One of a kind

We sort of always knew that my pregnancy was unique, that our kids were unique. Of course, everyone says that, but we got a bit more confirmation today, especially concerning Samuel. After all, we had mono-di twins (identical twins, shared placenta, two sacs), severe, selective IUGR affecting only Samuel. Sebastien was on cruise control in utero, Samuel’s always been fighting.

Dr. Specialist in Baltimore once commented to us that he had gone beyond the standard textbook protocol with us. Starting at  week 20, his recommendation was that we get cord occulation done for Samuel. We just couldn’t do it; we weighed the risks of continuing, giving him a chance, gambling a bit with his brother. How much has that gamble paid off?

Today we met with Samuel’s primary doctor; unfortunately he’s rotating out and we’re going to have another primary doctor for him for the next 5 weeks. We’re sad to see him go because we feel his instincts have kept Samuel alive. He’s also a unique doctor in that he’s actually mentioned the word ‘miracle,’ suggested we pray, referred to God. Not many doctors do that.

Most of his discussion today involved the many unknowns with Samuel. First, there’s no script or track record we can follow for his care. Why? Because there aren’t 27 weekers who weigh less than 400 grams. Most babies who are born smaller than 400 grams are under 25 weeks. All really. He said that this hospital has never had a 27 weeker at this weight, no doctor or facility has had this. We’re in uncharted territory.

We talked a bit about his delivery. The doctor said very few doctors and hospitals would have revived a baby at less than 400 grams. They’re survival rate is typically very low and/or they have major issues. He said that a lot of times they’ll do it, if the parents request it. He said he’s not sure if he would have done anything different in the delivery room, but we begged them to try again. We did; Samuel’s been remarkably stable.

Most of our unknowns still stem from the actual delivery, the trauma he experienced? How will that affect him in the long-term? We don’t know, they don’t know. Most of the major signs that would point to future problems haven’t come up. We do have one to watch for soon….a sign that won’t show until about 6-8 weeks after birth.

Since Samuel has always been stressed, he might not suffer any effects from the low oxygen/lack of oxygen after delivery. He was already used to it. All tests they ran on him right after were positive, showed good signs.

Overall, he’s more than pleased with Samuel’s progress, everyone is. Our current goal is to get him growing, gaining weight, getting larger. We’re working on it! We also have to get him off the oscillator/ventilator. When that will happen, we don’t know.

Our biggest concern right now is the VSD, the hole in the middle of his heart. His PDA closed, the ASD is relatively small, but the VSD is large. We need it to close. If it doesn’t, it’ll start causing major problems, especially in his lungs. If it doesn’t close, he’ll need open heart bypass surgery when he’s bigger and stronger (about 8 pounds).

He’ll have his first eye exam in a couple weeks. The doctor didn’t seem too concerned about his eyes because he was 27 weeks.

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2 thoughts on “One of a kind

  1. Samuels’s not alone!! There aren’t MANY babies born at 27+ and under 400 grams, but there are some! Go to http://www.medicine.uiowa.edu/tiniestbabies/ and check out the list. There are about 20 kids born at 27+ and under 400 grams. Every case has been confirmed with the attending physicians. Dr. Bell is the guy who runs it and has taken care of some of these children. You can contact him through the site. My daughter is baby #97 on the list, and I’m sure our doctors would be happy to talk with yours and see if there is anything they learned from Becca that would help Samuel. Our first attending was Dr. Weitkamp – his office phone number is 615-322-3475. He gave us the “there’s no textbook for babies like her” speech several times and did great with her. One of the purposes of this Iowa registry is to help connect doctors who work with these patients since there are so few that they can’t draw conclusions based on research – the data pool is too tiny!

    Still, even though he’s not alone, Samuel is definitely one of a kind! 🙂

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