It's been an eventful few days. The CAT scan results finally came back (it has been a long 4 days!!). It showed nothing more than his kidney ultrasound did when he was first born, which was cystic, enlarged kidneys...but no tumors! (YEA!) They're planning to use the CAT scan as a baseline for future ultrasounds that he'll get every 3 months to make sure things aren't getting larger or are multiplying, and of course to check for tumors (if you may remember he is prone to them with the BWS until about age 6). So one biggie down for now...
This morning when I came in the nurse told me that last night and early this morning they heard a heart murmur on him. So they ordered an EKG this afternoon. It was so awful, and I couldn't be in the room for a lot of it as they seemed to be torturing the poor boy. He was so mad and screaming the whole time and it made me so upset. The ultrasound tech was not being gentle at all. The most frustrating part was that they couldn't get an entire view of his heart because of an angle that the lab tech couldn't get to. He has a distended tummy which prevented her from digging down and up his ribs for the pic, although let me tell you she tried with all her superman-might. I could go on and on about how mad I was by the end of the test, but in the end the results came back tonight. So far so good. We haven't heard the official news yet, but if there was something to report they would have told us by now. Tomorrow they'll let us know for sure.
Also, the past 2 days has been a trial and error approach to figuring out what to do with his blood sugars! They are at the max levels they can be at with the meds, so that can't be adjusted, and are now putting quite a bit of formula in the breastmilk I'm giving him (in an effort to make his meals denser with calories) to up those glucose levels. Every day it goes up which has been hard on his tummy to digest, but it was looking promising as in the last 2 days, it hadn't dipped! Well, the boy must have heard the docs talking about the possibility of going home again, because it dipped tonight (42)! (GRRRRR!) So we're back to the drawing board again...so frustrating.
The head of Neonatology at Meriter Hospital came in over the weekend and did rounds on Sunday. Apparently they made Declan into a case study with the other docs in the area. Because of his pretty rare syndrome and the problems he's having with the hypoglycemia, he's famous!! (yea??)
Declan also started getting physical therapy for strengthening his weaker leg and arm, in an effort to stave off problems with crawling and walking later on. He'll be getting that, along with occupational therapy and speech therapy (because of his enlarged tongue) when he goes home. And the best part is they'll come to the house!! :) One less road trip to his many docs! Wha-who!!
Luke also started back to work on Monday, which has made the trips to the hospital more tricky to juggle. But luckily I'm feeling better and am able to do most of the things I did before I was sick. Each day has presented its own challenges for me and our baby boy, but we're trudging on. It's hard to believe that Declan is 2-1/2 weeks old already. We've been blessed with many good test results so far, and hopefully something will work its way out with his blood sugars too. As hard as it is to leave the hospital every night without him, we're glad he's there and are playing it safe.
Thanks for continuing to keep Declan in your prayers and thoughts!! We are so grateful and blessed by them!
Love,
Christy, Luke, Liam, and Declan









So tomorrow morning is his circumcision, and they want to monitor him for a few hours after that just to make sure things are going okay, and then he gets to come home. 











