First Week at Home and Other Updates

We've officially been home for one week! Our little princess's short 18 days with us have been a whirlwind of emotions including a joy deeper than we've ever experienced. We have learned so much and been truly touched by our family and friends coming together to surround us with love and support.

Overall, Claire is a very happy baby and her smile melts my heart! She loves to be swaddled, held, and she would be a fantastic sleeper if we didn't still have to wake her every 2-3 hours to try to get her to eat and gain weight. Anna and Levi adore her. Anna is always trying to dress her, put bows on her head, and help take care of her and Levi stops what he's doing to kiss her almost constantly. She is a perfect fit for this crazy family!

A rough day today and she's still smiling!

Today we went to Marybridge for an appointment with Claire's surgeon. She taught me how to do her anal dilations, Claire and I both hate them but they are important for preventing stricture because of her scar tissue. We will continue to see her surgeon weekly for a while so that she can measure the progress of the dilations and increase the size as needed until Claire is back to being where a typical baby her size should be (she estimates this to take about 6-7 months). I shouldn't have came home and googled because it says that the dilations cause small tears :(. I will definitely be praying for strength for us to get through them, my poor baby!

Claire's weight check today wasn't what we were hoping for either, she continues to lose weight (6lb 13oz today) so we ended up also seeing a dietician and GI specialist as well. That's the good thing about Marybridge, everything is in one place and the doctors are amazing! Our surgeon let them know she was concerned about Claire's weight gain and there were 3 other specialists who made time to come see us before we left the exam room. I will have to remember to plan on our appointments taking a lot longer than expected, we were there for almost 3 hours after we finally finished with everything (and we received 3 voicemails from other Marybridge clinics just in the time that we were there)! The working theory right now is that she's most likely aspirating. She has to work very hard to eat and it's obvious that she's uncomfortable eating (watery and red puffy eyes, choking, gagging) so we are having a hard time motivating her to eat. We have appointments now to see both the speech therapist (for feeding therapy) and GI specialist again on Monday to hopefully make some progress. We already have 4-5 appointments per week between all of the clinics for the next couple of weeks so they're definitely keeping us busy!

Being out of the house for any length of time is proving tricky because of our pumping/eating routine. It takes Claire quite a long time to eat and I have to be fully focused on how I'm holding her (supporting her neck, head and jaw with both hands) and how she's swallowing - and it's definitely harder when the big kids don't want to cooperate and we're not at home - I'm sure we'll get more of a routine down in time and as she gets stronger but for now we are taking it one day at a time and celebrating every little bit of progress!

Prayer Requests:
-That Claire begins to gain weight.
-That the swallow study provides clear answers so that we can start to feed her more effectively and with less discomfort, I would still love to breastfeed but that is looking like more and more of a stretch. I would still love continued prayer that maybe someday it would be a possibility.
-That her dilations go as smoothly and painlessly as possible - for both baby and mommy.

Needs:
-With Claire's appointments (length and content) it is important that I can give her and the specialists my full attention, especially for the therapy appointments, so we are looking for help with childcare for Anna and Levi this summer. If you have any recommendations, please let us know. I would love to have a couple so that we have backups with so many upcoming appointments on varying days and times. It is my hope that we are able to figure out a more consistent routine once school starts and we can schedule most of our appointments when the "big kids" are at school.

And, as always, thank you for taking the time to read our updates and to keep us in your thoughts and prayers. We appreciate each and every one of you.