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6

Henri,  You are turning into a boy.  Your baby chub is gone.  You’re getting so tall.   You started kindergarten and boy does your teacher love you.   I’m glad she thinks you’re as amazing as I do. You are gentle and soft. You are smart and witty.  You are really starting to show your funny side.  You love to joke and make us laugh. You are also very serious and determined.  You are tough.  So tough, you’ve never cried for a shot or getting your blood drawn, ever.  You can finish a 500 piece puzzle in a matter of days. You are brilliant and I am lucky you are mine.  Love you so bad.

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9

Ava,  You are growing up so fast.  You turned 9 in the blink of an eye.   I think back to being in the hospital after having you.  20 years old, clueless and in love.  So in love with you.  You made me a momma.  We’ve grown up together.  You are strong willed and can test my patience.  You are kind and have the biggest heart.  You are wise beyond your years, understanding and caring.   You love animals and we’d have a farm if I let you.  You are outgoing and life is a party.  You are innocent and still my little girl.   You are brilliant and things just come natural to you.  You have a strong testimony of your Heavenly Father.  You are so good to your brothers and sister.   You are my best friend.   You are beautiful.  I love watching you grow into a beautiful young lady.   I love you so bad.

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Here’s to a new year

2013 I say you were a terrible year and Ivan disagrees and says it was the best year of our lives.  I say I’m glad to see you go.  I had the hardest pregnancy of any of my pregnancies.  I had debilitating anxiety.  I don’t know how I made it out alive.  I have never and hope to never feel that way again.  I am sad for anyone who suffers from anxiety on a regular basis.  It is very real and very emotional mental and physically exhausting to live in a state of constant fear and worry.  My midwife told me I had the  pregnancy I did to prepare me for what was to come.  I think she’s right.  I’d say this year changed me more than any year, possibly all other years combined.  Jack was born with a sick heart and its been a long recovery.  Not long in terms of chd but long for what I thought was a healthy baby.  I am so blessed and the last half of the year really was amazing.  I have a whole new respect for the amazing man I married.  The father he is to our babies.  The babies we have and all the happiness they bring to this family.  I really do enjoy every single day.  Maybe its come with age maybe its come with grieving what I thought would be the loss of my baby.   I emotionally prepared myself for Jack’s passing.  I hardened myself in a way.  I knew Id have to be strong.  I stuffed down those feeling of not thinking I could move on and live without this baby.  The baby I loved more than life itself.  The baby I wished over and over I could change places with.  I imagine a piece of a mother dies when she loses a child.  I didn’t lose him and I thank my heavenly father everyday for that but I think that part of me is still fragile, still trying to come back.

//This year I’m going to focus on my family all the other stuff can wait.  My house doesn’t need to be spotless.  I know someday Ill miss those filthy hand prints on everything.
//I’m going to make sure my kids know how important they are to me and how much I love them.
//I’m going to date my husband.  Marriage is something you always work on,  you don’t take it for granted.
//I’m going to work on raising money for hospitals and families in need.  Something as small as a blanket or toy or someone letting you know its okay to be sad and angry when you are in the hospital can make a world of difference.
//I’m going to be a good friend and be there for friends that need me.
//I’m going to work on finding my strengths and talents.  Ive got to be really good at something besides diaper changing.
//Most importantly I’m going to enjoy myself.  Happiness is what you make it.  Its not a place or a thing.  Its a decision you make and I chose to love every minute or at least most of them. To laugh off the hard ones and cherish the good.

A year in pictures

^^^I laugh every time I see this picture of Ava this is the look of a child whose being tossed from family member to family member while her parents are in the hospital.  I can only imagine what the photographer thought when she walked in looking so disheveled.

Here’s to 2014
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Cardiologist TAPVR 8 month check up

We just had Jacks 8 month cardiologist appointment.  I get so nervous for these appointments.  I worry about what they will see in his echo.  Will he need another surgery?  Will the pressures in his heart be where they should?  Is his confluence growing?  All these thoughts and emotions run through me the week before.  Jack still has a hole between his right and left chambers.  All babies born with TAPVR have it.  Its the only thing that keeps them alive.  Normally they close it when they are reattaching the veins to the heart.  Jacks couldn’t be closed because the pressure in his heart was too high from him being undiagnosed for 2 weeks.  His cardiologist said we’d watch it and best case scenario its closes on its own, worst case he has a catheter procedure and they go in and close it when he’s a few years old.  We also watch to see how his confluence is growing, where they attached the veins.  Its scar tissue so it can be unpredictable.  Ideally it will grow with his body and get bigger as he does.  If it doesn’t grow then they would have to go back in and do another open heart surgery and make it bigger.  So I worry, I can’t imagine him going through all of that again.  At his four month cardiologist appointment everything looked good but still unchanged from his 2 month.  I have to be honest I was a little discouraged.  I get sad that they couldn’t close the hole initially.  I just want this all behind him.

We always start with an echo.  The best advice I can give any parent when taking your child in for an echo is be prepared.  It can take an hour and babies hate laying flat for that long.  I pumped milk, brought toys and had his favorite music.  The other option is a sedated echo and no parent wants to do that.  Of course they can’t tell you what they see on the echo so we head into the room and wait for the doctor.  Our doctor was at lunch so we had to wait an hour in between the echo and actually seeing the doctor.  Pure torture I tell you.  The doctor came in and looked over Jack.  He always tells me he can’t believe how bad he was and how great he is now.  He’s putting on weight and growing like a champ.  He said his confluence is growing and his hole is closing!  I really was shocked and amazed.  Jack is a fighter and blows me away everyday.  This really is the best news we could have ever gotten!  We don’t have to go back for 8 more months and if everything continues the way it is we can go to once yearly appointments.  Wahoo!!!!

Cardiologist appointment

His scar is really starting to fade
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Joys of sitting in the waiting room for an hour I want that picture above Ivan’s head to hang in Jack’s room
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PCH Ignite Hope Walk

PCH has done so much for my family I want to give back in any way I can.  This year we did their annual Ignite Hope Walk.  We walked 1.7 miles to the hospital with battery operated candles and sang Christmas songs to the children inside the hospital.  They came to their windows and looked down on us singing to them.  It was so emotional.  There was a time when we were up there looking down at the street.  You feel so isolated in there.  I remember sitting in that hospital room and the nurse saying “you need to open the window or turn a light on”  I hadn’t even realized I had been sitting in the dark for an entire week.  It can become very depressing.  I hope we brought some joy to those little faces.  They surely brought the spirit of Christmas into our hearts.

PCH Hospital

They spelled out the word HOPE in the window and you can see all the faces looking down
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PCH
I have such mixed emotions about being at the hospital.  I love it, it saved my sons life.  Im so grateful for modern medicine.  At the same time its so hard to go there.  It was the darkest, hardest period in my life.  It changed me forever.  I faced death and a second chance at life all at the same time.  I think the more time passes the easier it will be for me to visit.
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6 months

I don’t normally celebrate a 6 month birthday but this one I had to.  It was a big day for Jack.  A big day for all of us.  We’ve all been through so much in his 6 months of life.  We are lucky to have this birthday to celebrate.

Jack is too little for cake and I can’t eat dairy while nursing.  It seems to really upset his stomach.  So we watched the others pig out.
Jack did get his first taste of baby food.  The little porker loved it.
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Home

I remember being so scared to take Jack home.  I had gotten so used to reading all his stats on the monitors.  I couldn’t imagine not having those monitors there telling me exactly how he was doing.  I kept telling the nurse I need one of these machines in my house.  She said everyone feels that way.  You have to learn to look at him and know how he is doing.  Stop reading the monitor and start getting to know the new normal for Jack.  Jack was fortunate enough to not have to go home on a breathing machine or feeding tube.  He did go home with a lot of medicine and a weaning schedule.  I felt nervous and inadequate.  I’m not a nurse, what if I mix up his medication.   He had 8 different types of medicine that had to be given at 9 different times through out the day.  Some were to keep fluid off his lungs and I had to watch for swelling in his face as I weaned him.  Another was for pulmonary hypertension which we didn’t know if he would need for the rest of his life because of his sick lungs.  Thankful his lungs completely recovered.  He was on 3 different pain killers one of them being methadone.  Methadone is scary to me and I was just supposed to administer it to my month old baby?  We soon learned how to be his nurse.  I got more comfortable with the medicine and his weaning schedule.  He came home on so many pain killers and seemed sedated most of the time.  As time went on I could slowly see him waking up more and becoming himself.

One of our nightly medicine doses 

Over the course of the next three months we slowly weaned him of all his medication.  We met back with his surgeon.  They said he is healing beautifully and his lungs are looking better.  He sees his cardiologist at 2 months and 6 months.  Both visits are great.  They tell me watch for difficulty breathing, sweating and anything out of the normal.  Jack is a very sweaty baby so this always worries me.  Sweating can be a sign of cardiac failure or sweating can just be sweating.  He can leave sweat puddles in his car seat and even when he is just lying there sleeping.  We live where the temperature can be 115 for most of the summer so its not a surprise that he sweats.  If it were any of my other babies I wouldn’t have thought twice but with him I worry.  His cardiologist says he always looks great and its just his make up. His echo looks the same.  Babies with TAPVR have a small hole between the right and left side of their heart.  This is what is keeping them alive.  It has to be closed.  Usually it is done with the first surgery but with how sick he was they couldn’t close it.  His is still open and measuring the same.  We will watch it over the next few years.  I pray it closes on its own but if it doesn’t he will have another surgery to close it.  Its a simple catheter procedure.  They go in through his groin and close it up.  The other thing we watch for is how his confluence (where they attached his veins) grows.  As he grows his veins will grow and the spot they attached them to should grow with him.  Since its scar tissue you never know how it will react.  It could grow just like normal or it could stay as small as it is now.  If it doesn’t grow he would have to have another open heart surgery to make it bigger.  That’s worse case scenario and I don’t even like to go to that place in my head.  Right now I have to take things day by day, moment by moment and I’m enjoying these moment.  Ive never enjoyed life as much as I do right now.  I am truly thankful for everyday I have, I am so thankful for our health.  I am very blessed and grateful for each and every person in our lives.  I am grateful for all the prayers and well wishes.  I love you all and for anyone out there reading this I hope this can give you insight to what life with a heart defect is like.  I didn’t personally know anyone with CHD before my son and Ive met many wonderful families along the way.  Its nice to get an idea of what the future holds for you and your child, I love meeting older kids with CHD seeing them live happy normal lives.

 love to watch this chubby face sleep

 

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Life with TAPVR

We arrive at the hospital where Jack will be having his surgery.  We don’t check in or fill out paper work.  They rush us up to the 5th floor, Cardiac ICU.  Hes getting another echo to make sure the surgeon knows exactly what he’s going to be fixing.  We run up to the room hes in.  His name is already on the door.  The very first thing the cardiologist says to me is where did you deliver your baby?  He says babies with this don’t go home they have surgery immediately after birth.  I’m told its a miracle hes alive.  I often look back and I know I shouldn’t but I think what if I would have waited until morning?  Would he have passed in the night?  Would they have told me it was sids? I wouldn’t do an autopsy on my newborn.  It would have been something that got over looked that is correctable.  We walk him to surgery.  We meet the surgeon, he tells us this is our only option to save his life.  We sign the paper and they take him away.  The longest 5 hours of my life.  They call and update us. Hes on bypass, the doctor is working on him, hes all done but we cant go in for an hour.  The surgeon told us he may have to leave him open and close him up in a few days.  He wont know until hes working on him.  I don’t know what to expect.  The surgeon comes up to meet us in the waiting room.  He sits down with a banana and says everything went great.  It was the shortest surgery hes done of this kind.  He closed him up.  He tells us his lungs were very very sick.  Typically that isn’t the case with this heart defect but since he went weeks before having it corrected his lungs were filling with blood.  He has to be on a pulmonary hypertension machine, this isn’t common for this CHD.  We go in to see him, already I can tell hes doing better.  His oxygen is in the 90’s.  Its been in the 70’s and 80’s for the past week.  100 is perfect. His heart rate is perfect.  The doctors tell us this is a long recover and to add an additional week to two weeks for him being so sick when he came in.  We could be here for months.

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Medicines after surgery

Each of these long green rectangles is medication he was on a constant drip

Jacks nurse Larry has a special place in my heart forever.  He called Jack “pup”.  The name has stuck.  He will forever be pup.  He talked to him, he was sweet with him.  The next 24 hours are critical.  It will tell us how his body is adjusting to the repair.  They start him on breast milk through a feeding tube.  He’s doing well and then we have a set back.  He gets chylothorax, a leak of lymphatic fluid.  We are told this could happen and if it does he has to be put on  a fat free formula that taste awful and is difficult to digest.  The formula upsets his stomach and he has screaming fits over the course of days they up his sedatives.  We are adding medicine rather than weaning him off.  I keep telling the nurses I think its the formula, some agree some don’t.  They say there’s no other option he has to be on it for a minimum of 6 weeks.  Each day is spent trying to wean medication but also keeping him comfortable.  We bolus feed which is a large dose over the course of an hour and he screams and throws up.  The feeding tube comes up every time he throws up.  We try a small steady dose of constant food.  He just cries.  They stop feeding him because the crying fits are so bad that hes burning more calories crying than hes getting from the feeds.  I hate that they have to sedate him more to keep him from having hours of crying fits.  The dietitian says there is a way to take the fat out of breast milk but its difficult and they don’t like to do it.  After almost a week of begging and pleading that we try breast milk again one of the cardiologist at rounds says lets try it.  He said it could have been a false positive. True chylo shouldn’t go away as fast as his did.  We start up breast milk again and the crying fits go away completely and the chylo never comes back.  We stay in the hospital for two full weeks after surgery.  Each day he does better.   He relearns to nurse and breathe on his own.  We finally get to take our boy home at exactly one month old.  The doctors are amazed at how fast he recovered especially considering how bad he came in.  That last day is the day they told me just how bad his situation really was and what a miracle he is.  I do get sad that his first month of life, all those sleepy days, baby yawns and newborn stretches were taken from me.  I missed out on so many diaper changes, feeds and baths.  I realize how truly blessed I am to have him.  I am heartbroken for the families that don’t get to take their baby home.  I never in my wildest dreams thought TAPVR would come into my life.  Everything has been put in perspective because of it.  I no longer stress about the small things.  I never take a moment for granted.  I take lots of pictures and enjoy all of life’s chaos.  You really never know what tomorrow brings so enjoy today.

Homeward Bound

 

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Finding out Jack was sick

I had a perfectly healthy pregnancy.  My ultra sounds all came back great.  We truly had no idea our baby was sick.  I was nursing Jack in the hospital after I had him and I thought his breathing seemed odd.  Almost as if his whole body went up and down with each breath.  I asked the nurse if his breathing was normal and she assured me it was fine and that babies breathe differently while learning to eat.  I didn’t know to ask what his pulse ox came back at.  I didn’t even know what a pulse oximetry test was or why they taped that little red light to their little toe.  A pulse oximetry test is one of the most important test your baby gets.  It measures the oxygen in their blood.  This test is a red flag for a congenital heart defect.  Unfortunately not all states require it but our state does.  He failed his and they tested again and he passed with the lowest possible reading.  I had no idea.  I went home 24 hrs after having him.  Sometimes I am grateful for that week I got with him, my perfect little angel.  Before tapvr before the stress and worry.  But because he went so long undetected his little body suffered worse than it should have.

The few photos I have without his scar
At around 6 days old Jack started throwing up.  No big deal, my third had acid reflux.  I was ready to deal with it again.  His poop started to slow down and became a darker color.  I didn’t think much of it he was still getting used to eating and being out in this strange world.  On his 8th day of life he spit up and it was bright yellow.  I started worrying I called Ivan and said he threw up bile.  Then he threw up again.  I called my pediatrician and left her a message.  It was after 5 o’clock and she didn’t want me to go the whole night with out him being looked at.  She said I’m sure hes fine but I want you to take him to the closest children’s hospital and have him looked at.
We get to the children’s hospital, it is attached to the adult hospital and the emergency room is being remodeled so they are sticking the kids and adult all together in the waiting room.  I stand outside of the hospital with my tiny newborn baby.  Ivan checks us in and I tell him call me when they are ready for us.  My baby has acid reflux and they are going to send us home, I certainly don’t want him catching whats in there.  Ivan calls me in, they want to check him in and put a band on his wrist.  The lady asks me whats wrong.  I tell her hes thrown up a few times.  She asks to see him.  I’m hesitant, shes been touching sick people.  I pull the blanket down and hes looking grayish. She asks if he always looks like that and I said no.  My life then turned into a movie.  She rips him out of my arms, hits a button that sounds an alarm and flashing red lights.  Doctors and nurses go running into a resuscitation room.  They put an oxygen mask on him.  I can hear him screaming and I cant do anything to help him.  The Doctor is asking me what happened.  I have no idea, he’s not sick he doesn’t have a fever or a cough.  I haven’t had visitors that could have passed on their germs.  They tell me he has to be intubated, hes not getting enough air.  I can’t stop sobbing.  The pain of seeing your baby lifeless covered in tubes is indescribable.
The throwing up and slowing of bowels lead them to think something is wrong with his stomach or intestines.  Initially they test for pyloric stenosis.  They insert a dye into his stomach and wait for it to pass.  We waited hours and his stomach wouldn’t pass the dye into his intestines.  When your body is as sick as Jacks was it stops making blood and starts shutting down organs starting with the least important, the stomach.  We ruled out anything with his stomach and moved on to other things.  His lungs sound “crunchy” all the doctors say.  His lungs are sick and they tell us he has pneumonia that started as a staph infection.  How is this possible?  I didn’t let anyone come over, we weren’t sick.  How could he be sick?  Day after day he wasn’t getting better he was getting worse.  They retested for staph and it wasn’t showing up but he was still sick.  He never had staph, it was a contaminated specimen.  Six days of sitting in a hospital room by his side. Crying, praying, begging and pleading for him to get better.  He had so many x-rays, ultra sounds cat scans and nothing.  No answers.  I was in physical pain my heart physically ached as I sat there watching my baby slowly die.  I couldn’t hold him or comfort him.  I couldn’t feed him or change his diaper.  All we could do was sit, sit and wait for our prayers to be answered.
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The entire week was horrible but the night before his surgery was the worst night of my life.  We still didn’t know what was wrong with him.  When you have a baby on life support they sometimes try to fight the machine. His little body would breathe against the machine.  Alarms would go off.  People would rush in, they’d tell us he was fine they just had to adjust the machine or his medicine.  But the last night before surgery he kept fighting the machine.  His oxygen levels would drop dangerously low, his heart rate would drop.  All night the doctors and nurses would come rushing in to the sound of alarms and try to stop him from working against the machine.  Nothing was helping.  They paralyzed him, laid him on his stomach and made the machine do all the work.

That next morning they had a cystic fibrosis test scheduled and while making the rounds his doctor said lets do an echo cardiogram of his heart.  At this point they had done so many tests I thought this one would come back fine just like all the others.  My three other kids were being cared for by our family and my oldest needed to go to the doctor.  Ivan told me to take her, I hadn’t left that hospital in 6 days and only seen my other 3 kids once.  I got to her school to pick her up and got a call I will never forget.  He said come back here now.  My heart sank, I thought he had passed away while I was gone.  The one time I left in a week and he passed without me by his side.  He said hes ok but we have to talk and make some decisions.  I raced back to the hospital, left my daughter at the nurses station and went to Jacks room.  The cardiologist told us Jack had infra cardiac TAPVR.  The veins that should attach to the left side of his heart and carry the blood back, attached to his liver.  The left side of his heart wasn’t receiving blood.  He was air-evaced to PCH while we drove over.  As devastating as it is to hear that your son needs life saving open heart surgery after a good hour of crying as they prepped him to be taken I felt at peace.  My prayers were answered, we finally knew what was wrong.
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Jacks Birth

Monday April 15 2013, I remember it like it was yesterday.  Tax day, the day of the Boston bombing, the day I brought my 4th sweet angel into this world.  Im not normal, I don’t go into labor on my own.  At least not until I had Jack.  I had become somewhat of a joke to those who know me.  Ive gone all the way up to 14 days late with my second baby.  I wait as long as my midwife lets me then she strips my membranes and finally a few days later I get to hold my newborn baby.  I was 8 days late with Jack and started to have labor pains Sunday night but couldn’t believe they were real.  This has never happened.  Sure enough they were.  When I got to the hospital I was a 6 1/2.  I move quickly and before I knew it I was ready to push.  This was my first time without an epidural but there was no time for one so pushing this baby out was my only option.  It was truly one of the most amazing experiences of my life.  My midwife told me to reach down and pull him out and I did.  I set that baby right on my chest and instantly fell in love.

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I knew from that moment something wasn’t right.  It wasn’t anything I could see.  It was what I felt inside.  I kept thinking this is just my hormones.  I hate the baby blues.  I couldn’t shake the feeling.  I felt like I didn’t have time with this baby.  I enjoyed every second of him feeling like he wouldn’t be mine for long.  I remember telling my husband to sleep, Id take care of him.  I didn’t want visitors.  I didn’t want anyone taking away the time I did have with him.  He was such an easy sweet baby.  Slept the day away in my arms.  That first week home from the hospital is one I will forever cherish.  Its the only newborn stage I had with him, the only memory I have of his beautiful little body before the scars.  The next three weeks were taken from me.
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