Wednesday, February 6, 2013

Four years ago...

This is a post in honor of Congenital Heart Defects (CHD) Awareness week, which begins tomorrow, February 7.  To kick it off and in honor of my daughter's upcoming 4th birthday (on February 19), I am sharing our story:

We have seen a lot of illness in our last four years.

My daughter was born almost two months early, so our first experience with childhood illness was right away in the NICU.  She was only there for a little over three weeks (that's her in the NICU - all wired up for monitoring), but we were at a hospital two hours away from home, staying with my sister, driving 45 minutes there and back everyday, washing our hands and arms and scraping under fingernails each time we entered, and sitting for hours in a small room with multiple babies and nurses, trying to bond with our baby while not being able to ignore other babies with no one there.  It was distressing, exhausting, and somewhat depressing.  But, we did it.

About three weeks after bringing her home from the NICU, we found ourselves in yet a different hospital - our local hospital.  She had been diagnosed with RSV.  She was still very tiny - so tiny that they had to put her in an incubator in our hospital room because she was lost in the crib.  I stayed with her at night and my husband would come and stay with her in the daytime, giving me a chance to go home, see our animals, take a shower and regroup.  Here, we were in a room by ourselves, so there was more of a feeling of isolation than in the NICU.   But, it was still distressing, exhausting and somewhat depressing.  But, we did it.

After almost a week in the local hospital, we found ourselves in a third hospital.  This time, she was flown on a helicopter to get there because her breathing was so labored.  We had to go home, pack clothes and follow in our car - another two hour trip away from home.  They called before we were half way there to tell us they were going to intubate her and asked, "has anyone talked to you about her heart?"  Which makes your own heart stop when someone asks.  It turned out that she had an enlarged heart and it was sitting on one of her lungs.  We arrived to find her intubated, paralyzed, and looking very, very ill:

It is unimaginable to go from a healthy, if somewhat small baby to this in a matter of a week.  In all honesty, I think I was in shock for a while.  I didn't know what to do or say or how to behave.  As I look back, I think I mostly just didn't think about it.  We sat in that room, with a baby who had a machine breathing for her and with no idea where we were going from there or what was happening.  After five days of specialists and medications and vague references, she had a heart biopsy - her first of what would be many.  They found her heart to be constructed correctly (as opposed to some Congenital Heart Defects in which the heart is constructed wrong), but it was in no way working properly.  They advised us to change hospitals yet again, referring us to Lucile Packard Children's Hospital in Stanford, which would become our second home.  There was a short talk about her possibly needing a transplant, but it was not something that seemed set in stone.  At that point, most of the talk was of getting her so she could breathe on her own again...beyond that, we didn't really know what would happen.  In all honesty, at that point, we didn't know IF that would happen.

We were then transferred to Lucile Packard and although they tried to make her heart better with medication (we even got to come home with her for a couple of weeks), we were soon back with a heart in worse shape and transplant as the only option.  She spent about five weeks in this condition:

Except, her eyes weren't usually open.  This was a rare instance where they let the paralytic off enough that she was able to wake up, open her eyes and react a bit.  What you don't see in this picture is the multiple IVs going into her body - she had two IVs and a "main line" into an artery at all times.  She was being fed through her nose and through IV nutrition.  She had not breathed on her own at this point in five weeks.  I did not know when I took this photo, but she would receive her new heart only three days later, on July 7, 2009, just before she was five months old.

Only one week after the transplant, she looked like this:

It may not be easy to see from this picture, but her color was amazingly better, she was breathing on her own again for the first time in six weeks.  She was being weaned off of oxygen and she was awake and interactive!  She soon after started relearning to drink from a bottle.  Three weeks later she looked like this:

She was happy, breathing on her own, and more and more interactive!  It is amazing what you can go through in a matter of months.

We have not had it easy since then.  As I read in this Huffington Post article about pediatric transplant, you are trading a terminally ill child for a chronically ill child.  But, chronically ill is alive.  We give Bean medications twice a day to keep her body from attacking her "foreign" heart.  She has had to have numerous biopsies and a second open heart surgery since the transplant (to fix a valve that was "bumped" loose during one of the biopsies).  She has had to have steroid treatments.  She has been in the hospital with pneumonia a couple of times and with a pleural effusion once (from the leaky valve).  She has had a tonsillectomy/adenoidectomy that required us to stay in the hospital for four days (even though it is usually an out patient procedure for healthy kids).  She has had to have blood draws and echocardiograms and x-rays and breathing treatments more times in her four years than most will have in a life time.  But, she is with us.  She is active and intelligent and a load of fun.  And today, she looks like this:

Not all families with children with heart problems are as lucky as we are.  Some are living life waiting...waiting for a "cure", waiting for another surgery, waiting for a transplant, waiting for good news.  We are able to live our life knowing that we have what we need right now.  We don't know what tomorrow will bring, but at least we know she has the heart she needs now.  We continue to have blood draws, echocardiograms, sometimes x-rays and she gets a lot of little infections that require antibiotics to help her fight them.  But we make it through.

It is a blessing to have her in our lives.  And I want to make sure that others are given that same blessing.  So, I urge you to be educated about CHDs this February.  Know the statistics, give if you can, and help some other family find the joy we have found.

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