Are you (micro) preemie Mom enough?

The internet has allowed us a huge opportunity to find support and network with other people who have had similar journeys. When my oldest son was born in July 2001, this was not the case. I didn't know anyone who had a premature baby. I was alone, with my new baby in the hospital and I was scared. I walked into the NICU every day, not knowing what was happening or how to cope with things like...seeing an IV in my sons forehead or hearing alarms and bells dinging when he stopped breathing. I didn't have support or resources and it was a truly terrifying 21 days of not knowing. Please, 21 days you say? That's nothing right? Not a "real" preemie. But in real life, it is. 21 days is a long time to go home without your baby. 21 days of doctor and nurse lingo and terms I didn't quite understand. When I got pregnant again...I said, never again. I can't ever do that again. And fortunately, my daughter was born 2 days before her due date, in a dramatic emergency C-section, but healthy, screaming, and left in my arms 2 days later.
Then I had a miscarriage at 13 weeks. It was devastating. And close to my due date, I got a positive pregnancy test. The next 3 months I constantly lived with the worry of another miscarriage. Every little cramp put me into a panic. And at 15 weeks, I started bleeding, just as I had with my last pregnancy. The midwife couldn't find a heartbeat and sent us for an ultrasound to confirm a terminated pregnancy. It was then that my life was thrown upside down when they not only found one heartbeat, but they then labeled "Baby B", assuming I had already known I was having twins. I remember crying because I was happy but also because I had to trade in my brand new Honda for a minivan. haha. 10 weeks later, my twins were born...just shy of 16 weeks early, on the verge of viability. We were given a 25% chance that they would both come home.
This is where the internet really became my friend (and most hated enemy. Don't EVER google "25 week twins" while lying in the hospital, just having delivered 25 week twins). There was a plethora of information, other parents who have gone through similar experiences, even charities that help and support sick children. I was able to blog my daily updates so I could defer the 4,000 people a day asking "how are they?" and now I'm able to look back and remember info.
But, the internet has also become a virtual pissing contest for who had it worse. What makes my 25 weekers experience any more important than my 32 weekers? Oh, right...nothing. If you have had a baby and had to leave the hospital with your child still in the NICU, you, by default, are part of a club that no parent wants to be a part of. Congratulations and I'm sorry. My twins only spent 81 and 87 days in the NICU while other babies born at a similar gestation have spent well into triple digits. Does it make me less of a preemie mom because none of my preemies needed surgery while in the NICU? Nope, and it doesn't make you more of a preemie mom if your child did.
There is no winner in the NICU parents club. Nobody gets an award for having the longest stay, sickest baby, etc. What we as parents need to remember is this...any parent who has had to leave their child behind has felt the same as I did. Fear of the unknown, loneliness, guilt, anger...you name it, I've felt it and I can almost guarantee that every other parent of a preemie has felt those and more. What we need to do is remember that next time someone says "I know how you feel, I had a preemie in the nicu for 2 weeks". Instead of rolling your eyes and thinking, lady, you don't even know how I felt, remember that traumatic first night without your child and know that they have felt the same way. Every path through the NICU is different and there is no right or wrong way to grieve or sort through emotions. But what we can do is step back, have some empathy, and remember that each path is different. Some of us got to roll down a flat paved road, others went off roading through the mountains. And some, have had all sorts of paths travelled and can see it from all perspectives.
We as preemie (and micro preemie) parents needs each others support, not judgement.

First Day of Preschool photos

Yesterday the boys started their last year of preschool. They were apprehensive but excited and I had a tough time trying to get them to take a "nice" picture. These pictures show so much of their true personalities...they're just so 'them'.

We wish you a Merry Christmas.... (ok, a little late)

What a great end to our year! We had a wonderful Christmas and are looking forward to another upcoming year of great things for our family.
Addison and Riley are loving school and their class did a Christmas concert for all of the other classes and parents. The twins didn't sing but they stood up there, did the motions to some of the songs, and we were very proud of them.
The twins really "got" Christmas this year. They were excited to see Santa on the firetruck (who, at the new house, comes on the firetruck along with the Grinch, frosty, Mrs. Claus, and elves and they give out apples and Hershey's chocolate bars). We went to Christmas Village and Addison jumped right up on Santa's lap and asked for....a cow. That was all he really wanted. Santa thought that maybe 2.5 acres wasn't enough room for a real cow so he brought Addison some cows figures that he has been carting around with him ever since Christmas.
We just got over our month long germ sharing event which resulted in missing all but 2 days of preschool in January but everyone seems to be healthy now.
The twins are officially registered for preschool next year, but...they'll also be old enough to start kindergarten. I really don't think they'll be ready for kindergarten in the fall but I'm not totally ruling  it out yet. I called BCIU to have them evaluated again to see if they can get a new IEP and maybe placement into a classroom. I'm waiting on paperwork to get mailed here and once they have that back, we'll be able to schedule a full evaluation. I made sure that we wouldn't be stuck with the the same coordinator as before and fortunately, she doesn't handle our new school district.
In an attempt to make the twins some local friends, I'm checking out the local MOMS club next Friday. I've got my fingers crossed that it works out.

Visiting Santa at Christmas Village





 



Christmas morning

 

Riley loves sledding!

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All moved in

The last 2 months have been a whirlwind of activity for us. We're all moved in and anxiously getting ready for Christmas in our new home. There was a bit of drama during the week before closing but everything worked out and we are very proud (and broke) new homeowners!!! The kids are adjusting as well as possible. The older 2 started back in public school. We were fortunate enough to move to a wonderful school district and everyone at the school has gone above and beyond to make their transition as easy as possible. Leah misses her friends at the old place but there's actually a good amount of kids in our area and a little girl just down the road who is the same age as her. Skylar is now in a real middle school where he has a locker, gym uniform, changes classes each period, etc. It was so different than the way our old school district operated but he is constantly saying how much he likes the new school (the lunches are even better here apparently).
We've still got boxes to unpack, quirks to figure out, and repairs to be made, but we're all very happy here. We really lucked out on not only the house and acreage, but the little neighborhood that our home is in. The neighbors are all very nice and it really is a small town, everyone helps each other type place. A lady down the street even baked us cookies. In our old development, not only did my mom live there for the first 10 years but then I was there for 3.5 years and I didn't know the names of the people who lived across the street. Everyone was very...I don't know the word...they all kept to themselves. I did know some of the neighbors and my kids played with other kids but  I never felt at home there. Here, we're close to the top of a mountain and the sun rises in back of the house and sets in front and the deer come right to the corner of the deck to eat the fruit. I hear cows mooing and chickens crowing and everything is just peaceful. We've got 2.5 acres to play on and a dairy farm behind us and I couldn't have asked for a better place to raise my family.
So, enough of me gushing about the house. The twins are doing great. They're very excited about Christmas this year and are excited to see Santa. Addison really, really wants Santa to bring him a cow...a real one. Riley wants a basketball and football, despite the fact that we have a full bin of sports balls.
They're making huge strides in preschool. Addison doesn't do well with strangers and was really reserved in school. A few weeks ago he came running out and said "I said good morning!" Yes, he finally talked to the teacher and now has no problem in class except they won't sing.
It's hard to believe that they'll be old enough to start kindergarten in the fall. I'm still trying to decide if I should send them this year or wait one more year.
Terran is also progressing nicely. He just had his quarterly review for both of his therapists and we almost struggled to come up with new goals. His gross motor skills are great and his fine motor skills have really improved. Still not talking though. He's 18 months actual, 15 adjusted and only says mama, dada, and baba. He's eating like a champ. He loves food. Doesn't matter what it is, he loves it. He's got 4 molars that just broke through his gums and 4 in the front top and 3 (working on the 4th) front bottom.
Terran loves music of any kind. He will dance to anything and loves playing the drums, keyboard, and plucking guitar strings. He's adorable and comical and pretty much always happy. He really is the ideal last child. I'm ending my baby years on a very positive note and while I love watching him grow and learn, I'm sad that this will be the last time I get to experience all of the joys that come with watching a baby grow.

Halloween 2012

 

First time playing out in the snow

 

 

 Me and the 4 older kids at the Christmas Tree farm

We have had quite the summer and I'm about to overload you with pictures. I made the most of the summer. The twins turned 4. We didn't have a party for them but we took them to the zoo for the day. They had a lot of fun and loved seeing the different animals.

They really have come a long way over the summer. Addison can have full conversations with adults (although he won't really talk to anyone he doesn't know). They sing songs, play games, and act like 4 year olds.

I'll jump through the rest of the summer so I can add this picture.

 

 

They started their second year of preschool in September. They're in a class with 9 other kids and unlike last year, I don't stay with them. They were pretty apprehensive the first few days but the teacher tells me that they're coming out of their shells and, especially Riley, is interacting with the teachers and the other kids.

They love to come home and show me what they made and tell me what they did. It's certainly not cheap but I already see positive changes so it's worth the extra money to me.

 

We went back to Dewey Beach this summer. I took the 4 kids (alone, I might add) 2 years ago and ever since, Leah had been talking about going back to Dewey Beach. Being the frugal mom that I am, I found a campground in Rehoboth, just 2 miles from the beach. We stayed in this tiny cabin at Big Oaks Family Campground. It was a perfect weekend. The campground had a pool, playground, and arcade (for the bigger kids). We only spent one day at the beach though. The twins were so excited about the ocean and the minute we walked onto the beach, they were terrified of the big water. I tried to dip their feet in and they weren't having it at all. So, I spent the day sitting with them on the sand while they happily dug, buried, and played in the sand. They loved seeing the boats and airplanes from the shore and we went early in the morning so they could see all of the dogs on the beach.

Leah, Skylar, and Terran all loved the water. Terran could have spent the whole day playing in the ocean.

 

We spent Labor Day at the Pennsylvania Renaissance Faire. It poured. All day long. The kids had a lot of fun though. Adult tickets were buy one get one free so we were able to all go for a reasonable price. The money I saved on the second ticket was enough for us to have spending money while there. I love taking a step back into simpler times. The rides are all non electronic. The games are things like ax throwing, skeeball on a wooden board...all basic. And, even though it poured and we had to spend a few minutes in a shop while a thunderstorm rolled through, not one of the kids complained.

 

 

Finally, we spent a few hours at the Oley Fair. It's a local farm fair in the town next to ours. They have cows, pigs, sheep, etc., tractor pulling, little basic carnival rides. It's your basic country town fair. We took the kids last year and they had fun but we mostly just went so they could ride the rides. This year, it was a bit more exciting. See.....we're moving! Moving to Oley specifically. So, we were (ok, maybe just me..the kids didn't like me talking to the vendors too much) also there to get info on local businesses and places. We found out info about youth sports, the school, and even learned that there's a library!

 

Our lives have been crazy. We had a full summer and then we stumbled upon a house we couldn't refuse. Yes, we'll be homeowners!! And, we won't just own a home, we'll own 2.4 acres!!!! And, we'll have chickens. Yes, it's this former farm kids dream place. It's much smaller than where we live now but I've always felt like I was drowning in this house. It's too much...even for a family of 7. We'll still have 4 bedrooms and 2 bathrooms, a full, walk-out basement (that we plan to eventually finish), and plenty of room for everyone, but we'll be more cozy.

We have settlement in less than 2 weeks and we'll be officially moving in on the 21st. There's some cosmetic work to be done but overall, the house is solid and perfect for us.

 

This is a bad picture taken with my outdated cell phone. There is a second floor and it's much bigger than it looks from the outside. There's also a nice deck on the back and there's apple and pear trees on the property. I'm looking forward to lots of baking and canning in the future. We've got plans for lots of fruit and veggies in the spring and I'm so excited to have more than a dinky 10x10 garden plot.

Terran turns 1!

I realized this morning that, as I approach the twins 4th birthday (yes, FOUR, hard to believe, huh?), I never even wrote about Terran turning 1.
We celebrated my last first birthday on May 29th. I have officially moved on from baby-hood. We had a wonderful party for Terran and lots of friends and family came out to celebrate.

Terran seems to forget that he was a mere 2 pounds when he was born. He has no limits and he amazes us every day. He's walking along furniture and just recently, his physical therapist was able to get him to stand unassisted for 5-10 seconds. He loves food. No problems eating at all. And, he's just shy of 17 pounds. I'm so incredibly proud of him!

Another March for Babies has come and gone!

We did well this year, a total of $801 was raised by Team Shining Star. Thank you to everyone who was able to make a donation!
Our walk was at a new location this year. We took a nice, scenic walk around Penn State Berks campus. Last year, the twins only walked the length of a bridge and back but they rocked it this year! They walked more than a mile on their own. They cut out of the walk early and took a short cut to the finish line with their Nana, but I was so proud of them. It was a great day of seeing old NICU friends and doing something helpful as a family.
I was late to the game this year and was feeling so overwhelmed with life that I almost didn't walk this year but I'm so glad I did. The walk is always such a healing process for me. It brings me back to those first few days when I wasn't sure if my twins would come home from the hospital. And, I'm reminded why I raise money every year. If there's a chance that even one dollar that I raise helps another parent not have to wonder if their baby will come home or not, all of my efforts were worth it.

All of us after the walk. Notice Terran passed out in the carrier.

We had a great lunch provided by Sheetz and Clover Farms that the kids devoured.

So, thank you again to everyone that donated, supported, and thought of us. You all helped make this years walk a success!

Now....onto birthday party planning!!! Hard to believe that I'm a few short weeks away from my last first birthday. It's awfully bittersweet. And, before I have time to recover from Terran's party, I'll be throwing a double birthday party for FOUR year olds! As much as I loved having the extra baby time with the twins, I was thrilled when they started the develop into toddlers. Now, they're soon turning four. They grow up way too fast.

5 days until March for Babies

Team Shining Stars will be walking again in the March for Babies on May 6th. This is my 4th year walking and this year, I have one more preemie to walk for. I have had the full range of preemie babies and no matter how long or short their stay in the NICU, they all had their unique medical issues. The March of Dimes has done so much to benefit babies that are born early. Walking in the March for Babies is one of the few things I can do to give back and say thank you for giving my boys the best possible start to their lives. I'm still more than $150 from reaching my personal goal and My team is over $500 short of reaching the total goal. There's just a week left so I'm asking you to please consider making a donation. No donation is too small. If you're not able to donate, please consider joining my team and raising some money.
Here are pictures of all 4 of my preemies on the day they were born. This is Team Shining Stars:




Skylar, born at 32w3d in 2001



Addison and Riley, born at 25w4d, in 2008

Terran, born at 28w in 2011

If you're able to donate, you can click the purple March for Babies box in the upper right side of the blog or you can click on this direct link.

http://www.marchforbabies.org/macomberfamily

Thank you for helping us help babies!

Better late than never

For the 4th year in a row, my family formed a team for the March of Dimes March for Babies. We're back with a new team name. We're now Team Shining Stars. Having 4 preemies, it only seemed fitting to incorporate all of them into the team name. Skylar, Terran, Addison, and Riley were all born between 25 and 32 weeks gestation. Terran was often referred to as a Shining Star in the NICU.
So, while we're late to the game this year, I'm confident that with the help of my wonderful friends and family, that I'll be able to reach my goal of $1,000 for our team. If you're local and would like to walk with us, we'd love to have your support. If you're unable to join our team, I ask that you please consider making a donation to support Team Shining Stars. You can click on the banner to the right and find out more information on walking with or sponsoring our team. No donation is too small and every dollar is appreciated. The March of Dimes funded research that saved my boys lives and I will be forever grateful for their commitment to helping babies that are born too soon.

Parents of Preemies Day

So, I guess Pampers diapers has come up with the idea of having a nationally recognized Parents of Preemies Day. I'll happily celebrate the first one with them. Anything that helps brings awareness to preemies and what kind of impact they have on your life as a parent is ok in my book.

With that in mind, I'm excited to say that this morning I received a call from the head NICU doctor at the hospital where all 4 of my boys spent the beginning of their lives. He asked me if I would be interested in joining the parents advisory council for the NICU. I'll be helping to coordinate support groups for parents with babies in the NICU and also helping to write family friendly policies for the NICU. That's really as much as I know right now. I'm supposed to hear from another lady in the next few days who will give me more information. But, I'm so excited! Ever since the twins came home, I wondered how I could help and have it directly benefit the NICU at the Reading Hospital. March of Dimes is great and all, but having experienced so much of NICU life, I thought it would be great to give back to the people who are in there every day, navigating their path through the ups and downs of a baby in the NICU, and adjusting their lives to prepare themselves for what the future will bring. I can't think of anyone better to give support than people who have sat in those same exact rocking chairs, scrubbed their hands in the same sinks, and sat for endless amounts of time in their breastfeeding room both pumping and trying to teach their tiny baby how to breastfeed. I've been there and I've come through it a stronger person (not without scars though. I truly believe I have some leftover PTSD from the twins birth and first year of life) and so have many other parents. I truly feel honored that I was asked to do this and I can't wait to join the other parents!

First dentist visits

I finally found a wonderful dentist who is great with the kids. The twins finally had their first dentist visits yesterday. They did go well! They went back, to separate rooms, and me and Skylar switched back and forth so that someone was with them the whole time. They counted teeth (both have 20!), and gave them a quick cleaning. No cavities! And, the best part (at least for the boys) was getting cool Lightning McQueen toothbrushes when they were finished. They proudly carried them out of the rooms, and were eager to show them off to everyone when we got home. They couldn't wait to open them and brush their teeth. And first thing this morning I heard..."you brush mine teeth wif mine yeitning queen toofbrush"
Tomorrow Addison goes for his pediatric psychologist visit for an IQ test to see if he qualifies for SSI. Wish us luck. I'm curious how well an hour long appointment with this psychologist is going to go considering Addison rarely talks to strangers. I'm sure it will be interesting.

Diagnosis day

Yesterday was our long awaited appointment with the pediatric neurologist. Riley got the referral back in August or September of last year because our pediatrician was concerned that Riley wasn't talking and that his gait was so off. He suspected that there would be a Cerebral Palsy diagnosis given.
And there was.
The doctor was wonderful. He seemed very knowledgeable and he was great with the kids.
The good news is that Riley doesn't have muscle tone problems and hopefully, with therapy, he'll improve. He diagnosed him with mild CP, likely due to PVL. He wrote a prescription for ST, OT, and PT and I have to speak with the social worker at St. Christopher's Hospital later today and try to get some services lined up. We decided to not do the MRI now because, at least right now, it wouldn't change his diagnosis. He wants to see Riley back in 6 months and if therapy hasn't helped, we'll proceed with the MRI. I want Riley to get the help he needs, while causing the least amount of trauma. The MRI would be done at St. Christopher's in Philly, while under sedation. That's something I'm more than willing to put off for 6 months if it means we might not have to do it.
So, this now opens a new world of medical stuff for us. And it's kind of overwhelming. I think I just kind of pushed all of this to the side and didn't do much research, which is so unlike me. I knew, deep down, that he probably had CP but I think a big part of me was hoping he'd just catch up. I think actually having it be official is just sinking in. Riley has Cerebral Palsy.