March 12, 2014

Madison's Story

Today I have asked my friend Christina to share the amazing story of Madison with you.  By God's grace and divine intervention we met Christina when Addison was diagnosed with Down Syndrome.  She was an encouragement to our family in the early days when we could hardly see through the dust of a difficult pregnancy, a diagnosis and lots of negative prognosis.  It has been our privilege to come to know this family in the last year and to walk the journey of Down Syndrome together.  Tomorrow, Wednesday March 12th, Madison will be admitted to Children's Hospital for her third open heart surgery.  The risks are very high for this precious one but I believe in God's will Madison will continue to thrive and live a long and full life.  Please keep her in your prayers as she has surgery and begins the long road to recovery.  You can follow her continuing story at Christina's Blog A Life Worth Living
When I was 13 weeks pregnant with Madison, she was diagnosed with Down syndrome. We had gone for the standard prenatal testing the week before and found out there was an elevated risk our baby had a chromosomal condition.  We made the decision to have a Chorionic Villus Sampling (CVS) done to be sure. When we received the diagnosis, the doctor told us that “this was something that could be easily taken care of, at a Planned Parenthood, this early in the pregnancy and we could go on to have other children.” We were also told most women choose to terminate the pregnancy when a Down syndrome diagnosis is confirmed. He proceeded to tell us babies with Down syndrome often have serious heart defects and because we were a young couple with another child to think about, the financial expenses might be more than we were prepared to handle. By the end of our conversation I felt selfish for wanting my daughter. Luckily this little life growing inside of me had already stolen my heart and we were determined to do everything we could to offer both of our children the best life we could. We switched doctors and continued the pregnancy.

We had never known anyone with Down syndrome at this point in our lives and we didn’t know what lay ahead for us. The words of that doctor still hurt to this day. My daughter’s life is not something that could have been “easily taken care of in a Planned Parenthood.” Having an extra chromosome is not a reason to abort a child, but so many mothers receive the same information and they give into the pressure to end their child’s life. I am thankful every day we did not listen to that doctor. I am so thankful we knew our daughter’s life is worth living.

Truth be told, we wanted her, just as she was and we knew together as a family we would make our way through any challenge. We had our 20 week ultrasound on my birthday, a day I will never forget. By this point in my pregnancy I was enjoying the strong kicks from my sweet girl and I was sure going into this sonogram they would find a healthy baby girl. However, because of the high risk of heart defects in children with Down syndrome, they brought in a cardiologist to check her heart. After what felt like hours and a million sonogram pictures later, the cardiologist informed us that our daughter has two large holes between the upper and lower chambers of her heart, also known as an AV Canal defect. He informed us this would require surgery at around 3 months of life to close the holes, but she would go on to lead a typical life. Honestly I was devastated to think of my daughter undergoing open heart surgery at 3 months of age, but I believed this would “fix” everything. When Madison was born in August 2012, all 7lbs and 13oz, we could not be more in love. She was perfect! Her fuzzy little head and big blue eyes captivated us.

However, we barely had the chance to take in our new baby girl before things started to go downhill.  Before we knew it she was in a helicopter being flown to Children’s Hospital in D.C. We later found out Madison was born with three heart defects and would need surgery right away. Madison had also been born with a narrowing in her aorta which needed to be repaired within days of her birth, and a small lower left ventricle that was causing her heart to work much harder than it should.  On her 8th day, Madison underwent heart surgery.  They repaired the narrowing in her aorta and placed a Pulmonary Artery Band to try to lessen the work load on her heart, until she would have her next surgery. I remember holding Madison early that morning before surgery and I will admit I cried as I held her. I wanted to take my beautiful little baby girl and run away, I wanted to go back to when I was pregnant and I was pregnant and I could protect her and I felt her moving at every moment and knew that she was okay, but I knew that this was where she needed to be at this time. Madison made it through her surgery and was making small strides every day to recovery. 

Eventually it was time to start feedings again. As a mother who adores the relationship between a nursing child and mother, I was elated, but in the hospital things are not as natural. Especially when you have a child with a heart condition who often burns more calories than they take in from a feeding. The doctors needed to be able to measure her intake which meant I was only the supplier. However, I would do anything for my kids, so I pumped and they attempted to offer Madison feedings. Madison never really took to the bottle and, as the days went on, the small amount she was taking in, she wasn’t able to keep down. They decided to do an xray with contrast solution, and they discovered Madison also had a Duodenal Web in her intestines. This means there is basically an area in her intestines where a web or blockage, that should have gone away after she was born, stays in place and causes a blockage that prevents food from passing through and this was causing her to vomit. This condition will not correct itself and they would have to surgically cut out and bypass this blockage. Her second surgery took place exactly 5 days after the first. 
Following this surgery Madison started to make better progress with eating and she became an excellent nurser. We went home for the first time as a family of four when Madison was a month old. Life at home was amazing and our family easily adjusted. Our son loves his sister and wants to be sure she is always happy, and she adores him and watches him as he plays. Watching them together makes my heart full. We had a scheduled follow up visit one week after her discharge. Madison seemed so well and I never expected to hear otherwise, but an echocardiogram of her heart revealed she had an effusion, or extra fluid, surrounding her heart. They were also concerned with the fact she had lost some weight in the week since she was home. They told me because of these two issues she would be admitted that day.

The news hit me like a ton of bricks to my chest. I was living this dream at home. I looked at her and she looked perfect, but now she was again struggling. This hospital stay lasted another month and we struggled with her inability to gain weight for most of the admission. In the end, the only way we were going to make it home was to have a Gastrostomy tube, or G- tube, surgically placed into her abdomen so I could provide her with additional calories through breast milk she did not have to work for. This surgery went well and eventually we were home again. We had a lot of follow up visits with various specialists in the months following, but I didn’t mind this at all for the tradeoff of being home as a family.

Life again was wonderful and Madison began making huge strides in her development. She started physical therapy and education, and she was really changing and growing every day. Madison has an amazing ability to make people fall in love with her. People have told me how she leaves a lasting impression on anyone she meets. Madison is the perfect addition to our family. This time at home was bittersweet because we knew Madison would be preparing for another big open heart surgery following the winter holidays. We enjoyed Madison’s first Thanksgiving and Christmas together at home as a family and we did everything in our power to make it special.

In January 2013 Madison returned to Children’s for her second heart surgery. There was a lot of discussion on how to approach her case. In the end they concluded the left side of her heart was not large enough to function properly, so instead of patching the holes they chose to do a Glenn, which is a common surgery for children with HLHS. With a Glenn, a child basically has half of a functioning heart, where blood flows passively from the brain down to the lungs and the heart pumps blood to the body. In the operating room Madison lost a lot of blood and struggled with her oxygen levels. She was not doing well at all and the surgeon decided to leave her chest open for a few days in case they needed to go back in quickly. Her chest stayed open for two whole days following surgery. Seeing your child with an open chest and seeing their tiny heart thumping, changes you as a parent. Life with Madison is precious and every day is a miracle, I have learned to treat it as such. For one week following surgery Madison remained medically paralyzed and sedated with a breathing tube and a machine that breathed for her. She was dependent on those machines for that week to keep her going. We sat by Madison’s bedside talking to her and letting her know how much we love her for that entire week as she lay there unresponsive. I remember her brother Parker sitting on a tall stool next to her bed reading to her. He didn’t mind she didn’t respond, he was just loving his sister the best way he knew how. I will forever cherish that moment and the beauty in their sibling bond.

I remember during this time Madison came out of sedation unexpectedly for a moment. She was motionless, but she looked right into my eyes and I felt like she was looking for strength and telling me she loved me. They came in to sedate her, but I asked if I could have a few moments, as long as she was comfortable. They agreed and I was able to talk to her for almost ten minutes before her blood pressure started to rise and the nurse gave her another dose of sedation medication. After an emotional week Madison was slowly allowed to wake up and lines and tubes were removed one by one each day. One thing I learned through all of this is children with Down syndrome have a higher tolerance for sedation and pain medication and it takes more to keep them comfortable. Because of this and the length of time Madison needed to remain sedated for her body to heal, she became addicted to the pain medications. Seeing your 5 month old baby go through withdrawal symptoms is possibly one of the most difficult things to watch. I remember waking up from a light sleep at around 3am because Madison was vomiting from the withdrawal and she still had her breathing tube. Doctors and nurses rushed into the room and they had to remove the tube for fear she would aspirate. This was by far one of the most emotional moments of my life.

Madison continued to struggle with her oxygen level throughout this hospital admission following surgery, but eventually she was discharged to home once more. Follow up appointments went as expected and the plan was for her to have the next part of the surgical series, which would be the Fontan, at around 18 months – 2 years of age. Unfortunately during a routine echo a blood clot was discovered near her heart. The blood clot was attached, but swinging back and forth with each pump of blood and it was at risk for breaking off and going to the lungs, which would cause difficulty breathing, or to the brain, which could result in a stroke. We were sent to a Hematologist who started Madison on blood thinner injections. She was admitted to the hospital briefly to get her levels to a therapeutic level and the plan was to go home and continue injections twice daily for 6 weeks. I remember first learning I would have to do the injections and feeling awful about the idea of causing her pain twice a day for 6 weeks. However, I would do anything for my daughter’s health and so 84 needles later we followed up with the Hematologist, and to our dismay the size of the clot had not changed. We were hoping all along it would shrink, but it allowed them to conclude the clot was old and most likely the result of a previous surgery. We stopped the injections and planned for the blood clot to be removed with the next surgery.
Addison and Madison
Madison celebrated her first birthday in August 2013 surrounded by friends and family. We went on to participate as team Madison’s Marcher’s in our first Buddy Walk with our Down syndrome advocacy group, F.R.I.E.N.D.S. in September 2013. Madison grew into this wonderful personality who had proven all along she was determined to live this life her way. She has fought very hard for her life and she has taught us strength we never thought we would come to know. As Madison’s first birthday came and went we talked about our wishes and dreams for her and her future. I wish for her that she has the opportunity to live a long fulfilling life. Thanks to the wonderful doctors and nurses at Children’s our daughter has a fighting chance at a longer life. I hope she is happy and doesn’t face the cruelness of our society. I want to create a culture where people can see she is just like any other girl. When people look at our daughter we hope they see Madison, and not a little girl with Down syndrome, because her extra chromosome does not define her, it adds to her pizazz. I want to open doors that allow her to dream and to pursue those dreams freely without judgment. I want her to live this life she has fought so hard for, to the fullest of her ability.

As we prepared for the next surgery Madison had a cardiac catheterization in February 2014. During the Cath they discovered a narrowing in her aortic valve needed to be ballooned and eventually she will have a stent put in to the area to keep it open as her body grows. They also discovered muscle had grown under her aortic valve due to higher pressure in the lower portion of her heart. This muscle is not supposed to be there and needs to be removed during her next surgery. It does not come without risk though. If there is conductive tissue down in the muscle and that is disrupted during surgery, which is very possible, then it may throw off the rhythm of her heart and require a pacemaker. The original plan was to remove the muscle with the Fontan, but following further discussion, they have decided that this would be too much risk for Madison. Instead she will have surgery as planned in March 2014 to remove the muscle and repair the area under the aortic valve and she will have her Fontan surgery approximately one year later. While no one wants to see her face another open heart surgery, this IS the right decision for her. We would never want her to be put at any risk greater than what she can handle.

Our daughter has spent a large part of her first 18 months fighting for her life, and that fight will continue, but there is one thing that I have never been more sure of; Madison’s life is worth living! We knew that long before she was born and every day she proves it to the world. We will never give up fighting for Madison. Our journey has not been easy, but it has been worth it. Our daughter is happy and thriving and she brings so much joy to our lives and those around us every day. She is strong and fights through every surgery because she has the strongest will to live and to be a part of our family. She is smart and observant to the world around her. My son and daughter are inseparable and they adore one another. He isn’t suffering at all by having a sister with Down syndrome and if anything it will make him a more loving and patient person. We have met so many other wonderful families who also have a child with Down syndrome, who have become a part of our extended family. We are so grateful for the people who have stayed by our sides through all of this and loved our daughter for exactly who she is. Our lives are richer because she is a part of our family. Our daughter is the daughter I always dreamed of.

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