X-ray results are in

So, I spoke with the pediatrician this afternoon and he said the x-rays came back normal. The sutures are still open but there's no swelling or fluid causing them to be open. It's just that they haven't closed yet and he said that they should close by the time their soft spot closes (which is usually between 15-18 months in full term babies but will likely be closer to 2 years old for our guys). So, despite all of that, he's still going to talk to a pediatric neurologist to get a second opinion from someone who specializes in this. He said as soon as he talks to him, he'll let me know but he's confident that no further action will need to be taken.

Birthday party fun and on with life

We all had a great time this past Saturday. We had some of our wonderful friends and family here for most of the day to celebrate Addison and Riley's birthday. Ian made delicious food and everyone left with a full tummy. Thank you again to everyone who came to celebrate!

The boys each got a small round cake (they were free when you buy the big cake) and tonight, we're going to let them dig into them. It was too busy at the party to try and get them set up with their cakes.

As the last guests were getting ready to leave, the rain had stopped and there was this beautiful rainbow glowing over our development!
This past Friday, the boys had their 1 year well visit with the pediatrician. Addison weighed in at 11lb. 6oz. and 22.5" long. Riley has finally passed Addison and he weighed 11lbs. 8oz. and was 22.25" long. They're doing really well with the new formula that the doctor gave us. They're still nursing at night but it was really time to start supplementing. I literally nursed all day long and since I started supplementing, they're eating and gaining better. I'm very pro-breastfeeding but I'm ok with supplementing. I worked hard to breastfeed micro preemie twins, exclusively for 11months, and I gave them a fantastic start.

So, back to the ped. visit. Ever since they came home, both boys have had these veins running down the sides of their heads. And, ever since they've been home, I've been able to feel almost a little bump where those veins run. I didn't say anything before because I assumed that as their skulls closed, it would get better. I finally said something and the pediatrician has ordered x-rays to see if it's just the veins that we're feeling or if the sutures are open in the skull. If the sutures are open, we'll be sent for an ultrasound to see the cause and then possibly referred to a neurosurgeon. He strongly believes that it's just the veins but he wants to just be 100% sure. They're not displaying any other signs of hydrocephalus (I am sure that's spelled wrong) but I think that is his major concern if it's not just the veins. Of course, I'm scared. How could you not be. We go for the ultrasound at 9:45am tomorrow and I'm really hoping that it will be for nothing.

We hit one year and I finally felt like I could breathe a little bit easier. We got through RSV and then another cold, they were making progress with physical therapy, and then something else pops up.

So, please keep them in your thoughts tomorrow. I'll post an update as soon as I have any results.

Today is a very special day!

HAPPY FIRST BIRTHDAY ADDISON AND RILEY!!!

Can you believe it's already been a year?? Neither can we. So much has happened and the boys have come such a long way. One year ago, the babies were born and we didn't know if they were going to make it to the next day. We've survived 3 months in the NICU, a seemingly endless amount of doctor appointments, weeks of physical therapy, and so much more.

They are happy and healthy and making incredible progress thanks to a great physical therapist. They love their toys and their brother and sister.

So many of our friends and family have helped us over the past year and this weekend, we not only celebrate Addison and Riley's birthday, but we're celebrating all of the people who have been there for us. Ian and I are throwing a huge party. We're asking everyone that, instead of gifts, they consider making a donation to the Reading Hospital Neonatal Intensive Care Unit (NICU) in honor of the boys. The staff there is awesome and they truly care about their patients. They are the reason Addison and Riley are here with us and Ian and I will be forever thankful that the doctors and nurses are so dedicated to their jobs.

If you're interested in making a donation, you can get more information here. http://www.readinghospital.org/oth/Page.asp?PageID=OTH000007

A year in numbers:

Addison:

Birth weight: 1lb. 5.2oz.

Length: 12.25"

Days in the NICU-81

Addison's NICU stay bill: $363,831.32

Days on apnea monitor: 75

Physical therapy sessions: 25 and counting

Riley:

Birth weight: 1lb. 3oz.

Length: 12.25"

Days in the NICU-87

Riley's NICU bill: $379,517.09

Days on apnea monitor: 27

Physical therapy sessions: 25 and counting

Trips to the ER: 1

Days in PICU with RSV: 4

And because I can't even begin to sit and figure out who had which appointments, here's a combined total for the past year:

Pediatrician appointments: 30 (along with a $20 copay per visit)
Opthamologist appointments: 14 (with a $30 copay each)

Addison 6-17-09

Riley 6-17-08

Riley (L) and Addison (R) 6-17-09

Something new and exciting!

LOOK AT ADDISON!!!

Yep, he's SITTING!!!!! Actually, they're both sitting. They're not fully unassisted but they're able to sit alone, for a significant amount of time before falling over or forward. I'm so incredibly proud of them and I had tears in my eyes during their physical therapy this afternoon. Just last week, I talked to Matt (their therapist) about how I feel frustrated that we're not making more progress. They have really struggled since getting sick way back in March. They really slowed down their progress and it was very hard to look ahead and remain positive. They're still trying to get rid of whatever bug they have. They're doing much better and only need the nebulizer in the morning and before bed. They have one more day of Ora-pred and a few more days of antibiotics for their ear infections. They're shaping up to be in perfect health for their big birthday! Hopefully we won't be back to the doctor until June 19th, when we go for their 1 year well visit. Their weight gain has slowed since they got sick so we've started supplementing with some formula. Mostly while Ian is home with them. They just can't eat enough. They're drinking 5-6 ounces every 2-3 hours.

And, as you can tell, I've changed the look of their blog. I had always thought the green was dark and kind of dreary so I found something a little lighter and less gloomy. That picture up at the very top of the blog is Addison when he was 1 day old. It's crazy to look at pictures from their early days and see how well they've grown.

Both boys are awake and ready to play so that's all for now.

Riley used my hair as a handle

Addison enjoying his Bumbo seat

Both boys during physical therapy

Still battling with germs

Sigh...if I never stepped foot into a doctors office again, I'd be thrilled. Friday I took Addison in for his fever and he had an ear infection. He was put on antibiotics. Saturday was a pretty easy going day, the boys seemed to be showing improvement, Skylar went with a friend to some farm in Lancaster, and Ian put together the kids swing set.
Sunday, I had to take Skylar to the doctor because he had a huge red ring in the middle of his back. He's now on 20 days of antibiotics for Lyme disease. Yesterday, I had to take him to a minor emergency place to get an x-ray of his ankle because he wasn't able to walk on it for 2 days. Luckily, it's just a bad sprain and he just has to take it easy for a week.
The past 2 nights, the boys have had a tough time sleeping, even being upright in their car seats. They're still getting Xopenex and Pulmicort, although, I have to admit that I eased up on the breathing treatments since they seemed to be doing better.
Today, they both had coughing fits so bad that they turned red and couldn't take a breath. I cancelled their therapy for a second time in a row, and hauled them to the doctor.
Riley now has an ear infection and Addison's ear infection looks worse. They were prescribed a stronger antibiotic and some more Ora-pred just to help them get all of the gunk out of their lungs. The pediatrician wasn't worried about pneumonia because she could hear the phlegm moving when they breathe. This has been going on for about 3 weeks so hopefully they're fully recovered before their birthday. Their last round of RSV had them sick for about 5 weeks.
It will be very nice when Skylar is finished school for the summer so that we can take a break from sharing kid germs.

Blogging from bed

The boys are both sleeping soundly in the co-sleeper and Ian is downstairs so I finally have a few quiet minutes to focus my thoughts. Ian and a neighbor spent 8 hours today putting together a swing set for the kids. He's sunburned and tired and I'm exhausted from trying to keep the kids happy inside while this cool new toy was being built outside.

The twins both still have colds. We made 2 more trips to the pediatrician this week. Both boys went on Monday because they both spiked fevers Sunday night. Friday, Addison still had a fever of 102.5 so after Leah's end of the year preschool picnic, I hauled the crew to the pediatrician again only to discover that Addison has an ear infection. They're both slowly getting better but we're still doing nebulizer treatments every 3 hours with an additional breathing treatment of Pulmicort, twice a day. Riley had to take Ora-pred for 3 days because he was very wheezy but thankfully, he's just got a nagging cough now. They have their 1 year well visit in about 3 weeks and I'm really hoping to not go back before then. The receptionist joked with me about going broke paying co-pays.

I cancelled their therapy this week because they were both so sick. I just didn't want to stress them out any more than needed. Their therapist will be back on Tuesday and I'm going to bring up some concerns I have about their development. I kind of feel like we're at a standstill and I'm wondering if I'm just getting impatient or if there's more that could be done to help them.

Today, I had Addison sitting pretty well. He had trouble staying balanced anytime he coughed but in between coughing fits, he was sitting on his own.

I'm starting to fall asleep so I better shut down for the night. You learn to take sleep when you can get it. If I fore myself to stay up, I'll get so tired that I can't keep my eyes open and then the babies will both wake up to nurse.

11 months old tomorrow

I finally have a few minutes to write. As you can see, I've changed the blog a little bit. I'm still playing with it a little bit but ultimately, I want it to have a more personal look.

It's hard to believe that in one short month, we'll have 1 year olds. The time seems to be flying by. We're gearing up for their big birthday party. We've had such a big year and we can't wait to spend the day with all of our friends and family who have helped our family.

Riley is sick again. He has a cold and a cough. Luckily, he hasn't had a fever or trouble breathing. I started giving him Xopenex because he was a little wheezy and yesterday, I added in the Pulmicort. Today he started to have a wet cough so I took him to the pediatrician who said to do what I've been doing. It's not in his lungs and as long as he's acting fine, the nebulizer treatments are fine. She called in a prescription for Prednisolone but it tastes horrible and Riley vomited instantly both times that I tried to get him to take it. Hopefully, a week of constant nebulizer treatments will help it pass without any additional problems.

Both boys are still slowly making progress with their physical therapy. We're still working on sitting. I'm still holding out hope that they'll be sitting, unassisted, before their birthday. I try to work with them daily and they seem to love the stretches and different exercises.

They've recently taken a huge interest in toys. They grab them, put them right into their mouths, and shake them.

Well, Riley just woke up to eat so I've got to end this.

Back from another opthamologist appointment

I was so excited back in January when I didn't have to come back until May. Of course, in the back of my mind, I worried that if we weren't going monthly (or bi-monthly or weekly as it was for a little while) that something would go wrong and it would be months before it would be noticed. Our original appointment was the same day as our settlement on the house so I had to reschedule. It made me nervous because it was just that much longer until they would find something wrong.
So, today I got the boys their baths and got them ready for their appointment. When I got there, I was thrilled to find out that they didn't have to have their eyes dilated. They hate getting the drops in their eyes. The nurses all know the boys and come visit and they were shocked at how big the twins were. We got right into a room and Dr. Klombers came in pretty much right away. He examined both of them and just kept saying "They beat the odds". He also called them "carbon copies" lol. He asked me their birth weights again and when I told him 1lb 5oz. and 1lb 3oz., he was amazed. They have NO lasting problems from being on oxygen for 2.5 months. They have perfect vision. We were pretty much guaranteed that they would need glasses and Addison was at the absolute limit with his ROP where he almost needed laser surgery. And, they're fine. As I was talking to Dr. Klombers, I had tears in my eyes. Just another hurdle that we've jumped and an odd that they've beaten.
We go back in 1 year for another check-up and if everything is still ok at that appointment, we won't need to go back for 2-3 years!!!
Just when I start to get discouraged that they're not "more like normal babies", I get reminded at how incredible and lucky my boys are.

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.