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.

Our new home

I had a hard time sleeping last night.  Tossing and turning wondering what the outcome of Monday would bring.  I finally decided to write down my questions for our team to see if I could just get it out of my head and get a few hours of sleep
1. What all can you do to keep her alive?  In the beginning we want everything possible done to give her a fighting chance.
2. How long will it be until we can hold her?
3. If her lungs are able to ventilate, whats the next step?
4. What should we expect that day?  What are we realistically looking at?

530am Our first Dr comes in to check on me.  That really isn't fair that she comes at such a ridiculous time, I mean really, who can think clearly at 530 in the morning.  She told me we wouldn't be able to get all the drs together at once but we could meet with them one at a time. We would do several tests today and then decide whether I get to go home, get induced, or something in the middle.   My first test was at 8am and I had to have some sugar in me to wake her up.  Mike wheeled me to the cafeteria to get some super healthy, sugar coated doughnuts and a fruit smoothie.  By the time we got back to the room i was whisked away to the ultrasound room.  Same BPP test we do every other day. 30 min to get 8 points.  Pass the fluid check, Pass the diaphragm check, sweet just the easy ones left. She just has to roll over a few times and kick and move her arms.  10 minutes go by.. 15..20.. still no movements.  Heart is beating, she just wont wake up.  I turn to one side, then the other.  Push on my belly, shake it, talk to her telling her she needs to cooperate. Finally in the last few minutes she moves just enough to pass.   We may have passed the test but I am for sure not at ease with the results.

Once we get back to the room, our nurse lets me know  we have a meeting scheduled with the neo-natal cardiologist at primary's in 30 minutes.  My heart starts to beat a little faster.  Please God let this meeting go better than the first one.  Give me SOME hope.  Even if its just a little.  I don't know if I can take ALL bad news again.

When we arrive, we are taken straight to the conference room.  This is a new Dr, I haven't met her yet.  She went through the same spiel showing us pictures of the heart and how Capri's is a very severe case.  I wanted to know right away what are we going to expect.  I just spent last night talking about her funeral and what she was going to wear and how we were going to cope.  Give me some hope, please... please.
As she is born, the NICU team will be there and most likely ventilate her immediately.  The chances of her breathing on her own are very very small. Once she is ventilated they will "pass her through the window" to primary's.  Once there she will be given medicine to keep a vessel open that will help her heart get oxygen and she will most likely be on that medicine for a few weeks.
  Wait! A few weeks??  The last time I talked to a cardiologist we talked about a few hours.. I get a few weeks?!?! That has to be a mistake.  I ask what she thinks our chances are of Capri getting that far and having a few weeks.  She says very good!  What?!?!?  Positive news?  Somebody pinch me? I don't get good news anymore, this cant be real.  Okay, lets try for some more..
What happens after those few weeks?  Well that gets more tricky.  She cant stay on this medicine long term because it can have side effects that can be life threatening.  After a few weeks we will know how her lungs are doing.  We will try to ween her off things and see how she does on her own.  Most likely she wont do great.  That's when we look at surgery.  But surgery is good, right?  That gives us time?  Surgery completely shuts off the right ventricle, making it unusable.  Once we block it off she will never be able to use that part of her heart again.  The mortality rate goes up quite a bit when part of your heart completely stops working.

So long term; we get her through the first month.  She has surgery, she does okay.  Now what?  Pigs valve? Heart transplant?  What else can we do?  From here there is not a whole lot. We just wait, watch, hope and pray.  Mike asked if she would be able to live a normal life span.  The Dr. said she has seen a few cases as extreme as ours live into there teens.  Expecting anything more than that is not realistic at this point.

 I am at peace.  I am okay.  I get to have a couple weeks with my baby.  Maybe even a few months.  I get to hold her and kiss her and let her know how much her mommy loves her.  That is enough for me.  Every parent wants there child to have a long perfect life, filled with everything he or she could ever want.  Our little girl just might have to reach all of her life goals in the first 6 months of life.

We come back to the room to do another test.  A stress test.  We never pass this one. Her heart beat  is fluctuating but not much.  The OB comes in to talk about the plan for the next two weeks.  I'm ready to go home.  Ready to be with my babies.  Spend the rest of this pregnancy happy cuddling with A and B.   No such luck.  I'm told I need to stay in the hospital so it looks like my new home is this hospital bed.  My husband on a hard couch, hospital food for breakfast lunch and dinner.   I miss my children more than i could ever explain.  Having them come to visit for an hour or 2 a day is just not enough.  The tears falling from there little faces when they leave the hospital are tearing me apart.  I can feel my heart leaving with them.  I want my babies.