Wednesday, October 15, 2014

update on life.. funerals, hospitals and heartache

3 months since my last post. Ive been in a not so great place these last few months which makes writing in here difficult.  Capri has been relatively well.  She had a week in patient stay the end of August due to Salmonella poisoning and strep in her blood.  We had a scare that she had endocarditis and was not sure if she was going to make it.  She had a TEE (trans esophageal echo) done while inpatient where they discovered some of her pulmonary veins had narrowed  since her last echo.  They were concerned that this could be the reason why she has needed more oxygen.  We came back a month later to go into the Cath lab to check her pressures and possibly stent her veins.  They discovered that the blood  has taken a new (and quite complicated) route to get through the heart.  It even created a new very large vein on the left side that is shunting a large amount of the blood.  Normally they would seal that vein off but right now it is what is keeping the pressures in her head low enough to stay alive so they are just leaving it alone.  We have lots of doctors on her team with lots of different solutions as to how to fix this new pressure problem.  From as simple as adding new medication to as complex as listing her on the heart transplant list and hoping she will receive a new heart. Home life has changed a bit in the last month, we have gone from 4 meds 3 times a day to 7.  she has gone from oxygen as needed once or twice a week to being on it full time at 1/2 liter.  I see that she is retaining water and working harder to breathe but she is still her happy smiley wonderful self. 

We met someone who has become one of my best friends back in June.  There little boy was in the CICU awaiting his 3rd open heart surgery (and was only 6 months old).  I instantly bonded with this mom as we discovered all of the things we had in common, including living just a few blocks from each other.  Listening to her story of living almost the entire life span of their baby in the hospital is heartbreaking.  Capri for sure has not had it easy but this month  she has officially been home more of her life than in the hospital (7 months hospital, 8 months home) I watched this amazing mama struggle with the ups and downs of the CICU life and watched their baby boy get sicker and sicker.  They finally placed him on the transplant list and hoped for a miracle.  Not long after (I think a little over a month) Ryder decided he had fought long enough and was ready to go home.  He passed away on August 21st in his mamas arms. you can read the story of his last day on earth at
 That day changed me.  I have known people whos children had passed away, ones who had affected me and I grieved for them, but it wasn't the same.  It isn't fair that someone who is such an outstanding mom, someone who did everything right has to go through this.  So many of our experiences were similar, Ryder just always had to one up Capri.  His death brought me back to our reality that we don't know how long Capri will be with us.  I have told myself this and I have prepared for it but isn't something you can prepare yourself for.  Its not something you will ever be ready for.  Its something that I beg and plead that will never have to happen to us.  That Capri will keep being that miracle baby and surprising the doctors. And every night I think about sweet Ryder and his mom and dad.  They are such an inspiration to me.  The way they have dealt with this tragedy absolutely amazes me.  They both are my heroes. 

On September 10th my mom called and told me I needed to get to Wyoming right away.  My wonderful grandma was diagnosed with ovarian cancer in October 2013, and was at the end of her fight.  I pulled Ashton out of school picked up my little brother who lives in salt lake and made the 7 hour drive to Wyoming in 5.
We got to the hospital to see my grandma in an incredible amount of pain.  She wasn't able to eat or drink anything.  She didn't want to talk or even move very much.  My sister mom and I slept in her hospital room fearing it would be the last time we saw her alive.  The next morning however, she woke up and was her normal feisty self wanting to know why in the hell she was in the hospital :)  We spent the next several days by her bedside talking about times when we were young, favorite memories and being flooded with people from the community who loved her. I had to bring the kids back to salt lake the following week because Capri had a swallow study and an appointment with neuro surgery to get a CT scan that I just couldn't miss.  On September 18th my dear sweet buba passed away.  How is it that in one year someone can go from healthy as can be to cancer viscously attacking their entire body?  Its not fair.  Death is not fair.. I need my grandma.  She was always around.   the first person to greet us when we got to Worland and the last one to say goodbye.  the one who would tell me everything was going to be okay with Capri even though we both knew it might not.  The one who was the first to tell me if I had put on a few pounds and needed to start watching my weight. God I miss her so much. 

So if you see me in the community and I don't say hello, or I seem like I have a cloud looming over me its becaue I do.  I am not as strong as you think I am.  I break down when I get home where I cant be seen.  I tell you over and over again about my daughter and how she is doing fine because I am trying to convince myself that she is okay.  that I am okay.  that this too shall pass...




































































Tuesday, July 15, 2014

Happy Birthday Capri

Everyone tells me that the first year with your heart baby is the hardest.  once you make it through that the rest is smooth sailing.  Well we made it to that sacred day.  We spent the day in our pajamas, watching movies and cuddling.  It was quiet and uneventful.  Ive had a hard time keeping my emotions in check lately.  I get overwhelmed with the thought  that there is not a "finish line"  not a surgery to fix everything and then she is better.  This is her life now and we will always have the fear of heart failure, the fear of SVT, the fear of aspirating.  This is our normal.  I lay awake at night and watch her monitor go from 95% oxygen down to 80% as she falls asleep.  Her doctors have told us it is time to put her back on oxygen every night now.  I want her to get better. not worse.  this isn't how it is supposed to work.  I cant just watch her go back into heart failure.

We had Capris birthday celebration a week early so that we could spend her actual day at home.  It was the perfect first birthday!  My wonderful friend Brooke donated everything from her party rental store to make it memorable.  We had a popcorn machine, a slushie machine, carnival games tables with beautiful linens, a canopy with a face painter and balloon animal maker.  The park was filled with our friends and family.  We ended the night with an amazing firework show that had the whole neighborhood out in their yards to watch.  I am so grateful for all of my family who drove the 7+ hours to help us celebrate and then did all of the setting up/cleaning up so that I could visit with friends and enjoy Capris birthday.  We also received a cake from "icing smiles" a non profit organization that has bakers donate their time and supplies to make cakes for children with life threatening illnesses.

We asked that instead of presents that people do a random act of kindness in capris name.   We have been so beyond blessed with the financial support of friends and family that we wanted to give back.  That is something that I haven't talked a lot about in the blog.  Not because I am not grateful I assure you I am, I just don't know how to find the words to thank everyone for such an amazing gift.  When we planned our fundraiser to help us get to mayo I was told by a friend that I was taking advantage of people and that there were others in the world that deserved help more than us.  I was heartbroken.  I have never had to ask for help from anyone before and doing that fundraiser was something that I had  struggled very much with.  We knew that on one income though we would not be able to afford the care that Capri needed so we swallowed our pride and accepted help.  Our fundraiser raised about half of the money we needed while we were in mayo (not including medical bills).   We were so grateful for all of the people who had supported us.

Then while we were in Minnesota person after person wanted to help.  I told them we were ok and that people had already done enough for us.  They did their fundraisers anyway and changed our lives.   Between the medical bills, the 12,000 miles mike and I put on our cars driving back and forth to PCH, hotel rooms, food ect we would be filing for bankruptcy without everyones help.  Instead we were able to pay all of Capris bills, not worry about the drive to the hospital, or eating at the cafeteria.  We were able to pay off several of our bills that freed up money for us to start saving for capris next surgery and our future.  We even had enough money to each buy something for ourselves. So thank you.  Thank you for caring about my daughter and helping us.  Thank you for bringing us up and holding us as we were falling apart. I will never be able to desbribe to you how much that means to us.

 our wonderful pediatrician.  how many drs show up to their patients birthday?
 
 








  We have spent the month paying it forward and have loved every second of it.  From buying peoples groceries, to leaving encouraging notes.  to making meals for the homeless and helping out other moms in need.  You all have helped me become a better person and I will forever be grateful.  There is not a day that goes by that I don't think about all of you and how blessed we truly we are.

Thursday, June 26, 2014

365 days since i found out your heart was broken

Well my guess is that no one still reads this blog because I have been so terrible at updating.  My laptop broke while I was in Minnesota and at night I just don't have the energy to sit at a computer to type ( and our office computer is a mac and I have absolutely no idea who to use  it).  So there is my excuse.. now let me catch you up on the last few months.

march through may was pretty mellow. We worked on growing and normal baby development stuff.  She was hospitalized for 5 days for SVT, dehydration, rhino virus and adeno virus.  Unfortunatly when Capri gets a cold her body just cant handle it so we almost always end up in the ER.  Thankfully she was only in the ICU for one day and spent the rest on the main floor. 

In June she went to the ER because she had 5 diapers that were full of blood.  Blood that soaked through her diaper, her clothes and her blanket.  I thought for sure she would be rushed to the ICU with some life threatening thing but the GI doctors were not concerned and after a day of blood work to rule out cancer they sent us home.  This was also the day that we were supposed to finish our backyard and lay sod.  I think Capri knew I didn't want to help ;)  We were so lucky to have wonderful neighbors and friends spend their Saturday helping Mike and making our yard beautiful.   After an emotionally exhausting day, coming home from the hospital to see a beautiful yard that we would finally be able to play in was absolutely perfect.  We are so lucky to live in such a great town.

Fast forward a few weeks later (June 23rd) and we are back at the hospital for a planned surgery.  This was so surreal because we have never been to the hospital on a planned visit.  its always been E.R, ICU, life flight, emergency surgery.  She was there to have a colonoscopy, endoscopy, bronchoscopy and echo.   The bronchoscopy showed that her airway has a bone ( I think it was a bone .. maybe cartilage..I cant remember now) that is to short so when she swallows it doesn't protect her airway and she aspirates.  Her ENT wants to wait 6 months and see if we see any improvements and if not we will talk about airway surgery. I haven't heard the results from GI but should know tomorrow if she has any allergy cells or celiac disease.  Her echo showed that her tricuspid valve is leaking moderate to severe. Her open heart surgery was supposed to fix that so they are now talking about sending us back to Minnesota for a 2nd OHS.  We should hear back from her surgeon on Monday what he suggests. 

Home life has been pretty great.  She is finally gaining weight ( 1 pound in the last 2 weeks)  Insurance approved her formula so no more  $1200 formula bills.  We have had her off oxygen at night for about a month now but she has started dipping into the 70s the last 2 weeks so im not sure how much longer we will get to stay  "tube free" . 

We have made it 365 days since we found out about her diagnoses.  Last year at this time I was just starting this blog.  Scared to death that my baby was about to die.  Mike and I laid in my hospital bed all night talking about where we wanted our family to be buried and how were we going to tell A and B that they weren't going to be able to bring home their baby.  I started this blog to help me cope with the devastating news and a way to let my family know what was going on without having to repeat it 100 times.  Now I have the beginning to a great story of our miracle baby's life.  There are entries on this blog that I cant read yet because its too hard to relieve some of those days, but as she gets older I know I will be so grateful I wrote all of this down.  So if anyone is still reading, thank you for staying by our side and caring for our beautiful daughter.  I couldn't have made it through this year without you and I am so looking forward to having her second year be full of uneventful days and boring blog entries :) 

Tuesday, April 8, 2014

tube free baby

Look who is a tube free baby! Just picture a "normal" 5 month old baby  and Capri would fit in just about right :)  At the rate she is going though we will be caught up to "normal baby" status by her first birthday. 

We took her to see a GI doctor today because over the last week she has had a lot of blood in her stools.  (sorry TMI)  I was worried about NEC.. which is where portions of your bowel undergo necrosis or tissue death.  It normally happens in premie babies but is one of the side effects of  the thickening agent she is on to let her drink from a bottle.  Fortunatly her xrays looked normal so hopefully we will hear back in the next few days about the blood cultures to figure out why she has having the gi issues.

Tommorow is a big day for my family.  My sister is going in for surgery to fix her herniated belly button.  I wish we could be there to help her recover but we will be heading to Wyoming in 2 weeks so making a trip right now wasn't feasible.  I am going in for a spinal MRI first thing in the morning to see if I have any permanent damage on a nerve.  I had a pinched nerve 7 months ago that I kept meaning to go to the doctor for but life happened and Capris doctor visits came first and it just never happened.  Well over the last couple months my arm has lost some feeling to it and  feels like I  have a permanent sunburn so we are ruling out any permanent damage.  Hopefully they will tell me I need to take some steroids and just send me on my way.

With any luck at all Capris tests will come back all clear, my tests will come back clear, my sisters surgery will be successful and we can all just forget about hospitals for awhile!

Wednesday, April 2, 2014

we are still here

I cant believe its already been a month since we have been home.  This month has gone by so fast, a whirlwind of trying to get back into a normal routine and follow ups with about a million doctors.  I have enjoyed so much being away from computers and just spending time with my family that i apologize to everyone for not being better at updating on Capri.

She has been dong so great!  She is slowly gaining weight and working on feeding.  She continues to fail her swallow studies but is able to drink from a bottle as long as the milk is the consistency of honey.  Her goal is to drink 24 ounces in a day and right now she is getting about 15 of those through a bottle.  We are so close to getting rid of that feeding tube!

We are also losing her portable oxygen tanks on friday.  I expressed my concerns to her cardiologist about wanting to keep one in my car just incase she went into SVT.  His response was "kendra, its been 3 months since shes had any SVT.. its time to let go of the tanks.. she is better now".  Well its going to be his fault when he sees me in a month and all of my hair has turned grey :)

We are working with occupational therapists and physical therapists 3 times a week to get Capri back on track with normal "baby things".  She is tolerating being on her stomach for almost a minute at a time.  She isnt sitting yet but she did finally laugh for the first time which was the most beautiful sound  i have ever heard.






This whole experience has changed me as a  person. I have watched other families go through experiences like ours and have thought to myself "i am so lucky to have my family"  "im going to hold my kids just a little bit closer tonight"  but then tomorrow comes and life gets back to normal and i forget about that moment.  Capri has changed that in me.  Every moment i have with the kids i have the thought burned into my head "what if this is our last moment together"  Every time i kiss my husband goodnight the first thought in my head is "what if we don't wake up tomorrow?"  This living in constant fear is both a blessing and a curse.  I dont take moments for granted anymore yet i dont know how to get off of this emergency roller coaster.  I hope that in time things will get easier and i wont be such a ball of stress.  That i will remember to cherish every moment but with enjoyment vs fear.  In time im sure I will.  Someday this will all be a distant memory of Capris crazy first year of life.

Thursday, March 6, 2014

update on being home

Well its been a few days since my last post.  I have been enjoying being away from electronics and just spending time with my husband and kids.  we've had a week full of doctor appointments, home nurses and trying to figure out our new normal.   Our pediatrician had not received any information from the mayo clinic so when we came to do a base line check up with him, he had no idea Capri even had surgery.  He was excited to see that she was doing so well though willing to help us with the obstacles she still has to overcome. 

we've had home health nurses occupational therapists, physical therapists, home health delivery people and pretty much any kind of healthcare personal you can think of stop by this week to set up a plan to get her back on track. 

Capri failed her 2nd swallow study so we are still mostly feeding from her tube but letting her try a bottle here and there.  She still has no interest in it which does make me a little anxious for our future.   I think a gtube surgery is probably in our near future but I really am trying to avoid another surgery if at all possible.

Capri decided to pull her feeding tube out on Wednesday while I was putting A and B down for naps.  I called home health to see if anyone could come help me place it but they were all tied up until later that night.  I learned how to do it in December so decided I could just do it by myself.  Well miss C was not about to hold still while I shoved a tube down her nose so I had Ashton hold her head while I tried to place it.  Yes I had my 5 year old be my fill in nurse, don't judge.  I kept hitting the back of her throat and psyched myself out that I was going to stick it into her lungs so  in the end we made an ER trip and waited 3 hours for them to spend 30 seconds to place the tube. This is another reason why putting a gtube in is probably going to be necessary. 

Besides  the medical stuff we have been loving just being able to lay in bed and watch cartoons, making dinner together every night  and having amazing neighbors/friends stop by to check in on us.  It is a wonderful feeling to be home.  Something I have always taken for granted but now I catch myself watching the kids play together realizing just how lucky we are to all be under one roof
 Making kale chips which are surprisingly really good.  A and B loved them.

 Got out the high chair so sis could sit with us at dinner
 
 
 
 
 
 
Enjoying some sweet potatoes. 
luckily her aversion towards food is only when its in a bottle

Monday, March 3, 2014

reunited

I walked out side to throw away the trash as i saw my dads car turn down our street.  I ran to meet them and saw A banging on his window waving frantically.  It has been way to long.  Being away from your children for a month in a half is brutal.  Everyone is home now.  Our family is whole again.

I asked B what she wanted to do today and her response was: well probably just hug you and kiss you a lot.  Fine by me sis!  We played most of the afternoon and visited with my parents and Mikes mother.  Capris nurse came by to change the dressing on her PICC line. A. told him that he was a doctor because only girls were nurses and boys were doctors.  Fail.. we need to talk about this gender equality thing litttle boy.

Capri did great all day. Her oxygen was in the high 90s and she spent most of the day sleeping.  Having the kids run around screaming playing and even fighting is such a calm feeling.  Everything is going to be okay now.  We are home