Keeping up with the Keirseys

It Still Hurts

2011-01-11T14:33:00.002-06:00

It still hurts. She would have been running, playing, talking, and calling me Mommy. She would have been one and a half. I miss the days when she was alive and breathing. I just miss them...the way she smelled, her sweet eyes, saying her name. I don't know what else to say...it just still hurts. I love you Avery Mae and miss you oh so much.

Welcome Baby Morgan Rae!

2010-11-17T21:21:00.002-06:00

Where do I begin?

First of all, let me just say that we are so deeply in love with this baby girl! She is just such a blessing! Shane and I are so thrilled to welcome her into our lives!

Morgan was scheduled to arrive via c-section on November 16th but in Keirsey style, she decided to come on her own time. We heard her cry for the first time at 3:05am on November 13, 2010 and what a sweet sweet cry it was.

We are adjusting to having a baby around again but loving every minute of everyday. Shane has been by my side since Saturday night and I am so grateful for his constant giving.

There were tears when we walked in the door to our house...we couldn't help but wish this was the path with Avery but we are grateful that this is our path with Morgan.

As always, thank you for your constant support!

Summer Days

2010-08-25T19:30:00.003-05:00

It has been a LONG time since I posted anything. Just been busy...

Here is your sneak peak at baby Morgan...I am at 28 weeks :)

Things are good around here. Work for both of us has been going well...Kaitlyn started 1st grade and baby Morgan Rae is growing just like she should be. We have been struggling with the heat around here and are most definitely looking forward to the fall. Kaitlyn turns seven in September, Shane has two 20 year reunions, and somewhere in there I am hoping to get Morgan's room together. It's gonna be busy!!

Hope all is well with all of you. Thanks for keeping up with us! We appreciate your continued interest in our lives! Will keep you posted on Morgan's arrival in November!

Carissa

Anyone Still Out There?

2010-05-08T21:01:00.001-05:00

It is really hard for me to believe that it has been three months since I last posted. The initial reason for this blog was to keep so many of our beautiful friends and family updated on the condition of Avery. As we move forward, I guess it does not occur to me to post on a regular basis. But, because so many beautiful relationships blossomed out of the blog, I feel some pull to continue to tell our story.

So, the story continues. We are growing, changing, rebuilding, and always learning. Avery's first birthday is on Wednesday and quite honestly, it is really hard to believe that we have reached this point. Of course, we think of her often, but our thoughts are more comforting and less painful. She made the most unbelievable impact on my life in her 62 short days. I can't help but believe that her purpose was to somehow open my eyes to a new way of looking at the world. As absolutely horrible as the experience was, I am forever grateful to this precious girl for her gifts.

All in all, things are good for us. We sold our house, I am working, Shane starts a new job on Monday, and Kaitlyn is a month away from Kindergarten graduation! I cannot be more honest when I tell you that we literally take each day as it comes. Day by day...my new mantra. So as we move day by day, we appreciate each moment. We breath...in and out...

November will be an exciting month for us as we are expecting another baby! So far so good, but probably the scariest time for our whole family. I have often prayed and begged for healing...to get to that place where I feel better and perhaps as I get closer to that place, I have become even more terrified of what that means about my connection to Avery. I must learn how to relate her name with fondness and peace rather than worry and sadness. I am getting there and it's just different. So compiled with all the fears about the health of this baby are the complicated emotions that surround the concept of another infant joining the infant that is not here.

So we all go forward. It's all we can do. We are thrilled to be sharing another pregnancy together as a family and look forward to being able to continue to share with you. I will probably eventually start a new blog but we'll see. Thanks as always for walking next to me in this journey. Each and every person who has been a part of our story has a special place in my heart. Love you all.

Carissa

Long Weekend

2010-01-31T09:30:00.002-06:00

Well I've reached my last day of time off. I was out of work last Wednesday and Thursday because Kaitlyn was sick, and then out on Friday because of snow and ice. The snow is melting and we are all anxious to get out and back to our routine!

So the last couple of weeks have been pretty good around here. We are very close to moving into our rental house. We all went over yesterday to take a couple things over and everything looks really good. The grass is in and the fence should be up next week! This is a big piece of our healing so honestly we are all very excited to be reunited with our things! We left our house in Fayetteville on Mother's Day last year...it's hard to believe how long it has been! We have been so blessed along the way with housing and care, and I am just so thankful for everything.

Let's see...two dear sweet friends welcomed beautiful baby boys into the world last week! I am so happy for these lovely women and their families! Many of my cyber CDH mommas are expecting and I am really starting to feel excited about the possibility of adding to our own family!

So on to another week! I'm so happy to welcome February!

Carissa

Grace

2010-01-10T13:22:00.002-06:00

It seems that over the past couple of months, a lot of personal growth has occurred for both Shane and me. I was talking to my beautiful friend Bethany the other day, and she was asking about how we were doing. You know, as I sat there trying to explain how I was feeling, the only word I could come up with was grace. I find this to be an extremely challenging word to understand but for whatever reason, it is on my mind.

We are approaching the six month anniversary of Avery's death and if I was to take you through the past six months, you would see a whirlwind of peaks and valleys. I would say that October was the hardest month for me...and probably Shane as well. Don't know why but it was what I would describe as my lowest point. So some medication and some soul searching helped push me forward and out of the fog. So between the months of October and December I have seemed to have moved through perhaps the worst of MY grieving process. Now tomorrow, I may completely retract that statement!

Today, I feel good. I mean not just ok/good...I mean GOOD. For me, the new year has brought a mixture of relief and fear. I am relieved to be setting some new goals and scared that this new year leaves Avery behind. I have been reading The Shack by WM. Paul Young. It is a very interesting book and honestly, I have really enjoyed it. The book has challenged my faith and strengthened my understanding of grace. Perhaps that is why I have grace on the mind. I truly believe that Avery is my grace. Her beautiful sacrifice has brought so much joy into my life. Not the kind of joy that we often experience in everyday life, but the kind that comes from the deepest places you could possibly imagine. It is painful joy and I feel blessed to have been gifted with her constant spirit. Not long after Avery died, one of our friends wrote the most beautiful poem. Kaitlyn read it out loud the other day and I just cried and cried. It's a strange place to feel comfort and pain at the same time.

As the days go by and I look at Ave's pictures, I feel more and more peace and relief and less and less sadness and anger. So our family continues to climb back up to the place we were before December 23, 2008. Things will never be the same, but in a good way. We are a stronger family and I am continually grateful for the relentless support we have received.

Thanks to all for your constant giving.

Carissa

I'm Gonna Update!

2009-12-31T17:49:00.003-06:00

I'm gonna update...I promise...this weekend. Please forgive me! Things have been nutso! Just real quick, we are all doing really good. Thankful for so much this year! Please check back and get caught up on what's been on my mind over the past few weeks!

Carissa

Here's the Update

2009-11-30T10:56:00.002-06:00

Well, it's been awhile since I have gotten around to posting anything...partly because I have been busy and partly because I just have not felt like there was much to tell. So, here is the latest on what the family has been up too!

The biggest news is that I got a job! I am starting on January 4th at Rivendell Behavior Health. I'm very excited, scared, nervous and all that, but I think this is going to be a great opportunity for me. It is a step towards putting all the pieces back together. I will the counselor for the outpatient day school. There will be a lot of things to put together before I start and I'm hoping everything will work out.

We had a good Thanksgiving holiday. We spent a couple days in Louisiana with Shane's family and then headed back to AR for the weekend. It was great to get away and have some time to relax. I was just not sure how we were going to handle the holiday without Avery. It was really a mixed feeling for me. I so desperately wish that Avery could have been with us. But in a way, it is because of her that we were able to be together as a family for the whole holiday break. It's hard to explain. All in all, we are doing our best to keep going forward.

Kaitlyn is continuing to do great! She is still loving Kindergarten and having a lot of fun making new friends. It's hard to believe that this first year of school is almost half over. I knew it would go fast.

Please continue to pray for us as we continue to heal. Pray that I find after school care for Kaitlyn and that our house sells. We are so very thankful for all your continued support. Your comments and encouragement really do mean so much and we are just so grateful to have such wonderful friends!

Carissa

It's Been A Long Week

2009-11-02T13:39:00.003-06:00

Well, I just wanted to take a few minutes to check in with all of you. The past week was really hard for both Shane and me. Both of us were feeling pretty negative about our situation right now and it has just been really hard to see the light at the end. I know it's there, but it's only flashing...not continuous. I know there are going to be good days and bad, but I am so craving some consistency.

I had a job interview this morning and it went pretty good. I am a little bit concerned about adding another stressful component to our situation, so we'll see. Our biggest challenge continues to be our lack of "home". I am just dying right now to have my things. I want to come HOME. I am thankful that we have a place to stay, but it's going on six months that we have been away from all that we know. I feel like if we could just get that piece settled, we might have a chance at making some progress. Everything just seems to be at a standstill.

It is very difficult to make decisions right now because it is almost impossible to distinguish the truth. One day you feel one way and the next day you feel another. It's so hard to know what feeling is connected to what and in the end, it becomes a big mess of mush. I just wish there was something I could do to make things better. I WANT TO SELL OUR HOUSE!!!! I feel so helpless!!

So please continue to keep us in your prayers. Pray for some sort of patience and guidance. We continue to feel somewhat lost and are just hoping that we are doing the right things.

Carissa

Can You Ever Really Plan Anything?

2009-10-19T13:03:00.003-05:00

So the last week has been pretty good. There were a few days last week that were pretty rough...mostly just because I was bored. There has been a lot of rain around here lately and I did not work a whole lot last week. Shane was sick and in bed for quite a few days. Good news is he is feeling way better and we all had a good weekend.

So mostly, I am just really struggling with how much our lives have changed since all of this stuff happened with Avery. I just keep telling myself that everything happens for a reason, but jeez it's just so hard to believe sometimes. Shane and I have had many conversations about everything that happened and over and over we agree, no regrets. It's just that when all the parts of your life are suddenly stripped, all you can think about is how quickly you can put them back into place. Honestly, I just can't put all the pieces back into place. I want to so badly, but it's just not possible. It makes me so very frustrated. We are recovering from not only the loss of Ave, but also massive changes. I just keep telling myself that I have to trust mother time. I don't like her so much right now. I have to tell myself, "Wait, just slow down. It is ok if all of this does not get fixed tomorrow."

So since I can't fix everything tomorrow, I am going to take one thing at a time. So next on the agenda, finding a job. Hopefully I can find something in the counseling field. The goal is to start in January. We shall see. I guess just keep praying for us. Help us keep the faith.

Carissa

Moving Forward

2009-10-06T09:42:00.003-05:00

Well, it has been awhile since I have had time to sit and organize my thoughts. So I sit here contemplating...thinking...organizing...trying to put into words all that has happened. Over the past few weeks, we have been rather busy. I think this is a good thing. A couple of weeks ago, I was at a nasty low point. It was not pretty, but I reached out to all of you, and with Shane's help was able to stumble out with renewed hope. So here we are...still stumbling a bit, but hey, whatever gets you from point A to point B!?!?

So I would say that the most exciting part of the past few weeks is that I GOT A PART-TIME JOB!!! Woooo Hoooo!! I have this lovely friend and her family owns a Christmas Tree Farm here in Little Rock. Well turns out they need some extra help during the holiday season and so, you guessed it, I am part of the extra help! They have recently added a pumpkin patch and some other fun fall activities so it was a perfect opportunity for me. Basically during the week I will be helping give tours of the farm. Kids come for field trips and I get to guide them through all the fun fall activities. Then starting around Thanksgiving, the Christmas tree fun begins! It sounds so simple and fun and that is what I just adore about it. It is a great way for me to get out of the house and move towards re-incorporating "normal" things into my new life.

Alright so that's the job stuff. Now, let's see...Shane and I have had some busy weekends. Last weekend Shane traveled to Alexandria, LA to visit his old high school as well as some of his buddies. It was good for him to get away and remember his old stompin' ground. The weekend before that, I was in Colorado visiting my family. Shane stayed home with Kaitlyn and I was able to have a really nice time away for a few days. It has been good for both of us to have some time to ourselves to do some of the things we have not been able to do over the past few months. In the coming weekends we are looking forward to some family time and perhaps some Halloween activities!!!

Ok, I also wanted to share with you that we have started attending a grief group called Good Mourning. This program is provided through Arkansas Children's Hospital and is primarily for children who have experienced the death of a loved one. So Kaitlyn is going and hanging out with other kids her age and Shane and I meet with other parents/caregivers. For us, this is just another piece of healing. It is an opportunity for our whole family to discuss how Avery's life and death has affected us. I honestly don't really know what to expect from this group, but I am open. Perhaps that is the hardest part of grief...the willingness to accept the unknown. Grief is a mystery. That is really annoying for me but I'm pretty sure there is nothing I can do to change it.

So overall, I feel like we are doing pretty good. Right now, there are more good days than bad. That may change, but for now, I'll take it. So as always, thank you for your continued support. It means so much to me that you continue to care.

Carissa

Lots to Update

2009-09-29T08:41:00.002-05:00

Hello friends!

I realize that it has been awhile since I have had a chance to update all of you on the last week or so. I have had lots going on and I am hoping to tell you all about it in the next couple days. I was out of town for the last few days and I have tons to catch up on so I may not get a chance to post everything today, but I will get there...I promise!

I wanted to quickly take a moment to thank all of you who responded to my cries for help. As many of you know, I was having a particularly rough time last week. You all gave me everything that I needed in your comments and I am so grateful to have you. It is so hard to walk this road and it just so wonderful to have people to lean on. So, thank you so very much for your love and support.

Carissa

Not My Best Day

2009-09-15T09:01:00.004-05:00

I am in a pretty nasty mood this morning. Not really for any reason...just foul. I walked with Sadie hoping that would help clear things up...not so much. So, perhaps writing will help.

I guess more than anything, I am just frustrated. I feel stalled or plateaued or idle and I don't care for it. In my mind, I want to move forward but there is this little voice that says, "Ah ah ah, not quite ready yet". I don't even know what move forward means or looks like these days. I was talking to someone the other day and saying that although my healing is perhaps unapparent on a daily basis, if I stop and really think about it, there are snapshots of how I have coped over the last two months. The sadness is less often but more intense. I recover more quickly from my reflections of Avery, but am fearful of losing my memories of her. For me, one of the hardest parts of losing Avery is the unknown.

The other day I had my first twinge of excitement about the future. Although we are in a rough spot right now, there are some exciting things to come. New house, new job, future pregnancy. Needless to say, the enlightenment did not last long. It was strange to see that small light. I long to get there and spread my arms out wide and spin in circles. It's like being trapped in mud. You so desperately want to move and you try so hard to wiggle free, but after much effort, no luck. Perhaps you moved a little tiny bit or perhaps you sunk deeper. It is a place where mind, heart, and body cannot align...cannot perhaps even compliment each other. In fact, they are most likely pulling in opposite directions.

So today, I think I need to ask for help. This is not one of my strong suits, but believe me, I am working on it. So here it goes. Will you send me a comment of encouragement? Ok, I did it.

Many of you don't know me personally but my hope is that through this blog you feel like you do in some strange way. Many of you are walking personally with me through the grief and many are not. No matter, your words help.

Carissa

Happy Birthday To Kaitlyn!

2009-09-09T08:29:00.005-05:00

Today we celebrate the birth of Kaitlyn McAlister Keirsey!! She turns six today and I have to say she is quite proud of her many years. She woke up this morning and miraculously had a loose tooth. I tried so hard to wiggle it, but to me, nothing was wiggling. She insisted that it was loose so I said, "ok babe, whatever you say". I pick my arguments carefully these days.

Last weekend we were up in Fayetteville to have Kaitlyn's party. She was able to see pretty much all her friends, and she had a fabulous time. It was important to me to make this a special time for her. Not in an indulgent way, but in a way that would remind her about what an important part she plays in our family. She has had a hard couple months and for the most part, she has done really well. Although I don't necessarily hide my emotions from her, I do try to limit my crying and carrying on when we are together.

There is a hint of sadness today. While I love to sit and reminisce about the morning that Kaitlyn arrived, it is hard to do so without thoughts of Avery's birth creeping in. Obviously, the memories of Kaitlyn's birth are joyous and exciting. I have not gotten to that place when I think about the day Ave was born. It is very discouraging to think about my child's birth and not feel happy. Those should be the happiest moments in life. Right now, the memories of Avery's birth are of raw fear and deep uncertainty. I don't know if that will ever change...

Shane and I were talking the other night about songs. We both love music, but Shane especially has a connection to lyrics. He was thinking about songs that remind him of me or Kaitlyn. He says he thinks of me when he hears "She's Everything" by Brad Paisley and he thinks of Kaitlyn when he hears "Sweet Zoe Jane" by Staind. The song that makes me think of Shane is "Only You Can Love Me This Way" by Keith Urban. During the time that Avery was sick, music was a big part of how we were able to relate to our pain. We have all these songs that take us back to the different stages of Ave's life. Most of them elicit tears and a longing for things to have been different. We were talking about how we want to go back to the days where songs brought happiness and freedom rather than emptiness.

So here we are...attempting to make this a special day for our oldest daughter...but somehow I don't feel 100% committed to it all. It will be a fun day of celebration but there will be a portion of me that is distracted. That's the ugly truth.

I love Kaitlyn will all my heart. She brightens our lives with tremendous energy and a tender heart. What sweet peace we have in enjoying the daily adventures of parenting her!

Carissa

Photos Of Ave...Some of These Are Rough

2009-09-02T11:14:00.007-05:00

I have been wanting to post some photos of Avery during her last hours with us, but I have not had access to them because they are on our laptop. Many of these photos were taken by an absolutely gifted photographer named Jill Meyer. She volunteers her time to take photos for families who are losing a baby. Her nonprofit is called Now I Lay Me Down To Sleep. At this moment, the website has escaped me but you can google her info if you want. Her worked truly blessed us during our time to say goodbye to Avery. She captured moments that are so precious to both Shane and me. I am forever grateful for her gift.

As many of you remember, Avery's last couple of weeks were pretty rough. She had a lot of swelling and she really did not look like the baby we knew in the early weeks. No matter her appearance, she is ours and we love her forever. In these photos you will see our family smiling over Avery. In that moment, we were so happy to be holding her and spending real time together as a family. It may be odd for some to see us with smiles during times of such strife, but it was joyous in its own way. I hope you are able to look at these photos and remember how Avery touched YOU personally.

Love, Carissa

Oh How The Days Go By

2009-09-01T08:31:00.002-05:00

I really can't begin to write anything about myself until I mention the most recent sweet babies who have lost their battle with CDH...Baby Jackson and Baby Ireland. Please keep their families in your thoughts and prayers as they begin to pick up the pieces.

I was catching up on Facebook this morning and I ran across a post written by an old friend. His son struggles with a medical condition and they have just recently found out that their options are far from optimal. He wrote, " This fallen world has no friends, but that’s where we find GOD. That’s where grace comes alive and hope resides." That is a tough thing to swallow. I have never been one to get too philosophical about why our lives are the way they are. We each have a story, hurts, pain, questions, joys, and struggles. They all differ, but they make us who we are. I challenge myself to find the grace and the hope during my times of monumental pain.

So, a had some crappy days last week. I knew it was coming. That's one of the hard parts of grief...it's sneaky and unpredictable. I often wonder, "When is my bad day coming? I haven't had one in awhile. I know it's coming and what will it bring?" Unfortunately, my bad day arrived on my wedding anniversary. That sucks. It was last Wednesday, August 26th. Six years of marriage and all I had to offer was a backwards attitude. Poor Shane. He walked in the door at 3:30 to me slamming things around. I'm pretty sure that was not what he was expecting. I managed to work through my temper tantrum and we made it out the door for dinner. It ended up being a good night. Over the next few days I was able to reflect on lots of things...and cry...and miss Avery. I am learning to be flexible in the emotional sense. It is not easy for me. Shane has helped me with this throughout our marriage. He is much more free spirited than I am. He models for me the art of flexibility and I love him for that. I think that it is an integral part of marriage...flexibility and compromise. For us, a constant work in progress.

Anyways, we had a good weekend. We put up a tree swing for Kaitlyn and enjoyed some lovely outside time. The weather has been really nice the past few days. Lately, I have had some times where I have thought of Ave and had more peace. Trust me, most of the time my thoughts of her are followed by fountains of tears. I went the cemetery yesterday and just sat with her. I cried a little but mostly is was just comforting to be there with her. We shared time and that's all I really want...time.

This weekend we head up to Fayetteville to celebrate Kaitlyn's sixth birthday! She is super excited to see her friends! I look forward to seeing my friends and hopefully having some time to relax. There may be a little painting to be done at the house, perhaps a cocktail to be had, and possibly some cake eating...I anticipate we will have a good time!

I am reminded every day that life goes on...with or without me. Some days I let it go on without me but today I choose to go on with it. Love to all of you...thanks for partnering with me as I walk this new path.

Carissa

P.S. It is my intention to begin tackling the countless thank you notes I have to write. I want to make special reference to all of you who donated to the Avery Mae Fund. We have been able to do some magnificent things with the money you all so generously donated! Please know that we are so thankful for your generosity! I have not forgotten...I am just simply behind.

Not A Bad Week

2009-08-24T08:12:00.002-05:00

It's weird to to go from posting practically every minute to just a couple times a week. I look on the blog sometimes and I am amazed that it has been so long between posts.

Overall, I would say that the past few days have been pretty good. Last week was pretty busy as I hustled to get Kaitlyn ready for Kindergarten. She started on Wednesday and she did such a great job. I am so proud of her. Shane and I walked her in on the first day and from then on, she was on her own. I drop her off in the morning and pick her up in the afternoon and it is such a pleasure to see her smiling face run to the car. What a lovely way to start my days and enter my evenings!

So here I am on Monday morning...not sure what to do. I was at this place not too long ago. I finished my masters in December 2008...we had just found Ave was going to be sick, and I was not sure how to spend the coming months. During January and February, I just took it easy. I had been in school for three years, so I had a lot to catch up on. It was nice to have play dates and eat lunch with friends. So now, I am back at this place of not having much to do. So I am debating about whether or not it is time to start seriously looking for some kind of part-time work. I think it would be good for me to have some consistency to my schedule. We'll see how things go.

As I said before, the past week was pretty good. There were a couple tough moments. I find that I miss Ave the most when we are together as a family. It just feels like something is missing. We were sitting together eating spaghetti (Kaitlyn's favorite) and we were getting ready to have dessert. Shane had bought KK this ice cream cone thing that looked like a clown and we just looked at each other and thought, Ave should be here...she should be eating ice cream and laughing. In many ways, it was a beautiful and happy moment, but then again it was subtly laced with sadness and disappointment.

We watched Hannah Montana The Movie on Saturday night as a family. It is a really cute movie and such sweet peace to hang out together on the couch. Prior to Avery's arrival, we did not get a chance to do as many family activities. Shane's job required him to work a lot of nights and it was not common for us to spend as much time together. In fact, since May, we have spent more time together than we have in years...and I love that. So really, it is because of Avery that we are able to bond as a family. The ironic part of all of that is that she is not here to be a part of it. That truly is one of the most painful parts of losing her.

So, we miss her often and think of her regularly. We move through each day with caution and perhaps some hesitation, but we move. I will continue to learn how to live each day without Avery and I will cling tightly to the comfort of my friends and family. I love you all so dearly and am so grateful for you precious people!!!

Carissa

Rough Day

2009-08-16T16:55:00.002-05:00

I'm having a kinda rough day today. There really is nothing in particular that has happened, I'm just down. Shane, Kaitlyn, and I had a good family morning and then worked in the yard, but I am just not feeling very happy. I guess this is to be expected. I just really don't like feeling like this.

I do have to tell you though, that Shane is the best daddy ever. He brought home this HUGE box for Kaitlyn to play with. He spent the morning making it into a house. This included cutting out windows and a door. They were so sweet together. Watching them color and decorate it together was priceless...Kaitlyn loves that man so much. It was so cute. What simple pleasures.

By the way, we are almost officially out of the church house. I still have a few things to get out and I need to clean, but we are pretty much moved. Maybe that has something to do with my mood. Moving is tough, and although I knew we could not stay at the church house forever, it is still really hard to leave. I think that Shane feels differently. For him, it is a lot of painful reminders. For me, it is a connection to Avery. It is the house that I spent all my time in while she was alive. I'm crying as I write this. It is the last thing for me to let go of that has to do with her. My body is all back to normal, we don't really go to the hospital anymore, the house where I was pregnant with her is empty, and now the house is gone. It's like I have now cemented moving on. The emotions are still going crazy, but the physical connections to her are starting to fade. Oh so hard.

This is all part of the process and moving on is important, but it's really hard. Please keep us all in your prayers.

Carissa

Too Much For One Post

2009-08-13T10:57:00.002-05:00

Over the past week, I have tried to get on here and post some of the many thoughts running around in my head. For whatever reason, I could not find time to just sit. I find that over the past few months it is good for me to sometimes just sit. So here I sit not knowing how to organize all the things I want to say. So, I'll just let them flood out...I guess I'll give some props to Freud and we'll call it free association...

I guess the first thing that comes to mind is that Avery has been gone for about a month. She has been gone about half the time that she was here...that is crazy! Do I miss her? Yes, of course. Regrets? No. Am I learning how to live without her? SLOWLY, but yes. Will I ever forget all of this? No. Will I move on? Yes, in a new sort of way. I was thinking in the car the other day about how to explain what I am going through right now and this came to mind. It is like your windshield being hit in the center with a HUGE rock...and then, from that initial break there comes numerous cracks. So, Avery's death is my initial break and well, there is a long list of cracks...being without a place to call home, out of routine, no job, crazy emotions, missing Kaitlyn, missing my friends and family, moving from Fayetteville, paperwork, bills, and so on...it could go on but I'll spare you :) So I am wondering if I have even been able to deal with Avery's death yet? It feels like I am just dealing with all the cracks and slowly moving my way towards the break. I wonder what is going to happen when I reach the break? I am reading this and it sounds a little cheesy...sorry.

So both Shane and I are moving through each day with hesitation at times, but with strength. I have to say that many mornings I wake up and say to myself, "How am I going to make it through the day?" Obviously, I always make it through the day in a literal sense, but on a deeper level, it is a challenge to be emotionally available for the things that need to be accomplished. Whether it's Kaitlyn's needs or phone calls, there is the underlying feeling of absolute defeat. Some days I have to push myself to enjoy the day whereas prior to Avery's diagnosis, I would wake up most days refreshed and ready to rock. So this is where the counselor in me starts to have a therapy session with myself. This is what I would say to clients so this is what I say to myself...What would happen if I stopped pushing to enjoy the day? What would it be like to just feel sad, defeated, unproductive? What am I afraid of? What's the worst that could happen? So some days, I think about this stuff and I realize that it is ok to be sad and cry. It is ok to feel powerless. It is ok to not be the strong woman. Most likely, the worst that can happen is that my list of crap to do waits until the next day, and that's ok. So I am working on being sad when I need too.

That was deep. So back to the surface...this past weekend we enjoyed absolutely fabulous time with some of my family in Tulsa, OK. It was just what we needed...pool, grilling, and sitting (and napping). I feel refreshed. Over the past few days I have noticed that I have thought about Avery less...not zero, but less. I have been doing some of the things that I enjoy and I have truthfully enjoyed them. I will continue to work through the "cracks" and "the break" and will continue to share my process with you. I can't really explain why I do this, but I guess it is my hope that someone else can benefit in some way from my experience.

Ok, so I am leaving myself a reminder that I want to tell you about our recent trip to ACH and the heart unit. I find that if I don't write things down, I forget...just ask Shane...it's driving him nuts.

Carissa

Still Here

2009-08-12T21:54:00.002-05:00

I have been super busy the past week or so. I have had lots of thoughts brewing in my head. When I get a moment to sit quietly and update you all on everything, I will. Thanks to all who have continued to give in precious ways. We are continuously reminded of the generosity of dear friends. I cling tightly to the constant support. I truly believe that it is that support that has guided both Shane and me through the past few months. We are forever grateful!

It's been a month since Ave's death...love you baby girl!!

Carissa

Don't Know What to Say

2009-08-04T13:38:00.003-05:00

The past few days have been such a wave of emotions that I am not even really sure where I am at during this moment. I can't even really say that there have been good days and bad days...it's more like good seconds and bad seconds...things change so quickly. I am looking forward to the days when I can put on mascara with pride in knowing it won't be running down my face at some point during the day. I think at this point, Shane and I are both totally emotionally exhausted. We have had to make so many serious decisions over the past three months and we are just totally wiped out. I swear, if one more thing drops out of the sky onto my plate, I might have a nervous breakdown. At this point, I am so paranoid that Kaitlyn is going to get the swine flu. I mean it would just figure?!?!

So just to update...after much discussion...we have decided to stay at Shane's moms house for a little while or at least until our house sells. She has generously offered her house to us. She is going to stay with some friends so that we can have some privacy. The house is in Benton which is about 20 miles southeast of Little Rock. We looked into trying to rent something in Conway, but the bottom line is, it would be just too much money to pay our mortgage and rent something. It's just not worth it. Sooo, this seems to be the best option. Although we are of course grateful for the opportunity to stay at her house, we are both craving our own sense of "home". We will get there...

I am working on getting Kaitlyn enrolled in school and then I will begin to look for some kind of part-time work...not sure what, but I'll figure it out. My mood has been pretty erratic over the past couple days. I have been running in the mornings and that really seems to help keep me sane. I about had a stroke this morning it was so hot. I was thinking of starting this P90X business...we''ll see. All in all, I'm still above water. Honestly right now, I am not sure I have had a chance to work through Avery's death because I have been so distracted by all the emotions and aftermath surrounding her sickness and death. I'll get there...again, time. Time is so relative...I wish someone could just tell me that on blank date, I will feel better. Oh well, Shane and I just take it one day at a time...one foot in front of the other. Love to all!!!

Carissa

A Little More Normal

2009-07-31T09:34:00.002-05:00

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.

Carissa

Worn Out

2009-07-25T21:56:00.002-05:00

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.

Carissa

Reality

2009-07-23T09:19:00.002-05:00

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.

Carissa

Moving Forward

2009-07-22T12:02:00.003-05:00

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.

Carissa

Memorial Video

2009-07-21T11:59:00.004-05:00

Quiet

2009-07-19T15:59:00.002-05:00

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.

Carissa

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

2009-07-19T07:27:00.003-05:00

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.

Clarification

2009-07-16T11:22:00.002-05:00

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.

Carissa

Time to Celebrate!!!

2009-07-15T21:11:00.004-05:00

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

2009-07-15T11:47:00.002-05:00

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!

Carissa

Tuesday Afternoon Update

2009-07-14T17:19:00.003-05:00

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...

2009-07-14T11:10:00.002-05:00

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

2009-07-13T19:13:00.001-05:00

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

2009-07-13T13:21:00.002-05:00

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.

Carissa

Hanging in There

2009-07-12T21:31:00.002-05:00

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.

Carissa

2009-07-12T13:27:00.001-05:00

Pee = Praise

2009-07-12T09:45:00.002-05:00

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

2009-07-11T16:13:00.004-05:00

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.

Carissa

Gathering Info

2009-07-09T18:01:00.003-05:00

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.

Carissa

Avery Update, Prayers and a Special Request

2009-07-09T09:59:00.004-05:00

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!!!

2009-07-08T19:31:00.002-05:00

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

2009-07-06T10:30:00.003-05:00

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!

Carissa

I'm Panicked

2009-07-04T12:15:00.003-05:00

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.

Carissa

Looking Better

2009-06-29T10:43:00.002-05:00

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!

2009-06-26T09:12:00.002-05:00

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

2009-06-25T18:44:00.003-05:00

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

2009-06-23T19:05:00.004-05:00

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

2009-06-20T13:31:00.001-05:00

My Chest is Closed!

2009-06-20T12:52:00.002-05:00

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

2009-06-18T13:37:00.002-05:00

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!

2009-06-16T12:25:00.002-05:00

Readjusting

2009-06-16T11:28:00.002-05:00

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

2009-06-15T13:59:00.002-05:00

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

2009-06-14T13:17:00.003-05:00

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

2009-06-12T18:23:00.003-05:00

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

2009-06-10T12:23:00.001-05:00

One Month

2009-06-10T11:57:00.002-05:00

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

2009-06-08T16:42:00.004-05:00

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

2009-06-07T14:57:00.004-05:00

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!!

2009-06-06T10:47:00.002-05:00

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??

2009-06-05T12:26:00.003-05:00

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!

2009-06-04T14:03:00.002-05:00

...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!!!

2009-06-03T14:46:00.002-05:00

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

2009-06-03T10:43:00.002-05:00

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

2009-06-02T16:35:00.003-05:00

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!!!!!

2009-06-02T15:27:00.002-05:00

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

2009-06-02T10:59:00.002-05:00

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

2009-06-01T20:28:00.002-05:00

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

2009-06-01T14:35:00.001-05:00

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.

Good night's and Thank you's!

2009-05-31T22:25:00.002-05:00

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

2009-05-31T09:28:00.002-05:00

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...

2009-05-31T01:15:00.003-05:00

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

2009-05-30T18:35:00.002-05:00

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

2009-05-30T13:00:00.002-05:00

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

2009-05-29T12:47:00.002-05:00

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

2009-05-27T13:42:00.002-05:00

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

Wednesday Morning Update

2009-05-27T09:16:00.002-05:00

Shane and Carissa got an early morning phone call that Avery was not doing well.

She was having some "compartement bleeding" and had not peed in 10 hours. The doctors decided to do a surgical procedure to open Avery up and relieve some pressure. They were unable to go through her original incision because of the gortex patch that was placed under it. So, they made a new incision and inserted a silo. Her condition improved and she began peeing right away. They have also reduced her Heparin as much as possible, as it's a blood thinner and they want her bleeding to be controlled.

As you can imagine, that was not a very fun way to start their day, but they are relieved because of the immediate turn around.

Please, keep Avery in your prayers. She is bound to hit a few bumps on the road to recovery.

I will update if I hear anything else...otherwise Shane and Carissa will update later, I am sure.

P.S. She did not come off of ECMO yesterday, but was trialed off for a while. They are going to give her a couple of more days to rest and try it again.

Oh So Close

2009-05-26T12:29:00.002-05:00

Reports this morning continue to be good for Avery Mae. Everyone is cautious as decisions are made, but overall we are getting closer to thinking about getting Avery off of ECMO. Her ECMO setting is down to what the team considers "idle". We will possibly do a trial run off of ECMO this afternoon. I am anxious and scared, but trying to be patient. It may take several trials before she is actually taken off completely. I know that Avery is in charge and so I am trying to just stay calm.

I am still trying to heal. I am moving slowly but getting things done for the most part. My mom is still with us, and her help has been a life saver. I will let you all know as soon as we get a better idea of how Avery responds to the adjustments to ECMO.

Carissa

Special Monday

2009-05-25T16:45:00.003-05:00

Avery continues to show stamina and progress. She is down to 60 on her Ecmo unit down from 95, which is really exciting. The tech said they can only drop to 50 because that is the idle speed. Dr. Seib said we will try to have her on her own for a bit in a couple of days to see what she can handle. The REALLY big news is that her catheter came out today and rather than risk a scratch from putting it back in, she is free peeing! So Carissa and I were allowed to change one diaper each...Wooooo Hooooo!She was very peaceful all day and we are resting up for the decisions that are to be made over the next couple of days. Hope everyone had a great Memorial Day!

Still Quiet

2009-05-24T16:24:00.004-05:00

Just to give all the waiting eyes an update, Avery continues to remain stable and quiet. The team taking care of her has had to actually increase her medication in order to keep her still and quiet. Apparently she really wants to get off her back and wiggle! The team is continuing to ween the ECMO circuit and turn up the ventilator. So far, Avery is tolerating this well. I spoke briefly with one of the surgeons who operated on Avery's hernia...he seemed very pleased with her progression and seemed optimistic about getting her off of ECMO. I hang on every word they say and today he said, "WHEN she gets off of ECMO" rather than "IF she gets off of ECMO". All in all, we are taking each day slowly and trying to let our little girl rest. It is so hard...all I want to do is kiss her and pick her up...hopefully soon.

We enjoyed visits from dear friends and family today. The love and support we have received continues to carry us to the next day...thank you friends. Kaitlyn is back with us for a couple days...I am so happy to see her. I am so torn between my two girls. KK is thrilled to see us and her sister. It's so fun!

Our time in Little Rock continues to be full of blessings...especially the house that we are staying in...thank you Pulaski Heights Baptist Church! I expect that in the next couple days we will continue to ween the ECMO circuit and keep take each day slowly. We will continue to pass on information as it comes!

Carissa

Memorial Day Memories...

2009-05-23T14:13:00.003-05:00

Nothing major to report from the weekend crew at ACH. We had lunch at hospital with Mimi and a friend. Avery had a few more SVT's last night, but they kept it under control. They also turned on the oscillator for her lungs and went down on her Ecmo circuit a couple of notches...great news! I saw Dr. Seib in the cafe' and he had good things to say about her progress. We have friends and family coming to visit tomorrow and other than that we are really trying to let her rest her little eyes and lungs. We saw her stitches from the CDH repair for the first time(pic above) and I don't think she will ever be able to tell she had surgery when she gets to her "bikini" years!! All in all we are staying positive and continuing to lean on each other. Thanks to all and have a blessed Memorial Weekend.

A Bit of Good News

2009-05-22T14:46:00.002-05:00

I just spoke with Shane and he seemed pretty encouraged by some news he had gotten from a Neonatologist. It seems like everyone is quite pleasantly surprised by Avery's endurance and strength.

Her ECMO support has been weaned down to a moderate level, so she is doing quite a bit of work on her own. She is still battling pulmonary hypertension, but that is pretty much the norm for babies with CDH.

The doctor said he has only seen one other baby survive under the circumstances that Avery has, but he is quite optimistic about her strength and says they plan to take things one day at a time. There is talk of trying to take her off of ECMO in three days to a week.

So, it's good news today. Avery is kickin' butt and takin' names!!! Bless her sweet, little heart.

Keep up the prayers!

Day 10

2009-05-21T19:13:00.002-05:00

Today was a good day for Avery Mae. She has been stable for the most part and resting comfortably. As far as I know, she has not had any other issues with her rapid heart rate so that is good. One of the doctors put another IV in her femoral artery so that there is another way to get meds into her little body. The doctor said it would be faster and much needed when the time comes to get her off of ECMO. I felt encouraged that they are beginning to think about preparing her to be off ECMO as that will be the true test of how the lungs and heart will do on their own.

As far as we are concerned, we have been doing our own little separate things today. Shane spent some time driving around and also went to Walgreens to develop some pics of Avery and the family. I went to the mall briefly to get out of the waiting room and the two grandmas went to see Angels and Demons. Hopefully tonight and tomorrow will be uneventful.

Until tomorrow-Carissa

Many Thanks

2009-05-21T10:55:00.003-05:00

This morning is a new day and both Shane and I got some rest overnight. I wanted to just take a moment to give some direct thank you's to the many friends and family members that have been supporting us through this extremely tough time. We are so grateful to each of you have given in his/her own special way.

We have many friends in Fayetteville that are faithfully taking care of some of the things we hold dear and I want to thank you for all the work you are doing. I know my daughter is happy, my dog gets a walk, and the flowers in my yard are watered. I think of you all every night and am eternally grateful for all you have given.

As for those of you who are here with us, we have no words to express the gifts you give. All of the support from Tradehome Shoes... thank you for allowing my husband to sit by my side with no questions asked. Everyone in Dr. Wendel's office, each of you precious ECMO technicians that keep our daughter as safe as possible, all the friends that have helped translate the medical portion of this journey, every single nurse and physician that has been a part of Avery's journey, our family members who have sacrificed their days to sit with us...and many many more who have sent prayers and thoughts our way. Please know that you help in more ways than you could ever imagine.

As for Avery, this morning she is still doing well. The team has made some adjustments to one of her IV's in hopes that it may decrease the occurance of her rapid heart rate. She still looks good and appears to be readjusting to her newly placed organs. We are getting close to the 24 hour mark of surgery so we will continue to wait and practice patience.

Again, please feel our appreciation and gratitude!

Carissa

Details

2009-05-20T20:40:00.003-05:00

As promised, I am here with the detailed update...

As Carissa said, the surgery went well. Avery came through it like the champ that she is.

However, the news that Shane and Carissa got after the surgery was not as good as expected. Matter of fact, it was just the opposite.

Avery's stomach, intestines, spleen and part of her liver were in her chest cavity and were moved back down. The hole in her diaphragm was too large to be closed with the muscle, so they had to use a gortex patch. She has a pretty good some visible left lung, which is good. They didn't address her right lung at the time. They were unable to completely close her belly, so they placed a patch across the gap that will grow with her as she grows.

Avery's heart struggled quite a bit during the surgery. She went into SVT (which is, a technical term for a very rapid heart rate) during surgery and they had trouble getting it back to a normal level. Shane said that her heart beat got as high as 247 beats per minute. However, at last report it had gone down.

Avery is experiencing some swelling and oozing (bleeding), but those things are both to be expected after surgery.

Avery, Shane and Carissa need your prayers and love now more than ever. They were told this afternoon that Avery's chances of survival are very small. She has a lot of odds stacked against her.

But, we know that God is the only one that knows the plans for Avery's life. Plans that no doctor could possibly know. Avery is holding her own and no one is giving up, but as you can imagine the news was devastating.

The next 24-48 hours are expected to be rough for Avery, so please be in prayer for her. Please be in prayer for Shane and Carissa...for their strength and peace of mind.

She's Out

2009-05-20T19:22:00.002-05:00

Details to come later, but I just wanted to let you know that Avery is out of surgery and the first thing out of the surgeons mouth was "everything went well". I guess that is a good sign seeing as surgeons don't usually spew BS. We are all doing ok...just dealing with the news in our own ways. The next 24-48 hours are expected to be rough for little miss thang...I promise that Bethany will update with all the details later tonight. We appreciate all the love you have all been sending. Avery has accomplished a lot in her eight days and we sure hope she sticks with that trend.

Love to all- Carissa

It's About That Time

2009-05-20T14:16:00.001-05:00

Surgery is scheduled for 3:30pm. I will update as soon as I hear anything.

Please be praying!

Today's the Day!

2009-05-20T10:20:00.003-05:00

Avery had a great night! No clotting. No bleeding.

The platelets have arrived!

The surgery is scheduled for this afternoon.

Be praying!

The Waiting Game

2009-05-19T15:46:00.002-05:00

Well, I just got word that the surgery has been delayed again, but this time it's not due to anything of concern with Avery.

I guess the hospital is out of platelets for Avery's blood type and they are expecting more to arrive tomorrow from Missouri or Texas.

So, they will wait a little longer...

Proud Mommy & Daddy

2009-05-19T13:17:00.003-05:00

Big Day!!!

2009-05-19T11:47:00.003-05:00

I just got an email from Shane...

He said that if all goes as planned, Avery will have her CDH repair surgery later today!!

The doctor did an echo of her heart and said that hole is still there, but the good news is that she does not have pulmonary stenosis, which is the narrowing of things that...shouldn't be narrow. (Hey, I'm not a doctor!) I think basically what it means is that there is good blood flow between Avery's heart and lungs.

They are changing her ECMO cicuit again (which she has done well with in the past) and giving her some steroids in preparation for her surgery this afternoon.

Also, today is Avery's one week birthday!!! Happy Birthday, sweet girl!!!!

Please, pray for Avery, her doctors and her parents this afternoon. I'm sure all will be fine. This is a BIG step in the right direction!!!

Shane wanted me to pass along the address of the house where they are staying...

The Fields Centre
Attn: Keirsey Family
4000 Woodlawn
Little Rock, AR 72205

Almost a week! Energizer Baby!

2009-05-18T13:02:00.004-05:00

Setback

2009-05-18T09:23:00.002-05:00

I just got an email from the Keirseys...

The doctors have decided to hold off on the surgery for now.

Avery is still have some bleeding and they feel that the surgery would be too risky at this point. They believe that they may not be able to do the surgery until Avery is off of ECMO, but they don't believe she is strong enough at this point to hold her own without it. The doctors are discussing options.

Carissa said that basically they are "between a rock and a hard place."

Please pray for Avery, for the doctors who are making big decisions and for Shane and Carissa. I will update as soon as hear anything else.

Hope for tommorrow!

2009-05-17T18:37:00.004-05:00

Well here we are on our sixth day since baby Avery graced our presence. We had a pretty good day with all sorts of visitors and sweet gifts for Avery Mae! She had a bout with low blood pressure again and on and off heparin, but all in all she is still stable. At one point when I was in with the cardiologist, as we discussed her chest leak, he said that Avery had a strong enough heart to pump against the flow of ecmo! Good news!I also forgot that tomorrow is CDH prayer and awareness day...coincidentally Avery's surgery day! We will have more prayers on this day for CDH awareness than any other. God really does work in mysterious ways. Other than losing my camera sd card and not being able to get my old Honda out of park, we are feeling very blessed. Looking forward to and a little scared for her surgery tomorrow, but when that is over they can assess her organ placement. Then we move to the next step of weening her off the ecmo machine. Oh yeah, I almost forgot. As I sat with Avery today, an Angel One heli was taking off causing vibrations and she quivered and opened both eyes almost all the way! Simple pleasures.Thanks again, Shane father to Kaitlyn Mac and Avery Mae.

Mommy's and Daddy's love going into day 6!

2009-05-16T23:17:00.002-05:00

Day 5

2009-05-16T12:37:00.003-05:00

Well, this is my first time to post since Avery has been born. Shane and Bethany have been doing a great job of keeping everyone posted on the ongoings around here. Quite honestly, I have been running around like a crazy person all week long. I have not had much down time so I have not had a chance to post on here. So let me just officially say, thank you to all of you for your continuous support. We are taking each day as it comes, and actually feeling positive for the most part.

As of today, Avery is still stable and doing well. She is opening her eyes, moving around, and pooping and peeing...just like her father :>). She is doing all the things a little baby should be doing. Last night we had dinner with some dear friends and it was so nice to get out and have some social time. We laughed (I drank wine..hehe) and just had a really relaxing time. When we got back to the hospital, we went to say goodnight to Avery. I was sooooo tired and drained and probably feeling the wine, but I really wanted to tell Avery goodnight. When we went in she was moving a lot and opening her eyes and I just burst into tears. It is almost harder to see her awake. She wanted to make noice and cry and I never wanted to hear a baby cry so bad in my life. The nurse said she had been rooting a lot and all I wanted to do is pull her out of that bed and nurse her. It killed me!!!! I felt so helpless. It was like I couldn't give her what she wanted. Anyways, today I feel better and it was good to have a hard cry. Shane and I went back to the house and just cried and held each other. Sometimes uncontrollable crying is good for the soul.

Today we will again be surrounded by friends. We hope to make a trip to Target and maybe Old Navy to grab some necessaties and make a little sign for Baby Ave! Thanks to everyone again...to be continued.

As for our "FREE" house, We will serve the LORD!!

2009-05-15T18:55:00.005-05:00

A Day of Blessings

2009-05-15T13:29:00.002-05:00

I have gotten three text messages from Shane today...

One said that they got to change a poopy diaper! That is good for two reasons...the first one being, that when your child is in the hospital you can do very little to feel like a "real" parent. You get excited about things like...well...poopy diapers. The second reason that it's a blessing is that it means Avery's digestive system is functioning properly.

Another of Shane's texts said that Avery has been moving around and even opening her eyes!!! How exciting is that to see her eyes for the first time??? Also, due to the bleeding that Avery was having a couple days ago, the doctors took her off of Heparin (which is a blood thinner that is very important for babies on ECMO so they don't clot), but due to her improved condition, they are putting her back on it. That is good, too. It lessens her chances of complications from ECMO.

Last, but not least, Shane and Carissa have been given a place to stay...a house not far from the hospital...free of charge. I just teared up writing that. God is so good. He really is so, so good.

CDH repair surgery is scheduled for first thing Monday morning if all goes as planned.

So, needless to say the Keirsey's are having a very blessed day and lovin' every minute of it!!! Keep the prayers coming!!

These are more pleasant pics!!!

2009-05-14T18:14:00.005-05:00