Wednesday, June 28, 2006

Chambers family heart story.

The joys of pregnancy, oh, I had heard the wonderful tales, morning sickness, weird cravings at 2:00am, etc. I had also been told about the scary things that can happen in pregnancy like placenta previa, pre-eclampsia and host of others. Even with all the people trying to scare me to death about being pregnant, my pregnancy was going great. I never had a bit of morning sickness, and the cravings?? The only craving I had was food! Because everything was going so beautifully, I wasn’t worried about anything, just curious as to whether God had given us a boy or a girl.

At 21 weeks we had the first ultrasound. We did find out we were having a girl and immediately we named her Lydia Faith. Little did we know how much that name would mean. While they checked everything, Lydia kept turning and being so active that the sonographer could not see the bottom of her spine or her heart really well. So she rescheduled us to come back in a couple of days for a repeat ultrasound. We didn’t think it was a big deal, we were just excited that we would be able to see our baby again. At the next visit, the sonographer saw that her spine was okay, but again could not see her heart really well and just blamed it on shadows. She sent us on to see the doctor and he came in and looked at the ultrasound pictures. He kept looking at them and said that with the way Lydia was laying, her heart should have been visible. He decided to go and get the portable machine and take a look himself. When he looked, he also could not see, but blamed it on the poor quality of the machine. He decided to send us home and have us make another appointment in a few days with their best sonographer. While we were at the check out desk, he came and got us. He brought us back to the ultrasound room and explained that he had been mistaken. The lady who had done the ultrasound was their best sonographer. He wanted her to look again, this time with him in the room. What we found out next changed our lives forever. He turned to us and said, “Mr. and Mrs. Chambers, I don’t want to scare you, but we can only see half of a heart.” We were so stunned. I do not think we could ever forget that day and realizing that something may be wrong with our baby. But looking at the pictures, and just having a little knowledge of anatomy, we knew that something was not right. He decided to send us on to a perinatologist at a leading hospital downtown so a diagnosis could be made.

We saw the perinatologist at 23 weeks and he confirmed that Lydia did indeed have half of a heart. He said that her condition was a combination of complex congenital heart defects. We had never even heard of “congenital heart defects”! He went on to explain that Lydia had three complex defects: Transposition of the Great Vessels, Tricuspid Atresia and a large Ventricular Septal Defect. He referred us to a pediatric cardiologist who reviewed the ultrasound. When we met with the cardiologist, he informed us that with her combination of defects she would need three open heart surgeries to repair her heart. Again we were stunned. What was once a possibility was now reality. While our baby inside me squirmed around happily, not having a clue she had a broken heart that needed fixing, our hearts were truly breaking. The thought of our child having to go through so much was overwhelming.

After the discovery that Lydia had congenital heart defects, the name we had given her also took on a whole new meaning. Lydia is a Bible name, meaning “seller of purple.” With Lydia’s heart defects we learned that she would be a “blue baby”, but would actually look purple. Her middle name Faith was just right…only the Lord knew how much faith and trust we would need in Him so He could show himself faithful. Lydia Faith…it was perfect in every way, no matter how much was wrong with her. God had made her perfect, just the way He wanted her to be and had given her such a special name.

At 25 weeks things took another a turn. For no known reason, I went into pre-term labor. My doctors sent me to the hospital and started Magnesium Sulfate to stop labor. They then put me on an ambulance and sent me downtown to the hospital that I was to have Lydia at. Once there in Labor and Delivery, the perinatologist came and saw us. He was very worried and said he wasn’t sure what was going to happen. He also told us to start considering whether to have Lydia vaginally or by a C-section. Either way, Lydia’s chance of survival would be slim, considering how premature she would be in addition to her heart defects. That was a big blow and it seemed like the world just stopped. The thought of losing her was unbearable. A little later they brought in the birth certificate for me to fill out, just in case. Thankfully, the Lord was very gracious to us and allowed the contractions to slow through the night. Finally, the contractions ceased and I was taken off the Magnesium Sulfate and put on breathine. The breathine treatment was successful and was still keeping the contractions to just a few a day. After five days in the hospital, they decided that I was doing fine and could go home on breathine and complete bed rest.

Once home, bed rest did prove to be hard, and even unbearable at times. It was lonely because Steven worked very long hours. During those times, I was left alone to battle with all of my fears about the unknown. Being a first time mother there is always those “fears”, but when God has seen fit to entrust you with a special child with severe health problems, those fears sky rocket. At times I struggled so much with my emotions…I couldn’t understand how God could do this to MY child. I doubted that God even loved me at all. Why couldn’t I just have a normal pregnancy and a healthy baby? I knew all the right answers, but the battle within me was so strong. But then a friend reminded me of Psalm 139. Some of my favorite verses from that chapter are verses 14 and 16. “I will praise thee; for I am fearfully and wonderfully made: marvelous are they works; and that my soul knoweth right well. Thine eyes did see my substance, yet being unperfect; and in they book all my members were written, which in continuance were fashioned, when as yet there was none of them.”,. I committed the chapter to memory, and God’s Word truly brought even more peace to my heart. God was in control. What may be considered “defects” in the medical world, really are not defects. Nothing happens by accident…God made Lydia the way she is for His glory and our good.

The rest of the pregnancy went smoothly but was very busy. There were many, many ultrasounds done by the perinatologist to make sure Lydia was growing and was healthy. It was only the grace of God that allowed me to make it to term with Lydia.

After months of anticipation, Lydia was born at 39 weeks on September 19th, 2003, after 18 hours of labor. She handled the labor great and cried twice as soon as she was born. It was amazing; she was chubby and pink and looked completely healthy, even having apgar scores of 9 and 9. She weighed in at 7lb. 8oz. and was 19 ½ inches long. While the NICU team examined her, she was completely quiet, eyes wide with wonder, taking in the world around her. After her assessment, they took her to the NICU for further evaluation.

I cannot explain to you the importance of knowing that she had congenital heart defects before birth. Lydia “masked” her defects, so to speak. Many babies born with defects, turn blue soon after birth, have labored breathing, and some have heart murmurs. Lydia had NONE of these; she looked and acted perfectly normal. They told us that had we not have known that Lydia had heart defects, she would have gone home like any other baby, and would have gotten gravely ill very quickly. They said by the time we would have discovered her defects, it would have most likely been too late to help her. Praise the Lord for great doctors who discovered her problems!

Lydia did wonderful in the first few days after birth, but she quickly developed signs of congestive heart failure. At five days old, she was transported to the only hospital in the region that operates on babies with congenital heart defects.

The days leading up to her surgery were very emotional and very hard. We held her as much as we could, trying to get to know our sweet baby. We were faced with the knowledge that these few days may be the only days we ever had with our baby and we tried to make the most of them. Going home at night was rough, especially seeing her adorable nursery. We looked at it every day, just hoping that she would one day be able to come home and see it.

Lydia had her first open heart surgery on September 29th, 2003, at ten days old. She had the Damus-Kaye-Stansil procedure along with a Blalock-Toussig shunt. Surgery did not go as well as expected and took a few hours longer than planned. While Lydia was leaving the operating room and going up to the Cardiovascular Recovery Unit, she crashed. She had severe bleeding and almost died. She was very unstable, even requiring the surgeon to open her back up twice in the first 12 hours after surgery. But God was good and gave her the strength to overcome so many obstacles. Seeing her for the first time after surgery was shocking. She was swollen beyond recognition and was gray, like a corpse. She had tubes and wires coming out of everywhere. She was fighting for her life while we fought to hold back our tears and be strong for her. We never took any pictures of her like that because we didn’t need to, the image will forever be seared in our minds. After 5 days, they were finally able to close her chest. Two days later she was moved back to the NICU where she recovered for another two weeks and then was able to come home.

Once home, Lydia still did great. She had the normal struggles like most heart babies with eating and gaining weight though. She was always too tired to eat well and all of her meds made her sick to her stomach. She would eat, and then throw up. Everyday was a battle to get her to eat, but she did, and slowly gained weight. She was such a happy baby, so content no matter what.

At five months old, her cardiologist felt like she needed her second open heart surgery. Her sats had dropped considerably and she was very blue. She had a heart catheterization and surgery was scheduled for two weeks later. On March 8th, 2004 she underwent the Bi-directional Cavopulmonary Shunt procedure and her BT shunt was removed. This surgery went beautifully with no complications and she was home in just 5 days!!

After her second surgery, Lydia was a different person. She ate like crazy and grew very quickly. Soon she looked normal instead of sickly like before the surgery. Since that surgery two and half years ago, she has grown into such a beautiful little girl, very bright and articulate. She is so sweet and always cares about others. Even with all of the poking and prodding she has put up with through the years, she has remained sociable and happy. Lydia has done so well, surpassing all of her doctor’s expectations. She has had relatively few problems in comparison with other heart babies.

A lot has happened in the last two years. Lydia was joined by a sweet baby brother who also is a special child. Having been born 12 weeks premature, Caleb had a slow start to life, but now he is a year old and chasing after Lydia. She is a wonderful big sister…what a blessed family we are to have two miracles!

Now, at almost three years old, her cardiologists feel that it is time for Lydia’s third open heart surgery. She is usually always tired and her oxygen saturations in her blood have been dropping. It’s a sad thing as a parent to see your child unable to play like other children because she tires out so easily. It is also a strange time for us…even though we have known about this surgery since her pregnancy, it has always seemed so far away, and now it is suddenly here. Time sure has passed quickly. She will be having a heart catheterization within the next couple weeks and then her open heart surgery will be scheduled. During this catheterization they most likely will have to do some intervention and open and close different veins in her heart. Her upcoming surgery will be the Fontan procedure, which will allow all of her blood to be oxygenated and she will no longer be blue. It will take place this summer, probably in July or August, and it will be done by the surgeon who performed her previous operations. Hopefully, this will be the last open heart surgery she will ever need.

We are so blessed to have a child like Lydia. She has taught us more than we could have imagined. Congenital heart disease has totally changed our lives, but not in a bad way. We have been fortunate to realize that life is so precious and every day is a gift not to be taken for granted. We are humbled to know that God entrusted us with such a special daughter. We hope that through her story and life, we can touch and encourage somebody else with a broken heart.

1 comment:

Kim Baratz said...

Like you and your husband, my hubby and I did not take pictures of our son, Seth after his surgery. That is an image we will never forget and one that my husband didn't really want our son to see. I pray that things go well when she has her 3rd surgery. Unlike you, we didn't know Seth had a problem before he was born. I felt the same way you did, wondering why God let this happen to MY son, because I don't drink or smoke or do drugs, so why us. I struggled with it too, and still do sometimes, but I know that He didn't "do" anything to us, but help us through what was the worst time of our lives. Seth wil be 4 on Nov 3 and is doing absotuly wonderful. He is very independent, energetic, healthy and happy little boy! Our story has already been on here. My name is Kim Baratz. Good luck and God bless. We will be praying for you, Lydia and the rest of your family.

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