Nora’s cardiology appointment went exceptionally well yesterday morning! She only had to have a quick EKG and exam. Dr H said he is very pleased with her numbers and overall appearance. There really is no telling what caused that hiccup in her heart rate. Incase it WAS the Synagis shot, I’m relieved that was the last one for this season. Definitely something to keep a close eye on if she has to get them next year!

Nora is 15 lbs. and 14 oz. and 26 inches long! She is getting sooo big, so fast! The fact that she’s eating and gaining so well is very encouraging!

We were so excited to see Linda M on a chance meeting in the hall on our way out. She is our “Angel on Earth” who has a way of always showing up in the right place at the right time! How sweet it was to be able to return that favor to her!! You made our day too, Linda! We’re so glad you’re back!

Nora was glad to be back for baff time!

Tuesday

It’s good morning time!!!

Greta spent the night at our friends’ house, so it was just Gavin, Nora and I after William left for work. (The big kids are on spring break this week.) When Nornor’s nurse got here Gavin and I went out in search of an adventure.

First stop: shore of the Ohio River in Petersburg. Lots of rocks and sticks were thrown. Gavin has been an avid rock thrower since he was a very little guy!

From there we went to lunch, then back home. We peeked in on Nornor before heading down to the creek in our backyard for adventure part 2.

I love being able to spend one on one time with my kids!

Back home again that evening there was a really cute, sweaty baby girl who was requesting a baff. It got pretty warm in our house for a couple of days which made for a sticky, hot, sweaty baby. She really seemed to like the cooler temperature of the water that we opted for! I foresee a little kiddie pool in our near future!

Wednesday

“It’s kind of fun having my brudder an sister home like this! I love them soooooo much!”

“Arrrrrrrrrr, me mateys!”

“Look at me in my big girl stroller! Going for walks makes me hungry!”

“Nom Nom Nom Nom Nom.”

In a nutshell (or a lengthy blog post, as the case may be) all is well. God never ceases to amaze me, proving to me over and over and over and over again that He has complete control over this. Can you even believe that Nora is going to be ONE YEAR OLD next Wednesday?? We never dared to dream that we would see this day.

Nora trying on her birthday dress:

I had planned on announcing an Open House type of party to give all of you the opportunity to meet Nora. However, in light of everything that has happened lately we are going to have a smaller scale celebration. I promise we will have a day to meet Nora in the summer! 🙂

“I knew you before I formed you in your mother’s womb. Before you were born I set you apart and appointed you as my prophet to the nations.”
(Jeremiah 1:5 NLT)

That verse gives me the chills every time I read it!!!!!!!

It was early summer of 2003. I was pregnant with Gavin as I walked into Drug Emporium for miscellaneous odds and ends. As I walked in I noticed a bird flying around inside of the store. An employee saw me watching the bird and commented that they’d been trying to get it out all morning and afternoon. With bold confidence I informed her that I’d get it out for them and then started off in the direction of the bird. I have a very soft spot in my heart for birds and will go to great lengths to help them. The young girl looked at me like I was crazy and continued on her way probably thinking, “Whatevs, lady…” The bird landed on top of a glass cigarette case that was about 7 feet high. Not like I could just reach up and grab a wild bird even if I could reach up that high.

“GOD, PLEASE HELP ME GET THIS BIRD!!” I quietly whispered.

I was SURE that I was going to get this bird without any doubt in my mind. I just had no idea how to go about it. I’m not in the habit of carrying around pole nets in my purse. As I got closer to the glass case I raised my arms up at the bird. I must have scared it because it fluttered back and was now stuck between the wall and the case. As if I knew exactly what I was doing, I reached back and was able to grab just the edge of the young starling’s wing. The frightened bird struggled and resisted against me, but I refused to let go. Ever so gently I pulled the bird out from his predicament by his wing careful not to bend it in a direction it wasn’t meant to go. In less than a couple of minutes I had the starling in my hands, his head peeking out of my firm grasp with juvenile fuzz still on the top of his head. Largely pregnant, I walked past the checkout registers with a fuzzy headed bird in my hand. Several employees and customers stared at me dumbfounded wondering how in the heck I managed to do in literally a couple of minutes what they’d been trying to do all day!

Once back outside I released the bird from my grip and it instantly took flight. It landed on a nearby wall and looked back at me as if to say thank you before taking off into the horizon.

Initially I recalled this event from the perspective of approaching matters with bold and confident faith,

“GOD, PLEASE HEAL THIS BABY GIRL!!”

Am I SURE that God is going to heal Nora without any doubt in my mind? “Is my faith that strong?” I ask myself. There are days when it seems impossible, “HOW are you going to do this?” Hopelessly, I try to find the logic and potential resources just as I did with the starling. Often those don’t exist. But that can not and will not stop God! He faithfully provides just the right circumstances, and puts just the right people in our lives with pinpoint precision.

Now faith is being sure of what we hope for and certain of what we do not see.
(Hebrews 11:1)

Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.
(Mark 11:24)

As I recalled this story of the starling I began to see things with a “bird’s eye view”, so to speak. When we first started going to Children’s Hospital, I compared it to feeling like a trapped bird. I think it also holds true in initially finding yourself as the parent of a special needs child. I found myself empathizing with the fear that bird must have been faced with. One “wrong turn”, whether he chose it or not, and suddenly the bird found himself in an environment that was completely foreign to him. The endless sky was suddenly restricting. Flying frantically back and forth, there appeared to be no way out, no solution in sight. He trusted nothing and no one until suddenly he was physically pinned between a wall and a cabinet, his worst fears come true. How exactly like that bird I have felt!! Emotionally crushed. Hopeless and terrified. I sometimes don’t understand the love and wisdom in God’s mighty hand squeezing through the crack to extricate me. Out of fear I try to wriggle from his grasp, wanting to rely on my own solutions for solving these problems. But the more I relax and stop fighting the easier it is. God doesn’t have to pull so hard on my wings. I might spend the rest of my life behind this “cabinet”, but I have the faith and the hope that one day I will finally get out. As long as I am in His grip, I am safe. There will come that day for all of us, whether we were trapped behind a cabinet or not, that we are brought back outside into our natural environment where we were meant to be all along. Those hands will open introducing us to the glories of heaven as we take flight, cool wind in our face, free at last!

Trust in the LORD with all your heart and lean not on your own understanding.
(Proverbs 3:5)

The Lord will rescue me from every evil attack and will bring me safely to his heavenly kingdom. To him be glory for ever and ever. Amen.
(2 Timothy 4:18)

Nora’s heart rate has been registering between mid-130s to 160s and her breathing is much more relaxed!! (As is mine!!) This has been such a relief, such a HUGE answer to prayers!! I can’t thank you enough!!

“Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened.”
(Matthew 7:7-8)

Here is Nora trying out some new toys from Redwood! She was very interested in this mirror. When you touch the little chains that dangle across the mirror the frame lights up, it vibrates and plays music!

Thursday

Friday

It’s been a very surreal week–life unexpectedly interrupted by my uncle’s passing compounded with 2 nights at the hospital with Nornor. A week I won’t soon forget, yet wish I could somehow erase and rewrite. The piercing sorrow and the oppressive anxiety aspire to take center stage with reprehensible audacity. When I avert my gaze to God instead, I am able to see past all that is “wrong” in my human perspective. I begin to notice the graceful glow of beauty and hope.

One of Nora’s nurses wrote a piece about this as it pertains to Nora. She graciously shared it with me and has allowed me to share it here. She wrote this days before the loss of my uncle and Nora’s elevated heart rate / stay in the hospital, but how appropriate now more than ever:

Today’s devotion is taught by Nora Yusko. What an amazing teacher. Last night I had the privilege of spending time with her. She amazed me so. She is so fascinated about everything. She looks at her hands and fingers in awe. She looks at the colors in books and coos with the most innocent sounds of joy. She looks into my face as if to say, “Isn’t this so so wonderful?”

I began to realize how to pray. Lord, please make me more like Nora. She has things in her life, major things, that could have gone better but she does not look at those things. She looks for something, anything around her to enjoy. When you observe her it’s obvious praise and thanksgiving for something. We all have bad things that happened to us….but why do we make that our focus?

It’s what you look at that matters or you would not be looking at it. We have a choice. God said “fix your eyes on these things……..”

I felt Nora would have laughed at my thoughts with a squeal of advice,”silly Tracy, don’t you know the things that you can’t change should not make you miss what you have right now? Look at my hand! Isn’t it amazing?? Praise God……wow… He made this!!”

Lord, I pray that I would look at my grandchildren the way she looks at her hand. That every husband would look at his wife and every wife her husband in the same amazement. That as we read God’s Word we would stop and say, “Wow, He’s amazing!” meditating and staring into the reality of it all.

While I was still meditating about this in my bed this morning I saw Nora in a vision and she had a crown… a jeweled crown in her hand that sparked. Is that where her sparkle comes from? Does she see this now or will she see it one day? Is this why she is so resplendent? I could see her a little bigger, but all Nora as she is in her nature…. throwing that crown and then squealing with a chuckle as it flies into the air. I never saw that scripture in such a content. I always thought we would be so shocked at God’s goodness, not like what I was seeing. She is not shocked or fearful, she is amazed and wants to be herself, as she is right here, right now, this moment just God’s little girl.

===========

Thank you for that, Tracy!

Although tempting, we must not make our focus on all that is wrong. There is so much beauty just waiting to bring joy!

Today I find joy in the FACT that my Uncle has been gloriously received into the Kingdom of God. He left this earth doing what he loved, riding his bike on a beautiful spring afternoon. He will never know another moment of pain, or even the discomforts and restrictions of growing old. I find joy in imagining the blessed reunions that took place once he entered Eternity, and those blessed reunions that will take place for each of us when it is someday our turn. Can you imagine!!??

Today I find joy in Nora’s greatly improved heart rate. It is steadily getting lower and lower. Last check it was in the 140s with O2 sats on the very high 90s. I find joy in her sweet smile and her precious squeals, her huge, mighty purpose.

I give such thanks for each and every instance of joy especially during these trying times.

Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable if anything is excellent or praiseworthy think about such things. Whatever you have learned or received or heard from me, or seen in me put it into practice. And the God of peace will be with you.
(Phillipians 4:4-9)

“I missed you, sister!!!”

We are home! Nora was discharged from Children’s this morning with a very good report. Her latest echo has showed IMPROVEMENT in the left ventricular function (pause to really let that sink in). I am rendered speechless and amazed, once again, although I’m not sure why. I KNOW the power of our God!!! Nora’s head scan came back normal. All labs came back normal with only her thyroid levels being on the high side of normal. Her heart rate is still elevated into the 170s, but her doctors are confident we will be able to get it back down. As her heart rate is elevated when she is fussy, we are trying to eliminate her causes of fussiness. One of her big complaints is gas pains so we’ve decreased the calories of her milkies from 26 calories to 20 calories (which is the normal calorie) in the hopes that it will be easier to digest. She’s clearly gained enough weight now to where that isn’t so much of an issue anymore. Another fuss buster attempt is decreasing her Sildenefil dosage. One of the common side effects of this medication is headaches! Hopefully these measures will at least keep her heart rate out of the dangerous levels while we figure out how to get it back down to where it was.

“Mmmm. Milkies.”

“Is it time to go home yet?”

“Oh. I guess it’s time for an echocardiogram instead…”

“Oh, hi!”

One of Nora’s friends Robin J suggested the possibility of the recent Synagis shot being the cause of the elevated heart rate. We did mention that to the doctor. He said that certainly could be a possibility and definitely wouldn’t rule that out. Her last dosage was higher than previous instances because of her weight gain! Fortunately that was her last Synagis shot for the season!!

Another friend suggested low iron count as the culprit. We also brought that up but were reassured that her hemoglobin counts were all right where they should be.

Thank you all, so very very much for your prayers, your love and support, texts, voicemails, emails, FB comments and messages. Mom, Dad, Abby, Terri, Amber and everyone who offered to help us through these unplanned past 3 days, THANK YOU!!! YOU ALL ROCK!!!

Gavin and Greta’s message, “We miss you, Nora Rose!” sent from Amber to Mommy’s phone:

Nora’s message she sent back to them:

Before it’s Christmas again, I will go ahead and post pictures from Easter that I’ve been meaning to get up. There is so much I want to say, but if I don’t get some sleep here I won’t be doing me or anyone around me any favors!

The LORD is my light and my salvation whom shall I fear? The LORD is the stronghold of my life of whom shall I be afraid?
(Psalm 27:1)

Tomorrow is going to be an especially hard day for my family as we say goodbye to my Uncle Bill. Please keep us in your prayers, especially my Aunt Margie and Bill’s family and friends. ❤

Whatever you do, do well. For when you go to the grave, there will be no work or planning or knowledge or wisdom. I have observed something else under the sun. The fastest runner doesn’t always win the race, and the strongest warrior doesn’t always win the battle. The wise sometimes go hungry, and the skillful are not necessarily wealthy. And those who are educated don’t always lead successful lives. It is all decided by chance, by being in the right place at the right time. People can never predict when hard times might come. Like fish in a net or birds in a trap, people are caught by sudden tragedy.
(Ecclesiastes 9: 10-12 NLT)