Blue Babies

Maddie's feet compared to Caden's!!! Blue?!?

"Blue Baby Syndrome" used to be the term for babies born with cyanotic heart disease, like Maddie's. You have probably heard of stories (maybe from your grandparents) that talked of "blue babies" being born and passing away...it's very likely, these kids were born with a cyanotic heart defect and without intervention, the inevitable happened and they died. In these defects, blood pumped to the body has less than the normal amount of oxygen. This causes a condition called cyanosis, which is a blue discoloration of the skin (more purple in my opinion). If cyanosis is mild, it may look like a "ruddy complexion." If it's severe, there's a dark blue discoloration. The degree of cyanosis may vary with age, activity or both. Cynanotic heart defects make up 25% of all CHD's. Here's a few of them: Tetralogy of Fallot, Transposition of the Great Arteries, Tricuspid Atresia, Pulmonary Atresia, Truncus Arteriosus, Total Anomalous Pulmonary Venous Connection, and Hypoplastic Left Heart Syndrome. Maddie's sats (oxygen saturations) are normally around 80. With activity they drop and at rest, they usually perk up a bit. I notice her look bluer when she's working hard to poop, crawling around lots, after she's cried hard and especially when she's cold. A healthy heart's sats are 100 and hopefully after the final repair, the goal is to get her O2 sats in the 90's. This would give her more energy and will be healthier for her!

So here's a little history...in 1944, the first successful surgery was performed at Johns Hopkins Hospital to relieve the blue baby syndrome. Maddie's first surgery, the BT-Shunt (Blalock/Taussig Shunt) is named after the famous docs who pioneered this operation. Here's a great article written about this first surgery. The HBO movie, Something the Lord Made, documents this important piece of history in pediatric cardiology. I highly recommend watching it!

Click on the picture above to read this article...these poor heart mama's and kids! Without their sacrifice, medicine would not be where it's at today and we're sure grateful for this.

More CHD facts

Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease. CHD needs more exposure in the media and overall awareness among the public. Today was Lobby Day for CHD in Washington DC. You can read more about it here.

More CHD facts to share with you...

*In the US, twice as many children die due to CHDs than that of all forms of childhood cancers combined. Yet funding for pediatric cancer research is 5 times higher than for CHD.

*91,000 life years are lost each year in this country due to CHD's.

*More than 50% of all children born with a CHD will require at least one invasive surgery in their lifetime.

*Statistics today show that due to misdiagnosis, lack of knowledge and awareness, and complications of surgery...about 51% of deaths caused by CHD are children under the age of 1 year.

*The cost of inpatient surgery alone for CHDs exceeds $2.2 billion dollars per year.

*The count for open-heart surgeries just on children under fifteen years old is 25,000 annually.

*The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD.

*Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research.

A beautiful poem

It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that she is just going for a visit. She is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. She asks,"Will I be okay with only half of my heart?" Jesus replies,"Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves." -Author Unknown

I HEART heart friends!

Can I just say that I cherish all of the heart families we've met on this journey? Our "Kindred Hearts" list just keeps growing and I have quite the attachment to these heart babies. I've also met some amazing adult CHD survivors who bring so much hope. I've read too many heart blogs and carepages to count (I don't even want to admit this, I'm a bit of a "blog addict/stalker" in my downtime.) But what I've learned through all of my reading is that we are not alone. We share so many of the same fears, frustrations, worries, hopes and dreams for our little ones with special hearts. It's good therapy and cheap too. God has put some pretty amazing people in our life and we've met them through our hospital stays at Children's and through the "blog world" and email. Our paths have crossed because someone has reached out who's been there, it's a great feeling.

Here's a few things that I've learned most heart mom's have in common: 1) we keep a huge stock pile of Purell, 2) we have a keen sense to spotting the sick & germy, 3) we can rattle off our child's weight, sats, heart rate as well as how many milliliters they've eaten in a day, 4) we have watched our child turn too many shades of purple, 5) we have had to hold our child down for countless procedures while trying to comfort them at the same time, 6) we have learned to "let go" of the small stuff, 7) we have had to kiss our little one goodbye then watch them be wheeled into the OR to have their chest cut open, 8) we have had to ask for and accept help more than ever before in our lives, 9) we have learned to be patient and take it a day at a time, 10) we want to give back and help others who are behind us in this journey!

To celebrate this post's title, loving our heart friends, I'd like to share some pictures from the fun weekend Maddie and I had in Seattle with our friends, Susie & Teagan. We hit the big CHD support group meeting, Heart to Heart, at Children's a couple of weekends ago. Since we were at the hospital, we took the opportunity to do a little visiting at the CICU, meeting both Joshua and Karlee's mom's (Leah and Devon). It was great to see them and to be able to chat for a bit. Our nickname, the "sunshine committee". The Cardiac ICU isn't the happiest place to be in; the worry, stress and grief is so evident on almost every parent's face you see. Feelings come rushing back each time I step foot in the train elevator that leads to the ICU, from our days of being there and I only hope that Maddie brings some hope to parents going through those tough times. We also got to visit Ann, one of our favorite nurses, and we brought some "healthy" Krispie Kreme's for the ICU staff as well! The meeting was very informative...Dr. Cohen, chief of Cardiothoracic Surgery as well as Dr. Lewin, chief of Cardiology, joined in to answer questions and speak on behalf of the Heart Center at Children's. It's always interesting to hear the doctor's views yet as a parent, some of the information we hear is tough to swallow. Maddie and Teagan's, as well as all single ventricle kids, staged surgeries are still fairly new procedures so there isn't much history to look at for data and statistics. Thank God they were born in 2008 because 30 years ago, in our part of the country, there was nothing they could have done for them. It was amazing hearing how far the Heart Center has come and we are so proud that Maddie is a patient of their excellent program.

We also enjoyed a fun evening and dinner with more heart friend's, Mimi (Mia's mom) and Jesse (Luke's mom). It's always so great to visit with other heart mom's!!! Here's a few pictures from our great night...the girls even got to meet Mia when we went to pick her mommy up! Of course there was no baby mauling involved... she's doing so wonderful only 2 months post-transplant and she's just so PINK! What a darling, sweet girl and we felt so honored to get to see her (Mimi's idea :O)!





We also had coffee with Ray, our favorite echo gal and friend, which was fun. She's always a blast to be around! So we had a great weekend and the girls were troopers, minus the car ride over and back for Miss Maddie. Poor thing, she's hating the car again. Ugh. Sus and Teags are always so much fun and we can chat for hours. Thanks for the fun weekend girls!

A Miraculous Muscle

I hate to admit this but before Maddie, I thought that the only heart defect a baby could be born with was a hole. Little did I know!!! There are 35 known heart defects. The combination of defects are infinite and many variations are a mix and match of several different lesions. Our daughter falls into this category and is dubbed "complex heart disease" on her chart since she has a few heart defects...it's difficult to understand if one caused another but after reading the book Walk on Water by Michael Ruhlman,
it's a wonder that so many babies are born with functional hearts with all that can go wrong during its development. (Note to other heart mom's: some parts of this book are TOUGH to read. It's taken me a year to get through most of it. I have to read it in bits and pieces or I become too overwhelmed!) Here's a bit from the book that I would like to share about the heart's first stages of development in utero...

From the moment its first cells twinkle into being, cells generated by the embryo's hunger, the heart is a feat of evolutionary genius. Just a couple of weeks past fertilization, these cells will have already formed a tube that pushes blood through the cell cluster. At about a month, this tube performs a critical maneuver: it pretzels, it loops and twists. "That's when it really gets interesting for me, " says surgical fellow Frank Moga. "That's when it starts to show its real complexity, when it makes that turn. It really achieves its three-dimensional beauty." It's also where things can begin to go wrong.

In addition to looping, the nascent heart must also now start to separate within itself into a right side and a left side, and each of those sides must have its distinct incoming and outgoing channels. Sometimes, these outgoing channels-an aorta-pulmonary helix-don't twist all the way, so that the aorta and pulmonary artery emerge from the wrong ventricles (transposition). And sometimes as the single muscular ventricle and the single thin-walled atrium squeeze off to form two of each, the inner wall doesn't quite grow together, leaving a hole between them (septal defect).

At the same time, two wispy valves-drifts of feathery-looking tissue, fine as butterfly's wing- should be forming between the atria and ventricles, as should two other, stiffer, three-flapped valves within the pulmonary artery and aorta. Any of these complex structures within the fetal heart can get stuck or not form at all. And all the while this organ must continue to squeeze nutrients through itself and therefore through the fetus. After four weeks, it's network of arteries has developed all around to feed it: the coronary arteries, which sometimes grow in odd places and occasionally come out of the wrong vessel altogether. As the arteries are developing, the other critical network is likewise taking shape: complex series of specialized muscle cells-cells that transmit electrical impulses-gather in the right atrium, then channel through muscle to another node in the ventricular part of the heart and disperse from there. These cells signal an atrial contraction, forcing blood down into the ventricles; then an electrical charge signals the ventricle to initiate its own contraction, propelling the blood up and out.

That's the heart; it's complete. The little creature growing around it is not even a fetus yet (at 8 weeks old, it's still called an embryo), and this ingenious pump-four chambers, four valves, arteries, veins, and a conduction system-is the size of the head of a pin.

Wow, right!?! Now it makes a little more sense when I read facts like...

• 1 in 100 babies is born with a CHD in the U.S.


• CHD's are the #1 birth defect and #1 cause for birth defect related deaths.


• This year almost 40,000 babies will be born with a CHD and 4,000 of them will not live to see their first birthdays.

Please help spread Congenital Heart Defect awareness...share these facts with those around you and be thankful for that miracle beating inside your chest.

It's CHD Awareness Week!

In honor of Congenital Heart Defect Awareness Week: Feb 7-14, I'm planning to post daily with something "heart" related...so to kick off our week, I'd like to share a testimonial that I was asked to write about Maddie for the American Red Cross. It's being published in their book to let others know the importance of giving blood as well as spreading awareness that lots of babies need blood too! With Maddie's heart surgeries, she was given blood transfusions post-op to help with her counts and to give her a boost for healing. The by-pass machine can also be primed with donor blood prior to being put on heart/lung bypass, so the importance of this is critical with heart surgery patients. About 40,000 units of blood are used every day yet only about 5% of adults, the only ones who are eligible to donate blood, do so. Someone needs blood every three seconds in the United States; that someone is often a heart child. We have learned first-hand what a gift it is. So for most of you, this is a little "recap" of our little sweet'heart'...
I never thought I’d know so much about the human heart, especially what could go wrong with it but when our third child was prenatally diagnosed at 26 weeks with a Congenital Heart Defect (CHD), a new world opened up for us. Our baby’s heart may have been broken but our hearts were shattered that day. We learned that without intervention, she would not survive and we were given three options: termination of the pregnancy, a three-staged surgery, or the comfort care method which was to take our baby home and let her pass away. We were lucky to have the surgical option and chose the three-staged operations route. Our “heart journey” quickly began.

Madison Grace Allred, “Maddie” unexpectedly joined our family on March 13, 2008, arriving a month early by an emergency, crash c-section at the University of Washington Medical Center in Seattle. Her birth was a very scary experience and we all feared the worst with her early arrival, but we quickly learned that our 5 pound baby girl was tough and would overcome any obstacle that came her way! After stabilizing Maddie, she was transferred to Seattle Children’s Hospital Cardiac Intensive Care Unit where her CHD diagnosis was confirmed: Pulmonary Atresia with Intact Ventricular Septum, Ebstein’s Anomaly, Atrial Septum Defect, Patent Ductus Arteriosis and Hypoplastic Right Ventricle. In short, the right side of her heart was severely underdeveloped and simply non-functional. On day 6, Maddie underwent her first open-heart surgery called the BT Shunt which basically created a bypass to get the blood to her lungs for oxygenation since her own anatomy did not suffice. She did fairly well post-op and after spending her first 19 days of life in the hospital, she was discharged and finally able to come home! It was a bitter sweet moment for us. Maddie needed a feeding tube the first few weeks after coming home but finally regained enough strength to orally bottle feed. But we knew that our stays at Children’s were not over…in 4-6 months, she would outgrow the shunt and need another surgery in order to survive.

At exactly 4 months of age, Maddie underwent her second open-heart surgery called the Bi-Directional Glenn. She cruised through her recovery and was home just 5 days after another big heart surgery! With each surgery, she was given blood to help with her counts and help give her healing a boost. Donor blood is also used to prime the bypass machine, so we have learned, first-hand, the importance of giving blood and my husband and I have now become regular blood donors.

Since her Glenn surgery, Maddie has been growing and thriving. She is developmentally on track despite her early birth, hospitalizations and procedures she’s endured. By looking at her, you would never know she has such a special heart. She is cyanotic (bluish tinge to her skin) since her oxygen saturations hang around 80. She is on only 2 medications and we visit her cardiologist every 3-4 months now. We are waiting for her third open-heart surgery called the Fontan Procedure which is usually done between 2-4 years of age. Upon completion of this stage, her heart will function as a single-ventricle, the left side of her heart doing all of the work while blood just passively flows to her lungs. She will be a single-ventricle or half-heart for her lifetime. Even though we are not “out of the woods” yet and coping with a heart defect is not easy, Maddie has shown us a strength that we can all admire and strive for. She is our little miracle and brings such HOPE to our family! We thank God every day for the gift of Miss Maddie and the many blessings that she has brought to our family!

Tagged

Our friend and AWESOME preschool teacher posted this tag today on her blog so I thought I'd play along too. I enjoy reading tags on other blogs and I'm sure that I'll like reading this again (in that "blog book" I'm planning to get bound someday!)

Tagged:

Five Years Ago I:
1. Was enjoying staying at home with Jace, he was 6 months old, after teaching for 3 years
2. Decided we needed some "color" in our house...It was a MUCH BIGGER painting job than I anticipated
3. Was planning our trip to New York and Washington DC to visit Derek & Carly's family
4. Finishing the last classes (at night) for my masters degree at CWU
5. My mom finally talked me into quilting! Started and finished my first one called "Snowball Star Crazy" (a "Buggy Barn" quilt for all of you quilters)

Five Things I did Today:
1. Ordered Maddie's birthday supplies
2. Did a couple of loads of laundry as well as put 3 full baskets away
3. Took the kids to the park for a playdate with friends and cousins
4. Made dinner for my brother's family for Tripp's arrival (I'm 3 weeks late)
5. Spent the afternoon at my folk's visiting and the boys got to play in the dirt with cousin Jett

Five Places I have Lived:
1. Symrna (Royal City)
2. Ellensburg
3. Royal Slope (still Royal City)

Five Jobs I Have Had:
1. Cleaned Houses
2. Preschool Teacher at Migrant Head Start
3. Taught 3rd Grade at Red Rock Elementary
4. Stay-at-home mom
5. Bookkeeper for the livestock books, also Bryan's "main hired-woman" when he needs me at the feedlot or orchard

Five Things I Would Do With A Million Dollars:
1. Have my kid's college educations secured
2. Invest for our retirement & future
3. Generously give to CHD Research for single-ventricle studies, like stem cell research, to help find a way to permanently fix my daughter's heart as well as many other kiddos' hearts with complex heart defects
4. Take an amazing vacation with my family to somewhere warm & tropical!
5. Pay back my mama by taking her on a shopping spree!

I want in 5 years:
1. my kids & our entire families all here, healthy, and happy
2. to be passed Maddie's final surgery and for her heart to be doing well
3. to be living in our new home
4. to have had another baby
5. enjoying life with my husband of 13 years and our 10 year old, 8 year old & soon to be 6 year old, plus any addition...busy times are ahead for us!

I tag anyone who wants to do this but especially my sister-in-law's: Sybil & Jessica and fellow Heart Mom's out there! Great way for us to get to know one another better! Have fun!