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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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