Wednesday, December 26, 2007

December 26th, 2007

Update on eye surgery:

Both babies were approved for a medical transport by air for their additional ROP surgery. They are scheduled for surgery 1/9/07 at William Beaumont Hospital in Royal Oak, MI. I will fly with the babies. We will leave 1/8/07. Hopefully this trip will not be as long as the last. They have scheduled a second surgery for both babies on 1/11/07. As much as I hate to put the babies through more surgery, we really don't have much of a choice if we are going to save their vision. If left untreated, Kinnick will be blind in both eyes and Carver will be blind in at least one eye. Please pray that this is our last trip and that Dr. Trese's group is able to save their vision.

Since this process has been difficult to coordinate, I am going to post the process at the bottom of this page. The process is actually pretty simple - I just didn't know where to begin. Hopefully, this will help someone else if they ever need the same service. I am also going to post the name of the hotel that I stay at while the babies are having eye surgery. The Director of Sales has been very kind to me. I have been able to stay at a Candlewood Suites in Troy, MI at $40.00 a night. This hotel has everything that you could possibly need: A pantry to purchase food, a gym, a laundry facility, fridge, microwave, cook top, dishwasher, and cookware. All of this in a very CLEAN hotel located near an awesome mall, Target, Walmart and anything else you could possibly need. The hospital recommended many others and none compared.

Monday, December 17, 2007

December 17, 2007

Kinnick is home!! She came home yesterday. We are so happy to have her home. She looks so good and is on 1/2 lt oxygen via nasal cannula. We were told to expect her to spend a lot of time in the PICU over the next 4 months due to her bad lungs.

Carver is still doing great. However, he is still constipated. I guess if that is all that is wrong with him, we'll take it.

Big brother (Hayden) enjoyed some time with Carver prior to Kinnick's return home. Can you guess what they were playing with?

We are still working on the trip back to Detroit for more ROP surgery. The eye doctor wanted us this Wednesday or the day after Christmas. Neither of these days are good. We can't go Wednesday because Kinnick just came home and there just isn't enough time to coordinate the trip. I don't want to go the day after Christmas because we would have to be there the day before, which is Christmas. Since I missed 4 birthdays with the last visit to Detroit, I really don't want to miss Christmas. However, we are told that we need to go ASAP (within a week if possible) because Kinnick is not expected to stay well long - lungs. So, as soon as the logistics are figured out, we will be off to Detroit. I'm guessing we will go the first part of January. I'm having a difficult time finding someone to help organize the trip. Driving 15+ hours with 2 babies that require oxygen and an oximeter full time along with one requiring g-tube feeds and suctioning doesn't seem to make sense. The oxygen alone would take up 1/2 of the vehicle and doesn't seem safe in the middle of winter. Plus the battery back-ups on the equipment don't last more then 12 hours at a time after being fully charged. I've talked to the commercial airlines (AA) and it doesn't even sound like they can accommodate my babies needs while on flight. In addition, the fact that the airlines are never on time and ground you for bad whether - not allowing you any of your checked baggage, would not work for us. So, I'm trying to figure out what it would take to get a medical transport approved. We have so many doctors, I'm not even sure which doctor is responsible for writing the medical necessity letter, and the doctors don't even seem to know which one should write the letter. So, when I figure all of this out, I will be sure to post and let others know.

For those that know big brother Hayden, here's his Santa picture....

I'll see what I can do about getting a picture of the whole family posted (all 9 of us!)

Monday, December 10, 2007

December 10th, 2007

Some updates:


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.


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.
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,