Baby Dinos Heartbeat

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!

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

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

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.

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.

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

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

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

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.

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Back to square one

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

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.

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!

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

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. :)

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

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.

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

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

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!