Riley is crawling!! and a summary of Blue Jeans for Babies bash

So, he's on the move!!! Riley has started crawling! I had to take Skylar to basketball sign-ups and on the way home, Ian called me to say Riley had just crawled! While I was disappointed that I wasn't there to see him, I'm thrilled that Ian got to see one of them crawl for the first time :) He's not moving as well as Addison but he is on the move! Never, ever did I picture them crawling. It's just so amazing. I'm actually excited that I have to buy a baby gate for in between the kitchen and living room.

Therapy is going well. Our awesome new physical therapist has to have back surgery so she'll be out until April. Until then, she's got someone to take her caseload but I'm not too thrilled with this new lady. She was out yesterday for the first time and I may give her one more week before I make any final decisions. I would really like to wait for their therapist to come back but I just don't know if I'm willing to wait that long with someone I'm not happy with.

So, Ian and I had the babies out Monday night so that we could speak at the March of Dimes Blue Jeans for Babies bash. We got to meet the couple who started the fundraiser, 19 years ago. They were such a wonderful couple. We also met the local ambassador family for the 2010 March for Babies. I did my small speech about my pregnancy, delivery, and 87 day NICU stay. We had a wonderful dinner donated by Subway, Berks Foods, Mission Foods, and Sweet Street Desserts (YUM!) They had a raffle for some really neat baskets and we ended up winning a basket full of useful stuff from Berks Foods and tickets to a local indoor football game. Overall, it was a really fun night for a really great cause and I felt honored to have been asked to participate. I'm now looking forward to the March for Babies kickoff party in January. I've got MUCH bigger goals this year.

Sadly, I don't have any pictures to share from the Blue Jeans bash but I do have some cute pictures that I've taken over the days. Enjoy!

Lately, they've been doing a lot of this. Especially when one of them has a toy that the other one wants. Riley is in the blue and Addison is in the navy and yellow outfit.

They freak out for a minute and then they look so innocent and cute :)
Oh, and Halloween, how could I forget to tell you about Halloween? The kids were all so darned cute! It rained a lot and was cold so Ian brought the boys back to the house while the big kids braved the rain and went house to house. Riley was the lion and Addison was the scarecrow.

Great news article featuring our family

We're speaking for the March of Dimes Blue Jeans for Babies fundraiser this coming Monday and I was interviewed by my local paper about my boys.
Blue Jean for Babies was started in my hometown 19 years ago and has since become a national fundraising drive for March of Dimes.

http://www.readingeagle.com/article.aspx?id=163429

Wear jeans to work in Berks and help a preemie or two
By Dan Kelly
Reading
Eagle
Ian and Lindsey Macomber's first son, Skylar, was born about eight
weeks prematurely.Lindsey said she knew her son would need intensive care in the
hospital.But she never dreamed the health of her children would be aided by
office employees wearing bluejeans to work.William Gage said he didn't know much
about the March of Dimes when he and his wife, Gwen, started the Blue Jeans for
Babies event in Berks County 19 years ago.The concept is simple enough: Buy a
button for $5 for the privilege of wearing jeans to work.The program started off
modestly but began spreading in its second year and now is part of the March of
Dimes national fundraising campaign. It raises about $35,000 to $40,000 each
year in Berks, Gage said."We had a friend who was involved in the March of Dimes
and she wanted to come up with something unique so we all put our heads together
and that's what we came up with," said Gage, owner of Gage Personnel of West
Reading.
The Macombers say Gage may make light of the contributions of Blue
Jeans for Babies and the March of Dimes, but their 1-year-old twin sons are
living proof.Their twins, Addison and Riley, were born 15 weeks prematurely on
June 17, 2008.Addison was 1 pound, 5 ounces, and Riley was 1 pound, 3 ounces.
Normal is about 8 pounds. Each was a little over 12 inches long. Normal is 18 to
21 inches long."Addison and Riley were also treated in Reading Hospital's
neonatal intensive care unit but the difference in their treatment in just the
past eight years since Skylar was born was amazing," Lindsey said. "The March of
Dimes funds research for babies and I credit them with many of the advances that
have been made."Other than being small for their age and a little behind the
curve in their crawling, Addison and Riley are doing well, their mom
said.Lindsey, Ian and the twins will be at the annual Blue Jeans for Babies Bash
at the Crowne Plaza Reading hotel, Wyomissing, on Monday from 5:30 to 8 p.m. in
the Designer Ballroom to share their story and offer their endorsement of the
March of Dimes.The party is open to the public so if you didn't get your button
at work you can get one at the door, Gage said.Contact Dan Kelly: 610-371-5040
or dkelly@readingeagle.com.

If you have a chance, check out http://www.marchofdimes.com/ and look for your local Blue Jeans for Babies event and please consider purchasing a button for $5!

Addison crawled!!!!!!!!

As I was sitting and eating my breakfast, I had the boys on the floor, in just their diapers. Addison was staring down this ball from one of their toys and all of the sudden, I see his arms stretch out and him pull his legs up and then he pushed himself forward!! So, not really crawling like other babies (on hands and knees) but he pushed himself forward a good couple of inches. And, he got the ball he wanted! I sat there for a second wondering if I had just seen what I thought I saw and then I immediately called Ian and told him the good news! He then did it again a few minutes later. I'm so excited and proud and oh my gosh! he's crawling!!!

New crib and food for the boys

For their first 7 months home, the boys slept in their carseats because of reflux. When we moved, back in April, we finally set up the co-sleeper and they were able to sleep in there just fine. They quickly began to outgrow the co-sleeper and before we knew it, they were over the weight limit and rolling onto each other. We've talked about getting them a crib and it's kind of been something on our "to do" list.

I was searching craigslist and I saw that a friend was selling her twins cribs. I went over and Addison and Riley had a little playdate with their old NICU twin buddies and I bought one of their cribs. Ian and I got it all set up, put in their new mattress and sheets, and the boys slept so well in it! I put one baby at each end and they stayed there all night. The next night, Addison discovered how much noise he could make when he bangs on the sides so he kept everyone awake for a little bit but they did end up falling asleep. They both have room to roll around without waking up each other but they're still able to stay in the same bed. They're still sleeping right next to the bed but I plan to slowly move them to the other side of the room (no, I'm not able to just move them away from me. I'm a bit crazy and I still get up in the middle of the night to make sure they're still covered and breathing).

Therapies have been going really well. The boys LOVE the Gerber Puffs! They eat at least a handful every day and they still eating lots of baby food. We also started giving them organic yogurt and cow milk. This morning, Ian and I went out for breakfast with the boys (the big kids spent the night at nanas) and Addison ate pieces of pancake! Riley was so tired and he tried a few pieces but he wasn't too into it. Addison probably would have eaten half of the pancake if I had let him.

Riley

Addison

We've met all of the new therapists

So, last week the boys started with their new physical therapist. She's awesome and I really think we're going to get some results soon. At the end of last week, we met the new occupational therapist. She mostly just did paperwork but she seems to have set some very attainable goals for the boys. She comes back out tomorrow to really start working on their fine motor skills. She has worked with other preemies and is currently working with a 3 year old who was born at 23 weeks.

Today their speech therapist started. She comes highly recommended by a friend of mine and I was very excited to have her work with the babies. She specializes in feeding issues and loves working with babies. Today wasn't too long of a session, she fed them both some stage 2 baby food to get an idea of where they were with their feeding/eating. I have a container of gerber puffs that I bought a few weeks ago and I only tried them once. I broke the tips off of the pieces and Riley gagged on them. I never even tried Addison because he's not as good of an eater. I've tried to give them small pieces of cheerios and they just push the pieces out with their tongues.

So, the therapist asked if she could try some puffs and cheerios. She put a piece of puff in Riley mouth and he CHEWED it!! He ended up eating whole puffs. And, to just make it that much better, he picked up a puff from the therapists hand, and with just a small amount of assistance, he fed himself!

Addison went on to eat puffs also. He was a bit lazier though. The first few, he let dissolve in his mouth and then after 3 or 4, he started to chew them. He did better with the whole puffs, rather than the pieces. He didn't really care for cheerios and they kept making him gag.

The therapist said that she's really happy with what they're doing since they're still considered "early feeders" since they've only been consistently eating for a few months.

She gave me the ok to start trying soft foods. Canned peaches or other soft fruit, small pieces of pancakes, etc. She doesn't want me to try dry foods yet but she's confident that they're able to eat soft foods. Next week we're going to try to start using a sippy cup and within the next few weeks, I think we're going to try scrambled eggs.

For now, we're replacing one evening bottle with a second jar of food. It went well tonight and hopefully it will continue to be easy to take away bottles.

So, we feel like lots of good stuff will come from the aggressive, 3 times per week therapy.

I wanted to share a cute picture. Ian and I took the kids to the Renaissance Faire last weekend. The big kids had a blast and the babies were so intrigued by their surroundings that they didn't sleep the whole time we were there. I took this picture while we were waiting for an archery demo to start. It's really hard to get both babies in a picture when they're in the stroller so you're only able to see Addison.

A big step for me today

I let someone other than Ian watch the babies. I needed to get to the gym and this morning was my only chance today so I walked them into the childcare room and got them situated. I was so nervous to leave them in a strangers care but I knew I would be just outside the room. I only stayed for a little over a half hour and I kept taking out my ear buds to listen for them crying. When I went to get them, they had just started crying. Actually, Riley started crying and when the lady picked up Riley, Addison started crying. But, they did just fine. It was a huge step for me, I haven't even let grandparents babysit (except the one time when Riley was in the hospital but that was out of necessity and there was medical staff all over). A completely child free date night might be able to happen in the near future!

The twins start with their new physical therapist tomorrow morning. I'm excited and nervous but I really believe that this is the best thing for them. Friday their occupational therapist will be here. We're still waiting to hear from the new speech therapist but she does come highly recommended.

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.