Tuesday, November 17, 2009

Awareness

November is Prematurity Awareness month. November 17 is Prematurity Awareness Day.



The March of Dimes has asked that those of us who blog to write about how prematurity has affected us in honor of the day. As the MoD and their research is responsible in large part for Robbie's life, I could hardly say no.

To many people, a preemie is just a small baby. During our 96 days in the NICU, if I had a dollar for every person who asked "So when he's four pounds he can come home, right?" we'd be, well, more financially sound. Unfortunately it isn't so simple. Size is the least of the problems that face a preemie, particularly those as small and early as Robbie.

Robbie was born 14 weeks early. Those 14 weeks cheated him of time for his brain, gut, eyes and lungs to develop. When they pulled him from me, he didn't cry. His APGAR score was 3. We were incredibly blessed that he roused reasonably easily and "pinked up" meaning that oxygen was finally nourishing his body.

When they brought him to me for a brief kiss before whisking him to the NICU, he could only open one eye. I wouldn’t see Robbie again for many hours. Robbie's NICU friend Gavin, born 2 days earlier than Robbie, still had fused eyelids when he was born. He wouldn't see his mom for another few days because his eyes literally weren't ready to do so yet.

We wouldn't hold our children for days, sometimes weeks. Robbie was 5 days old before I was able to hold him. And it took two highly skilled nurses to situate him on my chest. It was the happiest day of my life. I was able to hold my son for nearly an hour, just sitting still, finally able to feel his skin on mine.

The next day his father would hold him for the first time. After spending 30 minutes on his dad's chest, Robbie started "acting funny." He was so tiny that he couldn't maintain his temperature and became ill with a condition called "cold stress." Something as simple as holding our own child could put him in peril. Fortunately the quick thinking and attention of a veteran nurse saved the situation from becoming dire.


Robbie's brain was too immature to remember to breathe all the time, his lungs too underdeveloped to process oxygen properly. His muscles were too weak to take a breath deep enough to breathe oxygen in and carbon dioxide out. He was intubated – a breathing tube threaded into his esophagus & to his lungs, delivering life saving breaths. He was hooked up to leads; three on his chest to track his respirations & heart rate. They were moved daily to try to keep his skin from breaking down under them. It was too thin and fragile to handle for long the sticky gel that kept them attached. He was given an IV in his umbilical stump. He had another lead wrapped around his foot to measure his oxygen saturation.

The oxygen saturation was the number we would come to love and hate. For many weeks, it would cycle sometimes twice per minute, alarming if it got too high and again when it got too low. We NICU parents would stare at that number all day long. In the "real world" an oxygen saturation below 95 is cause for concern. In a neonate, they'll accept 80. Many, many times it was much lower than that. We prayed his brain would be able to overcome it. His brain and his body wasn't mature enough to care for itself yet.

This dance was normal in the NICU. When we asked how Robbie was doing, we heard "normal preemie stuff." No matter how abnormal it felt, it's what every preemie experienced.

There were other things, too, of course. Infections in the lungs from the tube shoved into them, blood in the stool because his intestines weren't prepared to work yet, central lines to administer drugs & nutrition before his stomach could handle actual food.

Suffice it to say that the NICU was no picnic for a baby meant to still be floating in the dark and quiet of the womb.

Prematurity stole more than just a normal life for Robbie. It stole much from us as parents, from me as a mother. In the hours before Robbie was born, I wrote as much as I could. I was heavily drugged and afraid I wouldn’t remember things clearly, so I wrote blindly, unable to even focus my eyes on a screen. I wrote about feeling cheated. We didn't yet know Robbie was a boy and had taken to calling him Tater in honor of a particularly delicious baked potato I got from the hospital.



I feel cheated.
Yes, cheated. I haven't even made the 3rd trimester yet. I was just getting to the point of being able to identify what parts of what were jabbing me where. Just learning my Tater's habits. Tater likes icing. Prefers white butter cream. Tater is unimpressed by apple juice and won't kick for that. Tater is not a morning baby. Tater doesn't like it when mommy cries. What else would I have known in the next 3 months?

I will be cheated of the announcement; "It's a _______."

I am in a labor and delivery room, and the table where most babies are set for their welcome to the world sits in the corner taunting me. I suggested putting the flowers that came today on it. It may as well be used for something.

I am cheated of looking pregnant. The maternity clothes I finally ordered will be returned unopened.
Oddly enough, I don't feel the jinx guilt I thought I would. I think of the outfit that David brought home from Vegas and instead of thinking that we jinxed ourselves, I think of the relief I feel that at least we had bought the baby SOMETHING.

I had a melt down yesterday because we have nothing for the baby, but quickly melted a different direction because it doesn't matter that we have nothing for the baby because the baby isn't coming home for months anyway.


I am cheated of a baby laying on my chest, still covered in grossness and full of beauty.

I am cheated at true breast feeding, though I will pump for the NICU. They encourage it and I'm glad to serve some purpose.

I have been cheated of stupid things like my child birth class, and breast feeding class and hospital tour. All of which would have been wasted since I will never labor, will pump and won’t even deliver at the hospital we had planned on anyway.

I'm cheated of packing a hospital bag. Of arranging care for my animals. Of taking a shower before I went to the hospital. Of being able to lay on my side (the fetal monitor doesn't like that).

I'm cheated of holding my husband's hand as I push our baby out. Of seeing the look on his face when I finally make him a father.

It's 5am in the hospital on a day when it's entirely possible that I may give birth to our child and instead of being filled with excitement & giddy nervousness, I'm filled with dread & fear.



Robbie was born 6 hours after I typed those words.

Of course, we now know that we were blessed with so much more than we were cheated out of. And the NICU wasn't all bad. While it certainly was the scariest thing I've ever experienced, I found much support there. The parents there became some of the best friends I could know. The doctors & nurses truly rooted for our children in a way that few experience.

And along the way, miracles occurred. Within minutes of Robbie's birth, he was given a dose of surfactant. It was developed by the March of Dimes and allowed his lungs to expand. He would receive a second dose later. Both times, his lungs capacity was transformed. The medicines and procedures that tortured him also saved him. We saw babies crash and be resuscitated, only to go home a few weeks later. We saw babies wheeled out for their good-byes only to be back in their isolette homes the next day. We saw babies survive the unthinkable and not just survive, but thrive.

One of the first days that Robbie was there, I remarked to David that I could feel God's presence around me. I could angel's wings on the backs of the nurses. Miracles occurred there.

So on this day, I ask for your awareness. Please be aware that the March of Dimes saves lives. It saved Robbie's. Be aware that not every child does survive and we need to do more. Know that not every child gets to go home. If you can spare it, make a donation. There is a badge below to give in Robbie’s name. Be aware of the struggles that the neonatologists, NICU nurses, parents and premature babies go through. Be aware that miracles happen every day. I know. I live with one.








--Trish

16 comments:

Leah said...

How did you keep it together when dealing with such a terrifying time? I simply can not imagine. My heart aches for what you and Robbie had to go through. I am truly sorry. But I am so grateful that he is with you and doing so well. He is truly a miracle.

prem2pram said...

We are fighting for premature babies by stocking the Toddler Dictionary which is in aid of bliss the charity for babies born too soon, too small and too sick.

The Toddler’s Dictionary is a great booklet in support of Bliss – the charity for premature babies. It makes a perfect stocking filler for Christmas and is packed with hundreds of tots’ words (including translations)

Please visit our blog http://prem2pram.wordpress.com/2009/11/14/a-toddler%E2%80%99s-dictionary-in-support-of-bliss/ to read more about the Toddler Dictionary

Amy said...

What a powerful post. This really made me cry, Trish! I hate that you three had to go through all that, but I am so happy Robbie is here and absolutely remarkable in his growth and development!

Life is looking up said...

Hi my name is Amber, I have been reading your blog for a while now but never commented before but I have to say Wow. My heart aches for the pain you went through. I had a baby in 08 and accidentally got pregnant again 6 months later. Because of complications and having to have a CS I will have to have another one and I keep thinking how I feel cheated out of the experience of giving birth. But after reading your story I don't feel cheated anymore. I did have to wait 11 hours to see my baby but I got to keep her. I cannot imagine not being able to hold her for 5 days or not taking her home for 96 days. Thank you for sharing your story. I get so excited for you and Robbie every time he reaches a milestone or learns something new. You are such a good mom.

Kara said...

That was beautiful, Trish.

Anonymous said...

Thank you for your post. My son was also born at 26 weeks and I can relate to everything you wrote. I also felt cheated, and still do about some things. But he is such an amazing blessing to our family. He turned 1 in September and still struggles with a lot, mostly growth/feeding (he is tube-fed) and he's still on supplemental oxygen. But, again, he's awesome. Life with a preemie is so different than what we thought our life would be like, but it's also filled with opportunities to celebrate each teeny little step of progress. Love to you and your sweet family. Nikki

MJP said...

Absolutely beautifully written, Trish!

Just the 3 of us! said...

Hi Trish,

Your writing is eloquent, I enjoy reading about Robbie (he is TOO CUTE) and I appreciate your advice on the bump - been meaning to say these things to you.

:)

Shannon said...

Thank you for sharing your story. I have written part of my experience before but these days I just can't seem to explain how hard it was to be a NICU mommy. Thank God Robbie is doing better and thanks for telling your story so that others can better understand what we had to endure.

Kathy said...

Beautiful!

It makes me sad when you're told your baby is going through "normal preemie stuff". None of that should ever be considered "normal". :(

BabyKevinMom said...

You write so well. I am so glad that Robbie is doing so much better!! I could totally relate to the oxygen saturation levels...OMG I spent so much time staring that those numbers with Baby Kevin. Robbie is blessed to have you as his mommy!

MrsKatieH said...

I hate that I know how you feel but I hate even more that either of us feel this way. I am so glad to have "met" you and Robbie. :)

Christi said...

only a preemie mom could truly understand this, regardless of GA. You wrote it so beautifully.

Shana said...

Awesome post - I felt like I could have written the "cheated" part and wish I would have journaled more while I was on bedrest. Robbie is a miracle!

chipz95 said...

Just beautiful, Trish! You are such a great momma! God bless the March of Dimes and everything they do!

Bridie said...

good luck with tubes today - i hope all goes well!