Sarah Kate’s Birth Story: The Epilogue

January 3, 2013 · 10 comments

in The Girl & Cerebral Palsy

Thank you to all of you who tuned in for Sarah Kate’s birth story. In case you missed it, you can click here for Part 1, Part 2 , and Part 3. I promised you an epilogue, which I’ve written as a series of vignettes, rather than a narrative like the first three parts, and added quite a few more photos. Thank you for reading.

Sarah Kate - One Week Old

53 Days.

That’s how long my baby girl stayed in the NICU. All but the last five days of that time was in the incubator. Being in the incubator meant we couldn’t hold our baby more than 30 minutes at a time, and only one time per day. Neither of us was allowed to hold her at all until her third day of life.

Many days Mr. Andi didn’t hold Sarah Kate at all, making the sacrifice so that I could have the honor. He has never talked about it very much, but I’m sure it pained him at the time. The first time we were ever alone as a family, she was seven weeks old, and that was in a private parenting room at the hospital.

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I was discharged on New Year’s Eve, without my baby.

Mr. Andi made the long walk to the parking deck alone to retrieve our car, and he said that it was one of the worst feelings of his life. He knew my heart was breaking, and he wanted to be strong for me, but his heart was breaking, as well.

Sarah Kate was small for her gestational age.

She should have been near four pounds. Instead, she weighed only two pounds, nine ounces. She lost weight, like all newborns do, but the amount she lost was frightening. She fell to two pounds, two ounces. She didn’t reach her birth weight again until January 22.

In fact, she was scary-thin.

She had so little fat on her body that she had no butt cheeks. I know that’s tough to visualize, but it’s true. Her diapers were smaller than the palm of Mr. Andi’s hand. And they were too big.

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We were stingy with our time with Sarah Kate.

In a few instances, family or friends visited the NICU and while I appreciated their interest and concern, I resented their presence. I wanted to hold my baby in privacy and near-silence. I didn’t want to sing to her with an audience.

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One day, a new preemie arrived in the incubator next to hers.

During the course of his stay, we met his parents – a sweet, soft spoken couple. They had lost their first child due to prematurity; David, Jr. was their second. Knowing that our tiny baby was now free of imminent danger, we prayed and hoped that David would survive.

One day, we arrived in the NICU and David was gone. We cried.

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Another angel appeared in the NICU.

Our neighbor’s sister, Joy Hanson, was a neonatal intensive care nurse. She was assigned to Sarah Kate every day she worked during those 53 days, save one. She was present for every major milestone Sarah Kate reached. We are still friends.

As the days stretched into weeks, we watched her weight numbers creep up slowly – too slowly.

Until she could maintain her body temperature without assistance – the rule was a minimum weight of 1650 grams (3 lbs. 10 oz.) before a baby could be moved – she had to remain in the incubator. Most babies can’t maintain their temperature until they weigh at least four pounds. She reached 1650 grams on the morning of February 12 and was moved to an open crib, but the night nurse told us that it had been a clerical error – she actually only weighed 1640 grams.

“Aunt Joy” was working that day – but she was scheduled to be off the next few. Was it really a clerical error? You decide.

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In the days just prior to Sarah Kate’s release, I was talking to my mom.

She asked in joking bewilderment, “What are you going to do with a four pound baby?”

I responded simply, “The same thing you do with an eight pound baby. You just do it smaller.”

Sarah Kate exceeded expectations and left the NICU weighing three pounds, fourteen ounces.

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Looking back ten years later, I’m amazed.

In many ways, her NICU stay was easy. She had many typical preemie problems, like “forgetting” to breathe, an inability to gain weight, anemia, and a gut that was too immature to accept even 1 cc (1/10 of an ounce) of breast milk. But comparatively speaking, she sailed through the NICU, and we quickly moved on. When she finally came home, we had to do a few things most parents don’t have to do, but for the most part those 53 days seemed like a bad dream. We were certain the worst was over.

But was it?

It’s hard for me to say now, ten years later. She wasn’t officially diagnosed with cerebral palsy until over a year later, and her delays weren’t acknowledged by the pediatrician until her nine month checkup. In some ways, those days were easier, because we didn’t have to make hard decisions about therapy, and she didn’t cry about not wanting to wear her braces. It’s easy to look back now and wish for the blissful ignorance we had then.

But when I consider all of the things that could have gone wrong that didn’t, and when I look at that frighteningly thin body in the photos and compare it to the ripped shoulders of my softball player, I am amazed, and I feel blessed.

If you enjoyed this post, download my FREE eBook, There's Sunshine Behind the Cloudsa resource for special needs parents. There’s Sunshine Behind the Clouds: Surviving the Early Years as a Special Needs Mom is for every mother of a child with special needs who is at the beginning of the journey, struggling to gain her footing on ever-shifting sands. It focuses on how to not only survive the emotional roller coaster of special needs parenting, but enjoy the ride.
Sarah January 3, 2013 at 10:31 am

She looks better than I did!

Carole January 3, 2013 at 10:42 am

Beautifully done! Loved reading this wonderful account in honor of SK’s 10th birthday.
Love you

Maggie Fluck January 3, 2013 at 11:29 am

it’s amazing isn’t it? there was also something in the NICU that made me realize how lucky we really were. rachel had all these things against her, and yet, she surpassed expectations from day one. i will never forget seeing a family say good-bye to their baby one day as i walked passed to see rachel. the anguish in those cries broke my heart into pieces. we were lucky that rachel was born years ahead of SK. although we weren’t able to hold her her first two days of life, after that, we were able to hold her as long and as much as we wanted. it was encouraged. i am sad for your husband because i know how much holding rachel meant for my husband.

Andi January 5, 2013 at 7:30 pm

I completely agree with you. Once we got through the scary days in the beginning, we were able to see how fortunate we were.

Jennifer January 3, 2013 at 6:29 pm

Absolutely beautiful Andi! Thanks for sharing!

Heather January 4, 2013 at 11:38 am

This really is amazing. “Forgetting to breath.” I remember using that term and thinking it’s perfectly descriptive but how on earth does it even happen.

Such great milestones. Thanks for sharing.

Sylvia January 4, 2013 at 9:13 pm

Amazing! She was so skinny! I would have been afraid to hold her for fear of breaking her! It’s incredible how technology today can save these tiny preemies! What a beautiful blessing she is! That little guy on your side bar is too!

Andi January 5, 2013 at 7:28 pm

I was! Terribly afraid! But after a little while you get used to it.

Jackie January 5, 2013 at 6:33 pm

I’m so glad I came upon your blog from Love That Max. Thank you for sharing your story.

Leonie April 28, 2013 at 6:54 pm

I’ve really enjoyed reading your account of Sarah Kate’s birth. There are so many parallels between her story and my son’s birth at 24 weeks gestation almost 9 years ago. He also has cerebral palsy but has been really healthy and is progressing well after those first 6 months in hospital. I can’t wait to read Sarah Kate’s blog, and hopefully my son will too.

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