Nicia's Sweet Heart

During a casual lunch about 7 years ago, my then new daughter-in-law explained that because of her health condition and risk to her health from pregnancy, any future grandchildren would most likely be by adoption. That was fine with me, after all a grandchild is loved no matter how they come into a family. Imagine my surprise in May of 2016 to learn that I was going to be a grandmother! To be honest, I felt a cautious elation to the news. I asked a lot of questions, and threw in my full support.

When I saw the first sonogram, we coined the nickname "Peanut" because it looked like a picture of a tiny peanut.  Speaking of tiny, we knew that the baby would be a preemie.  Doctors said there was a 75% chance of baby coming at 28 weeks, and a 90% chance of birth at 26 weeks.  It was at that point that my grandma genes came into play and I started stocking up on premmie clothes and premmie baby accessories.

As the pregnancy proceeded, Mommy experienced fatigue and ups and downs with her blood pressure and blood sugar levels (she has a kidney transplant and diabetes).  My son, (Daddy) stepped up and worked harder and made himself available to drive to the numerous doctors appointments to the point of exhaustion.  The pregnancy surprised even the most seasoned of doctors, who seemed to give the worst case scenarios.  The surprise was on them!  Everytime there was a down point, little Peanut would come through shining, and things would get back on point!  We found out we were having a girl!  Daddy chose the name Nicia Malie, meaning "victorious" and "tranquil or calm" (I also found out that besides meaning tranquil or calm in Hawaiin, Malie also means "beloved") - a fitting name as it turned out.
I had an important naming task also.  What would my "grandmother name" be?  Hmmm.  After some suggestions and rejections (Granny?  Definitely not, this is not the Beverly Hillbillies!), I decided on GrandmaT.  (T is the initial to my first name).  There was an early baby shower, and friends and family literally showered the expectant parents with love and gifts. 
In the later stages of pregnancy we were told that little Kumquat (baby girl grew into different fruit and veggie stages...) had a heart defect - a hole in her tiny developing heart, one of her heart chambers was larger than the other, and obstruction existed  in her pulmonary artery.  We could expect a stay in the NICU. 

Nicia was born in December 2016 at about 4 lbs with a heart defect called TETROLOGY OF FALLOT. 

Some of you may have heard of this from the recent celebrity news. It is serious, because during a "Tet" spell, the infant experiences high heart rate, low oxygen levels, can stop breathing, and turns purple. Nicia has experienced Tet spells. We have had to call 911 on one occasion in addition to Tet spell scares. While she was in the NICU she was monitored 24/7, and eventually transported to a different hospital for a time, and finally, she was finally released to go home. Once home she was still monitored 24/7, till the stress of watching and listening to that beeping monitor caused such stress to both parents and infant that the specialists decided to reduce the use of the monitor to a couple times a day. She has not experienced any Tet spells lately, but we are all still very watchful and try to keep her calm to keep her heart rate steady. Every day without a Tet spell is a day of relief and watchfulness. Her days are guarded because she has not been able to go out to enclosed areas with lots of people, so her parents have had to alter their activities to be home the majority of their time, except Daddy going to work and when Nicia or Nickie have doctors' appointments. They have, however, been able to go on some outings, with Nicia under their watchful eyes, to the beach, the Aquarium and to the park, for example. Parents and baby girl enjoiy those times, and are now striving to make sure the happy times continue with better health.

(Napping with Daddy)

Nicia recently got the ok from the specialists to be around people (with sanitized hands, of course, and are cold-free and flu-free), so I look forward to sharing our little darling with my fellow congregants and workmates, who have all been very supportive in their thoughts, prayers and thoughtful baby gifts. 

In the kangaroo pouch with Mommy.

(This was in the hospital NICU after getting a kiss on the forehead from Daddy)

Nicia just turned 4 months old and reached the goal of 10 lbs (she is actually 11 lbs now!) in order to have enough weight to undergo surgery.  Due to some unexpected changes to her surgery plan, Nicia's surgery will more than likely take place in Columbus, Ohio, at Nationwide Children's Hospital.  Her parents (and me) live in Southern California.  Her mother is restricted from work due to her medical conditions, and has not worked for some time.  Her father will be working with basically no time off to support her medical needs, at the same time providing transportation to and from appointments (for both Nicia and Mom).  He is also putting off his own needed surgery to take care of Nicia and his wife. 

To supplement the health insurance, the family may need to pay approximately an additional $5,000 or more for the surgery. Nicia's pre-surgery prep requires 2 shots of Epogene twice a week for 4 weeks at a cost of $1,000 per shot. If the surgery goes forward in Ohio, they will need airfare to fly roundtrip to Columbus, Ohio where they may need to stay for up to one month. (Baby girl has been approved to fly). Nicia will need to stay in the NICU after her surgery for recuperation, and then for possibly several weeks for follow ups to make sure she is able to travel back to California. In the meantime, Dad will be taking time off his work for an undetermined time and needs help to support his wife and daughter.

We are asking for your help for Nicia's pre-surgery needs, actual surgery cost (beyond the insurance), travel expenses (even with Angel Fare prices, airfare for 3 persons from California to Ohio and back in the summer months is costly), and for transportation (car rental), lodging and food costs while the family is in Ohio. Even if the surgery is able to take place in California, there are still funds needed for Nicia's medical needs, as well as the survival of the family.

We thank you and appreciate any and all help you can offer.  Your efforts are blessed for this sweet gift from God named Nicia.

Please keep watching for updates on our campaign page.  This initial entry was from my perspective as GrandmaT. 

Future updates may include Daddy's perspective, Mommy's perspective, and there may even be a surprise update from little Nicia Malie!

Thank you all!
  • Anonymous 
    • $5 
    • 58 mos
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    • $500 
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  • Leslie Adams 
    • $100 
    • 59 mos
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    • $50 
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    • $100 
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Magi Taylor 
Escondido, CA