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

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.

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.

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.

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.

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.

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.

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.