An Angel for My Angel

"Angel of Grief" (Rome, Italy)

Wow. I was searching online for information on loss and grief when I stumbled upon this magnificent memorial/gravestone that was sculpted in 1894 in Rome by a husband after his wife passed away. I'm not sure that I have ever felt so moved toward a piece of art. It's as if the beauty and sadness are at the same intensity. It feels so real to me. Just thought I would share this beautiful angel for my angel.

Two Months

It has been two months since Kaitlyn passed away. To me it feels like eternity. To say that it has been a tough road since her death is an understatement. Every day comes with new challenges and we are trying our best to take one day at a time. 

Many of you may wonder what there is that you can do to help. What we could use most are prayers. Not only for our family but other families who have lost a child to NPD recently (or from any cause). 

I came across a list of prayers for grieving parents last night and I want to share it with all of you as it seemed to speak directly to my heart. 

Please pray...

• That God would be our refuge. (unshakable trust) Ps 11:1
• That God’s love and presence surround us day and night. Rom 8:38-39
• That God’s strength would help us through the grieving process. Ps 27:13-14, 29:11
• That we will accept God’s wisdom, knowledge, judgments (decisions), and ways rather than ask “why”. Rom 11:33, Prov. 3:5-6, Is. 55:8-9
• That we will not doubt God’s goodness or faithfulness. Rom. 8:28-29
• That guilt and depression will not overtake us. Phil 4:8
• That our marriage will be strengthened as we grieve uniquely. That we’d give each other the freedom to grieve differently.
• That we balance grief with our responsibilities as parents. (purposeful and consistent in love and discipline) 
• That our son would be protected during this confusing time as mom and dad grieve, and that he might have a sense of normalcy and security. 
• That we would not feel alone, but sense God’s presence, and lean on the Holy Spirit as our Helper and Comforter and Truth. 
• That we would experience His peace like never before, and grace sufficient for each day/minute. 
• That the Lord would guard our hearts from words that hurt instead of comfort. 
• For wisdom to discern “what to do next” and know “where to go from here”.
• That we could begin to see His plan… a mere glimpse of the purpose of our pain... again, no matter how many times it seems to change. 
• That we choose to be gracious and kind to each other instead of justifying criticism and frustration when we are hurting and sad.
• That we’ll be honest with our emotions and won’t be afraid to cry.
• That we would not waiver in our trust, hope, or joy in our Heavenly Father, nor would we lose our praise even through the tears. 
• Even though life goes on (much more quickly for everyone else) that we know/trust God is with us right where we are. Remembering that He hears our cries and sees our tears. 
• That we’d always be mindful of the hope of heaven. That we’d be eternally focused and not be comfortable to get caught up in the “stuff” of this world. 
• That our family will overcome spiritual battles. 
• That through our loss, because of our children, Kaitlyn and Cole; people will see the need for a personal relationship with God. 
• That in time we can comfort others with the comfort that we received. 
• That we would not hold tightfisted “our” children or “our” things. That we see them as gifts entrusted to our care for the time being.

Picking Up The Cards

I always think of Kaitlyn when I see this painting. Done by an 11 year old! http://www.artakiane.com

Since March 22^nd, the day Kaitlyn passed away; it has been like throwing a deck of playing cards in the air and picking them up one by one. 

Each card is different, yet evokes different emotions and some you find where you least expect them to be.

I know that God has a plan and that once I pick up all the cards, I will be able to move forward and make a difference in this world, just like Kaitlyn did. 

The bond between a mother and her child is one that is so deeply rooted in the soul that it is almost incomprehensible. The emotions I have felt range from joy that I got to BE her mother and that she made such a difference in others’ lives, to anger and rage that her innocent life was taken away.

I am dedicated to making sure Kaitlyn is never forgotten and to helping other families who are going through a similar situation cope and get the support they need. They need the support and knowledge of someone who has lived and seen first-hand what NPA can do.

Sorry if I have been quiet lately, I just have to pick up the cards first. 

P.S. A wonderful piece of news... I was recently nominated to be on the Board of Directors for the National Niemann-Pick Disease Foundation! Not official yet, but I know that I can make a significant impact on the NPD community and accelerate the search for a cure. If anyone knows me well enough; when I say I'm going to do something, I put everything I've got into it. Look out NPD! 

Bittersweet

That is the one word that describes how things are... bittersweet.

I've been at such a loss for words lately. I don't know how I feel each day. Some days I'm numb, sad, angry, and okay all at the same time or at different times, so it has been difficult to try to and explain what's been going on.

When Kaitlyn was diagnosed almost 2 years ago, I dropped everything and she was the priority. I was defined by her. I have no regrets and would do it all over again for her in a heartbeat. Now though, she isn't here with us and "just like that" things have completely changed.

A collection of Kaitlyn's favorite things at the service

Chip is back in the office at work. I am home with my mom and Cole. My mom and Chip's mom have been taking care of Cole so much that it's been really difficult seeing how much I have missed out on. I know that I did the right thing by being with Kaitlyn but it's hard when someone else has to tell you about what your child normally does or doesn't do. It's getting easier every day as I take care of him and take him out on play dates.

Egg hunt at our friends' house

Having so much fun playing with other kids

Playing house with Molly Belle

One thing that has been really great is his excitement in seeing other kids and being around them. Everyone in our family has had to make sacrifices over the past 2 years, even Cole. He couldn't go to play dates or even church because if he got sick, Kaitlyn would get sick. The risk wasn't worth the benefit. Now we are trying to expose him to lots of activities and someone even donated a 7-week Music Together Class for him on Saturdays! He LOVES music and we are really looking forward to it.

Pushing cousin Daniel

There is definitely a certain level of guilt when I feel happy about things, but I know that it will get better with time.

Easter

Cole and cousin Daniel

I've been taking really long walks in the neighborhood lately, which has helped to clear my mind and process things.

We are so blessed to have Cole, I can't imagine what it would be like without him. He is my little prince charming and keeps me busy and gives me purpose and strength. 

My prince charming!

He's just too cute not to kiss!

Molly Belle agreed with me!

Easter was really tough for me. We went and visited Kaitlyn's grave. We have rose bushes in front of our house and there was one lone red rose. I knew I had to take it to her. I kept thinking that there must be a huge celebration in heaven that day and Kaitlyn was probably dancing and singing! That made me really happy.

We then went to Chip's parents' house for Easter lunch and an egg hunt with family. When we first moved to NC, we lived in their house for about 6 months before we moved into our new home. Kaitlyn was at her peak, developmentally, when we lived with them so there are A LOT of memories in their house. Good ones of her laughing and playing and me being pregnant with Cole and us taking pictures of my growing belly together. Again, bittersweet. I had a knot in my stomach almost the whole time remembering her in her high chair as I helped get lunch ready with Chip's mom.

In Kaitlyn's room at Jane and Roger's house

My Cole-Belly was getting bigger!

I still haven't been upstairs where our rooms were. It's odd. You would think I'd be more upset in our house than theirs but theirs is where SHE was herself and happy. Where the disease hadn't taken over yet.

Yes that is baby food on her foot!

She LOVED french fries (mostly licking the salt off them)

1st birthday party at Jane and Roger's house

Wow... this is how I will always remember her

Sitting!

I miss her and tell her I love her every day, multiple times a day. Each day is a new day and honestly, I don't know how I will feel on any given day. Some days I feel numb, some days I feel okay. It is much different than I ever expected.

Surrounded by Luck!

After Kaitlyn was buried, I visited her grave the next day, by myself, and found this! How cool!

4 leaf clover and Kaitlyn's grave site in the background

I ended up framing the clover and it sits right next to Kaitlyn's photo on my bedside table.

Doesn't the straw look like a heart around Kaitlyn and her flowers?

A week later, Chip and I went again to the cemetery and funeral home to design Kaitlyn's burial marker. After our meeting, we took a stroll across to the cemetery to visit our sweet girl. I talked to Kaitlyn and told her that I love her and miss her but am happy that she is free from her body now and to not worry about us. I then walked over to Baby Land (which still had the pretty pink bows on the gate posts!) and looked down and found this! This clover was much bigger than the first one. It definitely is a special place. Perfect for Kaitlyn.

2nd 4-leaf clover!

It has been a difficult transition for all of us. Chip went back to work on Monday and is very busy and now I am trying to adapt to our new life without Kaitlyn. For many months, I didn't leave the house, let alone the room because I was so afraid of what might happen to Kaitlyn. Now I can go anywhere and take care of Cole whenever I want and it makes me feel a little sick because she's gone and not here anymore. You would think it would be easy with only 1 child, but it's been really difficult trying to become a "normal" family again.

Love the dogwoods and there are even wind chimes over by the trees. Simply perfect.

I plan on continuing this blog. I'm NOT going to stop writing so please keep checking in and subscribe to the automatic email. I may not write as often but I will still be going strong to help others and keep Kaitlyn's voice alive.

Really pretty and peaceful! There is an arbor at the top of the hill.

 I do plan on writing a book about NPA with the help of NPA experts, like Dr. Melissa Wasserstein, about the medical facts of NPA and helping families and healthcare professionals understand more thoroughly what this disease is and does to the body. The second large component of the book is "what to expect" and "what happened". Stories and lessons learned from parents who have had or have a child with NPA. I don't mean to not include the other types of NP. Hopefully one day, I will be able to work on the other types too. NPA is so rare that these families really need something useful and practical to help them understand better and not feel so alone.

Can you find the butterflies?

Thank you to everyone who has sent us flowers, cards, donations, emails, food, etc. It has meant so much to us! I apologize in advance if I don't respond back to emails as quickly. Things are kinda hectic around here trying to get used to everything and having over 1,000 unread emails is pretty daunting, but in a good way because I know that Kaitlyn touched so many people's hearts!

Please continue to pray for our other NPA friends, Wylder, Riley, Trek and Jacob. Here are their blogs:

Wylder James (Type A)
Riley Robbins (Type A)
Jacob Brooks (Type A/B)
Trek Atlas (Type A)

Baby Land

I don't even know where to begin.... the service for Kaitlyn was perfect. Everything was perfect, just how it should be for such an amazing girl. Kaitlyn was a beautiful angel in the dress that we made for her. We used my wedding dress and created the perfect dress for her. There were light pink mini-roses and other flowers everywhere and butterflies sparkling in bouquets. There were also pink bows with mini-roses on the ends of each pew. I can't begin to thank everyone who came for the visitation and service. It meant so much to me and my family that you would come and honor our daughter with us.

Ribbons and flowers from the pews

The burial was the following morning with family only. It too, was perfect. Her white casket with the beautiful flowers and butterflies shimmered and glinted in the sunlight. The day was absolutely beautiful with a big blue sky. Afterwards, we had everyone stand in a circle in the grass. We had a heart shaped basket with 3 white doves. Chip. Cole and I released them, representing Kaitlyn's spirit rising to the heavens. Cole had a big smile when they were released and the 3 doves flew by a second time before heading home. It was beautiful. It's really neat, the doves live on a farm in the area and fly back to their home when they are released. We checked and all 3 made it home safely! :-)

Beautiful Burial

After the memorial service, we had asked to have the pew bows/roses lined on the fence that surrounds "Baby Land". This is a section across from where Kaitlyn is buried that is dedicated to babies who lived very, very short lives or didn't at all.

Baby Land fence

On the day of the burial, the fence to "Baby Land" was lined with the pink bows and flowers, just as we had asked. After the burial service, I walked over to the area and thought it would be nice to honor all the babies by putting a pink mini-rose on each of the grave markers. We pulled the mini-roses out of the ribbons and set them out. We had the EXACT number of flowers to put on each grave. I went back and counted... 172. Coincidence? After that, I don't believe in coincidences! :-)  

Our dapper young man!

After the burial, we had all of the flower arrangements delivered to our house and displayed on our porch for all of our neighbors to see. They have all been so supportive and the flowers are just stunning.

The porch

I always imagined that when Kaitlyn died, that I would be so overwhelmed with grief that I'd be in a looney bin... seriously. That wasn't the case though. For the past week I have been fairly okay. I think that my happiness for her to be free from her body is so much more than the sadness in my heart right now. Don't get me wrong, I've had my moments and will continue to have random times when I cry and miss her but it is completely different than what I had expected.

The hard part now is adjusting to a new life...

A Celebration of Kaitlyn's Life

Eulogy for Our Sweet Girl
Kaitlyn Kay Bourgeault
July 1st, 2009 - March 22nd, 2012

My Kaitlyn ring- her birthstone (ruby) with a butterfly in diamonds, I wear it on my right hand now and will forever.

Black = Deanna speaking

Blue =  Chip speaking

 

(Deanna)

The day that Kaitlyn was born was the happiest day of my life. She was truly an answer to prayer and a gift from God. I had no clue that my little 7 lb, 3 oz baby girl would go on to make such a significant impact on the hearts and lives of others.

Everywhere we went she got attention. Those big blue eyes, sweet dimpled smile, ringlets upon ringlets and giggles were all everyone could talk about when they met her.  

I believe that God created her perfectly, ringlets and all, for her purpose here on Earth- to get people’s attention!

Kaitlyn's dress was created and made from my wedding dress. The front lower half is the train from my dress.

(Chip)

Psalm 139:13-16

For you created my inmost being;

you knit me together in my mother’s womb.

I praise you because I am fearfully and wonderfully made;

your works are wonderful,

I know that full well.

My frame was not hidden from you

when I was made in the secret place.

When I was woven together in the depths of the earth,

your eyes saw my unformed body.

All the days ordained for me

were written in your book

before one of them came to be. 

(Deanna)

Kaitlyn loved having books read to her. We would read Peek-a-boo books, Dr. Seuss, Children’s bible stories and poems to Kaitlyn all the time. There are a few poems in this Bedtime Prayers book that I would read to Kaitlyn and talk with her about her purpose. Here are the ones that always stood out the most to us.

          (Chip)

          The Shepherd Chooses
          The Shepherd Plans
          The Shepherd Shines

(Deanna)

We could have stayed silent and not shared Kaitlyn’s life with anyone and continued to be depressed and angry, because I was for quite some time, and we could have continued to ask... Why?

Light pink roses and mini roses and butterflies, what could be more perfect than that?!

I don’t believe that God caused Kaitlyn to have Niemann-Pick Disease, but I do believe that he wanted us to trust in Him and turn our situation into something good- to glorify His name and bring others closer to Him. 

(Chip)

In the book of James, he says “Dear brothers and sisters, whenever trouble comes your way, let it be an opportunity for joy. For when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be strong in character and ready for anything.”

(Deanna)

When I started Kaitlyn’s Korner, it was right before Kaitlyn’s G-tube surgery and it was mainly to keep family and friends informed of how things were going. I had no clue it would become what it is now. By giving her a voice, she has changed more lives than I know. What I do know is that as of last night I had 812 unread emails- ALL about Kaitlyn I’m sure! We’d like to share just a few lines from some of the messages we have received over the past year that really show just how much she has made a difference.

(We read the following back and forth)

"Kaitlyn has had a profound impact on me not only with my direct family but how I  plan to carry out the rest of my life. In honor of Kaitlyn, I am going to be volunteering at my local children's hospital."

"I do believe in God, but never really have trusted in Him nor felt like he had a plan for me-or anyone until your story, You truly changed my outlook on life, God, my daughter, everything"

"Because of Kaitlyn, I strive to love on my two daughters more, and to TRULY cherish and dote on them."

"I promise to be a better mommy to my sweet angels. I promise to never take this life for granted, to hug them as often as I an and tell them how much I love them every, single day. You have helped me realize how precious life is and how important it is to love one another fully and completely."

"I had become bitter and resentful of a lot of things over the last several years. I didn't know how to accept things I couldn't change, I didn't like people, I started to despise my life, to include most people who had a part in it. Then, last week, the post about Kaitlyn. Why would I read it? Why would it move me to tears? Why did I write to you? I believe that God is speaking to me through Kaitlyn... talking to me and teaching me that there are FAR more important things. Letting me know what is and isn't important. Proving to me that what I thought were hard times and obstacles were really nothing at all."

"What I find remarkable is that I have opened dialogue over the last few days with God. Asking about Kailtyn, why these things happen, etc. So my comment earlier about her being my Guardian Angel and her saving me... well, that wasn't just talk. Your young daughter took an almost 40-year old grown man from being afraid to talk to God to being a chatterbox with the very same God!"

"I can only hope that I will make in 80 years the impact that Kaitlyn has made in her life."

"Kaitlyn has taught me more in these past months about life than anyone in 35 years."

"Your family's story and the example you have set through this blog have given me a whole new perspective for my daughter- one of living for each day, appreciating the moment, and leaving the "what ifs" at the feet of our Lord."

"I stumbled upon your blog by complete accident. I am 25 and from Scotland... the other side of the world. I believe I was meant to come across this blog for a reason. I've just undergone major surgery on my leg after a car accident that nearly took my life. I have been feeling down and depressed about it all & think I was mean to see this page to put things into perspective. I feel ashamed that I have been feeling hard done by and felt sorry for myself when your little girl shows such strength every day and you guys are beyond strong."

So glad we included the butterflies

"My life is literally changed for the better by your sweet, courageous, beautiful daughter. You see, before a friend posted your blog on Facebook, I wasn't sure if I believed in God. I wanted very much to believe, but I had trouble surrendering myself fully to the notion. Kaitlyn's story has strengthened and solidified my belief in God. I know in my heart that God sent her here to be His messenger that He is real.... I hope you'll whisper heartfelt thanks to Kaitlyn for changing my life, for making me a better mom and to my sweet son and for proving to me the presence of God in my life."
 

"I know you said she has only ever spoken four words but believe me she has spoken more -- She has said to me "wake up and be the person you want to be. Start now and don't wait. " She has challenged my to be a better person"

(Deanna)

To say that I am proud to be her mother is an understatement. I am honored and blessed beyond understanding to have been given such a wonderful daughter and opportunity to be a part of her life. An opportunity to show that although we endured the unimaginable, Kaitlyn was able to leave our world a better place than it was before. 

Through her blog, the world of technology, and our wonderful family and friends who have shared Kaitlyn’s story, she has reached people across the world- including countries like Canada, the United Kingdom, Germany, Australia, Japan, Spain, Finland, and Saudi Arabia. 

How amazing is that?! One child, who spoke only 4 words, “Mama”, “Dada” and “All Done”) spoke into the hearts of thousands. THAT is a miracle and an example of how trusting in God and having faith during the most difficult of times can make a profound impact.

(Chip)

I think people have been so touched by Kaitlyn because she spoke in a language far greater than words, God’s language….love.  That love was like a beacon of light that drew anyone who saw it nearer and made them want to share it with others.   When I reflect on what the measure of a full life is, I think it is one that made a difference, served a purpose, touched others, and shared God’s love.  I would have wished her to stay longer, but I have no doubt that by my measure, God gave my sweet Kaitlyn one very full life.  

The flowers were perfect

(Deanna)

To Kaitlyn, my sweet girl, I will never forget you. You are my hero and inspiration. You have changed my life forever. In second Corinthians, it says, “God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.” I promise to continue to share your life and comfort other families during difficult times. Kaitlyn, I am so proud of you and all that you were, all that you are now and all that you have done.  You will forever be my sweet girl. I love you.

(Chip)

To Kaitlyn, here is a poem I wrote for you:
My beautiful girl you were so perfect and right
Bright blue eyes, curly locks, and big bows…. oh you were always a sight
Your time was too short, but you fought a tough fight
As your Daddy I’m thankful and proud to have been so blessed
I will always hold dear the memories and the feel of you against my chest
You touched the world with a your spirit shining bright
What an example you were of His amazing light
I wish you could stay, I want you to know
But with a heavy heart and tears in my eyes I let you go
In heaven, the pain and suffering no longer have their strangle
There now with God, you’ll be daddy’s angel.
I love you Kaitlyn.

   

Recognition of Our Sweet Girl

This will be in the Charlotte Observer newspaper tomorrow (Saturday)

Kaitlyn Kay Bourgeault

July 1^st, 2009 – March 22^nd, 2012

Indian Trail, NC – Kaitlyn Kay Bourgeault gained her wings and joined God in Heaven on March 22^nd, 2012. She was 2 years, 8 ½ months old. She greatly impacted many hearts and lives during her short stay here on Earth. She was one of five in the US with Niemann-Pick Disease, Type A. Although the disease limited her body, her life knew no bounds on the impact it could make on others. Her voice was shared with the world through her blog, Kaitlyn’s Korner at http://niemannpick.blogspot.com. She will always be remembered for her big blue eyes, curly ringlets held up in girly bows and her beautiful smile. Her best days will now be spent as an angel.

Kaitlyn will be incredibly missed. There will always be a piece missing in our family, but knowing how greatly she impacted others hearts and changed lives makes us proud and blessed for each day we got to spend with her and to be her parents. We know that she will be with us in our hearts forever and waiting to meet us again in the future.

Kaitlyn is survived by her parents; Chip & Deanna (Landis) Bourgeault. Her younger brother; Cole. Her paternal grandparents; Roger & Jane (Souliere) Bourgeault of Charlotte, NC. Her maternal grandparents; Janet (Haas) Glanville of Indian Trail, NC & Steve and Dot (Weathers) Landis of Fuquay-Varina, NC. Aunts and Uncles; Jessica (Landis) and Gavin Korth, Eric and Demelyn (Nartea) Bourgeault, Joshua and Jessica (Patterson) Landis, & Chris Hyner. Kaitlyn is also survived by her beloved cousins, Makayla Day, Dane Korth and Daniel Bourgeault; as well as many loving extended family members.

Visitation hours, to which family and friends are invited, will be held Sunday, March 25th from 4:00 p.m. - 6:00 p.m. at Heritage Funeral Home- Forest Lawn East, 3700 Forest Lawn Drive, Matthews, NC 28104.

Memorial service, to which family, friends and neighbors are invited, will also be held on Sunday, March 25^th at 6:30 p.m. at Heritage Funeral Home- Forest Lawn East, Matthews.

A private burial for family only will be held on the following day.

The family requests, in lieu of flowers, memorial contributions be made in Kaitlyn’s name to The National Niemann-Pick Disease Foundation (for NPD, Type A) at NNPDF, P.O. Box 310, Fort Atkinson, WI 53538 or www.nnpdf.org.

Out of town guests can ask for a Bereavement Rate at Courtyard Marriott, 11425 E. Independence Blvd., Matthews, NC 28106. 
(704) 846-4466
www.marriott.com/cltcm

A Farewell to Our Princess

Services for Kaitlyn will be held as following:

Sunday, March 25th, 2012
4:00pm - 6:00pm- Visitation
For family and friends
(open casket)

6:30pm- Memorial Service
For family, friends and neighbors
(closed casket)

Monday, March 26th, 2012 
9:00am- Private graveside burial
Family only

Heritage Funeral Home- Forest Lawn East
3700 Forest Lawn Drive
Matthews, NC 28104
(704) 846-1068


In lieu of flowers, please consider donating to the Niemann-Pick Disease Foundation in memory of Kaitlyn Bourgeault, Type A. Click here to donate.

All Done

Our sweet girl is now an angel. She passed away today, March 22nd, 2012 at 12:34pm.

Chip and I were with Stephanie, RN with hospice going through our normal routine check-up on how things are going and discussing medications, etc. She was asleep with us right by her. All of a sudden she just stopped breathing. No gasping, no crying, nothing. It was the best way for her to move on. I couldn't have asked for anything better for Kaitlyn.

We held her, said prayers, told her how much we love her and how proud we are of her and laid next to her until the funeral home arrived to pick her up. Chip carried her in a pink blanket with the blue and white bow still on her head to their van.

We are thankful that Kaitlyn is free from her body and can do all the things now that she couldn't do here on Earth. We are devastated by her loss but we know that she made a huge impact on many people's hearts and lives.

She will be taken to Levine Children's Hospital to have small samples taken from her body to be sent up to the Niemann-Pick Disease Center at Mount Sinai School of Medicine to further research on Niemann-Pick Disease, Type A.

We will post details of the visitation and service once they are arranged.

In lieu of flowers, please donate to the Niemann-Pick Disease Foundation in memory of Kaitlyn Bourgeault, Type A. Click here to donate.

A True Sleeping Beauty

Today is the 8th day that we have held Kaitlyn's feedings. It's really hard to believe. She has lost a lot of weight in her belly, which I would think would make her feel more comfortable since her belly was so large and tight due to her enlarged liver and spleen. There is more room in there now which I would think would mean less pressure. Just my own thoughts though.

Kaitlyn's heart rate went up and is now a little lower. Her oxygen concentration is still pretty low but not as low as it was. This morning we couldn't get the pulse/ox machine to read on her toe. Stephanie, RN said that this could happen when her circulation gets less efficient and would result in a very weak, possibly unreadable pulse. We have it on her thumb now and it is working fine. It's currently reading is 84 O2 and 113 heart rate.







 








Yesterday we started giving her morphine more often (every 2 hours) and added Valium (diazepam) every 4 hours. She has become more and more unresponsive over the past few days. This morning we checked her pupils and they don't react at all with a pen light. She could possibly be in a coma. She's still breathing and "stable" for now.

We are going to cut back a little on her meds, as far as how often we are giving to her to see if makes any difference.


As a parent, you so desperately want more time with your child but at the same time if she is asleep, she is probably not feeling any pain and is probably half-way to heaven already. Who are we to change that? The end result will be the same no matter what we do. We just have to have faith and trust that God will guide us through this.

A wee bit of heaven 

drifted down from above.

A handful of happiness 

a heart full of love.

The mystery of life 

so sacred and sweet,

The giver of joy 

so deep and complete.

Precious and priceless, 

so loveable too -

The world's sweetest miracle, 
Kaitlyn, is you.

Fighter

Kaitlyn is one tough cookie! Her heart was racing all night and her oxygen was low (in the 70s). To put things into perspective, if you took your child to the doctor and their oxygen concentration was normal, it would be around 97-100%, if you took your child to the doctor and it was below 92%, they would probably send you to the hospital if it didn't come up on its own or with a breathing treatment. Kaitlyn's is in the 60s/70s. Her body is fighting to stay alive. With a heart rate that high, you can imagine that it is tough to fall asleep.

She is a little bit more swollen today that she had been the last time Stephanie, RN with hospice had seen her. This could be because we stopped the Lasix for a day so we started it back up. It could be her body just can't handle ANY liquids, even the water that is used to flush her medicines through her G-tube.

We were also advised to discontinue the following medications: Lactulose, Neurontin and Keppra. That would leave her with Lasix, Klonopin, Valium, and Morphine. As well as her pain patches on her back and the scopalomine patch.

She just got a bath and that typically calms her down and makes her more relaxed. Right now her O2 is 74 and her heart rate is at 150. Hopefully she can get some rest and be at peace when the time comes.

We know that our body- the tent we live in here on earth- will be destroyed. But when that happens, God will have a house for us. It will not be a house made by human hands; instead, it will be a home in heaven that will last forever. 
2 Corinthians 5:1

    

Trust

Father, we believe that when we see you, any suffering that we endured on the face of this earth will be worth it. Help us to understand. And when we cannot understand, help us to trust.











Shortly after my last post, Kaitlyn's heart rate got really high (170s) and her oxygen was low (70s). Her toes are purple and her hands and feet are cold. She is struggling to breathe. We are by her side and loving on her as much as we can. 

Please keep her in your prayers. Pray for her struggles to ease and for her to find comfort and know that we all love her.