Monday, August 31, 2015

August 31 - Dear Nicholas Sparks (Guest Blogger Laura Lewis)

Dear Mr. Sparks,

Hi, my name is Laura Lewis and I first wanted to say thank you for the CHERUBS webpage. It has been a great source of information and then a great source of comfort for me. I just wanted to be able to share our story of Sarah's life.

In April 1999, my husband (Howie) and I found out that we were having our fourth baby. What a surprise!! I think I spent the first couple of hours in shock, I wasn't sure if we would ever have another child, our youngest was almost 5 and I was afraid of the age difference (what a foolish thing to be nervous about!!).

We made our first doctor's appointment and got all of my blood work done, which came back great. I was so nervous. Things just didn't feel right, I was sure something was wrong. At seven weeks, I started spotting, my OB took me in right away, did an ultrasound, and said everything looked fine. Other than that scare, I had a great pregnancy, wasn't sick even for a day (my other pregnancies, I had horrible morning sickness). We set up an appointment for my 18th week ultrasound, my husband took the day off and we took the girls out of school so they could see their baby. I remember being nervous having the girls there, but I didn't know why I felt this way. The ultrasound technician was so friendly, chatting away with the girls, then she started scanning and got very quiet. My husband took the girls to the waiting room and I was taken into my doctor's office, where he told me that our baby had a diaphragmatic hernia. I had no idea what that was, I had never even heard of it before. He told me that it was bad, her liver was up and her heart was pushed all the way over to the right side. He wanted to send me into Boston for an amnio and another ultrasound. We went the next morning where they confirmed what my doctor had told us. The doctor in Boston had said that many people at this point would terminate the pregnancy. I couldn't understand what he was telling me. How could I ever just dismiss my daughter that easily?? There would be no way we would give up that easy!! I went home that night, looking for some sort of an answer and found the CHERUBS website and read that Philadelphia and SF did fetal surgery. So I started looking into both sites, not making any decisions yet, I was having another ultrasound in a week with the head ultrasound doctor. When we went back (thank God we saw this doctor), she knew that there was a surgeon who just came back to Boston after being in SF for 10 years. She set up an appointment for us that very day. We went over and met with Rusty Jennings, soon to be Sarah's surgeon. He told us that Sarah only had a 10% chance to survive this horrible disease. He explained the fetal surgery but told us even if she had it, it didn't guarantee that she would make it, but it brought her chances up to 70%. This was our chance that we were looking for!! There was no way I couldn't do it, I desperately wanted to bring my baby home!!! Howie (my husband) and I had to meet with the ethics committee in Children's because we were the first to have fetal surgery. It took a long week to get their okay but they agreed that it was the right thing to do. I was scheduled to have the surgery at 25 weeks. The surgery went exactly, if not easier, than they had planned. They had placed a clip on Sarah's trachea in hopes that her lungs would fill up with fluid and force them to grow. Now came the waiting part. They put me on all kinds of medicine to keep labor away, they were hoping I would hold out at least ten days. I was allowed to go to my mom's (she was closer to the hospital than I was) after the 10 days. I came back twice a week for an ultrasound and non stress test. On my 4th ultrasound (after 2 weeks of being home) they found that my membranes were starting to separate, it was actually floating around and Sarah was sucking on it (whatever happened to thumbs??). They also found I was polyhydramnious and I was having contractions, so I wasn't allowed to go home. I was devastated!! I knew how upset my girls were going to be and I was so afraid of going into labor, I was only 29 weeks! I was readmitted to the hospital on the Labor and Delivery floor, were I had daily ultrasounds and was monitored 24 hours a day. Things went very quietly for the next two weeks. The nurses there were wonderful, they arranged for my daughters to have a sleepover with me on the second week. It was wonderful to be in the same room, watching them sleep again! I missed them so much, I missed taking care of them and being their Mommy. As they were getting ready to go home, my water broke. They brought me down for an ultrasound right away and decided that I still had quite a bit of fluid and could wait till Tuesday to deliver Sarah. I was so afraid. It was 6 weeks since the fetal surgery, but Sarah was only going to be 31 weeks old.

Tuesday came and they got me ready for Sarah. They were going to deliver her by c-section, but at the same time they had to remove her tracheal clips, so we were both put to sleep. When I woke up they told me that Sarah Christina was born. She was 3 lbs. 15 ozs. and 19 inches long. They told me she was doing well. They had intubated her and she was doing good. I couldn't see Sarah until "I could wiggle my toes". After a little while my ob came to see me, something was wrong, she was crying so I thought the worst. She told me that Sarah had to be put on ECMO, what a relief, I thought her news was going to be so much worse! I didn't realize how bad ECMO was. I was taken down to see Sarah and she was so beautiful!!! She had such small delicate features and looked just like her sisters. I was so happy that she was with us, she was such a fighter! They told us the next day they were going to operate on her hernia and asked if we wanted to have her baptized. I felt as though they were trying to prepare us if she didn't make it. We did have her baptized and then they took her away. The operation again went better than they had expected. When we went to see her after the operation, we saw that they had her x-rays up. They were the strangest things I had ever seen, her abdomen was completely empty, every thing was up in her chest cavity. I don't think I realized how bad Sarah's hernia was until then. Everything went well for almost 2 weeks. She even went through a circuit change without any problems. On day her ninth day they told us that she had a blood clot in the cannula in her neck and it needed to be removed the next day. Again they told us that she may not survive because it was so far into her. We took the girls out of school and went 1st thing the next morning just to be there. It came out without a problem. We decided to take a break with the girls for awhile, try to get some time in with them, it had been a long 2 months, so we took them to the aquarium. After we were there for 20 minutes, the hospital called us and told us that Sarah needed to have surgery to close the ductus in her heart, she was having a problem with fetal circulation which was keeping her on the ECMO. I never expected that to happen, I knew she was having a problem, but never realized how bad it was. We rushed back to the hospital and thankfully they hadn't taken her down yet. We all got to kiss her and beg God not to take her from us. We went into the waiting room and within 1/2 an hour the surgeon was back up telling us how great she did. Another triumph!! They were so sure that was going to solve her problems. They wanted to get her off ECMO because every time they had to do a circuit chance, it would take her at least 3 days to get her stats back to where they were. On her 14th day on ECMO, they made the decision to take her off and put her on an oscillator. She was so fluid overloaded and her kidneys were starting to shut down. It was the best thing they could do for her at that point. She came off just fine but couldn't get rid of all the fluid she had stored. Every time they tried to put a needle into her for another IV, she would leak from that spot for days. Her chest tubes were constantly leaking (she had a total of four chest tubes), but I kept saying that at least we were getting the fluid off somehow. Her kidneys all but stopped working so on Monday, they decided to put her on a dialysis machine. We were finally seeing results and she started looking like a little baby again. Sarah was showing signs of having an infection, but they never could find it. It was very frustrating!! On Sarah's 23rd day, Thursday, she kept making her crying face. There was something the matter, but we didn't know what. They kept giving her morphine to help her with pain, but she kept making that face, like it wasn't really helping. We stayed again that night, so confused as to what was going on. The next morning, Dr. Jennings came in and told us that part of Sarah's bowel had died and burst leaving all sorts of bacteria in her. They immediately did surgery and thought they had flushed away most of the bacteria. We were told that we shouldn't go home that night, that the first 24 hours were the touchiest. We stayed and those 24 hours were great. Sarah had even stopped making her crying face. On the 26th hour, her stats dropped, her o2 levels went all the way down to 65, and her blood gases were horrible. It took them 2 hours to bring her back to where she was. I think that was when I realized that it was going to be her last day with us. The next few hours were okay, I just sat there talking to her, kissing her and holding her hand. Then it happened again. I asked God not to take her from us, I couldn't loose her after all that she fought through. I loved her so much!! I knew after they had fought for an hour that they wouldn't be able to bring her back up. I told Sarah that it was okay, that I loved her so much and that God wanted her home. I have never had to do anything as hard as that and pray that I never have to again.They wanted to try the regular vent to see if she tolerated that any better. I was then allowed to hold Sarah, I had never held her before. She felt so wonderful in my arms, I never wanted to put her down. I held Sarah for a long time, I don't know how long, then she left us. I asked that they take her tubes out so I could finally kiss her on her lips. They were the softest lips I ever felt. I held her for another hour before I could leave her. I went to be with my family while they took the rest of her tubes out and wrapped her in a receiving blanket. I came back and held her for a while longer. She was so tiny. Sarah will be gone 5 weeks today and I can still feel her in my arms.I wanted to write this for her, I want everybody to know about her, what a strong fighter she was. So many times they had thought she would not make it through a particular problem and every time she would prove them wrong. She was a wonderful baby and I miss her so incredibly.I miss holding her little hands, brushing her hair, how she would follow us with her eyes and how she would wiggle her toes when we tickled them. I miss being pregnant with her, how she would kick the ultrasound probe because she was so tired of being poked at. I regret that I will never know what color her eyes would have been and what color hair she would have had. It snowed for the first time yesterday and all I could think about was how Sarah would never be able to play in the snow with her sisters. I know the fetal surgery worked, Sarah's left lung was larger than normal and her right lung was only slightly smaller. I thank God that there is some hope for these little babies and pray they can learn more to save even more babies. Thank you for taking time to read Sarah's story.

Sarah's mom, Laura Lewis (Massachusetts)

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