Crossing the river

Nora’s heart rate was elevated again early, early this morning and she may have been having some heart spasms. After consulting with her cardiologist later in the morning we opted to bring her in to the ER for assessment. She’s also still having lots of belly issues that are probably being aggravated by the antibiotic.

Just to make sure there wasn’t anything going on with her digestive tract, they did X-rays of her abdomen. That all looked normal, which kind of surprised me. I almost expected them to report back that there was a fanged, tentacled, gastastic monster camping out in there!

Her EKG results didn’t show anything out of whack either.

On the advice of our cardiologist by phone we had them do some blood work to see for sure if there were any bacterial infections going on. We hated to get her poked and prodded, but it was a necessary evil. The first attempt didn’t take – grrrrrrrrrrr – so they had to stick her TWICE. Fortunately the second time went smoothly.

We really were not sure what to expect, but were delighted when a very shorter than anticipated time later the doctor came back and told us that her labs were all clear!! The only thing that needed to be treated was her fever which was probably brought on by her cold. We could do that at home with Tylenol. The fever, undoubtedly was causing the tachycardia.

While we were at the hospital she never had any drastic drops in her heart rate to indicate any heart spasms, but if that had been going on earlier, the fact that she was able to bring it right back up was reassuring and doesn’t give too much cause for alarm.

Once we were back home, Nora rested peacefully.

While she and I were resting on the floor, a sweet and special big sister snuck in with a rose for us. We know it was from her because there was a note taped to it that said, “From Greta” She sure is sweet!

Beautiful reflection of the sunset in the northeastern sky ~

Goodnight, Brudder!

Goodnight, sister!

I am blissfully thankful to be writing this from the comfort of my own bed, being serenaded by a distant train whistle instead of alarms and beeping while shivering on a plastic fold out couch. Nora is in the loving care of her night nurse in her familiar living room / bedroom, free of any leads and wires. Please, please, God, let this be the end of these hospital episodes for awhile!!

Thank you so very much for all of your prayers today, and for your comforting words. We were so very touched and moved to tears at this outpouring of love from so many people! I’ve wondered what it must look like if you could physically see all of the prayers going up for Nora–how beautiful that must be.

I’m off to Sleeptown, USA. Now boarding….

“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”
(Matthew 11:28-30 NIV)

Nora did not have a good night last night, which continued on into the day. Belly troubles were her main complaint — prune juice not doing its job. She’s also had a lot of rattling in her chest and sinuses. Two of Nora’s nurses were able to hear some wheezing in her lungs but then it would go away when she was repositioned. To add to our worries, Nora was weighing in at 15 lbs. – which was a drastic drop from the 16 lbs. 6 oz. she weighed in at with her dietician on the 30th of last month. I know there can be a discrepency from scale to scale, so I immediately called Nora’s dietician who was ever so gracious to drop what ever it was that she was doing to come all the way over here with her trusty scale. On her scale, Nora weighed 16 lbs. 2 oz. There was still a 4 oz. loss, but that could be explained by her cold(s) and was not the cause for alarm that an entire pound would be! That was such a huge, huge relief. Thank you, thank you, Susan!!

We decided it would be best to have Dr. B. take a look at Nora and get his opinion, so Nora’s nurse and I packed up and headed out with William on his way to meet us there. At one point on our way there it was as if a trio of birds were flying along with the car. My eyes welled up with tears. I saw so many instances of the three birds that it was far past any kind of coincidence.

Dr. B. agreed that Nora sounded rattly and it was hard to get a good listen to her lungs with all of the mucus mayhem. The plan of attack was to get her started on an antibiotic incase she had something going on with her ears, as well as her lungs. He then sent us over to Children’s Outpatient for a chest x-ray. Despite Nora’s discomfort and the impending possibility of pneumonia, we were feeling incredibly blessed and thankful. How lucky were we?! We had a 2:20 appointment 20 minutes away from our house. We were immediately seen by the doctor, then sent across the street to another top notch facility for x-rays, on our way home by 4:00, and then a diagnosis of NO PNEUMONIA by 5:30. In William’s words, “Please don’t ever let us take this for granted!”

Nora seems to be a little more comfortable this evening and hopefully she will get some much needed rest throughout the night. Poor sweet girl!!!

I am perpetually grateful, thankful and blessed for all of your prayers today! Your texts, comments, and messages really pulled me through this day.

“I’ve picked you. I haven’t dropped you.’ Don’t panic. I’m with you. There’s no need to fear for I’m your God. I’ll give you strength. I’ll help you. I’ll hold you steady, keep a firm grip on you. (Isaiah 41:10 MSG)

“Oh hi! It’s me, Norns! I’m just enjoying some breakfast milkies on my morning jog with Mommy!”

“We had a nice jog, but Mommy really needs to step it up a pace.”

“It’s hard work being Mommy’s coach.”

Wednesday

“Here we go on another jog!”

“Mommy did a little bit better. This time I decided she’d be alright on her own, so I took the opportunity to get a little napskies in. Aaah, this weather sure is nice!!!”

“Here I am working with some things in physical therapy. I’m learning how to press this big red button. When I do my toy lights up. This will teach me cause and effect. I’m hoping to get a job somewhere doing this, maybe at a bank, or a sign company? Must work on my résumé…”

“Yeah. Will someone bring me a milks?”

For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.
(Psalm 139:13, 14 NIV)

===========

Nora’s cold is still lingering – going on Day 10 now. There is still lots of drainage which triggers the gags which triggers the pukes. And of course the “never ending” belly troubles. We were giving her 30 mL of prune juice before each feed, but since her cold came about, that was a guaranteed puking episode. We’ve been adding 10 mL of juice to each bottle without her noticing and I’ve also introduced her to prune baby food. Just not sure of how much is enough. We’ve been up with her for much of the night with lots of belly troubles. It’s so sad and frustrating not to be able to help her when she’s hurting. I hope and pray she outgrows these issues someday!

I found this picture on William’s phone of Nora signing something. Hmmm…

I was delightfully surprised to receive breakfast & kids in bed. They made me eggs, goetta and toast with coffee and orange juice!

This was my dessert! She is completely delicious and I ate her right up!

After that – Nora and I had a nice long relaxing Mother’s Day baff.

“Diss water is really kinda nice!!”

Then we got all dressed up to go to Uncle Joe & Uncle Dustin’s house for a Mother’s Day party. A beautiful sunny day will require pretty sunglasses!

Nora really liked listening to Oma (her Great-Grandmother) play the harmonica. She got disgruntled when the music stopped!

Couch o’ Mother’s (and 2 tinies)

With only one “Pull Over for Pukies” we were finally back home in our familiar living room. Next time William won’t drink so many gin & tonics!! (I’m kidding – lest someone reports us!)

We love kissy-smiles!!!!

A Super baby girl, a couple of Super big kids, and an awesome Super hunzbind made for an absolutely Super Mother’s Day! To think there was a time when I wasn’t sure if I’d get to celebrate ANY Mother’s Days with Nora, here I am celebrating my second with her! Thank you, God!!!

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.
(Ephesians 3:20, 21 NIV)

Monday

For great is your love, higher than the heavens; your faithfulness reaches to the skies.
(Psalm 108:4 NIV)

Saturday

“Oh hi! Today looks like a nice day!”

“It’s cold and rainy out, but I’m all cozy in my nest!”

“People feed me delicious carrots!”

“WWWAAAIT. A. MINUTE… What time is it????”

(checking)

“It’s cuddle time with Mommy!!!”

“Happy Mother’s Day, Mommy!”

“From your upside down baby cakes!”

back to Friday…

I’m glad this week is over. Since Monday it’s felt like I’ve been constantly dodging and swerving from stop sticks being thrown out in front of me. Thursday morning’s soundtrack went something like this. If anything could have gone “wrong”, it did. Any one of the events by themselves would have been a completely valid excuse for missing Bible study.

Sometimes Nora stays asleep while I’m getting the big kids off to school–this day, of course, she did not. As she was expressing her utmost displeasure about the situation at hand I noticed the gauge on her oxygen concentrator was malfunctioning. I hooked her up to a portable tank, checked her sats (which were fine), scrambled some eggs, fixed a bottle, brushed and fixed kids’ hair, fed Nora, kissed the kids and saw them out the door, sucked some boogies, made a phone call to get the oxygen concentrator looked at / fixed, peeked out the window at the kids up at the bus stop and then attempted to get a shower for myself and a bath for Nora who was completely encrusted in boogies. Ordinarily I would forgo the shower as I was fortunate to have gotten one the day before. However my hair looked like I had run Crisco through it. It was actually the infant massage oil that became acquainted with my hair from my hands while repositioning my bangs out of my face throughout the day. So same difference. After a two-minute shower it was Nora’s turn. I took my time with her and gently washed her sweet hair and face. I even let her float around in the jets for a couple of minutes before we had to get out. I gently placed her up on the clean towel I had neatly laid out for her which was her cue to puke all over the place. I put the stopper back down in the tub with my foot and quickly re-immersed her and rinsed her off. I laid out another towel from the nearby pile and attempted to get her out again. Puke All Over the Place Part 2. “I…. Feel like… I’ve been here…. And done this before…” It was then that I started laughing because it was so obvious that satan did NOT want me going to Bible study at 9:30!

“This must be a really, really good session!!!!!” I said out loud through gritted teeth.

Eventually I managed to get Nora out of the tub, dried off, moisturized and dressed. I was then able to get dressed in a random outfit in .8 seconds in response to an assertive knock at the front door. The next 20 minutes were spent running up and down the steps between Nora, getting myself ready, explaining what was wrong with the oxygen concentrator, locating my missing Bible study book, signing in Nora’s nurse, and swiping on some mascara. I now had 5 minutes to get to Bible study that was 15 minutes away. I kissed Nora, said goodbye to the nurse, grabbed my coffee and raced out the door. Go! Go! Go! Go!

I was making great time for about 5 minutes until I encountered a slowly moving farm combine taking up both sides of the road.

My speedometer barely registered at 15 mph. Might as well kick my feet up on the dashboard, read the newspaper, put the seat back and take a nap, walk along next to the car for exercise when I woke up… Through my sarcastic thoughts I smiled. This one might not have been so satan-inspired. As I was walking out the door Nora’s sweet nurse said she’d say a prayer I got to Bible study safely. 10-15 mph is about as safe as it gets.

Finally, eventually and amazingly I managed to get to Bible study! I was amused to see / hear that the building’s fire alarm was either being worked on or trying to be ignored by everyone as it malfunctioned with blinding flashes of light and intermittent buzzes that scared the heck out of everyone. Of course it was!!! GIVE UP ALREADY, SATAN!!! That just forced me to listen closer and harder!

Choosing Joy – Because Happiness Isn’t Enough is the title of this study by Kay Warren. Week one we focused on how happiness and joy are not synonymous. Jesus wasn’t this unapproachable religious tyrant who came to this earth to stop people from having any fun! Jesus was a man of JOY! Jesus always knew that one day in His future he would suffer a horrific death. Instead of focusing on that and letting that steal His joy, He focused on God, He trusted God. In doing that, He experienced JOY!

“Joy is the settled assurance that God is in control of all the details of my life; the quiet confidence that ultimately everything is going to be all right; and the determined choice to praise God in all things.”
Kay Warren

On a VERY lesser scale than being nailed to a cross in my future, an entire morning of very trivial problems threatened to steal my joy. In my old way of thinking before Nora came along, it most CERTAINLY would have. I would have let all of that mess set the tone for the rest of my day and not even gone to Bible study. No! God is in control and every (little) thing’s gonna be alright. {3 birds!} Praise you, GOD, that when everything is falling apart at the seams, You are using the scraps and weaving them into something resplendent. You are my true source of joy!

Bring joy to your servant, Lord, for I put my trust in you.
(Psalm 86:4 NIV)

Those who sow with tears will reap with songs of joy.
(Psalm 126:5 NIV)

“Come to me, all you who are weary and burdened, and I will give you rest.”(Matthew 11:28 NIV)

I set off with deliberate optimism, everything carefully packed, and a squealy baby in the backseat, “This is going to be FUN!” The downward spiral began just as we were waiting at the left turn light to pull into Children’s Hospital. Suddenly Nora sneezed, producing a big blob of boogies which she proceeded to gag and choke on, then puked all over herself. Hazards furiously blinking, I had to pull over to assist her before we were even in the garage.

We made our way up to Admissions after the gagging and retching subsided. Nora was none too pleased with being forced to simmer in her puke-laden clothes and car seat. It was also evident that she had a cold–lots of boogies. I neglected to bring the Nose Frida Snotsucker and didn’t even have so much as a bulb syringe. We were eventually admitted and escorted up to the sleep laboratory.

A very long night and a long story short, Nora did not sleep well at all, which meant that I did not sleep well either. Who could blame her.

I hope that someday there will be a better way to obtain this information and all these wires, tubes, prongs, and electrodes will look as silly as one of those machines they used to give perms with back in the 1930s.

Had I known that Nora had a stuffy nose due to a cold ahead of time, we definitely would have rescheduled. My dear, sweet, gracious and responsive husband packed up the other kids and brought the Snotsucker up to us along with the baby massage oil so I could attempt to attend to her gas pains she was also enduring. At least I had the beloved Snotsucker. But try extracting mucus from an infant’s nasal passages that are already crammed with 2 different sensors that looked like little plastic fu manchus and a nasal cannula all wadded up in medical tape. That’s about as much fun as trying to put a collar and a leash on a piranha. (I imagine).

“Eight more hours…” I remember thinking at one point, “Four more hours…”

Her last stretch of sleep lasted literally about 20 minutes until she abruptly and loudly gagged herself awake on snot, precisely the moment I had fallen into a deep sleep. Before I was even conscious, I was standing at her bedside patting her back and trying to extract boogies. It was then that the nurses came in and finally observed that Nora had had just about enough. Hopefully there was enough data for them to work with and they began removing all of her paraphernalia. The previous inconveniences of a single oxygen tube were made null and void. I was delighted to have my “naked” baby back. We celebrated with a bottle of milkies and quickly got dressed and packed up.

Just as someone from the transport team was about to lead us out the door of our room, Nora’s boogies activated her gag reflex and a fountain of puke erupted. An errant cascade of barf flowed directly into my underlying purse, I would later discover, and all over the clean and only remaining outfit I had just put her in, “This is FUN!”

I cleaned up as much as I could and figured she could endure a 20 minute drive home in a damp onesie. Considering what she’d just been through, I’m sure she didn’t even notice.

At long, long last we were home in the baff.

“Thank you verrr much!”

As trying and uncomfortable as that sleep study was, I know full well how lucky and blessed we were that it was ONLY a sleep study. That hospital is filled with children and families who are faced with far worse circumstances, who I know would trade places with us in a second. At least we got to take all the tubes and wires off and go HOME the next morning. It’s so very easy to let life’s problems get blown way out of proportion. Unfortunately, I don’t always have the setting of Children’s Hospital to serve as the stark reminder that things could be way worse. So, I missed out on a night of sleep, and Nora has a cold, but it’s certainly not the end of the world.

We all have our “storms” that will arise. Some, like this one are just a little drizzle. When I encounter the drizzle I can choose to complain and whine because I’m getting wet, or I can choose to enjoy the beautiful verdure of the land around me (or uh… maybe a little bit of both). Things are being given life and growing because of my rainstorms. Even the hurricanes serve a purpose on a grander scale.

Make thankfulness your sacrifice to God, and keep the vows you made to the Most High. Then call on me when you are in trouble, and I will rescue you, and you will give me glory.
(Psalms 50:14, 15 NLT)

God is our refuge and strength, an ever-present help in trouble.
(Psalm 46:1 NIV)

Tuesday & Wednesday

“Oh, like, HI! it’s me, Nornz aka ‘Orangela’. Guess what I’ve decided to start eating these past couple of days.”

“Here’s a hint.”

“And here’s another hint – my tubes n’ face turned orange!!”

“That’s right! Carrots!!! I ate 1/3 of the jar and surprised the heck out of Mommy and my speech therapist!! I ate more today too and I dinnint even gag once!! I’m so proud of me! Everyone was clapping for me and cheering and I really like that kinda stuff!”

“I still really like my milks too.”

“mmehhh…. I’m REALLY REALLY tired for some reason…. Goodnight!!”

Anyone who lives on milk, being still an infant, is not acquainted with the teaching about righteousness. But solid food is for the mature, who by constant use have trained themselves to distinguish good from evil.
(Hebrews 5:13, 14 NIV)

It looks like someone had too many milkaritas celebrating Cinco de Mayo and got themselves sleepy!

Speaking of sleep — Nora has a sleep study scheduled for tomorrow night at Children’s Hospital. She and I are checking in at 6 pm, spending the night, and allowed to leave at 7 am! I’m sure she’ll do just fine, but a little extra prayers couldn’t hurt! This will be my first solo adventure with her at the hospital – by choice. William could come, but it’s nothing urgent or stressful. This way he will be able to stay home and see to the other kids.

Just another laid back restful rainy Sunday here at Nora’s house — for which I am incredibly thankful!

P.S. My face muscles are a little sore today from smiling so big and so often yesterday!!! (seeking sympathy from people who just ran a whole lotta miles… LOL)

“Come to me, all you who are weary and burdened, and I will give you rest. (Matthew 11:28 NIV)

We met up quickly and easily with Kate, her husband John and Courtney just before the race started. Nora was charmed by the loud music from the DJ booth as we waited. Once they were given the go ahead, Gavin and I kissed Nornor for good luck and cheered them all on their way.

Off they went and on came my tears. I never would have dreamed this day possible at this time last year. Wikipedia defines the phrase “when pigs fly” as an adynaton—a figure of speech so hyperbolic that it describes an impossibility. The implication of such a phrase is that the circumstances in question (the adynaton, and the circumstances to which the adynaton are being applied) will never occur.

So, how ’bout that! (Kleenex, please…)

Nora was running today with a small fragment of an amazing team of runners known as Team Mitch. Most of Team Mitch will be running parts or all of the Flying Pig marathon on Sunday. Team Mitch was established in 2006 in memory of Mitch McLaughlin who passed away very suddenly at the age of 30 that February. He left behind a sea of mourners of which included his pregnant wife, (Kate’s sister) Maria and their then 2-year-old daughter, Ellie. Their son was born a month later and named Mitch after his Daddy. It has been nothing short of awe-inspiring to witness this community of people gather together in love to support one another and to honor Mitch’s memory and life. Amidst an unthinkable tragedy there is goodness, love, and even joy, proof of God’s presence. I was completely overwhelmed with gratitude when I was presented with my honorary Team Mitch t-shirt last year:

To see that they’ve now also included Nora was and is so completely generously beautiful! What’s even more beautiful is that Nora actually got to run with some of them today, in thanksgiving for her own life and in memory of a great, great man.

Gavin and I hurried on to a few different points of the course to cheer them on. I finally got my lips on her fat little cheeks at the finish line and ecstatically giggled at the medal around her little neck. Nora did AWESOME, made great time and great squeals of happiness along the way.

She certainly likes to jog and she likes to jog fast. I’d say that’s a good enough reason to start running if ever there was one. (That, and being chased by rabid tornadoes – which would have been my ONLY other reason to run.)

We wish all of Team Mitch the very best of luck tomorrow!

Jesus looked at them and said, “With man this is impossible, but with God all things are possible.”
(Matthew 19:26 NIV)

Nora has to practice for the really important 5k on June 1st!

“We’re gonna WIN, Mommy!!!”

Crazy Hair Baff Baby

“I’m going to call this ‘macaroni’.”

This baby got herself all tired out after a jaunt up to the mailbox. Sooo strenuous all kicked back!

We had a fun visit from Nana and Papa this evening. We love hanging out with them!

He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart.
(Psalm 91:4 NIV)