The boys are three months today. They are probably a couple of the smallest three month olds at four and a half and five pounds but so darn cute all the same. Where to begin? I can’t believe its been only three days since I last updated and yet there is so much more that has happened.
For starters, Nicholas came off of oxygen!!!! Alex had just come off of it earlier in the week but we would have never expected Nicholas to not require it. I thought for certain we would be taking him home with it because he has needed such high amounts for so long. It never ceases to amaze me what these little babies can do.
They have both come leaps and bounds from last week with bottle feeding. Nicholas is gradually taking more and more although he still struggles with this. We think his reflux and issues with his hernia and constant gas pains are interfering with his efforts. He regularly gags and chokes during bottle feeding which is not much fun for either of us and I feel terrible for him. (We are currently waiting a surgical consult to find out when he can have his hernia repaired). The good news is that he definitely seems more interested in taking the bottle and feeling hungry and actually even on a bad try, he still takes about 30cc’s, and on a good day the whole bottle (55cc’s).
Alex is now taking full bottles EVERY feeding for the last couple of days. It is wonderful. He lets you know when he’s hungry and he wolfs it down, today he finished his bottle and we swear he would have drank even more if given. Right now they are both off of continuous feeding and they are recording what they are able to take over a 24 hour period to determine if either still require the feeding tube or if it can go away. We are pretty certain that Alex will likely lose his feeding tube tomorrow because he’s doing so well and gaining well. He tipped the scales at 5 pounds, 3 ounces today!!!! Its shocking that they were only taking 5-10cc’s just a week ago to where we are now.
We are a little more worried about Nicholas, he doesn’t seem to be gaining, and in fact has lost some due to all the effort he expends. He fatigues a lot faster. He’s also anemic on top of everything else which could be making him more tired, definitely more pale. They don’t want to keep giving him transfusions because than his body will never learn how to do it on its own so we just watch and wait. All in all I am guessing he’ll need the feeding tube a bit longer until he can manage more bottle feeding but we are thrilled at how much progress he has already made!!!!
And the biggest news was that Mark and I heard from one of Alex’s nurses that the team would likely be discussing discharge for him this week…….yep, you read it right. She says the feeding issues were really the last major hurdle for him and everything else could probably be handled as outpatient appointments. You can imagine our sheer elation followed by terror and angst. Terror because who ever feels ready to bring their new baby home for the first time, let alone one who has had such a rough road, is still on about 10 medications, and has this huge bubble on the side of his sweet little head that we are told is all fine except he will need to transition to a VP shunt in the near future, just probably not now but we will have to be on the lookout for signs that his shunt is no longer working properly. Want to know what the signs are? Irritability, tiredness….ha,ha….that doesn’t describe any other babies, does it? Okay to be fair they also say he could throw up or possibly not want to eat, which would definitely be different for our growing boy but still….I am afraid I will be a wreck until its finally transitioned (oh wait, we’ll have to look for signs of malfunction even with the new shunt so scratch that, I’ll be a wreck probably until……well experienced parents say about however many years you are a parent.. hmmm….oh well then, might as well start getting used to it.
Then comes the angst of knowing while we get to bring one of our babies home, the other is still a ways behind him. I can’t imagine leaving one of my babies in the hospital knowing that when I have his brother home, I won’t be able to just get in the car and visit with him as I do the both of them now. Don’t get me wrong, I’ll be sooo happy to have Alex home but having the other still in the NICU makes my heart break already and it hasn’t even happened yet. I know I have a very willing family who will take care of Alex for me a couple of hours so I can visit with Nicholas and I’m sure it will have to come to that but who is ever ready to leave their newborn baby, let alone my preemie who is just home himself from the hospital. I know other parents have survived this, I know inevitably we will too, but I don’t have to like it and I may even have to cry it out sometimes to get it out of my system and then get on with it (so if you’re around me at one of these times, just bear with me, sorry Mark).
We will wait to hear what the team says tomorrow about the exact discharge plan. Mark and I are praying, ironically that maybe Alex will stay just a little longer so the time between them each coming home is less and we can be with both in the same place for now. Crazy that we would actually wish that after all of this time of desperately wanting out of the hospital. But I guess I should have emphasized we want out of the hospital with both of our boys!! We don’t know how much Nicholas’s surgery will set him back due to having him need to go back on the ventilator for it but we pray that he can get this done soon so he can start feeling better and hopefully have a very quick recovery! Thank you everyone for their continued thoughts and prayers!!!
Nicholas without oxygen. Only one more tube to go……
Had to take a picture of Nicholas with an oxygen saturation of 100% without any extra oxygen, just amazing!!! We have such a love/hate relationship with these monitors.