Grammy's Update Day 7

Happy One Week Birthday Ayden!!!!  It's amazing 1 small life could go thru so much in just a week.....it seems so much longer. 

 I am so glad you are my family, friends, brothers & sisters in Christ!  Because of this I know you are forgiving of my mistakes and are now aware that I misspell things just like I mis-pronounce them :)  It is good to know the heart of the person writing or talking!!!!!!  I can't help but think how often though we might not extend this favor to others.  To date I'm aware of this horrendous 'blooper' from last update: our God is omniscient NOT ominous.  This ranks as the greatest error of my life!  I trust each of you knew what I meant & thank you to the one who alerted me.  Please forgive me.  The Lord has assured me He not only knows my name but also my heart....nothing is hidden from Him & He was not offended!  What comfort in my discovery for I am mortified.

I had the opportunity to talk with the dr. who is not the optimistic sort yesterday.  After inquiring about each other I asked him what he thought of Ayden; his response was 'he seems to be improving everyday'.  This is HUGE given our communication with him thus far :)  His concern is his lungs.  They must improve for the original surgery to happen and they are going in today and look around.  This will be done thru the tube that is already there so that is good.  Ayden's output yesterday was good & they have decided it to be premature to put him on any dialysis yet.  The swelling is reduced!!  His arms can be bent, his body is not so barrel like, his ears were more recognizable!!!!  What a welcomed difference for us!  He still is puffy but this is so much better.  There still is a good amount of swelling in his head (making a fluid pillow for him) but his pupils still respond to light when they check.  

Chris is feeling much better & he stayed the night with Ayden.  Aubrie & Elijah are missing their mommy terribly and are in need of some normal time....as if any of us know what that is now:)  Deidre met their teachers yesterday & took them to their practices.  Chris' mom & sister have returned home.  While this is different we all are adjusting.  Another baby was admitted last night with the same syndrome-her name is Makayla.  Pray we are an encouragement for them.

More soon.  Thank you for praying.....it is such an encouragement & we feel the effects!  Thank You Lord for another day with Ayden!!

Love,

Gay & family

Grammy's Update - day 6

Well it has been days since I've had an opportunity to write. For the benefit of those not following Deidre on Facebook or not on Hope's email list I'll need to try to recap the past several days. Ayden is 6 days old today!!! Each morning I thank God for another day with him! Things change so fast with him. Since you last heard from me we have experienced thinking he wouldn't make it thru the night (this dr. is not an optimistic sort) to good numbers with everything else in between. Things that have been done include: adjusting the Cather, changing the circuit from the ECMO (life support)-he was off life support 1 1/2 mins., exploratory procedure looking for the bleeder, going in the chest looking for clots, cleaning the chest tube, & I'm sure I'm forgetting somethings. Things get blurred... His kidneys are not functioning. Different diuretics have been tried & they have tried drawing fluid from him. Yesterday was the first time we thought this had turned around but apparently not. A kidney specialist is now among Ayden's drs. and they may have to do some form of dialysis. I don't know for sure what this means because days ago when this was becoming a greater concern what I understood is dialysis is notreversible& would mean pending transplant. Perhaps having ECMO do this avoids this I don't know. Pray for his little kidneys too. He is swollen. Doesn't look like the little boy we met on Saturday. He has a halo of swelling around the back of his head (this may be where the person who first drew an alien got the idea), his ears have looked like Shrek's-appearing more of a small funnel, he's had a swollen lip resembling a fighter-which he is, his body issimilarto an encased sausage link. He does not have bendable arms, appearing more like the doll he is. You would think his beauty would be hidden with all this but it is not!!!!! His nurses are wonderful. Today we are concentrating on the kidneys. The swelling has to go. They are keeping watch for neurological damage - this is a concern. The bleeder seems to have slowed but things like a clot could affect this also. Blood pressure has been top of the list. This seems to be going in the right direction. We were in the 30's, have gone into the 80's, and mostly now are staying in the 60's - which they are satisfied with. The cardiologist said 3 things are to blame for low blood pressure.....2 of them have to do directly with the heart itself which ECMO takes care of and the third is a lack of resistance in the arteries which can be caused by infection......he is on antibiotics.



We are doing ok. Deidre's blood pressure has been high. This is something she has trouble with in the past & a concern now. Pray for her physical healing. This is more in the way than anything else for her. Emotionally, she's a mom experiencing peace beyond understanding. She told me yesterday she can tell others are praying for her. Thank You!! Chris has been fighting allergies or a cold & has limited his time with his son. This is hard on him....he wants to be with him. I'm exhausted & swelling and thankful to be both. I just want to follow whatever path God has for us & all others connected to us :) I am convinced when something happens to someone if you know about it, it is part of a plan in your life too. That's just how ominous our God is! He works ALL things! I thank Him for the knowledge I have gained into the lives of others who have children going thru life & death things. I find myself feeling very arrogant, blind, & selfish in retrospect of this journey. Does the Spirit enlarge our compassion in trials? Yes! Does He make us more like Jesus when He does? Absolutely! I am thankful for all He is showing me, the lives of those hurting around me, the men & women who devote their lives to saving others, and for the body of Christ which is linked across the world & are at this point in time praying for us. Pray we minister even as we are ministered to. Ray & the boys are doing whatever they need to do and the children miss their mommy & want to be with Ayden.



I hope this makes each of you feel more in the loop. We cherish your love and prayers......especially when you aren't hearing from us because it is then I'm not able to update you.


hugs!!!


Gay & family