Pull the tubesĀ 


You see that orange tube? Guess what, it’s gone! That lovely feeding tube that was helping her get the nutrients she needed has been removed. Julia has gotten her energy & strong suck back and has been eating beautifully. 

She also had a PICC line (peripherally inserted central catheter) in her right arm that was removed today. It stayed in an extra day in case she spiked a fever after having two more tubes (ureteral stents) removed yesterday. Thankfully she showed no signs of infection allowing that PICC line to be removed.

So now we are down to one lonely tube, the suprapubic (SP) tube. This tube comes out her belly button, or Borer button as we like to call it, to drain her bladder. During the next three weeks we will watch closely to make sure it continues to drain nicely and eventually the urine making its way out like the rest of us. 

Julia was moved to a private room last night. She has enjoyed the peace and quiet, a big change from the NICU. This new floor is a stepping stone to us taking her “home” to our apartment here in Boston. It’s to make sure Sean and I are comfortable taking care of her with her new requirements. And let me tell you, we got this. Diaper changes are a little more challenging, we have more areas to watch and keep clean, feeding and burping is a new challenge, and of course monitoring the SP tube and urine output, but it’s nothing we can’t handle. So assuming everything continues to look good we will get discharged Saturday and I can’t wait! 

Thank you again to everyone keeping Julia in your thoughts & prayers. We’ll keep you posted about us breaking out of here this weekend. xoxo, Tori

One month

It’s hard to believe little Julia has already been with us for one whole month. She has brought so much joy to our family already!

Today I was finally able to hold her again. Having not held her since Tuesday morning before her surgery, I was one happy Mommy! We have started feeding her bottles again too. We are starting slow which is why she is now rocking that lovely orange feeding tube in her right nostril. It was a little bit of a rough start for her yesterday, but she did amazing today. If she keeps it up that tube will come right back out. 

Her two big sisters came to visit over the weekend with Grandma & Grandpa. They were such big helpers. Kaitlyn and Claire held her hand, talked to her, and made sure the doctors and nurses took excellent care of her. The visit went by way too quickly, but thankfully we only have to wait a week before they come back. This time bringing Papito and Mimi with them. 

Fresh air

Julia is recovering nicely from her surgery. We are happy to report they were able to extubate her this morning and she is currently breathing very nicely on her own. Seeing her looking around, breathing on her own, and wiggling was the highlight of our day. 

The team at Boston Children’s Hospital has been great with giving Julia the best possible care. She is currently hanging out in the Neonatal Intensive Care Unit while they monitor her breathing, vitals, and get her eating again. 

Another exciting report, our little family is back together for the weekend. Kaitlyn and Claire were thrilled to see their baby sister, and were great visiting in the NICU. They both asked the doctors and nurses great questions and comforted Julia while she was getting examined. 

Next up is transferring Julia to a regular floor sometime this weekend, then looking at removing a couple of the tubes from her surgery later next week. If all of that goes well then we’ll be able to bring her “home” with regular check-in’s for a few weeks before finally bringing our new little princess HOME to South Carolina. 

Thank you again for keeping her in your thoughts and prayers! It’s certainly helping! xoxo, Tori