Home Free.... or not....

I thought everything would be fine when we got home... I thought all would magically get better... I couldn't have been more wrong.

Don't get me wrong, I LOVE being home and having my baby and my family all under one roof... it's been a lil over 3 months since we come home from the NICU and it hasn't been all fun and games and easy peasy like I envisioned it.

I thought... I'm gonna get him home and he's just gonna take right off with his feedings and I'll get to pull that yucky tube and he's gonna be just fine!

Well, he is just fine... for the most part but I haven't been able to pull that yucky tube... and its not all fun and games. Everyday is a struggle... but a struggle I would do 10-fold for my baby boy.

Upon arriving home we had to find a pediatrician in addition to our family practioner to oversee Greyson's tube feeding & weight gain. We also had a visiting nurse for 3 times a week for the first few weeks to monitor his weight and make sure I was capable of managing his ng tube.

For those of you who don't know... an NG feeding tube is a tube that goes in his nose, down his throat, and into his stomach. His formula is delivered through this tube. In order to place it, I have to measure it out from ear to his nose and then down to wear his belly should be. Then I insert it through his nose to the proper measurement and then I have to check it. Which requires listening with my stethescope as I try to get a risidual (suck stomach contents back up through the tube with a syringe) or push in a lil air followed by a lil fluid to make sure its in his belly and not in his lungs. At the hospital and when we first came home we would hang a 60 cc syringe and fill it and let gravity send the feed through the tube to his belly and this is the way most people do ng feedings.... however our lil guy did not tolerate it well and we ended up finding that drawing his formula into a syringe using the plunger and then SLOWLY and ever so GENTLY using the plunger to push the formula through the tube is the best method for him. He gets less air and he keeps more of his feeds down this way than the other way.

As I metioned before he was only taking about 30% of his feeds by mouth due to oral aversion. After almost a month at home he stopped oral feeds all together when he got a nasty upper respiratory infection and he has never resumed. While he has a severe case of oral aversion.. his isn't as bad as it could be. He will put his fingers in his mouth and go to town sucking on them... he will put toys in his mouth and allow me to put my fingers in his mouth... occassionally he will take a pacifier but as soon as you put a nipple in his mouth and any fluid comes out of it he will gag and throw up. As I said... it could be worse... some babies you can't put anything near their lips without them gagging... others can't even look at a bottle or a breast without gagging.

After a few months it became clear that he would need to have a g-tube placed... which means instead of his food going through a tube in his nose, they would surgically make a hole above his tummy and the tube would go directly in there. Prolonged NG feeding can damage the airway and isn't near as effective in delivering the volume he needs to gain weight and grow.

The first few months were horrible trying to keep food in him and get him to gain weight... everytime we'd bump up his daily volume he'd vomit even more of it out. But like I said... we found the less air he gets the better chance he has of keeping his food in. He also does better if he is asleep!

In November, the day before our 3rd wedding anniversary, we had an appointment with High Risk & the Gastro team in Iowa City. High Risk said he was developing nicely... on the small side... wasn't laughing yet like they would like and of course not feeding like they would like but otherwise doing everything he's supposed to be doing for his age. Gastro made an appointment to place his g-tube and sent us to xray for an upper gi study to make sure the anatomy was correct and their wouldn't be any surprises.

SURPRISE.... the next day we get a phone call from his gastro doctor telling us that the gi study showed that Mr. Greyson's belly is not where it should be. She said his belly sits alot higher and is partially hidden behind a few ribs and lays flat instead of hanging in a j.... which would be why he throws up soooo much! She said that they would be moving the surgery to the OR and have a surgery team on stand by in case they can't get it to drop down when they inflate it with air. If that's the case then the surgery team will step in and surgically place his stomach by sewing it to his abdomen... he was supposed to have surgery Dec 12th, 2012... but he developed another respiratory infection so it was postponed... we have another surgery date of Jan 23, 2013.

On one hand... I can't wait til he gets it because he will also be going on a pump. As it is now... because of how his belly is placed we have to feed him very small amounts frequently.

I get up anywhere from 4:30-5am and start pushing a lil food 30-40cc's over a 8-10 min period every 20 minutes or so to get about 100cc's in him before he wakes up anywhere from 5:30-6:30am...
In between getting the kids up and ready for school I'm pushing 5-10cc's at a time every 15 min or so. If he's awake, every few feedings he throws up... when he goes to sleep is when I hit him hard. Over the past few months I've managed to expand his stomach with these feedings that he takes while he's asleep.. so he only throws up a few times a day now instead of 100... this makes it impossible to go anywhere. I do household chores and homework in between pushing feeds. Hell... as I type I am pushing feeds! When we do have to go somewhere it throws us off completely. We rarely get our daily target volume in him but boy do we try. Here lately its gotten better and we reach our goal more often than before... but its no life for either of us. When he gets the gtube and goes on the pump, the bulk of his feedings will be delivered over a 10 hour period at night while he (hopefully) sleeps.

 When I'm not pushing feeds, doing homework or housework, or tending to the other 3 kids... I work with him... we work on all our development skills- sitting, playing, tummy time, standing, etc. I also work with him on his oral aversion. Of course, Iowa City says I should offer him a bottle at every feeding.. 1st of all... his feedings run together... so there is no "every feeding"... second of all they also told me to make sure feeding time is pleasant and a happy time and as soon as he gags or starts to cry- stop. Well... everytime I stick a bottle in his mouth he gags and cries... soooooooo therefor I only try a bottle every other day and once a day. I always did it with formula and recently switched to to sugar water- he likes the sugar water better and doesn't usually gag as soon as the fluid hits his tongue- like formula but as soon as enough fluid builds up in his mouth and he has to swallow he gags. But I encourage him to suck on his thumb... I try to replace his thumb with a pacifier at least once a day- usually doesn't go over well. I give him toys and encourage him to put them in his mouth & yes, I let him suck on my fingers and I often feel his gums and his tongue as long as he tolerates it. I've done a lil bit of research and am putting together tools to help in oral aversion... one being an electric toothbrush.... so far he can only tolerate the stimulation briefly but its still something!

In reality... we will be struggling with this for some time to come... My son may never take a bottle... The only thing we can do is hope maybe he will take a sippy cup or a regular cup. However it may be some time & lots of work before he takes fluids by mouth... our other hope is that if he doesn't take fluids by mouth that at the very least he'll take solid foods by mouth. I'm not sure who or when exactly but I'm under the impression that in addition to the pump, we will be getting either a speech or an occupational therapist to work with us shortly after the gtube surgery. Between therapy and growing up and seeing us eat and drink... we are hopeful he will someday eat regularly. He likes a full belly... he gets mad and cranky and will suck on his fingers fiercely when he is hungry... so that's a good thing and means everything works properly... he just has this mental block when it comes to anything oral & that's something we can work with!

So this is our journey... my husband is ever the optomist... he thinks that the ng tube is 90% of Greyson's problem and as soon as it comes out he is just gonna take off... I am more a realist and expect it to be a long bumpy road. I know my son... I knew my son before he even came out of me. A few weeks before Greyson was born, the hubby and I had a huge fight about opening up the baby monitor... we had everything else opened and put together but I wanted to wait on the baby monitor JUST IN CASE something went wrong and we needed to return it and spend the extra money on something like a movement sensored monitor. Well, the hubby opened it depsite my protests and told me I was over reacting and everything was going to be fine... well everything wasn't fine! Then.. I worried about his feeding while he was on the vents and the hubby was like "you're over reacting everything is gonna be fine"... well guess what... mother's intuition is not a force to be reckoned with! Honey, if you're reading this... trust me as the mother of your child.... and trust my gut feelings and instincts!!!!!

I definitely have mixed feelings about the g-tube surgery.... on one hand I will be soooo happy to get him on a pump- it will make things much easier on me and him... not that I wouldn't do this for the rest of my life if I had to... I would do anything for my son, I would do anything for any of my children. But its frustrating. Then there is the whole fear of the surgery itself... I'm gonna bawl like a baby when they take him away from me. Then there is the healing process... my bubba boo is gonna be ouchie for awhile. Then there is the whole developmental process that could be delayed while he heals from the surgery. Then there is the whole slew of complications that come with that.. but we're as ready as we can be. My husband says he can't wait to see him everyday without the tube in his nose... I say I've gotten so used to the tube being there I don't know how I'll feel without it there. I certainly don't like changing and placing it every week but I think it gives him character and makes him all the more cuter!!