Thursday, April 30, 2009

A good talk with Dr. Su

As always, the Dr.'s at St. David are very generous with their time. Dr. Su hung out and talked to us for close to 45min yesterday. We basically talked about all the changes that they have been making, the MRI, and what the plan is for the next week & discharge from the NICU.

First thing I want to get out there.... I guess when I got the initial news about the MRI, I was really hoping to get great news or at the very least something definitive. That didn't quite happen, but in my disappointment, I managed to skip over one very positive thing. The MRI did Not show any additional damage. That in itself is a great result that we are Very thankful for.

Yesterday was a big day of changes for Blake. Dr. Su decided to move him to full nipple feeds! This is the main requirement that they need to make in order to graduate from the NICU. With the move to full feeds, Blake no longer needs the feeding tube he had in his nose. Whoo Hooo It's simply wonderful to see that beautiful face without something obstructing our view. So now, Blake just has to do good on his feeding and maintain his breathing.

Another big change is that they took both Jenna & Blake off caffeine. The caffeine gives them a little boost of energy, which helps with breathing and feeding. Although they can go home on caffeine, it would be nice if they were able to handle things without it. They can always pick up that habit later ;). The possible side effect to coming off caffeine is that they could have some apnea while sleeping hard, they could have some labored breathing, and they could have a reduction in feeding. It takes 5-7 days for the caffeine to work it's way out of their lil systems, so we'll see how they react to that over the next few days. IF one or both of the twins don't handle being off caffeine, they can still come home, we'll just have to give them a daily dose of Tha Good Stuff, & they'll have to be on heart & respiratory monitors. The big problem with that is the monitor is not overly sensitive and is prone to frequent false alarms. As you can imagine, this can cause a LOT of stress and anxiety. One option is to bring them home on nasal canula with 100% oxygen. This will offset the need for caffeine to help them breath & maintain their O2 saturation. The downside to this option is that we'll have to have a medical rental company come over to the house and set up large oxygen bottles and they'll have to be on canula, so they'll be tethered to the bottles and have tubes on their face once again. With either option there are trade offs.
Dr. Su doesn't want to do their final evaluation until they've both had enough time for the caffeine to work its way out. So, the earliest they will go home is next Thursday.

One of the many things they have been keeping a close eye on has been their blood pressure.
Jenna's was a tad high for a while, but has recently gone down to normal levels. Blake's is still a bit higher than they would like. Dr. Su said this is a symptom of the lung issues that Blake faced early on. One of the things complicating the readings is that caffeine often raises a preemies blood pressure. Sooooo we are hopeful that as the caffeine wears off, his blood pressure will fall into the normal category. If for whatever reason it does not, he can still go home but he'll need to be seen by a heart specialist that will prescribe him some meds to help keep his blood pressure in the normal range. Besides having to be on medication, the other downside is that he'll have to stay in the hospital for a while longer as they have to gradually adjust the dosage of the medication so they can find the correct dosage to keep his blood pressure at the right level. This process could take up to a week, and he could be on the medication for 6mo to a year. Not the best thing in the world, but if that's one of his only problems, then we can handle that & be grateful that's all he has to deal with.

I don't think we mentioned it, but a couple days ago the twins moved from the high calorie (32 cal) formula to the kind of formula (22 cal) that they would go home on (and is available in stores). Since then we've noticed that they haven't been gaining weight quite as quickly as they had been. In fact, the past two nights they've either dropped a few grams or stayed the same. We have to keep in mind that they are getting less calories, and they are working harder by being on full nipple feeds, they are awake Much more than they ever have been, & off caffeine. So, it's not really too surprising considering all the work their lil bodies are doing.

As a result, here are the current weights.
Jenna: 6lb 12oz
Blake: He's trying to be a good sport and let his big sister catch up. He lost 25g & is now 6lb 15.5oz.

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