When I was younger, I used to like to go on roller coasters. They were lots of fun and the faster and steeper they went, the better it was. You’d get a rush of adrenaline, and you’d want to go right back on again, even if waiting in the line another hour.
Kristen and I both want off the current roller coaster we’re on with Samuel. It’s emotionally draining and physically exhausting. There’s no adrenaline rush – just some tears and sadness as our little boy works hard the first month of his life. We get enjoyment out of spending time with him, but we just want him to get better and out of these ups and downs.
Today is Week 4 since the boys were born, and while Jacob and Charlie continue to make positive strides forward, it’s a two steps forward, 1.5 steps backwards for Samuel.
Let’s start with Sammy. He’s weighing in at 3 pounds, 14 oz yesterday. Today he gained 150 grams (5oz.), which is all but impossible. We know it’s one of the side effects from his up-and-down week:
- Heavy breathing and looking uncomfortable
- A three-day treatment of Indomethacin to treat his PDA.
- Not eating / getting any milk during the Indomethacin treatment.
- Getting an IV to get nutrition and fluids while not eating.
- Not peeing because of the Indomethacin
- Getting a treatment of Lasix (a diuretic) to help reduce the fluid that’s built up because of the IV and not peeing.
- Being put back on the CPAP machine because of the fluid build up.
- Being taken off the CPAP machine and back to Vapotherm.
- Needing 55% oxygen on Vapotherm, so going back to CPAP
- Having blood pulled to check for any infections.
- Getting an injection of antibiotics in case there’s an infection in his lungs from all the fluid buildup.
- Having a steady supply of eye gunk.
- Getting stuck with a needle so many times, the nurses are running out of veins to stick.
I had some words (stern, though not angry words) with the doctors this morning, as Kristen and I are frustrated with what seems to be an inconsistent plan of care. We continue to encounter a slew of doctors who all take different approaches, and it seems that sometimes the doctors take actions that are counter to what another doctor had prescribed, or told us. They all have their own approach to medicine.
You would think we’d see the same doctor or doctors on a regular basis, and it’s been anything but. I’m not sure how many neonatologists work at John Muir Walnut Creek, but I can count at least 8 different doctors over the past four weeks
We’re very close to this situation and frustrated to see Samuel not make the progress we think he should be making, though that progress may be unfair on a day-to-day basis. He is a premature baby not even 35 weeks old gestationally. It’s also just sad to see him looking so sad and tired. Sometimes no news from the doctor may be better.
One doctor told us the Indomethacin showed a 0.5mm reduction in the PDA. It’s now down to 2.5mm, from 3.0mm. He said the cardiologist told him if she saw a baby with 2.5mm PDA, she wouldn’t take any action at all and just would let it heal. A prior doctor told us normal for newborns is 1.5mm to 1.8mm. A doctor this morning said it was sealed enough to make a difference in the murmur.
If you pull out a ruler and remember that 10mm = 1cm, you can see how 3.0 to 2.5mm looks like next to nothing. I guess it makes some level of difference though. We just have to do more waiting for a few days before they decide if it truly is behind us as a problem or not.
When I left the hospital on Wednesday night, his IV was leaking and the nurses needed to put a new one in. It took them about 15 minutes to find a suitable vein. He handled all he poking and prodding like a champ though. That boy is going to be golden and get whatever he wants for a while. I keep promising him an extra scoop of ice cream. That’s a promise I’ll keep. (Also for the record, my dad, David Mazza, promised to become a Miami Dolphins fan when Sammy gets well. We will all get together next year and watch a Dolphins game. It’s amazing how a 4-week old boy can make him a Fins fan, something his 40-something son couldn’t ever do).
Jacob is now at 4 pounds, 2oz. He’s now out of his incubator and is into a bassinet. He’s getting some good feedings, and he’s practicing his breastfeeding with Kristen, and his bottle feeding with me, Kristen and the nurses. I’m told last night he took 44% of one feed via bottle. That’s outstanding progress. He has a ways to go on the feeding, but I expect over the next two weeks he’ll become a champ. Feeding on his own is the last major hurdle he has to pass before he comes home, since he can already maintain his temperature on his own, and he’s at the minimum weight for the car seat.
Kristen did tell me that Jacob had a nice reflux episode today. Reflux for these newborns is a complete vomit of their breastmilk. Now that we’re dressing him in some outfits, I’m discovering why we need more zipper outfits than snaps.
Charlie is now 3 pounds, 12oz. He’s still the smallest boy, but he’s doing quite well. He’s now able to maintain his temperature comfortably, so his top is popped permanently, and he’s getting dressed in clothes now too. He only has his heart monitors, pulse-ox monitor and feeding tube connecting him, just like Jacob. Charlie’s also practicing his breastfeeding and bottle feeding. The nurse tells me he took 29% of one feeding at 3:30 this morning, and then the rest through the feeding tube. He’s managing a few sucks and swallows when Kristen breastfeeds him, so he’s getting the hang of it.
Kristen said just as Jacob had his reflux episode, Charlie joined in, destroying his outfit with vomit. Oh well! I guess we’ll be doing laundry forever.
I posted an ad on Care.com for a nanny. We decided it’s time to start the interviewing and hiring process, so when the boys come home we have somebody we can start with quickly. We’ll break them in with Jacob when he gets home (my prediction: The week of the 18th.) and then Charlie (my prediction: The week of the 25th). Samuel may not be home with us until early Feb.
On Saturday, Kristen and I will go to the hospital in the morning, and then we’re going to Half Moon Bay for an evening at the Ritz Carlton, and a nice dinner out. This was the baby moon we had planned for the weekend that she went into the hospital at the 24-week mark, so we’re making it up. We have to, since we have gift certificates that are only good at a Ritz Carlton! We’ll be back to the hospital on Sunday.
Finally, next week I’m likely to have a delayed update since I’m traveling for work. I’ll be in Chicago, Boston, New York and Atlanta over a 4-day period. I literally wake up, go to meetings until 3pm each day and then head to the airport to fly to the next city. Brutal! Even more brutal that I won’t be able to see my boys other than on FaceTime.