2011 Ambassador Family

Jaxon is 17 months old and happy

1st time holding Jaxon at 15 days old

Dear March for Babies Family Team Captains,

We are honored to serve as the 2011 Topeka March for Babies Ambassador Family. This is a cause that touches so many families and we are excited to give a voice to families like ours who have been affected by prematurity, birth defects, or the loss of their child.

After over a year of trying to become pregnant, we were very excited to learn we were going to be parents! Things started off well, but at my 24 week check up I was showing signs of pre-eclampsia, a condition that causes dangerously high blood pressure in the mother, and was admitted to the hospital. Two weeks later, my condition worsened and I could no longer stay pregnant. We welcomed Jaxon into our lives 14 weeks too soon, weighing just 1 lb 3.75 ounces and measuring 10.5 inches long. When he was born, he never cried in the delivery room. We were not able to visit him in the NICU for almost 24 hours. Even though my husband had taken pictures of the NICU team helping him breath, I wasn’t prepared for how tiny he really was when I first laid eyes on him.

Jaxon’s time in the NICU was a rollercoaster of emotions. During his 126 day stay, he received numerous blood transfusions, treatment for jaundice, heart surgery, and laser treatment for his vision challenges that were a result of his prematurity. Today, he still receives nutrition through a gastric tube and requires oxygen at night.

I am so grateful that immediately after Jaxon was born, he received surfactant for his lungs. A March of Dimes researcher created this therapy to assist babies’ lungs open up to help them receive oxygen. Surfactant is a synthetic form of what a baby receives in the womb when born full-term. Because of the research of the March of Dimes, Jaxon has a greater chance of one day breathing on his own.

One of the first things the March of Dimes did for my family was to provide us with a care package in my son’s room with many materials to help us understand what we were going through. These tools helped not only us, but also our extended family as well, since his birth was like nothing they had experienced. We treasure the keepsake journal we received, since Jaxon’s experiences weren’t the kind listed in a typical baby book. In it we were able to record unique specials moments such as the day he first opened his eyes.

We’re so grateful to have Jaxon in our life, thanks to the help of the March of Dimes. I look forward to meeting you as the walk gets closer and for you to have the opportunity to meet Jaxon, too.

Thank you so much for your hard work, time, and efforts in walking together for stronger, healthier babies!

Sincerely,
Jason, Dawn & Jaxon

Imagine........

This was written by mothers on the Shareyourstory.org website. It was a thread where they were asked to finish the sentence “Imagine…” in a way that helps others understand the effects of premature birth. Let us know how you would finish the sentence in the comments section.

Imagine........

Imagine.....your baby's birth weight being less than a bag of sugar or a 2 pound free weight or a 32 oz soft drink


Imagine…your granddaughter's tongue the same size as a tic-tac


Imagine...not hearing your child cry until he was a month old


Imagine…trying desperately to stay pregnant for as long as you can, even at risk to your own health


Imagine…giving birth only to be told that your baby has a 40% chance of survival and if she does survive, she will be blind, mentally and physically handicapped and never walk


Imagine…the smile on your face and the tears in your eyes when one year later, that same child RUNS past that same doctor


Imagine...having a hospital feel like home and your house feeling like a place you occasionally visit to sleep


Imagine…not seeing your daughter’s face until she was four weeks old because she was ventilated


Imagine…being able to fit your wedding ring on your child’s arm


Imagine…leaving the hospital empty handed


Imagine…planning your newborn’s funeral


Imagine…having the hospital call a week after the baby’s birth and asking if you’re having fun with your new baby…the new baby that you’ve never even held because he’s in the NICU struggling for life


Imagine…boxing up all of your baby things because it’s too painful to look at them in the nursery
Imagine…signing papers to allow for surgery on a baby who weighs less than a pound and a half


Imagine…the pain of parents all around you losing their babies, grief and guilt mixed with relief that it’s not you


Imagine…holding your baby when she’s two weeks old and realizing that the blanket she’s wrapped in weighs more than she does.


Imagine…feeling the pain of seeing pregnant women


Imagine…having to choose to stop breastfeeding the child you’ve already taken home in favor of his twin sister who is still in the NICU


Imagine…the fear of ever having another child


Imagine......Being afraid of, and afraid for, your child.


Imagine......Not even knowing who's lips, eyes, nose, or chin your child has because you can't see their face for all the tapes, tubes, and eye masks.


Imagine....Your husband knowing your nurses and the NICU routine better than you because he's been there for five days already before you ever even get to see your son.


Imagine...the looks on the faces of your friends and family when you try to talk about the future


Imagine...Being ecstatic when your baby hits 4 pounds, or 3, or 2...


Imagine…knowing your baby is born but the only sound you hear is the door closing as they take her away


Imagine... getting condolences instead of congratulations when your child is born.


Imagine... Not getting to hold your child until he/she is nearly a month old.


Imagine... hearing comment after comment on all the things people didn't think your baby would ever do.


Imagine... that some of the most peaceful times of your day are when you are sitting attached to a breast pump!


Imagine... how quickly the rough past fades away when your child first smiles at you.


Imagine…trying to produce breast milk that your baby desperately needs even though your body isn’t prepared to produce it


Imagine…knowing your baby literally inside and out because of x-rays, heart monitors, brain scans and blood tests


Imagine…dressing your baby for the first time in doll clothes


Imagine…knowing that no matter what happens, your life will never be the same


Imagine....being able to turn this life altering, tragic journey into something that can help many, many other people!