Monday, December 31, 2012

Year in Review 2012

(And photo dump)...

2012 was good to us. We celebrate Addi & Blake's 1st birthday, our 5th Wedding Anniversary, Addison's Cleft Repair went well without any complications, Addi & Blake's Homecoming Anniversaries, Blake was discharged from Early Intervention (he's all caught up!), moved (again) into an awesome house in a different state, took a leap of faith and are successfully tube weaning Addison, got to spend lots of time with family and made the most of every moment together... WE SURVIVED AND THRIVED in 2012.

And probably the best part of all is that we will celebrate the new year with TWO healthy, amazing, smart, lovable children who will likely join us for snacks around 8:30 and will be in bed before the ball drops. And my equally awesome Godson who decided to spend NYE with is (I must be pretty cool to have have a 13 y/o who wants to still hang out with me, or maybe he just likes the babies lol). Oh and a visit from my Momma, Stepdad and Mom-mom too. Who knows we might even be passed out before midnight and that will be ok with me.

Here's to hoping that 2013 will hold just as much promise and joy. From our family to yours. :)

























Thursday, December 27, 2012

The truth about healthcare...

My rockstar tubie!

Nope this is not a political debate, this is simply the cold hard truth about "our" (aka this family of four's) healthcare.

When Addison and Blake were born, it did not take long for the healthcare bills to pile up. I am positive that by their 3rd week of life I got a EOB from the insurance company showing me what it cost for their first two weeks of life and what we would owe. I felt sick. For the doctors ALONE it was a few hundred THOUSAND, and then we'd have to pay a HUGE chunk of that. Would it be worth every single red penny they could drain from us... absolutely. But could we afford it? Absolutely not. We did not get pregnant thinking we'd have two preemies and large medical bills. There was no way to prepare for this. In total we spent 105 days in the NICU x 2 ... PLUS another 48 days for Addison (in which she underwent surgery). Can you imagine what that would cost?

I don't know how it came up in conversation with the hospital social worker but she referred me to the billing office who was able to help me with paper work for Medical Assistance. I didn't think we would qualify and I was ashamed. Ashamed that I was taking something from people who really needed it. I was in denial that we were one of those families who DID need it. I was mad that it even came to this. PISSED. And shocked when I got a call that we had been approved and they would be covering EVERYTHING that our primary insurance did not cover from the time they were born forward. Relieved because there was help. We weren't going to drown in medical expenses.

Because Addison and Blake were born below a certain birth weight, they automatically qualified for benefits. It had nothing to do with anything else. Simply a weight. We also later learned that in the State of Maryland, Addison would be qualified automatically until age 21 under "Rare Expensive Medical" because of her Cleft Palate. It would cover every surgery she may need for her Cleft Palate, and all of her feeding tube needs, etc... as long as we lived in Maryland. There are not many ( if any) other states that carry that specific program, so she no longer has that coverage.

Now, keep in mind the hubs works FULL TIME... a lot of time 80+ hours a week. He pays over $500 a month for medical benefits for his family, through his employer. Yes, I am grateful for that we have insurance. BUT... and this is a big one. We found out when we moved that.............HIS POLICY DOES NOT COVER ADDISON'S PEDIASURE, AND THAT THE AMOUNT WE'D PAY OOP after they pay for HER FEEDING TUBE SUPPLIES, is in short astronomical.

The representative at the insurance company informed me that according to his policy guidelines set forth by his employer, they do not deem it medically necessary. So the fact that up until we started tube weaning, her team of doctors deemed it medically necessary and made it very clear that there was only one thing that I could put through her feeding tube that would provide her with LIFE SUSTAINING NUTRITION, a certain formula, did not make a darn bit of difference. And it wasn't a matter of "we don't cover this, but we do cover this" it was plain and simple "WE DO NOT COVER ANY NUTRITIONAL FORMULA WHAT SO EVER, in accordance with the employer's provisions." And when I asked about an appeal, said that it was pretty straight forward and highly unlikely that it would be overturned.

So basically my husband busts his behind for this company day in and day out, pays a high premium for insurance and they won't cover "basic medical needs" for his daughter. But if Addison were back on Medical Assistance it would be covered in full. Something seem wrong with this picture? And let me tell you at $9.00 for a six pack of Pediasure (generic brand) that would only last 2 days... it adds up quickly. THIS IS THE SAME INSURANCE COMPANY THAT WILL NOT COVER BLOOD WORK FOR A RARE GENETIC DISORDER THAT THEY ARE TRYING TO RULE OUT FOR ADDISON BECAUSE THERE IS ONLY ONE LAB THAT CURRENTLY PERFORMS THE TEST.

Did you know that we are not alone? There are hundreds, thousands, of other families out there who are in this same situation. Someone in their family has a feeding tube and their private insurance will not cover the associated expenses. News flash the pump, the bags, syringes, replacement buttons...none of them benefit anyone if there is no "safe food" (aka formula or Pediasure) to put through them. And this isn't just an issue for feeding tube kids either. Kids with medically diagnosed weight gain issues (from prematurity, or other GI issues) need high calorie and pricey meal replacements daily to survive. Private insurance doesn't cover it for them either.

The silver lining in this is that we are moving away from tube feeding, but there are many families who cannot.  We are hopeful that in the coming days/weeks/months we will be transitioning to WCM (whole cows milk) and cutting out Pediasure all together, but reality is that we might have to keep one serving of Pediasure a day on board for awhile. One is better then three, and we'll do what we have to do. But I cannot bear to imagine the financial impact this would have had on our family if Addison were feeding tube dependent for a much longer period of time.

Why am I sharing this?

Because I think it's worth talking about and something that needs to be brought to the for front. It's the dirty little secret so to speak. This isn't the only flaw with our medical system either, but its one that hits home for us. And I am not pointing fingers either. I also do not claim to know the perfect solution. But I wanted my voice...Addison's voice, to be heard.





Wednesday, December 26, 2012

Product Rave & Feeding Update

Disclaimer: I have in no way been paid or compensated by the following companies for my views on their products. This is simply a non-paid review on items I have bought, used and love.

I think everyone has that "one" thing they cannot live without, that serves many purposes and can be used for a long period of time. I am am sure I have several... But tonight as I was feeding Addison her snack, I realized I one that is officially a "must have" for us.

This :


Sassy Crib and Floor Mirror

I got mine at Target when they were less then 6 months old. At the time we used it for tummy time, to give them a visual to distract them. We used it for tracking by moving it from side to side and letting them follow it with there eyes and head movement. Then for reaching and swatting at the lady bug and bee. They enjoyed it for many months as they learned to make facial expressions and entertaining themselves. And the most recent HUGE thing we've used it for... a feeding tool. You read that right. I use it with Addison to help her focus and distract her all at the same time. She is engaged with the baby in the mirror and I can encourage her "Show the Addison how you chew", "Show Addison how you drink". And she is proud to watch herself. If she refuses bites, I use it as a reward. "Tell Addison bye bye", "Take a bite and we'll see Addison".

And now here is your long awaited update. We are almost 2 months into this journey and a month and a week of that is tube feeding free. Knock on wood, for the most part, I have not seen any major regression which can be common. I do notice she has a day here or there were she isn't as interested in eating, but I can usually find a way to encourage her and have still get her to eat. On those days it also seems like she drinks a lot more which is ok, especially because on those days I give her more Pediasure to help compensate for those calories that she isn't eating. Overall her liquid intake is sky rocketing, we celebrated this by buying her big girl cups and firmly committing to straws. She now has cups just like Blake, except in pink and purple and butterflies. Yes I am excited about frilly cups, do not judge me lol, I've waited a long time for a really "sippy" cup for this kid. 

We started with a "Honey Bear" training cup... 

Honey Bear Straw Trainer Cup


(and then tried every other one imaginable), settled on a water bottle (open mouth top) and then I noticed that she was getting good lip closer and making sucking noises so we tried the Playtex Straw Trainer Cup 

Playtex Straw Trainer Cup


which we happened to have left over from Blake (and I may or may not have bought a pink and purple in those too). And are now settled on the Playtex Insulated Straw Cups 

Playtex Insulated Straw Cup




Playtex Straw Cups



These ones I like them for at home and/or on days when I feel like I've got to really watch how much she is taking in. The insulated ones are great for on the go because it keeps things cold longer, which is a must for Addison.

I have also been encouraging both Addison and Blake to fill their cups with water (from the fridge door dispenser), I've found that it makes them feel "grown up" and also makes them want to drink more water because they think they are getting away with something. 

My biggest struggle with Addison right now, is the fact that a lot of her meals are not at the dinning room table. I had set out to be a strict enforcer of all meals at the table, and we did great right up until we started really hardcore weaning her. Then it became a battle. I got better results if she were curled up with me on the couch watching cartoons, or if I was doing some crazy stunt like singing or playing with said mirror, and now even if she is sitting at their new picnic table they got for Christmas. I hadn't given it much thought to "why" this was a problem until I mentioned it to her OT. Then it clicked. She could be associating her high chair with a negative experience (that experience being the grueling feeding sessions that yielded little results while her feeding pump ran, and may have felt like we were trying to force feed or over feed her, or just the fact that that is where ALL her tube feedings happened). For some kids it's no big deal but for a "feeding issue" kid every.little.thing. makes a difference.

When she told me that I admit I felt bad that I hadn't considered it before that, but I vowed that I'd try her booster chair instead and see if that worked and have now made it "our" goal that we will have one meal at the dinning room table every day and the rest I will allow her and Blake to eat at the picnic table. Once we have this eating thing really under control and we aren't so focused on weight, I'll worry about moving them back into the kitchen. I will say that I am very grateful that Blake is so adaptable with this whole thing and doesn't seem phased by relocation of meals, I cannot imagine battling two of them every day (but at this point most days I don't even feel like I am battling one anymore GASP).

So for now our main goals for Addison are: 1.) Gain weight and have G-tube removed. 2.) Eat one meal a day in her big girl booster at the dinning room table. 


Tuesday, December 25, 2012

Happy Birthday Daddy...

To the greatest man I ever knew...
Merry Christmas & Happy Birthday. Only the best of the best can share a birthday with Jesus. I wish you were still here, on Earth, but I know it's best that you are in heaven. Where you know no pain. Where you can watch over us and keep us safe. I feel you around us everyday. I see you in the twinkle in Addison and Blake's eyes.

I love you Daddy.

Monday, December 24, 2012

Holidays Apart

As you gather with your family and friends to celebrate Christmas, remember that their are many who cannot do the same.

Our military stationed miles and oceans apart.

The tiny baby inside an incubator in the NICU. Those celebrating their 1st (for some even their 2nd) and/or their very last Christmas in the hospital.

Those who won't get to celebrate this year because they've gone home to heaven. The moms & dads who's arms and hearts are aching for the loved one they've had to say goodbye to too soon. The children (no matter how old) who's parents have gone before them.


It's the side of the holidays nobody wants to think about. But for everyone of us who complains or dreads their annoying Aunt Sally, who squeezes their cheeks, etc. there is someone out there who wishes they could trade places with you for just a moment. To be caught in the craziness that happens this time of year.

So please dear friends, I ask of you, take one moment of your day to pray for those who need it most. To my own near and dear friends and family, know that my family and I are thinking of you and praying. May you have just a little bit of peace and a glimmer of hope this holiday season.

To our military who have given up their holidays with their family so I can safely have time with mine. To those in other service industries (doctors,nurses,police AND even those providing "luxuries" to those in "need" aka "keeping the world warm") it's a thankless job sometimes but THANK YOU from the very bottom of my heart for doing what you do.

May each and everyone of our followers have a happy, memorable and safe Christmas.

Happy Birthday to Jesus!

Sunday, December 23, 2012

Two years ago...

12/23/2010 I was sitting in the high risk OB office due to some abnormal test results. That morning and the two days before were filled with worry. Our fears were erased that day and we had no idea what would unfold a month later.

That day was one of the happiest days of my life. We found out that day that "Thing 1 & Thing 2" were a GIRL and a BOY. I was overcome with joy and emotions. .

Just look how far we've come...

We spent the day celebrating Merry Christmas with our closest family. And Addison and Blake were once again spoiled. We'll likely be spending the next few days after Christmas and Santa's visit purging toys and saying goodbye to itty bitty "baby" toys, so we have room for all the awesome toddler stuff.

Thank you to all who helped us celebrate. I'd be lying if said my heart wasn't just a little heavy wishing my dad were here, but I am sure he is smiling down. And I am thankful for all the family I got to have near.



















Friday, December 21, 2012

Friday Fun

We had a busy/not so busy day.

First off, every morning we get up and have breakfast and then the fun begins. They are so fascinated by my camera phone, especially the self portrait mode. Addison specifically loves making all kinds of funny faces and such. Today they both wanted in on the fun.

I had some things I needed to do today, that may or may not have actually gotten done. Then we hit the grocery store. This was after dinner. When Addison had ate and ate until I was sure she'd pop. And as you can see she must have still been hungry. She fought like the devil to get food out of the cart and yelled ORGURRRRR over and over. And then I ran the cart into a whole display of Nutragrain bars and cause a huge mess. That I had to clean up, while Jake watched. Sigh.

Lastly we came home and I hoped they would go right to bed. No such luck. They are so excited about seeing BOTH of their grandparents that they were wide a awake at 10pm... The late nap probably did not help either. Finally we got them in bed at 10:30 and yes at 1:33am I am still awake. Don't ask.

What did you do today?







Thursday, December 20, 2012

Thankful Thursday...

I am thankful for the little girl sitting next to me eating her waffles and drinking her "milk" from her sippy cup. Thankful for the little boy who says "I wub you Momma" and says "No touch sissy. Back up" and moves his sister from harms way.

And thankful for one more day...









Tuesday, December 18, 2012

Yup... That just happened

Sharing a snack and some water when Blake burps and before I can say ANYTHING at all he giggles and says "Piggy Wiggy".

All boy I tell ya... All boy.


Monday, December 17, 2012

Mommy & Me Monday

NEW Feature- because mommy often finds herself behind the camera. :)

For fun, I also included some of our other great photos :)















Sunday, December 16, 2012

Sunday Fun-day...

It's that time of the week again... yeah you know, the time everything in your house stops, the tv goes from Disney to football and you can pretty much bet that your husband will be completely "checked-out" and useless for the next several hours. When yelling at the tv seems perfectly acceptable while the children nap or stare at their father thinking "you fool those guys can't here you... or can they?"

Rather then fighting the power, only to be disappointed, I'll give in this time and just sit right here on the couch and RELAX. Life as we know it can resume once again when the game is over... and as a result I'll either have a happy husband or a grump to deal with. Only time will tell......

How are you spending your Sunday?

Saturday, December 15, 2012

Santa Comes to Town...

First and most important.......

ADDISON HAS BEEN TUBE FEEDING FREE FOR 30 DAYS!

30 days ago I tube fed my budding toddler through her feeding tube for the very last time. Today I did a weight check and she is weighing 22.2 lbs, which is steady from a week ago. Which is also a huge accomplishment because as I mentioned, weight loss is typical with tube weaning and they won't take her tube out until she gains weight for 3 months in a row. So holding steady is actually on the right track. I am hoping that this means the weight loss is over and that we will be in the gain column soon.

To celebrate I thought "We should have cake, minus the icing because apparently my kids are allergic to cake icing." (Poor kids.) One of my preemie mom buddies suggested I let Addison and Blake help me bake a cake. And I really am thankful she suggested it because I would have thought about it later and wished that I had. But at any rate. Let me preface this with, I don't bake often, aka I do not have much on hand to bake from scratch or at a moments notice. That's ok with me though, because I am sure a box cake would be better then anything I could make, I tried that once so believe me...box cake is better. This meant a trip to the store. No biggie. I figured I could go after their nap, pick up the mix and such, come home and let them help me bake and hoped that by the time I was done Jake would be home from work to join in on the celebration.

I had talked with Jake during nap time and he indicated that he thought he wouldn't be to late, so I thought I'd check in after nap time and decide either to wait for him to get home and then run out to the store or just go before he got home and get started. After nap time he said he wouldn't be much longer, that he had just gotten to his last job. So I waited. And waited. TWO HOURS LATER, he tells me it's gonna be a while longer. (Plus an hour (+) commute home).

At this point I had found a recipe for some "butter cookies" and had everything it needed (butter, flour, baking powder, eggs, honey) so I had started that BUT the dough had to sit for a few hours in the fridge. I figured, we'll have cookies instead and play it by ear, if he gets home "soon" I'll run out. Otherwise it was time to start dinner and well...yeah. No going out at this point.

Jake finally got home. He wanted to take the dogs out for a walk first, and change his clothes and blah blah, normal "just got home from work" stuff. FINE.. I'll keep waiting. He finally comes back inside, and I head out. I am not gone TEN MINUTES... DO YOU HEAR ME TEN STINKING MINUTES... I have been home ALL DAY LONG with the kiddos... ALL.DAY.LONG. And Jake calls. What could he possibly want? I bet we are out of milk or something. Ohhhhhh no. He is excited. "What Jake, what?" I ask.

I am standing in the store, deciding on cake mix... WHAT DOES HE WANT.

Jake: "OMG... SANTA JUST CAME TO THE HOUSE."

Me: "What?"

Jake: "Santa. He just came through with a parade of fire trucks and brought goody bags to the door for the babies. I heard him outside, they were beeping the horns and stuff. SANTA WAS HERE."

And it's official. I hate Jake. I leave for TEN MINUTES. And Santa comes. Jake didn't get a single picture (he claims he didn't have a chance to lol). Santa drives through in this big ol' parade of fire trucks and gives my kids candy...WITHOUT SENDING ME A MEMO FIRST and I miss the whole thing.

Did I mention I was home ALL.FREAKING.DAY????????

So what did I do when I got home?

1.) I told Jake he could not discuss it. Instead I listened to Blake "Momma, SANTA.... truuuuuuuckkkkkk"

2.) I made a HUGE deal with Addison about it and told Addison, that because I am in fact the worlds best Mommy EVER, made a call to Santa to remind him (because we all know he sees you when you are sleeping and knows when you are wake, all that stuff, but is super busy) and told him I needed a visit to my house with a special treat for Addison because it as a big day for her and she was 30 days feeding tube free.

(I imagine in her head she is visioning me whispering on the phone late at night while she is asleep... "Santa, yes this is Addison's mom. Yes the one that you brought a Barbie Corvette for when she was five. Uh-huh, I am still mad about that because I wanted a Mustang NOT a Corvette. Yes Santa you can make it right. How you ask? Well as you've seen Addison has been a really good girl, and Blake has done a good job being a good boy, and well today Addison was went 30 days without a tube feeding, and I think you need to come and visit before Christmas so she knows that you KNOW. I don't care if you are busy. I expect you to arrive before bedtime."  And I further imagine that she thinks, "Mommy really is boss. She even went and personally gave Santa directions to my house, and that's why she wasn't here when he got here. She must have got stuck in traffic! My mommy rocks!".... Yes I do sweet Addison. Yes I do.)

Friday, December 14, 2012

Tragedy...

Today a man walked into a school and fired shots in a Kindergarten classroom. I won't discuss the politics or the details of it, I just won't do it.

Bottom line, innocent lives were taken. Innocent, defenseless, CHILDREN. Were taken from their families. Parents dropped their children off at school, only to never bring them home again.

My heart aches as a mom. I cannot imagine.

For a moment I am thankful that Addison and Blake are still to small to even begin to know what has happened. Thankful that I do not have to have that very tough conversation tonight about why bad things happen in this world. Thankful that I can protect them from this craziness for just a little while longer.

And heartbroken that so many other parents have to try to make this make sense to their children who bore witness to these tragic events. (How on earth do you make it make sense?)

For those that are reading this and have been effected in anyway, my heart goes out to you and your family. My thoughts and prayers to all involved. Tonight, my heart is heavy and I am hugging my babies tighter. I just cannot wrap my head around this.

Below are some resources for parents on how to talk to their kids about tragedies such as what took place today...

http://www.ncdhhs.gov/mhddsas/services/disasterpreparedness/MisterRogersFINAL.pdf

http://wtvr.com/2012/12/14/connecticut-school-shooting-how-to-talk-to-children-about-tragedy/


Sunday, December 9, 2012

Tube Weaning Update....

We had our appt with GI. According to their scale she lost 2 pounds (1. this is not uncommon when weaning from a feeding tube, but 2.) I am positive that GI's scale is so wrong. She was weighed the week before at the Ped office, and I weighed her on our home scale that same day for comparison. I also weighed her on our home scale the day of her GI appt too. She def didn't loose 2 pounds.), either way... GI's response to this was "What would you like us to do about her weight loss?" My response was, "Nothing. I won't go back to tube feeding her at this point."

I was SHOCKED when GI was "ok" with that. I really thought she would fight me on it a lot more. Instead we talked about Addison's daily diet and she offered me some other options as far as liquids that might be appealing to Addison, and things I could add to her foods to boost categories. She wanted to be sure that I understood that she needed to see Addison gain weight for three consecutive months without any intake via her G-tube, in order to give consent for it to be removed. I get that, and we are in no rush to actually (pardon the pun) pull the plug. I'd like to see Addison get through this winter/cold and flu season without a tube feeding first. (It's highly common for G-tube babies to stop eating or drinking when they get a cold etc, especially at first.) If she can make it through this without needing additional support then yes I am absolutely all for getting rid of it 100%, after all that is what we have been working so very hard towards, I am just not in a hurry. I'd hate to take it out and then see her need to have it put back in later. In other words, we just aren't there yet, but we are close.

One of the toughest things about this process has been calorie tracking and watching her liquid intake vs. wet diapers. For starters, she certainly isn't taking in the volume of liquid she was through her G-tube (again this is normal) so I am not used to the difference in her output. She still has wet diapers within what is considered normal (every 6 hours or less), but certainly not as wet or as frequent as they once were. And to be honest, it makes me crazy and wonder if she is getting "enough" (she is, I've asked). She "drinks" less then what is "ideal" so to compensate we are offering her purees... (Did you know?...purees/yogurt/other "wet" food count as liquid intake (ounce for ounce) and help prevent dehydration.) I worried myself sick until GI and the Ped both reassured me on this. This also means that we are going to have to work extra hard at increasing what she drinks as she moves away from puree food.

I've noticed that we are falling into a pattern where she eats REALLY REALLY REALLY well for a day or two and then just sort of picks a little for a day or so. Also, normal toddler behavior, but golly doesn't she understand and know that it's important that she packs on the pounds right now? The truth...she doesn't understand. In fact, she is just beginning to understand and learn what hunger feels like and how to satisfy her hunger. I can say this though... she is beginning to behave more like what I'd expect a toddler to behave like as far as food goes, or should I say, she behaves more like Blake. (Ya know my kid who eats anything and everything...Yeah now he is becoming picky, which seems to be age appropriate.)

She and I are learning together. It's our new adventure. Moving away from one (the tube) into another (the world of "real" food and "real" meals.) Not going to lie. Some of these days can be frustrating, but the reward that comes with it is incredible. She is learning to communicate her needs with me, she's gained three important new words "Milk", "Affle" (waffle) and "O-grrr" (yogurt). Which in turn means she can request what she'd like to eat, and therefor she is more willing to eat what she is given, a win for both of us.

But this has been no cake walk that is for sure. I cannot tell you the lengths I go through to get her to eat sometimes. Or how many times I have had to distract her with my cell phone and then thought "Just how much food is on my phone? Should I weight it?" <--- Not kidding. I really have thought about it. For some time, I was the only one who could feed her orally. Why you ask? Because I am a control freak. Because, there is a method to our madness here. Because I am her primary caregiver, I know the tricks of the trade to make things happen. It's a comfort thing between her and I and it's about trust. I know how much is too much on the spoon and when to take her cup away. Yes I could teach someone else I suppose, but it's hard to cram all that into one session and expect a person to remember when they aren't doing it on a daily basis. And we were actually discouraged from doing that by her OT, initially. Until she really became comfortable with eating and could manage things on her own a little bit better, and because what worked today wouldn't necessarily work tomorrow.

That part is getting better, to the point where I can give Jake a chance to feed her and allow myself a small break. And it's actually becoming beneficial to both Addison and Jake. They have now built that trust. (For the record, he has always been able to/and would tube feed her.) He has done an amazing job learning "how to feed Addison". I am very proud of him for that. Now I can go out to the store and leave them home with Jake and know that he can safely feed her.

We are still struggling with somethings, like her eating in a public place or with a large crowd (too many distractions). But our families are also learning, when we gather around the table for dinner, how to react and to keep things as calm as can be. Eventually we'll get to a point where she'll be able to manage her distractions, for now we just limit them. No this doesn't mean we don't ever go out eat. It just means we only do it on occasion and choose places that aren't as crowded, etc. and work up to it.

I am still struggling with giving her some space to have the control she needs while meeting her calorie needs. Our goal is to keep feeding as pleasant as possible for her and let her guide us, while still thriving. It's tough, but we are doing it. I haven't yet found the "perfect" solution. She eats a lot of meals in front of the tv, and sips on her cup throughout the day vs. drinking a full cup at once. Her Nissin Fundo impacts her volume and what she can tolerate which makes it tougher too. It's for certain a work in progress, but for today... My child is eating and thriving. I am choosing to focus on that while we move forward.

Everyday that she doesn't have a tube feeding is one step closer to our goal. I look forward to not having to try and count each calorie she takes in (and try and figure out just how many calories are in each meal I cook, or having to buy prepackaged meals so I know exactly what she is getting).

Please continue to pray for our sanity, and growth at this time. And if you notice that I myself have gained weight, blame Addison. It is for her benefit that I now have to cook fattier foods and I am way to lazy to make low calorie versions for Jake and myself nor do I have the patience.

Friday, November 30, 2012

Prematurity Awareness Month ...

Is coming to a close today. That doesn't mean awareness should end. Everyday we should raise awareness. Until no babies are born too soon.

I hope that you have learned a lot this month from our Spotlight on Preemies, and I hope that you continue to learn from us with each and every blog post. The effects of prematurity can last long past the NICU and sometimes even well past the first two years when Preemies are expected to "catch up" to their peers.

Soon will be forming our team for the March for Babies, and we hope that together you'll help us raise more awareness and support for this amazing miracle babies.

Tuesday, November 27, 2012

A Special Note from Addison...

Hello to all our blog followers!

This is Addison and I wanted to share an extra special message with you all. See Mommy and I have been working extra hard on my eating. Mommy says we are doing something called "Tube Weening" where I learn to eat and not rely on my "tubie" anymore. I admit I am just a little sad about this because Tubie is my best friend and really means a lot to me. But I really wanted to be a big girl. My Pediatrician said that he really felt like it was a good time to let me try and give me a little room to grow, so Mommy promised we'd work really hard at it and told me that it was my choice. She would let me decide if I was ready to be a big girl and become an oral eater. Mommy said I shouldn't be scared and she would help me along, we would get through this together.

So we came home and she talked with Daddy and told him the news. And Daddy said he'd even help too. (I also think I remember something about a pony too). A month ago my journey to saying good-bye to Tubie began. I can best describe it as a marathon and sometimes a battle of wills. (I let Mommy think she wins them all.) But my Mommy and Daddy didn't give up. They kept trying with me. I am so excited to say as of today I have been eating and drinking enough food that I haven't needed Tubie..... FOR THE LAST 14 DAYS!!!! Yup I have went TWO WHOLE WEEKS without a tube feeding!

I saw my Pediatrician again today and he was so excited to hear the news. He checked my weight and said that I gained appropriately and was still following my curve. He gave me some new goals for me and Mommy to work on and said that as long as I stay on my growth curve and do not fall below the 10th percentile, I don't have to use Tubie. Mommy will take me back to visit again right before Christmas so I can tell him all about the progress we are making and let him know that I have achieved the goals he set forth for me. Mommy says we are officially on the path to saying "Bye Bye Tubie", just 165 days to go (maybe a little more, or less). That's right if I keep being a good girl and eat and drink by mouth (even when I am sick, which also means taking medicine by mouth) that in a little less then 6 months time Mommy and Daddy will likely get permission from my doctors to let me take Tubie out FOR GOOD!

He even told Mommy that she can call and cancel my appointment that she's been waiting a year for at the feeding clinic! The best part was Daddy got to be there today to hear the good news too. He was so proud of me that he took me out to dinner to celebrate! We meet with my GI doctor again next week for a follow up and I really hope she will be excited and proud of me too...

Can you believe it? First I got to share all the turkey and fixings on Thanksgiving with Mommy, Daddy and Blake and now I am on my way to big big things! Before you know it I'll be graduating college, walking down the aisle and starting a family of my own. Ok so Mommy says she just can't think about that part right now because she's not ready for me to be THAT grown up yet, and Daddy says no boy talk so shhh...

So long for now, I look forward to updating my loyal fans again later.

Love,
Princess Addison

Friday, November 23, 2012

Spotlight on Preemies...Emily & Norah and their Mommy


Both of my daughters were premature. Norah (3) was born at 34w2d because of severe preeclampsia. She was 4lbs 11oz at birth. She had a 23-day NICU stay in which her main issue was learning how to eat. To this day, she remains an unenthusiastic eater. However, she is a smart, silly, affectionate preschooler who keeps me on my toes.
Emily (7.5m) was born at 35w0d because of low amniotic fluid, IUGR, and early signs of preeclampsia. She was 3lbs 8oz at birth. She had a 14-day NICU stay. Like her sister, learning to eat was the main focus of her NICU stay. Because of her low birthweight, it took nearly 2 months of hard work to transition her to breastfeeding, and now she is an eating machine and has quadrupled her birth weight! She loves to smile, but saves her biggest smiles for her big sister.
Being a mother of preemies has definitely changed my life and parenting. Even though my girls were late-term preemies, I'm more cautious about things. I also feel like it's given me more empathy for any mom whose birth experience didn't live up to their expectations. My faith is stronger because of the experiences I've had.
Prior to my daughters, I was clueless about preemies. I knew only one person whose late-term preemie was only in the hospital a few extra days. I had absolutely no idea what I was doing in the NICU. Having a second NICU stay was easier in some ways and harder in others. I had a very good idea of what to expect. I knew what I wanted, what I needed to do, and how to advocate for me and my child. I didn't have that culture shock like the first time. I spoke the language. However, it was so hard to have a NICU baby and a child at home. No matter where I was, I had to be apart from one of my babies. Having my whole family under one roof is something I don't take for granted anymore.
 handled the NICU experience better the second time. I was shocked by the whole experience the first time and it took a while to get my bearings. The second time I focused on what needed to be accomplished to get my baby home. The emotions took a few months to catch up with me.
To a new preemie mom in a similar situation, I'd recommend that you gear up for some frustrating days (especially if you choose to breastfeed). Dig into whatever backup supply of patience you have. Ask questions. Know that it's okay to feel overwhelmed. Take any help that's offered to you. Snuggle that tiny baby close and know that even though it feels like an eternity, she will come home soon.

Thursday, November 22, 2012

Thanksgiving 2012

First off, I admit I suck at keeping up with things like those 30 days of thanks. Not because I am not thankful, because believe me I am. I am thankful for more then 30 things... But mainly because I get busy, pair that with no internet and well there ya go. I am at the mercy of availability of one laptop and a nap or a moment of peace. So all that being said how about I just put my list all in one place, right here? Works for me.

Here it goes: (In no particular order...)

A forgiving and loving God, with whom all things are possible.

1.) My children... My Godchildren who taught me how to love someone other then myself, and my own babies Addison and Blake who fought for their lives and teach me more about life and what's important then I could ever imagine.

2.) My husband and our marriage... We've had our fair share of triumphs and defeat but we somehow always come out on top. Together. Some days he makes me crazy, but most days he is there to lift me up and make me smile. He is our provider (and a darn good one at that). If not for him and the sacrifices he was willing to make I would not be able to do what I do on a day to day basis. I couldn't possible love him more.

3.) NICU Nurses, Neos, OBs and MFMs who don't play around and get the job done. Those doctors and nurses who took care of my tiny babies when my body no longer could. It takes a special person to do what they do. They see live at its most fragile, and their fair share of heartache too. The staff at UMMC and Mercy will always have a place in my heart.

4.) Our family, each and everyone of you has impacted our life greatly. Our parents who have been the pillar of strength and encouragement in our lives, my grandmother who is simply amazing and who I am very greatful to still have in my life. Sisters, Brothers, Nieces, Nephews, Cousins...all of you. What hasn't divided us has made us stronger. I am so thankful to have each and everyone of you in our lives.

5.) Advances in medicine, treatment for Cancer, the amazing medicines like Surfactant that played a huge role in Addison and Blake's survival. Steroids that helped Addison finally come of a ventilator (not once but twice), and steroids that I was given to help mature their lungs while in utero. I wouldn't want to know how they would have done without them. Antibiotics, I think between my pregnancy and the twins NICU stay we've tried them all. They were key in our survival. IVF and medicine that helped us get pregnant.Things that we didn't have 20 years ago, which would also mean I wouldn't have my babies.

6.) Amazing friends. Lets face it, I am tough to handle sometimes and I've got some pretty amazing friends who love me at my worst and help me back to my best. Friends that welcomed my family into their lives as if I was their own family. Friends that without a second thought offer to help us out on adventures when Jake is working, and keeps me from loosing a kid in the zoo or at the park ;) I can never repay you for that.

7.) My preemie pals. The group of mom's who has supported me and cheered us on, thru the NICU and beyond. They say it takes a village to raise a baby, they are my village.

8.) Preemies! (Not just Addison and Blake)...These fragile, tiny, fearless, amazing, courageous little people who show us the true meaning of life. Taught us to never take a single moment for granted  because in a moment it can all be gone. Taught us to celebrate even the tiniest of triumphs. Nothing is too small in the preemie world. I can certainly say that having two preemies of my own, I absorb so much more and notice the little things.

9.) My furbabies. Unconditional love and slobbery kisses and cuddles. That bark that possibly saved our lives when our neighbors hows was broken into months ago. And the exercise ;)

10.) Sleep. The fact that most nights Addison and Blake sleep 10-12 hours. And I still get a decent 2-3 hour nap during the day, when I can nap myself or take care of things that are sometimes hard to do with babies under foot.

11.) Our home. A house is just a house without a family to fill it with love. I am glad for the love we have within these walls and the amazing surrounds at our new place. So thankful for this opportunity.

12.) Jake's job. Yes his job takes him away from us for lots of long hours and several days a week, but it makes us cherish those moments together more, and gives us an opportunity to have the situation that we have now. This is the same employer who two years ago, gave Jake a lot of time and worked with him when our family needed him most. Because of his job and the amazing people he works with, he was there for every appointment during my pregnancy, to hold my hand thru the fear and uncertainty. He was able to be home in the evenings when I needed him most while on bed rest, and most importantly he was able to be there when the babies were born and that first week after. Not many employers would have been so understanding. I can never thank them enough.

13.) Our troops, who sacrifice it all to defend our nation and keep us safe.

14.) Cell phones....a modern convinence that can allow me to share instant updates on the babies and keep our family connected (Man that sounded like a commercial for AT&T, lol).

15.) My dad, who even though is no longer with us on earth, still impacts our life by watching over us and I can't help but believe that he still leads us in his own way. He taught me what hard work and sacrifice was about and sat the standard for the men in my life (I have to say that I think Jake is hitting that mark and beyond).

16.) Having just enough... Enough food to fill our bellies, enough money to pay the bills and keep us warm. Enough to be able to make ends meet no matter the circumstance.

17.) Memories. Pieces of my childhood, family that has since "went home", all things that warm my heart and remind me just how lucky I am.

18.) My Godparents who spoiled me rotten growing up and shared part in many of my life experiences.

19.) Addison & Blake's Godparents who took a vow to help us raise them right and shower them with love from near and afar.

20.) Playdates that allow Addison and Blake to interact with other kids, nurture and encourage their learning and growing.

21.) Macy's Thanksgiving Day Parade... A fond memory and tradition that I get to share with my children. It's nice to have one constant in this ever changing and evolving world.

22.) Online shopping that allows me to avoid crowds at stores, and have bulky gifts delivered to our doorstep.

23.) Kindness of strangers. Walking into the mall and a person stops to hold the door for the BIG A$$ stroller lol. The receptionist at the doctor's office who goes above and beyond and offers to walk me to the car and load (at the time) two infants into their seats.

24.) Tears that cleans the soul and need to fall in order for me to pick up and move on.

25.) Being able to watch my daughter take her first bite of food, and then her second and third...etc. And knowing that as we gather around and give thanks today, she will share our dinner with us and finally all the pieces will be together finally.

26.) Heartache <---- who would be thankful for heartache, but seriously. It's molded me into who I am. Without heartache and struggles I wouldn't know how to appreciate what I have.

27.) Sunshine, because seriously, sunshine makes everything better.

28.) Wine & bubble baths - sometimes us mommies just need to relax.

29.) Miracles.

30.) Cuddles and "love yoouu" 's - I wanted a long time to hold my babies, and even longer to hear them cry, unsure in the beginning if we'd even get the chance. (I'll never forget the first time I heard the sound of Blake's fragile cry, that tiny little whimper similar to a kitten cry), and now to be able to cuddle with them in our bed, or on the couch, or anywhere we please. And to hear Blake mumble "Lub uuuuu" and Addison mumble "ub". True love. <3

I hope each and every one of you have a great holiday and take a moment to count your many blessings. If you are traveling stay safe...... HAPPY THANKSGIVING FROM THE PASCOE'S.

Wednesday, November 21, 2012

Spotlight on Preemies...Tristan and his Mommy



From one of my favorite preemies... Check out Tristan and his Mommy over at www.urbanflowerpot.blogspot.com

Who is "your" preemie? (daughter, niece, grandchild, friend) & Tell me a little bit about him/her...
I started out with one preemie, but now I have many. My son, Tristan, was born at 30 weeks. We’d had a house fire one month prior and lost everything, including my cats. The doctors speculate that the stress from that is what caused me to go into premature labor; I had a textbook pregnancy until the night I delivered. He was almost born at the tequila bar/restaurant where I was working but luckily we were a few blocks away from our hospital and we made it just in time for me to deliver. I was in shock.
How would you say YOUR experience with this preemie(s) has affected you?
I never knew babies so little stood a fighting chance. I see babies tough fighters now; they are so strong.
How were you able to handle the NICU experience?
By crocheting. I’d drop Tristan down my shirt to “kanga” or “go roo’ing” as I’d say, then my hands would be free to hook. I made a huge pile of flowers. Some were turned into coasters for friends, and the rest hang in our living room like a pennant.
I also took a lot of photos and decorated his isolette/crib. Sleeping with his hats and “quilts” brought me strength and comfort and doing his laundry made me feel like a mom.
Before this experience what did you know about preemies?
I knew that it meant they were born before their due date; and I had a Cabbage Patch Kid Preemie when I was little.
What have you learned from all of this?
Never underestimate a child weighed in grams – or the parents who love them.
What advice would you give another person in your situation?
Focus on your child and not the machines. Do whatever makes you feel like a mom – take their temperature, give them baths, tuck them into little outfits and cozy blankets. Read them stories, sing them songs. Find a support group of women who will understand. You won’t fit in with people who don’t have children – nor with the moms who had full term babies for a while. Don’t let yourself become isolated. Community is so important.
Anything else you want to share?
I began by saying that when I began I had one, but now I have many. He is a toddler now, but along the way I met other preemie moms to lean on. We have shared our joys and sorrows, our aches and pains, our delight over any little thing – whether it’s an ounce gained, a mL swallowed, a step taken, or a first word. They are my best friends and their children matter very much to me. I delight in hearing from them every day and meeting up with them when I can. I call them Tristan’s Gang o’ Preemies.
It’s hard being a preemie mom – but the community will embrace you.

Tristan Then & Now (6 months and 18 months)


Tuesday, November 20, 2012

Spotlight on Preemies... Ty and his Mommy


Who is "your" preemie? (daughter, niece, grandchild, friend) & Tell me a little bit about him/her...
Tyler is my son. He is 21m actual and 18m adjusted. He is the happiest and most awesome little guy I know. He is hilarious, mischievous, smart, and a total joy. He is an amazing, strong, and determined boy.
How would you say YOUR experience with this preemie(s) has effected you?
How has it not effected me? Once I was asked to choose 4 things that defined me as a person. Having a preemie was one of the 4 that I chose. I know WAY more medical terms than I ever wanted to know. I know pain, heartache, stress, sadness, frustration, and loss in ways that I never wanted to. I also know joy, happiness, excitement, and gains in ways I didn't expect. I take nothing for granted with it comes to being a mommy. I have also met the most amazing women because of having a preemie... and without those women, I wouldn't be who I am today either.
How were you able to handle the NICU experience?
I had a lot of support from my friends, family, co-workers etc. It was really really rough... but one thing that also helped was that we were transferred to a smaller, local hospital pretty early on and at times we were the only family in the Special Care Nursery. The most babies we saw there was 6 and 3 were triplets. Having a closeness and a wonderful relationship with the doctors and nurses was also key.
Before this experience what did you know about preemies?
I had a friend who had 27 weekers and lost one of the twins at 2 days old. Her experience was about all I knew.
What have you learned from all of this?
Everything. But what stands out is that I have learned it's ok to be strong and weak, happy and sad, scared and excited all at the same time.
What advice would you give another person in your situation?
Find support of those who have been there. People need to know that their feelings are validated and normal. They want to hear stories and thoughts and ideas. The only people who understand, are those who have been there before.
Anything else you want to share?
Although I wouldn't wish a premature birth on anyone, I know that it has changed me for the better.

Monday, November 19, 2012

Spotlight on Preemies... Zach and his Mommy.

Who is "your" preemie? (daughter, niece, grandchild, friend) & Tell me a little bit about him/her...

"My" preemie is my son, Zach. He was born at 26w3d gestational age for unknown reasons. I was having a picture-perfect pregnancy right up until the point where I walked into the hospital and had a baby. He was born 300 miles from home while I was on a business trip, which made things extra complicated. He spent 70 days in the hospital and turns two in January.

How would you say YOUR experience with this preemie(s) has effected you?

I will never be the same person I was before having my son. I'm a completely different person. I divide my life into my naive pre-Zach life and my more aware post-Zach self. I appreciate him so much more than I would have if he had been born at term, I think. And I have so much more empathy than I did before my son was born.

How were you able to handle the NICU experience?

"You never know how strong you are until you have no other choice." People commented frequently that we (my husband and I) were such strong people for dealing with the NICU experience, but, at the time, it felt like it was the only option. We had to just survive day-to-day.

Before this experience what did you know about preemies?

I had a fair amount of preemie knowledge before Zach was born. I have a friend whose daughter was born at 24 weeks. After struggling through 8 days of life, she passed away. I also have another friend who had a 28-weeker. While the baby was in the hospital for many weeks, he was generally fine in the long run. When Zach was born at 26 weeks (right in the middle of these two preemies), I was very aware that it could really go either way with him. Luckily, he was one of the lucky ones.

What have you learned from all of this?

I've learned how to be a health advocate for my child (and myself). I've learned to have faith in myself. I know that, no matter what happens in the future, I'll be able to get through it.

What advice would you give another person in your situation?

Just take it an hour at a time at first. Then, take it a day at a time. Try not to look too far ahead, and try not to be disappointed by any setbacks. Those things are almost impossible, though. You will look ahead, and you will be disappointed by setbacks. That's okay, too.

Sunday, November 18, 2012

Spotlight on Preemies...Bryn and her Mommy

My preemie is my daughter Bryn. She was born at 32 weeks because of low fluid. At 3lbs 15oz and 16 inches long, she was just about the biggest baby in our NICU at the time. She spent 3 weeks in the NICU and was then transfered to Mt Washington Ped Hospital for another 10 days. Before Bryn was born I didn't know much about preemies. Everything was very new to my husband and I. We had a son already but he was full term and even though he had some issues when he was born they were VERY different than those of our preemie. My husband was scared to hold our daughter. It broke my heart. I felt like it was somehow my fault that our baby was so small and fighting for her life. I suffered for a liong time with depression. I was able to some how pull it together to care for our son at home and finish my college courses with 3 B's and 1 A. After our daughter came home, I didn't go anywhere unless she had a doctor's appointmet (which we had alot of) I even have people still telling me they didn't know I had another baby....She's a week shy of 2!!! Having a preemie has made me so much more thankful for the hard work of the doctors and nurses. I am more aware of what is going on with my children, I will see a rash before it's there and I can hear if they breath harder than normal. I sometimes over react but I think that is normal of any parent....lol I was able to make it through the NICU with the support of my husband that knew I was stressed and when I started a fight about the color of his socks one Sunday morning he just smiled and said "Ok you don't like them, I will change them." I also cried more than once to the doctor and nurses that cared for my daughter. I would cry to a complete stranger if I thought I would feel better when I was done. I prayed harder and more in those 31 days than I think I ever had in my whole life. I have learned how to be a better person and a better mother. I now know what a PFO and what SVT is. I know how to feed my baby through a tube thats sticking out of her nose. I can check her temp with my eyes closed. I know how to check her heart rate with her even if she is screaming. I also know now that no matter how hard my life is, someone out there has it worse. Nothing that anyone says can prepare you for what you will go through in the NICU. People can tell you what they went through but what you go through will be based on your child. Each child is different but the power of prayer is amazing!!!!

Saturday, November 17, 2012

Spotlight on Preemies...My Preemies

Today is WORLD PREMATURITY DAY... We are wearing purple for preemies all around the world.

In honor of today I guess it's only fair that I answer my own questions right in my Spotlight on Preemies?

Here goes nothing:

Who are your preemies? Tell me a little bit about them...

My preemies are Addison and Blake. Born at 26 weeks (14 weeks early), weighing (Addison) 1lb 10ozs & (Blake) 1lb 14ozs. Addison had quite the rough start...her sack ruptured at 20 weeks and against the odds I was blessed enough to stay pregnant until 26 weeks (just two short weeks past what is considered viability). And infection is what ultimately caused me to go into labor on Valentine's Day no less. Addison had Chorio and my OB mentioned that had we waited any longer we would have lost her and that Blake was coming close to being infected too.

Addison spent 153 days in the NICU and atleast half of those days were spent on a ventilator or some type of O2 equipment. Within her first day of life she had coded upon admission to the NICU, was on the Oscillator and had a chest tube for a collapsed lung. I will never ever forget that first night, starring at Dr. K as he asked us "How far do you want me to go? Things are not looking good and even if I do all I can it may still not be enough." And being asked if it was our wish to have our daughter baptized that night, as it was a grave situation. But I will also never forget that next morning when he said "I cannot explain this. All I can say is will we take it minute by minute and do all we can to support her in anyway we can."  Nor will I forget day 153 when Dr. K walked in her room as the other Neo was writing her discharges papers, with such pride and amazement, congratulating us on defying the odds and bringing our baby girl home. She suffered bilateral (3 & 4) brain bleeds, that were resolving at discharge but their long term effect has yet to be seen.

Blake had a slightly shorter stay at 105 days. He too did some time on a ventilator, extubating himself on more then one occasion, CPAP and Nasal Cannula. In fact he even came home on oxygen and a monitor for feeding. (Addison did not.) For the most part his stay was mostly uneventful. We had a MRSA scar and a Grade 3 brain bleed which resolved on its own prior to discharge. To date he doesn't seem to have any lingering effects of his prematurity and we hope that this will hold true for the future.

How would you say Your experience has effected you?

I would say this whole experience has changed me dramatically. It's made me a better person for sure (atleast I think so anyway). I found strength I never knew I had. Suddenly little things that I thought were important didn't matter. I discovered what really was important. And I learned to love beyond measure, never take a moment for granted. Things change in the blink of an eye. And I also found a renewed faith in God. And it made me tougher, and not as easily manipulated. I knew I had to stand up for my babies, advocate for them and be their voice. I hated confrontation but suddenly my mother bear instincts kicked in.

How were you able to handle the NICU experience?

I was able to handle it with a lot of support. From my husband, our family and our closest friends. I also needed to talk to other people like me who knew what I was going through. Finding a good support system is truly what helped me survive.

And truthfully that is all I did... survive. I ran on pure adrenaline for months. It wasn't until after they came home from the NICU that I truly began to process it all.

Before this experience what did you know about preemies?

Before my water broke? Little to nothing. I knew preemies existed and what "defined" one. I also learned that a friend of mine had a 32 (?) weeker just after I made it into my second trimester, and that she survived and was doing well. I didn't know all the details but I knew she had a NICU stay.

After my water broke? Maybe a little too much, and maybe not enough. I immediately started googling statistics and success rates and a million other things. I reached out to other mom's on bedrest and even other preemie moms, because at that point we pretty much knew it was going to happen, we just didn't know when. In some ways I feel like those 6 weeks of research and wondering gave me hope and prepared me for things that some preemie moms didn't get the chance to prepare for. Did it make it any easier? I am not sure, but I think it did impact the way I looked at somethings. But I was still in no way truly prepared for what laid ahead of us.

What have you learned from all of this?

One, not to be brass, I learned who my real friends were. Who was going to stick by us no matter what and who would really "understand" (as much as one did understand without first had experience).

I also learned that even the best laid plans do not always work out. Things were way beyond my control and there was very little that I actually did have control over. I learned that I had to have faith.. in God, and in my fellow man. Faith that someone other then me could save my babies.

What advice would you give to another preemie parent?

Find a support group. Advocate for your child. Only gather information on things that effect you or your child in the moment. Don't read too deep into other preemie conditions or what ifs. Stay focused on the moment. Even though it is extremely hard to do, take a moment for yourself. If it means you don't wake up in the middle of the night to pump breast milk, take that break. You have to make time for you, because you will need that energy to keep going. And be prepared for the roller coaster. The first few days can sometimes be the honeymoon phase, be prepared for it to get worse and be surprised when it gets better. There will be a million ups and downs and then things will stay status quo and it will feel like years before you baby is home. Trust me that this too shall pass, and it will get better.

My babies alone have impacted the lives of many around them. They have a purpose in life and a story to tell. They have changed my life in so many ways.

If you someone you know has a preemie, be there for them. Offer to bring them dinners, clean their house, cut the grass, walk their dogs or simply just listen. Don't ask questions just let them talk to you.

Prematurity Awareness Day 2012 - We are 1 in 8

Sharing our story again.

Addison and Blake
Born - Feb 14 2011 @ 1:10 pm & 1:11 pm
Weight - 1 lb 10 ounces (Addison) and 1 lb 14 ounces (Blake)
Spent - 105 (Blake) and 153 (Addison) days in the NICU

How did it happen?
I don't have an honest answer to that.

We tried for 4 long years to conceive before turning to IVF. I started out with 9 eggs, only 7 fertilized and then each day we lost 1-2 of those now embryos. By day 5 (the day of our transfer) we had 4 embryos (2 AA's and 2 AB's...talking quality of embryos, AA being the best of the best). We were given a choice that day, put back 1 embryo or put back 2. The remaining would be harvested for another 2 days and then frozen, if they made it to day 7. We opted to put back our best 2, the remaining two did no make it to freeze.

Two weeks later I was seeing double lines on several a home pregnancy tests. And had my first beta quant & Progesterone (blood draw to check hormone levels) and my second which showed good doubling time. Four weeks after that I was laying on the exam table with Jake by my side and looking at not one but two beautiful flickers on the screen. The RE mentioned at that time something about a SCH (sub-chronic hemotoma - Gathering of blood between the membranes of the placenta and the uterus), said it was something we would just watch and that it may just go away on its own. We had another ultrasound two weeks after that to confirm we were still on track and then our Infertility Specialist (otherwise known and a Reproductive Endocrinologist) graduated us and sent us on our way to our first OB appt at 10 weeks.

One November day, just shortly after we entered the second trimester (that place where you take a breath and think "this is it, we have entered the 'safe zone'"), and after our now 3rd ultrasound (where no mention of the SCH even exhisted, so in my mind thinking it had resolved)...my worst nightmare happened. I was at work, on phone call when I felt something. Something wrong. A felling like I had just gotten my period. But wait I'm pregnant this shouldn't be happening. I ran to the restroom and my heart sank. It was happening... I was terrified. God had given us these two babies and now he was taking one (or both) of them away. My mind was racing. My boss got ahold of Jake while a coworker drove me to the closest ER, where we waited in agony. Finally after numerous tests and yet another ultrasound, doctor's confirmed that I had a UTI (common in pregnancy, but my first EVER) the SCH was gone and was likely the culprit of the bleeding BUT we still had two beautiful babies growing and hearts beating. I was told to follow up in three days with my OB and go from there. Relief.

At this point we also switched OB's because the first OB we chose did not feel it was important to see me and follow up on the bleeding, rather she insisted I just keep my next scheduled appt - which was several weeks out. The next OB we went to had me in his office (as a new patient) within a few days to make sure everything was still on track. We also made the decision at this time that I would quit my job (atleast for the remainder of the pregnancy and potentially the first year), I was a miserable pregnant person who couldn't sleep, barely ate, and was constantly sick. That paired with being put on modified bed rest as a result of the bleed episode, sealed the deal.

We had a few weeks of pure bliss. We were looking forward to Christmas with our families, and planning for a 4-D ultrasound (and hopefully gender reveal) just before Christmas Day. We spent our evenings curled up narrowing down names and counting down days. But it wouldn't be long before fear crept in again. At exactly 18 weeks, I got a phone call from the OB saying that one of the blood tests done to check for birth defects had come back high. He assured me this was not uncommon with twin pregnancies and often was simply a false positive but to be safe he was scheduling me with the Center for Advance Fetal Care, (high risk-Maternal Fetal Medicine). He was able to work his magic and have us seen at the Center for Advance Fetal Care on Dec 23 (just before Christmas Eve). I was extremely nervous but excited at the same time. I prayed everything would be ok and that we would have the chance to see if it would be Team Pink or Team Blue.

Things did turn out well that day, there was nothing visible on ultrasound to indicate a birth defect in either baby, even with our family history we were at a low risk for any defects, and the only other option was Amnio (which we both agreed to decline, a personal choice, but in our minds knowing would not change the outcome, nor would it change what we would do with the information). We also found out that day that we were having a GIRL and a BOY. I'll never forget Jake holding his breath from the time the tech announced "Baby A is a girl" until she announced "Baby B is a boy". She asked if we picked names and without a second thought we said "Addison and Blake."

We shared the news with our parents right away, and then told the rest of our family on Christmas. Everyone was excited and overjoyed. Life was good again. For a few weeks that is.

Week 20 - I remember rolling over in bed and feeling like I had wet myself. Silly babies must be sitting on my bladder. But these little accidents kept happening, with more frequency, even if I my bladder was empty. Then I had some spotting again so off to Labor and Delivery we went to be checked out. I was discharged and told everything was fine. A few more days went by and it just got worse. The OB sent us back in to L & D and this time someone listened to my complaints. There was still no for sure indicator that anything was "wrong" but she did an ultrasound to check fluid levels, found Baby A (Addison)'s a little low but nothing alarming. Sent me home and told me to call Center for Advanced Fetal Care first thing in the morning and have another ultrasound done that day to check fluid levels again.

This was the day that flipped our world upside down. We went in to Center for Advanced Fetal Care, they did our ultrasound and I could see it in her face that something was wrong. She measured fluid on Addison and it was much lower then the night before. The tech left the room and came back after what seemed like eternity with the doctor. From that point things got blurry. I heard words "Micrognathia", "VSD & ASD - heart defects", "Very low fluid", "Risk for infection", and then one final blow "Termination". At the sound of that word, Jake stood up and fought back. (From an older blog post recounting the details...) The first words out of the Peri's mouth was "consider termination of twin A, it would be better for twin B and then we could test twin A for genetic disorders." And as Jake put it, "Hell no. Our little girl is not some statistic or science fair project. She is a living human being, if she decides to give up then so be it, but right now today she has a heartbeat and is alive. Whatever comes our way, she is ours." I know now my water broke with Addison, it was never continuous, the doctors speculate that when she was resting she was laying on the hole and when she'd move I'd experience the leaking, she'd stop moving when she ran out of fluid until it rebuilt. There were ultrasounds that could support that theory. We'll never know for sure.

I was admitted to the hospital that day for a round of antibiotics. They called in the Neo for a consult, and he explained what happened to babies born at 20 or 21 weeks. I less then politely asked him to leave. I DID NOT want to be told that if my babies were born in the next few days (which they were all sure they would be) there was nothing they could do. They would wrap them in a blanket and keep them warm, and just allow them to slip from this earth. The attending OB said that with no fluid Addison could be born "frozen", should we make it that far, and suffer long term effects. My OB shrugged it off and said "It could happen but realistically you won't be pregnant long enough for that to be a real issue, it's treatable." I got to come home after the antibiotics because there was nothing they could do. I'd continue to see my OB and the MFM weekly until 24 weeks when I'd get steroid shots and they would then reccomend that I remain on hospital bedrest.

I came back for the steroid shots, stayed the weekend until I had completed a full course of those, and then after much debate and thought and discussion, decided I would finish the remainder of my pregnancy at home on bedrest. It wasn't what my doctors "wanted" or "reccomended" but it was what Jake and I both felt was right in our hearts. The MFM even said to us, while he could not give us the ok to leave, he had to agree with what our reasons were. Either at home or at the hospital I was at risk for infection, infection would send me into labor, or worse. However I would be A LOT more likely to contract an infection in the hospital that at home in my usual environment. They would do nothing more for me at the hospital then I couldn't do for myself at home, with the exception of putting the babies on the monitor (which at this point I could feel their movement enough to know if something was up) - temps twice a day and no leaving the bed except for bathroom breaks and a 5 minute shower. I still went to doctor's appointments twice a week for monitoring and each time they talked to me about staying.

I have no way of really explaining this, honestly, but at the time I really felt like it was THE BEST option for US. In my mind, if I was at home, I would stay pregnant longer. (Denial.) If I was at home, there would be "time" for Jake to make it to the hospital or to me. (Fear that I'd be alone. Fear that he'd miss the birth of his babies.) I really honestly believed that the stress of being alone in the hospital day in and day out while life went on without me, would send me in to labor sooner rather then later. At home I stayed in bed and played by the rules. I counted down the time until Jake was home and I could have 5 minutes in the shower. My grandmother stayed with me a few days a week to keep me company. Jake packed meals for me in a lunchbox at the bedside. He washed and changed bed sheets every day. He cooked, shopped and cleaned. I began researching and reaching out to other people on bedrest or with preemies. I found some amazing ladies on www.thebump.com who saw me through my darkest days. Looking back would I do it differently? I can't say. Would I do it the same should it happen again? I don't know. We did what worked at the time.

And then exactly six weeks after it all began. Exactly 26 weeks pregnant, I woke up feeling odd. Just off. I couldn't place my finger on it but I ached all over. I begged Jake to stay put and not go to work. Convinced myself if I just got a shower I'd feel better. I couldn't stand in the shower, it hurt too much. Jake helped me dress and off to the hospital we went. I knew in my heart that day was THE DAY. We were going to meet our babies. Before we left the house, I had no fever...when we got to the hospital (20 minute drive) I spiked a temp. They couldn't pick up contractions on the monitor at first but Addison's heartbeat was doing some funky things. My OB came in checked me out and said "Book the OR." He consulted the MFM who agreed that it was time. And before I knew it they were here.

I remember that they didn't cry. I remember that they briefly showed me Addison as they whisked her to the NICU, but sadly to this day I do not remember what she looked like. I remember a blur. Jake got to see Blake before he went to the NICU. All he told me was that he was perfect. I remember being delusional, excited, happy, and absolutely terrified. Honestly for the first few hours after they were born I was in some major shock and denial. I knew what could happen, but until during our very brief visit to the NICU (while on a gurney in route to my room on the post pardum floor) where we were asked if it was our wish to Baptize Addison, and informed us that now would be the time, and until Dr. K walked into my room later that night to give me the grim outlook, it really hadn't hit me. It was like I was going to wake up from this bad dream and still be pregnant or have two full term babies.

Our daughter was baptized the the hospital Chaplin, surrounded by machines and wires, doctor's and nurses. My Labor & Delivery nurses bore witness and held hands with Jake and I as the Chaplin prayed. It was nothing like I envisioned. I had to wait 5 days to hold our son, and close to a month to hold our daughter. We cried many many tears. Our hearts ached like never before. For months we lived in fear that the phone would ring bearing bad news. I admit this today, we feared we would be planning a funeral for one if not both of our children before they even had a chance to meet the world.

Every year 1 in 8 babies is born too soon. Many of those babies loose their battle long before it's their time. (Per the March of Dimes, every 30 seconds a preemie dies.) I know first hand just a fraction of these families who have lossed their preemie. That's a heartache no parent should EVER have to endure! Prematurity is a cruel thing. It robs parents of so much and can lead to a lifetime of delays, special medical care and various other things for the children. I hope all of our friends and family will do their part today and wear the color purple, to honor, remember and support these preemies and their families.

For more information on Prematurity or to make a donation to the March of Dimes to help find a way to prevent premature births and fuel more advancements to help these preemies over come the obstacles that stand in their way please visit www.marchofdimes.com today.