For the first time in the history of the little dragons, we had a surgery scheduled a week out. Don't get me wrong, we love the last minute fire alarms that typically happen when a surgery has to take place! They scheduled the 16th for James to have a shunt conversion, and we were all systems go... until this weekend, that is.
James suddenly stopped needing to be "tapped" for fluid and went 48 hours between taps. They started taking out less and less. Today after his head ultrasound, the neurosurgeon decided to cancel the surgery and watch James for a few more days. He may not need a shunt conversion after all. He may be one of those miracle babies whose villi starts reabsorbing the fluid and/or whose body stops producing excess cerebral spinal fluid. James might not need a shunt now, but he may need one later. We are in watch and wait mode.
In growth news, Maisie weighs 7lbs 2oz and James weighs 6lbs 3oz! They both are eating well and growing well, though James has some catching up to do.
I am asked about a hundred times a day how the babies are doing at home, if James is home yet, or when James is coming home. Perhaps its because I work with seniors and some of them have dementia. Besides that, everyone I know is so excited to hear about the little dragons and wants to know how they are doing every day. We are so thankful for all the thoughts, well wishes, and compassion we have seen from friends all over.
With all the extenuating circumstances, it's difficult to explain why James is still in the hospital and why he can't be home with us right now. James has accomplished so much, and he is almost there. Believe me, we are so ready to have our little dragon home with us!
So, what does James need to do to be able to come home?
1. Be on low flow oxygen. He's currently working on weaning but as of the moment he's still on high flow.
2. Have a plan with regards to the VAD / shunt or no shunt. We'd prefer not to have to come back to the hospital once we leave.
3. Have five days without a bradycardia episode. He's been doing awesome with this, so we hope he keeps it up with the above situation.
4. Car seat test, hearing test, continued eye exam, etc. These are all standard discharge plans.
5. Continue taking all feeds by bottle. He's doing awesome with this!
6. Stay healthy. We are heading into RSV season with two micro-preemies, one of which has very compromised lungs. Hospitals in general are not the healthiest of places. This is perhaps the most important key to James coming home.