Grateful for Every Minute with Sarah

January 13, 2020, 1:15pm

Twenty years ago, today, about this time in the afternoon, a one pound, ten ounce, baby girl was born at St. Vincent’s Hospital, in Green Bay, Wisconsin. She was born at 29 weeks gestation instead of the typical 40. She was 13 inches long and so very skinny. She looked a bit like a tiny wrinkly old lady. Her little head and face combined, were a little smaller than a tennis ball.

Things didn’t look like they were in the right proportions this early. Her tiny face looked like it was mostly taken up by her nose. Her leg was the length of my index finger and her skinny little foot looked like it was as long as her leg from ankle to knee. Her fingers were about the size of match sticks (around), and were not even long enough to reach halfway around my pinky finger.

She was too weak to cry, and only got out weak mewling squeaks that sounded so very tiny and pitiful. Watching videos of it later would always make her dad and I cry. But that tiny baby girl was breathing on her own!

As her mom, I felt overwhelmed with feeling that I had let her down. Somehow, my body hadn’t managed to nurture hers for long enough so that she could grow and develop into a big, healthy, fully developed, baby. Looking at that sweet, tiny little figure, I couldn’t imagine that she could possibly live. I was sure she was just too fragile and small. But I knew that I wanted, with every fiber of my being, for her to live!

I remember the first time that I got to touch her. It was not on her first day, but I think it was on her second. We were told that their skin was so fragile at this point that they did not yet want us to touch her. On her second day, her ISOLET began to malfunction and wasn’t keeping temperature stable and warm. After an attempt to fix it failed, they needed to move her to another ISOLET. She had so many wires and tubes attached that they had a board laid beside her that they were all attached to so that they wouldn’t get twisted. The board seemed almost as big as she was.

Two nurses worked on making the change, and while they handled the tubes etc., for just a few moments, since she was going to have to be touched to be moved anyway, they let me gently slide my hands underneath her and pick her up like a hammock, while they worked on getting things moved. My whole heart was in those cradled hands. I hoped she could feel my love! It was so heavenly, for that small little moment, to feel like I was helping care for her. Getting to hold her.

The NICU became my 2nd home. I was there every day with Sarah. Much of those first days were spent with her naked, laid on top a 3-4 inch long preemie diaper that looked like they’d come clear up to the top of her chest, with eye covers on, and blue Bili lights on her, to get her bilirubin levels down. Little bathing beauty! She was still being fed by TPN (total parenteral nutrition, bypassing the gastrointestinal tract) at this point.

I read a book on kangaroo care. Which was supposed to be super helpful for preemies. They would put the tiny preemies, directly on the skin of the mom’s chest, and cover her with heated blankets. The book made it sound like babies did much better who got to have skin to skin contact with their mom’s like this.

It wasn’t long before they let us try it. She did seem to cuddle in and sleep peacefully some of the time. Other times it seemed to upset her. I jokingly told the Occupational Therapist who came in and was working with her little limbs one day, that I didn't think Sarah had read the book on Kangaroo care. It was wonderful, but didn’t always go as smoothly for her as they made it sound.

The nurses started feeding her one or two CC’s of breast milk via a tube through her mouth and down her throat. Such a very tiny amount. Boy! Did she hate that tube! We have videos of her repeatedly sticking out her tongue trying to rid herself of the tube. They were able to gradually up the amount of her feeds.

One day, when she was about 10 days old, I arrived to do kangaroo care with her. They were planning on feeding her but decided to get her settled for kangaroo care, and then tube feed her. During the feed, she seemed to aspirate the milk. She was very restless, choking on the milk, and didn’t really settle down well. She was upset, and they finally ended up putting her back in the ISOLET early.

Soon, she was terribly ill. She had aspirated that tiny bit of milk into her lungs, and it had gotten infected. She had an aspirate pneumonia. It wasn’t long before she had to be intubated and put on a ventilator. She couldn’t breathe on her own any longer.

She was given IV antibiotics but was not getting better. They added in steroids. She had lost weight until she was now lower than her birth weight. Then, she started retaining fluids and she was swollen to twice her previous size. I felt bad because she actually looked healthier, but it wasn’t real weight gain. It was just water weight. They had to give her diuretics for that. I heard the nurses comment to each other that it was too bad. When I asked what, they said these little ones had to be given diuretics but that it could damage their kidneys.

The steroids helped! She turned the corner and started to recover. She was so very skinny again, but it wasn’t too long before she was breathing on her own once more. They didn’t know what about that whole experience left her fussy, but she was so fussy after the pneumonia.

The nurses would let me hold her much longer than they were supposed to. Kind of just acting like they’d forgotten the time, because she was so very fussy, but would calm when I was doing kangaroo care. Or just holding and rocking her. She cried and cried otherwise.

One day, when she was a bit over three weeks old, I came in and found my little lady dressed in something more than a diaper, tubes and wires, for the first time. She was wearing a very tiny, hand knit, pink bonnet and matching sweater with the little sleeves rolled up! Local ladies had knit clothing items and donated them for preemies in the NICU. The nurses told me that when they saw this tiny, tiny, bonnet and sweater they knew exactly which princess they were perfect for! (I think she was the smallest princess in the NICU at this point).

I prayed and prayed that Sarah would live. As hard as I tried, I could not rid myself of the terrible fear that she might not make it. That she wouldn’t get to stay with us. But I sure did pray!!

She did well after that. They did weekly x-rays for brain bleeds on Mondays. Us NICU moms would hold our breath, waiting for the results, praying for no brain bleeds. Sarah never had one. I was so grateful!

We watched little ones who had come through the NICU and gone home, come back with RSV. They would be in isolated rooms. The veteran nurses would be given duty for them. Their pinched expressions told of their concern. Nurses would have to fully suit up before going in the rooms. We watched little ones come in that were about the same size as Sarah was when she was born, and they didn’t make it. Our hearts wept with their mamas!

The nurses began to feel like family. There were two, in particular, who were so kind to me! I had withdrawal from their company when Sarah finally came home. She was discharged on March 13th. Exactly two months after she was born. She had just that morning made 4 pounds!

We were told that as it was RSV season, we needed to keep her home. She still had periods of apnea and bradycardia, where she would forget to breathe and it would slow her heart rate. This was super standard in the NICU. The alarm would sound, sometimes that was enough to startle her into breathing again. If not, the nurses would come gently rub or shake her, and she would start breathing again.

She came home with a prescription for caffeine, and on a heart rate and breathing monitor. She was drinking her feeds from a test tube like bottle that was tiny compared to any regular bottle, but came clear down to her lap. She could maintain her temperature, and feed from a bottle and had made 4 lbs. I had been doing much of her care for a while and was very comfortable with it. She graduated to home!

So today Sarah is twenty. She has gone from the curly headed little girl who held all of our hearts, to a sun tanned, active, girl who played endlessly in the out of doors with her little brother, to a young woman with great talents in writing and art, and the most wonderfully kind heart!

The last few years she has been fighting a new battle! It really started a long time ago but has slowly built. It started with severe constipation by age 5. By age ten, she would complain of fuzzy vision at times, other times losing her central vision, floaters at other times. We took her to the eye doctor and her vision was fine. One doctor, I can’t remember who, told us it was ocular migraines.

At 14, she started early morning seminary before her school day. She would often end up napping on those days. I just thought is was normal for being a teenager and getting up early. Although her brothers had never napped when attending early morning seminary.

For many years I've struggled with energy level and sleep. By the time Sarah was 15, I felt like we were racing to take a nap when we got home from her early morning seminary class. Before that, I’d nap right after we got home and she’d sleep closer to noon. She seemed to be getting sick constantly. I felt like I couldn’t keep her well.

She tried running cross country at age 16. She constantly felt short of breath, like her asthma was acting up, but her inhaler didn't ease it. She would throw up at times while running, and felt like throwing up most of the time. She was never able to run the whole course. She talked to her coach who assured her it was all normal. She would make one day of practice and then be sick for the next few days. Not because she didn't want to practice, but really sick. It all made her wonder if she was a real wimp. But she used to be able to run. I remember going for walks when we lived in Wisconsin, and she would run and run and run.

Nausea became a huge issue. She often would wake with severe nausea, would still be nauseous after napping, and I’d hope we could just get a little something in her for food before she went to bed for the night. I worried that she wasn’t getting in enough food to maintain health. She also hurt almost every time she ate. Not very enticing to eat when you’re super nauseous and you are going to hurt once you do.

Exhaustion became severe. Just one nap wasn’t enough anymore. Over her last three years of school, she went from home schooling with a full course load, to struggling to keep up well with a half load the next year, to not even being able to keep up with a couple of online classes the following year.

If we went to a doctor’s appointment one day, she’d be more ill for the next week. A week at EFY (before things got really bad), put her down hard for a month, even though one of the days of EFY she’d spent in bed with a migraine and I picked her up a night early.

She would get dizzy often. Fussy vision often. She was often very shaky. She would get short of breath just trying to stay sitting up. She would fall without tripping on anything. Felt sick all the time, and was too weak even to draw much. Just getting out the materials would sap her energy and she wouldn’t have any strength left to use for drawing. Either that or her vision would go, and she couldn’t draw because she couldn’t see clearly. Stairs were an issue. Walking very far was an issue. She got to the point that she was sleeping most of the day every day and in pain all of the time.

We found out she has something called POTS. Her autonomic nervous system isn’t functioning properly and doesn’t get enough blood to her heart. So, all of her organs get short changed which is why it affects so many things. Medications are helping a little. She’s doing physical therapy to try to help more. Life for her is still full of pain and limitations at this point.

It has been heart breaking to watch her decline over the last few years. But I have always been intensely aware, that I am so grateful for every day we have gotten with her. So very aware that we may not have gotten them at all. We are so very grateful for having her with us!

I know she doesn’t always believe this, but she is such a special girl! So incredibly talented! With stories bubbling out of her that need to be written and illustrated by her. With music in her soul that she needs to share with the world! So much she wants to do to help others, and the talents and love she needs to be able to do it.

Today was a good day. We went to a movie for her birthday. On the way home we played music. First, she picked a song by a French artist which was in French. We all sang. She has played it enough that we know it by heart. Then she picked a song by a German Celtic music group. She knew every word of that one by heart too; singing in German. It made me smile. She can tell me whether someone is speaking Mandarin, or Korean, or Japanese. She has a soft spot in her heart for anyone who’s different, and a great interest in people from many different countries. As a matter of fact, I don’t think there is anyone she doesn’t have a soft spot in her heart for!

I’m so grateful to be her mom!

We love you Sarah!! Happy Birthday!!