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.

Now it's Riley's turn

Friday, Riley started with a cough and sneezing. He's wheezing and has a runny nose. I was shocked that he wasn't sick after being so close to Addison but I guess it just took him a few days to show signs. He seems to be handling it a little bit better than Addison did. Addison still has a slight cough and they're both now getting nebulizer treatments.
When I took Addison we were given a prescription for Xopenex. It's the same stuff they got in the NICU and it's similar to albuterol, without a lot of the side effects. Their pediatrician called in enough for 48 treatments and 2 refills. I can't wait for them to both be healthy again.

Addison is still sick

I just finished giving Addison his first nebulizer treatment. His cold seemed to be steady and today he wasn't getting any better and towards the evening, he started to get worse. He's got a horrible cough and still clear snot. He's a little bit wheezy but it's not in his lungs (that I can hear anyways). He slept most of the day and his temperature has been around 99.5. I thought his condition warranted a call to the on call doctor and she thought he would be ok to be seen in the morning. There's a bad stomach virus going through our hospital and we didn't want to risk exposing him to anything with an already weakened immune system. She said that when I come in, they'll try a nebulizer treatment and that if he responds, they'd send me home with a machine. I told her that I already had albuterol, saline, and a machine from my daughter so I was instructed to try a treatment to see if it helps.

Addison was really intrigued by the mask and the steam coming out. It seems to have helped a little bit. He's not wheezing as much and he is acting a bit happier. He's very raspy from coughing for days and he's not showing any signs of RSV. The on call pediatrician will have the nurse call first thing in the morning to schedule us an appointment. We still haven't heard any results from his culture on Sunday. I guess no news is good news.

Our first cold and Marching for Babies

Saturday I noticed Addison coughed a few times. Yesterday he woke up and I suctioned some clear snot out of his nose and he seemed to be coughing every few minutes. I called the pediatrician and we were able to get him in around lunchtime. Have I mentioned how much I love that my pediatricians office is open 7 days a week??? So, Dr. Moffit, the boys regular pediatrician happened to be the one working this weekend. Addison had a low grade fever of about 100.3 but his lungs sounded clear and his breathing is completely normal. He has a cough, a runny nose with clear snot, and sneezes every so often. Dr. Moffit was not worried about RSV at all. He took a culture from each side of the nose and I'm patiently waiting to hear back. We should be hearing from them at some point today. He said it looks like a regular cold and possibly some allergies. He's still able to breathe through his nose and he's nursing fine except for when he coughs and gags. He's still his happy self.
I'm waiting for Riley to start with a cough and I'll be shocked if he doesn't get sick. We've had a few scares but this is our first "official" cold and I hate that he's not feeling well.

On another note...notice the new banner on the side of the page? If you click on that, it will take you to my sponsor page for the March of Dimes March for Babies. The March of Dimes is a fantastic organization that helps prevent birth defects, premature birth and infant mortality. They fund research, education, and advocacy so that one day, all babies will be born healthy.
Every year, they have a fundraiser called the March for Babies. This year, our family will be walking, not only in honor of Addison and Riley, but also in honor of our oldest son, Skylar, who was born at 32 weeks gestation. Please consider making a donation to help sponsor our family. Every little bit helps.

Finally some time to write

So, it's 5am, and I finally have some quiet time to update. So many things have happened in the past few weeks. Every time I try to sit down and type, I get interrupted and then my list of stuff to write about grows and it's hard to find time to just type.

So, where do I begin? The boys are doing fantastic! They both ran a few low grade fevers but I'm now convinced it was due to teething. They never ended up with colds or any other symptoms of being sick. They still haven't had teeth come through the gums but they're getting close. They both chew on their hands and toys. They're both able to hold toys which is awesome. They're tolerating tummy time better so they're working on pushing up. They roll from belly to back with ease. Riley can almost roll from back to belly. They're both still working on sitting and can stay upright for about 10 seconds.

Riley has been working really hard to catch up to Addison. He not only does everything that Addison does (he used to be about 2 weeks behind in development) but he is practically the same size as him! We had to go to a WIC appointment yesterday. Because the boys are considered "nutritionally at risk" I have to take them for weight checks for every appointment. Now, they weigh them with their clothes and diapers on but the boys were wearing the same outfits. Addison weighed in at 10lbs. 8oz. and Riley was an amazing 10lbs. 4oz.!!!!! At 9 months, they're finally passed the 10lb. mark! They're almost doubled in length since birth.

Riley had his first taste of rice cereal on the 15th. He didn't seem to like it as much as Addison. Addison has had it a few times now and he opens his mouth for the spoon and manages to get most of it in his mouth.

The boys went in for their last round of RSV shots on the 6th. RSV season is "officially" over in the beginning of April. We were given the ok to slowly venture out into the real world. I have spent much of the past 6 months, inside my house. Ian and I had been waiting for the day when we could do something as a family. We ended up going to a big pet store in Lancaster to pick up some stuff. We had an open house and we had to be out for a few hours. The big kids got to touch stingrays and as silly as it sounds, it was SO nice to be out, as a family.

Physical therapy is going great! Their therapist hopes to have them crawling (not necessarily on their hands and knees but at least creeping around on their bellies) by their birthday. I just can't imagine these guys moving around but I'm excited that they're developing as expected.

They're still nursing wonderfully. Most days I feel like all I do is sit and nurse but I wouldn't have it any other way.

One of the other big things is they're sleeping in their bassinet!! No more carseats and no more reflux problems!!! Often times they end up cuddled against each other.

Things are just going really, really well. They're happy babies who make me smile and laugh every day.

Small update with lots of pictures

I know this blog has been neglected over the past few months. Life seems to be flying by and it's quite a task to try to sit down and type more than a few sentences.

Last weekend, Addison gave us a little scare. Saturday evening, he spiked a fever. His temperature was 101. The pediatricians office was closed for the day and he didn't have any other problems so I decided to just wait and see how he was the next morning. Sunday morning we woke up and his temp. was 102.6. I had to wait 2 hours for the pediatricians office to open and then another 2 hours before they could see him. He had no other symptoms but I spent that morning freaking out. Both of the big kids are getting over some pretty bad colds and croup and I was certain that Addison was getting whatever the big kids had. We finally got to the peds office and it was determined that it was just a mystery fever. She said it could be from his teeth coming in, a late reaction from the dtp shot he had got 2 days beforehand, or a random virus. She also said that it could be the start of something more and that I just caught it too early. She told me to give him Tylenol as needed and if the fever lasted more than 24 hours, to bring him back. Well, we got home that afternoon, I gave him a dose of Tylenol, and he hasn't had a fever since.

Other than that fun event, the boys have been doing well. Their physical therapist is happy with their development so far and we've moved from working on their rolling to working on them sitting unassisted. They can both sit for 5-10 seconds before they start to fall.

They're both overall happy babies. They are almost always smiling and they babble all of the time. Almost every time they lay next to each other, they try to steal pacifiers.

Addison got to have his first taste of infant cereal. He managed to eat a little more than half. Riley still hasn't had his turn yet. His head control is just a little bit behind Addison's and I thought it would be better if I wait until he's a little bit stronger.

And, here are a few pictures of Riley. He's started sucking on his fingers. If I try to give him his pacifier, he pulls it out and puts his first 2 fingers in his mouth.

8 months old

It's so crazy to think that my boys are already 8 months old. Today we were at the pediatricians office and there was a baby girl who was crawling all over the waiting room, sitting up, and just too darn cute. She had these adorable chubby cheeks and looked huge compared to my boys. The mom and I chatted for a few minutes and I found out that her daughter was only a month older than my boys and then I kind of got a reality check. Although my boys are making huge progress and they look huge to me, they'll never be "normal" babies and it makes me kind of sad. I know that in time, they'll hopefully be doing all of the things that other babies do. Leah, my daughter, was walking at 9.5 months. And, I know, all babies develop differently, blah blah blah, it doesn't make it any easier. Although they're having a much different start to life, they're perfect and I'm more than thankful that they're alive and healthy.
So, enough of my ramblings. The boys had their 8 month well visit today. They were actually 8 months on the 17th. I had mentioned to Ian a few times that I was sure the boys were going through a growth spurt. I spent 3 days literally sitting on the couch and nursing. They were eating every hour and a half. I wasn't surprised that when they were weighed, Addison was 9lbs. 10oz. and Riley was 8lbs. 14oz. Riley is 20.5 inches long and Addison is 21 inches. The doctor was really happy with their growth and development. In fact, he was so happy with their progress that he doesn't need to see them back until June! He also told me that I could start trying to give them some infant cereal. I plan to try small amounts of cereal, mixed with breastmilk, and we'll see how they do.
They're still getting weekly visits from the physical therapist. They're both easily rolling from belly to back and they're doing a small amount of back to belly rolling. They will both sit with some assistance and the therapist and I are working hard to get them sitting unassisted. They're both very funny. They coo and babble, and the LOVE diaper changes. They are both really ticklish and whenever you change their clothes or diapers, they crack up. I've been trying to get video of them laughing so I can share on here but they get distracted by the camera.
So, all in all, things are going well. Even though they're not on the go yet, they keep me very busy. I think everyone is looking forward to the warm weather so we can spend time outside.
It's getting late and I've got to finish writing and try to get some sleep. I will post some new pics before the end of the weekend. My grandparents just moved back up here from Florida and they just adore the boys so we're planning on visiting this weekend (which means lots and lots of pictures!).

Growing more and more

I wanted to write a lot earlier tonight so this may be shorter than I had planned.
The twins went for their Synagis injections today. Addison was 9lbs. even and Riley was 8lbs. 4oz. It seems like they nurse all of the time and I was actually expecting that they'd weigh more but I'll take a one pound gain in just under a month! Riley like to sleep next to me and just nurse/snack all night. Just the other day I mentioned to Ian that Riley seemed to have gained a good amount of weight.
I'm trying to transition them into their pack and play so that I can put it next to our bed and then we can do away with the car seats and me sleeping on the couch. Their reflux is so much better and they actually are able to nap in the pack and play. They only have trouble right after they've nursed for a long time.
So, they're both doing well with their physical therapy. Addison easily rolls from belly to back, in both directions. Riley has his good and bad days. He rolls if he's well fed and rested.
Addison has really started to grab things. He'll sit in his bouncy chair and grab the toys and bring them to his mouth.
They're both babbling a lot. They laugh at each other, and at the rest of us. They're ticklish and they crack up for something as simple as a diaper change. They both make the cutest little noise. It sounds like they're saying "A-keyh" and they just do it over and over again.
I've got some pictures from the past few days that I want to share but my camera card is not in my computer so I'll have to post the pics tomorrow.
I'm sure I'll remember things that I wanted to post but for now, I've got to get some sleep.

Sharing some cute pictures

It's late and we've all had a long day and night but I really wanted to share some of these pictures from tonight.

The boys go for their RSV shots on the 4th so I'll have a nice long entry to type, including current weights.

Addison was enjoying some milkies out of a Steelers bottle

Riley was too interested in watching the game

And, our first full family photo. I put my camera on the mini tripod, sat it on top of the entertainment center, and used the timer.