I had just turned 20 years old when I found out I was pregnant with Lily. To say she was our surprise baby is to put it lightly! The pregnancy I had was stressful to say the least. Her Dad, my boyfriend at the time (now husband) and I had a lot on our plates with money issues, jobs, me finishing college (I was a SPED major at the time) and the fear of having a little child to be responsible for! The night of Thursday, July 6, 2006 I was 7 1/2 months pregnant with Lily, and woke up with chest pains so bad I thought I was having a heart attack. I immediately called my midwife who at the time was going to deliver her. She treated me like a child, and told me to take a bath and go to bed and that it was heart burn and I would be fine. Any expecting mother in her 7th month can tell you straight away what heart burn is like, and I knew it was not heart burn. So against my doctor's advice Jimmy (Lily's Dad) took me straight to the hospital. They gave me some morphine for the pain, and an ultrasound. The midwife told me, "The baby looks small," and at the time, I was too naive to really understand the repercussions of that statement. She also told me that I had had a gallbladder attack and to go home on bed-rest until Monday and eat a "high calorie, low fat diet." IMPOSSIBLE! So the following Monday, July 10th 2006, I went back to South Shore Hospital for a non-stress test. This is a test done to monitor the baby's heart beat and see how they respond. Well my peanut failed the test miserably. She was not happy in there! I was given a shot of surfactant, a medicine used to help develop the baby's lungs, and admitted in to the hospital. I knew something was wrong, I could feel it within my body, I just didn't know what.
So, the stay was pretty uneventful, and I was told Wednesday night that I would go home Thursday morning and stay on bed-rest until my due date, which was August 24. Thursday morning however, I woke up with SEVERE chest pains again, this time it was accompanied by a throbbing headache in the back of my head. My blood pressure at the time was through the roof, and I was given bolus after bolus of Magnesium (a medicine that is given to lower blood pressure, as high blood pressure causes seizures) and started on Pitosin (a medicine given to induce labor). The doctor's told me that I had pre-eclampsia and the only way to cure it is so deliver the baby. For those of you unfamiliar with pre-eclampsia, it is a medical condition in which pregnant mothers are basically poisoned by the baby's placenta, the only cure is delivery of the baby. After trying the Pitosin for 5 hours, my liver enzymes started to go all out of whack, and my liver was then shutting down. Delivery had to be done now, and it had to be done by emergency c-section.
On Thursday, July 13, 2006 at 3:04 PM, I gave birth to Lily Gallagher Bowen who was a whopping 3 pounds 5 ounces and 16 inches long. She was here, she was breathing on her own and doing fabulous! She was taken to the NICU where she would have to learn to maintain her body temperature and to cure her jaundice. She was beautiful and the minute I saw her my heart completely melted and I knew I was born to be a Mommy. My baby was going to be fine.... or so we thought.
She stayed in the NICU and Special Care Nursery for 12 days and then came home. Jimmy and I started learning how to take care of Lily, with the help of our super supportive families. She was THE fussiest baby I had ever seen. I cried most nights after hours and hours of trying to get her to stop screaming and just sleep. How could something so little cause so much chaos? I told her pediatrician about it, I got the standard "colicky baby" response and we switched her formula to no avail. Her pediatrician did notice however that her head was slightly flat in the back and wanted her to go to Children's Hospital Boston for a neurology consult to see if they thought she may need a baby helmet to reshape her head.
On January 18, 2007, 6 month old Lily, Jimmy, my mother, Kelly, and Jimmy's mother, Kellie, were all sitting in the waiting room of the neurology room. Lily, who had wonderful head control, suddenly lost all control and her head started flopping. I picked it back up, and it flopped again. Kellie, who was a nurse saw me, ran to find a doctor, yelling "She is having a seizure! She is having a seizure!" A neurologist came out from one of his office, called a code, and immediately took us down to the ER. I knew for sure that day that there was a God and that he was watching me and Lily. What are the chances that we would be in the best children's hospital in the country when Lily had her seizure? We were rushed to the ER where all the doctor's around were trying to evaluate her. They took her blood sugar after feeding her sugar water and realized it was at 43. Normal blood sugars are 70-100, so 42 is quite low. We sat at CHB for days, as the doctor's came up with the diagnosis of hyperinsulinism. Hyperinsulinism is basically the opposite of diabetes. Lily's blood sugars were constantly low and she could not keep them up. Her pancreas was secreting too much insulin (used to lower blood sugar after eating) and was constantly secreting it. She was maintained on a high sugar IV concentrate and 2 different kinds of medicines were given to her to try to keep her pancreas from secreting all that insulin. CHB just didn't have the technology needed to treat Lily. After 8 weeks at CHB, we were transferred by ambulance to Children's Hospital of Philadelphia. They had the leading endocrinologists in the field of hyperinsulinism. But of course, Lily was able to boggle them as well. Her genetic testing came back normal, her PET Scan didn't show hyperinsulinism, but it didn't not show it either. We had a choice; remove 95% of her pancreas and give her a very high chance of being diabetic, or trying to feed her by a feeding tube overnight so that she would never have to go long periods without fasting. We chose the feeding tube and the medicine that seemed to slightly help. We could go home, but there was a catch. They had sent off what is known as a "21 genome chip." This chip tests for 21 different genetic disorders. And to much surprise to everyone, Turner's Syndrome came back.
No comments:
Post a Comment