Claire moved back up into our old room 503 again on Saturday afternoon, the time after surgery flew by! We have been struggling to keep her weight up and her liver enzymes down. Just when you think things are getting better they start going in the opposite direction and that is the hardest part of being here right now are the ups and downs. We are on the road to going home soon and we keep getting that question, "When do you think that you are going to go home". It makes me so flustered because I have no clue and we are not making much progress with Claire's weight which is the main concern. She tries hard and can only get down 30ml/1 ounce at a feeding and she needs 2 ounces every 3 hours at least. So we have to put half of her feedings down her NG tube. Her doctor recommended fortifying her milk with formula to help add calories and we started that Monday night. Now that her surgery is done we have not had as many problems with vomiting, which makes me extremely happy. I had an appointment with a lactation consultant today from Methodist and she told me that I am doing everything right, however I am still extremely frustrated and feel inadequate. Claire had a sink bath this morning and ended up having a bowl movement, good thing we are still at the hospital and we used their linens! :) We still have a number of tests that they want to repeat for her MRI, EEG, and a sweat test to hopefully put to bed any further Cystic Fibrosis concerns. Two good things have come of the past few days I found my first pair of normal non-maternity jeans that fit and Claire finally found a bottle that she is more comfortable feeding from. Poor Claire she lost some hair around the middle of her head and now she has so much thick hair at the base of the back of her neck and it looks like a mullet. I included a picture for fun!
5 comments:
Dalrymples,
I know and understand going home and the questions that arise. You will get to go home when Claire is ready. I also know feeding frustrations. It will get better! She will get stronger and will be downing 8 ounces in no time, or breast feeding for ever too! Have you tried different bottles and nipples-fast,slow? There are also the soothie bottles by first year that have the same nipples as the hopitol pacis? Maybe let a nurse feed her and see if they have any insight? I hope that I know you when she is a teenager because she is going to be such a stubborn little girl-he he! It sounds like you are doing everything you can do,you are not inadequate at all! You have been thrown more challenges than anyone and you are still standing and sound sane! I think it is awesome you are still pumping and trying to nurse! I hope you guys have a Merry Christmas! You have so much to be thakful for! Come on little Claire-get some meat on those thighs. The Millers
Just wanted to wish you all a Merry Christmas! Even if you're in the hospital at least you will have your family there with you!! We love you and will be thinking of you!
Merry Christmas!
Laura and Rusty
Mindy and Chad,
I can sympathize with the mullet problem:) Both of my children were born with them and Sammi still has one...must come from Tim's side of the family :) Someday I'll show you pictures. Thought you might need a laugh. We're thinking about you all. Be well and have a Merry Christmas!
Anna, Tim, Mikey, & Sammi
Merry Christmas little Claire.....Keep the positve thoughts Mom and Dad!
It blows my mind, that no matter how many tubes are attached and how much she has gone thru, Claire is still one of the most BEAUTIFUL little girls I've ever seen. I love visiting your blog and seeing all her pictures and progress. I hope you have a nice holiday and that you all get to go home together soon. Best wishes!
- Kali Peterson
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