Words

I wasn’t the typical worried first time mother. I feared very little and seldom questioned the decisions I made for Abby. When I thought she was ready for food, I confidently fed her, starting with vegetables before introducing fruits. When Abby had a fever or a cold, I wouldn’t hesitate to administer the proper medications. At 10 months she contracted rotovirus (the next year they approved a vaccine) and we spent a week in the hospital. I never feared losing her, was never skeptical of her strength. There was no doubt I had everything under control. I could handle anything!

She was an extraordinary baby. Most of her milestones were met far ahead of schedule. Abby’s first tooth came just before she turned three months old. She pulled herself up and sat unassisted at 5 months. At ten months she took her first steps and by a year she ran without hesitation. She said Mama, Dada, milk, cup, yes, no, stop, baba, baby, and go at one year old and her baby book proudly boasts this.

Avery’s baby book has the first few pages filled in. You know, Mommy and Daddy’s information and the birth information. After that lays blank pages. I remember very well the day Arick got it for me to work on. Avery was around 2 months old and 2 pounds. I eagerly sat down with it at the table in the motel room we lived out of for 16 weeks, piqued to fill it in. I worked feverishly on those first few pages and then I came to a standstill: baby shower, coming home, first pediatrician visit. Discouraged, I closed it and pulled out the small baby book I’d received from the NICU. “First day off the vent” “First time eating Mommy’s milk,” “Off caffeine”. Ahh,  this was more like it. I completed that book.

Abby’s baby book is full. Her birth announcement from the local newspaper is in there. I wrote inside the back cover the story of how we terrifyingly found out she had a peanut allergy. Her first through fifth birthdays and pictures. The dental and immunization charts. There’s newspaper clippings and artwork.

I hadn’t thought about Avery’s book- the one for “termies” whose mothers won’t be traumatized by it’s questions- until very recently. I saw it when we moved but I placed it back in the box and it’s there…15 feet from me in his room where it can haunt me.

For all of the confidence I had being Abby’s mom, I am double that in terrified micro preemie mom with Avery. Before I fed him food for the first time, I had to approve it by 3 different doctors. If he has a fever- in fact, the ONLY time he’s ever had one- it lands him in the PICU. I find myself regularly wondering if what I am doing is the right thing. Is he breathing strangely? Does he sound congested? Does he feel hot to you? It’s constant, and there is probably nothing anyone can do to change that. We watched him fight for his very existence. But there’s times I’m not confident that I’m the best mother I could be for him.

We knew that his milestones may be few and far between. We prepared ourselves not to expect too much of him. He’s 13 months old and he cannot sit unassisted, crawl or walk. He can’t pick up food and feed himself or hold his own bottle. He can’t yet drink from a cup.

But he can smile. Gosh, can he smile. He can laugh so hard that no sound comes out and he turns red and forgets he has to keep breathing. He can recognize his name, who we are and who his sister is. He will now reach out his arms toward someone to be picked up. If he’s done with you, he’ll let you know.

Yesterday, he said Dada. He SPOKE. This is a big deal for so many reasons. It means that his hearing continues to be good, and that he will have a voice. It means that he, however slowly, is meeting milestones. It means that we have every indication to believe that he will be social and develop language skills. But most of all, it means that I can stop worrying so much. I can let go of a little of my fear and embrace my son’s capabilities. And you know what else it means?

I can get that freaking baby book out.

*just after writing this, I found his first tooth sticking through his gums. Imagine that!*

Predictions

Prior to getting pregnant with Avery, I’d had two losses. My first son was born July 27th, 2006 after it was discovered via ultrasound that he had no heartbeat. He was due on my Dad’s birthday, December 4th. At 21 weeks, I was forced to give birth to a baby we named Damian Alan. I would never hear him cry, never watch him take his first steps. We never found out why he died. Then, I had a miscarriage just a few months before I found out I was pregnant with Avery. My first pregnancy in 7 years, for the few days I knew before I miscarried I allowed myself to be happy and expect my “rainbow baby.” That baby was due, ironically, on his/her angel brother’s 7th birthday- July 27, 2013.

At my first prenatal visit with Avery, my doctor assured me:  I’d simply experienced very bad luck. She’d guess that I’d neither develop preeclampsia again nor have another miscarriage. I held on to those words and the hope that they gave me.

My chances of developing preeclampsia again were right at 50%. With the right care and treatment with low dose aspirin, she didn’t think I’d suffer the same fate. After all, I didn’t get sick with Abby until 28 weeks and even then we stretched and fought for 9 more weeks of baking her. I’d spend weekends in the hospital and on bed rest but ultimately she made it here healthy at 37 weeks. Two weeks I’d spend separated from her after I developed postpartum preeclampsia, a much rarer side effect where delivery does not cure the dangerously high blood pressure.

My doctor was wrong.

My preeclampsia with Avery came on suddenly and without warning. A thief in the night, it took my peace of mind away at just 20 weeks. It robbed my body of my son at just 25 weeks. I felt naive for believing that it wouldn’t happen again.

30%. That was Avery’s chance of survival at birth. Sure, he got sicker. We watched his heart stop once. He quit breathing countless times. Even when he was bigger, 3 pounds or so and we could hold and feed him- he’d stop breathing. In our arms. He grew tired, weak. There was a night or two his chances probably dropped significantly lower than that 30. In fact, I know they did. His doctors were wrong.

Once he decided I had enough gray hair, my son amazed everyone. He grew strong and defiant. Upon release from the NICU we were told we’d be referred to Early Childhood Intervention to be evaluated for therapy services but there was no chance he’d qualify. He looked great, he didn’t seem to have any significant damage. They predicted no delays. They, too, were wrong.

I found myself unexpectedly pregnant again in June. From day one I was having panic attacks and heart palpitations. How would we endure months in the NICU again? How could we care for Avery, who’d be just 17 months old when his sibling came, IF we went full term? And Abby…I couldn’t be separated from her again. Again I was told: this time your baby has the same father and your body should “recognize” this. Preeclampsia shouldn’t be a worry. Your late miscarriage was a fluke. This baby will be fine. I let my guard down and again there was a motionless baby on the screen. My doctor was wrong, again.

Predictions are funny things. Sometimes they’re just numbers or odds placed on situations to make us feel better. To soothe ourselves. Sometimes they’re based in fact, on research or statistics. But they’re still crap. Sometimes we need to hear the truth and not be placated, but our nature as humans prevents it. The truth is that no one knows.

My less than 30% is sitting in my lap right now watching Mikey Mouse Clubhouse and jumping when music plays. I got preeclampsia again, and it tried to kill us both. He’s delayed, significantly. I lost another baby. Should I have placed so much weight on predictions? If I never heard the number “30%” when Avery was born, would I have slept better at night, cried less or worried less? Probably not. If they had said “75%” would it have made a difference? Would we have truly believed in our hearts that the chance of him coming home with us was greater? Not at all. We’d have still been the emotional wrecks that the NICU left us.

Avery’s physical therapist says we aren’t predicting anything. He’s going to do what he’s going to do precisely when he does it. Does she think he will crawl? Absolutely. Do I? No doubt about it. But we’re not going to label it and give it a number. We won’t say “within six months” and have us all feel like failures if that doesn’t occur.

Who knows what is going to happen? There’s no way that my doctor could have looked at me and said: “You’re going to get preeclampsia again and this baby will come at 25 weeks. He’ll spend 16 weeks in the NICU, endure two surgeries and go home on oxygen.” If she could have, would it have changed anything? No.

I’ll never again put my faith in a number or a statistic that has nothing to do with me. Especially when it comes to my son. They can’t predict anything in regards to him because he does things the Avery way. And that’s just the way it should be.

I predict that he’ll

always

be perfect.
I know that because my faith is in God.
And in Avery.

image

My survivors, the first time they met outside of the NICU.

I Did It!

I finally got around to creating the blog so many people told me I should write!

Writing has always been therapeutic to me.  There’s just something releasing to me about getting it out, putting it down. I was the student whose eyes got wide with excitement when we received writing assignments. Several college professors frowned and shook their heads when I confidently announced that I was a nursing, and then social work, major. There’s still a part of me that longs to be a high school English teacher. I’ve gone to college, gotten a degree. Next it is Arick’s turn. Maybe then I’ll go back.

I feel like my experiences have provided me with something to say, even if no one listens. And maybe sometimes I just need to get a thought, fear or emotion out. That is what this is for.

Much of this will probably revolve around my children. I have two of the biggest blessings God’s ever given. Together my two living children and I fought and won against preeclampsia.

I’ll probably write a lot about prematurity, developmental delays and other aspects of parenting a former micro preemie who is medically complex. These issues take up the biggest part of my life right now, and will for a very long time.

Mostly, I hope to write about and share the accomplishments of MY greatest accomplishments and the man they call Daddy.

I’m going to try to keep up with this. Whether I’m laughin, crying or throwing a fit…

Steph