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

So many evidences of God’s presence were with us yesterday. {NOT THAT I NEED THESE SIGNS TO BELIEVE – but they sure are consoling!!!!} If I were to go in to them all at once in this post I would sound like an overexcited little kid rambling about EVERYTHING I saw on my first trip to the circus, “And then… !!!! And then… !!!!! And then… !!!!! And and and and!!!!”

One of the most poignant assurances happened when our second surgeon introduced himself to us. After a lengthy discussion about the procedure that Nora was about to undergo he noticed William’s TEAM MITCH shirt. {I had talked about Team Mitch in the Lots o Pictures post and last year’s Pigs Do Fly post, of which Nora was added as an honorary member.} The T-shirt William had on was vintage and didn’t have Nora’s name listed on them yet, but these are the shirts from the year Nora was born:

After William explained the shirt, it turns out that this surgeon knows the McLaughlin family well. Their young daughters are very good friends. In absolutely no instance of “coincidence” at that EXACT MOMENT OF CONNECTION (2:52 PM) Maria (Mitch’s wife) texted me a picture of her aforementioned daughter standing next to a big giant PINK Hello Kitty and reminding me that God’s got this, not to let satan distract me, and to let our guardian angels handle this.
(tearful breath of absolute awe in the knowledge that all the right people were in place at just the right time!!)

I think it’s safe to say that Mitch is looking out for his little Team Mitch buddy!!!!!! This was the 2nd occurrence of the day that involved Mitch — both impossible to ignore or dispute.

As I explained in yesterday’s post, Nora’s surgery had been bumped. She didn’t actually end up going down to the OR until about 3:45. We waited patiently in the stark empty room, void of our baby and her big girl hospital bed, thankful for the distraction of sweet friends who work here and our nurse.

The phone finally rang a little after 5 where one of the members of the surgical team explained that they were in the process of closing her back up. Everything looked good. Even though we knew we weren’t out of the woods by any means, William and I hugged, cried and gave mighty thanks and praise to God. We wanted to wait until we had the full story from the surgeon before we publicly declared anything, but thus far things were looking good!

Immediately after surgery Nora had a pulmonary hypertensive crisis which prolonged her stay in the OR. Fortunately they got it under control and they were able to bring her back up to the CICU around 7 pm. We were a little taken off guard when they quickly ushered us out into the waiting room and told us that it would be about an hour, maybe more before we could see her. They assured is this was just standard procedure. And so we waited. Finally around 8:30 we got to go back to see her. She was still very sedated, but her belly was sewn back up and she looked much better than she did with everything opened up. The report: Nora’s belly wasn’t exactly the PINK that we were all hoping and praying for, but it will be. It was pretty bruised up still, but it will heal and none of it was necrotic!!!!! PRAISE, PRAISE, PRAISE, PRAISE GOD!!!! Her g-tube was placed without complication and her intestines all looked really good. They did note some damage to her spleen and her pancreas. However, it was such a minimal amount they don’t expect that to cause any longterm problems down the road. While her surgery was a great success – the concern was now shifted to her heart and lungs. For a child without a heart and lung condition, it would be a tremendous undertaking to have undergone TWO major surgeries within 48 hours of each other. She basically had just run a marathon and was now needing this time to rest and recouperate.

Around 9:30 Nora experience some more pulmonary hypertension issues. Her sats were dropping steadily. They bagged her for a few minutes so they could see what settings needed to be adjusted on the vent and that seemed to improve things just a little bit.

Things were steady enough for me to go to try and get some sleep in one of the parent rooms, but no sooner had I layed down I got a text from William that Nora was having trouble. I tossed on my slides and scuried back to her room in my pajamas, people running past me to get to her room. I was scared. The lights were on full blast and the room was full of people. William stood back with fear in his eyes as they bagged her and suctioned her. I was grabbing at words to pray as I raced to his side, my heart beating out of my chest. “Come on baby girl!!!!! Come on!!!!!!” They called out orders to one another, rushing about the room, still suctioning, still manually ventilating her. Time stood still. We watched and we prayed. Suddenly the heavy pall was lifted from the room as the nurse suctioning held up a big “loogie” (medical terminology for mucus plug) that had every right to be accompanied by a celestial harp strum. There was a collective sigh of relief from all of us. Nora’s breathing was no longer labored. Her oxygen sats and CO2 levels recovered to normal levels and people began slowly streaming out of the room.

Today has been a very good day. There have been very few issues. They’ve had to increase her morphine a little bit, but she’s been able to come off of the epinephrine and calcium. She’s also been upgraded to a less critical state!! Things are headed in the right direction!! LIttle bitty baby steps!!!

For the most part, Nora is pretty sedated, but she did have some long periods of semi-consciousness. She was opening her eyes a little bit and turning her sweet fuzzy little head toward the sound of our voices. She’s been moving her arms and legs around a little bit too and had to get some soft little restraints around her wrists to prevent her from grabbing at her amassment of tubes and wires. It’s so strange to have these days absent of squeals and babbles. We miss Happy Baby so so bad, but we know she’ll be back. She is one TOUGH baby!!!!!

Three birds on the wallpaper border of Nora’s room:

Heart sun from my sister who pulled over to take this picture:

Therefore we do not lose heart. Though outwardly we are wasting away yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary but what is unseen is eternal.
(2 Corinthians 4:16-18)

Nora had a good night last night, all things considered. We were forewarned that the first night after a major surgery like this is often rocky. It wasn’t and we are beyond thankful for that. Today they are only working on keeping her stable, which doesn’t seem to be much of an effort. Her precious little body is doing everything that it is supposed to.

I’m not going to post pictures of her for awhile because she’s been pretty beat up. Here’s a sweet picture of her little hand:

Things were really, really, really, horrifically awful yesterday. Nora was in septic shock. There was NO time to wait for the IV access team to arrive and even when they did get there, they too had a VERY hard time accessing any of her veins. Everything was shutting down. We counted 22 poke marks in her groin – and those are ones not under the Band-aid. In desperation they had to drill into the bone of her shins to get fluids into her. I am crying as I write this. She didn’t even flinch. William was right by her side and said he had seen this happen on TV as a last ditch effort to save a downed soldier while he was gettting helicoptered out of a war zone. Nora is certainly our little soldier and we were definitely in a war zone as we battled FIERCELY for her life. She was emergently intubated in the shock and trauma bay as they continued to give her fluids. After what seemed like an eternity, she was finally stabilized and brought up to the old familiar CICU. Things were so urgent that they were going to do the surgery right then and there, but they finally decided that she was stable enough to bring her down to the OR. And so we waited. Thank you Mom and Dad, Jesica and Tommy for allowing yourselves to be “hijacked by the Holy Spirit” as Jesica put it to be with us and to pray with us during that terrifying time.

Nora is hooked up to a billion tubes and wires and for now has an open wound just below her sternum extending through belly button and stopping just below it. The wound is covered with clear bandaging and is really scary looking, so I won’t share pictures of her right now.

As I said, Nora had a good night last night. We did end up getting some rest as our adrenaline storms subsided. Keeping her stable is the only course of action for today.

This morning as I approached her bedside to stroke her sweet hair, I smiled at a ray of sunshine that was LOUDLY and BOLDLY shining across her stomach. Its gentle warmth shined upon her, the hand of God, “I’ve got this!!! I’ve got this!!!” The Venetian blinds were closed too, I might add, but this ray of sunshine found its way to her right in the spot that needs healing. This is only a part of it which slightly resembled a heart: 

Tomorrow they will do more surgery. Please join us in specifically praying for nice PINK tissue. It is understandable if some parts can’t be salvaged, but we have witnessed countless miracles with this baby. God has shown through Nora that ANYTHING is possible.

One of the first messages I saw on Facebook this morning contained such encouragement for Nora along with these verses:

Good morning, precious Nora!
It is a day that the Lord has made. We will be glad and rejoice in it.

God loves you. And his love began even before you were born! “You created my inmost being; you knit me together in my mother’s womb”
(Psalm 139:13)

Every minute of every day, God is thinking about you and planning good things for you.
(Psalm 139:16-18)

How precious to me are your thoughts, O God! How vast the sum of them! Were I to count them, they would outnumber the grains of sand. When I awake, I am still with you.

God knows you through and through – and loves you anyway. There is nothing you can do to make him love you more… or less. You are the apple of his eye!
(Zechariah 2:8)

God is with always with you, no matter where you go or what you face. You will never be alone; he is always with you in the midst of daily struggles and trials. “Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go”
(Joshua 1:9)

God especially designed you, just as you are.

God bless you precious, and may His face shine upon you.

======================

I got out of bed and fell onto my knees onto the cold floor in the dark, crying and thanking God for these words of truth and wisdom, for the knowledge that my baby girl had made it through the night.

I didn’t even realize until I just typed it out right now – – that last part: MAY HIS FACE SHINE UPON YOU.

HOW IN THE WORLD CAN ANYBODY POSSIBLY POSSIBLY THINK THAT SUN RAY THIS MORNING WAS A COINCIDENCE !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I have no more words. PLEASE watch this: