 |
| This is our beautiful angel, Kai |
A little over 2 years ago, our family had a tragedy. My brother lost his baby, Kai, to a very rare genetic disorder, Alveolar Capillary Dysplasia. What is ACD? "Alveolar capillary dysplasia (ACD, also congenital alveolar dysplasia) is a very rare congenital malformation involving abnormal development of the capillary vascular system around the alveoli of the lungs. It is a rare cause of persistent pulmonary hypertension in infants.[1] It also may be a rare cause of pulmonary hypoplasia.[2] Until mid-2012, the only possible outcome was neonatal death, with one of the longest surviving infants living 2 months.[3]
Babies with ACD may appear normal at birth but within minutes or hours they develop respiratory distress with persistent pulmonary hypertension.[4] ACD does not respond to standard therapies that resolve simple pulmonary hypertension. The lack of response is an important diagnostic clue." (Thanks Wikipedia). What a horrible experience for anyone to have to go through. My family has been pretty fortunate, we tend to be a fairly healthy family; Kai's death was the first immediate death, apart from Grandparents, that I've experienced. It's difficult to talk about, but I want to write the memories down before they're gone. It's been two years, and my heart still aches.
As anyone who has read my blog in depth knows, I come from a very religious family and community. This religion has some very strict "moral guidelines". Our sweet baby Kai was born "out of wedlock", and there were a few that saw this as an opportunity for a "lesson". It was hurtful, unloving, and completely ignorant. I still remember a sentence that cuts like ice "It's better if she doesn't live". Are you serious? All because this sweet, innocent, pure-love child was born to parents who weren't married. As you can see, I still hold some anger towards that sentence. But if I try to put myself in the accuser's shoes, I see a life taught and lived by principles that I don't agree with. A life lived by a defining faith as to the FIRM belief that children who die are immediately sent to Heaven to wait to be reunited So in this person's mind, it was better to not have to face a difficult life, born of sin. (Can you see why I may be a little upset with a religion that has promoted these feelings and thoughts? That's not what this blog is about). The anger, disappointment, and hostility only lasted a few days. (This was my compromise with myself, I wanted to vent and get all of this off of my chest and to release the negativity I'm still holding for what was said, baby steps). We became a team. A team of support, courage, and hope. My family made frequent trips to Primary Children's Hospital to spend time with my brother, his girlfriend, and to get glimpses of our baby. It was in the middle of the Christmas Season, but we all found time to be there. It was a roller coaster ride; I don't remember the details. One day she was looking good, the next they day, her stats had dropped dramatically. It was like this for a few weeks. (For exact details, I've copied the post my brother put on the ACDA's website about Kai's story). My brother and his girlfriend made the difficult decision, after all other therapy was completely exhausted, to stop the support, and let little Kai pass. Most of our family was able to be there for this event. We waited in the room, while my brother, his girlfriend, and Kai's brother said their goodbyes. After she had passed, we were given an opportunity to finally hold her. The first and last time I got to hold my niece, she had passed from this life. Her spirit wasn't in her body, but I could feel her energy in the room, stronger than I had ever been able to feel it before. I rocked her, I bounced her, I patted her back, and ached inside at the pain of losing someone without a chance of even getting to know her. I can't begin to pretend like I knew how it felt for my brother, but for me, it was one of the most difficult things I've ever had to experience. That was my personal experience with her short little life. Here was my brothers: (taken from ACD Associations website http://www.acd-association.com/)
 |
| Right before ECMO |
Name: Steven Bearden
Our child's name: Kai Marie seamons- bearden
The date our child was born: 11-26-2010
The date we lost our child: 12-16-2010
The hospital where our child was treated: Primary Childrens medical center NICU slc UT
The physicians who treated our child: brook( fellow) and all the top NICU docs
Our story: little Kai was born around 5:30 on 11-26-2010 she was taken from her mommy earlie because they thought she wasn't growing and apered to be under weight. She was born vaginaly weighing 5.5 lb ( aprox. 2400 kilos) birth went great and the NICU was on standby due to concerns of underweight. well she came out WeIghing more then anticipated, NICU was let off standby at that point, one of the nurses noticed a slight heart rhythm drop for a few minutes. Kai was then taken to the nicu and realesed about 20 minutes later with all her stats back to normal and her heart was doing it's job. It was so exiting that she was ok. Amanda and I were then transferred up to the newborn nursery area were we got a room and our Babie was there trying to breastfeed. she wasent very interested and by that time, kai had gone to the nursery to get a bath. We got her back and tried to breastfeed again one more time before we attempted to sleep. Kaia nurse came in to routinely check her and Kai was a little on the cold side so she went back to the nursery to get warmed up, at about midnight Amanda felt like something was wrong with Kai, she went and checked on her in the nursurey and immediately raised a concern, Kai looke purple/blue. They put her on the spo2 and her saturation was at 70. Kai then was back in the NICU. She responded well to mild doses of oxygen and a tiny bit of nitric oxide, they thought she had pneumonia and very mild and limited pulmonary hypertension, ( she was rapidly developing severe polmenary hypertension and her stats weren't stable for long, the had to keep going up on ventilation therapy and nitric and oxygen. She coded several times and was getting chest comparative at least 4 different times, then ECMO was introduced to us and that she needed to go to primary Childrens asap. Kai and I went there in a ambulance and once we got there she stabilized and ECMO was not started, the next day her stats took another nose dive and ECMO was givin, when installing the ECMO setup the machine malfunctioned and had to wait for another machine to be set up. They got done installing the canualsvand the Venus I believe had came loose or positioned incorrectly so the ECMO was pumping in more blood then pulling out, our little Kai filled to her max and looked like a little sumo Babie before the problem was corrected. Then her bodie started to blister from all that fluid. It was so hard to see her like that and the doctors had already told us that the outlook wasn't looking very good. Little Kai faught and faught. She started to do a 180 and got most of her blisters healed and most of her fluid out. Still on ECMO the system started getting very fiberouse and clots were forming. The changed the circuit on the ECMO machine and she kept her stats up were they needed to be. A day and a half after the circuit change, it started getting very fiborus and a large clot was detected ( they were able to get the large clot out sucessfully, 2 days later she was able to come off ECMO completely and her stats were exelent, her oxygen and nitric and all her meds were being weined down and she was doing great, at that point we were so exited that our Babie was actually going to come home one day! She got off of ECMO on 12-8-2010. ( a total of 9 days on ECMO) she was our little warrior princess and a real fighter. She was stable and down on alote of therapy for 3-4 days and Amanda and I were actually sleeping back at home and not so confined to the NICU. That didn't last long and she again begun to drop stats and needed to go back up on her therapy and reached maximum therapy very quickly, they really didn't have to many answers other then the pulmonary hypertension was back with vengeance. Also maybe some sort of an infection but all cultures came back negative. The then talked to us about acd a little mOre and with a little more depth. And the FICA said that she fits the description but would need a lung biopsy to confirm. Our little warrior was starting to fill back up with fluid because her blood pressure loved the volume, they needed to get her on lasiks to get the extra fluid off, yesterday they attempted a new i v. Even though she was on morphine and paralytics the second they tried sticking her she began to crash. That was early in the morning I watched her stats roller coaster while her mommy was pumping breast milk. Kai was filling back up and when they were able to give lassies in the past few days she didn't really respond. The doctors asked if they could take a small non invasive way to get part of her lungs to get it tested for cad. amanda and I then decided( with the doctors help and advice) that we couldn't let Babie Kai fill back up on fluids and crash if they tried to take some lung. We had a planned removal of therapy for 9 am on 12-17-2010 and was getting everything in order that we needed too. Within 2 hours of deciding that kai's stats begun to roller coaster again with her oxygen levels never reaching above 95 for over a split second her saturations were hanging from 70-85 for 4 days now. We decided we had better hurry so we get a chance to control her removal and removed her from all therapy on 12-16-2010 and she passed away at around 7 30 pm. We are very saddened from this outcome but comfortable with our decision because my little Kai angel was suffering spiritually. Her will to live was the most amazing thing I have ever experienced on my life along with many many others her spirit touched. After she passed we allowed them to take parts of her lung and intestine so we could know if she had acd or not. if she doesn't have it then the acd foundation will stil get our support. We are very thankful for your website and the information we have learned from it so far. It helps to know were not alone out here. With love, angel kai, jayleb her big brother. Amanda, and steve.
Try reading that without feeling some of the pain he went through. That was her brief life. It's been two years. I don't think about Kai every day, but I do think about her occasionally.
I recently participated in an excellent opportunity to donate my time and money into a cause that would not only be dedicated to Kai, but contribute to an organization that was
a very large part of her short life. Every year, Primary Children's Hospital does the
"Festival of Trees". The Festival basically looks like
Christmas threw up. It fills the ENTIRE South Towne Expo Center. I can't do the festival justice, so I'm going to let them say it in their own words.
"For 42 years, the Festival of Trees has been a “Gift of Love” to children at Primary Children's Medical Center. The Festival is organized by a volunteer board of 85 women who enlist time and talents from thousands of individuals, organizations, businesses, and families throughout Utah. Over $30.8 million has been raised for children at Primary Children’s Medical Center through the Festival since 1971, with $1,655,931.40 raised in 2011." (visit www.festivaloftreesutah.org for more details)
 |
| Date night spent making ornaments |
Everything is donated. There are multiple ways to donate from trees, wreaths, gingerbread houses, talents, and time. This year, I decided to play big and donate a decorated large Christmas tree. What this meant was that from August until November, this tree and most importantly Kai
were on my mind every day. I designed and crafted most of the decorations, bought the artificial tree, planned everything, and then put everything together. The coolest part? It wasn't just me. I had
so many
of my amazing friends
donate time, and money. I held multiple craft nights, reached out to people over facebook, contacted businesses to donate large items, and implored my best friends to help in any way they could. It would not have been as amazing as it turned out to be without their constant support and donations. I'm very proud to say that I have some of the best people in my life; they're truly inspiring.
So what theme did I choose? I made a Harry Potter tree called "A very Muggle Christmas" (as also anyone who reads my blog should know, I'm addicted to Harry Potter). I figured I needed to do a topic this year of something I knew well and was confident with.I can't even account for all of the hours it took to plan, and execute this project. I spent the early months purchasing craft supplies, searching the internet for ornament and decoration ideas, and started groups on different social media sites. I held craft nights every week where I tempted my friends with wine and good times to come and help knock out some "filler" ornaments. We are now pros ad modge podge. When I was about a month out until decoration day, that's when I really started getting into gear. I bought multiple Harry Potter items from the internet, and spent hours crafting golden snitches, stars, wands, and odds and ends. I had people donate everything from the books and movies to the Hogwarts Express for under the tree. There is so much more than just decorating the tree, e
verything has to be approved, you have to buy a specific stand, and everything must be secured by wire to the tree. There were meetings to attend, forms to fill out, decorations to make, research to do, and then the set up.
There was an entire day dedicated to the set up. I, luckily, did not need the entire day. I had friends come to help me put part of the tree together the night before the festival. I took work off the day of the setup and and met my sister-in-law at the expo center. It was an organized frenzie of "putting this here", "moving that there", "let's just trash that idea", "oh, this will work", and finished with tears of happiness at how well everything turned out. When it was time to go, I didn't want to leave my tree that I had dedicated so much of myself into. I kept going back to just look. I was simply amazed that I could make something like this materialize out of just an idea. I showed myself what I'm capable of. The night following set up was the silent auction where the trees are available for purchase. I was very anxious. I thought my tree looked good and I was happy with it, however I had no idea how others would feel. I waited for news from a friend who attends the auction portion every year. "Your tree sold" that's all I knew at first, which was a success for me because I just didn't want it to be a bomb. Then I received another text "holy cow, it sold for
$1,600!" Wow. I was elated! I, along with all of the people who helped, just raised $1,600 for Primary Children's! Admittedly, I was very proud and I couldn't hide it. I shouted my success on facebook, and I went back to the festival two other times just to look at my tree. Seeing so many other people stop and take pictures of the tree, talk about it, and see how excited they were made me feel very accomplished.
 |
| Finished Tree!! |
All of the money went straight to Primary Children's. From what I calculated, it cost about $800 to build everything, so I'd say doubling the cost to make it was a success. I was able to donate this tree to Kai; Write her story (for anyone who wanted to read), and show her and others exactly how appreciative I am for Primary Children's and the life they gave my niece. Primary Children's helps so many families. I've been tied directly to a few volunteer projects with them when I was younger, but nothing close to the depth of this. It takes a lot of
energy, money, and love, but something I will definitely be signing myself up again for.
 |
| The box of treasures |
This blog is to highlight the little life, that has affected me so much, and will continue to affect how I show my love and appreciation to all of those in my life. To go along with this blog, I'm going to be posting pictures of our baby, some of them may be disturbing to some, but it's important to me to remember just how hard she fought, so please only scroll down if you'd like to see her journey as well. She is our Warrior Angel. We miss you baby Kai.
 |
| My personal favorite of Kai, right after she was born, look at that face! |
 |
| This is what happened when she first started on the ECMO (it was pumping more blood in than pulling out, she more than doubled in size) |
 |
| Through her journey (she received blisters from the excess fluid) |
 |
| Our sweet baby, she couldn't be held while on support, and we could barely touch her. Notice her bow in her hair, she had the prettiest bows, it was sometimes all we could do to try to make her/us comfortable and have hope |
 |
| My mom, giving loves to Kai (as much as we were physically able) |
 |
| Our sweet baby right after she was born, before anything was detected, sleeping peacefully |
