Monday, September 18th
Today Nolan’s “tent” was removed. This is a milestone marking the end of the first 72 hours — the tent is a plastic box over the bed that preserves a humid environment, presumably to help Nolan transition from the womb to the world. It’s removed after 72 hours. They do keep a heat lamp on him to keep him toasty warm. (The NICU is a much warmer place than the rest of the hospital!)
Nolan looks good and is squirming around. His CO2 numbers remain stable, which is great.
The family is camped out in the waiting room of the sixth floor of the women’s hospital, where Kara is staying. It’s a nice waiting room and we’ll be sorry not to have it once Kara leaves the hospital today. We’ve rearranged the furniture so we can all sit together, and there’s a fridge where we can keep food for Kara and Ronan and ourselves. Ronan’s parents, Susan and Robert, have come from the mountains, and his brother Shannon flew in from Salt Lake City last week once he heard what was happening. On Kara’s side of the family, we have her parents, Carolyn and Lynn, and her sister Maria (me) and sister’s partner Deb, all camped out in the waiting room with Ronan’s family. Kara’s brother David and his family visit as much as they can.
We are really feeling the rollercoaster of emotions today. There is so little information and what information there is, is hard to interpret because it typically boils down to “this finding correlates with this outcome to some degree, but we really won’t know for XXX time.” Yesterday was hard because the CO2 situation meant they might have to put Nolan on a bigger, more powerful ventilator, and our gut tells us that increasing equipment is a bad thing. When they didn’t have to put him on the bigger ventilator, we all felt relieved and relaxed somewhat. Today, we have gotten the results of the brain ultrasound, which showed a grade 4 bleed in the right side of Nolan’s brain. That correlates with an increased risk of developmental disabilities and cerebral palsy, though we really don’t know to what degree the risk increases. We were pretty wiped out after getting that news.
As far as the bleed goes, it is hard to say what it means exactly. It is of course a concern, because every problem complicates the picture and adds more stress to Nolan’s whole system. Cerebral hemorrhage is graded from one to four, with one being minor. The fact that the bleeding is on only one side of the brain is good. It is possible that the bleeding will spread to the other side, so we are praying that won’t happen. They will do another ultrasound in a week or so to check the status. The bleeding will resolve on its own at some point and there isn’t anything they can do to hasten the process. That means that knowing the status of the bleed doesn’t change anything about treatment. The main thing we look to is what the brain looks like after the bleeding has resolved. That’s not a question that will be answered in the short term, as I understand it.
More information will be posted as it is available…
-Maria
Saturday, September 23, 2006 at 11:29 pm
[…] The oscillating ventilator would resolve at least the first problem and possibly the second problem. The way I understand it works is that it keeps the lungs inflated all the time and gives lots of quick small puffs. Kara said that it would breath out for him as well, unlike a traditional ventilator which just puts air in the lungs and relies on the natural “collapse” of the lungs to push air back out. Nolan’s lungs aren’t pliable enough to push that air back out on their own. The oscillating ventilator would get it out for him, and I think that by keeping the lungs inflated and having to use less forceful pressure, it would injure his lungs less. Of course, there’s a drawback, or they would have put him on it a long time ago. Apparently it vibrates in order to do its job. The vibrations pose a real risk to the fragile blood vessels in Nolan’s brain. As long as the bleeding stays in one side of the brain, there’s a reasonable chance that the other side of his brain will be able to compensate for any damage done. Using the oscillating ventilator would increase the risk of bleeding on the other side. (Here is the original post about the bleed.) The steroids would help the lungs grow, which could help them begin to push air back out as well as resist injury. However, the steroids are associated with marked increased risk of cerebral palsy and mental retardation, so they don’t come without problems, either. […]
Wednesday, September 27, 2006 at 5:39 pm
kara, ronan and nolan- we are holding you in the light and sending strong thoughts your way. ronan, you may have heard from leonora that we are expecting another baby due in late december (just a few weeks after nolan’s original due date)–so i feel really connected to nolan even though we are far away and in loose touch. we think of you all every time we use our teapot and look at our cool ‘pod jar’. it sounds like you and kara are doing an amazing job. nolan is so lucky to have you and the rest of your family.
sarah white