January 9th

I squeezed my husband’s hand, as he prayed out loud over my round belly. Moments later, the warm yellowish fluid accumulated into the sterile syringe. Shallow breaths, and the fears of “what if” pulsing through my mind. “These things only happen to OTHER people!!?” I frantically reassured myself. We left and we waited and we waited. Five never-ending days later, January 9th at 1:30 pm, the phone rang. We hadn’t thought to be together on the expected day of the call, because certainly “everything was completely fine.”

2012.01.26 001

My eager optimism was shattered into a million pieces as the geneticist sorrowfully explained to me that our baby’s amnio results showed a triplicate of the 18th chromosome. Trisomy 18. I don’t remember anything else she said as I crawled screaming out of the bathtub into a hysterical heap in the middle of the bathroom floor. I laid there numb, with my heart ripped out of my body. Why. Why. Why, oh, God, WHY. In those fresh, horrible moments we suddenly became trapped in a world of horrible and vague uncertainty. There would have been no way of knowing what a precious gift lay curled up, snug inside me. That I regarded her as some terrible genetic disaster makes me weep sad and bitter tears. I won’t beat myself up over those illogical apprehensions. How could I have known otherwise? As the agonizing layers of days, weeks and months were peeled away, our gift was revealed.


Not a diagnosis. Not some horrible anomaly. A beautiful, precious, angelic, amazing, wonderful and perfect little girl. She might not have been perfect according to medical standards, but she was beyond perfect in our eyes. As I look back at today, 2012, my eyes well up with tears. Yes, I’m sad to have said goodbye to my own hopes and dreams of a “typical baby”, but once I held Nora in my arms, there was no other baby I would have traded her for. God had a much greater plan for me – for all of us.

I love this quote by Pope Francis that my friend Maggie shared with me this morning:

“Health is certainly an important value, but it does not determine the value of a person. Furthermore, health in and of itself is no guarantee of happiness: for this may occur even in the presence of poor health. The fullness towards which every human life tends is not in contradiction with a condition of illness and suffering. Therefore, poor health and disability are never a good reason for excluding or, worse, for eliminating a person… A society truly welcomes life when it recognizes that it is also precious in old age, in disability, in serious illness and even when it is fading; when it teaches that the call to human fulfillment does not exclude suffering; indeed, when it teaches its members to see in the sick and suffering a gift for the entire community, a presence that summons them to solidarity and responsibility.”

How blessed I am to KNOW this firsthand. Thank you, God. Thank you, Nora.

Hospital – Days 10 & 11

The past couple of days have been very, very difficult. Yesterday Nora had terrible withdrawal symptoms and high fevers. There didn’t seem To be any answers and we couldn’t get things under control. She is finally sleeping after being awake and agitated for 32 hours straight.

In an attempt to find the source of the fevers they opted to do a CT scan just to cover all of our bases and make site we weren’t missing anything. We were told it probably wouldn’t show anything, so not to worry. (Because we all know how much worrying helps things.)

We were initially told that the spot of fluid was on her stomach, but as it turns out the spot is on one of her lungs. It is unrelated to her stomach issue. An ultrasound revealed that it IS able to be accessed for obtaining a specimen of the fluid, but also showed that the fluid does not look to be clear which can be an indication of infection (as would her fevers and elevating white blood cell count). If it IS infected she will need surgery to drain it, which possibly means another intubation. Obviously we would want to avoid that. Silver lining scenario… Maybe this all happened with her belly to reveal a small but potentially worsening problem on her lung. How else would we have known?

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
(Romans 8:28)

Just wish God didn’t have to go and be all DRAMATIC about it!

Please pray for Nora. We have another long day ahead of us… And she’s waking up crying again…

Post Surgery 1 / Pre Surgery 2 – Day 3

Nora had another very good night. Her heart, lungs and kidneys are all performing exactly as they should be. Yesterday afternoon a part of the surgery team commented that if there were an excess of dead tissue in her body – it would be reflected in other areas. That is not the case. She is doing exceptionally and surprisingly well. They are very optimistic that when they open her up again this afternoon they will see nicely profused, wonderful PINK!

Surgery was originally scheduled for 9:00 this morning, but because of a conflict between the cardiac anesthesiologist and the surgeon we’ve been bumped back to 2:00 this afternoon. We were initially a little bummed out about this, but as William commented – maybe God needs this extra 5 hours of healing to take place. God’s timing is perfect. Another huge lesson I’ve learned through all of this.

I remain confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord. (Psalm 27:13, 14 NIV)

As I was driving home last night to grab some odds and ends I passed an electronic billboard along the highway. I have no idea what it was advertising, but the bright pink glow and the words THINK PINK in bold white font immediately caught my eye. I caught my breath as tears welled up in my eyes and a big smile spread across my face, “YES! Yes, I will!!!”


Post Surgery

The organized chaos prior to surgery:


Nora just underwent emergency surgery for gastric volvulus. Somehow her stomach flipped on itself and was obstructed. She was in surgery for about an hour. The surgeon came out afterward and informed us that the condition of her stomach was initially very bad. They allowed it to rest for 10 minutes instead of drastically deciding to remove it. When they re-examined it, it DID pink back up in some areas but not all. They have done a partial closure so they can go back in tomorrow, 2 days, 3 days(?) to see if it has revived any more. At that point they will make the decision to remove any parts that are necrotic. We are PRAYING for full tissue recovery, that NO parts will need to be removed. They will also place a g-tube in her belly to prevent any future episode of her stomach twisting. This will “anchor it down” as it has been explained to us. She has quite a steep road to recovery ahead of her, but as our dear friend Tommy reminded us: STAY FOCUSED ON THE PRESENT. I think it was Proverbs 4:25 that he quoted, “Let your eyes look directly forward, and your gaze be straight before you.”


Every Little Thing is Gonna Be All Right


I am in awe of all of your encouraging texts, comments and messages, your PRAYERS are so comforting and they are MOVING MOUNTAINS!!!!! I’m so sorry I can’t respond to each and every one right now. I thought we’d be coming up here maybe for some IV fluids…. Had no idea things were this wrong. Trying to catch my breath and get my feet back on the ground after this frying pan upside the head!

Emergency Surgery

Nora is going into emergency high risk surgery. Her stomach seems to have turned and is obstructed. She is intubated, sedated and stable right now, surgery is any minute.

Nora early this morning:

Prayers are hugely needed and appreciated.

Silly Fingers

Another beautiful sunrise! My 3 birds are in the top left of the v-shaped tree on the left! :)

Satisfy us in the morning with your unfailing love, that we may sing for joy and be glad all our days.
(Psalm 90:14 NIV)

I’ll let Nora tell you about her busy day:

Oh, tank you very much, Mommy! Yeah. I had a busy day today, alright! I had physical therapy first thing. I really like therapy. They always come up with some fun things for me to do! Today I got to play with some pencil grippers. I know that sounds strange but I didn’t think so at all! I got to wear them on my fat little fingers and they were soooo interesting!
Yeah, let me get a closer look at things here:
That’s kinda funny, huh!
I think I could place orders with these things.
“Um, I’d like TWO milkies please?! TWO.”

I was worn out after therapy!

I got my last Synagis shot this afternoon!! I wasn’t at all happy about someone poking my fat little leggie with a needle and I don’t understand it when Mommy tries to explain it. I cried a lot until I got myself all sleepy again. Before my shot they weighed me. I’m a 14 lb. 4 oz. big girl if you can believe that!!!

What else is hard to believe is that when I woke up from my nap I was the happiest, squealy-est little thing anyone’s ever seen. A much better state than when went down! I just made everyone smile all day. I’m THAT sweet!!





“Who? Wha.. What time is it!!???”

“No! This isn’t what I like! This look went out of style in the 1700s!!”

“I don’t have time for bubble wigs. I have places to be and cousins to meet.”

“It’s time to meet my cousin now.”

“Oh, hi, cousin! You sure are little!”

“The sun is setting in the sky. Little cousins say goodbye!”

“Bye bye, Baby Parker! I can’t wait to see you again!”


“Brudder and sister are taking off to school again.”

“I get lots and lots of loves and cuddles from Mommy while they’re away.”

“Poor Crockett waits patiently for any love that might spill over onto the floor.”

“Yyyayyyy!!! Time for baffs!!!!”

“Kbye! I love all of you!”


Thanks, sweet Nornor! :)

I’ve had every intention of updating nightly, but obviously I haven’t been so able to do that. I will continue to update as regularly as I can with the goal of getting back to the nightly/daily posts!

It’s not a good indication of how the day is going to go when one of the kids shows up at the bedroom door hyperpuke-illating all over the place. The answer to my question of, “What’s that noise?” was quickly realized and I suddenly found myself trying to reroute poor Greta into the bathroom while hurdling puddles of puke.

Obviously she did not go to school today and has been feeling rotten all day long and on into the night. We hope and pray this is only a 24 hour gig and that the rest of us can escape it.

I’ve dusted off the boxes of surgical masks from our rendez-flu back in January, been scrubbing my hands raw, and Lysol-ing the heck out of this place. Ughhh. We ALMOST made it to Spring!!! I sincerely hope and pray we didn’t infect my sister’s family while we were visiting.

Thank you so much for your prayers, kind words and encouragement and offers for help on Nora’s FB page! We had nursing help today so I was able to get out to get what we needed, which of course coincided with the threat of snow. So yes, I appeared to be one of the panic-stricken yayhoos depleting the shelves of bread and milk in true tri-state fashion!

We sooo appreciate all of you!



My reminder of the day:

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