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!!




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)

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.



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:

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:






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




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


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!!!


She crushes these bottles on her forehead and then throws them over her shoulder after she chugs them. 😉

One of my many sightings of 3 birds today!

I also saw my 3 turkeys again!!!

Sisterly love exchanged before bed time.


“Mmmehhm. *smack smack smack*”

“Wwwww!??? What TIME is it!!!????”

Big stretches!!

“Would you look at my fat little cheeks? I’m SO cute I pinch my own cheeks!”

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

“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!”

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.


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…

(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!!!!


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


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

“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)

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!



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!!!”

“Oh hi, sister!

“Did you see me up in those top pictures? See how big I am?

“And look at me here! Look how cute I am!”


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



Went on a beautiful date-hike with my hubzbind along the creek and through the woods behind our house. I’m so glad we did that. We can’t wait to all go down as a family once the weather figures out that it is actually March and not January!! We’ve got the Baby Björn carrier dusted off and all ready for Norns!



The trees along the edge of the creek are incredibly beautiful.
I am reminded to be like these trees:

Blessed is the one who trusts in the Lord, whose confidence is in him. They will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit.
(Jeremiah 17:7, 8 NIV)

Earlier in the day William and I went to Target to get new bottles for Nora and a couple of other things. Yes, Nora seems to be outgrowing her little bottles and needs the next size up!!! She’s eating a TON lately, so we are following her lead and giving her more volume. (“Pump up the volume! Pump up the volume! Dance, dance!” she says.) She takes it down like it’s nobody’s business! Anyway, as we were checking out, the cashier handed me a $10 register coupon for milkies. I was reminded that we needed more milkies!! William offered to go get the car while I went back in to make another purchase. I also remembered that we needed more diapers so I grabbed those too. I did a quick assessment of the checkout lanes and chose the one that seemed fastest. A couple I had seen earlier in the store happened to be in front of me. I recognized her from Facebook and know we must have met somewhere before! We said hello again. Marlene reintroduced herself and her husband and asked how Nora was doing. We talked a little bit about Nora and the blog before it was my turn to check out. It was then that Marlene and her husband told me that they wanted to pay for my (Nornor’s) things. (!!!!!) I smiled and graciously allowed them to bless me. I’ve seen how God has put me in the right place at the right time to be a blessing to others, but now here He was putting me in the ideal place and time to be on the receiving end and it all started with a register coupon! I got a little teary and emotional over that thought and also because there was no way Marlene could have known about my little random, anonymous act of kindness toward a stranger just the day before!! I was nudged so “loudly” by the Holy Spirit that there was no way I could ignore it. The only reason I even bring that up is to prove:

Give, and it will be given to you. A good measure, pressed down, shaken together and running over, will be poured into your lap. For with the measure you use, it will be measured to you.
(Luke 6:38 NIV)

God is absolutely completely amazing and that is just that. Thank you, Marlene and Dan for listening to your nudge. You too will be blessed!!!


We have an 11 month old little leprechaun on our hands today! I’m so incredibly thankful for the gift of this perfect little girl. To think there was a time when we weren’t sure if we’d even get to bring her home. Wow, God. Thank you, thank you, thank you!!!





Thanks be to God for his indescribable gift!
(2 Corinthians 9:15)

The Lord is my strength and my shield; my heart trusts in him, and he helps me. My heart leaps for joy, and with my song I praise him.
(Psalm 28:7)

Nora is having an upper G.I. done tomorrow morning. It’s just exploratory to ensure everything is working as it should be. Please pray that goes well and that Nora tolerates her barium bottle as well as she did for her swallow study way back when! 🙂 (I think that’s how they’re doing this — ?)

Busy Fun


Gavin made it back to school for a single day this week. (They’re off school Friday.) It was so strange not having one of them down in the “sick nest”. I was on the verge of getting up to go check on someone all day long!!

Gettin my baff on!

Bounce wit me, bounce wit me!


What a pretty morning. I couldn’t help but smile back at God as I looked out the window.




The big kids and I had a busy day! They’ve spent enough time cooped up in the house so we decided to get out. First stop was Daddy’s office. We picked him up and went to lunch up the street.

Throwing salt over your shoulder is good luck. Throwing salt over your shoulder and into someone’s hair is bad luck.

We dropped William off at his office and headed across town to visit Papa at his office. We were several many miles away when William realized he’d left his drink in my car and texted me to see if I’d bring it back to him. My response, “Awww!!” and attached picture:
Poor hubzbind with the mean Dr. Pepper guzzling wife (who was at a red light)!!

We had a nice visit with Papa. I always have visions of a wispy-headed little toddler boy running as fast as his little legs could carry him to go visit his Best Buddy in his office at the end of the hallway. Little toddler boy is going to be 10 in August. My, how time just flies right on by!

The next stop was to a pottery place where you paint your own pieces and then they fire them for you. (You’re FIRED!!!!!!!!!!!”)

Greta chose a kitty cat to paint in memory of Patches.

Gavin chose a football helmet bank that he painted as a Bengal’s helmet.

I made something for Nora’s first birthday next month. Shhh! It’s a secret!

We got this picture texted to us from Nornor and Abby while we were painting:

We were very excited to get back home and squeeze her!!

Here is another song from her Smelly album called “What Time Is It” She wrote this song about her affinity for milks. She was inspired to write it while looking at her watch this morning. She hopes you like it!

And God is able to bless you abundantly, so that in all things at all times, having all that you need, you will abound in every good work.
(2 Corinthians 9:8)


Nora and I had a nice relaxing morning just laying around, cuddling, and of course a baff.




I was so excited to get out a new toy for Nora that is on loan from Aunt Sarah. This activity center has been sitting upstairs from practically the moment I found out I was pregnant. After we received Nora’s diagnosis I couldn’t bear to look at any of the baby gear. It was a searing reminder of what was “supposed to be” and I was influenced by the notion that she’d probably never get to use any of it.

It was such a joy to place her in that little seat today. Her eyes lit up at all the fun new things surrounding her.

As if that weren’t enough excitement… Nora got “whipped” in physical therapy this afternoon!! (and now hopefully the proceeding pictures will show up to explain!!!)

“May I have some more, please?”

We revisited the rice cereal again, but Nora got all gaggy and puked up half of her bottle and ruined an outfit. We wanted to determine if it was the taste or the texture that she was having a problem with. After a couple of well-received squirts of whip cream, we determined that it was the texture of the cereal she wasn’t so crazy about. The whip cream was delicious!!! We placed it on HER hand, as opposed to a spoon so she could be the one to put it in her mouth. She readily and regularly puts her hands in her mouth.

Much to Nora’s delight, we have now added whip cream to our list of therapeutic strategies!

Gavin enjoyed another day off school. He’s completely better. Were it not for doctor’s orders, I’d have sent him back today. He has to be on the antibiotics for 24 hours before returning to school, so home he stayed!

We assisted Nora in making her very first music video, which she would like to debut here on the blog. From her latest album Smelly we would like to present “I’m Kinda Stinky*

* We don’t mean “stinky” in a bad way! Nora “stinks” delicious!!!!!


Snowflakes! 🙂

I thank Christ Jesus our Lord, who has given me strength, that he considered me trustworthy, appointing me to his service.
(1 Timothy 1:12)

Big Baby!

“Time to wake up and be sweet!”

Nora had a record day of eating today! Her usual intakes are around 600 mL (give or take) per day, maybe 700 on a really good day. Today she drank 940 mL! The dietician visited today with her scale and this sweet little chunker chunk weighs THIRTEEN POUNDS, TWELVE OUNCES!!! She’s getting to be such a big, big girl and getting closer and closer to the typical growth pattern!


Gavin is definitely on the mend, but complaints of neck pain and headaches with a fever set off some shrill alarms after I googled those symptoms. He hasn’t had the fever since Monday evening but the nurse I spoke with at the pediatrician’s office suggested I bring him in to be seen just to be on the safe side.

It was noted that his throat was a little red, but Gavin insisted that it didn’t really hurt too much. The doctor decided to do a strep test just to rule that out as a possibility. There were no other outward symptoms to be alarmed about. His sore neck could have been from sleeping on it wrong or straining it somehow. (snowball fight?)

While we were waiting for the results of the strep test, Gavin and I were playing around with a photo app on my phone. This is one of our creations that we thought was particularly hilarious. He didn’t want his picture taken, so we had no choice but to turn his hand into a face:


Our silly interlude was interrupted with the announcement of a POSITIVE strep test!! I was completely taken aback with that news, but relieved that it was something treatable! Another positive is that strep is extremely unlikely in infants. Still being extra careful though.

Gavin is being pumped up with “delicious” bubblegum flavored amoxicillin and is able to return to school on Thursday.

Later, back at home Greta summoned me to the kitchen to see something(s) very cool. Maybe there was a third one nearby! 😉


“Um… Excuse me… It looks like it might be time for milks.”

“Did you hear me??”

Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.
(James 1:17)

Joyful in Hope

Someone is busy getting ready for Easter!



Nora made a bunny hat in therapy this morning. Stickers on her little fingers are really quite fascinating! She was sooo cute!!!


A baff was in order after all that hard work!



Gavin seems to be faring better than I had expected after the series of fever-induced night terrors that he went through last night. It was impossible to wake him while he was SCREAMING and carrying on about pine trees and carnivals in his bedroom! He had very little recollection of any of it this morning. :/ He has a low fever and a bit of congestion, but there has been no puking. This is something altogether different than what Greta had. He’s eating well and staying hydrated, so hopefully this one will be out of here quickly!!

I can’t thank you enough for your prayers!!

Be joyful in hope, patient in affliction, faithful in prayer.
(Romans 12:12)