Monday

A chilly fall day with no where to go is the perfect excuse for many baffs!

Tuesday

I got tons done today in preparation for Thanksgiving plus a little clothes shopping for myself. Stone washed sweat pants generally aren’t well received outside of my living room and the two outfits that actually fit need a break. As I was perusing the racks and racks of clothes I became increasingly aware of the fact that I really have no idea what is “in style” anymore! I don’t watch enough TV or read any magazines that dictate what all the “cool kids” are wearing. Swanky Seventeen-year-old Me would be absolutely horrified!!! I finally settled on this:

I’m kidding, Seventeen-year-old Me!

I also braved the grocery store, picked up a TURKEY and the last couple of boxes of stuffing. My parents and my Oma are coming over on Thursday and for that I am thankful! I am also thankful I was able to get out today and for my sweet Nora-cuddlers who allow me to do so! 🙂

This is what I learned in physical therapy this morning!

It's very interesting. When I'm not cranky!

Hold on, I'm dreaming of baffs...

Oh, look! Dreams come true right away!

I like baffs, I do!

And hanging out in the living room!

Praise the Lord .
Give thanks to the Lord , for he is good;
his love endures forever.
(Psalm 106:1 NIV)

It was a beautiful day in so many ways!

The heavens declare the glory of God;
the skies proclaim the work of his hands.
(Psalm 19:1 NIV)

Twenty years ago today I was frantically pacing my bedroom with my best friend after I had just taken a positive pregnancy test. Nineteen. Still living at home. Unmarried, unstable relationship. Plans to go to college. What will people think? My parents are going to kill me. What am I going to do? Those were just a few things running through my mind. My misguided attempts to seek acceptance had gotten me into a terrifying predicament that really there was no way out of. There may have been a way of escaping the “what will people think?” aspect, but that was NOT something I could live with. Besides, was it really THAT important what people thought of me?? Twenty years ago I had no idea who that little embryo was going to be, but I made the first of my many steps into blind faith. I may not have consciously voiced it, but I was placing my trust in God, allowing Him to turn my perceived turmoil into something beautiful. And did he EVER. That little pink line on the pregnancy test turned out to be my beautiful birth daughter who is completely, totally and utterly meant to be here! I vividly remember my fear and anxiety over the situation, but how inconsequential it seems when the story has so beautifully unfolded over the years.

So here I am twenty years later, wondering how time flew by so fast. On this very day twenty years later I look in awe at yet another precious babe who is celebrating her 7 months of life today. Once again I have placed my trust in God. I can’t help but wonder what this will all look like in another twenty years.

Hey... Do I hear baff water running????

Ahhh. Baffs.

Happy Rock Star

It's not easy being sweet all day!

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.
(Ephesians 3:20-21 NIV)

Immeasurably more, indeed!!!!!!

Oh, look how sweeeet and cute I am!!

Don’t let her trick you!! This certainly does not look like the unruly baby that kept her parents up long into the night and nearly drove her mother to the brink of insanity! But it is!

Running on fumes, I had very little patience left. Fortunately my sweet, amazing hubzbind was not only able to step in on the second hour of non-stop crying, but stayed home this morning to let me catch up on my ear-plugged sleep. I hope and pray I can return the favor by keeping Nornor content and quickly back to sleep tonight! There is nothing better than the luxury of a full night’s rest! I was (jokingly!) conspiring with William about what we could do to get thrown in jail because maybe we could SLEEP there. Desperate people do desperate things!! (settle down, I’m kidding!) (kinda! 😉

Although we are low on energy we had the great pleasure of going to the Brian Reagan (comedian) show this evening with my parents. It’s always good to get out and LAUGH! Funny, funny stuff!

Meanwhile back at home:

I conclude by asking for prayer not only for Nora, but all the other babies and children out there with serious and life threatening illnesses, of whom there are far too many. Lengthy hospital stays, medications, medical equipment, hospital bills and their families’ stress of trying to juggle their old way of life with the new. Tonight little Lee is on my heart. You can read more of his story here.

It is God who arms me with strength
and keeps my way secure.
(Psalm 18:32 NIV)

Nora’s cardiology appointment went well. The findings of her echocardiogram showed no changes. Everything is still the same. Although I was hoping there was improvement, I’ll take this news. Our doctor still does not agree that surgery would be of benefit despite the second opinion we received. The waters are kind of murky for us on that subject. We’re still waiting on responses from two other hospitals. Hopefully their opinions will offer some clarity.

I’ve been up since 3 am, which is when William went to bed, only to have to wake up at 5 so we could be on the road by 6. Nora did not sleep for more than 15 minutes at a time and it looks like tonight is going to be another such night. I attempted to take a nap when we got home with my Mom here to watch Nora. Barking dogs, garbage trucks, leaf blowers, chain saws… Everything but a marching band the second I had the audacity to slip off to sleep! This was with my ambient rain playing on the ipod and the bathroom fan on. Not like I expected the world to pause while I took a nap, but come on!! So here I am delirious, probably rambling with a wide eyed baby who is about to start freaking out again. Good thing she’s really sweet and cute…

Earlier today:

Silly Greta

Nora has a cardiologist appointment BRIGHT STILL DARK and EARLY tomorrow morning (echo, etc @ Cincinnati Children’s). Please say a prayer that all goes well and that there is evidence of God’s healing on her sweet heart and lungs!

There was no more wheezing heard in Nora’s lungs this morning when our home nurse came to visit!!!! What a relief! Thank you for your prayers in regard to that!

I must get some sleep so we can be out of here by 6 am!

I’ll leave you with this sweet video:

Heal me, Lord , and I will be healed;
save me and I will be saved,
for you are the one I praise.
(Jeremiah 17:14 NIV)

Pictures from Tuesday

It was a day of many baffs! With each bout of fussiness my thoughts would start to get carried away… “Something is terribly wrong,” “She’s getting sicker…” swirling around in a toxic fog in my mind. On the verge of tears I’d start up the bath water. Each and every time an inordinate amount of stinky bubbles would present themselves, leaving behind a happy squealy baby. Three times this cycle repeated itself. You would have thought that by the third time I’d have figured it out!!

I awoke this morning feeling overwhelmed and on edge without really anything to set it off. 

I am reminded:

Surely God is my salvation;
I will trust and not be afraid.
The Lord , the Lord  himself, is my strength and my defense;
he has become my salvation.
(Isaiah 12:2 NIV)

With that, I take a deep breath and begin my day!

PUBLIC SERVICE ANNOUNCEMENT: I apologize for the earlier accidental posting for those of you who subscribe to receive emails when I update. I was TRYING to embed a video into the blog and for some reason it doesn’t seem to work. In my heightened state of aggravation, I’m so relieved I chose not to type out a bunch of profanities that would then in turn end up getting sent out all over the place. Awkward!

Despite the rain and the return of the cold weather, and despite the fact that someone little in our household received a synagis shot (to prevent RSV) it was a good day. Her terrible sadness only lasted a few minutes and then she was back to squealing again. Nothing a baff couldn’t cure!

There are the moments throughout the day when fear and worry start to trickle in with the sound of the raindrops on the roof, but I am quick to recall the message at church this past weekend. Specifically the story of a family who CLEARLY has the power of the Holy Spirit fueling their every breath.

I was attempting to embed the video of the weekend service into this posting, but the code keeps deleting when I save it.

So since that won’t work CLICK THIS. Please, please, please, PLEASE watch at least the few minutes of the story starting at minute 9:30. The entire service is AWESOME and I strongly encourage you to watch it when you have an hour to spare.

I was so incredibly moved by this family’s story in so many ways. Were someone to have explained this story to me without the luxury of a video to share, I might have envisioned a nerdy 80s televangelist looking guy whose wife was a homely little churchmouse in ruffles and a full-length denim skirt — people I couldn’t possibly relate to or have anything in common with. Not that there is anything wrong with nerdy 80s televangelist guys or homely little churchmice in ruffles. (In fact, I think I might be the reigning queen of homeliness these days in my stone washed denim sweatpants. Judge not… )

My point is, we can make excuses to stay caught up in our familiar way of life by assuming that people who really open up to the power of the Holy Spirit (such as these people in the video) are some “strange religious weirdos” / “people I could not possibly relate to” / “people that don’t want to have any fun”. Those excuses don’t hold up when I see things like this. I see the love in their eyes, I hear the passion in his voice when he talks about his kids, his wife. I see something “other worldly”.

I think God knew that I’m much too much of a procrastinator and an excuse maker to actually go out and take on that kind of responsibility on my own. But ultimately He knew that my family and I would be CRAZY BLESSED by suddenly having our lives drastically altered from what it once was. Life is not easy or comfortable for us, but through our struggles and through our days of uncertainty we find ourselves drawing closer and closer to the Creator, the one true God, our Savior and Lord. He strengthens me with power through his Spirit in my inner being.

I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God. Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.
(Ephesians 3:16-21 NIV)

And now these three remain: faith, hope and love. But the greatest of these is love.
(1 Corinthians 13:13 NIV)

A few weeks ago we sent Nora’s medical records out to 3 different hospitals based on the advice of a couple of other families in the t18 community. We are in quest of second opinions about Nora’s heart as it relates to her pulmonary hypertension (the reason for her oxygen tubes). Nora’s case was taken before the board at Cincinnati Children’s and it was concluded that Nora would not be a good candidate for heart surgery at this time. We were okay with that and the explanation that was given to us. However, this is our daughter’s LIFE we’re talking about. Of course we were interested in some other opinions just to make sure we have all of our bases covered. We have heard back from one of the hospitals. The doctor that William spoke with yesterday still has to bring Nora’s case before the board at his hospital, but he is of the opinion that Nora would be an excellent candidate for heart surgery. I won’t go into all the specifics, but basically it was a really good conversation. William said this doctor didn’t sound wishy washy about it – he very firmly stated that Nora would benefit from surgery.

(deep breath) We’re still anxious to hear from the other 2 hospitals, but this is definitely something we’re going to pursue. Yes, I am scared to death. It’s tough to reign my thoughts in from going there from trying to imagine what that whole experience will be like. I do feel like we are being led in the right direction. There are just lots of hills and curves and it’s impossible to see around every corner. While I’m humanly afraid, I am reminded of all the other times I was terrified out of my skin. Each and every time, without fail, God delivered us through the storm. I don’t doubt that this time is going to be any different.

Running low on sleep, so I will conclude with pictures! 🙂

Friday

Saturday

We enjoyed this beautiful day at a park by the river.

Is that an angel's wing draping across Nornor?

Greta saw them first!

Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.
(Romans 12:2 NIV)