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.

Sincerely,
Sarah's mom, Laura Lewis (Massachusetts)

August 30 - Dear Nicholas Sparks (Guest Blogger Christie Eck)

Dear Mr. Sparks,

I have been trying to write this for 2 years now. Every time I look at my son, Joshua, my heart just melts. This is the story of Joshua Liam Siddhattha Eck.

My OB knew that I had problems with my first two children being preemies, so they kept a close watch on me. I had ultrasounds every other week from 16 weeks on. At 31 weeks, I was put in hospital for pre-term labor and bleeding. I was there for 8 days until my water broke . The hospital I was at, was unable to care for preemies younger than 35 weeks, so I was sent to another hospital near by. It was then that they found the CDH. I knew something was wrong when the tech turned the screen so I couldn't see it. I kept asking what was wrong with my son, but she never answered. It wasn't until several hours later when 2 pediatric surgeons, the hospital social worker and a nurse came into my room with a tray. They told me I needed to have an amnio done because my baby had a CDH. I had no idea what that even was! After the amnio was done, the surgeons told me that my baby would most likely need to be on ECMO and they would have to send me to yet another hospital. I was taken to the University Of Michigan Medical Center, where I had Joshua on February 17, 2001. This move was so sudden, that my husband was not there for the birth of our third child. I didn't even have a chance to look at Joshua after he was born. They just rushed him out so fast! I did, however, hear him cry- something that they never expected him to do!! It was 4½ hours before I was allowed to see him. They told me to be prepared for the worst. I walked in the NICU to see my tiny 4 pound baby hooked up to tubes and wires and he had the ventilator tube that covered his whole face. I was shaking so bad, that they had to help me sit down. I have never seen anything like that before! I just sat there for hours, waiting for something to happen. The doctors told me the first 48 hours were the most crucial and "not to get my hopes up too high." The next day, my husband Dave brought our two older children, Cameron and Madeline down to the hospital to see Joshy. Maddie wouldn't even look at him and Cam just wanted to know why Joshy was sick. We didn't have any answers for him. That night, we were checked into the Ronald McDonald house. The doctor called us at 3:45 that morning to tell us that Joshy had just crashed on full life support and we needed to get down there right away. I went in and the ECMO machine was next to his bassinet. They were about to put him on ECMO but for some reason, he had stabilized. I didn't leave his side for the next 10 hours. He was improving, slowly. He was 9 days old the day he had his first surgery. It seemed to take forever, although it was only 2 hours. He looked so different. His chest no longer made him look like a football player. He looked normal, with the exception of the swollen face and hands that he had. The next 9 days went by with no problems, so we decided to take a day trip home so the kids could play with their own toys and visit with close friends. The 10th day Joshua was removed from the ventilator! After looking at him for 19 days and only being able to touch his little feet, we got to hold him for the first time! I cried so many happy tears that day! The rest of his stay in the NICU was spent trying to teach him to eat. He didn't pick up on that right away. He never wanted to nurse, so I was pumping and we were feeding him by bottle and NG tube. We got to bring Joshua home on April 4! But our story does not end there. Two weeks after we came home, Joshua re-ruptured and needed emergency surgery. He spent a week back in Motts Children's Hospital. Everything seemed fine until the first week of June. He was acting funny and not eating without gagging. We went back to Ann Arbor only to find out he needed yet another surgery. His reflux was so bad, they decided to do a Nissen wrap and remove the pyloric stenosis. Two hours into his surgery, someone came out and told us that Joshy's insides were all fused together and had nothing but scar tissue and that's what was taking his so long. A few days after his surgery, we got some very bad news. Some how during the surgery, 6 inches of his small intestine had died and they had to remove it. By doing this, Joshy ended up with a very serious case of E. Coli. Then, more bad news. He had a fungal infection that had reached his left kidney and his heart. He was given the nasty anti-biotic Amphoterrison or Ampho-terrible, as the nurses liked to call it. He was on that for 21 days. Joshua spent 2 months in the PICU because every time he got better, he ended up sick again. But finally once he was eating by mouth and by his feeding tube without gagging, we got to bring his home! He has had several hospital stays sense then, but nothing like those 4 months! He is still using a nebulizer for his asthma and we found out that he has lung and heart disease. We are taking it one day at a time and every day I thank the stars that I am able to have him with us! Joshy just turned 2 and I can't believe how much he has changed!

Sincerely,
Joshua's mom, Christie Eck (Michigan)

August 29 - Dear Nicholas Sparks

Dear Mr. Sparks,

This is what happens when FedEx will not come to the ship to get the box with our mascot. 

Amazingly, this isn't the first time I've gotten strange looks in the airport because of charity supplies.

Sincerely,

Dawn M. Torrence Williamson

CHERUBS President and Founder

August 28 - Dear Nicholas Sparks (Guest Blogger Donna Easley)

Dear Mr. Sparks,

It all began when we found out that we were pregnant with our second child. We already had a 3-year-old son named Walker so we were ecstatic to be pregnant again. It was a normal pregnancy until the end of July 2006. I felt funny that day at work so I went to the ER that evening and sure enough I had been having contractions every 1-2 minutes apart. The doctor told me I had over done it, put me on medication to stop the labor and sent me home on bed rest. Over the next 2 weeks I had been in and out of the doctors office with continuing contractions. Finally, they did a third ultrasound, but did not know what they were seeing so I was scheduled for a level two ultrasound the following week. I went that day in August by myself thinking that it would be nothing and sent my husband to work. I laid on the table for over an hour while the technician looked, but said nothing. Finally the high risk OB came in and began to look at the ultrasound. Dr. Clark began to explain to me that the baby had a Right Sided Congenital Diaphragmatic Hernia and that the intestines were up in the chest compressing the right lung. My husband immediately came to the doctor's office and Dr. Clark went into detail about how large the hole was and that Alex would more than likely require ECMO. Dr. Clark then put in a phone call to Vanderbilt Children's Hospital since they were the closest to specialize in CDH and ECMO. The next day my husband and I were in Nashville at Vanderbilt meeting with the Neonatologist and Pediatric Surgeon.

Vanderbilt had arranged for our entire family to move to Nashville (5 hours from home) one week before my scheduled induction date. Alex had another plan. Two weeks prior to the induction date I began to have more regular contractions and went to the ER again. After I was assessed it was determined that I need to be flown to Vanderbilt immediately. So the Vanderbilt Children's Hospital airplane came to the tricities, picked me up and flew me to Vanderbilt. They were able to get the labor to stop and I was discharged, but told that I could not leave the Nashville area. My husband, our 3 year old and my mother-in-law joined me the next day and we all lived in Nashville for the next two weeks.

The induction began about 11:00 am on September 28, 06. Everyone was ready for Alex to make his entrance. We had 2 residents, 1 attending, 2 delivery nurses, pediatric surgeon and the entire NICU team waiting and ready. At 4:14 pm Alex decided to grace us with his presence and let out 2 little cries before he was rushed to the side to be stabilized. Once he was intubated the NICU team rolled him by so I could get a quick glimpse before he was rushed to Children's. About one hour later we received a phone call from Alex's surgeon Dr. Yang informing us that Alex would require ECMO and they were going to begin the procedure. Two hours after that Dr. Yang called back to let us know he was okay and they would begin the diaphragm repair. Alex was a right-sided CDH with liver and intestines up and not sure if he had any right lung tissue. Once the procedure was complete Dr. Yang informed us that Alex did have a right lung, but it was very small. Alex spent the next 9 days on ECMO and was finally extubated from the ventilator at 3 weeks old. I so enjoyed getting that first hold that I had been longing for. During the weaning from the vent Alex spent some time on Nitric Oxide due to his pulmonary hypertension. He was then weaned from NO to CPAP and then to oxygen through a nasal cannula. Alex had been at Vanderbilt until December 12, 2006. During this time I would travel the 5 hours every weekend to be with him while my husband stayed with our other son. Once Alex was transferred to Johnson City he began to have these episodes of respiratory distress every day. These delayed us from being able to come home any time soon. So once again we were living in the hospital. After 8 months, many intubations for respiratory distress and many infections later Alex was able to come home. Alex was home for 1 month when the episodes started back up. He was readmitted to the hospital and finally transferred back to Vanderbilt. It was then determined that along with the pulmonary hypertension Alex had tracheomalacia. That is when it was decided that he needed a trach and ventilator. Being on the home vent and having a secure airway is really what has made the difference for Alex. His breathing slowed down incredibly and he was finally able to start gaining weight. Alex came home on August 2, 2007 and has only had a few overnight visits back to the hospital. He still gets medication for the pulmonary hypertension and he still has the trach and vent, but is now able to really develop and act like a toddler (just with all the medical equipment). My husband and I are so proud of the progress that Alex has made and how strong he is. Alex never ceases to amaze us every day.

Sincerely,
Alex's mom, Donna Easley (TN, USA)

August 27 - Dear Nicholas Sparks

Dear Mr. Sparks,

We are busy traveling this week but I wanted to share photos of us raising CDH Awareness in Mexico! 


Sincerely,

Dawn M. Torrence Williamson

CDH Mom Raising Awareness

August 26 - Dear Nicholas Sparks (Guest Bloggers Wayne & Sabrina Durrigan)

Dear Mr. Sparks,

When I was 8 months pregnant they discovered through an ultrasound that our baby had a hole in his diaphragm. The doctors gave us a 15% chance of survival. I had an ultrasound once a week and I was put on the heart monitor too. They did an amniocentesis, but really did not have enough time for all the results to come in. Then 5 days after my due date (November 1, 1989) our son Jeffery was born. He weighed 8 lbs. 2 oz. and 21 ½ inches long. He was born at Westchester Medical Center in Valhalla, NY. I could not see him, because they had to take him right away. In all my ultrasounds they told us that his heart was on the wrong side. Well, when he was born, they yelled out his heart is on the right side, what a relief!!! Jeffery was operated on the following morning and did well; on his 8th day things did not look so good. His bowels were backing up, so they operated again on day 9. Thank God he pulled through. Jeffery was on the respirator for 3 weeks. They told us Jeffery has 1 full right lung and a small left lung, since most of his body parts were up in his chest when he was born, there was no room for his left lung to grow. Once he was off the respirator he turned blue a couple of times. They had a pulmonologist give him treatments. Jeffery was in the neo-natal unit for 30 days. Then he graduated to an intermediate unit for 3 days. Then he came home.

Jeffery was home not even two weeks, when his stomach broke the repair. The doctors decided that Jeffery should get strong before they operate again. He was too weak, so they monitored him. We understood that Jeffery needed to get strong, but then on the other hand it hindered him from being active. He could not crawl, because every time he tried he was in pain. When Jeffery was 1 year old and 5 days they operated. This time they put gortex in him and they had to make a few more repairs. They also discovered he had a hole in his pericardium. The day after his surgery, Jeffery crawled for the first time, what a sight!!!

At 2 years old Jeffery started having problems with his esophagus. He had reflux problems. They put him on medicine, then at 3 years old he had to have an endoscopy. At 4 years old he had a hydrocele, so they operated again. Then at 4 he had another endoscopy and he stayed on medication for his reflux for 2 years.

Jeffery has been on and off medications for his reflux for most of his life. He also uses a nebulizer when he gets colds. At 9 years old he had another endoscopy and another operation to correct cartilage he had protruding out of an area below his chest.

Jeffery has played baseball, basketball and soccer. He does have learning disabilities but he tries real hard at whatever he does. He will be 11 years old November 1, 2000 and we are very proud of him. He has a sister Alyssa who is 5 years old and born very healthy. Alyssa adores her brother. Jeffery also has a very special surgeon who has been in his life since before birth. He now sees Jeffery once a year.

Sincerely,
Jeffery's parents, Wayne & Sabrina Durrigan (Connecticut)

August 25 - Dear Nicholas Sparks

Dear Mr. Sparks,

I'd like to tell you about our Vice-President, Ashley Barry.


I met Ashley at our 2008 CDH Conference, which was held here in Raleigh.  Ashley was very pregnant with her second daughter, Leah, and attended with her husband, Chris, and their cherub, Jessica, who was about 2 or 3 at the time.

Ashley was shy, not ready to talk about her family's CDH journey and so Chris did most of the talking.  I didn't get a chance to know her very well until she joined us as a volunteer and quickly an addition to our Executive Board of Directors.



7 years after we met, I cannot find the right words to say how much she has bought to our charity and to me, personally.   We've undergone extraordinary growth, the division of one board into 3 boards, good days, bad days, conferences, trials and more growth.   A scientist by trade, Ashley is the level-headed one to my big dreams and quick-tempered reign as president.  Often, she's good cop to my bad cop when needed.  She's been my roommate at conferences.  She's let me bring reporters into her home at the last minute to raise awareness.  She puts up with me.  She keeps me guided, keeps the charity on track, quietly works behind the scenes supportive all of our boards and our volunteers and never likes to be recognized.


Which is precisely why she needs to be recognized.  Through divorce and deaths, through dating craziness and personal turmoil... she's been a friend above all.  She is one of most giving people that I know and you will never hear her speak ill of anyone.  I love her like a sister and would not have survived all the changes over the past decade professionally and personally without her. 

These are photos taken in Jamaica during an excursion on the CDH Conference Cruise.  We climbed a waterfall together.  If that doesn't aptly describe our friendship, I don't know what does.

 

 

Except maybe this photo.  That the photographer set us up to do without knowing us.  This is definitely us:

Ashley is one of a kind.   We are all so very lucky to have her.  She is an incredible woman and an amazing CDH mom.

Sincerely,

Dawn M. Torrence Williamson
President of CHERUBS

August 24 - Dear Nicholas Sparks

Dear Mr. Sparks,

Today, I'd like to share with you some photos of after hours and shore days fun that the families had together aboard the 2015 CDH Conference Cruise. 

I think the photos speak for themselves.


Sincerely,

Dawn M. Torrence Williamson

CHERUBS President and Founder

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