Looking Better

I just had a chance to visit with Ave for a few minutes. She is looking much better today. Over the past couple days, she had not been peeing very good and she was VERY swollen. Probably the worst I have ever seen. She is now peeing much better and has lost a lot of the fluid. She is up to 5ml/hour on her feeds and almost off of all sedation meds. She is still on morphine and versed for pain. Her vent weens are up and down, but she is slowly breathing more on her own. Overall, she seems to be doing pretty good. I have not talked to any doctors since last week so I am hoping to catch one today.

We spent Thursday through Saturday in Fayetteville. Shane's last day of work was on Thursday and that was emotional for him. We spent Friday and Saturday catching up on stuff around the house. Starting to think about getting it ready to sell/rent. That should be interesting. Kaitlyn is in VBS this week in the mornings so I have some time by myself. Shane started work with his mother this morning...at 5am. He is such an awesome guy...I am so proud of him...but I miss him. We have been together for almost two months straight.

I am hanging in there for the most part. I have to be honest, I am tired of being here. We have been here almost seven weeks and I want to go back to normal...but we now have a new normal. I know this is just a moment in time, but it is really hard. I am coping as best I can, but there are days when I am totally out of energy. I am taking each day at a time and hoping that things continue to go as smooth as possible. I really don't want to complain...I am grateful for all that we have and the unimaginable support.

Thank you for continuing to watch little Avery grow and gain strength!

Carissa

A New Life!

I started with my company in 2002 with hopes to catch up on a few bills and start chipping away at my debt. I realized quickly that it was a good fit and I was able to "be myself" finally. After Carissa and I found out that she was pregnant with our first child, Kaitlyn, I took things a little more seriously. I worked hard and after we were married and Kaitlyn was born, I was transferred and promoted and we started our long life together with baby in tow. It was a long road but I "moved up the ladder" and made many friends within the company. In the seven years with Tradehome Shoes I was able to pay off more than $25,000 in debt and looked forward to finally be promoted to the Home Office level. I would be able to travel to different states, work with different people and customers everyday, and have more weekends off with the girls. Then the devastating news of Avery Mae hit us without warning and my focus and priorities changed. I would really have to make some sacrifices and life changes.I unfortunately had to step down from my position as District Manager in February and last week gave my notice to the company that has taken care of us for all these years. I have been in my Fayetteville store for five years to the month and will miss the familiar faces of customers and merchants I have grown to love. It was surreal to turn off the lights and walk out for the last time last night at 11:00. My supervisor and I had a long talk yesterday and everyone there supports my decision and is trying to understand the painful road this has been. We talked about God's will and how it is hard to understand His purpose for me at this moment. I will go to work for my mothers construction company so I can have flexible hours to help when we FINALLY bring our sweet baby home to her nursery. We will try and sell our house this summer so we can move closer to Children's for little Avery. This post is very healing for me and I am usually not a writer, nor a reader!(I just watch many action movies) I want those of you who know me personally or have shared the sales floor with me to know that it was a very difficult decision to leave and it is scary and exciting all at the same time to start this new life! Thanks for sharing- Shane

Hurts My Heart

The past few days have been up and down for Avery. For the most part, she is still stable...just trying to get used to the little changes. She is back on the pacemaker because her heart rate dropped some. She is doing better now. She is still not peeing as much as the docs would like, but some of that is to be expected because they removed the medication to help her pee. Her little kidneys just need to get used to working on their own. She is really swollen and doesn't quite look herself. Hopefully she can get rid of some of the fluid soon. Her ventilator setting was increased some because she was not getting rid of CO2 as much as she should. Her meds for sedation have also been weened so that is good. She is able to move around a little more. She is now getting 2ml an hour of formula. She still seems to be tolerating that well. The nurse said she pooped twice today. We are really in that stage of one step forward and two steps back.

All of this is just so hard to watch. We just want to take it all away. We love her so much. I am feeling tired today and a little defeated.

Carissa

Not Much, But Lots

The past couple of days have been pretty uneventful...well at least in comparison to the past few weeks. Today, Avery is six weeks old and I just can't believe how fast the time has gone. She has been through more in the past six weeks than I could ever imagine. She just continues to push through challenges. All things considered, she has responded very well to the closure. Over the weekend, she pretty much just rested. After the chest closure, she remained paralyzed for 24 hours and then has slowly begun to move around more. Yesterday she looked at me...and I mean really looked at me...not just through me. It was pretty special.

So as of now, the docs are weaning meds and the ventilator SLOWLY. This process could take weeks. She also received her first feed via a tube directly into her intestines. Her belly swelled some so they have stopped the feeds for now. Not a huge surprise considering she has never had any kind of food in her digestive system. The good news is that as a result of the feeds, she pooped! That is a good sign that her system is ready to work. Overall, she is progressing and making baby steps. It is a draining process for both Shane and I and we find ourselves exhausted after doing nothing all day. How does that work?

We continue to be blessed by friends and strangers throughout this process and are forever grateful for the constant giving. Speaking of blessings, some dear friends of ours are going to be on The Today Show on Wed. morning at 8am. Tune in to be blessed by Eliot Mooney!!!

THANK YOU TO ALL WHO HAVE FOLLOWED OUR STORY!!!!

Carissa

X's and O's

My Chest is Closed!

Avery's chest was closed about 2pm yesterday. I did not have a chance to post after the surgery. Yesterday, she got some blood and went up a little bit on her blood pressure meds. Other than that, she has not needed much extra support! The plan is to keep things the way they are for now and see how she does when she is able to move around a little.

Kaitlyn is here and we are planning on trying hard to keep her occupied. It is very hot so I think we will be spending most of our time indoors today. Hope you all are well.

Carissa

Moving

Avery moved rooms today. The move didn't have anything to do with her, they just needed her room for a new baby coming in to the CVICU. Shane and I watched as they got all the wires unplugged and organized. It's hard to believe that moving a five pound baby could be so much work and required 5 nurses! She tolerated it well though so we left to let her rest. We are staying close to the hospital today. The surgeons are supposed to close her chest at some point. I guess there was an emergency surgery so we'll see if they get to her. It may be tomorrow. As I have said before, we don't rush surgeons!

In other news, Kaitlyn will be coming back to Little Rock on Friday. She has had a fever and has not quite been herself, but hopefully she will continue to get better. She has been happily occupied by our friends in Fayetteville, but is always eager to come back to us. Not much else going on...just staying close to Avery to cheer her on. If she responds well to the chest closure and the heart team can keep her stable for a couple days, she may be moved to the NICU. We shall see...

I'll let you know when we hear any more news about surgery.

Carissa