Thursday, February 9, 2012

CHD Awareness Day 3: All the little babies...

Annabelle - 3 weeks old!

So, I thought I'd do something a little different today.

And it might be a total epic fail, but here goes.

I talk about Annabelle a lot of my blog, obviously, and have asked for prayers for quite a few other little babies. The truth is, I follow the stories of a TON of little babies. It's a wee bit of a passion of mine, because so many prayed for Annabelle, I have a huge heart to pray for and support other heart kiddos and their parents. Yet, there are so many... and it gets overwhelming at times! It hurts my heart that I can't showcase ALL of them. Because they are all so precious in God's eyes, and mine!!!

So here is what I thought would be fun:
  • If you are a heart-momma or daddy of a CHD fighter or fallen hero...
  • Or if you are a relative or friend of a heart kiddo...
  • Or if you follow the story of a heart kiddo...
...leave a comment. You can leave just a name, or you can leave name and diagnosis, and you can leave a link to the blog/caring bridge of the child if you'd like. Really, as much or as little info as you want. If you have a specific prayer request for your little one right now, feel free to include that as well!

They can be in the hospital, or currently recovered, it doesn't matter. All our heart kiddos need bathed in prayer.

While I obviously can't follow ALL heart babies (my house doesn't clean as much as it should as it is!) I will promise to pray for them, specifically by name, each day of heart-week (and probably after too!) and my hope is that other blog readers will pray for the kiddos as they see names listed, this week specifically.

CHD awareness is not only about the "facts" of heart defects, but about being aware of all these little babies and children and even adults that suffer on a daily basis, and praying for them. It is so easy to click the X button and not read about them because it is sad. I've done that in the past myself.

But our goal is to show you that CHD is more than just some rare thing that affects a couple of super unlucky babies. It's widespread and all-too common. One in 100. That's a lot.

And my goal is to get us not only thinking about CHD, but getting on our knees and doing some serious praying for them!

If I get no comments... well, that's fine. I know everyone is busy. But I will comment myself later and list some that I know if need be!

Obviously, my list starts with Annabelle. Born with an unbalanced AVSD with hypoplastic left heart. Spent 339 days in the hospital. Doing great today, besides a nasty cold. Although that cold and pretty deep cough is starting to make me nervous, so prayers for this are appreciated!

Your turn!

(Also, if you don't follow a heart baby's story or aren't personally affected, I'm sure your comments that you are praying would help us heart-momma's out that read them! It really DOES mean a lot to us!)

40 comments:

Keli Gwyn said...

My great-niece was born with a small hole in her heart. Her first six months of life were tenuous, but the doctors assured my niece and her husband that the hole would close of its own accord as their daughter grew. That was the case, and Kate is a happy, healthy three-year-old.

My niece and her husband were assured their daughter's situation wasn't genetic and that there was little chance of problems with subsequent children. She became pregnant with a little boy, but his heart was so bad he died in utero, and she had to wait for her body to deliver their stillborn son. A tragic loss.

My heart aches for what my niece and her husband have been through, but I rejoice in the excellent medical care my niece and great-niece received. I rejoiced again when Kate's sister was born, a healthy girl with no heart issues.

Suz said...

PIper, born November 3rd, 2011 with Hypoplastic Left Heart Syndrome, DORV, moderate ventrical dysfunction and moderate Tricuspid regurg. Piper had her Norwood surgery at 5 days old, then a valve repair at 10 weeks. Piper was listed for transplant 2 days after her valve repair and is currently fairly stable. We are just waiting and praying for that phonecall...

http://www.facebook.com/pages/Prayers-For-Piper/194526460642937

Julie said...

I am a heart baby prayer warrior too, I was turned onto Bowens story over a year ago and from there began to pray for all those stories I have learned from there. I pray for the fighters-Annabelle and Bowen and I also pray for the Moms of the fallens Joshua and Ewan.

Kristi said...

Quite by accident, I have become a heart baby prayer warrior. My sister in law lost a baby to chd before she married my brother. Chloe was 6 months old. My cousin's little boy, Bentley, lived a few hours. He, too, had a chd.

While praying, please remember this young man - Evan Crawford - facebook - praying for evan crawford. He had to have a heart valve replaced as an infant. Now, in Jr. High, the valve has become infected. I don't understand or know all of it, but somehow he has had a stroke, bleeding on the brain and is fighting pneumonia. He is not strong enough for the heart surgery he needs. He needs a miracle, and we KNOW our God is in the business of miracles!

Norm said...

Great idea Krista! My son, Witt Deane, was born with Aortic Stenosis and was later diagnosed with severe leakage in his mitral and pulmonary valves. In September of 2010 at five months old Witt had a successful heart transplant and is doing great today.

I don't have a prayer request for Witt but would like to give praise to our Lord God Almighty for his grace and healing.

Norm

Beverley said...

Our sweet ^^Leyda^^ went Home on Oct 22nd 2011 at 6 years old. Leyda was at home on Hospice when she died...I will advocate for Hospice when ever I can! She had HLHS and hypo plastic right lung and various other cardiac anomalies. She developed PLE (Protein Losing Enteropathy) as a consequence of the Fontan (doesn't happen all the time tho'). She had her first stoke the day of/after her Fontan in 2007, and then a second stroke April 2010.

(I 'like' Piper on FB!)

Flossie said...

My brother, turning 31 next week, was born with a hypoplastic left heart. Now doing mostly well from a cardiac perspective but has some other issues/demons that he is fighting. Would appreciate prayers for him, his doctors, and our family.

Amy said...

Ella Dawn, my sweet sunshine. HLHS/RAS 20% to live. Thriving at home with so much joy! www.elladawn.blogspot.com

Kathy K said...

My son is John Jozef, HLHS born 2/25/11. I too have a huge prayer list of heart babies including Annabelle. I love your blog and like you I tried to follow them all but you just can't and that's ok, as long as you konw you are praying for "all" of them collectively, God will hear. www.ourhlhsjourney.blogspot.com

Erika said...

My third son, Levi, was born in June 2010 with undiagnosed critical aortic stenosis. He's had one open heart surgery so far to repair his valve, an aortic aneurysm, and sub and supra aortic stenosis. He's such a sweetheart and is doing great right now, other than dealing with a really nasty cold and eye infection. www.heartlevi.blogspot.com

Thank you for sharing Annabelle's journey--the good and the bad. It's encouraging in so many ways.

Anonymous said...

Our third child, Elise (we have 2 healthy boys) was born July 26, 2010 with Hypoplastic right ventricle and pulmonary atresia. She has had 2 open heart surgeries (Bt shunt at 3 days and Glenn at 6months). She has one more (the Fontan) to go but we still pray God will heal her! I had heard on the radio about Bowen Hammit. When I went to the website there was a link to Annabelle (I believe this was Dec 2010) and I left connected since our girls were so close in age. I have been following Annabelle and the Phillip's family journey ever since. It has given me hope, encouragment, laughs and tears. Thank you for sharing. I can remember how thrilled I was when Annabelle received her heart, it was an awesome day.
Elise Faith has been a wonderful gift to us and we thank God every day for her life. Her last open heart(and her cath! she has always had difficulties with those) is bewteen 2-5years so my prayer is that will go well.We have a wonderful surgeon and cardiologist and I am thankful for that. Praying for all your heart families out there.
Be blessed!
:)Shannon

kim weiss said...

Our second Shaun, Shaun Patrick Weiss, has HLHS and was born on 4/9/2010. He had his norwood at 3 days old and his Hemi-fontan at 6 months old. We are now gearing up for his fontan at the end of March. We have been extremely blessed that he has done great and are looking forward to having this last surgery over with. What a great way to promote CHD awareness, thanks krista! Praying for all of the heart families out there!

RainbowWriter said...

I follow a LOT of heart hero blogs and I think we should all learn about CHD and the awareness it needs. Myself I was born with a Heart murmur, luckily though it grew out on it's own and didn't become a problem but I understand how serious something like that can become if it sticks around. I pray everyday for as many heart kiddos as I can and I enjoy following their journey.

Deb said...

My Son Second child was born with single left ventricle, transpossession of the great arteries, and a small vsd. He had his first surgry (B Shunt, Glenn, Fontan) at 4 weeks, second at 6 mo and the fontan at age 5. He is almost 17 now (High School Junior) and you would never knwo he has a heart condition (but we know, and so does his coaches). He has and does play in varsity HS sports (8 man football, Basketball and Baseball)..We are so very blessed and pray for all the heart babies. This mama is now preparing to send him off to college in 18 months..

Koala Bear Writer said...

A boy I babysat was born with a heart defect - I don't know the details, but today he's in university and engaged to a beautiful girl. :)

Diana said...

Jude - 22 months old HLHS. After a rocky start he's doing great other than not tolerating tube feeds and not eating (Which makes it hard for him to gain weight). He has another surgery coming up soon (the Fontan). Prayer requests for an uncomplicated surgery with a quick recovery and positive steps towards oral feeding (and not vomiting) and weight gain.

Www.caringbridge.org/visit/gabrieljude

Anonymous said...

Carly- 18 years old, born with Aortic Stenosis, Aortic Regurgitation, Bicuspid aortic valve and an enlarged aorta. Struggling with major fatigue(as in i need to take a nap every day to make it through), and some shortness of breath and heart palpitations. I have my cardiologist appt in a few weeks and am hoping they can figure it out as it has been getting worse. Please pray that i can find some answers!

The Great Mooski said...

Wonderful idea, Krista!!

My son, Ethan, is 3 and was born with Transposition of the Great Arteries and a VSD. His arterial switch/patching of the VSD was at 9 days old and he had a 2nd surgery to widen his pulmonary artery and valve at 4 months old. He will need his valve replaced somewhere down the road.

I guess my prayer for him would be to stay healthy (he's had croup and a couple of ear infections) and that his little heart is doing as good as we think it is. We are on yearly cardiology visits and won't see his dr until May. It's soooo hard to wait! He is always running 90-nothing but anytime he slows down, I feel worry creep in!

His CaringBridge is www.caringbridge.org/visit/ethankyle

Erin and Raygen said...

Thanks Krista for sharing your family story with us. I have followed your blog and Annabelle's journey since I found out my daughter Raygen was going to be born with HLHS. Your blog and wonderful daughter has always given me hope and I feel like we know each other, lol! Raygen is doing awesome just waiting for the fontan! Hopefully a few years away.
Erin

Tammi T. said...

What a wonderful idea, Krista. Our Daniel was born with HLHS. He had his Norwood at one week of age. It was followed by his bi-directional Glenn at 7 mos. of age. Shortly after turning 2, he had his extra-cardiac Fontan. He is now seven and a half years of age. He is doing well. Of course it takes him longer to heal whenever he is sick but we are so thankful just to have him.

Once we heard about Bowen on KLOVE, we started following his blog. That is where we learned of your Annabelle (and many more). We now follow or check-in at several blogs and pray for each. My boys and I list names each night in our prayers. Many we only know by first name but our God knows who they are and their specific needs even when we don't.

Please pray for Daniel's continued health and that he will trust his Creator with his heart.

Julie said...

I grew up in a small town near Toledo and started following Bowen's story from the beginning. I heard about Annabelle several months ago and have been following ever since. :)

The Taylor's said...

Andrew was born on May 7, 1993 with HLHS. He recieved his transplant on May 20, 1993 from a 15-day old baby boy in Toronto, Canada (we lived in St. Lous at the time). May 2011, he graduated from High School. We have been following your blog & as we read about Annabelle's journey, it brings back alot of our memories (good & bad). Thank you for sharing. May God continue to bless all CHD Kids & their families.

Jennifer Hood said...

Awesome idea! David was born March 18, 2009 with HLHS. He also has cerebral palsy due to a complication following his Norwood. He's very delayed, but very happy. He starts PPCD (Pre-school Program for Children with Disabilities - offered in our school system) in March. I think the transition will be harder on me than him! :-) He's scheduled to have his Fontan in June of this year.

You can follow him at caringbridge.org/visit/babyhood, and my perspective at fumblinggraciously.blogspot.com.

Thanks again!!

Anonymous said...

I've been a "stalker" at your site since about Nov 2010, and have never posted. Dec. 18, 2010 would have been my next younger sibling Jeffrey's 50th birthday, but Dec. 22, 1960 was his death day, due to an enlarged heart as a consequence of CHD. No diagnosing, no treating, just "your baby dies." Thank God for the amazing advances in medicine in the past 50 years!

Anonymous said...

Sending prayers and positive thoughts to all children and adults with CHD, as well as to their courageous families! Thank you so much for keeping us informed and educated and of course so inspired!

Anonymous said...

Aletta Cherry, mommy to an CHD angel named Gabby. She passed away when she was 4 1/2 years old. She was born with a single atrium and pulmonary hypertension (the hypertension is the ultimate reason why she went to be with Jesus). I, too, have a heart for heart parents and children and spend a lot of time following and praying for little angels.

Anonymous said...

I began following Anabelle's story after reading about her on Bowen's Heart. I have been a nurse for 23 years and have taken care of many CHD babies and children. At the same time I was following your story my cousin Dawn had a successful heart transplant. She was born with Shone syndrome and had underwent numerous surgeries throughout her life. She is 23 years old and has a 4 year daughter.

Krista Phillips said...

Kristi, I tried to go to the facebook page and couldn't find it.... can you post a link? Thanks!!!

Krista Phillips said...

Shannon! I didn't realize Elise's birthday was so close to Annabelle's!

In fact, Annabelle was SUPPOSED to be born on 07/26... we were going to induce labor that day but she decided to come early:-)

Krista Phillips said...

Kim, I will absolutely be praying end of March! Do you have a specific date? Annabelle has her annual heart cath and biopsy on 03/29, so I will be praying for both of them!!!! :-)

Krista Phillips said...

I LOVE LOVE hearing about "older" CHD kiddos!!!! WOW! College!!! I think Momma is gonna need some prayers with that one too:-)

Krista Phillips said...

Diana, I visited your caring bridge... I think I might have remembered little Jude from Vandy!!! I'm not sure how many times he was there... but I definitely remember a Jude on more than one occasion (obviously there might be more than one Jude!) Anyway, I LOVE meeting other vandy kiddos!! Will be praying as he approaches his Fontan!

Krista Phillips said...

Carly, absolutely am praying for you!!!!! I'm so sorry you're having to deal with all that! Praying they can pinpoint the problem and help you over this hump!

Krista Phillips said...

It sounds like Ethan is doing AMAZING... but I totally get the worry!!! It's so hard with our little heart warriors! They are SO tough though:-) Praying for continued strength and health for Ethan and for peace and comfort for his Momma!

Krista Phillips said...

Erin... thank you so much! Am praying for Raygen, that she rock that fontan in a few years and do fantastic in the mean time!

Krista Phillips said...

Absolutely praying for Daniel's health, and trusting Jesus is a FANTASTIC prayer request too!!!! It's one I pray over my children daily!

Krista Phillips said...

Thanks for following and for your prayers Julie!!! They mean a ton! And Bowen holds a special place in Annabelle and I's hearts too!!!

Krista Phillips said...

Wow!!! I haven't heard a lot of stories of heart-transplant kiddos who are older now... so this was super special for me to read this. THANK YOU for sharing!!!

Krista Phillips said...

Praying for David!!! I'd found your blog recently too:-)

Anonymous said...

Thank you for all your posts for CHD awareness week. I became a heart parent 3 1/2 years ago when my daughter Jacqueline was born although we didn't know about her heart defect until she was 5 weeks old. Looking back I still can't believe she was my third baby and after all the baby/pregnancy books, websites, magazines, & doctor appointments I had never even known that CHD is the number one birth defect. Jacqueline has mitral valve regurgitation. After her hospital stay she left on 4heart meds and is currently down to one! We were told that she would be facing at least 5 OHS to keep repairing her mitral valve but so far she has not needed one surgery....only God can do that! With God nothing is impossible! There is power in prayer!

Heart Prayer request:
Baby Eric
Baby Miles
(both recovering in the hospital after multiple heart surgeries)

Heart Friends:
Maya
Noah
Evelyn

Believing in Him, Kristen Ramos