July 20th, 2005 I felt as though my life was complete. I had just given birth to our second child, a son, Jackson. Our first child was a girl, Kaitlynn. We were blessed with a boy and a girl. I wanted nothing else just to enjoy my time raising them.
In an effort not to have any more children, my husband and I were using multiple forms of birth control. In the first few days of December 2007, I discovered I was having baby #3.
This was a very difficult time for me. I could not understand why I had been blessed with a 3rd child when I was perfectly content with the 2 children I already had. After getting over the shock and on to the acceptance, we started preparing.
Because I was over 35, I had to go through some additional testing and an extensive ultrasound at the Women’s Institute. Everything appeared normal and we were going to have a girl. Madelynn was born August 6th, 2008. She appeared to be healthy and beautiful and we took her home August 9th, 2008. She was growing, thriving, smiling, and doing all normal newborn baby things. The rest of the story is why she was born to us.
Sunday, October 12th, 2008 I took her to the local Urgent Care because she had a bad cough that was progressively getting worse. She had no fever, runny nose, no other symptoms but the cough really bothered me. The doctor could find nothing wrong with her and was about to send her home when he heard her cough. At that point he did a chest X ray to make sure she did not have any fluid in her lungs. She did not. However he noticed that some thing was not quite right about her heart. He told me he was getting a Pediatric Radiologist to read the film and he would call me at home.
Later that day, he called us back and said there was really something wrong with her heart and he was sending the info to the pediatrician’s office and I was to call them in the morning. At this point all we knew was that her heart was abnormally shaped. It just so happened we had a 2 month check up already scheduled for Tuesday. So when I called the doctor’s office Monday they told me they would have all the details and explain everything to us then.
At that appointment, they told us that Madelynn had a boot shaped heart and she was going to see a cardiologist. She did not exhibit any of the symptoms for her condition so they just made an appointment for Wednesday October 29th. I started researching because I was getting stressed out. Madelynn did not display any of the symptoms that I could find either.
We met with Dr. Sliz and they did and initial echo. Madelynn was BORN with a Corarctation of the Aorta. She had no pulses in her thighs and ankles. The aorta in one section was the size of a pinhole. They have no idea why she was still alive and why she was not born extremely sick, but she wasn’t. Due to the fact that her aorta is built a little bit different and the amount of damage, she needed an extended repair. She also had a hole in her heart that they would fix when they did her open-heart surgery.
We were walked from the Sanger Clinic to the Levine’s Children’s Hospital admitted and hours of tests began for her 7 hour surgery the next day. Dr. Barid did her surgery. He explained everything in great detail, gave us the worse care scenario so that hopefully there would be no surprises and we were prepared. Talk about getting an education on the run. Madelynn’s surgery was a success and Dr. Barid was very pleased that everything went well or better that expected. Nothing will prepare you for the walk in to the CVICU and seeing your child for the first time after surgery. At this point I was pretty numb and I focused on educating myself knowing every detail about Madelynn’s care and what every tube was coming out of her why it was there, how long it would have to stay.
Monday, November 3rd, 2008, Madelynn was moved to a different room in the CVICU. During this move her lung collapsed and it was later discovered she had strep pneumonia. She was VERY sick. She was losing weight and they were unable to start feeding her just yet. CVICU nurses took excellent care of her and slowly but surely she was getting better. Finally, Madelynn was moved to the 8th floor Progressive Care in hopes she could soon go home. We just needed to get her to eat more and on a regular basis and see a continued weight gain.
The amount of drugs she was on was unbelievable and at time difficult to comprehend. However, when Madelynn was discharged November 18th, 2008 she would take a ½ of baby aspirin (now that she was a heart patient), enalapril (blood pressure medicine), baby vitamin (she was very anemic) and infant Tylenol (for her pain, as needed). She was still very weak but able to go home. We were still battling with her eating. It was difficult because she was such a good eater before surgery. It was like bringing her home for the first time all over again.December 3rd, 2008 was a horrible day. I took Madelynn to the doctor. She was getting weekly check ups and weight checks to make sure everything was progressing normally. She was having a hard time keeping food down and had lost 9 oz. in a week. Because she was stable enough, I was allowed to drive her instead of traveling by ambulance back to the hospital.
After talking things over with the Doctor, during this hospital stay it was decided that we should see a pulmunologist. She was having a hard time recovering from the collapsed lung and had some paralysis in her diaphragm. So after a few days, we were able to go home. This time, they were adding albuterol treatments to her list of required drugs to help keep the lungs open and functioning to help the diaphragm get back to it’s normal function. Madelynn continued to battle with the eating and weight gain and almost ended up back in the hospital again. However, we found help in the CDSA. Madelynn has a nutritionist visit her regularly and she now weighs about 14 lbs. There is a Physical Therapist that comes every week to help in he development because she is 7 1/2 months old and cannot crawl or sit up alone.
When therapy started she could barely hold her head up. The therapy is working and she is getting stronger it will just take more time. We are still seeing the pulmunologist regularly but we hope that will soon become less and less. We still go for weekly weight checks, just in the last two weeks she could be plotted on the growth chart again for her weight. Today the only medicine that Madelynn is on is her ½ of baby aspirin everyday and her breathing treatments (albuterol and pulmicort). The baby aspirin she will have for the rest of her life. Sometime down the road we hope the breathing treatments will be no longer but not quite yet.
We have a family web page www.addler99.blogspot.com it helps keep everyone informed and some days proves as a form of therapy.
My name is Chelsea Addler I am Madelynn’s mother and can be reached at firstname.lastname@example.org with any questions.