Sandy makes you think

We haven’t written in some time, but after reading about the nicu evacuation at a hospital in New York, we are amazed at how lucky we are. When we were at Mac the power failed for about 30 seconds. For that time Clare and I stood in the dark and wondered what the hell was happening. In our case, excessive power consumption during the heat wave that hit Ontario in July resulted in a brown out. After 30s, the power was restored and many of the rts, nurse practitioners and doctors ran around the unit asking if anybody needed help bagging patients. It was frightening just thinking about the possibility that the power might fail. Later, we found a little bag with a knitted outfit in it. When we asked our nurse that day what it was for, she told us it was Adair’s evac suit. We laughed at the time, mostly because it was so darn cute, but now realize how important that outfit would’ve been in a crisis situation. What our nurse told us that day was that they evacuate the babies in an apparatus that has several pouches. The babies are placed in their slots and carried out and down to an evacuation point. Babies that are vented are bagged all the way down the stairs. When you think of the number of steps involved to keep these little fragile babies alive while they are stationary, imagine what it’s like doing it while walking down 9 flights of stairs. When you think of the amount of coordination and training that has to go into an evacuation, it is mind boggling. Our hearts go out to those parents and families who had to live through that experience and hats off to the health care providers who made sure the little ones got down safely.

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Transition to home!

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yes, it’s blurry, but the squirrels were moving awfully fast. and i was too lazy to get out my tripod

Okay, so Clare has been doing most of the writing over the past few days so I thought that I’d write a quick post.  Our lives have been pretty crazy lately and we seem to be stuck on fast forward.  Luckily, we have some rather amazing people in our lives who have helped us out with food, painting and cleaning our house.  When we left for Hamilton, our house was pretty much in disarray- full nesting mode had just started and seemed to start with dismantling.  So for the past few weeks we’ve been slowly putting things in their right place and cleaning up what we left behind 3ish months ago!  Not an easy task!    Luckily, my foray into professional life has exposed me to some mighty fine September germs which left me housebound this weekend/week and primed for house duties. Between nyquil naps, I’ve managed to conquer the furballs and cluttter thorughout the house.  Just don’t ask to look in our basement. I’m pretty sure that it was ravaged by rabid squirrels or raccoons.  Or perhaps our sad kitties, who demonstrated their sadness by barfing continuously throughout the house or dropping little kitty pooh bombs on the floor in the basement, are to blame.

Despite this, with the help of Ben and Julie, we’ve managed to put together the baby’s room. The wall decal looks mighty fine on the new paint job. And the crib only took me 90 minutes to put together! Please ignore the fact that I’ve put the inside part of the rail on the outside (there’s a little tiny sticker on the bottom rail that you can’t see until you’ve put the whole thing together.  it’ll make you curse a blue streak and decide that it doesn’t really matter because it wouldn’t seem so solid if it wasn’t meant to be put together that way), I’m pretty sure that Adair won’t fall out.

I have to say, I’ve been struggling lately with the transition.  Starting work full-time and trying to get on top of things at home while studying for my licensing exam has been more than a little bit challenging. Welcome to parenthood! The kindness of so many different people has made it easier and helped my neurotic self calm down a little bit and regain some of the ground I felt that I was losing. I feel very lucky that our little guy has received such good care and is coming home to such a wonderful network of friends and family.   I sometimes feel we’re wrapped in a blanket of goodness.  Thank you from the bottom of our hearts!  Swear to god, once the little guy has gotten home and it’s sometime around this time next year, we’ll celebrate with everyone!

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Please don’t think we’re crazy…

Our little baby may be coming home soon. Adair is breast feeding well, so his NG tube has been pulled and we’re on a 48 hour trial to make sure he can eat well on his own steam, and keep gaining weight. As I type this, he’s undergoing his car seat test which is 1.5 hours in a car seat while they monitor his vitals.

So, here are a few things I need to share before we head home. Adair had serious lung disease which means he’s super susceptible to bugs and germs and they can be a real threat to his health. it doesn’t help that he’s going home at the start of cold and flu season. So, we may seem a little crazy and over protective for the next 6 months to a year as we balance protecting his immune system without putting him in a bubble. I get it! Three months ago I was the person that cursed anti-bacterial gels and soaps. Three months ago, I would have secretly questioned if the mom I am now was just a teensy bit paranoid. but three months ago, I didn’t know what I know now, and I hadn’t experienced a super long hospital stay that I’d prefer not to repeat any part of.

So, as much as we’re excited to introduce Adair to the world, we will be laying low this winter. We can’t take him to super-populated areas like the market, the grocery store, derby games, or even Adrienne’s convocation. There will be no visit to Santa this Christmas. We’ll probably restrict visitors but If you come over you will be asked to wash your hands before you touch him, and probably again a few times during your visit. If you or your kids are sick, please don’t come near. If we’re out for a walk, we’ll probably pull the sling over him to protect him from curious hands if someone approaches. We may even post a sign on his stroller. I may ask you if your pertussis booster is up to date. Please don’t be offended.

Yes, you may think we’re crazy, but please keep it to yourself. Trust me. We’ve done the research and we’ve been talked to by all the doctors. We’ll work on building his immune system on the schedule that’s right for him. All we ask is that you respect the decisions we have to make to protect Adair. Thanks for understanding!

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Almost there!

It’s been quite a while sine we’ve posted. When Adrienne went back to work and we started doing more of Adair’s care, it became harder and harder to get posts written. And when we did have a bit of time, we prioritized sleep over writing! Imagine that!

In the meantime, Adair has grown and developed with tremendous success. He’s approximately two weeks before his due date, and we’ve been back in KW at a hospital closer to home for nearly a week. He’s about 7.5 lbs now. Since the last post, Adair successfully transitioned to low-flow, and eventually got off oxygen altogether. While still at McMaster, he moved out of the intensive section and into their level 2 nursery. We waited and waited for news that he could transfer to a home hospital, and here we are! So where do things stand? The last hurdle is for Adair to be able to feed completely on his own steam. His lung disease related to his prematurity causes him to get out of breath very easily, and he has to carefully pace his feeding to give him a chance to catch his breath. He huffs and puffs throughout his feeds, and it takes him an average of an hour to complete most of a feed. That part is okay, but the difficulty is that these feeds seem to wear him out and he sleeps too heavily to eat at all a lot of the time. While most full-term babies will wake when they’re hungry, preemies often don’t and they also often can’t sustain longer periods without eating. So, if he won’t wake up to eat when we need him to, that will cause some problems when he’s home. Right now, we can just tube feed him, but the plan is to get rid of his NG tube and get him doing the work on his own. It takes time and patience! It’s especially hard because all we want to do is get him home, but there’s no rushing this stage. He’ll figure it out on his own time. The only other issue that they’re monitoring is his eye disease, but they can do that with him as an outpatient. Retinopathy of Prematurity (ROP) is caused by the growth of the eye in an oxygenated environment instead of in the womb. Oxygen causes the growth of the vessels to stop and start, resulting in a buildup of tissue that’s similar to scar tissue. In its mild form, this can cause gaps in the baby’s sight, and at its most severe, can cause the retina to detach. Adair’s disease his been quite mild, but they want to monitor it.

Okay, enough of the medical stuff! At 7.5 lbs, he’s a chunky little guy with lots of awesome rolls. I love looking at them because we’ve worked so hard to get him to this size and it’s such a change from his scrawny, nearly translucent body when he was first born. We feel so very fortunate that he’s done so well. There’s so much that could have gone wrong, so many problems that he avoided, and we’re immensely grateful for this!

He’s become quite the little character too! We’re getting to know his personality and all of his many voices. He cries rarely, but he has a range of moans, groans, and grunts that often make us laugh. Most of them are related to farting ( which he does a lot) and pooping ( which he does less often). They add a fortifier to my breast milk and give him an iron supplement so he gets quite gassy and sometimes constipated. Poor guy!

As for us, we’re doing well. Mostly, we are ready for him to come home. It will be so nice to take him for a walk around the block, and to be able to visit with more than just parent+1. Imagine both of us in a room with him and both his grandparents! This is something people take for granted outside a hospital setting, but isn’t part of our current reality. For me, I’m excited to feed without pumping afterwards! Right now, I feed and then pump right away, which can take 1.5 to 2 hours each time. To be able to do away with the pumping will be amazing! And to wake through the night to Adair’s beautiful self instead of my breast pump is something I can’t wait for! We’re so close… just a couple more weeks we hope!

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Flying low and riding high!

Friday was a big day for Adair, at about 1100 the team decided to switch him from high flow medical air to low flow oxygen. The whole air vs oxygen thing has been a bit confusing for us as we didn’t really understand what high flow was until yesterday. The gist is of it is that it was providing pressure support for Adair- he has bronchopulmonary dysplasia which makes it harder for him to expand his lungs- without adding extra oxygen which is good for his eyes. However, most level 2 nurseries aren’t doing high flow air yet as it is relatively new and kinda like cheater cpap. So for a little dude like Adair, who needs pressure support rather than oxygen, it can lead to delays in transfer to a level 2 nursery (Mac has just started to do high flow air in their level 2). So I was a little worried when they made the decision to try him on low flow. However, much to our surprise and delight, he is doing quite well. He might be breathing a bit harder, but he doesn’t seem to bothered by it. Best of all, he seems ready to start oral feeds! He dive bombed the breast tonight and was coordinating his sucking and swallowing. Clare pumps right before he goes on the breast, but he seems to be getting a little milk each time he latches on. Hopefully on Monday Clare will be able to start working with the lactation consultant to get him on the breast and not just suckling an empty-ish boob!

And Our little guy is zooming right along as the nurses predicted. We were told over and over that once he gets off cpap he will put on weight faster than we could imagine and sure enough, that’s what he is doing. Tonight he weighed in at 5 lbs 7 oz!! Unreal! I think that he is going to weigh 6lbs by the end of this week! Right now I’m starting a discharge weight pool- I haven’t figured out the details yet, but if you want in let me know! We don’t have a discharge date, or a transfer date, but they are both close, so watch out! I’ll set up a page when I figure out the pool.

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Bum pirates begone!

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Adair’s bum pirates have been vanquished! Yesterday we got the all clear that all of Adair’s surveillance swabs came back negative. He’s no longer colonized and we’re no longer wearing the always fashionable yellow gowns and teal gloves. It’s like a bad 80s, early 90s outfit that was never really in fashion and oh-so uncomfortable to wear- the sleeves are either too short or baggy and the entire get up was more than a little cumbersome. Best of all, we get to touch him with our bare hands and I think that he is enjoying the change as well. It was lovely, if not confusing, to change his butt without gloves. I know I did a better job of keeping the poop where it should be and managed to not get on my hands. Although, I must confess that I found myself wondering if I should be changing his butt without gloves…he’s putting out some pretty monstrous poops! We gave him a tubby bath (again, no pics) tonight and it was so nice to feel his slippery little body in the water!

The little critter has been moved to a swanky new address across the hall complete with a window and, according to the nurses, a nice sunset view! He’s one step closer to transferring back to k-w and if he starts to figure out this breathing thing, he’ll be packed up in a terrarium and whisked back home in no time (and Clare will get to go along for the ride too, I think). Adair had to go back on hi-flow yesterday as well, but we’re confident that he’ll kick the habit soon enough :) His nurse tonight mentioned that he could be discharged on hi-flow, but I have a feeling he’ll be off it late this week and will stay off of it! We gave him a stern lecture last week about weaning the oxygen and he thumbed his nose and went back on it. So this week we’re trying positive encouragement and ignoring the oxygen entirely. A zen approach to promoting transition and growth. Hmm…that could make for an interesting thesis…

All of this good news has translated into a pair of relaxed parents. Ha! Kinda weird to use that term in a sentence. We were at a BBQ hosted by my cousins last night and my sister asked me what it’s like to be a mom, or something to that effect, and I told her in all honesty, I don’t always think of myself that way because he’s not with us all the time. I think it’ll hit home more once we are out of the hospital. And it’s hard to describe- I think about Adair all of the time and when I’m in Hamilton, I’m a parent going back and forth to the hospital. But outside of this context, it is like I’m a parent in waiting. Regardless, we were both able to enjoy ourselves last night and thankful for a night with family and food! It was much needed and appreciated!

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Hefty little stinker!

Just a quick update. Our little guy is officially in a crib now and seems to be enjoying the freedom. Well, freedom for us in the sense that we don’t have to reach him through port-holes and we can stick our faces right in his gob unencumbered. He’s wrapped up tighter than a drum in a receiving blanket 95% of the time! He does get to hear everything that’s going on now, so maybe he enjoys that. Given that he still sleeps like a log, he doesn’t seem to mind! It was about time that the little dude moved out. Adair has quite the stinky bum. Seriously, I’m not sure how something so tiny can produce a smell so foul. We would open up his incubator and the stench would waft out from the port-holes! Apparently the fortifier they add to his breast milk can make him gassy and that sure seems to be the case. Right now, the beautiful blanket given to us by Auntie Erin’s Grandma has proven to be a perfect place for toots to hide. Instead of opening up a port-hole, we now lift his blanket and are greeted with his offerings!

On the less foul side, he’s grown quite a bit over the past week and weighed 1945 grams two days ago. Tonight I’m hoping that he’s close to the 2kg mark, if not over! His hi-flow was reduced from 4 to 2L yesterday and he had his eyes examined on Monday, so he may not have sprouted the way that I hope, but I’ll cross my fingers! Everyday there’s something new and we’re anticipating that he may make it back to Grand River before October- his bum pirates have just about been eradicated, so it actually seems possible. Must be all that gas ;)

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Clare here, adding on to Adrienne’s above post with a pic of Pickle in his new crib and snuggled in his new blanket.
Another big step is the addition of non- nutritive suckling once daily. Basically he gets what they call “a lick and a sniff,” a chance to explore and smell my nipples without actually latching and drinking. That has to wait until his suck-swallow-breathe reflexes are fully developed. Yesterday was his first try and he seemed a bit unsure. I’m saving today’s attempt for tonight when Adrienne comes home from work so that she see and help position him. I hope it will help soothe him after his bath and it won’t be too much for him.

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