Nora – 94 Days Old

I’d meant to do a followup on yesterday’s post, but now it’s so late in the day that I may as well just go on to Day 94!

It was the strangest thing waking up this morning. I laid there in my semi-awake state bracing myself for the lead boulder that usually comes crashing down onto my chest. It wasn’t there today! I waited and waited — nothing. Aaaah!

As I stated yesterday, I was at peace with the decision we were given regarding Nora’s ineligibility for heart surgery. I will try to give a summary of the hows and whys as best as I can in my very limited medical intellect.

We sat there waiting for probably only a few minutes, but what seemed like lengthy hours for Dr. Hirsch to come in. As he finally entered the room, I was intent on studying his body language trying to ascertain what the answer was. He seemed confident and he was smiling. There was no indication that he was about do deliver us any bad news. I was nervously hopeful, hanging on to his every word, his every movement, barely able to breathe. He went through his list of questions for us, wanting to know if anything had changed since last week with Nora. Other than her cold, there was nothing new to report. She was still not showing any symptoms of congestive heart failure. By the way her heart is operating, theoretically she should be experiencing at least some symptoms — but she’s not. After a productive debate with the surgeons, it was concluded that to perform surgery on Nora right now may end up causing more harm than good. It could potentially open up a Pandora’s box of trouble. This decision is the same decision that would have been given to a child without trisomy 18. I do not believe that Nora was discriminated against in any way. Our next step would be to administer sildenafil (while in the hospital under close supervision) which would relax the blood vessels in her lungs. They need to see if by doing this she would then show symptoms of congestive heart failure. This would indicate whether or not the VSD is causing her pulmonary issues.  If the VSD is NOT causing her pulmonary issues, the surgery would be pointless.  Her heart is otherwise doing its job. The VSD by itself is not a fatal condition.

I hope I explained this correctly? Kinda wish I would have gone to med school. (If anyone needs any critical answers or emergency explanations in regard to art history, I might be able to help you out.)

I can’t tell you how much I appreciated Dr. Hirsch’s genuine concern and his compassion for us and especially for Nora. My heart swells with gratitude. He is not only an exceptional doctor, he is also an exceptional man. The prayers that the right people would be there at the right time for us continue to be answered.

It was suggested in a comment yesterday that sometimes the not knowing is the worst part, and yes, I would have to agree with that in this instance!!! A comfortable awakening with the unmistakeable presence of peace was upon me this morning. Then the confirmation that we were headed down the right path came about in the form of the THREE woodpeckers tapping on our roof this morning. One? Okay. Two? Sure. But no. There were THREE. Too uncanny to be coincidence!!?? God couldn’t be more obvious in our lives than if He were sitting here at our kitchen table.

We have a great week planned ahead of us without any hospital visits – a much needed respite!

Here are some sweet pictures from today!

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Women of the Tiny Hat Society

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Muthr cuddles

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Compatible with love…

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… and with milkies!!

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Winding down the day with an evening walkies.

Goodnight and thank you for your love and prayers!!

12 thoughts on “Nora – 94 Days Old

  1. I REALLY FELT IN MY HEART THAT THINGS WERE GOING TO WORK OUT. I AM SOOOOOO HAPPY THAT THE NEWS WAS ACTUALLY GOOD. NO CONGESTIVE HEART FAILURE IS REMARKABLE NEWS IN ITSELF. I AM SO HAPPY TO SEE YOU SO MUCH MORE RELAXED. THE PICTURES OF THE GIRLS WITH THEIR MINI HATS ARE SO CUTE. NORA DOES NOT SEEM TO MIND WHAT SISSY DOES TO HER. SHE JUST PLAYS ALONG WITH HER BIG SISTER. LOVE THE PICTURE OF YOU AND NORA. I CAN FEEL THE LOVE BY JUST LOOKING AT THAT PICTURE. LOVE IT!!!! GLAD YOU GOT IN A NICE WALK TODAY AFTER A HARD WEEK OF WAITING FOR THE NEWS. LOOKS LIKE THE NICE WALK WAS QUITE RELAXING FOR NORA. LOVE THE PICTURE OF HER IN HER FRILLY LITTLE SKIRT. ALSO LOVE THE STORY ABOUT THE WOODPECKERS. SEEING 3 WOODPECKERS AT THE SAME TIME IS PRETTY AMAZING. WE CAN GO FOR DAYS AND DAYS AND NOT SEE A WOODPECKER. I AM SO GLAD GOD GIVES YOU THAT SIGN THAT EVERYTHING IS GOING BE ALRIGHT. LOVE YOU GUYS AND HOPE YOU GET REALLY A GOOD NIGHT’S SLEEP. GOOD NIGHT AND GOD BLESS.

    • Pretty much what ethyl said!!! ❤ you guys, thanks for filling us all in with details! PS I love how chubby Nora is getting!

  2. She just gets prettier every day…and I love her outfits..such a fashionista! Prayers and blessings to everyone.

  3. “Praise God, from Whom all blessings flow”! You, your family and precious Nora are such a blessing to me and to countless others! Praise God for your faithful service, commitment and love! Praying for God’s peace that surpasses all understanding for you guys!

  4. Your baby is so stinking cute!! I’ve never posted before, and I promise I’m not crazy! I just can’t get over how pretty she is, and “her” constant reference to “milkies” amuses me daily! It’s weird, but it’s hard for me to imagine my life without her, even though I don’t know you at all???? The “compatible with love” onesie makes me want to cry. Thank you so much for giving a voice to these fragile and precious children. The medical community doesn’t always see them for the special little people they are in utero, when these diagnoses are made. I can only imagine how God is using Nora to mold and change some of that in her doctors and nurses!

  5. I am so glad to hear you have His peace as you walk this path. And continuing prayer for all of you. LOVE all the pictures of Nora. She melts me.

  6. Pingback: Sparrows | iwillcarryyou

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