Wednesday, August 25, 2010

Madilyn's Heart Journey

I am re-publishing this post to be a part of the Every Heart has a Story blog event.

Click the picture below to read more heart stories.

Madilyn's Heart Journey

Maddy's 1st baby picture.

Madilyn Ann was born at 10:40pm on Thursday, May 1st, 2008. Within a few minutes we knew something was wrong. She was very blue and her breathing & cries were very shallow. I remember the nurse asking my husband to stop taking pictures. I watched the nurses working on her, and over heard one say “Come on baby, stay with us”, it was like watching a bad movie. She was taken to the nursery to have a bunch of tests and we were given the preliminary diagnosis of a congenital heart defect. She would need further tests to find out the extent of her heart defect. At this point we were very scared and all we could do was pray. I had an ultrasound around the 20th week of pregnancy and was told everything looked fine, so all of this came as a sudden shock to us.

Maddy was taken by the Spirit of Marshfield ambulance to St. Joseph’s in Marshfield, she arrived here around 4:00am. Tony left and met Maddy in Marshfield, I wasn’t able to leave the hospital yet, so I had wait. Before she left, the nurses gave us some Polaroid pictures they had taken. I later learned that these are called “just in-case pictures”. In Marshfield she saw Dr. Dyke, he did several tests, ultrasound, echo, etc. and she was officially diagnosed with Transposition of the Great Arteries (TGA).

In a normal heart, oxygen-depleted "blue" blood is pumped from the right side of the heart, through the pulmonary artery, to the lungs where it is oxygenated. The oxygen-rich "red" blood then returns to the left heart, via the pulmonary veins, and is pumped through the aorta to the rest of the body. With TGA, blue blood from the right heart is pumped immediately through the aorta and circulated to the body and the heart itself, bypassing the lungs altogether, while the left heart pumps red blood continuously back into the lungs through the pulmonary artery. In effect, two separate circulatory systems are created. Maddy was born with "Simple" TGA, meaning TGA was the only heart defect. Although it may seem illogical, babies born with "Complex" TGA have a better chance of survival. This is because with they have other defects such as a ASD, VSD (holes in the heart) which allow for mixing of the blood. Maddy did not have this advantage, she had no mixing of the blood and her PDA was very small. Therefore she needed an emergency stent (hole) put in her heart, just to survive long enough to have the surgery to correct her TGA.

A few hours later she was then taken to Children’s Hospital in Milwaukee. The doctors really wanted to air lift her there, but the weather was just too foggy. She arrived in Milwaukee around 9:30am on May 2nd. She immediately had a Balloon Atrial Septostomy, and Dr. Berger put a stent in her heart, she was about 11 hours old at this point. A stent is a man-made hole between the chambers, this allowed her blood to mix. This stabilized her and we were able to wait a few days and let her gain some strength before surgery. This is where I was finally able to catch up with her again. I was discharged from the hospital and we made the 3.5 hr. drive to Milwaukee, not very comfortable only 10 hrs after giving birth! We arrived shortly after her stent was put in. We were later told that the ambulance ride was very tough on her, she coded twice and the attendants were afraid she wasn’t going to make it. The stent made a world of difference, the next time we saw her she was nice and pink. The day after the stent was put in she had an episode of apnea, where she stopped breathing. I have never heard so many alarms and seen so many nurses come running. They determined that this was a side effect of one of the drugs she was on. To keep this from happening again she needed to be put on a CPAP machine. This stands for continuous positive airway pressure. This is a small device that fits over her nose & was held in place by a fabric, helmet like, harness.

Maddy with the CPAP on, after the balloon aterial septostomy, her color is much better.

On Monday May 5th Dr. Tweddell preformed the Arterial Switch Surgery (Jatene procedure) and put the arteries back where they should be, she was 4 days old. It was a long surgery, almost 7 hours, but she came through with flying colors. She recovered very quickly and on May 13, at 12 days old, Maddy was able to come home.

A few hours after surgery

Maddy is now a happy and healthy 2 year old. She has so much energy that she is hard to keep up with, and loves learning new things. She will need life long cardiac care to watch for leaky valves, narrowing arteries at the re-connection sites, and irregular heart beats, but her outlook is great thanks to the wonderful care she received. Tristyn is 6 years old & loves her little sister, the first thing she said was “Mad-o-lin is shiny and new”. Poor Tristyn was a trooper during all of this. She had no idea why she was suddenly abandoned at her grandparents house for almost 2 weeks. She was able to come & visit us once and that was wonderful, because I really missed her. Maddy and her sister Tristyn are both precious blessings from our Lord Jesus. Our family has been blessed with two beautiful daughters and we treasure each day.


Wednesday, August 11, 2010


1 in every 125 babies is born with a heart defect?
What if that one was yours?

1 in every 166 children is diagnosed with some form of Autism? Help us put the puzzle back together!