What to Expect???

This evening, as Keri visited the feminine farm for her regular game of tug-of-war, she spent some time reading "What to Expect the First Year." She made quite a novel discovery during her reading, there is absolutely NOTHING in there about this, our situation!?!?!? Can't get a chapter, section, sub-section, paragraph, not even a sentence? NOTHING? COME ON!!! Help a brother out here!

Even if there was something, I'm sure it would do no justice to everything that goes on in a situation like ours, or one that is even worse. Truth is, there are many, many difficulties and emotional lows, sometimes there are even more of these than highs. Still, 5 seconds of high negate 24 hours of low. Today was one of those days as Mayla fought tooth and nail for her food, and her escape.

Something we all (the nursing staff included) are quickly learning is this girl can eat (drink if you will). About an hour or so following each feeding, she begins gnawing on her hand like she hadn't eaten, ever. When this happens, she get feisty (by that I mean ANGRY), on the verge of spitting fire. We've had some close calls in these moments as Mayla seeks to further demonstrate her 10 year old strength in a 12 day old body. Mayla is the type who does not like to do anything, unless provoked on her own accord. Being wrapped in blankets? Forget about it, she'll kick and punch her way out in no time. Positioned nicely within her bed? Not a chance, she quickly squirms her way down to the end where she is inconveniently located for her "equipment". Breathing and feeding tubes? Right... She has been pulling on these things for days trying to get rid of them. And today, in the midst of one of her "moments", she ripped the feeding tube right out of her nose. Uh, what? Yeah, not kidding. We were not there when she did it, but I imagine her in the midst of a crying fit because she wasn't being fed and says, "ok, you aren't going to feed me, I'm not going to let you." I go on to imagine her planning her escape, likely at night when she has always been active. Truthfully, I'm proud of her; tough little stinker.

She is proving to be quite the mover and shaker, and a whole ton of fun. Words do not describe her craziness. After Keri and I prayed over her and said good-night, she began a routine of kick-boxing, kung-fu, jazz-hands, happy-feet, and break-dancing that would make any parent proud, and about fall on their faces laughing. She is absolutely adorable!

Despite the struggles early in the day, we had an amazing time with our girl and celebrated some small, needed, victories (aka, incredible blessings and answers to prayer). For example, Mayla's urine catheter was removed today, she fed entirely from the bottle (then provoking herself to puke on occasion because she drinks too fast, OR giving her a case of the hiccups which she REALLY does not like), no CPAP assistance (though she still has oxygen), continued reduction/removal of meds/fluids, furthered reduction of edema (she looks normal again and is soo cute), and the beginning's of seeing her personality.

While we have no idea how long Mayla will be in this intensive care unit, how long before she goes back to neo-natal, or what to expect out of this time of recovery, we do know that the Father continues to sustain, heal, and demonstrate His love. When we are at what seems like our most difficult or low moments, He refreshes us, gives us rest, and renews us. He continues to use people around us, and those not around us, to encourage and strengthen us. He uses small victories, blessings, and answer's to prayers to continue guiding us down this path. Sometimes we have to look closely to find these because maybe our expectations are too high, or we selfishly just want to be out of here and in our own home, other times he slams us right in the face with them. We have learned, and continue to learn, many many lessons from this experience. We are not in control; His plan is always better than ours; listen when He speaks; don't sweat the small stuff (or even the big stuff because He's got this); in the midst of darkness, His light is closer than a switch or even the clapper; it can always be worse; it's okay to be afraid so long as we do not live from this fear and we give it over to Him, any time is the right time for prayer, He's got this, and so much more. Patience is not something Keri or I have historically been good at, but through this experience, He has definitely been working on that and we are certainly growing.

Our prayer is that we continue to be open to what He wants to teach us in this, what He wants us to see or how He wants us to see this. We continue praying for His sustenance and strength. This race isn't a sprint, but we also hope it isn't a marathon, maybe a 1/2 marathon. As for Mayla, we pray she continues to be strengthened by Him, that her lungs and heart are strengthened and her breathing becomes easier and natural requiring no assistance, that her story continues to be told and that the Father is glorified for the work he has done, is doing, and will continue to do, that the others in the ICU will experience his loving touch and have a personal encounter, that YOU will have a personal encounter.

There is no doubt in our minds that Mayla is a living, breathing miracle, and as much as we may want to "think" this miracle is for us, it's not. This miracle is for the world, and for the world to see Him, and to draw into Him knowing that as he clothes the lilies of the field and looks after the birds of the air, we are soo much more important. And though things do not always go according to our plans (death and taxes are real after all), our plans are derived from an earthly perspective and so are distorted by our selfishness. His plans are bigger and better than us and ours, always. To Him be the glory for the work He has done, that which we see, and that which is unseen. May He refresh you as He refreshes us.

PS: for the second night in a row, we are closing down the hospital; kind of creepy actually.

Notice a lack of feeding tube in her noise? Feeding tube 0 : Mayla 1 

The red spot on her cheek is where the tape was that held the feeding tube in place. Second toughest chick I know. 

This is a familiar pose, where have I seen this before...

Oh yes. My money is on the Little Warrior...