Ryan is 4 pounds 10 ounces today. He is still on full feedings and they are adding a more calories to his milk to help him grow faster. Of course the extra calories make my breast milk more like formula and it upsets his tummy. He is kind of uncomfortable after they feed him.
He was doing great with his oxygen. They had him down to 2 liters of high flow oxygen at 30-35 % of oxygen going through his nasal cannula. He has done good with that for 2 days and today, he was up to 50% oxygen. They move him back up to 3 liters of high flow and his oxygen needs started to go down right away. Hopefully he will take a little rest with the higher oxygen and be ready to go down again.
They had to give him a blood transfusion 2 days ago. They were hoping that would help his oxygen needs go down. He was low on red blood cells and they are the cells that carry oxygen in the blood. The theory was that if he had more red blood cells his body could better oxygenate and he would need less oxygen. So far that hasn't been the case but maybe it will all kick in soon.
I am starting to see the light at the end of the tunnel. They haven't given me any kind of time frame but if things keep going like they are we should be able to bring him home in 3 or 4 weeks, at least that is what I think. I could be wrong, but I think by then he will be able to bottle feed and he should be on low enough oxygen we can bring him home on O2 if needed. In the meantime I am working on his bed room. I got it all painted and I am working on putting it all together. I should be done in another day or two so whenever Ryan is ready to come home he will have a place to go.
Thursday, February 19, 2009
Thursday, February 12, 2009
We seem to be turning a corner!
Ryan is doing great! He seems more and more like a normal baby everyday. He is getting stronger and bigger. 4 pounds 5 ounces today.
Unless he starts to have problems, he will be at full feedings tomorrow. He will be getting 32 mls of food every 3 hours. Once he is on full feedings they will take out his PICC line (IV). The doctor has that planned for tomorrow, again barring any complications with his feedings.
He had an eye exam and the ophthalmologist said his eyes were almost completely mature which he almost never sees at this age in a preemie. Yeah!! Hopefully that will mean no vision problems.
The last report I got on his brain bleeds was that they were resolving on their own and they would follow up with an ultrasound at approximately 1 month. I asked the nurse today if that was scheduled, he is 1 month old today and it wasn't. She checked with the doctor though and they have it ordered so hopefully I will know the results tomorrow.
He is still having trouble with his lungs. They only have him on High Flow O2 again which is good. So far he has been staying between 30 and 38% oxygen. That is much better then where he was. He is even doing well breathing while lying on his back, which has been an issue for him. He has to stay below 25% oxygen for an extended period before they will drop him down from 4 liters to 3 liters high flow oxygen. Once he is on 3 liters and can keep his oxygen needs down then they will go to 2 and 1 liters. After that he should be able to go off the oxygen all together.
Overall he is doing really well right now. Of course just when I get excited about his progress he makes a step backwards, but even if he does hopefully he can bounce back quickly.
At home I am getting ready for Ryan to come home. I have been painting his room. I have curtains to make and new things to hang on the wall. I have another day of painting at least and then I will be working on getting it all together. Then I have Tyler's room to finish as well. We are decorating his room with Mickey Mouse so I have another coat of red paint (it's called Mickey's Pants) to put on and then I should be able to do some finish work in there and I will have both their rooms put together. Or at least closer to being put together. I just know I have to finish their rooms while I have no little one's at home because when they come back I won't have any time.
Keep praying for Ryan's lungs and brain. Please pray for Alex and Tyler as well. I think Alex feels abandoned right now, he is having some behavior issues at Nana and Papa's house. Please pray they know they are loved by us and that they can feel at peace with what is going on.
Thank you!!
Unless he starts to have problems, he will be at full feedings tomorrow. He will be getting 32 mls of food every 3 hours. Once he is on full feedings they will take out his PICC line (IV). The doctor has that planned for tomorrow, again barring any complications with his feedings.
He had an eye exam and the ophthalmologist said his eyes were almost completely mature which he almost never sees at this age in a preemie. Yeah!! Hopefully that will mean no vision problems.
The last report I got on his brain bleeds was that they were resolving on their own and they would follow up with an ultrasound at approximately 1 month. I asked the nurse today if that was scheduled, he is 1 month old today and it wasn't. She checked with the doctor though and they have it ordered so hopefully I will know the results tomorrow.
He is still having trouble with his lungs. They only have him on High Flow O2 again which is good. So far he has been staying between 30 and 38% oxygen. That is much better then where he was. He is even doing well breathing while lying on his back, which has been an issue for him. He has to stay below 25% oxygen for an extended period before they will drop him down from 4 liters to 3 liters high flow oxygen. Once he is on 3 liters and can keep his oxygen needs down then they will go to 2 and 1 liters. After that he should be able to go off the oxygen all together.
Overall he is doing really well right now. Of course just when I get excited about his progress he makes a step backwards, but even if he does hopefully he can bounce back quickly.
At home I am getting ready for Ryan to come home. I have been painting his room. I have curtains to make and new things to hang on the wall. I have another day of painting at least and then I will be working on getting it all together. Then I have Tyler's room to finish as well. We are decorating his room with Mickey Mouse so I have another coat of red paint (it's called Mickey's Pants) to put on and then I should be able to do some finish work in there and I will have both their rooms put together. Or at least closer to being put together. I just know I have to finish their rooms while I have no little one's at home because when they come back I won't have any time.
Keep praying for Ryan's lungs and brain. Please pray for Alex and Tyler as well. I think Alex feels abandoned right now, he is having some behavior issues at Nana and Papa's house. Please pray they know they are loved by us and that they can feel at peace with what is going on.
Thank you!!
Saturday, February 7, 2009
Long time no blog
I realized today that I forgot to blog. Then today was a bad day for Ryan so that makes me want to blog about it anyway. I guess it is easier to blog when things are bad then good.
Since my last blog, Ryan has been on high flow oxygen. His oxygen requirement has been between 40 and 45% most of the time. He has still been eating. He has been tolerating his feedings pretty well. He has gotten bumped up to 8 mls every 3 hours. So far that seems to be working well. Of course he should be eating about 28 mls every 3 hours for his size. 8 down 20 to go.
While things hadn't been progressing forward we weren't going back either. The past 2 days however Ryan has been slowly going up on his oxygen requirements. He was having a harder time breathing, they think because he has fluid in his lungs. He has been gaining a lot of weight, more weight then he should be gaining from food so they assume it is fluid. His chest x-rays are still cloudy, which is also conclusive with fluid in the lungs. They have given him Lasix to help his body rid it's self of fluid and that has helped some, but it has still been hard for him to breath.
Today he was on 60% oxygen so the doctor decided to put him on CPAP again. My poor little baby hates being on CPAP. When I got to the hospital today he had only been on CPAP about 30 minutes. His oxygen was down in the 40's at that time. In the next 30 minutes they put him on his tummy and his oxygen went down in to the 30's. Then he went back up into the 40's and back down. Then he woke up, did I mention he hates CPAP. He cried and cried until he had worn himself out and went back to sleep. I decided at that point to leave while he was asleep and his oxygen levels were good. I hate to leave when he is upset or having trouble. I knew if I waited until 6 pm (which was in 45 minutes) that things wouldn't be as good and I would be upset to leave. They kick us out of the NICU at 6 pm for shift change.
Wow so much has happened since I last blogged and today it was all gone. They were dressing Ryan in clothes and swaddling him. He seemed to really like that but they stopped today when he was breathing so hard. They had to be able to see his body.
I was holding Ryan. At first I held him in the crook of my arm on his back and he responded well. After 2 or 3 times though, he started to do very poorly with that. His stats got very low and at one point he was at 90% oxygen while I was holding him. It was very nerve racking for me and I was ready to quit. The next day Ryan had a new nurse. She had heard how badly the holdings were going. I told her I was going to quit holding him for a while until he got older. She said she hadn't seen it for herself and she wanted to see if she could fix things so they went better. This was actually really nice to hear. None of the other nurses seem to care and were quick to want me to put him back when things didn't go well. She wondered if I held him on my chest up towards my shoulder (like you would to burp a baby) if that would help. Since he is so happy lying on his chest this would be a similar position. I had wondered the same thing but the other nurses didn't seem to share my curiosity. Well long story short, it worked great!! Ryan's stats stayed up, he didn't require more oxygen and he really seem to enjoy it. He would wake up and stare at me while I held him. After a while he would fall sound asleep. I can't tell you what a wonderful feeling this was.
Of course now it is over for a while. His nurse today has no interest in letting me hold him. I don't blame her because he was having breathing problems, but when he got upset over the CPAP I think holding him would have been exactly what he needed.
So I am back to a naked baby I can't hold. I don't want to put my needs before his. I don't have to hold him, it is more important to me that he gets stronger and his lungs mature. I don't care if he is dressed in clothes he is just as cute with out them, but is was so nice for a breif time to feel like he was a real baby. Too feel like we were getting closer to having him home. I know we will be back there again some day, I was just hoping we wouldn't have to go backwards on these things.
Since my last blog, Ryan has been on high flow oxygen. His oxygen requirement has been between 40 and 45% most of the time. He has still been eating. He has been tolerating his feedings pretty well. He has gotten bumped up to 8 mls every 3 hours. So far that seems to be working well. Of course he should be eating about 28 mls every 3 hours for his size. 8 down 20 to go.
While things hadn't been progressing forward we weren't going back either. The past 2 days however Ryan has been slowly going up on his oxygen requirements. He was having a harder time breathing, they think because he has fluid in his lungs. He has been gaining a lot of weight, more weight then he should be gaining from food so they assume it is fluid. His chest x-rays are still cloudy, which is also conclusive with fluid in the lungs. They have given him Lasix to help his body rid it's self of fluid and that has helped some, but it has still been hard for him to breath.
Today he was on 60% oxygen so the doctor decided to put him on CPAP again. My poor little baby hates being on CPAP. When I got to the hospital today he had only been on CPAP about 30 minutes. His oxygen was down in the 40's at that time. In the next 30 minutes they put him on his tummy and his oxygen went down in to the 30's. Then he went back up into the 40's and back down. Then he woke up, did I mention he hates CPAP. He cried and cried until he had worn himself out and went back to sleep. I decided at that point to leave while he was asleep and his oxygen levels were good. I hate to leave when he is upset or having trouble. I knew if I waited until 6 pm (which was in 45 minutes) that things wouldn't be as good and I would be upset to leave. They kick us out of the NICU at 6 pm for shift change.
Wow so much has happened since I last blogged and today it was all gone. They were dressing Ryan in clothes and swaddling him. He seemed to really like that but they stopped today when he was breathing so hard. They had to be able to see his body.
I was holding Ryan. At first I held him in the crook of my arm on his back and he responded well. After 2 or 3 times though, he started to do very poorly with that. His stats got very low and at one point he was at 90% oxygen while I was holding him. It was very nerve racking for me and I was ready to quit. The next day Ryan had a new nurse. She had heard how badly the holdings were going. I told her I was going to quit holding him for a while until he got older. She said she hadn't seen it for herself and she wanted to see if she could fix things so they went better. This was actually really nice to hear. None of the other nurses seem to care and were quick to want me to put him back when things didn't go well. She wondered if I held him on my chest up towards my shoulder (like you would to burp a baby) if that would help. Since he is so happy lying on his chest this would be a similar position. I had wondered the same thing but the other nurses didn't seem to share my curiosity. Well long story short, it worked great!! Ryan's stats stayed up, he didn't require more oxygen and he really seem to enjoy it. He would wake up and stare at me while I held him. After a while he would fall sound asleep. I can't tell you what a wonderful feeling this was.
Of course now it is over for a while. His nurse today has no interest in letting me hold him. I don't blame her because he was having breathing problems, but when he got upset over the CPAP I think holding him would have been exactly what he needed.
So I am back to a naked baby I can't hold. I don't want to put my needs before his. I don't have to hold him, it is more important to me that he gets stronger and his lungs mature. I don't care if he is dressed in clothes he is just as cute with out them, but is was so nice for a breif time to feel like he was a real baby. Too feel like we were getting closer to having him home. I know we will be back there again some day, I was just hoping we wouldn't have to go backwards on these things.
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