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.

Trust with in the journey.

When Kyle Ann passed away, I was thrown on a journey that was undeniably life altering. The path I had been walking along had been closed off abruptly. I could no longer live my life and travel down the road I had been going down. The trail was blocked. I had to stumble around and find my way around the barrier in order to get back to some semblance of my previous journey. I had gotten injured on the trail when I tried to go around. And after struggling for a while, I found that I had made it to a path that would take me where I wanted to go. The sun was shining and I was feeling good about my travels again. The path was a bit harder yet still easy enough that I could look up to see in front of me.

I started to heal and see a bright future down my path. I could envision love, peace and joy again. But, then a storm brewed, a tempest like no other, that caused me to lose my view entirely. Brady and Liam were born way too soon. I couldn't see the path before me due to the storm. The darkness enveloped my trail. I couldn't see my way around and I couldn't see to go back. I became stuck. Then the rain turned my dirt path to mud. As I stood there, unmoving, I became one with the mud. It brought me down and held me tightly. And I allowed it to do so. I was not going to move off my path. The fear of the unknown and the darkness around me kept me secured to my place.

As I stood in my spot, not seeking shelter or help, I was whipped and beaten by the debris from the storm. I was not only frightened, I was injured.

When the storm finally cleared and I could see the broken and damaged remains of my path, it became too much for me to comprehend. My journey was over. I couldn't go on. How could I find my way through all of the mess? The road was no longer easy. The journey was no longer a walk. I would have to plod through the thick disarray. But how could I do so when I was injured so greatly? How could I trudge on when I had so much muck to slog through.

Slowly I began to move about the trail and look for a way back. But there was no way that I could see for me to go on. I could not do it alone. I cried out to God to show me the way and to help me get back to the trail I had been on. But He wouldn't show me that way again. He had covered over and hidden my old trail. He began to highlight a new path for me instead. One that was narrower than my previous one. It was not going to be an easy journey for this trail had twists and turns, with weeds and branches blocking the path. I knew it was going to be difficult, but also knew that this was the path the Lord had chosen for me. I could rest assured that this was the journey that pleased Him, no matter how hard it was going to be for me to do.

I am still going down the difficult road. I am going slow on this journey because I still have hard work ahead. I am nowhere near the person I used to be when I was on the easy road. The harder road has shown me more things than I ever thought possible. I am still afraid for I can not see as clearly anymore what lies beyond the bend, but I have had to put all of my trust in the One who does know.

I have experienced new sensations and thoughts that would never have occurred if not for the tempest. Why does pain have to be such an integral part to our humanness? Can compassion exist without suffering? Can bravery exist without danger? Can we experience pure joy with out experiencing pain?

Before, I would not have even asked these questions, but now I can answer them.

18 months.

Liam had a check up today.

18 months.

Corrected.

If he had been born on time, he would be 17 months old.

Liam is actually almost 21 months old.

But who's counting?

What does it matter?

Does it matter when I fill out the autism questionnaire and I can't answer a single question with a yes because he isn't even developmentally along far enough to give descriptors to autism?

Does it matter that for the first time ever he has made it on the growth chart albeit still under the 5th percentile?

Does it matter that he has finally hit the 20 lb mark and he's going on two?

No. It really doesn't matter. He's still my Liam. And he is amazing.

Fighting our battles

When I posted the video of Liam rolling I mentioned that he does it on my bed. He knows when I put him on my bed what he needs to do most of the time. Sometimes he fires all of his muscles in the wrong way and will flail all over the place trying to roll. But for the most part, he is really getting the hang of flipping over. He can not do it yet on the harder surface of the floor, but I know he'll get there. He knows when he gets on the bed what he can do and it is so cute to see him get excited when I lay him down on there.

Feedings haven't been going so well though. We have trudged up and down the proverbial slippery slope and for all the strides we keep taking forward, we still keep sliding down. For a while now, Liam has been taking his 5 ounce bottles from a syringe. While it isn't ideal, it wasn't frowned upon either so I have continued to get his milk in that way. But Liam is starting to get upset at times with it, refusing to relax and drink it. He hardly ever sucks from the bottle anymore. He bites down on the nipple and won't let go of it. I have to pry his mouth apart to get it out. And if he didn't drink from the syringe, we'd have had to resort to that stupid g-tube months ago!

Also, for the first time, Liam is starting to get upset with his spoon feedings. What has always been so amazing to the therapists that know Liam was that he does eat. And we do not want him getting an oral aversion to food. If he starts refusing to eat, we have a huge problem on our hands. And we don't want it to get to that point. We will have lost the last year and a half of success and it could happen in a very short time if we aren't careful.

Feedings issues for kids with reflux, slow motility and oral aversions seem to be cyclical. The cycle can be very rough and you get everything figured out and start moving in the right direction only to have to circle back and start over again. Liam's cycle was going really well, but 3 weeks ago he was put on the generic form of Erythromycin and everything started changing for him. I am praying that he just needs to get regular again and then he'll be interested in eating once more. I do sympathize with him. How can he possibly learn to be hungry when his tummy is always so full?

While we are not at the g-tubes door, it is still always there in the back of my mind. Knowing whether we are doing the right thing is not easy in this situation. I have a hard time giving in to the idea that he needs one. I want him to succeed. Yet, getting him one will take a lot of pressure off him and me. While I'm not ready to give up the battle, I am willing to let this fight go if it is going to be what's best for Liam. My pride is going to take a big hit and my emotions will be all over the place if/when it comes to that. There's something to be said for a momma and her desire to feed and nurture her babies. And while I feel like I have done the best I can, I know there is still hope and time for now.

Causality

This would be the result of not knowing cause and effect.

Cause and effect, my love?

What cause? Playing with your thumb in your mouth and biting it.

The effect? You bite down so hard that it hurts, and you bite harder still because you are in pain and I have to pry your mouth apart with the result of broken, bleeding skin.

That is causality.

musings in my muddled mind...

Why is it so easy for us to forget God's promises? Why, when the little things are the most important, are they the hardest thing to do? Why, is it so easy to forgive ourselves and not others? Why doesn't everyone take the high road? Who said my struggles aren't as important as yours? Who said your struggles aren't as important as mine? Why are some people so much better at hearing God than I am? Why don't I listen better? Why don't we seek the truth at all costs?

If I can never circumvent God's plan, can I live my life without abandon?

Why not try it.

While no one will doubt that nutrition is an integral part of keeping the body healthy and running at optimal levels, there is always arguments about what, if anything, is necessary to help aid children with certain disorders improve function through their nutrition.

Everyone seems to be more familiar these days with the dietary changes that have been put on the table as an option to help children with PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified), autism, and Aspergers.

I have a friend who told me that there is no way her daughter would be functioning at the level she is today if it weren't for the change in her diet. And I think everyone has seen Jenny McCarthy talk about how she got her son back after she made drastic changes in his diet.

When you think about how autism and the spectrum of disorders affect kids brains, it would be hard to imagine that something like a change in diet could make all the difference in the world for them. But, it does. And due to that proof from friends and seeing the research being done, it prompted me to seek out additional information regarding the nutritional needs for Liam.

I had been giving Liam a few supplements that I had heard would be good for kids like Liam. But, I had a lot of details that I wasn't sure on. What brands are best, which ones are more pure, how much, how often? And when I ask Dr. Kid (the pediatrician) I wouldn't get anything more than a "Sure, that wouldn't hurt." response. These pediatrician just aren't specialized in this area to be of very much help.

After seeing a post on the CP support group I am on, I decided to check out a nutritionist and see what she had to say. And as I figured she would, she had quite a lot to say about the way things are going for Liam right now.

She said the brain is 60-70% fat and you have to have good solid structure for the brain to function properly. Then she described the brain in the visual terms of a house. You have to have a solid foundation, good beams and paint. She said there were specific things Liam was needing and not getting. Part of the problem is that the brain lays down it's fatty deposits during the last trimester. And we all know Liam didn't get that. Some kids are able to lay down those fats all on their own and some kids can't. There is no rhyme or reason as to why but it seems that maybe Liam has not been able to do such a good job all by himself. And in order to boost things for him and get him going, she thought a few things added to his diet are in order.

Nothing she put him on is dangerous, it's all fatty acids and vitamins for now. She said she specifically wanted him on pure DHA (double the normal dose), pure vitamin E (most vitamin E's are missing several of the components), and phospholine (which I had previously had Liam on). And then she changed out his Duocal to something called UltraCare for Kids. She said the Duocal is nothing but empty calories and it isn't a good option. It doesn't serve any purpose other than to add a few minor calories. The UltraCare is in powdered form too so it can be put in all his bottles and foods. It is predigested rice and it has been bathed in nutrients making it a no brainer when it comes to choosing Duocal verses UltraCare.

I have slowly been adding the supplements in this week and hope to be up to full dosing next week. After about 2 months, we'll talk to the nutritionist again and see how things have gone.

And I hope they will go really well!

Why not try it?

Just going to wax philosophical today.

The Road Not Taken

by Robert Frost

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I--
I took the one less traveled by,
And that has made all the difference.