This also means, however, that things have been a certain kind of 'boring' as of late and haven't required an urgent update of any kind. Not too much to write about (aside from how cute our kids are). And no other family in the whole entire world could be so thankful.
Some fun family news...we bought a minivan!! We are so excited to make the switch and get familiar with our new vehicle before we stick our boys in it :) We also picked up their cribs and so begins our nursery decorating...finally. Until a couple of weeks ago, their nursery was filled with junk from the move, waiting to be organized. Then it sat empty for quite some time until we started getting our hands on some hand-me-down toys and clothing for our little rascals. But now that we've got their cribs, the fun part begins! I've been dream building for their nursery for quite some time, and I can't wait to finally make it a reality. I can't believe our boys will be coming home soon...
...and by soon, I mean it's still a few or more weeks away! They have been doing so well in the NICU, but still have some ways to go. They're putting on weight beautifully, and practicing really well at the breast, but in order for them to come home they need to be breathing completely on their own, taking all their feeds orally (they're still getting almost all of their feed through a tube), and have no alarms for 5-7 days. I believe there are a few tests they have to pass as well before being discharged.
Thankfully our boys have been spending most of their time eating and growing, leaving little time to get themselves into too much trouble!
(OH MY WORD...I'm going back through this post to add photos and it's almost impossible. There are so many I have no idea where to start. I think I may have to just skip quite a bit of the last 4 weeks and start from the most recent ones. Here it goes...)
Nash
Breathing: It's hard for me to believe that the last time I updated, Nash was still back and forth between the CPAP and SiPAP. He has since been taken off the CPAP and put on the nasal cannula which is the last step before breathing entirely on his own. Much like the CPAP, the nasal cannula delivers room air (or oxygen if it's required) at a certain flow to assist the lungs in staying inflated, though much lower than a CPAP (i.e. a half litre VS 4 litres). One of the things I've loved most about the nasal cannula so far is that we finally got to see Nash's beautiful little face. He looks so much like Lilah at certain angles, it's scary. After a few days of oogling from all his nurses for being so handsome, Nash needed to go back on CPAP to get a little break. There he stayed for another week, until they tried him on nasal prongs again. He did well for most of the day, but then by the next evening he was having a rotten time breathing. I noticed as soon as I got there that something wasn't right. He wasn't himself, even more quiet and still than usual. And when I held him, I noticed he was working really hard to breath. It was really noisy and the skin around his rib cage sucked in every time he tried to catch some air. I brought it up with his night nurse and then Nash's doctor and the respiratory team came around. He's sort of on the verge of being too old for CPAP, so they tried him on a high flow nasal cannula instead. That wasn't working well for him, and so it was back to CPAP after about a day and a half on nasal prongs. He sure gave it a good shot! I have an inkling though, that the cause of his breathing issues that day was a giant, dried up boogie taking residence inside his nostril. They suctioned him out and we all were shocked at the size of it. I think that if he'd been trying to breath all day with that thing stuck up his nose, of course he'd be exhausted and having a hard time trying to keep up with the demand. He is so much happier on CPAP, and that makes his mama happy, too. He's been much happier on CPAP since that day. *Update: Things change quickly in the NICU! Since adding to this post yesterday, they have taken Nash off of CPAP and he's now on high flow nasal cannula and doing awesome!
Feeding: Since being put back on CPAP, they've had to cut down on his therapeutic tasting. So instead of getting a few mL of breast milk through an open bottle nipple during a tube feed, they're back to giving him drops of milk on a soother instead. It's just too much to handle CPAP and sucking/swallowing/breathing all at the same time. We still get to nuzzle on an empty breast though, and Nash does fantastic job of it when he's interested! When he's awake, he is EXTRA eager and excited. It's so cute to watch him flail his arms and root with his mouth wide open and his tongue poking around and licking drops of expressed breast milk. Other times he'd rather just fall asleep as soon as I get him skin to skin. I understand. I'm his momma.
Seeing: So far, Nash's eyes are developing perfectly with no complications from prematurity! He has an eye exam once every two weeks in the NICU to keep a close watch on anything that might be brewing. He still doesn't open them nearly as much as Lincoln, and when he does, he's not quite as 'bright-eyed' as Lincoln is, either. He kind of squints and looks around and closes them again. Of course there has been the exception when he seems wide awake! I sometimes wonder if it's the CPAP that makes his eyes swollen shut, and that's why he doesn't have his eyes open as much as Lincoln.
Weight: As of March 19th, Nash weighs 4lbs10oz!! WOW. I am blown away by how fast he is growing. You can literally see the difference from day to day, it's incredible.
Bathrooming: All goes well in this department! He's suffering from a bit of a diaper rash, but in his creases. Poor little guy was bleeding a bit, but they've got a handle on it with loads of zinc cream and extra tender care when cleaning.
Kangarooing: I just love our new routine of beginning our skin to skin time with nuzzling (practice breast feeding) and then spending the rest of the time with a nice warm sleepy snuggle on my chest. It's amazing how quickly their breathing, heart rate and oxygen saturation levels stabilize when we're kangarooing together. It's magical.
Personality: Nash still smiles A LOT. He's still a pretty laid back kind of guy. The only time I've heard him make a fuss about anything was when they were switching out his nasal cannula and ripping the tape off of his skin. It was pretty awful actually, and I would have been so upset had he not desperately needed some breathing assistance. The tape was so fresh from the morning before that it tore a little piece of his skin off on one side, and it was attached to a bit of his hair on the other side. So my poor little guy let out a big screech and wailed for a few seconds. It was short-lived, thankfully, but still heart wrenching. I'm glad I was there to stroke his little head and speak to him softly to tell him everything would be ok. He seems to really love it when I grab his hand or hold his head, or speak to him softly. He stops wriggling and just listens and absorbs. He's a mama's boy :)
Other: So this will hopefully be the end of the CPAP saga as Nash will now be too old to get back on it after he goes off again! He had a huge weight gain a few nights ago, 122g, and seemed a little swollen, all of which can be related to the CPAP. Some nurses take their weight including CPAP. Others will subtract the weight of it from the total. And because of the tight CPAP hat and ties, fluid pools in their little face and just puffs them up a tonne. It's also hard to say what's really happening from day to day. It's easier to track a trend over a period of a few days or a week.
Lincoln
Breathing: Since my last update, Lincoln had also gone back on CPAP after a rough day/night of desats and bradys. He spent another week on it, and then went back to nasal prongs with a little oxygen, then just a higher flow, and then down to the 1/2 litre flow on room air and hasn't looked back since! Actually a couple mornings ago...they TOOK HIM OFF NASAL PRONGS!! AHH! He was doing awesome, then the next hurdle was to see how he does during his next feed and whether his body will be able to handle everything on it's own. And he rocked that, too. In fact he rocked it so well that he took 10mL from a bottle and has been taking 6-10mL from a bottle at every feed, except for the times when we're nuzzling, because we can't tell how much milk he's getting from the breast! He is breathing tube free and looking gorgeous!
Feeding: Lincoln has been eating like a champ! He usually does great with his therapeutic tasting during tube feeds, and now taking up to 10mL in an open nipple. Yesterday and today while we were nuzzling, he did something amazing. He latched on and sucked like he has been for a while, but instead of popping off when he needed to take a break and reorganize himself, he stayed on and breathed for a bit, and then went back to sucking! He doesn't seem as enthusiastic as Nash does when he's practice breast feeding, but I think it's just because Lincoln is a little more familiar with what he's doing, where as Nash is still sort of figuring things out and gets excited about these drops of milk. I'm really hoping that my 'one' practice breast feeding session a day is enough to ward off a preference for the bottle. So far he seems to love nursing, and I would really like to keep it that way, though I am so open to him being able to bottle as well.
Seeing: At his first eye exam, Lincoln was diagnosed with ROP - Stage 1, Zone 2. Retinopathy of prematurity is a disorder of the blood vessels in the retina. Pre-term infants eyes haven't finished developing yet, and because they are developing in the outside world they are very sensitive to changes in oxygen saturation. If they have too much, or too little oxygen, the blood vessels in the retina can temporarily stop growing and become damaged. When they start growing again, the blood vessels can sometimes continue to grow normally, but other times they can grow in a disorganized fashion and out into the centre of the eye. Stages 4 and 5 generally lead to significant vision loss and blindness, where as the stage he's at may leave no lasting effect and may even reverse. He has an eye exam every week to follow up on any progression of the disorder, and so far it hasn't gotten any worse! We are very thankful for this, and hope that it continues to stay the same or get better. He sure would look cute in a pair of baby glasses....
Weight: I hope you're sitting down for this...because Lincoln is now 5 pounds!!! Sheesh they really know how to make babies fat in the NICU. I wish I could say my breast milk was the reason for all of their amazing weight gain, but they are still being supplemented with human milk fortifier which is helping them to pack on the pounds. As of March 19th, Lincoln weighed 5lbs0oz. Again...wow.
Bathrooming: All is well here, too! Though Lincoln is also dealing with a super sore bum. It's awful to see such small bums with such bad rashes. Lilah has had almost no diaper rash in her entire life. I think she sort of had the beginning of one...once or twice. But in general we've had no issues with her an diapering at all. I'm hoping that the rashes aren't an ongoing thing for the boys, and that once they're home we can keep closer tabs on their diapering and cleaning (not to say that the NICU isn't doing a fantastic job). I'm cutting down on dairy in my diet to see if that might help to ease the rash, but I'm pretty sure it has something to do with the HMF they're using to supplement my breast milk. That formula stuff, though necessary, can be nasty on their bums and digestive systems.
Kangarooing: It has been so wonderful to have skin to skin time with Lincoln (and Nash too, of course) because without the CPAP, you can hear them breath. It's the most beautiful sound.
Personality: This little guy is still just as goofy as ever. He's awake often, and when he is, he is just all eyeballs and facial expression. It's hilarious! Tonight he was nursing, stopped dead in his tracks as his eyes opened WIDE and he slowly turned his head outward, as if he'd just gotten an incredible idea or thought of something amazing. I laughed so hard. He also made some pretty incredible noises tonight, I'm not sure if being off breathing assistance is part of that. But he was blowing bubbles and even made a coo after a sneeze. All just melting my heart!
Other: This little tubster is totally filling out. From his cheeks to his thighs, you can really tell he's growing. He's only 1cm taller than Nash (really?? He looks much taller in this picture below) and weighs about a 1/2 pound more. A couple of weeks ago, Lincoln went through this weird episode of not being able to keep his own body temperature up. They had to bring back his bed warmer, and bundle him up with layers of blankets and stick a hat on him. The worry was that he was developing an infection which was causing his temperature to drop while his body focused on the infection (instead of rise, like it would in someone with a mature immune system). A few days later, he was on the mend with no explanation to what had happened. It could have also been that he was just taken off of CPAP, and his body started focusing on getting enough oxygen and forgot to keep itself warm at the same time. Maybe it was a reality check for us, to make sure we weren't taking their health and their so far uneventful NICU stay for granted. We sure aren't.
Jude
We are so thankful for your presence and for the guidance you've given us every day since your passing. Your brothers are growing on such an amazing path, and I just know that you are helping them to find the way. I think of you every single day, and wonder what it would be like, and wish so badly to have you here with us. The necklace I bought in honour of you is absolutely perfect. Lilah thinks that it's beatuiful too, and she likes to touch it and calls it my 'Baby Jude Necklace'. It rings so gently far more often than I thought it would. It's a sweet, quiet jingle that you don't quite notice unless you're listening for it. Some mamas feel their angel baby's presence in symbols around them - like rays of sunshine, butterflies, blowing leaves. I've found that I feel you most when I hear beautiful sounds or music. I think to myself that you must hear it too, and that you love it just as much as I do. I wear your necklace as often as I can, and this will sound so strange, but some days it feels so heavy that I can't bring myself to put it on. I'm not sure yet what this means or how it relates to my grief, but I know that when I can't wear your necklace, you show your presence by comforting me and reminding me that it's ok to feel this way sometimes. That it's ok to acknowledge all of these feelings as they come. I love you so much baby Jude. I know that you are here with us every step of the way.
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