I’m writing to ask for prayer and to let you know what is going on. It’s also a feeble attempt to get this crushing weight off my shoulders.

We went for the follow up appointment with the cardiologist yesterday, as I had mentioned. Both William and I were optimistic about the appointment. We were actually excited to be told how well sweet Nora is doing – come back in a few months, or so we thought.

As I understand it – the way that Nora’s little heart is operating is doing harm to her lungs. She will need surgery sooner than later to prevent any irreversible damage to her lungs- if that hasn’t been done already. She may or may not be a candidate for heart surgery. In order to determine if she is, she will need to undergo extensive testing on her other vital organs. If there is anything else not functioning properly, she is not a candidate for heart surgery. Even if she is a candidate, and she does get her VSD and ASDs repaired, it’s no guarantee that her blood flow will reroute the way it’s supposed to go. The lung damage will continue. She will never be eligible for a lung transplant. We are supposed to go back in a couple of weeks for another appointment to see if further testing is even an option.

I feel like I am suspended in the air by a flimsy fraying thread over a sharpened sword. The thread threatens to snap any second. It’s so against everything I know to be true about our amazing God. He’s not just going reach down with a pair of scissors and cut the thread, or give it a quick flick. His hand is right beneath us ready to catch us and hold us closely to Him. I KNOW that, I TRUST that and I BELIEVE that, but His merciful hand slips out of view here and there. All I see is that sword and it scares the hell out of me.

I can’t even begin to express the amount of love that I have for this precious baby that stares back at me in wonderment with her big blue eyes. She coos at me, having no idea there is anything wrong with her. It rips me to shreds to imagine life without her.

Here are pictures I had taken yesterday which I had hoped to use in a typical cute, light hearted post about how fabulous the appointment went. They’re still cute even through my tears.

I just made tinkle all over my Mom! You'd think she'd learn not to change me on her lap anymore!

Haha, Mommy!

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From a text I received this morning:

“He who trusts in the Lord, mercy shall surround him.” (Psalm 32:10)

At times, God required a season of waiting before He sends His blessing. Then trust becomes your greatest asset. If we don’t trust God w/our need, we will cry out in fear and panic. At one point during a storm on the Sea of Galilee, the disciples thought they would perish. Jesus commanded the wind and waves to be still. He taught the men how to trust Him even in the most tempestuous of circumstances, and He IS teaching you to watch and wait for His outstretched arms.

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I need to keep reading that over and over and over today. Please, God, have mercy on us!!!!

Sorry I wasn’t able to get this post up last night. My eyelids won the battle!

Here’s Nora:

Things were relatively quiet for much of the morning! I love to cuddle with my Mom.

The big kids slept until about 11! They must have been really tired!

I was excited to get a bath in the big tub.

Then later on in the afternoon, I was 'Nora Unplugged'. I kept my saturation levels up on my own for a good while!

How ' bout THAT? Eh???

Eyyy!! What's going on back there?? I better not get clocked in the head with anything!! Settle down back there!!!

Things can get really crazy around here when the big kids are awake! I can’t wait to join them in their shenanigans!

In the mean time I'll gladly accept loves and cuddles from my Daddy and Mommy.

I go to visit the cardiologist tomorrow afternoon! Please pray that Mommy and Daddy will be given some more insight on my little heart and lungs, and that I’ll get a good report! Thank you so very, very much! I’ll be sure to keep you posted!

Love,
Nora

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Nora’s appointment is TODAY (June 28th). As she said, we’ll keep you posted!

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)

Wha? *smack smack smack* mmeh? Oh! Good morning... *yawn*

Can I have my milkies first? I'm like a zzzommbiiee without my milkies.

Okay… Um, hi? It’s me. Nora. I think I’m ready to start the day now! I wasn’t particularly happy this morning. I may or may not have swallowed a LOT of air while I was devouring my milkies. That pretty much may or may not hurt my belly and may or may not make me very, very angry. Mommy had the good sense to take me on a little walk this morning.

How's this for a beautiful day? It was 71º at this point. Perfect!

We only walked about a mile today.

Daddy left for Texas Saturday morning. Mommy got a text that he was on his way home with Gavin and Greta. They were at a layover in Atlanta, I think?

Travelling looks like lots of fun!

Mommy and I had to stay close to home so we could leave to pick them up at the airport when they got in.

Around 1:00 we got the call and headed out. I needed loves and kisses while we waited in the cell phone lot. Mommy had that dang Baby Einstein wailing again. I don’t particularly care for her taste in music.

So now the rest of the family is home and things are back to being loud again! As my shirt says today – I AM “Daddy’s Sweetie”, but I sure the heck missed the heck out of my sister!!!!!!

Now I can rest easy. In my turtle wrap from Aunt Sarah. {Oh, and… HAPPY BIRTHDAY AUNT SARAH!!!!}

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Thank you, Nora! Yes, she was a tad bit gassy this morning and wanted nothin to do with nothin!!!! I hurried up and got dressed so we could get outside into the perfect weather that was going on out there. Nora did much better once she was in her stroller. As we were walking along, dodging sprinklers, I noticed a big bumble bee that came to hover over Nora for a few seconds as if though he were checking her out. I recalled how it was once surmised that bumble bees ought not be capable of flight based on supposed laws of aerodynamics. Their wings “should” be larger. Their bodies “should” be smaller. This theory of uncertain origins has since been debunked, but fortunately the bumble bee never knew the theory existed in the first place. (There were never any bumble bees on long hikes talking about how they were told they can’t fly, so they’d better not even try.) At one point in time someone(s) determined that babies born with chromosomal “defects” shouldn’t be able to do a lot of things, but they do anyway. Someone(s) concluded that babies like Nora with trisomy 18 are “incompatible with life” thereby implying that they’re not even worthy of being given a CHANCE. Unlike the bumble bee, we all decided to let someone(s) theoretical guesswork become the widely accepted practice. What importance is this life if it’s just going to die anyway… and *snuff*. Thereby ending a whole world of what “could have been”. I suppose it is indeed hard to be compatible with life when you aren’t even given a chance at it. (?)

I watched as the bumble bee took off and disappeared into the cerulean sky. It seemed to be pretty capable of flight to me!

Jesus replied, “What is impossible with man is possible with God.” (Luke 18:27 NIV)

It was a lazy, laz-E, LAZY day today. We just layed around and drank milkies.

We did walk up to the mailbox later on in the afternoon and then we sat out on the back deck for a little while this evening.

Nora really seemed to enjoy the view (not the TV show).

Gavin and Greta are still in Texas. I heard that they went fishing today!

It looks like Gavin got all hotted, which I guess might happen when it’s a high of 104º?

I hope they didn’t get too acclimated or they’re going to be in their winter coats for tomorrow’s high of 81º when they return home!

Nora and I really miss the big kids!

Today I ventured out for the first time on my own, just Nora and I. Nora did amazingly well with only a few intervals of fusses. We went to my sister Emily’s bridal shower / Babypalooza. There were three other baby boys there all about Nora’s age — give or take a few weeks. I think they all had their eye on this gorgeous little miss!

Have you seen my mother?

Oh! There she is!

This is one of my cousins, Gracie

This is my Aunt Em

Me and Mommy

Three Little Birds!!

There is no fear in love, but perfect love casts out fear. For fear has to do with punishment, and whoever fears has not been perfected in love. (1 John 4:18 ESV)

Good morning!

Hmmm... What should I have for breakfast?

Um, I might like to try the milkies, please!

Things are pretty quiet around here with my brother and sister being away. Mommy sure hopes I don’t get too used to this quiet!! They flew down to Texas with our MeeMee to visit our cousins, and our Aunt and Uncle! They sent us this picture:

It looks like they’re all having fun! I miss them! Maybe someday I can go too!

Today I had great fun. I got to go swimming with my Mommy in the big tub again!

I really, really like this. It’s kind of like being in Mommy’s belly again! I like floating!

Evidence of a fun, fun time!

After that I was really relaxed and started to doze off on Mommy & Daddy’s bed.

But nothing compares to Mommy’s arms

I’m still doing very well with my saturation levels:

It’s been a nice fun day, but I’d better get some rest here. I have a very busy day tomorrow! Thanks for praying for me!!

Love,
Nora

Sing to the Lord, for he had done glorious things; let this be known to all the world. (Isaiah 12:5)

First of all, thank you to everyone who came out to Chik-fil-a today and this evening! That was so awesome to see all of your pictures and to hear about the amazing turnout! We were able to make it up there around 7:30 this evening. We loved seeing our friends and neighbors and meeting new friends! Your love and support really mean so much!

Nora was really excited about getting out tonight and wanted to get spruced up for the occasion. She had a nice relaxing bath while “3 little birds” watched over her the entire time from a tree in the backyard!

It took a little while, but she finally decided on the perfect outfit:

Um... Let's try the pink and black ensemble, please.

Does this make my shoulders look big?

Here are some pictures from tonight at Chick-fil-a:

This stuff is no good. Do they have any milkies?

Mmmm.myah.mmuch better, please.

In other news, Nora is down to an 8th of a Liter of oxygen! I think she’s anxious to be done with all of these stinkin tubes. Last night she ripped one side of the tegaderm off of her little cheeky for Miss Pam!! (Sorry, Miss Pam!! Love, Nora) I put new tegaderm on this morning, but not before snapping a cute picture of her:

Terribly sweet cheeks or what!!??

Here Nora is just before bed time after her busy day. Someone doesn’t look very sleepy!

She’s busy thinking about all of her friends that love her. Thank you again for the huge turn out today! You are all awesome!!!


I thank my God every time I remember you. (Philippians 1:3 NIV)

Gavin & Greta were away on a play date, and William was at work. So Nana (my sweet Mom) came all the way over to accompany us to Nora’s appointment with the pediatrician this afternoon. (I’m not totally comfortable driving with no one sitting back with her to help her if need be.) I’m proud to report that we have a very big girl on our hands! Nora weighed in at 6 lbs. 14 ounces and she’s grown another inch!

She is now 20½ inches, which has almost landed her in the 5th percentile!! She’s still a little behind in other areas of the growth chart, but that is very normal for her! Dr. Bolling was extremely pleased to hear that we’ve been able to successfully decrease her oxygen flow without affecting her sats! We plan to bump it down to an 8th of a liter to see how she does with that.

Earlier in the day we took a walk up to the mailbox before it got too hot out. Nora was fussy and needed a change of scenery. That seemed to do the trick and she fell right asleep. Upon arriving back home, I brought her in her carrier seat into the living room. I didn’t want to disturb a sleeping baby!! She slept contentedly in there for awhile. Every so often I would peek in at her. At one point I peeked in, and this is what I saw:

Busted, Mommy!

She was just quietly looking around in there, as sweet as she could possibly be!

Nora is now sound asleep as I write this. “Decreased activity” is one of the side effects of her DTaP/Hib/IPV vaccine that she received today.

Nora's Nest

I’m not sure what she decided was worse–the shot or the Children’s Tylenol that they administered beforehand. She expressed great displeasure at the grape flavor. “You really ought to take this crap off the menu,” she said, “This stuff is NO good!!!” … Yet she drank the barium down at the swallow study like it was the best thing she’d ever had! (?)

Just a reminder – it’s Nora Rose Day at Chick-fil-a on Houston Rd. in Florence, KY June 21st, 11am – 8pm. If you mention Nora’s name BEFORE you order (dine in, carry out or drive thru) 15% of the sale will go toward the Nora Rose Fund. And because you’re wondering: the Nora Rose fund was set up by some dear neighbors to assist with any excessive medical bills that may come about. It is our hope that Nora will continue to do as well as she has been and that we won’t actually need to use this money for that purpose. Instead we would love to donate it all to a worthy organization(s) in celebration of Nora’s life! If you are unable to make it to Chick-fil-a, but you’d still like to contribute to the Nora Rose fund, you may do so at any Fifth Third Bank. Thank you so very much, Becky for coordinating Nora Rose Day at Chick-fil-a and to Ron & Darla for setting up the Nora Rose Fund! You’re awesome!

Please accept my blessing that is brought to you, because God has dealt graciously with me, and because I have enough.” Thus he urged him, and he took it. (Genesis 33:11 ESV)