This blog post is part of a series that I began for telling our story. You can read the first post here.

From this point forward, I’m going to be sharing the text of posts as they were written at the time. Some will come from this blog; others, from our CaringBridge site. I may from time to time write my own reflections after re-reading, but mostly I will just be sharing words as they were written. So much of this journey for me is revisiting what happened, and realizing just how difficult the journey was for us. And now, seeing how far we’ve come since that time.

As I poured out my heart to the internet in the blog post below, I was overwhelmed with gratitude for the responses I got. Even my most pro-nursing friends were super-supportive of my decision to stop breastfeeding. I was pretty much at the point of deciding to stop, but couldn’t get past feeling guilty. Thank you, friends, for your generous hearts in hearing me and giving me what I needed so desperately.

From this blog (original post can be found here), on April 29, 2011.

I discovered a few days ago that there are computers available for us to use on the 8th floor of this hospital (the PICU is on the 9th floor).  So today I came down to write and pour out some of the overflow of my heart.

For those of you who don’t know – I doubt there’s anyone reading this who doesn’t, but just to make sure – our daughter Samantha is in the hospital on life support. She got sick last week and to make a long story short, she is struggling with a bacterial infection that is in her brain. We’re learning what lots of “itis” terms mean, but basically it all boils down to inflamation. It’s terrifying. She’s seven weeks old as of yesterday, and we’re looking at (best case scenario) long term neurological problems.

I have so many emotions flooding my mind. Anger that this could happen to our tiny little girl. Anger at God, anger at myself. Guilt quickly follows – what she’s struggling with is most common in premature babies. She was delivered early because of my high blood pressure. Oh, and they think she might have picked up the bacteria from nursing since they found it in the milk I pumped. They aren’t sure about that one, but I’m dumbfounded that something we thought was good (breastfeeding) might have been the very thing to expose her to this toxin. Now, maybe it wasn’t that, maybe she passed it to me. But regardless it’s very hard for me to imagine feeling safe enough to ever nurse her again. I’m really struggling right now with that decision. Should I continue to breastfeed? First of all, how do I know for sure that it’s safe? Second, with the stress and the situation, my schedule of pumping has been less than ideal, and I know I’ve lost volume. What will it take to get it back, and do I even have the energy to try? (Please, if you are reading this and are a rabid breastfeeding advocate, refrain from comment. I am already under emotional turmoil and I don’t need anyone giving me a guilt trip. I’m giving myself enough of those these days).

I also feel guilty for not being in the room enough. I just get so tired and try to get more sleep in. Or I go someplace else to eat. I find myself hating being in the room and hating being away from it. And when I’m in her room I feel guilty for not doing enough. But I can’t pick her up and standing next to the bed gets exhausting. So then I sit and feel bad for just sitting there. I try to talk to her or sing, but it gets frustrating when we see little response from her. All I can really touch is the top of her head. And listen to the beeps of monitors. Thankfully she rarely sets off alarms on hers and when she does it’s usually due to her moving and having a probe slip out of place.

I am exhausted beyond anything I ever thought possible. Before she went into the hospital I thought I was tired. Ha! Now I’m doing less than I was at home for her and yet being more emotionally drained by all of it.

Last week I was horrified at the possibility of them doing a lumbar puncture on my little baby. Now she’s had two, and two MRI’s, and two EEG’s. Plus countless blood draws, a couple of transfusions, and more medicine than I ever imagined they could give to an infant. She’s got brain damage, seizures, and so many other things that just terrify me.

I keep wishing I could trade places with her – why isn’t it me in that hospital bed? I spent the entire pregnancy trying to release all of my fears for her life into God’s hands. I prayed for her constantly but ultimately learned to trust Him to care for her. Now I’m being asked by Him to do that again, and I haven’t been able to do it yet. I feel like I’m Abraham tying my child to the altar, sacrificing her to God. I keep begging God to show me where the ram is to spare her from this agony.

Last week was Good Friday, when my parents arrived at the hospital shortly after the first MRI which filled us with dread. I told my dad I’m tired of identifying with how Mary felt on Good Friday. I want to know how she felt on Easter. I don’t want us to be the parents who show everyone what faith is in a crisis. I want Samantha to show God’s miraculous healing hand through her recovery!

I know we don’t get to choose how God uses us. I just keep thinking about the dreams I had for her life – they weren’t anything crazy. I just wanted her to have friends, play, read, go to school, get married, have children. I don’t know what if any of those things will be available to her now. She may have slight delays developmentally. Or she may never progress beyond the state she’s in now. The doctor reminds us that her movement and reactions are all good signs. But then I’m haunted by the knowledge that this infection may not yet be under control in her brain, that things could continue to get worse instead of better.

I used to get so frustrated getting up for middle-of-the-night feedings. Now I’d give anything to rewind the clock and have that time back. It is so unfair to me that because of this infection she won’t have the life she otherwise could have. Somehow I think I could have handled it better if she had been born with the brain damage instead of it coming after. I keep thinking about the folks with developmental disabilities that I worked with in college and I wonder if she will be like some of them. Will she need life-long care? Will she ever talk or walk? All of these are questions that won’t be answered for some time, maybe years down the road.

Travis keeps reminding me that it’s ok to stop breastfeeding. It’s ok to get sleep and rest when I need to. I even feel guilty sitting here away from her to type this. He tries to remind me to have hope. I just feel the cloud of depression sinking over me. I wish she didn’t have to suffer, and I’m so afraid that after all of this is said and done she will still die.

Out of this, I can see two good things that have given me strength. The first is the amazing community of saints surrounding us. Facebook has become a prayer chain for us, and we also have a caring bridge for Samantha ( I’m overwhelmed some days by the prayer support that has come from some very unexpected places, from total strangers to broken relationships. The other thing is my husband. Ever since Samantha was born I find myself loving him in a way I never thought possible, loving him as the father God called him to be. He has been my rock through this entire ordeal, supporting me even when I am at my worst, and what’s more, holding his tongue even when I’ve spoken in frustration and anger. The two of us have always struggled with speaking our minds a bit too freely with each other (as in, we argue easily. Imagine that when we’re both first-borns). But since we’ve been here Travis has been patient with me at times when I really did not deserve it. This is the only way I know how to thank him for it.

I need to get back upstairs. We have been waiting all day for them to take out Samantha’s breathing tube but she needs to be more awake. She’s been very sleepy today and I’m trying to believe the doctors when they tell me it’s due to the sedation she had for the MRI last night, that it’s not a sign things are getting worse. Please pray for us, and especially for her. I want to believe God has a miracle in store, but I also know that His ways aren’t our ways. That’s the part that is so hard for me to take right now.

Next post coming tomorrow.