So much is happening that it's hard to keep up! Tonight there is a Prayer Service with lots of music and photos at Mount Vernon Baptist Church in Glen Allen, VA (my hometown). Everyone is welcome and it starts at 7pm. If you can't make it or live elsewhere, please consider saying a prayer of peace and comfort for Kaitlyn during this difficult time for her.
Today with her sweet pea
The pain that she was experiencing has seemed to get a bit better. She has the pain patch on her shoulder and we are giving her morphine every 3 hours and the past two nights she has slept all the way through the night! We are still getting up every 3 hours to give her the medicine but it is well worth it for her not to be in pain and for her to get good rest.
Today though she is having trouble with her breathing. It is becoming more difficult for her to maintain a good oxygen saturation (mid-upper 90s). She has been in the 80s and low 90s most of the day. She is over the maximum limit for how much oxygen she should be on at a continuous rate so we can't go any higher for extended periods of time. I tried an albuterol breathing treatment but we aren't sure if it helped much.
Right now she is propped up on some pillows. We are hoping that this will take some pressure off of her lungs and let her breathe a little easier.
Propped up on pillows
We wish we could be at the Prayer Service tonight but we can't leave Kaitlyn's side. She needs us. Plus we live in Indian Trail, NC. The last time Kaitlyn was in a car seat was months ago! She can't tolerate being in an upright position since she will choke on her saliva so we are home bound for now.
Cole has discovered a love for kickball with Daddy!
I just want to thank everyone in advance for everything they have done to make the Prayer Service for Kaitlyn a reality. The goodness in others, near and far, is incredible. We can never express in words how thankful we are for all of you.
INDIAN TRAIL, N.C. – With every breath, 2-year-old Kaitlyn Borgeault fights for her life. Her
mother, Deanna, reads her familiar books for comfort. A rare and fatal
illness attacking Kaitlyn's body will inevitably take her life.
"In just a short couple of minutes someone tells you your precious little girl is going to die," said Deanna Bourgeault.
Last
April, Kaitlyn was diagnosed with Niemann-Pick Disease Type A. She
lacks an enzyme that breaks down fatty substances found in every cell in
the body. Her liver and spleen are swollen. Her health and eyesight are fading. Doctors say she won't survive much longer.
"She requires around the clock attention. It's been a steady decline of her abilities," said Chip Bourgeault, Kaitlyn's father. Kaitlyn is one of only five currently known cases in the U.S. She eats and takes in more than a dozen daily doses of medicine by way of a g-tube inserted into her stomach.
"The day before we found out about Kaitlyn's diagnosis, we found out we were pregnant with our son Cole," said Deanna. Like
their parents, Kaitlyn's younger brother, Cole, is also a carrier of
the Niemann-Pick gene, although, doctors say he doesn't have the
disease. The odds of him having it are one in a million.
Emotionally
drained, Deanna started an online blog to update family and friends and
to raise awareness of the illness that's still obscure to doctors. Then,
Deanna said the unexpected happened, "We started receiving all these
different messages from people about how it's changed their
perspective." Messages from strangers poured in including food from neighbors and donations for a mountain of medical bills.
The story of a little girl, who has only ever spoken four words, began to speak to thousands.
"When I started seeing the response I realized, this is why Kaitlyn is here," she said. As
her days become shorter, the Bourgeault's faith grows stronger. A faith,
they say, will carry them through the toughest battle they have ever
faced.
"Whether it's for a moment that it touches their heart
while they're reading the blog or whether it's for a day, and they hug
their children a little tighter and are more thankful that their
children are healthy, or whether it's for a lifetime, she has made a
difference," she said.
Monday January 30th (this Monday)
from 7:00pm- 8:00pm
Mount Vernon Baptist Church
11220 Nuckols Road
Glen Allen, VA 23060
A dear friend from high school, Kristin Gainous-Anderson, has created
and organized a prayer service for Kaitlyn in my hometown, just outside
of Richmond, VA. We invite anyone and everyone to participate, whether
you can actually come to the event or pray for Kaitlyn from afar.
If you have any questions or want to help out, please feel free to contact Kristin through email at hpd9114me@gmail.com
Please
come join our extended family, friends and supporters as they lift Kaitlyn up during worship
through music and prayer. The prayer service will be in the main
sanctuary of Mount Vernon Baptist Church.
An offering will be collected with all the
monies going to Kaitlyn's Fund. Everyone
is welcome. Children are welcome, however please note that they are unable to provide child care.
Due to the
severity of Kaitlyn's condition, we will not be present but our hearts
will definitely be there and we will be sending messages and photos to
be included in the service.
Kaitlyn has had a rough fews nights. During the day she has been sleeping really well and is so peaceful. At night she has been having a lot of pain that has required morphine and the fentanyl patch. Even with those meds, she still has pain and has been crying out. It's mainly between 3am and 6am. We aren't quite sure why but we are trying our best to figure it out and help her.
Snuggle Buddy
Yesterday we noticed that inside corners of her eyes looked a little yellow and her skin had a yellowish tinge to it. All pointing toward jaundice and possible liver failure. We know that her time is limited and we will do whatever it takes to make her feel at peace.
Of course, Cole loves the monkey too!
Thank you to those of you who have brought us meals and supported us. Something that really touched my heart was a package on our front door the other day from 4th and 5th grade students who had just learned about lysosomes in science class. Their teacher lives in our neighborhood and told them all about Kaitlyn and how Niemann-Pick disease effects lysosomes. In the package were drawings and letters to Kaitlyn from her class. The things these kids wrote were so sweet and thoughtful. It really touched our hearts.
Kaitlyn has had some unfinished business that we weren't aware of... apparently she wanted to make sure MORE people learned about Niemann-Pick Disease and her story across North Carolina. A friend of ours made contact with Time Warner Cable News 14 Carolina and we were interviewed on Thursday at our home.
After the interviews with the News 14 Carolina Crew
The story will be aired on TWC News 14 Carolina at 5pm today (Saturday) and looped throughout the evening. There will be a link to the story so as soon as we get the link, we will share it with everyone. Kaitlyn never ceases to amaze me at what she is capable of. Although she can't speak anymore and has only ever said 4 words ("mama", "dada", and "all done"), she has inspired us to speak for her and create something beautiful out of a devastating situation. The number of people she has and will continue to touch is remarkable.
Kaitlyn is amazing. She is here with us and resting quite a bit. Her congestion isn't as bad. We aren't suctioning out as much gunk as we were. Her heart rate is still high most of the time and she is having difficulty holding her oxygen concentration. We had to go up on her oxygen a little although we know that it will continue to get worse.
She's awake! At least for a minute. :-)
It seems that her "wake" time is now from 3am - 6am so we are trying to adjust to her new schedule. You may thing geez 3am - 6am- ugh! But for us, any time she is awake we will cherish, no matter what time of day or night it is. She sleeps so much during the day that being able to interact with her in the slightest bit at 4 in the morning is just fine with us!
Here is our request:
Our dear friend Faith, of Images by Faith, who has taken so many wonderful photographs of Kaitlyn and Cole over the past year has entered them into a fundraising "cutest kid" contest. The contest is the primary fund raising event for Now I Lay Me Down to
Sleep (NILMDTS). Proceeds from votes benefit NILMDTS, a 501(c)(3)
non-profit whose mission is to provide professional portrait sessions
to families suffering an early infant loss at no cost to the family in
order to honor their child’s legacy and memory.
Each vote is $1 and you can enter multiple votes at the same time. It would mean so much to us to honor Kaitlyn in this way. The contest ends in March and Finalists/Awards are given in April. Knowing how close Kaitlyn is to the end of life, even if she isn't present at the award ceremony, it would be such an honor to have her be a finalist or winner, given all the beauty she has given to this world, both inside and out. Her beauty and what she has already done with her life is amazing and the Now I Lay Me Down to Sleep is the most perfect way to honor her beauty. The mission of the foundation is amazing and this would means so much to us. Please vote for Kaitlyn and Cole and spread the word to others too. :-)
Cole is also in the contest too! Of course- he is a cutie!!!! Please vote. This really gives us something to take our minds off of our everyday reality and do something fun and special for our kids. Thanks in advance for all of your support. We are still hanging in there. :)
Today has been a really tough day for us. Kaitlyn is doing okay. She is resting but with a high heart rate (130s/140s) and fever. She has been waking up every night around 3am coughing and/or irritable. We have been giving her morphine only as needed, such as last night.
Still sleeping most of the day
We have been mentally "preparing" ourselves for Kaitlyn's passing. I know that there is no way to truly "prepare" yourself (I know we will be beyond devastated) but we have accepted the fact that it is going to happen.
Over the past few weeks, we have noticed that Kaitlyn has been less interested in her books and videos and doesn't engage/focus well as she used to. We were told that at the end of life often this happens. That there could be a disinterest in what she normally likes. What we didn't consider was that she may be losing her sight.
This morning I held a camera up to her eye (with the flash on) and took a picture. She didn't even blink. I waved in front of her face- nothing. I opened all the blinds to let in lots of sunlight and she didn't even squint in the least bit.
Didn't even blink or react to the camera
It's crazy to say but I was/am not prepared for this. I never imagined that she could go blind. It hasn't been confirmed but it's pretty obvious that if she CAN see, it's very little. My heart is broken for her. I am so worried that she is scared or confused. It seems ridiculous that this would really bother me given that she could pass away any day. Knowing that when she is ready to go, if I am holding her in my arms, she won't be able to see me just crushes my heart.
I know that God made Kaitlyn the way he did for a reason. To touch people's heart and lives with her life and to learn to trust fully in God even when we don't always understand why.
I can't imagine what she is going through but I will comfort her and talk and hold her so she can feel my love, even if she can't "see" it. Please pray for her comfort and peace as her body changes as the disease progresses.
You can see how big her liver is (the protruding part to the left of her G-tube)
Kaitlyn and Cole are the Apples of my Eye. Here is a video from today that made me smile. Among the heart wrenching realization that Kaitlyn is losing her vision, Cole brings so much blessing into our lives and has a gift for knowing exactly when we need a smile.
Our sweet girl is hanging in there. She has slept most of the entire weekend.
Sweet pea with her sweet pea
The hospice doctor and nurses have been out to check on Kaitlyn and she has been put on 2 antibiotics (azithromycin and a rocephin shot) in case of any infection. She still has had fever of varying degrees (101-103) this weekend and has been coughing a lot when she is awake. When she is sleeping, her breathing is pretty good but when she wakes up, it seems like she is using all of her energy to breathe.
With Pepere
She still has a pain patch but we didn't feel like she needed any morphine yesterday or today (so far). We are feeding her through her G-tube but at a much slower rate than normal. So far she is tolerating it really well. The blood shot eyes are now clear and she seems more comfortable.
Cole loves Kaitlyn's decorations too!
When she does wake up, it's usually only for a few minutes and she isn't very focused. We are with her all the time and talk with her even when she's asleep. We know that she will one day remember every word we have said to her.
Holding Kaitlyn before going to bed last night
We have been blown away by the compassion and generosity of our family, neighbors and friends from afar. It is amazing to see how so many people come together to help out. The food we have received from neighbors has been extremely generous and really, really good! The Fieldstone Farmers (as we call ourselves in our neighborhood- Fieldstone Farm) can COOK! I seriously think we need to put together a cookbook cause I want all the recipes! All kidding aside (although really I'm not kidding) we can't thank everyone enough for all you are doing for us. The food, the cards, the donations to Kaitlyn's Fund, your children's drawings for Kaitlyn, the balloons, the ceiling decor, and most importantly the prayers and uplifting messages . It all touches our hearts in a way that we can never truly express in words.
Cole and Cousin Daniel
When it comes to a community coming together we are simply amazed and blessed and thankful and I could go on and on... THANK YOU!
When you have a child with a terminal illness, you come to some point of acceptance with the idea that they will pass one day, but I (Chip) can honestly say the process of passing was never really dwelled on; it was just a distant known. I think in my mind I hoped we would be living as usual with her normal set of problems that we adapted to as they arose and then one day her body would say no more and pass peacefully in her sleep.
If you can't wear clothes cause of fever, you gotta at least have pretty girly bows!
Here we are 7 days after hospice first said her lungs had fluid and she was likely making the transition. Early on it made clear sense; her body had too much fluid from feeding, so no more fluid. We gave it a few days and tried to feed her again, but her body said no so the answer was clear no food. After 3 days of barely feeding your child anything you start to wonder, what if she could handle some food or even a little water and we are starving her; maybe she just needed less. By the fourth day we felt like we had to try something so we gave her a little water just to see and help her if we could. Her body took it with no bile back up. On day 5 water went ok so we tried a mix of Pedialyte and water and her body took it. On day 6 we tried food again in a lower concentration and volume and her body took it. At this point it seemed hard to say no food because her body was telling us she could take it, but as we have learned all along the way with this disease everything is a balance of give and take.
Cole checking out the neighborhood while hanging out upstairs with his big sis
When she was without food for three days her breathing sounded better and her heart rates and O2 were good, but she was starving. Now three days into giving her water, then Pedialyte, then food, she is more alert, her eyes no longer look as bloodshot, but her breathing sounds horrible again, she coughs to no avail to clear herself, and makes these horrible sounds like she is gasping at times. Her only relief to quiet calm breathing seems to come with sleep and the pain meds to help her calm down.
She has definitely lost weight, you can tell in her arms, chest and legs
How is a parent supposed to choose to not feed and feel like they are starving their child to death knowing their body can take some food, but feel like if they feed their child they might be slowly suffocating their lungs with liquid? I always knew the disease would take her life, but I never really prepared myself for thinking the choices we would have to make might affect how long she lives and how she might pass. They are impossible choices with no right answer and no good outcome, but we have to make them and live with them. We have resigned to trying what we think is best and knowing that’s all Kaitlyn or anyone could ask of us, but it doesn’t make it any easier.
Kaitlyn and Cole enjoying some Baby Einstein together
For all those that are praying for Kaitlyn and us, I ask that not only do you pray for peace and comfort, but for clarity in making the best choices. Kaitlyn is here and fighting and we just want what is best and most comfortable for her. Thank you all for your continued support and overwhelming love.
A little over a year ago, we moved into our home in the Fieldstone Farm neighborhood in Indian Trail, NC (just outside of Charlotte, NC). When we were looking for a home, we were looking for a place that had a good community, with lots of young kids for Cole to play with one day and other couples who we could become friends with as well. We also didn't mind that there was a neighborhood pool and playground too. :-)
Since we have moved in, we have had little chance to meet many people in our neighborhood. We have met some. An occasional meeting outside or during our neighborhood yard sale and some through our Fieldstone Farm Facebook group. Most only know about our family through our blog and us sharing the blog through Facebook.
As Kaitlyn's disease progressed, we basically go nowhere, not even outside, other than to go to the store or a doctor's appointment. Kaitlyn can't tolerate her medical stroller anymore without choking so we don't even hang out on the porch. This obviously makes meeting neighbors and making friends extremely difficult.
With all that being said, many families in our neighborhood decided to help us. Even though most haven't even met us in person. They have set up a meal calendar to bring us meals 3 times a week for the next month and last night, they did the most amazing thing. They had a candle light vigil in front of our house for Kaitlyn.
We have all heard the message "Love Thy Neighbor as Thyself". What they have done is a TRUE example of this message.
I can't even begin to describe the feeling of looking out our window and seeing so many of our neighbors standing with candles and feeling their pure and selfless love. Kaitlyn was laying asleep the whole time but she was completely peaceful and we told her all about all the people outside that love her and are here for her, even though she was asleep. I can't thank you all enough for doing this for us. We are so blessed to live here and have such a supportive community. Thank you from the bottom of our hearts for such a loving act, we could definitely feel the love from all of you!
Our candle in our window
Here are some photos taken by Lawrence Cook (Lawrence Cook Photography).
Kaitlyn is still here with us. She got some really good rest yesterday during the day but last night she was up most of the night coughing and restless. She was able to tolerate some water and Pedialyte through her G-tube yesterday and last night but that is pretty much it other than medicine. We are suctioning her mouth A LOT cause of the thick stuff she is coughing up. It's a really difficult balance to make sure that we are doing the best for her (such as suctioning, etc) and at the same time keeping her comfortable. The two don't always match up. All we can do at this time is the best we can.
Here are some pictures from last night (Tuesday night):
Saying goodnight to big sis
Cole giving a hug to Kaitlyn's Bunny
Cole is pointing at Kaitlyn's cool hanging butterflies, lanterns and balloons
Kaitlyn spent yesterday afternoon and this morning surrounded with love. She had visits from Granddad and Grandot (Deanna’s dad and stepmom) and Memere and Pepere (Chip’s mom and Dad) and Gigi (Deanna’s mom) and little brother Cole. She’s been letting people hold her and just love on her. She even got some pretty Balloons from her friends the Kaspars which she checked out while I held her in my arms.
With Daddy checking out her balloons
We were able to get her the patch for pain that went on her shoulder and releases pain meds continually over three days. The morphine works, but since it peaks at one hour and we do it every four, this just seems like the best solution to ensure she always has something in her system to keep her comfortable. Her diapers have also had a reddish pink color in with her urine and hospice confirmed that this is likely bilirubin and a sign that her systems are continuing to shut down.
Reading some bible stories with Mommy
She had a more restful night, but I think it’s likely because she doesn’t have much strength to fuss and cry.
Getting some Gigi love
Her little body has had little to no food or water for over three days. The food and liquids were not being processed and the liquid was absorbing into her system and causing swelling and fluid in her lungs. When we tried to feed her after the second day, her body wretched and she tried vomiting so we had to stop. We also noticed the backup of bile, a dark brownish yellow color fluid, in her belly. We have been checking her G-tube to remove any backed up bile before giving her medicines. Yesterday afternoon we stopped seeing bile so we decided to try and give her an ounce of water. She did ok with it and we haven’t seen any more bile so far. We have continued to give her an ounce every few hours or so. We decided this morning to try Pedialyte and see how it goes. They say a person doesn’t want food during the natural process of passing but it’s so hard not to feed your child and we just want to make sure we are doing whatever she can tolerate. If her body gives us signs that it is not what she needs then we will listen, but we want to do all we can to help her if possible.
Mommy and Kaitlyn both rest better when holding each other's hand
We are thankful for the outpouring of love and prayers. It is so great to know Kaitlyn has touched so many lives. Please continue praying and lifting her up. We do not know how long she will continue to fight, but I know your prayers help her and us continue to be strong.
Katilyn's body is shutting down. She is no longer able to tolerate any food/formula through her G-tube, only medicine and a little bit of water. We have had to pull out bile that has backed up into her stomach using a large syringe into her G-tube. Her body just can't breakdown or absorb the food.
This morning with Gigi and Daddy
We are looking into a patch that we can put on her arm or back that can release pain medicine rather than putting it into her stomach. Maybe it will be absorbed better through the skin and into the blood stream.
Yesterday after a nice cool bath
She spiked a fever of 104.3 and her heart rate was up last night but since then it has improved. She is still running a fever, just not as high and her heart rate isn't as high either, possibly because her body isn't trying to process food that it can't (really we won't ever know exactly why).
Yesterday with Memere and Pepere (Chip's parents)
One thing we noticed last night was that her diaper had what looked like blood (dark pink) in it. Jordan, RN with hospice stated that she had seen this before and that it is probably a sign that the liver is shutting down.
Cole saying "hi"
All things we know are going to happen but actually seeing it happen is beyond difficult.
We are trying to make her as comfortable as possible. It's really hard as a parent to not feed your child, even when you know it would harm them if you did. Our natural instinct is to comfort, nourish and protect our children.
Please continue to pray for peace and comfort for Kaitlyn during this time.
