As anyone can imagine, having a baby in NICU is a stressful temporary circumstance. Within the past days I've significantly dropped in my motivation to do anything but see and be with Bella.
Over the past few days we realized her neonatologist/pediatrician wasn't checking in on her. We didn't think much of it until we asked the nurse last night what the new orders were from him. Since they moved Bella from an incubator to a crib and from Room #2 to Room #1, we've noticed a severe lack of interest in her progression towards coming home. The doctor used to see her every day beginning in the morning. After she was moved, she was lucky to see him in the late afternoon... if at all.
When we saw the nurse fumble around and repeat to us the previous days orders, we, alongside the nurse, realized that the doctor had not seen Bella and, thus, had not written anything new for her orders.
Miles and I steamed. Well, Miles steamed. My stress and my anxiety only propelled me into a spiral of sadness that my baby wasn't being taken care of in NICU. In NICU. All I could think about was how helpless she was lying there alone, unable to speak and these nurses are ignoring her (not the same nurses we were promised) and her doctor doesn't even look at her! We're all waiting for her heart to show signs of failure. That is something that must be constantly monitored. Why was no one doing anything?!
Of course we made a plan to go in and talk to good ol' doc that next afternoon. When we'd walked in, a nurse was (we're convinced) staged by Bella's cribside. Politely she asked if we had any questions and we in fact did. After I asked, "So her respiratory rate is continually high and we're waiting for it to lower to even attempt bottle feeding. What if it never drops?" For some reason this stumped her. She began fiddling through Bella's notebook and couldn't find any information to suffice and began rattling off irrelevent tests that took place on the day of Bella's birth. We know all that... and right now, it's irrelevent.
Immediately after Miles began to push her more, she ordered a chest x-ray to look at Bella's lungs and heart for any signs of congestive heart failure as well as a handful of lab tests.
She promised us that Dr. Benn would be in at the earliest (these three words are important) at 5:00 PM. He was currently in clinic and wouldn't be up to finish his rounds until 5:00, again, at the earliest.
Miles and I walked out since we'd been pushed into the corner of the NICU room by the flock of nurses who magically appeared to pursue tests for Bella. We decided to come back at 5:00.
By 5:20 we were at the hospital, in the lobby washing and sanitizing, and on the phone calling in to be authorized to visit Bella. When we met with Bella's nurse, she informed us that we "...just missed Dr. Benn." My mouth agape, I managed to ask her if there was any way he could be contacted tonight and asked to contact us tonight since we'd been trying to talk to him all day... and haven't talked to him for days. Shaking her head, she couldn't promise us anything and said she couldn't get him by now since he was on his way to Synagogue.
At this point I'm going to cry, rage and eat someone's face. As Mr. Gerard Butler's character says in Law Abiding Citizen, "...this is going to be Biblical." A mother's rage is like no other.
Miles was able to maintain a sense of dignified character and pushed the nurse more for information. He made the room uncomfortable to anyone passing by, let me tell you! She'd told us Dr. Benn would be in around 9-10 AM and he informed her that we were previously informed that he'd be in at 5:00 today at the earliest and somehow, he's magically gone by 5:20! Of course she had no idea what to say. I thoroughly enjoyed watching the nurses run around like chickens with their heads cut off as Miles held our baby girl and I held her feeding plunge.
As Miles and I sat there with our baby, attempting to get her to suckle on her pacifier while the food filled her tummy, we began bleeding anger. Miles was in the middle of a horrifically angry sentence about Dr. Benn when, lo' and behold! The doctor appears magically! Coat on, hat in hand, he rushes in and straight to Bella. Wow... what a surprise.
After her lab tests and x-ray, it looks like we'll be sending Bella to Omaha for her heart surgery a lot sooner than anticipated/desired. The ideal is to send them in at 2 months of age, at the earliest, but she is showing signs of congestive heart failure right now. He's doubling her dosage of Lacix (this slows down the process of congestive heart failure) and if, by the end of the weekend, she doesn't seem to be responding to the doubled dose... he will call in Dr. Spangler, her pediatric cardiologist, and assess what to do and when to possibly send her to her surgery.
We may be going to Nebraska as early as Monday or Tuesday. Or, we may be spending Christmas there.
Regardless of, it's been eventful. Please continue to pray for Bella, her care, and her ability to survive.