Monday, February 23, 2009

Why We March for Babies

We are honored to be our area's Ambassador Family for the March of Dimes. This is the speech I gave at our kick off yesterday. I was able to make it through most of it without crying...
We March so someday every baby will have 40 weeks.

I’d like to take a few minutes to tell you our story and why the March of Dimes is so important to our family.

In August of 2004, I was pregnant, almost 28 weeks. It had been a normal pregnancy without many issues really. I didn’t even get morning sickness. Like any first time parents, Jeff and I were pretty excited. We were painting the nursery, well, Jeff was, and getting things ready but we weren’t in a hurry. I mean I was due November 13th…there was no rush, right?!

That all changed though on August 20th. I had been running around doing errands all day. I was tired and decided to lie down. When I got up, I realized I had some bleeding. The baby was moving around, so I wasn’t really worried. We’d had a something like this happen before and were told not to worry, but I decided to call the doctor just to let them know. They didn’t think it was anything but said I should come in to get checked anyway. What they found changed our lives quickly.

Through an ultrasound, the doctor discovered I had a condition called Vasa Previa. Our baby’s umbilical cord was attached to my cervix and bag of waters. Basically, we were told if my water broke, our baby would bleed to death even before an emergency C-section could be performed. They flew me to Iowa City to confirm the condition. I was given two rounds of steroids to help mature the baby’s lungs. I was sent home on bed rest and told that the baby would need to be delivered at 34 or 35 weeks. We were told that our goal was to get to at least 32 weeks the beginning of October. Even better would be if we could make it to 34 weeks. I was just turning 28 weeks at the time, and scared.

A few days later, I ended up in the hospital again under constant monitoring. We were walking the torturous line between wanting our child to have more time in utero and my water breaking, risking his life. We knew that every day we could wait before the baby was born could give him precious time to grown and develop. While I was in Iowa City, they showed us the Neonatal Intensive Care Unit, so we’d know what to expect…but nothing really prepares you.

On September 12th, just 3 weeks after being diagnosed, I had more bleeding. It was quickly determined that the baby needed to come out now. I was terrified. I was only 30 weeks and one day! Jeff got there quickly and at 10:51 am, Grant Spencer was born! I got to see him for a moment just a glance really before they whisked him away to work on him. I heard him cry faintly, just one time. He was 4lbs 2oz and 17 inches long.

Jeff went with him to the NICU. I wanted someone to be with him. A few hours later, they took me to see him. The room was kept dim so that the lights didn’t over stimulate his nervous system. I couldn’t hold him. He was in an isolette. He was on a respirator and had several IV’s. I could hardly see his face through the tape holding the tubes in place. So I brushed the top of his head once, told him "Happy Birthday" and then had to leave.

Later that night, his doctor came to my room. He asked everyone to leave except Jeff. My heart sank, this wasn’t going to be good. He told us they had found evidence of hydrocephalus, water on the brain. That Grant would likely have to have surgery to put a shunt in to drain fluid to prevent brain damage. We were just, quiet. He told us that they’d repeat the test in a few days and then send him to Iowa City where they were better equipped to handle the situation.

The next morning, the nurses came in to tell me that there was a change in plans. Grant was going to Iowa City…NOW. Within an hour or so, it was all arranged. They quickly got me up and into a wheelchair. Jeff took me up to the NICU. They’d already loaded Grant’s isolette onto the stretcher. The Medics asked us if we had a picture, so we tucked a wallet size wedding photo of Jeff and I in next to him. That photo stayed with him the entire time he was in the NICU. They wheeled us into the elevator with him and then the medics asked Jeff to help them put Grant onto the helicopter. He joined me while we watched our son lift off, the wind rushing over our faces. It was then that I realized what time it was. At exactly 24 hours old, our son was flying away from us.

I was transferred to Iowa City so that I could be near him. When I arrived, we were greeted with the wonderful news that there was NO hydrocephalus. But accompanying that news were requests for blood transfusions, surfactant to help his lungs inflate, and information on how they were treating him for sepsis. It was going to be a long road ahead.

Grant suffered from Respiratory Distress Syndrome. His lungs simply weren’t mature enough yet to breathe on his own. He needed help breathing until they were. Grant was also hooked up to many machines. I had thought that I was prepared for all of this, but honestly, nothing can prepare you for seeing such a tiny person in the midst of all of that. I was afraid to touch him…and couldn’t hold him… not yet. He was so fragile, and tiny, and sweet. His fingers barely made it around Jeff’s thumb.

I was discharged from the hospital, but Grant was nowhere near ready. Going home without him was hard. Walking in the door of your house after giving birth should be joyous. But I cried when we pulled into the driveway. My son was an hour away. The nursery was empty. It wasn’t supposed to be that way.

When he was a week old, we were finally able to hold him. I’d SO been looking forward to this moment, see most mothers get to hold their newborns soon after they are born. Cuddle them; look at their beautiful faces, count fingers and toes. Parents of preemies don’t get to do that.
Instead, we leave the hospital without even being able to hold our miracles in our arms.

The morning of the big day, the nurse untangled all of Grant’s wires and gently placed him into my arms. He was so light, so tiny. She told me he could only be held for and hour at the most. Any more than that could over stimulate him and cause breathing issues. Since it was my birthday, Jeff let me have most of his time holding Grant. It was the best gift I’ve ever gotten.

Grant had his share of setbacks. The afternoon we first held him, he had several “Brady episodes”, forgetting to breathe. I heard the monitors go off and watched my son's lips turn blue as he struggled to breath. I could only watch as the nurses helped him. I was his mother, and I couldn't help.

He couldn’t handle breast milk for several weeks so he had to be fed through and IV. It took him a long time to learn to suck and digest food. Eventually, he did though. He began to put on weight.

Grant spent 42 days in the NICU. He came home 2 days before our first wedding anniversary. On our Anniversary, Jeff and I held him while we danced together to “Come What May”, our wedding song and our first dance as a family.Since then, Grant has continued to grown and thrives. His first year was full of ups and downs.

He developed asthma and later caught RSV, resulting in a hospital stay. We still need to watch him carefully as simple colds can quickly turn more serious. But we are also very lucky. Vasa Previa often goes undiagnosed until it's too late. Preemies born before 32 weeks have a high rate of bleeding in the brain and serious respiratory problems. Grant escaped most of that.

By the time he was 2, he was completely caught up in all his milestones. He’s 4 ½ now and talks our ears off. He amazes us every day with his ability to make us smile.

We volunteer for the March of Dimes because of the important work they do. The steroids to help strengthen Grant’s lungs and the Surfactant he received to help him breathe are a direct result of the March of Dime’s work. Without these advancements, our outcome could have been very different. We march now to help other babies.

Please support us in our March this year. The work the March of Dimes does is important to all babies.

My personal Web page address for donations is...http://www.marchforbabies.org/grantsgang

13 comments:

Princess Jo said...

Wow. Thanks for sharing your story. it was extremely moving, and I am just so glad that your baby boy survived and thrived so well. Congratulations.

Jo

Kristin said...

Wow...what a story. Thank you for sharing and reminding us how important March of Dimes is. Thank you for your work on their behalf.

~ICLW

Soralis said...

What an amazing and scary story. So glad that your little guy is thriving. Take care
ICLW

Marie said...

Thank you for Sharing your miracle with us. I can't imagine the fear and pain and joy the last 4 1/2 years have brought you.

Seriously? - Erin said...

That is an intense story. I am glad in the end it all turned out well.

Best of luck!

ICLW.

Beautiful Mess said...

What an amazing miraculous little guy you have there! Thank you for sharing your story.
*ICLW*

Michelle said...

Thank you for sharing your amazing story and I am so happy to hear your boy is thriving now.

Cassandra said...

I was bracing for the worst at the end, but so glad that everything turned out well. I didn't make the connection that your little photographer is the same biscuit!

Jo said...

How on earth you made it through that speech without sobbing I will never know. I am bawling just reading it.

Thank you for sharing your story, and for all the work that you do.

Carrie said...

I loved reading your moving and heart wrenching story. I am so glad your little guy is doing well now! I am also dealing with secondary infertility, after the birth of my daughter, I've had three m/c's and countless other setbacks. It is wonderful to find others in the same struggle. Stop by my blog if you have a sec. :) I can't wait to keep reading your story.

nh said...

Wow - what an emotional story, thank you for sharing. I am so glad that he is doing well now.

ICLW

Kelly D said...

I'm impressed that you could make it though this moving speech without crying. I gave a 2 minute speech for the MOD the other day and cried a handful of times.

Glad to hear he is doing well.

nutmeg96 said...

Thanks for your comment on my blog. I am all teary reading your story. I know we have a long road ahead of us but it is so good to read your success story. We hope to get more involved in the March of Dimes once everything settles down.