Thoughts From A Pregnant Preemie

Just to provide a little background, I am 26 years old, and I was born at 29 weeks gestation weighing 3lb 13oz. I was in the NICU for nearly 100 days before being brought home. My mother also had a second daughter two years after me, who was born too early to survive.

From the day I found out I was pregnant, I felt my joy and excitement tempered by worry. My mother had preeclampsia and recent studies have suggested a hereditary component which might put me at a higher risk of delivering my child prematurely.

I feel like most people don’t understand the challenges that I have faced as a preemie, since it has left no visible scars on me. As a result, no one seems to understand why I am terrified that my son will make an early entrance “because look at you, you’re just fine.” Either they don’t understand what kind of issues preemies can suffer from and think they’ll be just like a full term baby only smaller, or they think I’m being paranoid and shouldn’t be borrowing trouble.

I’ve never found that hiding my head in the sand solved any problems, and I want to be as prepared as possible in case my son does need to make an appearance early. It’s true that there have been tremendous strides in the care of premature babies since I was born, but the media tends to gloss over the real facts like survival rates and disabilities, while focusing on the ever-smaller miracle babies who pull through. I wanted to make sure I understood all the hard facts so that if there were any decisions to be made, they wouldn’t be based on emotion or popular misconception.

It really frustrates me though when people simply don’t understand the reality of having (or being) a preemie. They see the success stories, or are assured by doctors that preemies catch up by age two. No one seems to pay any attention to the ones that don’t. It makes me so angry when I see women in their third trimesters (or even second trimesters!) talking about how they can’t wait for the baby to be out because they are so uncomfortable, or begging their doctors for an early induction. At least in my mind, my baby’s health is far more important than any amount of pregnancy discomfort that I will suffer; I will gladly endure whatever’s necessary to keep my son inside me until it is safe for him to come out. Will it be difficult? I am sure it will be. Pregnancy is no picnic for most women, but who ever said that being a parent was easy? It’s all about making the best decisions you can for your child, and that means putting his/her health ahead of your comfort.

On a pregnancy message board I frequent, they have a tradition of celebrating “V-day” when they reach 24 weeks, or viability day. It makes me so frustrated to read those posts because most of the women seem to feel that once they’ve reached that point, they are safe. Their children will be fine, just a little small. I wish there was some way to show them the reality of a 24 week preemie, the heartache of the NICU roller coaster, and the possibility that their child still may not survive or be severely disabled. It boggles my mind that people can truly believe that a fetus just barely halfway through a normal pregnancy would be just fine if born.

Am I being negative? I think that I’m being a realist. Some children who are born as early as 24 weeks may suffer very few visible effects of prematurity, or they may not appear until adulthood. I can testify to that. But the majority of babies born this early in pregnancy will have lasting issues and many will die; I don’t see that as a milestone worth celebrating.

I’m currently in my 26^th week of pregnancy, and aside from having a few scary moments in the first trimester when we thought we were losing the baby, I’ve had a fairly normal pregnancy so far. Due to my family history, I’m being carefully monitored for any warning signs. Every time I feel my son kick or move inside me, it’s the most wonderful feeling in the world. I would do anything to keep this little one safe and healthy, and in the womb until he is fully developed and ready to be born.

I just wish there was some way to help more people understand what a serious issue prematurity is. Kudos to Stacy for helping to show people that there is another side to prematurity other than the warm fuzzy one that the media chooses to publicize.

When I was a little girl, my mother always told me not to wish my life away when I said I wanted to grow up faster or be older. Now that I am pregnant with my son, that comment rings even truer for me.

Susan

**Note from Stacy... Ok, before you click on "publish your comment" please keep in mind that the person who was brave enough to share her thoughts with all of you is PREGNANT, in a high risk pregnancy no less. Do NOT sling drama her way. If there is a topic within her post that you would like to discuss further, please post your request in the comments or email me and I will gladly make an entire post out of the topic.**

Don't Tell Her That!

Hubby and I have never hidden Paige's birth history from her. During doc visits, she was always present when they were taking her history. She was always present during consults following tests and procedures.

Over the years we have caught criticism for our decision to include her in HER care. We have been told to "treat her like a full term child and she will grow to be normal."

Paige started to notice her "differences" when she was very young, around age 3. She would try to do things that the other kids were doing and get upset with herself. It was quite sad. We explained to her that not everyone is good at all things in life. That never went over well. We tried to point out the ways that she excelled. That didn't go over well with her either.

Then one day I took her to the mall to run around with her friends, while us moms gabbed on the sidelines. I saw her trying to run and keep up with them, to no avail. She tried to get her friends to sit down and play in one spot with her. They wanted to run. She tried again to keep up with them but finally started to whimper. By the time she reached me, she was crying. She asked, "Mommy, how come my legs don't work like the other kids?" It broke my heart to see her struggle. It was time. Although her CP is barely noticeable in most situations, SHE knew it was there. A nice Brady Bunch speech was no longer going to work for her. I pulled her aside and told her that the muscles in her legs were affected by the CP and they work a little slower. She was happy with that answer. She was still upset that she couldn't keep up, but she now knew why.

I was comfortable with my parenting and quite happy to see her being content, instead of trying to push herself to do something that wasn't going to work, no matter how much she tried.

Then I hear, "Don't tell her that!" from someone in our group. "She doesn't need to know that she has CP." Umm... she already knows that something doesn't feel right... why not have a name for it? After all, it is HER body.

During a medical appointment, a nurse once told me that I shouldn't have let Paige hear me say that she has epilepsy. What?

We have been told that Paige shouldn't hear her birth history because it is in the past. My response, "when her long term issues relating to prematurity go away, I'll stop giving her birth history to docs."

Over the years we have had others wince when they hear Paige talking about her own issues. Because it's painful for adults to hear, they assume that she should not know the truth. Well, she lives the truth every day.

She is now almost 9 years old. She has never given up trying to do something that her body is resisting. She still runs with her peers, tries to do gymnastics with them, and at times is a bigger daredevil than others her age. But the difference is that now she understands why her body is resisting. She no longer feels inferior but instead understands how her body works.

As far as her birth history... Paige now does a beautiful job advocating for herself when dealing with doctors. She can state her history and her current health conditions in such a clear concise manner that it allows doctors to give her the best care possible and fosters independence. After all, one day she will be on her own and need to take care of herself.

I have had many conversations with older preemies who have full knowledge of their birth history and also their medical/mental health history growing up. Now adults, they are able to better understand their struggles and are wonderful advocates for themselves. I have also had conversations with adult preemies who knew nothing about their birth history (beyond that they were born early). They struggled as adults to find the answers to why they were feeling different than their peers. And, during my "break" I have been reading the various comments between Medrecgal and others. It was these exchanges that gave me the idea for this post. Thank you for your openness and honesty Medrecgal!!