Saturday, December 6, 2008

Bumps in the Road

When we found out that I had preeclampsia and that Eli would be born prematurely, every doctor that we saw made it known that his first couple of years would have some "bumps in the road." The whole "two steps forward, one step back" philosophy. A baby born so early has so much that is underdeveloped and that takes so much time to become "normal." We know these facts, but it is still incredibly hard to deal with the bumps in the road that come up with our sweet son.

The latest "bump" has been a dramatic increase in spit-up/vomitting. We thought we had conquered this problem, because it had gotten so much better for a few weeks. But then this past week it has become increasingly bad. Today, for example, he has kept down a total of 6 ounces out of the more than 15 we have tried to feed him. He gags and vomits and we feel so terrible for him. And we worry about him, because we don't want him to become dehydrated, and we are a little scared that there is something more wrong than just "acid reflux," even though previous tests showed no problems.

We got so scared today that we were on the verge of taking him to the ER at Children's Hospital. But then we managed to get him to eat a couple ounces and keep it down, and he is sleeping peacefully now. We would have taken him to the ER, but Eli is at such high risk for respiratory infections like RSV, which could be deadly for a premie, and we just can't risk putting him in an ER at the peak of RSV season. If we can just keep him hydrated until our GI appointment on Wednesday, then we'll stay away from the ER. On Wednesday we'll pick the doctor's brain until she is sick of us, making sure that what we are dealing with is just a bad case of reflux, feeding aversion due to prematurity, and slow growth due to a high metabolism. We'll ask for tests to confirm this, and we'll ask for a plan of action to move forward from here. Do we continue what we're doing and just allow him to grow at his own slow pace, or do we take more drastic action with something like a feeding tube to help him grow more quickly? All of this we'll find out on Wednesday, and we are very eager for this appointment! We just need to keep Eli hydrated until then.

This has been an incredibly difficult time for me. I feel so worn down by all of this. Every feeding is a battle because Eli does not like to eat (due to all the tubes down his throat while he was in the NICU). Every feeding results in several ounces of spit-up on the carpet, on his clothes, on me. Every feeding must be repeated so that he gets enough in him to stay hydrated. And I feed him every two hours. On top of all this, I feel this huge pressure to make him grow. He is tiny- only 12 pounds at 7 months of age. Most doctors are unconcerned because he is growing steadily, if slowly, and is alert, bright, and very active. But one doctor in particular is very concerned and keeps threatening a barage of tests, feeding tubes, etc. if we can't get him to gain weight. I feel like I have 100 pounds on my shoulders, carrying around this weight and burden that I can never put down. I can't relax. I can't rest. My heart is worn out and heavy, and I don't know how to escape from this pressure.

I want to ask for prayer for our son. Please pray that he will be able to eat well and keep it all down. Please pray that he will gain weight quickly. And please pray for his worn out mommy, that I will be able to relax and trust the Lord and have the strength and patience to continue with this feeding/reflux battle.

In the grand scheme of things, what we are dealing with is nothing. We know people who have lost their children. We have seen infants in the hospital with terrible, fatal diseases. I am in no way comparing what we are dealing with to any of these situations. I will clean up spit-up until the day I die if it means that Eli is here with us. But I need to stop pretending that I am super-woman, that this is not taking an emotional and physical toll on me, because the reality is that I am so worn down by this. I love that God cares about all of our problems, from the very biggest to the very least.

And, for a dose of thankfulness, I have the greatest husband in the world. I called him in tears on Friday morning and he left work immediately to come home and help me care for Eli and my sisters' two kids, who were with me that day. He is a rock for me, strong and patient and free of worry. He trusts in the Lord and never wavers. He cares for me and encourages me and sacrifices all of himself to love me and Eli. I could not be more thankful. Eric is the best husband in the world- God's perfect provision for me.

And I have Eli! Aside from feeding times, he is the happiest, brightest, most active little thing you've ever seen. He "talks" and laughs non-stop, and he is a constant source of joy to my heart. I wish you could all meet him, because he is truly a joy. And he's not sick! In no way does he act or look sick. He just spits up a lot, but his countenance is somehow unaffected by this! :) He is a joy to our hearts, and I wouldn't trade him for anything in the world.

But still. Please pray for us! Love to you all.