Everett in his bassinet.
The Mother/Baby department must have been full, because we were moved into Pediatrics in a shared room. No one else was in the room, but we were concerned that someone else would be put there and we had taken privacy during our stay for granted. We really didn't want to have to make nice with roommates during this emotional time. The nurses and pediatricians started to come by to do checks on both Elizabeth and Everett. The first pediatrician noted that Everett was grunting some and thought it was likely due to fluid still in his lungs that needed to get "worked out." He said that residual fluid is a fairly common part of newborns transitioning, and while he didn't seem too concerned, wanted to keep an eye on it. He also noticed that Everett was breathing a bit quickly, something the doctor also wanted to keep a close eye on. Everett's heart, lungs, and bowels all sounded good, and the pediatrician noted that Everett was a strong guy with all of the newborn reflexes working the way they should. The doctor made certain we understood that all of Everett's neurological reflexes seemed normal, and confirmed that the ultrasound of his brain was ordered and would happen within a day or so. He definitely tried his best to assure us that they were going to keep very close watch on him, but that everything looked normal for a baby only a few hours old.
The pediatrician asked the nurses to do a quick work-up on Everett to check his temp and O2 saturation. Chris went with Everett just down the hall to another station while the nurses checked him out. His temp was a little low, but in the normal range, and while his O2 saturation wasn't perfect (at or above 95%), it was hovering in the 93-94 range. When he warmed up, it got more steady around 95%, so neither the nurses nor the pediatrician were concerned at this point, but it didn't feel quite right to Chris. The plan was to watch him closely to ensure it wasn't something other than the residual fluid from transitioning (we must have heard that word 100 times).
After getting settled and more comfortable, we decided that we would be OK if Everett's grandparents (Elizabeth's parents) came in to meet Everett (and bring some coffee and snacks for Chris). It was special for us to all be in the same room when this happened, free of the monitors, wires, tubes, and visitor limits we had with Obie in the NICU. After a bit of time, our nurse shared that she was working with her manager to get us a private room back in the actual Mother/Baby department. We did not object, and right around shift change they whisked us back down the hall to a better room. Elizabeth got the feeling it was partly so that they could keep a better eye on Everett, his O2 levels, and the grunting.
Our next nurse was obviously prepped about our history (we found that almost everyone we interacted with knew about Everett's older brother), and she was extremely considerate and accommodating...almost to the point of annoying Chris by asking if there was "anything" she could do for us every five minutes. When she did her first checks on Everett, she was having a devil of a time with her equipment. Two different thermometers didn't work (Evie hadn't had a bath yet, which can cause issues, apparently). When she did finally get readings, she found his temp was still a little low and she was also getting sub-optimal O2 readings. She assured us that it was the equipment and not a problem, but the tone of the room had become worried, and we were not at all comfortable with her assurances. She moved Evie across the hall (literally across the hall) to the nursery to warm him up and re-check his O2 on a better machine. After exhausting what seemed like a half dozen O2 sensors to find one she was comfortable with, Evie's O2 reading did read out right around 95%. The nurse gave an update to the attending pediatrician, apologized for creating a bit of a worried atmosphere, and shared that she really wanted to be cautious and be sure he was OK.
Shortly after all this hubbub, the technician came to do the ultrasound of Everett's brain. We all went back to the nursery and held our breath. The scan didn't take long, and the pediatrician reviewed the results quickly - everything looked normal with no signs of atrophy! We were so relieved, and so glad we'd asked for this easy check to help us differentiate between Oberon's journey and Everett's.
We were able to spend the rest of Evie's birthday with him in our room, taking care of him, cuddling him, changing him, and trying to feed him more. He wasn't too interested in the feedings, which worried some nurses, but others (including lactation consultants) said it was completely normal on day one. Grandma and Grandpa also got some more visit time and got to hold Evie for the first time. They also took our first family photos, which we will always cherish.
Chris and Elizabeth had a talk about how different everything was. Being able to hold and handle Evie from the beginning, sporadic nursing checks instead of constant watching, visitors allowed whenever, a much quieter (and darker) environment, and being able to take care of our son pretty much on our own was all new for us. It was so strange to think that this is how most people experience the birth of all their children. It was so much calmer and simpler.
That's not to say everything was perfect. We were still working through some complicated emotions - wishing this had been our experience with Oberon too, missing him, and Elizabeth was having a hard time believing Everett was really hers. Chris assured her that he was (he saw it happen!), but there was still this weird feeling. It happened with Oberon too, but it seemed like something that should have been different this time around, and wasn't.
Into the evening and nighttime hours, it seemed like things were going well (well enough, anyway), and they were hoping to discharge everybody the next day. We were even comfortable enough to let them take Everett to the nursery for a time overnight while we caught up on a bit of sleep. Chris and Elizabeth were pretty sure they wouldn't be able to sleep without a babysitter watching Everett, so they took advantage of the nursery. He also got his first bath, and his awesome mohawk, from the nursery nurse overnight.
In the morning, everything seemed to be moving towards being discharged around noon, but there were still a number of items on Everett's checklist before they would let us go home. Chris went with Everett and our nurse back to the nursery for his 24 hour weight and O2 checks. While his O2 wasn't in a dangerous range, it didn't pass the required 95% and our nurse quickly called the pediatrician in again. Based on Evie's continued quick breathing and low O2, the pediatrician ordered a chest x-ray, which they did right away in the nursery. The x-ray confirmed some fluid in his lungs and a portion of his lungs that were not fully expanded. This is when the neonatologist (NICU doctor) was first called in to consult.
The pediatrician and the neonatologist discussed Everett's situation and then came to talk to us. They were recommending an echocardiogram to rule out heart issues that could cause the rapid breathing, but they seemed pretty sure they wouldn't find anything there. Back to the nursery, where the echocardiogram was performed by a technician. It was a full scan and it took a while. Near the end of the scan, the pediatric cardiologist came in to do some additional scans and measurements. We've both seen enough echocardiograms to know when there's some sort of backflow, but not enough to know what is considered OK for a newborn and what isn't. We were both terrified they had found something abnormal and were looking closer to find out how bad it was. Turns out while Evie's heart did have some flow in the wrong direction, it's totally normal for one-day-olds. He has a patent foramen ovale, a hole between the left and right atria. This is extremely common and most often causes no symptoms. Every fetus has this hole so that blood can bypass the lungs (which don't work until the newborn is exposed to and breathing air). When the baby is born, the hole closes, most of the time. For those that don't immediately close, the hole will still most likely close on its own sometime over the next year. The pediatric cardiologist even told us that the flaps in Everett's heart look exactly like ones that would close. If the flaps were too far apart, they could see that the hole wouldn't close naturally. It also turns out that this could not be causing his moderate O2 levels, and wasn't predicted to cause any other symptoms (was not causing the rapid breathing).
After this, the neonatologist and pediatrician came to talk to us again. They still thought Everett's symptoms were probably caused by transitioning, and probably would get better on their own in a day or so. But he wouldn't be released until they were resolved.
Chris pressed them on what else could be causing the issues besides transitioning, and that's the first time infection was brought up as a potential cause. At first, they seemed to want to wait until the next day to see if Everett's breathing and O2 numbers got better on their own, but we asked if there was anything we could do sooner than that. The doctors decided it was worthwhile to run some blood tests right away to see if there was any indication of an infection. A team of NICU nurses came in to the nursery to draw blood for the tests. Poor little bug getting poked. The doctors told us they were looking for signs of infection, which could explain the fluid in the lungs and fast breathing (tachypnea).
Everett's blood test results came back in waves. First were his blood gases, which were tested right away on an i-STAT (shout out to Abbott devices, company pride!). They were normal, which meant his respiration was working correctly. The next results to come back were for a marker protein that is good at confirming or ruling out an infection, but also has a gray area where the results don't tell you much. Evie's results were in the gray area. The neonatologist (Dr. P., who we remembered from Oberon's NICU stay) talked to us about whether he should be admitted to the NICU and what would happen there. We felt like we'd been run over by a truck. We wanted Everett to have the care he needed, but it felt really wrong to send him to the NICU. This was supposed to be different, and heading back to the NICU felt like going down an old road with a very bad ending. Needless to say, we weren't getting discharged.
We ended up agreeing for Everett to be admitted to the NICU to start antibiotics while we waited for the rest of the test results to come back. We both walked over with him from Mother/Baby to the NICU and stayed there while the nurses got him hooked up to all-too-familiar monitors making all-too-familiar noises. His first nurse was a nurse Obie had too, Nurse P. We really like Nurse P, but we weren't excited about seeing her again under these circumstances! Even so, it was good to have a familiar face right off the bat, especially since she knew Oberon's (and our) story so well. Everett was given an IV so he could get fluids and antibiotics. That was pretty emotional for us, especially since they had to stick both arms as the first one didn't work right.
Going back to Elizabeth's room during shift change (and to get some food) was horrible. Lots of crying from Elizabeth and lots of traumatic memories coming back. With Oberon, we were emotionally ready for the NICU on those first few days. With Everett, we really weren't. In retrospect, maybe we should've taken more seriously the chance that we'd wind up NICU parents again, but there weren't any signs during the pregnancy or delivery that this would happen so perhaps not.
When the night shift of doctors came on in the NICU, we saw more familiar faces. We're fairly confident Obie's doctors remembered him (and us), and they were very sensitive. One even went so far as to say to us that this wasn't the same. We appreciated the sentiment (and trust that she felt it was true), but it was hard to accept when there was still so much uncertainty. We'd heard words like sepsis and pneumonia floating around, scary words.
Since the day was so crazy, Elizabeth wasn't discharged either. That was good since it gave us another night in the same hospital where Elizabeth could feed Everett overnight and not worry about pumping. We were hoping to get some clarity (though we knew not to get our hopes too high) the next morning during rounds.
By now it was Saturday, and Everett had just hit two days old. They were pushing Elizabeth to be discharged, so we knew we would be going home without Everett. That realization was another wave of horrible memories. Here we were again leaving the hospital without a baby in the car seat. Going home, while our child stayed behind.
Saturday did give us some more clarity on the plan for Everett's care. He would be getting blood tests every day for the marker protein and some blood cell counts. He was continuing to get antibiotics as a precautionary measure for a "presumed infection." He was on the monitors, but he wasn't getting any additional treatment (no respirator and no oxygen). We were told the usual course of antibiotics is five days, but if Everett had awesome blood work they might discontinue it early so he could go home. We tried not to get our hopes too high.
After Elizabeth was discharged, we raced home for a quick shower and meal before heading right back to the NICU for Everett's next feeding. We spent most of the evening with Everett in the NICU, and after one final feeding, headed home by ourselves for the night. Elizabeth woke up every three hours during the night to pump so that Evie would need as little formula as possible while in the NICU.
Back in the NICU for rounds on Sunday morning, the team of doctors were happy that his blood testing results appeared to be going in the right direction, and although it was still premature to make any decisions, they started talking about a Monday discharge if his levels all looked good the next morning. One additional concern was that his bilirubin (jaundice) had gone up to a moderate risk category, though no treatment was warranted yet. Some additional good news was that the NICU was able to offer us one of the parent rooms, which allowed us to "room in" and spend the night at the hospital inside the NICU with Everett. Because he was doing well, they allowed us to bring Everett into the parent room so we could stay with him during most of the night. It also meant that Elizabeth could feed him and that no additional formula feeding was needed. We had also roomed-in (in the same room) the night before Oberon was discharged, which again brought up a storm of complex emotions. Oberon wasn't able to be with us in the parent room, but we remembered things like the super high bed with too-small sheets.
There were a few weird things that went on during that night. Everett's day nurse was new to us, and while she seemed to take good care of Evie, she also seemed a bit scattered and it felt to us that she had her own way of doing things (didn't seem to know the "unwritten rules" and wasn't really confident about what we needed to do before going home). There didn't seem to be anything wrong, it just felt disjointed. While the day nurse did checks on Everett in the parent room, the night nurse wanted to take him back to the NICU to do checks and was a bit pushy about it (with the day nurse and with us, which was a bit startling). Chris accompanied Everett back to the NICU for checks, while Elizabeth got a quick rest before the next feeding.
After that shift change, we ran into the only truly negative experience we had had with any of the staff while we were in the NICU. There had been some miscommunication regarding the need for a car seat check (1.5 hours in the seat after eating to ensure there are no issues with breathing). This apparently is always required for preemies and/or for babies with "respiratory distress." While Evie had been admitted for breathing concerns, his doctors believed it was unnecessary to do this check and hadn't required it. He was never treated directly with oxygen or a respirator - he breathed on his own the whole time and was a full term baby. It appeared that there was a good deal of confusion among the nurses (it's never settling to hear nurses arguing with each other), and on top of that Evie's new nurse was acting like the previous nurse didn't know what she was doing. Chris was visibly confused and irritated (it was also after midnight, so sleep deprivation certainly didn't help). One of the other nurses in Everett's pod took it upon herself to explain what was going on to Chris in the most condescending way imaginable, and in the process managed to say something incredibly hurtful (to any parent, but especially a loss parent). As she tried to explain and justify doing something the doctors didn't believe was necessary (the car seat check), she explained that she was trying to prevent us from laughing and joking around in the front seat while our child spit up and choked to death in the back on the way home. Chris was blown away by the insensitivity and hurtfulness of the nurse. With obvious outrage and disgust, he called the nurse out with a number of choice words. We honestly didn't care one way or the other about the car seat test, but were completely floored by the nurse's comments, especially since she claimed to know about our previous loss. Although we had far more important things to worry about, it was hurtful and we were extremely appreciative of one of the NICU doctors (Dr. A, who we also knew from Oberon's NICU stay) who made it a point to come to us and apologize for the situation. She also took the time to clarify exactly what needed to happen in the morning if we were to be discharged.
The doctors ordered another chest x-ray in the morning. They also did a final set of labs which confirmed all of his numbers were still going in the right direction (and in the safe areas). All of his level looked good on Monday morning, except his bili, which was still gradually rising, but not enough to required immediate treatment (they gave us the option to take a bili blanket home with us to preemptively knock that out, which we decided to do). Dr. S spent some time with us talking through all of his care and results and showed us both chest x-rays side by side (the second of which looked great). Given all of the results, she was convinced that he was doing well and could finally be discharged!
On the afternoon of Monday January the 11th, Everett was finally discharged, and we brought him home!
The next morning, we were scheduled for our appointment with the newborn care center. They rechecked his weight and bili levels, and with the bili low enough, we were able to return the bili blanket, the last remnant of hospital-grade equipment in our house.
Three days isn't a long NICU stay by any means, but it was an emotional time for us and felt like forever when it was happening. The doctors aren't 100% certain, but the top theory is that everything really was due to Everett transitioning - apparently a fast delivery doesn't allow babies enough time to fully expand their lungs and get rid of residual fluids. It doesn't seem a high likelihood that he actually had an infection, but there is no way to be sure. Maybe everyone was being extra cautious because of our history, maybe he would have received the same care without it.
Being home with Everett is certainly different than when we were home with Oberon. With Oberon, everything was so heightened. Either Chris or Elizabeth was awake with him 24/7, we had feeding schedules and medication schedules, hospice nurse visits, and awaiting the inevitable. With Everett, we are trying not to let anxiety overwhelm us. We just have to do the normal newborn care things like feed him when he's hungry, burp him when he's gassy, change him when he's dirty, and give him lots of snuggles all the time. We both sleep sometimes (although having an Owlet monitoring his heart rate and O2 saturation at night is pretty much the only reason we can do that).
We've both slipped up and called Everett "Obie" out loud and in our heads. We miss Oberon every time we look at Everett. They look alike, yet different. Sometimes Everett makes a face and it looks just like his brother. Sometimes the way he stretches in our arms takes us back to a similar moment with Obie. There's still crying. There's still a hole in our family. It's a bigger family now, but a member is still missing and that still hurts. Elizabeth still looks at Everett and isn't as bonded as she wished she was. He cries, and her milk comes in, but she doesn't have an emotional response. It's more of a practical response right now. Hopefully the head-over-heels love part is right around the corner, growing every minute.
The pediatrician asked the nurses to do a quick work-up on Everett to check his temp and O2 saturation. Chris went with Everett just down the hall to another station while the nurses checked him out. His temp was a little low, but in the normal range, and while his O2 saturation wasn't perfect (at or above 95%), it was hovering in the 93-94 range. When he warmed up, it got more steady around 95%, so neither the nurses nor the pediatrician were concerned at this point, but it didn't feel quite right to Chris. The plan was to watch him closely to ensure it wasn't something other than the residual fluid from transitioning (we must have heard that word 100 times).
After getting settled and more comfortable, we decided that we would be OK if Everett's grandparents (Elizabeth's parents) came in to meet Everett (and bring some coffee and snacks for Chris). It was special for us to all be in the same room when this happened, free of the monitors, wires, tubes, and visitor limits we had with Obie in the NICU. After a bit of time, our nurse shared that she was working with her manager to get us a private room back in the actual Mother/Baby department. We did not object, and right around shift change they whisked us back down the hall to a better room. Elizabeth got the feeling it was partly so that they could keep a better eye on Everett, his O2 levels, and the grunting.
Grandpa F. with Everett.
Grandma F. holding Everett.
Our next nurse was obviously prepped about our history (we found that almost everyone we interacted with knew about Everett's older brother), and she was extremely considerate and accommodating...almost to the point of annoying Chris by asking if there was "anything" she could do for us every five minutes. When she did her first checks on Everett, she was having a devil of a time with her equipment. Two different thermometers didn't work (Evie hadn't had a bath yet, which can cause issues, apparently). When she did finally get readings, she found his temp was still a little low and she was also getting sub-optimal O2 readings. She assured us that it was the equipment and not a problem, but the tone of the room had become worried, and we were not at all comfortable with her assurances. She moved Evie across the hall (literally across the hall) to the nursery to warm him up and re-check his O2 on a better machine. After exhausting what seemed like a half dozen O2 sensors to find one she was comfortable with, Evie's O2 reading did read out right around 95%. The nurse gave an update to the attending pediatrician, apologized for creating a bit of a worried atmosphere, and shared that she really wanted to be cautious and be sure he was OK.
Shortly after all this hubbub, the technician came to do the ultrasound of Everett's brain. We all went back to the nursery and held our breath. The scan didn't take long, and the pediatrician reviewed the results quickly - everything looked normal with no signs of atrophy! We were so relieved, and so glad we'd asked for this easy check to help us differentiate between Oberon's journey and Everett's.
We were able to spend the rest of Evie's birthday with him in our room, taking care of him, cuddling him, changing him, and trying to feed him more. He wasn't too interested in the feedings, which worried some nurses, but others (including lactation consultants) said it was completely normal on day one. Grandma and Grandpa also got some more visit time and got to hold Evie for the first time. They also took our first family photos, which we will always cherish.
Family pictures on Everett's Birthday - January 7, 2016.
Chris and Elizabeth had a talk about how different everything was. Being able to hold and handle Evie from the beginning, sporadic nursing checks instead of constant watching, visitors allowed whenever, a much quieter (and darker) environment, and being able to take care of our son pretty much on our own was all new for us. It was so strange to think that this is how most people experience the birth of all their children. It was so much calmer and simpler.
That's not to say everything was perfect. We were still working through some complicated emotions - wishing this had been our experience with Oberon too, missing him, and Elizabeth was having a hard time believing Everett was really hers. Chris assured her that he was (he saw it happen!), but there was still this weird feeling. It happened with Oberon too, but it seemed like something that should have been different this time around, and wasn't.
Into the evening and nighttime hours, it seemed like things were going well (well enough, anyway), and they were hoping to discharge everybody the next day. We were even comfortable enough to let them take Everett to the nursery for a time overnight while we caught up on a bit of sleep. Chris and Elizabeth were pretty sure they wouldn't be able to sleep without a babysitter watching Everett, so they took advantage of the nursery. He also got his first bath, and his awesome mohawk, from the nursery nurse overnight.
Skin-to-skin with Mommy, and a pretty cool mohawk!
In the morning, everything seemed to be moving towards being discharged around noon, but there were still a number of items on Everett's checklist before they would let us go home. Chris went with Everett and our nurse back to the nursery for his 24 hour weight and O2 checks. While his O2 wasn't in a dangerous range, it didn't pass the required 95% and our nurse quickly called the pediatrician in again. Based on Evie's continued quick breathing and low O2, the pediatrician ordered a chest x-ray, which they did right away in the nursery. The x-ray confirmed some fluid in his lungs and a portion of his lungs that were not fully expanded. This is when the neonatologist (NICU doctor) was first called in to consult.
The pediatrician and the neonatologist discussed Everett's situation and then came to talk to us. They were recommending an echocardiogram to rule out heart issues that could cause the rapid breathing, but they seemed pretty sure they wouldn't find anything there. Back to the nursery, where the echocardiogram was performed by a technician. It was a full scan and it took a while. Near the end of the scan, the pediatric cardiologist came in to do some additional scans and measurements. We've both seen enough echocardiograms to know when there's some sort of backflow, but not enough to know what is considered OK for a newborn and what isn't. We were both terrified they had found something abnormal and were looking closer to find out how bad it was. Turns out while Evie's heart did have some flow in the wrong direction, it's totally normal for one-day-olds. He has a patent foramen ovale, a hole between the left and right atria. This is extremely common and most often causes no symptoms. Every fetus has this hole so that blood can bypass the lungs (which don't work until the newborn is exposed to and breathing air). When the baby is born, the hole closes, most of the time. For those that don't immediately close, the hole will still most likely close on its own sometime over the next year. The pediatric cardiologist even told us that the flaps in Everett's heart look exactly like ones that would close. If the flaps were too far apart, they could see that the hole wouldn't close naturally. It also turns out that this could not be causing his moderate O2 levels, and wasn't predicted to cause any other symptoms (was not causing the rapid breathing).
Chris and Everett Cuddles - January 7, 2016
After this, the neonatologist and pediatrician came to talk to us again. They still thought Everett's symptoms were probably caused by transitioning, and probably would get better on their own in a day or so. But he wouldn't be released until they were resolved.
Chris pressed them on what else could be causing the issues besides transitioning, and that's the first time infection was brought up as a potential cause. At first, they seemed to want to wait until the next day to see if Everett's breathing and O2 numbers got better on their own, but we asked if there was anything we could do sooner than that. The doctors decided it was worthwhile to run some blood tests right away to see if there was any indication of an infection. A team of NICU nurses came in to the nursery to draw blood for the tests. Poor little bug getting poked. The doctors told us they were looking for signs of infection, which could explain the fluid in the lungs and fast breathing (tachypnea).
Everett's blood test results came back in waves. First were his blood gases, which were tested right away on an i-STAT (shout out to Abbott devices, company pride!). They were normal, which meant his respiration was working correctly. The next results to come back were for a marker protein that is good at confirming or ruling out an infection, but also has a gray area where the results don't tell you much. Evie's results were in the gray area. The neonatologist (Dr. P., who we remembered from Oberon's NICU stay) talked to us about whether he should be admitted to the NICU and what would happen there. We felt like we'd been run over by a truck. We wanted Everett to have the care he needed, but it felt really wrong to send him to the NICU. This was supposed to be different, and heading back to the NICU felt like going down an old road with a very bad ending. Needless to say, we weren't getting discharged.
We ended up agreeing for Everett to be admitted to the NICU to start antibiotics while we waited for the rest of the test results to come back. We both walked over with him from Mother/Baby to the NICU and stayed there while the nurses got him hooked up to all-too-familiar monitors making all-too-familiar noises. His first nurse was a nurse Obie had too, Nurse P. We really like Nurse P, but we weren't excited about seeing her again under these circumstances! Even so, it was good to have a familiar face right off the bat, especially since she knew Oberon's (and our) story so well. Everett was given an IV so he could get fluids and antibiotics. That was pretty emotional for us, especially since they had to stick both arms as the first one didn't work right.
Napping in the NICU.
When the night shift of doctors came on in the NICU, we saw more familiar faces. We're fairly confident Obie's doctors remembered him (and us), and they were very sensitive. One even went so far as to say to us that this wasn't the same. We appreciated the sentiment (and trust that she felt it was true), but it was hard to accept when there was still so much uncertainty. We'd heard words like sepsis and pneumonia floating around, scary words.
Since the day was so crazy, Elizabeth wasn't discharged either. That was good since it gave us another night in the same hospital where Elizabeth could feed Everett overnight and not worry about pumping. We were hoping to get some clarity (though we knew not to get our hopes too high) the next morning during rounds.
Nap time with Daddy in the NICU.
By now it was Saturday, and Everett had just hit two days old. They were pushing Elizabeth to be discharged, so we knew we would be going home without Everett. That realization was another wave of horrible memories. Here we were again leaving the hospital without a baby in the car seat. Going home, while our child stayed behind.
Saturday did give us some more clarity on the plan for Everett's care. He would be getting blood tests every day for the marker protein and some blood cell counts. He was continuing to get antibiotics as a precautionary measure for a "presumed infection." He was on the monitors, but he wasn't getting any additional treatment (no respirator and no oxygen). We were told the usual course of antibiotics is five days, but if Everett had awesome blood work they might discontinue it early so he could go home. We tried not to get our hopes too high.
After Elizabeth was discharged, we raced home for a quick shower and meal before heading right back to the NICU for Everett's next feeding. We spent most of the evening with Everett in the NICU, and after one final feeding, headed home by ourselves for the night. Elizabeth woke up every three hours during the night to pump so that Evie would need as little formula as possible while in the NICU.
Mommy and Everett in the NICU.
Back in the NICU for rounds on Sunday morning, the team of doctors were happy that his blood testing results appeared to be going in the right direction, and although it was still premature to make any decisions, they started talking about a Monday discharge if his levels all looked good the next morning. One additional concern was that his bilirubin (jaundice) had gone up to a moderate risk category, though no treatment was warranted yet. Some additional good news was that the NICU was able to offer us one of the parent rooms, which allowed us to "room in" and spend the night at the hospital inside the NICU with Everett. Because he was doing well, they allowed us to bring Everett into the parent room so we could stay with him during most of the night. It also meant that Elizabeth could feed him and that no additional formula feeding was needed. We had also roomed-in (in the same room) the night before Oberon was discharged, which again brought up a storm of complex emotions. Oberon wasn't able to be with us in the parent room, but we remembered things like the super high bed with too-small sheets.
In the parent room - free of monitors!
Everett ready to bust out of the NICU.
After that shift change, we ran into the only truly negative experience we had had with any of the staff while we were in the NICU. There had been some miscommunication regarding the need for a car seat check (1.5 hours in the seat after eating to ensure there are no issues with breathing). This apparently is always required for preemies and/or for babies with "respiratory distress." While Evie had been admitted for breathing concerns, his doctors believed it was unnecessary to do this check and hadn't required it. He was never treated directly with oxygen or a respirator - he breathed on his own the whole time and was a full term baby. It appeared that there was a good deal of confusion among the nurses (it's never settling to hear nurses arguing with each other), and on top of that Evie's new nurse was acting like the previous nurse didn't know what she was doing. Chris was visibly confused and irritated (it was also after midnight, so sleep deprivation certainly didn't help). One of the other nurses in Everett's pod took it upon herself to explain what was going on to Chris in the most condescending way imaginable, and in the process managed to say something incredibly hurtful (to any parent, but especially a loss parent). As she tried to explain and justify doing something the doctors didn't believe was necessary (the car seat check), she explained that she was trying to prevent us from laughing and joking around in the front seat while our child spit up and choked to death in the back on the way home. Chris was blown away by the insensitivity and hurtfulness of the nurse. With obvious outrage and disgust, he called the nurse out with a number of choice words. We honestly didn't care one way or the other about the car seat test, but were completely floored by the nurse's comments, especially since she claimed to know about our previous loss. Although we had far more important things to worry about, it was hurtful and we were extremely appreciative of one of the NICU doctors (Dr. A, who we also knew from Oberon's NICU stay) who made it a point to come to us and apologize for the situation. She also took the time to clarify exactly what needed to happen in the morning if we were to be discharged.
The doctors ordered another chest x-ray in the morning. They also did a final set of labs which confirmed all of his numbers were still going in the right direction (and in the safe areas). All of his level looked good on Monday morning, except his bili, which was still gradually rising, but not enough to required immediate treatment (they gave us the option to take a bili blanket home with us to preemptively knock that out, which we decided to do). Dr. S spent some time with us talking through all of his care and results and showed us both chest x-rays side by side (the second of which looked great). Given all of the results, she was convinced that he was doing well and could finally be discharged!
On the afternoon of Monday January the 11th, Everett was finally discharged, and we brought him home!
All dressed and ready to go home!
Three days isn't a long NICU stay by any means, but it was an emotional time for us and felt like forever when it was happening. The doctors aren't 100% certain, but the top theory is that everything really was due to Everett transitioning - apparently a fast delivery doesn't allow babies enough time to fully expand their lungs and get rid of residual fluids. It doesn't seem a high likelihood that he actually had an infection, but there is no way to be sure. Maybe everyone was being extra cautious because of our history, maybe he would have received the same care without it.
Being home with Everett is certainly different than when we were home with Oberon. With Oberon, everything was so heightened. Either Chris or Elizabeth was awake with him 24/7, we had feeding schedules and medication schedules, hospice nurse visits, and awaiting the inevitable. With Everett, we are trying not to let anxiety overwhelm us. We just have to do the normal newborn care things like feed him when he's hungry, burp him when he's gassy, change him when he's dirty, and give him lots of snuggles all the time. We both sleep sometimes (although having an Owlet monitoring his heart rate and O2 saturation at night is pretty much the only reason we can do that).
We've both slipped up and called Everett "Obie" out loud and in our heads. We miss Oberon every time we look at Everett. They look alike, yet different. Sometimes Everett makes a face and it looks just like his brother. Sometimes the way he stretches in our arms takes us back to a similar moment with Obie. There's still crying. There's still a hole in our family. It's a bigger family now, but a member is still missing and that still hurts. Elizabeth still looks at Everett and isn't as bonded as she wished she was. He cries, and her milk comes in, but she doesn't have an emotional response. It's more of a practical response right now. Hopefully the head-over-heels love part is right around the corner, growing every minute.
Hi Chris and Elizabeth. I found your blog from the cosmopolitan article. I have read everett's birth story and have cried through the entire blog understanding every emotion you have gone through. I feel like I am reading my story as I read yours. Our oldest child, our daughter, was born almost 1 year before Everett with a serious diagnosis that we knew prior to birth with a plan for the NICU. She had scans shortly after birth that determined that her condition was much worse than expected (like oberon, not genetic) but at 1 week old we learned that she had suffered a massive stroke of her entire brain (other than the brainstem) and her future was diagnosed like oberon's. We too chose to bring our daughter home on hospice care and got to spend 9 beautiful (but challenging) days at home with her.
ReplyDeleteWe are now 23 weeks pregnant with our rainbow baby. So far he is healthy (not terribly reassuring, as I know you know, once you've been that 1 in ___ statstic) but reading your story about Everett has given me the most peace in preparing for our son's delivery. I guess it's just reading the emotions of a couple that understands and hearing your emotional journey after Everett was born has helped me better know what to expect. Thank you so much for sharing oberon and Everett with the cosmopolitan article and thank you for sharing your blog where I have truly enjoyed being introduced to your sons💙💚
We're glad you found us and that Everett's story resonates with you.
DeleteWe are so sorry to hear about the loss of your daughter. Hospice care is such a gift, but also a very challenging time as you said.
Gentle congratulations on your pregnancy. Hoping for it to be as smooth as possible and the anxiety doesn't get too overwhelming. <3