The Homestretch

Our Normal
This week Neriyah went from being the lone princess in the NICU to sharing her space with two other babies. One of the families had taken their little boy home healthy but ended up in the NICU because the mom was having some trouble breastfeeding which resulted in her baby having jaundice. These sweet first-time parents were beside themselves having to leave their little guy. They asked numerous questions and even tried to sleep in the lobby just to be nearby...my heart absolutely broke for them as I realized in watching their tears that this place was not their "normal" as it had become for us. We are so accustomed to being in this space that we are able to reattach monitor leads, use the scale to weigh our babe (in both lbs and grams), take her temperature, and find any miscellaneous supply on demand. More importantly, we have felt like partners with the care providers from the nurses to the Neonatologists.

Breaking up is hard to do...
Tomorrow we will likely bring our little girl home! After I finished the feeding tonight, I realized that there were NICU staff that I may not see again. As I said goodbye to Neriyah's nurse, Ricci, I began to cry. I realized these women have become part of our family...and leaving them is going to be bittersweet.

Eating like a Champ
Over the course of the last few days the NICU nurses have been working hard to feed our daughter to ensure that she comes home before the New Year. First, her feeding tube was removed which allowed for every feeding to be either by breast or bottle...a huge step! Neriyah was also lowered off her high-calorie breast milk fortifier to a 22 cal. version that more closely mimics the nutritional value found in straight breast milk. The reduction was made to see if she would still gain weight...and she has done very well...now weighing in at just over 5 lbs.

Call Me Anytime
I knew they were thinking about sending her home when they performed the hearing test as this is a standard assessment before discharge. They also informed us that they were planning to do the VCUG to get a better understanding of her kidney issue and a bone X-Ray (to see if there was any calcium on her bones which could be an indicator of a skeletal syndrome). As I sat with Neriyah yesterday, knowing that these tests were scheduled for this morning, I couldn't shake that internal sense that she did not need all of this testing and that we needed to talk to the doctor about her exposure to radiation before moving forward. After talking with my mom and a friend whose son has had kidney issues, I had a better sense of clarity about the questions that I needed to resolve prior to moving forward. I called the NICU and requested to talk with Dr. Jacinto, the Neonatologist. They called back and gave me her HOME phone number...oh gosh...her home number...right...yep...I called. Dr. Jacinto answered enthusiastically "Hi Michelle!" and begins telling me how wonderfully my daughter is doing and then answers my questions about the upcoming tests and agrees that the bone scan (not ordered by her) was NOT necessary and called the NICU to cancel. Before we got off the phone, the doctor says "now you have my home number, you can call me anytime." Love the care we have received!

All Clear
The Kidney test report came back tonight...clear! Not sure what has caused her left kidney to carry a bit of fluid (making it slightly larger than the right) but hopefully this is something that she will simply outgrow.

Every Request...Answered
We want to thank each of you again for the time that you have committed to praying for our daughter. We are in awe at the way in which Neriyah has been healed...and we're pretty sure our doctors are wondering "what the heck happened?" I think the explanation for this case is going to be a tough one to find in the medical books.

With Love and Grateful Hearts,

The Kings