whew...where do I begin?

We were all sick last week. It took me out of commission for 2 days and the rest of the week, I functioned at a minimum. Everyone seems to be just about better except for Riley. He's still got a nagging cough that caused me to drag out the breathing machine. We're doing Xopenex twice a day for now.

We've finally switched out all of the 3-6 month clothes for both 6-9 AND 6-12 month sizes! Addison can actually fit into some 12 month clothing. The 3-6 month stuff had been getting too small for a while but I really didn't want to change out everything and then have to do it again when the weather got cooler. Last year, I bought them both adorable Christmas outfits on a super clearance that are size 12 months. I'm actually concerned that they might be too small.

The boys had their 15 month well visit at the pediatrician last Tuesday. Riley weighed 14lbs. 4oz. and was 23.5 inches long. Addison weighed 15lbs. 7oz. and measured 25 inches long. I had so many questions for the pediatrician that for the first time, I brought a notebook with me full of questions. I asked about the boys shaking when they get startled out of sleep and he wasn't concerned at all. I asked about starting dairy (they either needed to get an ok to start dairy or a prescription for special formula to keep getting WIC) and I was told to go ahead and start giving dairy but to make sure I give them yogurt with probiotics. We talked about their head x-rays that they had done a few months back. Their suture lines still aren't closed but the x-ray indicated everything was normal and the ped. and a neurologist both agreed but want to continue to watch and make sure they close when the soft spots close.

I also asked about their progress with physical therapy and he said he wanted them to get more aggressive therapy. It worked out nicely that today was their 1 year evaluation for Easter Seals/Early Intervention.

So, at today's evaluation, a team of 3 people came out to do a bunch of tests. The boys tested anywhere from 6-9 months in all of their tests so they more than qualify for therapy still. I think we all know it would happen but it's always such a slap in the face when you hear someone tell you that your 15 month old babies are functioning at a 6 month old level.

Ian and I mentioned that the pediatrician wants more aggressive therapy and we all (eval. team included) agree that they need it. They're now set to have 3 therapists a week, for an hour per child. They'll have a new physical therapist which is kind of bittersweet but I think it's the right decision. This therapist works specifically with babies and preemies and was thrilled to be able to take the twins case. They'll be getting a speech therapist. This lady was also delighted to get micro preemie twins. She'll initially start working with them to learn to eat new textures and we'll transition into making sounds and eventually words. Lastly, we'll be getting an occupational therapist to help with their fine motor skills. We're not sure who it will be yet but we hope to hear within the next week.

So, tomorrow will be our last session with our current physical therapist. And, for the record, I think he's an awesome guy but I just don't feel like he's able to push the envelope as much as we want. And, he only has openings in the evenings which really sucks for us.

So, we all agreed that this is the time to start pushing them harder. They've had a year to grow and get the basics down, and now we want to see them do more.

9-19-09 Addison is "Big Bro" and Riley is "Little Bro"

9-20-09 Riley in the black hat and Addison in the Steelers hat

9-28-09 Getting ready to go on a walk. Addison in the red, Riley in the blue

1 year ago

While the people, including my family, remember the events that took place 8 years ago, today is also a reason for my family to celebrate. Last year, on 9-11-08, Riley was discharged from the NICU and for the first time, our whole family was able to be together. I remember all of the memorials that were taking place and everyone talking about remembering 9/11 and I was filled with joy as I marched out of that NICU for the last time.
It certainly feels like our family has been complete for more than a year. So much has happened. A clothes company, Little Me, sent me 2 outfits for the babies over the summer. When I opened them, I began to cry. It was 2 of the same outfits that they had worn in the NICU, only in 6/9 month size. They're finally fitting into 6-9 month size clothing and 2 days ago, I put Riley's outfit on and cried. I was sad when we unpacked all of his NICU stuff and realized that this outfit wasn't there. I mean, it would have gone back to the NICU when they outgrew it but it was an outfit that Skylar had picked out and just looked so incredibly adorable on my little guy. Back then, we had to roll up the sleeves on his preemie sized outfit and his legs barely reached into the leg holes. To think back then, that they would fit into something bigger was a stretch of the imagination.
It's funny how something as simple as an outfit can bring out so many emotions but for me, it did. This was the only picture I took, and of course you can't see it, but next time he wears it, I'll be sure to post a picture. I laid them down in the co-sleeper to take a shower and when I came out of the bathroom, this is how I found them. Addison is on the left and Riley is on the right.

It's quite a difference from a year ago:

They're both doing so well. Addison is working on his one upper tooth, just on the opposite side of Riley's. They're both rolling all around the floor and pushing themselves up. They can both get onto their arms and knees but as soon as they try to get anywhere, they kick out their legs. Addison is able to sit again, as long as he has his hands down in front of him.

They go back to the pediatrician on the 22nd. I can't wait to see how big they are! They have the whole evaluation team coming out on the 29th to do a 1 year evaluation. I know they'll be considered very delayed in a wide range of stuff and possibly need more therapists, but I'm ok with that. They're making progress and they're taking their time. As long as we know there's no known reason for their delays, other than being early and still very small, we know they'll get there when they're ready.

Lots of new stuff happening

Is it bad that I had to read my last entry to see what all I've forgot to share over the past few weeks? Our busy summer is coming to an end and Skylar starts school tomorrow, Leah starts another year of preschool in 2 weeks, and football season seems to have taken up all of our free time. Skylar is playing his first year of tackle and he loves it! He's the secret weapon of the defense and he's not afraid to take people down.

So, after Riley rolled a few times, he didn't do it again. Ian stayed home August 17th and we were sitting on the floor with the babies, trying to encourage Riley to roll when all of the sudden, Addison rolled! Riley never did roll that day but Addison has been rolling ever since. As a matter of fact, when you lay him down, he rolls within minutes and he pushes himself up. He's not crawling yet but he has got up on his hands and knees a few times. He does roll around the room and kind of pushes himself with his feet. I don't want to call it crawling, but he gets around without help. He's also starting to sit in a tripod again! As he's pushing himself up, his arms are getting stronger and he can sit and prop himself up with his arms. He can actually stay there fora minute or two. He's eating a lot of food, often finishing a 4oz. jar. He loves his apples and pears. He's babbling a lot and making lots of sounds. He has his favorite toy and will fight Riley for it.

Riley eventually did start rolling and he rolls around the floor even more than Addison. He's starting to push himself up more and more and I can tell he just wants to go. He loves his food! He eats lots of baby food (anything except peas) and we've started again with infant cereal because we have so much of it. About a week after Riley got his bottom two teeth, I noticed a big white bump on his upper gum where the tooth in between his front tooth and canine tooth would be. I started to get worried and then the next day, a tooth popped through. He hasn't got his front top teeth yet but he has his one little top tooth now.

You can't see his teeth in this picture because they were still barely through but I love this picture of him. He smiles and laughs all of the time.

Rollin Riley and other updates

Riley rolled from back to belly today! He did it a few times when he was a lot smaller but those were all accidental. This time he rolled while trying to reach a toy. And he hasn't stopped since! He's rolled about 5 times already today.

Back on July 28th, Riley got his first tooth. Addison got his bottom right 5 days earlier, Riley got his bottom left on the 28th, then on the 29th, Addison's bottom left broke through, and a few days later, Riley's bottom right came in. In a few short days, we went from no teeth to four teeth!

I've been trying to work with Addison on eating baby food. He opens his mouth and tried to eat but he sticks out his tongue. Saturday, I gave Riley a whole 2.5oz. jar of pears (his favorite!), and then I sat Addison in the chair and tried to feed him apples. He opened his mouth, kept in his tongue, and ATE THE WHOLE JAR! He was happy and he knew I was proud of him.

Addison has been babbling a lot. He says things like, ga ga, ba ba, and he'll even say ma ma. As much as I would like to think he's calling me mama, I know it's just babbling right now. Even though I know he's not saying "mama", when he starts to fuss and says "ma ma ma ma ma" I drop what I'm doing and come right over to him. I like to think he's talking to me :)

Addison has a tooth!!!

After 13.5 long months, Addison has finally had his first tooth pop through his gums!!!!!!! I thought for sure that Riley would get teeth first, but in true Addison style, he had to be first :) This morning he didn't have a tooth. Tonight at dinner, it was there. It's just above the surface of the gum so it might be a few days before it's all the way in but I will be sure to photograph and share as soon as I can.
Another exciting thing Addison did was eat from a spoon! He finally started to open his mouth for baby food. He got a few good spoonfuls of squash and then went back to blowing raspberries at me. It's a good step in the right direction!

Eating food and a rave for Kolcraft

The boys had been eating a few baby foods and rice cereal back in March, before they got sick. When they got sick, I stopped giving them food because they were coughing so much and I didn't want them to choke. I'll admit, I've slacked about introducing more foods until recently. I sat Riley in our new high chair and he chowed down on a half jar of baby food. He loves food. He is now eating a small jar of baby food at a time! He opens his mouth and has no problem swallowing (he used to shudder when he swallowed food). Addison still isn't too into food. He's much happier to have his bottle but we're working on it.
I also have to give a huge rave for Kolcraft company. As many of you remember, I searched forever to find a stroller that was compatible with two Chicco Keyfit 30 infant seats. The Kolcraft Contours Tandem fit perfectly so back in October, I purchased one. Within a month, it started to not latch all of the way on one side. It was still totally usable so I just kept using it and a few months ago, it got to the point where the left side didn't even latch and the handle bar was wobbly. I contacted Kolcraft and explained my problem and they offered to replace the stroller, free of charge! I shipped the seats back to the company (since the stroller part is now useless) and last night a new stroller arrived at my house. I'm so impressed with Kolcraft and I thought I'd let everyone know how awesome they are!

First NICU follow-up appointment

We were supposed to go for a follow up visit with Dr. Brown from the NICU back in April. Somehow, our card to set up a time got lost in the mail when we moved and we were finally able to set up a visit.
Dr. Brown was really nice and after the babies got used to their new surroundings, they were happy as can be. They're making good progress according to him. He thinks their fine motor skills are advanced and they respond well to people. They are behind on their gross motor skills but both of their heads measured 44cm (great size for their age and size) which indicates lots of brain growth. I pointed out the veins that run along the suture lines and he said it was completely normal and that I shouldn't worry unless their soft spot closes and I can still feel open suture lines. Neurologically, there doesn't seem to be anything wrong. He, like their pediatrician and physical therapist, said that one day, they'll just start sitting and crawling but that slow and steady seems to be their style.

He wants me to try to get them to eat more calories but he said they're not malnourished by any stretch of the imagination. We've started to add in more baby foods and some days they're into it, some days, they want nothing to do with food. Today, Riley ate almost a whole jar of apples! Dr. Brown was amazed that they nursed exclusively for 11 months and he said that is probably the reason that they have such nice skin.

When we first got there, they weighed and measured them. Wait till you hear this.....Addison was 13 pounds!!! THIRTEEN! Just a few weeks ago, on June 19th, he was 11lbs. 6oz. Riley has gained a good amount also. He's now 12lbs. 10oz. He weighed 11lbs. 8oz. back on June 19th. I just couldn't believe how much they've gained. It shows though. Addison is noticeably bigger than Riley again. I guess he didn't like being smaller than his brother.

Here's Addison on 7-7-09

I have to brag for a moment. The boys finally made it onto a growth chart. I know this doesn't seem like a big deal to most people but I've been waiting for it to happen. Dr. Brown had a specialized preemie growth chart. Addison hit the 5th percentile for weight, based on adjusted age. They were both right around 40th percentile for head circumference. Riley was almost on the charts for weight but fell just short of the lowest percentile.

So, we go back in 6 months for another follow-up and Dr. Brown said they'll be crawling into his office by then :)

After our appointment, we got to head over to the NICU and visit the nurses. Some of my favorite nurses were working today and two nurses hadn't seen them since just after they came home. They all loved seeing the boys and I'm sure the boys were happy to see them...and then leave.

We've had a busy week and this was a good way to end it. Ian has been on vacation all week and we spent the first few days visiting the Philly Zoo, Crystal Cave, and the Herr's chip factory. Ian celebrated his birthday yesterday and this Sunday, Skylar will turn 8. We recently invested in 2 Snugli type carriers and we've been able to do more things as a family. We've been enjoying Reading Phillies games and Crystal Cave wouldn't have been possible with the stroller.

Here's a pic of all of us after our tour on Monday. I have Addison and Ian has Riley.

And here's a cute pic of all of the kids outside of the Herr's factory.

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.