RSV

Nate got his first RSV shot yesterday. It was way worse than any vaccine he's had so far. Poor little bug is not feeling well at all :( The doctor gave us a bunch of information about RSV and reiterated how careful we have to be with him. It's hard because he looks and acts so healthy that it's easy to forget that his little lungs are still very fragile. We thought maybe he was doing well enough to be a little less strict about visitors and outings but it doesn't look like that's going to happen :( I just have to keep reminding myself that no matter how hard it is to always be home, it's better than being in the hospital.

I wanted to share this sample letter that they gave us. It is meant to send out to friends and family of preemies. Hopefully it helps people understand how serious we have to be about this.

Dear friends and family,

We’re writing regarding a very important matter: RSV. For those of you who plan to visit us over the next few months, and even if you are not, please take a few minutes to read this letter.

We recently discussed RSV with our baby's pediatrician. If you are not aware of RSV, respiratory syncytial virus, you are among the majority. Most people have not heard of RSV, even though nearly every child has had the virus by age two. For full-term babies, RSV typically is not any worse than a common cold, but for preemies, the virus can be quite different. Babies born earlier than 36 weeks are at the highest risk for serious complications like pneumonia, bronchiolitis, and other sometimes fatal complications. Our baby was born premature, was a multiple, has chronic lung disease, and had low birth weight; these are among the highest risk factors for contracting RSV and developing serious complications. This website offers a great visual comparison of a preemie’s lungs compared to the lungs of a full term baby:
www.PreemieCare.org/LungsTrees03-4.pdf

Preventing the spread of RSV is very difficult. Thus, we must be vigilant about keeping our child safe during RSV season (October through April). The virus is spread through physical contact, in the air via a cough or sneeze, or by touching an infected object. The virus can live as long as six hours on hands and up to twelve hours on objects, and it spreads very easily, especially from child to child. Studies have also shown that infants pose an even higher risk of spreading RSV to others.

You may ask, “Can’t they fight it off and build up their immune system? Children need to get sick, right?” The simple answer is NO. Since our baby was pre-term, he did not acquire the necessary immunities to fight off infection. If he contracts RSV, he could be hospitalized and develop serious complications.

We’ll be asking our visitors to follow a few guidelines to help prevent our baby from contracting RSV or any other illness.

We ask that all visitors do the following:

1. When you arrive, please wash your hands and use hand- sanitizer as needed before touching the baby.

2. Please, if it is possible, get a flu shot.

3. Please refrain from coming over if you are currently sick and have not been symptom-free for at least 5 days, if you live with someone who is sick, or have been in close contact with someone who is sick.

4. If you smoke, we ask that you change your clothing and refrain from smoking prior to visiting, as a preemie’s lungs are very sensitive to smoke. Most RSV sites recommend against passive smoke exposure.

5.If you are parents to a baby or toddler, please refrain from bringing them to our house during RSV season.

Unfortunately we will not be attending many events during RSV season. Our goal is to make it through this and the next RSV seasons without contracting RSV or any other serious illness. His lungs are still very fragile until he is 2-years-old.

Please understand that this letter is not meant to offend anyone, just simply to provide an explanation. We hope you understand, and we appreciate your help keeping our baby safe.

Please pray for little Oakley!

There is a family that we met in the NICU that desperately needs some extra prayers right now. Oakley was born just a couple of weeks after Nate with a rare disease and a not so positive prognosis. Nate and Oakley left Boise within days of each other but instead of going home, Oakley was transferred to Seattle for a bone marrow transplant as his only chance for a cure. He and his parents have been there ever since. He was getting close to being released but had a particularly rough weekend and isn't doing well. His parents, Trevor and Sam, have been amazingly positive throughout this journey even with the knowledge that there is a good chance this disease will cut precious Oakley's life short. Please pray for little Oakley and his parents!
http://oakleysjourney.blogspot.com/?m=1

Ball of Energy

Oh my! This little boy is starting to keep me pretty busy. I can't imagine what it's going to be like once he starts moving! Here is what has been happening over the past couple of weeks.

Nate's famous half smile with the Elvis lip

This is one of Nate's neck stretches. He has started resting his hand back behind his head when we do them. 

We had this grand plan for family night this week. We thought we'd go for a car ride and Todd and I could take turns delivering Christmas treats. We did one before Nate passed out asleep.  Unfortunately, this happened at 6:30 so he was wide awake and ready to party late into the evening...lesson learned.

We've both been suffering from a pretty nasty case of cabin fever lately. This was our attempt at a walk. It took 15 minutes to bundle up and get him loaded into the front carrier and we were out for 10 minutes before we got cold. It's going to be a long winter...

My friend Mishelle was nice enough to take some 6 month pictures of Nate back in October. This one was my favorite! He has grown so much in the last 2 months!

My mom bought us this mistletoe a couple of weeks ago to hang up in our house and Nate loves it. He noticed it from across the room a few days after we hung it up and now this is what we have to do every time we walk under it. Since that happens about 50 times a day, my arms are starting to get pretty sore.

We attached this elephant to his play mat because he was getting pretty bored with his fishies. He pulls on them so hard and pulls them off but then doesn't know what to do with them once he has them. This elephant is one of those toys that you pull down and then it vibrates as it goes back up. He hasn't been very interested in it before because the vibrating scares him. So now he'll pull it down and then quickly let go while it goes back up. He'll do this over and over again for quite a while. Smart kid :)

His "talking" has moved to a whole new level lately. This went on for about 20 minutes while we ate dinner the other night.

He still loves playing on his mat on the floor but his head is starting to flatten a bit from 8 months of laying down so we decided to get him an exersaucer for Christmas. We totally cheated and broke it out last night :) It only took him about 5 minutes to figure out how to get it bouncing and he loves it!

8 months

Can you believe my Natey-bug is 8 months old? He is such a fun little boy and growing up so much. He is 15 pounds now and 24 inches long. He is still a short and chubby little thing :) He's close to 50% for weight and has managed to creep up to 10% for height. His doctor assures us he'll catch up but Todd is losing hope that Nate got some of the Johnson height (I'm pretty sure I am the only member of the entire Johnson family that is well under 6 feet tall...girls included). Poor kid...

Nate is getting so smart and learning new things everyday. We still cannot believe he is the same fragile little baby that we had 8 months ago. 

• He is still rolling over like a champ and so close to being able to roll both directions. He still has zero interest in rolling on to his tummy. He has no idea why anyone would want to go on their tummy on purpose. 
• He is starting to laugh! It is the greatest sound in the world :) He is very selective with what he laughs at but it usually involves daddy in some way.
• He can sit up very well. That is a big milestone for these micro preemies to meet since it is a good indicator that there aren't any problems like cerebral palsy. He still isn't steady enough to sit on his own for much longer than 10 seconds or so but we are very hopeful that even if he had motor problems, they would be mild.
• He talks all of the time! If Nate is awake, he is trying to tell you something. Even when he yawns, he has to let you know just how tired he is. He is a very dramatic yawner. (I'm still trying to get a video of this but everyone who has seen it thinks it's the funniest thing)
• Health-wise, we don't really have too much to update. We haven't been in to the doctor for a while and hopefully won't have another appointment until January. He does start his RSV vaccines sometime this month but we don't know exactly when yet. He will have to have a shot once a month until RSV season is over (usually April). Apparently these injections are $1500 per shot which is why they are only available for preemies and kids with significant respiratory problems. We are very grateful for insurance :)

All bundled up to go to Grandma's house. I love this little froggy hat. He looks so cute in it!

Here's a new dollar bill picture of my little monster. 

This is the very first diaper he used in the NICU. It was HUGE on him when he was born. We had to roll the top under and it still reached up to his armpits. 

This is one of my favorite things Nate is doing now. He LOVES to play with Todd! It's hard to hear and see but every time Todd growls at Nate, he squeals and kicks his legs so fast like he's trying to run away. These two play this game everyday.

This is Nate's other favorite game and one of the things that usually gets him to laugh. He started being really interested in playing with my hands while I feed him. The first time I did this he thought it was hysterical! Now he has learned that he can make all kinds of funny noises with my hand. Anytime I hold my hand up, he grabs it with both hands and immediately starts humming while bringing it to his mouth.

Nate desperately wants to feed himself. He tries so hard to get that silly bottle in his mouth but just can't seem to figure it out :)

7 Months and Moving

We have officially moved back to Pocatello! It has been a crazy couple weeks full of packing and unpacking. The most stressful part was finding out that we were moving 1 week before we were supposed to be out of our apartment. We own a house in Pocatello that we have been renting to some of our good friends while we were living in Twin Falls. They decided to move out this summer and we had been contemplating whether we should rent it again or try to sell it. Todd thought that he would look at a couple of jobs in Pocatello just in case and found a few that were pretty good but we didn't think any of them would work out. That was back at the beginning of September so when the 1st of November started getting closer, we had figured we'd be staying in Twin. Todd was offered a great job just 1 week before the end of the month and after much thought and hesitation, we decided to take it and move. We were so sad to leave Twin Falls. It has become our home and so many there have become our family. We have been supported so much over the past year by all of the wonderful friends we met. We are going to miss it!!

We moved last weekend and were able to have the week to get unpacked and settled in and feel much better about the situation now. 

Now for news on Nate. This little bug is 7 months old! He is weighing in at about 13 pounds. 13 pounds!!! Can you believe it?? He is growing up so fast and learning new tricks every day. 

• He is such a happy boy and is always smiling and talking to us.
• He has been a little stinker when it comes to eating lately. He is just so busy looking around and playing with his hands or bottle or my hands that he just can't be bothered with eating. Each feeding is at least a half hour ordeal!
• His hands are ALWAYS in his mouth. He has gotten very good at getting them straight to his mouth and he chomps on them all day long. 
• He has learned how to grab toys. Of course, they go straight to his mouth too :)
• He is rolling over. He has mastered rolling from his tummy to his back but can only roll to his left right now. He gets so pleased with himself when I put him on his tummy for tummy time and within 1 second he is looking up at me from his back. He smiles because he knows tummy time is up to him now!
• He is still sleeping like a champ but has not quite reverted back to his wonderful 7:30 am schedule since the move/ time change. He now wakes up between 5 and 6 and no matter what we try, we cannot get him to sleep later.
• During physical therapy we are really working with his neck at the moment. He has suddenly started having a hard time keeping his head up straight when he is upright. His head tilts to his left. It is most likely due to his strong preference for laying on his right side in the NICU so we knew it could be an issue  at some point. His little neck is tight on one side and weak on the other  so we do stretches and exercises with him throughout each day to try and correct it. 

My good friend Mishelle got the babies some super cute outfits from one of our favorite stores and Nate finally fits in it. He looked so handsome and I couldn't wait to get some pictures. (You can really see his head tilting problem in this picture)

He still loves his Mickey. He especially loves him now that he can hug him and slobber all over his face :)

New tricks

Sorry for the lack of blogging lately. My goal is to update each week but things just get so busy and I realize that it's been more like 3 weeks. I don't have too many excuses anymore though because we have a lot less appointments these days. We even had our very first week with NO appointments last week. Nate and I didn't know what to do with all of our free time. He actually got a whole week of uninterrupted naps. It was wonderful!

 Nate has been growing and changing so fast lately! He's 12.6 pounds now and so stinking cute :) He is a sleeping champ and has recently started sleeping through the night. He went from waking up once or twice to sleeping 11-12 hours over about a week. I think it has a lot to do with his physical therapy exercises that we have to do with him throughout the day. He is working very hard every day to try to catch up to all of his friends.

This is my favorite new trick of his. Every time he goes down for a nap, we rock in the chair for a minute or two and I sing to him. About a week ago he started singing along with me. Now he tries to "talk" every time we talk to him. I love it!

Mommy's turn to have a nap with the little bug.

 Mishelle came to visit this week and Nate loved her! He was very happy to just cuddle with her all afternoon :)

 He loves his monkey! Todd likes to put it in crazy places and see if he can get it. He didn't care too much about having his friend on his head.

This video is from a couple of weeks ago. Nate loves to play on his mat. He'd much rather be playing with his fish than any other toy right now. He's just learning how to reach for it and is trying so hard to grab it. He gets it every once in a while but can't figure out how to get it down.

Growing up

Nate is 6 months old this week and we can't believe how much he's grown! 

2 days

1 1/2 months

2 1/2 months

3 1/2 months

4 1/2 months

6 months
His leg now is about the size of his whole body when he was born. He's getting huge :)

This was the first premie outfit we put him in when he was 2 1/2 months old. It was huge on him in this picture.

Here he is next to the same outfit

And here are just a few more pictures from the week...

We got out his Bumbo chair last week and he loves it! I set him next to me while I eat at the table and he thinks he is pretty cool.

I used to babysit a little boy (not so little anymore) named Nate and he had a monkey exactly like this one that he absolutely loved. When we saw this monkey we had to get one for our little Nate too. He likes to lick his face whenever we put it on him :)

My mom got this outfit for Nate for Halloween but we are worried that he is going to be too big for it by the end of the month so we decided to use it as pajamas now. Doesn't he look so stinkin' cute!?!?