Em has a Mic-Key

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

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.

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!

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

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

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..

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.

We're Home!

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

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.

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!

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

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!!!

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!

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 :(

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.

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

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!!!

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!

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

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.

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.

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...

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

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

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

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.

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

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

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!

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.

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.

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!

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

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

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!

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.

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...

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!

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.

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.

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...

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!

Since I forgot to add pictures here are a few!

Good news from the eye doctor!

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!

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

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.

:)