. So annoying. so we laid off the pump and called apria after hours. The drrive had a few more calls then had to go back to the warehouse to get a new pump. He didn't get here until about midnight. so she started her feed a few hours late. This pump is the Kangaroo pet pump, I guess the one before was a slightly larger version. He said this one is for babies. It's actually pretty small and cute but still not the one we want/need so we'll be working on it. Here's for the good news. We got it all set up and after toying with it and a million errors got it working. It ran all night with NO erros, and it delivered the right amount of formula in the right amount of timie.YIPPEEE. We set Emma and the pump up for the swing hoping it would help her sleep and she slept ALL night. Double Yippee. I unfortunately didn't get to sleep until 2 a.m. and woke up at 7:00 a.m. Still better than before.
Unfortunately, Emma's reflux isn't any better. She doesn't seem to be puking/spitting up as much but more silent refluxing. We can hear it come up and then hear her choke/swallow it down whilst having this nasty look on her face. She was also in quite a bit of pain/discomfort yesterday. Poor baby. Last night I secured her tube in a million places so it wouldn't pull. It looks red/raw last night and I don't want it getting infected so hopefully that will help. She seems to throw up more after bottles. We don't really see her refluxing with the tube feeds. If I thought it was best we would go all tube feeding but I'd really hate her to lose the oral abilities she has. So we'll keep bottle feeding and I guess just dealing with the pain of reflux :(
On a side note, there is a piece at the end of the peg tube which is an attachment to hook the feeding set( tubing, bag etc.) to. There is a little plug which plugs it when not in use. It broke off yesterday so we were using it just not connected to the attachment. this just meant we had to be super careful not to lose it when it wasn't in. Yep, you guessed it. I went to flush her peg out after her feeding last night and couldn't find the darn plug. So I frantically looked with syringe still attached to the tube. No go. So I taped it all up with gauze and called the home health nurse. She was on her way down south and couldn't help but had me call the nicu. Anyways, they had the piece I needed. Hopefully it will fitl. It looks bigger but we'll give it a go! Oh, we did get to see one of our favorite nurses though. :)

More Pictures from today.

2006-11-18T21:40:00.000-08:00

We're Home!

2006-11-18T20:29:00.000-08:00

We're home and settled. After making about 20 calls to Apria we finally got the Kangaroo Pet Pump delivered. I'll probably have to call on monday about 20 more times to have them exchange it for the more portable, smaller Zevex enteralite infinity pump. In the meantime her pump is easy to use and will get the job done temporarily. I cleaned her g-tube site tonight and it looks GREAT. It had very little discharge. I placed a new piece of gauze (probably won't after tonight) and got her all set up for her feed. She'll have 30 cc's (1 oz.) an hour for 12 hours overnight. So far so good with NO reflux or spitting up since her surgery. We are SHOCKED and really hoping that this helps her reflux as well. Even more shocking she took 6 1/2 ounces from a bottle from the nurse today. NEVER EVER EVER has she taken more than 4 ounces at a time. Even better NONE of it came up. We are thrilled and really know now this was the right thing to do. Her g.i. doesn't want us overloading her stomach though so we're not to allow her more than 4- 4 1/2 ounces more awhile to give her stomach time to get used to the g-tube and to heal and to stretch a bit more. If she starts refluxing more than we're to offer more by g-tube slowly until she doesn't reflux as much. Anyways, she is so used to having a bottle every half hour at night for comfort and soothing that she is really upset about not having it. I'm sure at this point alot is behavioral as well and it will just take a bit of "training" to get her to go longer at night without waking and to fall asleep without a bottle. In the meantime I feel like a mean mommy. :( Here are some pictures from right before she was discharged and some tonight during her dressing change.

The night went well

2006-11-18T09:57:00.000-08:00

Just got home again. emma should be discharged later today hopefully. I'm still dealing with the home health company to get her supplies. Hopefully we'll have them BEFORE she is discharged. She did well overnight. They started her on 15 cc's pedialyte/hour for 3 hours. Then 30 cc's/hour for 3 hours. Than half strength formula 30 cc's/hour for 3 hours. Then full strength 30 cc's/hour for 3 hours. that ends her first overnight continuous feed. She should be back to oral feeds for the day. The doctor did mention we could bolus feed or use the pump to feed as needed throughout the day as well but to try to keep her nippling and taking oral feeds at least 3 times a day. She slept for 2-3 hours at a time last night which is a RECORD for her. I'm hoping we're onto something here and it's not just the morphine. Oh, and even better, no reflux yet with the tube feedings! Hoping that's not just a fluke either. I'm really starting to think we did make the right choice. Hope it continues to go well. Sean and i are doing well. We're tired, emotionally, physically, mentally, but hanging in there. Caden and Lily appear to be doing well and I[''ve showed Caden pictures of Emma's new feeding tube and he understands that is is to help get milk in her tummy and doesn't seem to bothered. He asked if it hurt her and I was honest. I told him that it hurt at first but she got medicine and is now feeling better. He also saw pictures of her smiling and playing with her giraffe toy with the tube in so he seems to be ok. I wanted him to know before he came home since he doesn't do well with things being sprung on him. I'm sure Lily will be just fine as well.

She was so happy when she woke up and saw me this morning :)

Here she is resting peacefully right before I left this morning:

Phew! She has a G-Tube.

2006-11-17T20:47:00.000-08:00

Just updating somewhat quickly before I head back to the hospital for the rest of the night. We arrived at the hospital around 9. she was a direct admit into the peds unit, 8west. We settled in quickly and played the hurry up and wait game for the next few hours. They took her vital signs, got her prior medical history and anesthesia history from us and weighed her. She weighed in at 13 lbs. 10 oz. So, she has gained 2 oz. in about 2 1/2 weeks. (Keep in mind she is on 24 calorie formula). Anyways, she had a OR slot for 12:30p.m.

We were taken down to pre-op around 11:30. She hadn't had an I.V. started or anything so we just played the waiting game there as well. We met both anesthesiologists (one really fell in love with Emma) and they explained what they were going to do. They decided with her prior history of having problems being extubated and coming out of anesthesia that they were going to do a modified "conscious sedation". She was put out with gas, but was not administered any narcotics. The procedure was done with a local anesthetic. She was only given a tylenol suppository after the surgery for pain. She was ordered morphine but as far as I know has not been given any. That will change when I get back to the hospital!The procedure itself only took about 20 minutes or so but the lady who fell in love with Emma decided to "drag out" her time in the OR to make sure they wouldn't have any problems. she wanted her FULLY awake before heading to post-op recovery. She did fine with extubation. She had a few "blue spells" where she needed stimulation and they kept her on oxygen until she went into the recovery room about 30 minutes later. Her anethesiologist followed her there and stayed with us another half hour. When she got into post-op they called one of us back so I went while Sean stayed in the waiting room. Emma was quite upset (and hungry) so I rocked her and we made a make-shift pacifier out of a bottle nipple stuffed with gauze and taped. She doesn't take pacifiers but this dipped in glucose water seemed to do the trick. We kept her on "blow-by' oxygen for another 30 minutes. I asked them to bring back sean after about 15 minutes. I was supposed to leave, but I layed low and nobody said anything. After about an hour and a half we got to go back up to her room. We got her all settled in and talked to her doctor a bit about after care. I've done so much research that most of it was just review. We got her content in bed and then Sean and I left so we could go see the kids and grab dinner (Caden was at preschool and Grandpa picked him up and Lily was with Grandpa since last night).
Sean and I had a nice dinner at Woodranch (a good steakhouse) and then met up with Grandpa and the kids. We came home shortly after to put the kids in bed. I have a few things to get together and then I'll be heading back to the hospital. Emma currently has 2 lvns and an RN asssigned to her since she tends to be "high maintenance" while in the hospital so I'll be heading back to relieve them and spend some time with my baby.
On a side note we're having trouble with the Home health care people and coordinating getting a pump. They tried to deliver the WRONG pump last night while we were gone. I called them and they were supposed to call back and never did. Then we spoke with our case manager today who said she ordered the Zevex pump NOT the Kangaroo and said she'd call somebody and to call them tomorrow for it. When we got home Apria had delivered 25 pump bags for the kangaroo pump and left them on our doorstep. UGGH. I hate dealing with Apria. This is the same company who took 5 months to pick up a breastpump and couldn't seem to show up after schedule MORE than 6 pick-up dates. This should be interesting. Her G-tube looks great along with the site.
Here's a link to some pictures from today. Hopefully, it works!
http://smg.photobucket.com/albums/v225/munkeesmama/G-Tube%20Surgery/?action=view¤t=G-tubeSurgery009.jpg&slideshow=true&interval=3

It's actually happening!

2006-11-16T15:45:00.000-08:00

The home health people just called. They'll be delivering Emma's Feeding pump tonight (kangaroo pet pump), bags, and supplies. I guess we'll have to get a prescription and jump through hoops to get the zevex enteralite (more portable, smaller pump). YIKES. It's actually happening. I'm choking back tears as I write this. I KNOW this is the right thing for her (getting the g-tube) and up until now I've been okay with it, but I guess I'm getting those last minute jitters, 3 people from the hospital have called and the home health people have called twice. I don't think I've been this nervous for her since she was born!

Quick Update

2006-11-15T13:26:00.000-08:00

Just a quick update. Emma had her 2nd synagis (rsv) shot for the season yesterday. This also meant she got weighed again. she's still holding steady at 13 lbs. 8 oz. she's been the same weight for just about 2 weeks. This isn't good but it's better than losing. I spoke with the G.I. , Dr. Duh (Said Do, not duh) LOL. Anyways, she will be a direct admit into the peds unit at Bellflower hospital. We're supposed to meet him there at 9 a.m. He said he'll be there to do that and to coordinate her care. He also said that he'll "put her name in the hat" so to speak to see what time he can get her into the OR. The procedure itself should only last 20 minutes or so, but the anesthesia and recovery will take longer. We're hoping to have her home sometime Saturday and he seemed eager to make this happen as well. We were not too fond of this hospital or the staff so I'm a bit anxious about it. Pray that everything goes fine and there are no complications. Pray that we also get the mini-portable pump we want andd that everything goes through fine with that.

On a side note the kids got a bunkbed and we're all loving it!!!

G-tube Surgery!!!

2006-11-11T21:27:00.000-08:00

Well, we got the date for the g-tube surgery. She will be admitted on Friday the 17th. We don't know what time it will be yet, we should know early this coming week. Pray that nothing happens which would make it be cancelled and pray everything goes well with it. She will be having this done endoscopically. The doctor felt that she would probably be ready to have the g-tube removed around 2. If it happens before than great but that's what we're aiming for. We also discussed when she will go from the peg tube (long catheter type tube) to a button (flush against the skin, button, much like ones used on beach balls. LOL). He said he likes to wait about 12 weeks. While I'm not thrilled about waiting that long I trust his judgement. We also discussed pumps. I let him know I wanted the Zevex enteralite infinity or just enteralit as they are both more portable than Kangaroo pumps. He said he's pulled some strings before and that I can talk with the case manager and hopefully we can get that. YAY. She will probably only be in the hospital for a little over 24 hours and then will come home. With my nursing experience I feel comfortable with this.

On a happy note, we went to "A day out with Thomas" today for the 2nd year in a row. It was quite cold by the time we got there and we had the last run with Thomas. Lily was cranky most of the time. Caden somehow managed to break part of the stroller :( and while riding Thomas Lily threw her shoe out the window of the train!!! So while the kids enjoyed themselves I was a wreck. Sorta. LOL. Caden had a blast and can't wait to go back next year. We ended up driving down a maze of roads and found the general area she threw it out at and Nick (father in law) jumped out and went searching. Luckily, we all got a good mental picture of the buildings around it considering we were at least 3-4 miles or more from where the Thomas event was held.

We're hoping for a lazy day tomorrow. Depending on how well Emma sleeps we may even make it to church. Here's hoping. Otherwise, it's cleaning, cleaning, relaxing, and more cleaning.

Yay, just colds!

2006-11-07T15:18:00.000-08:00

Well, just got back from the pediatricians. The girls both have "really bad colds". Lily has a small "viral rash" on her forehead. She is more miserable than Emma. Good news, since concentrating Em's formula to 24 cals/oz. she has gained 6 ounces. Yipppee. Her g.i. called while at the peds. The Endoscopy showed no inflamation or eos esophagitis. So that's good. Radiology at Lakeview is not comfortable putting a g-tube in a baby Emma's size so she was referred to a doctor over at bellflower. She has an appointment with him on thursday at 2:30. He'll show us the g-tube, go over it, and have us sign consents. She said surgeries are typically scheduled the following week. So sometime next week it should be placed. So, things are moving right along. Hopefully, this will help her gain weight, sleep better, grow better, be happier, etc. Pray for an easy operation (endoscopically) and quick recovery time.

The girls are sick :(

2006-11-07T10:44:00.000-08:00

Does it ever end? I'm sure you guys are tired of my whining so if you are don't read any further. Anyways, Emma started getting a runny nose about 4 days ago. I though "Oh, no not again!" But sometimes she'll get it for a day or so from her reflux and nothing. Then, Lily got it. Great, now they both have colds, both have fevers, both are pulling at their ears (possible ear infection, Emma just got done with antibiotics a few weeks ago for one), Emma is projectile vomiting (some with bood in her sleep, could be caused by ear infection). Her reflux is made worse by sickness. Poor Lily wants to be held, rocked, and have her hair brushed off her forehead and comforted and that's all I want to do right now, but then Emma starts in with her non stop screaming, and she's sick too. so I find myself uncomfortably rocking myself in a chair not made for a mama and 2 babies, while emma iponches lily and pulls her hair and Lily pushes Emma away and gets an attitude. ::sigh:: I'm about to give Lily a breathing treatment since she's wheezing pretty badly. They both have appointments at 1:45 and then at 2:00. Hopefully it's just a cold, they won't need antibiotics and my visit to the doctor will be a waste of time. :) We'll see though, Emma always likes to throw us for loops. And when lily's sick she normally is pretty happy go lucky so I know she is REALLY sick if she's moping around, cranky, crying, wanting to be held and just looks so darn pitiful. I have a feeling Caden is bringing home stuff from preschool. The girls are sick but he is fine. Nobody we know has been sick and we haven't really been anywhere for anybody to get sick.

Surgery Date for me.

2006-11-06T09:45:00.000-08:00

Well we have my surgery date. 6 days before Christmas!!! Uggh. December 15th will be my pre-op appointment and then December 19th is the big day. It will be at an outpatient facility instead of Lakeview where I wanted it. I'm not too thrilled and actually petrified of this. If it was at Lakeview I would be inpatient and kept at least overnight and given better, more effective drugs. Instead, I'll have the surgery and if all goes well go home within a few hours after surgery with my nose/head packed with gauze and some tylenol with codeine or some other crap that doesn't work. Ughh. Sorry for sounding so pessimistic but I am just NOT happy about this at ALL. The only other date was on the 27th for Lakeview which would have been GREAT but he was already booked. Pray for a cancellation that day so I can fill in that spot. Otherwise, Christmas won't be too fun spent on the couch. The other possible dates were late in January a day before Caden's birthday so that's a no go besides the fact that it seems they don't want me to go that long. So I thought I'd keep everyone updated. I'll try to update as soon as possible after surgery but not sure when that will be. A friend of mine said the recovery is pretty horrendous and that the doctor wasn't lying. So we'll see. Now to work out childcare, my care, etc through Sean, his grandma, sean's dad, possibly my mom, and whoever else volunteers. :)

Emma is doing ok. She is having her formula mixed to 24 calories/oz rather than 20 calories/oz. We have yet to hear from her doctor but I will be calling here shoretly and hopefully she'll be going in for her g0tube relatively soon. sooner rather than later would be great.

Emma's Endoscopy

2006-10-30T23:14:00.000-08:00

We checked into admitting at 9 a.m. Em's last bottle was at 7 a.m. They had a room ready but no crib so we waited around until 10 a.m. and finally got a crib. So we went upstairs to the 4th floor. They got her vitals. Her weight , 13 lbs. 2 oz. So 10 oz loss total in about a week. My husband showed up then. Emma was still a pretty happy. Then we went to the treatment room to put an i.v. in. My husband stayed behind and I went. Emma started screaming as soon as we were in there. Poor girl knows by now what was coming. I told them not to even bother with her hands and to go for the left foot. So they did and sure enough first try got it in. She was upset for quite awhile but Daddy calmed her down and had her asleep on his chest in no time.

The procedure was scheduled for 11 but the doctor was late (she normally is but she's worth it). There was some issues with the peds room being used by another doctor who wasn't scheduled to use it so we headed up to the 6th floor which is an adult floor and not quite equipped for children, let alone infants. My husband and I were able to walk her up to the room. There were 2 adult nurses, 2 peds nurses, 2 G.I. doctors (ours and an adult one) and an anesthesiologist (just in case). My doctor apparently doesn't normally do scopes on children sedated or put under general under 1. I told her Emma would fight so they gave her a half dose of Verced. By the sound of it from the hall it didn't do much. They had me helping get on her nasal canula for oxygen (nurse had to run to the nicu for one small enough for her!). One of the doctors at one point asked if I was in the medical field. I laughed and said, before kids I was! So they kicked us out for the procedure. It lasted about 10 minutes. We came back in held her, calmed her down. They gave us a print out of a picture of the inside of her stomach. Nothing to excited.

Now for the results. She said the lining of the esophagus was more irritated and red than she thought it would be or should be. Emma is on max dose of prevacid, on zantac, carafate and mylanta. Irritation should not be present or very minimal. So we have to wait 42-72 hours on that to see if it is an allergy issue. I'll update again when we know. If it is than she'll switch to neocate. If it's not I'm not sure where we go from there. She DID however agree to Emma needing a g-tube. They wanted to place it today but she doesn't place them and the person who does is on vacation. So she'll be scheduled for one to be placed in a week or so when the person is back. Unfortunately, it will be at Bellflower where she was last at and we're not thrilled with their peds unit. Oh well, supposedly it's only a 48 hour stay or so.

So, we are thankful that we are all on the same page now. Hopefully, she'll start gaining weight, feeling better, sleeping better, and then I can sleep better as well. I just hope we can get this reflux under control because I know she is in so much pain. So for now, I guess it's a matter of "this too shall pass"

from today's events. Most were from before. One was in the elevator on the way to, and a few after. Not necessarily in that order. Pics of Today

She sits!!!

2006-10-26T09:23:00.000-07:00

Well, at 8 1/2 months Emma finally sat "tri-podding" herself this morning for more than just a few seconds. YAY! She is getting so big and was just SO proud of herself. I think she'll be a whole lot happier once she is able to move. Hopefully this will let me post some pictures...

Emma's scope is finally scheduled!

2006-10-25T22:04:00.000-07:00

Well Emma's admission to the hospital has FINALLY been put on the Calendar for monday the 30th. We have to be there at 9 a.m. She has to be NPO (no food) after 7 a.m. and she'll be having the scope done at 11 or 11:30 She said we did not have to take her off meds for this procedure. She also said she will not be going under general anestesia (as she has a past of ongoing apnea and bradycardia). My understanding is it is normally done under General anesthesia. I'm somewhat concerned about her having it not being totally under but also relieved as well.

Anyways, I discussed the possibility of a g-tube (feeding tube) with her and she mentioned that there would still be the risk of aspiration if we did a continuous feed overnight, and that if her reflux is "that bad" and nothing shows from the biopsy, like allergies or anything that she may go ahead and proceed with the nissen fundo/pyloriplasty surgery. Of course she would consult with us first. I'm not quite on board with the fundo but I know i'm tired of my baby being miserable and not being able to sleep for more than an hour or two TOPS at a time at night and getting most of her nutrition at night. I would rather "test drive" so to speak a g-tube and see if that helps some of the problem before jumping to the fundo. Any insight or ideas (if you've been through this or know of anyone) would be greatly appreciated.

A side note on me. I had the 3d catscan done. It was kinda cool. The guy doing it showed me the images and I could see the TOTAL blockage of my frontal sinuses. It was interesting and actually kinda scary. Anyways, that's out of the way so hopefully I'll here from the doctor within a week or so and get my surgery on the schedule. Pray it's not TOO close to the holidays. I'd like to enjoy them without being in pain or hindering anybody elses joy!

Here is a picture from last weekend at the beach. I haven't been posting many pictures lately since blogger has been acting up and not letting me!

Head and Neck Surgeon

2006-10-21T04:08:00.000-07:00

Well, I had my headand neck surgeon appointment today. I went in fully expecting to hear take these super duper pills and come back. umm. Wrong!

I walk in there's a dentist type chair all kinds of probes, metal things, oxygen etc. My blood pressure was higher than it's ever been along with my znxiety level. He walks in gloves up and say I need to look into your sinuses. So he uses this "numbing spray" has me suck up through my nose and swallow. Nothing really felt different. I asked if this was normal. He said yeah sometimes. So he proceeds to pull down this light on his forhead and pull out the big long black scope. My heart was racing. He startes putting it up through mt left nostril first. I sorta grimmaced in pain, part discomfort and part pain. He keeps going until it reached what felt like right between my eyes. And he sorta tried to push buut no go. He pull back, up through the right nostril and a little her this timme and stuck. No go. He then wants to look at my voicebox. Tells me to swallow and breathe. Yep, not happening. Darn gag reflex. He got it though I guess. He pulls it out and snaps his gloves on. Sit on the stool and says "well".

I knew from the tone of his voice it wasn't good. He said "well the mri scan is not good enough for the surgery that need to be done. I'm sending you for a specialize CT scan which will take 3d pictures of the nasal cavities which will help the nuerosurgeon and I best plan out the surgery." So, me being in denial, shock or still uncomfortable (oh the numbinf medicine started working about then, go figure.)He then goes on to tell me that it's a risky surgery and that the complete frontal blockage especially a-symptamic is rare. GREAT. RARE. 2 words you really don't want to hear. He then goes on to tell my my nasal passages are unusually small, and being that the area arounf your nose is typically very thin that there is the added risk of poking through the cavity and into the cranial matter (brain). He said if this happen or looks like it might we will need to cut along your hairline peel back the skin and tissue and go directly through the front of your face.

Ok, so still not hearing that this surgery is going to happy I ask "So, what are the chance that I will need this surgery?" He said oh you DO need, you're going to have which is why I'm explaining everything and letting you know why we're doing the specialized CT scan. I think my jaw hit the floor. My friend from out of state was with me and she looked pale like a ghost. Anyways, They need specialized instruments a nueorosurgeon and the ENT Surgeon for the surgery as well as wanting the specialized CT scan available during surgery to help guide their placment etc. YIKES. So he said it will happen in December. No concrete date yet though. I then went on to ask if the surgery was really necessary if i didn't want it. He explained that it was a "disease of the frontal lobes" and that it was spreading and needing to be done. I was too shocked to asl WHAT disease so I need to call back so I can research it to death.

The good new is if the surgery goes off without a hitch I go home the SAME day. Obviously not if it doesn't. Bad news, is he says recovery can take up to 2-3 weeks and we should have childcare for the children and I should basically stay mild. He said afterwards I should not drive for at least 2 weeks and that my balance my be a bit off during that time. ::sigh::

Will this year ever end? It's one thing after another. I'll write more about it when i know more concreate dates as well as when I have time to process it a bit. Oh and I will try to have him take pictures! Why? Because, I'm weird like that!

Emma's G.I. appointment.

2006-10-10T12:32:00.000-07:00

Well, we saw her g.i this morning. She could tell how tired I was. She said her main issues with doing a fundo are even if they tighten the esophagus she has delayed gastric emptying. So that would cause an array of problems and would't solve thing. So they would have to do the pyloric as well, which of course has it's own set of complications. If we have to go that route we will, but for now we're continued with the wait and see. she is 5 months adjusted age, 8 months real age. So she wants to keep on keeping on. I expressed that really I'm not sure how much longer we can do that and at this point want to procede with testing to rule out different things of course while waiting for the surgery, IF she even needs it. I also told her I wanted to try the hs blocker with the ppi. So she is setting up Emma to be admitted in the hospital. Either thursday morning to friday afternoon, or monday morning to tuesday afternoon depending on schedulng. She will have a scope with the biopsy, as well as as gastric emptying study. That is the plan anyways. So we're going on hospitalization #4. ::sigh:: I just wanted SOMETHING to show up that is an easy fix. I know it won't happen but one can hope right?

MRI Results.

2006-10-06T12:26:00.001-07:00

Well, I Had an MRI for my frequent and long lasting headaches. The nuerologist sent the results to my primary car physician to handle. Apparently, my brain is completely fine but my sinu cavities are completely clogged and apparently pushing up into spaces towards my brai most likely causing the headaches. She made a point to let me know that she's not sure how I'm breathing, let alone not having ANY sinus issues, no couch, no congestion, no pressure, no NOTHING. Also that she has NEVER seen this before. So she wanted to send me to the head and neck surgeon, but per protocol it got sent to the ENT first at which point I'm not sure exactly what they'll do. She did mention some sort of biopsy to make sure it is "just" sinus stuff and not something else especially with how it looked on the MRI. So, I guess this is good and bad and I continue to worry until Oct. 20th when my ENT appointment is.

A small update on Emma. Her G.I. was out of the office the day of Em's appointment so it go pushed off until Oct. 10. We're having major crankiness issues. She is waking up every 1-2 hours, dream feeding, in between screaming and whimpering. I can NOT put her down or the screaming commences. She will smile and coo and talk and be "happy" while being held but will scream like she's dying when she is put down. Part of me wonders how much of thiis is reflux related and how much is just a high maintenance baby. With that said though, there are MANY evenings where even being held doesn't stop the arching of the back or the obvious pain. I feel SO SO bad for her. She on max dose of prevacid solutabs once a day (we gve in the evening when her reflux is the worst for the evening/night). Cerafate 1ml, 4 times a day. This is also max dose it's meant to coat her esophagus, ease the pain and help heal. And in between the cerefate we give 1/2 teaspoon of mylanta. So every 3 hours she is being dosed with something and it seems like it's not helping, at least not as much as it should. She is still puking, sometimes projectile and large amounts. Seems she's constantly oozing and her most recent trick is to Ooze from her nose. Yummy. It's just so so so frustrating. We're ready for surgery, but are treading lightly. We don't really want her to have to go through it but are seeing no other options. Last thing her doctor said was "well, she's gaining weight". Of course she is, she dream feeds ALL night long otherwise she would be LOSING weight. We'll see what she says at this next appointment. But we're tired, frustrated, and not sure when to say enough is enough and press the issue further. At what point do say her quality of life and pain issues are more important than the fact that she is gaining weight etc. It's just rough!

On the Caden front. He had his evaluation with the special education people through the school district. He will have a series of them and meet with their occupational therapist, speech therapist, have his hearing and eyes checked again etc. They are also observing him at his current preschool and will do so a few more times to get a better picture as well as speak with his teachers about his behaviors and any concerning behaviors. This process can take up to 60 days but is sometimes shorter. We'll see what he qualifies for, if anything. They want to place him in the school that is most appropriate for his level of functioning (which is quite high). So we are glad that the process is starting to move along.

Life is like a box of chocolates...

2006-09-22T14:51:00.000-07:00

First I'll give the new on Emma. She had two REALLY great days with the reflux, she didn't really spit up, was happy, slept more, etc. Then...a turn for the worst the last 3 days have been hell. Yesterday it took her an hour to eat a bottle at the mall and about an hour later she spewed it all over me and thr ground. It was a large amount. She was also quite irritable. when we got home she would take 2 ounce here and there, nothing major and was CRANKY. Last night she only woke up twice which is GREAT but when she woke up for the day I could tell she was in pain and I gave her a bottle burped her. she seemed ok. about 5 minutes later she threw up the entire thing. I don't think that amount coming up can even be considered "spit up" She is also on her new meds and while I think sometimes they are helping, I also think they're not seeing as she's still cranky, still spewing, and still not acting "happy". If she's still like this on monday I'll put a call into her g.i. and her ped for a weight check. On a good note she has been discharged from occuptaional therapy because 1) It's hard for me to get there will lily as well and workin around everyone else appointments. 2) She has shown me what I need to do to work with her. 3) She just about on par for her adjusted age. YAY

Onto me. I've had migraine type headaches which are progressively getting worse and lasting longer. They are not touched by anything over the counter and even some prescription things they've tried Midrin, tylenol with codiene, Maxult, and Both a shot of toradal and oral pills have not really touched them. The last one lasted 4 days. I cannot function when I get them and have had to have Sean come home from work. So after this last trial with the maxult and the toradol my doctor felt she should send me to the nuerologist.

So my appointment was today. I was fully expecting her to say they were just migraines and not anything else. After getting my history and complaints she said "Well, sounds like classic migraines" but let me check you out anyways. She made me walk acros the room and back, then do the same thing heel to toe (I had balance issues, not horrible but not great. I don't think I could pass a sobriety test) Made me close my eyes and she touched both feet with this vibrating thing. On the left foot I felt it on the right foot I thought I *might* have felt it but wasn't sure. Turns out I told her that I felt it about 10 seconds after she took it off my foot..Hmm. So I climbed up on the bed thing they have in doctors offices and she had me turn towards her she checked my eyes for dilation with the light. My left eye dilated far more than my right, so she checked again and the same thing. She had me open my mouth and wiggle my tongue back and forth. That was in working order. She di a bunch of pull here, don't leet me push you her, don't let me full you here. My left side has great reflexes. My right side is not up to par with the left and is "concernable".

Diagnosis: Unknown, hopefully just migraines and she would not discuss further. She wanted an MRI ordered because of the localized left frontal headaches and the reflex issues on my right side (The left side of the brain controls the right side of the body), as well of the over dilated left pupil. I asked her what all this could mean and she said that after my MRI that she would either call me for a phone follow-up or call me to come in for my follow-up. In the meantime she prescribed amergen to hopefully help if another headache comes on. It can take up to 6 weeks to get in for the mri, however she said she will put urgent on it and it should be more like a week or two. But I shouldn't hold my breath since radiology is busy. My other option is if it gets that bad again go to the E.R. Tell them I am being seen by a nuerologist, and am waiting on an MRI and they should be able to do it then and there. I personally refuse to believe it's anything else other than migraines, but none the less she was concerned which has me concerned and I will be until I have the mri and get the results. Hopefully.

Prayers and Good Thoughts appreciated.

G.I. Follow Up

2006-09-19T19:44:00.000-07:00

A few things happened today. Today Sean and I started our medifast diets. the foods is pretty good but needs some "seasoning" and I ended up drinking 15 (8 ounce) glasses of water today. That is probably a first. And NO soda even though I am a pepsi addict and diet caffiene free is allowed. Anyways, I will be updating with my weightloss each week.

Emma had her G.I. Follow Up today. She is doing better overall. She is up to 12 lbs. 2 oz!!! She is spitting up less, Cranky less, and hasn't turned blue in over a week. I can't believe we have found something which is working. I am just in awe really. She ended up switching her to prevacid though to help even more and it's a solutab which dissolves quickly on her tongue so we don't have to fight to give her her meds. she also pescribed cerafate to coat her esophagus to help keep her from pain when she does have reflux. She is hoping this helps her start sleeping through the night and her crankiness in the evening when her reflux is at its worse.

Final good news for the day. At 7 months and 1 day old Emma Grace rolled from front to back AT the doctor's office for the VERY first time. She has continued to do this throughout the day. YAY Emma! I took a video and here is a link. It's a few minutes long and her roll is towards the end.

http://www.youtube.com/watch?v=wztW9YGd7ws Video of Emma Rolling

Sifting through Emma's records

2006-09-18T01:26:00.000-07:00

Well, I've managed to get through 3 of the 5 folders of Emma's medical records (one folder from bellflower with nothing really remarkable in it) and the rest from The nicu. Uggh, After reading some of emma's medical reports it seems as though she was bagged with chest compressions (CPR) at LEAST 3 times that we were not aware of.Laymans terms she passed away and they brought her back. That make me so mad, but at the same time i'm wondering how I would have handled it at the time. The notes state that her heart flatlined, I take that as she passed away 3 times and was brought back 3 times. I had NO idea. ::sigh:: I'm still reading more. I have about 3 more HUGE envelopes to go through.It's therapeutic and disheartening at the same time.

On another sad note my Grandfather, Harold is in the hospital right now. He went by ambulance from his heart pounding out of his chest and sky high blood pressure. He has had heart problems since he had a quadruple bypas about 8 years ago. My mom called and let me know, but she didn't know a whole lot. I guess they sent out a test to see if it was a heart attack or what. Hopefully I'll know more tomorrow or within a few days. We're not even sure how stable he is. Prayers and good thoughts would be appreciated.

Medical Records up the wazoo

2006-09-17T09:09:00.000-07:00

Well, I got the medical records from all 3 hospital stays for emma from both hospitals. I ordered them because we needed the ph probe and sleep study results from Bellflower and it was easier for me to get them than her doctor since Orange County and Los Angeles are not connected through the network yet. Anyways, I ended up requesting my record as well to see if there is anything that was "missed" or not told to us regarding WHY she was born too soon. They arrived and there are 6 huge folders (one is not pictured since it camr the next day)

I have gone over my medical records and aside from some rudeness in the notes regarding my "pre-term" labor which the hospital didn't feel I was havng up until the night before she was born. (Good thing I had a competant doctor) there were some interesting findings. Mostly from the operative report and the pathology report from the placenta. It states in the operative report that it appears as though there was a 50% partial abruption however no old blood was seen. (which could ndicate a new abruption and it was found at the top of my uterus). Incidently, this is the same space which showed for amniochorionitis (infection. I have a feeling the two are correlated). There weer also multiple "knots" on the placenta. Places where the tissue was rather hard and also had clusters of cells which were filled with excessive amounts of fluid. Not sure exactly what that means, but my guessing in laymans terms is that I had a less than favorable, unhealthy placenta which most likely began to abrupt and was 50% by delivery. This makes sense to me and in this case it's better she came out. It also makes sense as to why I was told numerous times after delivery that if she had not been delivered that she most likely would have passed away within 24 hours. I'm glad I trusted my body and persevered through the triages less than pleasureable experiences. I will update more with any findings that are "remarkable". Now for some recent pictures.

Up, down, up, down.

2006-09-14T18:56:00.000-07:00

Well I put a call into Emma's G.I. She seemed SUPER irritable since being on the reglan. So she said that she thought that might happen and said we're going on the very last ditch effort. So she wants Emma on 5ml of prilosec twice a day and stay on the good start formula. We see her again on Tuesday. As long as Emma doesn't have any cyanosis (blue spells) we will hold off on the surgery. If she continues to have them then it's my understanding that we're heading to surgery. She also said to prepare for surgery just in case. So, I guess this it is. Sink or swim, hope this upping of the prilosec does its job.
At this point Sean and I just want her not to suffer. She is almost 7 mnths old and it's only getting worse, not better. So if this doesn't work, than we're ready to go for the surgery as well and accept the side effects that come with it. Prayers would be appreciated!
On a happy note here is Emma trying on her Halloween costume. We love fish in this house so she'll be a goldfish. Gotta love her face!

Pray for Sweet Emmie-Rose

2006-09-13T19:42:00.000-07:00

There is a 23 weeker who needs some serious prayers. Her hospital is working against her and her survival is nothing short of a miracle. Please pray for emmie Rose and forward this link on to ANYBODY you think ycould help and pray for this sweet baby.

http://23weeks.blogspot.com/

G.I. Specialist

2006-09-11T15:31:00.000-07:00

Emma had her G.I. Specialist appointment today. Basically, it was on okay visit. She has been diagnosed with severe reflux and DGE (delayed gastric emptying). Her doctor upped her meds again to 5ml twice a day. She's also started on Reglan at the very lowest dose of .7 ml 3 times a day. Her doctor doesn't like prescribing this so she won't be upping it. She also had us start on Goodstart which is predigested formula. She goes back in a week to be re-evaluated. The doctor would like to try everything before surgery and considers Emma's a severe case. If in a week nothing major has changed than her prilosec will be re-upped. After that there's nothing much else to do except surgery. So, that's the long end of the short of it.

As for me I've had severe headaches for months now. They come and go. I've had them more often than not lately and was in urgent care last night for it. I got a shot in my butt of torodol and some pills to take home. I also have to make an appointment with the nuerologist for a CT and a MRI.

That's about it for now. I'll post more when we know more.

We shaved Emma's head!

2006-08-24T16:27:00.000-07:00

Emma's hair has progressively been falling out. It's to th point when we touch her hair it falls out. So, after much thought we shaved it off and she looks cuter than ever! We'll be talking to her doctor about the hair loss though!

Nothing out of the ordinary.

2006-08-16T09:48:00.000-07:00

Emma had the Upper G.I. this morning. The test was quick and looked kinda cool on the screen. Nothing was found structurallu. He said he didn't see any refluxing yada yada yada. It lasted about 15-20 minutes. Her refluxing symptoms normally start somewhere around then. But I was more concerned abut structural issues since we already have 3 ph probes indicating reflux. So I guess at this point we start her on the Prilosec and take her back for a weight check in another week and go from there. This is getting exhausted. I'm tired of playing wait and see. I just wish there was something we could do to make her better right now. Hopefully, the prilosec is the key.

Appointments today.

2006-08-15T16:03:00.000-07:00

The day started off with Emma's occupational therapy appointment. It went well. She doesn't feel like she has an oral aversion at this time, however she is concerned that if Em's reflux doesn't get under control quick that within just a few weeks she will. Emma is up to par with her age in most other things. Although she is a month behind her adjusted age in rolling over and she still keeps her hands fisted which should be gone by now. Or at least not so much. She is scheduled to see her again in 2 weeks to make sure an oral aversion hasn't started.
So, we ended up going to the kid's pediatrician to see Lily for her "well baby" visit and Emma for her eating issues. I guess I'll start with Lily. she has a classic case of Hand, foot, mouth disease. The worst of it is over hopefully. She is lucky though since she hasn't had a fever. She is in the 99th percentile for height at 33 inches and is in the 50th percentile for weight at 24 lbs. even. She is right on trac for development and actually a little ahead in most things. She was due for vaccinations but after discussing my concerns and my peds thoughts on delaying and not doing some of thenm we decided not to give them today and if I choose to continue vaxing in the future I can ask her later about it. The same with Emma and Caden.
This brings us to Emma. Emma has lost a little over a pound and is barely 10 lbs. It was waivering between 9 lbs. 15 oz. and 10 pounds. The doctor and I discussed a strategy and agreed that right now we do NOT want to cause her to have an oral aversion if it's something structurally causing it. She called the g.i. people and told them she wants Emma's test done stat. I have to call and schedule the appointment.l She scheduled her for another weight check in a week and she hopes the test and results will be done by then so we can see where to go from here. She also said that the zantac has had more than enough time to work and at this point the ppi is worth the side effects. So she prescribed prilosec 1.5 ml once a day. Hopefully, this will start helping!
I'll update again either in a week or when she has her gastrointestinal test.
Oh, and we got her an acid reflux pillow which should help keep her propped up. She doesn't like it too well, but we'll just keep working on her!

I didn't know it rains in August!

2006-08-13T19:34:00.000-07:00

Well, when it rains it pours. At least in our house. Emma's feeding issues have worsened. We are charting times she eats when they start/stop, how much she takes and what "symptoms" she has while eating. Like whipping her head back and forth, gagging, sticking her tongue out, crying, etc. We've done this for the last 3 days and we'll be taking it to her ped tomorrow or tuesday. She wants her eating at LEAST 28 ounces and so far she has had 15 1/2 ounces, 17 ounces, 13 1/2 ounces, and so far today 9 ounces with 12 hours to go of the 24 hours. But she is just about sleeping through the night so I'm not real hopeful she'll meet her 28 ounces today either. It's strange because she used to eat 4 ounces no problem, within 15-20 minutes and she would have 8-10 feedings a day. She was a piglet. There has been a definite coorelation which her reflux worsening and feeding problems worsening and I'm not sure the hospital stay helped. There is a possibility she'll be getting a feeding tube, however I am concerned this may worsen the feeding problems, but at least she'll get the calories. It's truly a double edged sword. With that said she has an occupational therapy appointment on tuesday and I'm hoping she can help some or shed some light on the situation.
Lily is schedule for a well baby visit on tuesday however we might not use it. She has sores in her mouth, groin, etc. Somewhat like chicken pox, or hand mouth foot disease. Both are viruses and just need to run their course however we want her seen sooner just in case. She is miserable and cranky. Also, we're considering doing some very delayed vaxing or possibly foregoing certain vaccines so she wont be getting any shots anyways so I see no resason to wait until tuesday. We will probably try to get Em seen during that time instead of Lil. I hope she gets better soon. So far the bumps aren't too bad but I guess in a day or so we should know what it is for sure.
I'll try to keep this updated but life is hectic. If I don't post for awhile don't worry. If something major happens I'll update.

Emma's follow-up

2006-08-09T20:09:00.000-07:00

Emma had her follow-up fwith her normal ped. em is now weighing 11 pounds even. Yay! Anyways, her doctor wants us to get her records from the hospital. She has a few questions on some things that were said/done while in the hospital. Anyways, she upped her zantac AGAIN to .6 ml. Hoping this will help the reflux. We also switched formulas to Enfamil A.R. for "babies who spit up frequently". Thus won't necessarily help the reflux, but it should help with the spitting up FROM the reflux. So far it's working. We're not sure the zantac is working. She been on it for over a month and is getting worse. The pediatric G.I. specilist she wants her to see (the best in the county) is on vacation. In the meantime she put in a referral for an upper g.i. test and when the specialist gets back she'll have a consultation with him/her. Apparently if the g.i. test shows something she'll have surgery. If everything is "normal" which I suspect tahn we might change her med to Reglan as a last resort. If she is staying the same or getting worse than surgery is back on the table. In the meantime check out a site I found for infant gerd that has been a phenominal wealth of information!

Click here to vote for my site at InfantRefluxDisease.com!

EEG and results

2006-08-08T15:29:00.000-07:00

Well, we had a fun filled night with Caden last night. Lily went to Grandma's house so we just had Emma and Caden. We got Caden 2 small new toys to play with and took him swimming and to sit in the spa. We came home and all snuggled up on the couch with popcorn to watch "wild" (Madagascar). Sean headed to bed around 10:30 p.m. and I stayed up with Caden until about 12:30 or 12:45. Sean got up with Em in the night and got up with Caden at 5 a.m. I got up around 7 a.m. We grabbed Mc Donalds on the way to the EEG and Caden thought that was pretty cool.
When we got in the room for the EEG there were a bunch of wires and a hospital bed. Caden immediately started getting a little wild, jumping on the bed and pushing the buttons to make it move up and down. The nurse administering the test was really great with him. He did super while getting all the electrodes on his head. He started whining and asking for them to be taken off about 3/4 through putting them on. When they were done they wrapped his head like a mummy to keep them from coming off. I wish I had a camera. He looked cute. LOL.
The first part of the test they lowered the lights so it was dark and they had a super bright flashing light. They flashed the light quickly, slowly, and with eyes open and closed. After that was done Caden has to blow on a pinwheel for about 3 minutes. We bribed him with stickers for each minute he blew. We were ALL surprised how well he did and how well he listened. Then came the sleep part. I left Sean and caden to cuddle hoping he would fall asleep. I went and scheduled Em's follow-up from the hospital and went to the hospital gift store. When I came back they were unwrapping Caden's head. Apparently, he was NOT going to sleep. He was bouncing around, putting the bed up and down etc. So they called off that portion of the test. He wasn't too thrilled about me washing his hair in their sink.
We left and went to Sean's office for a bit. Caden of course took a nap in the car. We grabbed luch and headed back at 1:00 for his results. The Dr. said that EEG's only show seizures or seizure like behavior about 20% of the time. That means %80 of the time they go undetected by EEG's and the it is controversial whether to diagnose using EEG's. So basically, he said they can be worthless at times and in our instance it was worthless. He does believe he is having seizures or that he is having "seizure like behavior". He's going back in 2 months and they may do another eeg at that time. I don't think I'll allow it since I don't want to put him or us through it again. He has been whining and hyper since he had it done. He does NOT do well with little sleep and I have a feeling the next few days will be a heck of a time getting him back on his schedule. So the short story is we have to watch him and document any seizure type activity we see.
Emma has a follow-up appointment from the hospital tonight with her regular ped. We'll see if she wants any other tests ordered or if Em will be ok for awhile.

She's Home!

2006-08-05T20:38:00.000-07:00

She's home. The ot never came and saw her so we'll be following up with her regular pediatrician. They upped her zantac since her reflux is pretty severe. They will monitor her and how she does on it. If she doesn't seem to be getting better with the meds or constant crying, etc. Than they will do another ph prbe and if nothing has changed than surgery will probably be the next step. She's still on antibiotics for her ear infections. They didn't send her home on an apnea monitor however her regular ped may order one for her. She LOOKS and ACTS a 100% better.

For the reflux she has to stay upright for an hour after she eats, sleep elevated. (they recommended a tucker sling. You can google it. Pretty pricey so i'm trying to figure out a way to make my own :)) Also being on her tummy is supposed to help with the reflux as well. So hopefully now that her ear infection is under control and we have the reflux more under control we'll be able to know what to watch for more and hopefully she'll be fine from here on out. They said the first year is the hardest with reflux.

Also, please pray for another mom and baby in the nicu. Her son is 12 months. He had severe reflux and had surgery for it when he was about 6-7 motnhs old. Well he came back in for vomiting. Turns out the surgery loosened. They had to redo the WHOLE surgery. Poor bubs is on morphine and in alot of pain and mom is a mess and barely hanging in there. Pray he heals quickly and that they can go home. Also, mom hasn't left the hospital even to shower in the last 3 days, hopefully she can get some rest too!

Passing the time.

2006-08-04T13:34:00.000-07:00

Here's the reader's digest version of what is going on. Em is still in the hospital and mostly likely will be staying another night or so. She has a 24 sleep study and ph probe test. She had wires everywhere and a tube going down her nose. She was miserable (I don't blame her). The ph probe test confirmed that she does have severe reflux. She is back on meds for that.

The sleep study report has not come back yet. There are concerns about her breathing. Not necessarilly full blown apnea, but definitely inconsistencies in her breathing pattern.

Also, she is still have feeding issues, gagging, turning her head, arching her back etc. Some of this could be caused by the reflux but an occupational therapist is coming to work with her and might order more tests. There are concerns that there is something wrong with her epiglottis (read about what it is and does here :http://www.innerbody.com/text/dige02.html) If there is a problem with it she'll most likely have surgery. Her infection spread from one ear to the other but she is an antibiotics for that and just generally acts and looks better. So that's where we are at now.

Another night...

2006-08-03T18:06:00.000-07:00

The sleep study and ph probe tests went well so to speak. She didn't pull out any of her wires and they think they got the data they need. The results won't be back until sometime tomorrow. I ended up staying at the hospital last night (didn't get much sleep there! She had 1 color change during the night and is having major problems feeding. Not sure if it was from the tube down her throat or not. she's gagging, her oxygen levels are dropping etc. Hopefully, it will self resolve now that the tube is out. The nurse said she's ALOT happier now that those tests are over as well.

We're hoping they find SOME explanation for all of this and that she can come home tomorrow. I'm debating spending another nmight at the hospital or not. We have nobody to watch Lily so that might make my decision for me, unless I drive home at like 5 in the morning.

Sean and I are still hanging in here. We're both just really tired. One thing after another.

Caden's sleep deprived EEG is on the 8th. So we're somewhat prepping for that. Or I am at least. On a good note Caden has had quite a few good days at school lately. We got him a t-ball set and taught him how to hit balls yesterday. It was ALOT of fun!

Crap!

2006-08-02T21:08:00.000-07:00

Em's doing ok. Sorta. They still don't know what is wrong but they have some theories. Her o2 levels are on the low side so she is on a low amount of oxygen. She also did the whole projectile vomiting thing again. Her spinal tap came back clear and she is on antibiotics. She DOES have an ear infection but something else is going on.

She is weighed down with tubes and wires. She is having a ph probe done to check for reflux, or rather how bad her reflux is. She is also having a sleep study done to check for sleep apnea and possible seizures. She is not too happy, screaming and trying to rip out the tubes in her nose. I was the only one able to calm her down so I'll be heading back to the hospital in a few. She might come home tomorrow if all is well, but she'll be coming home on monitors.

Sean and I are very tired and very worn out!

It never ends.

2006-08-01T21:24:00.000-07:00

Just when we thought it was smooth sailing from here on out Emma caught a cold, or something. She was up all night screaming on sunday night. Monday morning she started projectile vomiting by noon she had a 103 fever. I fed her again and she coughed, puked and turned bluish grey. She did this again a few minutes later. We took her to urgent care last night. The Dr. tried to play it off like it;s just a cold and send us home. She didn't even look at Em's history or anything. I basically threw a fit so she called the doctor on duty at the hospital who said she wanted Em admitted and monitored but that they had no beds. So she saaid take...(another Kaiser hospital somewhat in the area about 45 minutes away). So we take her home fever goes between 99-104 depending on how long she's had tylenol in her. She had an episode early in the morning and another around 9. I called the Dr. who she had a follow up appt. with scheduled today. She said I could come in earlier however I couldn't because I had Lily.

I went to her appt. (my mom watched Lil) She was just about livid about the Dr. on call last night. She said she'll be writing a report. Anyways, she ran a blood culture, did a urinary analysis through a catheter, and a chest x-ray. All came back pretty much clean. So she called the doctor on duty at the hospital. Still no beds. Instead they transferred her to another hospital by ambulance. The new doctor is really nice and said he's a bit "over protective" but wants to get to the bottom of this.

Emma will be having a spinal tap tonight to rule out a brain infection (they don't always show up in the blood). Also there is something with a muscle at the bottom of the stomach which can become enlarged and close it off which results in projectile vomiting, fever, and decreased stools. All of which she has. He doesn't think this is it as it's pretty rare but if it is she'll have surgery. All of this is speculation at this point. So for now she'll be monitored. If no spells and the spinal tap comes back ok she might come home tomorrow. Although, they also want to do a stomach ultrasound. And she might be having another ph probe done for reflux to see if that's causing all of this. So for now she's in the hospital. She graduated to the big girl peds unit. No more nicu. Of course mommy had daddy bring the camera so I could get pictures just like everything else she has gone through.

Mommy and Daddy are doing alright. Both tired and trying to work out childcare for Lily so Dad can see Em in the morning and go to work later in the day and so I can be with Emma tomorrow. Continued prayers for Emma and also for the Doctor's who are taking care of her that they can find out what is causing all of this.

Not much going on.

2006-07-21T15:34:00.000-07:00

There's not alot going on. I'm starting to feel more and more like we might really be "done" having kids. I am slowly sellng old baby clothes that Emma is growing out of and that Caden has outgrown. I sold the mini-cosleeper today and something about that just made everything seem so final. I have a bit of a bittersweet feeling about all of it. I guess if there are more kids in the future it will happen.

The kids are doing well. Caden is still loving school. The girls are home with me during the day. Lily likes to help "clean" er make messes behind me while cleaning. She LOVES being read to and has a new book whee you lift flaps up to see things and she just lights up when we read it to her. I find myself reading it about 20 times a day and at times wanting to hide the darn thing. LOL. But she likes it and reading is good for her so I endure it.

Emma is doiong well. She doesn't have any doctors visit for this month until the end of august. She'll have her 6 month checkup then. I can't believe how old she's getting so fast! She weighs 10 1/2 lbs according to our very scientific and accurate method of Sean weighing himself on a bathroom scale and them re-weighing himself holding her. LOL. Seem about right. She has outgrown most her preemie clothes and is now in 0-3. She still cries alot, but I'm learning to deal with it a bit better. She's also starting to sleep through the night more nights than not so that is great too. Not much else to report on.

My doula work is going well. I'm starting to get myself out there to try and get more clients. I really enjoy and think it's perfect for me. Just need to keep balanced between work and family.

Going in a new direction...

2006-07-13T09:21:00.000-07:00

Ok, it seems as though Emma is "out of the woods" so to speak and we're moving onto the next chapter of our lives. I will still be including updates on her and the other 2 kids but this blog will be going into more of a "A day in the life of a circus..err I mean family with toddlers." type of deal.

For those who have asked. The big bows that you see one the girl's pictures were either made by me or bought on Ebay depending on how creative I felt that day. :)

Oh, and a few pictures!

2006-07-12T11:35:00.000-07:00

Since I forgot to add pictures here are a few!

Good news from the eye doctor!

2006-07-12T11:27:00.000-07:00

Emma had her eyes checked this morning (It has been a month since the surgery and last check). He said her ROP has regressed 100% and looks really good. We are still unsure as to how much loss of sight she will have or when and if she will need glasses. But, this is GREAT news. The best part is we don't go back to see him for another 3 months!!!

I'm not sure how much she weighs now but she's getting big. Smiling lots. Still crying lots. She's definitely more aware and has more awake period now. She's only waking about once at night normally around 2:30-3:30. Sean and I still take turns getting up with her in the night. She was put on zantac for reflux and it seems to be helping quite a bit although it tastes nasty and she hates the stuff. She is still eating between 3-4 ounces a feeding about every 3-4 hours.

Caden had his evaluation with the autism team and they diagnosed him as high functioning on the autism spectrum. We are working with the school district to get him into an early intervention special education program in the fall. In the meantime he saw the nuerologist and is scheduled for a "sleep deprived EEG" for concerns that he may be having absence seizures. We're also working on getting a second opinion on the autism diagnosis. He is enjoying his currwnt preschool. There are some behavior issues but overall I think it's great for him!

She smiles!

2006-06-28T16:15:00.000-07:00

Real life has taken over and the posts are few and far between. Life is hectic. Emma is doing well. she has one more blood draw and then we're done with those for awhile. At her last Doctor appointment (her 4 months well baby and post-op rolled into one)she weighed 8 lbs 7 oz. She HAS to be nearing 9 lbs now. She is slowly growing out of her preemie clothes and into 0-3 months. I went to pull out Lily's old clothes and found that I had either sold them or given them all away! Granted, most of them were borrowed from a good friend so I'll have to hit her up again (You know who you are).

Emma is quite the character. Like all kids she wants attention. TONS of attention. I think we may just have another drama queen in training. She is not content to sit and take in the worl. She wants to be held, talked to, walked around and in her face. Now this isn't really a problem so much as it is inconvenient at times. Like when I'm trying to clean. Just don't ask to stop by.

Most nights she only wakes up once a night and goes right back to sleep. Those nights are GREAT. She eats about 3-4 ounces every 3-4 hours. I fully weaned her (due to medical reasons). She seems to do okay on the formula but she was prescribed zantaz for reflux. She spits up ALOT.

The biggest news is Emma has begun to smile. I'm not talking little grimace gas smiles. I'm talking open mouthed, toothless, grins from ear to ear. Gotta love it. They are few and far between but they just make me melt when she does it. Oh, and she has now fallen victim to mommy's bow fetish (I'm sorry sweetie, but they're cute!)

Long overdue update

2006-06-19T09:13:00.000-07:00

Sorry for the long overdue update but here it is. Emma came home last tuesday. The nurses were MORE than ready for her to come home. She cries unless she's being held which makes for quite the unusual arrangement in a NICU setting. She played musical nurses while there. LOL. She had an eye appointment last wednesday and the news was awesome! It seems as though the surgery worked really well. We don't have to go back for a month! YAY. She lost a few ounces in the nicu but has since gained it back. She's back to her normal self. :)

I did my doula thing last thursday. The mom did AMAZING, and it was a qujick labor. It was really fun and I'm looking forward to the next birth.

Father's day was nice. Saturday night we went out with Sean's dad to Tulsa Rib Company. Yumm (the leftover on sunday were good too). Sunday was a lazy day. We got up. Hung out. I folded about 6 loads of laundry. Sean and I both got naps. After Caden came home (He was with his bio father) we took the kids to Disneyland. Got some ice cream. Yummy. Caden went on Star Tours with Sean for the first time. Sean has been waiting for that for a LONG time. So, that was fun. We came home had in-n-out and hit the hay.

:)

More tests.

2006-06-11T22:47:00.000-07:00

Emma's still in the NICU. Her last spell was about 4:30 today. She had a few tests today and is having the ph probe done tomorrow. Hopefully she'll start doing better soon so she can come home. Not much going on.

We took the kids to Disneyland today. They had a blast. Lily was able to go on the cars for the first time today. It was an all around nice day.

Still having spells.

2006-06-11T08:39:00.000-07:00

Emma won't be coming home today either. She had 5 spells yesterday and apparently has already had a few this morning. They are going to do an x-ray just to make sure everything is clear. Also they're going to do a head sonogram to clear her of any brain bleeding. If all that comes out normal and she is still having spells of the decreased heartrate and desaturations of her oxygen level then they will order a ph probe to trest the acid level in her stomach to see if she is having reflux issues causing the spells. The probe goes down her throat and into her stomach and is done for 24 hours. Last time she had it done she was about 3 lbs and managed to pull it out, so aside from a straight jacket I'm not really sure how they'll be able to do it. Lets just hope she behaves herself so she can come home sooner. If she is having reflux issues than they will start her on meds. I'm about to leave to go feed her. Poor baby.

A Little Update

2006-06-10T12:19:00.000-07:00

Emma won't be coming home today. Unfortunately, she had a few pretty bad spells last night. The one at 3 a.m. required oxygen. She has to go 24 hours without a spell to come home again. So for now, we play the waiting game.

Surgery today

2006-06-09T20:35:00.000-07:00

12:25 p.m.- So far we’ve been doing a lot of hurrying up and waiting. Emma has not eaten since 7 a.m. and is not real pleased about it. Sean has finally gotten her asleep for now. She was admitted at 10 a.m. They sent us upstairs to the pro-op area. However, the NICU was waiting for her and shortly after getting upstairs we were sent back downstairs. She was weighed and is now weighing 7 lbs. 7 oz. She had an I.V. put in. It took awhile to get a correct blood pressure reading since she was screaming and screaming.

Sean and I are hanging in here. Barely. It’s rough to be back here. We never thought we’d have to come back here and are flooded with memories. The smell of the NICU is making me neasous. I don’t want to be here but I don’t want to leave Emma either. Hopefully, the surgery will be sooner rather than later. She was “added in” so she will have it whenever they can fit her in today. It can be right at 1:30 or as late as 7 p.m. We’re hoping that she comes out of surgery well and doesn’t have any breathing issues afterwards.

The best outcome for the surgery is that it will stop the progression of the ROP and we can work on ‘fixing” the damage at a later point in time.

2:00 p.m.- Still waiting for the OR to open up. Emma’s I.V. was occluded so it had to be restarted. She is starting to settle down and sleep a bit. We’ll start the drops to dilate her eyes when the OR calls.

3:30 p.m.- The OR called. The drops were put in and her eyes are dilated. We’ve talked to both her optometrist and her anesthesiologist and signed the consent forms. It’s real. This is happening. I’m starting to get really antsy and just want it over with. We called our pastor to meet us here to pray over Emma before she heads into surgery.

4:15 p.m.- They prepped her for surgery and put her on the warming table. She looked so innocent and tiny! Our pastor managed to make it just in the nick of time to pray with us. We then walked her to the OR and let them wheel her in. We both managed to choke back our tears and try not to think about it and instead joked with the pastor.

We’re expecting the surgery to take about an hour but with time to put her under and bring her back they’re expecting about 2 hours. Sean just left to go get Lily from the babysitter. He’s going to take her home and call around to see who can come stay with Lily so he can come back and be here for when Emma gets out of surgery.

6:30 p.m.- Dr. Mehta just came out and let me know the surgery went well. The tried to extubate her but she was holding her breath so they reintubated her. He said she was doing very well though. She was back in the NICU being stabilized. Before we were able to go see her she ended up pretty much pulling out her ventilator and did just fine. I guess she just needed to wake up from being put under a little bit more. She is weak but doing well. I will probably be heading back at 9 for a feeding and then coming home to get some rest. We are exhausted!

Here are some pictures from today’s events.

Waiting for Surgery

Pre-Op

Post-Op

Going for Surgery

2006-06-07T22:28:00.000-07:00

Unfortunately, today's optometry appointment didn't go so hot. IT seems as though emma's ROP has progressed to threashold disease (Stage 3 ROP). She is scheduled for surgery on friday. We go in at 10 a.m. for her to be admitted back into the NICU. She cannot nurse after 6 a.m. The surgery will be sometime after 1:30 p.m. and may be as late as 7 p.m. UGGH. She will NOT ne happy. She will be put under and intubated. There is a chance that she may have trouble coming out of the anestesia or have issues with apnea once again. She most likely will come home on saturday unless of course she is not stable. If she's not stable then she'll stay until she is. The surgery will not fix what damage is already done it will simply keep it from progressing any further. If this works than she'll need glasses. If it doesn't work she can go blind.

No Change

2006-06-01T08:05:00.000-07:00

Well, Emma has no change in her eyes. We go back again in a week to check again. Apparently there was a bit of concern on whether the right eye was starting to get worse or not, but he said it was a fine line so for now he'll call it no change. Emma is turning into quite the pistol lately. She cries. Alot. I think she is now turning into my hardest of all 3 kids. She starts crying and just won't stop. She likes to use me as a pacifier (which my other kids did too). In the evenings she cries and cries. We're thinking she might have colic. And yes, we've ruled out numerous other things. Other than that she's doing great though. She saw the occupational therapist last week and she said she's right on track and even ahead in some things. That's good news. She's getting bigger by the day and really starting to "feel" heavy. She's also definitely filling out and looking more and more like Caden did as a baby.

Long Time, No post.

2006-05-25T18:20:00.000-07:00

I know, I know. I've been bad about posting. Life has been hectic. I attended a Doula (Paid Labor assistant) workshop down in San Diego last weekend. It was 3 long, tiring, intensive days. It was interesting. I am going toward my doula certification so thi was one step closer. Emma went with me while the kids stayed home with Dad. She enjoyed every minute of all the girls wanting to her.

Speaking of Emma, She is up to 6 lbs. 1 oz! Just a tad smaller than caden was at birht (6lbs. 12 oz.). He rlabs FINALLY came back normal at 8.2. She is also working hard to make red blood cells and her labs showed that as well. No more visits to the pediatrician until her 4 month visit where she will get her 4 month vaccines.

Emma saw the eye doctor again. Still stage 2 ROP. Still praying it doesn't progress. She has another check next wednesday. Hopefully, it will be regressing. We shall see.

Other than that not a whole lot going on with her. She is acting more like a normal newborn. She likes to be awake at night. Wants to be held constantly. Wants to eat right when my hot plate of food is set down in front of me. :)

As for the other two. They're doing ok. Caden has gotten a referral to the autism clinic to evaluate him for autism. We're thinking he may be high functioning/aspergers. If not he's just brilliant, but there are some little "cadenisms" that are just a bit "off". So we'll see what happens with that.

I will try and update more regularly but with the doula gig and being a "full time" mom again with no nanny it may be a bit less often than before.

Just hanging out!

2006-05-17T21:26:00.000-07:00

Disclaimer: No baby was harmed in the making of this photograph. Do not try this at home it may result in too much cuteness for one household.

Just when I thought we were in the clear...

2006-05-17T17:55:00.000-07:00

Emma had another eye exam. The last eye exam showed that her Stage 1 ROP (retinopathy of prematurity) was slowly starting to regress. Well, today showed a completely different story. Emma has progressed completely to stage 2 almost 3. She will be checked again in a week. If she progresses to stage 3 then she will have laser surgery done. Hopefully this will keeop it from progressing any further. Stage 3 is where blindness and SEVERE vision problems happen. If for some reason lasering doesn't stop it ands it ontinues to progress than she will have full on surgery. The laser procedure has some risks including drop in heartrate, blood pressure, and opxygen saturation. Apparently it is not too uncommon to jave breathing issues during and/or after the procedure in infants as small as she is and there is a chance she will need to be put back on a ventilator or oxygen for some time afterwards. We're just praying at this point that none of that has to happen. Aside from her eyes she has another wieght check and blood culture tomorrow. Hopefully her levels haven't dropped any and she's gaining weight. We'll see. On a good note, her original due date is TOMORROW! She was born exactly 3 months early so she will be 3 months old tomorrow! My how the time has flown by!!!

E X H A U S T E D

2006-05-10T02:17:00.000-07:00

It's 2:15 a.m. I've been up since 1 a.m. I woke up to Emma's angelcare monitoring alarming. I checked on her and she appeared fine and the alarm only sounded a second. I went back to sleep. About 3 minutes later it sounded again. This time it alarmed for longer. I checked her again and she was doing rapid breathing movements which is indicative that she may have had a spell and was self resolving and breathing rapidly to make up for it. I turned on the lights changed her diaper, fed her. After about 2 ounces (she's up to about 3 ounces a feeding) I went to burp her and she puked ALL over me. UGGHH. She also pooped again. So I changed her and resumed feeding her. She ate another ounce and is now back in her bed. I'm awake but exhausted. Afraid to sleep in case she stops breathing. I can't/won't wake Sean since he's sick and praying that Emma isn't getting sick and hoping that the events of the night are all just pure coincidences. So, I'm up pumping and about to try and get some rest. We'll see how that goes!

Calgon take me away

2006-05-09T21:31:00.000-07:00

It's been one of those where I wonder how and why I do it. Caden has been "resistant" all dsay long. I could say the sky was blue and he would argue its not. Nothing I say is right and "no" seems to be the only word he understands. To top it off Sean and Lily are both sick. I am exhausted and praying Emma doesn't get sick. After a long day we were just about to put the kids in bed. Had them in their jammies and we walk into the kids room and Caden had found some orange paint (not sure where he got it from) and it was ALL over the carpet in their walk in closet. It didn't come out well, but i'm too tired to scrub harder. We threw him in the tub and went to cleaning. While we were cleaning Lily decided she needed a bath too and we found her fully dressed in the tub with Caden splashing away. it was too much not to laugh. So it's been one of those days, and I'm ready for bed...

Doctor visit update.

2006-05-08T13:51:00.000-07:00

Not good news, not exceptionally bad either. Her labs came back., She dropped from 8.2 down to 7.8. Her body is showing signs of trying to make more blood cells though so at this time they won't transfuse. If her color starts to turn pale, or her heart starts beating faster to make up for it, showing signs of distress than they will.

She is up to 4 lbs 11 oz. Still not gaining as fast as they would like. They want me to supplement 2 feedings a day with neosure 22 calorie formula. I am not thrilled about this but I'll do what I have to do. Guess daddy can take on another night feeding! LOL. They are trying to find a way to get me some human milk fortifier to add those extra 2 calories per ounce. We'll see what they can do. She goes back for labs and another doctor visit on friday. Hopefully, there will be better news.

Emma's 1st professional pictures

2006-05-08T13:46:00.000-07:00

Re-Birthing

2006-05-07T22:46:00.000-07:00

Yep, you read it right. Tonight, Emma went through the process of re-birthing. Essentially, you get in a tub of warm water with the baby,you set the baby in your lap or tummy stroke the baby gently, talk to the baby in a soothing voice and let the baby slowly make its way to the breast. This creates an atmosphere close to a water birth. It is supposed to "erase" any trauma from birth or effects from trauma at birth and also help breastfeeding issues.

So Emma and I hopped in the tub. She got SO comfortable she was fallinng asleep. I brought her to my breast and she rooted until she latched on, without a shield!!! She nursed beautifully in the tub, skin to skin for a good 20 minutes. I was so amazed. I was skeptical of the whole process but it seems to have worked. She has NEVER nursed that well without a shield on my LEFT side (she hates my left side and has only latched on once before without a shield). We got out after nursing, dressed her and she is sleeping soundly.

After church today we went to train days in Fullerton. They had an amtrack train, the original disneyland train and tons of model trains there. We spent about 4 hours there. Caden LOVED the model trains. I think it might be something fun for him and daddy to get into together. Unfortunately, I forgot the camera. :(

Tomorrow Emma has a recheck on her bloodwork and her weight. Hopefully all is well. She has been eating at least 3 ounces a feeding so she should be good to go. Her color looks great and she is peeing fine. So all looks good. Let's hope the lab results show the same.

For all the Emma Fans

2006-05-05T21:40:00.000-07:00

I thought I would update sooner rather than later. Emma continues to do well. She successfully nursed without the nipple shield today on both sides. I will just continue to attempt it with each feeding and eventually we'll get there.

Caden and Lily can't get enough of the baby. They give her lots of love and kisses. We've even caught Lily wandering around the house while Emma is sleeping looking for her and saying "baaaahhh" Which is what she calls the baby.

Nights are going...alright. We're left tired in the morning though. Emma likes to eat and then not go back to sleep at her 1 a.m. feeding. We're thinking she is still used to the NICU schedule. They used to do her bath and weight and then feed at 1 a.m. So she is used to being up a bit longer. Mommy and Daddy are not. Last night Emma ended up sleeping on Daddy's chest since daddy needed rest.

All in all things ontinue to go well. She has her bloodwork again on monday to check her anemia. Hopefully she has gained some wieght and her levels are going up and not down.

Just a quick "we're alive" update.

2006-05-05T02:50:00.000-07:00

Life is hectic. The days have been filled with eye appointments, dr. appointments and blood tests for anemia b/c she did eat for 8 hours straight, home health visits, rescheduleing occupational therapy visits. I swear every day theres a new appointment to go to or reschedule b/c of a different appointment. I'm worn out. LOL.

Emma's eyes are doing well the Stage 1 ROP is beginning to regress. She has another appointment to check its regression in 2 weeks. It appears that her eyes will be JUST fine. YAY!

On wednesday, Emma hadn't eaten for a few feedings and was rather lethargic. After her eye appointmen we ended up taking her to the ped. They ran some blood tests. She is still anemic and her hematocrit went down very slightly, but "nothing to get worked up about" yet. After her blood draw she decided to eat REALLY well for about 30 minutes. Guess she's just like any other kid. She shaped right up once we saw the doctor.

Today was her home health visit (also my very first day alone with the kids, no hubby, no nanny.) She is up to 4 lbs. 9 oz. She is doing well. Looks great. Nothing really to report. No news is good news in this case.

The kids are adoring her. They give her LOTS of kisses. Lily says "BAAA" for baby. It's really cute. She has aquired the nickname "Chimi" for chimichanga since she's always swaddled like a burrito since she can't quite regulate her temperature well enough not to be. The kids (yes, all 3 of them) took a bath together night before last. Maybe I'm crazy, but they seemed to enjoy it. Emma likes her "safer bather" bath pillow thing and fell asleep while the older ones splashed. Bathtime ended though when Lily got soap in her eyes and Caden dumped a cup of water all over mama. LOL.

Here are a few more pics of the past week home. The updates will be further spread out now that she is home. I will update at least once a week though. Enjoy.

Emma's first bath at home

2006-04-28T20:27:00.000-07:00

I'm lovin' it!

2006-04-28T17:39:00.000-07:00

I am totally loving having all 3 of my babies home with me. Caden loves his new baby sister and has announced that we should have another sister for him. We kindly explained that any baby brothers or sisters will not be coming for quite some time and another baby or sister might not happen ever. His response, "Ok."

We have figured out that Lily is not so much jealous over the baby. She just WANTS the baby. She wants to be right where the baby is no matter WHO is holding the baby, or what. She wants to hold the baby (until she cries, then she gets upset and cries). She is constantly giving hugs, trying to pick up (don't worry we're right there with her watching her like a hawk), giving kisses and all around just loving on the baby. We're trying to teach her to be gentle with her "petting".

Emma is fitting in nicely in our home. The nights are tiring, but she sleeps except for her feedings (promptly every 3 hours). She sleeps most of the day as well. She is awake currently "playing" with the kids and the train tracks. We wrpped her up and put her in one of the kid's toy bins. She fits perfectly and is confined. She can smoewhat sit propped up in it and seems to be content. (Picture will follow tonight when I have more time). Other than that there is not much going on. She has a bunch of doctor appointment next week. An eye apppointment, pediatrician, occupational therapist, etc. Until monday we plan on just hanging out at home and enjoying our family.

She's home!!!

2006-04-26T17:40:00.000-07:00

After 9 weeks, 4 days, 1 hour, and 34 minutes we brought Emma home. I can't believe she is FINALLY home. She looks great. Lily is pretty jealous and cranky so we're hopoing in a few days she'll get used to having another baby around. I'm sure we'll all be tired for awhile, but the wait was definitely worth it. No more night drives to the nicu. No more wires. No more alarms. YAY! Here are some of the highlights of her coming home.

Still Waiting...

2006-04-26T11:54:00.000-07:00

Of course out of all days for Emma's doctor to be in a meeting until noon it HAD to be today. LOL. So we'll be heading back to the nicu 1:00 p.m. pacific time. It's is 99.9 percent this time that she will come home. She had her pictures taken this morning. I will try and scan that this afternoon. For now we play the waiting game. It was funny. Leaving the nicu earlier this morning was bittersweet. I looked at Sean and said this is the last time we are leaving here without our baby. It is all too surreal. I haven't shed tears yet, but I know they're coming. Once again thank you for all of your loving support, kind words, good thoughts, and prayers through all of us. They were much needed and much appreciated. We couldn't have done it alone. For that I will be forever grateful.

Need your prayers!

2006-04-25T14:23:00.000-07:00

There is a HUGE chance of Emma coming home tomorrow morning. I spoke with her doctor regarding her spells and it seems the only time she has spells is during nipple feeds with a bottle. Her last true apneac spell was 3 days ago. Since then they have been due to bottle feeds. She is nursing well enough to nurse exclusively at home. Yesterday she said she would re-evaluate on wednesday and we would go from there. So far so good. Pray that Emma makes it through the night with no spells and that her doctor feels confident enough in emma's health to let her come home. We filled out the form for Emma's hospital pictures (they normally take the the day of discharge or day before) today. She will be having her hospital pictures taken in the morning. They also told us to be ready with the carseat installed "just in case". It's getting harder and harder not to get my hopes up! Praying for the best!

More Pictures

2006-04-23T23:04:00.000-07:00

About time for new pictures!

2006-04-21T21:39:00.000-07:00

Emma nursed really well tonight. I ended up bringing a cloth diaper with me to make sure they weren't so big that they wouldn't work. They're big, but workable. YAY. I can't wait until she gets to wear them all the time. Anyways, here aree some pics from tonight. She weighs 4 lbs. 1 oz.

So close!

2006-04-21T16:36:00.000-07:00

Emma is so close to coming home. She is taking all of her feeds by either breast or bottle. This also means she is more tired than she has been and also burning more calories. she just need to get used to all the extra work. She nurses really well. She has taken to nursing with a nipple shield well and actually is now using it on both breasts. We will begin to wean her off of it once she is home. At this point we are willing to do just about anything to get her home! Now the wait begins. Everyday comes new hopes. We're just waiting for her to go 48 hours with no spells. She seems to go a day without any spells, and then the next day will have one or 2. She is SO close to coming home. I can feel it. I have no doubt she'll be home by next weekend. Ok, well maybe a TINY bit of doubt. I just hope it's sooner rather than later. She had one spells yesterday, and as far as I know has not had any today. Pray for her that she comes home this week.

Emma hit 4 lbs. a few days ago. I could hardly believe it. When she comes home I will post one of her first pictures and her coming home picture for reference sake.

I installed Emma's carseat yesterday so we'll be ready when we get the call (getting all teary eyed and choked up writing this). Sean is bulding her crib this weekend. I am going to set up her cosleeper next to our bed today along with the angelcare (sleep apnea) monitor tonight. (It alarms if there are no breathing movements for more than 20 seconds. The $100 bucks was worht our peace of minds. We're pretty much unpacked but plan on doing all the last minute things, and last things to settle ourselves this weekend. It is finally seeming so real. I know it will be rough when she gets home though. Lily is already super jealous and is still a baby herself so we'll see how that goes. Caden can't wait for his sister to come home. I think he'll be a big help by fetching diapers and whatnot.

We're all so excited. I'm sorry I haven't posted new pictures lately. The camera is always in the car, but I am constantly forgetting to bring it in with me. I will try to get some new ones up this weekend.