Blessings

When we were in Manila last December, Dr. Crisostomo, the endocrinologist, suggested that we also see a geneticist. She named Dr. Eva Cutiongco-De la Paz as one of the best in town. Unfortunately we were caught by the holiday frenzy and Dr. Cutiongco ended her clinics for the year and will resume in January. Mier and I decided that Cerise and I will just once again go to Manila in January for the check up with Dr. Cutiongco. At the same time, we can have a follow up check up with Dr. Crisostomo.

I made arrangements to make an appointment with Dr. Cutiongco while still in Cagayan de Oro to make sure that we will be able to see her while we were in Manila. At the same time, I planned to have Cerise's urine metabolic screening, chromosomal analysis, hearing test and thyroid blood test all done also in Asian Hospital then visit Dr. Crisostomo again with results.

The visit with Dr. Cutiongco went very well. She was very nice and warm. Days before our appointment, I wrote a summary of what Cerise went through and emailed it to our pedia in Manila, Dr. Eileen Alikpala-Cuajunco, who in turn sent it to Dr. Cutiongco. By this. Dr. Cutiongco would have a background of Cerise's issues before we saw her.

After physically checking Cerise and inquiring about familial background, Dr. Cutiongco suspected Velo Cardio Facial Syndrome. Manifestations of this syndrome are congenital heart disease, failure to thrive and nasal regurgitation. But this syndrome is also characterized by a cleft palate which Cerise doesn't have. The doctor wanted a pedia ENT to check for velo pharyngeal insufficiency. The pedia ENT she referred to didn't have clinic the next day and for the rest of the week. My problem was looking for an ENT before we leave for Cagayan de Oro. Dr. Cutiongco said that if the ENT confirms velo pharyngeal insufficiency then she will require the chromosomal analysis.

On our way home that evening several things were bothering me:
1. finding a pedia ENT who can check Cerise the next day
2. getting her cleared for velo pharyngeal insufficiency.
3. her thyroid blood test and getting the results in time for the endocrinologist's clinic hours
4. her hearing test
5. collecting 30ml urine for her urine metabolic screening

I was considering staying a few more days just to finish it all. I was so tired and most of all, I miss Mier and the girls in Cagayan de Oro. I didn't want to have to go back to Manila without them again. I prayed that everything will just go on smoothly.

The next day, we were up early for the thyroid blood test. We were at the nuclear section by 8am as soon as it opened. They told us that results would be out by 6pm that day. We told them we were willing to pay extra to expedite the results because Dr. Crisostomo's clinic was from 11am to 1pm in a different hospital. They told us that we can go on ahead to the other hospital and they will just call the doctor for the results. We agreed.

Then the blessings started to unfold:
#1 Cerise fell asleep right away for her hearing test and we didn't have problems at all when we were doing it. The best news is that her hearing is normal!

#2 We found an ENT right away. He wasn't a pedia but he handles babies and children and was familiar with what Dr. Cutiongco was looking for. Also, we were first in line in his clinic.

#3 Cerise was cleared for velo pharyngeal insufficiency! No need for the chromosomal analysis!

#4 Before leaving for the doctor's clinic at the other hospital, we checked the lab for results of the thyroid test. Lo and behold, it would be ready in 15 minutes! We would be able to take it with us.

#5 Cerise's thyroid test is normal already! Praise God!

#6 We were able to collect 30ml of urine from Cerise in less than an hour for her urine metabolic screening. We were able to submit it right away to the hospital.

#7 Cerise was drinking approximately 20 ounces of milk already and was gaining weight. As of her last check up, she is now 4 kilos, 300 grams heavier from 10 days ago. :-)

Everything was just falling into place and results were starting to normalize. Dr. Cutiongco said that if Cerise continued to fail to thrive then she will have to require the chromosomal analysis. (I told her that although I like her a lot, I pray that I do not have to see her because of Cerise.)

So far, everything seems to be okay already. We are still waiting for results of her urine metabolic screening and a thyroid blood test again a month from now. I am hoping and praying that these would be normal.

Cerise is still small for her age (She is now four months old but weighs like a one month old) but as long as she is gaining weight well then she will be able to catch up soon.

Cerise at 4 months, looking healthy and pretty

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---

Cerise at 4 months

Cerise at 4 months --- a little small for her age but gaining weight nevertheless. Thank you Tita Ovvian for the pretty outfit. :-)

Cerise --- 2 and a half months

Supplemental Nursing System

Sometimes I feel that we make one step forward and two steps back. Sigh. After being so excited that Cerise finally gained weight last week, I feel we're back to square one. The medicine that the pedia-cardio gave to relieve the pressure from the lungs is a diuretic. Meaning, Cerise will be urinating more often and consequently may lose weight. Since she is peeing more often, this is suppose to make her want to feed more also. But as it is, she takes the same amount of milk and maybe even less now. Sigh again.

I bought her these Breast Flow bottles that's suppose to mimic the breast. It has two nipples that regulates the flow of the milk. Only when baby sucks can the milk come out. At first, she readily took to it and was taking enough milk in a day. I think she gained weight already when she started taking this bottle. Then all of a sudden, out of the blue, she just rejected it. No warning, no symptoms. Just no bottle. I tried the Evenflo bottles. I tried Avent. I even went back to the Pigeon bottles that she used to drink from with breastmilk. Still no progress.

I was able to feed her with a sippy spout that Alyssa used to take when she was an older baby. The spout is closed and liquid will only flow when sucked. The beauty of this is that the baby is able to regulate her milk intake. Cerise took to that and can drink in it but only in small amounts. She refuses to drink more than half an ounce in that cup. Frustrating, really!

I'd like to monitor the quantity of her milk intake so I can see how much she's drinking in a day. For her age, infants usually take in 3-4 ounces in a 4-5 hour period. That's about 20-24 ounces a day. I checked the Dr. Sears book and it says that 2-2 1/2 ounces per pound is a better way of quantifying a baby's milk intake. Since Cerise is 3.5kg, she should be taking 15 to 20 ounces a day. As it is, she barely reaches 10 ounces although we can't really quantify the breastmilk she gets from direct breastfeeding.

Then I thought of researching about the Supplemental Nursing System of Medela. I wasn't sure if this would help but I was thinking since Cerise preferred feeding directly from me, this would enable her to get more milk without jeopardizing also my breastmilk production. Good friend, Jen Tan of Next9 slings was able to hook me up with Medela Moms and I was finally able to get this:

This works by attaching a tube (connected to supplemented milk) right beside your nipple to allow baby to suck on the breast while getting milk. This is usually used by adopting mothers who wish to breastfeed. It is a good way to relactate and to feed preemies or slow weight gaining babies. I thought this would be perfect for Cerise! Good thing Medela Moms has this in stock!

I tried using it tonight. Not easy! It takes practice for you to shoot the tube into the baby's mouth. Cerise was getting frustrated at first. But we were able to manage and she was able to take in one ounce of milk. I tried using the medium tube at first but will try the bigger tube tomorrow for faster milk intake. I hope that this would enable Cerise to take in more milk so she'll gain already.

We'll be seeing a pedia-endocrinologist when we go to Manila. Cerise's pedia here in CDO recommends it. My friend, Dr. Zeka Tatad-To also suggested the same thing and mentioned that most failure to thrive babies is an endocrinological problem. I hope that we finally find out why Cerise is not gaining weight so we can address it right away.

However, amidst all the trials she is facing, Cerise remains to be an alert and active baby. She loves looking at her play gym friends and talks to anyone who would listen to her, usually mommy or her sisters. :-) I hope that she'll be ok soon for her sake and for my sanity.

Small Steps

Cerise had her 2D Echo yesterday. The holes in her heart (PDA, 2 VSD's and 1 PFO) are still there but have reduced in size already. Praise God! I also weighed her in the pedia's office and she has gained another 100 grams. I am so relieved! 100 grams in 2 days! Things are looking brighter for her and I am so happy! I know that things will be better soon.

The pedia-cardio said that the condition of her heart is not bad enough to be the reason for her failure to thrive. Honestly, I think it is all a combination of problems in her health that caused it. Her heart, anemia and the sepsis. She was given an additional medicine to help relieve the pressure from her lungs which consequently can help her gain more. Slowly, these problems are being addressed and I think Cerise is on her way to recovery. :-)

Hopeful

It has been quite a hectic week and a roller coaster of emotions for us. Cerise went to see her pediatrician again last week to assess her growth and if she has improved with the steps that we have undertaken. It was disheartening to find out that again she did not gain weight. Her weight two weeks ago was the same as last week! How can that be? It was so frustrating. I could feel the pain in my heart boring a deep hole. I've sacrificed and worked hard in helping her gain and yet it was all in vain.

Her doctor suggested to supplement my breastmilk with formula. If he asked me that a month or a week ago, I might have said no and let me work on her weight gain through breastmilk. But right then and there I felt that I needed to give her formula too. I wanted her to gain weight so badly already before it's too late, before I regret it, before something happens that might be detrimental to her health.

He also recommended that Cerise be checked by a pedia-gastroenterologist when we go to Manila. And since we'd be going to Manila on the 18th pa, Mier and I decided that Cerise and I should fly off for a few days to have Cerise checked immediately. We were able to get in touch with a pedia-gastro from St. Luke's Hospital and bought tickets right away.

Thank God the pedia-gastro cleared Cerise from liver and abdominal problems. She said that she believes that this isn't a metabolic problem and that Cerise expends too much energy breastfeeding. She suggested that I quantify her milk intake by pumping milk and giving it to her through a bottle. Cerise should be taking 8oz of milk aside from breastfeeding.

Honestly, I don't think I can pump 8oz of milk everyday. Although I do have stored milk at home, this won't be enough and it would be a struggle for me to reach that goal. Pumping takes time. As it is, I am taking too much time with Cerise already. I need to be able to bond with the other girls too. Thus, with a heavy heart, I've decided to continue to mix feeding. My goal is for Cerise to gain weight as soon as possible and if formula is the key for that then it is so. I tried my best and did what I could.

I went to have Cerise checked again yesterday, this time by a pedia-cardiologist. It was great to find out that Cerise finally gained! 100 grams. Not much but something. I am hopeful that things will get better soon. We are scheduled for a 2D Echo tomorrow and I pray that I will hear good news.

I forgot to mention, on our way home from Manila, Cerise was crying in the plane. She refused to feed either from the breast or the bottle and I was feeling really down. But when I looked out of the window, there was a rainbow among the clouds. Not a full one, just half a rainbow and I wasn't sure if it was visible only to me. But I felt God's presence and his assurance that all will be well. I am hopeful.