I’m back from my travels. I spent the past five business days on the road, with stops in Chicago, Boston, NYC and Atlanta. But the best stop of the week for me is back in Walnut Creek, CA to hang with my boys.
The boys had an up-and-down week, as usual. This week was a bit scary for Samuel. Let’s start there.
On Tuesday afternoon, as I was flying from Chicago to Boston, Samuel had an episode where he had his typical reflux. But as the milk came back up, he was not able to turn his head and eject it from his body. Instead he started gagging on it and it caused him to choke and stop breathing. The heart rate monitor went from normal (~150-160 bpm) to ~7 to flat-line.
Kristen witnessed all this from the monitor while holding Charlie. Sometimes the cables on the monitors become detached, but she knew this was real when the nurse ran in and then called for help to others. The nurse told me they never had to do any chest compressions to restart his heart beat, and once they were able to clear his airway, he was able to start breathing again. They took steps to empty everything from his stomach, and made sure no milk made its way into his lungs. They’ve been watching closely the past few days for infection, but he seems OK.
The whole episode scared the bejesus out of Kristen, and of course me. I felt bad for Samuel that it happened and he’s having such a rough time, bad for Kristen that I wasn’t there for her and just miserable that I couldn’t do anything about it. Needless to say, I didn’t sleep well Tuesday night.
The doctor and nurses have changed Samuel’s feeding to a continuous feeding, where they drip the food in via gavage over a 4-hour window. So it goes very slowly now. They also gave him Lasix, a diuretic to try and rid him of some puffiness.
As of Saturday morning, he’s doing much better. He still has desats on a regular basis, but they’ve taken him off the CPAP and put him on a large cannula Vapotherm, with 4 liters per minute of flow, at 24% – 34% oxygen. The CPAP mask just isn’t making a good seal.
I have to say that he looks like he’s grown a ton. He had his eyes wide open this morning and his face and body are looking fuller. We just need to continue to be really patient as he works his way through it. The nurses continue to tell us that if there’s any abnormality, it’s with Jacob and Charlie doing so well. Remember, we’re only just more than 36-weeks old gestationally, with almost four weeks to go before their 40-week due date.
Special thanks to my mother-in-law, Karen, for dropping everything and driving to be with Kristen on Wednesday. That meant I didn’t have to interrupt my business trip and go home early. I’m glad Kristen had some help and support. And frankly she’s been wanting to come up and see the boys anyway, so I’m sure it wasn’t too much of a twist of the arm.
As of Saturday, Samuel weighs 4 pounds, 7oz. They say he went backwards from yesterday, but they attribute 4 or 5 ounces to the CPAP mask and hat that we was wearing. They did another echo to check his PDA and the good news is it’s now half the size it was before. The doctor estimates it’s just 1.5mm. Before it was 3.0mm. Finally, Samuel had his “top popped” meaning he’s no longer under the heat in his “isolette” (aka incubator).
Charlie has moved to his big-boy bed (i.e. the bassinet) and continues to do well. He’s still on Level A in the Pathways system, which means he’s not doing great on the bottle. The nurses say he’s still breathing a bit fast, which makes it hard to breathe when taking a bottle. They’re really conscious of doing it on his schedule under his conditions, because they don’t want the bottle feeding to be a miserable experience. So they try here and there, and he’s doing OK. This morning he took about 40% of a bottle, whereas last night he took just 4ml – not enough for them to even count it as a try. He continues to get the gavage feedings.
Charlie is up to 4 pounds, 11.4oz this morning. So he’s gone from the smallest baby to the second largest. Samuel weighs less, but Samuel physically looks bigger.
Charlie had his hearing test this week, which Kristen reports he passed with flying colors. Apparently they hook up monitors to his head and look for brainwave activity as they do the test. I’m glad he’s able to hear well. A speech therapist came by as well this week to look at his mouth since he’s not taking his bottle so well. They suggested a different low-flow nipple, but confirmed there are no issues with his mouth. So we’ve given him feedings with this nipple.
Saturday was bath day, so I got better video of Charlie’s bath, since my mother didn’t like the short video last week.
Jacob also got a hearing test this week and also passed. No issues there.
On Thursday, Kristen got a call from Dr. Nash, our pediatrician, who said he wanted to come by and do the circumcision for Jacob and Charlie. Dr. Wei, the neonatologist had called him and said both boys weren’t far from being released. Our preference is to have it done in the hospital before their release. Dr. Nash said Jacob was ready for the procedure, but Charlie needed a bit more growth before they took anything away. (Kristen’s always making fun of Charlie’s penis and how small it is. Poor baby boy. It’s not THAT small… he is a Mazza after all!)
Kristen and mom both liked Dr. Nash’s jokes. For example:
Dr. Nash: How much does Jacob weigh?
Kristen: He’s right at five pounds now.
Dr. Nash: Not for long. He’ll weigh a lot less when I’m done!
Kristen said Jacob took the circumcision like a champ and barely fussed. When he did, they gave him some sugar water and it calmed him right down. It will take a week or so for him to heal. It’s a bit painful for him to pee. He was really crying this morning, for example, and as I was changing his diaper, he peed all over the place (the wall, my hand, his clothes, his own hand, etc.), but he stopped crying immediately. I guess it was just painful. Glad to know the equipment still works though. Good job Dr. Nash!
Jacob has been on 100% bottle and breast feedings now for several days. He pulled out his feeding tube a few days ago and they left it out since he’s taking the feedings so well. The nurse told me this morning he seems to like the same nipple that Charlie is using. It’s causing less air to get into the bottle and he’s able to go further without burping. He’s just more comfortable with that. We’re also taking the advice from our friends Laura and Charles, who suggested we use Dr. Brown’s bottles. So we’ve ordered some of those. We’ll pickup a few today at Buy Buy Baby, along with a supply of formula.
Jacob is on “Pathway E” – the final step. And today we brought a carseat in for his carseat test. He’ll have to sit in the carseat for 90 minutes while maintaining his heart rate and oxygen levels. Kristen and I will attend a discharge class on Sunday afternoon. If the carseat test goes well, and he continues to take his feedings without the need for a tube, AND continues with no A’s B’s and D’s, he is scheduled to go home this week. Yahoo!!! It’s about to get real!
Finally, Jacob had his final ultrasound on his head, to check for any bleeding and they did an echo to check his PDA. It’s closed, though there’s a faint murmur still, but no cardiac follow up is needed.
That’s it for this week. It should be an exciting week if we can bring Jacob home this week, and Jacob will come home as soon as he learns to feed properly.