March for Babies

Our local chapters Wall of Wonder

Ian and the boys before the walk

What a great day. We were up super early so we could be out of the house around 8:15am. We got to the site around 8:30 and I had to sit and fill out my donation envelopes. Ian and I were able to raise $538.13!!! We plan on getting more friends and family involved next year. We'll have t-shirts made and start our fundraising earlier.

The kids were really good. They had face painting, decorate your own cookie, a duck pond game, and a raffle booth. We met our local chapters ambassador who had 2 micro preemies and had gone through a lot of the same things we had gone through. I can't even begin to tell you how nice it felt to be surrounded by people who had gone through NICU stays and understand the roller coaster ride involved with micro preemies. We saw a bunch of the NICU nurses that helped care for the boys. The walk started at 10am and it was a 3 mile walk (a continuous loop so that we didn't have to walk back after finishing the walk). It was HOT! I carried Leah on my shoulders for about half of the walk.

When we got back, everyone was greeted at the finish line with a cup filled with candy and coupons and then Subway and Domino's donated a bunch of pizza and hoagies. It was already 88 degrees out when we got back and the kids were tired so we got our food, said goodbye to a few people, and headed home. It was very nice and well organized and it was somewhat healing for me.

Ian and I would both like to thank everyone so much for their donations. Without research that the March of Dimes has funded, our boys (and many other children) may have a very different story.

Addison and me after the walk

Addison
Riley

Posting from our new house!

So, last Sunday, we had a bunch of awesome friends help us move. We moved into my moms house, which is only a mile or so from our old townhome. My mom moved in with her boyfriend and she offered to let us rent her house. We put our house on the market and it took just under 6 months to sell but as of yesterday afternoon, we no longer own the townhome. Our new house is perfect for us. 4 bedrooms, huge basement, a yard (we'll have a veggie garden and we're planning on getting a small swing set), and our big kids already know a bunch of kids on the street. Skylar has 2 good friends who live almost directly across the street from us. We didn't have to change schools and we'll actually be saving money because our rent is less than our old mortgage. Yay! Hopefully we'll be unpacked before the boys big birthday party in June, lol.

Onto the boys...They're doing GREAT! They're both finally healthy and back to normal. I can't tell you how happy I am that they're not sick. We've resumed weekly physical therapy sessions and I think being sick for a month set them back a little.

It's early and I almost forgot a big "first". This past Wednesday, they both started eating baby food! They're 10 months old (6.5 months adjusted) and they are able to eat infant cereal so I thought they're ready to start with some real food. They had organic carrots and they loved it! I bought a few different fruits and vegetables so we'll slowly experiment and find out what they like and don't like.

So, this is the last time I'll post about this (until next year) and I know I've e-mailed some of you about this but I'll take this opportunity to talk about the March of Dimes one more time. Tomorrow, Ian, myself, and all 4 kids will be participating in the March of Dimes March for Babies. We'll be walking 3 miles tomorrow (the high for tomorrow is 88, yikes!) and helping to raise money for the March of Dimes. The March of Dimes works hard to raise money to understand the causes of prematurity and birth defects. March for Babies offers hope by raising funds and they use 77% of every dollar donated for lifesaving research, education and innovative programs that offer hope for preventions and solutions for babies born too soon or with birth defects. If the money Ian and I help raise prevents just one person from going through a NICU experience like ours, we've accomplished our goal.

So, the walk is tomorrow and we've almost met our goal. I'm asking you to please consider making a donation to sponsor our walk. No amount is too small. I will be taking lots of pictures and I will be sure to share them with on here.

Here's a recent picture of the boys. This is from Tuesday afternoon. We took a walk to get Skylar off the bus since it was his first time on his new bus.

Back to the doctor today

As I carried the boys into the pediatricians office, I joked with the nurse that I was just going to move into the room. Riley is coughing up a storm and he's making himself vomit. Addison started with a fever this morning and is starting up with a cough. Turns out Riley has an ear infection (his ears were fine at the doctor on Tuesday) and she tested Addison for whooping cough. The cultures take 3-4 days to come back and she said the culture is most likely to come back positive if you test in the first few days so she didn't bother to test Riley. She called them both in a prescription for azythromyacin (or something like that, I can't even read the label because of all of the warning stickers) and said that it's better to start treating them now. It will also work for Riley's ear infection so we don't have to add yet another medication. I was told to stop giving them Xopenex for now since it doesn't seem to be helping but they're both to get Pulmicort twice a day to help keep their lungs open.
The good thing is that Riley's chest didn't sound tight, he wasn't breathing heavy, and he's not wheezing. Addison had just a small wheeze but she thinks the Pulmicort will help that. So, while it's horrible that they're sick, it doesn't look like we'll be in the hospital again soon. When they fall asleep, they don't really cough so right now, they're both resting comfortably.
Please keep your fingers crossed that this all ends soon. It's been 3 weeks of this and I think I've reached my limit.

Home but not yet healthy

Riley and I got home from the hospital Saturday evening. Although he's still sick, he was able to keep his oxygen saturation above 90, without getting extra oxygen, and they let him come home. As we were walking out of the hospital, our realtor called us with an offer on our house. We spent most of the weekend going back and forth until they accepted our final offer Monday night. We'll be out of this place in just over 2 weeks (settlement on the 24th).
So, Tuesday morning, Riley woke up and had a fever of 102.5. I called the pediatricians office right away and we were in there for another visit an hour later. He wasn't wheezing and his lungs sounded clear but we were sent for chest x-rays just to be safe. His x-rays came back clear and we were told to just give tylenol for the fever. We're fairly certain that he picked up a bug while in the hospital. He was in an isolation room (anyone coming in had to wear a gown, mask, and gloves) but I guess, no matter how hard you try, germs will be spread. He's slowly getting better. His cough is just about gone and he's getting regular breathing treatments of both xopenex and pulmicort which seem to help.
The same weekend that we move, is the March of Babies. I really hope everyone is well enough so that we can walk as a family. I met with one of the regional March of Dimes ladies this morning. She gave me lots of great info about the walk and tons of fundraising ideas. So far, Ian and I as a team, have raised $169. My personal goal is $250 and I've got $143 so far. There's about two and a half weeks left before the walk. You can click on the banner to the right to make a donation. No amount is too small. Our local branch is currently trying to get a NICU support group formed in the hospital where the babies were born. This would have been fantastic for me back when the boys were in the NICU. I'm excited that this is in the works and I'll be one of the first people to join the group.

Another night in the hospital

Hopefully this will be my last post from the hospital. Riley is doing much better but he's still hanging onto the last little bit of oxygen and he can't go home until he maintains his O2 levels without the use of oxygen. He's on 0.1 litre of oxygen, which is basically nothing. They weaned him down throughout the day and hopefully by morning, he'll be on room air. We've seen a few of our old NICU friends and it's nice to "show off" Riley to them but I wish it were under different circumstances.

As of this morning, he has gained 3oz. since he was admitted. The pediatrician was concerned that he would not be able to nurse enough and said that if he didn't gain weight, they may have to give him an IV. He has been nursing like a champ!

Everyone here has been great. Riley has been a ham and the nurses all love him. He's starting to act like himself again. When we got here, he wanted nothing to do with anything except being held by me. Today, he's laughing, smiling, and playing with his toys.

So, it's now after 10pm and I've got to try and get a little bit of sleep before the respiratory therapist comes for his next breathing treatment. Riley still gets them every 3 hours and the ora-pred twice a day.

Still in the hospital

Looks like we'll be here at least until tomorrow. He is starting to sound better and he has been coughing a lot less. He's getting breathing treatments of Xopenex every 3 hours and he's getting ora-pred, by mouth, twice a day. Overnight, his oxygen was turned down from 1 litre to .5 litres and he is still maintaining his O2 sat. When the pediatrician came in this morning, she tried to turn it down more and his sat dropped. We're going to try to turn it down a little bit more and hopefully before tonight, we can take out the cannula and monitor him overnight.
I miss being home and I'm sure Riley feels lost without Addison. Ian has been holding down the fort at home and they seem to be helping and not getting too crazy.
Riley just woke up, I'll update again if there's any new news.

In the hospital with RSV

Well, we thought we got through RSV season but it looks like we couldn't avoid it. Riley's cough started to get worse yesterday so I took him into the pediatrician. He sounded ok and I was given a prescription for some sort of presnidone. Gave that to him twice yesterday and he coughed so hard that he threw up. His cough started to sound wet so I called the after hours number and talked to the pediatrician on call. He told us to come to the ER for a chest x-ray and a stronger nebulizer treatment.

We got to the ER around 11pm . Chest x-ray was clear but Riley had an uncontrollable cough and his chest was really tight. Finally, around 6am, the doctor told us that his RSV test had come back positive and that we were going to be admitted. We got up to the pediatrics wing shortly before 11am and Riley is finally sleeping comfortably. He has a nasal cannula to keep his O2 sats up and we're planning on being here at least 2 days.

Ian is at home with the kids and luckily I can use a hospital grade pump while I'm here so I can keep up my supply for Addison.

I've got to get a few things done before he wakes up. Please keep him in your thoughts.