New year, new adventure

Just when you think you're at a nice steady pace, the troubles of micro preemies become loud and clear.

Yesterday was the boys 18 month well visit. We've had a rough couple of months with physical therapy. We've had 4 different therapists since October. Some better than others. We're finally happy with who we were matched with and I've seen lots of changes in the boys. Addison crawls. He's almost crawling on his hands and knees. He pulls to standing, climbs over things, and is sitting unassisted (as long as you prop him into the sitting position first). He eats table food but prefers to dissolve the food in his mouth instead of chewing it. He has started to clap and does "so big" (puts his hands up in the air when someone says so big).

Riley, on the other hand, does not sit unassisted. Just this week he's regularly able to sit with his hands propping him. He almost never puts weight on his legs/feet. He'll push up and down on my lap as a game but will not pull himself up or put his legs down while in the exersaucer. He's still army crawling but does get up on his hands and knees and rock.

So, I brought it up to the pediatrician and I asked when it switches from "there's nothing wrong and they'll "catch up" to is there something wrong and that's why they're so delayed?" He said there's always been something "wrong" and now it's just a question if it's something neurologically or just a side effect of being born so small. He's referring us to a developmental pediatrician at the Hershey Medical Center. Apparently it could be some time before we're able to get in because there's not many developmental peds. around. I guess once we're seen there we'll get more information towards a diagnosis or cause for their developmental delays. It will allow us to have more targeted therapies and possibly more therapy. We've also been referred for a cranial ultrasound to be sure there's no extra fluid or swelling in the brain. He doesn't think that's likely but since their soft spots are still open, he wants to be sure everything is ok.

Enough about all of that. Christmas was a lot of fun. The boys got very spoiled but didn't have any interest in tearing off wrapping paper. They got lots of toys (almost all with a therapy purpose in mind) and they're enjoying them every day. We only had one sick visit in December and it was just for wheezing and chest congestion. They were both healthy for Christmas and we enjoyed a weekend of friends and family.

Addison now weighs 18 pounds even and Riley weighs 16lb. 10oz. At our doctors visit just 2 weeks before the well visit, they were 17lb. 8oz. and 15lb. 12oz. with their clothes on. They've had a pretty big growth spurt over the past month or so. Part of the reason for the weight gain is because of our awesome speech therapist. She has them eating almost all table foods. I only use their baby food to mix with regular foods. We're going to now start weaning down their formula and switching to part milk/part formula and we're going to try to decrease the number of bottles they're taking in hopes of increasing the amount of meals and snacks. Riley is my big eater. He loves to eat all types of food and he chews everything with no issues. He's also the first one to have a molar come in. He drinks perfectly from a sippy cup too! Addison needs some work. He loves food and will shovel handfuls of food into his mouth but then he lets it dissolve before he starts to chew. He'll eat any and all table foods and so far but doesn't really do well with the sippy cup. He knows what to do but he prefers to dump it on the tray and then play with it.

All of the kids loved their Christmas Eve pajamas!

Addison plays so much in the exersaucer

And Addison has discovered how much fun it is to splash in the dogs water dish

This is about as involved they got in opening presents

Riley didn't want anything to do with wrapping paper

But he sure liked playing in the new ball pit!

Addison liked it too! He sat like this for about a half hour.

I have lots of stuff to share

The holidays have kind of taken all of our free time and I've got so much to share, hopefully I remember all of it!
We're still fighting with germs. I had the boys back to the pediatrician 2 days ago. They've been coughing and wheezing for more than a week and although their runny noses went away, the wheezing is hanging around despite regular breathing treatments. The doctor took a nasal swab and sent it to the lab to be cultured but we haven't heard back yet. In the meantime, we're just sticking with the breathing treatments.
The therapies are going so well! Their speech therapist has them eating so many new foods. Addison can't get enough. He will grab anything and everything out of your hand and eat it. Riley will eat all types of different foods but prefers to be fed. Riley is drinking from a sippy cup though. He drinks so nice and neat while Addison prefers to bang the cup on the high chair tray and dump the juice on his head. Lately, the boys have been enjoying bananas, banana bread, cheese curls, and chocolate chip cookies. While that may not sound like the healthiest diet, they're eating a variety of textures and flavors and not having any trouble changing between the different foods. That's a huge plus! Since the boys have been sick, we haven't been pushing them too hard. After the holidays, they're due for their quarterly review and we're going to re-evaluate their goals. As of now, our plans are to start adding in actual meals (and reducing the amount of bottles) and to start adding language into their sessions.
Physical therapy is wonderful. She comes Saturday mornings and this past weekend, Addison was standing with just his hands on the exercise ball. They're both up on their hands and knees and rocking back and forth. Addison is almost always found pulling up on something. He easily pulls up on his knees and occasionally will get his feet under him. Riley is really getting around now. He's no longer getting his arm stuck under his body and he crawls all over the place.
Occupational therapy is also going well. Addison plays give and take. They're both holding their bottles and banging 2 toys together. Addison will put things into a container and then take them out. Riley takes things out of a container but hasn't started to put them back in.
They've both had a growth spurt over the past 2 weeks. There were a few night where they were drinking bottles non-stop. They went through a container of formula that normally lasts us about 3 days, in just over 24 hours...twice! We spent a small fortune on formula last week. When we were at the doctor on Monday, Addison weighed 17lbs. 12oz. and Riley was 15lb. 12oz. When we were at the doctor last month, Riley was only 14lbs. 10oz. (which was not much more than what he weighed at his 15 month check-up). They're both getting lots of teeth. Today, Riley got his first molar on the bottom left side. These poor boys have had their gums swollen for days now. They both have all 4 front top teeth. Riley just had his last of the bottom 4 pop through last week. Addison has 3 of his bottom front and no molars yet. They'll be in soon enough.
I'll write more about this when I have time but if you look over on the right side of the blog, you'll see a purple box for the 2010 March for Babies. Last year, Ian and I raised just shy of $600 in about a month. The fundraiser officially kicks off in January but we're able to start raising money now. The walk is April 25th, 2010 and I set a goal of $1,000 in donations for team Macomber Miracles. If you're local, consider joining my team and helping to raise money. If you're not local, or able to join the team, please consider making a donation to my team. No amount is too small and any amount is very much appreciated. The March of Dimes has done so much to benefit premature and sick infants and I'm excited to be able to participate again this year.

This is our 2009 family Christmas picture. Ian is holding Riley.

Addison enjoys some puff snacks.

Riley being a ham :)

What a fun couple of weeks

We got hit with a few different colds and viruses. Addison and Riley had fevers for 5 days, and were getting multiple breathing treatments per day. We're finally just dealing with a nagging cough and some gunk in their lungs that gets coughed up every so often. We felt lucky that it was here and gone in only a few weeks, and 2 doctors appointments. For a few days, we thought we were going to have a repeat of the 2 month long RSV stuff that we dealt with in the spring. The boys didn't qualify for Synagis shots this year so we're being extra cautious for the next few months.

The boys are all over the place. Addison crawls so fast now. He chases Skylar and Leah over the room, crawls into the kitchen to play with magnets on the fridge, and will crawl down the hallway to find his brother and sister. He'll even crawl over things to get to what he wants. Riley is still getting around but he keeps getting his elbow stuck under his body and will topple over his arm.

Addison has started using his legs to push. If he's on my lap and I put the remote or my phone behind me, on the back of the couch, he'll use his legs to push up to standing and get them off the couch. He's nowhere near being stable enough to stand but he's finally starting to use his legs.

Speech therapy is going well. She has the boys eating lots of new foods. Addison will eat french toast sticks (torn into bite size pieces) and they both had noodles, chicken, and carrots when Ian made homemade chicken noodle soup. We're hoping to start with some simple signs so that the boys will have a basic way of communicating.

Occupational therapy is also going really well. They are both clapping and will bang 2 toys together. They've both developed the pincer grasp and can pick up small things with minimal difficulty. Riley will now hold his own bottle. That's a huge help. She also has them starting to put things in and take things out of a jar with hopes to transition to handing a toy back and forth with us.

Probably the best therapy news is that we've FINALLY found a physical therapist that we love! She's an awesome therapist who works for Easter Seals. She has worked with a friends twins and she was highly recommended. She is friends with the boys speech therapist and is just totally awesome. She was out here at the beginning of last week just to meet the boys and see what they're able to do and even though the boys weren't feeling well, she had them giggling and smiling even though they were doing hard work. We finally feel like we have the perfect team and I'm excited to see what will happen. The replacement physical therapist was horrible for the boys. Ian was working from home for her second week and the minute she walked out of the house, he said "no way". she had a much more laid back approach and we really needed someone who would be hands on and more aggressive.

We finally got a second high chair so now I will be able to feed the boys at the same time and have them face each other to hopefully encourage each other to eat more food.

Lately, the boys have been interacting with each other so much. They both break out into laughter and make each other laugh. They play with toys together, chase the dog and cats tails together, and are just plain cute together. Today they were cracking me up so I had to break out the camera and video tape their silliness. I uploaded 2 of the videos onto youtube so that we could send it to family and friends so I will share it with all of you too.

http://www.youtube.com/watch?v=_qeoWbmTtJM

http://www.youtube.com/watch?v=Eknzjvw89vs&feature=channel

Also, here's some cute pictures :)

Ian with Addison (and Pixie)

Riley

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.

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.