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! (email@example.com)
If you want to join the Google hangout, send me your email to firstname.lastname@example.org, please.
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.
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.
If you’re on your phone and there’s a lot of ambient noise, use your earbuds.
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.
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.
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.”
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.
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!
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.
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.
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?
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.
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.
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.
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!
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.
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.
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.