Good evening, and thanks again for reading.
Tonight's update is a bit overdue, and for that, I apologize. However, the past few weeks have been extremely hectic.
Our son was due to arrive this past Sunday, the 19th, and as you may have read, he chose to grace the world with his arrival 3 weeks early.
Grayson is now home, and in our arms. After a very long stay in the local NICU for respiratory distress, he's where he belongs. It has officially been his first week home, and it's been joyous, stressful, and hectic, all at the same time. He's healthy, putting weight on like a champ, and doing everything a newborn is supposed to do.
It was decided by the doctors who treated him, that he was well enough to come home, but that he needed to come home on oxygen assistance, which has made life that much more challenging. We have to do the obvious things that every newborn needs done. However, we have to do it all while carting around an obscenely sized oxygen tank, and should we choose to take him out of the house, we have to cart around a backpack with a smaller, but equally frustrating oxygen tank along with all of the other baby necessities. Is it impossible? Absolutely not, but it certainly forces you to do things in a much different fashion, and at a much slower pace. I feel that both Mrs. J and I have learned much over the past several weeks, many things that I hope that no new parents should ever have to learn for themselves.
I learned, faster than what I believe anyone is prepared to learn, just how willing to fight you are when it comes to your child. Especially when it comes to the care they receive. We had the fortune of having our son treated at the best hospital in our state, but it was far from a perfect hospital. The NICU he was admitted to is rated as a top 10% NICU in the country (or so I am told), and is said to employ some of the brightest doctors in pediatric trauma and intensive care around. But, that doesn't make them perfect. On numerous occasions, I was placed head to head with doctors, nurse staff, and hospital administration, for a myriad of reasons ranging from over-zealous security practices, failure to communicate with Mrs. J and I, and even little things like ignoring his monitors when they alarmed, or personal space.
Without getting too in depth, I'm sure you've got questions, so I'll elaborate on a situation or two that we were faced with:
Situation one:
This hospital takes security to an absolute extreme. Now, me being the person that I am, can normally appreciate a "maximum security" approach. However, it was so extreme, that it bordered on silly. Perhaps it's common practice in a NICU, but my son's grandparents were not allowed to visit him in our absence, or without one of us present at all times. Even when we offered to sign a waiver allowing them access to our son in our absence, especially given that we were commuting 45 minutes a day, each way, to visit him. This led to grandparents from both sides driving that same 45 minute commute, and being able to only visit with him for about 30 minutes each day. When I brought this matter to hospital administration, there was zero grounds for flexibility - we were told that it was for "our security," and that there was absolutely zero tolerance for bending this rule.
I get it. I really do. The last thing the hospital wants is for some jackwad to run in and start snatching up babies. However, the NICU resides behind two sets of access controlled doors, one of which can only be opened to the parents by dialing to our local Department of Public Safety, having them verify you're "on the list," and opening the door remotely (which, the geek in me thinks is unbelievably rad). The second set of doors can then, only be opened, by phoning the nurse's station inside the NICU, and again being verified as on the list, and being let in. Once you make it through the gauntlet of security, you then have to verify your identity via a special wristband you're given upon your child's admission. No wristband? You don't get to see your child. No exceptions. It felt almost like we were trying to get into a super exclusive night club, what with all the list-checking, and the wristband Nazis.
So, given the Pentagon style security that resides at this hospital, I found it ludicrous that I was unable to authorize my own parents to visit their grandchild without me present.
Situation two:
Now, I want to preface this scenario with this - the majority of the nurse staff taking care of my son were fantastic. They were sympathetic, informative, and respectful of us as parents. However, on a few occasions when we visited, there were less than stellar nurses caring for him. On one specific visit, we watched his nurse bustle about the wing, completely ignoring his monitor, that had been alarming for over ten minutes (just since we had arrived, possibly longer). Once I was frustrated enough, I tracked her down, only to have her roll her eyes when asked to inspect and silence his monitor. My wife, being the amazingly polite and caring woman that she is, even apologized for bothering the nurse. This sent my frustration levels through the roof for two reasons.
A) She shouldn't be apologizing for the nurse not doing her job.
B) The nurse having the audacity to tell her, "It's okay, he's just being paranoid."
So, as you can imagine, I promptly involved the charge nurse, and had him assigned to a different caregiver.
I do acknowledge the fact that, yes, as first time parents, this whole ordeal was a situation of Jurassic Park like proportions. I also recognize that to a NICU, respiratory distress and breathing issues are business as usual, and in the grand scheme of things, not that big of a deal. However, the nonchalance of many caregivers they employ, was downright astonishing to me.
This brings me to my next point: communication.
In my line of work, communication is absolutely critical. Poor communication can be disastrous in what I do, so I would expect communication to be a top priority to a neonatal intensive care unit. But it was the furthest thing from it. This very issue led me to multiple strongly worded conversations with doctors, and even more stern conversations with hospital administrators. That was until he was assigned the most amazing nurse in all of nursedom. Yes, nursedom. That's a thing, you might want to write it down. We'll call this nurse "Slinky."
Slinky was fantastic. She took the time to meet with Mrs. J and I one-on-one, address our concerns, and treat us like humans. She also made it her mission to call us each and every time there was update-worthy news. Slinky radiated as someone who loves their job. On more than one occasion, she'd challenge a doctor's orders, and on more than one occasion, she was pulled into a private office, and reamed for doing so. But Slinky didn't care. Slinky cared about our son, and was bound and determined to get him home as soon as medically possible. And she did it. I firmly believe, that without nurse Slinky watching out for our little man, that he'd probably still be in the hospital. Nurse Slinky even went as far as coming in on her day off, saying to hell with the hospital's overtime rules, and overseeing his discharge so that we'd have minimal dealings with the two doctors we had gone head-to-head with over the course of his stay. Nurse Slinky deserves a damn medal.
I don't want this post to come across as simply derogatory in regards to the hospital, because there were plenty of good things about it. But, the negative things about this extremely emotional experience just resonate so loudly with me, that I feel it necessary to bitch about them on the internet.
What was also perplexing to me, about this hospital, is that you were unable to have a face-to-face meeting with the doctor, one-on-one. To meet with a doctor regarding our son's care, it required not only the doctor, but an army of no less than four nurses, and a hospital "social worker." While I'm sure these measures were to prevent finger-pointing and exaggerated complaints, they were extremely intimidating. Half the time the doctors refused to answer questions themselves, and simply deflected them to their army of scrubs. While we only had a few of these meetings (usually following rude and intolerable behavior from the doctor to prompt them), they were extremely difficult to conduct in a productive manner. After one of these meetings, we were also informed that the doctor performing 90% of our son's care was almost brand new to the field, and straight from the charge nurse's mouth, "overreacts to most ailments, and tends to take extreme post-discharge measures."
Mind you, this is all simply from my perspective. There's a very high probability that during his hospital stay, that I did, in fact, react extremely to much of the news we received. There's also a high likelihood that I didn't give some of our son's caregivers a fighting chance. But, who knows for sure?
All I will tell you, is that I would never wish an experience like ours on my worst enemy. It was emotionally, physically, and mentally exhausting. I'm nothing short of thrilled that our boy is home now, and in our arms, and in our care. But the ride to get this far has been bumpy.
I will keep you all updated as things change, and I've got a few more posts planned out. But, I've droned on for so long, I'd be surprised if you're still reading.
Until next time, I bid you adieu!
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