Alex however has had a week very unlike him. Just as abruptly as his brother changed in one direction, Alex seems largely uninterested in feeding. We are taking a full hour at times trying to get even two ounces in him, when he used to chug 3 to even 4 ounces a feeding. Alex has never been one to miss a meal so we are concerned. At times we feel like we're really almost force feeding him because he wants to stop after half an ounce or an ounce. We've been to the pediatrician, and even called neurosurgery with concerns about the shunt but were just not sure what is going on. Otherwise he's acting very much like his sweet self so maybe its just a short phase. His weight check with homecare was only eight pounds, 3 ounces, just an ounce more than his weight check with them last week. With our persistence, he is eating a bit more the last few days. We have lots of appointments this week including GI, Neurosurgery, and pulmonary so hopefully someone will have some ideas.
We had an appointment with urology last Friday which lasted almost two hours. We loved our doctor, and didn't realize it was someone who had already worked with Alex before in the NICU so that was a nice surprise. He took a lot of time with us explaining what was in the future for Alex. Alex will be needing some scans to check his kidney and bladder function again just to make sure that everything is working okay given concerns he had while in the NICU. Children with Spina Bifida we've learned commonly have problems relating to this so we are reassured that this will be monitored closely. We also spoke in great detail about Alex's hypospadius and corrective surgery he will need when he's bigger, about a year old. The surgery will be more extensive than we anticipated and he may need more than one surgery but time will tell and we are confident he is in good hands.
While we were there we also just asked the urologist briefly about Nicholas since he has yet to be circumcised since his hernia surgery. Fortunately the urologist was nice enough to sneak in an evaluation and discovered that Nicholas too needs more than just a simple procedure to have everything as it needs to be. He too will need a surgery when he is older, again about a year old but not as complicated a surgery as his brother. I have to admit I left this appointment feeling a bit saddened that more surgeries loom in their future. We want nothing more than to have all of this behind them but I hold onto the fact that they will still be young enough hopefully not to remember all of this.
On a great note, today we had over some of our favorite people that we were fortunate to get to know while in the NICU, along with their little ones. We had a wonderful time catching up and seeing the other NICU "graduates" that we once kept almost as close tabs on as we did our own babies. It is so wonderful to see everyone growing and doing so well. Seems like a lifetime ago we lived in the NICU, and yet we've really only been home about a month.
I know worrying goes along with the new job description of being a parent. We talked about this today with our other NICU parents. Ours may be a little more intensified ofcourse because of the very hard start all of our children had, so to say I'm a little stressed about the upcoming cold/flu season is a HUGE understatement. The boys doctors and the NICU staff drilled it home to us that this will be the hardest season to get through, the first season for the boys. They look like healthy full term babies now but their immune systems are so far from it. Ironically they are too small to get many of the vaccines that might help keep them healthy and yet they are the most vulnerable.
It is up to Mark and I to do whatever we can to keep them healthy which means for us and our family to get the flu shots, keep away from anyone who is sick, and also to minimize crowds and handling of them to try to keep germs and viruses at bay as much as possible. I know this is disappointing to the many people who have been following their progress and no doubt want to give them a squeeze or get their baby fix but please know we are not trying to be "stingy" with them, but instead do what is in our power to get them through this first critical year and let their immune systems and lungs mature. We have been cautioned that with their BPD (lung disease) even a simple cold this first season could be very hard on their lungs and frequently requires re-hospitalization for these very little micro-preemies. We know we can't keep them in a bubble, (Trust me, I've looked, can't find the real heavy duty ones) but if they do get sick this year, we want to know that its not because we weren't as vigilant as we could be for them.
Blessings to all!!!!
Our boys always seem to be so well behaved with company....maybe we should have them back more often, because ofcourse they made up for it for the next four hours as soon as everyone left, ha,ha. But boy they sure look sweet (and quiet) here :)
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