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!


Erika Is A Panda said...

Awesome news K!!!

My Bambino said...

Great Post.....

I found your site on stumbleupon and read a few of your other posts. Keep up the good work. I just added your RSS feed to my Google News Reader. Looking forward to reading more from you down the road!

Thanks for sharing....

Anonymous said...


I’m Romana P. and I come from Slovenia. My baby has also Netherton Syndrome he’s 9 month old. I found you while I was looking for more information about it. And I’ve seen you know a lot about this disease but there’s a difference about my boy and yours. My have this syndrome since birth however yours was affected later, if I understood right what you’ve written in your blogs. In my country our doctors aren’t informed well about this case because there are very little syndromes like this so they are constantly learning. That’s why I’d like to contact with you and inquire you about some things or maybe that you can recommend me any good advices.
Here’s my contact where you can write to me:, Or FACEBOOK (Romana Plevel)

Thank you!

I really look forward to your replay.
Romana Plevel

Nethertons said...

Hi, I just noticed your blog since I was just making one too and the name was taken :). Anyway I think it's great what you're doing. I have nethertons and am 25. I just created a blog today to try and perhaps help others. If you wanted I could link your blog to mine. Anyway, you can look at it. Its

Nethertons said...

Hi, I found your site because I just started a blog about nethertons too. I have netherton syndrome and am 25 years old. I just thought I would get up the courage and write about my experiences in hopes that it may give understanding and maybe hope to others.
My blog is

If you want I could maybe post a link to your blog in mine. What do you think?