A Little More Normal

I guess my overall thougt about this week was that I had a somewhat more normal schedule. Shane was back at work, Kaitlyn was up early ready to go, and I think I actually went to Walmart this week. It was more similar to my routine. I got a lot done and was also able to spend some time with friends.

In the same way that I was freaking out about having too much to do, I am a little anxious about what will happen when I have nothing to do. I do not sit still very well and I tend to get bored quickly. It is more my style to have a full day so that being said, I'm not sure where that leaves me. We are still in the middle of trying to figure out where we are going to live and until that is more clear, I am not sure how I am going to fill my time. I am hesitant to jump right into work in the counseling field because I think I need some time to work through all that has happened. I have been thinking about looking for some part-time work but I'm just not sure. Kaitlyn will start school in a couple of weeks and that will leave me with empty days. I am trying to be patient and just see where things go, but that too is very difficult for me.

Shane and I will keep pushing forward and trust that in time our lives will settle. There is no book on how to handle these situations in life. We are to some extent flying blind...just hoping that we are moving in the right direction.



Worn Out

We have spent the last two days moving all the stuff out of our house and into storage. Moving is rough. We are exhausted but almost done. It was very difficult for me to come back to this house without Avery. I have been back a couple of times over the past few months but this is the first time I have been home since her death. YUCK. For us, moving is always emotional. Shane is more sentimental than me, but even for me going through all of Kaitlyn's old stuff was hard. Especially considering we were hoping to use all her stuff for Ave. There is no doubt that we have crammed pretty much every life change possible into three months. It's not how I would have planned it, but it is what it is.

We head back to Little Rock tomorrow. Next week should be interesting. My mom leaves Monday and Shane goes back to work. I have a few weeks before Kaitlyn starts school so my plan is to play with her and continue to heal. I feel pretty displaced at the moment. I don't feel right in Fayetteville or Little Rock. It's very weird.

I did end up at the hospital for a little bit on Thursday. It was ok...better than I thought it was going to be. I know that certain days might be easier than others. I talked to a couple of Avery's nurses and gave a quick wave to Dr. Eble...they are all such great people. I peeked into the waiting room and quite honestly was thankful that I wouldn't have to set another foot in there. I walked by her old room and honestly, I was at peace. Not for a moment did I wish her back there. I miss her, but I do not miss her in the CVICU. I remember driving every morning to the hospital, walking in, and panicking about having to see her. It is so comforting to know that she is better off now. I may be in pain, but she is free. Isn't that what it's all about? We sacrifice for them. I didn't give up on her, I let her go. Anyways, some days are good and some are bad. I allow myself both. Today was pretty good and I'll take it.




It has been a little over a week since Avery died and I am beginning to work through the reality of our situation. Over the past few months there has been nothing but "in the moment". Those of you who know me well, know that I am a planner. Well that whole planner thing went right out the window after Avery was born. The bottom line is that it is simply not possible to plan anything when you have a sick baby. Things change minute by minute. So, I readjusted and tried to do what felt right at the time. That being said, we are now left to sift through the decisions that were made "in the moment".

As many of you know, during the time that Avery was sick, Shane changed jobs so that we could be closer to Avery and keep up with her care. Now trust me, there were other reasons why he quit. We knew it was possible that Avery would never come home and that we would still move from Fayetteville. "In the moment" I did not care how crazy it sounded to change jobs and move. Shane and I simply wanted to be close to our baby. Well the aftermath of all of this is that we have a house on the market in Fayetteville, a job in Little Rock, and basically no place to call home. We were so blessed to have Pulaski Heights Baptist Church offer their house for us to stay in, but we are coming up on our time to move on. The church and its members have been so kind and unbelievably giving and we are so thankful for their loving spirits. Anyways, Kaitlyn will be starting kindergarten in a few weeks and I am freaking out a little bit about how all of this is going to work out. I desperately want to be "home" and have some sense of comfort in my everyday life.

So after all this blabbing, basically I am in need of prayers. Please pray that this situation will work itself out. Pray our house will sell quickly...pray we can get somewhat settled before Kaitlyn starts school...pray that we as a family can remain glued together. I am scared, and I feel like I have very little control over things right now.



Moving Forward

Over the past few days I have been slowly chipping away at my list of things to do. Shane keeps telling me that I can't get everything done in one day...he knows me so well.

The mornings are the hardest right now. When we wake up, we are both immediately hit with the realization that all of this was not a dream. Avery is gone. No late night phone calls from the hospital, no calls to the hospital to see how her stats are, and no talks about what it will be like to bring her home. For nine weeks straight I went to the hospital...walked through the maze to the CVICU...stood by her bed and held her hand. I have not done any of those things since last Tuesday. In the same way I had to adjust to hospital life, I now have to adjust to life without the hospital. It is so strange. It is most definitely NOT normal to spend day and night consumed by a newborn in the hospital, but for us, for those nine weeks, it was normal. I am now left to contemplate what my life will be like from this day forward. We fight daily to focus on the positive. It is easy to get caught up in the things that are no longer...the phone calls to check on us, family members in town, and attention in general. In a way, we got used to the mad rush of attention and now that it is not as intense, we miss it. It is time to move on.

Yesterday, I went to the social security office because some how or another, Avery's social security card paperwork never got filed. I was trying so hard to keep it together as I talked to the lady helping me. She told me we would have to just start over. I would need to bring Avery's birth certificate and some form of ID. She said, "you can bring her shot records...you've done her 2 month shots right?" I burst into tears and told her that my daughter had passed away. She of course was horrified. It is those kind of occurrences that I do not look forward too. It's nobody's fault and I wasn't mad, I just wish things were different. I have some business at the hospital to take care of tomorrow. Like I mentioned above, I have not been back there so I anticipate it will be difficult. We also plan to visit Avery's grave today or tomorrow. That too will also be challenging. Please continue to pray for peace and healing as we embark on a long list of "firsts". Thank you for all your kind words, your heart felt cards, and your cyber hugs. We cherish all the memories and hold so tightly to you precious friends.




It has been an absolutely crazy past few days. Last weekend Shane and Kaitlyn went up to Fayetteville to check on some things. I frantically called him back to Little Rock on Saturday night after I got a feeling that Avery was taking a turn for the worse. Since then, we have been going nonstop. Today is the first day that I have been able to have some quiet. Not sure if quiet is good or bad. I slept until noon, went through some paperwork, and sat outside with my brother.

Ever since we entered this adventure with Ave, the days fly. Even as I sit here now, I can't believe that it is 4pm. I am guessing there will be a time when there won't be as much to do and that those will be the hardest days. Eventually the medical bills will be organized, the endless list of phone calls will be completed, the thank you cards will be sent, and the house will be sold. Avery will still be gone and we will be left to wonder what life would have been like if she had had a different prognosis.

I personally am doing ok. I have no regrets. We did all we could for our sweet girl. Honestly, if medicine were not as advanced as it is, Avery would not have made it through the first day. We pushed our limits and gave her every chance possible. She died peacefully in my arms and I could not ask for a better way. It was not a shock and it was not rushed. It was beautiful in a way. This may be hard to understand, but in a way I never really had her in a normal way. I never held her, heard her cry, nursed her, changed her diaper, or took her for walks. She was always a bit distant. I loved her of course and spent every moment possible holding her hands and feet, kissing her nose, and lathering her up with lotion. I know she knew I was there and I know she knew we loved her. That for me is all that matters.

I look forward to the days when my smiles and laughter won't be so forced. It will take time I know, but for now I am grateful for the many tender moments Shane and I shared with Ave. I don't want to forget them or push them aside. I want to look at her pictures and smell her blankets. She is forever connected to both Shane and me in a unique way.

I hope you will continue to follow our story. You will have to forgive me, but I will likely use this blog in conjunction with counseling as my own personal therapy and processing. Although I realize that this makes me very vulnerable, I am comforted by the opportunity for release.


Beautiful Goodbye...or See you later ^Avery Mae^

Cannot write much this morning. I will just say that alot of love, and sadness, was at Pulaski Heights Baptist Church yesterday. We sang, cried, hurt, and celebrated Avery's short life as a family. Keirsey's, Stewart's, Given's, Mcree's and Ray's were brought together after many years of being apart. I was honored and proud to carry my sweet girls casket out of the church and then to her final resting place. I don't know if those of you who were in our presence noticed, but many dragonflies flew around the childrens headstones when we first arrived. It was almost like a welcome of Angels from God, or maybe even the children themselves. We released turqouise and white balloons ,to signify CDH and peace, and watched them rise up to the Heavens as ^Avery Mae^ did. As a qoute from a movie once said " It was my worst, and my best day". God Bless and thanks for sharing, Shane.



Some have made comments about my post script about Shane's jeep. It was not my intention to be offensive or insensative in any way or to take away from our agony over the death of our precious daughter. I simply meant to convey that it makes me happy to see my husband smile...if only for a moment. Please don't question our grief and devastation.



Time to Celebrate!!!

Hey all. We had a long day today. It was rough, but Shane and I held hands and walked through it all together. We've cried, laughed, and shared with friends and family our most precious memories of Ave.

We wanted to extend a heartfelt invitation to ANYONE who would like to attend Avery's memorial service. It would be an honor for us to have each and every one of you celebrate her life with us. Feel free to wear whatever attire you are comfortable in. She would want us to have a joyous day! I will leave all the information about the service at the end of this post. Please join us, and we will continue to take refuge in all your prayers and comments. They truly carry us!!!

We will start visitation at 2pm (no open casket) and the service will begin at 3pm.

Pulaski Heights Baptist Church
2200 Kavanaugh
Little Rock, AR 72205

Lastly, many of you have asked what we need. There is no short answer for that but if you want, you can make donations to the Avery Mae Fund (button is on the right top of the blog). We plan to make a donation to Arkansas Children's Hospital (ACH) in Avery's name. Or, in lieu of flowers, please make a donation to ACH in Avery's name.

Love to all- Carissa. Sorry, the date of memorial service is this Saturday: July 18,2009.

Fly, Avery, Fly

We find such comfort in all your comments, prayers, and words of encouragement. Right now we are sitting in the coffee shop down the street trying to take things slowly. There is no rush. We have friends and family flooding to our rescue and for that we are grateful. I will continue to pass along information as it comes. We love you all from the bottom of our hearts!

We love our girl and are so proud of all she accomplished. She will forever be our Avery Mae and we look forward to celebrating her nine weeks of life!



Tuesday Afternoon Update

Hi, all. This is Bethany again. I have been asked by Shane and Carissa to update their blog, and while I love them so much and wouldn't have it any other way, this is one of the hardest things I have ever had to do...

It's with a broken heart and tear filled eyes that I let you know that the Keirsey family has decided to remove Avery from life support tonight and let her go peacefully to be with her Heavenly Father. They feel that Avery has been through enough and that anything else they do to save her would not be fair. She has been through so much and they just couldn't stand to see her keep going through surgery after surgery with no avail.

I, myself, am the mom of a CDH baby who passed away. I have kept up with countless CDH babies over the past two years and I will tell you in all honesty, I have never ever seen a baby put up a fight like Avery has.

While Shane, Carissa, Kaitlyn and their families are devastated, they are finding peace in knowing that Avery will soon be at peace. No more pain. No more wires. No more tubes. No more swelling. Just perfection.

The plan for tonight is to have pictures made, then bathe Avery and hold her while she is still alive. They don't have a timeline, but do know that it will happen sometime tonight.

I know you all, who love Avery (and her family), are devastated, as well. Tonight I ask you to pray for Shane, Carissa and Kaitlyn. For peace, above all else, that only God can give and for some beautiful moments with Avery.

She has been such a fighter...such a sweet, precious little fighter and I know that Heaven will be all the more beautiful with Avery in it.

Cried out and confused...

We went to house last night to clean and stay busy while Avery was in lab. They called and said they had found no blockage, just a narrowing. If I understand correctly, the heart surgery repair opened the flow too much and alot of blood is mixing and going to lungs. We showered and took separate cars back to hospital to have alone time. I drove around first and cried, yelled, and screamed!! I am so tired, mad and distraught. Carissa has been crying and depressed going on three days. We are tired of the wires. Tired of the experiments. Exhausted from watching Avery suffer. My role as a husband and father is to shelter my family. We just want to hold her and take off the tape and bathe her. Carissa arrived at the hospital first and was talking to Dr. Garcia. I joined them. The Dr. said they would discuss maybe going back in through her chest and putting some sort of restrictive piece on her aortic valve to slow the blood but it might make it mix more and she could die from infections, bleeding and everything else. Not an option we willing to try!! We cried by her bedside and held her hands. I wanted to feel her grasp and watch her eyes move under her eye lids so we asked them to take off paralytic. I played some songs for her through my headphones and we sat with her until a good friend of who is a respiratory therapist stopped by to check on me. We left around midnight after Carissa talked me into sleeping at the house and not the hospital. It stormed all night and I don't think we slept much. We came back this morning and talked to Dr. Budda. I honestly stand there sometimes and hear the explanations, but it is so surreal like an out of body experience. I cannot believe we have to endure this everyday! He explained the same things about the narrowing and the blood flow and that they are still not sure why she is swollen. Dr. Jaquis is trying to ween her completely off of the nitric oxide to see if that helps the blood...we don't know what the hell is going on at this point. Carissa and I don't want to give up, but we are really close to telling them to stop all of this nonsense and just leave her alone. To me, Avery is basically on a different kind of ecmo...treading water to stay alive. We are in a daze and need guidance from God at this point. Please let this all end soon.-Shane


In The Cath Lab

Ave is in the cath lab as of about 5:45 today. I just got a call from the nurse and so far so good. It could be a few hours before she is done. I will let you know what happens.

Cath Today

Early this morning, Dr. Seib called to let us know that there was a cancellation in the cath lab and they could probably get Avery in today. It may not be for a few more hours but we will see. I will update when they take her to the cath lab. There are some risks involved in moving her and the procedure itself, but they are minimal. If they do not find anything that is related to Avery's swelling, there may not be a whole lot more to be done for her. Shane and I will have to make the extremely difficult decision to continue on with her care, or let her go. We are both pretty nervous and extremely scared right now. On top of all of this, we found out that the "cancellation" in the cath lab today was probably because another sweet baby boy in the CVICU who supposed to go to the cath lab today passed away. We are heartbroken for this family. They have been here about as long as we have and they are distraught over the loss of sweet Dalton. Please pray for this family and Avery today. There have been a handful of children who have passed away in the last few days so the whole unit is pretty down.

We are in desperate need of peace right now. My heart is racing and I am having a hard time wrapping my mind around all that has happened over the past few months.



Hanging in There

I talked to the nurse about an hour ago and she said Ave did not have many changes. She is still peeing pretty good. Not as good as last night but still ok. The plan is to do the cath procedure on Tuesday am. Hopefully she will stay strong. Thanks for all the prayers and support. It has been a long 48 hours. I have a feeling it is going to be an intense week. I promise to pass on info as it comes.


Pee = Praise

Good morning! This is Bethany again with an update on Miss Avery.

She had a much better night. She has started peeing a lot more and for that we are all SO very thankful!!! The plan for today is to possibly due a proceedure on Avery's SVC (Carissa has mentioned this in an earlier post and truthfully, I would not know where to begin when it comes to explaining it.) using a catheter. The cath. proceedure carries it's own set of risks and I know Shane and Carissa are worried about those. But, if it saves Avery Mae, then it must be done.

I know Shane and Carissa appreciate your prayers and support so very much. Please be praying for Avery today. She is truly the "Energizer Baby." I can't believe how much she has overcome. Prayers have been answered over and over again.


Avery is Very Sick Today

I just talked with Dr. Garcia and she is very worried about Avery right now. If she does not pee more, she is not going to survive. Dr. Garcia is almost to the limit of meds she can give and Avery has got to pee to make it through the night. If possible, they will do the catheter tomorrow. Things just don't look good right now.



Gathering Info

I first want to say thanks to Bethany for updating for us. Beth is a dear friend who so sweetly volunteers to pass information when Shane and I are unable to do so. She has been down the CDH road and has been an absolute blessing to both Shane and me.

Both tests, the echo and renal(kidney) ultrasound, were done today. The kidneys appear to have some calcium deposits but nothing to be too worried about. They are understandably "diseased" due to all of the things Avery has been through, but that is to be expected. The damage at this point does not seem to be permanent. The kidneys are functioning correctly at this point. The echo shows that the heart function is good. The valves are working correctly and blood is getting to Ave's lungs. All of that is positive information. So, we are still left with the questions about why Avery is puffy. When Avery was born she had two superior vena cavas. Normally, we only have one. This is a common variation of veins and normally not a huge deal. Now during the echo one of the SVC's could not be seen. This could be for numerous reasons but long story short, this may be contributing to Avery's swelling. The plan for next week is to put a catheter in (not too sure about how all that works) and possibly clear up any obstruction in the SVC that may be contributing to the swelling.

So that is where we are at with everything. It is all extremely overwhelming and please forgive me if I have not called back or responded to emails. I love all of you and we feel all of your love but I am just low on energy right now. Shane and I are only able to get through all of this because of the support of ALL OF YOU! I (or Beth) will pass along any changes. We love our precious girl and are holding her hands as she fights for her life. Thank you for holding our hands as we support her.


Avery Update, Prayers and a Special Request

This is Bethany and I have (temporarily) taken over the Keirsey's blog.

First of all, I am sure you are all wondering about little Avery Mae. The update I got this morning is that they are planning to do 2 ultrasounds today to check Avery's kidney function and how much blood flow she is getting to her kidneys. She will also have an echocardiogram today to check on her heart and how it is holding up. Shane said she is still very puffy. They are obviously beside themselves. Avery has come SO far and overcome SO much and this is just a very discouraging time. But, if we have learned anything through this journey with Avery, it is that she is a fighter!!! So, while Shane and Carissa are very concerned, they are not giving up hope.

We are asking for your prayers today for Avery's continued healing. Also, please pray for Shane and Carissa. They are tired, overwhelmed and scared to death.

I (or one of them) will update if there is any new news later today.


While I'm here...

Shane and Carissa are not the type to ask for help, but obviously there comes a time when it's needed.

They have been away from home since early May. They have commuted back and forth...a seven hour round trip. Shane has switched jobs. They are trying to sell their house. Carissa isn't working so that she can be with Avery.

So, I am calling your attention to the "donate button" on the upper side bar of their blog. Any donation would be greatly appreciated and it doesn't have to be much. I realize that in these tough economic times people don't have a lot to give, but even the smallest donation would be appreciated.

Thank you for caring about the Keirseys. I know they appreciate it more than they could ever convey.


Need prayers!!!

We just got done talking with Dr. Garcia. She is our go to gal these days. She is seriously concerned about Avery's kidneys. She cannot afford to go into kidney failure. There is not much that can be done if that happens. I am really scared right now that we might lose her. Maybe I am over reacting but Shane and I are both really scared right now. The doctors can't really explain why Avery is so swollen. I really don't like it when doctors don't have answers. She has come so far and we hate to consider that we might lose her. I want normal back. I am tired and very worried. Please pray for us tonight.


Getting Better

Well as of yesterday, Avery's fluid was negative...which is a good thing. Basically, she peed out more than the amount of fluid that was put in. She needs to be "negative" for a little bit in order for her swelling to go down. The surgeons were in this morning to put a wound vac on the area where Avery had her silo. The silo wound could not be closed completely because there was not enough skin. Slowly over time, the wound vac will pull the skin together. At least that's how I think it works. For those of you how have been through issues with CDH, I thought I would just update you on some of Avery's numbers. Her blood pressure is in the 70's and her heart rate is paced at 140. Her O2 saturation is in the high 90's. Vent setting is at 40% oxygen and rate is 38. Her last CO2 came back at 40. I know all that is confusing and honestly I can't really explain well what all those numbers mean, but most of them are really good.

I am feeling better today. I am slowly crossing things off my list of things to get done. Lots of phone calls and just keeping up with details. Shane is helping a lot and we are hoping to get the house on the market soon. Pray it sells! Kaitlyn has a fever so she is taking it easy today. I am off to the grocery store and then home.

I'll let you know if anything else changes. Thanks for supporting us!



I'm Panicked

I promise I have tried to post for the past couple days and for one reason or another, I have not been able to do it. There are so many things running through my brain right now, I am not even sure where to begin.

Avery update first. She is still EXTREMELY swollen. This has turned out to be a fairly significant setback. The doctors have tried numerous drugs to help her pee more and she just isn't responding. I am freaking out. She looks absolutely horrible and there is no progress being made. It is really hard for me to see her right now and quiet honestly, I dread walking in her room every morning. I leave feeling disappointed and out of hope. I don't know why this is hitting me so hard and I cannot explain my reasoning for being so depressed about the whole thing. I cry every time I walk out of the room. Due to the swelling, they have stopped her feeds and gone up on all her ventilator settings so that sucks. Now, all that being said, she has some good things happening. Her heart rhythm seems to be under control, she is completely off nitric oxide, and up to this point has been tolerating her feeds really well. I would probably be a lot happier about all the other stuff if I could get my mind off the swelling.

So on to other stuff. Many of you may have read Shane's recent post about his job change. This has been a really good thing for him and the rest of our family. He is working hard but much more relaxed overall and much more available for helping me through all this mess. I love him to death and am so thankful for his constant support. So as a result of all of the complications with Avery, we are in the process of moving so that we can be closer to the hospital. This is a huge undertaking and I am having a hard time working through all the details. First things first, we have got to either sell or rent our home in Fayetteville. Then we need to find a house to rent around here somewhere. So I just want to make a note here (for all you who know me well), that I AM ASKING FOR HELP!! If any of you know of someone who would be interested in renting or buying our house, please contact me either through a comment or email. If anyone knows of an appraiser who could appraise our house, that would be good. Eventually we will need help packing, cleaning, and moving so I will keep you posted on that. If any of you have connections in the Maumelle or Conway area as far as rental homes are concerned, let me know. So far, we have gotten a huge outpouring of help and I although I can't tell you all exactly what we need right now, I can give you an idea that these are some of the things we are dealing with. I don't have an exact timeline for all this stuff, but it would be nice to get the house stuff taken care of ASAP.

Please know that we so appreciate all that everyone is doing for us. We realize that we will never be able to thank you enough and hope to pay it all forward someday. Please please pray that Avery will get over this issue with her swelling...her kidneys are being asked to work much harder than they should so shout out some words of encouragement for them.