Monday, December 10, 2007

December 10th, 2007

Some updates:


Eyes:


Carver's eye evaluation showed that the retina in the right eye has stayed attached. However, the retina in the left eye is no longer attached and is torn, again. He will need to return to Detroit for another eye surgery.


Kinnick's eye evaluation showed that she is blind in her left eye and they do not believe there is anything else that can be done for this eye. The retina in the left eye is no longer attached and is torn like Carver's. This will require an add'l surgery in Detroit. I really hate to have the surgery. This is the surgery that was so painful for Carver. When Carver had the surgery, they told me that if it was Kinnick that needed the surgery, they wouldn't do it. They didn't think she could tolerate the surgery. Both Kinnick and Carver will require this surgery to save their vision. I will know more about the trip in the coming weeks.


RSV:


I'm disappointed to say that Kinnick is back in the Hospital PICU at Wesley. She was home 1 full month when her oxygen requirements started to go up, again. She was saturating at 100 % on 3/4 lt oxygen last weekend. By Tuesday, she was unable to saturate in the 90's at 3/4 lt. We had to increase her to 1 lt. By night, she was up to 1 1/2 lt and still having a difficult time saturating in the 90's. By Friday afternoon, she was on 2 1/2 lt and still not saturating in the 90's. I took her to the pediatrician and they sent her to the Hospital. By the time we got there, she was unable to saturate in the 90's at 3 lt. They put a mask on her and had her on 10 lt within a few hours. By night, they put her on CPAP. She tested positive for RSV. We've had 3 shots to avoid RSV, but still got it. We are told that it shouldn't be as severe. So far, we have avoided being put back on the ventilators. They believe that she has hit her peak and she should start getting better, now. Her poor lungs are just so weak that the simplest cold is life threatening. It just takes one person sneezing with a simple cold to give a 23 weeker RSV. Unfortunately, we have a 2 year old in the house that always has a cold. It is difficult to keep an active 2 year old completely away from a sibling. Hopefully Kinnick will be home by Christmas. Carver appears to be a little more stable and has been able to avoid a cold. He is still on 1/4 lt and saturating in the 90's.


Kinnick 12/09/07 in the PICU with RSV (on CPAP):



Return to Work for Mom:
I was supposed to return to work today. However, with Kinnick in the hospital, I just couldn't do it. It was a real wake-up call. I really feel like the twins need me at home at least another 6 months, or until we are out of the winter months. They have so many needs that need to be monitored. I don't feel like these needs will be met if I'm working 8-10 hrs a day outside of the home. I am fortunate enough to get a nurse in the home for 10-12 hr/day. However, there are many days that it takes two adults to care for the babies in order to meet their needs. A normal healthy baby can cry for awhile without harm. If Kinnick cries for even a couple of minutes, she desaturates as low as the 40's. You have to drop what you're doing to care for her. If you are feeding Carver, this could mean that he doesn't get fed for another 30 min to an hour. With his poor eating habits, it doesn't make sense to ignore his feeds. This is just one of the many times that 2 people are necessary. In addition, with everything that is going on with the two babies, it is difficult for one person to do everything and still be able to do the extras that are crucial to the developmental success of the babies - like Physical Therapy. I feel like I need to be home to insure that all of this is being done. The babies have fought very hard to be here today. I want them to be as successful as possible.
Feedings and weight gain:
Carver finally gained some weight. He is up to 12 lb 12 oz. He is now eating much better then before. We are now able to get him to take about 24 oz/day. Before, we were lucky to get him to take 10 - 15 oz/day. We have started weaning him off the Special Care 24 formula. We just couldn't afford the $800/month. We started by mixing the Special Care 24 formula 50/50 with an Enfamil Enfa Care Lipil 22 calorie formula. We are now mixing it 75/25 and he is still taking it. We have noticed that he is more constipated. Hopefully, we can get something to help the constipation so that he will continue eating and gaining weight. Kinnick also gained weight before going back to the PICU. She was up to 13 lb 8 oz.
Hearing:
Carver gets his first set of hearing aids this Wednesday. We have not been able to get Kinnick in to be evaluated, yet. We are waiting for her to be more stable before having her sedated. She didn't do well when she was sedated for the eye evaluation. In fact, the hospital tried to admit her over night. I was able to convince them to send her home. Anytime we can avoid the hospital, we do. She was fine once she got home. I think the hospital stresses her out.
I hope everyone has a wonderful Christmas. We look forward to having our little Kinnick home in time for Christmas. Please pray that our little girl gets well soon and stays well. She needs to be well long enough for her lungs to heal and grow.
Thank you for all of your thoughts and prayers,
Shanon

5 comments:

Anonymous said...

Shanon, I'm so sorry to hear about the babies eyes and about Kinnick getting RSV! What a bummer! I bet you are so sick of visiting Wesley by now. We will be praying that there are no more sicknesses in your house by Christmas time! We are in awe of how you keep fighting and caring for your children. You are a great mother!
Love,
Neva

Shelley said...

Hello,
I have been following the babies updates for awhile now and was so upset to hear about Kinnick getting RSV. I love the pictures of your babies they are so adorable and I am praying that everyone will be home for Christmas! I wish you all a Very Merry Christmas! Stay strong...
Shelley
(Olivia's Aunt)

Anonymous said...

Kinnick and Carver are so cute! It's hard to hear how hard they've struggled. They are so lucky to have you as their mother to help them through this. My thoughts are with your family and I hope Kinnick gets better soon!

Kerry
(Jodi, Ryan and Olivia's friend)

Kellars Mommy said...

I found your blog through another preemie blog..I am sorry to hear that Kinnick has caught rsv..My Kellar had it in Oct and although he is older it was still rather unsettling..Hopefully she is now on the upswing and will be able to come home soon..Your little ones are very precious..

Anonymous said...

Shanon- you and your family are in my thoughts and prayers. Please let me know what you find out about the transportation- I have a friend that had to do this for her premie. I will try to get the information from her. Merry Christmas. Will you also e-mail me your home address so I can send you a Christmas card.

Lvoe, Kelly Hester Shortley