Day 3

Hello Ava followers. We had another good/hard day today. She remained at 96% oxygen pretty much the whole night. Good just not her normal but still within a good range. I got sleep on and off. I probably got about 5 hours in total. Brian did good watching her. She was up early about 5am. She sat up with our help. Sat in bed a few minutes then wanted to go to the bathroom. I gave her a good wipe down dial "bath" and put on her own gown mother had gotten for her. She felt better getting cleaned up. Surgery team came in as I was finishing her up. They were impressed. It was the doctor she doesn't like Dr. Farber. But she was nice today. Her feet are both a little swollen. Her right foot has been falling asleep. We will talk with anesthesiologists today. Probably how she is laying. She sleeps and switches to both her left and right side. She can do clear liquids today as tolerated. She wanted sweet tea of course! She is sitting up now. It hurts her bad to cough. Over all she's doing fabulous! Make me so happy.

She got up and sat in the chair, then walked to the bathroom. We then went for  walk Her right foot is numb. She still did awesome.  She moved fast. I can't believe how well she's doing.

The surgeon took off her bandage this morning. Yea it's the same length at her previous scar. It looks better than I thought it would. There are steri-strips on i that will eventually fall off.

She got up and sat in the chair, then walked to the bathroom. We then went for a walk. Her right foot is numb. She still did awesome.  She moved fast. 

We went for another walk at around 3 with the physical therapist. They are all just shocked that Ava is getting around like nothing ever happened. 

They are letting her drink clear fluids but she is not drinking much at all. She is very hungry but we have to take one thing at a time. Her bowels have to wake up. They are hearing bowel sounds. 

Dr. Shilyansky said she could do soft diet but somehow words got crossed and the team said to wait until morning possibly. Brian and I have just been eating crackers, nuts and granola bars I had bought to try and carry us over. I don't want to get the Covid 19 virus. We are in one of Iowa's hot spots and this being the biggest hospital in Iowa is kinda scary. It's so weird... We can take off the masks in Ava's room but as soon as someone comes in bam... mask on. It's like second nature now. My thoughts were kinda cloudy today and I decided we needed to take care of ourselves too. I ordered Curbside olive garden and ate it in the parking garage. (If you have been following us you know this is way against my corona rules. NO OUTSIDE FOOD however I felt it was am emergency for us.) We were only gone 45 minutes. When we got back Ava was so discouraged and started crying. I felt bad as we had to eat. Brian was getting headaches. She wants to eat so bad. Liquids have gone fine but she's only drank about 10 ounces and a jello. Her incision started hurting. The nurse put in her toridol. I told Ava if she wants the diladid she has to ask for it. So she did. Then she called Emme at Mazzios. "Emme her sister has the same effect of a drug on Ava. It's so cool how she calms her. So Emme helped us lighten the mood. I read her get well cards. She feels like she should be going home. She doesn't understand she is exceeding her goals. She breathes past the amount the surgeons wanted on her breath test thing!! Pray she gets rest and is able to eat in the morning. She's getting weary and it's only day 3.... she walks all by herself at her normal pace. She's killing it! She is truly a walking miracle. Everyone is in awe of her here. Monday 9 hour surgery and Wednesday sitting in bed, walking the halls and seating in chairs. God is so good!

We appreciate all the love, support and prayers. Ava is feeling down. She hurts and it's just part of this process. She still has her epidural and it is working as she is numb in the incision area. Pray it continues working. This is all so tough. I'm super proud of her. I wish there was a way she could understand that most people don't get better this quickly. 

She is sleeping peacefully right now. God bless friends!

Terri

Day 2

Hello friends. Ava had a lot happen today. Rough morning. She was fighting the nose suction tube down her stomach. She didn't pull it out but was furious with the doctors, nurses and I. Brian stuck on her side. Finally after several hours surgery decided the tube could come out. Praise the Lord! She felt so much happier. Her cathader came out about a half hour later. They also remove the artery line.

We got out of intensive care around 2:30 this afternoon to the surgical floor sometime today.

Ava likes the bigger room. She still has an epidural and got a bolus of medicine around 3:30. She was able to per on her own. She was very adamant about not walking today because of the pain. However she changed her mind after not liking to go in a bed pan. We were all shocked when she walked (with help from nurse) twice to the bathroom. The surgical team is thrilled with how well she is doing.

She wanted to drink so bad but they are waiting for bowel sounds. They finally let her have a few ice chips. She has a really sore throat due to the ventilator tube during surgery.

She then got very hungry but again we have to wait. I can't believe the strides she's made today. So many people are praying for Ava.  She admitted she did not expect it to be so hard. She's so strong.

Ava said her chest felt tight and hard to breathe a few hours ago. She needs to cough stuff up but it hurts so her oxygen is running 96. Still good but not her normal.

A great day. I never imagined she would be doing so well in just one day. Thanks for checking in.

-Terri

Surgery Day

Hello friends.  I'm exhausted so I'm just going to give you bits and pieces.

Ava was super calm this morning.

Here she was heading to the Operating Room.

A very long day. Like I said a super quick version as I'm so tired and Ava is now resting good.

Surgery started at 8:30. Theu made the first incision at 9:30.

Time- 6;32 pm She is still in surgery. Of course Ava always throws something in... when they are done she is going to Intensive care for better observation since she had such a long surgery. They are telling us another hour. Pray... I'm tired. Brian is very positive. So we wait...

Time- 7:21 pm- She's done. She had been in recovery for about 30 minutes. Doctors said a lot of adhesions. Her stomach was up partially through the old patch hole. They put another patch and fixed her diaphragm pulling it together and suturing it secure. The cyst she had a few months ago was still there so he opened that up. The plastic surgeon came in and did not recommend the side wall repair. He felt a patch would be better. They cleaned her up placing her organs where they belong. Two thirds of the surgery was removing scar tissue. We are waiting to go see her. He wants her comfortable. She has an epidural but will give diladid if she needs it. He felt she should feel a lot better. He also cleaned up her  g tube scar from the side wall. She went through a lot.

Time- 8:11- We are in her room. She looks good. She's still pretty out of it. She tries to open her eyes and put her head up but then shuts her eyes. I talked with her a little bit. The PICU doctor came in and started talking. When she was done I started feeling light headed and sat down. I hate that she has to go through this. I'm sitting here crying. Brian is by her bed. I had to take meds to calm down. I just held in so much and it all came spilling out. I'm better now. Thanks for the prayers. She's on oxygen now but doing good. She only needed oxygen for about 30 minutes. She woke slightly to ask for her phone to send out her snapchats. 

Her incision is very large. They went through her 2nd repair surgery. I'm guessing 7-8 inches long this time.

Continue to hold us up in prayer. We appreciate all your thoughts love and prayers. 

-Terri

So her surgery ended up lasting a little under 9 hours.

Reality

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!

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 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!

Corvid-19 Pandemic... She's healthy!

Hello friends and family. I wanted to give you a quick update on Ava. The world is in a mess right now but Ava has been home quarantined and doing fine. Thank goodness for the internet, right?

Her surgery was put on hold until things settled down. This brings us hope but a little bit of anxiousness as well. Her health comes first so if she starts having complications breathing or obstruction she will need to have surgery but if she keeps staying stable we will just keep praying and asking God to hold her tight!

I thought I'd show you a few of her pictures. I did make a few masks. She's been in the house now for 29 days. She's been outside on the porch and the trampoline 2 times. I think she's very afraid of contracting the virus. I've been doing the grocery shopping online and then picking it up. Then the daunting task of sanitizing all of it. We don't go anywhere and I cook all our meals. We can't take any chances. Brian however still has to work since he works for a distribution company. He takes his clothes off puts it in the washer then heads to the shower. He avoids close contact to her but yesterday she had to hug him. She used to hug us both at least once a day. She's such a joy. She doesn't let life get her down.

Yes her hair tips are blue!

Her sisters on Easter Sunday. She's  only seen her sister's twice since the virus started. She facetimes them several times a day so that helps too.

Thanks for checking in on Ava and continue to keep her in your prayers. Stay safe everyone. We are holding you all up in prayer as well. God bless!