Tuesday, August 02, 2005

Alex the Miracle Preemie!

This is the story of my son's birth!

Alexander's Birth Story
As told by his Mother: Martha
August 1, 2005

It was on Mother's Day 2002, Rick and I found out we were going to be parents. We glowed with excitement dreaming of our perfect birth while living in ignorant bliss of what was ahead. The next several months went along smoothly, with my belly and our anticipation growing. I had only gained 13 pounds and was feeling great when I woke up in my 28th week of pregnancy and noticed how swollen my feet had become. I showed my mother who was visiting from out of town and she assured me it was from being on my feet too much the day before and heading into my third trimester. As the week progressed so did the swelling moving up my legs and face. A severe headache crept in along with extreme fatigue. I was suddenly feeling quite pregnant.

On November 8th, I was diagnosed with a severe onset of preeclampsia (AKA: toxemia and pregnancy-induced hypertension (PIH), my blood pressure was 150/100. Preeclampsia most commonly occurs during first pregnancies. This disease is characterized by swelling, high blood pressure, and the presence of protein in the urine. Preeclampsia occurs in 5 to 10 percent of all pregnancies. No matter how ill you become with this disease, whether it's sudden or gradual, the only cure is delivery of the baby. I was put on bed rest and told I was only allowed to leave my bed to go to the bathroom. The swelling continued to get worse as did the headaches and my vision started to blur. Rick and I were going daily to the doctor's office enduring more and more tests. We suddenly went from thinking we were going to have a mid January baby to praying we would get past Thanksgiving.

Rick arrived home from work on November 18th to find me lying in bed, very pale, swollen and disoriented. I had no energy and could barely lift my head off the pillow. The fear in his eyes brought my fears to life. I must have looked as bad as I felt. He rushed me to the doctors and then to the hospital where I was admitted with severe preeclampsia and HELLP syndrome (Hemolytic anemia, Elevated Liver enzymes and Low Platelet count). HELLP syndrome occurs in about 10% of patients with severe preeclampsia. I began throwing up violently and my liver started shutting down causing severe pain in my back. My lungs began to fill with fluid and each breath was harder to take. I was put on oxygen as my team of doctors tried to decide what the best form of action was and create a plan. This began a world wind of events, starting with shots of betamethasone, a corticosteroid given in 2 injections, 24 hours apart before birth to speed up a preterm fetus's lung development. Rick and I received a tour of the Neonatal Intensive Care Unit (NICU). I cried all the way through just staring at the babies with tubes, wires and bright lights. My husband and I were paralyzed with fear as to what lied ahead of us. Phone calls went out to family across the country. Our parents jumped onto airplanes to come lend their support. Prayers rang out across the world for our future son and my health.

Forty eight hours later my body could no longer handle being pregnant and my vital organs went into failure. My blood pressure soared up to 188/132. The doctors came in and said it was time to get delivery rolling or they may loose me and the baby. Due to my HELLP syndrome a c-section was no longer an option in fear of loosing too much blood, having a stroke or possible death. That evening, November 20th, the doctor placed cervidil onto my cervix to soften it and prepare my body for labor. We were then told to go to sleep and get as much rest as possible. We thought this was kind of funny as didn't they realize I was only 31 weeks pregnant and mentally we were not at all ready for what was about to take place. Rick and I tried to sleep that night with the sounds of my blood pressure machine beeping and nurses coming and going. Rick lay in a cot next to my hospital bed, holding hands we prayed like we have never prayed before. This was just not how we pictured all of this happening!

At 4 A.M. on Thursday, November 21st, I felt something that was like the baby flinching and my stomach jumped. Minutes later I began to feel water leaking down my thighs. I started laughing and Rick asked what was going on. I told him that I thought my water had just broken. I pushed the nurse?s call button and waited. Finally a voice came over the speaker asking me what I needed. I replied that either my had water just broke or I was peeing the bed, with that we heard fits of giggling nurses as she replied I doubt your water just broke but I'll be right down. She came in and sure enough I was right, my baby broke his own bag of water and I was now officially in labor. I was moved to the labor and delivery floor, with a huge room directly across from the nurse?s station. I also got my own nurse who was ordered not to leave my room without a replacement, as I was labeled a high risk patient. They started a pitocin drip, and Rick and I watched in awe as people came in and out of our room preparing for our preemie son's awaited birth. At this point I had several IV's with antibiotics, fluids, pitocin and magnesium sulfate flowing through them. Along with the blood pressure machine, catheter and an external monitor for the baby, I felt like an alien!

At 2:00 P.M. as the contractions began to increase I asked for an epidural. I was now just shy of being 4cm dilated. I was able to rest and close my eyes for an hour before the contractions came back with a vengeance. I had to really concentrate on breathing and focusing to remain calm. The doctor came back and ordered me a second push of meds into my epidural. She also inserted an internal monitor on the baby?s head in order to get a better read of the contractions and the baby's heart beat. After that she left to do a c-section and said she would be back in about an hour to check on me. The pain was intense now and Rick was working to keep me comfortable and cool. My nurse and Rick were watching the monitors and talking me through each contraction. After 20 minutes the nurse suggested she check me again, as she rolled me onto my back I felt the baby suddenly drop. At that point I got the undeniable urge to push and push now! The nurse said okay your ready, and grabbed Ricks hand and had him push my legs to the side and said don't push, I will be right back! We heard all kinds of commotion as they raced to get my OB, the Neonatologist, and the NICU birthing team. Everyone was called back to my room STAT. Rick and I looked at each other and a wave of emotions rushed over us, we both began to cry. We were moments away from being parents and entering into a world of the NICU.

After three pushes my OB allowed Rick and I both to rub our sons head before he was completely born. This was a moment we will never forget; it was the calm before the storm. After my next push our lives were going to be changed forever. As I felt my son's hair I began to cry tears of joy. With my next contraction Alexander was born at 4:11 P.M. He weighed 3 pounds 3 ounces and was 16 3/4" inches long. His body was covered in soft blond almost white hair, the same color as the hair on his head. Tiny does not even begin to describe him. He looked like a puppy first born. The doctor allowed us to quickly kiss him before he was taken over to where the NICU team began to work on him. I watched from my bed and could occasionally see his tiny feet kicking under the bright white light. I could see that my son had his father's feet, with the second toe being larger than the first. I kept crying and crying. I had tears of joy, tears of fear, and tears of exhaustion. Just then my tiny little son proceeded to pee all over the doctor, not once but twice. I couldn't help but laugh. Rick and I along with over 25 staff members in the room quietly sang Happy Birthday to Alex. The NICU team realized my son was in distress and whisked him away to the NICU. After numerous spells of apnea he was intubated. The team also placed an umbilical venous line in order to begin medication. Once he was stable he was prepared for transport to Children's Hospital San Diego, CA (CHSD) a 30 minute commute from Scripps Memorial Hospital in La Jolla, CA where he was delivered and I would continue to stay. My husband and I were allowed a quick visit with him before transport where the team answered a few questions and took some pictures for us. I do not recall much of this time as I was exhausted and my tears were truly all I could see. It was gut wrenching knowing my son was being taken from me and I was having to give up all control, although I had faith knowing he would be in fantastic care.

Upon arriving at CHSD he was quickly diagnosed with respiratory distress syndrome, given a dose of surfactant and remained on the ventilator. He continued to have spells of apnea and bradycardia. The doctors began giving him caffeine to help with his breathing problems. The first thing they needed to maintain was his breathing and heart beat. Alex was jaundice and needed phototherapy for 3 days. Within the first 24 hours we felt like he was starting to improve, then they started more tests.

The doctors had several problems with his umbilical venous line and ended up removing it opting for a central venous catheter (AKA: picc line). The catheter was inserted through the skin into a vein in his chest. It was threaded through the vein until it reached a large vein near the heart called the superior vena cava.

Alex had a common preemie problem his patent ductus arteriosus (PDA) valve was not closing on its own. The patent ductus arteriosus (PDA) is a special blood vessel that we all have as babies in our mother's uterus. The ductus is responsible for transporting blood from the right side of the heart, bypassing the nonfunctioning lungs of the baby, and putting it directly into the aorta for circulation to the baby's tissues and organs. Shortly after birth, it is important for the ductus to close, which then directs blood to the now functioning lungs for oxygenation. If this closure doesn't occur, some unoxygenated blood gets sent to the lungs like it's supposed to, and some unoxygenated blood gets pumped directly into the aorta. To try and get the ductus to close they gave Alex a dose of indocin. An infant can have up to three doses of indocin before needing heart surgery to manually close the duct. However, after a head ultrasound it was found that Alex had a grade 2 intraventricular hemorrhage in his brain that the doctors believed occurred before birth. They feared this could cause mild to severe mental retardation or learning disabilities. The true lasting effects of this bleed would not be known until Alex was older. Due to the bleed he was no longer able to have the indocin his PDA valve needed. Rick and I were paralyzed with fear as they were now discussing heart and brain surgery on my four day old baby boy. A baby I couldn't see, touch, hear, hold, sooth or stare lovingly at. All I could do was pray and ask God to guide those doctor's hearts and minds. The next day while prepping for heart surgery it was found that the PDA valve had closed on its own and no surgery was needed. This was very exciting as it was the first time in 4 days we were getting positive news.

Five days after Alexander's birth I was finally allowed a four hour pass out of my hospital to go and visit Alex. I had to promise to sit and stay in a wheelchair. My husband arrived so excited for me to get to spend time with our son. He tried to prepare me for the things I would see in the NICU. I don?t think anything could have honestly prepared me. As he rolled me into the massive NICU the bright lights stung my eyes as my ears filled with the sounds of beeping from the many machines. As we rounded the corner to see our Baby Alex, I had to resist the urge of crying as I saw all the tiny babies fighting for their lives with their parents standing nearby offering all of their support and love. Finally I see an isolette with a gorgeous hand colored sun with my son's name written across the front in large letters. The tears started to spill as I thought about someone putting in that love to personalize his isolette. Rick asked me if I was ready as several nurses came over to greet us and offer me support. As he lifted the blanket I stood up from my wheel chair and caught my breath. There beneath this huge machine, covered with IV's, tubes, tape, a mask and the ventilator was my heart and soul. This child, this boy, our son, weighing just 2.8 pounds lay on his belly, peaceful in a world of chaos. His quiet isolette shutting out all of the suffering going on around him. I stood there in total anguish, tears spilling onto the floor beneath my feet. I wanted so badly to grab my baby and run from this world I knew nothing about. Yet in my heart I knew these people were the key to saving my son. They lifted the door and allowed me my first true skin to skin contact. He was warm and smelled so good. I could see he had my small lips and my husband's eyes. He was gorgeous and looked like such a little old man. A friend sent us a beanie baby and my husband laid it on top of him and I was shocked seeing my son was nearly the exact same size as this tiny stuffed animal. I began calling him Boo Bear, a name we still use today. It was at this first of many visits that we received our second good report. Alex had stopped loosing weight and was beginning to finally gain. We learned the bleed in his brain had stopped. Alex would not be needing brain surgery or a shunt. We were nervously excited. Alex did however need a blood transfusion as he was anemic. Rick quickly chose to donate his own blood for the procedure. There we stood this new family of three with the sounds, lights and people in the NICU surrounding us. Rick and I sang quietly to Alex, encouraging him to fight with everything he had. We told him of our love and of all the prayers for him. I started to feel extremely light headed and knew I had been standing too long, I saw I was bleeding heavily and needed to get back to my hospital quickly. I knew that Alex was right where he needed to be, and that the doctors and nurses would provide him with excellent care. Yet it was still very difficult to leave.

Two days later I was released from the hospital in time for Thanksgiving. My mother made us a traditional turkey dinner, but I had such a hard time feeling festive. I felt like a piece of my heart was left behind. How could I sit here and eat while my baby struggled for every breath he took. Before dinner Grace was said as we had so much to be thankful for. God granted us life, strength, and faith. We received a phone call from the hospital that afternoon letting us know the ventilator had been removed, and I would be allowed to hold Alex for the first time later that evening. I could not scramble out of the house fast enough. This truly was an incredible Thanksgiving.

As they laid Alex into my arms we began our first of many sessions of kangaroo care. Alex mewed like a kitten, with no real ability to cry. He stared back at me with my own blue eyes, learning my face while I learned his. A nurse took our first family photo. Alex had a gavage feeding tube that ran through his nose into his stomach, this is how he ate every 3hrs having only a few cc's of breast milk at a time. He still had various wires and tubes attached to him watching his breathing, pulse, heartbeat, and pumping numerous drugs into his little body along with an oxygen cannula. It was at this moment that I knew we truly were going to be survivors. I made certain to tell my son what a miracle, fighter and survivor he was.

On November 30th, Alex was declared well enough to be transported back to the hospital he was born at. This was a huge break through. We still had numerous obstacles in front of us and many ounces to gain but this was the beginning of the rest of Alex's life. We were now considered a feeder and grower preemie. I spent 8 to 12 hours a day by Alex's isolette, being his voice when he had none, doing as many procedures as the nurses allowed me. I wanted to plant my Mommy feet firmly, and I wanted all to know I was here for no one but my son. I was pumping breast milk every 3 hours 24 hours a day. People often asked me how I could do this and I always explained that if my son was at home I would be doing the same thing. If my son can fight to survive the least I could do was supply him with my physical nourishment as an aid.

Over the next several weeks we watched Alexander's daily weight gain and celebrated with a huge sign over his incubator when we finally reached 4 pounds. We cheered as he began to loose tubes, wires, and IV's. We cried when we had minor set backs like finding he was allergic to the weight gainer drug, and with each apnea, bradycardia, or tachycardia spell. We bonded and found strength from the other families who were struggling having to leave their babies each night as well. Alex had his first sponge bath in a hospital sink with a warm bright light over him. While nurses stood over Rick's and my shoulder helping to guide and wash our tiny baby. He was moved out of an isolette and into his first set of clothing and a bassinet where he learned to maintain his own body heat. Soon Alex was learning to suck, swallow and breathe all at the same time, allowing us to try breast feeding for the first time.


After 32 days in the NICU, on December 23rd Rick and I were able to bring our infant son Alexander home! Weighing just 4 pounds 4 ounces he appeared lost in his car seat. He came home on a heart monitor which remained for the next 4 months. Over the next several months we continued to visit many different specialists. We also went in weekly for weight checks. Alex had shown his fighting spirit. Alex has beaten the odds. Rick and I thank God daily for blessing us with our little miracle baby. God chose us as Alexander's parents. God knew that even through all our periods of self doubt that we were the ones who would provide a wonderful future for this miracle child. To know Alex is to love him. His smile, humor, and love will light up the room. Alexander will always be a preemie but he has also proven himself to be a survivor.

4 comments:

Ana said...

Martha, I read this on the board this morning and it made me cry. It is so beautifuly written and I admire your strength and faith so much!

M said...

That was a pheonomenal story. I remember spending time in the NIC unit at Texas Children's Hospital here in Houston with Owen when he was eight days old. It was the most difficult, yet amazing experience. The doctors and nurses were really helpful and kind.

Emily said...

Martha!! Lisa told me I needed to hear Alex's birth story, but I had NO idea how badly. I'm so glad I stumbled upon this tonight. Wow. What an amazing, awesome, phenomenal testament to God's power and faithfulness! How cool that our two NICU miracles were under the same roof! God's good like that. We look forward to playing with you guys again soon. God bless you. And you're right. God did choose you to be Alex's mother. Way to go, God. :)

Adam said...

I would love to post your site on ours if it is okay with you. Please share our story on yours too. It is very similar to yours. Please take a look...(www.KayleighAnneFreeman.blogspot.com)

God Bless,

The Freemans :)