Friday, December 17, 2010

Bambino Turned 3

I haven't updated this site in a long time and I feel the need to go back to blogging because through this site, I have met a lot of wonderful families who are going through similar experiences as ours.

So to start off, I'm posting a photo from the Little One's 3rd birthday.

So much to write about, I don't know where to start!

Monday, August 24, 2009

One Pound Gained!

I remember a number of instances when I was asked by other Mommies how much my tiny baby weighed and, for almost half a year, my reply never changed. It was always "almost 17 lbs." For the longest time, I've waited impatiently for my Bambino to cross that 17 pound mark.

Never happened.

His weight always fluctuated between 16lb5oz to 16lb15oz. He would gain a few pounds only to lose more than what he gained after a bad break out. I remember crossing my fingers, praying, every time he gets weighed at the doctor's office but we never got to see that elusive "17" figure on the scale.

Then exactly a week ago, 9 days after his g-tube placement surgery, he weighed in at a little more than 18lbs!

Yes, 18!

We were ecstatic, of course. We never got to see him at 17, but it was a lot better.

I have been giving him more formula than what the doctor recommended, topping him off with Splash after a feeding - something the doctor shook his head about. Our dietitian said I was getting greedy, and the doctor said I should just be patient. But I thought, as long as as he is not throwing up and his tummy is taking it just fine then I would really like for him to catch up on his weight gain.

In addition to weight gain, he's also been sleeping relatively better. He still wakes up itching in the middle of the night and we are still dependent on Hydroxizine to manage the itch, but relatively better all around.

Everyone who sees him says his skin looks better, too. His speech therapist noticed that he looked plumper.

I've been feeding him round the clock every three hours, three ounces of Ele-Care each feeding. And then I try to give him Splash by mouth in between. At the end of the day, I also would feed him by tube whatever Splash left (I'd hate to throw out that expensive stuff), so he has been getting 32 ounces of formula a day. At 30 calories per ounce, he is getting 960 cals/day. Double the doctor recommended intake of 480 cals. (Personally, I thik 480 is too low for any desired weight gain, but what do I know?)

The breakouts still come and go, but they are not THAT bad. And they typically go away after a couple of days. The doctor attributes this to the fact that he is being fed hypoallergenic food exclusively. Because of this, he wanted us to comtinue doing what we are doing for another 3 weeks. Meaning, no solid food. He suspects that most of Bambino's outbreaks are triggered by allergens that we still are not aware of. Bambino doesn't seem to mind, though. What he throws a fit over is not being able to nurse from me. He remembers it from time to time and he would look at me like he felt betrayed.

All in all, the two weeks following the surgery has been really good. Skin was clearer, sleep was better - even his disposition has been sunnier. Now, all we have to do is plump up the little piglet some more!

Monday, August 17, 2009

Things Are Looking Up

It's 10:30 AM and Bambino is still asleep - for almost 12 hours now. Straight! I couldn't believe it! Sure, he whined & squirmed and cried a bit while I fed him through the tube last night, but then he settled down and went back to sleep. And this is the second night he has been sleeping so well! I am SO thrilled, considering we had the worst night ever just two nights ago when he just screamed and cried for practically 10 hours straight. Hubby and I were catatonic the morning after. And then that following night, Bambino slept from midnight to 8am - the longest time he slept, ever!

It's amazing how it could turn from worst to great in 24 hours, but I am not complaining. I am hoping, hoping, hoping that this is a turning point for him. For us.

On Monday, three days after his surgery, his skin was so clear like I've never seen before. I was too excited that I rushed him to the mall for a studio sitting - something I've always wanted to do but couldn't because there would always be flare ups and rashes somewhere in his face, arms, legs... But Monday was the best. He was also in his best disposition. He would smile for the camera like he never did before. He never paused to scratch or threw a tantrum or got irritated - it was one of the best days.

Here's a photo to prove it:

Isn't he adorable? I'm holding out on the rest of the pictures because it's intended to be a "2nd birthday" announcement for family. I just couldn't resist posting this one!

We had two clear days then he broke out into rashes again on Wednesday. It wasn't so bad but he itched a lot and didn't sleep very well. But now, this. And the best part: our Dietitian weighed him on Thursday, exactly 1 week after his surgery, and it appears that he gained 10 ounces.

I am ecstatic!

We go back to Dr. E today for follow up. We will find out if he will allow Bambino to start eating something else other than formula. We're hoping he can start eating pasta and rice, his favorites, again.

Right now, Bambino is trying to engage me in a game of hide & seek.

Sunday, August 9, 2009

The G-Tube Surgery

The surgery was scheduled August 6, Thursday at 7:30 AM, but the entire process actually started that midnight before, when Bambino was supposed to start fasting six hours before the surgery. I didn't realize when I nursed him on Wednesday night that it was going to be the last time I'll ever breastfeed him. It makes me teary eyed even just writing about it now. At 1am, Hubby took him "away from me" because he usually starts rooting at around that time. We all got up at 5:30 to get ready. It wasn't easy keeping him occupied so he won't think about hunger pangs and eating.

We spent the first hour at the hospital with paperwork and listening to more instructions from the nurses. They briefed us on what was to come and what to expect, although that was probably the third or fourth time I was hearing about all those from different sources - from the doctors to therapists and nurses. That and my own researches and readings, I believe I was already well versed on the subject. We also handed over all the medications that he was currently taking.

At 7:30, Bambino was given Versed which we called the "happy pill." We were told that it's a mild amnestic and relaxant which they give to kids for separation anxieties when they are whisked away for procedures. They said we should expect Bambino to act "silly" in a little bit, like a drunk. True enough after a while, his eyes became droopy and he was smiling and making happy noises. When the medical staff came to take him away to prepare him for surgery, he smiled his drowsy smile and waved enthusiastically at us - something that will NEVER happen under normal circumstances.

At 8 am, our GI doctor, Dr. E arrived and gave us similar briefing. We also met with the surgical nurse who will be assisting him, and the Anaesthesiologist, who will be with them throughout the entire procedure. I have exhausted all my questions, but they each had to brief us for the nth time, and ask us if we had questions for them. We were told that the procedure should take an hour or less.

I went to the hospital chapel and prayed.

Dr. E came out about 45 minutes after and reported that everything went well. He showed us pictures of Bambino's insides taken by an oral endoscope. All appeared normal, he said, except for one photo of his esophageal muscles, which had ridges that could possibly indicate allergic inflammation. He took some samples for biopsy.

Afterwards, we were led to the recovery room to see Bambino. He was half asleep, groggy and crying. He wouldn't settle down. Effect of the anesthesia and the pain pill, Demerol. One hour after, we settled into our hospital room. Dr. E gave strict instructions: he was to eat nothing by mouth or by his brand new tube for about 12 hours to allow his manhandled stomach appropriate time to heal.

miserable after the procedure

It wasn't easy denying him even water. He would wake up hungry and parched and I can't do anything about it. The afternoon was tolerable because he slept most of the time and I even allowed myself a little shut eye as well. That night, he cried until he fell asleep from exhaustion but he would wake up almost every hour. At 2am after having read all the available books to him, I turned off all the lights and pulled up the blinds so we can see the moon and I told him stories about the moon. He must have been mesmerized by the sight of the moon from his hospital bed and he quieted down and went to sleep.

The nurses started giving him EleCare (a hypoallergenic, high calorie formula similar to Neocate) by the G-tube sometime after 2am. Dr. E came by to see him first thing in the morning and was pleased to see that the wound was healing nicely. The nurse rotated it and cleaned the area earlier that morning. He OKd a drink of Splash and water but nothing else. We discussed feeding plans and home care. We were going to do bolus feeding (using a syringe as opposed to the continuous-feeding machine we were currently using in the hospital.)

Just before we checked out of the hospital, Dr. E called with esophageal biopsy result. He confirmed that the inflammations are indeed allergic reactions. Because of this, he wants to put Bambino on a strict hypoallergenic formula diet for at least two weeks. That means he can only take Neocate, EleCare, Splash and Nutra. That means he will not be allowed at the dinner table during meal time.

wagon ride around the pediatric unit

After another lecture and actual feeding demo from the nurse, and after exploiting the hospital nursing pump one last time to relieve the tightening of my breasts due to lactation, we were all set to go home. Bambino didn't seem to be in any kind of pain at all. There was no need to give him Tylenol. He was happily prancing around the house and played with the dog as soon as we got home.

day after coming home from the hospital, riding on his own "wagon"

He is such a super trouper!

Wednesday, August 5, 2009

Surgery Tomorrow

Bambino will have the surgery to place the gastronomy tube tomorrow.

Monday, July 27, 2009

Golden $plash!

On Friday marked a little milestone that thrilled this hopeful mother. Bambino learned to sip from a straw without any aid. Consequently, this newly acquired skill made him a little more interested in his formula.He likes the novelty of the straw.

The past week, EO28 Splash is all he would drink. Like Neocate, it is nutritionally complete, hypo-allergenic and it's calorie dense at 30 cal per ounce. Unlike Neocate, it is ready to drink so it's convenient - no measuring and mixing. It is also mucho expensivo. We've been giving him samples from our Nutritionist and the doctors' offices and we are almost running out so I scrambled to go online to see where they can be purchased. My husband always goes to Amazon first and we were floored to find out that it costs $14.55 plus $11 S&H for an 8oz pack! With insurance refusing to cover it, there's no way we can afford $25 per 8 ounce.

Fortunately, it sells for a lot, lot less at the Nutricia online store at $115 for a box of 27, plus Hubby found a $25 discount coupon online bringing the cost down to about $3.33 per 8oz pack. Huge relief! And we are just as ecstatic that he is eating a lot more than his 3oz average daily intake of Neocate.

On the G-tube front, we are still awaiting the result on that one test the GI doc ordered, the result of which will aid us in our decision whether or not to place him on feeding tube.

Wednesday, July 15, 2009

The Weaning Plan

It has been an eventful couple of weeks. Bambino had a back to back break out, with only a day respite in between. His bowel movement is just now normalizing after a couple of weeks on MiraLax. He was given Align in conjunction with MiraLax but i'm finding it very tricky to have him take it since it doesn't dissolve in liquid.

Two weeks ago, we saw another GI doctor for a second opinion on the GI feeding. He put Bambino on Megace, a synthetic hormone (progesterone) which is usually given to patients suffering from Anorexia and AIDS. Under normal circumstances, I would never allow my baby to take those kinds of stuff, especially since its safety and efficacy has never been tested on children. But I guess we've passed "normal" now, and i'm willing to try anything before we have to drill a hole through his stomach.

But Bambino, fortunately, seems to have an aversion to anything that might harm his body. He reacted negatively to Megace. He hated the medicine; he gagged when we gave it to him. It also made him restless. He woke up in fits during the night. And it really didn't improve his appetite anyway.

We called the doctor after a couple of days to let him know that we were taking the baby off it. Incidentally, our Dietitian and Feeding Therapists both think that Megace doesn't really do anything good to most babies. Our primary GI doctor told us yesterday that he doesn't believe in it. There's just too many side effects, he said.

Yesterday, we went back to Dr. E, our GI doctor. We found out Bambino lost another precious ounce. So, we talked about the details on placing him on the G-tube. He explained the procedure to us. He answered all our questions. He knew that we are reluctant to put Bambino through that kind of surgery. Towards the end of our consultation, I asked him again if this is the only option left for us. He reiterated that the primary goal is to put Bambino exclusively on Neocate or Elecare to find out if he has been reacting to breastmilk and whatever solids we are feeding him, and to have him take more formula rather than breastmilk. And so, we could try to wean him off the breast, which we did before but without result.

We agreed to do give it one last shot and we will have to wean him cold turkey. It means I will have to "disappear" for a couple of days. It probably means letting him starve for a while but we're hoping he will take the bottle when the milk truck (that's me) is out of sight. It will ruin our weekend plans but we gotta do what we gotta do. If this doesn't work, we will have to schedule surgery by next week.

I'm praying it will work because the last option is not entirely attractive.

P.S. I'm feeling melancholic about the thought that these could be the last few days I'm going to nurse my Bambino. That's one less thing he will need me for :(