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

Big sister showing off for baby sister!

Readjusting

Well Avery has made it almost to the 24 hour mark of her partial closure. Yesterday she was pretty up and down. Her stats were way lower than they had been prior to the closure. It was pretty scary and I was uneasy all day. I actually slept pretty well and feel rested. This morning, the docs decided to raise her meds just a little bit more and she seems to have responded well to that. Now, they will watch her and hope that she can keep her numbers up as they ween back down on medications. Later this week they may close the remainder of her chest and we are back to readjusting again. It is such a long slow process.

We are supposed to meet with a bunch of doctors sometime this week to discuss Avery's big picture. Although it is easier to break up her two conditions, it is sometimes helpful to get an idea of where she is as a whole. I will let you all know what we find out.

As for me, I walked/ran for the first time yesterday and it felt SOOOOO good. I am not as sore as I thought I would be so I guess I better step it up a notch! I miss Kaitlyn desperately. It is so hard to be away from her. Actually I hate it!!! My mom is leaving today so that is going to be really hard for me to get used too. She has been such a fabulous help and support and I will miss her dearly. Hopefully she will be able to come back again.

Anyways, thanks for all your comments. They keep us going!

Carissa

Big Step

Avery had a calm night. No major issues. When I called this morning to check on her, the nurse told me that the heart surgeons were planning on doing a chest clean out sometime today. Basically the surgeons go in a clean up her open chest and put a new dressing on. Well, one of the doctors called me a little after 12pm and told me that they had done the chest clean out and also partially closed her chest. Yikes! The chest is not completely closed yet, but this is a very big step for Miss Avery. The team is watching her closely to see how her body responds to the closure. I am very nervous and anxious. Each time there is any small adjustment to Avery's care we all grit our teeth and brace for some setbacks. So far, she is ok, but has potential to get worse at any moment. As of right now, her stats have gone down since the partial closure. Shane and I are both on pins and needles. Right now Avery is on some meds to keep her blood pressure up and everyone is hoping her other numbers go back up. Each time adjustments are made to her care, there are concerns about how her body will respond. She is so sensitive to changes. We are going to be close by her side for the next 24 hours to keep a loving eye on our precious girl.

Carissa

Reality Check

No matter how hard we think Avery is fighting, it is hard to get past how sick she really is. We try and think about the road ahead and what effect it will have on our family. Will she ever be able to keep up with Kaitlyn? Will she always be weak and sick? Will she ever be able to have her own children? Will she ever even make it that far?! And then we step back and try and realize how many obstacles she has faced and pushed through. It is Sunday morning and we just had a long discussion with Dr. Ebel about her slow progress. We had a set back last night with a drop in blood pressure, so she back on norepinephrine and her pace maker. The short thoughts are that no one is quite sure what the next step is and how Avery will react from minute to minute. The long story is her heart and lungs still have to work in unison. Right now her mitral valve is leaking and mixing red and blue blood together. This not good because we have to close her chest to get her off of her ventilator, so she can breathe on her own, so she can grow and have her second heart surgery, to fix her mitral valve... its just so much! The doctor also commented on her brain activity. He said that most babies that are this complex would not have been given the same chances as little fighting Avery because there is just no reason to try, just make them comfortable until they pass. The only thing they can monitor is how much blood and oxygen will get to the brain. The weeks of sedation and medication along with the early development of playing with toys, feeding, and parental interaction that she has missed is very tough to tell the outcome. But she could always catch up. All in all Avery Mae has defied the odds, led the way, and stumped their minds. She will need alot of physical therapy and practice feeding...which we are patiently waiting to give her.-Shane

Kinda Home

I am sitting in my living room...in Fayetteville...and it is very weird. It has been a month since I have been in this house. I figured that with Avery kinda just resting and gaining strength, it would be safe for me to make a quick trip to NWA. I needed to get some different clothes, check on the house and dog, pay bills etc. I will be honest with you, in some ways, it is very sad for me to not be walking through the door with my newborn, but in other ways, this house is exactly the way we left it...with no baby. It's almost like she doesn't exist. It's like I was pregnant for nine months, went to Little Rock, and came back to the way things were before I was ever pregnant. That sounds really bad but it is the truth for me.

Just called to check on our lovely Avery Mae and she is still doing fine. The surgeon was in to check on her belly and it is still healing well. The heart surgeon was in yesterday and he is hoping to close her chest early next week. He still wants some of the swelling in her chest and belly to go down before he attempts to close the sternum. Again, we do things on Avery's time. Meds are still being weened and she is still highly sedated.

Next week will be a big adjustment for me. I will be leaving Kaitlyn in Fayetteville with one of my best friends in the whole world, my mom is leaving on Tuesday, and Shane will be returning to work. We are desperately trying to figure out how we are all going to handle our family being split up and how we are going to remain close to ACH in the long run. It's messy.

It's nice to have some familiarity...if only for a moment...my bed, my couch, my dog, my yard...all the things that make us feel at home. The plan is to be back in LR tomorrow...pray Avery's swelling goes down so we can get her chest closed and hold our girl.

Carissa

One Month

Sorry...didn't mean to freak you all out. Avery is fine. The closure of her belly went fine. I did not get a chance to post after we left the hospital and we were out doing stuff all day yesterday, so I am just now getting caught up.

The closure took about 45 min. and the surgeons were able to get all the intestine back in her belly. However, they were not able to close the skin completely because her skin is so tightly stretched right now. It may close some on its own but most likely she will need some kind of skin graft later. It's not bad and definitely not high on my list of concerns.

Avery has been with us for a month now and it is so hard to believe! She continues to be stable and respond well to the weening of her blood pressure meds. The heart surgeon was in yesterday and is still not ready to close her chest. She had a fever yesterday so blood was sent off to check for infection. Her pupils were a bit large so they did a head ultrasound this morning to check for bleeds...didn't see any so that's good. Hope to hear back about the possible infection later today...she has not had a fever recently so hopefully we are clear. Our biggest issue right now is keeping her sedated. She seems to be very uncomfortable and in pain and I will tell you, it is the most excruciating thing to watch. I find myself avoiding a hospital visit unless she is totally asleep. It's just too hard to watch. My heart hurts...I just want to hold and comfort her like mommy and daddy should do.

Be thinking of us as we are closing in on the time when our family will be separated. I have been dreading this time. Shane is going to have to get back to work soon and Kaitlyn will be going to Colorado with my mom next week. I will be holding down the fort here in Little Rock so all of you who have offered to come visit should prepare for my calls! It is going to be extremely hard for Shane to leave and be away so please please keep him in your thoughts. The next couple weeks are going t be very difficult on all of us.

Thanks for your continued support of our family and Avery. Words just don't express our gratitude- Carissa

Time to Close the Belly

Well, it was at 1pm, then at 3pm, then 3:30pm, and now at 4:44pm, I think the surgeons are getting closer to getting ready to start. From what the surgeons have told me, this "surgery" is fairly straight forward, but as parents, we freak out any time surgeons are involved with our newborn. Hopefully, they will do what is planned without any complications. I am told it will take about an hour, but as you can tell from the first sentence, things don't always turn out as expected. We don't rush surgeons! We love them!

I'll post again when everything is done-Carissa

Tommorow's Plan

It has been a pretty quiet weekend for Miss Avery. She continues to rest and gain strength. She has tolerated the removal of the spacers near her heart and also tolerated the weening of the blood pressure meds. On Monday, Dr. Dassinger (doc who performed her hernia repair) is planning on closing the incision in her belly that has been allowing for her belly to heal. I am guessing that after that happens, we will have another couple days were the team lets her rest. We never know how Avery is going to respond to the slight changes that are made.

If all goes well, I am thinking that I may try to make a quick trip to Fayetteville to do a couple of things. I will probably stay one night up there and then return to Little Rock. I have an appointment with my OB next week so that he can check on how I am healing. I am feeling pretty good...a little better each day. I am hoping he will say I can start exercising!!!

At this point, I have mixed feelings about everything. It is hard to explain. I am so thankful that Avery has overcome all that she has, but there is some serious fear about what is to come. In the back of my head, I know that at any moment she could be again fighting for her life. There is never really room to truly relax and go "ok, we are going to bring her home". I am so scared to get my hopes up. I don't want to be disappointed, but at the same time, I want to celebrate and cherish the good days. It's the most awkward emotional place to be.

We continue to be blessed with fabulous people around us and we are grateful for all the love and compassion. The road ahead of us is going to be full of ups and downs and we are preparing ourselves for the unknown. I posted this quote from another friend's blog and I still feel a deep connection to these words:

“Concretely, abandonment to the will of God consists of finding HIS
purpose for you in all the people, events, and circumstances you
encounter. If God tears up your beautiful game plan and leads you
into a valley instead of onto a mountaintop, it is because He wants
you to discover HIS plan, which is more beautiful than anything you
or I could have dreamed up. The response of trust is “Thank you,
Jesus,” even if it is said through clenched teeth.”

Love to all-Carissa

Postal Nightmare!!

The very first week we were here, we tried to forward our mail via computer and not go to the post office due to all the craziness. That being said we have not recieved anything since May 19th. The USPS website has only some of the address and all mail was returned to sender. So for those of you who have sent letters, cards, or bills(haha) we apologize. You may resend to 501 Emerald Street Lowell,AR 72745which is our real address or THE FIELDS CENTRE (Attn. Keirsey Family) 4000 WOODLAWN LITTLE ROCK,AR 72205. Hope nothing was lost and thanks for the thought anyway!

Patience is a Virtue??

Well lots of little things going on with Avery Mae but nothing as far as the big picture is concerned. She is still on lots of medications at high doses and is still very fragile and considered critical. Her heart is still going strong and her oxygen is at 40% now. They also have taken out a chest tube and removed some arterial lines. Today they made braces for her wrists and ankles so she does not develop shortened tendons. She is still on general antibiotics because of high risk of infection with all of the open wounds. The heart doctor will possibly take out the chest separator today if all is ok. This is all a long process that means things can improve or get worse. Right now one step forward to us means nothing happens...which is positive in our world! We are still not out of the woods and appreciate all the thoughts and prayers!-Shane

Leave Me Alone!

...that's pretty much what Avery is telling us right now. Shane and I went to say goodnight to little muffin last night and in the process of talking to her and touching her, her blood pressure dropped and her vitals were unstable. She is on a lot of sedatives right now because she simply won't stay still. It seems that even just slight stimulation makes her upset. So that being said, we are leaving her alone to rest today. It is practically impossible to go into her room and NOT touch her so I am kinda staying out of the hospital today.

When she is left alone, she is stable and continuing to heal. It is my understanding that she is still getting a lot of medication to support her right now. Hopefully as she continues to recover, she will be able to keep her vitals up on her own. She is still on what the docs refer to as "maximum medical support" so hopefully we can reduce that support slowly over the next days and weeks.

Thanks for all the love you are sending- Carissa for all

24 Hours...and breathe!!!

Wow, what a couple of days! We are now just about at the 24 hour mark without ecmo. We are so proud of our little angel warrior. Dr. Moss said a few minutes ago that Avery is holding her own and the goal today was to "Let her be". She is peeing ok and her blood pressure is borderline. The blood flow to her head is a little on the low side but nothing to get excited about. They are also trying creative ways to get her co2 levels down. Her oxygen levels are actually good enough to ween off of the ventilator a bit. All in all she is kicking a little butt considering she just had open heart surgery 5 days ago! We love her very much and still believe in miracles. Thanks everyone for the extra prayers because God is good...and he is listening!-Shane,Carissa,Kaitlyn and Baby Ave!!

19 Hours and Counting

Hey all. Avery has been off ECMO for 19 hours and is still stable. She has had a couple dips in numbers but is holding her own. I know very little details as I have been totally out of it for the past couple days. I have not spoken to the doctors this morning so I will try to get a better idea of the details soon. Just wanted to let you know that she seems to be doing ok at the moment. Again, things change in an instant, but we are thankful for the time we have.

Carissa

Goodbye ECMO

I just got a text from Shane and Avery did well for one hour during her trial off of ECMO, so they are removing the cannulas right now.

SHE IS COMING OFF!!!!

God is good. Please, keep the prayers coming...that Avery remains stable without the help of ECMO.

Prayers Needed!!!!!

The trial off of ECMO is ready to begin...

I spoke with Shane and he said that if Avery is able to make it off of ECMO today for an extended period of time, then they will keep on fighting right along side of her. However, if she is unable to come off for more than an hour, then they will know that her heart and lungs are unable to sustain life without the help of ECMO and if that's the case, they will most likely remove her from life support.

Needless to say, today is a VERY big day!! Shane said, "We need all the prayers we can get." So please, wherever you are...whatever you're doing...please, stop and say a prayer for Avery. We know that God can perform miracles and He is holding Avery in the palm of his hand.

I will let you all know as soon as I hear anything.

Birthday Girl

I just heard from Shane and Carissa a while ago...

There is not a whole lot to report today. Avery is doing well and the plan for the day is to try to get her off of EMCO. Shane said he would let me know how it goes and as soon as I hear anything I will update.

Today is Avery's 3 week birthday!! Praise God for 21 amazing days with this beautiful, little life-changer! The Keirsey Family is having a birthday party for Avery today and I know that will be fun!

I will let you know how the day goes.

Monday Evening Update

I heard from Shane a little while ago...

They did find a clot during Avery's CT scan. At first, they didn't see anything, but when they took a second look they saw the clot. Shane said they have been told that it could be bad and it could be nothing. It seems that right now it's not their main concern. They are continuing to wean Avery off of ECMO for the second time. I'm guessing that other issues will be addressed after that.

Shane said he and Carissa are worn out! I know this journey that they're on is beyond exhausting. So tonight, please pray for a restful night for the two of them and for Avery to continue to take baby steps in the right direction. But, most of all, please pray for God's grace to surround the Keirsey family as they continue down this uncertain path.

Afternoon Prayers

I just got a text from Shane and he wanted me to update the blog with a new concern.

A head ultra-sound performed on Avery this morning raised some alarm with the doctors. They are seeing what may be a brain bleed or a clot in her brain, so Avery is going to have a CT scan this afternoon.

I just spoke with Carissa and she said it will take a couple of hours since there is so much medical equipment that must follow Avery wherever she goes, but they should have some news before the day is over.

I know they appreciate your love and prayers so much.