Tuesday, November 17, 2009

Prematurity Awareness Day: Our Story

Today is Prematurity Awareness Day. If you're reading this blog, then you are probably already aware of the issue of prematurity and what it means for both preemies and their families. The March of Dimes is asking bloggers to blog about how prematurity has affected our lives, so below are some of my rambling thoughts on how it has impacted Marino's health. I hope it makes sense...I am sick (caught Marino's stomach virus) and very emotional about this issue today.

I was lucky enough to have a healthy pregnancy until the day Marino was born. I loved being pregnant - I felt better pregnant than I normally do. I loved it! I wasn't lactose intolerant for the first time in a decade...oh, the milkshakes I drank! The cheese I ate! I was having the time of my life...blissfully ignorant of what was in store for us.

I knew nothing about prematurity before Marino came into the world...the thought of having a premature baby never occurred to me. I swore he was going to be born late. I didn't know of anyone who had given birth to a baby before 34 weeks (34 weeks is the point at which antibodies are passed from mother to baby, so 34 weekers generally have stronger immune systems than younger preemies). I imagine I thought, as many people do, that having the issues of prematurity end once the baby leaves the NICU.

Marino was born very suddenly. My HELLP Syndrome progressed quickly. I got to the hospital maybe 2 hours after my first symptom, Marino was born about an hour later by emergency c-section. I wish I could tell you about everything Marino went through his first few weeks of life, but the truth is, I didn't now know most of what was going on. While I can recite all the explicit details of Marino's medical history over the past 15 months, that first month I was in a morphine and illness induced haze. But I do know that he could not breathe on his own at birth and was placed on a ventilator. He had jaundice and a low white blood cell count (this was because of my condition). He could not maintain his body temperature. He could not consume formula orally. He could not defecate on his own without the help of suppositories (initially at least). He was small, even for his gestational age. His skin wrinkled on his body because he had almost no body fat. He was covered in lanugo (fine hair all of his body). In short, he was not ready to be born.

Marino: July 3, 2008

In the NICU...he looks like he's saying a prayer here.

There is a sense of loss that parents of premature babies go through that is difficult for other people to understand. Yes, we are blessed to have babies that are alive. But we grieve for the loss of the expected pregnancy/birth process. I missed our baby showers. I missed getting to the point in pregnancy where you feel hiccups, or can see hands and feet moving across your belly. I never got "that pregnant." I never got so far along in my pregnancy that I didn't want to be pregnant anymore. And most of all, I grieve for the loss of a healthy birth...one that involves being handed a crying baby to hold and kiss. I feel physical pain thinking about what it would be like to have held Marino in the first minutes after his birth, to have said "Welcome to the world, Marino." What would it have been like to have been handed a 7lb Marino at birth instead of seeing a 3lb Marino in an incubator 3 days after his birth?

Even after Marino came home, the effects of his prematurity had a dramatic impact on his health. 10 days after his release from the NICU he started grunting. No fever, no other symptoms, just a weird grunting with each breath. I mentioned it to my mom and she held him for a while...then said maybe we should call our pediatrician. We called and she listened over the phone. "Um, I think you should take him to the ER...just to be safe she said." (God bless her). We arrived at the ER...by this time, he was basically non-responsive. His penis was blue (low oxygen). He didn't want to eat. But still, no temperature, no coughing, no obvious signs of illness. "Is this your first baby?" the condensending ER doctor asked me, "they just do things like this." Any mom knows when something is WRONG! WRONG! WRONG! with their baby. And something was wrong with mine. Our pediatrician called the ER to follow up. They said they were discharging us. She asked me if I was ok with it and I said no way. She asked for a second opinion from a NICU doctor (again, God bless her). The NICU doctor took one look at him an admitted us. They did a spinal tap. He didn't move. He was essentially unconscious for the next few days.
Marino in the Pediatric Unit
August, 2008

It took a while to diagnosis the problem. They initally thought it was NEC (since he was "guarding" his belly when they tried to touch it). They started prepping for surgery, called in the surgeon, and then discovered his bowel was fine. They moved us from the Pediatric Unit to the Pediatric ICU. They found a bacteria. It ended up being Group B Strep, which is usually passed from mother to baby, but wasn't in our case, since a) I did not have him vaginally and b) I was on antibiotics before I even saw him for the first time and was at the time (and would be for another 5 months). They told us he got it "from the community." It developed into sepsis, which manifested in his belly. Within 48 hours, the lab came back that he had bacterial meningitis. We were terrified. We were told he needed 14 days of IV antibiotics and we moved into the Pediatric Unit.

Marino's weakened immunity to these illnesses is a direct result of his prematurity. They also told us at the time that he had a Level 1 IVH (bleed on the brain), another common issue caused by prematurity. That coupled with the meningitis could have been a serious issue. It is only by the grace of God that he had no lasting effects to his brain, sight, hearing, etc.

When we left the hospital the second time, we were told to keep him away from other people as much as possible. We didn't take him out of the house (except for walks outside) until he was 4.5 months old, and then only sparingly until RSV season ended in April. We didn't have friends and family over often. Sometimes it felt a bit like house arrest. Some people thought we were overreacting. Our primary focus was keeping Marino healthy. It felt, at times, like it was us against the world, a battle for Marino's health. And even with the events of the past few weeks, learning he has asthma (which he may have had were he born term, but it is likely this was caused, in part, by having respiratory distress at birth), it still feels like a battle. Just seeing the words "respiratory distress" on our discharge paperwork on October 31st really brought things full circle. We are still battling the issues of prematurity 16 months later. It affects Evan and I as parents more than you can imagine.

Even after all that, I can say that we have been so blessed when it comes to Marino's health. So many preemies have much more difficult battles, even after the NICU. The list of problems that can be caused be prematurity is too large to list. Every organ, every muscle, every part of a baby's growth and development can be adversely affected by being born too soon.

The silver lining of this cloud has been the wonderful friends we've made, in the hospital, online and in real life. I don't know what I would have done without their support sometimes. When Marino was in the hospital last month, I could say to my preemie friends "Marino's desat machine is making me want to rip all my hair out...its giving me flashbacks" and no one had to ask what I meant by that. They all get it. And my IRL friends: Audra (who is the kindest person I know and only had 1 month of preemie mom life experience on me but was like a mentor to me), Laura, Katie, Megan, Karen, Martha and Carol (who just sent Marino an adorable holiday outfit, thank you) - I have a special place in my heart for you guys, as I do for the other preemie moms in my life I haven't met in person yet: Kelly, Tricia, Shana and Ivory and all my other kind hearted friends. I'm not sure what I would have done without you all sometimes.
I took a class a couple years ago called "New Issues in Community" where we discussed what makes a community. One of the most important elements was a shared history...and my preemie moms and I definately have a unique shared history. Ours is a history of highs, lows and not taking anything for granted. Today, I'm thankful for my new friends and the miracle that is my premature baby, Marino.

For information how you can help, please visit the March of Dimes at: http://www.marchofdimes.com/howtohelp/howtohelp.asp

or call your local NICU to see what you can donate or provide to families struggling to care for their premature infant.


  1. I'm a wreck from reading this, I am literally doing the "ugly cry" HELLP syndrome is nuts...I had to laugh about the lactose intolerance, I was the same way and drank way too much chocolate milk.

    Marino is amazing, I can tell with each picture how much zest for life he has. Maybe someday we will meet and Marino and Lily will become friends. I hate that we had to go through this, but feel blessed that I have met you! XOXO Shana & Lily

  2. I am so emotional today. I can totally relate to the HELLP. Thanks for taking the time to write and share your story.

    You were the first person I saw on bump that had HELLP...I remember thinking- ok so I'm not the ONLY one who got this weird rare syndrome.

    Marino is a heartbreaker!

  3. GAH! Bawling again.
    I'm proud to be part of your community. Can we gate it off and allow no more members? We have plenty.
    If only we could end prematurity..