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!
Tuesday, May 21, 2013
Wednesday, May 8, 2013
An Unexpected Arrival
Good evening, everyone.
This update is going to be rather large, so please be patient - a lot has gone on over the past week and a half.
First, and most important, is that on 27 April, 2013 at 21:52, our son, Grayson was born. He was born three weeks, two hours, and eight minutes early.
Here is our story:
Early in the morning on 26 April, around 03:00, Mrs. J awoke with very sharp nausea and back pain, which resulted in her spending most of the morning throwing up. At some point, during trips to the restroom, she contacted the local hospital, as no doctor's offices were available (obviously!). They advised her that she may be in labor, and that she needed to make sure her bags were packed, as they suspected she'd be in shortly.
Fast forward to about 08:00, I woke up, and she very simply stated to me: I think I'm in labor. So, I had her schedule an appointment as soon as the office opened, and we went. After waiting over an hour past her appointment, the doctor called her back, and hooked her up to a fetal NST (non-stress test), to measure the baby's heartbeat, and to see if she was having any contractions; which it turns out she was.
After some time on the NST machine, we were sent down the street to the Labor and Delivery ward, where Mrs. J was admitted for observation. Through the course of her blood draws, it was discovered that she had a severe case of philo nephritis, and her kidneys were swollen, which caused her to start having contractions. At this point, she was 3cm dilated, and 80% effaced as of 15:30 on the 26th. However, the doctor was not convinced she was in labor, as the contractions were sporadic, and not patterned. So, Mrs. J was to be kept overnight for a 24 hour collection of urine for sampling, and to continue monitoring the contractions, as well as administration of antibiotics to treat her infection and kidney swelling.
The nurse staff came back in around 19:00, to recheck her cervix, which was still 3cm dilated, but she was 90% effaced. She disappeared for around 30 minutes, only to return with the statement, "The doctor definitely thinks you're in labor." At this point, I simply sighed, as my Google-fu and research while waiting, had led me to this conclusion about four hours earlier (granted, I'm not a doctor, but I'm also not an idiot).
At around 20:15, the doctor came in to tell us that she wouldn't be stopping the labor, but wouldn't be aiding it along, and to just wait it out, as she still wasn't 100% convinced this would turn into true labor, and thought it would stop as soon as the antibiotics kicked in. Boy, was she wrong.
At around 22:00, the doctor returned to check Mrs. J's cervix again, which was now 4cm dilated, and about 95% effaced. At this time, the contractions had come closer together, and it didn't appear that labor would be stopping. An epidural was ordered, and we were told to settle in for the long haul - it looked like our boy was coming early.
I slept very little that night, I believe only around 2 hours, if that, even. Mrs. J slept very soundly thanks to her epidural, and boy, was she going to need it.
Throughout the night, nurses were coming back to check the progression of labor, up until about 09:00, where she hit 5cm. It was at this time the doctor gave us a set of choices:
-Break her water, and let labor accelerate with medical assistance.
-Leave the epidural in, but let the labor process continue naturally.
-Take the epidural out, go home, and wait it out there.
It didn't take much discussion for us to make a decision - we were given excellent odds by the doctor, since the baby was almost 37 weeks; she presented a 2% chance that the baby would have any issues, and a 98% chance that everything would be perfect, and he'd go home with us. We gambled the odds, with them being presented so favorably, and had the doctor break Mrs. J's water. Shortly after the water was broken, a drip of Oxytocin was administered to assist in dilation.
Although, in retrospect, the Oxytocin didn't do much to help, as she endured almost an entire second day of contractions and labor.
At about 21:10, Mrs. J began to feel the need to push, and the nurses came in to start the show. I will spare the gory details, but 42 minutes after pushing began, our little angel graced our world with his presence. He was born a very healthy 7.2lbs, and 19" long. Shortly after he was out safely, and his cord cut, we were informed by the doctor that though she originally cancelled the order for urinalysis, she opted to have the collected samples tested anyway. Mrs. J tested very positive for pre-eclampsia, as she had a strong protein presence in her urine. Based on this data, the doctor stated she would've scheduled an induction for early the following week, to ensure the health and safety of the baby. I'd heard of pre-eclampsia/toxemia before, but never looked into how dangerous it is to unborn babies.
Mrs. J was allowed to have our son skin-to-skin, for only seven hours. During this seven hours, she was unable to get him to breastfeed successfully. It wasn't until the latter half of those hours, that the nurse staff, who previously determined he was 100% healthy, decided to recheck his oxygen levels. Lo-and-behold, they were extremely low, and his respiration was extremely fast, explaining why he wouldn't eat. He was whisked away to the nursery ward, and inspected by a pediatrician. It was the pediatrician's determination that he needed to be transferred to a hospital 30 minutes away, and placed in the care of their neonatal intensive care staff.
We were already stressed at this point, from the past two days' events. You can only imagine what we felt when we discovered our son had to have special attention, from a crew in another city, because this hospital was unable to determine exactly what was wrong with him.
I broke down. She broke down. We both, for lack of a better phrase, lost our shit. I pride myself on how stone-faced and difficult to read I am. That day, however, I was an open book. I can't remember another time in my life where I've cried so much. Even when I was in the hospital myself, not long ago, I never once cried, even in the face of my own expiration. I came to terms so easily with what happened to me... But my son, that's a different story. So helpless, and unknowing. But, I composed myself, and we drove on.
Fast forward to today. Our son has been in the NICU for almost 11 days, and his progress has been amazing. Unfortunately, the doctors, if they know what's exactly wrong with him, haven't told us. All they've told us was that he was received in respiratory distress, but that they don't know what's perpetuated the issues he's had - be it immature lungs, underdeveloped lungs, or an infection. For the first 7 days he was in the NICU, he was on high-flow oxygen with inhalants to help his lungs work, and mature. His first day in, he was given Curosurf, which is a synthetic surfactant, administered to infants with immature lungs, that helps increase their natural production of surfactants, which allow their lungs to expand and contract without sticking. After those 7 days, he was taken completely off of oxygen, and we were told that he was doing great, all that they were waiting on was the completion of his antibiotic.
Grayson was being treated proactively for infection, as the doctors caring for him had a suspicion that Mom's kidney infection may have caused pneumonia in our son, but were unable to confirm this. Grayson's chest x-rays have shown fluid, but not enough to conclusively prove pneumonia vs. amniotic or pre-birth fluid. His CBC labs were only slightly elevated, so they were ruled inconclusive.
Over the past 10 or 11 days, his food intake has increased exponentially every day, and his breathing has remained stable. All things positive. We were told yesterday that he was being prepped for discharge, and we were asked to stay at the hospital this evening to "room-in" with him, to prepare for his departure. That is, until about 20:00, where they administered their "car seat challenge," post-feeding. During this "challenge," Grayson's oxygen levels began to desaturate once again, and he began respirating very quickly again.
So, our elation was shattered, as he will not be coming home tomorrow, or the next day, or even this weekend. He was placed on oxygen once again, albeit a very low dosage, through a low-flow canula, to stabilize his breathing. The offer was made, that he can come home on low-flow oxygen, but to Mrs. J and I, this was an unacceptable determination. Grayson has been in their care for almost two weeks, and we will not allow him to be sent home at sub-100% health.
Unfortunately, with the uncertainty behind what is actually causing his respiratory distress, we resort to the waiting game once again. His doctor this evening suspects that if he did, in fact, have pneumonia, the inflammation in his lungs may not be gone, thus causing him to breathe abnormally.
I can say this, for sure, that the amount of unknowns in his care have been extremely troublesome. I know that with as many factors surrounding his birth, there are a lot of variables. However, with the cost involved in his care to this point, and the 24/7 attention, some part of me thinks that there has to be some way for them to determine exactly what is causing the issues with his breathing.
This last week has been the most trying time in either of our lives. However, together, we've been able to stay strong. I will also say, I believe, that if nothing else, this whole ordeal has helped to make us better parents, and to bring us closer together as a couple.
Please keep our family in your prayers, or thoughts, or whatever your beliefs lead you to do.
Thanks for reading, and we'll keep you updated.
This update is going to be rather large, so please be patient - a lot has gone on over the past week and a half.
First, and most important, is that on 27 April, 2013 at 21:52, our son, Grayson was born. He was born three weeks, two hours, and eight minutes early.
Here is our story:
Early in the morning on 26 April, around 03:00, Mrs. J awoke with very sharp nausea and back pain, which resulted in her spending most of the morning throwing up. At some point, during trips to the restroom, she contacted the local hospital, as no doctor's offices were available (obviously!). They advised her that she may be in labor, and that she needed to make sure her bags were packed, as they suspected she'd be in shortly.
Fast forward to about 08:00, I woke up, and she very simply stated to me: I think I'm in labor. So, I had her schedule an appointment as soon as the office opened, and we went. After waiting over an hour past her appointment, the doctor called her back, and hooked her up to a fetal NST (non-stress test), to measure the baby's heartbeat, and to see if she was having any contractions; which it turns out she was.
After some time on the NST machine, we were sent down the street to the Labor and Delivery ward, where Mrs. J was admitted for observation. Through the course of her blood draws, it was discovered that she had a severe case of philo nephritis, and her kidneys were swollen, which caused her to start having contractions. At this point, she was 3cm dilated, and 80% effaced as of 15:30 on the 26th. However, the doctor was not convinced she was in labor, as the contractions were sporadic, and not patterned. So, Mrs. J was to be kept overnight for a 24 hour collection of urine for sampling, and to continue monitoring the contractions, as well as administration of antibiotics to treat her infection and kidney swelling.
The nurse staff came back in around 19:00, to recheck her cervix, which was still 3cm dilated, but she was 90% effaced. She disappeared for around 30 minutes, only to return with the statement, "The doctor definitely thinks you're in labor." At this point, I simply sighed, as my Google-fu and research while waiting, had led me to this conclusion about four hours earlier (granted, I'm not a doctor, but I'm also not an idiot).
At around 20:15, the doctor came in to tell us that she wouldn't be stopping the labor, but wouldn't be aiding it along, and to just wait it out, as she still wasn't 100% convinced this would turn into true labor, and thought it would stop as soon as the antibiotics kicked in. Boy, was she wrong.
At around 22:00, the doctor returned to check Mrs. J's cervix again, which was now 4cm dilated, and about 95% effaced. At this time, the contractions had come closer together, and it didn't appear that labor would be stopping. An epidural was ordered, and we were told to settle in for the long haul - it looked like our boy was coming early.
I slept very little that night, I believe only around 2 hours, if that, even. Mrs. J slept very soundly thanks to her epidural, and boy, was she going to need it.
Throughout the night, nurses were coming back to check the progression of labor, up until about 09:00, where she hit 5cm. It was at this time the doctor gave us a set of choices:
-Break her water, and let labor accelerate with medical assistance.
-Leave the epidural in, but let the labor process continue naturally.
-Take the epidural out, go home, and wait it out there.
It didn't take much discussion for us to make a decision - we were given excellent odds by the doctor, since the baby was almost 37 weeks; she presented a 2% chance that the baby would have any issues, and a 98% chance that everything would be perfect, and he'd go home with us. We gambled the odds, with them being presented so favorably, and had the doctor break Mrs. J's water. Shortly after the water was broken, a drip of Oxytocin was administered to assist in dilation.
Although, in retrospect, the Oxytocin didn't do much to help, as she endured almost an entire second day of contractions and labor.
At about 21:10, Mrs. J began to feel the need to push, and the nurses came in to start the show. I will spare the gory details, but 42 minutes after pushing began, our little angel graced our world with his presence. He was born a very healthy 7.2lbs, and 19" long. Shortly after he was out safely, and his cord cut, we were informed by the doctor that though she originally cancelled the order for urinalysis, she opted to have the collected samples tested anyway. Mrs. J tested very positive for pre-eclampsia, as she had a strong protein presence in her urine. Based on this data, the doctor stated she would've scheduled an induction for early the following week, to ensure the health and safety of the baby. I'd heard of pre-eclampsia/toxemia before, but never looked into how dangerous it is to unborn babies.
Mrs. J was allowed to have our son skin-to-skin, for only seven hours. During this seven hours, she was unable to get him to breastfeed successfully. It wasn't until the latter half of those hours, that the nurse staff, who previously determined he was 100% healthy, decided to recheck his oxygen levels. Lo-and-behold, they were extremely low, and his respiration was extremely fast, explaining why he wouldn't eat. He was whisked away to the nursery ward, and inspected by a pediatrician. It was the pediatrician's determination that he needed to be transferred to a hospital 30 minutes away, and placed in the care of their neonatal intensive care staff.
We were already stressed at this point, from the past two days' events. You can only imagine what we felt when we discovered our son had to have special attention, from a crew in another city, because this hospital was unable to determine exactly what was wrong with him.
I broke down. She broke down. We both, for lack of a better phrase, lost our shit. I pride myself on how stone-faced and difficult to read I am. That day, however, I was an open book. I can't remember another time in my life where I've cried so much. Even when I was in the hospital myself, not long ago, I never once cried, even in the face of my own expiration. I came to terms so easily with what happened to me... But my son, that's a different story. So helpless, and unknowing. But, I composed myself, and we drove on.
Fast forward to today. Our son has been in the NICU for almost 11 days, and his progress has been amazing. Unfortunately, the doctors, if they know what's exactly wrong with him, haven't told us. All they've told us was that he was received in respiratory distress, but that they don't know what's perpetuated the issues he's had - be it immature lungs, underdeveloped lungs, or an infection. For the first 7 days he was in the NICU, he was on high-flow oxygen with inhalants to help his lungs work, and mature. His first day in, he was given Curosurf, which is a synthetic surfactant, administered to infants with immature lungs, that helps increase their natural production of surfactants, which allow their lungs to expand and contract without sticking. After those 7 days, he was taken completely off of oxygen, and we were told that he was doing great, all that they were waiting on was the completion of his antibiotic.
Grayson was being treated proactively for infection, as the doctors caring for him had a suspicion that Mom's kidney infection may have caused pneumonia in our son, but were unable to confirm this. Grayson's chest x-rays have shown fluid, but not enough to conclusively prove pneumonia vs. amniotic or pre-birth fluid. His CBC labs were only slightly elevated, so they were ruled inconclusive.
Over the past 10 or 11 days, his food intake has increased exponentially every day, and his breathing has remained stable. All things positive. We were told yesterday that he was being prepped for discharge, and we were asked to stay at the hospital this evening to "room-in" with him, to prepare for his departure. That is, until about 20:00, where they administered their "car seat challenge," post-feeding. During this "challenge," Grayson's oxygen levels began to desaturate once again, and he began respirating very quickly again.
So, our elation was shattered, as he will not be coming home tomorrow, or the next day, or even this weekend. He was placed on oxygen once again, albeit a very low dosage, through a low-flow canula, to stabilize his breathing. The offer was made, that he can come home on low-flow oxygen, but to Mrs. J and I, this was an unacceptable determination. Grayson has been in their care for almost two weeks, and we will not allow him to be sent home at sub-100% health.
Unfortunately, with the uncertainty behind what is actually causing his respiratory distress, we resort to the waiting game once again. His doctor this evening suspects that if he did, in fact, have pneumonia, the inflammation in his lungs may not be gone, thus causing him to breathe abnormally.
I can say this, for sure, that the amount of unknowns in his care have been extremely troublesome. I know that with as many factors surrounding his birth, there are a lot of variables. However, with the cost involved in his care to this point, and the 24/7 attention, some part of me thinks that there has to be some way for them to determine exactly what is causing the issues with his breathing.
This last week has been the most trying time in either of our lives. However, together, we've been able to stay strong. I will also say, I believe, that if nothing else, this whole ordeal has helped to make us better parents, and to bring us closer together as a couple.
Please keep our family in your prayers, or thoughts, or whatever your beliefs lead you to do.
Thanks for reading, and we'll keep you updated.
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