Heart Month!

As is my norm, I have gone far too long without updating the blog.  Shame on me!  

February, as many of you know, was Heart Month.  The point of Heart Month is to spread awareness of heart health, heart disease, and congenital heart defects.  There is even a week dedicated to CHD Awareness, which is great (though sadly, awareness is still lower than it needs to be).  

For February, I promised to post one Facebook status per day dedicated to heart/CHD awareness - and I told my Facebook September moms group (hi, Peas!) that I would share a fact per day with them as well.  Unfortunately, I made it about halfway through the month and then fell behind, and basically didn't post anything for the second part of February.  The good thing is, I actually had a few people ask me about it - "Hey, Dawn - I miss your heart posts, are you going to share more facts?"  Since going back and flooding my Facebook all at once with heart facts might be a bit much, I figured I would dedicate a blog entry to Heart Month and CHD Awareness, with 28 total facts/tidbits to represent each day of February.  Some will be shared from what I already posted on Facebook, and much of the information will be new.  So, please read, enjoy, and SHARE SHARE SHARE with everyone you know.  Heart health and CHD awareness are so, so important - thank you for helping to spread the word and educate others!

Heart Facts!

1. 1 in 100 babies will be born with a congenital heart defect.  

2. A pulse-oximetry test is a simple, non-invasive test that can be done on newborn babies to help detect congenital heart defects. At the federal level in the United States, it has been recommended that pulse-ox testing be part of the standard newborn screening - however, not all states are required yet to do this test. If you are pregnant, please ask for a pulse-ox when your baby is delivered - and if you know others who are pregnant, spread the word!! 

3. Colby Groom had two back-to-back open heart surgeries right before his 10th birthday. Afterward, he was inspired to raise money for heart research and worked with his dad (a winemaker) to create Colby Red wine. Check them out - we just bought some today! http://www.colbyred.com/

4. There are 35 different types of Congenital Heart Defects. Little is known about the cause for them, and there are no cures for any of them (though thankfully there are many successful surgical procedures to help address them).

5. As medical care and treatment have advanced, infants with congenital heart defects are living longer and healthier lives. Many now are living into adulthood. It is estimated that nearly one million adults in the United States are living with a congenital heart defect.

6. Many CHDs are unfortunately NOT diagnosed until after the baby is born. If you are pregnant please ask the following five important questions at your 20 week ultrasound and make sure you get clear answers - and if the doctor can't answer your questions, DEMAND a follow-up ultrasound to get a closer look at your baby's heart: 

7. February 7-14 is CHD Awareness week! Illinois is one of only 28 states who have officially recognized this week for CHD Awareness... you can view the list on http://tchin.org; if your state isn't listed, do something about it! Help spread awareness!!

8. There are 5 key "H.E.A.R.T." signs of CHD to look for in a newborn baby: 1) Heart rate: too fast or slow? (normally 100 to 160 beats per minute) 2) Energy & Feeding: sleepy, quiet, floppy, too tired to feed or falling asleep during feeds? 3) Appearance: a pale, waxy, dusky, blue, purple, mottled or grey colour may mean that not enough oxygenated, red blood is getting to the body (normal oxygen saturations are 95-100%) 4) Respiration: breathing too fast or slow? (normally 40-60 breaths per minute) 5) Temperature: cold to touch – particularly hands and feet?

9. Charles "Peanut" Tillman of the Chicago Bears has a daughter who had a heart transplant as an infant, and Greg Olsen of the Carolina Panthers recently had twins - one of them has HLHS.

10. There are an estimated 2,000,000 CHD survivors in the United States.

11. There are many support groups available for heart families. Mended Little Hearts is one them - it's national, but also has local chapters.

12. Adelaide was born with hypoplastic left heart syndrome (HLHS), which means the left half of her heart (the part responsible for circulating blood throughout the body) was severely underdeveloped. You can read more about HLHS here: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002096/

13. There is a seriously awesome Heart Mama Blog community on the internet. So many of the friends I've gotten to know throughout our journey have been able to elegantly and emotionally translate their experiences into beautifully-written blogs. Throughout heart month, Adelaide's story was featured on two different blogs - I've linked to her story specifically, but please take some time and read the rest of these ladies' blogs... they profiled so many amazing heart warriors throughout February, and also blog regularly.  

http://xaviersheartjourney.blogspot.com/2013/02/day-28-meet-adelaide-martin-and-xavier.html

http://accidentalpurpose.com/chd-week-tale-of-transplant/

14. February 14 is Valentines Day, Heart Day, CHD Awareness Day, and Donate Life Day! So many things to celebrate. Please take some time today to kiss, hug, and celebrate with your loved ones, and say a prayer for those who have donated life so that others may continue to live.
15. Did you know that many infants born with a congenital heart defect will have life-saving surgery within the first few days of life? Their heart is roughly the size of a walnut when their first heart surgery is performed. A WALNUT. That’s nuts. (Pun 100% intended.) Thank God for skilled surgeons who are able to successfully operate on such tiny babies!

16. Though infant heart transplants can be the ultimate life-saving miracle, there are so many mixed emotions behind the whole idea of what a transplant involves.  Read one mother's story here: http://www.huffingtonpost.com/2013/02/05/infant-heart-transplant_n_2594147.html

17. Build-a-Bear has partnered with the Children's Heart Foundation to raise money for CHD research.  Read about it here: http://blog.mendedlittlehearts.net/2013/02/the-chf-and-build-a-bear-workshop-national-partnership/

18. An approximate 100-200 deaths are due to unrecognized heart disease in newborns each year. These numbers exclude those dying before diagnosis.  CHDs are the most common cause of infant death due to birth defects.

19. Most causes of CHDs are unknown. Only 15-20% of all CHDs are related to known genetic conditions.

20. Most CHDs are thought to be caused by a combination of genes and other risk factors, such as environmental exposures and maternal conditions. Because the heart is formed so early in pregnancy, the damage may occur before most women know they are pregnant.  Environmental exposures that may be related to risk of having a CHD include the mother’s diet and certain chemicals and medications. Maternal diabetes is a recognized cause of CHDs. Maternal obesity, smoking, and some infections also may raise the risk of having a baby with a CHD. Preventing these risk factors before a pregnancy is crucial.

21. The most common form of CHD in children is the ventricular septal defect - a hole between both main muscle chambers, or ventricles, of the heart.  The severity of the defect depends on its size and other associated anomalies.

22. It is commonly believed that CHD can not be prevented.  However, to minimize the risk factors you CAN control while pregnant, there are steps you can take.  In particular, women of childbearing age should take multivitamins containing folic acid on a daily basis both before and during pregnancy, avoid tobacco and alcohol use, use only medications necessary for maternal health, and achieve a healthy weight before pregnancy.  Women with diabetes should be in good glycemic control before becoming pregnant.  Planning for pregnancy may help avoid inadvertent harmful exposures to the fetus in the first trimester, when mothers may not yet realize they are pregnant.

23. Lurie Childrens Hospital, where Adelaide receives her care, is nationally ranked in 10 pediatric specialities - including pediatric cardiology & heart surgery.  You can read more about it here: 

http://health.usnews.com/best-hospitals/area/il/children's-memorial-hospital-6430560

24. Speaking of Lurie - until June of 2012, it was known as Childrens Memorial Hospital.  On June 9, 2012, they moved from the old hospital in Lincoln Park to a brand new, state-of-the-art facility in downtown Chicago.  They moved 126 patients in 14 hours - can you imagine the planning and coordination it took to do that successfully?!  View some pictures from the day here: 

http://galleries.apps.chicagotribune.com/chi-120609-childrens-memorial-hospital-move-pictures/

25. Snowboarder Shaun White was born with a CHD called Tetralogy of Fallot.  Though he has gotten a lot of snark in the heart community for not being a vocal advocate for CHD awareness, he has publicly addressed his CHD, though minimally.  Would I love to see him use his fame to spread the word about CHD awareness?  Yes.  Do I think he could raise a crapton of money for CHD research by hosting just ONE well-publicized, maybe televised, snowboarding event where he donates all proceeds to the Childrens Heart Foundation?  Definitely.  But, ultimately it's his life and his decision as to how he does or doesn't use his experience to help others... I personally wish he would, but no one can force him.  It could be that he just doesn't feel too connected to his CHD since he was so young when he went through everything, but again - it's his life, his decision.  Here's an article from 2002 where he talks briefly about his TOF: 

http://usatoday30.usatoday.com/sports/olympics/saltlake/snowboard/2002-01-10-teen.htm

26. Many children born with CHDs experience delays related to physical development, cognitive development, and/or feeding and growth.  Often, these delays are due to being flat on their backs for so long prior to/after surgery, or being on a breathing tube.  However, many of these children experience great success through working with occupational, physical, and speech therapists - and many heart warriors end up right on track developmentally, even if it takes them a bit more time than their peers.

27. The human heart does the most physical work of any muscle in the body throughout a lifetime. 

28. As I finish this blog entry, I am watching my little heart warrior scurry around her play area, picking up toys and dropping them over the edge of her play gate.  She is on a mission - busily running from one side of the room to the other, collecting her furry friends and moving them around.  She is babbling to herself, squealing with joy, and grinning like crazy.  I owe this typical morning not only to the family who made the decision to donate life in their time of grief, and not only to our amazing team of doctors, nurses, and surgeons at Lurie Childrens who have spent countless hours with us making sure Adelaide is doing as well as possible, but also to my friends and family - they have supported us through our worst times over the past 18 months, and celebrated with us in our victories.  Without all of you, we wouldn't be in nearly as good a place as we are today - so thank you, from the bottom of our hearts.  

Lots of love to you all, and thank you for reading this blog entry - I know it's long, but it's very important to me, and it means so much that you took the time to read it!    

Playing Catch-Up - Waiting for the Norwood

I feel as though every time I find the time to sit down and blog here, I start by commenting on how absurdly long it's been since my last post.  And then I say that I'm going to blog more regularly starting... wait for it... NOW.  And then... months pass.  So, let's try this again.

I'm not sure it's realistic at this point to capture every detail of Adelaide's journey, as it's now been well over a year since she was transported to Childrens Memorial Hospital... and almost 15 months since her transplant, if you can believe that!  BUT... I am still going to try to write out as much of her story as possible.  Regardless of whoever may be out there still checking this blog (because let's face it - who wants to read a blog where the author never updates?  Ahem...), I know that I will be happy if I can record her story at least for a personal momento.  And to show Adelaide someday, too.  :)

So last I wrote, we were all of three days into Adelaide's stay at CMH.  We had just heard from her nurse that Adelaide had an infection in her bloodstream, likely due to the IV in her belly button.  Her surgery, originally scheduled for 9/16/11, was going to have to be postponed.

Right before we heard about Adelaide's infection, Brian & I had decided to share news of Adelaide's heart defect and upcoming surgery on Facebook.  While we had posted on our pages when she was born, and shared pictures, we hadn't said anything since we found out about her HLHS.  We wanted to make sure we were able to personally tell family and our close friends first, so none of them would find out second-hand and/or online.  So, I posted a status that read,

"Brian and I found out early Monday morning that our little Adelaide has a severe but operable heart defect. She is scheduled to have surgery on Friday.  If you pray, please pray for our little girl.  Either way, please keep our baby girl in your thoughts.  We will provide updates when we're ready."

Yes, I went back on my timeline to get the exact status I posted... and yes, I just re-read all of the supportive and thoughtful comments people left, and it brought tears to my eyes (as it does every time I think about or re-read them).  We are truly blessed to have such amazing, supportive, caring, and kind friends and family.  One of my friends, Meghan, shared in a comment that she had another friend whose daughter had open heart surgery at 5 days old, and she offered to connect/introduce me to her.  I gladly took her up on this offer.  As it turns out, Meghan's friend is named Erin, and Erin's daughter Jane was also born with HLHS.  Erin & I became Facebook friends and over the course of the next several days, we exchanged many messages.  She was a lifesaver during a very difficult time!  Jane, by the way, is post-Fontan (the third corrective surgery in the series for HLHS) and is doing very well.  And, she's super cute.  :)

Incidentally, my friend Jenn also had connected me with her friend - ALSO named Erin - a few days prior when we first heard of Adelaide's diagnosis.  Jenn's Erin has a son named Jonas who was born with HLHS.  Jonas is an amazing, adorable little rockstar of a toddler and though I have never met him or his mother in person, I cannot wait to do so someday!!!

Okay, so we went to the hospital Thursday of that week, spent time with and snuggled Adelaide, and talked to a multitude of doctors, fellows, nurses, and hospital staff.  I think that Thursday was the first day we met Dr. Nguyen, or Winston as most people called him.  Dr. Nguyen was one of our saving graces at CMH.  Not only is he a fantastic cardiologist, but he has the best bedside manner of almost any doctor I've ever met.  He is very soft-spoken, yet knowledgeable... honest, yet comforting at the same time.  Any time we spoke with him throughout our stay at CMH, he would give us the straight-up story of how Adelaide was doing, make sure we understood what was going on, ask us questions, tell us to take care of ourselves.  He was - and still is - amazing.  When we met him for the first time, he spent some time reviewing Adelaide's condition with us and told us she looked pretty good aside from the mystery infection.  He was hopeful that we would be able to schedule her surgery for early the next week.

Over the course of the next few days, we settled into what would soon become our routine at Childrens.  Spend the day with Adelaide, talk with a handful of doctors and/or fellows throughout the day, get to know the NICU nurses.  Catch a meal or two in the hospital cafeteria.  Drive home to sleep at night.  Wake up early to do it all over again.  And for me, part of my routing was pumping every three hours.  Since Adelaide wasn't eating as we waited for her surgery (she was being given IV nutrition), I was building up quite a nice stash of milk for her.  (Side note: eventually it would get to the point that the nurses at CMH would tell me to start freezing my milk at home because my allotted space in the hospital freezer was full - as was the backup space they gave me for the overflow!  This was a great problem to have.)

Honestly, the days leading up to Adelaide's surgery are all kind of a blur at this point.  I don't know if they would be any clearer had I actually written this a year ago - they were just so full of information and stress that I don't remember many details.  I do know that we spent a ton of time at the hospital and cuddled Adelaide the majority of the time we were there.  We also kept in touch with our family and friends, mostly through Facebook, to provide updates on how Adelaide was doing and when her surgery would likely take place.  And we felt a ton of support from our friends and family, who not only reached out to us to see how they could help or what they could do, but also shared our story with their friends, families, churches, coworkers... they spread the word about Adelaide's story far and wide, and ultimately there were SO many people praying for her, thinking good thoughts for her, and sharing her story.  I truly believe that the tremendous amount of love spread for Adelaide is one of the reasons she (and we!) remained so strong through everything.

We found out early the next week that Adelaide's infection was on its way out and that she could likely have surgery on Wednesday, 9/21/11.  Dr. Nguyen told us that we should plan on that date for surgery and if needed, we could move it; however, he felt confident that Adelaide was going to be in good shape to move forward with that date.  We let our family and friends know and started getting ready for surgery day.