All The Wrongs Have Been Made Right

I've waited for more than 3 months to post this update as I want to give Theodore's body the adjustment it needs. So far, Theodore has produced normal stools twice already. He still poops numerous times per day but with a decrease  in volume and an improvement in appearance. Stools are no longer as water as before. 

Overall, he maintains a happy disposition. He walked exactly a month after his third and last surgery. He talks - A LOT. He can pronounce simple sentences in the Bisaya dialect. He is his own little person, and he is very expressive of his likes and dislikes. 

The only reminders of everything he has gone through are the two long scars in his tummy. Whenever he meets someone for the first time, he would raise his shirt to show off his battle scars. He has finally gained weight too. Yehey! Two days ago, he weighed in at 10.3kls, which is not bad for an 20-month old baby. 

Looking back, I can confidently say that 90% of the wrongs have been made right. 

It pains me to accept this but we have made a lot of mistakes when he was younger. I allowed myself to be stressed the whole time I was pregnant with him. Although I went to every single check-up, it wasn't enough to compensate for the emotional trauma and physical excursions of working and living in Manila. I knew I should have taken better care of my body when he was still inside. 

We made a mistake in choosing his pediatrician, who I have thanked numerous times in previous posts. She has failed to recognize all of Theodore's symptoms, and have repeatedly brushed off our concerns of his failure to gain weight and frequent illnesses. I remember my husband, Marc, recorded the times Theodore would suddenly develop fever (complete with dates, time and temperature) to show the pedia. But she just said it could be because of the environment. We used to live in a 2nd floor apartment, and in a relatively nice area in Makati. We moved to change the environment, but Theodore was still the same. 

We made a mistake when we allowed the pedia to choose Theodore's other doctors. One doctor said she couldn't find the thymus, and I cried my heart out. It was very scary for me, as a mom, to be told that your child's immuno-compromised because I know that meant a bleak future for him. 

We made a mistake when we waited too long to come home. I was afraid of letting go of my job then because it was a once-in-a-lifetime opportunity for me. I was just getting accepted as a true part of OPAPP-OSEC (although I have been there for more than a year). I have made friends and contacts, and I was finally having fun. If  I had decided to come home earlier, Theodore wouldn't have to suffer too long. 

When we found out that I was pregnant with Theodore, I must admit that I felt disappointed. I've just started a new job and it was not the right time to be pregnant. But I loved him the first time I saw him as a bleep in the monitor of the ultrasound machine. We planned his introduction to his big brother, and we even involved Kuya in all the preparations for Theodore's arrival. 

But you know, all the mistakes we made guided us along this difficult journey. They have made this triumph sweeter. We learn from our mistakes, and we are forever grateful for the people who have supported us, prayed with us, laughed and cried with us, and even stayed up late to wait for Theodore to get out of the operating room. 

It has been a long and stressful journey towards recovery, but Theodore is such a fighter. Today, you cannot even see any sign of his past when you look at him and see him smile. You cannot believe what he went through to continue to live when he talks and plays. 

Thank you for being an instrument of God's grace on Earth!

Theodore 2 weeks after his last surgery. He has forgotten all the pain, and looked completely happy. :)

Theodore: Scarred but Still Fighting

On February 2, 2015, Theodore had his first surgery. This surgical correction of the malrotation of his small intestines is long overdue since this is a congenital condition that should have been diagnosed during the many hospital visits and checkups he has had. Unfortunately, none of the seven doctors he has seen in Manila has diagnosed him correctly. Yes, they all saw the distention in his abdomen, they all saw the lab results yet no one pushed for a CT scan for better imaging. To think that they are well-paid doctors from VRP, The Medical City and Makati Med. In short, we wasted over 500,000 pesos and precious time on a wild goose chase. 

Anyway, we finally found a team of doctors who are worth the money. They diagnosed Theodore's problems and they are working on fixing it. That first surgery was to correct the malrotation and to perform a colostomy. The second, which will be in March, is to correct the Hirschsprung Disease and the third, which will be in April, is to close the colostomy.

His kidneys, which were the focus of many laboratory tests and hospitalizations in Manila, are still big and they still have nephrocalcinosis. Unfortunately, they still cannot be corrected surgically so he will be on medication indefinitely - one for the recurrent UTI and one for the calcium deposits - and will need to see the doctor every month.

As a parent, no words can describe how I felt from knowing that my baby boy will be operated on to actually holding him post-op. He had so many things attached to his little body. He had an NGT, a catheter, two IVs, a colostomy bag and a large wound on his belly. He was groggy from the anesthesia and when he woke up, he wouldn't let anyone touch him - clearly traumatized. 

The morning after the surgery. Isn't he a brave little fighter?

The first night, we (my mother and I) couldn't sleep. Theodore won't let me hold him. I guess he blamed me for his pain. He remembered me as the mother who brought him to the OR and the last person he saw before he was put to sleep. As soon as the anesthesia kicked in, I was ordered out of the OR. They started the surgery at 9:15AM and ended past 2PM.

For the first hour, I was just outside the OR, unable to move away for fear that something might happen and I had to be there. The next hour, I decided to go back to the room to force myself to eat something. Of course, I couldn't eat. I tried to take a quick nap to pass time, I couldn't sleep either. 

At around 12 noon, I was called back to the OR. I sprinted. I was excited to see him and to know that the surgery went well. I was greeted by the surgeon. He showed me pictures of what he did. So there I was, gawking at pictures of my boy laying on the operating table, intestines out and all. The surgeon, his name is Dr. Alejandro Aquino, by the way, explained that he had released the tissues that prevented Theodore's intestines from moving from Point A to Point B. He has also removed the appendix since it was just floating around and not where it should be. I have never seen an appendix before but I swear Theodore's looked like a thin earthworm wrapped around a part of an intestine. Anyway, the appendix being removed is okay with me - that's one future problem taken out of the picture. And then, Dr. Aquino said his rectal biopsy was negative. Hearing that, I breathed a sigh of relief. Negative! That's great news, right? No. What the good surgeon meant was that his rectal biospy showed the absence of certain cells that are responsible for peristalsis. So "negative" actually meant that Theodore positively has Hirschsprung Disease - another congenital problem. 

It took two days post op for Theodore to start feeding clear liquids but on the third day, he started vomiting every time he took something in. So they decided to put the NGT back and we were told not to feed him again. When his NGT output cleared, he was given milk and he drank it all without pausing. His tummy seemed to work better then than it previously did. 

Another thing about the past two weeks is that I can't remember how many times they inserted and reinserted his IV line. The doctors and nurses tagged him as a "difficult insertion" because his veins are too thin like that of a newborn. In addition, when they could find a vein, it had problems supporting the IV so they had to find another one. In one particular insertion during the wee morning of a Saturday, they couldn't find any good vein at all! Theodore had been crying for more than 30 minutes and the pressure caused his exposed intestine to have an edema and he had an intestinal prolapse. So now his colostomy looked like a big red sausage. 

All these lines went into the central line.

Back to the IV line, since they could no longer find any and an IV was vital at that stage because he could get dehydrated easily and all his meds were through IV, his attending physician and nephrologist, Dr. Michael Manalaysay, ordered for a central line. A central line is basically another surgical procedure wherein an IV line will be inserted to a major vein in the neck (one that goes directly to the heart). Since Dr. Aquino and Dr. Palabyab (anesthesiologist) were both out of town, we had to seek the services of yet another surgeon and anesthesiologist. This brings Theodore's doctors to 6, including a pedia gastro (Dr. Bangayan). 

Financially, we are drained. We have exhausted all our resources. Physically, we're beat especially our little fighter Theodore. Emotionally, well, I don't know if I can handle more bad news in the coming days. 

Right now, we have zero in the bank. We are neck-deep in debt and I am tired of thinking of ways to raise funds for the next two surgeries plus the checkups in-between. Theodore is also back to drinking Nutramigen as his milk, which is costly. One can costs close to a thousand pesos and we have to restock every two days. 

I hope and pray that God will still provide for this smiling baby. 

If he can smile despite the pain, why can't you?

Why We Didn't Celebrate Our Wedding Anniversary

Last Saturday was our 2nd-year anniversary of being legal husband and wife. But contrary to young married couples, we didn't celebrate. There was no cake, no gift and not even a single flower. Why? Because it was not included in the budget. 

Following Theodore's illnesses, we had to cut down on our expenses in order to afford his medical bills. For me, the lack of tangible gifts was acceptable. However, I was expecting something special to happen - maybe a relaxing massage, or an afternoon in the playground (because Theo was well enough to spend an afternoon outside). But none of those were realized. Instead, we spent the morning attending the Parent-Teacher Orientation at Nathan's school and in the afternoon, I was on mommy duties while he slept.

I guess the real reason for the lack of celebration was not the money. I think, we simply stopped becoming lovers. 

We have been burdened with so much lately that we forgot to act like partners. The baby got sick, Kuya got sick, the money is not enough...We had so many responsibilities to think of and neither of us was prepared. I easily got stressed because of my tendency to overthink and over-analyze things. Sometimes, a simple conversation about problems would end with me getting angry at him. Yup, not very nice of me.

Our problem is, I believe, not isolated. Others may be having this problem as well. The lack of intimacy happens especially following the birth of a child. The wife sees the husband as another set of hands to help around the house and take care of the baby. As I have always told my husband regarding the separation of our tasks: "I'm the food and you're the poop."

Now that we have two boys, there's no room for "us" time. At the end of the day, we're both so tired that we just sleep. Talking is done through text or phone call. We may live in the same house but because we're both very busy and we have different work schedules, real conversation no longer happens. 

Maybe when the children are older and no longer sickly, maybe then, we can become lovers again. Until then, we both need to hang on. But on special occasions, I think a simple gesture of love would still be very much acceptable. 

Kuya Got a Star!

While on the jeep home, I received a text message from my husband, Marc, telling me that Kuya got a star from school. Of course, I was very excited. Who wouldn't? When a student gets a star, it's most likely because he or she did well in school. Maybe a question was answered correctly or a seatwork was done perfectly. Whatever it is, it must have been done right to deserve such an honor. 

I silently cursed at the traffic because I was in a real hurry to get home. I half-ran and half-walked the short distance from where the jeepney dropped me off to our apartment. When I got home, Kuya was beaming and he was showing me his hand, where the star was stamped on. It was a bright red star (as shown in the picture below). 

"Good job, Kuya!" I said. His smile got wider. 

Then, I asked the very important question: "Why did teacher give you a star?" To which he answered "Because EVERYONE gets star!"

My I'm-a-proud-parent-because-my-kid-got-a-star smile faded. I laughed a hearty laugh instead.

Thanks for being fair, Teacher Erica!

5-Day's Worth in a Single Post

I decided to write just one post for all the crazy, fun and sweet things that took place this week as an excuse for neglecting this site. Hehehe

...so here you go:

15 June 2014

Without a doubt, Facebook has been so closely knit with our everyday living because it is the main reason why we remember events. I mean, seriously, if someone hasn't posted on FB, would you remember it's Father's Day? Perhaps 60% of you won't. That's the positive side of living in an era where technology is smart enough to remember dates we usually miss. 

But I've been thinking, were all those greetings posted actually read by their intended recipients? I doubt. Not all dads are on FB. I just hope those nice and touching messages of gratitude and respect were not just posted to show to the world that you appreciate your father. Your dad has to know about them too. 

In our family, we celebrate father's day everyday. Kuya Nathan and Baby Theo show Daddy their love with warm hugs and sloppy kisses. So thanks but no thanks, FB, we didn't need your reminder this time!

16 June 2014

It's Kuya's first day of school! 

Kuya has crossed the Rubicon! He has just started his very long journey to realize his dreams through education. Other kids (and parents) would cry on their first day of school because they fear being left alone in a new environment, but not Kuya. When I left him with his teacher, he smiled and even waved me goodbye. As soon as I got home last Monday night, I asked him what he did in school and he replied with a beam, "Eat cookies and drink juice!" (referring to his baon).

Anak, recess lang ang school? Hahaha

17 June 2014

Baby's gooey mess of a food was made richer and "fatter" with extra virgin olive oil. Following the advice of his gorgeous pedia gastro, we started adding a teaspoon of this nutrient-rich oil to his home-made food. Remember that Theo has a special diet because he was diagnosed with severe malnutrition following recurrent infections, SIBO and a malabsorption syndrome. Hence, every spoonful of food he eats must be as complete as possible. 

In addition, Theo stopped drinking from his bottle and he wouldn't take milk from the dropper either. Instead, he drank from a cup. Yes, our 6-month-old is now drinking straight from a cup. Kuya, upon seeing his baby brother, drinking milk from a cup, also stopped drinking his milk from the bottle. Talk about the younger influencing the older! Good job, boys! *proud mommy here*

(I shall upload a picture of both boys drinking milk from cups soon)

19 June 2014

I learned that Kuya is known as "tawa ng tawa" in school. I discovered this on Thursday morning when I took him to school. His classmate, upon seeing him, said, "O ayan na si Tawa ng Tawa" (Here comes the boy who keeps laughing). It would have been an innocent comment made by a child but for me, a parent who over-thinks, I couldn't help but be worried. 

Could it be that Kuya does not fully understand conversations he hears at school because they are in Tagalog; hence, he just smiles and laughs? Kuya speaks and understands only English and Bisaya. His Tagalog is almost zero. 

That simple comment hit me hard and I decided to start talking to Kuya in Tagalog. I don't want him to be known only as the boy who keeps laughing. I want him to be known for more than just that. 

And to cap this week's update, here's a picture of me and the boys saying "Good morning, World!"

'Til the next post!

The Mighty T: Mommy's Little Fighter

This is Theodore. He was born at 36 weeks, which makes him a late preterm baby. Given that, he has feeding problems, gastrointestinal worries and an immature immune system. These health issues made him a fighter and from hereon, we shall call him "Mighty T".

Mighty T fought and beat pneumonia twice; and infectious diarrhea once. He survived NICU, where he stayed for the first 24hours of his life while waiting for his respiratory rate to normalize and the fluids in his lungs to drain out. He was also diagnosed with severe malnutrition secondary to acute gastroenteritis and Small Intestinal Bacterial Overgrowth (SIBO) with malabsorption. So Mighty T is said to have "failure to thrive". But like all superheroes, he fought and continues to fight back.

Just this morning, we went on our weekly visit to the pediatric gastroenterologist. When we stepped into her clinic, she had her fingers crossed and said "I hope he gained weight!". Indeed, he did! From 4.75kls last week, he's now at 5.08kls. This excellent news means that our 6-month-old is capable of thriving. It means that he does not have some serious mechanical or metabolic illness that would require surgery or life-long treatment. This means that our baby boy only needs Mommy, Daddy, Lola, Nanny and Kuya to work together to provide him optimal care, the right nourishment and to ensure his timely intake of medicines.

However, Mighty T shows a strong disinterest in solids. Once he tastes the food, he would purse his lips and hide his face. The doctor said it's alright. Maybe he isn't ready to eat yet. She said to just give him food that he tolerates so feeding becomes pleasurable for him. Seeing how small he is, I tend to get very frustrated. I wanted him to eat more so he gains weight fast. If he gains weight, he wouldn't be so fragile and sickly anymore. But of course, he won't understand any of that yet so for now, I'll do what the doctor said. 

To somewhat counter his aversion to solids, we also tried boosting his appetite with Cell Life and Heraclene but they didn't work on him. We tried coaxing him to eat, even playing with him just so he gets interested in the food. We also tried letting him watch cooking shows on TLC - hey, anything's possible! But, yes, none worked. 

So we focused on giving him more nutrients through his milk. I'm breastfeeding so I make sure to eat the right kinds of food at all times. On top of that, the doctor recommended Nutramigen along with Spirulina.

Nutramigen is a hypoallergenic and extensively hydrolyzed infant formula designed for the effective dietary management of common feeding issues. It's pricey and it smells really bad - even Mighty T hates it. I'm all for exclusive breastfeeding but I would do ANYTHING just to help correct baby's health problems.

Spirulina, on the other hand, is composed of cyanobacteria: Arthrospira platensis and Arthrospira maxima. It is a dietary supplement and a whole food. The doctor said just two tablets of Spirulina is already equivalent to a kilo of vegetables. So I sprinkled half a tablet to Might T's processed porridge (we process his food in a blender so that he won't gag when he eats) and fed it to him. He ate about 5 or 6 spoonfuls (the small baby spoon) and he seemed to like the dark green color of his food. I asked his Nanny Joy to taste his food and she said it still takes like porridge. So it's odorless and tasteless - perfect for Theo's choosy palate. 

We seem to be getting somewhere with Spirulina so we'll keep feeding him that. Also, per advice of the doctor, we will continue to use porridge and Spirulina as his base food and from time to time, add mashed vegetable, fish flakes and tofu. For his snacks, we'll try a combination of mashed or pureed fruits with Nutramigen or my milk. Maybe I'll blend them all in before feeding him. With fingers crossed, I hope this feeding plan works!