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
Thursday, March 24, 2011
Wednesday, March 23, 2011
Jaxson Update 3/23/11
Jaxson has done much better the last two days. His blood work has all come back negative, they started feeding him again today (they stopped it when he got sick) and he has gained some weight. He actually made it to 3 pounds! We are so excited. He even went up in diaper size from extra small to just small! He is still having a few episodes but not as many as he was having.
The put in a new PICC line yesterday and put it in his head. Luckily we had talked about this before so I was more prepared for it. It actually looks more comfortable for him than in his arm.
Jaxson has also started opening his eyes more often, it even seems that he does it after he hears my voice. One nurse told me, "he doesn't do that for me he only opens them after you get here." He also started moving around a lot more, he loves to stretch his legs and arms.
I have also started to read to him sometimes when I hold him. They told me it helps him to recognize my voice. Chris and Madison are going to bring me more books this weekend.
After Chris left I was actually alone for the first time since going in the hospital. I did good for about the first 24 hours and then started thinking on how long I will be here and how lonely it can become, day in and day out of walking the long hall to the NICU up to 4 times a day. I called Chris and had a good cry and then went to see Jaxson and got to hold him for the 3rd time yesterday and was much better when I left. Holding my little boy always makes me feel better.
My mom spent the day with me today and my sister may come to see me tomorrow. Then hopefully my best friend is coming Friday and then Chris and Madison and my mother-in-law will be here this weekend. So I have a very full next few days. Below are a few pictures from the last couple of days.
The put in a new PICC line yesterday and put it in his head. Luckily we had talked about this before so I was more prepared for it. It actually looks more comfortable for him than in his arm.
Jaxson has also started opening his eyes more often, it even seems that he does it after he hears my voice. One nurse told me, "he doesn't do that for me he only opens them after you get here." He also started moving around a lot more, he loves to stretch his legs and arms.
I have also started to read to him sometimes when I hold him. They told me it helps him to recognize my voice. Chris and Madison are going to bring me more books this weekend.
After Chris left I was actually alone for the first time since going in the hospital. I did good for about the first 24 hours and then started thinking on how long I will be here and how lonely it can become, day in and day out of walking the long hall to the NICU up to 4 times a day. I called Chris and had a good cry and then went to see Jaxson and got to hold him for the 3rd time yesterday and was much better when I left. Holding my little boy always makes me feel better.
My mom spent the day with me today and my sister may come to see me tomorrow. Then hopefully my best friend is coming Friday and then Chris and Madison and my mother-in-law will be here this weekend. So I have a very full next few days. Below are a few pictures from the last couple of days.
Monday, March 21, 2011
Jaxson Update 3/21/11
This weekend was rough. We had our first step back and of course I took it pretty hard.
Saturday we went to see Jaxson at 11am and hold him, during the rest of the day he had a few "episodes" of slowing his heart rate and his breathing down. He has had these before but he had done it a lot more times that day. Our nurse called the doctor and they agreed to run some tests. They said that when a preemie has these episodes the first thing they think about is infection. They took an ex-ray of his belly and some blood work. The ex-ray was fine but the blood work did show a virus. They took blood from his PICC line (A Peripherally Inserted Central Catheter, or "PICC line," is a thin, soft plastic tube — like an intravenous (IV) line — that allows you to receive medicines and fluids. A PICC line stays in place for as long as needed.) and from another site and only found the infection in his PICC line, so they went ahead and took it out and started him on antibiotics.
Saturday night I didn't get to hold him since he wasn't very stable and that was the hardest part for me. I cherish my times to hold him and comfort him and I couldn't do it. I'm glad Chris was there to keep reassuring me.
Sunday morning they said he was doing ok, he had a couple of episodes but not many. They also wanted to do a spinal tap to make sure the virus wasn't going to his brain. Still didn't get to hold him but we stayed with him for a while.
That afternoon my brother, Zack, and his wife Margaret came to meet Jaxson. They were going to take Chris home but since we were still waiting to see what was going on with Jaxson, Chris decided to stay another day. (I also asked him too because it's all a little easier when he is here). We had lunch with Zack and Margaret and then went back to the hospital to see Jaxson. Margaret got to see him open his eyes a little and Zack held his knee. It was fun to have my brother there for a little bit and introduce him to my son!
At the 8pm touch time we went back and Jaxson hadn't had any episodes and they said he was stable enough for me to hold him for a little bit. It felt so good and it was only for about 20 minutes.
This morning we went back at 11 and got a report from the doctor. He said that he was responding well to the antibiotics, had the spinal tap and all looked good from that. He hadn't been having any episodes, but would continue on antibiotics for 14 days. What a good report. I know we will have more little set backs but I don't think knowing that makes it any easier. It's so hard to see your baby sick and especially when you can't hold them!!!!
My sister was so nice and offered to take Chris half way home and his dad came the other half (so I could keep the car this week, I haven't driven for two weeks until today) so he left at 12:30 today. This is also the first time I have been alone for the last two weeks. I'm glad it's a beautiful day and we had a good report from the doctor. I was able to take a nap and now am getting ready to go back to the hospital. It's hard to imagine that this will be my life for at least the next 4-6 weeks if not longer. Still taking it one day at a time.
Thanks for all the prayers for little Jaxson (I call him "Big Boy" to his face) Keep them coming.
Saturday we went to see Jaxson at 11am and hold him, during the rest of the day he had a few "episodes" of slowing his heart rate and his breathing down. He has had these before but he had done it a lot more times that day. Our nurse called the doctor and they agreed to run some tests. They said that when a preemie has these episodes the first thing they think about is infection. They took an ex-ray of his belly and some blood work. The ex-ray was fine but the blood work did show a virus. They took blood from his PICC line (A Peripherally Inserted Central Catheter, or "PICC line," is a thin, soft plastic tube — like an intravenous (IV) line — that allows you to receive medicines and fluids. A PICC line stays in place for as long as needed.) and from another site and only found the infection in his PICC line, so they went ahead and took it out and started him on antibiotics.
Saturday night I didn't get to hold him since he wasn't very stable and that was the hardest part for me. I cherish my times to hold him and comfort him and I couldn't do it. I'm glad Chris was there to keep reassuring me.
Sunday morning they said he was doing ok, he had a couple of episodes but not many. They also wanted to do a spinal tap to make sure the virus wasn't going to his brain. Still didn't get to hold him but we stayed with him for a while.
That afternoon my brother, Zack, and his wife Margaret came to meet Jaxson. They were going to take Chris home but since we were still waiting to see what was going on with Jaxson, Chris decided to stay another day. (I also asked him too because it's all a little easier when he is here). We had lunch with Zack and Margaret and then went back to the hospital to see Jaxson. Margaret got to see him open his eyes a little and Zack held his knee. It was fun to have my brother there for a little bit and introduce him to my son!
At the 8pm touch time we went back and Jaxson hadn't had any episodes and they said he was stable enough for me to hold him for a little bit. It felt so good and it was only for about 20 minutes.
This morning we went back at 11 and got a report from the doctor. He said that he was responding well to the antibiotics, had the spinal tap and all looked good from that. He hadn't been having any episodes, but would continue on antibiotics for 14 days. What a good report. I know we will have more little set backs but I don't think knowing that makes it any easier. It's so hard to see your baby sick and especially when you can't hold them!!!!
My sister was so nice and offered to take Chris half way home and his dad came the other half (so I could keep the car this week, I haven't driven for two weeks until today) so he left at 12:30 today. This is also the first time I have been alone for the last two weeks. I'm glad it's a beautiful day and we had a good report from the doctor. I was able to take a nap and now am getting ready to go back to the hospital. It's hard to imagine that this will be my life for at least the next 4-6 weeks if not longer. Still taking it one day at a time.
Thanks for all the prayers for little Jaxson (I call him "Big Boy" to his face) Keep them coming.
Friday, March 18, 2011
Jaxson Update 3/18/11
Today was a good day. I was able to hold him for a little while this morning. His temperature was down so we had to put him back a little early. My friends Stephanie and Brandon came by on their way to go camping and took me to lunch and then went with me to meet Jaxson. They took off his CPAP again this morning and he made it 5 hours. The doctor told us this is normal and he may go on and off it several times before he is completely off it.
Tonight was the big night as Chris got to hold Jaxson for the first time. Jaxson and Chris loved every minute of it! He also went up in his feeding amount and gained 3oz! He now weighs 2lbs 13oz!!!
I've always heard parents say this but now I know what it feels like, I love that little guy so much it hurts! I love holding him and hate it when I have to leave him. My favorite part is giving him kisses. Can't wait till we can take him home!!!
Tonight was the big night as Chris got to hold Jaxson for the first time. Jaxson and Chris loved every minute of it! He also went up in his feeding amount and gained 3oz! He now weighs 2lbs 13oz!!!
I've always heard parents say this but now I know what it feels like, I love that little guy so much it hurts! I love holding him and hate it when I have to leave him. My favorite part is giving him kisses. Can't wait till we can take him home!!!
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| Getting weighed. |
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| Hello world. |
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| I gained 3oz! :) |
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| Dad holding Jaxson for the first time. |
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| Checking out his Daddy |
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| Snuggling with Dad |
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| Daddy and Jaxson |
Thursday, March 17, 2011
Jaxson Update 3/17/11
What a week it has been. We have had good days and not so good days. Tuesday was a hard one but really because of my medication. Not sure who all knows but the reason I delivered early was because I very quickly developed severe pre-eclampsia. One doctor told me I impressed the lab with my numbers because they were so bad. So the next few days after I delivered my blood pressure was still all over the place and very high at times so when I was discharged I was still on quite a bit of medication. Then this week my pressures started normalizing but I was still on all the medication so the pressures went down pretty low and made me VERY week. I even felt like I might pass out several times. I don't have a doctor here and my doctor was out for the day but finally on Wednesday my mom was able to speak with him on the phone while I was with Jaxson. He agreed that I was way over medicated and explained how to get me off some of the meds so I would start to feel normal again. Feeling so weak and having no energy made it so difficult to keep Jaxson's schedule which was so hard for me emotionally.
Jaxson is still so young (really on 30 weeks) that he is on Minimal Stimulation which means they only allow him to be touched at certain times during the day. Even the nurses only touch him during those times. His schedule is 8am, 11am, 2pm, 5pm, 8pm, 11pm, 2am, 5am. I have started a routine of seeing him at the 11am, 2pm, and 8pm times and trying to get some rest in between. I know I will work up to visiting more often once I have more energy.
He did have to go back on his CPAP machine as he was working to hard to breath without it. It does not breath for him but just reminds him to breath. They will try and take it off again in the next couple of days. He has started continuous feeds which means he get 3cc's of food every hour and has gained an ounce so he now weighs 2lbs 10oz. I got to give him a bath today, it was just water and wash cloth but it was fun to wash him off and they took his CPAP off for a minute so I got to see his sweet face.
Last night a girl brought in her baby that was born at 28 weeks and weight just 4oz more than Jaxson did and she is now 5 months old and 15lbs and very healthy. It did my heart good to see such a sweet baby that was just about the same age and weight as Jaxson doing so good today.
I have so enjoyed my time holding him, feeling him breath and looking at his sweet face. He even once looked up and met my eyes for several minutes. Tonight I played soft music and talked about all our family members and how much each of them already love him.
I will try harder to post more updates, it's crazy how fast the days go by and I just can't seem to get much done except be with Jaxson, which is by far the most important thing right now.
Chris will be here tomorrow night, and I CAN'T WAIT. I miss him so much and it's going to be one of the hardest things being away from him so much. I'm very thankful my mother and sister are close by and are able to spend time with me since Chris can't be here during the week.
I really appreciate all the prayers and support and kind words from everyone. I am reading them, just don't have much time to respond to them all.
I'm not able to post pictures for some reason right now but will add some as soon as I can.
Jaxson is still so young (really on 30 weeks) that he is on Minimal Stimulation which means they only allow him to be touched at certain times during the day. Even the nurses only touch him during those times. His schedule is 8am, 11am, 2pm, 5pm, 8pm, 11pm, 2am, 5am. I have started a routine of seeing him at the 11am, 2pm, and 8pm times and trying to get some rest in between. I know I will work up to visiting more often once I have more energy.
He did have to go back on his CPAP machine as he was working to hard to breath without it. It does not breath for him but just reminds him to breath. They will try and take it off again in the next couple of days. He has started continuous feeds which means he get 3cc's of food every hour and has gained an ounce so he now weighs 2lbs 10oz. I got to give him a bath today, it was just water and wash cloth but it was fun to wash him off and they took his CPAP off for a minute so I got to see his sweet face.
Last night a girl brought in her baby that was born at 28 weeks and weight just 4oz more than Jaxson did and she is now 5 months old and 15lbs and very healthy. It did my heart good to see such a sweet baby that was just about the same age and weight as Jaxson doing so good today.
I have so enjoyed my time holding him, feeling him breath and looking at his sweet face. He even once looked up and met my eyes for several minutes. Tonight I played soft music and talked about all our family members and how much each of them already love him.
I will try harder to post more updates, it's crazy how fast the days go by and I just can't seem to get much done except be with Jaxson, which is by far the most important thing right now.
Chris will be here tomorrow night, and I CAN'T WAIT. I miss him so much and it's going to be one of the hardest things being away from him so much. I'm very thankful my mother and sister are close by and are able to spend time with me since Chris can't be here during the week.
I really appreciate all the prayers and support and kind words from everyone. I am reading them, just don't have much time to respond to them all.
I'm not able to post pictures for some reason right now but will add some as soon as I can.
Monday, March 14, 2011
Jaxson Update 3/14/11
Today was the first real good day in a while. It started of difficult because of my still fluctuating blood pressure. They have me on lots of meds at at time when my blood pressure drops really low I get very weak. Our (my mom is here with me since Chris had to go back to work) first visit with Jaxson today he got one of his main lines taken out of his belly button, it was a quick procedure that didn't cause him any pain and I got to hold his legs while they did it. Since it was taken out I was able to hold him but had to wait 4 hours. Up until now I have only been able to pick him up once for a quick second and give him a kiss. This time I was able to hold him to my chest, skin to skin for about an hour and a half. It was amazing to say the least. It was so good to feel him breath and hear his little noises. I am able to touch him every 3 hours so at the 5pm "touch time" I changed his poopy diaper. I can't tell you how much fun it is to clean off his little bottom. At the 8pm "touch time" we got even more good news that they were going to take off his CPAP machine that went around his head into his nose and just put in the little prongs that you see when people are getting oxygen. We can now see his head and face so much better. I was able to hold him again for about 45 min. He did have a few episodes when I was holding him where his heart rate would go way down and he slowed his breathing but he would recover himself. They said it could be reflux or he was just really relaxed. I plan to write a lot more but it's late and I need my rest for sure so I will catch up later, but I wanted to give everyone an update on our good day. We will probably be here for at least 6 to 8 weeks not sure exactly but will know more in the coming weeks. Thanks to everyone for their support and prayers!
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