Jack is doing really well today. He does have a cannula (tube to give him oxygen) in his nose, just in case he needs it, but it's more of a precaution than anything. He did need a little O2 last night after his feedings, but just a tiny bit to help him breathe a little easier. He still has a feeding tube, but he has been taking an ounce or so at each feeding by bottle, which is a huge improvement. He now weighs 5lbs 12 oz and he looks great.
Today, they tried a treatment of a drug called Mucamist, and they were very happy with the results. It thinned out a lot of mucous in his lungs, and when they did a chest x-ray this morning, they could see marked improvement. The tiny collapses are opening, and he is able to breathe much more easily.
He is not ready to come home just yet, but the doctor I saw today figures that he will discharge Jack this coming week. I'm hoping for early in the week rather than later, but I want him to be 100% better when he finally does come home. We can't wait for that day- I especially can't wait for him and Ben to be reuinted.
Thanks to all of you for keeping up with our continuing saga.
Saturday, March 28, 2009
Friday, March 27, 2009
In the interest of fairness...
I need to post a little bit about Mairead. We do have three really cute kids- not just two. And, this was her blog to begin with.
Once she is in her pajamas, Mairead knows that it is time to sit and watch Miss Spider with Daddy. She also knows that the remotes control the television, and they are the best way to get Miss Spider on tv, or to watch 'dancing.' When she wants to watch something, she grabs the remotes and says, "dancing, dancing." Last night, she settled into her chair to check out her shows.
In other news- I saw Jack this morning (thanks so much to Lee for coming over to watch Ben) and he looked great. He was taking a break from his oxygen hood and was doing just great breathing regular room air. For about an hour, he had no oxygen at all and his saturation levels were perfect. This is a huge step. They don't think he will last the whole day with no oxygen at all, so they will just watch him and give him what he needs. But, the fact that he is out of his hood means that we can hold him more often and that he will be more comfortable and have more mobility in his little bed. He was incredibly aware and alert this morning- he was definitely listening to the conversation I was having with the nurse and his little eyes were looking all around to check things out. I was very encouraged by the way he looked today. Let's hope he keeps making forward progress!
Once she is in her pajamas, Mairead knows that it is time to sit and watch Miss Spider with Daddy. She also knows that the remotes control the television, and they are the best way to get Miss Spider on tv, or to watch 'dancing.' When she wants to watch something, she grabs the remotes and says, "dancing, dancing." Last night, she settled into her chair to check out her shows.
Mairead has been very busy practicing to be a big sister. My mom took her to Target last week to buy a baby doll, and they also found some fun accessories. Mairead takes very good care of her baby, and had a great time pushing her around the house last night. She is incredibly sweet. When the baby is in her crib, she says, "Night, night," to it, and then tells us to 'shhh.' Sometimes the baby must misbehave, though, because we hear Mairead yelling, "No! No!" at her sometimes.
In other news- I saw Jack this morning (thanks so much to Lee for coming over to watch Ben) and he looked great. He was taking a break from his oxygen hood and was doing just great breathing regular room air. For about an hour, he had no oxygen at all and his saturation levels were perfect. This is a huge step. They don't think he will last the whole day with no oxygen at all, so they will just watch him and give him what he needs. But, the fact that he is out of his hood means that we can hold him more often and that he will be more comfortable and have more mobility in his little bed. He was incredibly aware and alert this morning- he was definitely listening to the conversation I was having with the nurse and his little eyes were looking all around to check things out. I was very encouraged by the way he looked today. Let's hope he keeps making forward progress!
Thursday, March 26, 2009
Just lying around
Please forgive the poor quality of these pictures- I used our old digital and it seems to be dying on us...
Anyway- the boys spent their mornings doing pretty much the same thing, albeit in very different places. Both were just lying around getting some rest and staying warm. For Ben, that meant lying on the floor while the sun shone in as he caught some rays. He had a little baseball cap to shield his eyes, but it covers his entire head.
To give you some perspective, we put Mairead's little doll next to Ben- he is not much bigger! He was all the way up to 6lbs 2oz at last check. That seems huge compared to his 5lbs 3oz birth weight.
Jack was also resting this morning in his warm little hospital bed. The first picture was taken without removing his plastic hood under which he receives his oxygen, so it is a little blurry. But you can see that he is still keeping an eye on things under there.
This is his room in the NICU. He is in an isolation room so as to prevent the spread of RSV. The nice thing is that when we visit him, we have a private space to spend time with him.
This one is a little closer and does not include the hood- he was pretty tired when I was there this morning. There is no real change, but I think that he seems better today. He was more alert and responsive, and he seems to be breathing a little easier. His oxygen levels were very good, and they had even reduced the amount of oxygen he was receiving. He is almost at room air levels, so that is good. They also discontinued his chest PT because they think they have loosened up whatever was in there. He is still working hard to breathe and he still sounds like he has a bad cold, but we are happy at any little sign of improvement. They need to get him to room air, and then he needs to eat his minimums at every feeding- it's like deja vu since those feedings were what held Ben up for so long. We hope that when he feels better, Jack will return to his old self and handle those feedings well.
That's all the news for today- thanks for checking in with us.
Anyway- the boys spent their mornings doing pretty much the same thing, albeit in very different places. Both were just lying around getting some rest and staying warm. For Ben, that meant lying on the floor while the sun shone in as he caught some rays. He had a little baseball cap to shield his eyes, but it covers his entire head.
To give you some perspective, we put Mairead's little doll next to Ben- he is not much bigger! He was all the way up to 6lbs 2oz at last check. That seems huge compared to his 5lbs 3oz birth weight.
Jack was also resting this morning in his warm little hospital bed. The first picture was taken without removing his plastic hood under which he receives his oxygen, so it is a little blurry. But you can see that he is still keeping an eye on things under there.
This is his room in the NICU. He is in an isolation room so as to prevent the spread of RSV. The nice thing is that when we visit him, we have a private space to spend time with him.
This one is a little closer and does not include the hood- he was pretty tired when I was there this morning. There is no real change, but I think that he seems better today. He was more alert and responsive, and he seems to be breathing a little easier. His oxygen levels were very good, and they had even reduced the amount of oxygen he was receiving. He is almost at room air levels, so that is good. They also discontinued his chest PT because they think they have loosened up whatever was in there. He is still working hard to breathe and he still sounds like he has a bad cold, but we are happy at any little sign of improvement. They need to get him to room air, and then he needs to eat his minimums at every feeding- it's like deja vu since those feedings were what held Ben up for so long. We hope that when he feels better, Jack will return to his old self and handle those feedings well.
That's all the news for today- thanks for checking in with us.
Wednesday, March 25, 2009
The boys are 20 days old
First, 'normal' baby stuff... these are just a few shots of Ben's first bath. As you can see from the second one, he was not a fan at first. But, then he decided he liked the warm water and he began to relax. I need to start taking more pictures- he is growing so quickly! I just feel bad about taking pictures of him alone-- he is part of a set, so I am waiting for that set to be complete!
Today actually should have been their birthday- my scheduled c-section was to be today. Instead, they are 20 days old. Ben is awesome- he is a very easy baby and is eating very well. Once he decided to eat, he became very good at it! He is all the way up to 6lbs 2oz-he seems so big now! Jack is gaining weight in the hospital, which is a good sign. He is 5lbs 10oz, but he still seems a lot smaller than his brother. I can't wait to see them side by side again so I can compare. I think we still have a way to go before that happens, though.
I don't really have much to update as far as Jack is concerned. He is relatively the same. He is on a little less oxygen than he was, so that is good. He is also a little more alert and responsive. We have set him up with his own blanket and special toy in his crib, and we brought in a CD player and a Celtic lullabies CD (Thanks, Tim) for him to listen to. It's not home, but it's something nice for him. We are able to hold him now, but only once or twice a day for short periods. We still go and just talk or sing to him so that he can hear our voices, but it is very hard on us to not be able to bring him home. Thankfully, my mom is staying with us so that I can visit Jack during the day while she watches Ben. She also goes to visit, then Dave visits in the afternoon. I usually go back around 9 or 10 at night to say good night to him after Mairead and Ben are in bed. I hope this routine does not last very much longer.
They are giving him antibiotics now and doing a little physical therapy on his chest to try to loosen the mucous in his lungs. They think it is working, but it is a slow road since he is so small. The doctors and nurses in the NICU have been great and we know they are taking good care of our little guy. They are all very sympathetic to our unique situation with one twin and a toddler at home while one twin is in the hospital.
Thanks again to everyone for all of your support- it means a lot to us!
Monday, March 23, 2009
Jack has pneumonia
Jack's doctors were concerned because although he has not gotten worse in his four days in ICU, he has not gotten better as they had hoped. He still needs the oxygen and is still working hard to breathe. Also, the adelectisis (tiny collapses) in his lungs have not 'popped open' like they should when RSV runs its course. So, today they did another x-ray and came to the conclusion that he must have pneumonia. They began a 10 day course of antibiotics, and are hoping that he will show improvement soon.
Obviously, we just want our little boy to get better no matter what he has. The only bright side is that at least there is medication available for pneumonia. RSV cannot be treated pharmaceutically; you just have to wait it out. So, we are hoping they are correct about the pneumonia and that the meds help him soon. We won't know anything for a couple of days, so we are keeping our fingers crossed that this works.
We can hold him now, but only about once a day for a short period. Moving him in and out of his bed tends to stress him out and his breathing gets more labored. It is very hard to have to 'visit' your child and to be limited to holding him so little. But, we are hoping that all of this will help him to get better soon so that we can have our whole family together.
Ben is doing great. VNA came today and he now weighs 6.1 lbs... he has been eating great! He has been very alert at home and likes to sit up and look around. He had his first bath yesterday- I did remember to take pictures so I will post those soon. He is a funny little guy with a ton of unique expressions. I can't wait for him to be reunited with his brother.
That's about all for today- thanks for checking in.
Obviously, we just want our little boy to get better no matter what he has. The only bright side is that at least there is medication available for pneumonia. RSV cannot be treated pharmaceutically; you just have to wait it out. So, we are hoping they are correct about the pneumonia and that the meds help him soon. We won't know anything for a couple of days, so we are keeping our fingers crossed that this works.
We can hold him now, but only about once a day for a short period. Moving him in and out of his bed tends to stress him out and his breathing gets more labored. It is very hard to have to 'visit' your child and to be limited to holding him so little. But, we are hoping that all of this will help him to get better soon so that we can have our whole family together.
Ben is doing great. VNA came today and he now weighs 6.1 lbs... he has been eating great! He has been very alert at home and likes to sit up and look around. He had his first bath yesterday- I did remember to take pictures so I will post those soon. He is a funny little guy with a ton of unique expressions. I can't wait for him to be reunited with his brother.
That's about all for today- thanks for checking in.
Sunday, March 22, 2009
Sunday Update
Hi everyone- thanks again for all of your emails, thoughts, and prayers. They mean a lot to us and we know how lucky we are to have such supportive family and friends. Dave and I are doing pretty well- we are so happy to have Ben home with us, especially since he is doing so well. He is eating great and is actually getting to be a little chow hound- which is great news! At the pediatrician yesterday he was up to 5lbs 13oz- he looks so big now. We will see the pediatrician once or twice a week for a while, as well as have services from visiting nurses to check his weight, etc. This routine is familiar to us since we had the same set-up with Mairead. Ben is eating and sleeping on a very regular schedule, for which we are thankful. He is so incredibly cute and has his eyes open quite a lot lately. I have been remiss about taking pictures, so I will try to do that soon.
Jack is doing pretty well- he is a strong little guy. He is over 5lbs now at 5lbs 3oz, but he still looks so much smaller than Ben. It doesn't help that he is connected to so many wires- they seem to cover his whole body. He is eating through a feeding tube and is tolerating his feeds very well. They tried to feed him from a bottle last night, and he did take about 12ccs, but that made him very tired and then he required more oxygen. So, they will keep trying every once in a while to see if he can eat without having to work so hard to breathe. There is a little less mucous in his lungs and airway now, so that is a positive step. He still is very dependent on the oxygen, though, so he has a long way to go.
We still can't pick him up which is incredibly hard on us. We have not held him since Wednesday. I know it's best for him since he should be resting as much as possible, but it seems unnatural for parents not to hold their newborn. We are doing ok with things- I get upset about it when I visit him- not while I visit, but when I have to leave. And it's hard to put two of our kids to bed at night without the third, but I know we will get there some day. Dave has been incredibly supportive- I couldn't get through all of this without him. My mom is also staying with us this weekend so that we can go back and forth to the hospital as much as we like.
Mairead seems to be handling everything well. Yesterday, her Nana took her to Target to buy a doll and some accessories. Now, she has her own baby, and the baby has a crib, a stroller, and even a little swing. She gives the baby a blankie and tells it 'night night' when she puts the doll in the crib, and this morning she got into the boys' diapers and wanted us to put one on the baby. She is incredibly sweet and will be a great big sister.
Thanks again to all of you for checking in with us- we will keep you posted.
Jack is doing pretty well- he is a strong little guy. He is over 5lbs now at 5lbs 3oz, but he still looks so much smaller than Ben. It doesn't help that he is connected to so many wires- they seem to cover his whole body. He is eating through a feeding tube and is tolerating his feeds very well. They tried to feed him from a bottle last night, and he did take about 12ccs, but that made him very tired and then he required more oxygen. So, they will keep trying every once in a while to see if he can eat without having to work so hard to breathe. There is a little less mucous in his lungs and airway now, so that is a positive step. He still is very dependent on the oxygen, though, so he has a long way to go.
We still can't pick him up which is incredibly hard on us. We have not held him since Wednesday. I know it's best for him since he should be resting as much as possible, but it seems unnatural for parents not to hold their newborn. We are doing ok with things- I get upset about it when I visit him- not while I visit, but when I have to leave. And it's hard to put two of our kids to bed at night without the third, but I know we will get there some day. Dave has been incredibly supportive- I couldn't get through all of this without him. My mom is also staying with us this weekend so that we can go back and forth to the hospital as much as we like.
Mairead seems to be handling everything well. Yesterday, her Nana took her to Target to buy a doll and some accessories. Now, she has her own baby, and the baby has a crib, a stroller, and even a little swing. She gives the baby a blankie and tells it 'night night' when she puts the doll in the crib, and this morning she got into the boys' diapers and wanted us to put one on the baby. She is incredibly sweet and will be a great big sister.
Thanks again to all of you for checking in with us- we will keep you posted.
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