Local Preemies: Baby Summer's Story - WGEM.com: Quincy News, Weather, Sports, and Radio

Local Preemies: Baby Summer's Story

Summer receives oxygen as she is about to be transferred from the operating room to the special care nursery by a special pediatrics nursing team. Summer receives oxygen as she is about to be transferred from the operating room to the special care nursery by a special pediatrics nursing team.
Summer lays on an Ohio table, surrounded by tubes and wires, which can be quite overwhelming to a new parent. Summer lays on an Ohio table, surrounded by tubes and wires, which can be quite overwhelming to a new parent.
Beth, Summer's speech therapist, takes a break to smile for the camera while working to teach her how to suck, swallow and breathe. Summer's great-grandmother looks on from the background. Beth, Summer's speech therapist, takes a break to smile for the camera while working to teach her how to suck, swallow and breathe. Summer's great-grandmother looks on from the background.

As told by her mother, Jennifer Tapley:

I thought everything was normal with my pregnancy, until it clearly wasn't. As I read the symptoms of preeclampsia, it became pretty clear I'd had many symptoms, which I'd brushed off, figuring they were just normal symptoms. They weren't. 

I had no morning sickness until my second trimester. Then it was all the time, right up until the day I went to the hospital. I had some pretty crazy swelling going on in my joints, and I started wearing slippers everywhere. My fingers and ankles swelled and one morning I even woke up to a blue leg. From hip to heel, it was a dull cold blue. After a few days (and several tests run by the doctor), it just went away on its own (the color, not my leg).

I was enjoying the time I spent carrying our daughter. We couldn't have her without help; We had gone through three rounds of fertility drugs and two IUIs. She was already a statistic, already our miracle, and I couldn't imagine any more trouble coming our way. But then it did. 

My doctor sent me home after my 30-week checkup with instructions to count her kicks each night. She told me to take it easy because my blood pressure was getting high. Something she said stuck with me, and likely saved my daughter's - and maybe my - life. 

"If you notice anything different, come into delivery immediately," she said. "If you're sitting there thinking, 'oh I don't know. It's probably nothing,' don't doubt yourself. Just come in."

It was just a couple nights later, I found myself worrying. I couldn't feel her kicking or rolling around. I decided to give her more time. Nothing. I poked around on my tummy a bit. Nothing.So there I was, thinking 'it's probably nothing,' but I really didn't think it was anything. So I called my doctor.  She sounded pretty concerned and told me to get to the emergency room.

I told my husband to stay home. Surely I'd go in, get some tests and be sent on my way. Little did I know when I walked out the door, I wouldn't be coming back for a very long time.

When I got to the hospital, things were crazy. I was told I had severe preeclampsia and would be delivering within the next few days. They needed to know if I wanted to be taken to St. Louis or Columbia, and if I wanted to fly or take an ambulance. I said I didn't want the bill for the helicopter unless absolutely necessary. This couldn't be happening to me. My heart felt like it dropped off a cliff. My head was spinning. My doctor had gotten out of bed to come in and send me off. I was getting medications, IVs, shots, tubes, wires, and soon I was headed down the hallway on a gurney to an ambulance for a transfer to Barnes-Jewish Hospital, in St. Louis. I can't even remember when my husband got there. Our minds have a way of blocking things. 

Once in the ambulance, I was told they'd called for a plane, but it couldn't fly that night. It was really windy and snowing. It was the longest ride of my life and I was really wishing that plane could have made it. I started to wish I hadn't turned down the helicopter. I was strapped to a gurney that was connected to the floor of an ambulance. I just kept thinking "If we get in a wreck, I could be hanging from this thing, and I'm all strapped in and won't be able to get myself out."

My baby was in distress. I was an emotional wreck. I cried and prayed and cried and prayed and tried to laugh and stay positive, but it was difficult. After about an hour, I heard a couple honks outside. I figured my husband had caught up to us. Those honks made me feel a little bit at ease, even though I knew he couldn't do anything except be there, which was really enough for me even if the only glimpse I had of him was headlights behind the ambulance. 

While I remember the ride down there,I don't remember much about arriving at the hospital. I remember we did get to skip the emergency room. My doctor had already had me admitted to a room before I arrived. 

After spending the first couple days in a labor and delivery room, doctors were sure they could hold off on delivering. I was unhooked from my IVs, allowed to eat and wheeled over to the antepartum unit. It was a whole wing full of pregnant moms with complications, like mine. I had no idea it was so common.

When things calmed down a bit, I couldn't help but cry. This wasn't what we had planned at all. And what would we do if we lost her? I couldn't even bring myself to ask if she would survive. I never asked what her chances were because I know it wasn't 100 percent, or we wouldn't be there. 

The two weeks in that wing were tough. My family brought me some pajamas and activities and visited often. Friends visited, too. I had an ultrasound every other day or so, and a non-stress test at least every few hours. Sometimes I'd have to stay hooked up to it for days, even while sleeping. 

The hospital sent over case workers to help us "deal" with the situation. They were wonderful. They were my "voice" in the hospital system. They got me permission to go outside for walks as long as someone was with me and I promised not to over do it. They got me in touch with nurses who shared my passion for crocheting, and they even found me crochet hooks in several sizes to help occupy my time. They also helped with the billing and insurance information and set us up for tours of the NICUs at Barnes and St. Louis Children's hospitals, which were connected.

My cousin came to the hospital to take our maternity pictures. My baby shower - which hadn't happened yet - was postponed until after the baby was born. 

Nurses made the stay a little more bright. We played a prank on the maternal-fetal specialists for April Fool's Day, they brought us candy for Easter and put Easter eggs on our breakfast tray. A hospital volunteer brought me nail polish. There was arts and crafts time where we painted Onesies together, and one nurse helped me guess what size I would need to make my daughter's hat. She told me to make itSummer wears her hat I crocheted her during my stay in the hospital. fit tightly around my fist. It ended up fitting perfectly. 

Things were starting to look up for us. I finally got used to the idea our baby would be small. After touring the NICU and Special Care Nursery, I was confident she would probably be okay. We didn't even ask for a tour of the "big baby" nursery. We knew we weren't going to be lucky enough to send her there. But that became okay to us. We knew she was going to be in good hands, but I was still scared. 

My husband had to keep going home for work, and one of those nights I was laying in my bed watching TV, hooked up to a monitor and listening to the galloping sound of my baby's heartbeat when it started slowing down. Quite rapidly. When it dropped from 160 beats per minute to 90, then 80, I called the nurse. I could already hear them running down the hall. It was at 70 when they got in there. The galloping was still slowing down to a slow thump thump thump. One of the nurses shut off the sound so I couldn't hear it. I was crying. Nurses were unhooking everything from the wall, lifting my bed and were running, pushing me down the hall in my bed to labor and delivery shouting orders and numbers at the nurses taking over in that wing. One nurse was holding my hand and my belly repeating "Come on baby.. come on baby."  I just shut my eyes and prayed as hard as I could through tears.

The maternal-fetal specialists were there touching my tummy and somehow got her heart rate back up. I was told it had dropped to 50 beats per minute for a full 90 seconds. I didn't have to ask if that was bad. 

I had to stay in that wing for another day for closer monitoring to make sure her heart wouldn't drop again. One more drop like that, or any other concern for that matter, and the MF specialists said she'd be delivered right away, even if my husband wasn't there yet. I called him and asked him to come back to St. Louis right away, but one of my favorite nurses had already called him. He was halfway there already (What a relief!). He didn't go home again until after she was born.


The night before she was born, we had an ultrasound and the baby was breech. So they scheduled a c-section. It was yet another disappointment, but by far not the greatest of our worries.

I couldn't sleep that night. I prayed and cried and finally fell asleep somewhere in the middle of my silent prayer.

I woke up extra early the next morning to be ready. When we were all hooked up and ready to go, the MF specialist did one last ultrasound. The baby had flipped! She was no longer breech and we were rerouted to a normal room where my meds were switched over and I was induced for a normal delivery. A friend from home stopped in for a visit and my husband went to the gift shop and brought back a balloon. Things were finally starting to feel a little bit normal. 

I was there for an uneventful four hours until the MF specialist came back to do another ultrasound. 

"I don't believe this," She said. "I've never seen anything like this happen before! She's flipped again."

I asked her if she was kidding. She wasn't.

Off we went, switching my IV fluids out again and I was in the operating room for an emergency C-section in under five minutes. They brought in my husband, and sat him next to me. The anesthesiologist told the doctor she needed to start right away. A nurse came running in and told us the NICU team was resuscitating a baby in another OR and wouldn't be in for a while. 

"How long?" the anesthesiologist asked.

"Maybe 15 minutes," she said. 

"We need to get started now," the anesthesiologist said. 

My spinal block was in danger of wearing off. They started the surgery without the NICU team. Things slowed down. This was controlled and methodical. Everyone knew what they were doing. 

In burst the NICU team with a sort of fish tank on wheels with an oxygen tank.

"Her chariot awaits!" One of the nurses said with a smile. They had just revived a tiny baby and were on to their next delivery like it didn't phase them one bit. They do this every day. I knew I was in good hands, but I was scared to death. 

All of a sudden, I heard what sounded like a tiny little cat meowing. I had to ask if that was her. We started crying. Cries meant she was breathing on her own! I prayed a silent "Thank you, Jesus! She's okay!" I started crying and felt a weight lifted off my shoulders. It was done and now she could get the help she so desperately needed.

"All done!" the doctor said. 

My husband jumped over and snapped pictures to bring back to me while the NICU team poked and prodded and started her on oxygen. They quickly wheeled her out to the Special Care Nursery. My husband chased them down the hall and I stayed behind. I couldn't really go anywhere. 

And then it was over. I didn't get to see my baby or hold her. I was wheeled to my room to recover and spent the next several hours in and out of sleep. They said I could visit the nursery in a day or two.

Given her size, the doctors told me she was a 31-weeker, and not a 34-weeker like we thought. I told them she had been a fertility baby and we knew she was not a 31-weeker. The doctor said it was odd, but agreed that it's pretty hard to argue when a baby was conceived when there are fertility treatments involved, and so she was diagnosed with an intrauterine growth restriction due to my severe preeclampsia and the meds I was given through IVs while in the hospital, which further stunts fetal growth. 

I met my daughter through a Facebook post with the rest of the world. My husband texted pictures back to my phone he was taking at her bedside. Family came in my room after taking turns meeting my daughter. They showed me pictures. I couldn't help but feel disconnected, yet filled with joy all at the same time.

I pleaded with a nurse and asked to go without some of my pain meds so I could get out of bed and visit her. So I skipped my pain medication and I got the go-ahead and my husband was able to take me to her for a quick visit, but we couldn't hold her.

She was so tiny. Her arms were smaller than my fingers, and her legs weren't much bigger. She was the tiniest person I'd ever seen. There were so many cords and wires, even touching her on the foot was tough. I didn't want to disrupt anything. I told her I loved her and would come back as soon as I could. After a few minutes, they made me return to my room.

The next day, I was able to visit again - only for a short time - and a nurse let me hold her for a couple minutes. I cried tears of joy and tears of hurt. It didn't seem fair. I wondered if she knew I was her mommy. I hoped she didn't think I was abandoning her.

She stopped breathing a few times, but nurses were always able to get her back to normal without intubation. That's the only thing that kept her in the Special Care Nursery. If she was intubated, she would have to go to the NICU at Children's Hospital. The SCN was also a NICU, but it didn't intubate.

When I was released from the hospital, my husband was running late from a visit home, so my mother was picking me up. I put my things in her car, but couldn't go with her. I couldn't leave at all. I told her I'd catch up with her later and went up to the nursery, where I would be day-in and day-out for what seemed like an eternity. I had to make up for all the missed time I couldn't spend with her over the past five days.

The first time her "brady" alarm went off, I froze, cried and watched in horror as the nurses carefully, but vigorously, rubbed and shook my tiny baby. I had the same reaction the next several times, but after a while, it became normal to me. A day would come when I wouldn't startle at all; I simply silenced the alarm while I waited and watched the numbers while watching her eyes and lips. If they turned blue, I'd rub her chest vigorously until her numbers came up, and then I'd inform the nurse how low she got and for how long her numbers had dropped. I learned how to watch the wave in the numbers and know when an alarm was real and when it was just a loose wire. 

I learned how to changed her leads, how to dry out her oxygen machine tubing, and how to run her feeding tube pump. I knew how to use the suction and all the other things attached to the wall in the hospital. Soon, I would see the fear in new families' eyes as they watched their little ones in horror when the alarms went off. I prayed they wouldn't be there very long. No one should have to go home every night without their baby.

I still couldn't hold her much, but when I did, I just prayed and prayed for her to get stronger and bigger.

After a week, she was able to get rid of her IV and wear clothes for the first time. Preemie clothes hung so loosely on her, but it's all there was. They don't really make clothes for actual preemies. The preemie size is for small newborns. But we made it work. We were still folding the preemie diapers in half. 

After a couple weeks, she was old enough to learn to feed with her mouth. A speech therapist came in and tried introducing a pacifier first. Then a bottle. She ate seven milliliters on her first try. In the preemie world, that's quite a lot. She described learning how to suck, swallow and breath at the same time as learning to run a marathon. She said it took about the same amount of energy. For that reason, we couldn't work on it very long. She needed rest. Staying outside of her heated isolette burned so many calories, she would lose weight trying to regulate her own temperature.

There were days when she would lose weight and days when she would gain weight. Weight was always measured in grams. She weight 3 lb, 4 oz at her smallest. It took about two weeks to get back up to her birth weight and it was a slow climb. Babies came and went from the nursery. No one seemed to stay as long as we did. Summer was one of the smallest ones there. Most babies her size ended up intubated at Children's. We were truly blessed.

Summer developed a pretty loud squeaking noise during breathing that some nurses described as "stridor." One night it got so loud, a doctor placed an order to have it checked out. We got Summer ready for her road trip over to Children's Hospital, where an ear, nose and throat specialist ran a camera up her nose and down into her throat. He diagnosed her with laringomalacia. It meant her flap in her throat was a little soft. He suggested she sleep on her side and propped up. 

Night after night, I sat alone (my husband had to return to work) with my face pressed to the plexiglass of her isolette. 

The days turned into weeks. Then a month.

On Mother's Day, I walked in to find an adorable Mother's Day card, marked with Summer's footprints that read "I love you Mommy and Daddy, from the bottom of my heart to the tips of my toes. Love, Summer." The volunteers had inked every baby's feet in the nursery and made the cards. It was so sweet, it made me cry.

Finally, after 35 days (45 if you count my time there before she arrived), I brought my baby home the day after Mother's Day. Then came the dread that I didn't know I'd have. I thought this would be exciting, and it was. But how was I going to do this without her monitors? I didn't sleep for three days. I sat up with her all night listening for her little squeak squeak as she breathed. I was terrified she would stop.

Even months later, when her squeaking stopped, I would wake up in the middle of the night to put my hand over her mouth to make sure she was breathing. The memory of how frail she had been just hasn't gone away.

Even now, at 10 months old and 15 pounds, she looks like a healthy baby girl. But she gets sick very easily. She's had several ear infections and colds. She's had strep throat. She's got a slight case of plagiocephaly, but not serious enough to need a helmet. Though she's doing very well in physical therapy. We work hard with her every single night after work. She's got to work twice as hard as children who were born full-term, but she's going to get there just the same. 

Our story isn't even that bad. There are so many other families out there with cases far more serious than ours. A pair of 23-week twins were flown in while I was there. I bet they're still there recovering. There are babies at Children's as small as one pound. 

Summer has taught me the meaning of true strength and has taught me that the tiniest people in the world are the strongest of all. By giving us a premature child, God allowed us to see a miracle in the making. While I wouldn't wish a preemie on anyone able to have their baby born full-term, I will say that having her early was a blessing, too. 

We plan to walk in the next March for Babies in Forest Park, near Barnes-Jewish, in April. If you want information on joining Summer's team, click here. We'd love to have you join us in the fight against prematurity!

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