Sunday, June 30, 2013

birthing plan

I don't have a lot to write today, which is good cause I'm attempting to do this on a tablet. Most of the day was spent with my husband, sister, mom and A. We have had wonderful friends who have volunteered to watch our children while we are here. Tonight we met with a non profit organization called angel watch. We sat with a counselor and talked about our marriage and why we love each other. Why it was so important that we work together through this and not keep each other in the dark about our feelings. We talked about Capri and what our expectations were. What are hopes were and what our fears were. She gave us a bow and a gold ring to put on Capris finger.  finally, we talked about our birth plan. How much medical intervention do we want? When do we let her go? Who do we let hold her if she passes? Do we want this to be photographed? What funeral home are we going to use  and where would we like her to be buried.  How do we answer these questions? How do I pick where to bury my daughter? I wish my dad was here. He could make all of these decisions for me.  This is one of those times that living far away from home sucks. No matter how old I get I will always be a daddy's girl. He makes everything okay.

Tomorrow we will have more news and hopefully a plan.

Saturday, June 29, 2013

Stages of grief

Saturday, June 29

Last night while in the play area at primary children's I met a young man who was at primary's for a surgery.  He very proudly told us he was here for his 130th surgery.  He couldn't have been older than 13.
I got back to my room and it hit me that that could be our daughter.  She could live most of her childhood in a hospital. In and out of surgeries, always in pain, never getting the chance to have a normal childhood.  And what does that mean for my other 2 children?  What kind of mom are they going to have?  How do i decide where to be?  A's tball game? B's ballet recital? Or the hospital with C?  If something were to happen and I wasn't by Capris side i would never forgive myself.  Knowing that she took her last breath alone.  But A is already struggling with not having his mom around and its only been 4 days.  Is this my new normal?   I want to go back to the stress of should we take the kids to the planetarium or the water park. which place will they have more fun?   This is too hard.

I finally got to sleep and woke up this morning angry.  Angry at the world. Angry at the Drs. Angry at myself.  This isn't fair.  We don't deserve this.  We did everything right. I dont want to be here.  I don't want to deal with these emotions.  i want to push them all deep down and hope they just go away.    As I laid in bed looking at mike sleeping on the couch I was mad at him.  Why are you sleeping? Why isn't your brain filled with all of these things?  Why arn't you breaking down in tears every 5 minutes.  Why cant you express your feelings like I do?  Why do guys have to process things so different.  I want you to open up to me. Talk to me.

The nurse came in and asked me if i needed anything.  I was mad at the way she looked at me.  Her tone of voice bugged me.  I was just mad at the world.  I decided to take a shower to see if the steam would help my cough.  I put on pandora then turned the shower on as hot as it would go . I want to dig a hole and hide from everyone.  I don't want to face this.  Sobbing in the bathroom alone, crumpled on the floor Colbie Caillat singing in the background.  I know i should not be thinking about all of the "what ifs" but i cant help it today.  My brain just wont turn off.

Mike took me downstairs for breakfast and talked to me about everything.  He always knows how to melt my heart and make everything okay. 

This afternoon Capri had to do a test on her heart.  her heart has to fluctuate at least 15 beats 4 times in 30 minutes.  She has never passed this test.  Her heart rate stays right at 130-135.  After she failed we had to do a BPP.. another test but with an ultra sound this time.  With this one she has 30 minutes to pass 4 different tests. 1. how much fluid is around her (that ones easy) 2. her legs and feet have to move 3 times. 3. her body has to move 3 times. And 4. Her diaphragm has to "beat" for 30 seconds continuously.  That is the one we worry about because we don't know if she has lungs that are developed or not.  She took a little longer than 30 minutes but she passed. I get to keep her inside for at least two more days.  We will re test on Monday.

Monday is going to be a big day.  Capri has a test to make sure she has no more fluid in her chest or around her head.  If she does i will be induced.  I will meet with a social worker about getting moved to the Ronald Mcdonald house or possibly go home and play the waiting game.  We will still have to drive in daily or every other day for tests but i wont have to stay in the hospital.  And lastly we will meet with our entire team.  The neo natalogist, the high risk ob, the Chief of ped cardiology. We will come up with a plan of action and have them tell us what they are honestly looking at for when she is born.  I am anxious for this meeting

So far i have gone through Sadness, scared to death, shocked, optimistic, hopeful, angry, and bitter.  Tonight I am back to numb. As i lay here in bed I really dont have any feelings. im not happy or sad.  Im just here

Friday, June 28, 2013

explaining death to a 4 year old

Friday June 28th.

Since being in the hospital, waking up at 430 is my new normal. As the nurse comes in to check our sweet baby my mind fills up with thoughts and going back to sleep is impossible.  Today is a going to be a good day today. Today we find out the sex of the baby.

We have two other wonderful children. A boy, and a girl. With baby number 3 we decided we wanted it to be a surprise. We wanted that moment of the second he or she comes out we hear the doctor say "congratulations! its a ..." Well in the last 2 days our reality has changed.  The birth has changed from a joyous exciting moment of finding out the sex to a terrifying hold your breath kind of moment waiting to see if he or she has lungs.  Waiting to see if baby c can breathe.   With this news Mike and I decided we still wanted that exciting moment of finding out the sex so today is the day. we are finding out during one of the many tests.

8am comes and my chariot arrives (wheelchair.. I'm not allowed to walk anywhere) Time for the ultra sound. We have the same amazing ultra sound tech I had the first day. The one who explains everything.  She said she needed to check placenta and levels of things first then we would get  to the fun stuff.  Squeezing Mikes hand wondering if i should be this excited. He or she may only be a he or she for a few hours.. NO.. hold on to the hope. Be optimistic.  "Here is the heart, here is the stomach, here are the knees, here is the... IT's A GIRL!   Mike and i both looked at each other shocked. We have been calling her a him for so long. . There was no doubt in my mind that this munchkin was a boy. Mike asked her to double check :)
Turns out.. girls are better fighters then boys.  Girls lungs develop faster than boys. Girls ARE better :)  Little Miss Capri Diane Ware. You are a fighter Capri.. we can do this.

My day was filled with visitors from my wonderful family who drove 11 hours just to be here to sit with me in the hospital and wait to my amazing coworkers who brought me lunch and a gift basket. My brother and sister in law who brought there 3 week baby for me to hold and smell and cherish for even just a minute. My father in law and his girlfriend. My two amazing children. My other brother in law.  Being surrounded by all of the love and support has made this journey so much easier. As each one of you read this blog, email, write on my facebook or send me texts you brighten my day.  You make things just a little bit easier. 

Tonight is the night we talk to our 4 year old about what is going on with his sister. I feel like im ready, we can do this
We took him on a walk to primary childrens. Just him his dad and his mom.  We found a nice quite room and had him pick out his favorite chair.
Mom: So why do you think mommy is in the hospital?
A: because you are sick
Mom: well i have a cough but im not sick enough to be in the hospital. But someone is sick and thats why we are here.  Your baby sister is sick.  Very sick.  We need the doctors to watch her and make sure we try and keep her safe.  Do you know what happens when you are sick?
A: yea.. sometimes you burp. or puke. or you have to have a cough drop
Mom: yup, all of those things can happen. What about when your really sick? what happens then?
A: You die??
Mom: well yes, that can happen. Sometimes you have to go to heaven. And Your sister might go to heaven. Or she might need medicine or she might need surgery
A: Surgery?? but that will hurt her! shell have blood and guts.
Mom: yup, and that's why she has to stay at this special kids hospital.  Your baby sister is not going to get to come home with us for a long time.  She is going to need the doctors there to help her so she doesnt hurt. But we can visit her everyday and draw her pictures and do lots of stuff to help her to feel better.
A: like use our quiet voice and not be loud?
Mom: exactly.  Do you have any questions
A; yea, can we go to the play room now?

That went pretty well.  He understands the basics. He knows that mommy is okay and is not dying.  He knows that baby Capri is sick.  We used the D word and he was ok..

Afterwards he was extra snuggly and wanting to be close to mom. As he was leaving to go home with grandma he told me "mom i just wish i had a baby in my tummy that was sick so i could stay all night with you at the hospital".  I miss my kids. i miss our simple life with no worries

Thursday, June 27, 2013

putting a percentage on life

My husband finally got to the hospital around 11pm Wednesday night. after a much needed hug we laid, cried and talked about our new reality. 
Where do we want our family to be buried?
Is our life insurance policy up to date?
How are we going to be able to afford a burial plot?
At 27 years old these are question that never in my I thought I would be asking myself.  How do you answer those questions? How do we decide where to lay our precious baby down for eternity.

5am I hear a knock on the door. the head of  our neo natal team is here for our first check-up. this is mikes first time being able to talk with a Dr. Her first question was what can I answer for you? what can I make easier.  I asked .. more like pleaded with her to give me some positive news. some sort of hope that I could hang on to.  Her response: Ya know, in your situation that is really tough. The positive thing in this is that we found out early so you have some time to cope and prepare yourselves for what is to come.
That is not what I was looking for. That does not help. There has to be some hope, right?

11am. our next dr comes in for a visit. Her job was to discuss our reality.  How hard do we want to try.  is all of this necessary, me staying in the hospital, getting tests everyday, shots to hopefully increase lung function. Or do we want to just go home and see what happens. Here are my percentages: 
45% baby dies in utero.
95% chance baby dies within the first hour of being born
5% chance baby makes it and has lots of medical help
Im trying to be positive I really am, but how do you be positive with those stats?  If this baby has any lung function we will do everything possible to fight.  He or she is going to make it! they just have to.

2pm. My beautiful wonderful 2 and 4 year old come to visit. they jump up on the wheelchair cuddle up close and go for a ride.. Those two make everything okay.  No matter what happens I have my babies A and B. they will keep me together. As A was cuddling with me he looked up with a very sad look and asked "Mom, are you coming home yet" no baby, mommy is going to be in the hospital for awhile, but you can come and visit me every single day.  "mommy, I don't want you to be sick, I don't want you to die. please get better so you can come home".  My 4 year old thinks his mommy is dying?? How do I do this? how do I comfort him without worrying him more??  I assured him that mommy was fine and just need to be in the hospital to stay safe.  He hasn't asked about baby c yet. we need to have a plan and know how to handle that when it comes.  I am so lost in this department.

We are meeting with a social worker tomorrow morning from the Angel foundation.  They will hopefully be able to guide us in the right way to tackle this conversation. I just don't want my kids to worry.  They are to young to have to deal with a loss of a sibling. Baby C, please be strong for us. Grow those lungs and breathe. Just breathe. everything else we can figure out. we can deal with. You have to breathe though.  You just have too.

life changing news in 24 hours

Tuesday June 25th: 36 weeks pregnant.
I woke up that morning with a bad cough and a little fever. Of course the logical thing to do at that point is get on Web MD and figure out what is wrong with me, right? After a few minutes of research I had convinced myself that I had a pulmonary embolism and was most likely going to die.  One thing you should know about me as I tend to be a hypochondriac. Web Md is not my friend, yet I just cant stay away. 
I took my kids to there papas and went into work for a company meeting. Afterwards, I decided I needed to go into the ER just incase I really did have something serious going on. I started out in Labor and Delivery hooked up to a monitor. Baby's heart beat was a strong; 150. Yet it was not fluctuating. my machine looked like I was flat lining. A nurse came in and buzzed my stomach with a large vibrator looking thing. Baby C moved but not much. did it again for 2 seconds. again for 3. still nothing. Man this baby must be super tired!! At this point I went to the ER to make sure I was ok. didn't have a second thought about our baby, he or she was just sleeping.

When you complain of chest pain you get the royal treatment. I had drs in and out rushing me to do every test known to man. Started with an EKG: clear. Next, a chest x-ray: clear.  Next an ultra sound (which I found out later was to check on the baby not me). And finally a VQ scan where I was strapped down with a gas mask and had to breath in radiation for 10 minutes.. that was fun.. not. : clear

"Great news, you do not have a PE, just a common cold. Bad news, baby's heart looks funny so were gonna send you back up to labor and delivery."  This is when my world changed.

Back in L&D I was told not to worry, just getting some tests to make sure baby is ok. 10 minutes later I was told I was being transported via ambulance to the University of Utah hospital because the baby needed to be close to primary children's hospital where there were surgeons and neo natal experts on hand.  What is going on? My baby is healthy! I'm the one that was sick, remember? Baby has never had an issue. He or she is perfect.  Oh yea, did I mention that during all of this my husband was on a business trip in Boston. I was on my own. left in my room to deal with my thoughts and questioning what was going on with my baby.

Strapped onto a gurney in an ambulance with flashing lights. Rushing down the freeway; cars moving out of the way.  a sea of red and blue around me. So many unconnected thoughts.. what is going on?!?!
      Everything was fine..
                                            it was fine.

I got to my room and met with a neo natal surgeon right away. I begged him to give me some answers. What was going on? I thought the heart was just a little big? Why is that bad? just more room to love, right?  No one would answer my questions. over and over again I got well we need to do more tests first, then we can talk. at 4 am they finally told me to get some sleep and we would find out more in the morning. 6am the ultra sound tech was in my room wisking me away. She talked me through everything she was doing (if you have ever had a baby that is very uncommon, ultra sound techs never tell you anything) Brain looks great! fluid, awesome. 10 fingers, 10 toes. onto the heart. . silence. Whats going on? Is the baby's heart ok? Silence. God someone tell me what is going on! At that point she finally talked. she showed me the 4 chambers and told me they usually are all about the same size. My baby had one Giant chamber that was filling the whole chest. then 2 1/2 itty bitty ones that you could see if you looked really hard. Thy weren't like this at my 20 week apt. I remember looking at them. My baby was perfect.

Back to my room I go. Next plan was an echo then I supposedly was going to get some answers.  Within 30 minutes of being back in my room I was being wheeled to primary childrens hospital. 30 minutes of another ultra sound focusing on the heart. This was a typical US tech. any questions I had I was told you can ask the dr those questions. I just take the pictures. Next thing I know the Chief neo natal cardiologist was in my room. As he introduced himself he was very bubbly, very talkative. As he started looking at my ultra sound however, he got very quiet. I asked what he thought and was told, we will go to another room where we can talk about whats going to happen.
This is bad huh?? This isn't just a heart that is gonna have extra love.. This news is not going to be good.

Over to the conference room we go.  The dr. hands me a box of Kleenex. Shit, this is bad.. He pulls out a book of heart pictures. Tells me all about a healthy heart and how they function. next page is labeled "Ebsteins Anomaly". My eyes go straight to the second picture labeled Surgery to fix this condition. I let out a sigh of relief. Ok. Baby is sick, but there is a surgery that can fix it.. He or she is gonna be okay, right? Not so simple.
The Dr. showed showed us what a normal case of this anomaly looks like. the right atrium is englarged and the valve that normally closes off the atrium to trap the oxygen into the ventricle is not working. it is staying wide open so oxygen and blood are just circling back into the atrium. Everything got a little fuzzy at this point. my mind started racing of all the possibilities. how was I gonna tell my husband? how was I gonna tell my kids???
Then the Dr said, this is a normal anomaly. This is what your baby's looks like. He then proceeded to draw the right atrium twice the size of the already enlarged one.

My babys heart was broken. My heart was broken. So much information.. I'm on overload. I'm shutting down. I cant listen anymore. I want to go home.  I want to go back to yesterday when my baby was perfect. please God let me go back.  I called my husband and told him the news. He was at the airport trying to get home to be with me. He told me no I was wrong. He was looking this anomaly up. It said people can live normal lives, just a little more medically fragile. I was wrong.
My husband is 6'4 220 pounds, big guy. he is my rock. he is the strong one in our family, he holds us together. The phone goes silent. Did the call drop? no still connected. Babe, are you there? Babe?? I hear crying. Oh dear God if he is crying this really is serious. This is real.. this isn't watching someone else go through this, feeling sad for them but then holding my belly tight because this stuff doesn't happen to me. bad things happen to other people.  This is happening. its not a dream. I cant do this.

The rest of the day was a blur. Friends and family coming to visit, dr after dr coming into my room all telling me the same thing. Things don't look good. lungs have no room to develop. Baby most likely will not be able to breathe and can not be on a ventilator if there are no lungs to ventilate.  You need to prepare yourself. Baby is not going to make it.

How Can your life change so quickly in 24 hours. My world is upside down. How am I gonna do this?