Tuesday, November 17, 2009

I Now Have a Cause

Ever since the premature birth of our daughter Ella Grace I have joined the ranks of a club that no one ever wants to join. Both Shazam and I are card carrying members of the preemie mom club. We now have a cause and have charity walks to do because it is only hard work, money and lots of research that we will prevent another baby from the hard path our sweet baby Ella has had to walk and will continue to travel.

Today is the March of Dimes Prematurity awareness day and they have asked families that have been affected by Preterm birth to tell their story in the hope that my cause will become your cause even just for a minute.

Little Ella came into this world after a few frantic day after a rather uneventful pregnancy. Other than pretty serious morning sickness and fatigue my pregnancy was the picture of normal. My ob visits were quick and I didn't have any thought to the possibility of our baby was coming early. This all changed quickly on the evening of July 8th. School was out for the year but I was still doing my part time nanny job in the afternoon. As usual I picked the girls up from camp, played some games, and cooked dinner. I was feeling tired and my feet were swollen but it was July and I was 7 months pregnant. It would have been odd if I hadn't been feeling this way. I went home and made dinner for Shazam and I and was feeling fine at about 7 pm. As the evening progressed I started feeling sick to my stomach and it progressed over the next few hours to me vomiting. I knew something was wrong so I asked Shazam to take me to the hospital. It went downhill fast as soon as I arrived at the hospital. My blood pressure was off the charts and the first thing the doctor told us was that we would be having our baby in the next 3 days. I had developed pre-eclampsia and hellp syndrome. The hope was that I could last for 3 days so that the baby's lungs could be helped by 2 doses of steroids. I lasted about 30 hours until I was too sick to stay pregnant any more as my liver and kidneys began to shut down. It was a frightening time but really didn't comprehend how sick I was and how scary the road we were about to walk down was going to be.

Ella entered the world by emergency c-section at 1:50 pm on July 10, 2009. She weighed in at 2 pounds 5 ounces and was 14 inches long. She was tiny. She should have been about a pound heavier and an inch and a half longer but the pre-eclampsia had causes her placenta not to work as well as it should have and Ella's growth suffered. She scored a 2 and a 7 on her apgar scores but she was screaming her head off in the delivery room. After a quick kiss in the delivery room it would be hours before we would see Ella again in the NICU and 69 long days before we were able to bring our little bundle of joy home.

The NICU experience is surreal and scary. It is one of the saddest places you can ever be but oddly it is filled with joy. Ella was poked with needles, had tubes down her mouth and nose, she was treated for a heart problem, received a blood transfusion, was tube fed, and suffered from episodes where her heart and respiratory rates dropped dangerously low. She was sick and it was hard but Ella had a pretty easy road of it. She was never the smallest or the sickest in the nursery but it was still hell to watch our baby suffer quite frankly it was hard to watch all the babies suffer. The fact that Ella made it out of the NICU without any major setbacks or surgeries is amazing and really we were lucky. Lucky that my daughter was born in a time after some of the most important advances in neonatology have been made. Our journey would have been much different if it were not for the development of surfactant to help her lungs, knowledge about fighting NEC a devastating and often fatal digestive infection, and the development of medicine that closed the hole in her heart without surgery. All of these advancements that literally saved Ella's life came from research funded by the March of Dimes.

We made it through and out of the NICU but here is the thing Ella is still a preemie and we are preemie moms. I think that is one of the hardest part of this journey. So many people think that because she is getting so big (10lb 7.5 oz last week!) that she is no longer a preemie. The truth is she will always be a preemie and until age 2 or more she will be dealing with the adverse effects of being premature. It makes me so sad that instead of just being able to enjoy the ride that is parenthood we are constantly jumping over road blocks and looking ahead anxiously for what is to come.

My hope is that fewer parents will have to join be on this journey and that the ones who do have an easier and shorter road because I helped clear the road for them. While in the NICU Ella participated in several research studies which hopefully will help future preemies. It wasn't much but it was the most we could do. Now that we are home I hope that we can help raise money to fund these research projects and fight for these special little babies and their families.

I have never laughed, cried or loved as hard as I have in the last four months in my entire life. I treasure every minute I have with my family. My Ella is a fighter. If you are able to I would love it if you could fight for her too!

To donate in her name click here!

4 comments:

BabyKevinMom said...

I like how you worded the following:

"So many people think that because she is getting so big (10lb 7.5 oz last week!) that she is no longer a preemie. The truth is she will always be a preemie and until age 2 or more she will be dealing with the adverse effects of being premature. It makes me so sad that instead of just being able to enjoy the ride that is parenthood we are constantly jumping over road blocks and looking ahead anxiously for what is to come"

I can totally relate! Thanks for sharing.

Christi said...

I looked around the room yesterday at the Synagis clinic, my son was for sure the biggest one there at that time. I can relate, yes, he is getting big, but still a preemie inside.

Elise said...

What a beatifully touching post. Thank you so much for sharing your story with such candor and eloquence.

Snickollet said...

Thank you for sharing this. I'm sure it's not easy to write about.

XOXOXO