Busy long day! Will update tomorrow!

Goodnighties!

Nora woke up so happy today! She was very generous with her sweet smiles too!

Here are some pictures from today:

Mmmm. These finger sandwiches are delicious!

This is what was going on after I had a quick shower this morning. Everyone was just hangin' out!

Greta was doing so well with Nora this afternoon and even put Nora down for her nap!

But the fruit of the Spirit is love, joy, peace, forbearance, kindness, goodness, faithfulness, gentleness and self-control. Against such things there is no law.
(Galatians 5:22-23 NIV)

Getting ready for my appointment!

Nora had her echocardiogram and appointment with the cardiologist this morning and it went very well! We were so happy and excited that our nurse friend Linda M., who is now like family was able to stay with us throughout the appointment. She definitely has a soothing-effect on Nora!

It was determined that Nora is still not having any symptoms of congestive heart failure, maybe some slight retraction (ribs showing when inhaling), but that’s it. Surgery would not be of benefit to her still at this point because the VSD is not causing any issues, even with being on the sildenefil. Dr. Hirsch, our cardiologist said that she looks great! I love that Nora was so alert and talkative for all of the doctors! They seemed to be very fascinated with her! I feel that we are so blessed to have this amazing team of doctors who genuinely care for Nora. She is NORA, not trisomy 18, and they get that!

Nora's heart

Nora has been such a happy smiley baby today. She smiled almost the whole way home.

And then of course later in the evening Nora was smiling for her beloved bath time. She wasn’t the only one smiling in the tub. How beautiful it was to be sharing that precious bath time with my sweet baby daughter with a rainbow glowing in the sky right outside the window!! It was the closest thing to heaven in that moment!

Oh look, Mom! Is that a rainbow?

Yep! Sure is!

Yay!

I like to make my own bubbles in the bath!

I believe I am very loved!

Beside the appointment this morning we had a lot of running around today! I had a doctor’s appointment of my own and then took Gavin to get fitted for his tux for his Aunt Em’s wedding in a few weeks!

Gavin is considering taking up the shoe horn in band.

Gavin's new friend lost his head because it wasn't attached.

We love to make each other laugh! I love that kid!

I’m so relieved today is over! I’m about to unwind with some Marley’s Mellow Mood and call it a night. Every little thing is gonna be alright! (Thanks, Will R!!!!!)

Great are the works of the Lord ;
they are pondered by all who delight in them. (Psalm 111:2 NIV)

Nora holding a beautiful card I received I’m the mail today. There is of course the beautiful trio of birds, and now the delicate cherry blossoms…

I am still in the process of sending out Nora’s birth announcements. The stamps I chose for the envelopes are primarily pink and blue featuring cherry blossoms. I chose them only because I liked the way they looked and because they matched the envelope color. I noticed there was a description of the stamps on the back of the sheets. Basically it explains the cherry blossoms in Washington D.C., how they came to be, who planted them, etc. At the end, it says this, “Because these spectacular trees flower so briefly, the Japanese often see them as poignant symbols of transience–making every blossom a invitation to celebrate being alive.” Pretty cool and appropriate, I’d say!!!.Just as is this card!

I’m of to bed with only a miniscule dash of anxiety lurking beneath the surface of my skin. Nora has another echo scheduled for tomorrow morning at Children’s. We’re hoping to get some answers and some direction. Please pray that all goes well for that visit and specifically that the echo goes smoothly for Nora with minimal stress for her.

Why, my soul, are you downcast?
Why so disturbed within me?
Put your hope in God,
for I will yet praise him,
my Savior and my God.
(Psalm 42:11 NIV)

Throughout my life I’ve heard about, witnessed and endured a fair share of tragedies. All I have to do is turn on the evening news for a half an hour and I hear the stories of all the people who were killed, murdered, abused, and wronged throughout the past week, tied in with some sports and weather. Entire programs are focused on incidents of evil and hatred either real or fictional — Unsolved Mysteries, America’s Most Wanted, Criminal Minds, CSI.

I only hear about the incidents themselves — nothing past them. They sadden me and at times make me angry, cynical or fearful. Rarely is it ever reported about how God stepped in and salvaged the wreckage and created beauty from dust aka abject misery. Based on the way that that information is fed, it’s easy for me to get caught into the trap of believing “that’s all it is” for those people–shattered, ruined lives. Sadly enough, maybe it is. Maybe they don’t believe there could be anything else. If I don’t believe it and I’m not looking for it, chances are, it won’t be there. Instead, I have faith that God does not and will not leave me in a heap during those moments of despair even though that’s how it might appear at first. He’s right there with His arms outstretched waiting for me to reach for Him. He loves me! AND YOU!

If I feel that nothing good has come forth from any given failure, affliction, or cataclysmic loss that I’ve endured, either I’m not looking hard enough or I’m being impatient, expecting God to operate on my watch. The beauty WILL come sometimes immediately other times in years to come. I have absolute faith, hope and trust in that! I will never forget something my Dad said to me many years ago as we were driving away from the gazebo where I had just parted with my birth daughter. Through my blur of tears and the boulder in my throat, I managed to smile when he reminded me,”This isn’t the end of the story, Lis! It’s just the beginning!” You were so right, Dad! Just the beginning, indeed!!

Sometimes in my darker moments while in conversation/prayer with God I’ll catch myself trying to explain my love for Nora pleading for more time with her, “I love this baby soooo much, God… You couldn’t even believe how much!!” And as soon as that phrase, or the like, is uttered I can imagine God laughing with raised eyebrows, “Seriously, Aleisa?” That’s pretty much like telling Thomas Edison that he doesn’t know how the light bulb works (if he were still living…). OF COURSE God can believe and understand how much I love Nora!! He is the inventor and author of love! Our capacity to love is only a fraction of the real deal.

I think of the love I have for my big kids (because that’s really the only way I can try to comprehend God’s love for us, His children). I love my kids, but that doesn’t mean that I’m going to spoil them and give them what ever they want, follow them around picking up every little mess they might make, essentially a slave to them. I have a greater image in mind. I know that they’re going to grow up someday. They need to learn how to become productive members of society. They need to learn several life lessons and basic survival skills. Those lessons aren’t always easy. There will be moments of pain and suffering, as they would perceive it – but that’s what will mold them into who they will become. I’d like to have my kids happy and content all the time, but I’d be doing them a terrible injustice if I gave them what ever they wanted when ever they wanted it (think Veruca Salt). In the way that I believe I know what is best for my kids, I will TRUST that God knows what is best for me. He might assign some very difficult tasks, but it will mold me into someone much better than I am today. After my tears are all wiped away and I’m finished pouting, maybe God will “take me out for ice cream” later.

Be strong and take heart,
all you who hope in the Lord.
(Psalm 31:24 NIV)

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Nora seems to be doing well with the Zantac! Just a lazy day here at home!

Singin don't worry about a thing. Every little thing's gonna be alright!

On your mark...

Get set...

SMILE!!!!

He gives power to the weak
and strength to the powerless. Even youths will become weak and tired,
and young men will fall in exhaustion. But those who trust in the LORD will find new strength.
They will soar high on wings like eagles.
They will run and not grow weary.
They will walk and not faint.
(Isaiah 40:29-31 NLT)

3 birds I noticed in Greta's prayer book

Just another nice and relaxing day with lots of sweet moments…

We’re trying Nora on Zantac to see if that helps her with any reflux that might be going on. Maybe someday we’ll figure out the exact type of formula, bottle, medicine combination that works for her… I was relieved to find that she’ll at least take the Zantac without any troubles. I tried to give that stuff to Greta when she was a tiny fuss machine. Greta did NOT like the taste of that stuff and would’ve kicked me in the teeth if she knew how.

Speaking of Greta… Greta was very sad to have parted with Henrietta Pussycat this evening.

There, there, now, now!!

Henrietta found a new home with Stacie,
Aaron, Lexie and Heidi and is now known as Lily! Greta misses that sweeeet kitten, but was very happy to get a text message from Lily right as she was getting ready for bed! Thank you, Stacie, Aaron, Lexie and Heidi for giving Lily a good home!! We know you’ll take good care of her!!

And the day concluded with a beautiful sunset – even if it was just over some trees instead of Lake Huron!

Can all your worries add a single moment to your life?
And why worry about your clothing? Look at the lilies of the field and how they grow. They don’t work or make their clothing, yet Solomon in all his glory was not dressed as beautifully as they are. And if God cares so wonderfully for wildflowers that are here today and thrown into the fire tomorrow, he will certainly care for you. Why do you have so little faith?
(Matthew 6:27-30 NLT)

Hi Everyone! My Mommy is real sleepy! She’ll update in the morning! I love you!

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Or the evening….

We’re enjoying a nice restful weekend home from the hospital, obviously! Yesterday I had the opportunity to take the big kids swimming with Nana and Papa, and my Aunt Diane at Nana and Papa’s swim club.

Gavin, Nana, Aunt Diane and Greta

Meanwhile Nora was at home with Daddy smiling up a storm!! These are not little accidental dream smiles – they are the real deal and beyond CUTE!!

All that smiling makes me sleepy!!

We had a long day swimming, but we were excited to get home and see NorNor. We rode the Anderson Ferry back to our house as we usually do, but this time we got to ride on Boone 7 which is the oldest of the three ferry boats.

Heart shaped prayer tree up on the hill!

They don’t often have this one running. When I was a little girl, Boone 7 was the only boat available for trips to pick up relatives at the airport or visit Aunt Rosie in Kentucky. It is considerably smaller and fits only about 6 cars (or one big giant Country Squire wood paneled station wagon back in the 70s).

That’s me (blonde) with my cousin Amy on a trip across the river on Boone 7 – circa 1976?

We were glad to get home and love on Nora!

Here was my awesome God hug of the day.

I also had THREE enormous birds fly over my car last night. It was almost completely dark (9:35 pm). I barely saw them and they had such a huge wingspan that it looked like they were flying in slow motion. No idea what kind of birds they were! But whatever they were, they gave me the chills like no other!

Be strong and courageous. Do not be afraid; do not be discouraged for the Lord your God will be with you wherever you go.
(Joshua 1:9)

We are home. Just like Dorothy said, “There’s no place like home…”

I couldn't wait to get my bathies!!!!

It felt so good to be so fresh and so clean that I fell right to sleep afterward!

I am happy and sweet.

There is a bit of a concern over Nora’s weight gain, even though that cute double chin tells a different story. Specific prayer this week would be that Nora continues to do well with her soy milkies  and that she would gain all the weight that she is supposed to.

We have been so comforted and encouraged by all of your prayers. Thank you always!!

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.
( 2 Corinthians 4:16-18 NIV)

What a beautiful reminder this is!!! Eternal glory that far outweighs this? Sign me up!!

It was a good day today, despite the fact that we’re in a hospital. Nora is still continuing to tolerate the sildenafil without any complications. I realized today after a handful of e-mails and texts from friends / family that I wasn’t very clear on WHY we are here at the hospital. I mentioned this next step way back in Day 94 but I suppose that was a while ago. The days fly by so fast, I can hardly keep track of them. The sildenafil is being administered to her in increments with the hopes of bringing about symptoms of congestive heart failure — as awful as that sounds. If she is able to exhibit symptoms, it will prove that her hypertension is reversible and she will be a better canditate for heart surgery. I hope I explained that correctly. The sildenafil does not bring about permanent congestive heart failure. Symptoms will only show while she is on this medication. We’re hoping to be discharged tomorrow morning!

This afternoon I had my lunch outside and enjoyed the warm breeze, the heat of the sun on my skin and the antics of the little sparrows all over the place. They were like little wind-up toys hopping around to inspect every little bit of substance that might be a bite to eat. A juvenile fluttered her wings begging for food from her mother as a tasty morsel was tenderly dispersed into her beak. Another robust little male buried his feathered belly in a pit of dirt, vivaciously fluttered his wings, partaking in a lavish dust bath. Yesterday there were about 10 – 15 of the little “rat birds” enraptured in these amusing little dust baths. William suggested that the section of mulch was a sparrow bath house. I find such pleasure in watching these “common”, “diminutive” little birds because they remind me of Ava. Ava was far from common or diminutive; she had an incredibly unique and beautiful personality. I knew that because she lived with me for 9 years. The longer I watched and studied these sparrows in nature I began to observe distinct differences in their personalities as well. Some were bold and audacious, while others were cautious and wary of my every move. All different, all unique, each an individual piece of God’s creation. Easy to assume they were mass produced with a standard mold, void of any individuality, one-size-fits-all. Look closely and you will discover otherwise. Every little sparrow is different and known by the same God that also created the universe! Amazing to think about. “God sees the little sparrow fall, it meets his tender view, If God so loves the little birds, I know He loves me too.” (thanks for that samm!)

I left this afternoon to take Gavin and Greta to their dentist appointments. No cavities, but the crystal ball reveals lots of orthodontist visits for both. I’ll let you know when the orthodontia fund raisers will be.  (kidding!… kind of… 😉 ) While I was gone, Miss Nora Stinky Pants loaded up THREEEEEEE diapers! We talked about this while Daddy was at work and she agreed that she’d wait until I’d left to stink the town up. Way to go, NorNor! (no pun intended)

Here are pictures from today:

Nora, you have stinky hands!

WHAP!!

Sleepies

Arrrrrrrrrrrr!!!!!

Yo ho ho and a bottle of milkies!

Nakey cakes

Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life?
( Matthew 6:26-27 NIV)