Friday, January 31, 2014

broken record

No extubation today.  No happy wonderful thoughts.  A lot of crying and feeling alone.  I feel like a broken record. Everyday is the same.  Wake up with hopes of good news and progress only to get to the hospital to see everything is the same or worse.  I am loosing hope.  I don't know if my daughter is ever going to get better.

Her X-rays looked worse today. She has fluid everywhere.  They cant get rid of the fluid without stopping her formula.  They cant stop the formula because she is already so malnourished from them withholding food the last several weeks that her body wont fight to breathe without food.  Her hemoglobin is low again so she needs a blood transfusion.  Her oxygen wont stay in the 90s.  She wont have any bowel movements because she is on so much sedation meeds her bowlels aren't working.  When we lower the sedation meds she is in pain and tries to pull the breathing tube out.  Her heart meeds are keeping her out of SVT but they are slowing her heart down so much that she is sitting at 70 beats per minute so she has to use a pace maker to keep her above 100.  If we lower the meds her heart will beat where it is supposed to but then she will continue to go into SVT.  Everything is so up and down and there is no happy medium.  It is so overwhelming to think about every thing that she still needs to overcome before we go home.

So im back in my room to fall asleep and hope for a better day tomorrow.  

Thursday, January 30, 2014

my new "me"

Tomorrow is a big day.  It is the last time we will extubate Capri.  We are hoping she will do well off of it and be able to breathe on her own.  If she cant they will take her back to the OR to place a trach.  I still cant talk about it without crying but i have been talking.  The more i say "trach" the easier it gets.  No matter what, we are going to be okay.  But it will be so much better if we can avoid that pesky thing.

I am doing better today.  Im still not normal but i am quickly discovering that i will never be "normal" again.  This is my new normal.  Always worried something is going to happen to the kids, much more aware of my surroundings and to always say i love you at the end of every conversation.  to kiss my baby before i leave the room, always the thought in the back of my head "will this be the last time i see you?  I kiss you? "  As hard as this new me is, i feel like its a better me.  I care about the right things now, i don't get as caught up in the petty stuff.  My family truly is the most important thing in my life and its okay to put everything else second.


Sitting, waiting, wondering what the day will bring. Trying to stay busy the entire day is my goal and it is wearing on me as the days go on. Being 1,279 miles from my daughter for the past 8 days has been harrowing to say the least. Every morning that my alarm goes off, I wonder if this day will be any different than the days prior. Will I receive news of things are changing to Capri's advantage, or will I receive news that my days will remain the same even longer, or will I receive no news at all?

As the day goes on, I feel like Bill Murray in Ground Hog day. The routine is the same, the weather is the same, the update texts are the same, the only thing that really changes from day to day is how much I miss my Wife and kids. I want to be there with them, but I know that is really not an option to put everything on hold and risk the trip since progress at the moment is inactive. I want to be there, I feel as though I need to be there, but I know that I can't and that makes it onerous.

With the TV turned off, I can actually hear the sound of silence and it is something I have never paid attention to before. No kids playing, laughing, and screaming in their rooms, Pans and cookware being moved in the kitchen, Monitors beeping, and oxygen concentrators running in the background, just silence. I can hear the wind blowing around outside, rain dripping down the glass other fine detailed sounds I have not really heard in years. So I fill my time by checking off items from my "Honey Do" list that has remained inert until now. The accomplishment of these items does make it feel like things are in fact moving forward and passes the time and that's good, after all that is my goal.  I have spent time discovering new entertainment such as "The Blacklist" and "Person of Interest" and I must say, those shows are exceptional.

But at the end of the day I find myself in the same place, missing the same people, and wondering how long this will continue. While at the same time I realize that as long as I am feeling like Bill Murray (with a better hairline) in groundhog day, Capri is not losing speed, or going downhill. That she is still fighting day after day and refusing to quite on us. She may not be declared the winner by KO, TKO, or unanimous decision, but she is still standing and fighting and that is all I could ever ask for. When the day is all over, it is that final thought that makes the day worth it!

Tuesday, January 28, 2014


Im not sure i can even right this blog tonight and to be completely honest, i just want to curl up in a ball and cry myself to sleep.

Capris surgeon came in tonight to talk about putting in a trach.  A trach is where they will surgically open her neck and place a tube down her throat.  She will breathe out of that instead of her mouth and nose.  He told me that this was something that was most likely going to happen and that i needed to be prepared.  I tried so hard to choke back the tears but was unsuccessful.  He told me it was going to be okay and that it would just be temporary, hopefully only a few months.  He could see how distraught i was so he said we would give her a few more days and that maybe she would surprise us and her lungs would open up on their own and she would be okay.

Honestly I don't know a lot about trachs.  My first reaction was a very superficial one.  I don't want her to look like that.  I don't want her to have a tube sticking out of her throat i want her to be normal, its not fair! People are going to stare.  I know that this is so silly and the most important thing is that she is going to be okay but she's been through so much. why do we have to put her through this too?

Then i got back to the hotel and started doing research... I cant do this.  This is to much for me.. i am not strong enough for this.  Most babies cant make noise (except for occasional squeaks).  That baby cry in the middle of the night that most moms dread.. i want it so bad.  I want to hear her cry.  I haven't heard her cry in almost a month, now you are telling me she will be almost one before i get to hear it again??  When i give her a bath if i get water in the tube i could drown her.  When I feed her if i don't hold her the right way she could aspirate.  I already have to deal with the fact that SVT can compromise her breathing and be life threatening, now you are telling me that our everyday activities are life and death if i don't do it right?

I cant stop crying.  Im telling myself that its going to be okay and we are going to figure it out but the tears just keep coming.  I am all alone out here.  I have to be strong and be their for Capri.  I need to talk to A and B and not let them know that anything is wrong.  i need to be strong for mike so he can concentrate on work.  Why wont these tears stop? I cant breathe, i am making myself sick.  I need to sleep.  Tomorrow will be a better day.  Her lungs are going to open up and all of this fear of a trach will melt away.  Please let this be a bad dream.  Open those lungs baby girl, please...

Monday, January 27, 2014


I don't have much to report on our baby girl tonight.  Her heart is not functioning as well as we had hoped by now so we are trying to figure out the right dose of her lasix.  I met with the blood doctor again today and he said she would need to take blood thinners for around 3 months.  Unfortunatly babys don't do very well with oral blood thinners so we either stay at the hospital  till the clots clear or we take her home and give her shots in her groin 2 times a day.   She also had several episodes of SVT that they are using a pace maker to kick her out of it for now.

Today I am so thankful.  Thankful for all of the wonderful people in our lives who have helped us in so many ways.  From the prayers being said all across the world, to my 5,000-10,000 views everyday on my blog.  My high school friends who have gone above and beyond starting fundraisers to help us with the mounting costs of hotels, food, taxi cabs etc. All of the Amazing people who have been bringing me dinners at night so i don't have to eat cafeteria food 3 times a day.  the cards and gift packages i have received and my kids have received in wyoming to let them know that people are thinking about them too.  To my new "heart family"  the moms who check in on me everyday who have been here and had that fear of losing their child.  I could not do this without them.   They help me to feel not so alone.  I am thankful for my husband who is at home working and taking care of the house.  He had to go grocery shopping (which i don't think he has done in 6 years), im pretty sure he came home with chips, energy drinks and jerky lol.  I know this is so hard on him being so far away from his family.  To my family who have put there life on hold to take care of my kiddos and help them to feel at home.  My cousin in law (is that even a word?) who let them come to her preschool and is keeping them for a few days while my parents go to state special olympics.

How did i get so lucky?  I have so many people who truly care about my family and hurt when we hurt.  I am sure i have forgot people and i know that i will never be able to express to all of you how much stress you have taken off of us by being there and caring.

I hope for good news tomorrow.  Well lets be honest i hope for good news everyday :)  She'll get there.. if i say it enough eventually i will believe it!

Sunday, January 26, 2014

i choose to be okay

I got in the cab this morning to head to the hospital and had a very unhappy cabee.  He started the ride off by telling me how upset he was that he had to come pick me up and that his boss was making him come just to piss him off.  Then he told me today was supposed to be his day off and that he was hungover as f***... hmmmm well buddy let me tell ya, i am just as unhappy that you were the one to pick me up :)
It did start my day off with a laugh though which was nice.  I haven't laughed since mike left.  When I got to the room  the blood doctor was in looking over capris scans.  He told me that they were trying to find the right treatment because she was tricky.  Both her venous artery and her artillery system had clots.   the venous artery takes blood back to the heart and if the clot breaks off it could go to the heart and get stuck or go into her lungs and cause a pulmonary embolism which could be fatal.  The artillery vein brings blood down to her foot and it has been grey cool to the touch and difficult to find a pulse since surgery which worse case they could have to amputate it.  Those are both worse case scenarios though and putting her on blood thinners will hopefully avoid both of those things.  The tricky part about using blood thinners though is she just had major open heart surgery and her blood ids to clo around the suchers to heal the tricuspid valves.  If the medicine eats away at those clots it could cause internal bleeding.  So what do you we do?  Neither option is a good one.  We ended up deciding the best route is to slowly increase her blood thinner and draw blood every few hours to make sure there wasn't to much in her system.  The bad side of drawing blood that often is her body cant make enough to replenish what we are taking out so she will need to have blood transfusions every few days.

Capri also started going back into SVT today.  She has had 3 episodes but we were able to convert her without using medicine so the hope is that she will be controlled with medication and will be able to stay out of the hospital once we get back to utah.

On a good note her X-rays looked great today.  the left lung has re-inflated and the right lung is starting to open up!  We want to keep her on the breathing machine for a few more days to make sure she is ready and then will transition her to the CPAP and then eventually to a cannula and then room air.  Hopefully taking things slowly will give us a better result and we will be closer to coming home.

I have hope today.  Hope that things are going to be okay.  Yesterday I didn't know if i was ever going to get to bring my baby home.  I couldn't get the thought out of my head that what if Mike and the kids never see Capri alive again?  How can we do this?  I had thoughts flood my head of how do I get on the plane and go home alone?  How am i going to pack up all of her things and not bring her with me.  So many feelings that i try to push down deep inside surfaced yesterday and i couldn't push them away.    I came back to the hotel talked to A and B and drifted off into my medicaided sleep :) When I woke up i decided that i wasn't going to get bogged down with the scary what ifs.  I will take it day by day, flood Facebook with lots of pictures and be happy.  Whatever is going to happen is going to happen regardless if i am happy sad or in between so i choose to be happy.  I choose to believe that everything is going to be alright and that i will be strong enough to be away from the rest of my family and that A and B will someday understand why i had to stay here and not be with them.

Saturday, January 25, 2014

just rest

3 weeks of being in the hospital (almost 2 weeks at mayo) and we are no closer to going home than we were on day 1.  When I got to the hospital this morning they had put Capri back on the breathing machine because she could no longer do it on her own.   We spent the morning upping her sedation and pain meeds every 15 minutes. She could not settle down her poor tiny body would just twitch.  It is so hard to watch her like this.  She is so helpless i just want to scoop her up and tell her its all going to be okay.  Her body was burning up but her toes were freezing.  I asked the doctor why her feet were still struggling to get blood, i thought the surgery was supposed to fix that.  He agreed that it was abnormal so he ordered an ultra sound.  We discovered both legs have blood clots in her groin area from the central lines.  She is already on baby aspirin and heparin (a blood thinner) so we upped the dosage and will meet with a hematologist on monday.  Her temperature had spiked to 103 even after the tylonel.  Her body is shutting down.  She is giving up.  Please fight baby girl.  We aren't ready for you to leave yet.  We have to many memories to make with you.  You need to take those breaths and your lungs need to heal.  You can do this.  We can do this.  We are going to be okay.  We are going to survive this, you just rest your pretty little head and heal. We will take care of the breathing and feeding and all of the other work for you.  You just heal.

Friday, January 24, 2014

How long will we be here?

Capri started out having a great day.  We snuggled and played and sang songs with the musical therapist.  She fell asleep in my arms as i rocked her back and forth enjoying the silence.  The nurse decided to do vitals and turned on the blood pressure cuff.  Capri woke up and started to make this junky sound as she was breathing.  I patted her back and rubbed her feet trying to get her to cough but it didn't help.  The respiratory therapist came in to give her a breathing treatment but she just kept getting more and more blue.  I set her back in her crib and watched her oxygen drop into the low 60s.  Capri became lifeless as the Respitory therapist picked her up and held the oxygen mask to her face.  her arms hung to the floor and her head fell back.  Not again.. please not again.  Drs flooded the room and were all talking at once.  one held her jaw forward and tilted her head back so the oxygen could get in.  They bagged her until she was at 100% then quickly put on the CPAP.  Her heart was racing and we thought she may be in SVT so we called the EP doctors.  Her rhythm looked okay she was just in distress so she her heart was working harder.
Slowly her color came back and her numbers leveled out into the 90s.  Both of her lungs have collapsed again.  Hopefully the CPAP will push enough air into her lungs to inflate them and we will be able to get her to cough and get rid of the fluid that is on them.

The rest of the day was quiet.  I couldn't hold her because she was so unstable.  So i held her hand and showed her pictures and videos of A and B. Right before i left Dr. Dearani came in the room to check on miss Capri.  He looked at her chest tube to decide if we could take it out this weekend.  Unfortunatly he decided that she was knicked during surgery and is now leaking fat from her lymphatic system into her chest.  On monday they will put her on a no fat formula via her feeding tube and will need to spend the next few weeks being closely monitored to hopefully avoid another surgery.  We have no idea of when we will be able to leave Minnesota but our goal is to be home by Feb 9th because it will be As first birthday.
I am so grateful for all of the wonderful people in my life who have been calling, texting and sending packages to make this stay easier.  Please don't be offended if I don't answer the phone, its hard to answer the phone and hear the person on the other line be sad.  I don't want to make other people sad, and sometimes talking just makes me even more sad.  Texting is easier, its less emotional.  It doesn't mean i don't appreciate you though.  I do.  i really really do.

Thursday, January 23, 2014

cautiously optimistic

Im afraid to say today was a good day but... today was a good day :) We took the breathing tube back out and took out one of her central lines.  She also got to eat out of a bottle for the first time in 2 weeks. Please let this be real and let her really be getting better.  She looks like my normal skinny happy baby. We were finally able to give her a bottle as well.  She drank it with no problems which is such a relief.  I have been worried that the feeding tube was going to set us back and she was going to forget how to eat.

We were also able to weigh her today,  she is 9 pounds 4 ounces.  She lost 11 precious ounces in the last 3 weeks.  So either the section of her heart they removed weighed 3/4 a pound or she desperately needs food :)
I am laying in bed tonight hoping that this isn't a fluke and she really is on the mend.  a few more days and her lung will inflate. a few days after that and the knick in her lymphatic system will heal a few more days after that we will get to come home.  please oh please let this be the case.  I miss my family.  I miss my own bed and more then anything i miss cuddling with my 3 beautiful children!

Wednesday, January 22, 2014

1 step forward 3 steps back

Good days and Bad days.
                                                  It takes time to heal.
                                                                                           Good things are worth the wait.
 People keep telling me these things but im starting to wonder when our little one is going to catch a break.

I walked into the ICU this morning with my coffee in hand ready to have a great day cuddling with my baby.  Unfortunatly i was stopped at the door by the doctor who told me I couldn't go in the room.  Capri had a rough morning and quit breathing.  She turned blue and after several attempts of bagging her and trying to get her to breathe on her own they finally had to put the breathing tube back in.

I could feel my chest get tight and it got hard to breathe.  Is she okay?  Did you have to perform CPR? Why cant she breathe? After what felt like an eternity they let me in the room so i could see her. She was paralyzed but her eyes were open.  They were darting back and forth looking at everyone in the room but her body was still.  How scary must this be for her.  She can hear and see whats going on but she cant cry or move to let people know how she feels.  More doctors came into the room to do an echo and told me to be prepared that we may need to take her back to the OR.  Everything checked out ok though and they finally decided it was just because she had a lot of secretions in her lungs and it just closed off her airway.

I walked around the hospital a lot today.  i couldn't catch my breath.  I know that she is okay and that set backs happen but seeing her looking around today not able to move just broke my heart.  I want to help her and comfort her and tell her that its going to be okay.  i want to hold her and kiss her and make her feel better.  All i can do though is hold her hand and talk.  I have no idea if she is coherent enough to even know that its my voice but its all i have left.  The very little control i have is being able to sing to her and let her know i am by her side.

Tuesday, January 21, 2014

a sigh of relief

Yesterday was a hard day.  We took Capris breathing tube out which was amazing but we spent the rest of the day watching her struggle to breathe.  Seeing your baby gasp for breaths is one of the hardest things i have ever done.  Her chest would suck in and then would wheeze as she exhaled.  Her SATS where all over the place and she cried all day in pain.  Her blood pressure had spiked through the roof because of the pain and her blood levels were way to low so she had to have a blood transfusion.  It just seemed like it was one thing after another and she couldnt catch a break. At the end of the day they told me her chest tube was leaking a milky white substance that meant she most likely was knicked at some point during the surgery and would need to stay in the hospital for another few weeks to try and fix it without having to re open her chest.  I watched how nervous our nurse was and how she would smile when she saw me looking at her trying to act like things were okay.

This morning when we got to the hospital she had a geniune smile and said that Capri was doing much better.  She was stable.  She said she woke up this morning in a panic wondering if Capri was okay.  Thats how you know you have an amazing nurse.  Someone who truly cares about your baby.  I spent the night in a fog wondering when we were going to have good news.  Why does she have to struggle so much?  why cant she just be okay?

Most of the morning was spent doing tests, xrays and trying to get her lung to re-inflate.  Mike and I walked around the hospital so i would be more comfortable here after he leaves.  I found this amazing meditation room with a fountain in the middle.  It was so peaceful and warm and quite.  I could breathe in there.  I think i will spend time in there everyday to help relax. This afternoon I got to hold Capri.  She fell asleep as soon as our nurse placed her in my arms and stayed asleep for 2 hours.  This is the longest she has slept since we have taken her off the sedation medication.  She is healing.  She is getting better.  Slowly but surely she is going to be okay.  Her swelling is going down a little more everyday, her breathing is more regular and she only cries when she is hungry.

Tonight is the last night that Mike is with me.  Tomorrow he has to go home and get back to his normal life.  His work has been so amazing letting him take a week and a half off to be with us and help take care of his daughter.  Im going to miss him so much.  Everything is easier when he is around.  He can always find the positive in any situation.  When i get into my fog and feel like there is no getting out he holds my hand and reminds me of the positive things and that things are going to be okay.  I cant wait until we are all home back under one roof arguing about which show to watch before bedtime!

Monday, January 20, 2014

a step forward

Woke up this morning to a snowy day in good old Minnesota. The good thing about the snow in this state, is it seems to keep it fairly warmer than average, it was a burning 26 degrees. Word around the hospital is that tomorrow is going to be below zero somewhere.

Went to see Capri this morning and as soon as I walked in the door, her eyes were open and she was just looking around the room. I was a pretty good sight to see. I then noticed that her breathing tube had been removed!!!! That was a GREAT sight. She is still on the CPAP machine, due to her collapsed lung. The staff is still trying to figure out just what is causing that at the moment, only time will tell, hopefully it is a story with a happy ending. As they examined her drainage, they noticed that it was a different color, and they started to look into that. What they believe is that when they were in the O.R. the blade might have mad e a small cut in something that I can't spell or pronounce, but it is causing problems with her release date. They inform us that this should heal itself with a no fat diet but could take up to 10 weeks to completely heal. I am hoping this is the case, as possible O.R. trip might be needed.

As the day wore on Capri started to get more angry, and it was hard to tell it is was due to hunger, or pain. As I stood over her and held her hand, she looked so upset and not to mention really scared. It was pretty much one of the hardest things I have had to sit and watch. My daughter laying there, clinching her fists, trying to try but only a small squeal was emitted due to the irritation from the breathing tube. As she looks up at me, I can tell that she has not idea what is going on, and why we are doing this to her, but one thing is clear, and that is that she is hurting, and I I just have to sit there and watch it, and do nothing to help.

Kendra and I got to hold Capri today for this first time in almost 2 weeks. It was the moment of the day and made my whole week. Getting to hold her in my arms, and see her looking up at me like good old times. The only thing that would have made it better, is if I could have gotten her to give me one of her famous smiles, I tried and tried but she was having none of it. Kendra got to hold her as well and it was a wonderful sight to see once again. She seemed to be very comfortable while we were holding her so at least we were able to provide that to her if nothing else.

I have a feeling that tomorrow is going to be a good day. I am going to walk in the room, and she will be watching more episodes of gold Rush, her stats will be perfect, and they will have her discharge papers filled out waiting for a signature. OK, well I know I have the Gold Rush part right.

Sunday, January 19, 2014

oh Capri

Today a friend reminded me of the song that we named Capri after ..

"And oh when she'll open her eyes,
There'll be no surprise
That she'll grow to be
So beautifully
Just like her mother
That's carrying.
Oh, Capri, She's beauty
There is an angel growin' peacefully.
Oh, Capri, Sweet baby.
And things will be hard at times...
but I've learned to try just listening
Oh, Capri, Sweet Baby.
Oh, Capri, you're beauty
Just like your mother
That's carrying...Oh, Capri."
Its been so hard waiting for Capri to open her eyes and to get better.  I read these lyrics and just began to cry.  Things are hard right now.  Harder then they have ever been.   I need to take a breath and remember that things are going to be okay, day after day she is going to get better.  We are going to be okay.
The kids flew home with my parents today.  Baylee has a fever and doesn't feel good.  Ashton cried the whole way to the taxi and repeatedly told me that he promised to be good and he didn't need to go to the play area, he promised to just sit in Capris room quietly.  When I told him he would have so much more fun with grandma and grandpa he asked me why I loved Capri so much more than him or bay.  I just want to be their for all of them.  I want to hold each of them and tell them that its going to be okay.  When does this helpless feeling go away? When will things feel normal again?

Saturday, January 18, 2014


I hate this numb feeling.  I feel like I am in slow motion while everyone else is in fast forward.  Capris right lung keeps collapsing and until they can get her to lose more fluid its going to keep happening.  We were supposed to take her breathing tube out Friday, then Saturday, now hopefully tomorrow.  I just feel like we are at a stand still and I know that I need to be patient and she just had a MAJOR surgery and things take time but today I just feel hopeless.  I want her to wake up and to heal and to get better.  Its so hard being in this limbo never knowing what kind of day she is going to have.  I don't think I can handle any more stress. I need you to wake up baby.  I want to see you awake and kiss you and hold you.  I want to get out of this fog and know that things are going to be okay.  I hate this feeling

Friday, January 17, 2014

she moved

Capri moved her hands!  She hasn't opened her eyes and she isn't making controlled movements but she is having muscle spasms and is trying to hold our finger when we put it under her fingers.  Its a small step but we know that her brain is working. 
We spent the day trying to get her to wake up, singing her songs kissing her fingers and toes and whispering in her ear.  Her body just needs a little more time.  Throughout the day she started trying to breathe over the ventilator so we are hoping that we might be able to try to take her breathing tube out in the morning.  We have been in the hospital for almost 2 weeks now but it feels like 2 months.  I cant believe all that has happened in two weeks. 

We only have 2 more days left before A and B leave to go stay in Wyoming with my parents.  The longest I have been away from them is a few days.  Being across the country from them is going to be so hard.  I love my big bear hugs from B and how A comes in my bed in the middle of the night to snuggle.  We left the hospital a little early tonight to spend time with them.  We found a place called bounce world where they got to jump on a million bounce houses and Mike and I got to ride a mechanical bill.  Having a sick child doesn't leave a lot of time for things like this.  Asking someone to babysit her is stressful for them and I spend the whole time worrying something is going to happen if I leave.  Being able to spend time with A and B and know that C is in a safe place I was able to relax for a few hours and forget about the stress we have been dealing with.  it was nice to feel like the world wasn't falling down on me.  We got back to the hotel and our world came right back.  I miss my baby.  I want to hold her and kiss her without worrying that im going to bump her breathing tube.  I want to lay with her at night and have her fall asleep in my arms. Get better baby girl we miss you.
                                       Precious baby please open those beautiful blue eyes
 Ashton lost his other front tooth today!  my little klutz who runs into walls.   :)  good thing hes so cute
                                               having some fun practicing his bull riding skills

Thursday, January 16, 2014

please wake up

This morning they closed up Capris chest before we arrived at the hospital.  Her heart is SO much smaller now and when you listen to it, it sounds like a different heart.  The Dr was listening and asked his residents to listen and hear the difference, then asked if I wanted to hear.  I told him yes but my stethoscope was in my diaper bag in the waiting room so could I use his?  He laughed and said you know you have a heart kid when a staple in your diaper bag is a stethoscope.  She is doing so good.  Her SATS are 100% her blood pressure is 85/55 heart rate 120s, everything looks great!  They talked about trying to take her off of her breathing tube tomorrow once the sedation wore off.  All day we have been waiting for the sedation to wear off but nothing is happening.  I've kissed her forehead and whispered in her ear.  Sang her songs and held her hand.  She has been off the paralitic for 30 hours now and she still hasn't moved.  I'm scared.  What if being shocked so many times and being on so many medications have done something to her brain?  What if she never wakes up?  We already did all of the hard stuff.  She made it through open heart surgery, why cant she wake up?  Please baby wake up.  Just do something, squeeze my finger.  Open an eye, something.  Let me know that you are still in there. Show me that you are okay.

Today is the last day my mother in law will be here.  She flys home tomorrow and everyone flys home on Sunday.  Then its just me and Capri.  I have never been away from A and B for this long.  I have no idea how long "this" is going to be.  Will I be here for 2 more weeks?  a month?  Being in this unknown is so difficult.  I just want someone to tell me "she will wake up on this day at this time,  we will take the tubes out on this day, she can eat on this day then you can go home on this day"  Why cant hospitals work like that?  Why don't they know all the answers?  This event has been a true test of my patience.  I hope tomorrow we will have more answers.  At least with the sedation.  I need to know that she is okay.
                Baby girl I miss this smiley face who is constantly moving and playing.  Please wake up..

Wednesday, January 15, 2014


Mike and I stayed up most of the night last night.  we both tossed and turned and realized sleep probably wasnt going to happen so we turned on TV and talked about the surgery.  I couldnt get the thought out of my head that "what if today is the last day im happy"  What if Capri doesnt make it through surgery?  Loosing a child changes you.  You are never the same person again.  The only downside to having this amazing family of heart moms is reading the heartache from the ones who lost their babies to soon. Every thought that came to my head brought me back to wondering if today would be the last day I saw my child alive.  That is such an aweful pit in your stomach kind of feeling.

We got to the hospital around 630 so we could hold Capris hand and take a few pictures.  We met her surgeon at 7 and were told they were taking her back right away.   Its here, there is no turning back now.  We followed them down to the operating room kissed her at the doors and watched her be wheeled away.  I have had several surgeries since Mike and I have been married.  Being the one on the table being wheeled away is way less scary then watching them take your child. 

We went back to the waiting room where our other kids were waiting with their grandmas and grandpa.  I cant cry in front of them.  I dont want them to be scared.  Deep breaths.  Everything is going to be okay, Deep breaths. We ate breakfast then went to the play area.  915 i got the first phone call from the OR.  They have her prepped and have just made the incision to cut her open.  950-She is on bypass and is stable. They are ready to start the procedure.  I took a walk with B to look at all of decor on the pediatric floor.  There are feet of different animals coming out of the ceiling.  I found that very strange and wasnt sure why they would do that but B thought that it was the funniest thing in the world and would laugh everytime we went underneath them.  Around 11 I started getting nervous that I hadnt heard any updates so Mike and I went up to the ICU to wait.  By 12 I got our last phone call.  "Dr. Dearani is just about finished with the cone. He would like to discuss how things went with you so please wait there for a nurse to bring you to the OR. "  I asked if she was doing good and if things went well.  The nurse just told me that it went OK and the doctor would tell me more.  I sat back down with a heavy heart knowing that something must have went wrong.  Finally the nurse came and took us downstairs.  I couldnt talk without crying so instead I stared at the wall and just told myself to breathe.  No matter what happens we are going to be okay.  We can get through this. 

Dr. Dearani came in smiling and told us the surgery went great.  They did the cone procedure and it didnt work quite like he had hoped so he had to do an additional procedure called the glenn. They also had to leave the chest open but would hopefully close it in the next day.  She was doing good though and did not have to go on ECMO which is huge.  They were pretty sure that her body would not be able to tollerate all of the stress of surgery and would need to be on life support for at least a few days. 

We spent the next few hours bringing family in to see her, taking pictures and talking with doctors.  The kids were so excited to see her and so glad that her heart wasnt broken anymore.  She was in SVT but her oxygen was at 100% which means she was tolerating it.  Later that night they converted her by turning up her temporary pace maker and as of now she is stable and doing great. 

Today was a long exhausting emotional day.  Once we knew she was okay this weight was just lifted off of me and the world was okay again.  Our baby is going to be okay.  We are going to be okay.

Tuesday, January 14, 2014

Its not fair

  I woke up this morning when it was still dark outside.  Everyone was sound asleep so i quickly got ready and headed to the hospital by myself.  Its nice to be in the silence.  I can process everything that is happening to our family.  I take deep breaths the whole way to the hospital.  That first look at Capri still takes my breath away.  A few days ago she was playing and smiling.  Now she is so swollen her eyes look a bug.  she is paralized which is a horrible thing to ever see happen to your child.  She looks like she is already gone.  I can not wait until i can hold her again.  For her to squirm around and cry and laugh and do everything that a 6 month old should be doing.  
Walking through the cardiac unit, almost everyone in there is 80+.  Capri is the only baby and there is one 4 year old named Evan in the room next door waiting for a new heart. These 2 kids don't deserve to be here.  Everyone else here has lived there lives.  Their hearts worked for them for this long, it is expected to have some bumps in the road at that point.  Kids should not be here.  they should be outside playing with their friends without a care in the world.  Its not fair.  

Over the last week I have gotten bitter.  I am trying so hard to stay positive but i read things on Facebook that says "my poor baby has a runny nose and a cough, its so hard to see him sick i hate this"  things that i have written myself probably 100 times.  But now all i can think is you have no idea what hard is.  You should be so grateful that your kid just has a runny nose..  You should be holding him tight taking care of him happy that you are in your home and not in a hospital.  This last 6 months have changed me.  I have seen a world that no one should ever have to endure.  I have met so many amazing families in the hospital that don't deserve to be here.  Why did we get chosen to have to go through this?

Capri was in SVT for almost 24 hours before they decided that she couldn't handle it anymore and it was time to convert her.  We tried the adenosine medicine first.  I told the doctors that this medicine never works.  it doesn't even slow her heart down let alone stop it.  They didn't believe me and said let our doctors try to make sure they were doing it correctly.  They tried and nothing.  they tried again.. nothing.  No one ever believes me :)  they discussed why this wouldn't work and that she possibly wasn't in svt.  then one doctor said " her right atrium is SO large, maybe the medication is just getting diluted and she needs a really large dose.  The text book answer is you don't use more than .4mg for someone her size.  That is the max.  They decided to try 1mg.  that is more than twice of what we have ever tried.   Dr. Pilcher was worried .4 would stop her heart to long, what is 1mg going to do??  Well, it worked.  It kicked her out of SVT and we didn't have to shock her.  Thank God we didn't have to shock her.  

We spent the rest of the day coming in and out of her room, taking our other children to explore the hospital and making phone calls to family to keep them updated.  

Tommorow is the day.  The day they will fix Capris heart.  I am scared to death that there is going to be complications but so anxious for my baby to get better again so i can hold her in my arms.  I miss my baby girl.  I miss our family being whole.  We are broken right now.

Side note:  We talked to the kids today about capris surgery and asked if they had any questions or if they were worried about anything.  Ashton told me that he was very worried that the glue wouldn't stick.  When I asked him what he meant he said " well when the doctor fixes her cracked heart, what if the glue doesn't stick?  Then it will just crack back open and she will need surgery again?"  In his mind capris "broken heart" is the cracked heart you see in pictures.  Just glue it back together and all is good. If kids ran the world life would be so much more simple.

Monday, January 13, 2014

Delta and our travels

When we found out that Capri would need surgery and started realizing how much all of this was going to cost us i reached out to one of my friends who works for delta.  He gave me an email to someone in the corporate office and said maybe she could help.  I emailed the CEO and the contact he gave us who has very much become our guardian angel.  Within an hour i had gotten a phone call saying that they wanted to help us out and when I had a date for surgery to just let them know and they would help us.  I took that as they would book our tickets and probably give us a 10% discount.  Secretly i was hoping for 1/2 off but new that wasn't likely.  When we had a date scheduled i emailed her and shortly after got a phone call from a reservationist letting me know that all of our tickets were booked flying first class and that they had taken care of the bill.  I sat in my car and cried.  We put together a fundraiser to help with bills and this trip but only raised enough to pay most of the medical bills.  Thinking about having to pay for flights for 5 people and a hotel for a month plus food and everything else that comes with being away from home was overwhelming.  When all of this happened last week and we found out we were being life flighted in 2 days i sent her an email to change our flights.  Not only did she do that but she booked tickets for my mother father brother and mother in law.  All free of charge.  How can you tell someone how grateful you are when they do something like this.  I am speechless.  Never in my wildest dreams did i think they would be willing to help us out this much.  We are so humbled by the support we have received.    The rest of this post will be written by my husband who flew on delta today.

We arrived at Salt Lake City International airport this morning at 6:50 a.m. for our flight to Minnesota. As we pulled up to the Delta passenger drop off location, Joyce (our personal Delta manager) was there  to assist us during our trip through the airport. Joyce pointed her finger, said a few words, and our what seemed like 1600 pounds of luggage was up ad away on it's way to the check in counter, I had not seen anything like it before. I was of to go park the vehicle and made my way back to the airport. As I entered the airport, I contacted Joyce and she met me near the security line to assist me along the way. The security line had about a 45 minute wait, however I was through to the other side in 6 minutes flat. As I walked with Joyce, we talked about Capri and this and that and before I knew it I was a our gate. the kids and grandmothers were hang breakfast where I wet to join them. As I got to the table, I saw a bag that the Delta team had put together for the trip for the kids. It has a hand written letter, a plush pink horse, a bunch of assorted goodies ad come activities for them to do during the flight. It was very thoughtful and it very much made my morning! After breakfast, Joyce came and got us and took us over to the gate. We were the first ones on the plane and had several minutes to get our kids settled in before the other passengers came onboard. The Delta crew onboard was very professional, and even gave the kids some pilot wings for them to keep. They pretty much thought that was he coolest thing in the world.

We landed in Minneapolis and before the kids and I got off the plane, we were greeted by another Delta staff, confirming I was Mr. Ware . Once we all were off the plane, we headed up the terminal to the airport. they loaded us onto a modified golf cart and took us across the airport to the "Delta Priority Club". We entered the priority club where there were snacks, drinks, wifi, private bathrooms, it looked just like a 5 star hotel. He then informed us that the main club was a bit busy, so they had a conference room reserved for us to hang out in during the layover. It was large, quiet, and just perfect for our trip. Bottled water, Ice, napkins, everything was ready for our use. During our layover, he stood outside the door and made sure that we had everything we needed and notified us when it was about time to leave for our flight. The time had come and we loaded back up on the Delta mobile and were off to the gate. Once there, they saw us all the way to the plane and made sure we had everything we needed for a smooth flight.

I travel on average 1.5-2 weeks a month and I can honestly say, I have never seen this kind of treatment during my travels. Delta really far exceeded anything I could have imagined. During our travels, I was having such a nice trip, it really took that "worry" off my mind and allowed me to focus on Capri's brother and sister today. I could not thank Delta enough for everything they did, it was truly something. It was a one of a kind trip from Ut to MN, ad it was provided by a one of a kind company.

Delta, your company is made up of some of the most amazing, professional, and compassionate employees in the industry, and I thank you for that, and everything else you did for us it was a perfect experience!


4am my internal alarm went off and was ready to go to the hospital.  I sat up and contemplated getting ready and just heading over to Capris room.  Then I looked at my two other kids sleeping so peacefully, I wanted to tell them goodbye and make sure they were ready to get on the plane.  So I tossed and turned until 530 when my alarm went off and it was time to get up.  When I got to her room, the hospital was so quite it was a little surreal.  I combed Capris hair and kissed her forehead.  I painted her hand and made some posters of her tiny hand.  I keep going in and out of panic attacks.  Everything is fine and i feel prepared and then my chest tightens and I cant breathe.  I cant believe we are lifeflighting my baby.  This little tiny 10 pound girl who was smiling and flirting with nurses a week ago is now paralyzed and sedated, swollen from all the IV fluid with a breathing tube down her throat.  She doesn't even look like the same baby.

  As i was looking at Capri trying not to break down i felt an arm around my shoulder and turned to see our doctor from earlier in the week when we were in the CSU.  Seeing her brought me to tears.  When we were up there she made me feel so calm.  She would come to the room and hold Capri and we would just sit and talk like we were old friends.  She made me laugh when all i wanted to do was cry.  every once in awhile you meet someone at the hospital that just makes such a difference in your life.  And it wasn't like she did anything specific that i can pin point, she just.. i don't know, made a horrible situation not so horrible.  I was so glad she came to check in on us.

Lifeflight arrived and spent a few hours making sure everything was perfect and hooked up just the way it was supposed to be.  Michelle was one of our lifeflight nurses that took Capri the day she was born, and even though i don't know her it helped me to feel at peace because she was familiar.   We got to the ambulance, made it about 5 blocks down the road and then had to turn around because her nitrix machine wasn't working.  Another hospital lifeflighted a working machine over via helicopter and we finally made it to the airport.

When i was told we were going on a lifeflight i pictured a private jet with reclining chairs, a little mini fridge by my seat and then the back of the plane with a nice padded bed like area for Capri.  Apparently my imagination had gotten the best of me :)  It was a cold metal plane with a bench and 3 seats facing each other.  after stuffing all of the bags behind a gate in the back we all squeezed in to our seats.  Capri had a monitor that was swinging back and forth above her head, on by her stomach and one at the end of her cot.  There was medical equipment everywhere and it never stopped alarming.  30 minutes into the flight i was watching her oxygen dip into the low 80s high 70s.  I must have drifted off because Michelle told me she would give me her coat so i could lay my head down and rest.  This is the first time I have felt like i could sleep so i accepted her offer and fell fast asleep.  15 minutes later i was jolted awake by alarms and a whistling air sound.  i shot up and saw Michelle taking Capri off the vent and started to hand bag her.  I looked at her monitor and she was in the 60s.  Her face was white.  This kept happening for the first 2 hours of the flight.  Finally they decided they needed to suction her (we try to avoid that because it puts her in SVT).  After releasing a lot of secretions her oxygen went into the 90s and stayed there for the rest of the flight.

We got to mayo our lifeflight team debriefed the doctors there and headed out.  As soon as they left i noticed her heart rate was 140 and told the doctor that this is usually her SVT rate.  He told me she was just upset and that it wasn't SVT.  I watched it for a few more minutes and told him that no it really was her SVT.  He called cardiology down to get there opinion and sure enough i was right.  Times like this i really hate being right.  They gave her extra heart meds and told me that shocking her is not going to solve the problem.  It was only a temporary fix that makes her heart worse every time they do it.  Surgery is what she needs and they don't want to risk hurting her heart anymore so as long as her blood pressure was okay they would leave her in it.  By the time I left the room a few hours later she was still in SVT.  This is so different from primary childrens.  They wanted her out after 15 minutes.

Tomorrow we will meet with Capris surgeon and hopefully schedule it for wednesday.  My body is on overload so i cant even process that surgery is so soon.  I need sleep.  I am hoping that being here will help me to relax and maybe sleep through the night.

Sunday, January 12, 2014

last day in SLC

Today has been a wave of emotions.  Seeing Capri lying on that bed, barely moving, swollen and uncomfortable tears at my heart.  I want to help her.  I want to hold her.  I cant do any of that right now, all i can do is sit helpless by herside and hold her hand.   This morning they had to take Capri off of her beta blocker.  That is what keeps her from going into SVT.  It also lowers her blood pressure though and today it became dangerously low.  We knew we were risking putting her back into SVT but there really wasnt another option.  her blood pressure was 30/15. That afternoon my wonderful best friend who has been here with me through everything, every emergency room trip, taking A and B last minute when they were sick and no one else would watch them so i could go to the hospital, driving back and forth to my house to pick things i forgot came to the hospital to visit Capri.   I couldnt do this without chelsy.  She helps make my life normal when it is anything but.  After a few minutes of her getting there Capri went into SVT.  They grabbed a bag of ice and put it over Capris face.  10 seconds later the nurse took it off and nothing.  Capri is so sedated she kicked her legs a bit but that was all the fight she had in her.  He suffocated her again and nothing.  I watched Chelsys eyes get big and look around wondering why in the world you would do this.   When that didnt work they placed the pacer through her nose and into her esophagus.  they shocked her once, then again, then again and again.  Nothing.  They started ordering things STAT.  EKG, ultra sound to make sure they were where they wlkere supposed to be. Blood gases ect.   We got pushed out of the room so they could quickly get what they needed.  I took her to the parent room so i could take a breath and try to stay calm.
when we came back everyone was gowning up which means the room needs to be sterile and I cant go back in.  They needed to place a second central line to monitor her blood pressure continuosly. Her veins have been poked so many times it is so hard to find a good one.  it took close to 30 minutes before they finally had it in.  Capri was going into an hour of being in SVT.  I am so grateful Chelsy was there to distract me and help keep me calm.  By the time they had gotten her back into a regular rythym they had shocked her over 12 times.  They sedated and paralized her so she wouldnt feel anything.  I dont know how she is still going.. in less then a week she has been shocked over 20 times.

Tonight I am packing and getting ready for the lifeflight.  I have no idea if i will be in minnesota for 3 weeks or 3 months.  How do you pack for that?  what do you bring?  what do i bring for her?  I am sick to my stomach.  I feel like someone is pushing on my chest and I cant breathe.  I cant believe we are here.  Its time.  Did i hold her enough?  Kiss her enough ?  Does she know how much we love her?  If we only get our baby for 6 months did we make those 6 months the best they could have been?  All of these questions are racing around in my head and im getting overwhelmed.  But i remind myself that whatever is going to happen is going to happen, whether i pray to a GOD to buddah to the moon and stars or rub special rocks.  Her destiny has already been decided now its in the doctors hands and all i can do is be there to hold her hand and make sure she doesnt feel alone.  I love this little girl so much!  She has to make it.   She has to be strong and get through this surgery.  I cant imagine this life without her.  Please little one hold on for a few more days.

Saturday, January 11, 2014

6 months old!

Friday Jan 10th.  Today is Capris 6 month birthday.  I never thought we would get to see this day.  We had a whole birthday party planned with Child life specialist.  We know that our reality is we may never get to celebrate a birthday with Capri.  So we decided early on that if she made it to 6 months we were going to have a celebration.  Being in the hospital was not exactly how we planned this day. We are going to make the best of it though.  The hospital cafeteria made us a rice krispy cake and we got capri sweeties (the sugar they give her to suck on her binky when they are drawing her blood).  Child life  brought us streamers and a balloon.  They gave us a bucket filled with poster boards, paint, markers, crayons and stickers.  We had bubbles and christmas presents that she still hadnt opened yet because she has been in the hospital so much.  We were going to bring the kids in and have a family party and take pictures with her.  Capri had a different plan however.  ..

My mom brought A and B to the hospital and dropped them off in the play area.  She came up to the ICU where my mother in law and sister in law where waiting.  We can only have 3 people back at a time so my mom and Jairan came with me first.  I explained her tubes and machines, what the doctors have told us so far and what the plan was for the future.  After awhile Jairan went out to get her son and let my mother in law in.  While they were there Capris oxygen dipped down.  After turning up the high flow and not getting any results they put her back on the CPAP.  She was slowly rising but still struggling.  The team decided it was best to put a breathing tube in because she was no longer able to compensate on her own. 

As the doctor started explaining the risks i started to feel sick.  She told me that in most cases there is a small risk of the child not dealing well with the breathing tube and stop breathing all together.  In some cases they can go into cardiac arrest.  With someone as medically fragile as Capri that risk went from being a rare side effect to a side effect that they were expecting.  She told me they would give her medicine to sedate her and another medication to paralize her.  I cant do this.  I cant be in here for this.  This is my limit.  I walked out of the room and started to cry.  People came to comfort me but i just wanted to be alone.  I needed a second to breathe.. a second to think.  I walked to the parents room to get a drink and take a few deep breaths.  When I came back they had given her the meds and were in the process of intubating her.  i stayed outside of the room but watched.  They had her on a back board incase she went into caridac arrest. the dr picked her up and tipped her head back.  Her arms flopped on the table and her head was limp.  She looked like she wasnt alive.  It was a horrible thing to see, I wish i had looked away.  He put the tube down her throat and the light that shows him where to go went dark. After a few frantic seconds they got him a new light and he finished placing the tube.  they started bagging her and watched her stomach inflate.  They were to far in.  He backed out a little and tried again.  Her stomach got even larger.  He backed out more.  Her oxygen finally started rising 67 ..70.75..80.. It was in the right place.  they would bag her up to 100% then put her on the ventilator and she would drop back down to the 70s.  bag her back up put her on the vent and she would go back down.  After several hours they finally decided the vent was bad and got a new machine.  Finally she stabalized. I came in to kiss her and tell her it was ok.  they lifted her up to take out the back board and put her blankets underneath her.  As they picked up my baby her arms and legs fell to the ground as if she was lifeless.  That paralization drug is horrible.  I hate it.  Later that night the Dr told me he made the mistake of watching them intubate his son when he was in the NICU and its a picture that is burned into his head.  As hard as he tries he cant forget that moment.  I wish he would have told me that before so I didnt watch.  Although after this week i think i will have several images burned into my head that I wish were not there.

This was not how we wanted to celebrate her half birthday.  This is the worst celebration ever.  It was 6pm by the time they got her stabalized.  At 630 no one is allowed in the rooms except the parents because the nurses are switching shifts.  I ran to the play room to get the kids so we could at least get a few pictures.  We took pictures, gave her kisses and told her everything was going to be okay.  If i say it out loud enough times it will be true right?  Its going to be okay...its going to be okay...

SVT and a purple baby

Thursday, December 9th
I woke up around 4am scared i had missed a call from the ICU.  After collecting my thoughts and being blinded from my phone light i realized i had no missed callls.  i spent the rest of the morning tossing and turning waiting for Mike to wake up and attempting to try to sleep a little bit longer.  finally it was 730 and Mike got up to say good morning to Capri and head off to work.
I spent the morning cuddling with Capri singing her songs and telling her how much I loved her.  Thursday is Parent lunch day in the ICU.  They provide lunch, teach a little lesson and then let the parents each talk about there child.  I love these days because i can meet the other parents and feel less alone.  Before I left I asked the nurse if we could suction out capris nose with the thought that maybe thats why her oxygen was going down.  We sucked quite a bit of secretions out then we watched her turn blue.  I held my breath and looked up at the monitor.. damnitt we put her into SVT.  She is so sensitive getting her even the slightest bit angry throws her into an episode.  The nurse called Dr. Pilcher to come and shock her.  While we waited we tried to use ice but had no luck.  When Dr. Pilcher arrived he came with a large machine.  It looked like it was from the 20s.  When he brought it into the room he asked the nurse for 12C batteries.  There was silence and then we all started laughing at the thought of having to use a machine to shock capri that used batteries because it was so old it didnt have a plug.  They put a wire down her nose and into her esophagus.  The machine was called a pacer.  Instead of shocking her through her chest that sent electrical waves through her entire body, this machine shocks her from the inside only affecting her heart.  They turned some dials waited for a beeping sound and pushed in some buttons. I really felt like i was in the 50s.  they shocked her and she just laid there sleeping.  Her body didnt move she didnt scream in pain. It also didnt work... They upped the voltage and tried again.  It worked.  She was okay.  After she was stable I went to the parent lunch in just in time for it to be over :)  I did meet to amazing families that I have been able to talk to everyday since then and follow there journeys as well.

Later that day Capri was really struggling with her oxygen.  She  kept dipping into the 70s and her lips would turn blue.  I was holding her and noticed she had turned very purple.  I told the nurse as I was putting her back in bed that something was wrong, she was purple.  Another nurse overheard me and grabbed the respitory therapist.  shortly there after they called the charge nurse and doctor.  Before i knew it the room was flooded with people.  her Nose was flairing and her chest was sucking in with every breath.  She couldnt breathe.  Everyone had there stethascopes listening to her chest.  I slowly backed up to the door of her room.  What is happening? Why cant she breathe?  They switched her from her regular oxygen to a high flow cannula.  when that didnt help they put her on a CPAP.  Xray came by and took a picture of her lungs.  They were concerned her lung had collapsed. 
Looking at the xray though her lungs looked fine.  Dr. Eric informed me that if they didnt see improvements shortly they would have to put a tube down her throat and have a machine breathe for her.   Again my world went fuzzy and everything started happening in slow motion.  Why cant she breathe?  Her lungs are fine. Shes not sick.  What is happening?

After a few minutes she started to stabalize and turn pink.  Thank you God, I dont want a breathing tube.  We are going a thousand steps backwards.  My healthy baby is going down hill and fast.

The rest of the day was kind of a blur.  With the breathing machine it was hard to hold her.  She has so many tubes everywhere. When Mike got there he wanted to hold her and the nurse was busy.  I was pretty confident i could hand her to him because i had done it several times for myslef.  I had him sit in the rocking chair as I gathered all of her cords.  I was mainly worried about the CPAP because it has two big hoses that come unhooked pretty easy.  I lifted her and the cords and set everything in Mikes arms.  Suddenly Mike started squirming and just kept saying Kendra! Kendra!  I looked down and there was blood everywhere.  Capri has an IV in her right hand, left arm and left foot.  i had the 2 on the left but forgot about the one on the right and ripped it completely out.  I put her back in the crib but the blood had soaked all of her blankets and was all over her!  The doctor was right by the room so he ran in and after laughing at me, finished pulling it out and bandaged her up.  I just explained to him that she was tired of 3 IVs and so being a good mom, I took one out for her.  :)  After we got her cleaned up she put her hand in her mouth and smiled.  She was happy to have a free hand again.

Friday, January 10, 2014

Is this a dream? please let it be a dream

Saturday night Capris heart decided she had had enough.  she went in and out of SVT throughout the night and into the next morning.  After struggling to correct her with ice, we decided it was time to go to the emergency room.  Mike stayed with A and B while I took Capri to primarys.  After checking for illnesses we determined that her new heart med wasnt working and we needed to try another.  They admitted her to the CSU and we settled in for the night.

Over the next few days we tried the new med and seemed to be having success.  she had a few small episodes but was able to correct them with ice or on her own.  By Wednesday they were comfortable with letting us go home.  We spent the morning talking with insurance, signing paperwork and waiting for pharmacy to fill the new meds.  20 minutes before we were ready to leave Capri went into SVT.  Right as it happened Dr. Pilcher was walking by so i grabbed him and asked what we should do.  After about 20 minutes she didnt come out of it on her own so we used ice.  then we used ice again. then again.  Nothing.  They brought up the heart medication that stops her heart for a second and then restarts at a regular rate.  small dose.. nothing.  medium dose.. nothing.. large dose.. nothing. 

We were ready to go home and now we are headed to the Cardiac ICU.  This exact thing happened last month. I feel like i am reliving december, what is going on?? We rushed to the ICU and gave her one more dose of adenosine.  This time a very large dose.  One they were worried may stop her heart for too long, yet.. nothing.  This medicine doesnt even touch her.  The only thing left is to shock her.  I have never been here for this, I dont know if I am strong enough to stay.  Then I look at this poor helpless baby.  Scared and crying and all of these strange people rushing around her.  I cant leave her.  As hard as it is for me to watch, she is going through this.  She is a tiny baby going through more than most adults ever go through.  So i held her hand and told her it was going to be okay.

A flood of doctors, nurses and respitory therapists rushed in and out of the room, placing the shock pads turning on high flow oxygen to help her breathe, giving her medication to help with the pain and help her to not remember anything.  After what seemed like an eternity they were finally ready.  Machine on, charging to 3.. clear... we all backed away as the doctor pushed the button.  I watched her chest get tight and then lift off the bed as her arms flew to the side.  I heard her scream and saw the tears stream down her face.  we all rushed back to the bed I kissed her head and told her it was going to be okay then turned and buried my head into the techs shoulder standing next to me.  He rubbed my back and told me it was going to be okay.  (I thanked him later for being my fill in husband)  It worked and she was okay.  I looked up at the monitor to see her heart rate slowing down and her oxygen rising.  It was over.  She was okay.

An hour later as we were settling into the room Mike had arrived and things were starting to be okay again.  Then I saw her heart rate rise.  110..120..130. damnitt she is in SVT again.  but then it kept rising... 150..170...200..220.  Her heart has never beat this fast.  She goes into SVT at 130, she is unique. At 220 i could litterly see her heart beating out of her chest. it was pushing her chest up and down so fast it was unreal. Doctors swarmed into her room again.  Replacing the shock pads they didnt even want to mess with the meds.  We know they dont work. Machine on.. charging to 3.. clear .. I turned away and heard the thud. Tears in my eyes i came back to her bed to hold her hand.  Nothing.. it didnt work.  Re charging.. higher voltage.. clear... nothing.  Again.. and again.  Capri stopped breathing.  The respitory therapist pushed her jaw forward and tipped her head back. still nothing.  She bagged and started giving her manual breaths.  After the longest 5 seconds of my life she opened her mouth and took a breath.  She was okay but still in SVT.  They put an IV med in to slow her heart and let her rest to recover.  Ten minutes later she was stable so they shocked her again.  I turned to see Mike sitting in the corner away from everything.  His eyes were red and he was looking at the ceiling.  This is to hard.  Everything was fine 4 hours ago. what happened??? Finally she went into a normal rythym and fell asleep.

Once she was stable Mike and I decided to run to the cafeteria and get a quick bite to eat.  We walked to the front of the hospital and discussed what we did from there.  Capri needed someone to stay with her she was to unstable.  A and B just started back at preschool though and had school the next day.  I hate feeling like i am putting them on the backburner.  I dont want them to feel like Capri is the only one that matters.  They need to know they are just as important.  We decided Mike would stay and take the morning off to stay with Capri and I would take the kids home that night and to school in the morning.  I took a few bites of my sandwich but couldnt eat anymore.  I wanted to be with Capri.  I left Mike to finish eating and went back to the CICU.
 As I walked into her wing I saw our cardiologist walking towards me, her smile faded and she mouthed "im sorry".  NOT AGAIN.  please not again, she cant handle this.  Her heart cant take it anymore.  I went into the room and she was at 200 again.  We pumped up her meds, and got a bag of ice.  I covered her face and counted to 10.  This is still just as hard as the first day I did it.  watching her struggle and kick to try and get away from me.  I am hurting her, she cant breathe.  after 10 seconds nothing changed.  The doctor tried with ice, nothing.  We tried using the meds to stop her heart, nothing. We have to shock her.  This is the 8th time she has been shocked in 7 hours.  My babies heart is going to give out.  Fortunately after the first attempt it kicked her into a good rhythm and she was ok.  she drifted off to sleep with the help of sedatives and slept through the night.  There was no way I could leave the hosptial so we got a sleep room and cuddled up in a twin bed for a sleepless night.