Tuesday, April 7, 2015

April 7 - Dear Nicholas Sparks (Guest Blogger Jessie May)

Dear Mr. Sparks,

I'm Jessie, mother of Madeline Adell May born January 3rd 2003. I had Adell when I was 19 years old. My husband (Adam) and I found out about Adell's CDH at about 5 months gestation. We had a routine ultrasound and were then sent to a specialist in Indianapolis, IN. We had an amniocentesis done because they thought that the baby also had Downs Syndrome. That appointment was miserable. They told us that it was a left-sided CDH and the intestines, spleen and stomach were in the baby's chest cavity. We both cried so much and all I could think about was how I was going to get through this and tell our families. The next four months went by so slow. The specialist appointments seemed so pointless that I considered not going. A month before the baby was born we went on a tour of the hospital and met with the surgeon that would be repairing Adell's hernia. It was completely depressing, all I could think about was having to bury a baby. The surgeon was very honest and gave us some harsh statistics and facts. I was induced about 10 days early and gave birth to a 5lb 8oz baby girl. I barely saw her as they handed her from person to person into the other room. An hour later when we finally got to see her I remember walking in the NICU and seeing all of the babies. Some of them were small, others had lights on them and some where on oxygen. But none of those babies could have prepared me for what I would see when I saw my baby. I kept saying there is no way that this baby is mine. I wanted one that had lights on it or maybe oxygen tubes but not all the stuff that was attached to my baby. She had pic lines, IV's in her naval, a ventilator tube, Nitrous tanks, suction tubes and so much more. Instead of a regular ventilator, Adell was on an Oscillator which made her stomach and chest rise and fall rapidly, it looked so painful and it was loud. We didn't touch her, and to be honest I didn't even want to at that moment, I was too afraid. Everything stimulated her, noise, lights, touching her, and even talking. The next day they told us that Adell also had a heart defect (co-archtation of the aorta) that needs to be repaired. She did well and at 7 days old they switched her from the oscillator to the regular ventilator. On day 8 they took her into a 5 hour surgery with two doctors. The heart surgeon put her on her stomach and repaired her heart through her back under her shoulder blade. Then they flipped her over and the other surgeon repaired her hernia. We were blessed she had enough diaphragm to stretch without using anything synthetic. Although he didn't have to use anything synthetic, Adell's stomach muscles were stretched to much and the surgeon could only put skin back together. So the surgical sight was very large and thick and her organs made her stomach bulge out to the side. After surgery the doctors explained to us what they call the honey-moon period, were the babies look good and then have a turn for the worst a few days later. She moved to the PICU for recovery. She did so awesome. She was in a lot of pain from her chest tube, suction, and surgical sight. I can't imagine the pain she was in. She had a lot of edema and swelling. When they would adjust her head the fluid would shift. It really bothered me and I had a tough time. I would see her tears, her face and body cry, but I could not hear it. After recovery in the PICU they moved us back down to the NICU on Jan. 14th. Through all of this Adell never went on ECMO. Three days later they decided to take her off the ventilator, I was so nervous. As soon as that tube was out I heard her cry, she was very horse, upset and would not calm down. So they gave her sedation and she fell asleep. A few minutes later she was blue and not breathing. The pulminology team had to resuscitate her and re-intibate her. So again I was upset and we had a big set back. Adell was back on the ventilator. I kept thinking that I did not want her to have to come home with a trach or a g-tube. Finally they gave her some breast milk through a feeding tube through her mouth, 5 cc at a time. On Jan 23rd they tried again taking Adell off the ventilator. This time it worked and she stayed off. This was also the first day that we got to hold Adell. The next day a baby boy was beside Adell with a CDH. It made me fell helpless, he had just been born. He was doing poorly and they shut down the NICU to put him on ECMO to try to save his life. I think he hemorrhaged and then died. I never saw his parents but my heart ached for them. The statistics proved to be true and at that moment I began counting every single blessing and accomplishment that we had. On Jan. 25th we began breastfeeding. I was a first-time mom trying to breastfeed a sick baby in the NICU behind a small screen. But I was so happy to have the chance to try. Breastfeeding completely wore out Adell. We would watch her stats and sometimes her heart rate and oxygen levels would drop while she was trying to eat. Before the alarms would go off, my husband and I would pull off her monitors so that the nurses wouldn't run over and record her set backs. Then we would set her up and rub her back to stimulate her to start breathing again. We knew it was wrong but we just wanted to work with her ourselves. Breastfeeding was just too hard for Adell. I tried everyday and we also gave her bottles. The nurse taught me a few tricks on getting her to take her entire two ounces of breast milk. On Feb 10th she was weened her of all of the morphine and pain killers and was moved to the Grad-unit. We spent five days there and on valentine's night Adell and I got to spend the night alone in a room. It was the very first time I felt like a real mom. Adell had to drink all of her bottles if we wanted to be able to come home the next day.It was a lot of pressure on the both of us. I forced every bit of the 2oz bottles down Adell. The next day we did the paper work to check out. The doctor on call told me that she didn't think it was a good idea to take Adell home and she thought that we would be back within a couple of days. We did not listen. Instead we took her home on Feb 15th. Adell came home without a trache, feeding tube, or any meds. At three months old we had to take her to the emergency room for breathing difficulty. Her left lung is underdeveloped and to this day she still gets out of breath easily. She was put on breathing treatments and still does them occasionally. We saw a few specialist for eating because that seems to be Adell's only problem. She has never wanted to eat. As an infant she never took more than 2oz of formula at a time. None of the specialist suggestions worked. She just doesn't require a lot of food. So we always set aside a certain amount that she has to eat and drink before she can get down from the table. She is very defensive about her size. She does not like to be called tiny or small and she will let you know that she is big. Considering her start at life and her eating issues she has not been a sickly child she is very resilient At one year old she weighed 14lbs. She was a little slow at meeting the milestones of a baby. She crawled two weeks after her first birthday and walked two weeks after that. She is now going on 4 years old and weighs 24lbs. We have a son born in Feb. 06. He is 9 months old and weighs 23lbs. He is almost bigger than her. We no longer go to any specialist. Her heart is fine. At some point she might need cosmetic surgery to repair her stomach and the bulge that sticks out, although I am paschal to it and it doesn't bother her. Another issue we have found out is that Adell needs glasses and cannot see very well. I don't know if this has anything to do with her start in life but I am curious to know. Adell is an extremely strong-willed child and perhaps that is why she did so well. She is very opinionated and can remember anything. She knows what she wants and is determined to do it. We are so in love with her, our lives would be so boring without her. Thank you for letting me share. We are so proud of Adell!

Written by Adell’s mom, Jessie May (Indiana)

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