To start off, I would like to introduce my family. Ian and I
(Amanda) have been married for three years in June, and we have one kid, and
one pup: Elyse, our 20 month old Heterotaxy Hero, and Trixie, our 3yr old 7lb
Maltese/ Yorkie mix. Ian and I met and married in San Diego California, then 6
months later Ian accepted a job in the Central Valley, about 5 hours north of
San Diego. Ian works as a Physician’s Assistant at a clinic here and loves what
he does! I graduated college in April and am lucky enough to be a stay at home
mom to Elyse.
Our journey started the summer of 2014. On July 2nd
(I was 16 weeks pregnant) we found out we were having a girl and were so
excited! We named her Elyse right then and there and never had a doubt about
her name. On July 28th we went in for our 20 week ultrasound. Already
knowing she was a girl we were not concerned about hearing anything else. We
went home and started painting her nursery. An hour later we got a call asking
us to come back to the office and meet with my OBGYN. I didn’t think anything
of it but Ian, being the medically minded person that he is, knew something was
wrong. We walk in and the first thing that my Dr. said to us was “This is not
your fault, you did nothing wrong”. Then he explained that they had a hard time
finding Elyse’s left ventricle and that the other organs in her body (stomach
and liver etc.) were not in the right place. I bawled. He referred us to the
local children’s hospital an hour away and said we would be getting a call
soon.
A week later we made the drive and met with Perinatology and
then they sent us over to Cardiology where they did a 3 hour fetal echo.
Finally a cardiologist came in and explained to us what they found and what we
needed to do, as well as the fact that Elyse had Heterotaxy. All I could hear
was Charlie Brown’s teacher explaining it, but luckily Ian understood it a bit
better. Her official diagnosis and all of its components are: Heterotaxy, LAI,
Polysplenia, Intestinal Malrotation, right sided stomach, midline liver, HLHS,
DORV, Interrupted IVC, and VSD.
That was a lot to take in for anyone, especially for a
family experiencing their first child. The next 20 weeks were filled with love,
fear, compassion, prayers, and lots and lots of tears. One of the hardest
things was keeping it together in public. Our first Sunday back at church after
hearing the news was the hardest. We go to church where families are so
important and someone always has a newborn. I felt peace there, but my heart
was breaking on the inside not knowing if I would ever get to bring my child
home. I felt jealousy for these people that had perfect little families and
over time that jealousy was replaced with gratitude and love for them. Gratitude
that they weren’t having to go through what we were, and love because they
deserved it.
We told only our family in the beginning and then as the day
grew closer we told more close friends as we needed to have a plan set up for
our dog to be cared for while we were in the hospital. We tried our hardest to
move on with the preparations for Elyse. We bought her clothes and decorated
her nursery even though we knew that she may never get to wear the clothes or
sleep in her nursery.
We met with Perinatology, the cardiologists and my new OB
(as I had to be seen by a high risk OB an hour away) weekly and more than
weekly at the end. We did NSTs, and biophysical profiles up to three times a
week at the end (again… an hour away). We even met with Elyse’s cardiac
surgeon; that was a hard meeting!
I was induced a week before my due date because the doctors
were worried that I would go into labor and not make it to the hospital in
time. After 50+ hours of labor and one hour of pushing, Elyse was born! She
looked great!! I got to hold her without any wires for just 30 seconds before
they took her and cleaned her up. Then they took her for about an hour and made
sure she was ready for transport (to Valley Children’s Hospital 7 minutes away)
then they brought her back in to see us in an incubator and daddy got to hold
her for the first time. She had wires that made it hard to hold her and a bit
scary, but she was so alert and interested in what was going on. She was
perfect!
The next 3 weeks we stayed at VCH waiting for her Norwood
procedure. She was doing great, the doctors weren’t going to do it unless she
needed it and so they didn’t. We waited for her PDA to close instead. While
waiting, Elyse’s cardiologist mentioned doing the LADDS procedure since we are
waiting there anyway and we would be able to go home without as much of a worry
of a volvulus happening. She was 11 days old when she had the LADDS procedure
done and she handled it very well. 8 days later her PDA was so close to being
closed that her doctors didn’t see why she couldn’t go home. Christmas Eve we
took Elyse out of the hospital into daylight and she got to feel the wind on
her face for the first time. The best Christmas gift we have ever received!
The next months were filled with lots of appointments and
talk of her next surgery, but she was doing great so the appointments went
further apart. We embraced this miracle and let her be a kid. We took extra
precautions when out and she got extra shots, but at home she was a normal,
happy baby. She was meeting all of her milestones and became very good at the
army crawl!
When Elyse was 7 months old her cardiologist noticed her O2
stats were dropping into the mid 80s. So we started being watched a bit more
closely again. They dropped into the low 80s and there was talk of a cardiac
catheterization to see if that would help her to go longer without heart
surgery. But it didn’t work. Her stats were in the low to mid 70s and we
prepped for surgery. 2 days shy of 9 months she went into VCH to receive her
Kawashima procedure. That was the longest 6 hours of our lives. But she did
great! When we asked what her heart looked like, her surgeon said “scrambled
eggs, just like I thought it would”, in a very light and playful tone. As they
moved her from the OR to the PICU we got to see her already extubated and wide
awake staring at us. The next 8 days were filled with long days and nights in
the PICU, but we saw improvements every day. 8 days after her surgery we were
blessed to bring her home. We followed up twice in 5 days and the second time
they admitted her again. She had a chylous effusion that needed to be treated.
Because Ian had already taken so much time off work, I braved this hospital
stay on my own. We were informed that she would not be allowed anymore breastmilk
(I had been pumping for her up to this point) but instead she was being put on
a low fat diet of Enfaport formula and low fat solids, as well as a slew of
medicine. So I stopped pumping (as I had a freezer full already and by the time
she was allowed breastmilk again she would be almost 1 year) and we adjusted to
the new diet. She was again sent home after 5 more days in the PICU getting her
chylous effusion treated. We returned 3 times a week at first, then eventually
twice a week and then finally just once a week for the remainder of the year.
Each visit was an hour drive there and back, plus labs, X-rays, and a visit
with her cardiologist (about 5 hours each visit). Come her first birthday in
December Elyse was crawling on her hands and knees, able to eat fatty foods
again and the happiest one year old ever! In January we were told wonderful
news… no cardiology visits for 4 months! That was huge! She started walking at
15 months, which didn’t last long before she was running! At the end of May we were
informed that we can go 6 months without seeing cardiology, and then her
pediatrician said (at her 18 month checkup) that he didn’t need to see her
until her 2nd birthday… 6 whole months without ANY doctors
appointments?!?!? What a shock that is and was to us!
Elyse is now a tall and skinny blue eyed and blonde haired
little 20 month old miracle. She loves playing with puzzles; helping mom cook;
playing at the park especially the swings; going on walks and hiking; shoes of
every shape, size and color; playing with Trixie; daddy coming home from work;
getting into anything and everything she can; cleaning (she grabs the swifter
duster or a baby wipe and cleans everything!); giggling; smiling and being a
kid!
Our little family is so incredibly blessed to have the Heterotaxy community and the heart families to lean on and learn from and to support. We appreciate the love and support felt and to be part of a group of people so full of love! We wouldn’t be where we are without the love and support of friends and family, as well as the love we feel from God.
This journey is not something we would have ever chosen for Elyse or ourselves, but we are grateful to have been able to come this far and are excitedly nervous for what is in Elyse’s future. We have no idea what else she will need, but we are confident that the medical advancements that happen every day will aid in her future and are grateful for every day we have and hope for many more.
Amanda Primavera - Mom to Heterotaxy Hero, Elyse
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