An update

Well, some good news. Sam is stable.

His belly is red and swollen, but there’s been no perforations. They’ve reduced his x-rays from every few hours to now being every 12 hours. No more blood is coming out of his replogal. He’s still on a ton of medications, still getting blood products like crazy. One of his blood samples did test positive for bacteria — still waiting to find out what.

I had a nice visit with him this evening. He was on his side, facing away from me during his hands-on. I reached in to take his hand, talk to him. He opened his eyes and I could see him straining to look over towards my voice. Once the nurses placed him on his belly and were done with everything I was able to face him directly, give him preemie massage, rub his back. He watched me the entire time. I could tell he loved the foot massages because everytime I released his foot, he stretched it out towards my hand again. Oh I do love that little boy.

He is still incredibly sick. Compared to last time though, he looks fantastic. It was nice to see him alert this evening. Even his doctors and nurses have all said that even with everything he has happening right now, he looks great.

Another thing he’s also dealing with, forgot to write about this earlier, is pulmonary hypertension. I haven’t researched this too much yet since we got sidetracked with NEC. They discovered the hypertension on Thursday during one of his echos checking on his holey heart. All three holes are still there, no changes.

I’ll be done with the latest round of antibiotics on Tuesday. I talked to his doctors today, asked what we should do. If the milk tests clean, great. But what happens if it gets infected again? How will we know? We’re going to explore this more next week: testing weekly, biweekly, whatever they think is safe. I’m just paranoid at the idea that I could make him sick in the future. Even Sebastien — he’s doing fine on formula. If we switch him to breast milk and he gets sick, that will be difficult to live with. The doctors are saying that any BM is better than none, so it’s better to try. I’m less concerned about Sebastien having an issue, more worried about Samuel. When they want to fortify the BM later, will he get sick again? How do we know if he has an intolerance to something? We just wont know, can’t know until we try. But damn, I don’t want to have several more rounds of sickness, taking steps back for several weeks each time.

Sebastien’s doing well. He’s in an open air crib, he’s maintaining his body temperature. His feeding tube was pulled up into his stomach. They’re working to wean the humidity down on the cannula. We’re hopeful he’ll be home by his due date. But he still has his huge PDA. I asked his doctor yesterday what happens if he’s 38 weeks or so, taking bottles, no cannula, everything’s ready for him to go home but he still has that hole. She doesn’t know. Great.

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5 thoughts on “An update

  1. Mom says:

    Oh, I love that little Samuel. I have kept praying for him. I told the people in my Sunday School Class yesterday’s party about Samuel being sick. They were all as sad as me. They all told me they would pray for him more.

  2. That is so sweet about the foot massage…

    I just looked it up and Alice did have a heart murmur from a small PDA when she was born at term, but it closed after three days (right before they let us leave the hospital). From what I understand a heart murmur from a small PDA is pretty common at birth. Is it partially or fully open for the boys?

    For Sam, could the hypertension (since it’s new) just be secondary to something else like the NEC?

    I thought Sam was getting BM from a donor before he got taken off because of the NEC. When he gets put back on, they won’t have donor milk anymore? I know yours is preferable. It would be so great if they could keep you on low grade antibiotics and do biweekly testing.

    • They both have large PDAs. They typically close with fullterm babies; preemies usually need the medication or surgery. What I don’t fully understand is why they never did this in our case — they’ve said that neither boy showed any issue with the PDA so they wanted to let it play out and close by themselves. They haven’t yet.

      For Sam, I think the hypertension is related to the PDA. See if this link works: excerpt from the best preemie book out there.

      Sam is getting donor milk, but there’s not an unlimited supply — it’s very expensive. The doctors are hoping that my BM will come back ok. If it doesn’t, we’ll go from there, but I’m not sure how much donor milk they originally ordered.

      • Thanks for the link… I understand better now. Also, I read that the medicine that closes the PDA has some pretty potentially serious side effects that can cause a whole host of other problems–maybe the wait and see approach has the least risk, and if the PDAs don’t resolve on their own surgery later is less risky. Hopefully they do close on their own though!

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