Testing 1, 2, 3

Thursday was a big day for Julia. Her urologist, Dr. Borer, gave her bladder a test to hold urine and also to see if the urine would come out the old fashioned way. He plugged her SP tube so it would stop draining and left it like that while we went to get her Spica cast re-lined. When we arrived back we checked for urine in her diaper which was inconclusive because she had pooped (she is a little poop machine). Dr. Borer then checked to see if her bladder had held urine during that break and it did (see picture)! Yay for pee! 

After the Urology appointment we all took Julia to her pediatrician appointment. We wanted to make sure we were also keeping up with all of the normal newborn check ups. Her doctor was happy to see Julia doing so well and admired Dr. Borer’s work on Julia’s bladder closure surgery. During that time we saw a little trickle of pee come out, hooray! 

Her next urology follow up is on Tuesday and I imagine we will do another test. She will also have an opthomology appointment next week, and audiology before heading home. Prayers that all of her appointments continue to go well and that she continues to heal are appreciated. We cannot wait to bring her home to Charleston!

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