Whew, it's been quite the weekend around here. I have lost all sense of time and if it weren't for the constant ticking of the clock on the wall, I wouldn't be so sure that time had not stood still.
I'm just going to go ahead and say it. We have had a great weekend enjoying our sweet boy. Friday was a bit of a rough day, though. When we went to see him for his 8 AM feeding, we realized he was having some digestive issues. They immediately rushed him down for x-rays and thankfully he got a clean bill of health on his stomach and intestines. The downside to his issues on Friday was that we had to stop feeding him for 24 hours. They also had to put in an IV and a NG tube (used for pulling stuff out of his belly and administering some meds). It was beyond difficult to see our little boy "hooked up" for the first time. We had been so relieved and proud that he had not been hooked up to anything, so it was a huge setback when he started requiring more care.
Since Friday, he's made improvements. Yesterday (Saturday), Will got a clean bill of health on his bladder, liver and kidneys. They were concerned about these since many people affected with Jeune's Syndrome have concerns with these organs. We were also able to begin feeding him again and throughout the day he showed signs of hunger and continued improving. The best news here is that we went from bottle feeding him limited amounts of breastmilk to now exclusively breastfeeding him. I can't even begin to tell you how relieved we are by this major development. The other little tidbit is that he's been reviewed by pulmonology and they have agreed that he's doing well with his breathing. He still has had zero breathing assistance, so they don't feel that there's any intervention or guidance they can provide at this time. That's also good news!
At around 3 AM today (Sunday), we also learned from doctors that they are thinking of letting us take Will into a parents room. This is a room just outside of the NICU doors where we'll be in full control of taking care of him. He will stay in the room with us and it will give us more privacy and normalcy with him to continue on with breastfeeding and ensuring he's ready to go home. He will still technically be in the NICU and we'll have a nurse assigned to him, but it's a MAJOR step in preparing him to go home. It also takes off so much worry from us. Late Saturday night, I was so worried about how we were going to handle breastfeeding him once I was discharged (that's happening this morning!). I found myself in tears trying to plan it all out and just a few hours later the doctors proposed the plan for him rooming in with us. Another giant prayer answered and such a relief!
We also sent off all of his DNA for full genome sequencing. I won't get into all the details behind this, but let's just say that it was quite the learning experience. It may take up to four months before we have a confirmed diagnosis on Will, but I'm not anxious for those results. I just want to love my boy. I just want to get him home and continue loving him every single minute of every day.
Your prayers are working. He has recovered from Friday's setback and we are now beginning discussions on the best way to get him released and home with us. It looks like we'll be here at least another couple of days, but at least he'll be in a room with us and we'll be taking care of him even more. It's truly a blessing and an answer to many prayers.
More to come soon!