NG Tube Adventures

First...Happy Birthday Daddy!
Today is my honey's birthday - the big 41. The celebration is sort of like my 41st in July...non-existent! Between having two little ones to deal with and John working today, it was just another day. Poor daddy! Of course the boys were very good and remembered to send daddy some balloons and cookies! They were excited to have a first birthday with their number 1 HERO!

So...big news...the tube is in!
It seems as though John and I have been talking about Tyler's eating and potential NG tube for weeks. In fact we were just talking about the number of times we've "cried wolf" with the threat of a tube. Well, the inevitable happened yesterday when a feeding tube was received by a weight-losing Tyler. Poor little guy - it was visions of NICU torture rearing it's ugly head as they shoved the tube down his nasal canal! After the tube was placed, John and I immediately saw how poorly it was taped and said, "We need extra tape because he'll pull that out in seconds!" 143 days in the NICU told us this!

So Tyler is now being fed 21 of 24 hours each day. This first week the goal is to get FULL feeds into his body - 630 cc's/daily. My concern is Tyler not taking daily bottles - I don't want him to forget how to suck and feel hungry. So we will be giving him a bottle at the beginning of his feeding "shift", after his three hour break without food. Hopefully he'll feel hungry without the drip and will take some food orally. He should immediately begin to gain considerable weight and hopefully we'll be able to incorporate more oral feedings next week.

Well, our biggest fear with the tube is Tyler pulling it out, causing daily visits to the GI office to have tube re-inserted. Well, we did have to go back into the GI's office today to get the tube re-inserted because Tyler PUKED it out today! Yes, the poor little guy had a HUGE puking episode and "woop!", out came the end of the tube, right out of his mouth. It sort of looked like that spaghetti trick where the piece of spaghetti is blown up your nose and coughed out through the nose canal and into the mouth. I HAVEN'T done this, mind you - I've only seen it on trashy TV! Ha ha! But basically both ends are showing, one out of the nose, the other end coming out of the mouth. If I weren't so concerned over the puke everywhere, it would've been quite a picture!

So Tyler is on the REAL food train now - getting all the food his little stomach can take (without puking hopefully). Even though having the tube is a pain in the rear, the benefits are enormous - one being that Tyler doesn't need to wake up at night to feed! So basically he can sleep through the night, should he choose. In fact, last night Tyler slept for 8 straight hours! Holy...that was awesome! Of course it would have been even better if John didn't have to get up three times to cancel the pump alarm and unplug the feeding tube. Yes, there IS a learning curve with our new "toy"! Well, to make matters better (for me), John also got up with Parker last night - BUT I got 6 hours of sleep night...all in row! That RARELY happens and was sooooo appreciated! zzzzz....

So tomorrow is our Pulmonology appointment and Friday our physicals and immunizations. Doctors, doctors and more doctors! Below are some pics and a little Parky news! Enjoy!
Here's the backpack that holds the feeding bag with formula and the pump. It's VERY mobile, which is good considering we have to take it with us to his doctor's appointments.

So this was yesterday's taping job - today it is taped completely back over his ear and down his neck. No pulling the tube out Lovie!

There's Park sleeping in the background - what a good boy! So Parker quit eating the other day - perfect, right? The GI suspects he's plugged up from the high cal specialty formula so we ('we' as in John - ha ha) gave him a suppository and are putting Mirolax in his food. He is still not eating regularly and yesterday I took him into the doctor because there was dried blood in his ear. The Ped said it wasn't an ear infection and that the blood was probably a scratch. BUT he did take a couple of xrays and noticed that Parker was breathing a little rough. Sure enough the xray showed that Park was a little "backed up" and has a little chest cold. So we are going to give him Magnesium Citrate to fully uncork his back up and started Albuterol breathing treatments with a nebulizer. Good grief! All we need is MORE medicines and treatments to juggle - smile! But overall the little snuggle-saurus is fabulous!