Life is Fragile

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.

20130331-001924.jpg

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!
20130331-002007.jpg

20130331-002025.jpg

20130331-002036.jpg

20130331-002437.jpg

20130331-002057.jpg

20130331-002103.jpg

20130331-002638.jpg

20130331-002558.jpg

20130331-002228.jpg

“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)

Three!

(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.

20130329-225104.jpg

20130329-225301.jpg

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.

20130329-230200.jpg

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!”

20130329-233159.jpg

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)

Heart Rate

Beautiful moonset this morning
20130329-000658.jpg

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!!!
20130329-000925.jpg

20130329-000725.jpg

20130329-000732.jpg

20130329-000738.jpg
“Eyyy!! Get this thing away from me already!!!”
20130329-000744.jpg

“You’re pretty cool, brudder!”
20130329-001053.jpg

“Wh? Looks like it’s time for milkies!!”
20130329-001100.jpg

“Thanks, Daddy!!!”
20130329-000811.jpg

20130329-001319.jpg

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)

Squealy Baby

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!
20130327-234134.jpg

Sweet little toes peeking!!
20130327-234141.jpg

Someone really sweet woke up!
20130327-234146.jpg

Bouncing with Abby :) (Thanks for this picture, Abby!)
20130327-234655.jpg

Sister time! (Nora already checked her watch)
20130327-234733.jpg

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!!!
20130327-234742.jpg

Thank you for bringing me some Spring, my Sweet “anonymous” friend!!!
20130327-234715.jpg

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!!!!

Update on Nora

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!!

20130326-224142.jpg

20130326-224149.jpg

20130326-224157.jpg

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.
20130326-232121.jpg
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:

20130326-225507.jpg

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.

20130326-231959.jpg

20130326-232009.jpg

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

Nora’s Heart

I sat in the window earlier watching little tiny snowflakes land on the glass then quickly melting into a dot of water. I was reminded of how our own lives are just as beautiful, unique, fragile and short. As I sat there I happened to overhear Greta praying out loud for her little sister. What sweet, precious unprompted words she spoke as if talking to a friend. “… In your name, I pray,” she concluded before running off to go find her brother.

It’s been a very draining day, to say the least. We were told to bring Nora in for an assessment if her heart rate got above 200.

20130325-223309.jpg

20130325-223315.jpg

We had a sweet nap together on the couch this morning and I tested her when she woke up. It hovered in the 180s and climbed on up to 200, so off we went. Fortunately we had our nurse here today and she was able to ride in the back with Nornor while I drove so William didn’t have to come all the way home and could just meet us at the hospital.

Nora had an EKG and an echocardiogram. It was determined that the function of her left ventricle has declined. A healthy heart is around 55. Nora’s last echo showed 48, which wasn’t bad. Today it was in the 30s. They’ve increased her Lasix dosage which hopefully will help, but she isn’t really showing any symptoms of edema (water retention) which is what the Lasix is intended to prevent. If she were exhibiting symptoms of edema then that would definitely indicate the need to increase the Lasix. The other theory is that Nora is outgrowing the capability of her heart, in which case there will be a steady decline. To hear that possibility was like a knife in my gut. It’s been so easy for quite awhile now to look right past her oxygen tubing and imagine that she’s just a typical healthy baby without a whole list of statistics breathing down our necks. Life has been so good for so long… How could it ever be otherwise!!???

We are so comforted and held up by all of your kind words on the Praying for Nora Facebook page! If you haven’t already joined, I encourage you to do so. Urgent prayer requests and updates on emergencies are easier to post there quickly as opposed to directly on the blog. I was so very touched to see all of the new additions today. It is incredibly encouraging to know that Nora has THAT MANY people pulling and praying for her. Thank you so much for your prayers today. They were definitely felt!

I am EXHAUSTED and will leave you with this song I took special note of on the radio this afternoon. What a great reminder during these chaotic times:

ALREADY THERE
Casting Crowns

From where I’m standing
Lord, it’s so hard for me to see
Where this is going
And where You’re leading me

I wish I knew how
All my fears and all my questions
Are going to play out
In a world I can’t control

When I’m lost in the mystery
To You my future is a memory

‘Cause You’re already there
You’re already there
Standing at the end of my life
Waiting on the other side
And You’re already there
You’re already there

From where You’re standing
Lord, You see a grand design
That You imagined
When You breathed me into life

And all the chaos
Comes together in Your hands
Like a masterpiece
Of Your picture perfect plan

When I’m lost in the mystery
To You my future is a memory

One day I’ll stand before You
And look back on the life I’ve lived
I can’t wait to enjoy the view
And see how all the pieces fit

One day I’ll stand before You
And look back on the life I’ve lived
‘Cause You’re already there
You’re already there

When I’m lost in the mystery
To You my future is a memory
‘Cause You’re already there
You’re already there

Standing at the end of my life
Waiting on the other side
And You’re already there
You’re already there



And of course some sweet pictures:

20130325-223458.jpg

20130325-223513.jpg

20130325-223532.jpg

20130325-223546.jpg

20130325-223552.jpg

Cast all your anxiety on him because he cares for you. (1 Peter 5:7 NIV)

Weekend

20130324-233814.jpg

20130324-233824.jpg

Lazy laid back weekend here at our house. The only thing really to report is that Nora’s heart rate has been pretty elevated (in the 170s). Of course this stuff always come to light during the night and/or on the weekends. Based on how she is doing otherwise, we didn’t think it deemed a trip to the emergency room. She’s still eating great, squealing and for the most part happy unless she’s got a belly full of air. The plan is to have her seen by the pediatrician hopefully tomorrow.

I’ve been pretty anxious about this and haven’t felt like mulling over it with anyone — which is why those of you closest to me might be wondering why you’re just now finding out about it through the blog. It’s these types of things that seem to roll out the red carpet for satan, setting him up in a nice posh hotel room in the middle of my mind. It’s a real effort sometimes to stay focused on God and doesn’t come as naturally when something might be wrong. Basically, I start feeling sorry for myself, wishing for “normal” and it’s all downhill from there.

Not that I discounted or didn’t believe in God, but I used to think, “If God is so mighty and powerful, then why can’t He show himself to us? Why can’t He be here in some tangible form? Why do we have to rely on our faith?” Today was one of those days that I really could have benefited from a good hard cry on God’s shoulder, with his arms physically wrapped around me, whispering in my ear that everything is going to be okay. I never stopped to imagine that God is protecting us by not physically revealing Himself to us. Could it be that God is THAT powerful, THAT mighty, THAT intense that to experience Him in the physical form would kill us?

Then Moses said, “Now show me your glory.” And the Lord said, “I will cause all my goodness to pass in front of you, and I will proclaim my name, the Lord, in your presence. I will have mercy on whom I will have mercy, and I will have compassion on whom I will have compassion. But,” he said, “you cannot see my face, for no one may see me and live.” (Exodus 33:18-20 NIV)

God is the same God now as He was with Moses and He is the same God He always will be. I am unable to see Him face to face without dying. Instead I have my faith. I also have the benefit of God speaking to me and comforting me through others.

This afternoon I was laying on the bed thinking about everything going on here. “God, I could really use a hug or a loving touch from You right now,” I prayed. I needed His comfort and reassurance that He’s still right here with me. Almost immediately, in walks my hubzbind. We’ve both been a little on edge. “Want me to cuddle you?” He asked despite the fact he was getting ready to take Greta out for a Daddy-Daughter date. As he laid next to me rubbing my shoulders and back tears welled up in my eyes. He is SOOO sensitive and receptive to the Holy Spirit. God responded to my prayer through my husband and also sent along the reminder that no amount of worrying is going to make things better for Nora. The best thing we can do for Nora is love her and TRUST GOD. That will do immeasurably more than any medicine or medical treatment ever possibly could.

Overall, Nora had a good day today! She was happy and ate very well. Just before we went up for the night, her nurse hooked her up to the pulseox machine. Her heart rate was 148 and her oxygen levels were at 100! That information will lend itself to a good night’s rest, I hope! Thank you in advance for your prayers!!!!!!!!!!

Trust in the Lord with all your heart and lean not on your own understanding;
in all your ways submit to him, and he will make your paths straight.
Do not be wise in your own eyes; fear the Lord and shun evil.
(Proverbs 3:5-7)

Wednesday Thru Friday

Wednesday

This baby is an eating machine!!! She’s been downing entire bottles like its nobody’s business and still only about 2 hours between feedings. With the larger bottles I added a higher flow nipple. I’d always kept the low flows on because I was so afraid that she was going to choke! Come to find out she does perfectly fine with the higher flow and now she’s not having to exert as much energy to get the milkies!!! Duh, Mommy!!! Now watch she’s going to start gaining a pound a week. Poor baby’s Mom don’t know nuthn bout nuthn!!!

20130322-123914.jpg

She crushes these bottles on her forehead and then throws them over her shoulder after she chugs them. ;)
20130322-123921.jpg

One of my many sightings of 3 birds today!
20130322-124005.jpg

I also saw my 3 turkeys again!!!
20130322-133229.jpg

Sisterly love exchanged before bed time.
20130322-124019.jpg

Thursday

“Mmmehhm. *smack smack smack*”
20130322-124251.jpg

“Wwwww!??? What TIME is it!!!????”
20130322-124309.jpg

Big stretches!!
20130322-124316.jpg

“Would you look at my fat little cheeks? I’m SO cute I pinch my own cheeks!”
20130322-124323.jpg

“You’re probably wondering why I’m in a different outfit now.”
20130322-124921.jpg
“That’s cuz it was time for puking earlier. Mommy held my hair back for me. I feel much better now.”
20130322-124928.jpg
“Aaaaaaaaaaaaaaaaaaaaa!!!!!!!!!!!!!!!!!!”
20130322-125148.jpg

“Mommy tested me out in the Baby Björn. I’m a little uncertain about that whole get up. It is fun to walk around to see new things in the house though! Maybe I’ll like it better outside. Bye for now! I love you!”
20130322-125157.jpg

Lots of 3 birds this evening! There were 3 doves out on our deck at one point. Missed that awesome photo op! That totally took my breath away.
20130322-124951.jpg

Friday

I am pretty sure I’ve had just about enough of the germs already. Last time I checked, anyway. “I feel like I’m going to puke” is not one of the top 10 things I was hoping to hear out of Greta’s mouth this morning when I went in to wake her up for school. Apart from feeding my family Germ-X soup, I don’t even know what to do here anymore.

No fever and no actual puke. Hmmmm… Sick? or hooky? I had Greta come down to breakfast and was dismayed when she turned it down. If she were trying to pull a Ferris Bueller on me I didn’t think she’d get that sophisticated as to turn down her favorite meal. So back upstairs she went. She’s used up all of her sick days and would need to get a note from the doctor in order to stay home. I gave her another opportunity to fess up, “If you’re not sick they will know at the doctor’s office and then Mommy is going to be FUMING!!” I also mentioned that there was going to be no sick nest in front of the TV this time. If she’s sick then she needs to sleep. She still insisted that she didn’t feel good. I hurriedly got Gavin out the door to the bus stop after a brief argument about whether or not it was cold out because he didn’t want to wear his coat. Sorry, but 22°F (-5.5°C) is not a matter of opinion, kid! (EVEN THOUGH IT IS SUPPOSED TO BE SPRING!!!!!)

A few minutes later I went up to check on Greta and she was happily reading on her bed with her feet propped up on the wall, “Look, Mommy! I’m already on page 47!!!”

“That’s awesome! How about we get you on up to school. You don’t seem very sick to me and you still don’t have a fever. That definitely would have showed up by now if you were going to be sick! (*wink*)”

She agreed that she was feeling better and continued getting ready for school and also ate her breakfast perfectly fine. In one last ditch effort to stay home she asked if she could just watch a movie first. There’s that rat I smelled…

20130322-231349.jpg
(or was that just Notorious P.I.G., Piggy Smalls??)

I bundled up Nora and we drove Greta to school. I was too entirely relieved to be mad at her! Thank you, God for miraculous healing, hooky attempts, what ever that was there!!! No more germs, PLLLEEEEEAAAAASE!!!!

20130322-232509.jpg

Fortunately, there were no calls from school throughout the day!!

20130322-232523.jpg

Greta arrived home from school happy and in good spirits, obviously not at all sick! What an absolute relief!!!

20130322-232534.jpg
“Captain Hooky”

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)

Silly Fingers

Another beautiful sunrise! My 3 birds are in the top left of the v-shaped tree on the left! :)
20130319-225749.jpg

Satisfy us in the morning with your unfailing love, that we may sing for joy and be glad all our days.
(Psalm 90:14 NIV)

I’ll let Nora tell you about her busy day:

Oh, tank you very much, Mommy! Yeah. I had a busy day today, alright! I had physical therapy first thing. I really like therapy. They always come up with some fun things for me to do! Today I got to play with some pencil grippers. I know that sounds strange but I didn’t think so at all! I got to wear them on my fat little fingers and they were soooo interesting!
20130319-225759.jpg
Yeah, let me get a closer look at things here:
20130319-225807.jpg
That’s kinda funny, huh!
20130319-225816.jpg
I think I could place orders with these things.
“Um, I’d like TWO milkies please?! TWO.”
20130319-225826.jpg

I was worn out after therapy!
20130319-232348.jpg

I got my last Synagis shot this afternoon!! I wasn’t at all happy about someone poking my fat little leggie with a needle and I don’t understand it when Mommy tries to explain it. I cried a lot until I got myself all sleepy again. Before my shot they weighed me. I’m a 14 lb. 4 oz. big girl if you can believe that!!!

What else is hard to believe is that when I woke up from my nap I was the happiest, squealy-est little thing anyone’s ever seen. A much better state than when went down! I just made everyone smile all day. I’m THAT sweet!!

20130319-225838.jpg

Upper GI Results

Nora’s G.I. appointment went extremely well! We couldn’t have asked for it to have gone better. We were delayed a little bit because of some technical difficulties with their X-ray computers, but fortunately were still able to be seen!

Nora hadn’t eaten in 4+ hours and was hungry for some delicious barium! They put an adorable little peach hospital gown on her and she was completely 100% cooperative. She’ll lay on a cold hard surface shifted sideways and drink barium, which looks and probably tastes like thick chalk water, but don’t you DARE try and sneak yogurt into her bottle for probiotics!

20130318-231238.jpg

20130318-231247.jpg

Based on what the radiologist was able to see, there are no outward abnormalities!! Thank You, God!!!

“Oh, good! We get to go home! Did you get any barium bottles to go? Those are delicious!!!”
20130318-231314.jpg

“Oh hi, sister!
20130318-231322.jpg

“Did you see me up in those top pictures? See how big I am?
20130318-231407.jpg

“And look at me here! Look how cute I am!”
20130318-231418.jpg

20130318-231429.jpg

That my heart may sing your praises and not be silent. Lord my God, I will praise you forever.
(Psalm 30:12)