Day 136: Home Sweet Home

Teddy is 136 days old, just shy of three weeks adjusted, and about a week and a half out of the NICU.

Life at home is good, if busy. We of course have many of the same concerns and challenges that all new parents do – multiple late night/early morning wake-ups, a plethora of dirty diapers, concern over whether he’s eating enough, concern over how much he is eating when one takes into account the cost of formula (that stuff is expensive!), etc…

Just a mom and a boy
Just a mom and a boy

There are a handful of extra challenges to having your very own micro-preemie at home, too. One is the multitude of different doctors appointments on the calendar, from his regular pediatrician to the opthamologist, pulmonologist, cardiologist, developmental specialists, etc. Thankfully both Abigail and I have been able to take some time off work to make those happen, and the news thus far has all been positive. Teddy’s ROP remains stable, his lungs remain damaged but clear, he’s growing at a normal rate, and he seems to be meeting appropriate developmental milestones for his adjusted age. We were particularly proud of his ability to roll over repeatedly from stomach to back yesterday during tummy time.

Gettin' swole
Gettin’ swole

Around the house, too, things are a little bit different from your typical baby, as Teddy is tethered to a large oxygen compressor that has to go with him any time he moves around the house. So he basically spends his days in the living room and his nights in his nursery, and not a lot of time anywhere else. We do have a portable oxygen tank for outside excursions, and in addition to his doctors appointments, Teddy’s been on a handful of walks around the neighborhood, which he thoroughly appreciated by sleeping through.

Ready for a walk
Ready for a walk

Teddy also has an oxygen saturation monitor, which, as predicted by the nurses, has become something of the bane of our existence, while at the same time granting us a significant measure of peace of mind. Contradictory enough? The peace of mind comes from knowing that we will be woken abruptly by blaring alarms should our little boy stop breathing. The bane of our existence comes from the fact that the probe (the “sticky” in actuality non-sticky part that wraps around his foot and takes his measurements) comes off ALL THE TIME, leading to false alarm after false alarm, sometimes at 2:14 in the morning.

Well adjusted animals
Getting along with the animals

Aside from those small challenges, though, we are a happy, complete family, thrilled to have our little boy home. The animals have adjusted fairly non-chalantly, which is good. We’re blessed to have Abigail’s mom, Marynell, staying with us, which makes a ton of difference in our lives right now. And we’ve been fortunate to have fun visits from HB’s friend Auntie Cohan from DC, our dear friend Maria from here in Ft. Lauderdale, and Mary Anne and Elena, our NICU primary nurse and her respiratory therapist daughter.

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Visitors!
Visitors!

Thank you for all your support and interest. As has been the case recently, fortunately no news is generally good news – we’re just your typical over-tired parents trying to keep our mini-human fed and happy. So far so good!!

Day 126: HOME!!!!

Teddy came home today! At 18 weeks to the day, he made his grand exit from the NICU, of course wearing a cape like the superhero that he is.

Yesterday, the doctors and NP’s decided that Teddy would definitely go home on oxygen, and possibly as soon as Friday. Abigail went in at 5:30am this morning to see his nighttime primary nurse, Kelly, in case we didn’t have another chance to thank her and say goodbye.

Abigail came home and both of us went to work; Marynell and Glenn went in to do Teddy’s mid-morning feeding. At about 10am, the doctors told Marynell that we should make a pediatrician appointment for Friday – this was really happening!

According to Marynell, everyone in the NICU went nuts, running around to get everything done that needs to get done for discharge – prescriptions written and filled, medical equipment ordered and delivered, car seat “challenge” accomplished with flying colors, hearing screen passed as well, insurance checked and double checked, final orders written, follow-up appointments scheduled…

Abigail and I returned to the NICU around 1pm for “discharge class” – an hour or so of our wonderful Nurse Practitioner Nicole jamming our heads full of last minute directions both obvious and not so.

We rushed home at 2:30 to meet the medical equipment deliveryman, who spent about 30 minutes training us on the use of a nebulizer, portable and non-portable oxygen sources, and an oxygen saturation monitor. NBD, just the machines we need to keep our boy alive outside the NICU!

Then it was just a matter of going back to the NICU to get the boy! With a portable oxygen tank and our sat probe in hand, we were out the door to head back to the hospital, with Marynell offering last minute advice to these very nervous and excited moms as we walked out the door.

It was a little bit surreal buzzing in and scrubbing for the LAST TIME after four months of the same routine over and over and over again. Everyone was all smiles as we walked in, with Elena and Christine, two of our favorite RT’s, joking about stealing Teddy before we could take him home.

Respiratory Therapists/Baby Stealers (note Abigail's photobomb...)
Respiratory Therapists/Baby Stealers (note Abigail’s photobomb…)

We changed Teddy into his going home outfit – a “Little Super Hero” onesie complete with a cape and a “mask” on his hat. More instructions on all his various medications from nurse Debbie, and then it was time to say good bye.

Little Super Hero
Little Super Hero

Elena disconnected him from the wall and attached his portable oxygen tank, and took him for his farewell tour of the NICU. After four months, nearly every staff member on the unit has interacted with him one way or another, so it literally took fifteen minutes or more as every single nurse, respiratory therapist, receptionist, nurse practitioner, etc., on duty today stopped to hug us, marvel at Teddy’s progress, and make us promise to come back and visit.

Our NICU “neighbors” showed up for the six o’clock feeds for their babies, and there were more hugs before Cristi, another of our favorite nurses, suggested we get a picture of our whole “cohort” together – Teddy and his two NICU buddies, out of their cribs together for the first and last time – definitely one of the highlights of the day.

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Teddy, Aria and Logan

I ran to get the car while Elena and Debbie walked Teddy and Abigail out. So far in his life he’s traveled from labor and delivery to the NICU, then two months later to a different spot in the NICU; this was his biggest journey by far, and he pretty much slept through it all.

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Heading home!!!

We did the classic new parent ridiculously slow drive home, and were greeted as we pulled into the driveway by several neighbors eager to see our not-so-little anymore guy. Then it was into the house to meet the animals (uneventful so far) and to finally do what we’ve been waiting for all along – to snuggle up as a family on our own couch.

So that’s where we are now! We couldn’t be more thrilled, though also nervous as heck, but what new parents aren’t?

There are too many people to thank for making today possible, though the one I do want to make special mention of is Mary Ann, our daytime primary nurse who has been with us for so much of this journey. She was off duty today, and it felt really strange to be leaving without her there. She was blowing up our phones all day with texts checking up on everything, and we know it was just about killing her to miss Teddy’s graduation. Mary Ann, thank you for EVERYTHING. We feel so so blessed to know you and to have had our boy in your care for so long.

I asked Abigail this afternoon if we’d keep blogging now that Teddy’s home, and her immediate answer was, “Of course!” I imagine updates may get less frequent as our journey hopefully becomes a bit more mundane. If you’d like to keep following Teddy’s story, though, stayed tuned. I’m sure we have many more adventures in store.

Family
Family

Day 120: Four Months!

Teddy hit the four month mark today – yet another big milestone both in terms of his age and how long we’ve been making the several-times-a-day trek to the hospital to be with him. He’s up to 7 lbs. 14 oz. and looks like a “normal” baby, not even like a preemie anymore. Nurses keep coming over and marveling at how big he is, how well he’s doing, and how “stinking cute” he is. (Stink might be the operative word there – he continues to be a champion farter.)

Belated 17 week Bear with bear pic
Belated 17 week Bear with bear pic

Early this week, Teddy continued to struggle with both eating and breathing. He’d manage three or four bottles in a row, and then be so exhausted that we’d need to gavage a feed or two while he sat comatose on our lap recovering from the exertion. The doctors and NP’s would push him down on his oxygen, and he would desat and get pushed right back up. He wasn’t backsliding exactly, but he wasn’t making progress, either.

A tired Bear
A tired Bear

During most of his time in the NICU, Teddy has been part of a great “neighborhood,” with two other babies who were also 24 weekers and have been physically near him in the NICU for most of the past few months. We parents have become close, and one baby even shares Teddy’s primary nurse. Each baby faces his or her own individual health challenges, but the goal is the same for all three – get off the oxygen, eat all the meals, go home.

This week started with a bit of emotional challenge for us moms, as the other two babies seemed to be outpacing Teddy – going off oxygen, accomplishing more feeds – and one has even been preparing to go home. We are THRILLED for him and his parents, but also incredibly envious, and scared and frustrated for Teddy’s seeming lack of progress. The nurses have been assuring us that all is going well and Teddy will get there in his time, but both of us shed some tears in the unit this week.

Then yesterday rolled around, and Teddy started EATING! He is now on a roll of over 24 hours straight taking full bottles in less than half an hour. Our nurse told us that it would be like this – that one day we’d come in and he’d just be a different baby. And he was!

Look at this guy!
Look at this guy!

By yesterday, he’d been moved to “pedi-flow,” a much simpler form of respiratory support that is just straight oxygen with the amount of support determined by how much flow he gets. And by this morning, his nurse had bumped him down to just 0.1 liters (the lowest setting), and he was still satting in the high 90’s to 100%.

The most exciting news is that today for the first time the doctors used the “h word,” maybe as soon as this coming Monday! Our nurse even said that, given his low respiratory settings, there’s still a chance he might come home off oxygen.

Given his still increasing girth, they’ve approved him for “ad lib” feeds – he still needs to eat every three hours, but it’s up to him how much. If he wants 75mL, great. If he only wants 40, that’s cool too. The big stipulation is that, as he goes to ad lib feeds, he can’t lose weight. Glenn/Granddad commented the other night on how eating has never been a problem for Noonans, so hopefully that will be the case with the newest member of the family.

Ready to eat!
Ready to eat!

We are reminded constantly, though, not to get too excited about going home until he is literally out the door. Heartbreakingly, our neighbor who earlier in the week was anticipating heading home this morning had several bradies over night, and his discharge has been pushed back, perhaps by as much as five days. Hence the superstition around the “h word” in the NICU.

Please keep our boy – and his wonderful neighbors! – in your thoughts. Just don’t use the “h word”! 😉

Shhhhhh... don't say it!
Shhhhhh… don’t say it!

Day 83: Steady On

Day 83: Steady On

Teddy keeps on keeping on, with no significant changes but just steady forward progress. He continues to do well on straight oxygen with few desats. He moved up from one bottle a day to two, and broke the five pound mark last night.

So, all in all not too much to report. In lieu of actual news, here’s the good part – some new pictures of the boy.

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Day 77: Eleven Weeks!

Teddy hit eleven weeks today! Obligatory Bear with bear picture is below…

11weeks
Eleven Weeks!
Oneweek
One week for comparison

Our not-so-little guy is growing at a rapid rate – he packed on 80 grams yesterday alone to tip the scales at 2115 grams, or 4 pounds 10 ounces. As Mary Anne keeps telling us, his weight won’t be the thing keeping him in the NICU. He is apparently still on the small size even for his gestational age, though, so they’re keeping him on the highest calorie formula to keep packing on the pounds. In the meantime, though, it delights his moms that he is outgrowing is preemie clothes and is starting to fit in regular newborn outfits.

Today was a little bit of a rough day, as he had another eye exam, and that always upsets the apple cart a bit for the rest of the day. I imagine I would not have phenomenal vitals after having my eyes clamped open, either. The good news is that his ROP is stable and not progressing. The doctor told Abigail today that there’s a very good chance he will have totally normal central vision, with at worst perhaps some issues with his peripheral vision.

His wean off the CPAP continues to go slowly, so that’s the biggest focus right now. We’re trying to let him be a little bit more and not bother him quite so much, which does seem to help with his oxygen saturation, but stinks for moms who love holding our little guy as much as possible. Hopefully he’ll keep getting better and better with the breathing so we can go back to bugging him with abandon!

Thanks as always for your support!

Day 69: Big Boy, Part 2

Teddy got a big boy bed today! Which is to say, he left behind his isolette/incubator/Giraffe (brand name), and moved up in the world to a regular crib. With most of the functionality – mostly warming and isolation – having been turned off early this week, his isolette had been serving as basically a very expensive plain old crib for a few days now. So it wasn’t a huge transition in practice, but it felt like a huge step! He really is getting to be a big boy!

Big boy bed!
Big boy bed!

In celebration of this momentous step, Teddy graced us with one of his NICU-famous mid-diaper-change projectile poops this afternoon. He’s done this a few times before, but this time with no back wall on an isolette to contain things, he truly outdid himself, splattering the floor several feet away from his crib. This mom was rather mortified; thankfully the nurses took it all with good humor. The boy can poop!

Teddy continues to get cuter and sweeter by the day. I caught him with his whole hand is his mouth just before dinner time, which is apparently a great sign for his developmental progress. I got to spend a bunch of time with him very awake tonight, wide-eyed and just taking everything in, sucking away on his binkie, and flashing a killer (accidental, but still!) smile every now and again.

In other news, Mary Anne and Elena (one of the respiratory therapists on the floor who also happens to be Mary Anne’s daughter!) brought Teddy back a gift from their trip to Washington: a “Future Member of Congress” onesie from the Capitol building. I know nothing of Teddy’s political ambitions, but Mary Anne seemed tickled to learn that Teddy’s uncle in fact might be an ACTUAL future Congressman. (Good luck with your debate tonight, Uncle Sean!)

Teddyforcongrees
Still not quite big enough for newborn onesies, but excited about the sentiment!

Day 64: Nine Weeks (Belatedly!)

Sorry for the lack of posts lately – as Abigail noted a few posts back, no news is good news from us right now. We’re mostly just really tired and busy, and Teddy is in a nice place but not changing so much day to day, so there’s not a whole lot to report.

He did turn nine weeks yesterday, so obligatory Bear picture is below – not his best, but it does show off one of the awesome new outfits he got from his  Grandma Barney, who even cut the feet out and hemmed the legs so his leads would work with the onesie.

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Our boy continues to do well with CPAP, swaddling and bolus feeds every three hours.

Every now and then he has a scary-for-moms episode where mucus builds up into a “plug” that can block most of his airway and cause bad bradying and desatting. It’s unnerving to say the least to watch his stats plummet and his hue turn blue, but a good suctioning of his nose and throat from the remarkably calm respiratory therapists and nurses gets the plug out and then he’s right back to normal. So far this happens every other day or so.

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His last eye exam showed no further progress of the ROP, which was good news. He hasn’t been gaining a ton of weight in the past few days, but he’s very stable and generally seems like a pretty content guy most of the time. He sleeps very peacefully, and then fusses a bit when we wake him up for diaper changes and feeds. He’s getting better and better at expressing himself vocally, which is still new enough to be exciting and adorable to his moms.

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Thanks to Julie for her guest post and for visiting last weekend! Abigail is looking forward to seeing her friend Andrea this weekend while I’m out of town with my team at a regatta in New Jersey. And thanks to all of you for reading and thinking of us.

Day 60: CPAP!

Teddy took another positive respiratory step yesterday, moving from NIV NAVA to CPAP. The main difference is that he no longer has his Edi catheter in, which used to monitor his diaphragm and provide extra support for the breath that he’s trying to take. CPAP is less supportive, providing constant positive airway pressure to keep his lungs open, but not extra support. Teddy is essentially doing all the breathing himself.

The other main difference is the machine itself, which I can’t stop staring at. Teddy is on something called “bubble CPAP,” which means that there’s a container of water next to his bed that literally constantly bubbles. It kind of looks and sounds like a chemistry experiment or something out of a mad scientists’ laboratory.

Sleepy burrito baby
Sleepy burrito baby

Other than that, Teddy is in a really nice spot. He’s getting better and better at maintaining his body temperature, so he spends most of his time as a swaddled burrito baby, which is pretty darn adorable and he seems to really like a lot. It also means we get to spend a lot more time holding him, which is pretty awesome for moms.

Happy mom holding the Bear
Happy mom holding the Bear

He is up to full feeds every three hours, and tipped the scale most recently at 1490 grams, or 3 pounds, 5 ounces. He hasn’t gained as much weight this week as the doctors would have liked, so he’s up to 27 calorie formula (woah, big eater!) and hopefully will get back to packing on the pounds soon.

His follow up eye exam went well – he still shows early signs of ROP, but it has not progressed, which the opthamologist said was the best possible news for him on that front.

The only other big news is that Mary Ann, our current main nurse, has been on a surprise trip to DC. (We’re not envious AT ALL.) Thanks to our many friends who helped make her feel especially welcome and special – it sounds like she’s having a great trip, thanks in part to you guys. Thank you!

Day 54: Ch-ch-ch-changes

Abigail and I overlapped in the NICU this afternoon – not that common of an occurence – and she stepped out for a cup of coffee and to talk with the social worker around 2:50, thinking she had plenty of time before 4pm hands-on. Next thing I knew, Mary Anne was asking me to take Teddy’s temperature and “change his britches” so we could feed him. In technical terms, he’s gone from hands-on “Q4” (every four hours) to “Q3.” So 4pm hands-on is now 3pm hands-on, as a disappointed Abigail discovered when she got back!

The increase in hands-on frequency is being driven by a change from continuous feeds – basically a non-stop slow drip of formula into Teddy’s oral-gastric tube all hours of the day – to “bolus feeds,” or a larger volume delivered all at once every few hours. In other words a forward step towards eating like all the rest of us do!

His nurse and I noted how strange that must feel, to experience an empty stomach and a full stomach for the first time in your life. He definitely shows a little more typical newborn behavior (or the behavior that any of us have, really), getting a bit fussy as his stomach emptied out, and then going into a bit of a food coma when it was full.

The other big change today is that we started swaddling him, requiring him to do more of the work of maintaining his body temperature rather than relying on his isolette to do all the work for him. He seemed pretty content all bundled up, and looked darned cute, too.

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Awake and hungry!
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Full and passed out.

Other than that, he continues to do well today with that whole breathing thing. He had a little bit of a scary (for mommies) moment last night when a mucus “plug” formed, blocking much of his airway temporarily and sending him bradying like crazy. One of his wonderful respiratory therapists was able to suction the plug out, though, and he was back to perfect vitals immediately. Another one of those hazards of preemie life!

Yesterday was his first Easter, which the nurses mark (like all holidays) with a little arts and crafts project featuring his hand and foot prints. They were nice enough to make two – one for mommies and one for Grandma and Grandpa, who’ve been visiting this week.

Happy Easter from Teddy and the NICU staff!
Happy Easter from Teddy and the NICU staff!

Day 51: Extubated!

Teddy was extubated today!!!!

I’ll let the text conversation I had with Abigail tell the story, since she gave me a pretty good play-by-play while I was at work. (Picture me attempting to have a professional conversation with my assistant while my phone was blowing up and you’ve got the full picture from my side of the phone!)

 

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As you can probably tell, we are very excited today!

Post-extubation, Teddy has continued to do pretty well. He is admittedly not entirely pleased with the situation – I suppose that after seven weeks of knowing nothing BUT an ET tube, it could feel pretty strange to have that gone and instead have prongs up your nose. Also he now has to do a lot more work – sorry kiddo, standards have been raised!

He spent about thirty minutes completely bereft this afternoon, “howling” as much as he’s able to cry right now, which is to say that he makes noises roughly like a very small kitten. Even while pitching his worst fit, though, he continues to maintain his vitals like a champ.

I sat with him through all that singing lullabies and resting my hand on his chest until he finally settled down, and Abigail’s latest texts inform me that he is “Doing really well! Sleeping!”

So that’s our big news for today. More pictures to come soon… he is very drooly right now, and Abigail says she wants to clean him up a little before showing off his beautiful face to the world.

Thanks for all your good thoughts – keep sending love and breathing vibes our way!