We went to the Hospital to do another sonogram and another non-stress test. During the sonogram, the tech was very quiet and seemed worried. She called in another tech to verify something, but wouldn't tell us what. She walked me up to the room for the non-stress test. We got into the room and started the non-stress test. We saw that his heart rate was dropping way too much and way too fast. In came a bunch of doctors and nurses and the person that gives you the spinal. They made me put on an oxygen mask and swallow some nasty medicine. They Got the IV ready and made me sign a paper for something. I wasn't really sure what was going on. I was Scared! It still makes me cry to think about his birth. They threw some scrubs at Mark, told him to get them on and fast. Then they pushed me out of the room and just left Mark- As they rushed me to the operating room. I don't think I have ever been so terrified in my entire life. My entire existence was within this moment. They told me as all this was happening that I had no amniotic fluid left, and that Zach's heart rate was dropping too much and he was in fetal distress. They had to do an emergency C-section right then or he would die. They had tried to airlift me to St. Louis to deliver, but the weather there was too bad and they didn't want to wait for an ambulance. They put me on the operating table, made me sit straight up and bend my head down, with my shoulders straight so they could do the spinal. Mark still wasn't there. I started crying so hard, begging for Mark. "I want my husband, please, where's my husband?" They said he could not be in there until I was prepped for surgery. They stuck a needle in my spine- numbing almost my whole body- chest and down. They strapped my arms down to the table and put a curtain in front of me. Mark finally came in. I looked at him and asked, "What are they doing to me?" He said, "I can't tell you that, baby. It's going to be okay." That's when I started shaking even more than I had been since all the doctors bombarded me in the room. As soon as Zach came out, the entire room fell deadly silent. I didn't notice at first, I was concentrating on why I didn't hear my son crying. He finally made a little whimper, not even a real cry. I looked at Mark, he looked at me, and of course, I cried! My baby is alive! I'm crying now, as I write this! The doctor finally came over to my side of that damn sheet. He asked us, "Did you know about the problems?" One doctor answered," No, we didn't know anything." My world kind of just stopped. Like God hit the pause button. He continued to tell us what was wrong, "Your son was born with cleft lip and palate, and he is missing his right arm." --so I am thinking…"Okay- cleft lip- that’s no big, they have those cute little kids on Montel all the time!... what.. wait.. huh? No right arm? Is that for real? I don't get it.. how could it.. but why... Is this real? I feel like I'm in a lifetime movie…" Then they wrapped Zachary in a blanket, brought him over to Mark. They showed Mark what he looked like, and let him leave just that second to go with Zach to the nursery. I didn't get to see him or touch him. That hurts so bad, you have no idea. I don't think I'll ever get over that.
Next, I was wheeled into the recovery room- Mark came in periodically to tell me how cute our little boy was, that he was okay, and what family had came to see him. The clergy guy came in.. I have no idea what he was saying to me, I wasn't listening. I was so cold, they had to keep bringing in tons of blankets from the dryer to wrap all around me. By the time Mark came back down again, he said I looked like an Eskimo! Finally, when I could wiggle my toes, they wheeled me upstairs- right past the nursery where my baby was. Right past it. I got to my room- The first to come in was my older sister, Missy. I'll never forget that. She came in and her first words were.. "Hi, Honey, Do you want me to call Montel?" She made me smile, and I love her so much- she probably doesn't even remember that! But, I do. I started to laugh, but it hurt so badly. Next came everyone else, my mom, my little sister, sister-in-law, mother-in-law, and father-in-law. But not my son. My entire family saw my son- touched my son and took pictures of my son, before I got to do any of that. I am his mother. And I was the last one to see or touch him. You don't get to re-do your child's birth. 5 hours after he was born, they brought him in to see me. Only for about half of a minute before they drove him by ambulance to St. Louis. Just before they took him from me, my little sister, Mandy, grabbed a disposable camera out of my purse. It only had one picture left on it, and she took a picture of me and my son. She'll never know how much that means to me! I couldn't do anything but cry while I held my tiny baby. They took him away and took him to St. Louis. Cardinal Glennon Children's Hospital. Mark and I stayed in the hospital for 2 extra days to make sure I had no complications from the C-section. I just couldn't stop myself from constantly telling Mark how much I truly loved him. Over and over, it's all I could say. I couldn't bear to say that I'm afraid our son will die, or that I'm scared to raise a baby with so many problems. Mark got mad at me for it. He told me that "I love you" was getting on his nerves and asked me to please stop it. What happened to my husband? I wish I knew where exactly things changed. My baby boy was born 5 weeks premature, weighing 3 lbs. 12.5 oz., measuring 18 in. long, with a severe complete bilateral cleft lip and palate, congenital absence of the right arm, and a heart murmur. After he went to St. Louis, I was bombarded with program directors for special needs kids. There I was lying in a hospital bed, doped up on morphine and in horrendous pain, and people were trying to have serious conversations with me! I couldn't tell you who any of them were, what programs they represented, or what the hell I said to them, but it all worked out I guess."
Tiny Zachary stayed in the Neonatal Intensive Care Unit at Cardinal Glennon for the first 2 weeks of his life. His mommy and daddy were at his side as often as the nurses let them be, but mommy held him for every moment she could. Mark and Jenny got a kind of 'crash course' on pediatrics once they got to St. Louis. They spent half an hour every 3 hours learning how to feed their special baby boy. Jenny changed every single diaper, every outfit her little boy spit up on, and even pumped her breast milk every 3 hours so she could bottle feed Zach her breast milk. After many CT scans, blood tests, and puke baths, the brand new family faced another hurdle. At almost 2 weeks old the doctors diagnosed Zachary with hydrocephalus, which is when spinal fluid accumulates and builds pressure against the brain. Jenny's 3 pound baby boy was sent in for his first brain surgery at 2 weeks old. The doctors explained what they were going to do using pictures and books about the temporary VP shunt they were going to put inside her baby's head. Mark stood against the wall and sobbed so loud that all the nurses on the floor looked to see what was going on. They had hoped their newborn would be going home that week, but instead he was going to have brain surgery.
After they placed the tube in his head, the hospital sent Zachary home with his parents. Mark and Jenny were home for almost 2 weeks when they finally got out of the house. Jenny was terrified to be away from her son, but she knew she needed time away, so she let his grandma baby sit. The new parents went to see the concert for Solovus' CD release party where they sang Jenny's favorite song, "That's Okay", and even dedicated it to her and her new family. After the show, Mark and Jenny went to pick up Zachary. As Jenny leaned down to put his shirt on him, she saw that Zachary had liquid coming from the stitches in his head. "Mom, he's leaking!" Jenny yelled to her mother-in-law. "No, he just peed all over the place, it's probably just pee." she answered. "No, mom, it's coming out of his head right now! The stitches are leaking spinal fluid!" Jenny was frantic. Mark did as she asked and called Cardinal Glennon to ask what to do. After 5 minutes, the whole family, mom, dad, grandma, grandpa, and Zach, were back on the road.
Once they got to the emergency room in St. Louis, Zach went in for another CT scan. The attending neurosurgeon stitched his head back up and told the parents to wait until morning to talk to his doctor. The next morning Zachary was sent in for a second brain surgery. This time he was one month old and the VP shunt would be permanent, going from his head and coiling in his stomach lining.
One day Mark and Jenny got a letter in the mail from the hospital. The genetics team of doctors had found something in Zach's blood and requested that they have blood drawn and tested as well. Once the results came back, they knew that all 3 of them had a form of MTHFR. It was a DNA gene mutation that had something to do with folic acid. Mark was the carrier of the gene, having 1 copy of a mutation, Jenny had 2 copies of a different mutation, and Zach had one of each. Jenny and Zachary both began taking vitamin supplements every day to avoid any of the adverse effects the disorder could cause, including stroke, heart problems, and blood clots. Mark's form of the disorder had no effect on his health, but his doctor told him it is still a good idea to take aspirin once a day any way.
Next, I was wheeled into the recovery room- Mark came in periodically to tell me how cute our little boy was, that he was okay, and what family had came to see him. The clergy guy came in.. I have no idea what he was saying to me, I wasn't listening. I was so cold, they had to keep bringing in tons of blankets from the dryer to wrap all around me. By the time Mark came back down again, he said I looked like an Eskimo! Finally, when I could wiggle my toes, they wheeled me upstairs- right past the nursery where my baby was. Right past it. I got to my room- The first to come in was my older sister, Missy. I'll never forget that. She came in and her first words were.. "Hi, Honey, Do you want me to call Montel?" She made me smile, and I love her so much- she probably doesn't even remember that! But, I do. I started to laugh, but it hurt so badly. Next came everyone else, my mom, my little sister, sister-in-law, mother-in-law, and father-in-law. But not my son. My entire family saw my son- touched my son and took pictures of my son, before I got to do any of that. I am his mother. And I was the last one to see or touch him. You don't get to re-do your child's birth. 5 hours after he was born, they brought him in to see me. Only for about half of a minute before they drove him by ambulance to St. Louis. Just before they took him from me, my little sister, Mandy, grabbed a disposable camera out of my purse. It only had one picture left on it, and she took a picture of me and my son. She'll never know how much that means to me! I couldn't do anything but cry while I held my tiny baby. They took him away and took him to St. Louis. Cardinal Glennon Children's Hospital. Mark and I stayed in the hospital for 2 extra days to make sure I had no complications from the C-section. I just couldn't stop myself from constantly telling Mark how much I truly loved him. Over and over, it's all I could say. I couldn't bear to say that I'm afraid our son will die, or that I'm scared to raise a baby with so many problems. Mark got mad at me for it. He told me that "I love you" was getting on his nerves and asked me to please stop it. What happened to my husband? I wish I knew where exactly things changed. My baby boy was born 5 weeks premature, weighing 3 lbs. 12.5 oz., measuring 18 in. long, with a severe complete bilateral cleft lip and palate, congenital absence of the right arm, and a heart murmur. After he went to St. Louis, I was bombarded with program directors for special needs kids. There I was lying in a hospital bed, doped up on morphine and in horrendous pain, and people were trying to have serious conversations with me! I couldn't tell you who any of them were, what programs they represented, or what the hell I said to them, but it all worked out I guess."
Tiny Zachary stayed in the Neonatal Intensive Care Unit at Cardinal Glennon for the first 2 weeks of his life. His mommy and daddy were at his side as often as the nurses let them be, but mommy held him for every moment she could. Mark and Jenny got a kind of 'crash course' on pediatrics once they got to St. Louis. They spent half an hour every 3 hours learning how to feed their special baby boy. Jenny changed every single diaper, every outfit her little boy spit up on, and even pumped her breast milk every 3 hours so she could bottle feed Zach her breast milk. After many CT scans, blood tests, and puke baths, the brand new family faced another hurdle. At almost 2 weeks old the doctors diagnosed Zachary with hydrocephalus, which is when spinal fluid accumulates and builds pressure against the brain. Jenny's 3 pound baby boy was sent in for his first brain surgery at 2 weeks old. The doctors explained what they were going to do using pictures and books about the temporary VP shunt they were going to put inside her baby's head. Mark stood against the wall and sobbed so loud that all the nurses on the floor looked to see what was going on. They had hoped their newborn would be going home that week, but instead he was going to have brain surgery.
After they placed the tube in his head, the hospital sent Zachary home with his parents. Mark and Jenny were home for almost 2 weeks when they finally got out of the house. Jenny was terrified to be away from her son, but she knew she needed time away, so she let his grandma baby sit. The new parents went to see the concert for Solovus' CD release party where they sang Jenny's favorite song, "That's Okay", and even dedicated it to her and her new family. After the show, Mark and Jenny went to pick up Zachary. As Jenny leaned down to put his shirt on him, she saw that Zachary had liquid coming from the stitches in his head. "Mom, he's leaking!" Jenny yelled to her mother-in-law. "No, he just peed all over the place, it's probably just pee." she answered. "No, mom, it's coming out of his head right now! The stitches are leaking spinal fluid!" Jenny was frantic. Mark did as she asked and called Cardinal Glennon to ask what to do. After 5 minutes, the whole family, mom, dad, grandma, grandpa, and Zach, were back on the road.
Once they got to the emergency room in St. Louis, Zach went in for another CT scan. The attending neurosurgeon stitched his head back up and told the parents to wait until morning to talk to his doctor. The next morning Zachary was sent in for a second brain surgery. This time he was one month old and the VP shunt would be permanent, going from his head and coiling in his stomach lining.
One day Mark and Jenny got a letter in the mail from the hospital. The genetics team of doctors had found something in Zach's blood and requested that they have blood drawn and tested as well. Once the results came back, they knew that all 3 of them had a form of MTHFR. It was a DNA gene mutation that had something to do with folic acid. Mark was the carrier of the gene, having 1 copy of a mutation, Jenny had 2 copies of a different mutation, and Zach had one of each. Jenny and Zachary both began taking vitamin supplements every day to avoid any of the adverse effects the disorder could cause, including stroke, heart problems, and blood clots. Mark's form of the disorder had no effect on his health, but his doctor told him it is still a good idea to take aspirin once a day any way.
