Shunt surgery went well

Everything went great w/the surgery. We just want her to start
breathing over the ventilator so they can take it out.

Shunt surgery in 8 hours

Today's been a pretty good day. We feel like Alex is pretty well recovered from her last surgery, and just in time for her shunt to be put in at 8:30am. We've spent the day holding & feeding her, and she seems happy, so we're happy too.

Which is really good, 'cause we all need to be in high spirits for tomorrow. It is a routine procedure, but it's still neurosurgery, and we continue to ask for your prayers that it will go without complications or infection and that she will recover quickly and painlessly.

Still raining

After 2 straight days of rain, we're ready for a little sun. It seems like we've been right here before - post surgery, sensitive to every little fluctuation in our babies vitals.

Having her home with us, we learned how she communicates. When she's hungry, she does the cutest little thing with her mouth, sticking out her tongue like she scraping a film off with her teeth. When she's angry, she balls up her fists and scratches at her face & ears, usually accompanied by an attempt at crying. She opens her mouth and looks like she's about to belt out a cry but only gives a little "ehh," as if that's enough to get her point across. And it always is. No need for theatrics.

Last night she let us know how she acts when she's really in pain. I don't want to go into detail, but it was heart-wrenching to experience. Something no parent ever wants to see, especially from such an undeserving young soul. We tried everything in our arsenal to calm her, save picking her up, but nothing worked. Even moving her head to the other side made her bawl, so we were pretty limited. I'm guessing she had a splitting headache, no surprise considering the massive pressure changes it's been put through.

She's on the feeding tube, and had recently "eaten" but they let me try giving her a bottle anyway, since she was still chowing down on her pacifier. It actually worked. She took the whole thing pretty quickly, and it was one of her best bottle feedings to-date. No breathing problems at all. During and after, her eyes were getting heavy which was great - we wanted nothing more than for her to go to sleep so we could go home & do the same. But it was only a temporary relief, subsiding almost as soon as she finished the bottle (and burped). More rooting, fist-clenching and inconsolable crying. We felt every bit of her pain.

This lasted off and on for hours, finally resulting in an order of pain-relief medication for Alex. It took an eternal 10 mins or so to kick in, but finally it did and it was like a giant rock was lifted off our chests. She went right to sleep - relief for all of us.

As you read this, you may think it's not fair. This baby's been through enough - she shouldn't have to go through this. I know we certainly feel that way. But as I sit her with the rain steadily falling outside the window, I pray that I can look back on this experience as something that made us stronger. Made Alex stronger. It's cliche, but rainy days are essential for growth. And when we feel this helplessness, we go to the only one that's really in control, and lean on Him with faith that he'll get us all through this. And all of a sudden, the rock is lifted off our chests.

Although we pray for sunshine right now, I can't help but think of the lyrics to a fitting song:

Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings
You glory. And I know there'll
be days When this life brings me pain
But if that's what it takes to
praise You Jesus, bring the rain

Dreary

It's a dreary day inside and out. Alex is sleeping at the moment. Earlier today I walked into the NICU and as I got closer to her bed I heard her crying and it was the sweetest sound - the ventilator was out. It's painful to watch her silent cry when the ventilator is in. She is very hoarse sounding and her little throat is swollen from the ventilator rubbing against it for two days. The nurses tell me she will be fine. Still no signs of infection or bleeding - thank God.

Here are a few photos from today....

Better, but not great

Alex is doing better today. She's not her normal blissful self, but at least they finally took her off the ventilator today - I really hate that thing. So her throat's irritated, her skin's puffy, and she has a hose in her head - I'm sure I'd be a little upset too. But it's just part of the recovery process I guess. Not looking forward to going through it again on Monday.

Baby steps...

A New Day

Alex has been sleeping most of the morning and seems to be comfortable this afternoon. As Doctor Handler put it, she is behaving herself. We have learned to recognize the cues she gives when she's feeling pain and seeing them yesterday about broke our hearts. It's a huge relief to see her in better spirits today.

They have weaned her off the Fentanyl (pain killer she took after the surgery) and are giving her tylenol every 4 hours. Her red blood cell count is normal which means that they don't suspect any internal bleeding. This was a concern for the neurosurgeons as they felt that right after the surgery she drained a significant amount of fluid too rapidly which in some cases can cause a major headache and/or bleeding. Because of this incident, they will continue to monitor her progress, watch for infection over the weekend and postpone the shunt surgery until Monday. We'll keep you posted as things can always change based on how well she's doing.

Alex is tolerating her feedings through a tube today which is great news. One step closer. She is still on the ventilator and hopefully will be extubated tomorrow. She's struggling a little today with her heart rate dropping when lowering the rate on the ventilator but the nurses feel she just needs a little more time before removing it. That's about it for updates. Please continue to pray for a healthy and complication free recovery before her next surgery.

N&J

Thank You

I can't even begin to tell all of you who follow our journey through this blog how much your words, prayers and thoughts mean to us. Today has been especially hard for mommy and it's been encouraging to hear from so many of you. We feel so supported and lifted up in prayer and thank each of you for that. I've often struggled with opening up to people about hardship because I feel vulnerable or feel like I have to be the strong one and in turn I tend to bottle things up. But I've learned that hardship, suffering and loss can bring people together in a beautiful way. There is so much compassion and love we have felt from this community around us and I'm so grateful. Many of you have shared how our story has touched you or how our baby girl Alex has inspired you and that's the beautiful way God works when we walk through the valley. We learn and grow through adversity and faith and in the end we are stronger. Thanks to those that reminded us God is here every step of the way and that He is taking care of our little Alex. We are comforted knowing she is in His hands.

Much Love