Saturday, March 28, 2009
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.
Friday, March 27, 2009
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
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.
Wednesday, March 25, 2009
Monday, March 23, 2009
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
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.