I smell fall…
In the mornings the air is crisp, and the leaves will soon change…bring on fall time!
It’s been a gift to have our sweet girl home but we also are still adjusting and catching our breath.
Family update: We’ve had a desire for a while to be closer to family and to have more space for Jed to run and play outside our small city yard, to be closer to some of his cousins. With all that has happened we feel this is where God has been and continues to guide us….now is the time for us to walk in that direction.
So this past week we moved closer to family north of Atlanta. There are aspects we are excited about with this change and others we are sad to leave, but ultimately feel at peace with the change as part of Gods plan for us. So we’ve been a little busy to say the least...adjusting to this baby girls schedule and needs and packing and moving. Jeds been a champ, we know it’s all been a lot for him…..and we continue to pray for him in this transition too. It’s A LOT! It’s been A LOT ….since March....and that’s why I keep saying “Bring on fall time” my favorite time of year! I’m ready for it! For the pumpkin bread and lattes, cool weather, leaves changing , and all the holidays that bring family together! We are so grateful for the support and time with our family. I’m not sure we’d survive this season we are in without them.
Rory’s Health: Aurora has slowly been gaining weight ..about a 1/2 ounce a day....praise God! But it’s so hard not to worry over all the little things. She’s almost two months old now …and just creeping up on Jeds birth weight 6 lb 11 ounces. Our itty bitty warrior!
She does so well nursing but has a hard time with the bottle now that she can nurse..she mostly screams and spits up bottle feeds…but the doctors want her to take a bottle for roughly half her feedings to get nutrients from the added special formula both for weight gain and for her liver repair. Prayers we can figure out how to get this girl to do better with some bottle/formula feeds! And for mama to not get so stressed out over it! Ultimately ….she is gaining weight! so she’s growing!
Also praying for Auroras liver and spleen, both are still very enlarged and healing. We had our first CHOA (Childrens Healthcare of Atlanta) out patient visit with a few of the specialist we’ll be seeing for her, we were there ALL day... but it was a great experience. Great staff and doctors and beautiful building. The overall customer/patient experience once there (scheduling our initial visits was another story ;) was a really good experience. And my marketing/brand brain was reminded how much customer experience and putting the customer/patient needs first (even in building design and process, and training staff) is so important and makes all the difference. Especially when in such a high stress situation (I.e. having a newborn with health concerns in a pandemic..) One visit to CHOA and I’m already think I’m going to be a raving fan...which is good b/c we’ll be there a lot.
I also was very encouraged by what Rorys hepatologist said. Even though Rorys liver is not great now...the doctor said “ she’s doing great mom, after reading her 16 page discharge of her history and conditions-I was not expecting to see this at all today….(pointing at Rory) all things considering she’s doing really good” my eyes started to fill with tears. Praise God! Our little girl is thriving the best she can! When reading her “file” I think most doctors expect a “vegetable” baby, hooked up to lots of things, especially with her MRI findings/diagnosis ....and we know she may never be “normal” but she is surpassing the expectations put on her and we are so proud of her. Thanks be to God! We keep praying for miracles for her! Big and small as she develops.
Prayer support: Transition for all of us and Jed! For Rorys liver, spleen, weight gain and ongoing for her brain growth and development. We don’t see the neurologist until October..so continue just to pray over her precious little head and brain! And prayers for the next blood draw we have to do this week. They have a lot of labs they need to do on her and couldn’t get enough blood this week. Her veins are too bruised and tired. So they will try again next week. (Prayers for mom during that part too! blood draw on a new born is hard…But mostly prayers for Rory…for no pain…and good flowing veins for the blood work they need).
Friends/Family- thank you again for continued love, support and prayers for our family and our precious Rory Rose ! We still feel so cared for and loved and hope we can pay forward all the outpouring of love we have and continue to receive.
