Again We Say AMEN, but It's Still Raining...
>> Tuesday, July 14, 2009
Here's Mr. Cutie-pants Max at 35 weeks...just a glimpse of that little face. He weighs about 4 pounds, 13 oz right now! He ALWAYS puts his arm and/or hand in his face, and it's getting "tighter" in there, so the shots are tougher for the ultrasound tech to get. Still, we sooo appreciate her giving us the 3D images every time, it's unnecessary and just a kind thing she does for us.
Now...
We had our last appointment before leaving for Florida yesterday afternoon. My non-stress test was great, Max was moving like crazy and his heart rate is steady and strong. Our ultrasound was a different matter. After the regular brain/head check, chest cavity check, etc, our tech moved onto checking the heart. Until now, his heart has been perfect, in spite of all those organs (specifically Max's stomach) pushing up against it. Today, however, there was a change. The left side of the heart is pretty squished, specifically the left ventricle (lower right of the four chambers). Also, the aorta looks about half the size that it should be...4mm instead of about 8mm at this point. This is potentially very bad because the aorta is responsible for taking the oxygen rich blood back to the rest of the body. Right now, when the blood is pumped from the right side into the left, some of that blood is shooting/leaking back over to the right side because of the small size and pressure on that smaller left side. There's no way to know how serious this is until he is born, and the other organs are out of the way. The heart would then have the opportunity to "open up"...hopefully!!! A positive detail amongst this news is that although the heart is under some distress, the strength of the blood flow through Max's body is good. That means that even though too small, his left ventricle and aorta are still working hard and getting the job done. Go Max Go!
Jordan and I were riding in the car listening to Casting Crowns "Praise you in this Storm" yesterday, and Jordan was saying how that should be our theme song. It talks about trusting God, saying Amen to his will, but wondering when the storm will be over. Man do we feel that! So, a day later, I am feeling at peace with God's will for us, but I am SCARED. I want to bring Max home. So, again we say AMEN, and we're still waiting.
Thanks for your thoughts and prayers, friends and family...
Claire Griffin
We had our last appointment before leaving for Florida yesterday afternoon. My non-stress test was great, Max was moving like crazy and his heart rate is steady and strong. Our ultrasound was a different matter. After the regular brain/head check, chest cavity check, etc, our tech moved onto checking the heart. Until now, his heart has been perfect, in spite of all those organs (specifically Max's stomach) pushing up against it. Today, however, there was a change. The left side of the heart is pretty squished, specifically the left ventricle (lower right of the four chambers). Also, the aorta looks about half the size that it should be...4mm instead of about 8mm at this point. This is potentially very bad because the aorta is responsible for taking the oxygen rich blood back to the rest of the body. Right now, when the blood is pumped from the right side into the left, some of that blood is shooting/leaking back over to the right side because of the small size and pressure on that smaller left side. There's no way to know how serious this is until he is born, and the other organs are out of the way. The heart would then have the opportunity to "open up"...hopefully!!! A positive detail amongst this news is that although the heart is under some distress, the strength of the blood flow through Max's body is good. That means that even though too small, his left ventricle and aorta are still working hard and getting the job done. Go Max Go!
Jordan and I were riding in the car listening to Casting Crowns "Praise you in this Storm" yesterday, and Jordan was saying how that should be our theme song. It talks about trusting God, saying Amen to his will, but wondering when the storm will be over. Man do we feel that! So, a day later, I am feeling at peace with God's will for us, but I am SCARED. I want to bring Max home. So, again we say AMEN, and we're still waiting.
Thanks for your thoughts and prayers, friends and family...
Claire Griffin
14 comments:
I will be praying for you and your family as Max enters this world and begins his fight against this CDH monster. CDH babies are tough. Max will prove to us how strong they are and beat this monster. Thinking of you
Kristy, mum to CDH Angel SKYLA 13/10/07-13/06/08 Australia
http://skylacdhbaby.blogspot.com
We are praying for your family as Max makes his entrance into the crazy world of CDH. These babies do miraculous things every day and I am always constantly amazed at their will to survive.
"Praise You in this Storm" has brought me through some of the darkest moments in my life. It's an amazing song with an even greater story behind it.
God truly is an awesome God. No matter what your journey is He will see you through it.
We are here if you need anything.
With love and lots of prayers...
I am so proud of you momma and poppa G. I am so proud of Maximus.
And as much as I believe in the beautiful purpose of God, I am still so sorry when I know my friend is scared...
Poppa God- You are truth and life itself. Breath your very word into Max.
I really believe that the full purpose of Max's life will be complete in every single way.
your sister, Shanda W
thanks for keeping us updated. i am praying for you, jordan and max every night when i put our claire to sleep. it's amazing what little fighters babies are through unimaginable hardships. we were told claire would never even breathe on her own and she has come so far and exceeded the doctors predictions. one song that has helped me so much is never let go by david crowder band. "in joy and pain, in sun and rain, you're the same. no, you never let go."
I JUST FOUND YOUR BLOG WHEN I WAS READING AVERYS COMMENTS. I AM TO HAVING A CDH BABY HERE PRETTY SOON. WELL BY MONDAY LETS HOPE.....OUR BABIES WILL BE SO CLOSE IN AGE....I WILL KEEP UP WITH YOUR STORY AND KEEP YALL IN MY PRAYERS....LOTS OF LOVE TO THE BOTH OF YALL......CANDICE
Claire and Jordan,
I know that I don't say it often enough, but I am SO proud of both of you. You ARE what you say you are, even in the toughest circumstances. I stand in AWE of the amazing love of God that works through you, and I know that He put Max with just the right Mommy and Daddy. You are preparing for a wonderful journey, and you will both be exceptional, because you hold the hand of the One who can do ANYTHING!!
Max,
I know them both well, and you're amazingly blessed!
I'm blessed to call you my children.
Mom
Your strength through this is such a testimony to so many people. I know that inside you must feel broken sometimes, but continue to allow God to be your strength. The song that I love to listen to in difficult times is, "His Strength is Perfect" by Steven Curtis Chapman. It's times like these when we really see how powerful He is and "His strength in us begins when ours comes to an end. He hears our humble cry and proves again that His strength is perfect"! I will continue to keep the three of you in my prayers. God wrote this chapter of your life and will take care of all of you. Just continue to trust Him and know that He is in control and will never give you more than you can handle! Thank you for the example you have set before me as a Christian! Love, Kim
sometimes it is so hard to praise during the storms.. i remind myself of that daily. God gave us our Maxs for a reason. :-) Praying for you guys!!!! Hopefully the rain will let up in the near future.
My thoughts and prayers are with you during this difficult journey. You certainly are the right people for this job - your attitude and faith will carry you far and Maximus is so lucky to have you two as his parents.
we are all keeping you in our thoughts and prayers!... I was talking to Karen today about Max and she was very touched by his story. She would love to help!!! http://prayerchild.org/ The Prayer Child Foundation.. So if you would like i can give her your info so they can start helping out. (they can help with bills and flights and whatever you need) just text me if your interested.
Hi Claire,
Found your blog from Avery's comments. I never heard of CDH until recently and ever since I did more research about it and learned one most important thing that most doctors pointed out is Where to deliver CDH baby. Not all hospitals are equipped and have specialists to care for CDH. To get to the point, I came across this site
http://www.realhopeforcdh.com/members.html a 92% survival rate for CDH babies born here at Shands.
I understand we cannot change God's plans... I will start praying for you and Max.
Dai
Dai- That is Dr. Kays and that is actually where Claire and I will be delivering the baby! :) We found Dr. Kays online and went out to Florida to meet him and decided that we wanted to go there. Thanks for the great info though!
just had a little break from work to catch up on your posts and YES! Glad you found Dr. Kays. ~Dai
Claire....I'll be thinking of you guys and praying for ya!!!!....we're due right around the same time...pretty exciting regardless of the obstacles our babies will have to overcome.
Chanda....aka "Ireland Rose's Mom"
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