Heather is at a regatta, and I got three wisdom teeth pulled …

I had them pulled Tuesday. All is well, and I don’t feel that bad. I did take yesterday off from the hosptital, but then today, I spent most of the day there.

So, Heather left this morning. But, Gary gets here tomorrow. I’m loolong forward to seeing him.

Teddy … He’s huge — 5 pounds 3 ounces. So big!! He’s been “nippling” or bottle feeding every other feed, so it’s been about four times a day. He got tired of the nippling and had to finish via tube, but that will happen.

Teddy is wearing an outfit that his Grandma Barney gave him. The feet are hemmed for the sat cords. And again, for comparison, we’ve placed this next to a picture of Teddy at two weeks old. Big Teddy is getting bigger.

Two weeks for comparison...
Two weeks for comparison…

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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 81: First Bottle!

Teddy ate! Today Teddy was given his first bottle of milk. Mary Ann asked for and was given the okay to attempt to give him one bottle a day, starting today, at rounds this morning. Heather and I had taken the morning off, and arrived at the NICU at 11 am for his noon feeding. As I walked in Elena said over the bed of another baby, “She (her mom, our nurse Mary Ann) has a suprise for you.” I knew immediately that it had to be food! Food! For the first time after three months.

Our boy was a rockstar today. Mary Ann started him on the bottle, showing us the best way to do it while keeping his airway open and not overstressing him. I love the moment he widens his eyes as he takes his first full taste and swallow of milk.

Then it was my turn. I selfishly took the first turn, while Heather took a lot of really great pictures. As you can see, I was a little pleased with the whole process.

We enjoyed his first bottle

He finished the whole bottle in around 10 minutes without de-satting or needing extra oxygen. This is incredible, the best possible attempt.

 

It was a weekend of important and large steps for our little, big Bear. For now he will be getting one bottle a day while we make sure he can tolerate them. Hopefully soon he’ll be moved up to 2 a day, and so on until our boy is eating full-on bottle!

 

 

 

 

 

 

Day 80: Not a Baby Step

Teddy had a huge day today, though it happened quietly. His nurse texted me at around 1 pm to let me know that they had taken the Bear off of CPAP and placed him on high flow cannula oxygen, 4 liters of flow, with his oxygen going up around 5% to 41%.  When I came in, the bubbling water providing the pressure, and the white tube leading to it were gone. Otherwise everything looked the same, Teddy was laying in the same place and looking really quite the same.

LIke he didn't do do anything at all (other than pull out his OG tube for the second time today)
LIke he didn’t do do anything at all (other than pull out his OG tube for the second time today – leading to the switch to NG tube)

This is the huge! He no longer has the pressure support keeping his lungs open, just oxygen flowing through his cannula in his nose. The words don’t really convey how great this is.

Once we are sure that he is stable on the high flow oxygen, we can see if Teddy is ready to start eating! Though the nurses wouldn’t want me to say this aloud (or in writing – more later on the superstitious nature of the NICU), Teddy seems like he may be a good eater. He’s been willing to suck on his pacifier since just a few weeks old, and in the past weeks has been very eager to suck small drops of milk off the tip of the pacifier when offered. Keep your fingers crossed that this is actually the case. While moms have finally got the knack of holding Bear, his pacifier, his hand,  and keeping his syringe of food held above him to let gravity drop it through is OG/NG tubes, we are ready to try just holding him and a bottle.

Feeding
Much harder than it looks, really. And Mom’s job is tricky too.

Speaking of huge, Teddy hit 2230 grams tonight, almost 4 pounds and 15 ounces. He’s got 5 pounds in his sights and he’s going for it.

Day 78: Just pictures

Renal ultrasound. He got this because of he UTIs, but everything was normal
Renal ultrasound. He got this because of the UTIs, but everything was normal
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Our corner suite, though we moved to be aisle today. That’s Kelly our night time primary.
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His PEEP went down to 5 today. A big step!
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Checking things out in the hat his Grammy made for him.
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The pile of meds before he starts his meal. The saline bullets are for suctioning his nose.

Our view when we are trying not to bother him

Our view when we are trying not to bother him

He gets some extra blankets if his temp goes down at his three hour check.
He gets some extra blankets if his temp goes down at his three hour check.

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 74: Parenting

On many levels we are still just new parents trying to figure things out. The biggest difference is that where most new parents take their babies home and stumble through things trying to figure them out as they come, we have our baby in a NICU and ask Mary Ann about every. little. thing.

Today Heather was holding Teddy and we were talking about being Moms. I was admiring the mom that I already see her being. She expressed her doubts saying, “I don’t even know when to change his outfit. I had to ask Mary Ann yesterday.”

"We don't know what we're doing!"
“We don’t know what we’re doing!”

I had to turn around and share this with Mary Ann, as we had had the same exact conversation that very morning – with me asking her several times whether I should change Teddy’s outfit (which looked clean but had been on for 36 hours), or leave him alone as he still doesn’t like the process of being changed. She kept on saying that that was the parents’ decision, When I laughingly shared Heather’s indecision about the same thing (though of course she already knew about it) she finally gave us an answer. “I changed my kids in the morning when they got up; and at night, after their baths, into pj’s. You know, like you and I do. And if they pooped on anything, I changed again.”

We laughed. We’ve become so used to everything being about oxygen saturation levels and x-rays, iv’s and inhaled drugs that we forgot that some things are just about babies being people. Or maybe we’ve just gotten used to Mary Ann telling us what to do! We’ll get used to it I’m sure when Teddy comes home!

That is of course still a while away. Teddy is doing great, so great. He’s gaining weight and looks like an entirely different baby from a month ago.

Gang Signs
Gang Signs

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He’s rarely bradying and no longer doing it as a regular response to touching. He often will just lie in bed and look around at the room, just taking things in as Heather and I try silly voices to get his attention (they’re not intentionally silly, but I’m pretty sure they are). When he does have episodes it is frequently when he is being fed via his oral gastric tube. This could be a symptom of reflux, or it could just be the difficulty of digesting food, sucking on his binky and breathing all at the same time.. He still desats, but not nearly as frequently, sometimes briefly before bouncing back up and sometimes a slow decline until he’s rarely getting into the mid-80s. With those, he is usually fixed by getting an unpleasant (but very effective) suctioning of his nostrils and mouth. This need is also a lot less frequent than it used to be. While the wean is going slowly, they have been able to lower his PEEP level to 6. Five is the lowest they will use on the CPAP before moving him to just oxygen flow. They’ve been less successful bringing his O2 level down and he is fluctuating between 35-45 percent, depending seemingly on his mood.

The acute extension is a lot more cramped than acute was – eight babies per row instead of six. We are at the end of the row and our chair is so close to a sink that we aren’t able to sit side-by-side next to Teddy anymore, or even get the chair out of the space. But every nurse coming back to visit from acute is exhausted. One flopped into a chair and declared she hadn’t been one-on-one with a baby in 6 months and she’d forgotten how exhausting it was. Many of the babies in acute are so sick they are requiring one-on-one care. We’ve had Mary Ann for 4 days in a row and expect to see her at least the next 2 days. This is after she said on Tuesday that the NICU was so empty that she didn’t think she’d get more than the full-time three days this week. Things change on a dime. While we are cramped, we are so grateful that Teddy was well enough to be moved back in the unit along with our neighbor from acute.

This feels like a lot of talk to say not much. As I said to Dr. Tryzmel today, rounds are boring these days. There isn’t a lot to say about our waiting-and-growing preemie. Boring is good. Meanwhile we’ll figure out how to dress him before we take him home. It’s the little things.

Day 71: Ten Weeks (and one day)

On Monday Teddy hit 34 weeks gestational age. On Wednesday he hit 10 weeks actual age! He has gotten so much bigger. Last night he was 1800 grams, almost three times the 610 grams he was born at. Comparing the teddy bear weekly pictures make this incredible growth really obvious.

Oneweek
One week for comparison (forgot we had this pic!)
10weeks
10 weeks

The big news, other than our huge baby, is that Teddy has moved to what they call “acute extension,” two rows further from the front of the NICU. This is still “acute” care. But they had a lot of sick kids come in to the unit this week, too many for the section that they reserve for the acute kids. So they have moved two of the most stable kids into the progressive section while still giving them to 2-1 nursing care thwy would receive in acute. It’s great to know we have one of the most stable kids! It’s weird to be in progressive where Teddy is now once again one of the small kids on the block. The best part however has been the joy the nurses are taking in Teddy’s transition. After 10 weeks in the same place, person after person noticed that Teddy was no longer in his corner and came and found us to ooh and ahh over his progress, size and consistently remarkable good looks. The secretary and nurse manager remarked on my “saunter and grin,” as I walked from our new place to the door this afternoon.

One other very fun note of progress is that Teddy is now tracking our voices when we talk. He will turn his head to see us; something that the physical therapist has us taking advantage of to get him to turn his head from the side that he has grown to prefer.

Why hello there!
Why hello there!

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 65: Big Boy

There’s an odd contrast to this blog right now. Our time at the NICU is becoming more and more meaningful as we are allowed more contact with out big little boy. He’s 1640 grams now and we are frequently (depending on the nurse) allowed to hold him for hours at a time. This is stretching our parenting skills a bit. I was amazed and embarrassed to be told yesterday that I am actually allowed to hold him in multiple different positions, not just the cradled arms he is placed in. I’m even allowed to switch positions! WITHOUT ASKING PERMISSION. The power is intoxicating.

No one told me about this holding position. We just figured it out together.
No one told me about this holding position. We just figured it out together.

We are also enjoying the power of clothing him. The fact that we get to entirely choose his wardrobe for at least the next three years has me quite tickled. It’s still a bit tricky as most preemie clothes start at 5 pounds and Teddy is currently clocking in at 3 pounds 9 ounces. Some outfits are close and, as you’ve seen, have been modified by Grandmom to work. Mary Ann recommended that we buy newborn t-shirts for him to wear as robes. While these aren’t the easiest things to find, the effort is clearly worth it:

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I do my own stunts.

But medically he isn’t changing very much right now and this blog so far has been about updating you on his sometimes critical status. It’s a waiting game now, or as the doctors said to me today, in a rephrasing of something they say every day, “Take it day-by-day Mommy.” (I have feelings about the doctors always referring to me as “Mommy,” while I call them “Dr.” but we don’t have to go into that now.) He is growing and his feeds are increasing, which is great! His CPAP hasn’t been weaned since they put him on it. He is still on CPAP level 8 and ranging these days between 35 and 45% oxygen. He needs to get off of this before he gets to his next big step, his move from the acute care section of the NICU to “progressive” care.

Until then, we are enjoying our Teddy time, but sometimes feel at a loss for words on the blog. But we love that you are checking in.  A couple have people have mentioned that they aren’t getting the emails telling them that there is a new post anymore. I checked in with Lee and Bill and they said that we have enough subscribers that some email servers are marking it as spam. They are tweaking it for us!

Love to you all.