Breathing – a good skill to have
Somehow in our transition from Children's back to BI we forgot to post that Nathan is no longer on any form of breathing support. (You may have noticed from the pictures…) Nathan's been letting us know for a while that he didn’t feel a need for the nasal cannula (again, reference the pictures - notice the one where he's pulling it out?) and his first day at BI the nurses agreed and it came off. He's been at it for a week now and he's doing a great job breathing on his own and keeping well oxygenated. Now he’s just got to learn to breathe and eat…
Family Portrait
We finally have a family picture. If I knew how to put photos in blog posts this is where you'd find it. Since I don't, you'll have to head over to the gallery to see it.
Back to work
This past weekend I was informed by some of our readers that we aren’t blogging enough for their liking. Apparently this blog ranks high on the list of procrastination and lunch break activities, and having to read the same entry for a week straight just doesn’t cut it.
This past weekend also marked the end of my first week back working. In order to keep the remaining weeks of my maternity leave for when Nathan comes home, I’m working half time between now and then, splitting my time between home and the office. That first week was…. a challenge. I’ve worked from home before pretty successfully and just had no idea how much coming home from visiting your baby at the hospital throws a wrench in your plans for an afternoon of productive office work in the comfort of your own baby clutter filled living room. The few hours of work I had planned each day stretch to fill many more hours than necessary.
Tim’s been back at work for a while. He went back to teaching as soon as Nathan started getting better, and regrouped with his own clients shortly there after and has been working long hours for the past month or so to get everyone’s project done on time. He’s so used to doing his work on the go, in whatever setting is available (and his home office isn’t in the living room unless he wants a change of scenery from the studio) that the work from home thing is a whole lot easier for him.
But this week I got smart. Beth Israel is just a few (okay, maybe a few more than a few) blocks down Comm Ave from my office, so yesterday after hanging out with Nathan all morning I drove over to the office, figuring if I found a parking space I’d spend a few hours there before heading home. Both Boston parking meters and my industrial blue pump made sure that I could only be in the office for two hours, but it still made such a difference! So that is my new plan until Nathan comes home – drive down the street, pray for a parking space, get a few hours in at the office before heading home. And who knows, maybe just circling Newbury and Clarendon will get me into work mode even if I don’t find parking. It’s worth a shot.
Nathan has a swallow study over at Children’s this afternoon. We haven’t asked for details of how the study is actually done, but there is some irony in asking a kid who is just learning to suck and swallow to take down various liquids so his swallowing ability and technique can be observed. I half expect Nathan just sit up and to tell them he doesn’t do that yet. But we’ll see how it goes. We should have the results right away, so during one of this evening’s pumping sessions we’ll (I’ll) post an update on the study.
(Wait, you hadn’t yet realized that all blog posts get written while pumping? Well now you know.)
Parenting Lesson #1 – don't make promises
Oh man, I never should have promised an update. You’d think after 37 weeks of this I’d learn that any pumping done after 8pm is done while half (fully) asleep and thus not a great time for blog updates. Oh well – here we go. (there is no way this is going to be short and concise or terribly well composed...)
So on Saturday I neglected to gush over Nathan breastfeeding really well and taking 40cc in just 10 minutes before tiring out. It was amazing! (How do we know it was 40cc? Magic of the NICU. And actually, it was probably a bit more.) So that was a great success. He’s also been working on bottle feeding two times a day for the past week and has been taking at least 20cc pretty consistently. (He gets 50cc / feed 8 times a day.) But there have been feeding setbacks too. He’s still dropping his heart rate pretty often while eating. And on Friday night we learned that Nathan’s left vocal cord is paralyzed.
I think we have to back up a bit more. Nathan’s voice has been hoarse since he came off the breathing tube back at Children’s Hospital. 3 weeks and change with a tube hanging out between your vocal cords will do that. When he transferred back to BI all the nurses remembered his hair and loud cry. Except that the cry wasn’t so loud any more, so they paid attention to it. We were told the cause of the hoarseness might not be the breathing tube, but his PDA ligation. Apparently the PDA is right next to nerves that control the vocal cords and these nerves can get disrupted during the surgery and the cord can become temporarily paralyzed. The plan was to keep an ear on his voice and if he was still hoarse when it got close to discharge time, have the Ear Nose & Throat guys take a look and see if paralysis was the issue. When he began having an increase in dropped heart rate spells while eating, Nathan’s docs decided to get his throat looked at sooner, since the vocal cords are the last line of defense in keep food out of the airway and anything going down the wrong pipe could cause the heart rate drops.
And that’s how we learned about the vocal cord paralysis. This knowledge and the continued spells are what lead to today’s swallow study. Which was actually really interesting and very informative and only took about an hour including travel time. (Which is pretty amazing since the ambulance ride around the corner to Children’s takes 15 minutes when you don’t get stuck at the Longwood Ave light.) For the study, they had Nathan drink different thicknesses of barium and watched how he sucked and swallowed and where the liquid went.
We confirmed that the wide base Playtex nipple is the best choice for Nathan so that he can get a good latch. We learned that while milk (or in this case, barium) is not going into Nathan’s lungs, a very small amount does sometimes enter his windpipe which he than has to bring back out. Not so much fun for a little guy still learning to eat. And we discovered that the thicker barium really worked in keeping fluid flowing down the right pipe.
So why’s this all going on? Could be immaturity, could be the vocal cord paralysis, could be a combination of both. So what’s the plan? (Do you remember there was a time when we stopped making plans for Nathan and just had goals and hopes with his care? Plans are so great.) Turns out that just like you can add calories to breast milk, you can thicken it too, so the plan is for Nathan to get calorie fortified (we’ve talked about that, right? this doesn’t mean mama gets to eat extra dessert…) thickened milk. Just like I can’t add in the extra calories, I can’t all of a sudden produce thicker milk, so Nathan’s team back at BI will have to talk and decide where breastfeeding fits in to this new plan. We’ll find out tomorrow. I really hope we don’t have to give it up!
Be Alert
The world needs more Lerts.
Be A Lert from Katie Vogele-Bongiovanni on Vimeo.
(March25th)
Lookin Around from Katie Vogele-Bongiovanni on Vimeo.
(March 31st)
Fun Fact:
At 37 weeks (adjusted age) Nathan weighs 7lbs 8oz. At 37 weeks (birth) his mama weighed 7lbs 3oz.
Go check out new pictures of our growing baby.
Holy Week in the NICU
As we make our way to end of April, there’s been a recurring refrain – when is Nathan coming home?
When Nathan was born we were told to expect him home around his due date – April 29th – and so we looked at each other and said, it’s going to be interesting Lent. I guess when two churchy people have a preemie right before the church’s most important season of disciplined waiting and preparing begins, the new life of hospital visits and waiting for your baby to come home feels very much like a Lenten discipline. With Nathan’s incredible first weeks of life we thought it really would be just weeks of waiting, and so we prepared ourselves for a long wait.
Then Nathan got sick and we were no longer “just waiting” – we were waiting and praying and terrified. Nathan began getting better a few days before Ash Wednesday. After living at the hospital for a week and feeling completely disconnected for the outside world, one of our first ventures outside of the hospital was to go to an Ash Wednesday service. But by then our lives were no longer in sinc with the life of the church. It was a beautiful service, but as we left the church I could not believe we were walking into the start of Lent. It felt like we’d already had our Lent, we’d already had our Garden of Gethsemane, and with the miraculous reduction of Nathan’s clot and clearing of his infection, we’d had our Easter. Strange that the rest of the church was just getting started on this journey.
And so here we are, Monday of Holy Week. Yesterday we entered Jerusalem with Jesus in triumph and celebration. But now the week gets harder as we make our way to the Cross. And even though we know the end of the story, as we wait for Resurrection we have to go through the suffering.
And I think our journey through the church year and our journey with Nathan are in sinc again. We know the end of the story – no one has any question that Nathan will be coming home to us soon. And we've had a lot to celebrate in the past few weeks. And I still believe we got our Good Friday and Easter last month. But we have to wait and walk through this final week or two or three or four in the hospital.
So what’s left to do? Nathan still only has the stamina for 3 bottles a day – he needs to take 8. We’ve had to take a break from breastfeeding so that we can give him thickened milk to help him develop his swallowing skills. The plan is to slowly introduce breastfeeding back in to his feeding routine, but we don’t know when. He’s still having a few spells a day where he drops his heart rate for no clear reason and he needs to outgrow these. We’ve been warned that these spells can be the final thing that delay a baby going home.
So that’s what we’re waiting for. Happy Holy Week.
News from Nathan
Happy Easter week! Nathan’s first Easter was a lovely day. We had church in town hall (we kinda outgrow our building for the big holidays…), a super yummy brunch with the Mom, Dad and Grandma (Parrish, Vogele, Booth) and then a long visit with Nathan. He even stayed awake to say hi to his grandma and grandpa and great grandma! We forgot to open Nathan’s Easter basket from MamaTort before everyone left, but he still looked cute falling asleep next to it. (new photos, including our easter family portrait, over in the gallery)
So, I’m sure you’re wondering what’s new these days. Two weeks ago Nathan had a swallow study, the result of which was to put him on thickened milk to prevent aspirating and to stop breastfeeding for a while. Disappointing to not be breastfeeding, but the thickened milk made a huge difference – no more heart rate dips with eating and he could finish a whole bottle – yay! Then Nathan’s bilirubin level (that stuff that makes babies yellow) stopped decreasing and then started increasing. UGH. So last week his team got together and said WHAT is going ON? They checked his liver function, platelets, and hematocrit, took a blood culture and did a liver ultrasound. And other than looking more like an oompa loompa than he did the week before, everything was fine. The only change they could find in his care was the addition of the thickener in his milk.
So last Thursday it was decided to stop using the thickener just to make sure it wasn’t the culprit. This meant taking Nathan off of bottle feeding since we're not sure he's ready for unthickened milk. So we’ve been back to 8 feeding tube feedings a day. Boo. Labs were taken again today to see if there’d been any change. Bilirubin's down, but only a little, so Gastroenterology will have tests run tomorrow (or maybe the already did this afternoon). In any event, Nathan will not be going back on the “Simply Thick” thickener. He’ll have a swallow study on Thursday to see if he still needs thickener at all, and if so, they’ll use a different one. Until then, still no bottle.
While it’s a nuisance, and this delay in eating and especially in breastfeeding is really disappointing, the elevated bilirubin level is not harmful to Nathan – it’s simply an indicator that something else could be going on. And that something else could be the infection that Nathan used to have and we’re simply still seeing how it effected his body. So we could be bringing home a yellow baby, but even if time is the only solution, the level will eventually come down.
That’s the news.
Giving Shots and Back to Bottles
Hello dear readers. It's been a long while since I've blogged about
our many unusual adventures in parenting. I've been pretty swamped
with work for the last month and a half. The spring is a busy time for
me anyway, so when Nathan decided to show up early, it toppled my very
carefully balanced schedule.
I'm happy to say that I'm finally caught up and not so stressed out
about work any more. Thus I thought I should write a blog post with
this spare few minutes.
As I write this, mom and Nathan are napping in the chair next to me in
the NICU at Beth Israel. Earlier today, Nathan had his second swallow
study at Children's Hospital. Unfortunately, the study showed that
he's still aspirating (taking food down the wrong pipe) when he tries
to swallow milk of a standard thickness. The good news is that the
the doctors have determined that the thickener that was allowing him
to eat by mouth was not the cause of his elevated bilirubin levels, so
tonight we gave him his first bottle after a week long break. Somehow
he knew, because he was totally psyched. (Video of Nathan trying to eat everything in sight to follow.) He finished the whole bottle in about 15 minutes, and was looking for more. After a couple of good burps he was off to sleep.
Earlier this week I got to experience something completely new. Its a
pretty regular occurrence for Nathan to get a shot, but I've never in
my life had to give one. Katie and I new this was coming. We were
informed that Nathan would need to go home on blood thinners - and
that we would have to give him a shot twice a day - about a month ago.
At that point my biggest question was: how do I practice giving a
shot? Surely they don't teach people to give shots by just showing
them what to do and let them start stabbing at people. In my head I
pictured something that looked like one of those CPR dolls that was
used for this sort of thing. The doctors said they thought that
giving shots was practiced on a piece of fruit or something like that.
Later on, Katie was taken through a lesson using a rubber glove
stuffed with cotton balls. Katie says it was really good for
practicing keeping the needle steady post poke.
On Tuesday we got a visit from very nice nurse practitioner from
Children's, for shot training. To my relief she produced a small
rubber pin cushion looking item for us to learn on. After a little bit
of time with that, it was time for one of us to do the deed for real.
I volunteered to go first.
The trick of all this is that it's possible to do it wrong. Its not
just poke and plunge. If the needle goes too shallow, then he won't
get drug in his system. Too deep, and we might hit muscle and really
hurt him. We had to be shown how to pinch just the skin and put the
needle in at a good angle.
The worst part of it was right before I put the needle in. I stood
there pinching his skin the way they showed us.
I have to say that, despite the fact that he's in a little bit of
pain, Nathan's reactions to things of this nature are hopelessly cute.
He usually doesn't respond to the prick right away and he rarely
cries. His expression changes to a look of utter bewilderment. Like
someone just cut him off on the highway from four lanes away. Sort of
a "wait ,WHAT'RE YOU DOIN'!?" All the while vigorously sucking on his
pacifier. He's a good boy. He doesn't even make his parents feel too
badly for having to give him a shot.
Happy Due Date!
Friday April 29, 2011 - the day we were told to expect baby to show up.
They say the hardest day of pregnancy is the day after your due date, when you're still pregnant. Passing your due date in the NICU isn’t much fun either. But today we’re just excited that Nathan is 40weeks, full term, and that he’s healthy and here with us. Now we just have to keep working on the skills needed to come home.
ps. Yes, I do realize there was also a big wedding today, and I was in fact up at the appropriate ungodly hour and could have watched it, but I thought pumping for my son and going back to sleep was a better idea. I was tempted to call my friend and be the first to wish her a happy 30th birthday, but I restrained myself – I don’t think anyone wants birthday calls in the wee hours of the morning.
Happy Due Date! Part II
It seems that Nathan was just as excited about today as mommy and daddy were. He was more awake than we've ever seen him. He decided to celebrate by taking a full bottle at two consecutive feedings (and no spells!), we gave him some tummy time (he wasn't so sure about that), and we read two books. He barely even cried when we had to bug him for things like diaper changes and temperature taking. His blood work came back and his bilirubin levels are going down, and his liver seems to be relaxing a bit. The only bad part about the whole day was that mommy and daddy had to leave to go to work. It was especially hard today because he was wide awake and curiously looking around as we left. I think he made us both late.
Celebrating in Style
Wide awake to enjoy his Due Date.
Happy Due Date! from Katie Vogele-Bongiovanni on Vimeo.