Mysteries, Victories, & Fun

As I sit in our apartment holding Julia and listening to Kaitlyn & Claire talk to each other like they’re in a musical (to the tune of “Sixteen Going On Seventeen”), I am so grateful we have survived this adventure so far. 

As I said in my previous post we were moved to a private room. This private room was in the mysterious 10 South wing of the hospital. Now you may be asking what made it mysterious. We were told 10 South is where we would go before she was discharged. We’d have a private room with a window seat for one of us to sleep on overnight, and our own bathroom with shower. We started in the Surgical ICU then went to the Neonatal ICU. During Julia’s last couple of days in the NICU we heard she would get moved to 10 South. Everyone raved about it. How great it will be to have a private room, how knowledgeable the nurses are with the Spica cast she’s in, how happy we’d be. So we were intrigued. Being parents of a NICU graduate (Kaitlyn was a preemie for those of you didn’t know) Sean and I were happy in the NICU. We knew how things were done, how scheduled everything was, how thorough everything was recorded, and the attentiveness of the nurses. But again, everyone said we’d love 10 South. 

We were moved last Wednesday night.  We went from a nurse at Julia’s side all of the time tracking almost every move to being in a room by ourselves to take care of our sweet baby with check-in’s about roughly every hour from a nurse. After a very long, exhausting night I was ready to go home. Julia’s amazing urologist came in to check on her and I asked what I needed to do to go home. Julia needed to have her PIC line & feeding tube out, eat well, grow, and continue to heal from her surgery. Well I guess Julia was ready to go too because she met all of those requirements (Yay!). 

So Saturday we received the confirmation Julia was getting discharged A huge victory! Our nurse was amazing in getting everything ready for us (a nice gift bag full of supplies for us to take care of Julia at home), and making sure we didn’t have any questions. Then we broke out of there! It was great timing too because Kaitlyn, Claire, Papito, and Mimi were only a few hours away from our apartment. 

This week has been filled with lots of family time. It has been wonderful having our little family of five all together again, and of course having Papito and Mimi too. We have all gone to Julia’s follow up appointments which have gone well, went on a quick scavenger hunt, played outside, visited the science museum, & went to a Redsox game. This week has been so much fun and I’m sad to see it ending so soon. 

Now we wait. The next big day on our calendar is the 27th. Between now and then we just need to continue to let Julia heal, eat, & grow. On the 27th she will have an ultrasound and x-ray to make sure her bladder has healed then do some trials without her SP tube draining her urine to see if her bladder can do what it’s supposed to. If all goes well we are hoping to be HOME towards the beginning of May. Thank you for the continued thoughts and prayers. We cannot wait for everyone to meet her! xoxo, Tori

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.