"Fear not, for I have redeemed you; I have called you by name: you are mine. When you pass through the water, I will be with you: in the rivers you shall not drown...You are precious in my eyes and glorious." Isiah 43:1-2,4
Today has been a rough one for Kyle, at least as far as his oxygen levels go. He has been on about 60% concentration (the goal is 21%) most of the day. The doctors can't find any reason in particular for the increase, just that some days are better than others for Kyle. For the first time in awhile, I was not allowed to Kangaroo with Kyle because he is not doing very good. Hopefully tomorrow will be a better day.
Kyle is continuing on his antibiotics, although the doctors are not convinced that his infection is a "true infection" such as the bouts with pneumonia he had earlier. Instead, they think he is fighting more of a colonization of germs on his endotracheal tube (breathing tube). They said that these tubes are just a breeding ground for infection/germs...we are putting a foreign object down his throat where it is moist and dark. The doctor does not really expect the growth on the tube to go away, at least until Kyle is off the ventilator. The problem is, the infection makes it harder for him to get off the ventilator. Another catch 22 with the ventilator.
This week Kyle began working with an occupational therapist, who will now be meeting with him three times a week. His therapist is so nice! She checked his muscle tone and reflexes and said that he is doing perfect for a baby his age. Today she showed me different exercises that I can do with him that will offer him comfort, mostly things that represent containment, similar to swaddling a baby. In the picture above Kyle is swaddled and then has a bean bag pillow on him that is supposed to offer gentle pressure, similar to as if he was still in the womb. She also brought him a medical "gel pillow" for his head. Joe jokes that Kyle has a "toaster head" meaning that his head is thin enough to fit in a toaster. Kyle does not like to lay on his back, and when he does, his neck is not strong enough to support his head, so Kyle's head is constantly on it's side. Since Kyle is still developing, the shape of his head has sort of developed thin and flat. Anyways, the therapist brought him a special pillow to help with his "toaster head."
Although I sometimes sound frustrated, all in all, we are very hopeful that everything will be fine with Kyle. We are so optimistic we have even begun to work on the nursery! When we left for vacation I was only 22 weeks pregnant and never imagined I would be coming home with a baby! As far as his nursery goes, the only thing we had done before vacation was to order his crib, and when my water broke so early, we cancelled that. If something happened and he didn't make it, it would be to painful of a reminder to have his unused crib at home. Anyways, now that things have calmed down we are realizing we have a baby but none of the usual baby gear! To that end, Joe painted the nursery last week, and I have begun looking online at stuff to decorate it with, we have decided to go with a jungle/safari theme. The day I was released from the hospital, we went to Babies R Us to buy a breast pump. Joe and I were so scared for Kyle's future, we did not look at anything but pumps. Imagine having a baby, but being to afraid to buy him clothes, because he may die before ever getting the chance to wear them. We have come such a long way since then...GOD IS GOOD and has certainly blessed us!!!
Today has been a rough one for Kyle, at least as far as his oxygen levels go. He has been on about 60% concentration (the goal is 21%) most of the day. The doctors can't find any reason in particular for the increase, just that some days are better than others for Kyle. For the first time in awhile, I was not allowed to Kangaroo with Kyle because he is not doing very good. Hopefully tomorrow will be a better day.
Kyle is continuing on his antibiotics, although the doctors are not convinced that his infection is a "true infection" such as the bouts with pneumonia he had earlier. Instead, they think he is fighting more of a colonization of germs on his endotracheal tube (breathing tube). They said that these tubes are just a breeding ground for infection/germs...we are putting a foreign object down his throat where it is moist and dark. The doctor does not really expect the growth on the tube to go away, at least until Kyle is off the ventilator. The problem is, the infection makes it harder for him to get off the ventilator. Another catch 22 with the ventilator.
This week Kyle began working with an occupational therapist, who will now be meeting with him three times a week. His therapist is so nice! She checked his muscle tone and reflexes and said that he is doing perfect for a baby his age. Today she showed me different exercises that I can do with him that will offer him comfort, mostly things that represent containment, similar to swaddling a baby. In the picture above Kyle is swaddled and then has a bean bag pillow on him that is supposed to offer gentle pressure, similar to as if he was still in the womb. She also brought him a medical "gel pillow" for his head. Joe jokes that Kyle has a "toaster head" meaning that his head is thin enough to fit in a toaster. Kyle does not like to lay on his back, and when he does, his neck is not strong enough to support his head, so Kyle's head is constantly on it's side. Since Kyle is still developing, the shape of his head has sort of developed thin and flat. Anyways, the therapist brought him a special pillow to help with his "toaster head."
Although I sometimes sound frustrated, all in all, we are very hopeful that everything will be fine with Kyle. We are so optimistic we have even begun to work on the nursery! When we left for vacation I was only 22 weeks pregnant and never imagined I would be coming home with a baby! As far as his nursery goes, the only thing we had done before vacation was to order his crib, and when my water broke so early, we cancelled that. If something happened and he didn't make it, it would be to painful of a reminder to have his unused crib at home. Anyways, now that things have calmed down we are realizing we have a baby but none of the usual baby gear! To that end, Joe painted the nursery last week, and I have begun looking online at stuff to decorate it with, we have decided to go with a jungle/safari theme. The day I was released from the hospital, we went to Babies R Us to buy a breast pump. Joe and I were so scared for Kyle's future, we did not look at anything but pumps. Imagine having a baby, but being to afraid to buy him clothes, because he may die before ever getting the chance to wear them. We have come such a long way since then...GOD IS GOOD and has certainly blessed us!!!
As always our sincerest appreciation for all the prayers and support!
Much Love,
Jennifer, Joe, Madison and Kyle
1 comments:
Jennifer, You may feel discouraged sometimes but it rarely, if ever, shows in your writing. You have seemed remarkably hopeful from the beginning despite the odds and the overwhelming circumstances. It is clear Kyle still has obstacles to conquer but it seem as though he has met every challenge so far. He is a fighter. And, you are filled with faith! Laura
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