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Our story starts in April of 1999. My husband, Howie and I decided to take a weekend escape to the mountains of NH to celebrate our 11th anniversary. My sister was kind enough to watch our 3 girls (Ashley, Caitlyn and Shelby) so we could have a little romantic time together.
A month later, while getting ready for Caitlyn's First Communion, I decided that I hadn't felt very well and was going to take a pregnancy test (good timing, huh?). Well, very much to our surprise, it came back positive!! I think I spent the first few 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 bood work done. It all 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 the 18th week ultrasound. Howie took the day off and we took the girls with us so they could see their baby. I remember being scared having the girls there, but I didn't know why I felt this way. The ultrasound tech 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 (CDH). 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. We were told that because there was so much in her chest cavity, that her little lungs wouldn't have any room to develop. 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 easily!!!
I went home that night, looking for some sort of an answer and found the CHERUBS website (a support group for parents dealing with CDH) and read that Philadelphia and San Fransisco 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 of the ultrasound department. 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 trained in SF for many years. She set up an appointment for us that very day. We went over and met with Dr. 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 and I had to meet with the ethics commitee in Boston's Brigham and Women's Hospital before the surgery was able to be done. We would be the first to have fetal surgery done in Boston so they wanted to be sure we knew exactly what was to happen. It took a long three weeks 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. Dr. Jennings 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 meds to keep labor away. They were hoping labor would hold out at least ten days. After two weeks, I was allowed to go to my Mom and Dad's house (they were closer to Boston than I was). I came back twice a weeks for an ultrasound and a 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 (too much amniotic fluid) 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.
During that time, I got to know my Sarah so very well. I knew her better at that time than I had known any of my girls. I remeber not being allowed to rub my belly (rub Sarah) because it could cause contractions...that made me CRAZY!! I so wanted to be able to touch and feel her with my hands. I remember how much Sarah HATED the ultrasounds and monitoring. She was so smart...she learned how to kick or push away the probes and could hide from the monitoring. The nurses would sit on my bed (sometimes for 1/2 an hour) just trying to monitor Sarah's heartbeat~she certainly kept them on their toes!! She wanted peace and quiet and if she wasn't going to get it, she wasn't going to make their jobs easy!!!
The nurses at Brigham and Women's Hospital 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 the next day 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 until 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 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. What a big girl for 31 weeks!!!!!! They had intubated her and she was doing well. I couldn't see Sarah until "I could wiggle my toes". A few minutes later, my OB (my earthly angel...she was a Godsend to me through this) came to see me, something was wrong, she was crying so I thought the worst. She told me that Sarah had to be placed on ECMO (a machine that takes over for the heart/lungs, so they have a chance to rest...it's always used as a last resort). 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 (they all have the same little button nose!). I was so happy that she was with us, she was such a fighter!!!!!
The day after Sarah's birth, she was to have the repair done on her hernia. Gene (Sarah's wonderful primary nurse, who was to be her good luck charm in all her surgeries, he wasn't with her for her last surgery) asked if we wanted Sarah baptized. I thought they were preparing us for her leaving. Father Mark came in and 2 minutes later, Howie and the girls came running in....we all watched and prayed as she was baptized.
They came and took my baby to the OR...I was so afraid...I didn't know how well she would do. The operation, again, went better than they had expected. When we went to see her after, we saw that they had put her x-rays up (the ones before the hernia repair). They were the strangest things I had ever seen, her abdomen was completely empty, everything was up in her chest cavity. I don't think I realized how bad Sarah's hernia was until then. Everything went well that first week (her honeymoon period). On her ninth day, they told us that she had a blood clot in the cannula in her neck (where the ECMO was attached) and it needed to be removed the next day. Again, they told us that she may not survive because t was so far into her. We took the girls out of school and went first thing the next morning, to be there before they did it. It came out without a problem. We decided to take a break with the girls for a while, try to get some time in with them, it had been a long 2 months, so we took them to the aqarium. After we were there for 20 minutes, the hospital called us and told us that Sarah needed to have another surgery, this one to close the ductus in her heart, she was having a problem with fetal circulations which was keeping her on 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 foom 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 everytime they had to do a circuit change, it would take her at least 3 days to get her sats back to where they were supposed to be. On her 14th day on ECMO, they made the decision to take her off and put her on an oscillator. She was so fluid overloeaded 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 the fluid she had stored. Everytime 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 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! On the 26th hour, her sats 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 was was. I think that is when I realized that is was going to be her last day with us. The next few hours were ok, I just sat there talking to her, kissing her and hold 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 very 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 ok, 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 my 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 had ever felt. I held her for a long time, then let my parents and sisters say goodbye. I held her for another hour before I could leave her. I went to be with my family in the quiet room 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!!!!
Today is Sarah's 1st birthday...I still feel so empty and lonely for her. But she is my little hero, my inspiration...I know I can be strong because she was. And I know, one day, I will be with my baby for all of eternity and I'll NEVER put her down!!!!! 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 everytime 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, that I'll never see her take her first steps or hear her first words or even her first cry.
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.
I love you, my precious darling!!!!!!!! I miss you more than words could ever say!!!! You will live forever in all of our hearts!!!!!!!!!!!
Four years have passed since I last saw you, since I kissed you, my love. Never could I have imagined missing someone so intensely. At times it has been almost unbearable, but as time has passed I have learned to live with Sarah’s leaving. One day, I know that I will once again hold her for all of eternity and no one will ever make me put her down again!!
But our lives have gone on…we got pregnant 2 months after Sarah left us and lost our Sweet Pea 5 months to the day we lost Sarah (May 11, 2000). I thought I would never again be allowed to hold one of my babies; that I had done something horrible and this would be my punishment. But six weeks later, I found out that I was once again pregnant. This time we were blessed with a beautiful baby girl whom we named Chloe Christina (Christina after Sarah). She taught me how to smile once again, how to be a mommy to my older girls and that it was ok to be happy. We have also been blessed with our first son, Aidan James Edward (Edward, after my dad). He was born on Sept. 11, 2002 and also showed me that even though that would always be a horrific day in history, that there is still happiness left in the world. He is now 14 months old and is just as wonderful as all of his sisters. I still feel the void Sarah left; I still count heads and know someone is missing, but I have many happy days now.
For those reading Sarah’s story…thank you!!! For those who have lost, I am so completely sorry that you know this pain but some day you will be able to remember and think about your sweet angel with a smile instead of tears. I thank God for Sarah…she’s forever my hero and still amazes me for all that she went through. I hope that I am a stronger and better person for her and that I’ve made her proud.
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