As planned (kind of) “we” took Nora on a jog. When I say “we” I mean “I” because Kate conveniently sustained a “minor running injury” and needed to rest for the Flying Pig 5k, 10k and marathon this upcoming weekend.
Nora really seemed to enjoy the jogging stroller! She liked the running part but did not at all appreciate my intervals of walking. It probably didn’t help that I’d just done a leg workout the day before AND I chose to go out in the heat of the mid afternoon! Some people are just dedicated, Kate!! 😉
Those .7 (POINT 7) miles really did us in! We needed to be immediately remedied with a cool bath upon returning home!
One of the big steps we’ve taken since Tuesday is getting Nora to accept prune/apple juice! She didn’t like it at first, but we persisted and now she’s an old prune/apple juice drinking professional! She drinks an ounce before each milkie order without it affecting her intake. It seems to really help with belly troubles and we no longer have to give her the nasty Miralax!
“Juicy Couture” “Oh, wait! Looks like it’s time to pick my nose! What???
I fell asleep on the couch this evening. When I woke up I found this on my pillow:
Love her!!!!!
Thursday
Sweetly sleeping beauty!
I have the gift and pleasure of being able to attend a Thursday morning Bible study at a wonderful church nearby. This session is on choosing joy. (Yes, it’s a choice!) OF COURSE I would notice a rainbow around the sun as I was walking in!!! I had to go back and take a picture!
I will elaborate more on the Bible study tomorrow. I do have to get some sleeps for now!
Here are pictures of Nornor from this afternoon and this evening:
Sing to him a new song; play skillfully, and shout for joy.
(Psalm 33:3 NIV)
So maybe our family room is a little overrun! There seems to have been an all out siege! “Good morning, sunshine!”
Today was the “Day of the Perfect Baff” that Nora had with the windows open. The fragrant Spring breeze laced with sunlight and bird songs danced with our senses.
The wind was a little chilly at times, but fortunately Nora had her 3 Owls to keep her warmed afterward!
The dietician paid a visit after baff time. Someone in this family has officially made it onto the growth chart!!!! 16 pounds, 6 ounces!
Then after that we buzzed over to Nora’s appointment with her pediatrician. She was soooo well behaved in the car!!
Nora’s heart rate was down in the 150s this morning. She’s eating very well and but for a couple of gassy troubles she was in great spirits and squealy. Of course this is the condition she shows up to the doctor’s office after we’ve spent the past 3 days freaking out and bombarding her team of doctors with emails and phone calls!!
“Oh! Is something the matters?”
In all likelihood Nora was a little dehydrated from losing so much fluids during her disagreement with Nutramigen. There weren’t any outwardly obvious signs–she was still wetting lots of diapers, still had tears, etc. but I did notice that her mouth seemed a little dry the other day. Now that we have her back on the soy she’s been keeping 95% of everything down. She’s regained her hydration, thereby lowering her heart rate!
On last check this evening I got some readings in the 120s! Her baseline is usually around 135.
This baby really likes to make sure we’re all on our toes! Thank you for praying us through her hijinks!!!
I was so in love with the weather and actual Springtime today! This tree in our front yard is in its peak of beauty right now. It is an explosion of fragrant blossoms, alive with the hum of thousands of bees and bird symphonies! I stood next to it this afternoon admiring the contrast of the pink against the cerulean blue sky, indulging my lungs to the perfumed air. Sheer perfection. If you look closely you can see a bee in the foreground blossoms.
Let the trees of the forest sing, let them sing for joy before The Lord.
(1 Chronicles 16:33 NIV)
“The grass withers and the flowers fall, but the word of our God endures forever.”
(Isaiah 40:8 NIV)
Something sparkly caught my eye and I found myself wandering down to the creek.
I saw a quote somewhere that said, “Time spent in nature is never wasted time.” There were a thousand other things I “should/could” have been doing, but none of those things would have untangled the knots in my mind heart and soul the way that nature can. I need to do this more. Hopefully Nornor will be able to come with me AND enjoy it someday soon!
“Dat might be kinda fun!!!”
Soooo happy to see Brudder and receive loves and cuddles from him!
We spent the rest of the evening blowing bubbles, taking a walk and laying around outside on the deck.
Tomorrow is jogging stroller try-out! Wish us some lucks!!!
I will praise the Lord, who counsels me; even at night my heart instructs me. I keep my eyes always on the Lord. With him at my right hand, I will not be shaken.
(Psalm 16:7, 8 NIV)
As if to send us all completely over the edge, our fire alarm system decided to malfunction with unnecessarily shrill decibels and flashing strobes at 4:42 this morning. As Gavin so aptly put it, “So much for going back to sleep… ever again!!!” That’s just not a nice way to wake up at all.
Nora’s heart rate did go down throughout the night but it was back up in the 190s this morning and she was very fussy. It was such a relief to have it go back down again as the afternoon progressed; and she was in great spirits this evening. Her sweet squeals were such music to my ears!! She’s been back on the soy formula all day today with very minimal pukies but several gassy belly episodes.
Nora has an appointment with the pediatrician Tuesday morning just to make sure there isn’t something else going on that might be causing the cardiac issues.
We are incredibly thankful for your prayers! Thank you thank you thank you!!!
But if we hope for what we do not yet have, we wait for it patiently.
(Romans 8:25)
“Wait. A. Minute!!! It’s cuddle time, Mommy!!! See??
“Aahhh. This is what I like!”
“An this too!! I’m really, really lovable!!”
Saturday
“It’s always Baff Time!”
“I’ve been working on my thank you cards for all of my wonderful birthday presents! I still have a lot to go, but I’m getting them done little by little! I loved all the happy birthday wishes on Facebook and all of the sweet notes and cards and presents! I must be the most loved girl in the world!”
“Daddy and Gavin went to King’s Island because Gavin got a really, really, really good midterm report. Greta doesn’t get midterm reports yet, but if she did it would probably be really awesome too. Greta and Mommy went up the street to the Spring Carnival at the old school! This ride was a crazy belly tickler!!! I’m glad I didn’t go on that!”
Sunday
“Hi, Sister! I sure do love you!!”
“Here’s Mommy. Apparently I caused some troubles and worries this evening with my heart rate…”
Ohhhh Nora, Nora, Nornor!!! What are we going to do with you!!?? Yes, Nora’s heart rate was very high again this evening, at one point up to 207. The only change we’ve undergone is the switch in formula. She didn’t seem to be tolerating the Nutramigen very well, as she was puking each bottle up afterward – and continued belly pains which is what we were trying to get away from in the first place. After almost 5 days of trying, we opted to go back to the soy. For the most part she’s been able to keep the soy down.
Later this evening we put her in the bath. She did some extreme tooting and then proceeded to stink up the water. <:0 (Ack!!!!!) We eventually got everything and everyone all cleaned up and finally situated back downstairs. I received a phone call from a friend just prior to hooking Nora back up to the pulseox machine. She prayed over us, asking for wisdom, peace and relief from this situation, praising God for the sweet little noises Nora was making. Her numbers were registering in the 170s, oxygen sats in the mid-90s. After I hung up the phone Nora fussed for a couple of minutes and then suddenly it was if a switch had been flipped. Her night nurse had just arrived, so she witnessed it too. Nora became bright-eyed and squealy, checking her watch. Her heart rate dropped back down to the 150s/160s, sats in the high 90s! That was the lowest it had been all evening!! I, of course, attribute this to prayer and wonder if she had some GI distress that had suddenly been alleviated?!? Nora did have a dramatic puke episode a little bit after this, which of course brought everything back up, but after she recovered her numbers looked good again.
Recent 3:30 AM check with Nora’s nurse and her numbers are still within a stable range! PRAISE, PRAISE, PRAISE GOD!!!
These bumps in this already uncertain road can be so trying and so draining. I love this baby girl with every ounce of my being. It’s so hard not to try to control every little bit of this, to TRUST FULLY in God. I have to constantly remind myself of everything He has brought us though and from!!! I heard a great quote tonight: “The crazy thing about grace is that it meets you where you are and never leaves you where it found you.” I’m a far cry from that helpless, grieving heap on my bedroom floor back in January of 2012. None of this is a surprise to God. He planned this all out before the creation of the universe, as He did each of our journeys.
Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand.
(Isaiah 41:10 NLT)
For it is by grace you have been saved, through faith—and this is not from yourselves, it is the gift of God— not by works, so that no one can boast. For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.
(Ephesians 2:8-10 NIV)
“Oh, hi! Good morning! I was wondering if I could order a milks?”
“Could we interest you in the Special of the Day? Today’s Special is the Carrot Purée. It is a waterish composition of locally grown garden fresh carrots?”
“Um… That looks kind of disgusting. Do you know if it has any texture?”
“There is a very slight texture, ma’am. Would you at least be interested in trying it? It’s gotten great reviews!” “I’ll try a little taste, I guess. I’m just not so sure about it.”
Myhegehmhmmblbgehhh… Woah. Do I have anything on my face?”
“We’ll be right back with a warm towel and lemon, ma’am.”
“Just bring me a burp rag and don’t forget my milks!!!!”
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Nora did let me get a little taste of carrots on her mouth! It wasn’t exactly a spoonful but at least it was something! She tolerated the spoon at a side angle AND the little bit of carrots! There was some wincing and fussing associated, but no gags! We’ve had two more consecutive pleasurable carrot dining experiences since then (also just little tastes). I think we’re making progress!
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Three duckies that came traipsing across the yard at my parents’ house:
If you look closely (above) you can see the big full moon just between the trees. I was awestruck by the beauty of this scene and wondered if anyone else appreciated it so much as I did in that moment while I was waiting for the ferry back home. Three birds way off in the distance glided back and forth past the moon as if this whole picture was hand-painted just for me in that moment. So personal it was that my phone camera could barely discern the evanescence of the moon let alone the three soaring specks.
And so ends another day.
So I commend the enjoyment of life, because there is nothing better for a person under the sun than to eat and drink and be glad. Then joy will accompany them in their toil all the days of the life God has given them under the sun.
(Ecclesiastes 8:15 NIV)
I am the Lord, and there is no other; apart from me there is no God. I will strengthen you, though you have not acknowledged me, so that from the rising of the sun to the place of its setting people may know there is none besides me. I am the Lord, and there is no other.
(Isaiah 45:5, 6 NIV)
Thursday
Here are a couple of award winning kids! So proud!
“What’s this rainbow doing on my cheeky??? Get me in the baff quick!!!”
“Be still, and know that I am God! I will be honored by every nation. I will be honored throughout the world.”
(Psalms 46:10 NLT)
“I love my sister too! We had some more important documents to go over.
“I got marker on my fat little hands which warranted a baff. I’ll take any excuse for a baff!”
“Well, hello there, little fella! My name is Nornor! Do you like baffs too!?”
“Sup?”
“Yes, I was!”
“Later that evening the grown ups went out to celebrate Uncle Dustin’s birthday at Nada. I wasn’t there but I heard they had a great time and loved meeting Uncle Dustin’s family!!! I hope I get to meet them too! Happy Birthday, Uncle Dustin!!!!”
And now these three remain: faith, hope and love. But the greatest of these is love.
(1 Corinthians 13:13 NIV)
Monday
“I guess it’s time to get out of the toaster and get dressed….”
“There’s this really pretty baby that lives in my mirror. I really like looking at her. She’s a total copy cat though….”
“Mommy thinks that copy cat baby is really cute too, but I can tell Mommy thinks I’m the cutest.”
“Check out my side-mullet. My Uncle Dan will be proud!”
“I don’t know how I missed out on this trip to the beauty parlor (er… Supercuts) with my sister!!! I’m thinking about maybe getting a permanent.”
“I think my sister looks real pretty with her new haircut!”
Tuesday
Poor Norns got 2 shots at her one-year checkup. She weighed in at a hefty 16 lbs. 2 oz! Dr. B. was very pleased with how she is doing!
All that commotion made for a worn out baby girl!!!
Despite the possibility of fussiness, fevers, etc. on account of the shots, Nora woke up extremely happy!
We have decided to make a change to her formula. The Similac Soy seems to cause her a lot of discomfort after feedings. It’s not lengthy crying episodes, but enough to explore the possibility of making a change. We are trying out Nutramigen. It’s kinda stinky, but other than that she’s doing well with it. Ordinarily we would switch to whole milk – or milk alternative at Nora’s age, but she isn’t getting other sources of nutrition with solids as other babies are at her age. We are still working on that and now have a speech therapist involved to assist us. Nornor has an aversion to anything with texture. The textures set off her dramatic gag reflex and then we wind up with pukes all over the place. There are a series of massaging techniques that we are doing around her mouth to stimulate her lips and tongue. She did allow me to feed her some delicious whip cream off of her spoon the other day! That was a big step! We may just bypass the rice cereal altogether and go straight to the stage 1 baby foods which have barely any texture to them. Wednesday we are going to try carrots!
The Lord has done great things for us, and we are filled with joy.
(Psalm 126:3 NIV)
Some of you may remember James and Emily Mummert from awhile back who delivered their sweet sleeping angel Harrison on May 29th of last year.
As Harrison’s angelversary is approaching, his parents have coordinated a 5 and 10K in memory of their little boy. It is to take place on June 1st of this year in Beavercreek, Ohio. All proceeds from this race will be presented to Dayton Children’s Hospital NICU with a fund set up in honor of Harrison. Specifically this fund will assist families who are going through high-risk pregnancies. You can find out more about the race and register for it on the Harrison’s Heroes website.
If there are any business owners who are interested in sponsoring, there are a few spots left. You can get more details on that by emailing James at James.mummert@gmail.com.
I’m not really a runner by nature (unless something is chasing me <har!>) but I am definitely hoping to be a part of this. I am currently collaborating with my dear friend Kate to get Nora acclimated to a jogging stroller so Nora can run with us. Kate electively and regularly runs vast distances, of which will include a 100 mile endurance run this summer (!!!!!) – so it might just be Kate and Nora running. I joked with Kate that I’d do a leg of the 5K and then catch a shuttle to the finish line where I’d meet up with them – – WORN OUT!!! 😉
I’ve been told that the 5k course is a pretty standard course, not a terribly difficult challenge at all. The 10k course is perfect for more serious runners. A little more hilly and up and down. James says it’s perfect for any runner looking to train for a longer race (half-marathon or full).
Register before May 15th for a guarantee of an awesome Harrison’s Heroes t-shirt!
Do you not know that in a race all the runners run, but only one gets the prize? Run in such a way as to get the prize. Everyone who competes in the games goes into strict training. They do it to get a crown that will not last, but we do it to get a crown that will last forever.
(1 Corinthians 9:24, 25 NIV)
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Gavin went to work with his Dad today and the girls all stayed home. Too bad it’s “winter again” otherwise we might have at least gone on a walk. It was a beautiful day to put up a sign, however!
“Today my sister and I went under cover.”
“I’m Pretty Special Agent Nornor.”
“We decoded and transcribed important messages together in my office.”
“I had some important matters to assess.”
“Then I went to the gym.”
“Can someone spot me?”
Above all, love each other deeply, because love covers over a multitude of sins.
(1 Peter 4:8)
I was in a pretty sour mood yesterday evening as I was updating the blog. I was hurting for a family I have never met in person, hurting for so many families who have had to endure the unthinkable loss of an infant either to trisomy 18 or other unfortunate circumstances. Statistically speaking we should have been right there in that same boat, but we’re not. I don’t know why God said yes to us, and not others. It seems so unfair from my limited viewpoint. I sat there on the couch aimlessly trying to figure it all out while William was watching the Reds game. I was momentarily and joyously distracted by something that had taken place on the TV involving a Reds bat boy. The tears of sorrow that had been welling up in my eyes spilled out as tears of joy as I watched this man with Down syndrome, the Red’s Bat Boy, on fire excited about a homerun for the Reds. Even the announcers were excited, not so much for the homerun, but for the infectious and passionate joy that this man was exhibiting. One announcer said, “This is a person who wants nothing more in life than for other people to experience good things.” Wow.
I later read the story (read it here) and got to watch the whole thing transpire again with a video within the article. His name is Teddy Kremer and this was his second opportunity to work as a Reds Bat Boy. Just before Todd Frazier was up to bat, Teddy told Todd to hit a homerun for him–and he DID. In the story I linked above, Todd Frazier said, “How can you be mad with a guy like that around?” — or on TV as the case was for me.
I just found such joy in witnessing that that I had to share it.
Nora is as sweet as ever. She spent the day getting kissed and loved and sniffed and “pinched” and “bitten” by her Muthr.
And just because it’s cute and funny — a picture of Greta and her friend out for ice cream after dance class!
You have turned my mourning into joyful dancing. You have taken away my clothes of mourning and clothed me with joy, that I might sing praises to you and not be silent. O Lord my God, I will give you thanks forever!
(Psalms 30:11, 12 NLT)
I had written posts for Tuesday and Wednesday, which was Nora’s official birthday. But since then I received the very sad news that little Rosalie who I had requested prayer for on the Praying for Nora FB page has gone on to heaven yesterday (April 17th) just 4 hours after she was born. Like Nora, Rosalie was diagnosed with Trisomy 18 while she was still in her Mommy’s, Krystal’s womb. Despite the laundry list of very frightening statistics, Rosalie’s parents also made the decision to carry her to term, and to put their trust in God. Reading the words of Krystal’s blog are almost a direct parallel of my own thoughts and emotions that I was experiencing exactly a year prior. As fate would have it, Nora Rose and Rosalie would come to share the same birthday. Fervent prayers for strength and peace for this sweet family were amalgamated with my rejoicing over my own sweet baby’s one year birthday. I wanted so badly to hear that Rosalie made it and felt that maybe if we hoped and prayed, wished and pleaded hard enough that God would answer that prayer for them too. I was sitting outside watching Gavin play basketball this evening when I got the news in an email from Krystal that Rosalie had gone on to heaven. I sat there numb with sadness staring up at the three birds who happened across the sky. “How is it that I got to bring home a baby, and other families don’t?” I wondered aloud. In that moment I remembered a correspondence I’d shared with another Mommy of an Angel. In her email to me she had pitched the same question. Through the loss of her own baby girl (also named Nora Rose!) Alison pointed out to me that God tailors each experience and each outcome lovingly and specifically for each person. She is able to see now that God was saving her from the hurt and worry that I deal with regularly in regard to my Nora’s health. It is just differently distributed afflictions of heartache, differently distributed opportunities to draw closer to God. Because we are all unique individuals, we are given unique individual experiences. There are no cookie cutter prayers to be said, and no cookie cutter answers to be given. Only God knows what is best for us, even though we think we have it all figured out for ourselves. Alison’s Nora and now little Rosalie won’t get to be raised by their parents here on this earth — but PRAYERS WERE STILL ANSWERED. That might not feel so obvious to Rosalie’s family right now in the fresh anguish of their loss, but through their unwavering trust and faith in God it will.
A wise woman once said back in January, “Every day from here on can be hard if we let it. But I’m learning to trust in Him, that he will direct my life, my circumstances, my day to day. He is capable. And He is more than capable of caring for my Rosie whether it’s watching her grow here with us or holding her in His arms in Heaven.”
We’re all praying for you Krystal, Chris and family!
Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand.
(Isaiah 41:10 NLT)
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Tuesday
“Oh, hi! I’m worried that my hair might be a little fuzzy this morning. Maybe I’ll order up a baff.”
“I could sure use a wash and a rinse…”
“Maybe get my nails did up?”
“Yeahh.”
“That looks like a fun time!”
“Hey! Did you hear about these piggies? It says here they got woken up. They were in the hay it says.”
BIRTHDAY Wednesday
Incase you haven’t seen it on the Praying for Nora FB page, here is the video I created in celebration of Nora’s birth.
Go, go, go, go, go, go
Go Nora, it’s your birthday
We gonna party like its your birthday
We gon’ sip milkies like its your birthday,
And you know we might have some cake, it’s your birthday!
“You can find me in the tub, bottle full o milks…”
Nora and I had a sweet day together just she and I after Daddy and the big kids left for work and school. After her birthday baff we had a few special visitors and then we played in her new rocker chair.
“Well now dis is kinda interesting!!”
Then we went on a short walk to the mailbox before heading right back home because someone got upset about it all. (I won’t name any names…)
This same certain little somebody did, however, enjoy sitting out on the deck for over an hour.
It was so CUTE watching her little wisps blow in the warm breeze.
She was very amused by the wicker pattern of the bench we were lounging on!
“Dis is kinda funny!”
After dinner we sang Happy Birthday to little Nornor. She would have preferred that we sang the song at least 20 more times.
(whispering) “I get deez people to do whatever I want just with a couple of fusses and some super-extra cuteness. Haha!”
For we are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things he planned for us long ago.
(Ephesians 2:10 NLT)
Thursday
Whatever is good and perfect comes down to us from God our Father, who created all the lights in the heavens. He never changes or casts a shifting shadow.
(James 1:17 NLT)
iwillcarryyou 