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. 

 

Live in the Moment

Kaitlyn is about the same as she was yesterday. We are blessed with another precious day with her!

Love Birthday

Today is bittersweet. Deanna celebrates her birthday and deserves to feel happy and focus on herself, but with all the weight of what is going on with Kaitlyn it is difficult to follow the adage of “Happy Birthday” since the struggle we see is anything but happy and the focus must be on Kaitlyn. If it can’t be a happy birthday then I say let’s make it a “Love Birthday” filled with memories of love between a mother and her precious daughter. So to Deanna I say I hope you have a great “Love Birthday” and that you feel more love today than ever before.

What better gift than to be able to hold her baby girl

A beautiful bond

Kaitlyn had a rough night last night.  Her breathing was very congested no matter which side we turned her on. We gave her morphine every two hours to try and help her, but she still seemed to be awake quite a bit. She tries to cough, but it comes out like a hard breath and sounds just horrible.  When I hear her I just want to cough for her. Her eyes are also very yellow again and the fluid is still present in her abdomen even having gone 6 days now without food. We want nothing more than to feed her, but we know that if we do it will make the fluid and lung congestion even worse. It’s a horrible place to be, but we have always listened to Kaitlyn and we feel her body is telling us it can’t handle the food.

Snuggled with her glow worm

Hospice came this morning and checked her over. She seemed to think Kailtyn was very close, possibly within 24 hours. Hospice, Deanna, and I have felt that way before and even shared it openly on here, but we all know this is Kaitlyn and she is a tough girl and doesn’t follow “normal” so we will just take it one day at a time like we have been. I must admit though, I think her fight is wearing out. She sleeps most all of the day and her hands and feet are often cold while her body runs hot. Her breathing seems more labored, her O2 often settles in the low 80’s, and her congestion/cough is constant and difficult to hear and watch. 

Pretty in her big white bow

We certainly love her beyond what words can even express, but part of me wants her to not have to struggle and fight anymore. I know what is waiting for her when she decides its time and she deserves that far more than she deserves the struggle that awaits her here every day. 

Wrapped in love

As always please continue to pray for comfort for Kaitlyn and if you would like, join me in wishing Deanna a “Love Birthday” so she knows how loved she is.

Endurance

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.
James 1:2-4

I'm still here!

I still can't believe that Kaitlyn is still here. She is simply amazing. I know I say that all the time but it's the truth. She must have more people she wants to get to know her. :-)

FLASHBACK- Kaitlyn exactly 2 years ago!

Good news, Kaitlyn went through 3 diapers last night! Her average has been one a day. Hopefully this is a sign that the Lasix is starting to work. Her belly size has also decreased by an inch, but she's also not receiving any food at all so that could be it too.

There is a little angel in the middle of the bow

She has only had 3 oz of formula (that's less than 1/2 a cup) once in the past 4 days, we are now on our 5th day without food. She is still getting her meds and gets a little water to flush her G-tube. She has been resting well but is still swollen in her belly, legs and feet. Her lungs are still fluidy sounding but not as bad as yesterday.

Trying to keep her as comfy and snug as possible

We are trying our best to enjoy each day with her, despite knowing that at any time she could be ready to go.

Here is a video of Kaitlyn's breathing sounds yesterday. She was pretty congested and her oxygen concentrations dipping to 80 at times, even on full oxygen.

Happy St. Patty's Day!

Happy St. Patty's Day from our Sweet Little Good Luck Charmer!

Kaitlyn went for 3 full days without any food/formula so last night we gave her 3oz over the entire night, which is very, very slow. We also got up every 3 hours to give her morphine throughout the night to make sure she was comfortable. It also helps with her breathing.

Today she sounds very congested in her throat and lungs. She is comfortable and asleep but her breathing sounds gunky. I've done breathing treatments, started an antibiotic and deep suctioned her today with the hopes of getting some of the fluid out. We are still doing Lasix today and she had a big wet diaper earlier! Yay! She hasn't had any more wet diapers than that one so it's still not looking good.

Overall, she is hanging in there. She's had breathing changes with the congestion and still not responding as we would like with the Lasix. She still has swelling and we are holding her feedings today. When I deep suctioned her earlier (tiny tube up the nose, down the throat, etc. not pleasant at all) she barely squirmed. The morphine is definitely helping her to stay relaxed and asleep, which is good. We have noticed though that when she is laying on her left side, her oxygen concentration drops really fast (to 80) but is much better on the right side (90s). This is probably due to the large size of her liver pushing on her lungs and blood vessels. We still have to change her position often though due to the swelling and circulation problems so it's a constant up/down with her pulse/ox numbers.

Cole and Cousin Dane playing in the truck

Today we had another birthday party, an early one for me! It was great to have most of our family here for lunch and ice cream cake. It's nice to have something to celebrate and take your mind off things for a little while.

Ice Cream Cake!

Made a wish!

My Lucky Boy

Ahhhh... I'm being chased!

Thank you to everyone for the messages and shares on Facebook and email. We have such a great support system out there- all of you guys!!!

Sleeping Beauty

Kaitlyn is writing her own book when it comes to how she is doing... You never know what to expect with her! She still has swelling but her heart rate has gone down and her oxygen is a little better.

She is still not responding well to the Lasix. We have been holding feeds, which is really mentally hard to do as a parent, but knowing that it would only cause the swelling to get worse makes it the right thing to do.

We are giving her morphine every 3 hours and she has been asleep pretty much all day. She will open her eyes for a minute and then go back to sleep. As far as we can tell, we are managing her pain.

We did have a little fun, even while Kaitlyn was asleep. Aunt Jess came down to see us and we celebrated my Mom's (Gigi's) birthday upstairs with Kaitlyn.

Cole needed to get some energy out so he got to go to the park in our neighborhood!

Needing to get outside

He is always so animated!

 

Wow that's high!

Praise You In This Storm

No matter how hard I try, I can never get close enough to her!

Unfortunately, Kaitlyn is still not responding to the Lasix (diuretic). She hasn't had any wet diapers today, despite a 2nd dose of Lasix this morning. Her heart rate is normally in the 90s/100s and she is now in the 140s/150s. Her hands and feet are ice cold while she has a fever over 102. These are all not good signs. We have had to continually lower the alarm threshold so that the alarm isn't going off all the time. Right now we have the alarm set to go off at 80 for oxygen and 155 for heart rate. It's gone off twice in the past hour for both reasons. 

We will continue to make her comfortable for as long as she is with us and thank God for every precious moment we have with her. She is truly amazing and we are blessed to be her parents.

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth