Blessings?

Parenting is not for the faint of heart, apparently.  I've never been much of a night owl... and you know where this is going.  A few nights ago Nick and I took shifts being awake with Ada after she had received her first round of immunizations.  I guess all the all-nighters in college served to prepare me.  Who am I kidding?  I had maybe two or three all-nighters in all four years of college.  I need my sleep.  But not when I have a dear little one who is in pain and needs to be held.

On top of the distress from the shots,  her pediatrician has started her on a diuretic, with the purpose of clearing out her lungs of excess fluid.  I can't completely understand the situation, but in short, Ada's heart makes a choice on where the blood will go- some to the lungs, some to the body.  And the good news is that plenty of blood is getting to the lungs, so her blood oxygen saturation levels are in the high 90s, or very good for a "normal"-hearted person.  But that also means that her lungs are getting "wet" because of the great amount of oxygen, and thus she is tiring easily and feeding has not been going well at all.  We haven't had another baby to compare Ada to, so we really weren't sure of the expectations for how quickly she should be feeding, and how much she should be able to consume in a matter of minutes.

Doctor appointments are stressful to me, because I don't know how freaked out I am supposed to be.  I've been getting direct phone calls from the pediatrician and the cardiologist, which makes me realize that they are indeed staying on top of Ada's situation, which is great... BUT, also that they are expressing concern over her situation.  As I go through my daily routines with her of feeding and naps and anything in between, it is easy to relax a bit and think everything is fine.  Apparently 30-40 minutes to drink 2-3 ounces is not fine.  How un-fine are we talking?  I want her to be fine, I want life to be normal, at LEAST until the surgery time in the fall.  These days with her are enjoyable and sweet and special and at the same time they are so scary and tiring.  We can't do this on our own.

Listening to the radio yesterday I was reminded of a well-known Christian musician whose son has a very similar heart condition to Ada's.  He has a blog and many supporters, and a medium through his music and the airwaves to share about what he has learned through this process.  Well, I have a blog and many friends, and I certainly could write a song or two if I thought that would help me feel better or express my situation.  But as I consider that, I realize that none of the lyrics I would choose would be very radio-friendly.

There are many times in a day when it is hard to remember the simple, yet amazing gift of life itself.  I am privileged to care for a little baby girl and having experienced loss, it is all the more precious to me to have Ada in my arms.  But some days I have words I'd like to share to whomever will hear that do NOT sound too KLOVE friendly.  The first time I heard the song "Blessings" I wanted to change the channel immediately... "What if Your blessings come through raindrops, what if Your healing comes through tears, what if a thousand sleepless nights are what it takes to know You're near..."  Ugh.  Some day I'll probably love the song.  But guaranteed, not in the middle of a sleepless night with a screaming baby and a scary heart condition.

Many have asked how we are doing, and the Minnesotan in me starts with a tentative, "Fine..."

And then I realize that I don't have to be fine right now.  I'm hanging on.  Most days I bobble between feeling somewhat normal and showered and fed and grateful to just plain old surviving.  There are a good many things I'd like to be doing (like actually giving more attention to the plants on my deck so we will gain more than two teeny cherry tomatoes this summer - or making a beautiful mobile for the nursery to stimulate Ada's brain development - or writing thank you's to the many people who have blessed us this past month - or remembering "tummy time" for baby Ada - or vacuuming - or planning ahead for fall music lessons, fast approaching - or ...) and yet in all honesty, my full time job is feeding Ada, and working so very, very hard to get her to gain weight.  And when she won't drink, she won't drink, and I get frustrated and scared and begin to dread the next doctor visit and what the word will be at that point.

Another lesson in life that we are not in control.  And though tonight I cannot sing the Blessings song because I don't WANT that-  I want sanity and comfort and protection and health and heck, a bit of prosperity wouldn't hurt, either- I know that it is true that we are not alone in these days of survival.  This is a season, God only knows how long or how short, that my prayers are those of desperation:
Lord, help.  
 I need sleep.
 Help her to eat.
 Someday I'll trust that God will give me the grace and strength to lengthen out my prayers and my focus and my clarity and perspective on life so that I can write a song like "Blessings" and mean it.

For those who pray,
pray that Ada would eat what she needs to grow as big as she needs to be for the fall surgery;
pray for our doctors to have wisdom in her treatment (and that they'd communicate with us well so we don't needlessly freak out over not understanding what they're saying);
pray for rest for the three of us, and perhaps our neighbors as well?!;
pray for financial provision;
pray for Nick and I to grow together in this time of stress and support one another;
pray for the healing of Ada's heart.

Love to you all, goodnight.