Chaper 5: Max Throws Us A Curveball
>> Tuesday, August 25, 2009
First of all, thank you to EVERYONE that prayed or sent up positive thoughts today for Max and our family. Last night was probably the longest and worst night of our lives. Everything was going fine until Max just CRASHED...and when he decided to crash, he committed to it. We went from talking about extubation to being on ECMO in a matter of 12 hours. That is one side of the card to the other.
As far as how he is doing now? Well, we just left the hospital and Mr. Max is stable. Stable doesn't mean that he is getting better or doing well. It just means that they have been able to get a handle on things. Right now, Max is doing ok, and his numbers are going in the right direction. The doctors are happy with what is going on right now, and are looking forward to a good night. Please continue to pray and pass this blog around to those you know would care if you want. We will take as many prayers as you want to give us.
Max's situation is still very, very serious, but things are looking a little clearer for us than they did 12 hours ago. Please just pray for healing. Pray against pain. Pray that he just gets better. Pray for peace and rest for Claire. This is hitting us really hard, and she has enough on her plate as it is...God has a good and perfect plan through all of this though.
These are really trying situations and Claire and I are determined to use them to refine our character and faith in our God and believe that He will still use this situation to benefit Him and those that know Him. We are praying that you all see God's love in this crappy chapter of Max's story, and understand that as much as we love Max...God loves each and everyone of you even more. We love you guys, and thank you again for reading and being awesome. Have a great night, and Claire or myself will update things as soon as we know anything. These our our verses that you can pray with us if you want:
2 Corinthians 12:9 - My Grace is sufficient for you, for my power is made perfect in weakness.
Romans 8:26 - In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. (emphasis added)
38 comments:
Praying for max before I sleep tonight:)
We have been praying for ya'll ever since I read the blog at noon today....my heart is aching for you...Just remember, God promised that HE would never leave us....I pray that you will feel HIS comfort and peace tonight and get some rest....and I pray that Max will feel HIS healing power on his tiny, little body!!
Stay close to God and remember that He loves Max even more than you do. The verse that has helped me through many events in life is Philippians 4:13, "I can do all things through Christ who gives me strength." God will provide the strength that you need. I am praying for your family and have many others praying also. You are loved and supported by many.
I am so glad that Max is stabile and resting on ECMO. I know he will continue to improve from there! I am praying for his lungs to heal quickly and for the rest of his recovery to be smooth. I agree with you, God does have a perfect plan-I got a little glimpse of it with my baby girl. Dakota was born unexpectedly 7 weeks early on Christmas Day. Dr. Kays was supposed to leave for vacation, but being the awesome guy he is, he stayed to stabilize Dakota. Dakota started crashing and needed to be put on ECMO. I later found out that Olivia, the other CDH baby at Shands at the same time as us, crashed a few hours after Dakota was put on ECMO. Dr. Kays was able to stabilize her after several tries and he told the parents that Olivia would not have survived that night had he not been there. Dr. Kays was only in the hospital that night because Dakota had to be put on ECMO, otherwise he would have been on vacation. So my baby struggled more than I expected or wanted her to ... but it ended up saving another baby's life and now both girls are home and thriving. I know Max will also make it through this struggle a stronger and more awesome guy than he already is! My thoughts and prayers are with you!!!!
Love,
Jennifer
Claire and Jordan, right before Ireland was to be born, I wrote a post that Max and her were going to inspire everyone. I still believe this. I've been catching up on your blog and I am praying like crazy for you guys. Of course, I'm crying too because of course, we never thought Ireland would begin right off on ECMO...and well, Maximus has been our little boy inspiration as we've been dealing with our own "stuff". ...This CDH stuff sucks like no tomorrow. It is so unfair and I can totally feel your pain. I do believe that God is with us and hearing our prayers. I am soooo very sorry that this is happening to you guys. And I know how easy it is to feel guilty, as well. Our family has been dealing with this. That part of your story is only too familiar. .......Once again, I'm just going to say just as many prayers for Max as for my Ireland. I truly believe he will pull through...he's shown such a huge fighter spirit already!!! ...Chanda <><
Claire and Jordan.
I can't think of anything that is more appropriate than this poem, at this time. I've changed it just a little. I hope you recognize it.
One night a very little boy had a dream. He dreamed
he was walking along the beach with the LORD. (In dreams you can do anything.)
Across the sky flashed scenes from his birth and life to this point.
For each scene he noticed two sets of footprints in the sand: one belonging
to him, and the other much bigger belonging to the LORD.
When the last scene of his short life flashed before him,
the very little boy looked back at the footprints in the sand.
He noticed that many times along the path there was only one set of footprints.
He also noticed that it happened at the very times when he was the sickest and most in danger for his life.
This really bothered him and he sent thought question to the LORD about it:
"LORD, you said you'd walk with me all through the hardest parts of my life.
But I have noticed that during the most worst times in my short life,
there is only one set of footprints.
I don't understand why when
I needed you most you were not there to help me."
The LORD replied:
"My little son, my precious child,
I love you and I would never leave you.
During your times, of suffering, when you see only one set of footprints, that is when I picked you up, wrapped you in my robes and cuddled you close to me and carried you through the worst of what you were enduring. You are my most precious child and I love you."
im on my knees praying for little Max to get better, im praying for all of you to have peace and rest! love you guys!!!
the prayers will continue for you and your little fighter! Your faith is a beautiful gift for those of us checking in on you! May God continue to bless us all with your little guy!
We have been following your blog for several weeks -- we found it after getting our own CDH diagnosis. We have been so encouraged by Max and will continue to pray for all of you --For healing and comfort and peace. I can't imagine how hard these last few days have been for you all. It is a comfort knowing that our Father loves Max more than we can imagine and that in His good providence He does all things well.
God bless.
Sarah Estes forwarded me this blog. I read about Max, and tearfully, sat down at this moment and prayed for him, for you two, and for the miracle of life that only God provides. I prayed for peace and for health. I don't know you but know that there are families everywhere praying for your little boy. God will bless your faithfulness that I can tell is strong by reading your words. Thank you for sharing your story.
Continued prayers for Max as his body receives the rest he needs to fight and win his battle with CDH. My daughter didn't go on ECMO, but I do understand how frightening CDH is and how unfair.
Love and prayers to Claire, Jordan, and Max
carepages:Emilyishere
Great scriptures, will continue praying with you and for all of you to feel his peace thru your trial.
It's so encouraging to hear that tonight has been relatively calm and steady. Max is such a strong boy and you two are such amazing examples. Big plans are in store for you three, I just know it.
We are sending lots of well wishes your way. I hope you can find some time to relax as ECMO is a up and down road as Chanda and myself r finding out. Need to vent feel free to contact us.... Much love Max!!
Brady's
We love you. You have, and have had, our prayers.
Katie, Mike, Trin and Kyri
prayers are continuing and spreading the request to others.
Continuing to pray for you and your family. Babies can be very resilient- don't lose hope!
Ever since Mike & Lacy sent out your prayer need you've been in my prayers. I KNOW we serve a miracle working God! He is able to do exceedingly and abundantly above all that you could think or ask. I will continue to keep baby Max in my prayers.
ECMO can be a very scary thing, but it saves so many CDH babies. I know, personally, how difficult it is to go thru, but do not give up hope! CDH babies do amazing things all the time, and Max has proven that he is a fighter!! We are praying hard for your Max, for healing of his little body and peace and strength for you two as you travel this road. Please know that Max is being lifted up to God from all over the world.
I wanted to share this verse with you guys! It passed on to me while Addison was in the ICN on EMCO. It really made a difference for Jason and I.
2 Samuel 22:29
You, Lord, are my lamp,
the Lord turns my darkness into light,
With your help, I can advance against any troop,
with my God, I can scale a wall,
As for God, his way is perfect,
the Lords word is flawless.
He shields all who take refuge in him,
for who is God besides the Lord,
And who is the rock besides our God,
It is God who arms me with the strength,
and keeps my way secure,
He makes my feet like the feet of a deer, and causes me to stand on the heights,
He trains me for battle,
my arms can bend a bow of bronze,
You make your saving help my shield,
Your help has made me great,
you provide a broad path for my feet so that my ankles will not give way!
Always thinking of you guys! Praying hard!!
jordan, i was in your mom's Orange Church and i want you to know that even before Max was born i have been on my face for him and for the rest of you. i am so pleased and blessed to see your faith and your heart towards our Jesus. you have really inspired my heart by your love for Him, your trust in Him and your tireless devotion to keeping us abreast of his progress. your mom is my family and that makes us kin, please know that i am lifting you all to Jesus every day, all day long...
Sitting at my desk at work and praying so hard for little Max and Ireland and Joseph(Ireland's neighbor)...the list keeps growing (sigh and sad).
To be honest, I've never heard of this horrible CDH thing until I saw "Pray for Baby Avery" from Matt/Ginny 99balloons blog. My heart was already broken from Eliot's story. Now, I have learned so much about CDH. Stories like Avery, Jackson, Max, Ireland, make me love every seconds of my life. I recently made a promise to myself not to complain on small things anymore. I will forever appreciate life and forever greatfull for my two healthy children. I know this is not a time to express myself but I just wanted you, Jordan and Claire, to know I fell in love w/ your boy and he inspires me a great deal. I will not stop praying for Max until he is home and thriving.
Love you guys,
dai
We are praying for your family and Max. Wow, reading the last couple of posts brought back so many memories with Olivia. She also had a pulmonary hemorrhage in both lungs, but while on ECMO. Dr. Kays is incredible and you are absolutely in the best care. It is no accident that you chose Florida. Please feel free to email me if you need anytyhing at all or someone to talk to. Lifting you up....
Jacy, Olivia's mom
I just found your blog through Olivia's. My son Noah was also born at Shands with Dr. Kays- he is the BEST person to take care of your precious Max. God uses that man to do miracles! Our son is now almost 3 and was RCDH. We will be following & praying with you!
Psalm 3, 139:16
Sarah, Mommy to Noah RCDH
We are praying faithfully!
Claire and Jordon,
I was forwarded a prayer request for you and Max by Jessica Singletary. I am the mother of a CDH baby and my heart goes out to you for the valley in which you are currently walking. You won't see it so much right now, but when you look back at this experience, you will KNOW that the Lord God walked with you so closely and held you and protected Max in ways that you can't recognize at the moment. I will pray fervently for Max. My sons, Jack and Ned(my CDH), always pray for the other babies who are struggling like Ned did. I wish I could take this fear away from you, but, for me, going through the fear was part of me finding my dependence on God. I am praying that God will use the ECMO to allow Max's body to rest and that as he maintains stability and begins progressing in the right direction, the two of you can find peace. I know how it breaks your heart to see his little body in such a struggle, but keep looking up and for the promises of God and seek solace in KNOWING that His plans for you are for good and for a future. God Bless you both and baby Max.
just wanted to let you know that i'm praying for Max. I am so sorry that yall are having to go thru all this after he was doing so well....but most of all i feel for that little baby boy having to go on ecmo....i pray that he is in no pain and that this ecmo is working and he will be well very soon....that is my prayer for him....i know how your heart hurts to watch him go thru this but just know that God is still taking care of him no matter what. I just wish so bad that no baby had to ever go through cdh, but the fact is they do and we dnt know why and can't understand, but one day we will and thats when we all get to meet our Lord......I am praying praying praying......love candice
another CDH mom to zach, 22months old. i want to let you know im thinking of you and praying for Max. i HATE CDH, its a monster, a thief, horrible! im so so sorry that you are having to be in the place, both physically and emotionally that you are right now. God is with you and Max. hang in there!
God Bless
This verse helped us while we were waiting for Nayeli to arrive and during her surgery. We are praying for Max.
Psalm 121:1-3
I lift up my eyes to the hills—
where does my help come from?
My help comes from the LORD,
the Maker of heaven and earth.
He will not let your foot slip—
he who watches over you will not slumber
Krista shared your blog and I have been keeping up with your family. My prayers are with Max. God is with him, he is not alone. Please God heal Max's body and comfort Claire and Jordan.
You are blessed to have found such a wonderful support group in these other families that have been where you are today. Lean on them when you need support and let them help you through this.
Thank you for keeping us updated as it is obvious you have many people who care so much about you and are praying for you.
Really hoping Max is okay. Thinking of you at this time! Come on Max you can do it!!
Hoping all is well!
Hi Claire this is Ashley Cluff I worked in the front desk at Rolfs when you and my sister Annie Johnson worked there, I found your blog from Audrey's, I'm praying for Max and a full recovery and you guys, a lady from my church had a daughter born with CDH, she loved Dr. Cromblehome in Cincinatti he does the muscle to muscle repair, it looks like your doctor has things under control but I felt like I should pass the name along anyway. GO MAX!!!! Your in our prayers
just checking in...praying for you little Max.
dai
Continually praying for Max!! God is with you, lean on Him! He loves you.
Dear Griffins,
I am so sorry you are having to fight the CDH monster. I have been following your blog for awhile now. I am touched by your story as my daughter had cdh. I am praying for God to show you the right way and to bring you and Max peace in this journey. He sounds like such a fighter! I bet he'll overcome this awful monster!
In tears and heartache,
Beth Houselog
CDH Angel mom of Sylvia
I have been following your story and praying for Max. I also pray for God to give strength to both of you since I can only imagine what you are going through. God bless you all and little Max.
Lucille L.
Claire and Jordan, I sent out a prayer request to all my Kindergarten parents. I had so many responses, I couldn't believe it. I have a wonderful group of parents, and everyone that responded said they were praying for Max and both of you.
I have been checking in morning and night since your "news" broke on Tuesday.
Love to both of you.
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