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)

It was one of those mornings where I was trying soothe Nora with a bath, take a shower, brush my teeth and hair, give Nora her medicine and a bottle, get dressed, and clean up the kitchen all at the same time. Add to that, I needed to somehow get to Bible study by 9:30. It seemed like I should have some quick-paced, old fashioned piano music as the soundtrack such as in silent films. I somehow managed to get it all together, walking in only minimally late (I think?). It was, of course, another great message and I was so glad to have put forth the effort of getting there–even if my hair was still wet and hurriedly tied back in a bun!

Nana and Nora hung out for the day. Nora’s cold is still lingering on. Hopefully the breathing treatments are helping her. She’s in GREAT spirits otherwise and had a terrific day of milkies intake! Here are pictures from today:

Be joyful in hope, patient in affliction, faithful in prayer.
( Romans 12:12 NIV)

The news story about Beautiful Beginnings Birth Photography (that we were interviewed for) aired this evening on WCPO. I think I speak for everyone involved that Channel 9 did a great job of acurately portraying Melanie and Kelly’s amazing birth photography.

I’ve tried to embed the video of the segment into this post but can’t quite figure it out. So here is a link to the story. There is a VIDEO link on that page. Obviously, click that to watch it.

I got so teary seeing those pictures of new baby Nora, knowing they were being broadcast all over the tri-state. The raw emotion, the agonizing uncertainty of one moment to the next. I then got teary at the realization of how far we’ve come from that day. I went from not knowing if my baby girl was going to take her first breath to having a baby girl that “happysqueals” so loud, I wonder if she’s waking the neighbors. WHAT. A. MIRACLE.

Awhile back Melanie had posted a few pictures from the photo shoot she took of our family at the end of September. I wanted to share the slideshow of some more of those incredible photos:

This slideshow requires JavaScript.

I meant to post this yesterday, alas…

(Greta)

I love that her running mate is a cat! How could this world not be a better place with a kitty cat as Vice President??

I’ll be the one driving around with the “Don’t blame me, I voted for Greta” bumper sticker.

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I hate to abruptly shift gears to a not so funny topic, but Nora seems to have come down with another cold. There does not appear to be that many boogies associated with this one, but we had a little bit of a scare this afternoon. Our home care nurse that comes to visit every other week noticed a little bit of wheezing when she listened to Nora’s lungs. This was yet another instance of the right people being in the right place at the right time. Because of a conflict in schedules she didn’t make it to our house last week and came this week instead. With this knowledge we immediately made an appointment with our pediatrician who was able to see us right away – during his lunch hour, no less! After a breathing treatment, Nora’s lungs sounded much better. Her color is great, she’s eating great, and she’s in good spirits. What baby “happysqueals” when they’ve got a stethoscope pressed up against their chest!!?? We were sent home with a prescription for some more breathing treatments in the hopes that this will all be cleared up by Friday. I pray that it will.

Pictures from today:

I was able to get out for a little bit this evening with some girlfriends from the ‘hood. Obviously it wasn’t a “wind up at Waffle House at 3 am wearing sombreros and ponchos” kind of night, 😉 but we had a good time, none the less! Missed you girls!

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PS – If you live in the Greater Cincinnati area, there is a news story featuring our awesome photographer with Beautiful Beginnings Birth Photography. We were interviewed for the piece. It airs Thursday evening on Channel 9, WCPO during the 5:30 segment. I hope I don’t sound like a bumbling idiot — I was nervous, add to that a mourning dove that repeatedly kept crashing into our window over and over and over again while the cameras were on. First and only time THAT has ever happened!! Thank goodness for editing!! But just incase, I apologize in advance, Mel!!