Day 112 : 16 weeks yesterday

Teddy’s due date was on Monday! He should now officially be here, it’s a huge milestone. In fact they start counting his age differently in the NICU now. Until now they’ve counted his actual age the way we do on this blog, by days, but also by his gestational age- so what we would be saying if he were still in the womb. So on Sunday he was 39 weeks and 6 days. As of Monday however we start counting his “actual” or “adjusted” age. We will continue to use this “adjusted” age as our benchmark for his developmental goals. So, generally speaking, we’re looking for Teddy to be hitting normal milestones for a newborn and a 1 month old in the next month. Of course, he HAS had some more practice in many things than most newborns. He loves staring at and tracking his mobile,  he looks at people in the face and is likely starting to see more colors than the newborn’s black and red. He’s been doing tummy time for the past month. I’m proud to say that my “1 day old” actually rolled over on his own on Tuesday, from stomach to back.

2016-05-22 15.28.50 2016-05-24 08.29.20

2 day olds smile right?
2 day olds smile right?

I’m not going to try to be eloquent here (not, that I’ve achieved that in the past), but rather fit in as many facts in as little time as possible. Teddy is great! 7 pounds 6 ounces this morning. He’s a regular monster in the NICU these days.

He had his eye exam yesterday to check on his ROP (retinopathy of prematurity) and for the first time the doctor said that he eyes looked matured. Instead of saying “We’ll see him every week,” or “Every two weeks,” he said that they would want to see him again in 3 weeks. There wasn’t a mention of regular checkups! This is wonderful.

He still has CLD. He has chronic lung disease. Short and unacademic summary: He developed this in the weeks he struggled to breathe and was on the vent and it caused permanent damage to the lung tissue he has. The thing is that he’s going to grow a lot more lung tissue as he grows up, and the damaged lung will form less and less a percentage of the whole, until it doesn’t really affect him. But now it means that he is having a hard time weaning off of oxygen. He’s been cycling from 3 to 2 to 1.5 to 3 to 2 liters of flow for the past month with, until yesterday a consistent need for 30-40 percent oxygen. Yesterday saw him have some ability to do well in the lower 20s percentages. But this is accompanied by large desats and a very blue looking baby – something that until recently he had had fewer and fewer of. It’s frustrating, even as we cheer on the babies who have been on the journey here with him, we wish that he too was now off of oxygen. His lung disease means he has to work to breathe. It’s tiring. But they WILL send him home on oxygen.

Eating is tiring too. They WON’T send him home until he can take all of his food by the nipple. This isn’t true in the very long term, but let’s not go there – he’ll get there. But it’s slow. While he is now gestationally and size wise a typical newborn, he still can’t automatically do all the things we take for granted in newborns, like the ability to suck, swallow and breathe all at the same time. It exhausts him, and he is still unable to do it for all of his feeds. Right now, instead of nippling every other, or every third, we’re starting to nipple him any time he looks awake enough or shows interest in it (smacking his lips). Then, if he poops out during it, we gavage the rest via his NG tube. If he is blatantly too tired to try, and he is very good at letting us know this- he just won’t open his mouth for the nipple, then we just gavage him for a whole feed. This is what keeps him in the hospital.

But the doctors are preparing for him to all of a sudden “get it.” They’re talking about switching him to the type of oxygen machine that we would use at home. Its called a pedia flow (don’t hold me to this, I haven’t googled it yet, so I might even have the name wrong). According to his respiratory therapist the difference between this and the machine he’s on now is there is no blender – no machine mixing regular air with oxygen, which is what we talk about when we speak of oxygen percentages. This machine would provide him with pure oxygen, something they wouldn’t do until the risk of ROP was passed. The eye doctors proclamation of maturity was a big step toward this! His eyes are ready for pure oxygen without risking damaging immature capillaries. SInce it is pure oxygen, there isn’t a need for the flow that he currently has. Right now he’s getting 1.5-3 liters of flow, on the pedia flow he could conceivably only need .5 or even .1. Dr. Fuentes said that some babies, once placed on this different type of oxygen, wean very quickly, so I’m hopeful.

It’s daunting to thinking of bringing home a baby, our first baby for two people with very little experience with them, on oxygen. More than that, his immune system and especially his lungs will be very susceptible and fragile. A small virus called RSV, what looks like a minor cold in adults, could put him back in the hospital on the ventilator, or worse. This is why Teddy won’t be able to go to the wonderful daycare he and Gabe were on the waiting list for. It was right across the street from Heather’s office as a part of the university’s childhood development graduate program. He can’t be in the same room with other little children. So we will need to hire a nanny instead. It’s funny, these little things are hard… We will also have to be very careful about who touches him, and who comes in our house. While many parents of preemies totally isolate them when they come home, we really don’t want to do that. But to give Teddy the social interactions of friends and family that we want him to have, we’ll have to ask those friends and family to remove their shoes at the door, wash their hands immediately, sanitize their phones or place them in bags, and use sanitizer before touching Teddy. And we’ll have to trust everyone to not come in if they are sick, or have been around people who are sick. This is a big thing, and also hard.

But the thought of having our boy, our big, big boy home is still the most awe-inspiring miraculous thing. I hope hope that it’s soon. His nursery is all ready for him, filled with the gifts you’ve all sent, and family items passed down through the generations.

Tucker already knows his place in the nursery.
Tucker already knows his place in the nursery.

I have so much to tell you all, and no time these days. Thank you. Thank you so much for everything. It’s overwhelming the love and support we’ve received. Thank you.

Oneweek

16 weeks
16 weeks

Day 107: Belated

Teddy turned 15 weeks on Wednesday and we completed neglected to mention it. He’s now 6 pounds 15 ounces. He’s still on 2 liters of oxygen and working on nippling. He’s on again off again, nippling as many as 3 times in a row and then being completed exhausted for half the day. He is however down to the 22 calorie formula (as opposed to the “high” calorie formulas at 27 and 24). This is the formula that he will end up going home on. One more small step! We adore him more each day, even as his reputation for flatulence grows and spreads wide in the NICU (yes, pun intended).

15 weeks!
15 weeks!

Oneweek

Virtual Baby Shower!

Are you up for a crazy idea? We’re not sure how this will work, but I think it’ll be a fun experiment.

Teddy will be coming home soon! Let’s help Heather and Abigail ready his new home and take a moment to celebrate him with a group hangout that will include a tour of the NICU.

When
Sunday, May 22, at 4pm

Where
Google: https://plus.google.com/events/c2i3tjdplu4dh6u6l0ab45amuhs?authkey=CJW6x7LJjMnKfQ
YouTube: http://www.youtube.com/watch?v=Tf1_BFSx-OE

Moms are registered at https://www.amazon.com/gp/baby-reg/abigail-noonan-heather-barney-may-2016-daniabeach?ie=UTF8&lid=3C9TOBKX33MX9, and there’s a fund set up at https://donate.democracyengine.com/TeddysFund/contribute if you’d rather contribute to the beer/special-needs nanny fund.

Please feel free to invite other people. You can access Google Hangouts from your phone or computer. Let me know if you have any trouble! (kellygo@gmail.com)

Tips

  1. If you want to join the Google hangout, send me your email to kellygo@gmail.com, please.
  2. On the day of the shower, first have Google hangouts open on your computer or phone. Then click on the Google link and join the “broadcast.” It will look like a fairly blank page, but then you will get a call from me (Kelly) from the Google Hangout.
  3. If you’re unable to join the Hangout, you can watch it on the YouTube Live Channel. You won’t be able to join in the conversation, but you’ll be able see the moms and Teddy, which will be lovely.
  4. If you’re on your phone and there’s a lot of ambient noise, use your earbuds.

Day 101: 100 Days, plus one

100 days of Teddy. When you put it that way, what a wonderful span of time. Teddy is doing well. They moved him back down to 2 liters yesterday. We’re trying to move slower than last time we tried to move him to low flow oxygen when we also tried to move him to nippling at every feed (or “as tolerated”. Still a long story, still don’t feel like typing it out!). He got very tired last time and we’re trying to avoid that. We’ve also changed the nipple on the bottle from “the blue one” to “the white one.” The little details that make our lives… We’re hoping that he won’t collapse the nipple so much on the white one and get more bang for his sucking buck.

I want to be all reflective and eloquent about 100 days in the NICU with our boy. 98 days in the NICU without our boy. I had ideas in my head to tell you the things we’ve done so many times that they’ve become the texture of our lives. We know which scrub-in faucet is warmer than the other, which pattern on the robes means small and which means large, we know the names of many incredible men and women who daily keep us sane (ha!) and Teddy alive. The little things about Teddy that have grown to make him him – his silly faces, incredible farts, and still-so-quiet angry cries when he is hungry. There are a lot of things…someday!

In the mean-time we still use him as a vehicle for super cute clothing, which is after all half the reason for babies.

This is the pattern of gown for the larger ones.. in case you were wondering.
This is the pattern on the larger gowns. in case you were wondering.
There's a firetruck! On the butt!
There’s a firetruck! On the butt!

Day 98: 14 Weeks

Teddy is doing much the same as he was last week. He is still usually around 30-40 percent oxygen on 3 liters of oxygen, nippling every other feed and being extraordinarily handsome. The biggest difference is his weight, now up to 6 pounds and 3 ounces! Everyone who looks at him in the NICU, every time they look at him, comments on how big he is. He is just (as we keep saying) so baby! He no longer looks like a preemie, just like a small baby who happens to be on oxygen and have an NG tube. It’s extraordinary and delightful. He makes my every minute, even as I struggle a bit with starting work and being unable to spend as much time at the NICU.

14 Weeks! (Part 2)
14 Weeks! (Part 2)

 

14 weeks! (part 1)
14 weeks! (part 1)
One week (for comparison)
One week (for comparison)
Its tiring being so baby.
Its tiring being so baby.

 

Day 95: Mothers’ Day

I was expecting today to be bittersweet- missing Gabe and visiting Teddy in the hospital. Instead it was just entirely sweet. I slept in; Heather taking the morning shift after dropping her friend Laura off at the hospital. I took the noon shift with my mom, enjoying the “Happy Mother’s Day,” of each and every nurse that we saw. When we arrived at Teddy’s crib we saw that “Teddy went to art class.”

Mother's Day "Art Class"
Mother’s Day “Art Class”

The rest of our Mother’s Day was spent exchanging gifts, visiting Teddy and taking long, indulgent naps. Our visit with Teddy, after insisting that a grumpy boy eat, was particularly nice. He was awake and alert, and nearly completely able to hide all of his smiles from my phone’s camera.

We almost caught the smile here.
We almost caught the smile here.

You might notice that he has different looking equipment on his face. The doctors and nurses determined that he was getting too tired on the 2 liter low flow oxygen and moved him back to high flow 3 liter. Elena, the respiratory therapist, made a trip to the pediatrics department to get him these all-in-one cannulas that include the tegaderm and duoderm. While we don’t like that it further hides his cute cheeks, they stay in place better and are much easier to put on.

There’s a long story that I’m not going to take the time to explain about his feeding. Short story- they tried to get him to nipple every 3 hours (every feed) and he got very tired over the course of 24 hours. It was extremely evident- he didn’t finish the bottles, didn’t have any charming awake times and dark circles formed around his eyes. For now he’s been moved back to nippling every other time and he is doing much better.

These small setbacks add up to a boy who is unlikely to go home in the next 2 weeks, as we were told was a possibility a week ago. It turns out that our nurse was upset the doctors had told us that, when she believed it would be quite longer than that. Magical thinking goes both ways.

But we enjoy the boy any way we can get him. We think he enjoys his two moms. Happy Mothers’ Day!

Outfit provided by Uncle M
Outfit provided by Uncle Matt and Aunt Lori

Day 91: Thirteen Weeks (in pictures)

Moms are tired these days. Heather is doing double practices as the rowing season reaches its peak, and I started working again today (nice to hear those friendly voices!). So here is a pretty big thirteen week birthdayversary in pictures.

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Thirteen weeks!

 

Oneweek
One week for comparison

 

Grammy is here!
Grammy is here!

 

First "real" bath (in water as opposed to a wet cloth wipe down)
First “real” bath (in water as opposed to a wet cloth wipe down)

 

He moved down to two liter flow on the oxygen. This is no longer high flow and moved him to a smaller cannula!
He moved down to two liter flow on the oxygen. This is no longer high flow and moved him to a smaller cannula! He also ate a lot better without his NG tube in, so we may try removing and replacing it every 6 hours.

Day 89: Magical Thinking

Teddy is doing great. He’s 2515 grams as of yesterday, or 5 pounds and 9 ounces. He had a follow-up echocardiogram this morning that showed that his PDA, while not resolved, is very tiny. We will be following up with a cardiologist when he comes home (and the pediatrician, and the preemie clinic, and the physical therapist and..). He is taking bottles every 6 hours and every other 6 hours being fed through a tube. While he gets tired with the bottles he is gamely trying each time, occasionally while sleeping. He hasn’t had an official brady since April 14, though he did dip below 100 beats per minutes several times today for the first time in more than a week. He’s doing so great.

Porky Preemie
Porky Preemie

The nurses don’t use the word “home,” around the babies. They say the babies will hear and this may cause them to not do as well. The don’t say aloud when they’ve lowered the oxygen or pressure in trying to wean them off vents, CPAPs, and flow oxygen. They call “quiet,” the “q word” and glare at anyone who dare use it when the NICU seems calm, or there aren’t very many sick babies, or the alarms aren’t going off. The NICU is such a superficially superstitious place. They don’t really mean it. But they do (really?).

Heather and I fit in easily with this belief that our smallest words or actions would have effects on our baby. When Teddy was bradying and desatting frequently we would try to find reasons for the episodes beyond the fact that he was so sick. If he bradied while we were looking at facebook we would attribute it to our inattention. We started to list the things he didn’t like- that “caused” him to brady. He bradied because he didn’t like the song we were singing (“For Good”), because he didn’t like that Heather was looking at race results, because he didn’t like the chapter of Harry Potter that we were on (“Prisoner of Azkaban,” Chapter 2), because I looked at the Huffington Post instead of singing to him. It didn’t make sense. It wasn’t rational. It wasn’t really those things. It wasn’t, but it was? But it wasn’t. And then he got better.

They’ve taken him off the caffeine dose that he’s been on since birth. They decided he didn’t need it anymore. Maybe that was the reason for the brief unofficial bradies today; or maybe it was the funny face I made at him. How do we know!?

What I do know is that I’ve never gotten an answer to the question of when he might come the-place-that-he’ll-go-to-when-he’s-better (home). It’s always been, “Be patient Mommy,” and “He’s on he’s own schedule.” I stopped asking quite a while ago. But then a week or two ago people starting asking me things like, “Do you have his nursery ready?” And I began to wonder if maybe the h-word was in our foreseeable future. I got my nerve up to ask this again at rounds yesterday. And the matter-of-fact (not-in-concrete) answer was, “Maybe in two to three weeks. It depends how he does with his oxygen wean and the eating.”

It’s hard to describe how I feel about this. Home? HOME! We would have a baby, our Teddy, in our house, and he would be ours. I could hold him and there wouldn’t be anyone else in the room. We could bring our son home. Is it jinxing it to believe that it might be true? I hope not. I don’t think so. Yes?

But, two to three weeks! It would be magic, wouldn’t it?

Magical
Magical