2.08.2012

When do you find out?


I don't believe in saying one illness is worse than the other. They are are terrible. I think statistically  speaking, this is a lot.

We found out with Cohen before he was born that he had congenital heart defects. God prepared us for what was coming, though we could never have been prepared for the outcome.

I'm not sure of the statistics off hand, but SO many babies are born and go home. It isn't until they are home and crash that their heart defects are detected. Often times, it's too late.

We are forever thankful to my OB detected something, via ultrasound, and sent us in for an echocardiogram. Of course, it was probably the second hardest day we've experienced, but at least we knew. We knew we had to fight.

I know some people live their lives not wanting to know until it's time, but congenital heart defects can be detected. 

It's not required, but everyone can get an echocardiogram while pregnant. This can determine how the baby's heart is functioning and if there are any signs of defects.

It's not required (in most states,) but everyone can request/demand that their baby have a pulse oximetry test before leaving this hospital. This can determine if their are any heart defects, before the baby goes home.

I live in a state of I'd-rather-be-safe-than-sorry. I want to do all I can.

I'm a little bit convicted that I don't have more about these tests, in plain sight on my blog. People need to know. They need to know there are tests.

I want to help.

This week I'm going to take the time to contact my legislator about the Pulse Oximetry Advocacy. Why shouldn't we all want something to happen that can save lives? This is an easy test.

If you need to read something to let you know WHY you should have your baby checked, grab a Kleenex and read about Cora's last night. It wasn't until her fifth day on this earth that congenital heart defects took her life. No one knew anything was wrong with heart heart.

I take that back. God knew. He has also given Cora's mom the strength to keep going and help teach others. She is doing an amazing job.

Ive never been in both situations, as far as knowing and not knowing. I knew. I knew Cohen had a broken heart. I know how bad my heart hurt for him and him having to leave us early. I can't imagine not knowing...after what we've gone through.

We are wearing red this week, and most of the month, for Cohen and Cora..and Luke... and Ewan and so many other babies that once had broken hearts.



Thank you, God, for the broken hearts and the healthy ones, too.
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34 comments :

  1. Such a beautiful post, thank you.

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  2. Lovely post! Education is power for parents, nice job! :)

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  3. Beautifully written Megan!! And I love the adorable outfits the twins are wearing!! God bless cora's family and every family affected by congenital heart disease!! I'm sure that Cohen is looking over all of you and is grateful you are spreading awareness so well!! Xo

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  4. I can't imagine being told something was wrong with my baby's heart. I would melt. God truly has everything in His plan. Sad for the journey you've endured with Cohen,but blessed to have seen his life through your blog and now TWICE blessed to see the blessings that Knox and Sloane are :) xoxo much love my friend! Becky

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  5. Your blog is one of the best ever, you have a way to make things ocme across, i love it...
    Such a special post. Thanks to you

    Hugs to sweet babies

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  6. Thank you for sharing your heart and passion with CHD. Parker wasn't born with CHD. We were told at his birth that his heart was the least of our worries....trying to get used to that ostomy bag.

    Parker was diagnosed with PH a few months later.

    Good for you for taking this topic to your Legislator.

    Cohen's Mama is pretty amazing. May you and all the families affected by CHD be blessed. xoxo

    Tammy and Parker
    www.prayingforparker.com

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  7. My heart is truly Broken for sweet baby Cora and her family, as well as all other sweet angel babies lost.
    Thanks for this post Megan. I agree educating all parents to be extra careful and going above and beyond is 100% worth every little extra thing we have to do.
    I didn't even think to have this test done. I will most definitely have it with our next baby.

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  8. Megan Thank you for posting about this. So many people out there are not aware of the tests.

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  9. Oh and I forgot to mention your adorable little mini's and their super cute valentines day outfits. They are absolutely precious.

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  10. I've read your blog for awhile and never posted....thank you for educating other parents out there about the simple pulse ox test. I work as a nurse on the postpartum unit. We recently started doing pulse ox checks on all babies before discharge. One little baby's life was saved when a coarctation of the aorta was picked up from this simple test. There were NO other signs at the time. It is important for the medical staff to do a pre- and post- ductal pulse ox....so on the R hand and then compare to L foot. I enjoy reading your blog and love seeing all your pictures! ~Barbara

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  11. So glad you shared this! My CeCe has a heart defect that was detected inutero. We were so thankful to have the ability to know what to expect. She's a healthy girl now...her heart defect healed shortly after birth. Keep preachin' girl!! And you little ones are ADORABLE!!

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  12. Hi Megan. I've been a lurker for a while and really enjoy your blog. Your babes are so cute! Thank you so much for drawing attention to this subject. We experienced a very scary moment on our baby boy's 5th day of life (born just a few days after your cuties) because of a congenital heart defect called Coarctation of the Aorta. We had no idea that there was anything wrong with our sweet boy's heart and nearly lost him after he turned blue and became unresponsive at home. I find it unbelievable that it's not common practice to make sure our babies are healthy before taking them home, particularly with something as available with a pulse oximetry test, or an echo. Now we'll have that readily available to us for future children because of our little Ronan's heart, but it shouldn't take nearly losing a baby for that to happen. Thank you again, people need to be aware of this!

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  13. So beautiful. Those twins are so gorgeous. And seeing them wear red for their brother takes my breath away. Thanks for sharing Cora's story. If I can help you with writing your legislator or anything at all, please let me know. xo

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  14. Such an amazing post!! I have seen the effects first hand of congenital heart defects with my brother. Thankfully, he has gotten through all his procedures and surgeries, even the one last week with just minor set backs!

    We learned some of these statistics through the years and it alarming. I wonder sometimes if awareness is not as strong because you can't see the suffering and problems from the outside as cleary?

    Regardless, I agree more needs to be done to raise awareness!

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  15. Praying for all the heart babies out there!! As a CHD baby myself, I give you a big fat bravo for this post. And of course the heartbreakers at the end of the post are just the icing on the cake!

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  16. I was sent for a pre-natal cardiac echo when I was 18 weeks pregnant with our first. I had lost a previous 20 weeker and our OB was just being cautious. Everything checked out ok. She did great until about age 4 when she would get tired all the time. She would sleep 12 hrs at night and nap 2 hr a day...she still will at almost 11 yrs old. Her murmur was first heard at age 6. It went from a 2 (out of 6) to a 4 in 2 months (now you dont even need a stetheoscope to hear it.) It was later seen on echo her aortic valve didnt form right. They said it was congenital. She was diagnosed with Williams Syndrome 5 months later. She now has aortic insufficency and will need a valve replacement in the coming years. She gets so tired so fast. Our hearts ache for what you have gone through with your baby boy. Thank you for spreading awareness for kids with broken hearts.....

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  17. I love the idea of educating parents on congenital heart defects! I am a heart mommy too. My daughter's heart defect was not diagnosed until she was 48 hours old. She is almost 4 now, and we are so thankful for our miracle!

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  18. This was a great post. I've NEVER heard of anyone around here getting an echo done in pregnancy. I know it's not the point, and a million others will tell you the same thing, but the twins are SO adorable in those outfits. Their closets must be STOCKED! :)

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  19. I can't imagine what you've gone through or what Cora's parents went through. Or any of the others. I am a mother/baby nurse and just this week it was passed that we would start doing the pulse oximetry on ALL of our babies to detect any Congenital Heart Diseases. A step in the right direction, but here in Charlotte, NC & Huntersville, NC all of our babies will be tested.

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  20. Megan, your little angels are so adorable! My heart breaks for little Cora and her parents. I pray God will help them through this trying time, ease the way for them (if possible), and lift them up to a plateau of happiness again.

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  21. Thank you!I will pass on this education. I thought they always looked for it. I'm glad to know the truth...thank you!
    Twins are adorable as usual, too!!!
    Cathie
    www.walkinginhisplan.blogspot.com

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  22. Thank you so much for writing about this. I am having my baby girl in 2 months and will definitely be requesting this test be done before we leave the hospital!!

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  23. We didn’t find out until my daughter was a week old, her pediatrician detected a murmur, sent us in the next day for an echo (1st worst day of my life…second was telling my husband via satellite phone while he was in Afghanistan about her defect & listening to him cry). The on-call pediatrician in the hospital did not detect it. Granted, my daughter’s normal pediatrician listened for a good 10 minutes before he came to the conclusion it was probably serious & needed to be looked at the next day at the latest. If we decide to have another baby (we are scared, just like you & Brent were), we will DEFINITELY be having an echo while I’m pregnant, and I’ve encouraged everyone I know to look into it, too. I don’t know if it would have made things better to have sent my husband off to Afghanistan knowing she had a defect (he left when I was 22 weeks), I think knowing prior would have given ME time to process, rather than a rush of googling, doctor appointments & phone calls. Bless you all.

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  24. I can't agree more. My husband was diagnosed with a CHD in his 30's when he was electricuted. His doctor told him most people die of his type of heart in their childhood because it goes undiagnosed and it was a miracle he is still alive. Very scary to think about!

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  25. I'm so glad you're highlighting this. I learn so much from your blog.

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  26. Megan,

    I found your blog the summer of 2010, right after Cohen had gone to Heaven. My son at the time was 4 months old, and reading about your journey and your grace was both eye-opening and amazing. I'm still amazed at your strength as I read your blog daily.

    My husband and I got pregnant with our second child late last summer. When we went in for the big 18 week gender ultrasound we found out that our next son had a "spot on his heart." The next week we met with a Perinatal Specialist, who confirmed that he had Hypoplastic Left Heart Syndrome. He went to Heaven on Tuesday, December 13th.

    I think that finding your blog that summer was meant to happen. After what we've gone through, I have looked at your blog over & over for comfort and encouragement. I'm so blessed to have one healthy son, and hopefully one day I'll be blessed with another child with a healthy heart. Seeing your beautiful twins gives me hope. I just know that Cohen and Luke (our angel baby) are friends & having a ball in their eternal home.

    Sorry for the book!

    Sincerely,
    Hayley Mosely

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  28. Our sweet baby boy was born with a congenital heart defect, Tetralogy of Fallot. We did not know about his defect before birth despite having had mulitple ultrasounds due to other pregnancy complications. His defect was confirmed whe he was 36 hours old. He underwent open heart surgery at 9 weeks. While it is very likely that he will under go another open heart surgery in the next couple of years to replace a valve, we feel so blessed to be able watch our 16 month old busy boy grow!

    Since his diagnosis, it has become a passion of mine to spread awareness about CHDs. 1 in 100 babies will be born with a CHD, about 40,000 a year. That's a lot of little lives, and yet there is so little done to bring about awareness. I am actually working here in Phx with a couple of other heart moms to pass legislation that will require babies to have Pulse Ox testing done before they are discharged from the hospital after birth. It's a quick non-invasive test and only costs about $7, yet has the opportunity to save lives.

    Thank you so much for honoring the life of your little boy by brining awareness! CHDs are life changing not just for the babies and children whom they affect, but for the families of those kiddos.

    From one heart mom to another xoxo

    P.S...Owen Simmons' (who is on your sidebar) mom and I are good friends, that little boy is a walking miracle!

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  29. So glad you are bringing awareness to this. I never gave it a second thought when I was pregnant. Knowledge is power!

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  30. I read your post, and then Cora's story, last night. At 18 weeks pregnant, I sat and sobbed and sobbed and sobbed. So much that at my OB appointment today, my OB noticed my stuffiness and asked if I was sick.

    My heart absolutely breaks for you and Cora's mama. And all the other mamas who have had to go through this.

    Thank you thank you thank you for bringing awareness to CHD. It has opened my eyes so much. My heart is heavy for all of the angel babies. But I love seeing your twins in red for their big brother. What hope it brings!

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  31. Megan-
    I have been reading your blog for about a year now but this is my first time to comment.

    Our son was also saved by a pulse ox machine and by a miracle from GOD. He was born a few days after his due date and weighed 9lbs 1oz. It just so happened that there were a lot of new babies born the same day and so they had to pull a NNICU RN to come work the new born nursey. By the grace of god she was Carter's RN. She noticed that his pulse in his lower extremities was not as good as the pulse in his upper extremities. To make a long story short, he ultimately had an echo that indicated that he had severe Mitral Valve regurgitation and as a result pulmonary hypertension. He had multiple echos in the days following and they just kept getting worse. He had numerous tests to look at his heart to see if he had any congenital defects and they could not find anything physically wrong with his heart. We were facing a heart transplant, but one of teh cardiologists suggesting treating him for myocarditis on the off chance that it was an infection causing all of his issues (despite the fact that they had tested him for all the viruses and bacterial agents that cause it and the tests were negative). It worked...something worked. Our cardiologist still calls him one of God's miracles and is still unsure of what caused him to be sooo sick and in a matter of 24 hours turn the corner so quickly. One of the Neonatologists told us that had we taken him home, he very well could have been a SIDS Victim. Mainly because he looked so good. He was nursing well and gaining weight. He didn't have the appearance a baby with cardiac issues or myocarditis usually presents with.

    I commend what you are doing!!!
    Sincerely, Amy

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  32. hey so i read this post last week or so when you posted it. I thought to myself does St. Michael do pulse ox test before we send our sweet babies home. Today i sat down and had a talk with our Nursery nurses and they said we do and have for the past 2 years bc of this reason. Before each baby leaves they put the baby on a pulse ox in two different places and follow certain orders if below 95%. Just thought you would be proud of little ole T-town!

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