Day 120

Today is now officially Noah's 120th day of life. It would be impossible for me to believe that Noah will be exactly 4 months old in just 5 more days if I hadn't been here living it day by day with him.

According to the NICU scales, Noah reached 8 lbs last night, more than 4 times his birth weight! It's amazing how quickly your arms get tired holding him when you don't have anything to support them. Lucky for me, Noah's favorite position lately is to be held up on my chest, with his head tucked under my chin. He has loved snuggling there the last couple of weeks, and I think it is due in part to some of the struggles he has recently faced. He just needs that little bit of extra reassurance you get from being so close. And to be honest, so do Darren and I.

Last week was a rough one for all three of us. Darren was feeling very low, having finally returned to work (we are so thankful to all of his co-workers at the state who donated their time to him, allowing him to be with us for so long!). In addition to missing having Darren around, I was struggling as we got closer to July 22nd, Noah's due date. Ever since Noah was born, I have felt guilty that my body wasn't able to care of Noah the way that it was meant to, and his upcoming due date was a daily reminder to me of what I had failed to do.

And poor Noah, who had been doing his best with his low-flow nasal cannula while learning to bottle feed, hit a dip in the road when (we think) he aspirated a little during one of his bottle feeds. He ended up needing to be switched to high flow nasal cannula with some antibiotics just in case he was developing pneumonia from the aspirate- not a huge setback in the grand scheme of things, but disappointing nonetheless. And to make matters worse, we learned on Wednesday (the 23rd) from his eye doctor that he would need to have laser surgery on his eyes to prevent his R.O.P. from progressing to the point where it would permanently damage his vision. Once again, a surgeon that Noah needed was on vacation, and I immediately prepared for battle mode to prevent him from having to be sent down to Boston for a third time. Thankfully, the surgeon agreed to come in early the next morning (5 a.m.!) just to do his procedure. Darren took the day unpaid to come and be with us. Obviously we were worried about the procedure, but knowing the overwhelming success rate they have for it, our real concern was that he had to be re-intubated while under anesthesia.

We were lucky though! With the help of some low dose steroids, Noah was able to be extubated to high flow cannula the next day. The neonatologists were still very concerned about his airway being smaller than it should be for his size, and they scheduled another bronchostomy to be performed Friday of this week. In the meantime, we asked to schedule a team meeting, including our favorite doctors, nurses and specialists, to come up with the best plan possible to get Noah home with us, to be held on August 12th.

Our stress continued this week, although for different reasons. We were finishing up our move to Livermore Falls, which included packing our remaining things (I still don't know how we have managed to collect so much crap!), bringing it to the new place, and cleaning the old place. Just to make things a little more difficult, in addition to Darren only being able to work on it after work each day, I had to travel back and forth from Portland each day so that we wouldn't have to give up our room here at the Ronald McDonald House. We certainly experience plenty of pain at the gas pumps this week! But we are excited about having a new home to bring Noah to, especially his nursery, and all of the space we will finally have.

While at the old place cleaning on Thursday morning, I couldn't stop thinking about the bronch that Noah had scheduled for the next day. Darren and I had been questioning in our minds since it had been scheduled whether it was worth doing, especially because some of our most trusted nurses were expressing the same feelings. He had already had two of them done, one here in Portland with the same specialist scheduled for the Friday bronch, and once down in Boston. The diagnosis was the same in both places - a "floppy" airway in laymen's terms, or tracheal and laryngeal malaysia and a lazy vocal chord in technical terms. Both places agreed that it was something that would only be solved with time and growth. And so Thursday while I was cleaning, I experienced a moment where I knew that it was not the right thing for Noah right now. It was a procedure that would require him being re-intubated (again!) and receiving more steroids to successfully extubate- and all of that just so that we could confirm what we already know. After checking with Darren to make sure he was on the same page, I called the NICU and spoke with the neonatologist about our decision. And for the first time since Noah was born, I was able to speak confidently and articulately to his medical team about what I thought was best for Noah. And when I was done, they agreed! I was so happy, and when I thought about it later, I realized that I finally felt like I was taking care of my son.
Now I don't mean for it to sound like Darren and I don't normally have a say in what goes on with Noah, or that we don't get to do all of the little things that are part of taking care of him, like baths, temperature taking, dressing, etc., because we do. It's just that up until that point, I had really relied on the medical team's guidance for what Noah needed, and basically gave my approval to whatever they thought was best. But in this instance, with support from some of our nurses that shared our concern, I was able to stand up and say, "this is what is best for my son, and I know it is because I am his mother." I was just so proud!

And in a nod to Celestine ( Sarah F. and my brother both know what I am talking about) it seemed like positive connections immediately began to pop up. His doctors decided he was doing well enough with his breathing that they could begin weening his pressure (tonight we are down to 1.5 liters, down from 3), and he could start bottle feeding again with thickened formula to hep prevent any more aspirating. And we are seeing some exciting developmental growth, including increased neck strength and turning himself from his tummy to his back while he is on his boppy. He has even started to coo occasionally when being held!

Now that's not to say that it is all smooth sailing of course - that's just not how it is on the NICU rollercoaster! Noah had a follow-up eye exam yesterday, and the doctor saw a little bit of bleeding in his right eye. But he is getting two kinds of eye drops now to clear it up, and the doctor is confident that it is nothing to get too worried about. But even with that little disappointment, we are feeling positive that Noah is on the upswing.

And while the NICU is the last place we wanted to be spending his 4 month birthday, we are confident that by his 5th he will be home!