I hope everyone had a great Christmas!! Ryan and I had such a good time with our families, it was so nice to be able to celebrate this year. Austin of course made out like a bandit!! After it was all said and done he had 2 washer loads of clothes!!
He is continuing to do so well. As of December 30th Austin is 3lbs 6oz and growing steadily. He is still on the CPAP but is alternating between that and the kenula. He’s still as strong and feisty as ever too! A few days ago I noticed he had something covering his knees and asked what it was for. His nurse said she put them on him because when he’s on his belly he’s been scooting himself on his knees and making them red so she put these thin plastic barriers (like band-aids) to protect his skin. He continues to amaze his nurses and doctors with how strong and determined he is. (Mom, does this remind you of anyone?? Haha I guess I’ll be figuring out what it was like for you to raise me!) He is also getting a bath about once or twice a week now. He really likes being bathed and doesn’t even cry! It’s kind of surprising because a lot of babies cry while they’re being bathed and a super-sensitive preemie you think would throw a fit. But his nurses say he likes it so that’s a really encouraging sign. He also is tolerating room temperature much better than when he was first born. When I would hold him before, he would have two or three warming blankets and big fuzzy blanket on top of him. But now he just has one or two regular blankets wrapped around him and his temperature is great. This is an important step because he has to be able to tolerate room temperature (he’s currently in a warm and humid isolette to keep his body temperature up) in order to be in an open bassinette. He then has to continue to do well in an open bassinette (among other things) to be able to come home. Austin is also becoming more alert. The last few times I’ve visited with him his eyes have been open and he’s been looking very intently at his surroundings. It’s so incredibly precious because along with his eyes being open he’s been smiling as well! I don’t care if it’s not a ‘true’ smile because it’s so stinkin’ cute!!!
Austin has a big appointment coming up on Friday. He will have his eyes examined to check on his retinas and blood vessels. He will have to have his eyes dilated and eyelids held open with tiny little prongs. While the exam is done quickly Ryan and I were told this isn’t really an exam that parents are comfortable being present for, understandably! So Friday we will find out if he has any sort of retinal detachment or if the blood vessels in his eyes are developing abnormally. Something else I learned in NICU is that too much oxygen could cause the blood vessels in his eyes to grow abnormally. Fortunately he has not needed a lot of oxygen so we’re extremely hopeful that his eyes are developing just as well as the rest of him has been.
Please keep Austin in your prayers on Friday. He is still fighting and needs so much prayer. I will post an update shortly after we get news on how he did during the exam. Thank you to all of you who have been following his progress for so long. Ryan and I sincerely appreciate everyone’s concern and Austin certainly needs all your prayers.
Happy New Year!!
Wednesday, December 30, 2009
Monday, December 21, 2009
Another Good Week!
Austin is continuing to do exceptionally well, his weight is up to 3 pounds one ounce as of December 21st!! When he was first getting on a regular feeding schedule, he was started with 2 1/2 ml every eight hours. Now he is up to 23 ml every 3 hours! His intestines are continuing to process everything as they should be and his heart murmur seems to be going away. He has been doing so well at getting through all of his challenges we can't help but be optimistic that he will continue to do as well as he has been. His next obstacle will be his vision test which will be done sometime next week or the week after. An eye doctor will visit Austin and determine if he has any retinal detachment. If this is the case they can do laser corrective surgery actually in his room to help prevent blindness. It's not a guarantee should he have any problems but at least he won't have to go to Riley. His nurses are also hoping that his lungs will be developed enough to take him off of his CPAP sometime this week. He was alternating between his nasal kenula (the other breathing aid he was switched to, I finally remembered what it was called...) and the CPAP but they decided to keep him on the CPAP because he wasn't struggling as much with it. We're really hoping that he's able to come off the nasal breathing aids because they're really starting to irritate his sensitive nose. Once in a while he would get a bit of a bloody nose because his skin was getting so irritated by the prongs so they traded the prongs for a mask that covers his nose. If you look at your thumbnail it will give you a good idea of how small the mask is. It is not as invasive as the prongs but he is still uncomfortable so we're hoping that he will soon be able to breathe well enough to not need any aid. (the breathing tube actually forces him to breathe and supplies oxygen whereas the CPAP and nasal kenula blow air pressure into his lungs to keep them inflated.) Last week a blood culture showed that Austin could be coming down with an infection. He was started on antibiotics and two or three days later another blood culture showed that it was negative for infection. Being in a warm, humid isolette with a picc line and i.v. (which leaves an open point of entry into his body) makes him extremely susceptible to infection so he was being closely monitored for any changes in his blood. Fortunately whatever was going on was caught and treated early enough and has not developed into an issue.
Ryan and I are fully aware that Austin does not have to be doing as well as he is. He has been able to avoid heart surgery, intestinal surgery, severe brain damage, and neuromuscular disorders such as cerebral palsy. Each day that he progresses is not taken for granted and we are thankful every day that he has been able to do so well. Each day that we wake up, Ryan and I thank God for Austin's progress and every night that we go to bed we pray that he will continue to do well. Although he is not in the clear yet, Austin has already shown us how strong he is and we are starting to let ourselves think about bringing him home.
Ryan and I are fully aware that Austin does not have to be doing as well as he is. He has been able to avoid heart surgery, intestinal surgery, severe brain damage, and neuromuscular disorders such as cerebral palsy. Each day that he progresses is not taken for granted and we are thankful every day that he has been able to do so well. Each day that we wake up, Ryan and I thank God for Austin's progress and every night that we go to bed we pray that he will continue to do well. Although he is not in the clear yet, Austin has already shown us how strong he is and we are starting to let ourselves think about bringing him home.
Monday, December 14, 2009
December 14
Austin had a small step backward today but his doctor and nurses are not very concerned. He was getting a little worn out on the new breathing aid so they put him back on his CPAP today. It is better news than being put on his ventilator and he is still breathing on his own so this is only minor. They will keep him on his CPAP for a little while and let him rest for a bit and then begin alternating between the two again. He's been eating regularly and digesting everything well so this is also a very good sign. They are slowly increasing the amount of food he is eating as well. When they first started he was receiving 3 milliliters of food. Then it was 5 and now it's 8 milliliters every 3 hours. He's gained some more weight and is up to 2 pounds 8 ounces! Austin has also not had any trouble so far with any kind of infection so his doctor and nurses are also pleased about this as well. He is continuing to make steps in the right direction and although he took a tiny step back, this is not a major concern and is only temporary.
Sunday, December 13, 2009
Hello everyone!! I just wanted to give you a heads up that the posts may be kind of spaced apart for a little while. We’ve been able to connect to a public wireless connection from our house but for whatever reason with the change in weather we are not able to connect very well. :) So I’ve been able to get online whenever we have a decent connection or when I take my computer to the hospital.
So our little Austin is doing really really well!! He’s been receiving actual food since Tuesday and has been handling it like a pro! A concern is that his intestines will not be able to process the food and he will begin to have bowel and abdominal troubles that could need surgery. That would mean removing parts of his intestines resulting in him having to wear a bag on his abdomen. But once again God has intervened on Austin’s behalf and is allowing his intestines to function well and process his food correctly. He is doing so well that they have been increasing his food intake each day from every 8 hours on Tuesday, every 6 hours on Thursday, to every 3 hours on Friday! Another change that has happened recently is that they were alternating his breathing aids. His sensitive nose started to bruise from the CPAP tubes so they have introduced something else that will give his nose a break. (Once again…I do not know the name. It is just two small tubes that fit inside his nostrils kind of like oxygen tubes.) They were doing 6 hours on the CPAP and 3 hours on the tubes. On Sunday they stopped alternating between the CPAP and the tubes and if he keeps his breaths per minute up and his oxygen saturation at a good level, he will stay on it. This is a good sign because he is doing a little more on his own and still doing well.
Tuesday was a really good day for me too because while Ryan was at work I stopped in to see Austin and his nurse surprised me by telling me I would be able to hold him! I absolutely love it when Ryan is there so that we can spend time together with him as a family but it was so special to have that time alone with him. He is so fascinating!! Even in his sleep he’s active!! His little legs move and twitch in his sleep and he repositions his arm or hand every once in a while. It’s funny to feel him moving like that on the outside! I also think he is a future snorer. He sleeps with his mouth gaping wide open and for being such a little guy he’s a heavy mouth breather already!! Haha! It was so cute to hear his tiny mouth working. (to put it into perspective, look at the tip of your pinky finger….it is too big to fit in his mouth.) Every so often he would smack his mouth and since his room was so quiet I could hear those small sounds. It was so precious I can’t even describe it!
Austin continued to do well this whole week. Although his breathing rate and heart rate would drop occasionally, he was able to correct it himself and this is all normal for babies as premature as he is. It is encouraging because this does not happen very often and he is able to correct it on his own instead of with help from a nurse. He also has been eating consistently so they have been decreasing his i.v. drip of protein, fat, and calories. Austin has been so stable that Friday afternoon he got his first bath! His nurse said that he seemed to really like it, he didn’t cry at all!
We are still taking each day at a time and trying not to get ahead of ourselves in this situation but it’s so much easier to get through the day when they go as well as they have been going!! Thank you so much for your continued prayers, Austin is an example of God’s grace and power. Ryan and I are so grateful that he is doing as well as he is and are looking forward to the rambunctious, creative child he will grow to be.
Oh! I’ve had some people ask for our address so if you want to email me at fweecha@msn.com I’d be happy to email you back with our address!
So our little Austin is doing really really well!! He’s been receiving actual food since Tuesday and has been handling it like a pro! A concern is that his intestines will not be able to process the food and he will begin to have bowel and abdominal troubles that could need surgery. That would mean removing parts of his intestines resulting in him having to wear a bag on his abdomen. But once again God has intervened on Austin’s behalf and is allowing his intestines to function well and process his food correctly. He is doing so well that they have been increasing his food intake each day from every 8 hours on Tuesday, every 6 hours on Thursday, to every 3 hours on Friday! Another change that has happened recently is that they were alternating his breathing aids. His sensitive nose started to bruise from the CPAP tubes so they have introduced something else that will give his nose a break. (Once again…I do not know the name. It is just two small tubes that fit inside his nostrils kind of like oxygen tubes.) They were doing 6 hours on the CPAP and 3 hours on the tubes. On Sunday they stopped alternating between the CPAP and the tubes and if he keeps his breaths per minute up and his oxygen saturation at a good level, he will stay on it. This is a good sign because he is doing a little more on his own and still doing well.
Tuesday was a really good day for me too because while Ryan was at work I stopped in to see Austin and his nurse surprised me by telling me I would be able to hold him! I absolutely love it when Ryan is there so that we can spend time together with him as a family but it was so special to have that time alone with him. He is so fascinating!! Even in his sleep he’s active!! His little legs move and twitch in his sleep and he repositions his arm or hand every once in a while. It’s funny to feel him moving like that on the outside! I also think he is a future snorer. He sleeps with his mouth gaping wide open and for being such a little guy he’s a heavy mouth breather already!! Haha! It was so cute to hear his tiny mouth working. (to put it into perspective, look at the tip of your pinky finger….it is too big to fit in his mouth.) Every so often he would smack his mouth and since his room was so quiet I could hear those small sounds. It was so precious I can’t even describe it!
Austin continued to do well this whole week. Although his breathing rate and heart rate would drop occasionally, he was able to correct it himself and this is all normal for babies as premature as he is. It is encouraging because this does not happen very often and he is able to correct it on his own instead of with help from a nurse. He also has been eating consistently so they have been decreasing his i.v. drip of protein, fat, and calories. Austin has been so stable that Friday afternoon he got his first bath! His nurse said that he seemed to really like it, he didn’t cry at all!
We are still taking each day at a time and trying not to get ahead of ourselves in this situation but it’s so much easier to get through the day when they go as well as they have been going!! Thank you so much for your continued prayers, Austin is an example of God’s grace and power. Ryan and I are so grateful that he is doing as well as he is and are looking forward to the rambunctious, creative child he will grow to be.
Oh! I’ve had some people ask for our address so if you want to email me at fweecha@msn.com I’d be happy to email you back with our address!
Tuesday, December 8, 2009
Sorry For The Delay!!!!
Sorry for the gap in updates this past week. Austin has been doing well these past few days. Sunday morning he was taken off the breathing tube and is doing great! His heart murmur is less noticeable which means that it is closing up as it should. He was given a second echocardiogram because Dr. G. was still hearing what he thought could be an open PDA valve. (the valve that connects the left and right side of the heart, it’s supposed to close before babies are born) The second echo showed a slightly open PDA so he was given medication to close it and it has been working as it should. Dr. G. says that it’s barely noticeable and that his medicine is working well so he will probably not have to have heart surgery. His lungs are also continuing to develop well. He was given a breathable and intravenous steroid to help them along. His progress is going well enough to discontinue his breathable steroid so that is a huge encouragement. He is also continuing to show no signs of bowel distress as of yet. Last Saturday when he was put back on his breathing tube they had to discontinue his feedings so he was put back on an i.v. drip of protein, fat, and other nutrients. This helps him maintain weight while receiving calories and nutrients. Anytime Austin’s intestines show signs of not functioning properly or he has to be put back on his breathing tube his feedings are postponed. He has been doing so well this week that Dr. G. has decided to start his feedings back up today so we will see how he does processing real food. Austin has also passed his birth weight! He lost a few ounces after he was born but has been slowly regaining it back. He was born at 2 pounds 4 ounces and is now at 2 pounds 5 ounces! We were told today that provided Austin continues to do well I can start holding him again. Since he was so unstable last week we weren’t even allowed to touch him let alone hold him. Yesterday morning was the first time I touched my son in over a week. I was able to reach my hand in and place it on his back, it felt SO nice to be able to connect with him!! Please don’t ever take for granted being able to kiss your kids!
These past few days have been a huge rollercoaster for Austin, Ryan, and me. Austin was struggling at the beginning of last week and then made very slow progress the rest of the week. It was extremely difficult for Ryan and I to stand by and not be able to do anything but look at him. On top of that it was really hard for me not being able to hold him anymore. I know that it’s in his best interest and I would willingly not hold him until he could come home if I knew it would help him get stronger but it still is really hard having just had a baby and not be allowed to touch him. Ryan went back to work last week so it was an adjustment for him getting back into the swing of things and dealing with everything else on top of that. I’m going back to work this week but will only be working Wednesday, Thursday, and Friday. I’m actually looking forward to doing something normal and having a distraction. It’s nice because I’m only working 3 six hour days so I’m not going to be overwhelmed trying to work full time and go to the hospital regularly too. When Austin is ready to come home I’ll be able to take the rest of my maternity leave to spend at home with him. Ryan will also be able to take a week of vacation time so we can both spend lots of time with our new guy.
When Austin is able to come home, Ryan and I will have to make a big effort to keep him from getting sick and away from germs as much as possible. For the first two years if he catches a cold, because of his lungs he could end up back in the hospital on a breathing tube again. So for at least the first two years we will not be taking him to the mall or grocery shopping. (Ryan’s not exactly sad about that, this is his ticket out of grocery shopping!) We won’t be able to have large groups of people over to see Austin right away, people will have to come in smaller groups. In addition to having only a few visitors at a time, we will have hand sanitizer right next to the door so people can sanitize right when they walk in. Ryan and I are supposed to wash our hands frequently as well. Also, since his lungs will still be quite sensitive we won’t have any candles burning or wear perfume or cologne. There are a few smokers on both mine and Ryan’s side so when they hold Austin they will have to change their shirts so he is not exposed to the smoke.
There are many precautions that Ryan and I will have to take to make sure Austin stays well. While we are thinking ahead and making plans for when he comes home, we are still concentrating on each day as it comes. Austin has made quite a lot of progress but still has a long way to go. It has meant so much to Ryan and I that so many people have been praying for Austin and for us as well. He has made good progress, please continue to pray that he will keep moving forward.
These past few days have been a huge rollercoaster for Austin, Ryan, and me. Austin was struggling at the beginning of last week and then made very slow progress the rest of the week. It was extremely difficult for Ryan and I to stand by and not be able to do anything but look at him. On top of that it was really hard for me not being able to hold him anymore. I know that it’s in his best interest and I would willingly not hold him until he could come home if I knew it would help him get stronger but it still is really hard having just had a baby and not be allowed to touch him. Ryan went back to work last week so it was an adjustment for him getting back into the swing of things and dealing with everything else on top of that. I’m going back to work this week but will only be working Wednesday, Thursday, and Friday. I’m actually looking forward to doing something normal and having a distraction. It’s nice because I’m only working 3 six hour days so I’m not going to be overwhelmed trying to work full time and go to the hospital regularly too. When Austin is ready to come home I’ll be able to take the rest of my maternity leave to spend at home with him. Ryan will also be able to take a week of vacation time so we can both spend lots of time with our new guy.
When Austin is able to come home, Ryan and I will have to make a big effort to keep him from getting sick and away from germs as much as possible. For the first two years if he catches a cold, because of his lungs he could end up back in the hospital on a breathing tube again. So for at least the first two years we will not be taking him to the mall or grocery shopping. (Ryan’s not exactly sad about that, this is his ticket out of grocery shopping!) We won’t be able to have large groups of people over to see Austin right away, people will have to come in smaller groups. In addition to having only a few visitors at a time, we will have hand sanitizer right next to the door so people can sanitize right when they walk in. Ryan and I are supposed to wash our hands frequently as well. Also, since his lungs will still be quite sensitive we won’t have any candles burning or wear perfume or cologne. There are a few smokers on both mine and Ryan’s side so when they hold Austin they will have to change their shirts so he is not exposed to the smoke.
There are many precautions that Ryan and I will have to take to make sure Austin stays well. While we are thinking ahead and making plans for when he comes home, we are still concentrating on each day as it comes. Austin has made quite a lot of progress but still has a long way to go. It has meant so much to Ryan and I that so many people have been praying for Austin and for us as well. He has made good progress, please continue to pray that he will keep moving forward.
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