What a sweet, sweet gorgeous day spent celebrating Miss Nora!

Nora and Oma got some cuddle time in.

I mentioned in the previous post – we will plan a party on a larger scale at a later date. Nora can’t wait to meet those of you who will be able to make it!

We sang “Happy Birthday” to her three times! She started fussing after the first round was over so we started up again… and then again. She loves being sung to!

Nora tasted a little bit of icing with “Uncle” Jay. She’s VERY intolerant of anything with texture so we had to be careful not to activate her gag reflex! Speech therapist is coming next week to help us work with that. Little Miss can’t just drink milkies forever!!

“This hat is kinda neat! I kinda like it!”

As we were singing to Nora this afternoon I was remembering another beautiful cake (created by the same super talented baker) that was cut in that very same room. The other cake was the gender reveal cake. By slicing into that cake, the pink inside revealed to us that I was carrying a baby girl. (You can see a video of it on Day 29) This was the day we gave her her name Nora Rose. At that point we were so uncertain and so sad at the thought of losing our baby. The statistics were terrifying. What a stark contrast the moods of these two occasions. If only I could have seen then what we have now! All praise, glory and honor to our Lord Jesus Christ!!! 🙂 🙂 🙂

We’ve had a busy weekend and were able to get out to do some fun things with the big kids. Friday afternoon I took the big kids out for lunch to Skyline and then on some errands with me. We laughed like heck at the “Goose Parking Only”

While we were in Kohl’s waiting to return a pair of shoes, Greta found a bow in her pocket. We dared Gavin to wear it in his hair which he did obligingly!

That evening we took them roller skating. Greta is getting pretty good on wheels! Gavin preferred watching or playing in the arcade.

It was HILARIOUS watching William act like he was out of control and about to fall all over the place. (At least I THINK he was acting? Hmmm?) I don’t know what was funnier–him or the people’s look of dismay/concern watching him.

After looking at the way things are on this earth, here’s what I’ve decided is the best way to live: Take care of yourself, have a good time, and make the most of whatever job you have for as long as God gives you life. And that’s about it. That’s the human lot. Yes, we should make the most of what God gives, both the bounty and the capacity to enjoy it, accepting what’s given and delighting in the work. It’s God’s gift! God deals out joy in the present, the now. It’s useless to brood over how long we might live. (Ecclesiastes 5:18-20 MSG)

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)

I will precede by saying Nora is fine, however my extended family is in deep need of prayer. My Uncle Bill lost his life this afternoon after he hit a deer on his motorcycle while traveling on the highway. Please specifically pray for my Aunt Margie (my Dad’s sister), her daughters, their families and all of Bill’s family and relatives and friends. We are all reminded through this of just how fragile life is–none of us knowing the day or the hour. I never thought that the last time I saw Bill it would be the last. No one did. The sound of his contageous laughter echoes in my mind and I am certain that he’s laughing right now with all of the wonders of heaven. It’s just excruciating for everyone who has been left behind. Bill, you will be very, very missed.

Just before I received the terrible news, the Easter Bunny was on his way into our house. I am ever so grateful for our dear friends Jen and Bryan (and Kelly too!!) for helping to keep some sort of normal here for the kids. Gavin and Greta had SOOO much fun dyeing Easter eggs with you! Thank you so much!

“For God loved the world so much that he gave his one and only Son, so that everyone who believes in him will not perish but have eternal life.”
(John 3:16 NLT)

Through Christ’s death and resurrection we are given the promise of new life. I give thanks and praise that this applies to all of us who accept Jesus as our Lord and Savior. I give thanks and praise that we WILL be reunited with our loved ones when our time is up on this earth, just as Bill was today. In the mean time I pray that the void left in the lives of everyone who knew and loved Bill will be filled by the Holy Spirit, the peace that surpasses all understanding.

The Lord is my shepherd, I lack nothing. He makes me lie down in green pastures, he leads me beside quiet waters, he refreshes my soul. He guides me along the right paths for his name’s sake. Even though I walk through the darkest valley, I will fear no evil, for you are with me; your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows. Surely your goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever.
(Psalm 23 NIV)

(Sorry for the confusion of having accidentally published this post before it was finished!)

Nora’s heart rate has fluctuated today. At its highest it was 201 (she was upset) and then down to 154 when she was sleeping. We’re trying to remain calm and patient as we pray for the lasix to work. We have been in contact with our cardiologist throughout the day. So far this is still just “wait and see”. Hoping and praying her little heart will settle down by tomorrow when we call with another report.

Last night as I was about to call it a night, I received an email from my cousin. Attached to the email was a photograph of a painting by our grandmother who passed away in December of 2010. It is reportedly one of her last paintings and was done in 1985.

There would have been no way for her to know how very significant those 3 varied brush strokes in the upper right of the composition would prove to be 28 years later to her then 12-year-old granddaughter. God is spaceless and timeless, knowing that someday I would get this blessed message from someone forever dear to me, “God is with you! Don’t worry!”

But you must not forget this one thing, dear friends: A day is like a thousand years to the Lord, and a thousand years is like a day.
(2 Peter 3:8 NLT)

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
(Matthew 6:34)

Beautiful moonset this morning

Beautiful baby in the baff this morning! It had been a couple days since her last bath. She’s starting to lose interest in them and needs to be constantly entertained. She’s no longer content to just float around. Bittersweet!!!

“Eyyy!! Get this thing away from me already!!!”

“You’re pretty cool, brudder!”

“Wh? Looks like it’s time for milkies!!”

“Thanks, Daddy!!!”

Nora had another good day. A few intermittent gas pains, but other than that she was squealy. Her heart rate is still registering pretty high. On the advice of our cardiologist, we’ve again increased the lasix dosage. There will hopefully be a change by Saturday. Please specifically pray for that!

That’s all for tonight. Must. Get. Rest!

“Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.”
(Deuteronomy 31:6)

Today had a rocky start for another reason unrelated to Nora, but that turned out to be no cause for alarm so I won’t elaborate. Only,”Thank you, God!!!” about that.

Nora has had a really really good day today. She wasn’t doing any uncomfortable grunting noises at all, very minimal fussing and in fact spent much of the day squealing as you may have seen on her FB page earlier today. Incase you missed it or would like to see it again:

Her heart rate is still lingering in the 170s and sometimes on into the 180s, but our cardiologist sounded pretty confident that lasix will fix it. If not, Nora has plenty of headroom to increase it further. Nora was put on this medication when she was about 5 lbs. so of course now at 14 lbs. 6 oz. it definitely would need to be boosted! While Nora isn’t presenting any symptoms of edema she IS taking in a whole lot more “milkies fluid” than her sweet little body is used to! This all seems to make much more sense after William and one of Nora’s nurses spoke with Dr. H. It could be that this other doctor we saw was just coming at it from the trisomy 18 angle. The problem with doing that is that every single child with trisomy 18 is very very different. It’s not fair to slap the “incompatible with life” label on them, sometimes even before they are even born and given the chance to prove otherwise! I don’t mean to imply that this other doctor was dismissive of Nora or inappropriate in any way. That wasn’t at all the case! But with each child being so different it’s almost impossible to go with a standard textbook treatment plan or course of action. There’s no such thing! I would also have to guess that with trisomy 18 being so rare there just isn’t a whole lot of experience available.

Another load lightener was the knowledge that Nora’s echocardiogram results aren’t as drastically changed as initially reported. We will revisit that again on April 4th for her follow up.

In the mean time, I am relying on God to pull us through this rough patch just as He has all the others. Nora is happy and content as ever — world record sweetness today and this evening. That’s reassuring past any medical reports or test results!!!

Napping in a sun spot this morning!

Sweet little toes peeking!!

Someone really sweet woke up!

Bouncing with Abby 🙂 (Thanks for this picture, Abby!)

Sister time! (Nora already checked her watch)

Thanks for praying for me, everyone! Mommy will keep you updated on me! She tells me how many people love me and all the nice things you say. I love all the hugs and kisses you’ve been sending thru Mommy! I sure feel LOVED!!!

Thank you for bringing me some Spring, my Sweet “anonymous” friend!!!

This was the KLOVE verse of the day:

For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever!
(2 Corinthians 4:17 NLT)

LOVE that reminder!!!!

I am in a much better place today than I was yesterday. Undoubtedly because of the droves of prayers going up on our behalf. All of the kind words in the comments and on Nora’s FB page, texts, emails and phone calls have brought me such solace. I know I can say the same for my other family members and friends who also read them. Thank you. I’ve tried replying to each of the posts on FB while Nora was napping this morning and now I’m having a hard time keeping up. If I haven’t responded personally, please know that we are reading each of your messages and we are ever so grateful for this outpouring of love and support. I’d mentioned yesterday to a friend that it is very easy to feel singled-out and alone during these times of uncertainty. Thank you for making us feel anything but!

{I am laying in bed as I update from my phone (as I usually do). I wish I could share with you the sweet little commotion that is going on downstairs right now. Nora is squealing such sweet little trills for her nurse. She sounds like a happy little bird! My heart swells with joy to hear those precious noises! Thank you, GOD!!!}

Nora had a good day today. Her heart rate is still elevated, but it wasn’t up in the 200s at all. Her oxygen saturation levels aren’t perfect but they’re decent. She ate more mL of milkies before 8:00 this morning than she would in a typical DAY just a month ago. When William spoke with our regular cardiologist this afternoon Dr. H was very pleased to hear that Nora was still eating so well. He seemed much more optimistic about the increased Lasix than yesterday’s cardiologist, but obviously still no guarantees. To hear that was definitely a breath of fresh air!!

I had a hair appointment today that I scheduled awhile back. Since I was starting to look like a vagrant (there’s only so much the braids can do) and Nora was in the safe loving hands of her day nurse with her Daddy close by, I decided to keep the appointment. The first trio of birds I saw brought an instant sea of tears. But then they started appearing almost with every mile I traveled.

With each sighting came a renewed sense of strength and reassurance. I wish I could have taken a picture of each and every series, but since I was driving I didn’t want to wind up on the 11:00 news. As I neared my exit I had to squeeze into a lane of traffic. I wound up behind this truck:

You might have to enlarge it because it doesn’t show up so clearly in the picture. There were three crosses etched into the dirt on the gate of this truck. A depiction of the crucifixion and the promise of new and eternal life. I was just contemplating that this morning, my cheeks streaked with tears – not from sadness, but joy. No matter what happens here on this earth, we have a beautiful Forever to look forward to. I KNOW that and I’m so incredibly thankful for that.

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