This post is particularly special because Neil and I met Lydia and her parents in the hospital after Mylah's second surgery. Britney and I have stayed in contact and kept close after meeting. It's been fun to watch eachother's children grow and to have become fast friends. Lydia and Mylah also share the same miracle working Heart surgeon - Dr. Ciccolo.
We are blessed to know this wonderful family!
Here is sweet Lydia's story:
My baby girl Lydia came into this world with quite a scare! It was only one short
hour from when my water broke to her arrival. Things progressed too quickly for
the doctor or an anesthesiologist to arrive. This left me with the nurse working to
deliver my baby. When the cord was wrapped too tightly around her neck, the nurse
had to reach in and clamp off the cord while my husband Jaren assisted to cut it
all while she was still trapped inside the birth canal! Finally, she emerged and was
totally blue and lifeless. This bad delivery would ironically, turn out to be the first
of many miracles we experienced with our Lydia leading us to the discovery of her
heart condition.
hour from when my water broke to her arrival. Things progressed too quickly for
the doctor or an anesthesiologist to arrive. This left me with the nurse working to
deliver my baby. When the cord was wrapped too tightly around her neck, the nurse
had to reach in and clamp off the cord while my husband Jaren assisted to cut it
all while she was still trapped inside the birth canal! Finally, she emerged and was
totally blue and lifeless. This bad delivery would ironically, turn out to be the first
of many miracles we experienced with our Lydia leading us to the discovery of her
heart condition.
The nurses tried for several minutes to get her breathing. It seemed like forever,
but those few minutes of dread turned to joy when Lydia began to cry. She was all
blue from the delivery, so the neonatal doctor came and checked her. After being
checked, we were told everything was good and that she was just blue from bruising
with a fast delivery. Jaren wasn’t satisfied and kept asking about her coloring, and
everyone said again, the neonatal doc passed her off and it’s just bruising. Our next
miracle came after my husband held her all night and observed her coloring as it
would slightly change then return. He felt it was an oxygen issue and insisted that
the Pediatrician take her to test her oxygen. Sure enough there was a problem with
Lydia only having 81% oxygen. She was admitted to the NICU 15 min. later.
From there they discovered she had pulmonary hypertension, and her heart
condition wasn’t found until after the third echo. Even then the doctors said
they almost missed it. She has TAPVR to the Coronary Sinus or Total Anomaly
Pulmonary Venous Return to the Coronary Sinus. This means that the four veins
that should hook to her left Atrium were hooked to the coronary sinus and pumping
deoxygenated blood through her heart. The only thing that was sustaining her was
a tiny hole in her septum that baby’s hearts have in utero that hadn't closed yet.
This allowed the blood to shunt over and mix with enough oxygen to help her get
by. Eventually, this hole in the septum of her atrial wall would close leaving her in
an emergency situation that creates problems like permanent damage, or death,
as all deoxygenated blood would be pumping throughout. The surgeon said she
is a miracle and that her heart problem usually goes undetected until there is an
obstruction or major problems with the baby! In fact he told us that she's the second
baby he's had that got pre-diagnosed before there was an obstruction, or before the
baby got really sick. Her heart defect is extremely hard to catch because the heart
compensates helping the baby get by. The veins are very tiny and posterior and hard
to see on the echo, and when you listen to the heart it doesn't manifest a murmur!
We can now thank my traumatic delivery for bringing it to the surface, yet another
miracle!!
condition wasn’t found until after the third echo. Even then the doctors said
they almost missed it. She has TAPVR to the Coronary Sinus or Total Anomaly
Pulmonary Venous Return to the Coronary Sinus. This means that the four veins
that should hook to her left Atrium were hooked to the coronary sinus and pumping
deoxygenated blood through her heart. The only thing that was sustaining her was
a tiny hole in her septum that baby’s hearts have in utero that hadn't closed yet.
This allowed the blood to shunt over and mix with enough oxygen to help her get
by. Eventually, this hole in the septum of her atrial wall would close leaving her in
an emergency situation that creates problems like permanent damage, or death,
as all deoxygenated blood would be pumping throughout. The surgeon said she
is a miracle and that her heart problem usually goes undetected until there is an
obstruction or major problems with the baby! In fact he told us that she's the second
baby he's had that got pre-diagnosed before there was an obstruction, or before the
baby got really sick. Her heart defect is extremely hard to catch because the heart
compensates helping the baby get by. The veins are very tiny and posterior and hard
to see on the echo, and when you listen to the heart it doesn't manifest a murmur!
We can now thank my traumatic delivery for bringing it to the surface, yet another
miracle!!
The surgeon Dr. Mike Ciccolo was amazing and fixed her heart a better way than
how they used to a few years ago. Normally, all the veins would have to be clipped
and re-sewn on and as she grows and she would need multiple surgeries. Instead,
he closed the atrial hole, and created a hole through the coronary sinus to the right
atrium so that her heart can still get oxygenated blood even though her heart flow
is different from ours. With this type of surgery she shouldn't need future surgeries.
The only risk is if there is a narrowing of the veins that were the anomaly. We see
Lydia’s cardiologist every couple of months and at the last visit he said she looks so
good that she won't have to return for 6 more months. The cardiologist will follow
her throughout her life.
Later I will write a book of all the ups and downs of her in the hospital, and the
blessings we were granted, other miracles, fasting, prayers, priesthood blessings,
trials, and lessons learned while living at the hospital when you have 4 other kiddies
at home. I'm glad it's over!! Little Lydia was able to come home two weeks after her
surgery. This was so amazing. She cruised through her milestones to get checked
off, but going through it seemed like long hours and heart ache as Lydia suffered
ups and downs in the hospital. We tried our best to comfort and support our heart
warrior. Seeing my baby with her chest open and watching her heartbeat for a few
days while the swelling went down was crazy, scary and intense. We held her hand,
held the pacifier with each bedside procedure, and cried when the pain wouldn’t
subside as her chest was open and the meds were not taking. Lydia looked at me
with tears in her eyes and a tube in her mouth and moved around when she wasn’t
supposed to and it was devastating to see my infant struggle like this! My husband
and I became frustrated and scared when her scar oozed up and got bad, and re-
teaching her to eat again took a lot of patience.
I learned to pray more sincerely, love more genuinely, to trust in the Lord, and to
feel deep graditude for my blessings and for those who extended service to me when
I needed help and support. My mom and mother-in-law attended to my other four,
so I could always be at the hospital. I had friends drive my kids to and from school,
meals, gifts, flowers and more were dropped off randomly and it lifted my spirits
so much. I'm so grateful for all of these acts of kindness, the miracle of life, and the
hand our Heavenly Father has in all of this. I cherish each day with her and she is a
great joy to our whole family. May we all find time to see the miracles in our life!!
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Love Lydia’s Mother always,
Britney Jensen
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