coming home

2 months and 5 days ago my life changed.  When we found out Capris diagnosis we prepared for her death.
Day 1- She was purple, not breathing, lifeless. she was intubated and rushed to primary's
Day 8- She had her first heart surgery, placing a cathader into her heart and stretching out her pulmonary valve.
Day 28- She went into SVT then Vfib and had to be shocked twice and given CPR
Day 30- Her oxygen dropped down into the 50s, she was grey and lifeless, I thought we were going to lose her.
Day 40-We were told Capri had MRSA and needed to be moved to an isolation room away from all other babies
Day 50- Capri is being released from the hospital and will get to come home to be with her family.

In 50 days our world turned upside down, we were told our daughter was going to die and we needed to prepare for that.  We watched her suffer, cried at nights wondering if she would ever come home.  The thought of her coming home was something that I didn't think was going to be a reality.  But we are here and she is coming home.  Miracles really do happen.

We spent the day at the hospital "rooming in"  We learned how to use our oxygen tank, feeding machine, pulse ox machine, and stethoscope.  We discussed Capris future and signs of heart and liver failure.  We met with the pharmacist who showed us the extensive amount of meds she will need all day and all night long.  I have wrote these on a white board in our kitchen, have it posted in our room, and have it in my phone with alarms going off every 4 hours to administer them.  Trying to hold the syringe with the medicine, while kinking the feeding tube and opening the medication tube, then getting the medicine in there without it all squirting back at me is quite the experience.  Im sure it will get easier as time goes on but i sure could use a third hand.

After looking at all the meds, listening to the doctors talk about the oxygen tanks we will need every month, all of the supplies for the feeding tube and cannula, it made me very grateful for Mikes job.  He works at such an amazing company that cares about their employees and their families.  They have great insurance that will help us pay for the massive amount of medical bills we will have in our future. His boss has been so understanding, letting Mike take time off to be here to help me while we figure all of this out, I cant imagine going through this with some of the other places he has worked at.  Im worried about me going back to work in October.  On one hand I have to because we cant afford for me not to, but on the other hand I don't know how I am ever going to leave the house with all of this equipment let alone figure out a babysitter or a way to have Mike leave earlier and I work later so we don't need to have a sitter.  Why cant money grow on trees so that wouldn't need to be a factor.
In the end we will figure it out and make it work, we always do.  Capri is alive and she is coming home.  Nothing else matters

Things are looking up

Its 2am and I am just sitting down to write.  I spent the night making lists of what I need to do.  Get all the laundry done and put away, clean and disinfect the house, have someone deep clean my carpets, get invitations out for B's birthday and my best friends bridal shower, clean my car, clean the carseat, buy a LOT of hand sanitizer.  The list goes on and on.

Today was a good day

This morning was just like any other morning.  I got the kids ready for school, as I was driving I started crying thinking about having to ask for help at their preschool if Capri ever gets to come home.  After I picked them up I called our auto insurance to find out why our bill went up 20 dollars.  Half way through the conversation I started crying.  We got to the hospital and their were no volunteers in the play area so I couldn't go see Capri. As I watched the kids play and looked at the 3 other kids in the room, one with gauze on her neck from a recent surgery, one with stitches all the way down his head and a tiny 1 year old with a gauze patch on her eye from surgery.  As i watched the children I began to cry.  Finally I couldn't take it and I called my family dr.  I asked him what was wrong with me and what i needed to do to be normal again.  We realized that I started struggling last friday.  Last Thursday I had my OB appointment and got an IUD.  Before I left the hospital after Capri was born I got a deep shot that lasts 3 months.  I have twice the amount of hormones circulating through my body that I should have.  Its not that Im crazy its just that Im imbalanced :)

I took the kids to their papas and headed back up to the hospital.  When I got there my favorite nurse Vicky was in the room.  I looked at her and started crying.  She teared up as well and hugged me.  I told her I was done.  That I couldn't do this anymore.  I just wanted my baby to come home.  She smiled and told me to hang on for a second as she went to get the neo natal dr and cardiologist.  As we sat in the room they told me about there concerns with Capri.  She still is 6 pounds and is not consistently gaining weight.  She is stooping out a lot of her food which means she is also loosing a lot of nutrients.  Everything else is good though.  There are no other issues.  With most babies in the NICU they can not leave until they show that they can gain weight.  Heart babies however have their own set of rules.  She will always struggle with gaining weight and that is something that we will have to work closely with our pediatrician to make sure she stays healthy.  The Dr. told me that she has seen time and time again where babies cant grow so they send them home with the diagnosis of "failure to thrive", pretty much letting them spend time with their family until they pass.  But when they get home they do great.  They gain weight and they do what they are supposed to.  Being out of the stressful environment of a hospital and in the comfort of a home with mom and dad sometimes is the best medicine.

So what does this mean? Then the Dr. told me the best news I have had in over 2 months.  Lets watch her over the next couple days, teach you how to use all of her equipment and you can take her home.  I get to take my baby home.  2 months of stress and agony driving to the hospital everyday, having to leave my other children with babysitters, Its all ending.  She gets to come home!  We will still have to go to primary's a few times a week for dr apt's and to make sure everything is okay but she gets to come home.  Just as I was at my breaking point, where I didn't think I could go any longer we get what we have been asking for.  I wish I had the words to explain how wonderful today felt.  I haven't cried since i walked into Capris room at 230 this afternoon.  The weight that was pushing me down, making me feel as if i was drowning is gone.  Everything is going to be okay.

I spent the rest of the afternoon talking to the nurse about what kind of things I look for to know I need to call 911 vs just taking her to the hospital myself.  We started to talk about all of the machines that she will go home on and how I will need to take her temperature every few hours to make sure she is not to hot or to cold.  Either one of those will cause her heart to work harder than normal and could put her into SVT.  She showed me the pule ox machine she will need to be on all the time to monitor her oxygen.  And the stethoscope they will teach me how to use to listen for SVT.  How to check her belly to make sure her liver is functioning and what kind of things to look for in her stool.  The next 2 days is going to be a whirlwind of information that I hope to God I can remember.  

So now its time to hurry and get everything cleaned and ready for our beautiful baby to come home.  A and B are ecstatic that their baby gets to come home and they can hold her whenever they would like.  Mom and Dad are scared to death that we are going to forget something but just as excited to know she will be home with us.  What a change from yesterday.  My life truly is a roller coaster

I am breaking

I am back in my haze.  Not wanting to talk to anyone, or look anyone in the eye.  I want to lay in bed all day and just sleep.  I don't understand why I am back at this point.  I hate this feeling.  Im not sure what is worse, knowing that you are depressed but not knowing how to get out of it or being completely oblivious that something is wrong.  I have been asking other heart moms how they dealt with being in the NICU and emotions and home life.  I had several people tell me that I can have PTSD.  That is for people who have been in a war though, someone who has seen something traumatic .. not someone who has a sick baby, right?  I found a test on the mayo clinics website to see if I possibly had it.  0-3 you didn't 4-10 you could have PTSD and 10+ you did have PTSD.  I scored a 19.   Reading those questions made me feel better.  It asked if I had good days and then days where I couldn't get up.  If I suddenly yelled at people or cried out of no where for no particular reason.  If i kept replaying the trauma in my head.  I guess you can have PTSD with any form of trauma, even if the outcome ends up being good.
We got home from park city around 3 yesterday, I came up to my room, cuddled up to Baylee for the 20 minutes she would stay with me, and didn't get out of bed until the next morning.  I laid here watching the kids play outside, listening to Mike talk to the neighbors.  I knew I should get up and go be with them, or make dinner, or clean my house.  I didn't want to stand up though, when I talk I cry and I don't want to cry anymore.  So instead i cuddled up with one of Capris blankets, laid my head on my pillow and looked through pictures of her until I fell asleep.  I know Mike wants to help but he doesn't know what to do.  I can see in his eyes that he wants to say something, that he wants me to be normal again.  But he cant find the words so he leaves me be and goes back to play with the kids.  Before we fell asleep I told him that I needed to see a therapist.  That this has gotten to hard for me and I am breaking.  I have tried to be strong, to hold everyone together but I am falling apart.  Im not strong like people think.  I have used all the strength I have so I am checking out.  I need to talk to someone to help me get back to the coping phase.  Friends and family cant do that.  I can talk to them and tell them that things are hard but its not the same.

I have thought all day about this blog.  Trying to decide if I should share this with the world.  I have been depressed before but it was easy to hide.  No one needed to know because it didn't affect them.  But I have watched people very close to me struggle with a lot of the same things I am going through.  For me, reading other stories helps me realize I am not alone.  That it is okay to struggle the way I am.  So after a lot of careful consideration I have decided to share my story with the world.  The good and the bad.  To maybe help someone else see a therapist, or talk to a doctor about medication.  To know that its okay.

this isnt a dream, am I really strong enough?

This morning as I was getting ready I had the tv on in the background.  I heard someone singing and looked up to see what I was watching.  It was an episode of greys anatomy where one of the main characters who is pregnant gets into a car accident and they think she is going to lose her baby.
Rewind 46 days ago; the day after Capri was born.  Our photographer from now I lay me down to sleep had asked us to look up some songs that we would like to have on our birth story.  The first thing that came to my mind was that Greys episode.  I remember searching you tube all morning trying to find it so I could give her some of those songs.

As I sat on my floor I felt like a ton of bricks just fell on top of me.  My mind flooded with memories of being in labor, trying to have normal conversations but being scared out of my mind.  Capri being born and then whisked away before I could hold her.  Laying in my bed watching all of my family and friends around me but not being able to hear anything they said.  Everyone crying.  As these memories came back my chest got tight.  I started crying and couldn't stop.  All of the sudden everything was real.  I have been in auto pilot for the last 2 months just doing what I needed to do to get by.  In a blink of an eye everything became real.  It all hit me at once.  Ashton came running into my room, laid his head on my lap and asked me if I was ok, then if i was crying happy or sad tears. All I could say was "I don't know".  He looked up at the tv show and told me it was okay, the show wasn't real, it was just pretend. 

I couldn't make my brain stop.  I started thinking about our future.  We wanted to take the kids on a Disney cruise in 2 years, we cant do that now.  If we take Capri what happens if she has a medical emergency?  Cruises are not equipped to handle something like that.  If we left her at home and heaven forbid she passed away, no one could get a hold of us.  And if they did get ahold of us, what would we do?  We would be in the middle of the ocean.  Taking the kids to preschool, how am I going to help 2 kids get to class while holding a carseat, an oxygen tank and feeding pack.  When Mike goes on business trips how do I go to the store to get groceries?  Getting away for a date, how can I put that kind of pressure on any of my friends or family to watch her?  What do I do while Im driving, what if her oxygen gets to low and I don't know because her carseat is facing away from me.  It wouldn't stop.. I felt like I was drowning.  I sat down to meditate and clear my head.  After my panic attack was over Mike and I went into town to spend a night in park city to celebrate my best friends birthday.

We stopped by the hospital just to check in on Capri and make sure everything was okay.  When I got to our room I asked the nurse what i needed to look for on my other children to make sure they havent gotten MRSA from Capri.  Before I could even get the sentence out I started crying.  I haven't done this in several weeks, what is wrong with me?  I couldn't talk to the nurse and finally had to put Capri back in her bed to calm myself down.  Is this what my life is going to be like from now on?  Will I always have these panic attacks?  I don't know if I can handle this.  I don't know if I am strong enough.

Now we are in Park city and had a wonderful night with our friends.  From having a glass of wine at a pub, to walking down to a steak house for dinner, to realizing that steak house was way to expensive and we couldn't afford it, leaving the restaurant with the walk of shame because everyone in there knew why we were leaving and back up to the pub for a dinner that was more our style (and price).  It will make for a great story though!  I am so lucky to have such an amazing best friend who has been by my side through every good and bad part of my adult life.  I cant imagine doing this without her.

Amazing doctors

I had my 6 week appointment with my OB today.  6 weeks of being at primary's, 8 weeks of being in the hospital.  Why does is it feel like 6 years?  When we found out we were pregnant I went to my OB that delivered Baylee.  After 20 weeks I decided I just wasn't happy with him because he was so busy he didn't have time to answer my questions or call to check on me when I had an emergency appendectomy.  I asked to be switched to his partner and am so grateful that I did.  He is amazing.  Both him and his nurse sat in the room with me talking about Capri, truly interested in what was going on with her.  Most doctors rush you in and out and barely remember your name.  Dr. Porter remembered everything about me and has been following Capris case since she was born.  finding a great dr makes all the difference!

Capri is now in her isolation room which is actually really nice.  We have a little glass room that is away from everyone else so its quite.  The nurse sits on the outside of the room so we can be alone with Capri.  Unfortunatly she may have to move back to a regular room tomorrow.  Apparently when they took her culture 30 days ago it came back negative for staff, then for some reason someone said it was positive.  They now think it was another babies culture they read and not Capris.  They re tested her this morning and if its negative we will move back to her old bed.
she is still struggling to gain weight so they have bumped her up to 24cal formula.  Tomorrow they are going to try and pull her nj tube out of her intestines and put it back in her stomach to see how she does.  They also are going to take out her pic line because of the risk of infection.  She had 2 episodes of SVT last night but was able to correct it when they put ice packs on her.  the cardiologist upped her propananal in hopes that will stop the SVT completely.  Hopefully after this weekend she will be more stable and we might have more of an idea of when we get to take her home!

Isolation

A and B had there first day of preschool today.  I have been prepping them for months, helping them to be excited about school and not afraid.  This morning A had a small meltdown worried about me leaving him there alone.  When we got to school though they both ran into their classrooms and started playing.  Neither one had a second thought about mom or dad.  I left the school got to the parking lot, looked at Mike and burst into tears.  This was not an emotion I was expecting.  I was so worried about their feelings that I never processed how I would feel.  Both of my babies are growing up.  School has started and wont end for the next 15 years. Then they leave for college.. I am not ready for this.  I love having them home with me, they help distract me from the other things going on in my life.  They loved preschool and were so excited to tell me about their day.  Preschool will be a great thing for them and they will learn so much.  The structure of going to school 2 days a week will help them to feel a sense of normalcy so even though its hard for me, I am so grateful we are able to send them to such a great school.

When we got to the NICU Vicky asked me if I had talked to the nurse practitioner.  I had a voicemail from her but hadn't listened to it sense I was at the hospital.  She informed that a blood culture had come back from Capri's nose that tested positive for methicillin-resistant staphylococcus aureus.  Its a really long name for what seems like a pretty minor problem.  Its a bacteria in her nose that cant be killed by normal antibiotics such as penicillin.  Because she is in the NICU with babies all around her that have immune issues she was moved to an isolation room and will stay there for the rest of her stay at the hospital.  It is a little glass box in a room with no windows and no other babies.  The positive side of having to move to isolation is she will have a nurse all to herself from now on and it will be much more quiet.
She also had an echo today that looked very promising.  Last weeks echo the cardiologists were pretty sure Capri would need surgery very soon in order to live.  After being on viagra for a few days her valves have opened up and the blood is flowing through the pulmonary valve again instead of backing up into the right atrium.  I asked Dr. Grey if that meant we aren't looking at surgery until she is at least a  year old.  He said no, it means she doesn't need surgery tomorrow.  We still have a long way to go but today, this week she looks good.  They also took her off of her IV fluids today which is a huge step.  If she does well on full feeds of breast milk and can gain 2/3 of an ounce a day the hope is that she will get to come home at the end of September.  Today is 8 weeks of being in the hospital, hopefully 4 more weeks and we can get out of there.
4 more weeks... I can do 4 more weeks...

family time

We spent this weekend playing with our other two children and getting them ready for preschool.  Saturday we took them to Lagoon (a local amusement park) courtesy of the wonderful company I work for.  I thought it would be nice to spend a day forgetting about the hospital stressors and just enjoy beige with our family.  It was great to watch the kids run from ride to ride and be able to do whatever they wanted.  Every baby I saw however made me sad.  I cant forget the hospital stressors.  Until my baby girl gets to come home that will always be on my mind.
Since they have put the nj tube in her intestines she has done a lot better with feedings.  She still is spitting up and every once in awhile small amounts of throw up but what baby doesn't have that?  She breast fed for 10 minutes today which is the longest she has ever gone.  She is up to 40ccs every 4 hours so we are almost to full feeds.  Maybe this time we will actually be able to stay there.

The kids start preschool next week.  This is the first time either one of them have gone to school.  They are so excited and cant wait to go learn new things.  I am excited they will have some since of normalcy  in there lives, something that they haven't had in awhile.  We are coming up on 2 months of living in a hospital.  I keep saying I want things to be normal again and have a routine.  Going to the hospital has become our routine now and it is starting to feel normal.  I discovered the ronald mcdonald family room last week.  They have food and drinks in there that we can go and eat whenever we need.  That is a huge help as far as bills go.  Not having to pay for food everyday will help tremendously.  I have been bringing snacks with us but there are not a ton of healthy snacks i can bring that are ok to not be refrigerated for long amounts of time.  I am going to bring vegetables from our garden to donate to the center so I can at least help a little bit.  This is such an amazing hospital and I am so grateful we have one in our area.

I hope that as the following weeks come each day I will have less and less to write as Capri finally gets better and is able to stay better.  Wish us luck!

with every up there comes a down

Our kids came home today so this morning was my last day to sleep in.  I slowly got ready, taking my time trying to relax.  The plan was to meet my best friend for coffee then head up to the hospital.  I stopped to get gas on my way into town.  As I got back into the car I had a missed call.  801-662... not again..

I called the nurse and she informed me that Capri went into SVT last night and was still continuing to throw up every feeding.  They were taking her down to radiology to put a tube down her nose and into her intestines.  The hope is if they bypass the stomach she will not throw up as much.  She also told me that her last echo showed that her heart had enlarged quite a bit.  It was back to her original size of when she was born.  I hung up the phone, let Mike know what was going on, called Chelsy to cancel coffee and rushed to the hospital.  I am trying so hard to hold back the tears but there is no end in sight. I feel like we are never going to get to leave the hospital and she is never going to get better.  I started to have an anxiety attack and had to pull over.  After a few minutes I felt better and finished my drive to the hospital.  

When I got there Mike was sitting in her room holding her.  The nurse was explaining to him that this wasn't really a set back its just a different outcome.  Instead of bringing her home with just an oxygen tank we will also bring her home with an nj tube.  As she gets older and gains weight they will put a Gtube into her stomach with a cathader into her intestines.  She will most likely have to eat out of a tube until she has her next heart surgery.  I asked the nurse about the new heart medication she is on, she laughed and said it is actually Viagra.  When viagra was first developed it was a heart medication that helped to open up the valves which makes it easier for the blood to flow through.  In the trial however the males that were taking it were more happy with the side effects then what the drug was intended to do :)  When Capri finally does get to go home she will have a whole stack of pills to come with.  She will be on 3 different medications for her heart, 1 for her liver, 1 diuretic, a calorie supplement and possibly a potassium supplement.  So many medications for someone so small.  

Our potential go home date has been pushed back again for at least another month.  She is going to get home just in time for me to have to go back to work.  We were planning on saving all of this money on gas while I was home for 12 weeks to try and pay off my car.  Instead we are spending 4 times as much.  

My munchkins are home tonight and I am happy.  After a long exhausting day I am snuggling with my other 2 children so grateful that they are home safe and healthy.  With every set back there is a silver lining.  I am just going to look at the positive and try to ignore the negative.

Teaching doctors/ changing lives

58 hours and no SVT.  She is doing it. The medication is working.  Holding her, she is so happy.  She's not in pain anymore.  She smiles and coos and grasps on to my fingers.  My dad came to Salt Lake today for a few hours and got to hold Capri for the first time.  I am so glad he was able to come and be with her.  My dad makes everything better.  If he holds her maybe he will make her better too.

Dr. Good came with his class today to teach them about Capri.  They all got to listen to her heart and feel her liver.  They talked about what Ebstein's is and the different types of heart failure conditions.  We showed them her X-rays and talked about her odds of surviving.  It was a great feeling to help teach future doctors.  Before this happened I had 0 knowledge of anything medical.  Today though, as the professor was asking his students questions I knew all of the answers.  I have learned so much in this last month I feel like my brain is going to explode.  Watching all of the students faces inspired me.  You could see the eagerness in there eyes.  They were soaking in everything the teacher was saying.  Absorbing all that information.  Looking at them though, you could see the sadness they felt as they looked at Capri.  They know the odds.  They know the scientific side of things and the scary road we have ahead of us.  We know the odds she has already beaten though and the miracles we have witnessed.  We will never know how long we have with Capri.  It might be 2 months it might be 50 years.  Because we know this everyday is precious.  Every kiss, every hug, every touch.  I will never know when its the last so I hold on to each of them.  Leaving the hospital gets harder and harder everyday.  Every night I look at her crib and my heart aches because she's not in there.  She is alone in the hospital without her mom there to hold her.  We missed out on the first month of her life, and most likely the second.  By the time we get to bring her home she wont be a newborn anymore.  She needs to get better, this isn't fair.

This little girl has changed so many lives.  A blog that I started to just help me cope and get through day to day has been read by thousands of people.  When I logged on today it showed that we have had 76,000 views in just over a month.  This is amazing to me.  At walmart the other day I had a women come up to me and ask if I was Kendra, Capris mom.  She told me about her family and how she reads my blog everyday and how it has changed the way she interacts with her family.  My dad has told me several times that every single store, restaurant and business he goes into he has at least one person stop him to ask about Capri and our family.  A local LDS church in our town has mowed our lawn, cleaned our house and helped us pay our bills.  They are setting up a fundraiser around our town selling cupcakes to help raise money for a gas card to get us to and from the hospital.  My sister set up a donation page to help us with medical bills where we have had so many people contribute to our expenses.  I have never in my life been in a situation where I needed to accept charity.  It is not something that is easy.  I want to be able to fix everything myself but I cant here.  I cant make it all better.  Having so many people help lessen the burden of financial issues has been such a tremendous blessing.  This is something we will always be grateful for and as soon as we are in a more stable spot we will pay it forward.  We will help another family in need and help lessen there burden.  I can not wait until that day is here.

good news

Today my beautiful cousin Bree came to visit and meet Capri.  We met for lunch at city creek before heading up to the hospital.  As I was explaining to her what has been going on with our daughter my phone rang.  I looked down and saw the 801 662 number.  I told the nurses to only call me if they had to shock Capri and she was in danger.  Again, my heart in my throat, I cautiously answered the phone.  The nurse asked if I was coming in today.  I told her yes and asked if everything was okay.  She laughed and said everything was fine and she was calling with good news.  Yesterday Capri had 6 episodes of SVT before 1pm so the cardiologist decided to add propananal to the flecainade to see if 2 heart medications would help. It had been 24 hours since the med change and Capri did not have any episodes!  Knock on wood but I think  we found the right dosage.  I was with her until 9pm tonight and she was fine.  No issues.  Tonight will be one week since this all started.  It feels like its been a month.  My weeks seem to be getting longer and longer.

With her SVT hopefully under control our only task left is eating 120ccs out of a bottle.  She drank 20 today which is the most she has ever drank.  Unfortunatly she threw it all up 30 minutes later.  We are seeing progress and will hopefully continue with this and will be able to take her home soon.

I needed this good news.  Everyday its getting harder to do this.  My body is getting more tired.  My emotions more drained, my conversations more short.  I am so tired.  A tired I have never felt before. One that doesn't get better after a full nights sleep or an afternoon nap.  I needed good news to help me get through one more week.  I am just so tired...

neighbors

Today was a good day.  I love being able to start a blog with that sentence.  This last week I haven't been able to say that.  Capri had 3 episodes of SVT but the medicine is kicking her out of it every time and we have noticed that she goes into the episodes within an hour of her next dose.  Hopefully her cardiologist will up her dose one more time tomorrow and that will be enough to keep her out of them.  I laid with her today skin to skin for several hours.  She fell asleep as soon as she laid on my chest.  Listening to her breathe holding her tight i closed my eyes and it almost felt like we were out of the hospital.  Laying at home in our bed cuddling holding our new baby.  I can not wait for that day.

We started her feedings again today.  She is only getting 10ccs but we got to feed her from a bottle and she drank the whole thing with no problems.  She didn't gag or throw up.  Her thrush is clearing up and my hope is that eventually when we get back to full feeds she will be strong enough to take it out of a bottle and we will be one step closer to bringing her home.  My stomach is hurting more everyday but I web md'd it and im pretty sure its just a herniated belly button.  Whats one more surgery this year?

We got together with a few of our neighbors tonight, just like old times.  We spent the night joking, laughing and talking about regular life problems.  It was so nice to spend the whole night not worrying. For a few hours forgetting about our life and the life changing struggles that we are going through.  Joke fighting about going to the gym to be more in shape, and who should clean the house or watch the kids.  Things that 3 months ago would have probably turned into a real fight later when we got home is something now that we can laugh and joke about as we hold hands and know to not take it seriously.

It is amazing how something so terrible can happen to our family yet it can bring us so close together.  I remember shortly after we found out about Capris diagnoses the social worker sat down with us and spent an hour talking about how important it was to stick together and talk about everything because stuff like this tears families apart.  We have had to learn how to lean on each other and appreciate each other.  I feel like we are newly weds again excited for every moment we get to be together.  I am so grateful for our friends and neighbors who have helped us to get through this and stuck by our side.  It makes all the difference to have so many people here letting us know they care and are worried about our family.

1 month old

Capri is one month old today.  Walking into the hospital, this is the first time Mike has seen Capri in a week.  As we walked back to her bed, again she was surrounded by nurses and doctors.  Looking up at her monitor her heart rate was 175.  She was in SVT.  They were hooking her up to an EKG to watch her heart as they administered her heart medication.  They gave her the meds and within a few seconds her heart rate dropped back down into the low 100s.  This roller coaster feels like it is never ending.  I want her to get better.  I want to go back a week ago when everyday was an improvement.  I am exhausted.

Grey baby

I brought A and B back to tell there sister goodbye before they left for a week long vacation to wyoming with grandma.  When we got to Capris room she had 3 nurses around her and her alarms were flashing red.  One nurse asked me if this is the color Capri normally is?  I looked down at my sweet baby and she was grey.  She was trying to cry but she was gasping so hard for breaths that her cry were muffled.  I told her no that wasn't her color and looked up at her monitor to see that her oxygen was in the 50s.  I have never seen it that low.  Soon after we got there our nurse came running back from lunch and started cranking up her oxygen, picked her up to get blood circulating and called the cardiologist and neo natal dr to get there quick.

i frantically took my other children back to the waiting room.  A was crying because he didn't get to hold his sister and tell her goodbye.  I threw them into the waiting room, told my mom Capri wasn't breathing and ran back into the NICU.   When I got back her oxygen tank had been turned up as high as it would go and she was still in the high 50s low 60s.  They had me hold her to see if i could get her to calm down and breathe.  I wrapped her up and held her close to my chest.  Looking down on her i could see her gasping for air and her chest working harder than i have ever seen it work.  Xray came to her bedside to take pictures of her lungs and make sure they were okay.  The respiratory therapist came over and changed her cannula to a high flow one so they could give her more oxygen.  Cardio came and did an echo.

My mom was still in the waiting room with my grandmother and children.  i texted her and let her know they could come back and say goodbye because they needed to get on the road and these tests went going to end anytime soon.  The kids came and sat with me, held her and kissed her and told her how much they loved her.  I put Capri in her bed so i could hold my other babies before they left.   I have never been the type of mom that worries about something happening to my kids.  I have always known they will just be fine.  Since Capri I over worry and am afraid to let anyone watch them.  The 8 hour drive it took them to get to wyoming I spent worried and stressed that something was going to happen. I hate this feeling of worry.

After my family left i sat back down with Capri and realized how tired i was.  That last hour of watching her not be able to breathe took every ounce of energy out of me.  I could barely keep my eyes open.  Her oxygen was back up in the 90s and her heart rate was starting to go down.  I laid her on my chest and fell asleep.  About an hour later the dr.'s woke me up.  They had looked at all of her tests and everything came back normal.  They don't know why she couldn't breathe.  They always chalk it up to, "well sometimes these things just happen in ebstein babies" After they left the nurse and I were talking about why she is having these and how its funny that she just snaps herself out of them.  Then I looked at her monitor and her heart rate was 175.   She was in SVT.  I have never been with he during one of these episodes.  I looked down at her and she was quietly sleeping.  If I didn't have the monitor i would have never known something was wrong.  The nurse called the dr.'s back and they told us to watch her and try to wait 20minutes before giving her any medication.  I held her close as my eyes were glued to the monitor.  About 10 minutes into the tachacardia her heart rate suddenly dropped to 70 and she went into bradychardia.  She then slowly brought herself back up to the low 100s and it was over.

I cant wait to get our baby home so we can stop having to drive 3 hours a day.  So I can lay with her and cuddle her with out getting tangled up in all her wires.  So the kids can be with her for longer than 5 minutes.  That being said I am SO glad she is still in the NICU while all of this is happening.  I hope that the dr.'s will figure out why she is suddenly having so many issues and will be able to fix them soon

Back at it!

Since Monday at 3:00 I have been unable to see, hear, and hold my daughter Capri. I have had the last 6 weeks off from traveling for my job, but my time has run out. Monday I boarded my first flight to another agency to continue to projects. By the time I boarded my flight I was already missing my family, and was hoping that everything would continue to be great while I was gone. Once I landed and got to my hotel, I started to adjust to the travel life. Being by myself, having time to relax and think has not happened to me for quite some time, and it is very much needed. It started to feel normal and in a way good.

By Tuesday I was trying to get back to focusing on work again, but that was easier said than done. It turns out that it is much harder to go 24 hours without getting to hold Capri and just sit in a chair and watch her sleep than I thought. By Wednesday I am being told that she is starting to have issues with her heart, as it keeps doing something that it should not. Kendra told me on the phone about it and it was called something like kdymsktjftydkfnmcosnf, or maybe it was another medical name. Whatever it is called, it is abnormal and something that should not be happening. As I sat there at work I thought to myself, of coarse it had to happen while I was out of town. Adding this to leaving her for a week in the hospital and it was really starting to pile up on me.

It is now Thursday, and I am told that over night she had more issues over night. They are starting to become more frequent. I keep telling myself that it is fine, and I need to be able to get home as I am sure it is just her way saying that she wants me to come home. Tomorrow I board a flight at 5:00 p.m. and will arrive in Salt Lake at 10:00. I am very excited to get home and see my baby and my wife (in no particular order).

this has been a testing period, not to mention a difficult trip to say the least. I just want to get home and make sure everything is good, then I can finally rest.

2am phone calls

2am: I woke up startled hearing music, looking around i realized it was my phone.  801-662... thats the NICU.  Why are they calling me in the middle of the night? I answered and heard the nurse practitioner on the other side.  She has a very strong Australian accent, that added with being on a phone and it being the middle of the night I was struggling to understand what she was trying to say.  After having to repeat herself several times I finally got that Capri had had another arrhythmia episode.  Her oxygen dropped to a dangerous level so they had to bag her for around 10 seconds.  They gave her medicine and she was able to correct her heart on her own.  This is the 3rd time this has happened.  The first time she was able to correct it on her own, the other time she had to be shocked.

After I got off the phone I turned to wake Mike up and let him know what was going on.  Instead I woke up Ashton who had crawled into bed with me.  I forgot that Mike was in California, he wasn't here.  I sent him a text hoping it wouldn't wake him letting him know what the nurse had said.  After a few more hours of tossing and turning, thinking about the worse case scenario, I was finally able to fall back asleep.

This morning we played with the kids and slowly got ready.  The professor was bringing his class in at 3 and I wanted to be there to be a part of it so I was waiting to leave until 12.  We left to go get lunch and on the way my phone rang.  801-662... My heart is back in my throat.  I answer and hear a different nurse this time, one I don't know.  She is the charge nurse calling me to give an update.  The first thing she said was Capri is fine so don't worry.  I let out a sigh of relief assuming she was just going to tell me about last night.  She then proceeded to tell me that Capri has SVT tachacardia, this afternoon her heart rate went up to 220 so they gave her the medicine again to stabilize her.  It didn't work and she went into V-fib.  They shocked her heart to try and fix the rhythm.  Nothing.  They did compressions then shocked her again.  Her heart rate started to go down and slowly went back into that smooth rhythm.  They upped the dose of the beta blocker they put her on this morning and gave her a sedative to help her recover.  She let me know that the cardiologist would be doing an echo soon and they were going to try and figure why she is having these episodes.

I stayed calm and didn't cry through this conversation.  2 weeks ago i wouldn't have been able to do that.  In the back of my head though, I was telling myself you knew this was going to happen.  They have told you time and time again Capri shouldn't be doing this well.  Ebstein kids don't live very long. There is a good chance we are only going to get a month with her.  I hope more than anything that our miracle baby will continue to beat the odds and live a long healthy life, but I know what our odds are and every day is going to be one that we cherish because we don't know when it will be her last.  I called Mike who is on a business trip to California to let him know.  The last time he was at this agency was when I had appendicitis..We do not have great luck when he goes to California.  He was very calm  and gave me a few questions to ask the doctor, one of which was to find out if the thrush medication we started her on 2 days ago could be related to these episodes.  I told him I cant imagine that they are related but i would ask.

As we got to the hospital I went straight to Capris room while my mom and grandmother took the kids to the play area.  I got to the room and held her close to me.  She is covered in tubes and wires, her chest still had the shock pads on.  She was still sedated, looking at her limp body flooded my head with memories of her first week of life.  Every minute wondering if she was going to make it, feeling helpless not knowing how I can help her.  I met with the Cardiologist and she told me the echo came back and looked good.  No significant changes that would cause this.  Ebstein kids have a high chance of arrhythmia and it could just be that her heart is finally healed from the first surgery and is now mis firing.  They also have a 30% chance of having an extra valve that could cause this but the only way to know is by doing a very invasive test that they don't do on infants unless it is absolutely necessary.  She was very optimistic that the beta blocker would fix the problem and we wouldn't have any more episodes.

I asked the Neo natal dr about the thrush medication and she sat and stared at me.  She started to speak, then stopped.  She said that was an excellent question and she hadn't even thought about that.  She would go look up the side effects and see if there was anything in the medication that could be related.  A few minutes later she came back and told our nurse to discontinue the thrush medication.  She said one of the side effects is heart issues.  I am hoping that this was the cause of the SVT and she wont have to go through that again.  I am so grateful for my husband who thinks of things like this.  Something that none of the nurses or cardiologists thought to check.

Just as I was running out of things to write about Capri decided to go and change up the plans.  We will head back up there in the morning to see how she did and I pray to God that i don't get any more phone calls in the middle of the night.

business trips

All weekend Mike and I went back and forth about his upcoming business trip.  He could either go this week or next week.  It is to California, the same place he was at when i had my appendectomy.  I knew this day was coming when he would have to start traveling again but knowing about it doesn't make it any easier.  After talking with a few doctors we decided that it would be best for him to go this week because there is a slight possibility of her coming home in 2 weeks.  He flew out tonight and it already feels like he has been gone for a week.  He was home for 6 weeks, that never happens.  Normally he is gone every other week so this past month and a half has been so nice.  Back to normal life though.  Normal stressors plus a few extra.

Mike and I spent the morning playing with the kids at the house. We left for the hospital around 11 and spent a few hours with Capri.  Mike held her for most of the time, trying to savor that moment so he could hang on to it for the next 5 days.  I played with the kids in the music room.  They have a recording studio where the kids sang "We are young" by fun.  My poor little girl has my voice, cant carry a tune to save her life.  Ashton on the other hand is very musically inclined and helped her through the song.
 Primary children's has the most amazing places for siblings to go while there parents are with there brother or sister.  Sophie's place is there music room and has every kind of instrument you could think of.  Unfortunately it is rarely open because they don't have many volunteers who are musically inclined.  The kids spend most of there time at the Forever young zone.  It is a play room with everything a kid could ever want.  They have a game room with Wii, xbox and play stations.  An Ipad center where they can play on apps. A doctors room with pretend IVs, beds they can push each other around on, and every kind of dr equipment there is. A sensory room with a floor to ceiling lava lamp.  And the most amazing craft center any kid could ever want.  We have made pillows, piggy banks, silly putty, painted pictures and played play doh.  We have dyed rice to do sensory projects, painted with syringes and decorated baby dolls dressed in hospital gowns.  These volunteers are so great, taking time out of there day to come and help families that they don't know.  All of the crafts have been donated from people wanting to help out.

We met with an occupational therapist today to try and help Capri eat.  They spent around 30 minutes with her, watching how she sucked on a binky, the way she thrusted her tounge, squinted her face and turned away from the bottle.  They came up with a few ideas to de sensitize her mouth so she will take a bottle.  We also put her on a stronger medication for her thrush because it has been 7 days with no improvement.  She is up to 36ccs and doing okay.  She is still throwing up but not a lot.  The OT wants to change her feedings to be a continues feed all day all night.  Her hope is that if she always had food in her stomach she will get used to it and it won't cause her so much discomfort.  I just want her to get better.  We are ready for her to come home.  Tomorrow will be 6 weeks since all of this has happened.  I am half way through my maternity leave.  I want to be able to spend time with her at home before i have to go back to work.  I told Mike Capri and I were gonna figure out this eating problem before he got back on Friday so we have a busy week ahead of us.

phone call

Tonight we took A and B to there papas for a sleepover so we could spend the afternoon with Capri.  When we got there her pajamas had blood on them.  Scared, I asked if she was okay, the nurse told us that her belly button was bleeding a little bit earlier but it was nothing to worry about.  We held her, cuddled and fed her for several hours (6ccs out of a bottle)  She was moved up on her feedings to 32ccs through the feeding tube.  Around 730 we decided we were starving so we needed to leave.  I changed her diaper before we left and there was blood all around her belly button and on her leg.  We looked around and found an active bleed.  Not a lot of blood but enough to be concerned about.  The nurse practitioner agreed that her umbilical cord should have healed by now and she should not be bleeding.  They ordered some blood tests to see if it was clotting as we were leaving.

We went to dinner and to the store to pick up a few things then came home.  We've been laying here ever since watching Greys anatomy re-runs.  Mike looked at his phone to check the time and saw he had a missed call from the NICU.  I looked at mine, also a missed call.  My heart went into my throat and I couldn't breathe.  Mike put the voicemail on speaker phone.  It was the nurse practitioner calling to let us know that her labs came back and nothing looked suspicious.  I don't know if i can handle this stress much longer.  Every time my phone rings my heart skips a beat.   Every grey's episode I watch i picture my life in there and us being in that situation.  I need to start doing yoga again, find a way to relax and let things happen.

As we go forward from here my blogs get shorter and shorter.  As she keeps growing she gets healthier and my fears get a little bit less.  Slowly things ARE getting better.  We have to just keep pushing forward and hoping for the best.

How can i protect you?

Today Capri drank 15ccs from a bottle in one sitting!  I realize that that is not very much but its more than she has ever done.  the next feeding was 12ccs and the last was 10.  She is getting there. Slowly, but we are getting there. They kept her at 27ccs today but will hopefully start going up again tomorrow.  Mike and I got to give her a bath today.  I held her as Mike washed her hair then the nurse and I gave the rest of her body a sponge bath.  The poor thing was freezing, I felt so bad for her.  I cant wait until we can get all of the tubes and picc line out of her so she can have a real bath.

A came back to see her 15 minutes before visitors have to go home.  He usually wants to say hi, sing her a song and leave so that is more than enough time.  Today though he just wanted to hold and snuggle her.  He laid his head down on the chair next to hers and asked if he could just hold her and spend the night there tonight.  He said "this chair is kinda hard on my head but comfortable cause im with my sister.  He kept kissing her head and telling her how much he loved and missed her.  At 9 I told him we had to go because only parents are allowed late at night.  Tears fell from his face and he held Capri tighter.  He said he didn't want to leave her all alone and begged me to stay.  I let him hold her for another few minutes then put her in the crib and told him we had to go.  After i tucked her in i picked him up so he could see her and tell her goodnight, tears still falling and a quiet cry the nurse came over and asked him if he was okay.  He looked into her eyes and said "I just want my baby sister Capri to come home. I just really miss her"  I looked at the nurse and her eyes were wet.  I looked at the mom next to me who was listening and she was crying as well.  Everyone in that room feels the same way.  We just want our babies to come home.  It took him about 15 minutes to stop crying and be okay.  It was the worst kind of tears, the silent whimper.  You could see the pain in his eyes.  he is too young to have to deal with this kind of pain.  I want to protect him from all of this.  Thats what moms do, they protect there children.  I am failing and there is nothing i can do to make it better.  It breaks my heart.

A small set back

Capri is 3 weeks and 1 day old today.  Again, a day we never thought we would have with her, i am so grateful.  On Tuesday we had her feedings up to 38ccs through her feeding tube.  She has to get to 43 before they will talk about letting her come home.  She was almost there.  Wednesday she spit up several times so they left her 38ccs for the day.  Today she was still throwing up and now has loose stools so they took her feedings down to 27ccs.  I guess she is allowed to have a bad day since she has done so well the last 2 weeks.
I also met with the cardiologist today.  I haven't met with her in awhile so I was ready for an update.  Her echo today showed that her pulmonary valve is doing what is supposed to, letting blood flow through.  Her tricuspid valve is still leaking as much as it always has.  I was hoping the cardiologist would tell me that because her heart has shrunk a little amount that she would be considered a level 2 instead of a level 3.  Unfortunately thats not how it works, the levels are determined because of the valves, not the size of the heart.
As of now, her heart is functioning well enough that they don't think she will need a surgery until she is 2, and at that point she will be old enough for the cone procedure which is the closest to a permanent fix as we are gonna get.   Her oxygen isn't quite enough to be able to be off the cannula so she will go home with an oxygen tank and could be on it for a long time.  She also may go home with a Gtube, which is small tube inside her stomach.  You open the flap stick a tube in and feed her, then close it up and she is good to go.  We are hoping that she will figure out how to use a bottle and can gain weight on it so that we wont have to have a Gtube.  Genetics came and talked to me and everything on there side is clear.  She will not have any developmental delays, she wont have a disability, she will be a normal, just get tired easier than other children.  With every set back we have something positive happen.  I feel like I am on a roller coaster every time i talk to a dr.
Hopefully tommorrow will be a better day, she will keep her food down and we will be able to go up on feedings again.  Everyone keep your fingers crossed