Monday, December 30, 2013

Back in the hospital

On our way home from Worland Capri went into a long episode of SVT.  After 3 hours we finally decided to convert her with Ice and fixed her rhythm right away.  Nothing like smothering your child in a bathroom stall at a rest stop in the middle of nowhere.  Her diaper rash has continued to get worse.  Her poor bum is so sore she has skin breakdown all over it.  We tried antibiotics for a week and a medicated oral cream for a few days but nothing was helping so we decided to bring her into primary childrens once we got back to Salt lake.  I feel so silly bringing her in for a diaper rash.  i am trying not to be that mom who freaks out over every little thing but this rash has gotten so bad.
After the brought her into the ER and did a few tests they noticed she was struggling to breathe and had an extra heart beat in her waves.  They decided to admit her and try to figure out why she was not able to have normal poops.
We have chalked it up to when we increased her calorie intake it was too much for her body to handle and so instead of absorbing the calories she is just pooping them out.  After several discussions with pediatricians, cardiologists and the nutrionist we have decided that putting her back on a feeding tube is the best option for now.  That way we can pump her with a new formula to get her to gain weight before OHS in two months.  As much as i REALLY don't want to be back on a feeding tube i want my baby to grow so she can survive surgery.  We will do whatever it takes!

Breakfast with santa fundraiser!

This is the day we have been planning months for.  I am so excited!  My dad bought us a hotel room at little A the night before so we wouldn't need to try and bring everything in so early in the morning.  We took the kids swimming and played in the room.  It feels like we are on vacation.  Like everything is okay and we are just tougher celebrating the holidays.  I love days like this.   The fundraiser was amazing.  We had 20 students From Alta High school volunteer there time to help serve food, clean up and do anything that was needed.  We had the most amazing Santa and mrs claus who took pictures and played with the kids the entire day.  A and B were in seventh heaven.  We got to meet 2 other ebstein babies and a few other heart kiddos (and there parents).  It was so nice to sit and visit with other moms and hear there stories.  I didn't feel so alone.  Capris pediatrician came to do his christmas shopping at our silent auction :)  As i was visiting with him i mentioned Capri had a small diaper rash  that we couldn't seem to get rid of.  He took us into a conference room, did an assessment and called in an antibiotic for her.  That is why we have the best doctor ever!
half way through the event KSL news came in to do a segment on Capri.  They hooked me up to the microphone and interviewed me for close to 20 minutes.  Out of the corner of my eye I saw my old instructor Jami come in with her hands filled with gifts.  I was trying to concentrate on the news lady but she was standing right by us.  Then she came and stood next to me and told me she had some presents for us.  My first thought was, "jami im in the middle of an interview, did you not see the cameras???" Then she proceeded to tell me that Taylor Andrews Acadamy of Hair was who had contacted KSL in the first place and that we were the schools sub for santa this year.   I was speechless.  this christmas was a very small christmas.  mike and I didn't buy each other gifts, and the kids presents came from places like hobby lobby where i could get them for 40% off.   Our kids are little and have always been spoiled before so they don't need anything.  We were fine with them having a small christmas and new that they would be fine too.  But to see all of those gifts and know that they got to have that great "christmas morning' with lots of toys meant so much.  As much as we have tried to not do this i  know A and B have been put on the back burner this year.  Capri needs so much, there just isn't enough of me to go around. To be able to give them that fun christmas with lots of presents, as superficial as it sounds, is great!

I have so many amazing friends who have supported us through the last 6 months.  When things like this happen you find our who your real friends are.  I have been amazed at the people who have came through the woodwork to support us and help us on this journey.  And the people who i thought were close friends fade away or even worse tell us that we were bad people for asking for help.  I am so grateful for those positive people in our lives and have come to the realization that i don't want people around who are negative, un happy people.  I am barely hanging on right now so i need people in my life that will be a positive influence.

Dec 20th surgery phone call

Dec 20th- day before surgery.  I sent the girls to there papas today and kept A to help me run errands to finish getting the last minute stuff done before the fundraiser.  Its been a long time since A and I have gotten to hang out just the 2 of us.  We stopped at Kneeders to pick up the french toast for tomorrow and got a gingerbread man for a treat.  He was so excited to get to pick whatever he wanted and not have to share with his sister.  I love when we get to have 1 on 1 time.  Next we went to Harmons to go and pick up 40 pounds of sausage.  As i pulled into the parking lot I got a phone call from 801-662-..... Why would primary's be calling me?  I answered and heard Dr. Cowley on the other line.  He didn't waste anytime and let me know that he had talked to Dr. Dearani at the mayo clinic and he wanted to get Capri in as soon as possible.  He classified her as "failure to thrive" and said she needs the surgery now.  He gave me a phone number and told me to call the Mayo clinic to set up a date in February.
As I hung up the phone, I was heart broken.  I knew she needed the surgery but I wanted so badly to celebrate her 1st birthday first.  She will only be 8 months old.  That is SO small.  What if her heart isn't strong enough to survive the surgery?  How am I going to do this? Im not ready yet.

I called the Mayo and scheduled for February 25th.  We wanted to make sure the surgery wasn't close to A's birthday.  If all goes as planned and she heals quickly we will be out there for 2 1/2 weeks.

I spent the rest of the day breaking down, crying every time I thought about the surgery and calling friends and family to let them know it was scheduled.  As we were in a grocery store the cashier asked why we needed so many eggs. told her about capri and A said "mom, are you going to start crying again, really?? haha little stinker!

He's right though, why am I crying?  I knew this surgery was coming.  We knew from the beginning it was going to be risky.  So she is going to be smaller than we had hoped.  Nothing we can do now except try to get her to grow.  Hope for another miracle and soak up every second we have with her.

Sunday, December 8, 2013

Cardiac ICU

Wednesday morning:
Baylee spent most of the night awake with an aweful cough.  Wednesday morning I decided to take her into an Insta care to make sure that she didn't have RSV.  As we walked into the doctors office A and B ran over to the kids area to play while Capri and I waited to sign us in.  I heard her cough and looked down just in time to see projectile vomit flying out of her carseat.  I sat her down to see if she was ok and she was blue.  I cleaned out her mouth and turned up her oxygen to see if that would help.  Her skin was grey and her lips were a deep blue.  Our pediatricians nurse walked by and asked if she was okay.  She peeked at Capri, said "oh my god" and ran back to get the dr. At the same time 2 nurses came running out from the insta care side and hooked her up to monitors.  After casuing quite the scene we were told to get to primarys as quickly as possible

The ride there A was my little doctor.  Every few seconds he would update me on her color letting me know she was still blue.  He would tell me her eyes were opening a little but she was mostly just laying there.  We got to the ER and were greeted by a room full of doctors.  after assessing her they confirmed she was in SVT and that we needed to start doing vagal maneuvers.  We started by holding her upside down, nothing.  Then we gagged her with a binky and tried to stimulate her rectally.  Still nothing.  Now it was time to use the ice.  I told them I didn't want to watch so I stepped out of the room while they placed an ice bag on her face to suffocate her.  It is the worst thing in the entire world.  I hate that we have to do that.   And it still didn't work.  Nothing was getting her out of SVT. 
They brought in some medicine to stop her heart and re set it.  first dose, nothing.  second dose, nothing. they placed the shock pads on her and brought in a doctor to sedate her.  They decided to try the ice one more time just incase and it worked.  After 4 and 1/2 hours she was finally out of SVT. 

An hour later she was back in it.  We haven't had these issues in over a month.  what is going on? why is she struggling?? The ice kicked her back out of it but sent us down to the Cardiac ICU.  She had 2 more episodes through out the night and was sent up to the childrens surgical unit Thursday afternoon.  She did great and by Friday afternoon we had our new meds in the pharmacy and were getting ready to be discharged.  Then she went back into it.  Nothing worked.  They iced her 8 times! It was horrible.  Everytime her poor tiny arms and legs would fly into the air squirming to get away. they stopped her heart twice with medications but nothing worked.  We rushed her down to CICU placed the shock pads on her chest and had a room full of doctors.  They doubled the adenosine dosage and tried the meds one more time.  It kicked her out of it and she was okay.  Her heart slowed down and her oxygen went back up. 

It is now Sunday afternoon and we just moved back to the CSU.  They changed her meds again and we have hopefully found one that will work.  Being at the hospital is exhausting mentally and physically.  It is so hard to be away from our other children and to be so helpless for capri.  That being said I am SOO greatful for this hospital.  There are so many amazing people who volunteer there time here to make meals for parents so we don't have to pay for food.  People who are singing carols in the lobby, and people who just come by to visit.  I am so glad that we live so close to a hospital that can help our baby girl. 

Saturday, November 9, 2013

starting to feel normal

Everyday things seem to feel a little bit more normal.  We are starting to get into a routine.  Capri is slowly weening off her oxygen and things are starting to be okay.  4 months ago my life changed and I didn't think I was going to make it.  Today things are okay.  I have a beautiful little girl who is slowly growing, getting stronger everyday.  We have been overwhelmed by the support of our friends and family who have been willing to help us out as I plan this fundraiser and start to prepare for Capris open heart surgery.

I still struggle with falling asleep.  Night time is when all of the bad thoughts and fears surface.  What if she stops breathing and I don't hear her? What if she goes into SVT and her monitors mis read?  The thought that we may only have our baby girl for a small amount of time is always there.  I was taking a bubble bath with her last night, thinking about how much I love taking baths with my babies.  Her head on my chest, eyes closing relaxing in the warm water.  I asked Mike to take a picture so that I would have that memory forever.
We took Capri to a Jazz game a few weeks ago and I got mixed reviews from my family about taking her to a place like that that was filled with germs.  As Mike and I talked about it though, we want to have memories with Capri.  No matter what our future holds we want to be able to look back on these months and think of the fun things we did as a family.  I hope that on her 18th birthday we can give her the family picture we took and joke about how we were so poor the only seats we could afford were so high that she needed to have her oxygen on.

Everyday I love this little girl more and more.  Her personality is starting to shine through, she is always smiling and touching the hearts of every person she meets.  Look at how far she has come in the last 4 months.  5% odds have
 nothing on her ;)



Saturday, November 2, 2013

Fundraiser

As we are approaching Capris open heart surgery we have decided to reach out to friends and family to ask for help in a fundraiser.  On December 21st 2013 we will be doing a breakfast with santa fundraiser and silent auction in the founders room on the top of the zions bank in downtown Salt lake city.  I am writing this blog in the hopes that there are people out there with amazing talents or connections to businesses that would be willing to donate items to our silent auction.  We are looking at $20,000 in bills once we have her surgery so anything would help!  If you know of someone or have something you would like to donate please email me at kendraware@live.com.  Any and all donations would be very much appreciated!!

Monday, October 28, 2013

med error

Today was Dr day.  A and B were spending the day with their papa while Capri and I went to our appointments.  Right before we left I gave Capri her meds.  I put all the bottles together and give her them one a time, putting them into another pile so i know which ones i have already given.  Viagra 1.7mls, check.  Lasix .4mls, check. urisodol .52mls check. Urisodol.. .52mls.... wait, I just gave that one.  I looked in the already given pile and instead of urisodol it was her flecainide (heart med).  She gets .15mls of that.  I just gave Capri almost 4 times that amount of medication she is supposed to get.  I called her cardiologist right away and left a message with the nurse to see if i needed to take her in or what i needed to do.  We got in the car and headed to my appointment.

For the last week i have had a severe pain in my arm which i am assuming is from a pinched nerve.  It has progressively gotten worse to the point that part of my arm is numb now.  I got to the orthopedist  checked in and filled out my paper work.  As I was sitting in the waiting room waiting for my turn, the cardiologist nurse called.  She frantically told me to get to the ER right away and that they would be admitting Capri overnight.  I told the front desk i had to cancel and ran to the car.  I cant believe i did this.  I always double check the meds and the doses.. what was i thinking?  I raced to Primary childrens while calling Mike and my family to let them know what was going on.  Dr Adam Ware called me on the way and asked how close i was and again urged me to hurry.   He told me to just go to the ER because they needed to look at her right away.  As I walked in the front doors the nurse asked if this was Capri and rushed us back to the rooms.  Before I could even sit her down We had at least 15 doctors flood into our room hook her up to monitors and start sticking her for blood and IVs.  I stepped back and started to cry.  I did this to her.  All of this pain she is in is because of me.  I know people make mistakes and i shouldnt "beat myself up" over this but it was my fault.  It could have been avoided.  I talked to Adam and to the pharmacist who had done studies on flecainide when it was still an investigational drug.  They re assured me that it was just a mistake and it happens all of the time. They are worried that she will go into ventricular tachacardia.  Apparently kids have a much harder time with this then with super ventricular tachacardia.  This one they have a much harder time re setting her heart.

Her EKG came back looking "ok".  they told me we were past the point of life or death and now she just needed to be monitored.  We didnt need to go to the Cardiac ICU  but wernt stable enough to go to the infant unit so we were moved to the Cardiac surgical unit. Here they have specialized machines and nurses that are able to deal with capris conditionn.

What started out as a fun relaxed day with just me and my baby girl has turned into stressful possibly life threatening day.  And i have no one to blame except myself.  I am who put us here today.  One things for sure. I will never mess up her flecainide medicine again 

Thursday, October 24, 2013

life choices

Today I did one of the hardest things I have had to do in a long time.  I sent an email to my boss letting her know I have to step down for now.  I LOVE my job.  I teach employees about how to take care of adults with disabilities, how to de escalate situations to avoid confrontations and how to restrain them when you have to.  This is the first job I have ever had that I honestly love every part of it.
That being said, since I have gone back I have done nothing but worry that something will happen to Capri while I am gone.  Mike told me to stick it out and try to see if things got easier.  We need the money and I need the break.
Today As I walked in the front door I saw my mom holding Capri in a panic.  She told me that her color didn't look good and her heart rate was fast.  I brought her into the living room to hook her up to her monitors and listen to her heart beat.  In my head Im telling myself to stay calm, don't make anyone nervous, its okay.  Her heart rate was 190.  The only time i have ever seen it that high was in the NICU and shortly after they had to shock her to get her out of SVT.  I tried to gag her and that didn't work.  I brought her upstairs to put her in a cool bath. Before I did I remembered Dr. Cowley telling us to hold her upside down and let all the blood rush to her head.  When I am doing these maneuvers I feel like I am being an abusive mom.  Who holds an infant upside down by her toes??? I laid her on the bed and went to listen to her heart beat again.  She started throwing up all over her me and my bed.  I turned her to her side but she couldn't clear her throat.  Her eyes got big and she was trying to breathe.  I grabbed the nose syringe and started sucking throw up out of the back of her throat. Finally she gasped and slowly started to breath again.  Grabbing my stethoscope i listened to her heartbeat one more time..89, she's out of it.. she's ok.
If I hadn't been home my mom would have called 911, they possibly would have shocked her heart and who knows what could have happened.  This helped me to decide that where I need to be is home right now.  We will figure out how to pay for bills, I will find a time to get a break and have some adult time.  We will make it work.  Right now, I need to be with my children.  In the grand scheme of things they are what mattters.

Monday, October 14, 2013

you have to get worse before you can get better

The older Capri gets the more problems we seem to be having. Since our ER visit she hasn't been able to keep her oxygen up on her own.  Last night as we were getting ready for bed I put on her pulse ox monitor and she was at 79.  We quickly put her oxygen on and turned it up to 1/4 liter. After 30 minutes she was still in the 80s and her heart rate was in the 90s.  We turned it up again and I called the cardiologist.  I know what to do when her heart rate is too high, I haven't had to deal with it being to low though.. this is new to me.  After talking to the doctor (at 11pm) he told me to keep a close eye on her over the next couple of hours and if she got any lower to bring her back to the ER. Sleep is over rated, right?  Or at least that's what people keep telling me.  Finally around 2 I couldn't stay awake anymore so I put her in the crib and turned the monitor on as loud as it would go.  I woke up every 30 minutes or so to make sure she wasn't grey and that her heart rate was okay.  Around 730 her alarms started going off saying her heart rate was too high.  This is where I am more comfortable.  I let her breast feed and it kicked her down from 160 to 130. 

All day today she has struggled with her oxygen.  Barely getting into the ninety's being on 3/4 of a liter.  I have never had to use that much oxygen with her before.  She normally does great on 1/8.  Her lips have been blue most of the day but the rest of her seems fine.  My normal happy smiley baby.  After talking with both her cardiologist and her pediatrician I was told to keep an eye on her but that we can only do so much.  As her heart worsens it is going to get harder to breath and this is just going to be part of our lives until we can make it to the surgery.  Next spring can not come soon enough.  We have to get her that surgery before it gets to bad and our only option is a heart transplant. 

Wednesday, October 9, 2013

1st ambulance trip

A was so worried about Capri going in the ambulance.  On the car ride after  as tears fell from his face he told me he saw a man on the bed with his eyes close and the emts put him in an ambulance and he was dead.  So that meant that capri was going to die since she had to go in the ambulance.  He loves his little sister so much i couldn't ask for a better son. 

watching my baby get into an ambulance and drive away without me was one of the hardest things i have done so far.  I just want to always be there to protect her, to make her feel safe.


I was so drained emotionally and physically last night that i didn't write.  It was one of our more adventurous days.  On my way to pick up A and B from preschool Capris cardiologist called addressing some concerns I had about her.  He agreed they were worry some and told me to head into the ER and have her checked out.  All 3 kids an I headed over to riverton IHC to get carpi checked out while my best friend sat with me once again in a hospital emergency room.  After doing X-rays the doctor let me know that she had fluid on her lungs and in her pulmonary valve.  "It does look like she might be in heart failure, I think we need to take her via ambulance to primary's to do further tests".  I had the other kids with me and Chelsy had left to go to work so I wasn't able to ride in the ambulance with her.  Her first ride with EMTS and she had to do it alone.  I rushed A and B to their papas and drove way to fast to primary childrens.  When I got there I could hear Capri crying from down the hall. Her little tiny scream broke my heart, she must be so scared.  I got to the room and held her until she stopped crying.  The doctors came in one after another, EKG, Blood work, echo.  Watching her oxygen monitor dip into the low 80s.  Im so scared she cant be in heart failure.. We are doing surgery in a few months and then she will be all better.  Her heart has to make it until next spring.  She is too little to do surgery right now.  After what seemed like days the cardiologist came back to the room letting us know that her echo came back "ok".  It wasn't good but it wasn't bad.  We need to keep a close eye on her and increase her diarrhetic.  Her body retains fluid so the lassie helps push out any unnecessary fluid.  We doubled her up on that and will watch and see how she does.

This morning Dr. Cowley called me again to let me know the results of her holter monitor were in.  We hooked her up to an EKG for 24 hours to monitor her heart spikes.  The results showed that she is having small episodes of SVT all day long.  We will increase another one of her meds and again.. watch and see.

On top of everything, today my grandmother came to down to get some tests done at Huntsman cancer center.  After a day full of poking and prodding they diagnosed her with ovarian cancer.  She will need to do a stress test on her heart tomorrow to make sure she is strong enough to handle surgery and if all goes well she will go in for a full hysterectomy Tuesday morning.  If you have ever met my grandmother you know that she is the spunkiest tell you how it is no fluff kind of person.  There is never a dull moment when Buba is around.  Whether its sitting at a restaurant watching her threaten to dump a glass of water down your shirt because you are on your phone, to really starting a food fight in the middle of that restaurant because her brother was being a turd.  I love every moment i get to spend with her and i can not imagine my life with out her.  I know i have asked all of you for so much over the last few months and I would be lying if i said this was the last time I was going to need help but if you have a free second to send a good vibe, think a good thought or say a little prayer to keep my grandma safe and to have this be a type of cancer she can beat I would be so grateful.  I need my grandma around for a long time.  She needs to be here to watch my kids get married and tell there significant others embarrassing stories.  She is too good of a person to leave this earth right now.  I need her for my sanity so please.. if you have a few good vibes just laying around please send them our way.

Sunday, October 6, 2013

We always find a way

This is the difference between a healthy kid and a heart kid.  Look at C's lips compared to A and Bs.  She is so much more grey than they are. These 3 are my whole world.

Our beautiful miracle baby, growing up big and strong
Its been one week since Capri has been tube free.  I cant explain how wonderful it has been to hold her and not worry about tripping over wires, or having to wake up in the middle of the night to change feeding bags.  If it wern't for the oxygen tabs on her temples no one would know that she had something wrong with her.  We did a weight check on Friday, she was albs 1.6oz.  she has lost 0.4oz since we took the tube out.  We have to go to the doctor once a week for the next month to check her weight.  If she continues to lose we will have to re put her tube back in.

I went back to work this week.  Never in my life have I been so scared to leave home.  We have a wonderful neighbor who is tending the kids for the 3 hours Mike and I are both at work and I am fully confident in her ability to take care of Capri.  That being said, I am so afraid something will happen while i am gone and I will be to far away to be able to hold her and tell her goodbye.  I hate that my head always goes to the worst case scenario.  Every thought i have is worrying about my baby girl.  Every picture I take of her I wonder what if this is the last picture I take?  My first day back I threw up twice and had to pull over on my drive in because I was having a panic attack.  My class was small and  they were both excited about work so it made it easier to teach.  I saw old friends and it started to feel more familiar.  The next day was much easier.  I still checked my phone about 100 times to make sure everyone was okay but I remembered how much I love my job.  I talked to coworkers about Capri without breaking down.  I am so fortunate to have a job where I only have to work 2 days a week.

I have spent most of the week looking into how much it is going to cost us to take Capri to the Mayo clinic.  10 to 20,000 dollars for the 2 and a half weeks we will be there depending on how much insurance covers.  I've gone over our budget again and again, seeing where we can cut a little here and a little there. Every extra penny goes into savings so we will be ready by next spring.  Do you know what kind of wedding I could throw her for 20,000 dollars?  Or the vacation I could take her on?  Peace fills me knowing that if she can make  it through this surgery though she is going to be okay.  Her heart will be "fixed".  We can go on vacations another year.  I can start a savings account post surgery for her wedding.  Everything is going to be okay.  We always find a way to make it work, this isn't any different.


Friday, September 27, 2013

surgery

Today is 3 months since we found out about Capris heart.  It feels like it has been 3 years.  Last night her oxygen dipped into the 60s and she was very grey.  We took her to the cardiologist today to see what was going on.  They did an X-ray, hooked her up to an ekg that she has to wear for 24 hours and are just going to monitor her.  Today was a big day.  We got to take the feeding tube out!  Looking at her now she seems like a normal baby.  All day i have been looking around for her cords to hold so i wont trip.  It is so great to see her beautiful face tube free.
After looking at her X-rays, Dr. Cowley is pretty sure she will need to have her cone procedure done sometime within the next 6 months.  This scares me to death.  One one hand its wonderful because after this surgery her heart will function normally.. well normal for a heart baby.  On the other hand doing this surgery before 2 years old is not ideal.  There is a very high mortality rate in infants having these kind of surgeries.  I can not imagine my life without her.  She has beat so many odds Im scared our luck is going to run out.  Everyday I get more tired.  I wish i had a pause button that i could push so i could get a few hours of sleep.  Just a couple to re charge... then my brain could function  normally again

Tuesday, September 24, 2013

er trips, work and stepford wives

Every night I have great plans to write in the blog.  Then one thing leads to the next and its after midnight and im exhausted.  We were so spoiled with A and B. They slept through the night almost right after birth.  If they did wake up it was once maybe twice.  Capri wakes up every 30 minutes or so.     Not enough that she is screaming or really upset just enough to wine that she lost her binky which will set off her alarms.  Nights have become never ending.  During the day however she is a perfect angel.  Hardly ever  cries, loves to snuggle and very interested in brother and sister.  I am hoping with all hope that on Friday her cardiologist is going to let us take her NJ tube to a NG and if she does well with that get rid of the tubes all together.  We had to make an ER trip yesterday to replace the tube.  I really am beginning to loathe that drive.  i cant even blame her though, this time it was my fault.  A and B went to there papas because I wasn't feeling well.  We had no groceries however and shopping with one child is much easier than 3.  As I was setting her car seat inside the cart the lid of her med port got snagged on the shopping cart and ripped her tape right off.  I don't make it a habit to carry tegrederm around with me so i asked the clerk if they had a piece of tape i could use.  Im sure she thought i was crazy taping my daughters face.  On the way home as i was turning off the interstate i heard a blood curdling scream.. yup she just pulled it out.  I pulled over to confirm what i suspected and sure enough.. a tubeless baby.  back to eagle mountain to unload groceries just to turn back to salt lake for an Er trip.  The only upside of the trip  was I got to watch part of the broncos game while sitting in the waiting room.
This is my last week home before I go back to work.  I LOVE my job.  I teach restraints to employees who take care of adults with disabilities.  It is the funnest job I have ever had and I love watching my new employees get excited about their new career.  That being said I am scared to death to go back.  The fear of something happening to Capri while I am away terrifies me.  I know that if she is going to pass away it will happen whether I am here or not but leaving her makes it that much scarier.  These last 12 weeks did not go as planned.  I imagined my maternity leave being me cooking fancy dinners overnight and all sitting at the table talking about our day.  Working on preschool stuff with the kids and taking daily trips to the park.  Working in my yard finishing the last few little things we need to do to have it be complete.  Instead I spent 2 months eating out of a hospital cafeteria, neglecting my house and lawn and the only preschool prep that was done was in the hospitals play area doing crafts.  This wasn't what I imagined but its what we were given so I will make the best out of this week and just be a stepford wife for 6 days instead of 6 weeks.

Wednesday, September 18, 2013

3 kids

All of Capris liver results have come back  Her billiruben is back down to normal levels which is great! One of the other tests came back normal and 2 came back elevated.  we will go back at the end of October to do another blood draw and test her levels again.  If the 2 are still elevated we will test for PFIC.  I am trying not to look to much into this until I know if she has it or not.  The little that I did see was that if it is bad enough she will need a liver transplant.   It also could just be treated with medications.  Im hoping that everything will continue to go down and by october we wont need to worry.
Having 3 kids is defiantly a lot different than 2.  I feel like I am constantly running yet I am not accomplishing anything.  I am so grateful for the kids preschool because it helps remind me to sit and spend one on one time with them every night while we work on homework.   All night A asked his dad to go on activities with him.  "Maybe just you and me could go to cabbalas, cause thats man stuff" " or maybe we should go fishing so we can catch some catfish again".  "How about you and me go work on the boat and the girls can clean the house".  He loves his daddy so much.  We said we were going to  make it a point to do one Daddy-daughter mom-son date (and visa-versa) a month with A and B.  Saying is a lot easier than doing.  I feel like we are so busy that finding time for anything one on one is hard.
On a brighter note I got Capris stroller in the mail.  I am so excited about it.  Its made of all metal so it is sturdy enough to hold her oxygen, pulse ox and feeding bag.  Plus the seat swivels so i can have her facing me to make sure she is breathing okay.  We have always been on a budget so with our other children things like strollers or baby monitors were what is the cheapest i can find that will get the job done.  Being able to research and find one that is perfect for Capri was kind of nice.  Before we knew about Capris heart my plan was to take kids to preschool then take C with me to the gym and drop her off at the daycare while I worked out for the 2 hours.  With her being so medically fragile and not having anyone comfortable watching her the two of us are going to start running.  I have never liked to run.  After a block I have convinced myself that I am having a heart attack and my lungs are collapsing.  then I walk back to the house and try again in a few months.  Hopefully our new stroller will give me motivation to keep with it while the older kids are in school.

Monday, September 16, 2013

Liver disease

The last week has been a whirlwind of activities and by the time i sit down at night i have been to exhausted to write so i apologize for taking so long for an update.
Mike and I spent Thursday through Sunday in Laguna Beach, CA  celebrating two of our best friends getting married.  It was a beautiful amazing weekend and it was so nice to be able to get away for a few days to be with Mike.  While we were gone my wonderful Mother and Father came to Salt lake to stay with our children and make sure they were okay.  Saturday as we were driving to the wedding ceremony my mother called me to let me know they were at primary childrens emergency room.  Capris tube had come all the way out of her nose and they needed to replace it.  Unfortunatly it was the weekend and with no radiologist on call their was a chance she would need to stay over night at the hospital.  After waiting nervously for a doctor to call me back, hoping that I wouldn't get the phone call in the middle of taking bridal pictures the doctor finally called and told me a radiologist was on his way and she would be able to go home soon.  While they were at primary's my other two children were playing with the neighbors on there trampoline back at home.  Our neighbors daughter who is the same age as B fell off the tramp and hurt her arm (she may have broken it but I have not seen them to find out for sure).  That could have been B.  We could have had 2 of our 3 children in an emergency room while we were out of town. I want to put all 3 of them in a bubble and keep them away from all things dangerous.
We got back from our trip at 1230 monday morning.  Fell asleep soon after, woke up at 2 to change out C's feeding bag, slept till 6, time for meeds then up again at 8 to get everyone ready to drive to the hospital.  Back to no sleep, our vacation is over.  C had an appointment with a gastroenterologist to check for liver disease.  After rushing kids out the door and getting breakfast snacks for the car we headed out.  My car  was out of gas, get to the gas station, fill up her alarms start going off.  Fix feeding tube and start driving.  Alarms go off again.  Pull over fix them, start driving.  Ten minutes later alarms go off.  Good lord Im never gonna make it.  Finally her machine starts working and we make it to her appointment.  There are 3 different liver diseases the doctors are concerned with.  2 are controlled with medication 1 is more serious.  All 3 have names that are longer than this blog.  The main concern is her conjugated bilirubin.  They want it to be between 0-0.3.  The day we left the NICU hers was at 1.6.  It was 2.4 when she was born.  They wanted to draw labs in the hopes that her levels have continued to go down.  Mike left and I took her to the labs.  First lab nurse.. pokes twice, gets nothing.  He calls in "the big dog" (his words not mine) He tries in two different places.  First one.. nothing.  Second one blood slowly trickles out. Thick. dark blood.  after a few minutes we finally got 1 cc.  Then it clotted off and he had to take the needle out.  He called the IV team to have specialists come down.  It was going to be at least an hour so I went to get my other kids from the play area to get some lunch.  Then we walked across the walkway to check on my little brother who was having surgery on his VNS to help control his seizures.  (my family is keeping hospitals in business this year).
Back to the Lab clinic to see the specialists.  They prick her foot, nothing.  Arm, nothing.  Hand, nothing.  Then one nurse started looking at her scull to find a vein their.  My stomach dropped.  That is the worst place to draw blood please don't put her through that.  They decided to try her other hand to see if they could find a vein.  Finally blood started trickling out.  We had to sit her up and let her cry so the blood would continue to flow.  After 15 painful minutes they finally had 4ccs of blood.  I don't know why her blood was so thick but we will be taking her to the pediatrician on Friday and will hopefully have some answers.  I cant even think about liver disease and having another organ fail.  Its to much for me to take in right now so until someone tells me 100% yes or no I'm pretending like nothing is wrong.  That her liver is like every other babies liver.

Back to the the U to check on my brother.  He is out of surgery and doing fine.  He understands more than any of us what Capri is going through.  He has been there.  He is there, taking excessive amounts of medications everyday, having a body not act the way you want it to.  He will always have a special bond with Capri that none of us will be able to understand.

Its now midnight again with 2 hours before i need to get up to change feeding bags. I am so grateful I was able to have those few days in california.  To be able to sleep through an entire night, knowing that sleep is going to be hard to come by for the next year, not only with the feedings but with the fear of her passing away while we sleep.  So tonight as I lay next to her, im counting my blessings that she is still with us and doing so well.  And i hope that I will continue to be grateful and have these blessings be apart of our family.

Sunday, September 8, 2013

alone with 3 kids

Mike left for Dallas today.  This will be the first time I am alone with all 3 kids.  Being alone with 3 kids in itself is daunting, having one of them be medically fragile is a whole different story.  I have an amazing 4 year old helper though and Im sure we are going to be just fine.  I am a little nervous for the nights just because Mike and I usually split up the times so we both are able to get a little bit of sleep.  Heart moms have told me time and time again though that sleep is over rated and you can get by on very little.  I am going to test that theory this week!
 I have been following another heart moms Facebook page who had a little girl the day after Capri was born.  I've watched them on the same roller coaster that we have been on.  Defeating odds, doctors in disbelief that their daughter was doing so well.  They brought her home a week before we brought Capri home.  In the last week things started to get worse and they knew they were losing their baby girl.  There was nothing else the doctors could do so they kept her at home and prayed that she would defeat the odds again.  Yesterday she passed away in her mothers arms.  My heart breaks for this family.  I lay here holding my almost 2 month old, with the knowledge that this very much could our family.  Everything is fine one moment and the next we are losing her.  Because of that, the way I interact with my family is much different.  When my phone rings, I let it go to voicemail, I can call them back.  The tv is not on near as much as it used to be.  We spend time together.  sucking in every moment not knowing when it will be our last.  We stay home and play.  The store can wait, the yard work will get done eventually.  As long as we have each other nothing else really matters.

Friday, September 6, 2013

doctor appointments across the valley

Today was a day full of Doctor appointments.  We started out our day back at primary childrens.  We were meeting with our main cardiologist, Dr. Cowley.  He came recommended to us by several nurses and other moms with heart babies.  When we got their he asked us for our med list.  I have made a binder that is filled with all of Capris information.  From her diagnosis to her meds to billing information.  Her own little PCSP.  As he looked at all of her meds and at all of the times she was taking them he told us that that was ridiculous.  It is fine to have meds like that while you are in the hospital and you have nurses being paid to just watch over your baby.  In the real world however, people just cant be expected to live like that.  He went through the meds talked to her other doctors, took her off the iron which has been making her sick and came up with a new schedule.  Now, instead of taking meds at 12am, 4am, 6am, 8am 12p, 4pm, 6pm and 10pm she takes them at 10pm, 6am and 2pm.  That in itself made my life so much less stressful. 
Then he looked at her stats.  She was sitting at 98 being on 1/4 of a liter of oxygen.  He said she didn't need the oxygen, it wasn't helping her any because she was already doing it all on her own.  She now only needs to be on the oxygen while she sleeps.  That also means she only needs the pulse ox while she sleeps, so during the day we only have one machine to carry around with her.  We also talked about her future and surgeries that needed to be done.  He told us how he is good friends with Dr. Dererani from the mayo clinic in Minnesota and how he would like us to fly out there to have the cone procedure done within the next year or two.  That was one of the main reasons why we picked him as our doctor.  He was willing to send people to the best doctors in the world, not just settle for one that lives close by. 
After her appointment we rushed to West Jordan for A and B's well child check appointments.  B just turned 3 so hers was a regular check up plus she had a wart on her toe that needed to be removed.  I wanted the dr to check A because he has always had bad night sweats and has stayed at 34 pounds for almost 2 years now.  With all of Cs heart issues I wanted to rule that out. " Both A and B have perfectly sounding hearts.  Nothing is wrong.  I do want to check Ashton for diabetes however because it presents the same issues with weight gain and night sweats".  Last night I had talked to B about going to the dr and prepared her for getting a shot for her vaccines and that we would freeze the wart so it would hurt a little.   When it was time to freeze it though Dr. Boud told her we could just do a topical medicine that would kill it and is painless. As A was holding her hand he kept telling her how bad it was gonna hurt and that she was gonna cry.  I think he was a little disappointed when she was fine.  She also didn't have any vaccinations that were due so she got out pretty easy.  Ashton on the other hand, who I told wasn't going to get a shot, that we were just going to listen to his heart had to get a finger prick. He was not happy that I lied to him.  As the nurse cleaned his finger and pricked it he was fine he didn't even jump.  Then he saw the blood and the tears started to fall..  Apparently the sight of blood is worse than the actual pain.  His blood levels came back normal and everything was fine.   3 doctor appointments 3 good outcomes.  This is wonderful! Now baby C needs to just keep eating and getting stronger.  Hopefully in the next month we can pull her nj tube back into her stomach and in the next 2 months take it completely out.  We just have to keep asking for those miracles.

Tuesday, September 3, 2013

dr visits and home visits

Tonight we were visiting with Mikes cousin and wife who had brought our family dinner.  The kids wanted to go play outside so Brooke Capri and I went outside to watch them.  As I walked outside several cars pulled up in front of my house and around 20 people came piling out.  It caught me off guard and I didn't know what to say.  Then I remembered that the LDS church was coming by tonight to give us the proceeds that they had raised with their cupcake fundraiser for Capri.  They made a beautiful carseat cover a pair of adorable jammies and a card.  The person in charge told me the girls wanted me to open the card while they were there.  I asked Brooke to hold Capri while I opened the card.  As I opened the card i about fell over.  These beautiful young women went door to door and made i think close to 500 cupcakes.  They raised way more money than I ever imagined.  The night before I was sitting in the office trying to figure out how I was going to pay off the debt we accrued over the last 2 months from driving to the hospital every day and having to eat out almost everyday.  These girls have no idea how much stress they just lifted off of us.  I didn't know what to say.  Its not often that I am speechless but all I could say was thank you.  I don't know the words to explain how grateful I am. I hugged each girl  (which Im pretty sure made them all very uncomfortable :) ) and told them all how much we appreciated this.  It still amazes me what a great community I live in.  I don't know any of these girls.  I don't know their parents, I don't know anything about them.  But they cared enough about our daughter to help our family out.  This amazes me.


Capri had her first pediatrician visit today.  She has been breastfeeding about 3 times a day since she has been home on top of her continuous feeds through her nj tube.  I was hoping that we would go from 6 lbs 10oz (what she was on Friday) to 6.15.  Her goal is to gain 1/2 oz a day.  As the nurse weighed her I looked at the scale and it said 7 lbs 9oz.  I told her that wasn't right and asked her to re weigh her.  7 lbs 9oz.. She gained 9 ounces in the almost 2 months in the hospital and gained 15 ounces in the 5 days she has been home.  I am taking her back on thursday to do another weight check and hope that this wasn't a fluke.  If it is correct though that means she is growing.  That means that her being home is working.  It also could mean that this is why she went into svt.  If she gained almost a pound since she has been home her heart meds need to be increased.  She may not be getting enough medicine.  We will see her cardiologist on Friday and will hopefully up her meds and continue to grow and do well.  After a long scary night, we've had a wonderful, promising day.  Again.. taking things one day at a time

I knew it couldn't be this easy

2:45am- Capris alarms start going off.  By now though this doesn't faze me because every time she wiggles her foot the wrong way her alarms go off because they are not getting a good read.  I silenced the monitor and laid back down.  She was awake and restless.  As I lay there, listening to her breath it sounded like she was struggling.  A muffled inhale then a long pause then exhale.  I picked her up and checked her cannula, everything was fine.  Her alarm started going off again so this time I looked at her numbers.  Oxygen  91 Heart rate 159.  Now in a normal baby a heart rate of 159 is no big deal.  SVT doesn't usually happen until you are into the 200s.  But Capri is special.  She likes to be unique.  For her anything higher than 140 her heart rate becomes irregular and she goes into SVT.  The monitor said it had a good read on her so I knew she was really in SVT. I woke up Mike and told him to go get the stethoscope.  Listening to her heart she was at 164.  Our nurse had given us very specific instructions on what to do if we thought she was in SVT.  First, take your pinky and put it all the way into her mouth causing her to gag.  The hope is that it will shock her enough to re regulate the heart.  Watching the monitor as I did this it went from 155 to 110.  It worked. 115, 120, 130, 149... it didn't work.  She went right back.  Next try to stimulate her rectally. Using a Q-tip we did this again staring at the monitor.  152 to 105.  Perfect she's better.  115, 123, 149. Damnitt.  I don't want to do the next one.  I don't think I can do the next one.
 We watched her for awhile hoping it would go back down.  She bounced around from 130 to 160.  Finally we decided we needed to try to mimic the "divers reflex".  When you dive into a cold body of water your heart rate slows way down, sending your body into shock.      Obviously we are not going to throw her in a pool of ice so instead the Drs told us to take a bag of ice, wrap it with a wet cloth and place it over the bottom of her forehead, nose and mouth. Then the hard part.  You push down essentially suffocating her for 15-20seconds.  That was the longest 15 seconds of my life.  I couldn't do it, I had to have Mike.  She laid there, arms flailing, trying to scream and struggling to get away from the cloth.  After what felt like an eternity Mike let go and her heart rate dropped.  She continued to cry as I held her trying to comfort her.  I am grateful that it worked but I hope to God we never have to do that again.
We spent the next 30 minutes or so watching her monitor to see if her heart rate would stay down.  It bounced back and forth from 100-139.  We called the NICU to talk to a nurse to see if her still being in the 130s was okay.  Our regular night nurse wasn't working and the receptionist would not let us talk to another nurse.  They told us we needed to just call our on call doctor.  We haven't met with our pediatrician yet though and I have no idea if the on call doctor has any idea about our daughters case.  I don't want to wake someone up in the middle of the night for something that isn't imminent danger.  Finally the heart rate dropped to 107 and stayed there.  She fell asleep with her head on my chest exhausted from what just happened.    I spent the rest of the night barley being able to sleep, waking every 30 minutes to make sure she was stable.
This morning its like it never happened.  She is playing smiling and very alert.  We had an emergency and we handled it.  No unnecessary 911 calls or melt downs.  We did what we were taught and it worked.  Everything is fine.  We've got this.

Monday, September 2, 2013

one day at a time

Capri has been home for 4 days now.  We have been so involved in getting her schedule straight and figuring out how to make everything work that I haven't been on to write about how wonderful being home is.  We have spent the whole weekend holding, cuddling and loving our little baby.  Along with the great feeling of having her home their has for sure been many trials.  The first night here she only slept for about 2 hours.  She threw bile up 5 times and went through every blanket we owned.  She takes medications at 8am, 12pm, 4pm, 8pm, 12am, 4am, and 6am.  I was so worried that I was going to forget a med, or not wake up on time that I slept very little that first night.  Saturday was much better.  Capri was happy all day and Mike and I took shifts throughout the night.  Mike slept downstairs with her from 12-4 so that I could get 4 uninterrupted hours of sleep then I stayed on the couch from 4-8.

Sunday was B's birthday.  My baby girl isn't a baby anymore.  She ran downstairs first thing in the morning to let us know she was  a 3 year old now.  She was a big girl.  We spent the day playing with each other, staying off phones, internet, electronics.  That night my aunt, uncle, cousin and his wife came by to meet Capri.  They were in town bringing honey from our hometown.  It was so great to have family here and feel normal again.  That night we had a small birthday party with family and close friends.  Normally I stress about parties, wanting every detail to be just right.  I overspend on food and decorations and end up getting upset because everything isn't perfect.  Last night though I ordered a pizza and made a cake.  We had a few decorations that B had picked out a few weeks back and we just spent the time visiting.  No stress, no overplaying, just relaxing.  It was great.  Stressing is way overrated.
Last night we put Capri in our room to see how she would do.  She slept until 6, was upset until 7 then slept until 9.  She is getting used to being home and everything is getting back to normal.  We had family dinner at the table every night except sunday.  I can not remember the last time we had dinner all together that wasn't at a restaurant.
I still am crazy stressed and afraid I am going to miss something.  I check her temperature every few hours to make sure she is not to hot or to cold.  I have her med list written down in my phone, in her binder and on a white board in the kitchen, i triple check every med i give her afraid I am going to do something wrong.  I have tubes all over my house and am constantly worrying that someone is going to trip over them or that the oxygen tube will get kinked in a door and I wont know.  I hope that as we move forward things will become more normal and not quite as scary.  Right now we are just taking things one day at a time.

Thursday, August 29, 2013

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

Wednesday, August 28, 2013

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

Monday, August 26, 2013

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.

Saturday, August 24, 2013

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.

Thursday, August 22, 2013

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!

Tuesday, August 20, 2013

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...

Sunday, August 18, 2013

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!

Friday, August 16, 2013

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.

Wednesday, August 14, 2013

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.

Tuesday, August 13, 2013

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...

Monday, August 12, 2013

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.

Sunday, August 11, 2013

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.

Saturday, August 10, 2013

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