My poor baby Ryan had to go back on CPAP. He hates the CPAP device. It has this silicone triangle that fits over his nose. It has to be pulled tight against his face so that it can create enough pressure in his lungs. It has a harness that goes around his head to make it tight enough. It looks like a torture device. I was only able to be with him for 2 hours today and except for the 45 minutes I was holding him he was crying and fighting against the CPAP. I wish I could be there all day and night to hold him. He is so much more content when I am holding him.
Things a more or less the same with Ryan. His lungs still need help. He was breathing really fast and that is why they put him on CPAP because it makes it easier to breath. His breathing is still a little fast even on the CPAP. I asked the nurse if he would have to go back on the respirator if his breathing didn't slow down. She said he has to be showing more signs then fast breathing. If his heart rate is faster and showing signs of stress and if the oxygen level in his blood isn't good then they would look at putting him back on the vent. Right now both of those things are good and despite his fast breathing he is on less oxygen then he was on the high flow nasal canula.
They started his feedings again yesterday but it doesn't seem to be going well. I don't know how long they will keep trying the feedings this time. They don't want to force it because they said they could cause his digestive system to shut down if they force the feedings. It is so difficult, he only really has 2 issues right now and he can't seem to get past them. I know that he could be having many more problems and I should be thankful this is all he has wrong right now but it just breaks my heart that he is in distress. I wish I could fix it and make it better. That is a mothers job, take away the hurt for our babies. Not only can I not fix it for Ryan I can't fix it for my other boys. I took Andrew to Walmart tonight and he wanted to buy things for Ryan. He wanted to buy him clothes and a get well balloon, and it breaks my heart to tell him that Ryan doesn't need or can't have those things. I have bought him some clothes but I don't know how big he will be when he can wear clothes or even if he will ever wear clothes. I know that I shouldn't think like that but when I look at that tiny little boy having trouble breathing I can't help it.
Just so you all know, I am driving myself to Reno. It actually is a really nice time for me to be alone. I can listen to any music I want and sing as loud as I want or I can have quite time to think. I am off my pain meds so I don't have to worry about that but I have seem an unusual amount of police and highway patrol in the last week. I kind of feel like they are after me. There was even one in my neighborhood today pointing a radar gun at me. Of course I was speeding but he didn't come after me. I guess the Good Lord changed his mind. That's all I need is a speeding ticket!!
In closing please pray for Ryan's lungs and digestive system. I know that every one's prayers have gotten him this far and I know that we can bring him home with God's help.
Thursday, January 29, 2009
Tuesday, January 27, 2009
Late night blogging again.
I can't seem to get to the computer before midnight. Oh my gosh it is 1:20 this maybe a quick blog.
Okay let's see, how long has it been since I blogged. It seems like so much has happened. On Saturday they removed Ryan from the ventilator. He was put on a high flow nasal canula, it doesn't breath for him, it just keeps a high flow of oxygen going into his lungs. Which means he is breathing on his own. On Sunday he was put onto a CPAP breathing assistance, which stands for continuous positive airway pressure. Both this and high flow keep his lungs from completely collapsing during exhale making it easier to breath. As of today they put him back on high flow. He needs more oxygen on high flow but they said it does less damage then the CPAP so they will probably go back and forth between the two. He still has pneumonia so he could go backwards and need to go back on the respirator, but as of now he has been breathing on his own for 3 days.
Ryan also got moved out of the open warmer bed into an isloette. Those are the boxes you normally think of with preemies with the port-holes to put your hand through. The isolette regulates his body temperture better the the open waremer bed. He just couldn't be in the isolette while he was on the rapid vent respirator.
I actually got to hold my little man tonight. Doug and I went to the hospital late today. Shortly after we got there the nurse asked if I had held him yet and I said no. She said they needed to change out his isolette for cleaning and I would need to hold him for about an hour while they changed beds and got the new one warmed up. He is so tiny and seems to weigh almost nothing. He was very calm while I held him. He opened his eyes for a while and checked us out. He did some sleeping and dreaming as well.
While he seems to be better, he still is having his issues. Right now besides his lung problems, his digestive tract is not working. They keep trying to feed him but his stomach is having problems processing any food. As of now he is no longer being fed any milk. That isn't to say they are starving him, he gets fats and all the nutrients he would get if he was still in the womb. His little body just can't process anything else. So please pray for his lungs to get over the pneumonia and start needing less help to breath and that his digestive system starts to work. Those are his two hurdles for now. I am sure they won't be his last two though.
Okay let's see, how long has it been since I blogged. It seems like so much has happened. On Saturday they removed Ryan from the ventilator. He was put on a high flow nasal canula, it doesn't breath for him, it just keeps a high flow of oxygen going into his lungs. Which means he is breathing on his own. On Sunday he was put onto a CPAP breathing assistance, which stands for continuous positive airway pressure. Both this and high flow keep his lungs from completely collapsing during exhale making it easier to breath. As of today they put him back on high flow. He needs more oxygen on high flow but they said it does less damage then the CPAP so they will probably go back and forth between the two. He still has pneumonia so he could go backwards and need to go back on the respirator, but as of now he has been breathing on his own for 3 days.
Ryan also got moved out of the open warmer bed into an isloette. Those are the boxes you normally think of with preemies with the port-holes to put your hand through. The isolette regulates his body temperture better the the open waremer bed. He just couldn't be in the isolette while he was on the rapid vent respirator.
I actually got to hold my little man tonight. Doug and I went to the hospital late today. Shortly after we got there the nurse asked if I had held him yet and I said no. She said they needed to change out his isolette for cleaning and I would need to hold him for about an hour while they changed beds and got the new one warmed up. He is so tiny and seems to weigh almost nothing. He was very calm while I held him. He opened his eyes for a while and checked us out. He did some sleeping and dreaming as well.
While he seems to be better, he still is having his issues. Right now besides his lung problems, his digestive tract is not working. They keep trying to feed him but his stomach is having problems processing any food. As of now he is no longer being fed any milk. That isn't to say they are starving him, he gets fats and all the nutrients he would get if he was still in the womb. His little body just can't process anything else. So please pray for his lungs to get over the pneumonia and start needing less help to breath and that his digestive system starts to work. Those are his two hurdles for now. I am sure they won't be his last two though.
Thursday, January 22, 2009
Happy Birthday to me!
Yesterday was my birthday. Thanks to all who stopped by or called. Sorry I was not home, I was at the hospital. I had a rough birthday anyway. Ryan has an infection in his lungs. The doctor and nurse talked like it was no big deal and they started antibiotics so he should be better soon. It wasn't until the pharmacist came by and asked the nurse if they thought it was pneumonia and she said yes that I got concerned. All I can do is pray. I know God is with him, holding him and loving him but it is still hard to watch my tiny baby try to deal with all these things and not be able to help him. I went home yesterday emotionally drained and depressed. Today wasn't much better. I had to get up early and go to the doctor to have my incision checked. After seeing my doctor I went to the hospital to be with my baby. When we got there I was so tired I could hardly keep my eyes open. It is very warm in the NICU so that doesn't help when you are tired. Ryan seemed to be more bothered by our visit then comforted. He still isn't being fed. He still has a lot of mucus in his lungs. It was really more then I could deal with and we left the hospital after only about an hour and a half. I am not sure how I will be able to keep going and seeing him. It hurts so much that he is sick and no one can fix it. I feel like I need to be there with him and for him but touching him doesn't always help. It seems to cause him stress. I feel like I need to be watching him and letting the nurses know when he needs help but I can't be there all the time. My days are long and my night very short and I am so tired I am having trouble dealing with all of it. All I can do is pray for strength and peace. I am forgeting to lean on God and I am trying to deal on my own and I can't. I have to remember who is in control let go. I know that God did not bring this little boy into the world to die and I have to keep reminding myself that God will see us through.
Tuesday, January 20, 2009
Ryan is doing well.
Ryan did make a step forward today. He was off photo therapy, but they have discontinued his feedings for now. His digestive system is having trouble pushing the food through. Hopefully tomorrow they will be able to start again. He lost a few grams but is still weighing 2 lbs. 11 oz. The good news is they are gearing up to wean him off the respirator. They give him caffeine to encourage his breathing. They start with a high dose and then do smaller doses to keep his level even. Once they get to the point they can take him off the respirator they will give him another high dose just before they remove it. It sounds hopeful that could happen sometime this week. Of course he will probably still have breathing assistance, but once he is off the rigid respirator onto a more flexible one I will be able to pick him up. I can't wait for that to happen.
I guess that is a quick update. I am really exhausted though and I have not been able to get to bed before 1 am for several nights. It isn't that I can't sleep but I am on a pumping schedule to try and bring my milk production up so I have to stay up late and get one last pump in. Too bad my little one has been waking up at 6:45 every morning and expecting me to get up with him. I hate to say no as he has been without a mommy for over a month. He still doesn't understand why I won't pick him up and every time I leave he is concerned I won't come back. I try to spend as much time with him when I am here as I can to make up for lost time. So goodnight, I will hopefully have some new info on Ryan tomorrow.
I guess that is a quick update. I am really exhausted though and I have not been able to get to bed before 1 am for several nights. It isn't that I can't sleep but I am on a pumping schedule to try and bring my milk production up so I have to stay up late and get one last pump in. Too bad my little one has been waking up at 6:45 every morning and expecting me to get up with him. I hate to say no as he has been without a mommy for over a month. He still doesn't understand why I won't pick him up and every time I leave he is concerned I won't come back. I try to spend as much time with him when I am here as I can to make up for lost time. So goodnight, I will hopefully have some new info on Ryan tomorrow.
Monday, January 19, 2009
2 steps forward 1 step back
I was so excited yesterday that Ryan was no longer on photo therapy. Imagine my disappointment when I came in today and found him back on photo therapy. They said he will probably go on and off it for a while. I guess it is disappointing because they have to cover his eyes to protect them from the light. The covering pretty much cover his whole face and head so all you see is his mouth with the tubes coming out. I want to be able to see his beautiful face. His feeding are going well though. He did lose weight today not quite a ounce but he has he first dirty diaper so that could have been the ounce he lost. His body made an overnight change from being skin and bones to actually filling out and having some fat in there. He looked so much better from just having that little gain in fat. I am sure the feedings are helping with that.
Tonight he was getting his last dose of antibiotics so as of tomorrow he won't be on any kind of medication. He was getting a heart ultra sound today and a brain ultra sound tomorrow. They want to make sure his heart is doing okay as he has to go up and down on his oxygen needs several times a day. They are also following the small bleed in his brain that they found the first day. Hopefully that will have cleared it's self up.
I found out today it will be a while before I can drive again. I drove 4 blocks to the store and it was a lot harder then I thought. The drugs are effecting my brain function and even though I hadn't had a pill for several hours, I had a hard time making normal driving decisions. It also requires a lot of muscle strength that I seem to have lost from my bed rest. Good thing my mom is here for another week, hopefully I will be doing better before she leaves. I don't know what I will do when she leaves, it is nice to have live in help. I know that God will provide as he always does.
Tonight he was getting his last dose of antibiotics so as of tomorrow he won't be on any kind of medication. He was getting a heart ultra sound today and a brain ultra sound tomorrow. They want to make sure his heart is doing okay as he has to go up and down on his oxygen needs several times a day. They are also following the small bleed in his brain that they found the first day. Hopefully that will have cleared it's self up.
I found out today it will be a while before I can drive again. I drove 4 blocks to the store and it was a lot harder then I thought. The drugs are effecting my brain function and even though I hadn't had a pill for several hours, I had a hard time making normal driving decisions. It also requires a lot of muscle strength that I seem to have lost from my bed rest. Good thing my mom is here for another week, hopefully I will be doing better before she leaves. I don't know what I will do when she leaves, it is nice to have live in help. I know that God will provide as he always does.
Sunday, January 18, 2009
I am exhausted!!
I can't believe I have been home for 2 days. Too bad you can't save up rest and just power yourself up when you need it. I had a month in the hospital to rest and now I need rest and I have to go non-stop instead. Of course things are worse because I was on bed rest for a month. My muscles don't work as well, my whole body shakes because my muscles have atrophied so much. I know I am supposed to rest there just aren't enough hours in the day. My legs have started swelling in response to all the activity too. Oh well, I just have to keep going. Hopefully my body can keep up. At least the pain from my c-section is subsiding. I am still taking pain meds, but I have to take them less often.
Ryan on the other hand is doing great. He was on photo therapy for jaundice and that made his skin dry out and look terrible. Today they discontinued the photo therapy and he looked so much better. He also started feedings today. Well he is getting fed through a feeding tube but he is getting my breast milk that I am pumping. The doctor ordered feedings every 3 hours. His nurse said they usually start feeding on a 6 hour schedule but for some reason the doctor ordered every 3 for him. His first feeding was today at noon. I got to the hospital a little after 2 pm. His nurse checked his feeding tube by sucking it out with air to see if there was any food left from the first feeding, which there wasn't. That meant that he passed the first feeding test to she gave him his second feeding at 3 pm. Of course they only feed him 1 ml of food which is not very much, but at least he tolerated it.
Yesterday he was down to his lowest weight yet. 2 lbs. 10 oz. Thankfully today he had gained back 2 ounces to 2 lbs. 12 oz. That with without any feedings. Hopefully tomorrow he will have gained even more weight.
He is starting to be more active as well. His nurse said when she came on this morning he had his hand firmly grasped around the his respirator tube. She sedated him to make sure he didn't pull his tube out. But as I have said having to be sedated is a good sign it means he is feeling good. The fact that the respirator tube is starting to bug him is hopefully a good sign he will get off it soon. They did have to raise his oxygen level this morning but by the time I got there in the afternoon he was back to 33% oxygen.
I saw him cry for the first time today. He can't make any sounds because of the tubes, which breaks my heart, and there are no tears, but you can see it in his face that he is crying. Again this is a good sign. I got to change his diaper today which was just nice to be able to touch him more then I have been. He is so very tiny, the preemie diapers are big on him. It just kills me to not be able to pick him up and hold him, but I know I will before too long.
I will try to remember to take more photos tomorrow. He looked so good today and I took a picture with my camera phone but it is dark. I don't know why I didn't think to use the regular camera. I put it in the bag I take to the hospital for exactly that reason and I never even thought about it. Hopefully tomorrow he looks as good as today if not better.
Well, I am really tired but I wanted to make sure an put an update on here. Keep praying for Ryan, he isn't out of the woods yet, but God is definitely with him.
Ryan on the other hand is doing great. He was on photo therapy for jaundice and that made his skin dry out and look terrible. Today they discontinued the photo therapy and he looked so much better. He also started feedings today. Well he is getting fed through a feeding tube but he is getting my breast milk that I am pumping. The doctor ordered feedings every 3 hours. His nurse said they usually start feeding on a 6 hour schedule but for some reason the doctor ordered every 3 for him. His first feeding was today at noon. I got to the hospital a little after 2 pm. His nurse checked his feeding tube by sucking it out with air to see if there was any food left from the first feeding, which there wasn't. That meant that he passed the first feeding test to she gave him his second feeding at 3 pm. Of course they only feed him 1 ml of food which is not very much, but at least he tolerated it.
Yesterday he was down to his lowest weight yet. 2 lbs. 10 oz. Thankfully today he had gained back 2 ounces to 2 lbs. 12 oz. That with without any feedings. Hopefully tomorrow he will have gained even more weight.
He is starting to be more active as well. His nurse said when she came on this morning he had his hand firmly grasped around the his respirator tube. She sedated him to make sure he didn't pull his tube out. But as I have said having to be sedated is a good sign it means he is feeling good. The fact that the respirator tube is starting to bug him is hopefully a good sign he will get off it soon. They did have to raise his oxygen level this morning but by the time I got there in the afternoon he was back to 33% oxygen.
I saw him cry for the first time today. He can't make any sounds because of the tubes, which breaks my heart, and there are no tears, but you can see it in his face that he is crying. Again this is a good sign. I got to change his diaper today which was just nice to be able to touch him more then I have been. He is so very tiny, the preemie diapers are big on him. It just kills me to not be able to pick him up and hold him, but I know I will before too long.
I will try to remember to take more photos tomorrow. He looked so good today and I took a picture with my camera phone but it is dark. I don't know why I didn't think to use the regular camera. I put it in the bag I take to the hospital for exactly that reason and I never even thought about it. Hopefully tomorrow he looks as good as today if not better.
Well, I am really tired but I wanted to make sure an put an update on here. Keep praying for Ryan, he isn't out of the woods yet, but God is definitely with him.
Thursday, January 15, 2009
The start of something new.
This is it, I am just waiting for Doug to come get me. I am excited about leaving the hospital. I am going to get a pedicure for my scary feet. I am cutting my hair off even if Doug doesn't like it. I am getting my eyes checked so I can go back to wearing contacts.
What have I learned from this experience?
Don't procrastinate!
Don't take your family for granted, you never know when you could lose them. Not that I lost my family but I haven't seem my babies for weeks. I just want to hold them, read to them, bake them cookie and shower them with love.
Don't sweat the small stuff. I am a pretty relaxed person but I still think I get caught up on the wrong things when dealing with my kids and especially my husband.
Always, Always turn to God. I don't have a lot of worries, I try very hard to give them to God. I probably worry my prayers too much though, instead of just talking to God. This time alone has given me an opportunity to connect with Him completely differently then I ever have before. It has helped me to submit to him. To look to him when I need strength and to trust in his responses when I need answers.
Overall I walk away with a sense of peace after this experience. While I still get upset when I see my little baby in the NICU, I know that he is going to make it out of this okay. My one prayer over the last month was no matter when Ryan was born that God made sure he wasn't born until he was able to survive without any long terms problems. I know that no matter what kind of ups and downs we go through that at some point in the next 12 weeks I will be able to take home my sweet little baby and move past all of this.
What have I learned from this experience?
Don't procrastinate!
Don't take your family for granted, you never know when you could lose them. Not that I lost my family but I haven't seem my babies for weeks. I just want to hold them, read to them, bake them cookie and shower them with love.
Don't sweat the small stuff. I am a pretty relaxed person but I still think I get caught up on the wrong things when dealing with my kids and especially my husband.
Always, Always turn to God. I don't have a lot of worries, I try very hard to give them to God. I probably worry my prayers too much though, instead of just talking to God. This time alone has given me an opportunity to connect with Him completely differently then I ever have before. It has helped me to submit to him. To look to him when I need strength and to trust in his responses when I need answers.
Overall I walk away with a sense of peace after this experience. While I still get upset when I see my little baby in the NICU, I know that he is going to make it out of this okay. My one prayer over the last month was no matter when Ryan was born that God made sure he wasn't born until he was able to survive without any long terms problems. I know that no matter what kind of ups and downs we go through that at some point in the next 12 weeks I will be able to take home my sweet little baby and move past all of this.
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