Updates are hard to keep flowing when there is much going on, so I apologize in advance for the lack-thereof. Since Aiden has arrived all of Children’s best specialists have been “putting the puzzle together” and we’re finding out Aiden is one pretty unique little guy. Most of Aiden’s organs are backwards but working perfectly. Aiden was expected, giving his condition, to have asplenia or polysplenia with malrotation. Neither of which are the case. He has been keeping the CICU nurse and Tracy busy with his diaper changes which means there are no internal “kinks”, nutrients go in, waste goes out. He successfully passed his “room air test” where he was able to breath perfectly fine on his own so they removed his breathing tube (something we also didn’t expect this early). We had a “scare” today with his heart rate going up over 200bpm twice, Aiden has an SVT (basically he has two firing points giving electrical signals when there should only be one). They are starting him on Digoxin which could take a few days but hopefully will resolve the situation. I’ve asked if the surgical route we’re taking will fix that problem, it will not. The surgery will repair the heart itself making it’s components work for the rest of his body, however if needed there are non-invasive and invasive (if needbe) routes we can go to fix the SVT. Tracy did get to hold Aiden today (i’m next in line, I gave her a few free turns) which activated “mommy mode”. We can’t pick him up anytime we want but we are making some good progress. They say he’s “operating within his defect”.
All medical specialists from Children’s Denver are meeting early this week to discuss the surgical approach we’re going to take and what we can expect from it. We are of course praying for the best of news. It has been extra beneficial that we are able to wait for surgery to have all of the specialists and cardiologists here discuss what each think to make an appropriate plan of action.
This morning I got us hooked up with a “Family Suite” at Children’s complete with a king-size bed, pillows and a shower. This beats the heck out of the couch (oh my FREEKIN BACK!). Best of all, it’s FREE. I love Children’s!!
Given all these miracles I can’t help but feel guilty for the other babies and kiddo’s in the CICU. There is one little preemie baby in the first room when you walk in that hasn’t had anyone there yet (that I have seen) and while I understand the reasons for that (parent’s need rest too!) I can’t help but feel bad. Our friend Ninfa brought him a Teddy which they have in his Giraffe.
It’s nurse switching time and also time for a real dinner. The only thing about Children’s I do not enjoy is the food. With that God Bless all our little kiddo’s.
Matthew 17:19-20 "For truly I tell you, if you have faith the size of a mustard seed, you will say to this mountain, 'Move from here to there,' and it will move; and nothing will be impossible for you."We founded a Facebook group called "Praying for Children with Health Problems" - if you have a Facebook account and would like to receive notifications and praise reports on children with heath problems in need of prayer please visit us below:
I am praying for many more miracles
God Bless you all
Tracy i am so happy you got to hold baby aiden today,I pray for you every moment that the Lord be with you Levi (my son) and baby Aiden.i pray that he is with you always to keep you well rested safe happy and healthy.I pray for Grandbaby Aiden to keep touching him and being right next to Aiden, I pray for my son Levi for the lord to keep him strong and their for you and Aiden when you need him and i stop every moment that i can and thank the Lord for all that he has done and what he has given me.I am with you all tonight and always in thought -my heart-my prayers i love you all so much and i will always be greatful to the Lord for all of you and i am blessed as i end know i am so happy & thankful for you tracy you levi and Baby Aiden words can not explain.God bless all 3 and my prayers will never end or my love for all of you love to all mom xoxoxoxo P.S Thank you Lord for my Tracy-Levi&my Grandbaby Aiden Matthew
I am so happy for all of you. It sounds like you had a great day with Aiden and it sounds like he is doing wonderfully! Miracles abound with our heart babies. God is definitely watching over all of them and all of us!
My husband is very jealous of your accommodations. He got to sleep in a chair…they definitely make it difficult to sleep in the PICU in the Children’s Hospital where Hope is staying…although the food here is not too bad. They have Starbucks…what else do you really need besides coffee and their delicious brownies!
We are keeping you in our thoughts and prayers.
WOW! There’s another thing I will be discussing with our local Children’s Hospital! The PICU accomodations left a lot to be desired.
So glad everything is going as well as can be expected. Little man is quite the fighter. So happy Tracy got to hold him! SO IMPORTANT.
Give the little guy that’s all alone some love from me if you’re able to do so. That always made me so sad to see when Drew was in the hospital.
My Dear Baby Aiden Matthew, Grammie Winnie wants to write you tonight to let you know how special you are to me.O how i wish i was their with you to touch you pray over you and just sit their and watch you, Baby Aiden my prayer are with you that the lord keep you safe and be with you every moment and i cant waite to see you.Honey you mean the world to me,I pray for your mommy and daddy every moment i love them just as much i pray that the lord keep them rested,safe and that they feal the power of him that is with them and have been from when you started in your mommys belly,your mommy and daddy are very special and the lord gave you to them.know that your mommy and daddy has been waiting for you a long time and both of them have gone above and beyond for you and not all children have wounderful parents like you thats why the lord has given you to them and them to you.You are so special to your mommy and daddy,Belive me Baby Aiden the lord is pleased and will bless you all,So as tomorrow comes he will put a special peace on all of you keep you all safe and strong you are all so special to the lord that he will never leave any of you. Aiden you are in a special family that the lord has touched and always remember I love you my Grandbaby Aiden I love you Tracy I love you Levi all my thoughts prayers and soul are with you all,Always and forever. God is with you and will always keep you all safe and you will feal his arms around you all (thank you Lord for all your love to Tracy,Levi and Baby Aiden and the great things to come for all of then) AMENlove all 3 mom xoxoxox