Thursday, July 1, 2010

We're Home!

We finally got home around 9 last night! It was a rough night trying to figure out all of the tubing, feedings and battling an oxygen probe that still doesn't work right (waiting for new ones on back order ugh). I think Amber is glad to be home. She definitely missed sitting in her bouncy seat, that seems to be her favorite thing since we got back. When we came home from her first hospital stay she reacted to every toy like it was her long lost friend. This time she looks skeptically at them like they might bite her and prefers the toys she had in the hospital.
It is definitely going to take  time to adjust to the new schedule of feedings and medication, I'm sure in a few weeks it will feel like normal. What will be hard is organizing the boxes and boxes of medical supplies and assessing what we have and what we still might need.

Here is kind of an update on what's all going on/what went on by body parts:

Diaphragm: She actually had two central holes/hernias in her diaphragm they were both easily repaired no patch was needed. She has a small (maybe as long as my thumb) incision with dissolvable stitches, they're covered with steri strips (looks like gauze but similar to glue will fall off on they're own) but no special care is need and it looks really good. Her two week follow up is scheduled for next Friday the 9th

Heart: A post op echo cardiogram showed that her Mitral valve leak is no longer mild but severe and the left side of her heart is dilated. She also has high blood pressure. They have her on a blood pressure medication that seems to be working ok and she will have a follow  up echo done soon. As long as the echo shows that the medication is working she won't need surgery.

Throat: Her swallow study showed that she aspirates on baby food, regular liquids and nectar thick liquids. This means she is only safe to have liquids/foods that are as thick as honey. It also showed that she has silent aspiration meaning she's getting whatever she's eating in her air way even if she's showing no outwardly physical sings of it. During the study they thought her vocal cords were not coming together properly. They did a scope of her vocal cords and everything was fine. They would like to do a more conclusive test but they are in no rush to do it because her scope was fine and the test has to be done under anesthesia. So far Amber is doing amazing with the honey thickened breast milk (I know tmi sorry!!) but she is not sweaty (thanks to heart meds) and she is not choking at all!! It seems like a miracle.

Stomach/Feeding: This is the most complicated one. Amber's G-tube site seems to be healing alright, she does have a small bit of drainage and she's been having some weird bleeding the last few days. We're keeping a close eye on it and the Dr will take a look at it at her surgical follow up on the 9th. Because Amber is so small and not used to eating a lot we've been having a rough time with her g-tube feedings. When we were on the surgical floor they tried to increase her feedings too fast and we ran into a lot of really scary trouble. Thankfully CCS deals with kids like Amber all the time and they seem to have gotten a handle on her feedings now. It's not exactly the amount everyone would like to see her get but it a start. She is getting 24cc per hour of 26 calorie formula for 20 hours a day through her g-tube. She is also getting a minimum of 51/2 ounces (2 ounces at a time) of 26 calorie honey thick breast milk a day by mouth. The goal is that the combination of g-tube and mouth feedings will be at least 640ml per day (of course it would be more if she takes more by mouth however it can not be less that this). Everyone would like to see her be able to do more by mouth feedings, the problem is she burns a lot of calories to eat by mouth that she really wouldn't be gaining what she needs to develop properly. We have a follow up with nutrition on the 7th and hopefully at that appointment we will have  a bigger picture/plan of Amber's feeding.  All of the feeding is major life changing, more than they led us to believe when they "sold us" the g-tube, and it's definitely going to be a hard adjustment to make and a lot of levels.

We're taking everything one day at a time and trying to keep things as normal as possible. It is so nice to be home but I do miss having other moms like me to talk to and nurses to help. I was more comfortable bringing her home from the hospital when she was first born than I am now. I am very thankful though to have my mom, husband, friends and family (some who even have g-tube/special needs experience!) to help with all of her care. Of course the fact that she's so darn cute helps make everything better too!

Thank you again for all your thoughts and prayers while we were  in the hospital it really means a lot to our little family :)


  1. Thank you for the update, Skye. It sounds like things became more complicated when Amber was in the hospital but also sounds like that is a result of the doctors' ability to better determine her needs. I am glad that they have been able to help her. You are doing a great job! Keep up the good work!
    Aunt Julie

  2. Hoooray - you're home! There's no place like it :) You have much to manage my friend - & indeed you are doing a GREAT job!

    What an encouragment to read of friends/family that are supporting/loving/serving you in personal & practical ways (ministry!). It all reminds me of one of my all time favorite books called "All Together in One Place" about a group of women who travel across the Oregon Trail together. Personal strengths & weaknesses are exposed (we each seem to be a unique combination of both) on the journey - & it's there, in that extremely difficult journey, that They learn SO much - including what they're capable of AND how much they REALLY NEED each other.

    I imagine God is revealing strengths you never knew you had MommaSkye - but remember that His power is made perfect in weakness (see 2 Corinthians 12:8-10) & it's good to allow others to help when/where they can :)

    in His love.

  3. Hey Kiddo,

    Thanks for such a clear and deep explanation of the problems. I will happily tell people in church tomorrow of your triumphs and progress. There are a few people here praying for your small family and the larger family as well.

    Love YA


  4. Thank you for posting your updates. I miss you all and wish so much I could be close by to give you a hand and spend time with you. You are constantly in my thots and prayers. I thank God for all He has done for Amber in the past few weeks..and pray that God will give you strength for each new day!
    I wish I could you!