Almost there...

I'm afraid to even write this because I don't want to jinx it: we could be going home tomorrow or Friday. Emily has been taking all of her feeds through bottle for almost 48 hours now. She has just a few more to go. They even took her feeding tube out today. Atta girl!

Pray for our girl tonight! I'm optimistic that she'll make it. She's a strong little thing, holding her head up, looking all around with her big blue eyes. She's come a long ways and is as tough as they come (well, unless she's gassy. Then she's a little dramatic).

If how you've fared in your first two weeks of life is any indication of your future, Emily Ann, then it's a big one.

I can't wait to say PEACE OUT, NICU!

Consistency and progress

If you ever find yourself in the NICU, you need to know one thing: the nurses run this joint. On Saturday, our nurse Lindsay made some things HAPPEN. That day we got an entirely new team of doctors for both cardiology and the NICU which really means we started over at square one. Ugh. Lindsay overheard some conversations we had with these teams, pushed for all these different teams of doctors to meet together daily, and hinted that she'd get the social worker involved if they didn't pull their act together. Now we have one visit of rounds instead of three. Fifteen doctors shuffle in to our tiny room and talk ALL AT ONCE about Emily. Before, I was passing messages between the teams and felt like I was the only one on top of Emily's plan. Now, I actually feel like they're steering the ship. Lindsay, seriously. You saved us.

Last Friday, we found out that Emily also has a significant leaky valve, which is not associated with her heart defect. It may or may not get fixed at her open heart surgery. If it's able to be managed, it sounds like they prefer to wait until kids are fully grown before considering surgery. Ok, now have we found all the heart anomalies?

Over the weekend, I wrote two blog posts and didn't publish them because they were not exactly uplifting. The NICU is tough, people. The doctors start to trickle in around 8 and don't stop until late afternoon. This makes catching up on sleep a joke. Last night the nurse didn't wake me for her 3:30 bottle, so I got to sleep for 4.5 hours straight. I wanted to hug her. I can tell what nurses are also mothers. They understand the grind of waking every 3 hours around the clock to bottle and pump.

Things have been looking more positive the past day or so. Emily is on two doses of lasix a day, and the benefits are showing up - she is finishing more bottles! Yesterday 65% of her total daily intake was by bottle. Our ticket out of here is two straight days with no tube feeding. She's gotta do it all.

Tomorrow marks two weeks in the NICU. Whew. I keep telling myself we won't be here forever even though sometimes it feels like we'll never get home.

In the meantime, Jared and I have been belly laughing a lot at the stupidest things. Maybe it's because of your prayers. Or maybe it's because he threw out his back and took a couple painkillers.

Yeah. Might be that.

The long haul

It's not looking like they'll release us anytime soon. I've accepted this fact by asking my mom to bring me actual bath towels and more yoga pants. I set a personal record: I wore the same pair for 4 days in a row. Yup.

Emily has slowed down markedly. In the last 24 hours, she has taken 6 feeds solely through the feeding tube because she's too tired to take a bottle or nurse. She lost weight because the amount of calories she was burning while feeding was more than her intake. The doctors say these babies usually start off stronger because their lungs haven't been weighed down too much yet from the extra blood circulating there. But, now we're starting to see the effects of her heart defect through her laboring to feed and her overall lethargy. They also detected a heart murmur yesterday and ordered an echo for tomorrow. It's another sign that her heart is working too hard. It seems likely this weekend she will start taking a diuretic, which will thin the blood and make everything easier on her.

I'm finding a balance between listening to the doctors and advocating for my kid. On Tuesday, I just flat out advocated. I knew she was tired. I pushed to get OT in to start teaching her how to take bottles. I'm glad I did because she feeds much more efficiently from a bottle than nursing. I'm also pretty sure I offended one of the doctors, but it's funny how manners don't matter when you know what's best for your child. As in, don't mess with me. Give my girl a bottle. Stat. I was right, by the way... (smug, much?).

I see other parents shuffling through the NICU periodically. Yesterday, I talked to a dad whose girl was born at 22 weeks. Yeah. I know. He was nothing short of thankful for the care she's received.

Funny how quickly you're humbled when you talk to someone whose road has been much longer and harder than your own. You try to look at your stack of bath towels from home with appreciation instead of annoyance. You also try to remember to change your pants every day. Because really. Let's keep it together...

Mommin' ain't easy

Well. The craziness of this past week has just delayed the part we knew was coming: watching Emily for signs of heart fatigue and gauging when she may need the initial surgery. She is nursing for about 10 minutes at a time but then gets pretty tuckered out. Our main goal is to get her feeding and gaining weight. We may need to start her on some meds to ease the strain on her heart, but the doctors want to watch her a bit before jumping into that decision. The next step after medication would be clamping off her pulmonary vein to slow the flow of blood to her lungs, easing the strain on her heart.

As much as I want to just fully nurse Emily, the cardiologist reminded me this morning that it's unrealistic to expect that. I knew a few months ago it was very likely Emily would need a combination of nursing with taking bottles of my milk, but fortified, to give her a caloric boost and to ease her fatigue. Bottle feeding is less work for babies. I loved nursing Oliver and nursing Emily has brought me out of a dark place, so this is hard. It's one of those times as a parent where you're trying to set aside what you want so badly for your child to see what it is they actually need. The practical side of me is whispering: so she'll take a few bottles of your milk a day. Big deal...

I cannot put into words how much I miss Oliver. Last night I had an awful dream where I kept losing him in a crowd. Ugh. I know he's in good hands, having the time of his life with Grandpa Wes. Those two are a riot together. I want to take care of Oliver and Emily at the same time, but it's not possible right now, and nothing explains being separated from your child and it's out of your control.

Clearly the theme of today's post is mom guilt. Sheesh.

Oh - we're in a boarding room with Emily! Easily the happiest day since we've been here. Last night I fell asleep watching her in her bassinet and so much felt right. Being near my girl and being able to hold her is easing the stress of all this. Jared said the scariest part of last week was watching me slip into a dark depression. I know what he's talking about. Nothing alleviated my desire to hold her, to see her open her eyes, to hear her cry, to listen to those cute newborn sounds.

No, mommin' ain't easy. And all the women in Cub Foods at 9pm for the third time in a week, or those staring at a pregnancy test wondering why it's so hard to just get two blue lines, or those browsing Pinterest feeling like a failure because their kid had chicken nuggets for dinner instead of this gluten-free-tofurkey-keto-something-or-other meal they just pinned but know they will never ever make, raised their hands in agreement and shouted, "amen, sister!"

Have you heard the good news?

Easter is my favorite holiday. It's because Jesus isn't some guy in a painting or immortalized in a story - he is alive. He's here. He came back. He fought back hell for us. He conquered sin. He took the punishment that was due us and gave us what he deserved. He gave us forgiveness and a promise of a relationship with him.

The good news of the gospel is that Jesus did this for every single one of us. In the words of probably my favorite preacher ever, "we are more sinful than we could ever imagine, but more loved than we ever dared hope." -Tim Keller

We got the MRI results back, and the good news for us is that Emily has "probable" mild to moderate brain damage. This means that she may have a little trouble with things like speech, memory, or gross motor skills. But, the neurologist emphasized to me that the "probable" part of it was actually great news: it's not definitive, he kept saying. In other words, she may not have any lasting damage. The neurologist showed me her scans, other photos of the brain, yada yada, but the gist of it is that she does not have major damage.

This, my friends, is great news.

Hey, the way I look at it is this: we're none of us perfect. And Easter reminds me of just that very truth. We're not perfect. But love and grace and time can change a lot of things. It can change our hearts to know God. Those things can also change little Emily's brain so that it recovers and grows, and whatever challenges she may have will be faced with love and confidence and no fear. Because you'll be just fine, baby girl. You'll be just fine. No matter what.

Your prayers have meant the world. I have often been too tired or my brain too fuzzy to say prayers that have made much sense. And maybe that's the point, anyways. It's not about pretty words. It's about our heart.