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.
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!)
Love,
Shanon
2 comments:
I'm so glad Kinnick is home for now! We will be praying that you can get everything organized for the trip. It is frustrating not to know which doctor does what! We hope you have time to enjoy a Merry Christmas with everyone. We are always thinking and praying for you!
Love,
Neva
Glad your daughter is home! I hope your doctors predictions do not come true about future hospital stays. Hopefully your daughter does not have to go back. I know it is likely, even my 32 weeker has had a few additonal hospital stays after NICU.
I know of someone who gets lifeflights when her son needs services. I just know of her, I can find her email and send it to you?
My name is Cindy by the way. I have a former 32 weeker, that I will not even bother mentioning anymore than that, because he may as well have been full term compared to your twins.
If you would like the email of the person I know of--she has a preemie who has needed many surgeries out of state, with top specialists--I will gladly search my emails for her address for you.
my email is
theorrfamily@charter.net
Cindy
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