I spent the entire 21 weeks of pregnancy in bed either at home or in the hospital due to massive hemorrhaging as my body tried to miscarry. Our precious survivor Samuel Maxwell was born 17 weeks early at Loma Linda University Medical Center in October of 1995. He was HUGE for his gestational age weighing in at one and a half pounds, 11 and 3/4 inches. He was not expected to live. The neonatologist told us that he wished he had some statistics to tell us, but there just weren't any for babies born so early. I've since seen varying statistics that show a survival rate ranging from one to twenty percent. Many hospitals won't even try to save them, nor do they have the necessary equipment. Due to our history of infertility and the minute-to-minute pregnancy, we decided to have them employ drastic measures to try to save our son. We knew that we were facing incredible odds and the high risk of retardation, blindness, deafness, cerebral palsy. . .
The road since his birth has been long and rocky. We spent several months in the NICU and had subsequent rehospitalizations. We have faced many of the "common" preemie issues such as bronchopulmonary dysplasia (BPD), pulmonary edema, pneumothorax, pulmonary interstitial emphysema (PIE), oxygen/vent dependency, intraventricular hemorrhage (two IVH Grade 2), apnea and bradycardia, Candida sepses, inguinal hernia, anemia, hypoalbuminemia, gross and fine motor delays, torticallis et al.
We didn't send out birth announcements for the first couple months of Sammy's life because he was so critical. We just couldn't bear the thought of having to send out birth announcements and then having to tell people later that he was dead. We were also so busy and tired from doing round-the-clock vigil and didn't have the time to take care of details. When Christmas rolled around, Sammy's condition started to improve. He was taken off of the ventilator and learning how to breathe on this own. We thought that we would combine our Christmas greeting with a birth announcement. The idea came to me one night after visiting him in the NICU. Sammy's Great Grandmother, June Adelle Withington Wilshire who was 93 years old at that time, generously created the artwork. Great Grandma June will be celebrating her 103rd birthday on June 1st of this year 2005. She continues to give love and wisdom to her family and we cherish every day we have with her.
In addition to the many "typical" preemie conditions, our son had a much less common consequence of his severe prematurity. He had an immunodeficiency called hypogammaglobulinemia where he made little or no antibodies. He has been a prime target for pathogens and his nemesis is candida. He was isolated for the first two and a half years of his life and has a central thoracic catheter. Our most recent testing has shown a significant increase in his antibody levels. We are optimistic that he is producing an adequate number of antibodies and no longer has to be isolated.
Sammy is now nine and a half years old, and the joy of our lives. These past years have had many challenges and struggles. His immune system is recovering and his antibody levels are in the lower end of the normal range. When he entered kindergarten, the exposure to so many children and germs was a tough shock. He would miss weeks and weeks of school. It seemed that Sam would get sick ten times harder and ten times longer than other children. This has improved through the years, and he has only missed a few days this year in third grade.
Sam had severe problems with reflux (GERD). We tried treating it with medication, but he was still waking up repeatedly every night as the acid would splash up to his thraot. We did a endoscope and a pH study the summer after kindergarten, and found that he already had esophagitis at the age of six which could potentially lead to cancer. We decided that surgery was our best option. He had a Nisson Fundoplication in which the esophagus is wrapped around the stomach. It was a tough surgery and difficult recovery. Sam had a hard time eating anything, and when he entered first grade he was so thin. Even with the surgery we still have to give him antacid everynight, and when he gets upset or nervous we can hear him refluxing. Sam continues to have eating/swallowing issues. He only Sam is a loving, smart, charming boy who is gentle, tender and kind-hearted. He continues to amaze his doctors and all who know him.
We were blessed to have another son five years after Sam using embryos stored cryogenically from the in vitro that gave us Sam. I was bedridden the entire pregnancy, and was admitted to the hospital at 23 weeks facing another premature delivery. We are so thankful that I was able to carry our precious Stuart to near full term. He was born weighing 7 and a half pounds in 2000. He is now five and a half years old and taller than many first graders. He and Sam are five years apart, yet only 5 pounds apart. They both can wear the same size clothes! We just have the raise the hem for Stuart.
We all wear many scars from our experience with prematurity. Sammy's scars are on his neck, chest and groin from surgeries and chest tubes, on his legs from skin breakdown, and has countless scars on his feet, arms and hands from IV's and blood draws. Our scars are on our heart and although they may diminish in time, they will never go away. Sam carries these scars as well
We have been asked countless times "How did you get through it?" The answer to that is two-fold: the absolute grace of God, and the love and support of our family and friends. This continues to be the case as we have struggled through these past three during which Steve had five brain surgeries. Steve had to retire from public school teaching/administration on a medical disability. This has been quite an adjustment to our family. He continues to be a wonderful father to our boys, and a wonderful husband, despite living in tremendous head pain/seizure activity as a result of the brain trauma from the surgeries and a near fatal brain infection in 2005. Our Father in Heaven has continued to provide the grace and support to get through yet another medical crisis.
Please check out our Family Photo Album.
People have also asked us if we would do it again, and fight to save Sam instead of letting him die. Our answer is . . ."in a heartbeat." For that heart that beat against all odds has beautiful blond hair, deep blue eyes and a smile that will light up a room.
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COPYRIGHT 1998 Susan Warren. The original story, pictures, art, isolette cover pattern and tiny feet background contained in the web site are not to be copied which is prohibited by law.