PREEMIE FACTOIDS

Did you know that over 450,000 babies are born premature in the United States every year? And 15,000,000 worldwide. Because of their early arrivals preemies are more susceptible to a myriad health issues including apnea, PDA (Patent Ductus Arteriosis ) and RDS (Respiratory Distress Syndrome ). But technology and science continue to evolve. In fact, a preemie born today has a much greater chance at survival compared to only 10 years ago.  Keep checking back for more factoids.

Christine's Story - IUGR and HELLP Syndrome

 I found out I was pregnant on a sunny August morning. It was thrilling! My husband, Kevin, and I were walking on air. We went happily along my pregnancy waiting for May first! I daydreamed of hours of drug-free labor, with my husband by my side, finally pushing out a pink 7 lb crying baby and then naturally breastfeeding in the moments after birth. I simply could not imagine how it would really unfold.
In many ways my pregnancy was normal. Although, for weeks before my birth there were warning signs. As a first time mom, I had no idea that my brutal headaches, blurred vision, minimal baby movement, and puffy face were all clues that things were not alright. There were a couple points when my doctor ordered extra tests, but all my blood work and urine tests came back normal.

On Friday, March 24, I went to my 35 week appointment. My mom (a labor and delivery nurse) came with me. My doctor measured my belly, looked confused at the tape measurer and measured again. She just said, "huh". She then took my blood pressure..... 4 times! She then told me that my belly had lost 2 cm instead of growing 2 cm since my last appointment. I was measuring 4 cm smaller than what I should have been at that point. She ordered an ultra-sound. However, she did not put a rush on the order and she told me "not to worry." My mom told me that measuring a uterus is not an "exact science." I scheduled my ultra-sound for the following Thursday and tried not to worry.

My husband and I went to my ultra-sound, excited to see our baby again. The tech began the exam and then quickly turned the screen away from us. Her face went white. She jumped up to go call my doctor. Kevin turned the screen around and we read the words, "low fluid". The tech came back to the room, finished the scan and told us my doctor would contact me shortly.

At 4:30 that afternoon, while standing in my husband's store, I finally was able to talk to my doctor. This is what she said, "Christine, sweetie. I've done the measurements over and over. The baby is far too small. She is smaller than the 10th percentile and not growing adequately. I do not like to deliver preemies, but I have no choice. We need to induce you, right now. Get Kevin and go immediately to the hospital. This will probably take a while, so you won't have the baby until sometime tomorrow." I said, "But tomorrow is my birthday." I simply couldn't get my head around what she said. I was 35 weeks, 4 days, certainly not a very early preemie, but this was not what I had planned!

As I got into the car, a pain struck my chest like I was being stabbed and my head pounded so badly I began to cry. I told my husband to hurry. I told him, "I'm dying. I'm having a heart attack!" He thought I was having an anxiety attack. We were both wrong, although, I was dying. From that point forward things went from bad to worse. We got to the hospital where I was admitted to ICU, not labor and delivery. I called my mom. She asked to talk to my nurse. When my mom got back on the line with me she told me that I was about to feel worse than I ever had in my entire life and that she and my dad would get there by early the next morning. I couldn't see, my head felt like it would explode, I had stabbing chest pains, and was now vomiting. The nurse started many medications including anti-seizure medications, antibiotics, Pitocin, anti-nausea, and more. We settled in for a long night in the ICU, hoping my cervix would cooperate. My husband slept on and off. I did not sleep at all. At one point, I asked my nurse if I'd get to hold my baby when she was born. She told me honestly that she just didn't know.

The next morning I was moved to Labor and Delivery. My parents had arrived from Michigan. I was sicker than before. It would be days until I fully understood what happened to me. My mom was there, on my 27th birthday fully aware of how sick I was. At one point, she told my dad, "we need to think of what we'll do if we send Kevin home with the baby without Christine." She was bracing herself for my death. She feared she would lose her only daughter on the very date she brought me into the world 27 years earlier. I spent the day in and out (mostly out) of consciousness. I slept through blood draws, cervical exams, and blood pressure checks. At one point my blood pressure was 210/180. It was later that I would learn my headache was caused by brain swelling. My chest pains were actually my swollen, failing liver pressing into my upper right quadrant. I was suffering from multiple organ failure due to a rare prenatal condition called HELLP syndrome (delivery was the cure). Many have asked why my doctor didn't do a C-section. I simply could not survive surgery. A normal blood platelet count is over 150,000; mine was 6,000. I would have bled out immediately from surgery.

It was a very long day. Most of which is a blur, although I have a few crystal clear memories. Around 3pm I opened my eyes and told my mom that I had peed on myself. She looked up, smiled, and said, "No sweetie, your water broke". My labor was finally kicking into high gear. Shortly after that my mom said that I had "that labor look." My face would tighten and I'd frown every couple minutes, but I said nothing and did not move. My doctor came in to tell me they would start the epidural. I said, "But I wanted to do this without drugs!" Everyone laughed.  He said that none of this was as planned and an epidural would help lower my blood pressure.

I slept through the epidural.

Just before 7pm, my mom told me she was going to have a quick sandwich with my dad. She said, "I won't take long. When this happens it will happen fast". Minutes later I told Kevin that something felt "strange." My nurse checked me. I was complete and crowing. Suddenly about a dozen people came running into the room. The resident sat me up and screamed at me to push. She had neglected to call my doctor. I said, "But my mom is getting a sandwich!" Things happened so fast. I tried pushing, but had little energy. The resident looked at me and yelled, "Christine! Get this baby out now or I will cut you!" I tried. The baby's heart plummeted. The doctor cut. As she cut she said, "Oops!" She had slipped. She cut from my vagina, straight down to the side of my thigh. My baby slid out, limp, blue, not breathing or moving. It was 7:16pm, March 31, 2000 when Isabelle Anna was born! I was completely alert. Scared. I briefly touched the top of her tiny head. She was moved to the side of the room where the NICU team went to work. I watched them bag her, pressing on her tiny chest, placing the breathing tube down her throat. My husband stood shocked, as white as a sheet and terrified. He said, "A girl. Right? That is a girl, right?" No one answered. My mom came into the room. She quickly looked at Isabelle shocked; she was far smaller than the estimated 4 pounds. She rushed to me. Later I would think of that moment. I would realize that although my mom was worried about her first born granddaughter, it was her own daughter who she was really worried about. She needed to take care of me. The NICU team ran out of the room with Isabelle, I pushed Kevin to follow. By then, my doctor was there. She was furious with the resident who performed an unnecessary episiotomy. She hugged me and told me to lie back and sleep while she went to work repairing my injury. Somehow I did sleep.

When my doctor delivered my placenta it was black and in pieces. That was the answer to all of this. Placenta failure. It triggered this awful chain of events. Years later we would learn that I suffer from an auto-immune disorder. This disorder treats a pregnancy as a foreign object, fills the placenta with clots, and, therefore causes placenta failure. It was later responsible for the loss of 3 pregnancies for me. But, at this point we thought it was all just an awful fluke. We jokingly blamed my mom, "curse of the nurse". Only the daughter of a L&D nurse would get the most rare prenatal condition. In my mom's 40 year career she only saw 4 cases of HELLP syndrome; Three of those moms died from liver failure. The situation was more serious than I could comprehend at that point.

About 2 hours later the neonatologist came in to me. My NICU journey was about to begin. She sat next to me, put her hand on my leg, and started telling me about my daughter. She was 1360 grams. She was grams, not pounds, grams. I later learned that was 3 pounds, 0 oz. She had Intra-uterine growth restriction (IUGR); she was smaller than the one percentile for her gestational age; the most extreme case of IUGR that hospital had ever seen. From there the doctor said, "If she lives through the night....." I heard nothing else. My head was spinning. My husband sat next to me, holding my hand, speechless. This certainly was not what we planned. My husband and dad were then allowed to go meet her. I remember being relieved, jealous, angry. I wanted to meet her! I was told it would be 24 hours until I could meet her. Apparently, my kidneys and liver needed to function before I could see her. I tried to negotiate. It didn't work.

Shortly after that, my dad came back to me. He was sobbing. Hugging me, holding me he said, "She is beautiful. She looks just like you did when you were born (I had been a preemie too). She's going to be just fine." When my dad and husband went to see her the nurse was putting in an NG tube. Little tiny Isabelle Anna squirmed, batted at the nurse, turned her head, fought that tube. She was a fighter!
I was transferred back to ICU to wait for my kidneys and liver to begin working and for my blood pressure to come down. Nearly ten and a half hours after Isabelle's birth my nurse woke me up at 5:30am. She said, "I'm sorry to wake you Christine, but I wanted to let you know your baby is off the ventilator." I was overjoyed! I told her that's a great reason to wake me up! The next day, several people came to visit. Several people saw and/or met my baby before me. I begged everyone who walked into my room for details of her eyes, hair, feet, fingers, skin tone, etc. I threatened to remove my own catheter and iv. Finally, in the evening of April 1st, my kidneys started working. My mom and nurse began to jump up and down and dance. They were doing the "urine dance!" Now, they just needed a better platelet count and blood pressure and I could meet my girl. It was the longest day ever! Finally at 8:30, my nurse wheeled me down to the NICU.

It was so surreal. The machines, monitors, isolettes, tiny, tiny babies (Isabelle was a NICU giant at 3 lbs). I walked into a world that felt like a different planet. I heard unfamiliar words, bilirubin, IUGR, NG tube, central line, lipid drip, etc. etc. I heard scary predictions like "developmentally delayed" and "learning disabled." I could not/would not receive that. Can I hold her? That was my only question at first because I couldn't think of anything else. The answer was no. That was crushing. I sat with her until I couldn't hold myself up (still recovering and in unbelievable pain from the botched episiotomy). I then became obsessed with feeding her. I had to pump! She needed my milk! I felt so helpless not being able to fully parent in the NICU, but I could make milk! I pumped every two hours around the clock, quickly having way more milk than she could possibly handle. I got to know the nurses, doctors, other families, and found my way around this new planet. On day three, I got the chance to hold my sweet girl for the first time. It was amazing. She cried and cried, turning red with anger, as the nurse got her ready to leave the isolette. As soon as she was in my arms, the crying stopped. WOW! I am her mother! She needed, wanted, and knew me!  

As I recovered, I was moved from ICU to the mother-baby unit.  I actually didn't want to be moved.  I didn't want to be near all the moms who got to hold their babies.  A nurse explained that in mother-baby patients shared rooms.  My mom was shocked.  She asked what we would have to do to get me a private room.  It was $150 per night, out-of-pocket, for a private room.  My mom looked at my dad and said, "Go pay whomever you need to.  My daughter isn't going to share a room with someone who gets to hold her baby!"  It was such a gift.  She understood, she had once been in my shoes, when I was born.  Even so, it was tough to walk by rooms where I saw families snuggling with their pink-cheeked newborns, or waiting in the elevator with a couple leaving with their newborn snuggled in a car seat.  Those were cruel reminders that Isabelle was not leaving this place anytime soon.  

The day I was discharged from the hospital was also the day of my baby shower.  I got home to my apartment; two of my closest friends were waiting for me. They hugged me and I remember just saying, "I feel so empty handed."  They both climbed in bed with me, under the covers, one friend on either side, a box of tissue in the middle.  They stayed with me, cried with me, and let me just be sad.  They didn't leave until I was asleep.  Every night at home without my baby was awful; I would lie in bed with my hands on my belly, wishing Isabelle was still there, kicking.  It just wasn't right that my baby wasn't in my womb or in the bassinet next to me. 

The NICU is where I first learned to stand up for myself, and more importantly, my child. I found my voice. I came in one morning to find a nurse had given her formula. She said I had "no milk" but in reality, she didn't bother to check the freezer. I think my eyes turned red, my head spun around, and my voice growled! I asked questions, read her chart, hunted down the doctors for answers. I realized that the NICU was scary, but I couldn't let it scare me for long. I had to own it! I had a voice, Isabelle didn't. Although, what she did have was strength. She was the toughest 3 lbs that NICU had ever seen! She was a fighter. She met every milestone they wanted sooner than expected. Quickly, she was simply a "grower, feeder." Three weeks after our journey began we heard those magic words, "do you want to go home today?" HELL YES! Isabelle was 3 lbs, 14 oz the day we left the NICU. She was 2 ounces under the NICU requirement, but because she was so strong and such a fighter they were confident that she would thrive.

I wouldn't ever want to relive my NICU experience, but it was a defining time in my life. It shaped who I am now in many ways. I found my voice and confidence in the NICU. I became a stronger version of myself in the NICU. I decided in the NICU that my old career was done, that whatever I did with my life after that would involve breastfeeding, babies, and supporting other moms. It made me a more confident mother. The first time I held Isabelle I realized I was what she needed and I could do this mothering thing my way. There's something pretty powerful in that, especially for a young, first-time mom.
I was blessed to go on to have 3 more beautiful kids; Jack, Patrick, and Ella Jane.  Often during my 2nd pregnancy people would tell me they thought I was crazy to get pregnant again (especially when my daughter wasn't even a year old).  But, I'd laugh and say, "nobody is that unlucky twice!"  I needed treatment for my auto-immune disorder and was always considered high risk (watched like a hawk by my OB/GYN).   But, lightning did NOT strike twice.  All three of my other children were born at 38 weeks (2 without epidurals, like I had always hoped).  Each was a bit smaller than average, but still very healthy with not even one minute spent in the NICU.  I even was able to reach down during delivery and pull my babies immediately to my chest so they could breastfeed in the seconds after birth.   As tough as my first birth and NICU experience was, I didn't let it stop me from my dream of 4 kids.

Today, Isabelle is a strong, healthy, smart, vibrant teenager! She's still tiny. She never did "catch up." But, she is proof that good things do come in small packages. She still has that preemie fire. She has no problem speaking her mind and fighting to get her way. I do think that her early, difficult entrance into this world gave her that spirit, spunk, and strength. It hasn't always been easy raising someone with such a strong will, but she is amazing! And, she is far from developmentally delayed or learning disabled.  She continues to amaze us every day. I often tell people that it wasn't the best birthday I ever had, but the best birthday present I've ever gotten! And every year she continues to be the best birthday present ever!

Isabelle at 13yrs.