Wednesday, April 8, 2015

April 8 - Dear Nicholas Sparks (Guest Blogger Michelle McAndrew)

Dear Mr. Sparks,

I found out I was pregnant in late March 2001. As soon as I got the news, I began to worry. We had just bought our home and I had painted for almost 2 weeks straight. I immediately told my doctor, who insisted everything was fine. I began bleeding a few days later. I went in and was told again that this was not completely abnormal. After an ultrasound, I was told everything looked good, 9 weeks and 5 days. I was still worried but I just told myself I already had one child and he was fine – besides birth defects don't happen to people like us. Contrary to my first pregnancy, this one was awful. I had uncontrollable morning sickness, backaches, fatigue and was having trouble gaining weight. This made me think a little less about my initial fears of problems our baby could have. I had my mid-way ultrasound at 19 weeks. I was so excited. I already had a son from a previous relationship and my husband already had a daughter. My husband said he didn't care what we had so long as it was healthy. I agreed on the healthy part but I wanted to give my husband his first son. My husband is adopted and knows nothing about his birth family. I wanted him to have his little boy who would look and act just like him. We got the best news of my entire pregnancy when they said, "little boy, plain as day.....he's not shy.” I believed from that point everything would be fine.

The following week I went to an unscheduled doctor's appointment because I was still sick and I thought I was having contractions. My weight wasn't great and although I thought I was having contractions, there were no signs of labor. We made some small talk and I told her that I was having a boy. That must have sparked her memory because she said, "Oh by the way, I was going to call you. The ultrasound technician sent a very odd report that the left lung doesn't appear to be working." My heart sank. I asked if I did anything wrong and she said this was nothing that I had done. I remember she said this really long diagnosis, but then said, "but don't worry, all his organs are in the right place so it can't be that and it is possibly just a fluke.” She said I was going to go to a bigger hospital for a more detailed ultrasound and more than likely everything would be fine. "Just think of it as another opportunity to see our son." As soon as I got home I looked up "birth defects involving the left lung" and that is when I first learned about CDH. After reading that it is most commonly on the left side and is found more often in boys, I was certain this is what it was. I even found information that a lot of fetuses with this defect had been exposed to paint and paint thinner fumes early in pregnancy. I also found that the mortality rate was very high. My fears were coming true, there was something wrong and it was bad. I found out everything I could about this defect. My husband and I went 2 weeks later and after a 2 hour ultrasound, we were told it was a CCAM (Congenital Cystic Adinomitoid Malformation of the Lung). When the doctor explained the diagnosis, we asked about the CDH. She insisted he had a diaphragm and all organs were in place. She said if it were CDH, she would be discussing abortion. What a relief! The doctors said this defect was very treatable with a lower mortality rate. On the way home, we actually said how glad we were that he had this defect – I mean this was much better than CDH. We picked out his name and always referred to him as Caleb, not just the baby. Caleb had a name and he was going to beat this. I had a follow up appointment 2 weeks later. His condition took a turn for the worse. The CCAM was growing. My son's heart was pushed to the right side and was being crushed and they were worried about hydrops. I was given steroids shots to try to get his lungs developed in case they had to take him early. We toured the NICU and spoke to surgeons. Then, slowly his condition seemed to get better. The CCAM stopped growing. He was getting bigger but the CCAM wasn't. His heart was now in the normal spot. I told my husband just to go to work and I would take friends and relatives to appointments.

Then came the day I asked my husband to go. I don't know why, I just wanted him there. Almost every time I went for check-ups, I would hear someone crying. I felt lucky, our son was going to be okay. The whole time they did the ultrasound, something seemed weird. Normally, the technicians talked to us and even laughed – but this time there was nothing. She left the room and came back with the doctor. The doctor did another scan. She finally said, "I don't know how to tell you this, but your son's heart is being pushed to the right again, we can't find his stomach, his intestines are in his chest, the CCAM is still there and we can't find his diaphragm." Then we cried. A lot of it seems hazy. I remember a lot of surgeons came down and talked to us, they said they could help. Then they talked about other hospitals. It was decided we would go to CHOP (Children's Hospital of Philadelphia). This time I went home and my husband and I found everything we could about CDH. We wrote down all the different treatments he could have and any questions we wanted answers to. Of course, the biggest question was what were his odds of survival? We went down to CHOP 2 days later. I had every test imagined. A 4 hour ultrasound, fetal echocardiogram, fetal MRI – I can't even remember them all. We finally had the diagnosis: CDH on the left side, Broncopulmonary Sequestration on the left side and a displaced left kidney. It seemed to me that his entire left side didn't form correctly. We toured the NICU at CHOP and spoke to a surgeon, Alan Flake. Unlike the surgeons at the last hospital I was at, he had a lot of experience repairing this defect. He assured me he could help our son.

After a discussion with the surgical team, it was agreed that Caleb's only chance was going to be at this hospital so we would come back to Philadelphia in 2 weeks and stay until he was born. While we were there, my husband waited until November 1st and ran out and got me a mother's ring with what would be his birthstone (he waited until then just in case Caleb came early). We were there 3 weeks and then came the big day. On Monday November 12, 2001 with my husband and mother by my side, they started inducing me at 10:30 a.m. and at 2:04 p.m. he was born. We actually had him at the hospital right next door, Hospital of the University of Pennsylvania. As soon as he was born, they took him. My husband got to go into the room and see him before they took him next door, but I had to wait. I knew when he first came out he wasn't breathing because the cord got wrapped around his neck. God, what else could go wrong? My husband came back and told me he was breathing and seemed to be doing okay. We waited until they called and said we could come over. Although I knew what to expect, I was still shocked when I saw all the machines, wires, tubes and I.V.'s. All I wanted was to hold him and I couldn't even do that. Surgery was the next day. We spent all day with him before that. I wanted to see his eyes, but he wouldn't wake up. I wanted to hear him cry, but he couldn't. My aunt came and we all waited together. After almost 4 hours, the surgeon came out. Caleb made it through the surgery.

The next few days we sat and watched as they weaned him off the vent and slowly reduced his pain medication. He was a trooper. His vitals were always steady. On Sunday, they finally removed the vent tube. They warned us that he may need to go back on if his breathing became labored, but he never did. I could finally hold him. He was starting to wake up. I could see his eyes and then I finally heard him cry!!! My husband and I took turns holding him. We were so proud because he was doing better than anyone expected. We decided it was safe enough for us to go home and get our other two children and finally introduce them to their new brother. We made the 4 hour trip home. We called to check on him and got bad news. He got an infection. We returned expecting the worst. They did a spinal tap but could not figure out what the infection was. But he fought this like everything else. Soon he would start learning how to eat. A little trouble at first, so we took N.G. tube feeding classes but after about a week, he figured it out. We had to learn how to give him medications for reflux (Zantac and Reglin). Then came the milk allergy. Blood in his stool, but after switching his formula he was fine within a few days.

Finally, came December 6, 2001 (the day after my birthday). We could take him home!!! I had the best belated birthday present ever and very Merry Christmas to look forward to.

Written by Caleb's mom, Michelle McAndrew (Pennsylvania)

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