So Finley has a Choledochal Cyst which is completely blocking her bile duct- which is the cause of her beige poo. Finley is about a one in a million that lucked out to to get 2 rare conditions. Maybe she should play the lottery at some point. I will write a longer post later – but this does mean another surgery. Either next week, or sooner if she starts showing signs of infection. This will mean 4-7 days in the hospital after a 3-4 hour surgery. Please pray that she doesn’t get a infection while we are waiting and that she has a smooth surgery and recovery. Yes, Dr. Bliss is doing this surgery for us as well, so I feel in excellent hands- both his and God’s.
How do I feel? A little scared, but mostly frustrated and sad that we just got home and we are headed back to the hospital again. Just another part of our journey…. Please keep Finley in your prayers.
So the past 24 hours has held some unplanned excitement.. first Finley was spitting up more than normal yesterday (3x) and larger amounts – so I called the Pediatrician and since my Dr was out, the covering Doctor thought based on Finley’s condition that is could have been an obstruction or reherniation and wanted me to go to the ER. That kinda freaked me out since I was thinking more along the lines that it was her reflux. 3 hours in the ER later (thank you Stacy for hanging with me) Finley was determined to not be reherniating and was sent home. I spoke to the Ped this morning and we agreed that I would track her episodes and I was going to try some other things to manage her reflux and we would follow up next week. After a fun morning at the Pumpkin Patch with some friends we came home and I changed Finley’s diaper to find beige poo. Beige… like the color of Butt paste. Not normal. So I call the Ped again and they have me come in so they can examine the diaper and check Finley out since beige poo can be a bile obstruction or liver problems.. Dr Snyder agreed it was abnormal poo, but without any other symptoms right now that would point to those two issues we are hoping it is an anomaly. So we have to wait and watch her poo for the next couple of days and if she has more beige poos, that means going back in to Emanuel for further testing. Please pray that this is nothing and she is fine. We really have had our fill of doctors and hospitals.
We had our first follow up appointment with Dr Bliss today (actually Julie) to check Finley’s weight since they wanted to make sure she was gaining weight at home – I was a little worried since without a scale I can’t be sure how much she was getting from me. On Thursday’s Pediatrician appointment she weighed 9lbs 10.5 ounces and today she weighs 9lbs 15 ounces!! She has gained 5 ounces since checking out on Wednesday. So happy that she is gaining so well now – I had a feeling she would do better once we got home! We will be working closely (weekly) with the NICU nutritionist to track her weight and make sure she continues on a positive growth track.
Things are going really well – I am just thrilled to be at home and to finally be a FAMILY of FOUR. We are all under one roof now and I will forever be so grateful. I am still in awe that we came home without a single tube or wire in sight. Her only medicines are her multivitamin and her Prilosec. I will be praising God for all of my days.
Rowan has been acting out a little more now, but I am hopeful that once she gets adjusted to things and we are able to consistently spend some one-on-one time with her, she will return to her normal 3 year old self with it’s normal amount of tandrums.
That’s all for now, Miss Finley is waking from her nap…