Hello Ava friends! We have some BIG news. The pandemic placed her surgery on hold. She was supposed to have it in April. Plans changed quickly! We have been bunker ed down just laying low. The doctor called about a month ago and put her back on the schedule. We went to her pre operation visit on Thursday, June 25th. It's been a very long and emotional few months. The unknowns, the scary virus and the waiting has taken a toll on us. Ava especially... she felt she was in a holding cell. They only allowed one parent into the hospital with her so sadly Brian did go, but had to stay in the Suburban and listen all from his phone.
Ava's diaphragm needed repaired for several years now. The doctors were just watching it because she has had seven major abdominal surgeries. They were not wanting to go back in until they felt her life was in jeopardy. However during her last CT (Oddly I believe her strange fluid build up was God shining a flash light on her insides saying... "Hey doctors. This is not good.") Dr. S pointed out that we needed to really start thinking about preparing our hearts and minds for surgery. His words were... "This surgery is Necessary. We want her to go into it strong and healthy. I believe it's time."
I prayed all day Wednesday for God to send me a sign this truly was "the time" to do her surgery. I prayed something like this... If this is your will let Ava have some sort of say in this decision. Well I got my prayer answered. She got to pick the date. She is past ready. She picked Monday July 6th. NINE DAYS FROM TODAY. Yes that soon! I'm writing today because it has taken us a few days to process this information ourselves. I think I can speak for Brian, Lexis and Emeline... we are all reaching out to God for prayers, we want Ava to sail through this repair surgery, come home and heal quickly. We are placing her in God's hands once again.
Here are a few pictures from Thursday. She now weighs 110 pounds and is 5'7 and a half!
So the plan... Ava's will have the old patch removed and another Gortex patch placed. This one will be a lot bigger. She has grown a lot. This is the reason her old patch failed. We can see part of the patch on the scans but you can also see organs migrating past it as well. No one can see this from the outside of course. She looks wonderful. The doctor does not know if she has any lip or diaphragm muscle in the back for him to sew the patch onto, so this is a specific prayer request. We need God to give him direction to the best option to stabilize her diaphragm wall so that this will be a more permanent fix. There are no guarantees. If he is not able to find a stable place they will then call in her plastic surgeon doctor. Ava and I also sat and talked to him on Thursday as well. We want a solid plan in place for our sweet Ava! She is so precious to us. We want all our T's crossed and I's dotted. So the plastic surgeon can preform a surgery that takes her latissimus dorsi muscle from her side and flip it to become her diaphragm. This surgery is VERY invasive and complicated. They would have to remove one of her ribs. It will take a lot more out of her. It has many more complications but it is the last resort. They are going in basically blind again. They told us it will be a very long surgery.
So GREAT news... Brian will be able to be with us for her surgery and hospital stay. I was very anxious about being all by myself because of the extra precautions with the corona virus. I cried happy tears when the nurse told me they had now lifted it and both parents were allowed. God answered my prayer! I need Brian. We are Ava's team... "TEAM AVA!"
Ava's mood has lightened since making the decision. That has made it bearable for me. It's so hard as a Mother to know your child is hurting not only inside her abdomen but it's causing her mind to be sad as well. She is afraid of course but we know that God will be with ALL of us. He cares and He knows our struggles.
1 Peter 5:7 Casting all your care upon Him, for He cares for you.
I will leave you with a beautiful video she made to celebrate (CHOP's) Children's Hospital of Philadelphia's 24th annual fetal reunion. (It was held online this year.)
You can truly see Ava's love for life and her zest for happiness as she thanked CHOP for giving her a fighting chance at birth. We will never forget all she's been through there or at the University of Iowa Children's Hospital. We continue to praise God for ALL he's done in Ava's life. We know that this is just another hill to climb. We will celebrate the Victory when it's won!
We would LOVE your prayers for her July 6th Surgery and for her protection from any illness that could be at the hospital! We need her restored and made whole again! The doctor estimates her stay to be about a week. We hope less. We know she is a FIGHTER for SURE!
God Bless you all!
Ava's diaphragm needed repaired for several years now. The doctors were just watching it because she has had seven major abdominal surgeries. They were not wanting to go back in until they felt her life was in jeopardy. However during her last CT (Oddly I believe her strange fluid build up was God shining a flash light on her insides saying... "Hey doctors. This is not good.") Dr. S pointed out that we needed to really start thinking about preparing our hearts and minds for surgery. His words were... "This surgery is Necessary. We want her to go into it strong and healthy. I believe it's time."
I prayed all day Wednesday for God to send me a sign this truly was "the time" to do her surgery. I prayed something like this... If this is your will let Ava have some sort of say in this decision. Well I got my prayer answered. She got to pick the date. She is past ready. She picked Monday July 6th. NINE DAYS FROM TODAY. Yes that soon! I'm writing today because it has taken us a few days to process this information ourselves. I think I can speak for Brian, Lexis and Emeline... we are all reaching out to God for prayers, we want Ava to sail through this repair surgery, come home and heal quickly. We are placing her in God's hands once again.
Here are a few pictures from Thursday. She now weighs 110 pounds and is 5'7 and a half!
It was a strange sight to see all the doctors and nurses in their protective gear. Something I never imagined I'd ever see. Her surgeon looked like he was going to jump in the water and go for a snorkeling adventure. Being in quarantine for so long makes you see the world in a whole new light. I made these masks just for this visit. A visit I have been dreading for quite some time.
So GREAT news... Brian will be able to be with us for her surgery and hospital stay. I was very anxious about being all by myself because of the extra precautions with the corona virus. I cried happy tears when the nurse told me they had now lifted it and both parents were allowed. God answered my prayer! I need Brian. We are Ava's team... "TEAM AVA!"
Ava's mood has lightened since making the decision. That has made it bearable for me. It's so hard as a Mother to know your child is hurting not only inside her abdomen but it's causing her mind to be sad as well. She is afraid of course but we know that God will be with ALL of us. He cares and He knows our struggles.
1 Peter 5:7 Casting all your care upon Him, for He cares for you.
I will leave you with a beautiful video she made to celebrate (CHOP's) Children's Hospital of Philadelphia's 24th annual fetal reunion. (It was held online this year.)
You can truly see Ava's love for life and her zest for happiness as she thanked CHOP for giving her a fighting chance at birth. We will never forget all she's been through there or at the University of Iowa Children's Hospital. We continue to praise God for ALL he's done in Ava's life. We know that this is just another hill to climb. We will celebrate the Victory when it's won!
We would LOVE your prayers for her July 6th Surgery and for her protection from any illness that could be at the hospital! We need her restored and made whole again! The doctor estimates her stay to be about a week. We hope less. We know she is a FIGHTER for SURE!
God Bless you all!
