Update on Cerise

I haven't been able to update this blog with what's been happening to Cerise since my last post. It was a very hectic Christmas holiday in Manila filled with hospital visits, doctor's appointment and laboratory tests. When we arrived on December 18, we left that afternoon in the middle of Brendan's party to see an endocrinologist at Asian Hospital. I found Dr. Virginia Crisostomo's name in the hospital's website and since she was the only one available on that day, I decided to go see her already. Good thing too because she's a very good doctor --- very thorough, just as I needed.

Cerise’s weight went down to 3.2kg already because of the Aldactone given by the pedia cardio. She was thin and looked really sick by this time. It actually frightened me to see her. Dr. Crisostomo asked for a work up done:

1.      abdominal ultrasound
2.      urine metabolic screening c/o PGH
3.      chromosoamal analysis c/o PGH
4.      urinalysis with emphasis on ph and specific gravity
5.      FT3, FT4, TSH
6.      Na, K, Cl, ionized calcium
7.      RBS
8.      ammonia

The Genetics Lab in PGH was closed for the holidays and was to resume in January. I called up Dr Lumicao (pedia-cardio in Cagayan de Oro) and asked if we can stop giving the Aldactone as Cerise was obviously losing much more weight with it. She agreed and mentioned to continue observing and monitoring Cerise’s breathing and feeding patterns.

Dr. Crisostomo also advised us to see Dr. Portia Monreal, pedia gastroenterologist at Aisan Hospital.

That Monday, December 20, we had Cerise's abdominal ultrasound done. Conclusion: Normal liver, gallbladder, spleen, kidneys and urinary bladder. Obscured pancreas and pelvic organs by overlying gas. Praise God!

We also went to see Dr. Monreal at Asian Hospital. She said that usually babies with cardiac problems have also weight gain problems because of the stress in sucking. She encouraged to breastfeed more instead of giving formula and suggested to cup feed or dropper feed Cerise. She also suggested to try to obtain Human Milk Fortifier (available only in the US) to add calories to the breast milk.

Dr. Monreal prescribed Clusivol Multivitamins – 0.3cc, Iron (Ferlin) – 0.3cc and Vitamin C (Celeen) – 0.3cc to be given twice a day. She also added Folic Acid (0.2cc) and Zinc (0.5cc) to be given once a day. She suggested SGOT and SGPT tests.

The next day, more blood tests were at the Perpetual Help University prior to seeing Dr. Crisostomo during her clinic hours. Although many of the results were not within normal range, Dr. Crisostomo said that this could be due to her weight loss. What bothered her was the thyroid results. FT3 was low, FT4 was low and TSH was high. This indicated hypothyroidism. She ordered a thyroid ultrasound and nuclear scan to be done.

The ultrasound and nuclear scan showed a smaller than normal thyroid gland. Dr. Crisostomo prescribed (Thyrax) L-thyroxine (12.5 mcg in paper tablets) to be dissolved in 2ml sterile water to be given daily in the morning on an empty stomach.

At this time, I was feeding Cerise breastmilk by bottle given by my sister and stopped formula for the meantime. Cerise would take in approximately 10 ounces a day plus direct breastfeeding. On our next doctor's visit, Cerise weighed 3.3kgs, a gain of 100 grams.

When we finished the breastmilk, I was afraid to go back to NAN HW knowing that Cerise would reject it. Upon consultation with Dr. Romblon, our pedia in Cagayan de Oro, we change her milk to Isomil, a soy based milk. Surprisingly, she liked it and started taking in more milk.

During our pedia check up last January 3, Cerise showed that she gained 300 grams in 5 days! She was 3.7 kilos already! I was thrilled and so relieved. At this time she was taking 14-16 ounces of milk a day and would occasionally breastfeed. :-)

Cerise, 3 months, on Christmas Eve looking so small and fragile.

---to be continued---