“I missed you, sister!!!”
We are home! Nora was discharged from Children’s this morning with a very good report. Her latest echo has showed IMPROVEMENT in the left ventricular function (pause to really let that sink in). I am rendered speechless and amazed, once again, although I’m not sure why. I KNOW the power of our God!!! Nora’s head scan came back normal. All labs came back normal with only her thyroid levels being on the high side of normal. Her heart rate is still elevated into the 170s, but her doctors are confident we will be able to get it back down. As her heart rate is elevated when she is fussy, we are trying to eliminate her causes of fussiness. One of her big complaints is gas pains so we’ve decreased the calories of her milkies from 26 calories to 20 calories (which is the normal calorie) in the hopes that it will be easier to digest. She’s clearly gained enough weight now to where that isn’t so much of an issue anymore. Another fuss buster attempt is decreasing her Sildenefil dosage. One of the common side effects of this medication is headaches! Hopefully these measures will at least keep her heart rate out of the dangerous levels while we figure out how to get it back down to where it was.
“Mmmm. Milkies.”
“Is it time to go home yet?”
“Oh. I guess it’s time for an echocardiogram instead…”
“Oh, hi!”
One of Nora’s friends Robin J suggested the possibility of the recent Synagis shot being the cause of the elevated heart rate. We did mention that to the doctor. He said that certainly could be a possibility and definitely wouldn’t rule that out. Her last dosage was higher than previous instances because of her weight gain! Fortunately that was her last Synagis shot for the season!!
Another friend suggested low iron count as the culprit. We also brought that up but were reassured that her hemoglobin counts were all right where they should be.
Thank you all, so very very much for your prayers, your love and support, texts, voicemails, emails, FB comments and messages. Mom, Dad, Abby, Terri, Amber and everyone who offered to help us through these unplanned past 3 days, THANK YOU!!! YOU ALL ROCK!!!
Gavin and Greta’s message, “We miss you, Nora Rose!” sent from Amber to Mommy’s phone:
Nora’s message she sent back to them:
Before it’s Christmas again, I will go ahead and post pictures from Easter that I’ve been meaning to get up. There is so much I want to say, but if I don’t get some sleep here I won’t be doing me or anyone around me any favors!
The LORD is my light and my salvation whom shall I fear? The LORD is the stronghold of my life of whom shall I be afraid?
(Psalm 27:1)
Tomorrow is going to be an especially hard day for my family as we say goodbye to my Uncle Bill. Please keep us in your prayers, especially my Aunt Margie and Bill’s family and friends. ❤
Whatever you do, do well. For when you go to the grave, there will be no work or planning or knowledge or wisdom. I have observed something else under the sun. The fastest runner doesn’t always win the race, and the strongest warrior doesn’t always win the battle. The wise sometimes go hungry, and the skillful are not necessarily wealthy. And those who are educated don’t always lead successful lives. It is all decided by chance, by being in the right place at the right time. People can never predict when hard times might come. Like fish in a net or birds in a trap, people are caught by sudden tragedy.
(Ecclesiastes 9: 10-12 NLT)
iwillcarryyou 
So happy she’s back home. Get rest Mommy; you must be exhausted. The girls look beautiful in her smart dresses . Muuuaahh
I bet she missed her baffs! Glad all of our prayers are being answered! Keep getting better Baby Nora! And get some much needed sleep Aleisa..
Glad you are all back at home-I am sure Greta and Gavin and especially thrilled. My heart goes out to your family on the tragic and sudden loss of your uncle. God Bless you all. Loved the Easter pics!!!
Praise God for the IMPROVEMENT on her left ventrical! This girl is powered by prayer 🙂
So happy the little Miss is home. Your children are all so beautiful, you can see how much they love Nora. Prayers are with you always
Glad Nora has been “released”! Praying her little heart rate will return to normal soon. And yes, many prayers for my dear friend Margie and her family…let her know we are thinking about her today and always.
your babies are beautiful
Glad you’re home! Your kids are so cute..love the Easter pics. So, the docs don’t think Nora’s elevated thyroid levels have anything to do with the rapid heart rate? Wonderful news about the 2D echo results! Prayers continue for your family.
So relieved the Nora is home and improving! Also glad to see that my favorite fashionista got to celebrate first Easter in high style! Beautiful baby and beautiful family! Praying for all of you and for your extended family through this bittersweet time miracle and tragedy !
I’m so grateful that I found your blog because it has blessed me in a big way just to know that a Sister in Christ is on such a similar journey… Our little girl, Grace is 7 months old, has t21 and some serious heart defects (unbalanced ventricles and a complete av canal defect). She has had two open heart surgeries to date and Lord willing will have at least one more big one in the next 6-12 months (we live in Texas, but our last surgery and future surgeries have been in Boston). I have an older daughter, Abigail (almost 6 years old) and a 4.5 year old son, Andrew. While this journey has certainly been HARD, it has been awesome in a way that only God can make it awesome :-). My reason for posting is to let you know that we are praying for Nora! Also, I’m sure the cardiologists have already considered all of the variables to try to find out why Nora’s heart rate went up, but in the hospital last month, Grace’s heart rate would go up if her fluid balance was off… They were giving her lasiks to pull the fluid off, but then her veins would get dried out, so they would have to give her fluid back and so on. It was a fine dance with fluid balance, so I’m not sure if that is a possibility with Nora or not, but thought I would share just in case :-). If you don’t mind me asking, what type of heart defect does sweet Nora have? I thought I remember reading that you got second opinions about heart surgery for Nora, was Boston one of the places that you got a second opinion from? Blessings!
NORA IS HAPPY EVEN IN THE HOSPITAL HOOKED UP TO THE EKG. SHE IS ONE BEAUTIFUL, HAPPY LITTLE GIRL. I LOVE THE EASTER PICTURES. ALL THE CHILDREN LOOK SO CUTE AND SWEET ALL DRESSED UP. LOVE THE PICTURE OF NORA THAT SHE HAS THE LITTLE YELLOW HAT AND DRESS, PLUS HER LITTLE RUFFLE SOCKS AND HER SHOES. SHE LOOKS SO BIG IN THAT PICTURE. I DID REMEMBER TO PRAY FOR YOUR UNCLE BILL’S FAMILY WHILE I WAS GONE. AGAIN, I AM SO SORRY FOR YOUR FAMILY’S LOSS. ALSO I ALMOST FORGOT TO SAY HOW CUTE NORA LOOKS IN HER LITTLE RUFFLES. THE PICTURE OF YOU AND NORA IS GRRRREAT!!!!!! WELL GUESS I WILL END WITH THAT. LOVE YOU ALL. GOD BLESS.