By Jennifer And Mighty Max Dell, Lyndhurst, Ohio United StatesOnce upon a time, that seems to be the way all fairy tales begin, and this is a fairy tale story. I dreamed upon a star and wished for a happy family. I wished for two little healthy baby boys. Wished is a bit of a strong word, hoped is more like it. Underneath it all lies every mommy's real hope though and that is that she brings home a healthy baby. That was how the dream of Max's pregnancy began. The dream of another healthy child coming to bless our lives. We were blessed on September 17, 2003 with the birth of a healthy baby boy we named Nathaniel Brinton. Nate quickly taught us how much depth a child adds to a family.
PROM at 24 weeks + 4 days. Delivery at 26 weeks + 5 days.
Story added: 2007-03-21
In 2005 we felt ready to try for that fairy tale ending again. Once again we fell pregnant. This time in January. The due date for our new little bundle was October 30th, 2006. I was so happy and ready for this new baby to join us. All that lay ahead was the nine month wait. However, the pregnancy started off with reservation and such a dark feeling of something being wrong. I tried to shake it off but couldn't. I never developed morning sickness, instead I had cramping. An acquaintance had had this too and her OB said it was, "just her symptom of pregnancy."
On March 5th, we had a scare. I had a bleed with some loss of mucous or tissue. Pregnancy symptoms reduced and I was sure I was going to miscarry. My OB set up an ultrasound for March 6th. My heart was so low as I walked into that room. Quickly the sonographer examined me and said, "You have a heartbeat and everything looks fine. I can't find a reason for the bleed." The episode was deemed a threatened abortion. Relieved, I went home and entered into the second trimester with some relief and the common thought, "Now maybe we are safe." I couldn't have been more naieve.
June came with a rounding belly and the obviousness of pregnancy. It also brought our 20 week ultrasound which revealed a healthy, growing baby. Everything was just right. We were very happy and decided not to find out the gender as we had with our first born. The surprise at birth of the gender reveal is exquisite. One of the last big surprises of adult life. Again, we blissfully went home to await the birth of our child.
July came like a lion and on the seventh our world changed forever. We had traveled to my husband's grandparents home in anticipation of welcoming his grandfather home from the hospital. The day consisted of lots of sitting and low physical activity. After we had returned home from the hospital and had dinner I was helping put the dishes in the dishwasher. I had a trickle of fluid that I first throught was incontinence. I went to the bathroom and thought nothing of it. But the trickle was persistent and did not stop. I knew something was wrong and that we were in trouble. We were only 24 weeks and 4 days gestation. We called our OB's weekend service and told the nurse what was happening. She assured us the doctor would call us back. We waited and no call. We called back and she told us the same thing, so again we waited. After forty minutes of no call we went to the emergency room. They verified there that it was indeed amniotic fluid that I was leaking. I was diagnosed with Preterm Premature Rupture of the Membranes, or pProm for short. I was shaking uncontrollably, I knew if the baby was born on that day that his or her chances of survival were next to none. At this point in gestation lung development is just starting.
The ER attempted to call the OB service as the hospital and again, the doctor on call did not return their calls. Finally, around midnight transfer to University Hospitals of Cleveland was arranged. The ER doctors and nurses all commented on the doctor on call's lack of response to their phone calls. Upon arrival, we were taken to Labor and Delivery. Ultrasound was done that confirmed that my Amniotic Fluid Level, or AFI, was next to none. The doctor examining me asked if we wanted to know the sex of our baby. I said if we had to deliver tonight. She said, "I don't think we will have to deliver." That was where my pProm education began. Cultures were taken to determine if infection had caused the pProm. My cervix was examined, and it was long and closed. However, it had been hours since the rupture and the ER doctors had not wanted to irritate the cervix by examining it and induce labor or transmit infection. Infection is one of a pProm victim's top concerns. Infection can be easily transmitted to the baby and once infected labor must be induced to save the mother's and hopefully the baby's life.
Labor did not start for me that night. Since this was so, we were admitted to the antepartum unit of the hospital. I was put on strict bedrest. At first I could only go to the bathroom. No showers. After a few days went by, I was permitted a shower a day. We were instructed that one of two things would occur: 1) I would go into labor on my own or 2) I would be induced at 34 weeks gestation. Induction at 34 weeks is to try to avoid infection or other complications that arise from being without measurable amniotic fluid for long periods of time. We were told that every single day I could hold off labor was critical. I was determined to stay down and do everything I was told to give my little one a chance at life.
I was able to hold off labor for three weeks. On July 28th my labor began naturally. It was very different from my first labor experience. I did not feel very good and spent most of the day sleeping. Around 11 o'clock p.m. I had sporadic contractions, but nothing that could be timed. I tried to sleep. Around 3:00 a.m. I felt pressure in my lower uterus. I called my nurse and she attached us to the contraction machine. She could not locate contractions, but the pressure was increasing for me and finally, contractions were coming. My nurse called a doctor to examine me. Upon digital examination he turned white and said, "We need to get her to the OR STAT. I am touching the baby's head, and he/she is plus two." *With my first delivery I had regular contractions that were five minutes apart when we went to L&D. With this labor, contractions didn't begin to be regular until delivery was imminent.
We were taken to the OR because the OR is attached to the NICU. At 3:26 a.m. our baby boy Max entered the world. He was live, pink and the most beautiful thing I had ever seen. He was rushed to the NICU and we were told we could see him in a few hours.
Meeting Max for the first time was bittersweet. When we walked into his Pod of the NICU, I noticed some screens on wheels in the hallway that made me uneasy. When entered his nursery, we saw a tremendous amount of machinery first, then the wires and tubes, then our tiny, sweet baby nestled in the center of it all. He was so small, 13 inches and two pounds one ounce, but he was perfect. He was crying at the top of his little lungs, and that was music to our ears. Due to lack of amniotic fluid, pProm baby's lungs may not develop into usable lungs. We were extremely fortunate that Max's lungs had developed and that he was using them. Many times pProm babies are born sleeping or still as well. He was on CPAP, a nasal canula that helped to push pressured oxygen into his lungs. Sort of a reminder for the baby to breath. He had a little blue and pink striped cap on his head and the tiniest diaper I had ever seen. He was simply a miniature baby, but so gorgeous and so loved. The nurse gently moved his cap back for us to see that he already had a head full of blond hair. He had Nate's nose already.
It was so overwhelming, neither of us had a camera, and after being up for nearly 24 hours we didn't have the presence of mind to go to the gift store to purchase one. Finally fatigue gave way and we had to go lay down. As we were leaving we told Max, "Good- bye." Max's nurse stopped us and said, "We never say good-bye in the NICU, we always say see you later." Overall, doctors were impressed with Max's first moments. They gave us hope that he would beat the pProm odds. He had survived birth and he had lungs, two miracles had occurred and we were so very fortunate and thankful to be the recipients of those.
That was the beginning of our rollercoaster ride. Later that day the NICU called and said they were putting Max on a ventilator because his oxygen saturation was falling. Of course we agreed. Family was arriving to visit Max. The day was a blur. After family had left, we stayed with Max at the NICU. At some point we decided to head back to the antepartum unit to sleep.
On the morning of Max's second day of life, we were informed that Max had contracted E-Coli sepsis. This is poisoning of the blood and occurs in preemies because their immune systems are not developed. It is very dangerous and one of the worst things that a preemie parent can hear. Our little miracle was very sick. They were administering antibiotics but would not know if they were working for at least 24 hours due to blood cultures. During the day, Max seemed to do as well as he could. That night, however he crashed. The NICU team had to do everything they knew to get him through the night. Max had blood transfusions. Somehow, they were able to stabilize him. He had come as close to death as a person could come. We were told to get some rest, it was very late into the morning of the 3oth.
Upon arrival at the NICU we were met by one of the lead doctors. We were informed that Max was very sick. However, she was cautiously optimistic that he could overcome the sepsis. She had had a preemie who had overcome stalph infection and had indeed been in our shoes. We stayed with Max and he held our fingers. We were able to cradle his little head in one hand and his feet in the other simulating being held. We talked to him and prayed. At some point in that day we were told Max had developed Meningitis. Our world was beginning to crumble. We were told that we would find out on the 31st if the antibiotics were working. Another late night ensued at the NICU, and eventually we slept for a few hours.
On the morning of the 31st, we were told that the antibiotics were not working and the sepsis would continue to spread. Max had also developed a massive intraventricular hemorrhage, or brain bleed in the brain as a result of the meningitis. The NICU Chief told us it was one of the largest he had ever seen in a preemie. One of Max's eyes was swollen shut due to the pressure. We were informed that we would have to make some decisions. Our world changed forever in that moment. Everything we had known, hoped for, and experienced in our lives ceased to exist. Our lives as we knew them ended and a new life path began. The NICU staff rolled over the screens over to give us some privacy with our little one while we were in the Pod.
Eventually we were taken into a little board room. We were presented with our options. We could remove support. We could employ hospice. Our baby was going to die, it was imminent. The hemorrhage was massive, the antibiotics were not working, the sepsis had shut down his bowels. He was on maximum doses of morphine. He was dying before our eyes. He would never be a happy kid running around learning his ABC's. We could not let our baby suffer any more pain. Now I Lay Me Down to Sleep Bereavement Photography was contacted at our request to take pictures of our angel before he had to fly. Every decision you never even consider having to make for a child was thrust at us in a matter of moments. It was all such a blur.
We were put into a small room. Max was wheeled in. I asked if we could hold him and he was placed into my arms. He was still a perfect, little baby, but his color had faded to a sick gray. He was no longer pink, he could no longer cry due to the ventilator. We had contacted our family and were waiting for them to arrive. We sang songs to Max, nursery songs and told him how much we loved him. They were the most precious hours of my life. Swaddled in a blanket with a sea shell on his chest, Max was baptized by Reverend Warren.
Family members arrived and came in to say good-bye to little Max. After everyone had gotten there, we asked them to all come in. I asked them to sing Twinkle, Twinkle, Little Star to Max together. Then, they would all say a final good-bye. It was just Max, my husband and myself. We held him and loved him for a long time after they all left. As we sang Twinkle, Twinkle to him again, he opened one eye and gazed up at us. We were never rushed to move on and were allowed to decide for ourselves. No parent should ever have to make this decision. At 3:16 p.m. on July 31, 2006 Max passed away in my arms. We were able to give Max his first bath and dress him in a light blue outfit with dinosaurs on it. His small body swam in the outfit, even though it was meant for a preemie. On his head he wore the tiny dinosaur cap and in our arms he appeared to be sleeping.
The strength he had to be just be born live amazes me to this day. He was able to live for three days despite being without measurable levels of amniotic fluid for three weeks and being born due to a placental abruption. His lungs had developed enough to support his body for several hours, and had he not contracted sepsis, who knows what feats of life he would have accomplished. He was a miracle, and he was ours. Why God sent this miracle to us, we will not know in our lives. Why the evils of the earth had to take his life away we will also never know. But someday, we will all be reunited together and I will never have to say good-bye to my beautiful, blonde haired miracle boy again. We love and miss you everyday Mighty Max. We are so proud of you. The lessons we have learned from you and continue to learn will never be forgotten. Each time we look to the sky we know you are shining down upon our family, smiling, laughing and living.