Jason, Amy and Elliott Vaughan
My Red-Headed NAIT Miracle Baby
On Sunday, May 17, 2009, two positive pregnancy tests confirmed that my husband and I were expecting our first child. At our 20 week ultrasound, we found out that we were having a boy, which thrilled my husband because he had his “legacy” and thrilled me because we always wanted a boy first so he could be the protective big brother. I had the picture-perfect pregnancy – no morning sickness, bursts of energy, and the glow. I was able to continue teaching until Christmas and had the last month off to rest and prepare for the baby during Christmas vacation. I continued to work out weekly with my personal trainer and to do some walking. I got my To-Do list accomplished – finish nursery, purchase needed items, sterilize bottles, and wash all those tiny sweet clothes in Dreft to prepare for our precious Elliott’s arrival. At each weekly appointment, my blood pressure had been a little high but I only had trace amounts of protein in my urine so there was not too much concern that I was developing preeclampsia. However, I was gaining a lot of weight and major swelling (water retention), so my doctor called on Wednesday January 13 to tell me that he had decided to induce me since I was almost 39 weeks and there was no reason to wait any longer. He said why don’t you meet me at the hospital in an hour. You can imagine my reaction; I was not ready for that! My mind started racing with all the things that needed to be done, people who needed to be called, and my husband’s work schedule, so we agreed for me to go to the hospital to be induced on January 14, 2010 at 8:00am because of my preeclampsia. I was so giddy and so nervous!!!
We arrived the next morning, were admitted, and got situated for a long day. I was hooked up at around 9:00am, and I was already having contractions and did not know it! They started the medicine to increase my labor and continued to check me throughout the day. At around 3:00pm, a nurse came in and broke my water because I was having regular and increasing contractions; however, I still was not dilating. Throughout this process, my blood pressure was being closely monitored and was slowly creeping up but was still being managed. At 10:00pm that night, several nurses rushed into my room and told us that my blood pressure had sky-rocketed (like 200/170 – stroke level) and they began a magnesium drip to hopefully contain my blood pressure (worst experience ever!). By 3:00am the following morning, I had not dilated anymore so we elected to do a cesarean birth because I was not dilating enough and my blood pressure was still too high.
I was scared to death! This was not what I had prepared for – but the magnesium drip was helpful in this situation because I was so out of it that I think it actually helped calm me down. Elliott Thomas Vaughan was born at 4:27am on January 15, 2010, weighing 7 pounds, 9 ounces and measuring 18.5 inches long – and he had red hair. What a surprise! I was so dazed and drugged that the details are hazy for me so here is a clip from my husband, which I love reading from his perspective: “The moment I saw him was incredible. To know that the baby boy God had been creating was finally here was overwhelming. I was so proud to bring him to Amy so she could see her beautiful son. His little cries sounded like a lamb’s baa’s with a hiccup at the end. After some time, the nursery brought Elliott to us, and Amy got to hold him and breastfeed. He was so calm and relaxed. He took to breastfeeding on the spot. What a sweet time for our little family.” The nursery then came to get him to run his tests, get him cleaned up, and circumcise him.The next time the nursery brought him to us, our friends all got to see him. It was then that the doctors told us he was going to the NICU because his blood platelet count was extremely low – at 10,000 platelets per microliter of blood. Healthy counts normally fall between 150,000 to 450,000 platelets per microliter. This was discovered while performing his circumcision; the doctor noticed the petechiae (red or purple spots on the body, caused by a hemorrhage) around his genitals. At that point, things became difficult. My husband would go to visit Elliott alone because I was still recovering from surgery and still on the magnesium drip which meant I could not go down to the NICU. We spent the next day trying to control my blood pressure, and watching hopefully for Elliott’s platelet counts to rise with each blood transfusion (he had 6 total). While in the NICU, he was also receiving IVIG and had an ultrasound that showed he had no ICH. We are really one of the blessed ones!
Another passage from husband’s perspective: “Amy was able to begin recovering quickly. I was amazed at how each time we would get her in and out of bed, she would be able to use more and more of her own strength. Saturday night, she was taken off her magnesium drip and IVs so we immediately went to visit Elliott. The nurse on duty, Jill, was one of our sister-in-law’s friends, and she let Amy kangaroo with Elliott. We both teared up as Elliott slept peacefully on Amy’s chest.” The other amazing thing Jill did was set me up with a hospital breast pump, and I was able to begin pumping milk for Elliott to eat. Saturday night began the scheduled pumping every 3 hours and then transporting it to the NICU. I am so grateful that I was able to still be able to provide for my child at this time – it allowed me to feel like I was contributing somehow and gave me something that I could control in the midst of all the chaos and things that I had no control over.
Sunday brought the same roller coaster ride as Elliott’s platelet levels would spike after each transfusion and dropped again by the next lab work. I was getting stronger and able to walk a little, so we spent more time in the NICU. Monday, we were able to have a conversation with the doctor who delivered Elliott. She was amazing! She is the first person who thought we might have NAIT and is the one who ordered blood to be drawn from my husband and I and have it sent to the Wisconsin Blood Center for testing. Dr. Harper also affirmed God’s control of this pregnancy and birth. She told us that it was a miracle Elliott did not go through the birth canal. The cesarean birth was probably best because the birthing process squishes baby’s heads and bodies. If Elliott had been squished and pressed, he probably would have had some bleeding, and his extremely low platelet count would have made it very dangerous. My husband has such a neat perspective of this: “God’s act of causing the cesarean birth not only was helpful for Elliott, but it allowed Amy the time she needed to recover from her high blood pressure.” During this conversation, we also learned that I was well enough to be discharged so we spent some more time holding Elliott before leaving. Jason, my husband, writes, “Taking my wife home without my son was extremely difficult. Amy cried most of the way home. Being home was good though because she was able to recover easier.” I agree with all of those statements. Leaving the hospital without my baby was the most difficult event of the past 3 days – more than the terror of the magnesium drip, the scares with my blood pressure, the recovering from my surgery, or the waiting game after each blood transfusion for Elliott. However, going home did seem to help my recovery process. I cannot describe the immense joy to take a shower in my own bath! Or to sleep in my own bed! There was just one thing missing – my baby.
We returned on Monday night to visit with Elliott. I was still so upset to not be with my miracle as we returned to the NICU. As I rounded the corner, our friend and my sorority sister, Amanda, was standing there, taking care of Elliott. A wave of comfort and reassurance rushed over me – God was going to care for my child whether I was there or not. I finally was able to breastfeed him again for the first time since our initial time right after birth. He loved it! I did not enjoy it as much – ouch! My husband enjoyed bottle feeding him to finish the meal off after he had finished nursing. My mom got to hold him. It was a joyful, wonderful time.
But that joy was always so reserved because we were so unsure about Elliott’s progress, diagnosis, or future. The questions could consume you. We constantly asked ourselves, “What could be wrong? What are his platelet levels now? How will we get his platelets to level off?” But most importantly, “When would he get to come home?” However, Tuesday added a little pep to our step. My husband and I went to visit Elliott by ourselves without my mom and discovered that Amanda was working again, and before we left, she tipped us off that the doctors were considering removing his IV line, which meant he may get to go home soon. We told her to keep us posted. As we pulled into our driveway from hospital visit, she sent us a text that night at 9:30 that his line was going to be removed the next morning. We kept this info to ourselves because we did not want to give any one false info or a reason to get their hopes up and be disappointed.Needless to say, sleep was not happening Tuesday night because of our excitement. We got up Wednesday morning bright and early. We made sure we were showered and looked presentable for pictures just in case. Jason kept telling me to not get my hopes up because I was just downright giddy – I was probably going to bring home my baby today. I was in a room, pumping milk (my all-consuming task) – when I heard a knock on the door; it was my husband with the news we had been waiting for. Elliott’s platelet levels had finally sustained at 150,000. He was coming home!
About two weeks after bringing Elliott home, I got a phone call from Dr. Harper with our blood test results. The tests confirmed her beliefs, and we were diagnosed with NATP. We are in the 100% category and have the HPA-1a incompatibility as well as an HPA-2b incompatibility. I had no clue what she was telling me. I asked her, “How does this affect future pregnancies?” I will never forget the next words that came out of her mouth. She responded, “I would consider sperm donation or adoption.” That was a punch in the gut! I was just told that the baby I was holding in my arms at that moment would be my only biological child. I sat and rocked him for a long time after hanging up with her – rocked and cried. (Since that conversation and after finding the Yahoo and Facebook groups and hearing many success stories with subsequent pregnancies, we have met with a local MFM and been given the go-ahead to have more children after discussing treatment options with the understanding of the risks, costs, and time restraints.)
Through all of this, Elliott has been a great baby. As a newborn, he seldom cried unless you agitated him by changing his diaper or waking him. Breastfeeding was a breeze – we made it a whole year. He sleeps marvelously – started sleeping through the night at 5 weeks old and has not been up in the middle of the night since. When he is awake, he is calm and attentive. He is so laidback and goes with the flow. He is now 16 months old. His little life is a gift from God. He is walking, talking, teething, filling our days with joy and laughter, smart, and a ham, and he is still our little red-headed NAIT miracle baby.