Day 22 in the nicu

Yesterday Ellie took her first car ride (ambulance) to Children's Hospital. She is all set up there now and the nurses/doc/staff are all working closely to encourage her swallowing issues right now. The main problem with Ellie now is breathing while she swallows. Even if there is a very small amount of liquid in her mouth the actual concept of swallowing anything to her is very hard and overwhelms her making her heart rate drop. We are praying our little baby through this and hoping for a crystal clear results as her parents. Today after talking with our friend (Philip) who happens to be a nicu fellow at Children's this month, told us after looking over her swallow test and talking with the OT that gave Ellie a bottle today that Ellie will be there for a few more weeks. My heart broke. Ellie is already 3 weeks old and to think of her being away for another day longer kills me, but then today I got an e-mail from Philip's wife. The e-mail told me that Philip wasn't even on call this month, but last week he took the entire month of Feb for someone else. Ellie went to Children's Feb 1st- we are believing God sure does know what he is doing in the midst of all of this. Philip has been amazing already talking with many doctors there and specialist who work with swallowing issues daily. This might take some time - and the waiting is what's killing Mike and I.

There is a song I think I listen to every time I drive to the nicu- it's a David Crowder song and the words say- "shine your light so I can see you, bind me to you, and bring me close to you and to my knees." That songs has given me something to raise my hands to. Ellie might have this eating issue the rest of her life- does that scare me to death- absolutely! We have to hang on to something and that is our hope right now. It's amazing how so many of the small things in life are completely thrown out the window now. I heard a girl talking about how mad she was b/c she couldn't see all of her clothes in her closet and how she wants to move into a bigger house that has a walk-in closet b/c she needs to see all of her clothes. God gives us our limits for sure and we all get stressed all the time about the petty things in life- but a closet full of clothes, really! Ellie has already given Mike and I so much to be thankful for- I will never look at a bottle the same or when someone drinks one- I will look at that as a miracle! I know there is so much now I have taken for granted constantly.

Those of you that have cried with me, prayed for Ellie, brought meals, it all have given me so much strength to know the Body of Christ is here and covering our sweet beautiful girl! Thank you.

How to pray: Ellie will only be taking 2 bottles a day for now with the OT. The rest of her feedings will be given to her by nasal tube to let her rest and grow. The feedings completely wear her out. Please pray for the OT to be given insight in feeding Ellie and that she will find the right combination of technique and nipple. Also, pray that Ellie will learn how coordinate breathing and swallowing. Thank you.