One Month

Time has flown by and, as of yesterday, Claire is one month old! She weighed in today at 7lb 4oz.

Here are some updates from our appointments this week.  

Cardiology: Her VSD (hole in her heart) has not changed since her last echo at birth, we were hoping that it would have started to close up on its own. We will go back again for another echo in 2 months and if it hasn't gotten smaller by the time that she's 5 months old, we will start to talk about surgically closing it at around 6 months.

Swallow Study: Claire is aspirating but there's good news. When she aspirates, she chokes and refuses to eat any more (this means that her body knows what to do!) and we also discovered that when she's laying fully on her side, swaddled tightly (so that she can focus better on coordinating her swallowing/breathing), and with good head/neck support, she doesn't seem to aspirate! So I have chosen to feed her exclusively this way so that we don't have to add thickener to the breast milk which could further aggravate her Hirschprung's Disease.

Feeding: There is still a concern about weight gain so they've asked me to limit trying to nurse to 10 minutes per feeding so that Claire still has enough energy left to finish her bottle and to get all of the calories that she needs. She just isn't yet able to breastfeed productively enough but my hope is that, with practice and as she gets stronger, she will be able to. She leaks A LOT of breastmilk out of the side of her mouth while she's eating as well (breast or bottle) which the therapist said is also due to her poor muscle tone, Claire must not have heard the part about it being liquid gold ;).

Tummy: Claire is still pooping pretty continuously with bouts of diarrhea/mucous, her surgeon suggested leaving her naked on a blanket as much as we can to help prevent diaper rash and so that it isn't pressed against her skin all of the time. We change her very often but it doesn't stop coming out so as soon as we change her, she is sitting in it again. Her surgeon warned us that their poop can shoot across the room and I saw firsthand what she meant all over the front of me yesterday... I guess it was only a matter of time!

We apologize that we haven't had time to respond to all of your messages and requests to come and visit. For those who are looking for an excuse to come and see us, a friend has set up a meal train: https://mealtrain.com/1kekq but you absolutely don't need an excuse, we can't wait for all of you to meet Claire and are so thankful for your continued support, encouragement and prayers <3!