Well...it finally happened! The boys transferred hospitals on March 21st! One of their primary nurses was looking after them on the day they moved, so she got to be their transport nurse and I was SO thankful that she was there for them. I became a nervous wreck when we got the call that they were moving them, even though I knew it was coming. I almost asked to follow along behind the ambulance, but decided that a) I wouldn't get to the hospital in time and b) they were going to be just fine. I actually cried over the phone, but their amazing nurse AM consoled me and said that this was such good news. My only real concern was leaving their primary nurses, but things have been great at the new hospital.
Loving their new twin-sized bed.
Within arms reach.
They do things a little differently, which I'm still getting used to. Their sanitization process is ENTIRELY different, as in, not as strict. It freaked me out a little bit during our first visit, and their nurse told me that I didn't have to wipe down my phone, water bottle and milk bag anymore. And I certainly didn't have to wash my hands for 2 minutes. She even said that Lilah washed her hands better than some of the nurses there. I have to say though - I can't help it. I wipe down my phone every time. Phones are gross, and I touch mine while I'm snuggling with our boys. I also wipe down my water bottle because lord knows where those have been (I'm talking the plastic water bottles from the convenience store). I cut down my hand washing to a vigorous 1 minute. I figure I can wean myself off of the strict sanitization process as they get closer to coming home. Also, instead of primary nurses, they give you the same nurse for her entire stretch of shifts so that there is some consistency at least over the course of a few days. It's actually a pretty neat system, I like it!
I have never been so exhausted in my entire life. I suppose it comes with the territory of having multiples, but I often wonder if having multiples in the NICU (and a toddler at home) is even more draining than if they were home with us. As I type this, I think that 'yes', that must be the case. If our boys were home, I wouldn't have to spend 1.5 hours a day on the road just to go see them. I wouldn't be spending 5 hours at a time in a hospital sitting in uncomfortable chairs, going hungry and waiting to pee until my bladder is about to burst just so I wouldn't have to wash my chapped, cracked hands AGAIN. I wouldn't have to get dressed every day (or shower as often...to be honest, haha) just to feel presentable in public. I wouldn't have the emotional guilt of dragging Lilah around with me and dropping her off with babysitters (though she loves them) when she 'just wants to stay home with mama'. Throw in a kitchen renovation and some might call us crazy, but I'm too tired to care ;) I have been so wiped that I'm starting to notice that I'm getting even worse at retaining information. Right from the get go when these guys were born, I sort of entered into this hazy fog. I only remembered the most important of details, and everything else went in one ear and out the other. Now though, even some of the important stuff is slipping my mind and I'm starting to feel guilty, or neglectful. Like I should be remembering this stuff for the health and safety of my boys. I'm starting to realize how valuable sleep is going to be in these next couple of weeks before the boys come home, so that I can be as sharp as possible given the situation for their homecoming.
Nash
Just want to nibble on that chin.
Breathing: In our last update, Nash had just been moved to high flow nasal cannula and was rocking it. They slowly weaned him down on the flow, until one day deciding to trial him on room air and...he's STILL on room air! Such a smart little guy!! It's been almost two weeks of getting to know him and his beautiful face without all the tubes and tape all over it. What a gorgeous little man. The other day, his breathing started to get laboured and I could tell that his nose was stuffy. He's not normally a noisy breather, so I knew something was stuck in there. He also couldn't get settled...I wouldn't either if I couldn't breath through my nose! I insisted that we try and get him unplugged because of what happened last time - the booger wasn't noticed, and he'd struggled to breath for so long that he'd had to go back on CPAP! I was worried we'd need to take a step back if he got too tired and get back on some flow if we didn't fix his booger. The nurse really didn't want to suction him, so we just kept giving him saline drops. Finally, he sneezed and this GIANT booger flew out of his nose. You could actually see the relief on his sweet little face! Wondering how many more times I can write the word booger...
Our little blondie!
Feeding: Our little guys have been put on a feeding plan! OT met with them yesterday morning to see if they could help move things along a little quicker. They are progressing a little with their feeds, but just not as quickly as they'd like to see. What used to happen is that they boys would be very eager for one feed and then finish their entire bottle. But then for the next few feeds, they'd be so tuckered out that they'd barely take anything from breast or bottle before falling asleep and needing to be tube fed. So their feeding plan brings in a lot more consistency to each feed in hopes that it will help our boys learn to feed consistently as well. With each feed now, we offer either the bottle OR breast (never both) and only let them feed for a certain period of time (right now it's 15 minutes for Nash). He also needs some help with pacing, so we need to break suction after every 2-3 sucks and let him catch his breath. Whatever he doesn't finish within that period of time gets put through his feeding tube, and if they still seem to be awake and eager we'll give them a soother at the same time. If he's able to increase his oral feeding to 50% within 48 hours, they will increase the time he is allowed to feed orally each time. Hopefully this will speed up the learning process and get our boys ready to come home!
Bundled up after a good feed.
Seeing: After our last update, Nash was also diagnosed with ROP at his next eye exam. He was in Stage 1, Zone 2, just like his brother. At their eye exam a couple of days ago, their doctor said that his ROP was healing! Within a few weeks to a month he suspects that they will have no effects from ROP whatsoever. He will still have follow up eye exams every week until they're totally in the clear.
Weight: I hadn't collected their weights for almost a week, and nearly fell off my chair. Nash weighed in at 5lbs 13oz on April 6th! These guys are getting huge!
Always enjoys a snuggle.
Personality: Nash still seems like the serious one. He is more alert than ever when awake, but it's like he's awake for a reason (to eat) and he means business! If you sit him up to burp and then pause while you talk to a nurse for example, he'll start moving his head from side to side as if looking for me or his bottle or something to do. Reminding us that there's a job to be done and to get on with it! He sure does love his cuddles (they both do) and will instantly calm if you place a hand on his head and back, and especially if you sing to him. He has such a gorgeous smile.
Nash curled up next to Lincoln.
Other: Our poor Nash has an inguinal hernia! It's actually very common in preemies this young. He will require surgery to repair his hernia before discharge, and it's been scheduled for April 18th. We are nervous, but assured that it's very common and the risks from surgery are quite low. I'm so very deeply hoping that they won't need to put him under general anesthesia for the surgery. If this was the case, he'd need to be intubated and put on a ventilator, and then would need to wean him off of it over the days following his surgery. It just feels like an enormous set back, as both boys have managed to stay clear of the ventilator throughout their entire NICU stay and it would be such a shame to have to stick him on one now after all they've been through. One doctor mentioned that they may just give him a sort of epidural. I'm hoping this is the route our surgeon will take. Nash also has some mild nephrocalcinosis (calcium build up in the kidneys). It's also a very common preemie thing, and usually resolves itself within their first year of life. In cases where this doesn't happen, the build up may lead to kidney stones or even high blood pressure - though it's not common. AND our little man had a bath!! He loved it so much that he fell asleep while I was washing his hair. haha
Lincoln
We often catch this guy mid-yawn. I love it.
Breathing: Lincoln is still breathing room air all on his own! It's incredible to think that he's just been doing this for a few weeks, and yet it feels like forever.
Feeding: I mentioned Nash's feeding plan above, and the same goes for Lincoln! He's just slightly ahead of the game. He's getting more milk per feed because he's heavier (they base the dose per feed on their current weight), is given 20 minutes to feed orally each time, and 3-4 sucks before needing to break the seal so that he could catch his breath. I just hope it doesn't take too much longer for the boys to work their feeds up and come home. I know that once they're home it will be much more consistent for their feeds, as it'll just be us giving them their bottle or breast. Right now they're experiencing all sorts of different techniques that each nurse uses, so I imagine it's not the most ideal environment to be learning to feed orally! HOWEVER! I just had the most amazing nursing session with Lincoln. He was latched on and sucking for nearly 20 minutes straight. It was amazing. He got tonnes of milk, flooded himself only once, and paced himself nearly the whole time. I was in such awe, and he gave me so much hope for the days to come. These are such smart little men.
Milk coma.
Seeing: Lincoln was diagnosed with ROP, Stage 1, Zone 2 at his very first eye exam a while back. However, at his last eye exam he was also showing healing in his retina!! He's given the same prognosis - that within a few weeks to a month he will have no effects from his ROP. Such wonderful news :)
Weight: Our big man is getting bigger still. He's weighing in at 6lbs 6oz. It's so hard to imagine how small they used to be, how big they've gotten, and how quickly they got there. I always thought that the silver lining of our boys being born so early was that we sort of got to extend their 'newborn' days. But it doesn't actually feel that way at all. It still feels like it goes by in the blink of an eye. Suddenly our boys have tripled their weight, and are growing out of their preemie clothes and diapers and right into regular new born sizes. They're quickly catching up to Lilah's birth weight as they approach a full-term age, and before I know it, they'll be growing out of that stuff and getting even bigger. I really need to sit back and absorb these fleeting days of baby hood. The extra 3 months that we got out of it don't change a thing!
Oh, those cheeks.
Personality: If one thing hasn't changed, it's how goofy Lincoln is! He's still such a character! I wonder if that's just the way his face is sometimes, but when he's asleep he looks peaceful and quiet. When he's awake, he's REALLY awake and googling around with his big beautiful eyes. He plays with his tongue, makes all kinds of facial expressions, bubbles and sweet cooing, sighing and squealing noises.
Pursing his lips.
Other: Luckily, Lincoln has escaped a hernia. Though, they did seem to notice a hydrocele (fluid build up in his scrotum) a few weeks back. He'd had an ultrasound, and they said it's nothing to worry about at this point and that it will likely resolve on it's own. If it didn't, he too would require surgery. Like Nash, he has some nephrocalcinosis and will be watched to ensure that this resolves on it's own, too! He also had his first (and second) bath!! He loved it, too. Can I just say that so far, these babes seem like the most laid back little dudes I have ever met??
Enjoying a little bum freshening.
Jude
Maybe it's just catching up to me, or maybe it's because I haven't been sleeping, but I have been having a really hard time with missing you lately sweet baby. The highs have been getting higher, but the lows are lower. Maybe it's because we are preparing ourselves for your brothers to come home with us, and maybe it's because setting everything up in twos reminds me that everything was supposed to be in threes. Maybe it's because the celebrations are for your two brothers here with us, even though you are heavy in my heart. I held your brothers together the other day, and for a moment I imagined what it would be like to see your head snuggling right there with them. For a split second it was thrilling, and then I started to cry. It's not that I see your brothers as being an incomplete trio, or that something is missing. In fact, I know it's quite the opposite. I know that they are perfect, and complete and whole in and of themselves, because of you. You aren't in sight, but you are forever in heart and in mind. And you are in them. You are their hero, and you are mine. I spoke about you a lot over the last few days, and it seems to bring me peace. People are in awe of your story, and it makes me smile to know that you are leaving an impression on the lives of people you have never met. For a while I started to feel like I was forgetting about you, or that maybe you forgot about me. It was like I hadn't 'felt' you for some time. Then you came to me through music again, and I realized that you'd been doing so all along. I just need to be open to hearing you, and then I promised to keep myself open. Your big sister brings you up in the same breath as her other brothers. Sometimes even when we're talking about Nash and Lincoln, she'll say, "And baby Jude, too!". I know that she's met you, dreamt of you, and that you watch over her. We were making 'snow angels' in the new fluffy carpet we got for Nash and Lincoln's room, and she kept saying, " Like baby Jude!". That's how I know. Thank you, from every molecule of my heart, for everything that you have left us with and for all that you continue to do for your brothers and for all of us. You are perfect, complete and whole in and of yourself. And we are in you. We love you baby Jude.
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