Oh what a wonderful day! We’ve got ourselves a regular little Heavyweight here! Little Miss Six Pounds Five Ounces!!
The pulmonologist, Dr. Chini was wonderful and showed genuine concern for our little girl as a person – not just a diagnosis. As of yet we do not have any definitive answers as to why she was desatting relatively quickly when taken off of the oxygen. However, we were very pleasantly surprised and optimistic when Nora was able to stay at a reasonable saturation level today for the half hour that she was being monitored off of the oxygen flow!! They did dip down into the 70s a couple of times, but she was quickly able to bring it back up. I know that Nora reacts to her Mommy and Daddy’s voices and loving caresses, but it brought tears to my eyes to see a machine validate that. Any time we talked to her or stroked her head her oxygen levels would rise right up. How sweet it is to love this little girl and to know that she loves us right back.
In addition to the O2 monitoring Nora had a chest x-ray today (that she was NOT at all happy with!!), and is to have a sleep study and a swallow study done within the next few weeks. The sleep study involves an overnight stay and will monitor her breathing / oxygen while she sleeps. The swallow study will track the path of her milkies as she swallows to determine if she is aspirating any into her lungs. She will also have some blood work done to check the carbon dioxide levels in her blood (blood gas panel) and another test, which if I remember correctly is a renal test as it pertains to possible hypertension?
I’m so relieved to have left there today without any bad news!! God hears our prayers loud and clear. I give thanks and praise!!!!!!!!
Nora celebrated her 7 week birthday today with a warm relaxing bath when we got home and excessive snuggles with Mommy. Here she is in a pretty new party dress!
On another note, I want to ask for continued prayer for the Mummert family on their journey after the loss of their little Harrison, who had trisomy 18 as well. While our stories had different outcomes, they are alike in that our children are working together to bring so many people closer and into a relationship with God. One from heaven and one on earth, making sure they have all their bases covered! If you haven’t already, I encourage you to read their story and daily updates at www.harrisonjamesmummert.com. I especially enjoyed the photos from today – a beautiful celebration of Harrison’s tiny but mighty little life. God bless you, James and Emily!
Through the praise of children and infants
you have established a stronghold against your enemies,
to silence the foe and the avenger.
(Psalm 8:2 NIV)
iwillcarryyou 
I have sincerely enjoyed every blog post you do. I was so happy to read that Nora’s appointment went well! She is a gorgeous little girl! I try to make a constant effort to pray for her and your family. You have such a positive outlook on her life, it is truly inspiring. I hope Nora has a great day tomorrow and I’m looking forward to tomorrow’s update! (:
YEA!!!!!!!! 6 LBS. 5 OZ., THAT IS SO GREAT. WHEN I LOOKED AT THE BEAUTIFUL PICTURE OF NORA IN HER NEW PARTY DRESS, MY HEART ACTUALLY FELT LIKE IT SWELLED A LITTLE WITH EXCITEMENT. SHE LOOKS SOOOOOOOOOOOO ADORABLE. I HOPE ALL THE TESTS COMING UP IS NOT TOO TIREING FOR LITTLE NORA ROSE. MAYBE SHE WILL SLEEP THROUGH MOST OF THEM. SO GLAD THERE WAS NO BAD NEWS TODAY. PRAYING YOU HAVE ANOTHER GOOD DAY TOMORROW, AND CAN GET IN A NICE WALK AND A LOT OF CUDDLE TIME. GOOD NIGHT AND GOD BLESS.
Great news! Love the purple bow!!!
So happy for your good news; what a trooper that baby girl is!
Love that you could see that physical proof of how your love affects Nora, in such a scientific way. That had to be a powerful moment…seeing with your eyes what you already know in your heart.
How awesome that your voices and physical touch raise her O2 levels! Love conquers all :))
Hallelujah! ❤
Great news! She’s so adorable.
I am so very pleased that you have an EXCELLENT doctor. I can tell by the tests that he ordered that he does indeed see Nora as a child with a chance and a life worth preserving. It sounds like you dont have a SAT monitor at home. This might be something you should consider. It will enable you to understand Noras breathing a bit better and even turn the oxygen down if it is not necessary at certain times like when she is awake.
Way to prove the medical science people wrong!!!!! You have shown us what FAITH…LOVE…..HOPE can and will do. You rock little lady thanks for waking me up and seeing things through your eyes:) xoxo
Thanks for sharing Nora’s progress with us , I love to hear how well she is doing and just to let you know my grandson was born 3 months early and only weight 2.6oz , he was in hospital for 3 months after he was born and now this past May he graduated from highschool doing great.. I will Keep Nora in my daily prayers.. thanks for sharing with us
Sorry I meant he was on 2 lbs and 6oz at birth
I was going to offer me to help if you need it. Just house work or laundry so you can cuddle with Sweet Nora. I used to clean houses before I had my two little ones. Just let me know. Thanks for sharing your family with us.
so happy to hear she’s getting thumbs up from the doctors! always praying for her!
So happy to hear this news! I can tell by the pictures that her little face is filling out! 🙂 Yay Nora!!! Rejoicing with you!
We have 3 year old with Cystic fibrois and his pulmonologist is Dr. Chini she is awesome and really cares about everything. Really respects your opinion as a parent.
so glad you are being blessed with wonderful and attentive physicians! it is so difficult for people to see those with special needs/issues as individuals and not “disorders” or “handicaps”. My sister has a special needs child and is frequently at Cincinnati Childrens Hospital–if you need anybody to resource to, i’m sure she would be happy to oblige. let me know if you need any help!
faithkollen@tampabay.rr.com
Nore is clearly a rock star in her party dress! I chuckled aloud at the two-week loss of electronics for your son as I find that this punishes the grown-ups in the house much more than our darling boy.
P.S. Please share with your sweet husband that even though we’re grown up now I still feel compelled to call him “Billy”, like back in the day.
Much love to you all,
Marti