Win or lose, live or die.

In war, you win or lose, live or die- and the difference is just an eyelash.
-Douglas MacArthur

I accidentally came across this quote after I had taken this picture of Liam.

But, I don't believe in accidents or mistakes. I believe there is a purpose for everything. While sometimes none of it makes sense, that doesn't mean there is no purpose. We just can't see it or don't understand it.

Shawn and I have finally made the decision to go ahead with the surgery for the g-tube. I think making the decision has been the hardest part and still not one I am comfortable with saying out loud. But we both know it is a war that we are fighting and the battle lines are being drawn in such a way that we are a hairsbreadth away from getting all the nutrition in Liam that he needs.

Being such a fine line away means we are still losing this battle. And while I still have a lot of fight left in me, I do not want Liam to suffer from my war.

Fun

There was a raffle on the micro preemie group that I belong to a few months back. Because I never usually enter contests, I put the raffle out of my mind and didn't think much of it. But at the last minute I decided to enter anyway and I sent off a quick email thinking I was probably too late. I guess I got in just before the deadline. And then I never thought anything of it again.

Several weeks later I received an email that looked like spam. It was simply titled 'congratulations.' For some reason, I clicked on it instead of automatically deleting it and it turned out to be a congratulatory email telling me that Liam had won the raffle!

The prize?

A Discovery Toys prize pack with age appropriate toys for my little guy!


The Zoe Rose Memorial Foundation sponsored the Discovery Toys Fundraiser. The foundation is a non-profit organization whose purpose is to help and support families of micropreemies through education, outreach, and one-on-one parent support. Kellie Toothman, a fellow micropreemie mom, organized a "Toyraiser" that would allow the foundation to receive a portion of the proceeds that would then go towards purchasing developmentally appropriate toy packages to be given to deserving micropreemie families.

The foundation will officially roll out their website (as it is still under construction in some areas) in conjunction with the Rainbow of Roses Remembrance Celebration in honor of Pregnancy and Infant Loss Awareness on October 17, 2009. They hold a candle lighting remembrance in honor of all the little lives lost. There is no cost to attend, participate, or have your angel included. Our sweet Brady and little Kyle Ann will be remembered as well as many other children who left big holes in their families hearts.

Thank you Kellie and Keira for your devotion to helping out micropreemie families and for giving my littlest guy a great package of toys!

Yet another g-tube post.

The last two weeks have brought about more conversations of the g-tube than the entire 1 1/2 years combined. Leah, one of our OT's who helps us with feedings and oral skills, has been very helpful in discussing the issues we deal with. I put her on the spot today and asked her if Liam was her boy, what would she do. After squealing, "I can't believe you are asking me that!" she answered me by dancing around the answer. She gave me the important things to look at and to go from there.

Is he getting enough nutrition?

Probably not. He really never has.

Is he still willing to eat?

Some days.

Is he still willing to drink?

Only from a syringe.

Do we want him to completely shut down all oral intake before we realize he needs a g-tube?

Absolutely not.

I could use a euphemism, but this just sucks.

Liam hasn't been doing good with his motility and eating since I put him on the generic form of erythromycin. Don't ever let anyone tell you that there isn't a difference between the two. Liam started changing back to his old self (the cycle of reflux, vomit, and refusal to eat) within 1 week of being on it. When I mentioned to Leah that the generic was thick and wasn't even the same dosage as the name brand, she said that she had heard sometimes certain medications can have a minimum requirement to make it equal to the name brand and it won't be as potent. For some people and some medications it doesn't make a difference. But for Liam, it was huge. I got back onto the name brand as soon as I could.

The problems started slow, but obvious. I noticed reflux and vomiting that I hadn't seen in a long while. It has now come to the refusal of food at times. And for the first time ever, Liam now gets emotional at times with his food. He used to only get irritated if he didn't want to eat. Now, he will get that sad puppy dog face where the corners of his mouth turn down in the biggest frown possible and he will cry. No anger, no flailing or pushing away, just tears. It's pitiful. And they start over with every bite.

The fact that having food put in his mouth is starting to sadden him and that greatly saddens me. He has to get all of his nutrition by mouth. I don't have a back up for if he decides to shut down. Breakfast was a no go this morning. He cried through the whole thing and I only got half way through the food. When his head is turned so far around that his mouth is over his shoulder, I can't get food in! And when he is that emotional over it, I feel like if I push him, it is going to just exacerbate the whole issue.

I would like to attribute all of this to the generic erythromycin. But Liam has always had feeding issues. I've just been able to work around everything to keep him gaining weight. But now that he is older he knows he has a say so in what goes on and he is starting to give me a resounding NO when it comes to his food. It's great in a weird way because he is showing his personality, his cognition of his ability to say no and his desire to have some say so in what we keep doing to his mouth. And yet, at the same time, it sucks because I no longer have the semi complacent baby who will eat even though he is doesn't really know hunger, is still full from a previous feeding and doesn't like the taste of the food.

I guess my next step is to make the call to the GI clinic and tell them we are ready. Even though I'm really not.

Though the g-tube will make it easier to get the food in when I can't do so otherwise, it will bring about new issues: reflux can become worse for quite some time after having one placed, leakage or drainage from the site, excess growth of skin at the incision, and of course, having the tube pulled out by accident.

But, in the long run, I suppose have to look at this from a different angle:

• I won't be exhausted and frustrated from trying to get him to take in enough nutrition by mouth.
• Our daily life won't have to revolve so closely around his feedings.
  
• Liam won't be ticked off at having to eat when he isn't hungry.
• Liam won't be emotionally tied to food in a negative way because of the forced feedings.
• Liam will still be able to eat orally when he wants.
  
• Liam can receive all the nutritional intake he needs for the first time ever.
• No more gagging and vomiting when I give him his supplements and meds because they will all go through the tube.

The hardest part of it all is giving in and saying we need it....and electing to put him through this surgery when he does eat. If he had come home from the NICU with one, it would have been different, but to fight so hard and so long to only feel, however small, that we have failed in some way is a difficult pill to swallow. But, I do know, that I have tried very hard and worked my butt off to keep the g-tube away.

Maybe because I have fought so hard, it's making it so very difficult to give in.