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

Saturday, March 1, 2014

pulse ox

Last night was quite the night!  We couldnt get Capris oxygen to stay in the 90s despite having her be on 1 1/2 liters of oxygen.  Both our home health nurse and the cfardiologist where concerned that we left the hospital to early and she maybe wasnt ready.  The on call dr called me 4 times throughout the night to check her oxygen and i woke up probably every 15 minutes to make sure she was okay.

This morning as i was playing with her and getting her dressed for the day I noticed her oxygen was at 105.  How is that possible?  After looking more closely i realized that we had been reading the machine wrong this whole time.  We were looking at her heart rate vs her oxygen.  She was sating at 100 with no oxygen on.  I think my brain has finally decided its had enough and left for good.

We spent the rest of the day playing. I went grocery shopping which was a little surreal.  I just kept thinking to myself.. are we really home?  Do we really get to stay home?  I can cook meals and not have my regular "grilled cheese and french fries lunch"  It feels so good to be home i dont even know how to describe it.

A winter storm hit wyoming so A and B where not able to come home today.  Hopefully the roads will open up tommorow and we will be able to have our family together again.

Friday, February 28, 2014

coming home

When I got to the hospital today, much to my surprise Capris doctors informed me that they were going to discharge her today! She went into the OR to get a picc line placed so we could continue to give her IV meds for the next 2 weeks and then got ready to go home.

We left the hospital around 8 to meet the home health nurse at our house by 9.  When we got here she was already here but they hadn't delivered capris medicine.  Around 1030 he finally arrived and brought a box filled with IV flushes, heprin to keep the line open but forgot the actual antibiotic.  it is now midnight hopefully he will be here soon so she can get her meds and we can settle in for the night.

She is also struggling to keep her oxygen up which is strange because in the hospital she stayed in the mid to high 90s with nothing to help her.  Right now she is on 1 liter and sating at 85,  If we cant get her to back up she will need to be re admitted.

It is great to all be home and will be even better when A and B arrived tomorrow.  I asked B what she wanted to do when she gets home and she told me "well probably just hug and kiss you a lot mom"  I miss my little munchkins so much I cant wait till they are back in my arms!

Heres hoping for an uneventful night and no more hospital stays~

Wednesday, February 26, 2014

home

The last two days have been such a whirlwind ive barely been able to catch my breath.  We found out yesterday evening that insurance had approved the lifeflight and we would be leaving in the morning.  I spent the evening at Amanda and Chris's hotel visiting with them and Jessica and Aaron. Realizing that this is probably the last time we will all be together but not wanting to admit it.  We delayed our goodbyes and said they could wait until the morning.  I tossed and turned all night so excited that it was finally time to come home. 
I got to the hospital this morning around 730 so I had time to see all of the doctors and nurses and say all of my goodbyes.  All morning everyone from surgeons to the janitor lady came in to give us a hug and wish us good luck.  All of these amazing people, my family when I was alone.  I am going to miss them all so much!

We loaded capri into a transport van and then onto the lifeflight.  The flight was so different from our one out to Minnesota.  Capri slept the whole way and did fine on room air.  I took a nap and the lifeflight nurse read a newspaper.  it was a no stress relaxed trip.  Once we got to primary childrens and got the doctors and nurses  re acquainted with Capri we noticed her sats had dropped into the 80s.  I knew being off oxygen was going to be short lived here but I was hoping it would last more then a few minutes.    She drifted in and out of sleep most of the afternoon and woke up just long enough to give her daddy a big grin.  We are back home now but will head up to the hospital first thing in the morning.  It feels so great to be in my own bed with my husband laying next  to me.  Now we just need A B and C back to make our family complete

Monday, February 24, 2014

When will we catch a break

Today has been a hard day.  Last night Capri spiked a fever as i was leaving.  This morning i found out she has 2 different kinds of bacteria growing in her blood stream.  We took the picc line out and after 5 different attempts from 1 IV specialist and 2 doctors we finally got a new line in capris foot.  Because of this bateria she will need to be on IV antiobiotics for 2 weeks.  If insurance denys our second request we made today for a life flight home we will be stuck in minnesota till mid March.  I am beginning to feel like we are never going to come home.  Everyday it gets harder to be away from my husband and my other 2 kids.  Im pretty sure they think grandma and grandpa are their new parents.  I am trying to be positive and i know we are in the best place to have a sick baby but come on!  2 blood clots 2 lungs collapses 2 bacterial blood infections a chylus leak 2 major heart surgeries 3 failed attempts at extubation... when is it our turn to catch a break?  Baby girl i know you like the attention but its okay to let the other kids get some of the bugs once in awhile.. just stay healthy~

Hopefully we will hear from insurance tomorrow and at least have a plan on moving forward.  Something to look forward too.  On a  positive note our friend Grant was discharged today.  That little boy is a champ showing all of us up.  Nathan is still stable and will hopefully attempt extubation tomorrow.  He has a long road ahead of him as well.  If nothing else we will have company in our misery :)

Art of Deduction


I am sorry to say, but for those of you who came here looking for more amazing writings from Mrs. Ware, you will have to wait until tonight. I am informed that people are actually inquiring about my ware bouts and what it is like from my end of the spectrum. Well, where oh where do I start.  Since my last update on 1/30/14, things have not really "changed", but rather altered a bit. Now that Capri seems to be doing much better in her recoveries, my nights filled with worry and wonder have now been replaced with promise and excitement. The amount that I miss my family has grown more colossal, and I am ready for them to come home, Not today, but yesterday.


I have spent the last few weeks still trying to find ways to fill my time. I have been looking for a project that will really pass the time, and challenge my mind.  While doing laundry, I looked around my unfinished basement remembering where I lift off 2 winters ago and planning out what still needed to be done. In no time at all I managed to find some Lowes gift cards I had and I just could not let funds remain on them any longer. Off to Lowes I go to buy the supplies to finish a basement. Does anyone here know just how many 2x4x96" boards can fit inside of a Saab Sports Sedan? You would imagine the looks I got in the parking lot when people saw me wheeling out a cart full of wood and popping the trunk to a mid-size sedan. I can't prove it, but I am convinced people were "pretending to talk on their phones, and looking for something in their vehicle" just so they could stick around to see if what they were seeing was actually taking place. As people watched with disbelief, I think around the 6th board, some of the on-lookers started a betting system on how many boards would fit. I think there were 4-1 odds betting on which window would get shattered first. 5-1 odds on total amount of boards I could fit in, which had a 6-1 odds bonus if they guessed correctly whether the trunk could close or not for my departure. I managed to fit 34 2x4x96" boards in my car without so much as rolling a window down, and the trunk closed without the assistance of a rope. I think 98% of the people watching this spectacle still don't believe what they witnessed. 


I finally get home and after I am finished unloading my cargo I think to myself, let the magic begin. It is always fun to have a project where I get to cut, break, measure, use a hammer to swing it violently then repeat. After much time of basement work, a little cutting here, hammering there, and running out of boards,  I stop and step back for a good look at my handy work and at that time my mind has been relieved of fear and lonesome, and replaced it with deep concern for my basement building abilities. How did that get up there, why does that board not fit, why are there so many screws left over, what is that dripping sound, are just a few thoughts processing through my mind. Not to worry, I did plan ahead and picked up a roll of duct tape while I was at Lowes for situations such as these, that's this weeks project.  By the way, does anyone know someone that can clean up 4-5" of standing water in a basement?   

 But in all seriousness, it has been a great way to pass the time and just not think about anything except measurements and lumber. It has been time well spent over the last couple weeks I am excited to keep working on it and my other projects.


I cannot post today without saying thank you to all those who have brought me dinner over the last week. It has been great to meet all of you, and it has been great to eat real food again. It could not have come at better timing, when I was provided my first meal, just the night before I had ran out of hotdogs, and was down to my last cup-o-noodles. Speaking of that, did you now that's not real meat in those things? I have learned the craziest things the last few weeks. But honestly, thank you, they are so amazing and the food is amazing! The pot roasts, chili, chicken tortilla soup, pizza, tacos, chicken and pork burritos that would give CafĂ© Rio a run for their money, and some delicious chicken turnovers that were perfectly prepared. Kendra might have competition with her chicken turnovers. I must warn you, I judge all my meals like Chef Ramsey on master chef. But don't let that intimidate you, my baseline for taste and creativity is somewhere between a cheese tortilla rollup, and a Jell-O Pudding cup.  Under any other circumstances, I could really get used to this meal delivery service. Now onto desserts, I had some Crepes last night that were amazing. I was given some churro cookies that were full of flavor and awesome, a caramel chocolate whip cake/pie that was great, and some glazed donuts that really hit the spot, plain glazed is my favorite. As you can tell from above, I have been eating well while Kendra has been gone.... Honey I was just thinking, if you wanted to stay back there a day or two longer to see all that Minnesota has to offer, that is fine... You deserve it!


I have started watching a new show called "Elementary", and it is very good. A show about Sherlock Holmes and Ms. Watson. Another personal recommendation from myself for some good entertainment.  Being home alone the last 3 weeks, on top of everything else, I have actually learned quite a bit. the next time I post, I will list some of them so that other husbands can print them out when their wife goes out of town and use it as a "survival guide".


Now back to your regularly scheduled author.
 
 
 

Saturday, February 22, 2014

bottle feeds

Miss Capri drank from a bottle!  for most babies this is nothing but for our daughter it is huge!  She wasnt able to take a bottle for around 5 weeks.  When they finally let her try she drank it down as fast as she could for the first day.  Then she realized that we were giving her formula that was actually really gross so she lost all interest.  We tried and tried but she would not even attempt to suck on it.  Today we tried another bottle from the NICU to see if that would help.  Its a bottle designed for preemies with cleft palates so it has a very slow flow (which is good because she is still at risk for aspirating).  After a few attempts she latched on and drank for almost 15 minutes.  She fell asleep about 2 minutes in so it was mainly just comfort sucking but it was still sucking!  We will continue to try and hopefully get to the point of regular feeds so we can get that pesky feeding tube out of her nose.

The rest of the day has been pretty quiet.  We went on a wagon ride with our buddy grant to see the catholic chapel and another ride by ourselves.  I ran into a friend from worland in the cafeteria which was quite the site to see.   She took our stroller back to worland for us so we dont have to pay $100 to ship it.  We are also still working on figuring out the plans to get us closer to salt lake.  We wont hear much until monday though because no one works on the weekends.

Friday, February 21, 2014

a bump in the road

Once again our plans have changed.  Insurance seems to think that our flight back to utah is non emergent so they are only willing to pay for 80% of the bill leaving us with a huge portion that we just cant afford.  The doctors are going to call and explain on monday why Capri does need to be moved and why she cant just fly commercially to hopefully help them understand.  If they still disagree however we will need to stay in rochester until she is fully better and able to fly home commercially ;(

We spent the whole day having visitors from throughout the hospital coming to see us and say goodbye.  More than a few tears were shed realizing that this may be the last time i ever see any of these people.  Dr Oliver came in to see us and give me a hug.  He sat in our room for 15 minutes telling me how he prays for Capri every night and how much cares about the 2 of us.  He told me what an amazing mom i was and how much he admired me.  This man who is one of the most amazing people i have ever met admires me?  It was such a sweet sentiment and it made my whole week.  Everyone we have met in Rochester have been such outstanding people and i truly am going to miss each and every one of them. 

We will be here at least until the middle of next week possibly  the week after now.  Hoping to figure out all of the kinks with insurance and get our family back together as one.

Thursday, February 20, 2014

Hold your breath and pray

What a day its been.  I got to the hospital this morning to find out our friend Nathan was in surgery for his 2nd attempt to get off ecmo.  An hour into it Jessica got the call to come down and talk to the dr.  Quick means good right?  Hes off ecmo and everything went smoothly.  Amanda and I sat in Capris room talking noticing that all of the nurses were gathering by Nathans room and a quietness seemed to blanket the ICU.   Our nurse came back with a solem look on her face and said she didnt know anything but things didnt sound good.  Amanda got a text shortly after saying that Nathan was in bad shape and that he probably wasnt going to make it.  We ran out of the room to find Jessica.  Our babies were having good days.  We are planning there discharges.  Jessica needed friends right now.  We went into the conference room where Nathans parents were.  As soon as eye contact was made we all felt the tears coming.  Jessica explained that they were unable to take Nathan  off of lifesupport and the only thing left to try was to do the glenn (one of the surgeries that Capri had).  There was a lot of internal bleeding and not a great chance that Nathan was going to pull through.  This is something that is always in the back of our heads having a sick baby.

   We all know that at anytime we could be told that our baby was at the end and is not going to make it.  Knowing that and living it though is compeletly different.  Ive known this mom for less than a week yet i can feel my heart tearing apart like it was my own child in the operating room.  These parents are amazing people.  Its not fair.  None of this is fair.  We spent the rest of the morning talking about our lives, our experiences in the hospital and life at home with a sick baby.  We all come from such different worlds all across the country yet our stories are all the same.  I wish that my husband was here.  I am jealous that these other moms have their support system here. They have someone to lean into and cry when things are hard.   I am so grateful that i have an amazing husband who loves his job and is willing to sacrifice being here so he can continue to pay our bills and make sure that we are supported in every other since of the word but somedays i really wish he could just come by for the day. 

Amanda and I ran to the cafeteria with her husband to get snacks and drinks for everyone.  When we got back (with a bag full of every kind of snack you could imagine in hand) we saw Nathans nurse talking in the hallway.  My heart stopped and i felt that lump in my throat.  He didnt make it.. How is this family going to get through this?  How does anyone get through this?  But then as we walked by she smiled and said "Its good news".  Those 3 simple words and everything changed.  We walked into the room to see his parents on the phone crying telling their parents that Nathan was ok.  He made it through surgery is off life support and is stable.  Thank you God he is stable. 
We spent the next hour laughing listening to Chris's stories of being in the marines and the crazy things he saw overseas.  Of Aarons stories being in Vegas and the.. well crazy things you see in Vegas.  The entire dynamic of the room has changed.  We could all breathe a little easier.  These girls have become my family out here and i dont know what i would do without them.

Capri is doing great still improving everyday.  We will be lifeflighted back to Salt lake on Monday where she will finish her healing at primary childrens.

Wednesday, February 19, 2014

staying the course

Capri has had an upset stomach most of the day, throwing up every few hours.  We did Xrays to make sure the feeding tube was placed where it was supposed to be and discontinued her formula for the chylus leak.  I hope we can figure out the problem soon it makes me so sad to see her get sick during every feed.  Besides that not much else happened today.  ENT still really wants to take her down to look at the erosion in her throat but cardiology is fighting against that saying that it will put to much strain on the heart.  Insurance approved our lifeflight home and we have talked to capris cardiologist back in salt lake to get her back next week.  The plan is to fly home next tuesday.  Ironically that is the day we were scheduled to have Capris open heart surgery before she changed our plans.  What a perfect day to go home.  Our other little friends in the ICU are still fighting to become stable but everyday gets a little better. Please continue to keep Nathan, Grant and there families in your thoughts. 

Tuesday, February 18, 2014

talk of going home

We spent today working on healing.  Capri is completely off of oxygen now and off of all IV medications except for her blood thinners.  We are trying to expand her stomach to get her to start eating more.  As of right now she has no interest in eating from a bottle, she wont even attempt to suck.  We are hoping that with time she will realize that she likes food again and start trying.  They have decided not to do another swallow study for now because she will most likely fail so she has to only drink from slow flow nipples and avoid water and clear juices.  She is still struggling with pooping and needs supositories to get things going (sorry TMI).  All of her issues right now though are just minor things.  Things we can deal with at our home hospital.  So we are starting the process of getting home.  The social worker started getting ahold of insurance to approve a lifeflight back to salt lake sometime next week.  She isnt strong enough to leave the hospital yet but the care that she needs is something that our home hospital is more than capable of taking care of. 

It has been 6 weeks now that Capri has been in the hospital.  That is how long most moms take off for maternity leave.  With my other children i remember 6 weeks going by so fast and not being ready to get back to the real world.  Now that is all i want.  I want to be home to make dinner, to do laundry without having to go to the laundry mat, to give night time baths and fight with kids about brushing their teeth.  This 6 weeks have been the longest 6 weeks of my life.  I know that our end isnt close but if we can at least get back to salt lake i can be close to my husband and other children.  I cant wait for the day when we get to say we are going home all together as a family. 

Monday, February 17, 2014

lots of improvement

I moved into my new hotel last night.  When Mike came to visit i sent my computer home with him because i had one in the ronald mcdonald house so my posts will be in the mornings now because i will need to use a computer at the hospital.

Capri is doing AMAZING!  We spent all day yesterday playing and working on motor skills.  We sat on a mat on the floor and worked on sitting and head control.  She is so tiny it is funny to see her sitting up.   She is smiling all day long and trying to talk to the doctors. Her voice is still wraspy/squeaky so when she gets excited and tries to talk high pitch squeals come out that scare her.  She looks around like "who just did that?"  It is adorable.

Today we gave her a real bath in a tub.  This is one of the first baths she has had this year.  She smells SOOO good.  Sponge baths just dont quite cut it.  We also took her off of oxygen and she is staying in 100%.  Her right lung has finally started to open up and is looking great.  We are going to start trying her old formula this week.  She has lost pretty much all interest in sucking from a bottle so getting her to eat is going to be a struggle.  Until then we will just feed her from the feeding tube.  We are transitioning her over to taking her medications orally.  She will come home on 2 heart medications 2 diaretics, viagra, and she will need shots in her stomach twice a day for the next 3 months.  So the surgery wasnt a fix all come home a new baby but we are getting there.  In time we will be able to ween down the medication to 2 heart meds and 1 diaretic until she is around 6 years old.  At that time she will need another surgery to stop her SVT and then we might be able to be med free.  My baby girl is doing it.  She has finally decided its time to get better.  I am meeting with social work and discharge nurses today to make a plan to possibly come home next week.  That seems so surreal to say..  we might be coming home!! 

Saturday, February 15, 2014

"how did you get through this"

It has been over a week of good news.  Capri is finally doing it.  She is finally getting better.  She is completely off pain medications now and is still suffering from withdrawals but is getting better.  She doesn't have much of an interest at all in taking food from a bottle but the formula they are giving her for her chylus leak is supposedly pretty gross so that is understandable.  She should be able to go back on her regular formula next week I just hope its not to late and she will still take a bottle.  She is still so tiny, we have put her back in newborn diapers.  We worked with her occupational therapist today on remembering how to roll over and head control.  She gets angry easily and doesn't have a whole lot of interest in doing much but lying down.  She can take as long as she needs though, we will get there!

I also learned today that I have been picking her up wrong.  Because they had to crack her sternum open to get into her chest you aren't supposed to pick them up from under her arms.  Oops!  She hasn't seemed to mind though, that is going to have to take some time to get used to.

I know I have said a million times how grateful I am for the wonderful people in our lives and I wish there was a word to truly describe my feelings.    Today the town I grew up in held a fundraiser in our behalf.  According to my mom there were so many people who came out to support us and tell my parents how they read my blog and pray for our little girl.  They raised enough money to alleviate all of our stress financially.  I spent the afternoon next to Capris bed crying so beyond grateful that people care about us. I am so lucky to have grown up in such an outstanding community that truly cares about one another's well being.  I will forever be indebted to all of these wonderful people and cannot wait until the day that we are in a place that we can help another family in need.  This experience with Capri has truly changed the way we live our lives. 

I spent the afternoon visiting with the other two moms with EA kids.  Listening to their stories, their trials.  One mom kept telling us how lucky they have had it.  That in there 8 months with dealing with ebsteins they haven't had to deal with any of the stuff we have.  I look at her though telling us stories about how during her sons first open heart surgery he had a stroke and seized afterwards.  In my head I am wondering how in the world did you get through that.  How horrific that must have been to deal with.  I look at our story and while we have been in and out of the hospital most of her life we haven't had to deal with anything like that. This is our first and hopefully only open heart surgery.  And to the other mom whos son has already had two other procedures both which didn't work.  When they got here his tricuspid valves where shred to pieces and there was nothing left to fix.  So Dr. Dearani created new valves out of some part of a pig.  not replacing the valve but actually creating new ones.  A procedure that has only been done 2 or 3 other times.. ever.  Handing your son over knowing that they are doing something completely experimental.. how nerve racking that must be!  How did you get through it?? They talked about bringing there babies back to the OR.  They were awake and playing.  They weren't sick like my baby.  How hard that must have been to walk away from your "healthy" baby and hope that you were going to see him again.   I guess we all get through these things the only way we know how.  We hold our breath and hope to God that everything is going to turn out alright.  And in Capris, Nathans, and Grants case they did.  Our kiddos our going to make it!  They all had different pathways that lead us here but in the end they all are fixed and we are all going to be okay. These families are from all across the country but the 3 of us are going to be friends forever.  I am so grateful that we had to come 2 months early for surgery so I was able to meet these wonderful women.

Friday, February 14, 2014

head cold

Well I think my body has finally decided its okay to let its guard down.  Ive spent the day curled up with a Kleenex box feeling like someone filled my head with hot air.  I have loaded up on medicine and am hoping that tomorrow I will feel better so I can go see capri.  I didn't go in today because I don't want to risk getting her sick and setting us even further back than we already are.  I had a wonderful mom bring me soup tonight and sit and visit with me.  I have met all of these amazing people since I have been in Rochester I feel like we need to have a going away party when it finally is time to go.  I don't have a lot to report for capri today, the nurse said she is doing great and just working on eating.  They weren't going to make any changes today just keep healing.  hoping that I can go and see her tomorrow.

Thursday, February 13, 2014

new friends

Hey princess, mommy is pretty dang proud of you today.  Capri is continuing to get better.  She drank about half of her feeds through a bottle today and had the rest through her feeding tube.  The doctors are very pleased with her progress and want to watch her over the next two weeks to try and finish getting her lungs to heal.  She also needs to still pass a swallow test before she can have real food or drink out of a bottle that doesn't have a slow flow nipple.  Her ENT doctors want to go down and look at her erosion to see how it is healing but the cardiologist doesn't want them to because it will put strain on her already very fragile heart.  She is taking lots of steps in the right direction and I am so happy that we are finally starting to discuss go home dates. 

I spent the morning with some moms who live in Rochester making valentines cookies.  It was nice to feel somewhat normal and be around other people.  I don't feel alone out here anymore.  I have my friends who keep me fed and bring me treats.  One who is even going to color my hair for me tomorrow.  Then I have my heart mom friends.  I have met the most wonderful mom Amanda.  Her son has the same heart problem that Capri has and went in for surgery on Tuesday.  He is showing Capri up and is already off the ventilator.  Im sure he is going to be up and playing tomorrow and will probably beat us out of the hospital.. He has such amazing parents and I am so happy for them.  There is another ebsteins mom that is handing over her son tomorrow morning for surgery with Dr. Dearani.  His is a very complex case just like Capri so if you could send little Nathan good vibes tomorrow to have a successful surgery I sure would appreciate it. I am so grateful to have met all of these other heart moms during our journey.  I have amazing friends and bar nun the best best friend you could ever ask for but people who haven't been through the trauma of almost losing there child don't understand to the full extent of what it feels like to go through this.  Having these other moms who I barely know give me this sense of comfort to know that everything is gonna be alright and I'm not alone.  I love all of them!

I have to check out of the Ronald McDonald house on Sunday because they are doing renovations and shutting down half of the center.  I will be moving into the best western.  I am sad to leave all of the families and all of the wonderful amenities but I am a little excited to be able to go back to a place that has a gym so I can continue to run at night.  I am hoping that it will be a short stay and Capri and I can get back to our family soon. 

Wednesday, February 12, 2014

surrounded by postive energy

 It is amazing how quickly your world can change while you are in the hospital.  Yesterday Capris doctors were talking about having to re intubate her and that she was not doing so well and that they were worried.  Today was one good thing after the next.  I love days like today.

When I came in this morning the first thing I noticed was her feeding tube had been placed.  I apparently squeeled with excitement and told the room full of doctors how excited I was.  They all started laughing and said "well that's a first.  Most moms start crying when they see we have placed a feeding tube."  This means my baby gets to eat though.  My tiny 9 pound 7 month old gets to have calories!  This is wonderful news to me. 

Next we did ultra sounds on her legs to see how her blood clots where doing.  She has been on blood thinners for about 3 weeks so we were hoping that at least one would be cleared up.  This afternoon we got the results back that both clots were gone!  Her blood is flowing great and we can now ween her off the heprin!

We also decided today to finish weening her off of her pain meds.  By tomorrow the only iv meds left will be a small blood thinner because she still has a central line and IV fluid to help her with her nutrients until she can get to full feeds.

We also gave her a bottle with formula for the first time today.  She is on Enfa port because of the chylus leak (when they knicked her lymphatic system during surgery).  They warned us that it is horrible tasting and that most babies wont eat it.  Well she drank it down with no problems.  We will slowly go up over the next two weeks and try to get her back up to drinking 24 ounces a day.

I posted a thing on facebook today asking my friends to write something positive that had happened to them during the day so I could fill my "space" with positive energy.  Everyone's responses where so great and it was so fun to read.  here are some of my favorites:

Brittany Briggs Hadeyn likes to think he is big and walks himself into his school, he usually gets caught up talking to friends but today for the first time he turned around and waved goodbye, had me smiling from ear to ear
 
 
 
 
 

Tuesday, February 11, 2014

lungs

Oh Capri sweet baby...
This morning both of Capris lungs have collapsed again.  (well technically the right one has never actually fully inflated)   No one can figure out why she is struggling so much to keep them inflated.  She is skin and bones weighing in at a whopping  9 pounds 3 ounces, she has no more fluid to give so why wont her lungs stay up?  Despite all of this she did remarkably well today.  We spent most of the day laying in the recliner watching law and order and writing thank you cards. 
Im really not a fan of the doctor we have this week.  Every time I talk to her she is so negative and keeps reminding me that we are inches away from needing a trachea.  I am aware.. you don't need to remind me over and over.  Capri is going to show you, shes tough.. shes gonna make it.  We are gonna be okay.

We also discussed a Gtube today.  We arnt there yet but it is a possibility.  A Gtube is a surgical procedure where she gets a tube put in her belly with a cap covering it.  When she needs to eat we just attach the feeding machine and give her nutrients that way.  They need her to eat but are worried that putting a feeding tube down her throat could compromise her breathing at this point.  However surgery could be a big set back because she will need to go back on the ventilator, they will need to give her lots of fluid which she struggles getting rid of.  They will have to sedate her which she again, struggles with.  We are going to give her until Friday to show us that she can get better and hopefully heal then decide what the next step is over the weekend. 

Monday, February 10, 2014

A weekend away

A weekend away from electronics.  Playing with my babies and spending time with my husband..  It was just what I needed to know that I was strong enough to keep going and everything was going to be alright.


 We had so much fun at the mall of america.  We spent the whole day riding every ride and letting the kids do whatever they wanted!  My mom was with Capri so i knew she was in good hands and I let myself just be in the moment and forget about all of the other worries.  Ashton and I did a ropes course together where he climbed 4 stories and walked across tiny boards with no fear.  I was so proud of him as i was walking behind him trying to get my legs to stop shaking so i wouldn't fall. Baylee wanted to go to barbie land all day but when it was finally time to go we found out it doesn't open up until the following week.  she kept throwing pennies in the wishing pond wishing for the store to open so she could go try on barbies clothes and see the dream house :( Instead we found the disney store and she bought 2 princess barbies and tried on princesses dresses.
 We stayed up late everynight watching youtube videos and singing "call me maybe" and "carry on" over and over again.  We talked about when mom was going to come home and where they were going to be staying for the next few weeks.  Baylee asked if we could just fly home tonight so she could sleep in her bed.  Ashton kept asking if we could please just get capri and bring her with us.  It was so nice to be together but a big hole was still there.  We need our baby C.

Sorry for the sideways picture, i cant figure out how to turn it.. thats what my IT husband is for.  Today it is back to reality.  Mike left Rochester at 12 with a heavy heart.  I get so caught up in my own stress that i forget how hard this is on  him.  He comes home to an empty house everynight.  He needs to be at work to concentrate and make sure that he is getting all of his tasks done while still worrying about his baby girl.  It was so great to have him out here even if it was only for a few days.  Daddys make everything better.   My mom and the kids left around 3 and now it is just me and Capri.  She did a swallow study today to see if we could start feeding her, unfortunatly though, she failed.  As she drank the liquid her vocal cords didnt close and the fluid went into her lung. She didnt cough or move or do anything.  If we gave her a regular bottle she would aspirate and we wouldnt know until it was too late.

The ICU doctor came in to discuss a plan.  "Capri is just barely treading water.  She is in no way out of the woods, We are still at a point where she could be re-intubated and still need a trachea"  I hate mondays because its a new doctor and they are just learning about capris case. Monday doctors always seem more worried about her stability.  After a few days they seem to be less concerned.  I hope that this is the case this week.
Because of both of these issues we will still be in Rochester for awhile.  She is thinking the end of February to the beginning of march.  We are going to be a fourth of the way into the new year and have only spent 4 days at home.  I hope that this week she will rest and her vocal cord will heal and next week she will have a much more positive outlook.
With all of this i am so grateful that these setbacks are all temporary.  We have not had to deal with anything that is going to be a permanent problem.  She eventually will heal.  It is taking a lot longer than we had hoped but this isnt something we will need to deal with for her entire life.  We can do this!