Answer: A heart defect that required surgery, but other than that her health has been that of a "normal" little girl.
She was getting sick a lot after starting preschool, and after her eighth time having strep, we had her tonsils taken out last May.
Here is my detailed description of the heart surgery experience:
Gwyneth was born with a hole in her heart called a VSD (Ventricular
Septal Defect). This drawing of a heart was given to us by her cardiologist to show where the VSD
was. The arrow in the picture shows where the blood was flowing through the
hole from her left ventricle to the right.
The heart defect was discovered on an Echocardiogram performed soon after Gwyneth's birth in March 2008. She needed to be on a small amount of oxygen and when we brought her home at 6 days old, we had portable oxygen tanks and a pulse-ox monitor. She remained on the oxygen until just before her surgery at 4 and a half months old in July 2008. Here's my non-scientific explanation of what the medical
team at Children's Hospital (in Aurora, CO) had to do to repair it:
We went to the hospital 24 hours before Gwyneth's surgery to
do some prep work. She had blood drawn, which she made her cry, but not too
much. She had an EKG (Electrocardiogram) where the electrical activity of her
heart was recorded by placing nodes on her skin. They are just stickers so she
didn't mind at all. She had a chest x-ray which was her least favorite part of
the day. In the radiology department, we were allowed in with her and were given
lead smocks to wear. They have a very large machine that looms over a low
table. They asked us to place Gwyneth on the table and hold her arms up next to
her head and hold her hips and legs down. Being held down is what made her
scream and cry. It was hard for us to see her so scared, but the x-rays were
quick. They took x-rays while she was lying on her back and her side, each time
with us restraining her while she was crying. Poor girl! But we were comforted
by the fact that we made many trips back to the radiology department for x-rays
after her surgery and she was completely used to it after a few times and let
us hold her down without any complaints!
She next had to be sedated with a drug called Chloral
Hydrate so that an Echocardiogram (an ultrasound of the heart) could be
performed. She had had many ECHOs in the past while being awake, but for the
surgery they needed a very clear picture of heart so she had to be completely
still. She was still "asleep" from the ECHO while we pulled her
around in our Children's Hospital red wagon and had a tour of the CICU (Cardiac
Intensive Care Unit) where she would go after the surgery was complete. We also
met with the anesthesiologist and the surgeon to discuss the surgery and talk
about the risks and recovery. That night we stayed in a hotel near the hospital because our home was an hour drive away and the surgery was scheduled for early the next morning.
On the morning of the surgery we washed Gwyneth's chest with
an antiseptic skin cleanser, then left our hotel to check in at 6 A.M. at the
hospital. When Gwyneth was taken away for surgery we waited outside the cardiac
unit for 4-5 hours. While the surgery was happening, we were given periodic
updates by a nurse. The surgery was "open-heart" which means they had
to open her chest and cut through her breastbone to expose her heart. They
stopped her heart for around an hour while a heart-lung machine pumped for her.
To repair the VSD, the surgeon stitched a small synthetic patch over the hole.
(For an excellent behind-the-scenes description of a surgery very similar to
Gwyneth's, check out the book "Choosing Naia" by Mitchell Zuckoff.
Naia's surgery is described in Chapter 17 and I felt chills while reading it.)
We sat and waited for news during the surgery with our red
wagon of essential items: pillows, suitcase of clothes, breastpump.... I tried to keep busy making a blanket, and Reid did
his best to distract me by making fun of my knitting skills. I knit an entire
row in Gwyneth's blanket before I realized it was the wrong stitch, and I spent
the rest of the time undoing all the stitches....
After the surgery, we were taken to the CICU where Gwyneth
was being monitored very closely. I have a close-up picture of her with all of her wires and
tubes, but it's a bit graphic. It was shocking to see her that way and I almost
fainted the first time the nurses let me try to change her diaper.
I stayed and slept in Gwyn's room during her week-long recovery, pumping breast milk and learning from the nurses how to give her the medications and wash her incision. Reid was able to stay in a family friend's condo in Denver so he could come to hospital every day. We had so much support from family, friends, and co-workers during this time. We appreciated everything that everyone did for us and Gwyneth!
Gwyneth's surgery was considered very successful by the
medical professionals. The VSD was closed completely with no residual leakage,
which means not only will she not need any further surgeries, her heart is 100%
healed! She came home on some medications and a small amount of oxygen, but we
were able to wean her off of everything before too long. Her post-operative care
included cleaning her incision every night and no tummy time for a while. She
couldn't be submerged in water and I used double or triple bibs to keep
her chest dry! We couldn't pick her up under her arms for the 6-8 weeks of the
post-op period.
Her latest cardiology check-up was last January and they thought she looked and sounded so good (no heart murmur at all) that her next check-up won't need to be until January 2015!
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