Good night's and Thank you's!

Long and tiring day. Friends and family have reached out and shown up on our door step to support us! Just checked in on baby Ave and all is the same. She is still pretty pale and paralyzed from the surgery(no moving around little one) and they are backing off some meds. Now we wait as she heals,heals and heals! The game plan is to get her rested so we can try to ween off (the monster) Ecmo again. But I guess it has allowed us to see her all of this time. We are excited for tuesday to get here because at 10:30 she will be 3 weeks old!! Kaitlyn will love to give her a mini birthday cake...and I will buy the hats! Good night and God bless-Shane

Early morning

My phone rang in the family room at 6:30am after a few hours of sleep. The last time I touched Avery was at about 2:30am. It was Dr. Garcia again(she has been around Ave since 8:00am yesterday!) She said that Avery was administered lots of blood/clotting products all night long, but whatever they put in she would pretty much lose to blood loss. Dr. Jaquis and team were brought back in and at about 7:30 he opened her chest. They said that if it was uncontrollable bleeding, they would take her off life support. But it was actually a tear where the cannula was inserted into her heart. They stitched it up and Dr. Jaquis said to let Avery rest and we will take it a couple of hours at a time. We called in our wonderful social worker named Hillary who helped us find our lodging to sort through things and help with Kaitlyn if we have to face the inevitable. We also prayed with the Chaplin in our family room. Now we wait again on this roller coaster of emotions. I will continue to try and post all day as long as I can think straight.-Shane

Long night...

We were not at home long and received an emergency call from Dr. Garcia. She said that Avery was really sick and to come as fast as possible. When we arrived DR. Jaquis and the team were putting Avery back on Ecmo. We were dazed and confused. Dr. Garcia brought us into a room and said they could not help her blood pressure and had administered every type of drug to help her vitals...but her poor little body had taken too much of a beating from the heart surgery. We had to make a decision about Ecmo and how many more days of drugs we would pump into her. We cried and told ourselves that she had suffered enough and to let God lead us to the next step. Since they had already started the cannula's into the heart they proceeded and we discussed everything and called friends and family. Kaitlyn was fast asleep and a good friend was with her at the house.The thought of telling her about Avery broke our heart. The next half hour felt like days and many emotions ran through us.The team finished the Ecmo circuit and we spoke with Dr. Jaquis as they cleaned Avery up. His plan was to let Avery rest on Ecmo and hopefully she would not have a stroke or any brain bleeds. He repeated what he told us back in February, before we would really know how painful this all would be, that he never wanted to do something TO our child, but rather FOR our child. And now I wait in the family room after sending Carissa and the grandmas home to rest. This next 24 to 48 hours will lay out His plan for our precious little girl, the sweet name that everyone knows on this floor, Avery Mae Keirsey. Please pray for her to be at peace, no matter what the outcome.-Shane

Done With Surgery

Avery is out of surgery and back in her room. She was in surgery for about 5 hours. We got updates every hour from one of the surgical assistants, but we have not spoken directly with Dr. Jaquiss yet. He should be in shortly.

Avery is off of ECMO and appears to be doing ok for now. They will be watching her very closely for the next couple of days. We are exhausted and ready to get back to the house and relax a little. Thanks so much for all your prayers.

Carissa

Needing BIG Prayers Today

We have had a lot of things going on so far today. We trialed off of ECMO today at 9am. Avery did very well and was off for almost an hour. There were about five doctors in the room assessing her during her trial off. Dr. Jaquiss, the lead heart surgeon, thinks that she is capable of coming off ECMO but does not think she will survive long without some surgical intervention. So long story short, she will have surgery to open up blood flow in her heart. She is already in the OR and surgery will probably begin around 1:15pm. It could take 3-5 hours to complete and I will try to update as the afternoon progresses.

This is a very scary time for all of us. It is unclear exactly how she will respond to this surgery, but Dr. Jaquiss believes that this is the best option at this point. He is pleased with how well the hernia surgery went and is optimistic that this heart surgery will give her a chance at survival. Still so much unknown...keep all the thoughts and prayers coming. Avery has achieved some major milestones so far and we are hoping that trend will continue.

Love to all- Carissa

Doing Better

As of this morning, Avery is better. Her belly is softer and not bleeding as much. She is still peeing good which suggests her kidney function is good. The plan as of today is to start to ween her ECMO and do a trial off tomorrow sometime. When we left this morning she was responding well to a breathing treatment that will hopefully help her lungs expand. The team caring for Avery continues to stay positive and focused on getting our little girl stronger.

All of this is so hour to hour and day to day. Everything changes in an instant and we are all riding the waves.

Carissa

Trying to Stay Calm

Well we had an eventful start to the day. I have been told over and over to expect setbacks and I knew that they were coming, but it doesn't make things any easier. Yesterday was tough with the trial off ECMO not really going very well and now today with this bleeding issue...we are worn out. All of the issues that Avery has going on are just so complicated and they all work against each other to some extent. If one thing goes wrong, there are so many other factors that become more challenging. It's all just so scary.

As a parent, I feel so helpless. There is nothing I can do and nothing I can say...all we can do is touch her hands and tell her we love her but somehow that just doesn't feel like enough.

For now she is doing ok I guess. Shane and I will meet with the attending this afternoon to discuss the next couple days. I will let all of you know how that goes.

Carissa