Feeding tube or not?

Throughout the week we've been guessing and saying...he didn't gain any weight; "Kyle, you must drink more formula."  It all came down to the weigh in today at his pediatrician's office. 
We've been very frustrated with the way he's been feeding because he averages about 17-22 oz per day.  To us, that didn't seem like it will be sufficient enough to stay away from the feeding tube.  2 weeks ago, his weight was 10 lbs 14 oz.  We needed him to at least be over 11 lbs.  Carrying him felt like he was getting lighter.  Feeding him formula, he will constantly get distracted and maybe play with it. 

So we go in and the weighing begins.  Before he is put on the scale, the wife and I started to just blurt some numbers out.  Funny thing was that we both blurted out numbers over 11.  11lbs 2 oz and 11 lbs 6 oz.  So the weighing begins and weight was 11lbs 6 oz.  Exactly the date of his birthday.  Pediatrician comes in and goes, I want him to go on the feeding tube.  It is best for him because the last month when he was weighed, he was 10 lbs 12 oz.  Pediatrician says that he isn't growing as rapidly as he should and this is the most crucial point in development.  So the pediatrician asks us, what the liver team at Mt. Sinai say?  Since my wife was not there last time, I said the following "feeding tube will need to be inserted if he is not thriving."  Then I go, 2 weeks ago he weight 10 lbs 14 oz at the liver clinic.  Pediatrician looks at me and told me to repeat the weight again and how long ago...I repeat "10 lbs 14 oz".  She counts and determines how much of a weight gain he had in 2 weeks and that's at least half a pound.  So the pediatrican goes..."they might give him a chance."  Which is better than what she originally said.  So finally we ended the visit with the pediatrician saying something like this.  Kyle looks remarkable and alert.  His stomach feels soft, she can't feel his liver as the liver at one point was enlarged and he is not jaundiced anymore.  We will report his weight on Tuesday and we'll still keep our fingers crossed...but at least one hurdle passed.

another milestone...Kyle playing in his saucer

No more pregestimil...

What a way to start off a weekend!!! I got a voice mail today - Kyle is NO LONGER REQUIRED to be on his special formula! How amazing is that! Doctor feels that because his bilirubin has been going down he no longer needs the special formula ...aka pregestimil...aka that-stinky-thing. No more spending massive amount of money on just a can...but go figure when I got that voice mail 5 minutes later the insurance calls and tells me that insurance can cover the special formula. HELLO! where were they like a few months back???? So we're going to finish off what we have left of his formula at home before going back to regular one. The only thing is we have to still feed him 30 calories ounces until further notice. (does anyone know if similiac powder still has the recall? ) Hopefully we get a great reading on his weight tomorrow at the doctors so he will not need a feeding tube (we'll update tomorrow after his appointment).


Just hangin' out with his sister's pillow pet



we wake up to this smile every morning

Eat, Eat, Eat!!!!

One more week for little Kyle to gain some weight. He's been doing pretty well with the 30 calories, in fact yesterday he started on drinking more than his usual daily intake. Hope that's a good sign and he continues with eating more and more and gains weight! Kyle has been more vocal then before lately, he loves to chat with his sister. It's too cute when they're playing together. He also started rolling all over the place.

Lately, we've been battling with the stupid medicine company! argh! It's so frustrating. Not once have I got a correct answer and each time I talk to a rep they give me different information from what the other reps has told me. Bottom line...why am I paying for insurance to have to pay for medicine?



Kyle at 6 months 3 weeks old



30 Calories ...

Kyle had his 2 weeks followup -- no luck on the weight gain. He hasn't even tipped the 11lbs mark. Kyle is only 10lbs 15ozs! Our main focus is now his nutrition. He got pushed to 30 calories for his formula. Doc said solids are a snack - poor booboo is not going to like it as he loves his solids! We have two weeks for him to gain weight or we'll have to do a feeding tube. So do not want that! Anyone has suggestions on how to fatten up our little man?

Good news is his bilirubin dropped! YAY! It's 1.6 over 1 (1 being the direct!!! )

sitting on his own waiting for the doctor to see him

Happy 6 Months ...

How time flies! Can't believe our little tiger boy is 6 months old today! He may be a little underweight but that doesn't stop him from developing skills like normal 6 months old. He's very close to sitting on his for a good amount of period. He's responding to his name and he laughs so loud now, especially when his sister plays with him. He started on oatmeal yesterday, so far he's loving it maybe more than rice cereal. He's drinking just about the same amount of formula. I hope he's gaining weight! Going to start him on solids tomorrow! That's going to be so much fun! Next Friday is his followup at the liver outpatient clinic! Hoping that his numbers are good and he's gaining weight!

no itchy, no scratchy

Weight: 11lbs 5 ozs –  had all his gear all diapers and bib included – LOL! - so that's totally a cheat weight

We had an appointment today with the Mt Sinai allergy team for the hives that developed during his last admission ... (it was referred by docs that think he's allergic to something!). Since he was on Benadryl while he was admitted, they couldn’t test to see what he was allergic to until today or if was allergic to anything because of the hives he had. The doctors were nice – asked A LOT of questions that I was thankful that his Auntie Kimmie was there too to help us answer them. I couldn’t stay the whole time – Kimmie told me he was pricked 5 times! My brave boy didn’t cry much! It did seem like a VERY long appointment, but not going to blame them as they are doing their job. End result was what we want to hear, he isn’t allergic to penicillin - so it's probably from fighting the infection that he had! The best part of my little boy’s day was seeing his Auntie Kimmie. Never seen such a big smile on him the moment he saw her! So cute!

And this past weekend was the first time we took Kyle out of the house – not like he went far and all out…he just went to grandmas, that is better than staying at home!