Sunday, September 23, 2007

June 1st, 2007

Hello all,

I wanted to thank everyone again for all of your thoughts and prayers. We are truly blessed with wonderful friends.

Coming back to work was hard, but the babies made it a pleasant week. They both had a great week…

On my first day back to work (Friday, May 25th), much to my surprise, the Neonatologists decided to switch Carver to a conventional ventilator. Well, he lasted about 2 ½ hrs and had to be put back on the High Frequency Ventilator. This was very disappointing. I hoped that he would be able to make the leap. After evaluating the situation, the Neonatologists decided to spend a couple more days weaning down Carver’s vent needs. After coming down slightly on his vent settings, they switched Carver back to a conventional ventilator on Saturday. To this day, he is still on the conventional ventilator and is doing GREAT! His oxygen needs have gone down to around 50-60%. His vent settings are very close to Kinnick’s setting, and they are continuing to lower his setting. Carver’s machine is set at an air pressure of 26/7 with a rate of 25 breaths per minute. Kinnick’s machine is set at an air pressure of 26/6 and a rate of 21 breaths per minute. She is requiring around 40% oxygen. The next step is to get both of them on CPAP (Continuous Positive Air Pressure). This is still considered a ventilator, but isn’t not nearly as hard on the lungs. This will just provide a constant stream of air. To make this leap, the twins will need to be at an air pressure no greater then 22/5 with a rate of 20 breaths per minute. However, they would prefer to move them when they reach an air pressure of 16/4 and a rate of 10 breaths per minutes (these are considered excellent numbers). This could take a few days or several weeks.

Kinnick’s brain hemorrhages have completely resolved. Carver’s grade 4 hemorrhage will take months to resolve. For a while, Carver’s left and right ventricles were both building fluid. This typically indicates that the hemorrhage has grown to a point that it is completely blocking spinal fluid from flowing to the brain. Free flowing fluid is necessary for good motor skills. They believe the level of fluid has reached it’s peak, so we’re hoping the size of the ventricles will start to shrink along with the hemorrhage. This has increased Carver’s odds for Cerebral Palsy to greater then 75%. However, the neural surgeon appears to be very optimistic about the outcome. I hear that he is the type to hold nothing back, so the fact that he has only had positive things to say is reassuring of a good outcome for Carver. They will continue to monitor Carver’s hemorrhages every other week.

All 23 weekers will experience seizures. Carver and Kinnick are both on maintenance drugs to prevent seizures. We haven’t seen any seizure activity for a few weeks. They will continue to be on the maintenance drugs for quite some time – easily a year or longer.

Carver has been experiencing problems maintaining a good heart rate – his is low. Because of this, an echogram was done on his heart to verify that it is working properly and not damaged. The results came back that he had a perfectly normal heart. This is much better news then expected. They now believe the low pressures are related to the excess fluid gains that he has had and the amount of sedation drugs that he has been on. The sedation is important because he is easily agitated. When he is agitated, he requires more help from the ventilator. The more help he gets from the ventilator, the more damage his lungs sustain. It’s a vicious circle. So, we have lowered his sedation doses and spread them out. Hopefully, he can be weaned and his blood pressure will go up.

Another big hurdle is feedings. They start and stop feedings all of the time. Carver has had very little feedings. In fact, he’s never made it past about 1/3 of an ounce at feedings. Currently, he is not feeding due to the blood pressure meds that he is on. Once he is off the blood pressure meds, they’ll start feeds again. Kinnick suffered some intestinal blockage and lost her feeding for 3-4 wks. She is now back on feedings and is up to about ½ ounce per feeding. A full feeding would be 1 ounce.

Both are currently weighing in at about 4 lbs 3 oz. They look so big!

Both are learning to maintain their own temperature instead of being dependent on a temp controlled bed – wish I had one of those. They look so cute in their preemie clothes. Kinnick is doing so good that I got to hold her for the first time over my lunch hour today. Wow, that made my week! It’s been a long wait.

We continue to be very blessed. At an expected survival rate of 17-25%, we have been very fortunate to maintain 100%. Please continue to pray for our little miracles – they still have a long way to go.

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