So sorry it has been a while since I have updated. It has been quite a roller coaster ride the last few weeks. Very emotional for this mommy! We went from being in an open crib to back in a radiant warmer bed so they could watch him better. He started having more events more often. We have stopped and started feedings several times and as of right now they are not feeding him.
Earlier this week they started him on a second seizure medicine to help control his break through seizures. The reason they stopped his feds is because he has really bad reflux and with him still dropping his heart rate and oxygen level due to seizures they wanted to focus on fixing one thing at a time. It's also bad to feed him when his bowel isn't getting enough oxygen. (When he has events his body naturally sends the oxygen to his brain and heart and it pulls it away from his bowels and if that happens enough when he is being fed it can perforate his bowel.)
For several weeks now I have noticed that when he has some of his episodes he squirms around, makes a grunting noise and then holds his breath. Today we had a new nurse and I mentioned it to her as well. "I said he does this every time. I don't even have to look at the monitor to know he will have an event." She said "every time"? And I said yes. She asked if he had ever been seen by an ENT doctor and he has not. She thought he might have a problem with his throat. I asked if she would bring it up in rounds today and she said he would. When we went back at 11 our favorite Neo Dr. was examining him and agreed with our nurse that he might have Laryngomalacia which is when his larynx is floppy and it will sometimes close off his throat and cause him not to breath for a few seconds. They agreed that he needed to be seen by ENT. The ENT doctor was able to come by this afternoon and did a scope of Jaxson's throat and confirmed that he does have a mild form of the Laryngomalacia. Since it's a mild form he doesn't need to have surgery but it does explain why he is having so many small events. He still has seizures but not all of his events are seizure related. The treatment unfortunately is for him to grow out of it which can take several months but we think this is good news.
Jaxson also had a heart ultrasound today because they thought they heard a murmur but it turns out he just has an extra blood vessel growing off his heart. This is also very normal and not considered a big deal he will just have to be checked again in 3 months.
What we are focusing on now is regulating his seizure meds and getting the big events where he lowers his heart rate under control, until that happens they will not start feeding him. When we do start feeding him it could take several weeks for him to learn to eat from a bottle 8 times a day. We still have quite a long road ahead of us.
Today was a better day and we are hoping for several in a row (we need them) we have had too many rough days to count lately and we need a little rest from all the drama.
Oh, and my 2lb 9oz newborn now weighs 5lbs 14oz!!! He will be 2 months old on Monday.
Thanks for every ones continued support and prayers. We feel them!
Friday, April 29, 2011
Wednesday, April 13, 2011
Jaxson Update 4/13/11
Jaxson has continued to do really well since my last update. He has stayed off the CPAP and is on the lesser of the two Nasal Cannula's. He has had fewer episodes and is starting to be awake more often. He was even able to "take" his first bottle yesterday.
He looked like he wasn't sure what to do with it. He did take a little of the formula but not much. They said it was normal for him to be unsure of it for a few times. He has so many things put in his mouth and to him most of them have been bad so it will take a while to teach him this one is good. I can also try to start breastfeeding him very soon.
My time at home was good. I snuck in a haircut and went to see my doctor. All is well for me, just have to go back on a little bit of blood pressure meds since I'm still a little high.
Chris and my friend Lisa did a wonderful job of painting the nursery. It looks very pretty. I can't wait to finish setting everything up for our "big boy."
Thanks again for every one's prayers, they are definitely felt.
Love you all,
Kasey
He looked like he wasn't sure what to do with it. He did take a little of the formula but not much. They said it was normal for him to be unsure of it for a few times. He has so many things put in his mouth and to him most of them have been bad so it will take a while to teach him this one is good. I can also try to start breastfeeding him very soon.
My time at home was good. I snuck in a haircut and went to see my doctor. All is well for me, just have to go back on a little bit of blood pressure meds since I'm still a little high.
Chris and my friend Lisa did a wonderful job of painting the nursery. It looks very pretty. I can't wait to finish setting everything up for our "big boy."
Thanks again for every one's prayers, they are definitely felt.
Love you all,
Kasey
Sunday, April 10, 2011
Jaxson Update 4/10/11
Well after a very long week we received the good news that we were hoping and praying for on Friday. Jaxson does NOT have the bad virus and his seizures show all signs of just being preemie seizures. On Saturday Jaxson was even switched from the CPAP to the nasal cannual and is still on it as I write this. He is doing really well on it so far. He has some mucus that he has been coughing up and they have been sucking out that makes his pulse-ox go down when he is trying to get it up but as of tonight his lungs sound a lot better!
When they weighed him tonight he is already up to 4lbs 3oz and he measured 17 inches long! He is really starting to look like a little boy. They are also feeding him again and he is up to 17mls.
I'm so glad we had a good weekend. Chris was able to hold him several times and I am actually at home for the first time in 5 weeks tonight for one night (maybe two depending on how well Jaxson is tomorrow). My mom is "babysitting" Jaxson for us and was able to hold him for the first time. She loved every minute of it.
The nurse told my mom tonight that if he keeps progressing we may even be able to begin bottle feedings next week. I'm not going to get my hopes up too much but I'm really hoping we can get him home in the next 4 weeks!!
When they weighed him tonight he is already up to 4lbs 3oz and he measured 17 inches long! He is really starting to look like a little boy. They are also feeding him again and he is up to 17mls.
I'm so glad we had a good weekend. Chris was able to hold him several times and I am actually at home for the first time in 5 weeks tonight for one night (maybe two depending on how well Jaxson is tomorrow). My mom is "babysitting" Jaxson for us and was able to hold him for the first time. She loved every minute of it.
The nurse told my mom tonight that if he keeps progressing we may even be able to begin bottle feedings next week. I'm not going to get my hopes up too much but I'm really hoping we can get him home in the next 4 weeks!!
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| Proud Daddy! |
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| Before he had his CPAP taken off. |
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| His monkey hat from his big sister, Madison. |
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| Cuddling with Momma. |
Monday, April 4, 2011
Jaxson Update 4/4/11
Last night we got a call at about 12:30am that they were going to intubate Jaxson. They said due to him having so many episodes and that he was also choking on his saliva that he was regurgitating from his stomach due to the CPAP they wanted to be cautious and give him a break from working so hard. This was very hard for us to take because it's like taking several steps back. I stayed up until they were done working on him and talked to the nurse about 3am to make sure he was ok, slept a few hours and then called at 6 to check on him again. They said he was resting and handling the ventilator well.
Chris woke up early and drove back up here to be with me and Jaxson since we didn't really know what was going on. We went up to the hospital at 9am but had to wait an hour to see him since they were doing blood work and the doctors were doing their rounds. It was very hard for me to see him on the ventilator and took me a few minutes to walk up to him. Of course the tears just started rolling but I knew I needed to pull it together for my son. The doctor came up and talked to us for a few minutes and showed us how many episodes he had been having the night before and said they were still running tests. We spent a little longer with Jaxson and then went to a room down the hall in the hospital to rest since neither of us had really slept. When I went back to sit with Jaxson a little while later they said the results of his brain scan were back and the doctor wanted to talk with us.
The results from the test showed that Jaxson had been having small seizures. Of course this was very scary to hear. He said it could be caused by one of two things. One, it's just a normal preemie thing or two, he could have a very serious virus. The hard part it is takes 5 days for the results to come back to find out if he has that virus.
For now they have stopped his feedings and are keeping him on the ventilator. They have started anti-viral medication just to be safe and have started him on anti-seizure medication as well.
The one good thing today was that I spoke with another couple who's son is in the NICU as well and the same thing happened to them. They said it was very scary to hear but their son didn't have the virus and was doing just fine.
Jaxson is still doing good on the ventilator and he still kicks and squirms when bothered and that's a good sign. When we sit with him we are trying to talk to him and tell him we are there with him and that he is doing a good job.
I never dreamed this would be so hard, with all the emotions it is totally and completely exhausting and I can't believe it's been 4 weeks since Jaxson was born. Today I walked out of the NICU for about the 4th time and thought, "this almost feels like a dream." I feel like I'm walking around in a haze, in my own dream not really aware of the rest of the world around me.
Hopefully tomorrow will be a better day. Your prayers and support are very much appreciated.
A special thanks to both of our companies for being so understanding and supportive.
Chris woke up early and drove back up here to be with me and Jaxson since we didn't really know what was going on. We went up to the hospital at 9am but had to wait an hour to see him since they were doing blood work and the doctors were doing their rounds. It was very hard for me to see him on the ventilator and took me a few minutes to walk up to him. Of course the tears just started rolling but I knew I needed to pull it together for my son. The doctor came up and talked to us for a few minutes and showed us how many episodes he had been having the night before and said they were still running tests. We spent a little longer with Jaxson and then went to a room down the hall in the hospital to rest since neither of us had really slept. When I went back to sit with Jaxson a little while later they said the results of his brain scan were back and the doctor wanted to talk with us.
The results from the test showed that Jaxson had been having small seizures. Of course this was very scary to hear. He said it could be caused by one of two things. One, it's just a normal preemie thing or two, he could have a very serious virus. The hard part it is takes 5 days for the results to come back to find out if he has that virus.
For now they have stopped his feedings and are keeping him on the ventilator. They have started anti-viral medication just to be safe and have started him on anti-seizure medication as well.
The one good thing today was that I spoke with another couple who's son is in the NICU as well and the same thing happened to them. They said it was very scary to hear but their son didn't have the virus and was doing just fine.
Jaxson is still doing good on the ventilator and he still kicks and squirms when bothered and that's a good sign. When we sit with him we are trying to talk to him and tell him we are there with him and that he is doing a good job.
I never dreamed this would be so hard, with all the emotions it is totally and completely exhausting and I can't believe it's been 4 weeks since Jaxson was born. Today I walked out of the NICU for about the 4th time and thought, "this almost feels like a dream." I feel like I'm walking around in a haze, in my own dream not really aware of the rest of the world around me.
Hopefully tomorrow will be a better day. Your prayers and support are very much appreciated.
A special thanks to both of our companies for being so understanding and supportive.
Sunday, April 3, 2011
Jaxson Update 4/3/11
Jaxson had a rough day yesterday. He had another PICC line put in and to do so they gave him some morphine, therefore he was pretty out of it. When he gets tired like that it's harder for him to breathe so he had more episodes. They pretty much kept him on his CPAP all day and we didn't get to hold him.
Chris' dad and step-mom came for a visit and took us to lunch. They did get to see Jaxson for about 15 min each. Chris and I had dinner at the new Houlihans in Springfield and I think its one of my new favorite restaurants!
This morning we got to the hospital at 9am and found out Jaxson had a pretty good night so we were able to hold him. Hopefully the rest of the day will be good too!
Chris' dad and step-mom came for a visit and took us to lunch. They did get to see Jaxson for about 15 min each. Chris and I had dinner at the new Houlihans in Springfield and I think its one of my new favorite restaurants!
This morning we got to the hospital at 9am and found out Jaxson had a pretty good night so we were able to hold him. Hopefully the rest of the day will be good too!
Friday, April 1, 2011
Jaxson Update 3/29/11
I'm sorry it has been a few days since my last post. We had a busy weekend with several visitors and then I didn't have internet access in my room at the Ronald McDonald house.
Last Friday Jaxson started having a few more episodes so I only got to hold him once and Chris didn't get to hold him at all. My best friend Lisa come up to visit and was able to see Jaxson for a little bit and then we got to go to dinner together. It was nice to have some girl time.
Saturday was a rough day. We still were not able to hold Jaxson but were able to spend time with him and touch him. They also moved his bed which was very hard on me. We were on a quiet row with only one other baby and they moved him to a row with 4 other babies and a lot more noise. I like to have my quiet time with him so this took some adjusting. Chris' mom and step-dad also came for a visit and were able to see Jaxson for a short time. They took us to lunch and saw Jaxson one more time and then went back home. it was good to be able to spend a little time with them. Madison was here all weekend too and she enjoyed seeing her Nana!
Monday was a good day, it was Jaxson's 3 week birthday and my 32nd birthday. My parents and sister came to take me to lunch and Jaxson was pretty good all day. He then had two good more days.
Skipping ahead to Thursday, Jaxson started having more episodes more frequently. They decided to run blood work and and x-ray again like that did last time. They also decided to stop feedings until they figure out what is wrong. They x-ray showed some bowel distention and his blood work showed he is a little anemic so they did a blood transfusion last night.
This morning when my mom and I got there they had actually taken him off the CPAP and moved him to a nasal cannula. They said he had been doing good since they stopped his food and started an antibiotic so they wanted to try the cannula for 6 hours. They also had removed his PICC line because he did have another infection in his line. The viris he has this time is not as bad as last time and he will probably be on antibiotics for only 7 days this time. Chris got here at about 1 today and we had lunch. Jaxson was still on the cannula when we got there at 2 so they said since he was doing so good they would let him keep going. We got to hold him at 5 for a while then left to get dinner and when we went back at 8 they were just putting the CPAP back on him. They said he had had several episodes in the last few minutes and thought he probably just got tired. They are going to keep going with the 6 hours on and 6 hours off for a couple of days as long as he does okay. He made it 12 hours today which is by far the longest he has gone.
They said tonight they are going to evaluate him tomorrow and possibly restart his feedings then. He has lost a few ounces over the last few days so he needs to start going the other way.
This week has been full of ups and downs. I never know from day to day what he is going to do or how he will feel. Some days like today are good days and some days like yesterday are bad. They are not lying when they tell you in the begining it will be a roller coaster!
Chris' dad and step-mom are coming to visit tomorrow. They haven't seen Jaxson since he was born. It will be good to see them for a bit.
Last Friday Jaxson started having a few more episodes so I only got to hold him once and Chris didn't get to hold him at all. My best friend Lisa come up to visit and was able to see Jaxson for a little bit and then we got to go to dinner together. It was nice to have some girl time.
Saturday was a rough day. We still were not able to hold Jaxson but were able to spend time with him and touch him. They also moved his bed which was very hard on me. We were on a quiet row with only one other baby and they moved him to a row with 4 other babies and a lot more noise. I like to have my quiet time with him so this took some adjusting. Chris' mom and step-dad also came for a visit and were able to see Jaxson for a short time. They took us to lunch and saw Jaxson one more time and then went back home. it was good to be able to spend a little time with them. Madison was here all weekend too and she enjoyed seeing her Nana!
Monday was a good day, it was Jaxson's 3 week birthday and my 32nd birthday. My parents and sister came to take me to lunch and Jaxson was pretty good all day. He then had two good more days.
Skipping ahead to Thursday, Jaxson started having more episodes more frequently. They decided to run blood work and and x-ray again like that did last time. They also decided to stop feedings until they figure out what is wrong. They x-ray showed some bowel distention and his blood work showed he is a little anemic so they did a blood transfusion last night.
This morning when my mom and I got there they had actually taken him off the CPAP and moved him to a nasal cannula. They said he had been doing good since they stopped his food and started an antibiotic so they wanted to try the cannula for 6 hours. They also had removed his PICC line because he did have another infection in his line. The viris he has this time is not as bad as last time and he will probably be on antibiotics for only 7 days this time. Chris got here at about 1 today and we had lunch. Jaxson was still on the cannula when we got there at 2 so they said since he was doing so good they would let him keep going. We got to hold him at 5 for a while then left to get dinner and when we went back at 8 they were just putting the CPAP back on him. They said he had had several episodes in the last few minutes and thought he probably just got tired. They are going to keep going with the 6 hours on and 6 hours off for a couple of days as long as he does okay. He made it 12 hours today which is by far the longest he has gone.
They said tonight they are going to evaluate him tomorrow and possibly restart his feedings then. He has lost a few ounces over the last few days so he needs to start going the other way.
This week has been full of ups and downs. I never know from day to day what he is going to do or how he will feel. Some days like today are good days and some days like yesterday are bad. They are not lying when they tell you in the begining it will be a roller coaster!
Chris' dad and step-mom are coming to visit tomorrow. They haven't seen Jaxson since he was born. It will be good to see them for a bit.
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| Sweet Little Toes |
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| No CPAP! |
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| He always sleeps with his mouth open like his Daddy! :) |
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| Turn off the lights! |
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| So handsome! |
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| Rocking my baby! |
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| Time with Dad. |
Thursday, March 24, 2011
Ronald McDonald House Address
Several of you have asked for the address to the Ronald McDonald house where I'm staying. It is....
949 E. Primrose Street
Springfield, MO 65807
949 E. Primrose Street
Springfield, MO 65807
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