He was given less than a 50% chance of surviving. In addition to the hernia, one lung was the size of a nickel and the good lung had a leak in it. He had an infection somewhere in his body and his heart was weak. He only scored 1 out of 10 on his APGAR leading so suspicions of brain damage and testing has begun to see how severe it is along with numerous other tests to see what Maxwell faces in the future.
He was immediately put on ECMO which has been keeping him alive. However, they need to proceed with surgery whether he is still on it or not so they will begin the process of trying to wean him off of it, as risks are very high if he continues on. Infants in this condition typically stay hospitalized 6 months to a year so Maxwell still has a long road ahead of him. But we pray he will continue fighting and for the time to quickly come that his parents can finally hold him in their arms.
His father, Joshua, goes to school full-time and his mother, Jessica is the sole provider. She normally works from home taking care of her other two little boys, Beckham-4 and Lincoln-2, but will need to cut back hours due to her being there for her precious newborn. All support is greatly appreciated!
Swainston Family - Fall 2012
Big Brother Beckham- he loves visiting Max and will read him stories
Big Brother Lincoln - he is too little to be allowed in the NICU and still has not been able to meet his little brother
Ready to go to the hospital!
Max makes his arrival and is handled by great people
Set up on ECMO
Though he was heavily sedated, he held tight to his mommy's hand
We love you Maxwell!
Hi! My name is Tracy and I live over in Wyoming. I came across your blog today from a fellow CDH parent on facebook. I am a mom to a 9 year old survivor of CDH and he was life flighted to Primary Children's over 9 years ago. They truly are miracle workers at PCMC! I also represent a CDH support group, CHERUBS! Please see our facebook page, https://www.facebook.com/cdhsupport and join our forums at, http://www.cherubs-cdh.org/ or www.cdhboards.org. We do mail out hope totebags with CDH info. and gifts for Max upon joining. We also have a wonderful UT state representative, Josh Hensley, and he can be reached at utah@cherubs-cdh.org. You are not alone on this journey. Praying for Max's continued healing, recovery and strength! Fight Max fight!!
ReplyDelete(((HUGS))),
Tracy, from CHERUBS
i just took a class on infant massage that is such a great way to bond with your baby. if you can find someone that can teach you. for babies with special needs that cant recieve massage they can teach you containment holding. it may not sound like much but just having your hand on your baby will do him sooo much. keep up your faith. and my prayers are with your family.
ReplyDeleteHang in there. I'm also a mama to a baby that wasn't "supposed to live." He didn't have CDH but he has an extra of his 18th chromosome, trisomy 18. Take it one day, one breath at a time. And it's okay to cry and scream sometimes. Praying for you guys. And since PCMC is our "home away from home" maybe we can meet up there sometime.
ReplyDeleteHello, My dear nephue was cdh was born in Jan this year at the u of u. My sister also had cdh in 1981 and she only lived 79 hours. My how tecnology is blessing the lives of cdh babys today
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