Hope

The question of "WHY" comes up a lot lately.

I wonder how and why this all happened to us. I wonder why it has happened to the people I see all around us every day.

Some people wonder why God made or let this happen.

I don't really believe that God had anything to do with it. But I do think that He can make a lesson out of the things that have happened.

I've often said that I felt like my infertility was an answer to a prayer. I often prayed for patience because I had none. Infertility certainly taught me a little.

Well, I'm also a bit of a control freak. (What? I know- you're SHOCKED!) And I wonder if this whole thing isn't a lesson in just how little control we really have. Already, I find myself not caring nearly as much about little things I used to obsess over. I used to need things in a specific order, done a certain way. Done MY way. Now I don't care if they get done at all. Nothing is as important as being with Robbie.

Spots on my stuff used to bother me. Now I can't seem to do anything without getting my milk on something. I barely even notice.

These things used to make me feel like I had some control in my life. Now I realize I really just don't. And it's okay.

I guess I'm growing out of some of my issues.

And then there's Hope.

For so many years Hope has been my enemy. I was scared to hope to be pregnant, scared to hope to stay pregant. Scared to let myself even think about good things happening.

And now, it's all I cling to.

Sure, the fear rears it's head.

Last week when Robbie threw up bile and scared me, I was crying. It had been a couple of good days and I said out loud "I knew this was coming. Things were going too well. Something bad always comes after good things happen." The nurse said quite simply "It's okay to expect good things to happen."

At the time, I inwardly scoffed. But you know, she's right.

Of course, Hope is scary. It means you can be let down. Disappointed. Heart broken. But it's all I've got these days.

Tonight I listened as the mother of the baby next to Robbie had her baby baptised. The baby's time on this Earth is short. She was born with a trisomy. They knew she had a malformed hand before birth, but didn't know she also had a multitude of other problems that just aren't medically fixable.

Later in the evening, I tried very hard not to listen and she discussed what amounted to a living will for the baby. No heroic measures.

The baby's dad refuses to have much to do with her. He has said to "leave her in the box" referring to the isolette. I wish I could be disgusted or horrified. Mostly I just feel sad.

He's protecting himself.

And I recognized it well.

I spent so much of my pregnancy with Robbie being scared of losing him. I was afraid to connect to him trying to spare myself the grief.

When I got sick and had to face that he may not live, all I could think was how much time I wasted being scared instead of just loving him.

I've been thinking a lot about something shared with me by the dad of Robbie's NICU girlfriend. He told me that his parents had 14 children. His mom has 6 miscarriages and a baby with Down Syndrome who lived only a few months.

I guess when he'd expressed to her one time that she didn't know how she'd managed, she told him that babies are a gift from God. And when they are called home, there is nothing we can do to fight it. Our job is to love them while we have them- whether it be a few weeks or many years. That's all we can do. Love them the best we can.

It was touching when he shared it. But it seems more and more profound the more I think about it. It doesn't just apply to babies, but to everyone, really. No one knows their fate. For all my fears about Robbie's health or David's or my own, anything could happen.

So I'm trying to resolve not to fear Hope. Not to waste time that should be spent loving something or someone because in the end, it's my job to love them as best I can while I have them.

I hope the dad of that baby realizes it in time. Until then, I'll pray for them. Maybe you'll join me, too.

As for Robbie, he's hanging in there.

His poop issues have continued and I guess with my prodding, the nurse made some noise about figuring out what was going on. He had a CBC and an X-Ray today to make sure he didn't have an infection or blockage. Both were normal. His day nurse managed to get a sample sent off for a stool culture to see if it can tell them anything.

They gave him 6 hours of pedialyte today trying to settle his stomach. Then they pulled the beneprotein out of his feedings, hoping that would help. After the pedialyte, it seemed to improve a bit, but after the food it got worse again. Still not as bad as it had been, but not great, either.

Tonight they gave him straight breast milk with no additives to see if maybe that would do it. If not, they were going to go back to pedialyte again.

They're not overly concerned about it, but since it's gone on for a few days now, they want to make him feel better. I'm glad to finally have someone paying attention.

I expressed my displeasure at the doctor's upping his feeds in spite of Robbie's tummy issues. Fortunately the NP & his nurses agreed with me and were caring for him well. (In my opinion, anyway.)

He had a bad breathing morning. Apparently had a rash of As & Bs and the nurse admitted to me later that she was a little worried that he'd have to be reintubated. They put him on straight CPAP and he's had a much better day. He was cranky as all get out because he DESPISES the prongs, but his breathing was SO. MUCH. BETTER.

Tonight, they took pity on him and found him a mask that doesn't go up his nose. They'll alternate a pronged mask and this one every 4 hours. But the pronged mask that they're using now seems to annoy him less as well. He actually rested for a while tonight which was a great improvement.

So we keep our fingers crossed (hope!) that this works. He's been off the vent for nearly 8 days now. Hopefully it sticks.

Tomorrow- pictures!


--Trish