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.

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Family Pictures

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Happy Birthday Tristyn!!

Yep, Tristyn will turn 6 at 3:01pm on July 22. Happy Birthday Tris, we love you!

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Check Up

Maddy had her 2 year old checkup yesterday, everything went great! She is 25 pounds, 33.25 inches tall, which puts her around the 25% percentile. This makes her 5 pounds lighter & 2.5 inches shorter than Tristyn was at age 2. Her doctor is very happy that she has caught up with her gross motor development, and her social development and speech are right on track! Her heart and lungs sound great! Way to go Maddy!!

Happy 10th!!!!!!

We Celebrated 10 happy years of Marriage on June 3rd, and we're still going strong!!!!

Hummers & garages don’t mix!

I’m not talking about the Hummer vehicle, I’m talking about humming birds. They are beautiful & fun to watch, but not too smart when they get stuck in the garage. The problem is that when they panic they fly straight up and smack right into the rafters, either hurting themselves, or after 2-3 hours they just become exhausted from not being able to feed. On Monday Tony had to rescue 2 hummger, a male & female Ruby Throated. The male was pretty easy to catch, but the female was a challenge. By the time we caught her she was wrapped up in insulation & exhausted. Tony pick her up and she literally just laid in his hand, so he set her down on the perch of one of our feeders, and she just sat there & drank the nectar for almost 15 minutes, before gaining enough strength to fly away. So, last night we had to rescue another female, this one was easier to catch. We have always had a pretty good hummer population so, I’m not sure why so many are getting stuck in our garage this year, but I guess we’ll be keeping the door closed this summer.

Part of the problem is that they are very curious, and don’t have much fear. They quickly become accustomed to people, If I wear anything red (they love this color) it’s not uncommon for them to swoop down and hover just inches from me to check it out. They are also impatient, when I am changing the feeder they usually are perched just a few feet away waiting. I have heard that some hummers will get so used to people that if they pour some nectar in the palm of their hand the birds will sit and drink it off your hand. I haven’t tried that yet, but I might someday, they are a beautiful bird to see up-close.

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Confused

Two weeks ago on Saturday May 8th, we woke up to 4-5 inches of snow, now this weekend and the rest of the week will have temperatures in the 90’s! I’m so confused!

Happy Heart Day!

Happy heart day Maddy!! Nope, it’s not Valentines Day. 2 years ago today Maddy had open heart surgery to correct her Transposition of the Great Arteries. Basically Dr. Tweddell cut her aorta & pulmonary arteries and re-attached them where they should have been in the first place (almost that is, normally the aorta kind of straddles and weaves around the pulmonary arteries, in Maddy’s heart the pulmonary artery is now straight in front of the aorta). They started prepping her around 10am, and around 11am she officially went on the by-pass machine. Nurse Ann kept giving us updates ever hour or so, and finally around 7pm she came and told us Maddy was off By-pass and the doctor was in the process of closing her chest. So around 8:30pm, after about an 8 hour surgery and several units of blood (Thank you to everyone who donates blood and plasma, and also to all the organ donors!) we were finally allowed into the recovery room to see her.

We praise the Lord for Maddy’s Life!

Happy Birthday Maddy!!!

Yep! Maddy turns 2 years old today, at exactly 10:40pm. Click here to read her birth story. She is such a sweet girl, and is so precious to us. We thank our Lord Jesus for everyday we have with her (we feel this way about Tristyn too!) She is doing so many new things, and is a little spit-fire who can keep us very busy!! She has learned how to climb up and go down Tristyn’s big slide by herself and she is starting up put together some 2-3 word sentences.

Maddy, your Mommy, Daddy and big sister Tristyn are very proud of you, and we love you very much!!

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Happy 95th Grandma!!

Today is my Grandma’s 95th Birthday. Yep, she and Maddy almost share a birthday! It amazes how well she is, I swear she is busier than I am. I hope I can be as happy & healthy as she is, if I get to 95. We will be at her party tomorrow, so Madilyn’s party has been planned for next weekend. Happy Birthday Grandma, we love you!

What’s in your DVD Player?

Right now it’s Star Trek: Voyager, but on any given day you might find MacGyver, Knight Rider, Chips, or Highway to Heaven. We purchased most of these before TV went digital and we only had 4 channels, now that we have digital TV we have 12 channels, which is slightly better, but we still find our selves popping in DVD’s. We seem to be drawn to the shows we watched as kids growing up in the late 70’s, 80’s, and early 90’s. We also enjoy movies, ranging from comedies, romance, action, and thrillers.

I’ve looked into getting cable, but we live in the country, and cable is not available in our area, so we would have to go with a dish network, and that just seems too expensive right now. So we will live with our rabbit ears & dial up internet. We do have cell phones, so we are in the 21st century, but we don’t always have a good signal at our house, we live in a valley! Oh Well! More time to play outside!!!

What’s in your CD player?

Right now it’s Journey’s Greatest Hits. On any given day I might have Christian Rock, Oldies, or 70’s & 80’s Rock (this is probably my favorite and the category where Journey falls into).

In September 2008 we had the great opportunity to travel to Minneapolis to see them live in concert – what a thrill, what a rockin’ concert!! Steve Perry was a great lead singer, not sure why he’s not with the group anymore, but his replacement Arnel Pineda, is very talented, and I think he is a great match for the band. My favorite songs are: "Don't Stop Believin'", "Separate Ways", "Faithfully", "Any Way You Want It", "Open Arms", "Send Her My Love", "Wheel in the Sky", "Who's Crying Now", "Stone In Love", "Lovin,' Touchin,' Squeezin;'", and "Lights" - So basically I like all their hits!! Right now we are in hot pursuit of Tears for Fears tickets, not sure if it will work out though, the nearest concert this year is in Detroit, MI., but this June will be our 10 year anniversary, so you never know what might happen.

Coming up next…. “What’s in your DVD player?”

1 out of 74 in Wisconsin – Why?

Nationally, the incidence of Heart Defects is 1 out of every 125 newborns. But in the state of Wisconsin, the rate is 1 out of every 74 newborns. Why? That’s what everyone wants to know, that’s why the Wisconsin Pediatric Cardiac Registry has been created. Click here to go to their website, and here to see some preliminary results. Maddy is a part of this registry. While she was still in the hospital I filled out the huge packet of paper work. They asked everything ranging from what type of cleaning products you use to the type of industry you work in or live near. They took blood samples from Maddy (before any transfusions), samples of her meconium, and DNA. Also DNA & blood from, Tony, Tristyn & I. I hope that in some small way the information we gave them will help answer some questions.

The national incidence for her particular defect (TGA) is about 2-3 in every 10,000 live births. The most common heart defect is ventricular septal defect (VSD), a hole in the wall dividing the left and right ventricles of the heart. I wonder what the statistics are for these in Wisconsin?

On a side note, Maddy and Tristyn both got their MedicAlert bracelets about 2 weeks ago. I don’t anticipate anything happening with Madilyn’s heart, but once you’re a heart mom you’re always a heart mom. She does have scar tissue where her aorta and pulmonary arteries were reattached, which could create a weak spot, and in an accident you just never know what could happen. As for Tristyn, she doesn’t have any medical conditions, but in an emergency she may have difficulty communicating.

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April is Autism Awareness Month!

Let me start with a little back ground on Tristyn. I had a normal full term pregnancy with Tristyn, I was induced at 42 weeks. Tristyn was a big girl at 9 pounds even and 22 1/4 inches, she had some problems with low blood sugar and needed an IV for about 48 hours, but besides that she was perfectly healthy. She was a wonderful baby, she started smiling at 4 weeks, and sleeping through the night at 8 weeks, she was a very social baby. She was breast fed until almost 6 months old, and never had a problem.

We became concerned about her gross motor skills when we noticed she was way behind other babies her age. She didn't roll until 5 months, sit up - 9 months, crawl 13+ months, walk 18+ months, etc. She was enrolled in the birth to 3 program and they helped her out alot. One of the problems they found was that her joints were hyper flexible. At 2 1/2 years old she was still only using simple words - mom, dad, ball. So we also started speech therapy for her. She graduated from the program at age 3 and we started her in a early education program. This was the best thing we could have done.

We asked the B-3 therapists & her early ed. teachers if she could have Autism, she had several, what we call "quirks" and we were concerned. But we were always reasured that she just had some delays and would catch up. Well, last year at this time we sat down with her teachers, a school psycholigist, and the principal, and she was finally given the diagnosis of high functioning autism, which opened several educational services for her. So the lesson learned here is, if you think something is wrong, but the professionals tell you your child is fine, push it more, you know your child. I don't want to change Tristyn, or pump her full of meds, or do therapies that she is not comfortable with, I love her the way she is!! I just wanted the peace of mind of knowing what was going on.

Now as I mentioned before, she has some "quirks" Just recently she started adding the "zir" sound at the end of some words & sentences, this is very cute, espically when she says "yes" it comes out sounding like "yes sir." She also loves the word actually. Ask her if she likes something and you might get an answer like this "actually, I do "zir." These are some of her harmless quirks, one of the harder ones to deal with stems from her sensory issues, and that is a fear of "loud" public bathrooms - namely bathrooms with automatic toilets & hand dryers at echo. For some reason, this really hurts her ears - it's like torture to her. So if you are ever in a public restroom and hear a child screaming, please be sympathetic, it might be Tristyn.

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Spread the Word to end the Word!!

Please stop using the "R-Word." The R-Word meaning "retarded." Please read Jennie's blog entry at A Little Something Extra For Us. She sums it up better than I ever could. We had the privledge of meeting this family and getting to know them while down in Milwaukee with Maddy. Her son Micah had open heart surgery at the same time as Maddy. Maddy went into surgery around 10:30 and was in the recovery room by around 7:30pm. This family was there before us and was still there when we left, I can only imagine their long day! We were the last two families in the waiting room that evening and so we were able to talk, our pastor was also waiting with us so he said prayers for both Micah and Maddy.

Since then I have been following their blog and have learned so much about faith and how to handle challenges. Since Tristyn has been diagnosed with autism I know were she it comming from when she says my son is NOT a "Down Syndrome baby", he is a child first! Tristyn is not an "Autistic girl" she is a child with autism. I want to make sure Tristyn knows that she is God's child and that she deserves to be treated with respect.

It makes it very hard to let her know just how special she is when people just keep using the "R-Word" So please think before you speak!!



As a side note: please vote for the "Kids With Heart" Nascar design, sponsored by CHD Awareness. Click here to vote. You can vote once everyday!!


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Maddy has pneumonia!!

It's been a long few days here. It started with her comming home early from daycare on Monday with a 101 fever. Since then her fever has yo-yo'd up and down, on Thursday it was back up to 103, so it was time for a doctor visit, because this is no normal cold. Well after some chest x-rays we found out that she had the start of pneumonia, but we caught it early, she just had a small spot on her right lung. So today she is on antibotics and still has a slight fever. The poor girl just feels miserable, but her cough is improving, so I hope in a few days she'll be back to her chipper self!!