I guess we’ve been in here 2 weeks now according to my post titles. Who knew?

Nora had a decent night last night and a good day today. She’s still struggling with her gag reflex’s terrible aversion to tubes, but overall it was a nice peaceful day.

We opened the blinds this morning and let the sun rain down on her. She really got a kick out of it!

Nora slept for most of the day, but we did get a few more smiles from her. I can’t even stand how sweet that is to see that little bit of joy radiating from behind all of the tape and tubes. She is beyond precious.

Tomorrow they will be doing an ultrasound of the fluid mass that was discovered on her left lung during the CT scan. We need prayers that it has shrunk, or reveals itself as obviously harmless. I will be so bold as to pray that it has altogether DISAPPEARED. We are also praying that her NG tube can be removed. Any relief she can get in her poor tiny throat would probably be much appreciated!

Little heart-shaped droplet of blood on Nora’s arterial line dressing that occurred during her blood transfusion this afternoon. Someone else’s blood that was donated to heal my child. Yes, that is love. Thank you!

“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”
(John 16:33)

Some of you may have noticed, as I have that we haven’t heard from our sweet friend Ethel. If you’ve just started following Nora’s blog, Ethel has been with us since almost the very beginning. I could always count on her to leave me an encouraging and uplifting comment on just about each and every post. I don’t know how she came across the blog, and I have never met her, but William and I truly believe God put her in our lives for the beautiful purpose of spiritually energizing us. I’ve been worried about her uncharacteristic silence and just discovered that she is in a nursing home recovering from knee surgery. Reports are that she is doing awesome and pushing herself hard. I hate that she has to go through yet another trial, but I am relieved to hear that she is doing well. Since I’m not at liberty to give the nursing home’s address out, I thought that I could collect cards from any of you who would like to send a word of encouragement and I will pass them on to her. She was admitted on or around May 21, so I’m not sure how much longer she will be there. I’m thinking it would be best to get these out to her sooner than later. If you would like to send a card to Ethel, please send them to us at:

Atlantic Sign Company
C/O Ethel Chaney
2328 Florence Avenue
Cincinnati, Ohio 45206

We will be sure that she gets them. Please keep Ethel in your prayers. This poor woman has been through SO much over this past couple of years first with the loss of her sister, then her son, then her husband and now she’s dealing with the recovery of a pretty major operation. She is one strong, amazing woman.

{Nora is doing good! More about her later! 😊}

And here she is in her morning ray of sunshine ~

I know it’s probably sad to see her like this, but she looks way better than she did a few days ago! She is definitely making progress.

Nora caught up on all of the sleep she lost and finally started to come to today. She’s had some trouble with gagging and excess spitties, which we are pretty sure is because of the NG tube and the ND tube going into her nose and down the back of her throat. She has such a sensitive gag reflex and now that she’s a little more alert, she’s more aware of them. Hopefully the NG tube can come out soon. Its purpose is to drain her stomach when it fills up. Her stomach isn’t going to be ready for milkies for quite some time, so the ND tube bypasses the stomach and goes directly into her intestines. She’s been getting little bits of special milkies through the ND tube today without any outward complications.

We were able to hold Nora the other day, but shortly after that she began having terrible withdrawal symptoms and the joy of that was slightly squelched. Today was a much better experience {until all of her tubes and wires got knotted up into a tangled monstrosity}.

Daddy / Nornor cuddles ~

“Dis is kinda neat. Where’s my puppy pyano been?? What day is it??”

This evening I even got to see some BEAUTIFUL little girl smiles!!!!!

Norns has received so many sweet cards and e-cards over the past few days. Thank you so much for those! They really do brighten up the room! If you would like to send her one, we are in room B612! E-Card Link

We’re so thankful for moderately peaceful days like today, for the kindness and generosity of friends and people we’ve never met, the concern, care and intelligence of the doctors, surgeons, and nurses, and for the continued healing of our sweet Lady Baby.

Even though these are days spent in the hospital, when we would so much rather be at home, they are days spent with Nora. Days that we almost didn’t get. Do you believe in miracles yet?

Remember the wonders he has done, his miracles, and the judgments he pronounced.
(1 Chronicles 16:12 NIV)

Yesterday night they were finally able to get Nora comfortable enough that she was able to rest her enervated little body. Now that she was peaceful, we felt comfortable leaving her in the care of her sweet nurse in order to get some sleep of our own. In the midst of our own sleep deprivation we were on the verge of mental and physical collapse. Each of us woke up every few hours and fumbled down the hallway to her quiet room dimly lit by the glow of the monitors. During my visits to Nora my bleary eyes scanned through her numbers and my worries were allayed. Soft kisses and head strokes were administered before heading back to the parent cell room.

We continue to be very concerned with Nora’s withdrawal from her post surgery medicines and sedations. It is such a delicate balance between keeping her out of any discomfort, yet keeping her awake enough that her drive to breathe doesn’t disipate. That was especially of top concern when she was making the switch to the nasal cannula. Now that she’s shown that she’s able to breathe on her own they have been able to reinstate some medications to keep her comfortable and allow her to rest. She’s essentially slept all day long, which I suppose I would be doing too if I were up for 32 hours straight. But now comes the issue of weaning her off of them. In networking with other t18 parents I’ve learned needs to be done SLOWLY.

This beautiful reminder just so “happened” to be sewn onto the “randomly assigned” hospital quilt that Nora slept on last night:

This morning during rounds we received the news that they would NOT be doing an analysis of the fluid on Nora’s lung. In order to do that they would need to reintubate her and put her under anesthesia again. Since her fever broke over night and her white blood cell count has not climbed up any more, they are not so concerned with the fluid be infectious. It would be a real shame to have such a setback with her respiratory issues only to find that it was clear fluid. The risks far outweigh the benefits. They have placed her on some more antibiotics, which may or may not have solved the problem. They will be re-evaluating things in a couple of days. We were SO SO relieved to hear that this is not as serious as initially thought.

Despite our fits of worry and anxiety, God continues to show His mercy and His love to us in so many ways ~

Overall it has been a very good day. No fevers, CO2 levels are good, Nora got lots of much needed rest, and she even POOPED today!! We have been waiting and waiting and waiting for bowel sounds, which sometimes take awhile to reappear after major surgeries. Sometimes they’d hear little gurgles and then other times nothing. I’ve never been so excited to see a poopy diaper!

Because of the delightfully uneventful day and because of the generosity of Linda M. and Paula B. who offered to stay with Nora while we were away – WE GOT TO GO TO GAVIN’S 5th GRADE PROMOTION CEREMONY!! Thank you so much, ladies!! It meant so much to Gavin to have us there!

Fuss, fuss, fuss, fuss…

SMILE!!!!

Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, “The Lord is my portion; therefore I will wait for him.”
(Lamentations 3:22-24 NIV)

Reflections of the fiery sunrise this morning:

Meanwhile at almost the same moment in time 8 – 10 hours North from here:

Of course I would rather be the one who snapped the 2nd picture, but I didn’t let the beauty of the first picture pass by in vain. Thank you, God for such a beautiful sunrise!

The second picture was sent to me by my Mom who, with my Dad, is way up North in our vacation spot. They are in the Upper Peninsula of Michigan where the trees are just now beginning to bud. Once Nora was stabilized we insisted that they continue on with their plans to head up there to get things in order for our family vacation this summer.

Later on in the afternoon when that same beautiful sun was much higher in the sky I received a call from my Mom. I always love the calls that start out with an excited, “Well, you’re just not going to believe this!!!”

She proceeded to explain to me how she and my Dad had been at a get together at my (now long deceased) Great-Grandmother’s cottage. The cottage is now owned by my great-Aunt and Uncle who hosted a gathering for the flock of other migrators who have headed North for the summer. Among the people my Mom met that evening was a woman from the Greater Cincinnati area. As it turns out this woman and her family now occupy a house up there that we used to rent back when Gavin and then Greta were babies. That was the first of their connections they discovered as they got to know each other. Eventually the conversation rounded to Nora, as this baby is never far from her Nana’s thoughts. My Mom explained all that we are going through and how we’re still up at Children’s Hospital. There are no coincidences, and certainly no way to explain the second connection that transpired 560 miles away in a little unincorporated community with a population of 2200. This woman who my mother had never met until that evening stopped by to visit my Mom this afternoon to tell her about HER daughter who works here at Children’s Hospital. She had spoken to her daughter about Nora and discovered that in an unbelieveable twist of fate, HER daughter was there in the ER last Sunday afternoon. She was the one squeezing the ambubag for 2 hours in a mad fight to save MY daughter’s life. WHAT??!!! Yes. Really.

These continual connections and parallels send chills through my body. I cannot explain them as anything other than Divine Providence. The invisible thread that weaves and winds through each of our lives creating a beautiful tapestry that we can’t see or imagine.

Nora is doing good. She is still on the bipap mask and tolerating it reasonably well. She has started to become a little more alert and has had some pretty sad crying spells. The plan is to give her some time off of the mask tomorrow and see how she does. Her poor little voice is so hoarse from the intubation, plus being under the mask – it is really hard to hear her. They’ve adjusted her pain medications to make sure she’s not in any pain. We think she just doesn’t like being inside of a big giant mask that covers her whole face. There has been some fevers today which have been cause for concern. They just drew some labs and we’ll have those results back in awhile. Please pray that there are no infections brewing. Things are complicated enough just the way they are, thank you very much!! Nora finally sleeps peacefully, and now so must I before the beautiful sun rises again.

Thank you for your prayers!!!

My name will be great among the nations, from where the sun rises to where it sets. In every place incense and pure offerings will be brought to me, because my name will be great among the nations,” says the Lord Almighty.
(Malachi 1:11 NIV)

The previous night was blissfully uneventful, but the anticipation of today’s events loomed restlessly near.

The first item up for order was the placement of a second PICC line.

In a delirious haze of sleep deprivation I all but slept walked to the parent sleep room this morning. As no amount of pacing and worrying was going to make the PICC line placement go any smoother, I succumbed to my exhaustion. Dreams of running through road construction in a wet ball gown plagued my head.

When I awoke there were murmurs about the extubation. Blood was drawn, levels were checked, and numbers were monitored. The sky scraper of IV pumps intermittently vied for attention, and a certain baby slept. So we watched, and we waited, and we prayed, and we ate Cheez-Its, and we had cookies and milk, and we did crossword and sudoku puzzles, and watched and waited and prayed. Nora finally woke up around 3:00 and satisfied the observing doctors and nurses that she was interested in staying awake. The decision to begin extubation was initiated. We held our breath as each of Nora’s breaths were closely monitored from every angle.

The tube was carefully untaped from her soft angry face and then removed. The initial attempt of transferring her to the bipap machine was unsuccessful. They were not able to get a good seal with the mask because of the NJ tube (the feeding tube that goes through her nose, bypassing her stomach and directly into her intestines). A quick decision was made to forego the bipap and go directly to the high flow nasal cannula. It was nice to have her little face uncovered for a few minutes, but ultimately that decision was rescinded. Her levels were all okay for the moment, but she wasn’t getting the adequate pressures in her lungs. Inevitably their condition would have deteriorated over the hours and she would have ended up being intubated again. The second attempt with the bipap mask was successful. William made the suggestion of tucking the NJ tube up into the mask, which moments later was also suggested by my sister via text. It worked! Through the evening Nora’s levels have remained stable and the doctors are all pleased with the transition. The doctor reported this evening that her lungs sound so much better than they did earlier. There was a lot of junk in her lungs associated with the intubation. Most of it seems to have been cleared with suctioning and on her own. Praise be to God!!

Meanwhile back in our other world ~

Gavin and Greta enjoyed part of their weekend with their cousins. They went to church and then spent the night with Aunt Sarah & Co.

Gavin is sometimes the odd man out because he’s the boy. Keira is sometimes the odd gal out because she’s younger. They’ve developed such a sweet bond through their mutual ostracism.

Waffles all up in the hizouse!

Gently down the pond…

I’m so thankful for our Kelly and for everyone who is seeing to our other kids through this time. It is so incredibly hard to have our lives split in half like this. We want nothing more than to all be together again. The brief visits home are few and far between right now. Gavin and Greta understand for the most part, but as Greta explained to me in tears over the phone tonight, she can’t help it that she misses us. This has been another true lesson in patience and endurance for ALL of us. I reminded her to stay focused on everything that is GOOD right now instead of thinking about all of the ways she wishes it was different. If we think about all of the bad things and how WE think things are “supposed to be” we will drive ourselves crazy.

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.
(Philippians 4:6)

And a week went by just like that in the very blink of an eye. Happy birthday to my Dad today! I love you!

The placid calm of the night was contained only to our room. I drifted off to sleep watching an unusual hum of activity through the glass doors. It wasn’t until I awoke two hours later that the desolate realization hit me. The room that had remained reverently dark and quiet since we arrived was brightly lit, vacant. A family had said goodbye to their 6 month old baby girl. “Our hearts are broken, but Ava’s is now whole…” her Facebook page explained. I got out of my makeshift bed and kissed Nora’s head, tears welled up in my eyes. “Why? Why? Why? Why? Why?” my troubled heart petitioned. Unimaginable loss. It wasn’t fair. I fell back asleep with a hollow pit in my gut, praying for God’s peace to engulf this family. Fly high, little Ava!

Nora had a good day today. The doctor placed an arterial line in her wrist without complications to phase out the femoral line. The plan is to place another PICC line tomorrow morning and then extubate her depending on how she does through the night!! Things are all pointing in the right direction for her. Thank you, God!!!

Be strong and take heart, all you who hope in the LORD.
(Psalm 31:24)

We sat in a blanket of sun on a curb in front of the hospital. An edie of milkweed fluff, cigarette butts and a candy wrapper winded around our feet. I followed the path of an urgent sparrow up into an awning then glanced up at that special little window up on the 6th floor, blinds closed.

She was asleep when we left her side moments prior, sedated after the broncoscopy. The procedure was productive with the retrieval of inexorable mucus. Her oxygen saturations, carbon dioxide levels, blood pressure, heart rate, lung pressures and body temperature blipped reassuring rhythms and readings across the assemblage of monitors in the room.

(Thanks Thomas R. for that hilarious visual that I superimposed if you look closely….. 😉)

Earlier in the day there was concern that Nora’s lungs were not operating to capacity. I watched through fragmented moments of lucidity as the numbers dipped and dived, then shot back up again. Nora silently flailed her little wired arms and legs around, dazed and confused, the sound of my voice gave her hiccups. Daddy’s whistling and tender touches, Mommy’s soft caresses, does she understand?

The soft-spoken voice of Nora’s beloved cardiologist reassured us that everything that Nora has been experiencing today is correctable. It’s all within the range of normal to have set backs like this. To step back and look at the whole picture, Nora has made leaps and bounds. She continues to astound despite today’s obstacles.

In desperation to keep my head above the water I grab at all that is good and I give thanks and praise for it. I’m thankful for our friends and family who have fearlessly rallied around us, lifting us up with prayer and encouraging words, heartfelt hugs, cards and sustaining goodies, reminding us of God’s inherent goodness. I awoke from a nap in the plastic pull out chair to the sound of our friend Tommy’s voice inviting the nurses to stay in and pray with us. He boldly spoke God’s word over our wiggling baby girl with such authority. Tears sprang to my eyes like a burst pipe as Tommy quoted John 14:12, “Very truly I tell you, whoever believes in me will do the works I have been doing, and they will do even greater things than these, because I am going to the Father. And I will do whatever you ask in my name, so that the Father may be glorified in the Son. You may ask me for anything in my name, and I will do it.”

As the sun gravitates closer to the horizon, I take a deep breath. Tomorrow is another segment of this blur in time. We ask you, Abba Father, please continue to let your glory shine forth from this precious baby girl that you have entrusted us with. Please heal her broken little body and keep her protected from any and all infection. I pray that you comfort Nora and spoil her richly with your peace in the moments she might be scared or confused. Breathe life fully back into her lungs and her stomach and intestines. Protect her heart from any damage during this stressful time. Thank you for the progress that has been made and for all of the BRILLIANT minds who have converged to find answers and solutions for this little girl that we love so much. In your mighty name, I pray.

I have no idea what day it is or how long we’ve been here but by looking back at yesterday’s blog post. Sleep deprivation has caught up.

Just wanted to let those of you who aren’t on Nora’s Facebook page know that over all she’s doing well. She’s had a few critical moments — as I stated on FB:

Nora is doing well. She’s having some airway issues because of mucus but it’s under control. She has 2 tubes down her throat and her body is producing mucus to get rid of them, as they are foreign objects. They are going to try for extubating tomorrow or Saturday. Overall the doctors seem to be very pleased with her progress. Please pray that she can make the transition off of the ventilator smoothly when ever that might be!

I’m sorry for the silence. My adrenaline batteries are LOW.

From Jesus Calling today:

May 22

When things don’t go as you would like, accept the situation immediately. If you indulge in feelings of regret, they can easily spill over the line into resentment. Remember that I am sovereign over your circumstances, and humble yourself under My mighty hand. Rejoice in what I am doing in your life, even though it is beyond your understanding.

I am the Way, the Truth, and the Life. In Me you have everything you need, both for this life and for the life yet to come. Don’t let the impact of the world shatter your thinking or draw you away from focusing on Me. The ultimate challenge is to keep fixing your eyes on Me, no matter what is going on around you. When I am central in your thinking, you are able to view circumstances from My perspective.

Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time.
—1 Peter 5:6

Jesus answered, “I am the way and the truth and the life. No one comes to the Father except through me.”
—John 14:6