The Aftermath

(**Authors note: towards the end I talk about infant death, if this subject is a touchy one for you, I advise skipping this post as it may be a possible trigger. I do not wish to upset anyone with this post. Thank you for reading, as always.**)


The average loaf of bread weighs about a pound and a quarter.

Imagine holding three loaves of bread. Not too heavy, right? They're not going to weigh you down hardly any. You might buy so many on a large trip to the grocery store.

Now, imagine holding two loaves of bread. You might feel like you're carrying bags of air. Maybe you'll put one in the freezer when you get home and forget about it for a week.

Now imagine holding a single loaf of bread. You might think its just bread, another thing you have to buy though you might not use it much.

Now imagine those loaves of bread, one, two and three of them, are new born babies that weigh the equivalent. They're about the length of your forearm, about the same size around it too. Their heads comparable to a baseball, doll clothing either fits perfectly or smothers them.

When Caiden was born he weighed 3lbs 8oz. That's just under the weight of three loaves of bread. However, compared to a lot of other preemies, that's huge. Plenty are born weighing as little as a single loaf of bread, often even less. Unless you've seen these tiny children in person, their size is a little hard to fathom. Even for me, sometimes its hard to imagine how a baby could possibly be any smaller than he was and still survive.

We are extremely aware how lucky we got with Caiden, I was allowed to labor slow enough to grant him a few extra days in my womb. Precious hours, minutes and seconds that reduced the number of days and weeks we would spend in the NICU. So many others aren't as lucky. So many others are taken even earlier than Caiden was, and so many others born further along face the same if not greater walls to overcome.

Before Caiden was born, before I had even gotten pregnant, I was admittedly oblivious to the world of preemies and parenting a preemie. I knew that the further along I was when I delivered the better chance he had of surviving, but I don't think I realized that it could actually happen, especially not to us.

So many people who hear our story ask the same questions and say the same things.. "Why aren't you over it?" "How can you focus on what happened when he's doing so well now?" "You should be happy this or that didn't happen.."

The answer to everything is a simple one: the experience alters your perspective on absolutely everything in your life.

It takes a preemie roughly two years to catch up to a full term baby born at the same time in regards to size and development. Despite countless people telling you not to, you will always compare your preemie to other babies, both premature and full term to look for warning signs in development. We are taught to look for and expect obstacles while raising our preemies. The first development screening is scheduled for us before we are even discharged from the NICU.

Many will face lifelong disabilities and diseases directly related to their preterm birth. It is unfortunately extremely common for premature babies to be born with bleeding in the brain, which is often times severe. Thankfully for preemies, babies fare better than adults with brain injuries, however it could still cause anything from blindness to mental retardation.

You acquire a mass of knowledge on subjects you had never heard of before. Things that in a perfect world, no one should need to know, and yet in a matter of days or weeks you become an expert, no schooling required.

And still, despite some of the greatest medical advancements, many babies born too soon will die. They won't know anything but their own suffering, and the massive amount of love their family has for them. They won't grow up to be singers, dancers, teachers, scientists, or even president. They won't cure cancer or end world hunger. They won't have their own husbands, wives or children.

You will have a memory, and a heartbreaking one at that. Every preemie parent knows this possible outcome and fears it long after coming home. We will constantly rejoice over achievements and cower in fear that somehow, they might be taken away from us.

It makes you think, if one in eight born in the US are born premature, how many of the people you grew up with were preemies? Have they changed your life or made an impact? How would your life be different if they hadn't survived?

A Step In The Right Direction

Yesterday Caiden received his last set of shots of the RSV vaccine (for information on RSV please go here). I asked the doctor if he would be eligible for next season and he won't be. Apparently here its only for preemies with a low birth weight who are six months or younger at the start of RSV season and babies with lung/heart disease up to age two. I thought preemies were eligible up to age two as well. If his doctor decides that he needs it next year we'd have to fight the insurance company. For a drug that's $2,000 per shot, and Caiden gets two each visit (dose is by weight), it wouldn't be likely that we'd win.

I'm a little torn between relief and anxiety. Next RSV season he won't have to get the shots every month but I know I'm going to be extra worried about him catching something. Every time we'd go for his monthly dose I'd feel horrible for him having to be there. The shots are painful. The needles are longer than average, they go deep into the muscle and the dose is large one. Had he not been premature, he wouldn't have needed to get them. I did appreciate that though he had to suffer through them, it was better he got them than have to deal with contracting RSV. Hopefully next year he'll be healthy enough so that if he does contract it, it won't be too bad.

It was nice to be able to see how much he weighs every month though, to go from him being weighed every day in the NICU to just at doctors appointments is quite the change. I have a good idea of how much he gains in a month though so guessing a close number isn't hard but its reassuring that he's gaining and growing the way he's supposed to.

Some days its hard to believe he was a preemie, but you never forget. He's done so well since being home, he's hardly even been sick. I think its partially because of the vaccines and because we've been very careful about him going out and being exposed to germs. After he came home from the NICU I bought a tag (pictured below) to hang from his infant carrier to ward off wandering hands of others. We've since moved to a convertible car seat so when we go to the stores he sits in the cart protected by a cover. Since he's still not sitting up on his own its a little difficult but we manage to make it work. I'm trying to figure out where I can put the tag so people can still see it.

The other day however, we were leaving the store after grocery shopping and I was putting his jacket back on (it was nice enough here that he didn't need a heavy coat). A lady walked up to us and started talking to him. For the most part I'm used to people talking to us. They tend to comment on his hair as its always sticking up no matter what I do to it. I just smile and answer their questions. This woman however decided it would be a good idea to try and run her fingers through his hair. Thankfully I managed to pull the cart away and asked her to please refrain from touching him. 

Even though I was polite she still made a rude comment and proceeded to storm off. Now I don't mind that I may have upset this woman, you simply don't touch another person's child without permission. She's lucky I didn't take it any further. I shouldn't have to explain to every curious passerby that he's a preemie, even this far out from the NICU he still has a delicate immune system. Preemie or not, its just one of those things you don't do. 

To purchase one of these signs please go here.

*I am not the owner of this company and don't benefit if you purchase one of these. As someone who's gotten great use out of ours I am only looking to pass along a wonderful item to other parents.*

Dealing with Development

Caiden is 8 1/2 months old, but he's not like other babies his age. He's not even like babies his adjusted age. I still haven't adjusted to adjusted age.. I don't know anyone with a preemie born around his birthday or gestation so gauging where he's supposed to be in his development is anyones guess.

It's hard to explain to other parents how hard it is to raise a preemie. Sure my husband and I are lucky that so far Caiden has no major health problems. A lot of people have it much worse, but this is what we have to live with, this is our everyday, our reality. This is what we have to focus on. It might not seem like a big deal or a huge issue to worry about but it is for us.

When you're pressured since the first moments of your child's life to expect problems and the importance of their development, that's all you can focus on. Sure I could enjoy being able to put my son down in one place and not worry about him getting into something but if that means my child is behind or not developing as fast as he's supposed to, I'm going to worry and do everything in my power to encourage him to improve.

It's not about me, its about him and ensuring he has a wonderful future ahead of him. He might do things slower than most babies but its not for a lack of trying. One day he'll do something new, but the time it takes him to learn that new skill, I'm going to be nervous about why he's not doing it yet.

It's hard to be happy for anyone when their baby learns something Caiden hasn't, I always feel like he should be doing it already and it pulls at my heart. It reminds me how unfair it is to him that he has to struggle to learn these things. It's not his fault he came so early, he should be a normal baby boy. He should be eight weeks and two days younger than he is.

Sure he's come a long way since he was born but there's a long hard road ahead of him still. As his mother I want the best for him, I hope when he's old enough to understand how his life began and the significance of it all that he's as proud of himself as I am. He's learned things normal babies never had to learn and I hope as he grows he'll do all the things he sets his mind to. If he can learn to survive at 3 1/2 pounds he can do anything.

Delilah Rose

I've debated writing this post for a while but I feel like I've reached the point where I'm finally ready to share.

As I've said before I have a genetic clotting disorder that caused the problems responsible for Caiden's premature birth last June. After doing my own research and talking to a specialist, my husband and I were even more sure we didn't want to risk having another child. Neither one of us wanted to go through what we did with Caiden's birth or put another child through that. So we decided no more kids. Caiden will be our one and only.

Then it happened. We were being as careful as we could have been while being unable to take birthcontrol, and we still ended up pregnant at the end of November. We were both scared out of our minds. I still struggle with grief over what happened with Caiden. As uneventful as our NICU stay was, it was the most difficult thing I've ever been through, and all I did was watch my baby grow and learn. This was something else. I knew what the final outcome would be, I knew what we would endure, I knew what our new baby would endure. I didn't want that. I didn't want another helpless child being forced to fight for their life. I didn't want another doomed August due date.

So I researched. I wanted to know if there was a chance I could have a normal pregnancy, if there was any hope that I might have a full term baby. Unfortunately I kept coming up blank. I hadn't been able to find anyone with the form I have that had gone on to have a term baby. It seemed that most were already on their last child, had been scared away from having another because of their experience, or continued to have preemies. The outlook wasn't good.

December 5th we moved from Oklahoma where my husband is from to New Hampshire, where I'm from. We moved for many reasons, one of which having access to better hospitals and doctors. My first appointment with a high risk OB didn't go as I had hoped. She claimed she had never heard of my clotting disorder and that I only had a 20% chance of developing preeclampsia again. I knew she was wrong and she didn't believe me. I went home and thought on it, then I did more research. She wasn't taking into account that my condition causes preeclampsia and that previous pregnancies didn't have an effect on whether or not I developed it again. I was in full on mom mode, while taking care of Caiden, battling morning sickness and trying to help my husband find a new job.

My next appointment with her was approaching. It was supposed to be around Christmas. I was going to have my first ultrasound. On December 23rd I started feeling different. I was still getting sick every morning but it was fading sooner. I wasn't as tired. I started to cramp on one side. December 27th was the same, I felt a little better, but the cramping was getting worse. I went in to my appointment that day. The ultrasound wasn't good. I was supposed to have been nine weeks. My baby was only measuring between five and six. I was given medication to pass the baby if I didn't on my own in the next few days. On December 29th, around 3am I woke up to use the bathroom.

And just like that, it was gone.


We hadn't planned on having another baby, but I love that child as I love my living son. I had felt in my heart that it had been a girl since the day I found out. I had been right about Caiden being a boy, I don't see any reason to doubt that I was wrong this time. That baby changed me. I faced my fears and accepted that I was going to bring another life into the world, that she would be early and we'd face the same obstacles as we had with her brother. Someone so important in my life shouldn't go without a name. Delilah Rose, my daughter. I cried myself back to sleep that night and many nights after.

The moment that test showed positive I was thrown into what felt like a nightmare. I knew the risk of miscarrying was high. We only told the people in our life who needed to know what was going on. I knew if I didn't miscarry, I was having another preemie. I knew the outlook wasn't good. I struggled to cope. But what happened, happened.

I feel guilty sometimes about being so fertile and "unable" to have more children. I wish I didn't have such horrible genes, I would donate every last one of my remaining eggs. I feel bad that while so many are struggling to start a family we get to go through this. But I am extremely grateful that this happened after Caiden was born. I appreciate him so much more knowing we could have easily lost him for so many reasons.

I have a love for tattoos, there is a story behind each one of mine. I got a play on the March of Dimes symbol (a woman holding a baby) tattooed on my left wrist shortly after Caiden was born. This past week I got a new one to commemorate Caiden's early arrival and the life of the little sister he'll never get to meet. On my right forearm I got a tree with 31 blue flowers for how many weeks Caiden was when he was born and nine pink flowers for how far along I was (supposed to be) when I lost Delilah.

Gentle Thanks

Caiden's doing the rolling pin across the living room floor to get to his toys. I'm sitting here watching him and crying like a baby myself. Wednesday he finally mastered rolling from his back to his belly days after turning 8 months old (6 adjusted). He's been doing it constantly ever since. I love it, mainly because it reminds me how far he's come, how far we've come.

March 10th is the second annual Parents of Preemies Day. I was so excited when I found out there was a day for us. You never stop being a preemie parent and I've never met a stronger, more welcoming group of people.

It's a wonderful feeling to know that while my baby can't show it yet, we're appreciated and acknowledged for all we went through with him in his first days, weeks and months of life. While we were one of the lucky ones with an "easy" NICU stay, no ones jealous, and we can all sympathize with everyone else. We've all been there. Each day outside of the NICU is a struggle, not just for our preemie but inside ourselves. Someone once asked me why I wasn't over the whole thing yet, its closing in on a year since Caiden's early arrival. Millions of babies are born premature. One in eight born in the US will be born weeks if not months before they are ready. Until that number is zero, not one of us parents will be over it.

While Caiden and every other preemie was fighting for their life, we as parents were fighting along side them. We are their biggest cheerleader, as a preemie parent you hold an even more important role in their success than any doctor ever could.

Anyone who knows me personally knows for being on the young side, I've overcome many daunting obstacles in my life but nothing compares to this. I have a saying I live by now. It's as simple as it is powerful: Infinitely strong, infinitely brave. I wholeheartedly believe this applies to both ourselves as parents and our preemie(s). Our babies overcome so much just to have a chance at life without even realizing what's going on around them. We have no choice but to sit there next to them, our hearts weeping and for someone, anyone to acknowledge what we as mothers and fathers go through along side our tiny miracles is a stitch on an unfortunately large group of broken hearts.


For more information about Parents of Preemies Day please go to
http://parentsofpreemiesday.org
or find them on Facebook at
facebook.com/parentsofpreemiesday