Sunday, September 23, 2007

August 11th, 2007


Update on the twin’s progress…

Kinnick and Carver are both getting extra oxygen via nasal canula. Carver is getting 200 – 250cc of extra oxygen. Kinnick is getting about 500cc of extra oxygen.

Carver is still on a maintenance drug to prevent seizures (however, they are not seeing many seizures based on a current EEG). Kinnick’s most recent EEG showed that she is no longer having seizures, so we are weaning her off the maintenance drug. It’s nice to be rid of one more drug!

Brain Hemorrhages:
Carver had his MRI. They were able to prove that the Hemorrhage that he suffered was not a Grade 4. Instead, it was a Grade 3. The difference is that a Grade 4 would indicate that the Hemorrhage went beyond the ventricle walls causing Brain tissue damage. His Grade 3 Hemorrhage stopped within the ventricle wall. The MRI did show the ventricles as still being larger then normal. I’m told this will not cause any additional problems – cerebral fluid is circulating like it is supposed to – no blockage. However, due to the Hemorrhages (he also suffered a Grade 2 Hemorrhage), the cerebral stem is smaller then normal (this will continue to grow as Carver grows). This will impact his Gross motor skills – meaning that he will show delays crawling, walking, riding a bike (balance), throwing a ball, etc. I’m told he is capable of doing these things, but these things will take longer then normal to learn. In addition, the brain (overall) does show some shrinkage. The brain will continue to grow as Carver grows. This will impact Carver’s fine motor skills – meaning that he will show delays in reading, writing, learning, etc. I’m told he is capable of doing these things, but they will also take longer to learn. The neurologist said that if he had to rate Carver’s damage or delays, he would say somewhere between MODERATE/SEVERE (scale being MILD/MODERATE/SEVERE/PROFOUND). So, it could be better and it could be worse. Overall, we were very pleased with their findings. Carver is already getting Physical Therapy (gross motor skills) and Occupational Therapy (fine motor skills). They will add Speech Therapy later. Kinnick is scheduled to receive her MRI on Monday. She suffered a Grade 1 and Grade 2 Hemorrhage at birth. I am told that Grade 1 and 2 Hemorrhages due not typically cause any lasting problems, so we are expecting good results.

Carver had his hearing tested (via BAER test). The test indicated that Carver has a severe hearing loss. Carver will be fitted for hearing aides (to amplify sound) right away. While these may not prove to help, we are required to try these for 6 months in order to qualify for Cochlear implants. I’ve heard many success stories about this implant. One example can be seen/heard at the following website Kinnick had her hearing tested (via BAER test). The test indicated a MILD/MODERATE hearing loss. I have not heard the course of action for her, yet. Her hearing was tested late Friday and I have not had an opportunity to speak to the ENT or Audiologist.

Kinnick’s eyes have started getting worse – the retina is starting to detach. Carver’s eyes are still active, but don’t show much change. The eye doctor has recommended that both babies go to Detroit to be evaluated by an ROP specialist. We will know more on Monday.

Both Kinnick and Carver have been diagnosed with Rickets. This is a brittle bone disease. Their bones can break very easy. Tthis should get better once they have been on full feeds for a while and are getting good nutrition. Carver is showing improvement. Kinnick will take longer to get over the problem since she hasn’t been on full feeds long.

Both babies are tolerating full feeds. They are still very weak, so they have a hard time bottling all of their feeds. The doctor has recommended G-tubes for both babies. The G-tube will be surgically inserting into the stomach and will have a tube (Mickey button (sp)) that will allow me to push (directly into the stomach) any fluids that they are not able to get orally. I will be able to bottle as much of the feeds as possible – this just gives me the ability to insure the babies get proper nutrition and will allow them to go home vs staying in the hospital until they are strong enough to take all feeds (which could be a very long time). This will also help during the coming cold season when the babies lungs are not strong enough to tolerate a cold and still have the energy to feed – keeping us out of the hospital due to dehydration which is common in micro-preemies.

Carver weights 8 lbs 7 oz. Kinnick weights 9 lbs 7 oz. While Kinnick’s weight has not gone down much, she has lost at least a pound of fluid. She still has more fluid to lose, but it appears to be dropping. Hopefully, both babies will weight about the same in the next week or two.

Both babies are starting to act more like full term newborns. The babies have also started getting to know each other – they are now sharing a baby bed. Kinnick appears to be a little jealous of Carver’s hair – I have caught her with her hand in his hair ready to pull. She doesn’t have much hair of her own. Carver isn’t sure what to think of his sister, but doesn’t like sharing rocker time with her. He wiggles and cries until someone else takes her, so he can have the entire rocker to himself. He’s in for a surprise when he finally figures out that he is not an only child (1 of 7). However, he is the baby by about 45 minutes.

I always save the big news for last….. If Carver does not go to Detroit on Monday or Tuesday, he will be sent to Mother/Baby where I will stay with him 24/7 (for at least 3 nights) to learn his machines (Oxygen, Apnea Monitor (in case he stops breathing or his heart rate drops too low), and G-tube feeding. The G-tube has not been inserted, yet. This may delay his release. They do not want to put the G-tube in until we are sure that he is not going to Detroit. If we go to Detroit, they will have the G-tube surgically placed if/when they operate on his eyes. They don’t want to put him under any more then necessary. After I (and the doctors) am comfortable that I can handle Carver and his machines, he will be released to go home. So, you will not see me in the office on Monday. I will either be on my way to Detroit or in a Mother/Baby room at Wesley Hospital. Kinnick should be able to come home shortly after Carver. Everything is dependent on the eye surgery in Detroit.

I will be checking email from home as time permits and will continue to keep everyone posted.

Thank you for all of your kind words, thoughts, and prayers! Thank God for his many blessings!

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