Wednesday, May 9, 2012

Happy Heart Day - 6 Years Post Surgery

I'm not even going to try to describe the place I was in 6 years ago today - I'm just not that good of a writer and truth be told I have blocked out huge patches of the day and the ones following.  6 years ago today we held our baby in our arms and wondered if it was the last time we would be blessed to do it.  6 years ago today we gave our baby to a team of people with years & years of training and experience to operate on a heart that wasn't much bigger than a walnut and it terrified us.  6 years ago that team did everything they could to keep our fears at bay and successfully repaired the little hole that threatened the life of our baby.  Because of that team we are able to celebrate this Heart Day anniversary and we are so so so thankful.

Sorry for the length of the rest of this post but all I have is my memory and copies of the emails I sent my friends.  These are the pre-blog and CaringBridge page days for me, remember!  So here I want to retell the whole OHS story as a record for me before I forget any more and also since many of you are moms of young ones some who are facing this in the future.

Cate was born with a Complete Atrioventricular Septal Heart Defect (AV Canal defect).  Here is the medical information for this defect:
Atrioventricular septal defects (AVSD) are a relatively common family of congenital heart defects.
Also known as atrioventricular canal defects or endocardial cushion defects, they account for about 5 percent of all congenital heart disease, and are most common in infants with Down syndrome. (About 15 percent to 20 percent of newborns with Down syndrome have an atrioventricular septal defects).
The primary defect is the failure of formation of the part of the heart that arises from an embryonic structure called the endocardial cushions. The endocardial cushions are responsible for separating the central parts of the heart near the tricuspid and mitral valves (AV valves), which separate the atria from the ventricles.
The structures that develop from the endocardial cushions include the lower part of the atrial septum (wall that divides the right atrium from the left atrium) and the ventricular septum (wall that divides the right ventricle from the left ventricle) just below the tricuspid and mitral valves.
The endocardial cushions also complete the separation of the mitral and tricuspid valves by dividing the single valve between the embryonic atria and ventricles. An atrioventricular septal defect may involve failure of formation of any or all of these structures.

So basically she had a shared valve between the top two chambers of her heart with a hole beneath that which allowed oxygen-poor and oxygen-rich blood to mix.  This defect made her lungs and heart work much harder just to circulate blood to her body, if it had not been fixed she would have had breathlessness, low energy, and eventually probably would have had heart failure as a result.   Cate would not have been a kindergartner, not be taking dance class, wouldn't be on a swim team and probably wouldn't sing at every opportunity.  Cate would not have been the normal child she was meant to be - it is as simple as that.

Cate was a chubby happy baby prior to this surgery - not a sick or weak baby (which  maybe even makes it harder when you hand your baby over to the doctors) but even then she was taking Lasix, a drug to prevent congestive heart failure, because there were signs of stress on her heart & lungs.
4/15/2006 - Cate at Easter

5/4/2006 - Cate's favorite bouncy chair & lamb (the one which Ric would hold for the entire surgery)

5/4/2006 - bath time
The morning of the surgery we had to be at the Children's Hospital downtown for a 7:15 am surgery time so we were up and moving by 3 am (not that I could sleep anyway) but we still managed to take one picture.  This was a time pre-cell phone cameras for us and a camera was not on our list of hospital essentials so we don't have a CICU picture of Cate.  In some ways I wish we did to document that event but in others I'll be happy to never see a sight like that in my lifetime.
ready to go & Cate's face says "why are we up at this crazy hour??"
The morning of the surgery we checked in at 6:30 am then the nurse gave Cate a sedative by mouth to keep her calm in the OR - wish I could have had a dose or two or ten.  She fought off the sleepiness until 7am and we all took turns holding her (grandma & grandpa were there too).  We were allowed to carry her to the OR door then handed her to Gretchen - the most awesome nurse ever.  Gretchen called us in the waiting room every half hour to keep up updated during the surgery.  The first call was to tell us Cate was fully sedated and to say that once she laid Cate down on the table, she opened her eyes looked up at everyone and smiled - so they were all completely charmed from the first minutes!  The surgeon repaired the holes (they had found a third surprise one during pre-op) and fixed the valve.  Cate was on a heart-lung machine for nearly 2 hours, but they got her off it in record time (the nurse had said it would be about an hour and it was only 20 minutes before they were calling to say her heart was under her control).  The doctors did an internal ecocardiogram prior to closing her chest so they knew everything was working correctly before they repaired her sternum and sewed her up.  The surgeon and a cardiologist both came to talk to us and told us it was a perfect repair and no problems were expected.  Cate was then moved to the Cardiac Intensive Care Unit (CICU).  When we first saw her it was a shock because there were so many tubes including the huge chest tube (over an inch round) a couple inches below her incision.  The first CICU milestone was for the major chest drainage to stop so they could start getting her off the ventilator.  In the CICU there is 24 hours nurse care, with each nurse responsible for only two or three patients and no parents are allowed to stay the night.  One thing you learn in the CICU is that as bad and scary as your situation, its not the worst one there and you have to be thankful.  Cate was obviously well cared for so Ric & I went home and managed to sleep that night with only a couple check in calls. 

By 10 am on day 2 Cate was off the ventilator and breathing on her own.  She was very unhappy at this time because she was starving since it had been almost 36 hours since she had eaten but we still had to wait until 3 pm with no issues before she could have something in her tummy.  She didn't seem to be in pain during this time and was pretty sedated although she did squirm and fuss some and we were not allowed to hold her while in the CICU.  There was one scary moment that day when she went a little too far under sedation and her oxygen stats dropped rapidly but the nurses were able to wake her up and increase the oxygen to get her back on track.  She was still oblivious to her surroundings and us so we went home again that night. 

On day three Cate was taken off morphine so she was more alert and recognized us.  Her appetite started to come back and she took her milk from a bottle like a champ.  This was the day they also started weaning her off oxygen.  They took a couple of the smaller tubes and the pacemaker wire off on day 3 as well - the artifical pacemaker coming off was a huge milestone since damage to the pacemaker tissue is one of the big risks of this surgery.  That night they moved us to the step down unit where Ric & I needed to stay with her, but a couple hours after they moved us while I was feeding her, she had a small seizure - not shaking but she went rigid and her eyes twitched for quite a while.  So back to the CICU we went for more testing and monitoring.  Ric & I stayed the night at the hospital in the little sleeping rooms they provide by lottery (the mom who got our step down bed opened up a room for us).   After a night of monitoring and an EEG it was decided the seizure was of unknown origins but that it was most likely related to an electrolyte imbalance.  They moved her into a room that afternoon and she was a happy baby since she was alert and the chest tube came out - another huge milestone.    On day 5 they weaned her off oxygen and took x-rays to verify her lungs were clear then removed the last chest tube much to my relief - it was hard to manage holding her with those heavy plastic tubes in the way.  That day and the next were perfectly uneventful and involved us taking turns sleeping, holding Cate, feeding her and even giving her a much needed bath.

Cate came home from the hospital on Sunday May 14th - it was absolutely the best Mother's Day present I will ever receive.  She came home taking a few different medications but she was off of all of them by June that year.  When she came home she didn't have any stitches, only surgical tape on the incision.   Her care was pretty much like an infant except we had to be extra careful to prevent falls and could not pick her up under the arms.  We felt even more blessed that day we got home because not only did my sister in law keep our dog so she didn't have to be boarded, my parents cleaned our house and did our yard work so we were actually able to catch up on some sleep.
daddy not taking his hands off his girl even with both of them asleep

we did story time ever night from the day Cate came home from the hospital after her birth and still do, the first day home from Childrens was no exception

By the time we had our follow up appointment on 5/18,  Cate was pretty much back on her normal schedule.  She was playing with her toys and had started smiling again.  In my update email that day I wrote she was much more cranky then normal and we thought she had some soreness and the medications were upsetting her stomach.  I attached these pictures to the email I sent out to thank everyone for the help during the post surgery time.  We had so much help, even our neighbors, most of whom we had never met, got together and brought us full dinners every night for at least two weeks.
this bear was a gift from my team at work - she still plays with it

this overhead play yard was always a favorite but it became invaluable post surgery

This is 9 days post surgery - the bruising cleared up soon after as did the marks on her face from the tape but that round sore under the incision where the chest tube was took forever to heal - it is still a good size scar
By the end of May 2006 Cate was pretty much back to her pre-surgery self.  There was a small heart murmur they thought was most likely at the edge of the repair but eventually it closed itself up.  By that time Cate was happy and eating like crazy.  We had added an ounce of milk to each feeding plus rice cereal and she had gained almost a pound to come to 12lbs 11ozs.  On May 30th we were off all but two medications and were released from the surgical care to only having monthly appointments with our cardiologist.  I think those lasted until the end of the year when we were released to yearly appointments with him that we still keep up with now. 
Cate - 5 months

Memorial day 2006 - getting her first "real" food
Today six years later her scar is a faint white line about 3 inches long and is a reminder of what she went through and what a brave baby she was that day.  We still celebrate heart day because we will never forget what a miracle it is that our baby is healthy and active.  If Cate was born 50 years ago she most likely wouldn't have the same life, she would be weak and sickly, maybe she wouldn't even be here to brighten our lives.  We are so thankful for all the doctors and nurses, our families, friends and neighbors. 
We still celebrate Heart Day so that we never forget the gift we've been given.  This year I asked Cate's kindergarten teacher if we could bring in a special snack for the class to celebrate Heart Day.  She responded not just yes but created a day around it including a parent coming in to do a lesson on the heart.  We are so blessed to have her in Cate's life as well - every time I walk into that school I feel overwhelmed by support for my sweet girl and just know she will reach for the stars with their help.
Cate handing out heart cupcakes to the class

an art project on the wall at school
Thank you for indulging my long story!
Happy Heart Day!!!


  1. Love the pics of Cate as a baby!!! And love soooo much that her teacher made a celebration day around this. That's amazing!! Happy Heartiversary, Cate!

    I know all too well how hard it is to hand over a seemingly healthy baby! Sammi wasn't in heart failure, wasn't on meds, had gained lots of weight and was doing fine. We had to come home with oxygen for a few weeks - probably the longest couple of weeks of our lives. Ugh. And you're absolutely right - as hard as it is seeing your child hooked up in CICU, there are some really heartbreaking stories surrounding you. It definitely put things in perspective.

  2. This is such a beautiful post. She was a breathtaking baby, oh my word! Happy Heart day to Cate and of course, to you. Our babies won't ever remember these details, but we always will, won't we (even if some of the details fade.) Thank you for sharing her story.

  3. Love this! Our Kate also was born with a CAVD and had her own heart surgery on December 14th, 2012 at the age of 3.5 months. She was a brand new baby afterwards - full of energy and so much more alert! I like to think there is no stopping her now! We are now in the new adventure of OT and working on getting those muscles moving. :) Your kindergarten post is beautiful and gives so much hope that the days ahead will be full of more joy for us too. Thank you -

    1. So glad your Kate did well after her surgery. You are in for a real adventure now!