NICU Warrior part 2
On June 12th Baer took his first car ride in the back of an ambulance strapped down in a plastic box. Nothing can prepare you for watching your under a week old baby be put in a plastic box and taken away by a group of strangers in an ambulance. We watched our baby be taken away from the only place we had ever known him and all the sudden were alone in a hospital ward for tiny babies without one.
We loved our nurses and doctors so much and were nervous about meeting our new care team. I kid you not - within 3 minutes of setting foot in the NICU of Dell Children’s Hospital we felt so at ease (well as at ease as possible). The amazing transport team leapt into action started getting our Baer into his new room and making us feel comfortable. The first night was a complete blur of new faces, exams, regurgitating all the medical jargon about Baer’s case that we had learned so far, and taking in the new information and assessments.
The first full day we spend at Dell we met with several people who dramatically have changed our lives. Dr. Riley of the Nephrology team and Dr. Wang of the Urology team. Two badass women who care for our Baer almost as much as we do. It was that first day we heard the term “Prune Belly Syndrome”. It was like a whoosh of relief to finally have all the puzzle pieces fit together and see the picture that had formed. The combination of conditions - non existent or minimal abdominal muscles, undescended testes with abnormal urinary tract, enlarged bladder with dilation of the ureters, chronic kidney disease, even the clubbed feet! Together, these all made sense.
Once the relief of understanding subsided, the fear creeped back in. These were all very scary conditions individually, how were we supposed to coach our child through this medically complex life? Our doctors and nurses all took the time to sit with us and answer questions whenever they came up and even draw diagrams and give us mini chemistry and biology lessons so we could fully understand what each diagnosis meant, how it would impact him immediately and how it would present and change in the future. With each medicine administered we eagerly asked questions and watched so we would know what to do when we were on our own. When we went home at night we were researching things like “peritoneal dialysis vs. hemodialysis” and catheter ports. In an odd way, we were fascinated by constantly learning and being amazed by both the human body and medical advances.
The next few weeks we settled into a new normal. Waking up and getting to the hospital early so we could be there well before morning rounds so we could know his morning labs first and think of all our questions before the team came by. Spending all day in our cozy room 27 where we alternated cuddling him once his UVC/UAC was out, pumping, trying to feed him the bottle, and meeting with different doctors. Waiting till the 7PM shift change so we could meet our night nurse and find our what doctor was on that night, then stay to make sure they and Baer were all settled in together. Finally we would get home late enough to eat some kind of fast food in bed, then Mallory would wake up every 3 hours to pump over night so we would have more milk to bring back to the hospital to do it all over again the next day.
