Wednesday, April 8, 2015


Confession: I can't do this. I need prayer.
Reality: The Lord meets us where we are, lifts up our eyes to the hills, and provides all we need.

It's late. But for me it's early. Pulling a night shift tonight until we get kinks worked out in a nursing schedule. This could be a weekly thing, so please pray we'd have energy and alertness. So thankful for a husband who can balance work, time at home with kiddos, and help with this crazy schedule by getting up super early or pulling night shifts. So thankful for him and all he does.

I'm on the verge of tears. I'm tired and worn. Not just sleepy tired, but heavy heart tired. Ok, so maybe a little sleepy tired too. I might have dozed off this afternoon while rocking a baby girl. Thankful my nurse was right there incase Chloe needed something! I long for the days when Chloe is older, officially off her vent, running, and yet, hoping to soak up this baby-sized time as well. Those coming days are not so far out of our reach. She's almost one!! I look back and can't believe how we ever survived over five months in the we ever endured each long day and each restless night in a bed that wasn't ours, in a house that wasn't ours, on a street we didn't know, in a town that was unfamiliar.

But we did. And we continue to press on.

Chloe's rocking it, as usual. She went over 11 hours >>> ELEVEN!!! <<< off her ventilator today!! She's doing this! Goal is 12 hours off by heart surgery in May/June, but this little stinker, who tends to pop herself off her vent these days as if to plead for HME time, is already at 11 hours off.

She's over 16 pounds. This chunk of love has dimples on her fingers and feet. It's awesome. We never thought our preemie 3lb 7oz sweetheart would ever have to deal with stink neck or stink rolls because of baby chubs, but here we are, loving every single roll on her little body and soaking up the fact that she's finally on growth charts and sprouting up a storm.

But alas, it's been a hard and long few weeks. We're so grateful for winter to be behind us and are enjoying this beautiful springtime weather. We're swinging outside and cuddling. We're going to the zoo. We're going on walks and we're snuggling in the breeze on home made quilts outside in the shade and green grass.

But the days are still long and to be honest, we could really use prayer.

For the last 3 weeks, Chloe's been restless when trying to fill her diaper. When she bears down, she coughs, spits up or actually vomits, and then is pretty unhappy for a good twenty minutes or more, breaking a sweat and then being exhausted. Nearly every episode requires bedding change, wipe down with wet wipes too cool her down, etc. Her doctors think there's a blockage, so we're trying a stool softener to help her, but are having trouble getting the dose right. One day she needs half a dose, the next it's too much, the next she only needs a little bit... We've tried every other day and it's not enough, and every day is too much. It's a delicate little dance she's having us do to help her poo. I rhymed there. It's late. Just smile and read on...

So here we are, day 18ish of Miralax baby. The days she's doing ok, she's amazing-rolling and playing, smiling and cuddling, working on sitting up, rolling herself to her belly, doing PT, even SMILING at us during her trach changes and trach cares-she's reaching so many milestones, and also is sleeping majority of the night and is off her vent majority of the day. But the days her belly is messed up...she sleeps. She's restless. She has fits of coughing and bearing down till she's red and we're venting her belly every 15min until she's calmer (aka burping her). And it's all we can do to help her to settle in for a good nap after those episodes.

We ask for prayer. It's making the days long and the days she's off-kilter, we're discouraged. She's so close to doing so amazing and really taking off on these milestones, but it's 3 steps forward, two steps back each week. Please pray that her belly would settle and that soon her system would be regular again and she'd be happy baby every day again. Please also pray that these lovely blow-out diapers would be handled carefully to continue to protect her one kidney from any UTI's.

This coming Monday she'll see her ophthalmologist again for one year check up on her eyes. Please pray that we'd be able to help her from continuing to get so many clogged tear ducts in her right eye.

We'll also see her home vent team (primary doctor) and hopefully we can figure out this belly stuff so she can settle into just growing and thriving again. Please also continue to pray for safe travels to and from appointments.

And ultimately, we need prayers for her healing, our hearts for peace and trust in the Lord's will. She'll be having her heart cath at the end of the month, just days after she celebrates her first birthday, to check pressures in heart and lungs in prep for heart surgery about a month out from cath. I find myself praying for her often, asking the Lord to sustain her and continue to heal her this side of Heaven. We understand with a full heart that there's no healing for her-for any of us-this side of Heaven, but we're asking the Creator to heal her as much as He wills, and are praying for successful procedures and surgeries in the coming days.

As a mama, my heart is so torn. It is scared to hand our precious child off to a surgery team. Especially after her episode during her shunt placement surgery last August. But on the other hand, we're choosing to focus on the Lord, on His provisions, on His will for her life, and the fact that over and over again, God's Word reminds us to not fear.

That the waters will not overtake us, and the fire will not burn us.

We're praying that He will continue to give our hearts peace instead of anxiety,
strength instead of worry,
trust instead of fear.

Please help pray us through these coming days and weeks.


  1. Praying...thanks for the details. It's helpful to understand. HUGS!