Hey everyone!
Well, as you can see from the title, Ellie is still trying to get over the hump from her surgery. As you can see from the pictures that Matt posted earlier, Ellie is resting quite comfortably. They are now sedating her continuously. She is pretty much sleeping all day, but she is still moving her arms and legs and twitching her eyes. She is also moving her beautiful little mouth!!! It is the cutest thing to see. She was blowing bubbles today and puckering her lips up. We all loved to watch this! Matt and I hate not getting to hold her, but we just focus on all the other things. We only have 3 more days till we can hold her again. I am sure the time will go by fast.
On a medical note, Ellie looks and rests very well as what the doctors are telling us. She is retaining fluid, which is normal after surgery. They have increased the medicines to eliminate some of that fluid. Earlier today her diaper was dry. Tonight around 9 pm she had a huge pee diaper. We were very glad to see that. That hopefully means she is starting to rid herself of some of the fluid. The other issue the doctors are watching right now is the carbon dioxide in her blood. For a normal adult the average blood gas reading (that is what they call it when they are checking for carbon dioxide in blood) is around 45. On Friday, Ellie's was 50 right after surgery. Today it was going back and forth between the 70's and the 90's. The doctors are trying to tweak Ellie's vent settings to get her to rid herself of some of this carbon dioxide. They still say some of this is normal for after surgery and do not seem overly concerned. They are going to do another blood gas sometime around 4 in the morning. What they are hoping is the last vent setting that they made will have caused the gas reading to go down. We are praying for that change! Even with all of this, the doctors still say Ellie looks good. Her vitals are really good and that's good. I think the overall census is they think she is trying to bounce back from the surgery. Ellie is a case they have never seen before. Because of that, they have to be really careful with what they try on Ellie. They will not make any drastic changes that could hurt her. That is one of the many reasons we are so thankful for Children's. They care so much and work together as a team. Before they did anything tonight, several different doctors were consulted to come up with an agreement of what would be best for Ellie. We feel so safe with our daughter in their care.
Today was an unusually quiet day in the NICU. So quiet it made me uneasy. You really have to be there to know what we are talking about, but Ellie's room is normally very loud, noisy and full of babies. Today when we came in, there were only 3 babies left in Ellie's room. It was so silent. I guess you could say I have gotten use to the noise so when it's not there I don't know what to do with myself. I can't and won't say but something that I witnessed in our room really upset me this weekend. Let me clarify, it didn't have anything to do with Ellie. You see so much in the NICU. As a mom and a mom who has lost a child, some things to just get right to your heart. You almost feel in a way you relive that loss all over again. I called my amazing friend Jessica today:) and she reminded me of a passage from our favorite book (I Will Carry You by Angie Smith, I think its safe to say Jessica and I would recommend ANYONE to read this book) that when you are upset and don't understand just to cry out to God. I pray everyday for Ellie and so many others, but I think sometimes I forget or don't feel right for just asking God why or what is your plan in all of this? Thank you Jessica for reminding me of this. I needed to hear that in a major way today.
Thank you all for your continued prayers for all 3 of us, especially Ellie. We feel your prayers each day. They are giving us strength in a way you could never imagine.
Love you all and we will update tomorrow!
Ellie's Mommy
