5 weeks

5 weeks ago, at about this time I was alone in an emergency room begging doctors to tell me what was wrong with my baby.  I remember laying my head down on the pillow trying to decide if i should call Mike who was in Boston and let him know.  He was coming home the next day, maybe i should just tell him when he gets here so he doesnt have to worry.  I read through my first couple of blogs tonight, it seems like that was a lifetime ago.  This has been the longest month of my life.  We have been through so many ups and downs I still feel like my head is spinning.  In the last week however we have had so much good news that I feel like things are looking up.

Today I spent the afternoon with Capri.  I held her all afternoon, just cuddling, breathing her in, holding her tight.  We found out today that she has thrush (a yeast infection in her mouth) most likely caused by the antibiotics I was on for the mastitis.  Having an infection in your mouth does not make it very enjoyable to intake any food.  The hope is that when the thrush is cleared up she will take a bottle without a problem.  She did breast feed for almost 5 minutes so we are slowly progressing.   Her liver function still hasn't improved any but they are hoping that once she gets to full feedings and off the lipids her liver will fix itself.

We had a local LDS church contact us and ask if they could help us out.  Mike and I are not very religious people.  We have become much more spiritual since all of this has happened but we do not go to any sunday services for any one church.  I have such a hard time when people ask me what they can do to help.  Asking for help is very hard for me.  I want to be able to fix everything on my own.  My neighbor and mother stepped in and let them know that yes we could use help.  Tonight, while we were at the hospital they came over and cleaned our house.  They also left a weeks worth of freezer meals for us.  We feel so blessed to have a community come together and help us out.  As much as I don't like asking for help it is needed and very much appreciated.  I have a stack of thank you cards sitting by my bed that i need to write to all of the wonderful people who have helped us.  I keep thinking i will have time to sit down and write them but just like with everything else, there are not enough hours in the day.  So for now I want to thank all of you who have sent us flowers, brought us gift baskets, helped us financially through our donation site, cleaned our house, helped us with hotel costs, mowed our lawn and made us dinner.  We are so blessed to be surrounded by such amazing people.

1 in a million

I took the kids to the hospital by myself today.  First time I have done this without having a friend or family member be there to help out.  We went to the play area to drop them off so i could go visit Capri.  Unfortunately they did not have enough volunteers so i couldn't leave them.  They came to the room with me and got to hold Capri.  I love watching A's face when he holds her.  His face lights up like its christmas morning.  He is such a proud big brother, and I am such a proud mama!  As we were sitting in the room our favorite nurse, Vicky sat next to me and laid her hand on mine.  She told me that she wanted me to know she has been a nurse at primary childrens for 30 years and has seen everything you could ever think of.  She then told me that in her 30 years she has NEVER seen a child with ebstein's as severe as Capris do this well.  She said, Kendra this just doesn't happen, ever.  As my eyes welled up with tears A leaned his head on my shoulder and asked me if my tears were happy tears or sad ones.  For the first time in what seems like forever  I could tell him they were happy tears.
Capri drank 9ccs out of a bottle this morning and 11cc's out of a bottle this afternoon.  Today is the first day she has really drank from a bottle, again I am a proud mama!  Its slow but its progress.

For all of my friends, neighbors family etc.  Two weeks ago I wrote about how I couldn't/didn't want to talk to anyone.  I am okay now.  Our prognosis has changed drastically and I am taking medication to help me cope with all of this.  In the last 2 days I have had several people tell me they were scared to call me or come over.  I love all of the support we have been given and welcome visitors.  Im still not who I was 2 months ago, however I probably won't ever be who I was 2 months ago.  Capri has changed our lives.  I am somewhat normalish though so please don't think Im still the crazy lady that cant handle being talked to.

Writing this blog has helped me cope with all of the things going on in my life.  It is also a very hard thing to do.  Putting out all of my emotions, deepest thoughts and most likely sharing to much information is something I have had to think long and hard about.  I read and re read every blog I write trying to decide if what I am writing is ok to publish to the world.  In the end however, I have had sooo many people tell me that my story has inspired them and that they read this blog everyday.  For that reason, I am okay putting all of this out there for anyone to see.  I hope our story will give other parents hope when there is no hope to turn too.

other heart moms; tantrums

I love the weekends.  Spending the day at the hospital with our entire family is much better then doing it alone.  Capri is still doing great we just need her to eat on her own and gain weight.  She is down to 5 pounds 12oz so she has lost a few ounces since she was born.  She is only on .12liters of oxygen which is hardly any.  That is what the cardiologists want to send her home on.  She slept most of the day today, hopefully because she is growing.

As i was laying in bed tonight i got on the intermountain heart Facebook page.  a page dedicated to moms in the salt lake area with heart babies.  I started looking through all of there blogs and found 1 with an ebsteins baby. Ebsteins affects 1 in 10,000 babies so finding other parents going through this is not very common.  Ive spent the last hour reading her blog, from her son being born, to going through his first surgery to living a normal life till he was 1 or 2.  Then they flew him to Minnesota to do a cone procedure.  This is a surgery that we have looked at length into and seems like one of the best options for ebstein babies.  As i was reading her story it felt like i was looking into our future of what was to come.  The fear of bringing her home and sleepless nights wondering if she is going to breath or not.  It is a relief to read other peoples stories and see there babies doing so well.  That means Capri has a chance too.  I have had several people email me there stories of their ebstein baby who made it to 10 or 11 months.  I know that there is a good chance that that can be our reality but we could also be in the 5% group that makes it to adulthood.  She has already defeated so many odds why not a few more.

I wish i knew what to do to help A with all of this.  He is having emotional break downs all day long.  He used to hardly ever cry but is now throwing tantrums 5-6 times a day. It is always over little things like another child is playing with the train, or his sister bumped his arm.  I don't know what to do to help him be okay again.  Im worried that when he starts preschool in a few weeks he is going to continue these tantrums at school.  He wasn't like this before i was admitted into the hospital.  Any advice to help him would be greatly appreciated.

dont stress the little things

Today was a mostly good day.

We took the kids to the hospital this morning and A got to hold Capri. His face lit up when we told him he could hold her.  All he talked about from the moment he found out i was pregnant was how he was going to hold her and take care of her and sing to her.  He is going to be the best big brother ever.
I also got to try and breast feed Capri today.  The drs thoughts are she is not feeding from a bottle because she does not like the texture of the rubber nipple.  She can only eat a small amount right now so i pumped all the milk out first then let her try to latch on.  We tried for about an hour and she latched several times, sucking for 5-10 seconds.  After 10 seconds though she was so tired that she would fall fast asleep.  We would rub her feet, trace her spine, undress her, do everything we were supposed to to wake her up.  Trying to suck was just to much for her heart however so her coping mechanism is to sleep.
We spent most of the afternoon there, 8 hours including drive time.  When we got home my lawn was mowed and all of my weeds had been picked.  The weeds in my back yard had started getting out of control, milk weed the size of my 4 year old.  It takes me all summer to grow a decent looking garden but i leave my house un attended for a month and the weeds seem to flourish.  While we were playing baseball in the front yard I found out the person who de weeded our yard was a neighbor I have never met.  Someone who was so sweet that saw we needed help.  Someone who has no attachment to my family whatsoever yet out of the kindness of her heart she decided to help us.  I am still in awe at all of the people who have helped us out.  All of the strangers who have offered to help.  We live in such a great community and i grew up in such an amazing community.  That is a great thing about small towns.  Everyone pulls together to help each other out.
Now for the bad news of the day.  I was attempting to clean my house and get somewhat organized.  My breast milk has overtaken my freezer so we packed it all up and took it outside to the deep freezer.  At some point the freezer did not get closed all the way.  My freezer smelt like i had a dead deer in it.  All of that meat, ruined.  Packages of chicken breasts and wings from costco, bags of hamburger meat, a full size turkey, a spiral ham, pizzas sitting in a pool of blood.  All of that food, ruined, i could have cried.  But i didn't, instead I laughed.  What else can the world throw at us?  Im ready, go ahead.  Its summer time,  we can have lots of salads and pasta.. who needs meat anyway, right?
Mike and I are getting much better at dealing with stressful events.  2 months ago throwing all that food away would have resulted in a fight blaming each other on who didn't close it tight enough or who unplugged it to work on the boat.  Instead we shook our heads, laughed at the irony, and cleaned it out together.  Life isn't worth getting stressed about the little things, fighting about things that you cant solve.  Its better to just laugh and move on.

lost in thought

Capri is doing well today. I got to feed her with a bottle!  She only drank 2 cc's so not a whole lot but it was a start.  She does well sucking on a binki and has done so the last few days, it was so funny to see her face when she sucked and food came out.  Her eyes widened and the milk kind of just leaked out of her mouth.  She waited a second then lurched towards the bottle to try again.  After 2 minutes she got very tired and fell asleep.  That is one thing that the Drs are worried about, her heart is working so hard that her body just isn't strong enough to suck on a bottle.

Her liver issues have also gotten worse.  She is supposed to be below a 1 and she was up above 10 today. (I cant remember if that number is enzymes or bilirueben or something completely different) Last night they started her on a medication to help with the liver function and hopefully now that she is eating that will help as well.   On a positive note, all of the genetics tests came back negative.  They thought she may have Turners syndrome ( where you are missing one of your x chromosomes) but everything came back normal.  She will not have any developmental delays or physical problems besides getting tired very easily.  I made a schedule today of our new life
730 wake up
830 leave for hospital
930-12 spend time with Capri, while kids play at play area
eat lunch in the car on the way home
130 nap
330 clean house, do laundry etc
530-830 mike spends time with capri
830 kids in bed
10 mike gets home

This means Mike will only get to see the kids on weekends and on thursday nights at family dinner at my father in laws.  Its defiantly not an ideal situation but I don't know how else to make it work.  The kids start preschool in a few weeks and need to get into the habit of waking up early.  If we are used to leaving the house by 830, getting to school by 9 should not be a problem.
Now that grandparents have left and we are back to paying for everything on our own we are back on the Dave Ramsey program.  Envelopes out, budget even tighter than it used to be but thanks to all of your support we were able to pay off most of our medical bills and we are going to be okay.  Now if i could just figure out a way to get my SUV to get better gas mileage we would be set!

I sat on the 3rd floor of primaries today listening to 2 people playing the piano and violin.  They were not getting paid to be there, just two guys in there 20s donating there time and talent to help parents and children.  It was so calming to listen to them play.  I wish i had a talent like that, it was beautiful.  I sat in the chair, closed my eyes and just let the music consume my brain.  Letting every stress, worry and concern about Capri float away while i got lost in the moment.  I couldn't have been there longer than 10 minutes but i felt so refreshed afterwards.  It reminded me why I loved yoga so much.  A way to forget all your worries if even for just a moment.  I think im going to look into a night class to see if that will help me sleep vs taking sleeping pills.

I feel like i have a plan now and this next month, although stressful is going to be doable.  We are going to be okay

date night

Today they removed the high flow nose cannula and replaced it with a regular oxygen cannula.  They moved her feeding tube from her mouth to her nose so her mouth is free from all tubes.  As you can see she's not sure what to do with nothing in her mouth so she has  found her fingers. For the next month there hopefully will not be a lot of change.  We are just waiting for her to learn how to digest her food, then try to use a bottle, then gain weight.  Once she can do all of that successfully we will talk to the cardiologist about time lines for her 2nd heart surgery then we will hopefully get to take her home.

When the nurse told me she would still be in the hospital for a month my heart sank.  I thought it was just another week.  I can do another week of this crazy schedule, i don't know if i can do another month.    That means Mike will have to go on a business trip before Capri gets out of the hospital.  Bad things happen when Mike goes on business trips.  When i was 19 weeks pregnant i thought I had food poisoning.  Mike was in California so i called my best friend to bring me to the ER.  After a night full of MRIs ultra sounds and CT scans i found out i had appendicitis and was going into surgery.  Mike was on a reservation in the middle of no where with no cell phone service.  He found out i was having surgery through a Facebook message.  Fast forward 17 weeks later and i was back in the ER thinking i had a pulmonary embolism while Mike was in Boston.  That is the day we found out about Capris heart.  I am not looking forward to business trips.

Mike got to the hospital and could tell i was overwhelmed.  We asked his dad to keep the kids overnight so we could go on a date.  Its been a long time since we have gone on a date just the two of us.  We went to city creek and walked around looking at all of the shops.  Then we went to dinner and reminisced about our lives together.  From the first day we met to spending everyday together for the first 2 weeks we knew each other.  Old love notes we used to write each other to cheap dates where all we could afford was boones farm and a blockbuster movie.

 Finding out we were having a baby with a heart condition was the hardest thing I have ever done.  Knowing this however has brought Mike and I so much closer together.  Its not like we did not have a good marriage before, we love each other very much, but having 2 toddlers, 2 careers and trying to fit in time together you tend to just drift apart.  Finding time to spend together just got pushed lower and lower on our list of things to do until it got so far down that it just didn't happen anymore.  We needed to work on the yard, he was gone on business trips every other week, I was busy teaching the kids all of the stuff you teach toddlers and was so engulfed in my job and worried that the clients i care so deeply for were not getting the attention they needed.  It wasn't that we loved each other any less, life just got in the way.
Capri helped us to remember why we fell in love.  How important it is to keep working on our marriage and making sure that our family comes first.  Contrary to our HOAs belief, life will go on if we have a few weeds in our yard, or i don't mow it every week.

So heres to waiting and letting our baby grow while we grow at home.. Its time to come up with a new routine and not be living one day at a time.  We need to find some organization in our new hectic lives and find out the best options for all of us.

2 weeks old

Capri is 2 weeks old today!  I came into the hospital room this afternoon to see her dressed in pajamas and rocking in a swing.  It is amazing how far we have come in these last two weeks.  As I sat and talked with the nurse she reminded me of how lucky we are.  She told me that every nurse and dr in the NICU is amazed at how well Capri is doing.  She wasn't supposed to be this healthy. They cant understand why she is doing so good.  Again, tears of joy fell from face as i looked at my little miracle baby.  They took her completely off her Nitric oxide today.  Her lungs are strong enough to breathe on there own.  Her oxygen is down to 20% and her feedings are up to 30ccs.  Once she gets to 40 she will be able to start taking medicine that will help her liver to function normally then we just wait for her to gain weight and show us that she can digest her food.

4 weeks ago I prayed to a God who I haven't prayed to since I was in high school and my parents told me too.  I talked to him about Capri and how scared i was and how desperately i wanted to see her alive, if even for a moment.  I remember pleading with him to just give me 2 weeks.  In 2 weeks i could hold her, talk to her and tell her how much her mommy and daddy loved her.  If she had to go back to heaven i could handle it if he just gave me two weeks.  I know that this is a silly thing to worry about, but I cant get it out of my head. Tomorrow am I going to go to the hospital and see that she is back in that critical state.  How does God work?  I bargained with him for 2 weeks.. what if thats really all i get?

My body is so tired.  I am trying so hard to split my time and be everywhere that I need to be.  Spending time in the morning with A and B, then driving the hour to the hospital.  We usually grab food to eat on the road.  Once we get to the hospital i bring the kids back to see Capri then have a family member sit with them in the waiting room or the play room while i spend time with Capri.  Then i switch with the family member so they can spend time with her while i go to the play area.  Every 4 hours i have to find a place to go pump because Capri cant breast feed and most likely never will.  By now Mike is just getting to the hospital and the kids have had enough.  They are so done with having to go to the hospital everyday.  They just want to stay home.   Another hour in the car and we get home just in time to take baths and go to bed.  The next day we repeat.  At night by the time i have pumped and written in the blog Mike is already asleep.  I wish i could just pause time so we could have a minute for the 2 of us.

My mother in law is going home tomorrow then I am truly on my own.  No family member coming with me to the hospital everyday, to help me split the cost of driving and food.  It will just be the 5 of us.  I know we will be fine and will figure it out, we always do but i would be lying if i said i wasn't a little worried.  B is attached to my hip right now and wants nothing to do with a babysitter.  I think she is worried i am going to leave for a week again.  As much as i want our lives to be on hold i know things have to continue on. Mike will need to start traveling again next month, the kids both start preschool next month and eventually i will need to go back to work as well.  For now though i am taking one breath at a time and pretending like everything is okay.

bittersweet

Today is bittersweet.  My mom went home today.  She has been next to my side since June 26th, by my bedside at the hospital, taking care of my children when i couldn't.  Sitting with me being scared, holding my hand and telling me whatever happens that it would be okay.  Then she stayed in a cramped hotel room with us and letting both kids sleep in her bed so Mike and I could be together.  She sat in my hospital room for 14 hours watching me go through labor not knowing what the outcome of our precious baby would be, waited all night to just get a glimpse of Capri before they rushed her to the NICU.  For the two weeks Capri has been alive she has  driven me the hour and a half to the hospital  every day, filled my fridge and pantry with food to last us a month, and again been there to hold my hand through every terrifying moment.
I know that everyone says they have the best mom but I really do.  Not many people are willing to drop everything going on in there life and be there for as long as you need them.  For my dads sake however I am glad she is going home.  I cant imagine how much he misses her and how hard it has been running his business alone. My mom holds everyone together.

For the good news:  We got to the hospital around noon and stopped at the cafeteria to get lunch before heading up to let the grandmas say goodbye to Capri.  ( All of my grandmothers drove the 8 hour drive to come and see Capri for a few days, including my 96 year old great grandmother).  Just as we were finishing, my husband surprised us at the hospital.  It was a great surprise, having him around always makes the day just a little bit brighter.  We headed over to the NICU and Mike and A went in first.  10 minutes later Mike came back and told me i needed to come back alone.  My heart was in my throat.   I knew i shouldn't have said anything yesterday.  I had jinxed her.  She had gotten worse.  I quickly scrubbed in and headed back to the room.  When i got there i saw all of the nurses grinning from ear to ear.  I looked at my baby and the intubation tube was gone.  She was breathing on her own.  My baby.. the one who had a 5% chance of living was breathing on her own.  She was calm.  She wasn't struggling, her oxygen levels were not going up and down, she was stable.  I can not describe to you the joy in my heart when i saw her.  Its not a fluke.. my baby is gonna be okay.  She did it.

A is struggling more and more each day with leaving Capri at the hospital.  He doesn't like to spend long in Capris room, about 10 minutes or so.  When it is time to leave however, he doesn't like it.  He went back into her room to tell her goodbye and the tears started flowing down his face.  It was a silent cry, his lip trembling as he laid his head on my shoulder.  I asked him what was wrong and he told me he just didn't want to leave his sister.  he wanted her to come home and sleep in his room so he could take care of her.  It is so hard to see Capri in the hospital but it is just as hard to watch A and B suffer and not understand why there baby doesn't get to come home.  They don't understand why there cousin got to go home after he was born, the neighbors baby got to go home after he was born but our baby doesn't.  I wish i could keep them away from all this pain.  I want to protect my children from every bad thing that comes there way but there is nothing i can do here. We just have to face it and adjust to our new life of being in a car 3 hours a day, spending 3-6 hours at a hospital, and only being home long enough to sleep and eat breakfast.

cautiously optimisitc

I am hesitant to write this post.  I feel like the last few days have all been a good dream and at any second im going to wake up to the Drs telling me that Capri is back where we started, unable to breathe on her own, heart not working, life not long.  But thats not what Drs are telling me.  Everyday i come in we have nurses and Drs coming to the bedside amazed at how well she is doing.  Everyday her stats improve and she gets just a little bit better.  No one thought this was going to happen.

They did the echo this morning, her PDA valve is almost all the way closed, just a tiny leak.  Drs are not concerned about the leak however.  They have told us the heart is working, her pulmonary valve is letting blood flow through, she is okay...
Today they took her oxygen down from 50% to 30%. Her Nitrix from 15 to 10  and plan on lowering it to 5 throughout the night.  Her breaths per minute have gone from 35 to 25.  When she gets to 20 we can take her intubation tube out.  That means in the next two days we will get to see our baby girl without any tubes sticking out of her.  We can hold her without having to have a team of nurses and respiratory therapists by our side to move machines cords and make sure her SATS are staying where they need to be.  I will be able to just hold my baby.  So many things that i took for granted with my other children.  Holding them, breast feeding them, giving them baths.  All of these things i so desperately want to do with Capri.
After the tubes are out and the Nitrix is turned off the only thing left to do is make sure she can gain weight.  They are concerned that because her heart has to work so hard she may burn more calories than she can take in.
 There is a good chance we can take our baby girl home soon.  That is a sentence i never thought i was going to be able to say.  Thank God for miracles.  For that 5% chance.  I will take this any day over winning the lottery.. Im pretty sure our odds were about the same.

We are in no way out of the woods.  We still have a very long way to go and babies with Ebsteins commonly pass away before they turn 1.  Her heart is not suddenly fixed and she is all better.  We will still have surgeries down the road,  and we are still waiting to here from the geneticist about some other syndromes she may have.  Our lives have changed forever but as i lay here at 1230 in the morning, to the left of me is my son sound asleep on my arm.  To the right of me is my daughter wrapped in my husbands arms fast asleep.  Capri came to us to remind us how important our lives are.  How lucky we are to have each other and how important our family is.  I also believe she came here to help all of you reading my blog.  Remember how important your families are.  How quickly your world can change and to not dwell on the little things.  Let your kids stay up an hour late.  Let them have that extra piece of candy.  Take that day off of work because they want you to stay home and play.  In the grand scheme of things that is what matters.

But for now everything is good.  We are happy again.  We have hope again.  I have started bringing out baby things one by one.  Things are going to be okay...

Ray of Light

The last couple weeks has been 1 day after another of the same thing day in and day out. Wake up, go to the hospital, go to work, go to the hospital, go home, go to bed. During our time at the hospital I hear the same thing day in and day out. It's a waiting game, we will just have to see how she does, we want her stats to be better before we do (X), Capri is doing better today, Capri had a rough night last night. I get the feeling the last while that I am living the true life of the Bill Murray movie Groundhog day. Every morning I wake up, I can tell you to the minute what my day will look like and what my plans are for that day. It often feels like the world I live in is black and white and someone pressed the mute button.

Today is Monday, I am kind of shocked to hear myself say this but, today when I woke up, I thought for a second and realized "today is a great day"!!!  Yesterday when we went up to Primaries to see Capri it turned out to be one of the best days I ever could have hoped for. I met Kendra at the play place on the 3rd floor. She starts to tell me that Capri is doing really good and she was awake for a while during her time with her. I smile as that news is much welcomed. There is part of me that says "I have to see it to believe it" as I know that Capri has good moments and bad moments, it just depends on when you are in the room as to which one you will see. As I walked up there I thought "I hope she is still awake and happy, maybe she is going to be good all day today, that would be wonderful".  I walk in the room and see the same thing, nurses standing at her bed side running checks, tests, moving sensors around to get a better reading, monitors flashing stats, and my baby girl is the center of attention as always... sleeping. "Hello" I say to the nurse as I walk up to the bed side and sit down, "hello dad" the nurse replied.  I asked the same question, "how are things, anything new?" As I stare at Capri laying in her bed the nurse replies "Capri's stats are looking great so far, and she had a great night last night".  I pause for a minute as I realize that I heard the word "great" in that sentence. I perk up and ask the nurse to expand a bit.

The heart medication was removed on Friday at 11:00 a.m. and the valve is now able to close. It might take a few hours, it might take a few weeks. As mentioned in a previous posting, the first time she was removed from her meds, it took just over 2 days when it closed. Sunday when I am visiting, it has now been 2 days and 3 hours since it was removed. I look up at her monitor and see that Capri's oxygen level reads 89 (since born, her average is between 72-86). The nurse says that she has been active, awake, good oxygen levels, her heart rate is great, blood pressure is great, I start to feel some excitement. The nurse then says "and we were able to turn the respirator down from 40 breaths per minute to 30 breaths per minute. we also turned the oxygen mixture down from 76 to 54%". I am sure I know what she is getting at, but I want to hear her say it as I ask "what does that mean exactly?" It means the machine is giving her less oxygen and less breaths of the oxygen every minute, and her stats are staying the same as before. If we do the echo tomorrow morning and her valve has closed, it means her heart is working.

I cannot believe what I am hearing as I am smiling from ear to ear. I look down at Capri and I reach out to her and put my hand on her head. I start to rub her soft thick hair as I notice that her eyes open up and she is looking right at me. Not the mad, upset glare, but the well rested, refreshed, hello daddy look. She kept her eyes open for 10 minutes or so and just looked around the whole time. Nurse informs me that they started giving her breast milk for the first time of her life. 1 TSP every 2 hours. It is not much, but it is something, and it is a big step forward.

I leave the room and take a walk in the hallway for a bit. I come back and My brother Doug and Annie are there to visit. As I take Doug back there we sit and stare at her laying there with her eyes closed. I am talking with the nurses and Doug is focusing on Capri. As we stand there her eyes open and she stares right at Doug.  I move in and when Capri looks at me, her eyes close. Capri had this real fascination with Uncle Doug, and I was only getting in the way. Doug started talking to her and she calmingly opened her eyes again and looked up and stared at Doug again. 20 minutes goes by and I lean in to say goodnight and she gets a little upset that I am blocking her view of Doug so I quickly retreat into the background. She continues to stare at Uncle Doug as if they are having a conversation or something.

It does not matter who she wanted to stare at whether it was Doug, myself, Kendra, or anyone else, she looked happy, and I could not have asked for anything else.  So yes, today I woke up and I felt great again, I see vivid colors, sun shining. Today is going to be good....

Today was a good day

Today was a good day.  I cant remember the last time I said that.  I dont know if its the post partum meds finally kicking in, my hormones stabalizing or the fact that Capri is beating every odd she has been given.  Whatever the reason it feels like a weight has been lifted off my shoulders.

Today we woke up to the kids crawling in our bed to snuggle. We went downstairs ate breakfast and played london bridges.  It was a normal day before our lives changed.  My mom took me to get my nails done than we went up to see Capri.   In my opinion today was a big day for her.

When i went into her room i noticed right away that her SATs were in the high 70s.  Yesterday she was in the 90s. Then i moved over to the ventilator machine.  Yesterday they had weened her down to 70% oxygen.  Today they were giving her 85%.  My heart sank and i thought that yesterday was just a fluke and she wasnt really getting better. I sadly asked the nurse why they had upped her oxygen.  She told me that about an hour before we got there, Capris oxygen dropped from the high 80s  to 54% so they had to have the ventillation machine do 100% of the work.  the machine brought her back up and they were slowly weening her off it again.  It took me a few minutes but then things clicked.  Why would her oxygen suddenly drop? The only reasonable explanation to me is that the PDA valve closed.  Last time it closed she dropped into the 60s and even with the ventillator giving her 100% she couldnt get above 65.  Shes in the high 70s low 80s right now.. that means her heart is working. The surgery worked! 

Now this is all just me speculating and we could do the echo on monday and i could be completely wrong but i cant think of any other reason her oxygen would suddenly drop that low.  Dear God please let me be right.

After about an hour i went down to the play area to check on my other kids so my mom could go in and see Capri.  I was building towers with A while Mike was having a tea party in the kitchen with B.  (have i mentioned how much i love my husband).  it couldnt have been more than 10 minutes when I see my mom come back in with tears in her eyes.  My heart started beating faster as i walked towards her.  She handed me the video camera and told me to go upstairs right away.  The nurse says Capri is stable enough that i can hold her.
It has only been 10 days since she has been alive but i swear it feels like ive been waiting for this moment for months.  I dragged Mike out of the room and practically ran to the NICU.  It took the nurses about 5 minutes to get all of her cords picked up and make sure nothing was going to come out.  We had to move 2 machines to the other side of the bed and wrap her up with all the cords inside.  looking into the blanket was like looking at the inside of a computer, cords and tubes going every which way.  It took two nurses to lift her up and put her in my arms.  Mike was watching the oxygen to make sure she could handle it.  She did great, her oxygen actually went up while she was in my arms. 
Holding your baby for the first time is always an amazing experience but this was different.  The fear that i would never get to hold her alive all just melted away.  I held her tight, kissed her forehead and breathed in her smell.  Such a wonderful smell, the smell of a new baby.  After awhile Mike held her, kissed and snuggled her.  She started to get restless and oxygen was beginning to lower so we put her back in her bed and kissed her goodnight.
Today was a good day...

a 2nd diagnosis

We found out today that Capri has a second diagnosis.  She has severe pulmonary valve stenosis.  Which according to the doctor is a bigger issue than Ebsteins.  On a positive note though her surgery yesterday corrected that and it may explain why her heart is so big.  With pulmonary stenosis your valve is very small (hers was 1ml).  So in utero her blood couldnt pass through that valve causing it to go back to the heart.  The drs hope is now that that is corrected, as she gets older her heart may get smaller and her case may be less severe.  Nothing is a guarantee but again its hope.  I am cautiously optimistic that things are going to turn out ok for our baby Capri. 

This weekend we will just wait and see how she does.  They took her back off the prostaglandin this morning and are waiting for the valve to close.  As long as she does well we wont do another echo until monday.  Her little body seems so worn out.  She had to have her first full blood transfusion today.  She has had several platlet and plazma transfusions but not full blood. 

Overall our family is finding our new normal.  Ive got my crying down to only a couple times a day *as long as no one talks to me.   Our son had a hard time with things tonight.  He hasnt wanted to go in and see Capri very much, he gets squirmish and says no very quickly.  Tonight we were at my father in laws for his birthday and A was crying over the smallest things.  I took him into the bedroom and we laid down and talked about what was wrong.  He said he didnt know and then looked up at me with his red swollen eyes and told me that he didnt want his sister to go to heavan.  I asked him if thats why he was so sad and he said yes.  "my sister had surgery and now she is going to die" "i dont want her to go to heavan i will miss her".  I laid there with him and cried.  I told him that the surgery was to help fix her heart and she was doing so good.  we watched a video on my phone that i took of her with her eyes open.  We talked about how she might go to heavan but she might not.  And that if she keeps doing so good and her heart keeps getting better that we will get to take her home.
He has been so un interested in seeing her that i just assumed he didnt understand what was going on and i wasnt going to bring that stress to his attention.  Turns out he has been listening to mom and dad and knew exactly what was going on.  I wish i could put a magic blanket over my family and protect them from all of the sadness. 

I found a group on facebook today called intermountain healing hearts.  as i was reading through the posts i am realizing all of the other famlies that are in similar situations as us.  There babies have made it so far, so ours can too.  Someone has to be in that 5% so it might as well be us!

surgery

I woke up this morning to a phone call from the NICU.  Capri had been unstable for 30 minutes, her oxygen not able to get above 60.  They had put her back on the prostaglandin and would be taking her in for surgery that afternoon. 
Last night i couldnt sleep.  I tost and turned and finally fell asleep around 4.  Between the lack of sleep and the aweful phone call my mood was not so great.  I was agitated with my children and i didnt want to talk to anyone.  I went back to sleep for a few hours so that i could think more clearly.
We got to the NICU just as they were bringing Capri back to her room.  The cardiologist told us they were able to insert a cathader into her leg and bring it up to the pulmanary valve. Once there they inflated a balloon and expanded the artery from 1 milameter to 8.  They wanted to insert another cath into her other valve to block it and see how the heart did but her body couldnt handle it.  She became very unstable.  They shocked her heart with an enternal device. Nothing.  They shocked her with the paddles and her heart stabalized.  When he told me they had to shock her heart I started crying.  My poor little girl. 8 days old and having something already so tramatic happen to her.  I wish i could just protect her from all of this.

As we were sitting by her bedside we noticed her oxygen was in the mid 90s.   Since she has been born she has never made it into the 90s.  and it was staying there. . for hours.  The cardiologist came back in and did an echo her blood was flowing through the artery! There is a chance that worked and she will be ok with out the medicine now.  We will take her off the prostaglandin again tommorow barring nothing bad happens tonight.  If she can function well on her own with the PDA valve closed we will get to take her home in the next couple of weeks.  If her stats drop again and she has to be re put on the meds we are close to the end of the road.  The dr said at that point we can do a High risk surgery because her valves just arnt firm enough.  "It would be like sewing wet tissue paper" the outcome is not great.  Or we talk about quality of life and decide that its time to let her go. 

So if any of you are still praying, meditating, rubbing rocks, doing rain dances.. whatever you do to help miracles happen we need you right now.  Help her valve close and her heart do what it needs to do. 

My emotions have been all over the place today.  My phone is my sanctuary.  if im looking at it then people wont talk to me.  Again im not trying to be rude so please dont take it that way i just cant handle the questions of "how are you doing"  "are you holding up ok" No.. im not. And i wont be until i know whats for sure happening with Capri.  So i lose myself in my phone and tune out the world.  I cant look at people in the eyes anymore.  even strangers on the street.  i look at them and start crying.  So i keep my head down and say over and over in my head.. things are going to be okay... i am going to be okay. 

ps i took my sleeping pill about 30 minutes before writing this blog and my eyes can not focus on the screen so i appoligize in advance for all of the mispellings cause i am quite certain there is a lot :)

happy 1 week birthday Capri

Today is Capri's one week birthday!  If you would have asked me 3 weeks ago if i thought we would get to celebrate this day I would have told you no.  So many doctors had told me there was a very high chance she would only live a few minutes, a week sounded like an eternity.  But she is here.  And she is fighting.

 Day 2 of being off the prostaglandin medication and she is  doing well.  Her valve is still open about 40% so we have quite a ways to go.  Yesterday we discovered that her pulminary artery was not formed correctly.  Normally you have one flap on one side and 2 flaps on the other side.  Her 2 flaps are sealed together so it cant work properly.  Yesterday the cardiologist said he did not expect any blood to flow through the pulminary artery because of  attached flaps.  We will need to insert a cathader with a baloon to manually open the artery.  In her echo this morning however, there was  some blood passing through.  Not a lot, but more than expected.  She is continuing to surpass what doctors have expected. 

She still has a long way to go.  All day she has been struggling with her oxygen.  Ideally they want babies to be in the 90s.  Capris goal is to keep her oxygen in the 80s for now.  Today she has been in the 70s and dipped down to the 60s several times.  She is on 100% flow from the ventilator so we still need those lungs to work better. 

I got to sort of hold her today.  They needed to change her blanket so i got to lift her up a few inches.  To most people that is something so tiny you wouldnt give it another thought.  To me, it meant the world.  this is the first time i have got to hold my precious baby.  I also changed her diaper for the first time.  Again, something that most new moms dread, made  my whole day.  If she can keep her oxygen in the 80s tommorow there is a chance i will actually get to hold and rock her.  I pray that her oxygen will do what it is supposed to so i can have this moment. 

praying for good luck

I haven't written in here in a few days.  Every night I sit at my computer and contemplate what to write. I am so drained physically and emotionally i haven't been able to put my feelings into words.

This morning Capri was taken completely off her prostaglandin medication.  This medicine is what has been keeping her valve open which is what is pushing blood through her system and keeping her alive. Once off this medication her valve will close and we will see if she can distribute blood on her own.  In a perfect world her heart will be able to push that blood where it needs to go and we will be able to take her home in the next few weeks.  If she cant do it on her own all of her SATS will drop and they will have to quickly put her back on the medication.  There is a very small chance that the valve will not re open and at that point she would be rushed into emergency surgery and things would not look great for her.   Most likely though the valve will re open and then we will try other surgeries.  Ideally they want her to make it to 6 months before surgery.  At that point her valves are more formed and they have a much higher success rate.  Doing surgery on the valve now is like stitching together tissue paper.

Today is the first day that i have felt like there is hope.  The last 6 days I have been preparing myself for her death and knowing that these moments in the hospital are the only moments we are going to get with her.  We still have such a long way to go but there is a light at the end of the tunnel.  Todays visit with the cardiologist was the first time they gave us a glimpse into the future.  Every other doctor has just told us to take it one day at a time.  He also told us there are 4 different stages of ebsteins anomaly.  Right now she is classified as level 3.  Again, hope.  She is not worse case scenario like we thought.

Last night i fell asleep around 10 and woke up at 11 freezing.  My body felt like it was the middle of february and i was sleeping in the snow.  i had the covers up to my neck but nothing was working.  From my neck up was burning hot.  Ive never had such extreme differences at the same time.  Mike had a cold rag on my head while rubbing the rest of my body to heat it up. I had a 102 temp.  I was miserable.  I woke up every 30 minutes for the rest of the night.  this morning I went to my doctor and found out i had mastitis.  Because i had a fever above 100.5 i couldn't go to the NICU today.  Capris big day of getting off her meds and I cant be there.  I sat in the waiting room for 6 hours while Mike and my mom sent me pictures and videos and texted me updates.   I sure hope all this bad luck is because my good karma is all being saved up to bring Capri home to us.

We came home tonight and one of my wonderful neighbors brought my family dinner.  One of the same neighbors who cleaned my entire home before we came home on Saturday.  Another neighbor brought me milk so my kids could have cereal in the morning.   I am so blessed to have such amazing people in my life.  I couldn't have asked for a better block to live on.

My life is still a whirlwind with no end in sight.   I still am not ready to answer phone calls but have started texting people back.  This has been so difficult for us yet it has brought our family so close together.  Realizing that you never know when tomorrow could be the last day you are alive makes you change the way you look at things.  Ive heard that my whole life "live like everyday is your last"  But it doesn't have the same impact until it is really happening in your own home.

coming home

Today was bittersweet.  It was my last day at the hospital and the first day I have been home in 3 weeks.  I get to be at home with 2 of my children and it is such a great feeling having them lay here beside me.  On the other-hand, I had to leave a part of me at the hospital.  My 3rd child, my precious baby is there all alone.  Without mom or dad.  I remember every detail of bringing A and B home.  The excitement of dressing them in there take home outfit, strapping them in there car-seat, the wheelchair ride to the car.  The drive home with both of them was filled with excitement and fear of wondering if I was ready to do this.  All of the middle of the night feedings, trying to heal myself while taking care of a newborn.  The trip home today was filled with tears in both mike and my eyes, sadness and silence.  What if she becomes unstable in the middle of the night?  We live an hour away from the hospital. what if we don't get there in time? 

This morning was a hard day in the NICU.  Every other day we have had nurses who have been so amazing.  Willing to do whatever we needed to help us feel more comfortable and understand what is going on with our baby.  The nurse today did not have the same attitude.  She took the blanket that Capri had been wrapped in since she was born to the laundry.  We had a note right next to her crib to keep her blanket because the Angel Watch foundation was going to turn it into a teddy bear for us.  We had an emotional attachment to that blanket.  It meant something to me.  She was very short with her answers to every question we had and finally she wouldn't let my sister come back and take pictures of washing Capri's hair for the first time. I cant imagine how stressful it must be to be a nurse in the NICU but I hope to God Capri never has a nurse like her again.  I don't do well with people who arn't friendly.

It is taking every ounce of energy I have to have conversations with people right now and be somewhat normal.  Part of me just wants to crawl in bed and lay there all day.  To pull the covers over my head and pretend like the rest of the world doesnt exist.  Getting up and talking to anyone but my husband is so difficult.  My best friend who is one of the most important people in the world to me has had to sit by while i dont text her back.  She comes to visit and i try to talk but i just dont have the words.  I dont know what to say and i dont have the energy to try.  My family surrounds me and is so supportive but i feel like i am just watching everyone else in there world.  Like i am standing outside the window watching in.  But thats where i want to be right now.  Im not ready to walk inside and be a part of things yet.  So please bear with me as you come to visit.  I love you and am so grateful for all of my wonderful friends family and neighbors.  I am just not ready yet.. and i dont think i will be anytime soon.

update on Capri

Today we were supposed to take baby C off the prostaglandin medicine.  Until we can get her off that medication we wont know much about her future.  When we came to see her however her infection had gotten worse and she wasn't very stable.  The drs told us they were going to wait until we got her healthy before we start taking off her meds.  One of the side effects of the prostaglandin is her body shakes.  I just wanted to bundle her up in a blanket and hold her tight.  she looked like she was freezing even though her core temp was right where it was supposed to be 98.6.  I sat with her holding her arms close to her chest to help stop the shaking.  She doesn't like to be stroked so when you touch her you just have to hold your hand still.  Do you know how hard it is to not caress your baby.  Its your instincts.
Tomorrow if she is stable enough they will do a spinal tap to rule out menengitus.  Hopefully we will get to wash her hair tomorrow as well. 

My Dad got to town today.  I can have the whole world around me supporting me telling me its gonna be okay but there is just something about having your dad be by your side. I feel at peace when hes around.  Daddys make everything okay.  I will never be to old to cuddle up in my dads arms and let him take the pain away.  I dont know what i would do without all of the family support we have had.  My mom came out the day i was admitted to the hospital and has been with us ever since.  My sister also drove 12 hours with her two young children to be with us not only when i was admitted but then had to go home and turned around a week later to come back when i delivered.  Mikes mother drove up to be with us in between work shifts. His dad has been keeping our kids for us trying to have some type of normal-some in there life.  Several of mikes brothers have donated to our medical fund to help us out with bills that are beginning to pile in. My brother has taken work off to help babysit kids and buys  us meals after we tell him not to.    I cant imagine what i would do if I didnt have my family.  I mean really, whos mom just drops her life and comes to live with you for a month plus to help out and just be there for support?  We are truly so lucky.

I did better today.  Not near as emotional.  Still not talking much but i am listening more.  1 day at a time is what everyone keeps telling me.  I;m working  on 1 hour at a time.  Maybe next month ill try the 1 day thing.  I cant wait to be discharged tomorrow and go home to my house.  Cuddle with my kids.  Lay in my own bed.  Mike went out to the house before Capri was born and put away all of the baby stuff.  Took the crib down, put the swing in the basement. packed the clothes back up.  We did this because we didn't think she was even going to live through birth.  Im still not ready to see all of that stuff.  Hopefully someday we will get to have the excitement of bringing all that stuff back up stairs.  The joy of bringing her home, not the sorrow of putting things away while planning her funeral. We're gonna be okay.  She is a fighter.  She has already made it longer than the doctors thought she would.  Now we just have to keep fighting

auto pilot

I don't really know where to start with this blog.  Yesterday was one of the most emotional days I have ever had.  I came in to be induced with the mind set that I was going to do it natural so I would be able to walk over to the NICU right away and see our baby girl.  I made it 12 hours and was doing okay, they hadn't checked to see how dilated I was for 4 hours however, and I was starting to lose hope.  Finally a dr. came in but instead of checking me she told me that it was getting late and they were probably going to try and have me wait until morning to deliver because they wanted a great NICU team on staff.  As I was sitting on the labor ball, my husband massaging my back, I broke down.  I couldn't do this for another 12 hours.  I wanted to see my baby girl.  My contractions were every 45 seconds and you are telling me that your going to give me medicine to stop them?? What was all this pain for then?  At that point I couldn't focus on my breathing I just wanted the drugs. 

After the epidural our Dr. came back in and said they had a great night team working that night and that they were ready for Capri. They broke my water and within 2 hours I was ready to push.
It all happened so quickly at that point.  Our room had been filled with family and friends there for support and hoping that little miss Capri would be okay.  Around 1030 the room was filled with around 10 people.  The dr came in to check my cervix so everyone waited outside.  She checked and said "lets have a baby".  Within 2 minutes the whole team was there and everyone was rushing around.  It happened so fast it was all kind of a blur.  We had our photographer from "Now I lay me down to sleep" next to me.  My husband with the video camera next to her.  5 doctors and several nurses around me.  They told me it was time to push and with the first contraction, 3 pushes we had our beautiful purple baby. I felt like the room was spinning I heard her squeak and remember thinking she's alive.  thank you God she's alive.  Mike cut the cord and they whisked her away.  I didn't get to hold her.  I didn't even get to touch her.  I laid my head on the pillow, stared into the window of the NICU and cried.  I cried and cried and cried. 
Its all real now.  Before, I thought I was ready.  I had prepared myself.  I had started planning her funeral.  I knew that my baby girl was going to die and I had accepted that.  But then I saw her face.  I saw her tiny hands and her head full of hair.  That is MY baby.  She is my blood, I created her.  You cant take her away from me.  I'm not ready.  I am never going to be ready.  This moment is supposed to be one of the happiest moments of your life.  I remember crying tears of joy when A and B where born.  These tears of fear are something I have never dealt with before.

Our family came back in,  Everyone was quiet.  I remember everything being blurry and all of the girls coming over to me 1 by 1 to give me a hug and tell me it was gonna be okay.  Every ones eyes were wet, makeup running down there face.

Today I have had lots of supportive texts and emails from friends.  We have had family with us all day long.  I have talked to lots of doctors about the next plan.  Thinking back on my emotions today.. the day was silent.  I repeated the same story over and over again.  We found out 3 weeks ago. Its so overwhelming. I don't know what the outcome is going to be. I'm okay. 
Truth?  I'm numb.  I'm not listening to anything your saying.  I don't want you to tell me its going to be okay.  I don't want you to touch me and hug me.  I'm in my little bubble and I will smile and nod and tell you thank you but I'm not listening to you.  I want to lay in my bed with my husband and cry.  I want to hold my kids and have my baby in my arms.  I want to feel happiness again.  Or even sadness.  All of my feelings are gone right now.  I'm numb. I don't want to think about my reality.  About my Childs new reality.  I don't want to hear the doctor tell me that if she does make it, its going to be a life of surgeries.  That the hospital is our new home.  I don't want to hear anything.  So I choose to tune you out.  Not because I'm rude or that I don't care.  But because I just cant handle anymore and this is the only way I know how to cope.  I'm on auto pilot

I am here for you!

7:30 a.m. rolls around and I have Kendra jumping up and down on me telling me to wake up, it's time to have a baby.  At first I thought that she meant she was going into labor, but then I realized it was more of an excited voice, and not so much of a "get up or I shall kill you" voice.

7:35 a.m. As I got out of bed, I staggered to the bathroom where I blasted the shower. I sat in the shower and let the water run down my head like a rainstorm. It felt so relaxing and was a great way to start the morning. As the water ran down my face it all hit me at once exactly what "today" was. In the next 24 hours, my life will be changing so fast, and there was nothing I could do to stop the storm. A feeling of panic started to take over, but then as quick as it came, it was gone. A feeling of calm, relaxed, and excitement replaced its spot in my head. It felt as though the water running over my head was spiked with energy, excitement, yet a hint of calm and it was absorbing into my skin.

I got out of the shower and got dressed and ready for the morning. I head to the lobby with Kendra and began to eat my breakfast before we are able to take off on our journey. Looking across the table into Kendra's eyes, I can see a fierce battle being fought before my very eyes. I can hear excitement in her tone, a twinkle in her eyes, yet worry in her smile and fear in her gaze, the rest of her expressions are expressions of the unknown. I quickly dig deep and trying to think of something to say to comfort her and help her feel as relaxed and calm as I do, but I had nothing. I felt helpless and I hated that feeling almost as much as I hated seeing her that way. This is supposed to be a time of happiness and joy, however this time it feels anything but. Feeling helpless, not being able to continue seeing her that way and no plan to sooth her fears, I look back to my eggs and potatoes and continue to stir them around.

8:20 a.m. is on the clock and it is time to go. We take a few pictures outside the hotel for a last minute memory. I pull the car around and we are off to the hospital.  During the 10 minute drive to the hospital, the sun light is refreshing, there is that wonderful feeling of a fresh summer morning and it feels good, very good in fact. The drive is mostly silent and there is that obvious feeling of consternation and it is obvious why. Arriving at the hospital I park the car and we start the walk to the doors.

8:40 we are in our room where the birth will take place. Kendra gets into her gown and lays in the bed, I sit in the chair and looking at Kendra, I behold a sight that is all too familiar to me.  As I take in a deep breath and look around, I take note of the large fridge in the room stocked full of medical supplies, liquids, and other miscellaneous packaged items. The hospital bed is at ready, I.V tube holders around the bed, and a small window in the wall that connects the delivery room to the NICU to get Capri to the right set of hands with no time to spare.  My mind begins to run on auto pilot as I feel as though I have no control over my thoughts and feelings. The last 2 weeks of my life have been filled with worrying, wondering, hoping, downright demanding answers as to what is happening, I need to know, I need answers, and today, I will get them. It is at that moment I realize this is real, this is happening and today is the day. The feeling of having such a life changing event, especially one involving a little girl I have come to love so much, I feel as though she is relying on ME, her dad to make her all better because she can't. How do I tell her, how do I tell myself in a way to help her and I understand that there is not a damn thing I can do to fix it, to help Kendra, to fix the damage being done to myself?  Anyone who is a husband and or a father can understand my feelings that it is my job to protect my family, to fight the battles they can't, there is nothing daddy can't fix right? well up until this point there has always been a way to provide that security to them and show them their thoughts are right. Not being able to fix something, especially something like this, I cannot help but feel as though I am letting them down, I am letting myself down, and most importantly I am letting Capri down when she needs me the most, when my family needs me the most. Describing those feelings would never be possible as I cannot even describe them to myself in a way to make that will ever be able to make sense of them.

9:10 .a.m. We have now met with several medical staff and went over more information, procedures, as well as Q&A. Friends and family are starting to arrive at the room and the tension is starting to disperse. All is going well until I look over at Kendra and she has tears running down her face. Asking if she is ok, she turns and begins to read a Facebook post from my sister-in-law Jairan. As Kendra finish's reading the post, the room is calm, silent, emotional and there is not a dry eye in the room. It was a wonderful post that brought tears of happiness which I have not experienced in far too long, it feels so comforting to know there are so many people that care about Kendra and have helped out so much and been there to help physically and emotionally, and I have the deepest gratitude possible.

 12:30 p.m. We are still here waiting, finishing up some pictures that are being provided by an organization called "Now I lay me down to sleep". The mood is much better in here as the feeling and scenery has sunk in. My mother has arrived, Kendra's sister, brother and mother are here and it is starting to feel, well..... comfortable.

weekend in wyoming

June 22nd 2013- We drove to Wyoming to see my beautiful cousin get married.  While we there I asked my sister who is an amazing photographer if we could run out and take a few pictures before baby C was born.  It was such a fun relaxing morning.  We drove on a road we probably were not  allowed to drive on, walked through cacti and watched the sky waiting for it to down pour on us.  Half way through taking pictures we were interrupted by some cowboys herding their cows.  It was a typical Wyoming weekend.  I remember holding my belly being so excited to take pictures to capture this amazing part of my life.  I LOVE pregnant bellies.  I think they are so beautiful and shouldn't be hidden away.  At the wedding I had person after person tell me I was going to go into labor there.  Being around family who was excited to share in our happiness.  It was a perfect weekend. 

Never in my life would I have thought just 3 days later I would be finding out news that would change my life.

I have had friends who have lost babies before they were born.  I have read other blogs similar to mine watching how hard it was on there families and the struggles they went through.  I have always wondered (and still do with my own child)  how is it that someone can love someone so much that they have never met?  How can there lives be changed and there heart be broken if they have never met this baby.  Never held them in their arms.  Never kissed there forehead.  I don't think it is something that you can really explain.  I have never met this little girl and yet she has completely consumed my thoughts in the last two weeks.  My heart feels like it is being ripped out of my chest and i know nothing about her.  I don't even know how to explain or justify these emotions to myself let alone to other people. 

Laying in the hotel tonight flipping through channels I stopped on Lifetime.  They were playing "my sisters keeper".  One of my favorite books.  I was never able to relate to the story before, just one of those make you cry kind of movies.  Watching it tonight realizing that that could be our new reality.  In and out of hospitals.  Always wondering when our next emergency is going to be.  Is A going to rebel against us to get attention?  Will B feel like she is not getting the attention she should have?  What is it going to be like living in and out of a hospital?  This waiting game is SO hard.  I just want to go into labor, meet our beautiful baby and know what the outcome is going to be.  Know what kind of life we are going to be looking at.  Whether that's a life of hospitals or a life of sorrow; knowing that we had to bury one of our children. 

This sucks.  Anyway you look at this, it sucks.  Im trying to be strong and I know there is a reason for everything, but why cant our future plans have one good option.  Why cant there be a chance of her heart just fixing itself??  Its not fair.

Two weeks ago my biggest problem was trying to balance work and home life.  Now I am wondering how I am going to balance work home and hospital life.  You can do this Ken.. be strong for your family

From the other half

Woke up today to the sound of my wife letting me know I only had 15 minutes until breakfast was closing for the morning. I knew I should get up and go eat something, but I could not find the energy or will power to remove myself from the comfort of my bed and return back to.. well... Life. As I reopen my eyes, I see that Kendra has brought me some breakfast from the lobby. I pull myself to a "lowest setting poolside lounge chair" position and ate my breakfast, and it was actually pretty good for not being that hungry. As I finish up my breakfast I laid my head back down to the sound of the TV on in the background. Again I find my eyes trying to focus as I am opening them again sometime later. As I look around I notice that Kendra and Baylee have fallen back to sleep as well, I realize there is only 1 thing to do. It did not take long to tell myself that I did not want to wake Baylee up before she is ready to wake up. I mean what kind of father would I be if I did not let my daughter get the sleep she so desperately needs? If I get out of bed, what if I step on a toy that makes noise, what if I trip and pull the dresser over and wake her up? After I realized I had to do what a good father should do I closed my eyes and was off to the place I have become fond of over the last few weeks. I do not recall any dream specifics, only a few flashes of something here or there.

 Amazing how life changes so fast and how my normal routine is now so different. I used to hate sleeping too late as I feel I am cheating myself from getting stuff done. I only have so much time in the day and there is no point in sleeping it away. However lately, I rather enjoy my bed time, and the clock is just a box with strange symbols on it that should have been designed to emit less light as I often mistake it for the early morning sun glow. It is the only place that I have no thoughts, worries, fears, or tears and that to me right now is priceless. It is one place I feel as though there is not a worry in the world, and everything could not be better. However when I wake up from my perfect world, sometimes it makes it harder to return to reality since the last 7 hours were so emotionless. Now that I have explained to you how my brain works I guess I can stop ranting on.

 It is what it is and then I realize that being awake is a good thing. The more time I am awake, the more time I can spend with Capri. Even though I cannot see, hear, or hold her, I do know she is there with us and she can hear me! Nobody really knows how much time I will get with my daughter, so I really do not want to take any B.B (before birth) time for granted.

 However I realize that I have quite the predicament to deal with. I want to spend all the time I can with my family as they are my everything, however I also need to have some time to recharge. Sadly the way that I recharge is by doing what I love to do which most times involves me, myself and I. Being alone while I work on my hobbies, my boat, build or fix something, or just browse a store full of ideas, and future projects like home depot. As I walk the isle, or work on a project, my imagination leaves the current events behind and is transformed into thoughts bursting with energy, happiness, and creativity, my mind is able to feel as though life is normal. I become so focused on my projects, there is no room for worries, fears, or any other kind of negative energy. It is this "me time" that is one of the only places I can turn my emotions off, and just be me.  Do I take the "me" time, and return energized and mentally relaxed, or do I hold off for now, and spend every moment I can with Capri while she is right here, right now?

 Well tried to test it out today as I got to take a bit of recharge time when I went to the marine store with my friend Alex. We drove to the marine store and I picked up a few small parts for the boat. Walking into the store it felt so good again. The sight, the feel, the smell, and the energy was amazing to say the least. After we were there for about 10 minutes, I was on my way back to the Mall to give Kendra the car seat for Baylee. It was short lived, but it was just enough to make a difference.  Kendra and I took the kids to the gateway for a family night out that was very much needed by everyone as we saw Despicable Me 2. The kids laughed, Kendra and I laughed and had a great time at the movie. I never thought there would come a time where a day of having 10 minutes of me time and taking the kids to a movie would be the highlight of my day, let alone be able to call it a "perfect day", but here I sit thinking just that.  Today was one of the first days in weeks I have had a lot of happy feelings, and almost no pain or moments where I feel as though I am breaking down minute by minute. Today in 3 words, relaxing, positive, normalcy

 

    

 

Other babies

More tests today.  Same as always, Capri's heart cant pass the stress test.  I don't know why they make me keep doing it.. she never passes.  Her BPP took her a little over 30 minutes so i don't think that technically she should have gotten the full 8 points but I also didn't really like the ultra sound tech.  I think part of the problem was her.

Afterwards I had an old high school friend come and visit.  People have asked me if it is hard to have other babies around me.  Seeing other parents happy, with healthy babies makes me anything but upset.  Why would there good fortune make me angry?  I would not wish the feelings we have had to deal with on my worst enemy.  As long as the moms let me hold and cuddle their little ones then I want to be surrounded by them.  Babies make everything better.

My brother and sister in law had a little boy 3 weeks ago.  We went through all of the pregnancy struggles together.  Suffering through the awful parts, dreaming about our "boys" (I was sure Capri was gonna be a boy) being best friends as they grew up together.  Playing sports together.  Watching our different parenting styles and seeing how the two of them differed.  I couldn't wait to have play dates and watch them reach all of there milestones together.  Now we get to watch baby K reach all of his milestones, go to all of his t-ball games and someday tell him about his cousin Capri.  His cousin that he never got to meet.  I hope that Capri will get to be in our lives long enough that we will get to take her home and take pictures of baby C and baby K together.   That we will still get to have some memories of the two of them. 

Playing with my friends twins it made me think of the life span of Capri.  If she dies right away we will never get to spend time with her and show her how much we love her.  If she gets to live a month we can.  But my little nephew is almost a month old and i look at his parents and how in love they are with him and how he has already changed there entire lives. Is it going to be even harder to say goodbye after we grow that connection with her.  Then i looked at the twins.  What if she makes it to 7 months?  look at their personalities, look at all of the milestones they have already reached.  I would LOVE to get 7 months with my baby but again, how much harder is that going to be?  what about 2 years old?  what about 7?  The cardiologist said she has seen a  few extreme cases lasting until teenagers.  A and B are my whole world.  Losing them would be more than I could handle.  10 more years of getting to know them.. I dont know how parents do it.  I dont know how i would be able to live a normal life afterwards. 

These are the things that i try to push deep down inside me and not think about because it starts a viscous spiral of  "what ifs" and each time i go there it gets harder and harder to come out

going back to work

Not much to report today.  Trying to live as normal a life as possible before our world turns upside down.  Doing better at pushing emotions down and trying to avoid them.  I had a small melt down while watching the kids play at a play place in McDonalds this afternoon however.  I am worried about going back to work.  When I introduce myself to my classes I always tell them my name, how long I have worked at Chrysalis and a little bit about myself.  Well my kids are a huge part of my life.  So moving forward, when Capri goes back to heaven what do I say?  I don't have 2 kids I have 3.  But the following question is always, oh how fun, how old are they?  Then do I say 3, 5 and one who passed away?  Do I make every single one of my classes have that awkward silence of not knowing what to say?  When people have answered that same question with that same response I have always wondered why they even say they have 3, why not just 2?  But I cant say 2, that would make it seem like she didn't exist, or I don't love her. 
In my classes I only see the same people twice a year.  Once for SOAR and once for CPR.  So the last 9 months of classes I have been telling people I am pregnant and we are not finding out the sex of the baby.   How many times am I going to have to relieve this memory and this heart breaking story?  How many people are going to remember it was a surprise and ask me what the baby was.  Do I tell them she passed away or just say she was a girl and hope they don't ask any more questions?  I am barely hanging on right now, I'm not sure I can re-live telling this story for the next year over and over again.
On the flip side, I work for a company that takes care of people with disabilities.  People who had parents in a very similar situation to me at one time or another.  Maybe this will help me to grow in my company because I have first hand experience.  I can share my story with staff to help them understand what it feels like to be a mom in this situation and why it is so important to help them live everyday to the fullest.  Because you just never know when they are going to take there last breath.  You cant take anything for granted and say you will do it tomorrow.  Your tomorrow may never come

angels in our world

I am a little late posting this today.  Last night we got back to the hotel around 10.  We gave the kids baths and tucked them into bed.  I sat down at the desk to start writing when I looked at there little faces cuddled up under the covers and couldn't concentrate.  I jumped into there bed and cuddled up with them around me.  Next thing I knew, it was this morning.
Yesterday was a some what normal day.  I went in for testing.  Capri passed the first test with 6 minutes to spare, and failed the second one miserably.  I don't expect her to ever pass the second test.  The dr told me to not worry about it though, her assumption is Capri's heart is working so hard to just stay at a steady heart beat that she doesn't have the energy to fluctuate up and down.  Afterwards We hung out with my mom and mother in law.  We bought B some summer clothes.  Something i have needed to do for awhile but I have been taking a Dave Ramsey class and was desperately trying to pay off credit card debt before i spent money on anything else.  Then we went to my father in laws for family dinner.  The kids ran around and played, it felt like a normal day.

Today I am so greatful for good people in the world.  So many things have in happened to us in the last week that has shown me the amazing side of people.
- A friend of a friend.. a friend who i have not seen in over a year, someone who I care very dearly about but life changes and with job schedules we have drifted apart.  This friend shared my blog  and one of his friends who lives 5 hours away read it.  She asked him for my phone number and contacted me yesterday afternoon.  She asked if we would prefer to stay in our hotel and she could get me an employee rate.  My eyes welled up with tears knowing that i could keep my family in one place and we could have some type of regularity.  Someone i will probably never meet just made my whole world.  And in changing my world, we called the Ronald McDonald house and were told there was a young family from out of town that desperately needed that room and they were so grateful that this had happened.
-My sister set up a donation fund to help us with the $10,000 debt we will be facing if little Capri doesn't make it.  People who i haven't talked to since high school have donated there hard earned money.  The generosity is something that I still cant believe is happening.  Again, people i have never met who have read our blog through my wonderful friends sharing it on there page have sent there love, prayers and donated money to help our family.  This experience has shown me how wonderful people can be.  

Strength of a sister

Sitting.  Talking.  Waiting.  Nurses. Visitors.  Sitting. Waiting.  Hoping. Waiting. 

For any of you who have been in the hospital for any extended period of time know the tedious schedule of sitting in a hospital room.  This post is from my perspective as Kendra's sister.  By now you all know the back story of how we came to find out about Capri health condition.   What you may not know is the great support and love of family and friends that mike and Kendra have.   With a phone call our mom was in the car and driving the 7 hour drive to be with Kendra without a second thought.  We have a pretty amazing mom who would move heaven and earth to do anything to help her children.  And an extremely supportive dad who is always willing to let his only employee leave at the drop of a hat to do so.  My girls and I drove the 12 hour trip later that evening to be with Kendra and mike.  Followed shortly by our brother taking time off work to be with them and help where needed.

Since we have been here the love for them has been overwhelming.  I wish I had a picture to show what her room looked like.  Pictures drawn and painted by her son and daughter and nieces  cover the walls and the back of the door.  Picture frames of her two babies sit right at the foot of the bed. Flowers line all the shelves and make the room smell like lilies, gifts of magazines, food baskets, teddy bears also line the room.  As we've sat in there for the last week the visits from all of mikes family, friends, neighbors, old coworkers, current co workers, it's been amazing to see the love that people have for them.

Growing up Kendra was always the fun loving one, lighthearted, didn't take life or things too seriously, or think to far ahead into the future, but then again I was always serious enough for the both of us.  I was the follow the rules, do as youre told kind of kid.  The grownup one.  This last week has shown me how wrong I've been and how when it comes to serious matters she is more adult than I will ever be.   As we've sat in consults with pediatric cardiologists and high risk OBs talking about percentages of survival and bleak outlooks, I sit in the room across from her watching as she asks the hard questions, facing life and death with the compassion and tenderness of a mother and the finesse and matter of factness of someone much older than 27.  As I sit in my corner wanting to cry choking back tears to stay tough for everyone else, and for her, she has to make decisions about life support, burial options, quality of life, and other topics that I wouldn't be able to handle or think about without sobbing.

I'm amazed at what a gentle yet tough sister I have.  Her strength through all of this while she is dealing with so many emotions and feelings inside, while outwardly she shows so much strength and courage.  

And while she is strong and so is her husband mike, the financial burden of things is starting to escalate.  We have had many emails, messages, and calls offering support and we haven't known what to say or do.  We recently found out about a support page where people that have offered support to help lessen the burden of the costs of specialty doctors, hospitals, hotels can donate to help them.   I felt I should share I here as this is where most of get your information on baby Capri and how things are going.  I won't hijack her blog again but wanted to share a little of my thoughts and the link or those of you that have asked and were wanting to help.  Staying strong and hoping for a miracle, love you Kendra and Mike and baby Capri!

http://www.gofundme.com/Fight-for-baby-Capri

Auntie Tandy 

freezing time

Mike had to go back to work today.  When I woke up I was alone.  Left with my thoughts, worries and hopes to circle over and over again in my head. Today was a hard day.  I woke up sad.  I didn't really have a specific thing I was sad about, just sad.  I tried to go back to sleep until my mom and sister brought the kids to see me. They can always make me happy.  They got to the hospital around noon, I was relieved to have someone there to distract me. 
The night before my mother and I were both sent emails/text messages from amazing friends who offered to help pay for a hotel room for us.  There are so many people in this world that have horrible, sad things going on in there life.  Why do people care so much about me?  I don't deserve this. I am at a loss for words from all the support we have been given.  After talking to my husband about it though and realizing how hard last night was when the kids had to leave the hospital we decided it was an expense we just needed to figure out how to pay for.  I needed my kids to be around me.  They make me who I am.  I met with a social worker from the hospital to see what we could do to find us a place close by the hospital.  She told us about the Ronald Mcdonald house and that it was affordable.  We just had to help cook and clean but our kids could stay with us. 

That sounds great, lets do it.  "Well there is a waiting list so you probably wont get in tonight.  Oh,  you live in Eagle Mountain?  You probably don't qualify" She went to check just in-case so I left to take a hot shower.

Hot showers make everything better.  Pressing my head and arms against the wall, breathing in the steam, letting the scolding hot water drip down my back.  There is something so calming about showers that just make you forget everything else in the world.  I hear a knock on the door and my vacation away from my brain is interrupted.  It was my sister.   The case worker came back and there was one room available.  She told us that this never happens to be able to get in right away and have a room big enough for our family.  We had to call and accept right away.  We load up the room and wait for my discharge papers.  I get to leave this hospital!!  I get to be with my children.  I get to sleep in the same bed as my husband!  All of these things i have taken for granted for the last 4 years of my life.  Words cant describe how excited I am.

Mike and I head over to the Ronald Mcdonald home while my mother takes my children to get some dinner.  After filling out pages of paperwork, agreeing that we will help with cooking and cleaning, that we have no diseases, and that we will spend time with other families that are staying there we go back to get our room key.  No such luck.  They reserved us in a room that can only hold 3 people and have strict rules about not letting anyone sleep on the floor.   I squeeze Mikes hand not knowing what we are going to do.  I cant go back to the hospital and say just kidding could you re admit me?  I cant go home, I live too far away.  What are we going to do?  Good thing I took that Dave Ramsey class and paid off our credit cards.  Time to fill them back up again.  But then the staff tells me that it was their fault not ours so they will put us up in a hotel for the night and we will try to  get a room there tommorrow.  I loosen my death grip on Mikes hand.  Ok, we have a plan for tonight.  We've been living on plans of 1 day at a time.  Whats one more day?  She sends us to the Hampton Inn by the hospital. 

This hotel is so nice.  I dont want to leave now.  There is no smell of hosptial.  No sick people around me reminding me of my new reality.  Just my husband my kids and me, all cuddling in one bed.  So happy to just be together.  Mike took the kids swimming tonight, and for 2 hours, I forgot about all of our stress. I watched my kids play with there cousins splashing, playing loving life. I held my belly and for the first time in a week, I felt Capri moving freely around. Kicking, rolling, playing.  Maybe her stress was because I was stressed.  Its been 4 hours now and she hasnt stopped moving.  Never in my life have i been so excited to be kicked in the stomach.  With every move my stress melts away.  If even for only a few days, I can pretend like everything is normal again.  I want to freeze time tonight and stay here forever.