Our sweet Emma Kate was born on
November 13, 2007. She was born into a room filled with many doctors and
nurses, and lots of love, of course. We knew early on that we were going to be
parents to a very unique and special child.
At my 20 week ultrasound, we were
very excited to learn that we were having a baby girl. We also learned that day,
that our baby had Kidney Pyelectasis,
or an enlargement of part of the kidney. Two weeks later, I was sent to
Maternal Fetal Medicine so that the doctors could keep a close eye on her
kidneys. When I went to M.F.M., I was happy to learn that the kidney issue had
resolved on its own, but was devastated to find out that there were other
problems with the pregnancy. The doctor told me that Emma Kate had several
markers for Down syndrome. Not fully understanding the risks associated with an
amniocentesis,
I opted to have the procedure done, hoping that the results would help me to
prepare for the baby that I would be giving birth to, no matter the outcome.
The amniocentesis ruled out Down syndrome, and I continued to see Maternal
Fetal Medicine throughout the pregnancy. As the weeks went by, Emma Kate’s arm
and leg measurements continued to fall behind, and we were told that Emma Kate
would be born with a condition called Skeletal Dysplasia, or Dwarfism.
Fast forward to November 13, 2007. Emma Kate was
born with a fairly uneventful labor. After months of extremely stressful ultrasounds and doctor appointments, it was so wonderful to finally meet and hold her. She stayed with
us the whole day in our room, and got to meet all of our friends and family,
but throughout the day, her temperature continued to drop. At 9:00 pm, the
nurses came in and took her to the Special Care Unit. Little did we know the
next six weeks, would be such a roller coster.
Not long after Emma Kate was put in the Special
Care Unit, we realized that feeding was extremely difficult for her. She was
gavage fed, because we could not get her to nurse or take a bottle. The next
several days were spent working on feeding. One morning, my husband and I left
to go home for the first time since having Emma Kate. We needed to repack our clothes and prepare for our temporary move to Baton Rouge, so we could be as close as possible to Emma Kate and the hospital. I knew the doctors had
heard a heart murmur, and I knew that the cardiologist would be coming by to
take a look at her, but I did not know that that day would be one that would
change our lives forever. As soon as we walked into our house, my phone rang,
and I knew it was not good news. It was Emma Kate’s nurse telling us that we
needed to come back to the hospital to speak with the cardiologist right away. We
were introduced to Dr. Brumund, and he very gently told us about the problems
that he saw with her heart. I felt the world come crashing down around
me that day. Emma Kate was moved to the neonatal intensive care unit to await heart surgery.
Emma Kate’s heart had two problems, both of which
would require intervention. The first was patent ductus arteriosus,
and the second, was a much more complex defect called, complete atrioventricular canal. When Emma Kate was about two weeks old, she had a PDA
ligation, and we were hoping that her feeding would improve post-surgery.
Unfortunately, her feeding continued to be very inconsistent, and a gastrostomy feeding tube remained our
only ticket out of the hospital. On December 23, 2007, after 6 weeks in the
NICU, I got a call from Dr. Brumund telling me that we could bring our baby
home. It was music to our ears, and we loved celebrating Christmas at HOME with
our girl!
The next year and a half was filled with many doctor’s appointments and
therapies, but Emma Kate continued to remain extremely healthy. In May of 2009,
we left for Children’s Hospital Boston to have Emma Kate’s major heart defect
repaired. Once we got to Boston we realized there was a new problem that we had to deal with. We were devastated to find out that an echocardiogram revealed that Emma Kate also had narrowing of her left pulmonary artery. Open heart surgery had to be delayed until we could fix this new problem. On May 15, Emma Kate had a heart catheterization to dilate her left
pulmonary artery, and on May 18, Dr. Fynn-Thompson performed Emma Kate’s open heart surgery,
and everything went beautifully. We did have some minor complications with stridor
from the ventilator, which required one more trip down to the operating room to dilate her narrowed airway. Two
weeks later we were home with a repaired “normal” heart.
As Emma Kate’s development fell further and further behind, we continued to
search for a diagnosis. Full body x-rays in Boston
We are eternally grateful for our family,
friends, and church body who have been a constant encouragement and support to us. We are so thankful that God chose us to be Emma Kate’s parents, and we pray that He would continue to use her for His glory.
Emma Kate, October 2011
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