She's been through so much...

I have watched my daughter go through so much. As a mother I hurt for her, I cry with her and I wish so badly that I could trade places with her. The list is long and growing of procedures and things that she has gone through.
She was born at 25wks 1lb 6oz and dropped down to 1lb 2oz
At birth her body was badly deformed
Her right lung collapsed and she had a chest tube put in
She had little to no fluid in the womb and has pulmonary hypertension along with other lung issues.
She was on life support- a jet ventilator for several months which caused a deep groove in the top of her mouth causing eating difficulties.
She had several blood transfusions
She was on the cpap breathing device for several weeks 
She was on oxygen and heart monitors until Dec 2011
She had surgery twice for gtube placements because she can't eat by mouth
She had her feet and legs casted due to vertical talus in both feet 
She has been through rounds of rsv shots and many xrays and ct scans
She has struggled developmentally both with learning and motor skills
I watched her struggle with tummy time, crawling and sitting
She was diagnosed with acid reflux and frequently projectile vomits full feedings
She had ROP in both eyes and had to go through several exams for that
She had jaundice after she was born and spent weeks under lamps
There were many sick days and several close calls
Many doctors said she'd never make it, many nicu nurses thought she wouldn't also
She has multiple joint contractures causing her joints to be too tight her left leg is severe and we aren't sure what they will decide to do with it in the future.
And now her hip surgery that didn't go well. The surgeon was supposed to be able to make a small incision in the inner thigh and go in and put the hip bone in the socket, close her up and cast her. If things would have gone that way she would be able to move around on the floor, do tummy time and sleep laying down. But when they got to the hip area things were too tight, they had to cut many tendons and ligaments more than what they wanted to. Then the area was still too tight so they say she runs about a 50/50 chance of the hip popping back out and if that happens it will be a much more extensive/painful surgery to fix it. So since the surgery went the way it did she has to be in the sitting position at all times even while sleeping for the next 3-6 weeks. There is no playing on the floor, no tummy time, no sleeping on her back. She is very aware of what is going on and is starting to get depressed. I look at my sweet baby and I don't see smile, laughter is rare, she just sits and stares. She rarely plays, it is killing me, she has even started crying in her sleep. My heart aches for her so badly, and she looks and me and cries mommy, like she's begging me to fix it, but I can't. That's what mommy's are for, to make the hurt and bad go away, but I can't help her, I can only try to make things as easy as possible. I try not to let her see me cry or get sad but I do at times. I try not to blame myself but I do a lot...if only my body worked right and I carried her full term like I was supposed to then she wouldn't have to go through all this. For now I am just praying for better days and hope that soon she will return to her normal, happy, sweet self. 

Her new car seat

Even the new car seat is difficult to work with...The buckle sits so low and the straps barely fit around her. But we are making it work the best we can. The hospital provided us with this car seat to use while she is in the cast, we are lucky because most hospitals don't do that and even though UIHC does they usually have a waiting list for one. But we planned ahead and had them hold one for her a few weeks ago =)
(her bow is from https://www.facebook.com/Lilybug.boutique for those of you interested =) dress up is absolutely necessary for spica kids lol)

We are home!

So we were sent home yesterday! So far our biggest struggle has been keeping her comfortable and finding places where she can sit/sleep. Since her hip area was still so tight even after they cut tendons and ligaments we have to keep her at a 45 degree angle or higher at all times for the next 3-6wks. So she is basically sitting always, and with the way the cast is made it's difficult to find things that she can sit in or on. So far here is what we are using...

A kids bean bag arm chair (disney princess) bought at walmart

An old style pool lounge chair with adjustable reclining positions (we stacked pillows inside and this is what she sleeps on in our bedroom since it has sides like bed rails)

We put a lap top table over her princess chair and set toys on it so she can play.

New dvds! Basically she is stuck so I like to have educational things for her to watch to keep her from getting really bored.

A new stroller (Jeep Cherokee) Bought at walmart (we did just buy one a few weeks ago but it didn't work with her cast, so we bought this one last night)

We are feeding her where ever we can right now but are hoping to get a highchair that will fit her soon.

New clothes! Annabelle went from a size 6-9mos to now with the cast wearing 18-24mos so we have been slowly building a new wardrobe, but the good this is she can still use the bigger sizes when the cast comes off.

To water proof her cast and make it comfy I used duck tape (pink tiger stripes lol) and mole skin, so far it is working great.

She came down with a fever last night so I bought these things called BeKool they are cool gel adhesives that stick to the forehead and help her stay cool, she loved it.

I attempted to make a spica cast bib but haven't gotten it down yet, so far we are using Assurance pads (in the adult diaper section) we tuck them into her cast incase she throws up.

New diapers! Annabelle went from a size 3 diaper to a size 6 with the cast, she is so swollen right now that a newborn diaper wont fit inside the diapering hole in the cast so for now we are using poise pads and then putting her diaper over that.

I hope I didn't forget anything, but that is the list of things we are using so far. My husband goes back to work tonight so please keep me in your prayers as I will be going at this alone for the first time tonight.

Surgery and Recovery

Surgery didn't go as well as we would have hoped. They did end up having to do an open reduction. But on the up side it wasn't the kind of open reduction I was familiar with. They didn't have to do the large cut down her let. They still did the small cut on the inner thigh but they had hoped to put the hip back in place without cutting tendons, that didn't happen. Not only did they have to cut tendons but they had to cut more than what they wanted too and unfortunately her hip area is still pretty tight. So now she runs a higher risk of her hip coming back out of the socket, and if that happens we have to do this hip surgery all over again. Due to the risk we now have to keep her at a 45 degree angle or higher at all times for the next 3 weeks. She is in a massive amount of pain at this time and we are staying on top of her pain meds to make sure she stays comfortable. We did have a rough day, the surgeons casted over her g-tube on accident and then it took them two times of trying to cut a hole to finally get it right so she could eat. Also her iv became blocked and the nurses dug around in her vein for 15mins trying to fix it before I made them take it out, she then had to have another iv placed in the other hand. 

The picture above is of her cast being water proofed, they use water proof tape around the opening for the diaper to keep moisture out. She is currently in the plaster cast, but before she goes home they will cast over it with some purple casting. It has been a super long day, Annabelle is finally resting and I think I might read a bit of my book and take a nap with her.

Tomorrows Surgery

Surgery is tomorrow, we are nervous, scared, worried and excited about the end result. We are hoping for a closed reduction, that is the easier option. With the closed reduction they will make a small incision in the inner thigh and go in and try to pop the hip back into socket. Now with Annabelle having the possible crushed hip socket they may end up having to do an open reduction which we are hoping doesn't happen. In the open reduction they will make a long incision along the outside of the hip bone down her thigh, they will then go in and reconstruct the hip socket and then insert the hip bone into the new hip socket. The open surgery will be much more painful and we are hoping it doesn't have to happen. We will be running around like crazy today picking up all the supplies we will need for the hospital. I probably wont update the blog until after the surgery so keep checking back for updates on her progress. Hope everyone is having a wonderful day, keep us in your prayers.

Annabelle's Journey

For those of you just getting to know Annabelle, here is her story in a nutshell. Something happened to me during my pregnancy that made my water break too early, the doctors guess it happened somewhere between 11-15wks gestation. I was then diagnosed with severe oligohydramnios (I had no amniotic fluid left, less than 1cm) and we were given the sad news that our unborn baby may never live. We almost lost Annabelle when I went into labor at 19wks but our prayers were answered as contractions stopped and I didn't dilate past 1.5cm. I had severe bleeding during the pregnancy and at 25wks something awful happened. The bleeding got worse and Annabelle's heart rate dropped, we had an emergency c-section. While delivering Annabelle the doctors found that my placenta had begun to pull away from the wall of my uterus, if I wasn't being closely monitored that day they would have lost us both. Annabelle was born at a tiny 1lb 6oz she dropped weight after birth and her lowest weight was 1lb 2oz. She was on life support for the first few months and then on the cpap and finally on oxygen. She got off of her oxygen in december! She also has a small hole in her heart that her doctors are monitoring. So far we have been through several procedures. Since Annabelle had no fluid in the womb her body was badly twisted. She had her legs and feet casted to fix them last year. She also issues/difficulty eating and has had to surgeries so far to insert g-tube devices. She now eats completely by g-tube but we are working with a therapist to get her eating by mouth. Annabelle also had ROP after birth, which is a scary disease that messes with her eyes. Her ROP is now gone and we are thankful! She sees a physical and occupational therapist once a week. Annabelle is almost 14mos old her corrected age is 10mos old, she doesn't crawl, she wont do tummy time, she doesn't pull her self up on things and she just learned to sit. She also was born with Congenital left hip dislocation with a possible crushed hip socket. Her hip surgery this thursday 4/26/12 should help her be able to move more like a normal baby. In this blog I will post her updates after surgery and to tell how she is doing. Thank you all for following along!