Okay, this is going to be a long post so bear with me. A lot has transpired over the last few days.
As I type this, Scotty is not home with us. He is in the NICU at a local hospital. The course of events that led up to this is still boggling my mind and please know, if you have called or texted in recent days and I haven't responded, it is because we are literally overwhelmed with what has happened.
The only way I can think to organize my thoughts at this point is to do a time line. This is what happened:
Tuesday, August 18th: Scotty is born!!! Great day
I had some complications after his birth. Long story short, I was unable to go to the bathroom two hours after delivery. I ended up passing out in the bathroom (naked, to my horror) on an L&D nurse. I eventually woke up and dragged back to bed. They took the catheter out but I was still unable to go. No biggie, said everyone, it will just take a few hours.
Several hours later, they put the catheter back in since I still couldn't go. They left it there overnight with a strict warning that if I was unable to go by the time I was discharged, I would have to go home with a catheter in. Not fun. Apparently, two theories were at play: 1.) during pushing, my brain "disconnected" from my bladder, kind like when your arm falls asleep. Those nerves are asleep and we need them to wake up, or 2.) during pushing, the urethra swelled and is causing a blockage from the bladder to the outside world. Wait a little and the swelling with go down.
Wednesday, August 19th: Scotty is doing great at breastfeeding. Good latch, very happy baby.
I am still unable to go. They cath me again (4th cath in 2 days) and send me home. I commented to the post partum nurse that I felt like a suicide bomber as she strapped the bag to my leg. She laughed.
We all head home, happy to be a family.
Thursday, August 20th: Scotty is really fussy and not taking the breast. He is crying a lot. We chalk it up to newborn status and attempt to get him to feed at every opportunity. Brian and I have now had about 5 hours of sleep since Sunday night. (up all night for the birth, little sleep on Tuesday, and NONE on Wednesday).
Friday, August 21st: first ped appointment. Also find red/orange crystals in Scotty's urine, a sign of dehydration. The ped doesn't seem concerned and tells us to keep him at the breast for as long as possible. She gets him to latch on, but it's awful and it hurts. I request a consult with a lactation specialist; they are able to take us that afternoon. Ped would like to follow-up with us on Wednesday of next week.
The LC recommends we open a "breast-aurant" for the weekend. I.e. all boob, all the time. Brian and I are up at all hours, feeding every two hours and trying to wake up the baby to get him to latch on. He is incredibly sleepy and very difficult to wake up. Brian and I continue to become exhausted.
Saturday/Sunday: Feed, feed, feed. No sleep. Feed more. Scotty seems to be drinking more and my milk finally comes in on Saturday afternoon.
Monday, August 24th: follow-up consult with LC. Scotty has only gained 1.5 ounces; he is down almost 15% from his birth weight. LC recommends we begin to supplement with 1oz. of breastmilk after every feeding using an eye dropper. We start this Monday afternoon. Scotty is increasingly sleepy and quiet. We chalk it up his allegedly full tummy.
Tuesday, August 25th: Continue to use the 1oz supplement. Scotty is getting more yellow by the day. I try to keep him in the sunlight (there was none on Sat/Sun due to the weather) but am afraid to take him outside for fear of dehydration (it's 105 degrees outside). He is still taking the breast well and seems to be feeding okay, despite the sleepiness.
Wednesday, August 26th:
***WORST DAY OF MY LIFE TO DATE***
Day of reckoning for Kim. I have to take out the cath at 7:30am and then be at my ob's office by 9:30 to prove to him that yes, I am able to pee on my own.
9:30 comes and goes and guess who can't pee? Yup, that would be me. George takes the liberties of scheduling me an appt with a urologist just down the street from his office. Brian and I call ahead to make sure we have the right office number, only to be told the doctor is in the Henderson office on Tuesdays. Whoops. Brian and I make the long trek to Henderson (and this was DEEP in Henderson, or Hender-tucky, per Brian). I am getting increasing uncomfortable for two reasons - 1.) I need to feed Scotty soon and 2.) I haven't been able to go to the bathroom in almost 4 hours and I drank a bunch of water in anticipation of the big event.
We get to the UR's office only to find a waiting room full of old men. Our appointment was at 11:00am; by 11:30, I am crying and begging the staff to let me use a room to feed my baby. They consent. With Scotty fed, I start to calm down a little.
By 1:00pm, I was a wreck. Again. We had to cancel the ped appointment since we were still deep in Hender-tucky and I was out of my mind with pain of a full bladder. I was crying and rocking in the waiting room when they finally took pity on me and took me back. Five minutes and one bladder empty later, I was much saner, until the UR told me that he would NOT be putting an in-dwelling cath back in, but instead, I need to learn how to "self-cath" until my bladder "wakes up." I am near hysterical as I get him for a foley (in-dwelling) cath, stating I am a new mom with a crazy feeding schedule and really don't want to worry about self-cathing at 4 in the morning with a crying infant. He tells me that it is much more painful for men to cath (like I care - try having a baby) and that it's like "riding a bike." Against my better judgment, I consent. And then they show me how to do it. Ewwwww.
We finally get home, exhausted and overwhelmed. Around 4pm, the LC from Monday calls and asks how Scotty is doing. I tell her about his poop and urine and just general lethargy, and she then tells me, in the scariest tone of voice possible, to get the ped's office immediately. Brian and I move lightening fast, calling the doctor, getting Scotty bundled, and are out the door in four minutes.
The doc orders blood work as I breast feed in her office. At this point, it's 5:30pm and there are no blood centers open, except for this scary one on the east side of town. We head home to allow me to self-cath (took 20 minutes but I did it) and then head out to do blood work. The ped had told me the on-call doctor would call us that night with Scotty's results.
We are home by 8pm and I'm attempting to feed Scotty for the 29th time that day. He just wouldn't wake up. We switch to the bottle with breast milk to make it easier. He is still fussing. I'm exhausted, frustrated, and now, I have cut off my fluid intake for fear of having to self-cath again. Our house is a trainwreck and there were literally piles of laundry everywhere. Emma had officially stopped talking to us (and rightly so).
At 8:30pm, we received the most terrifying phone call of my life: it was the on-call ped. He said, and I quote, "His bilirubin levels are 28. You need to get him to an ER immediately." Anything over 14 is considered too high, and 35 was the point of no return (neurological damage). Scotty was getting yellower by the minute. Apparently, he was not pooping out the bilirubin and so it was building in his system, causing the jaundice.
I rush upstairs to pack a bag while Brian packs Scotty in the car seat when the phone rings again. Ped again, and this time he says, "Have you noticed any changes in his mental state?" I said, yes, he's not waking up. We've been trying to feed him for over a half hour. At that point, he said words I will never forget: "Call 911 RIGHT NOW."
Even typing this, I am crying. I still can't believe it. We had to call 911 to have an ambulance pick up our little guy. They were here in minutes and we were on the road immediately. Scotty hadn't stopped breathing but was completely unresponsive. They put oxygen on him right away and attached the little heart monitors. I cannot describe to you what it feels like to watch people work on your child - your child who is not even the size of a football yet. I was in the front seat of the ambulance practically hyperventilating. They used lights and sirens to get through traffic and we were taken to the hospital in town with the only children's hospital.
Brian, some how, was able to follow behind and met us in the docking area. They wisked us in and there were 20 people in the room instantly. all doing different things like drawing blood, checking vitals, etc. AFter he was declared stable, Brian and I were taken to a quiet room to discuss the baby's condition, and when the doctor asked me if I would like some water, I burst into tears again. I told her the whole sob story about the catheter situation. She took pity on me and walked me over to the adult ER to get yet another catheter after we were done telling her just about every detail of Scotty's nine days of life.
Brian stayed with the baby while I was in the other ER, and I will admit, it was fascinating. The place was hopping for a Wednesday night. The guy next to me was suicidal, and I was so tempted to start talking to him. (I haven't done a suicide risk assessment in months.) I eventually was placed in a room with a nice Latino family that had been in a car accident. I finally got the damn cath and was out the door and back to our little guy in the ped ER after I threatened a nurse I would leave AMA if I didn't get my discharge orders in the next 5 minutes. She understood the situation and thankfully, expediated the situation.
Today, August 27th,
Scotty was transferred to the NICU and more blood work was done.
From what the doctors have said, they are still ruling out any kind of infection and metabolic disorders, but it looks like a straightforward case of dehydration and jaundice. (we are praying it is this straight forward and easy to solve...please, no metabolic disorders.) Scotty was put under the lights right away and also given two boluses to rehydrate him. He will probably remain in the NICU for the next several days. His bilirubin levels are already dropping - at 3am, he was at 21, at 7am, he was at 19.9, and 10am he was 19.3. By the time we left tonight (7:00pm), his level had dropped again to 16. They really want to see him under 14, but want him to be more active and less floppy. Brian and I were able to feed him and hold him today, but only for 30 minutes.
I am still kind of in shock about all of this. I went back and looked through his feeding record and went over it with the doctor this afternoon. Even on the 19th, when we were still in the hospital for his birth, he only had 4 wet diapers. He should have had 6-8. The doctor surmised that he, for whatever reason, began to dehydrate at the hospital, my milk didnt' come in until day 5, and by the time he started to feed in earnest, he was already behind the eight ball. She assured us that there was nothing more we could have done, but I disagree. There were so many missteps along the way, and I am kicking myself for not picking up on them sooner.
I just cannot believe we are in this situation. I am so thankful that 1.) we caught it and 2.) the LC called when she had - had we waited until today (Thursday) for his ped appointment, it, well...it might have been too late. I cannot let myself go there. Or I will simply fall apart.
All I know is that right now, our little guy is safe, well-hydrated, and seems to be on the mend. The nursing staff is amazing and very kind, and we are anxious to get back to him tomorrow. (he's in isolation and we are not allowed to sleep over). He hasn't been cleared for some things yet, like MRSA, so we need to gown up before we go into his room - gown, mask, gloves, etc. It all feels so distant and scary.
But Scotty did open his eyes for several minutes while I was holding him, and he seems to perk up at the sound of my (and Brian's voice). When we couldn't hold him (earlier in the afternoon), we just sat there in the room talking, so he could hear our voices. Brian suggested that he tell him the story of how the Green Bay Packers came to be, and I agreed to play the part of Scotty (and ask potential questions he might have asked, if he had language skills). His little heart rate settled down while we were talking and I'd like to think he knew we were there.
We are hoping he continues to make great progress and will be home with us in the next several days. Again. both conditions are 100% treatable with no long-lasting affects. I'm not quite sure how I feel about breast feeding at this point, since I am absolutely shell-shocked, but we'll cross that bridge when we get there.
Big thanks to everyone who has sent us such lovely gifts over the last few days --- our house is literally brimming with flowers, cards, books, bears (Boschee bear! I love it), baby clothes, baby blankets, and my personal favorite, Lou Malnati's pizza (Krista, was that you???? It didn't come with a card). Thank you notes will be forthcoming, but please don't hold your breath. Think...September.
I'll try to keep everyone updated if you are interested. In return, please keep our little guy in your thougths and prayers.
As I type this, Scotty is not home with us. He is in the NICU at a local hospital. The course of events that led up to this is still boggling my mind and please know, if you have called or texted in recent days and I haven't responded, it is because we are literally overwhelmed with what has happened.
The only way I can think to organize my thoughts at this point is to do a time line. This is what happened:
Tuesday, August 18th: Scotty is born!!! Great day
I had some complications after his birth. Long story short, I was unable to go to the bathroom two hours after delivery. I ended up passing out in the bathroom (naked, to my horror) on an L&D nurse. I eventually woke up and dragged back to bed. They took the catheter out but I was still unable to go. No biggie, said everyone, it will just take a few hours.
Several hours later, they put the catheter back in since I still couldn't go. They left it there overnight with a strict warning that if I was unable to go by the time I was discharged, I would have to go home with a catheter in. Not fun. Apparently, two theories were at play: 1.) during pushing, my brain "disconnected" from my bladder, kind like when your arm falls asleep. Those nerves are asleep and we need them to wake up, or 2.) during pushing, the urethra swelled and is causing a blockage from the bladder to the outside world. Wait a little and the swelling with go down.
Wednesday, August 19th: Scotty is doing great at breastfeeding. Good latch, very happy baby.
I am still unable to go. They cath me again (4th cath in 2 days) and send me home. I commented to the post partum nurse that I felt like a suicide bomber as she strapped the bag to my leg. She laughed.
We all head home, happy to be a family.
Thursday, August 20th: Scotty is really fussy and not taking the breast. He is crying a lot. We chalk it up to newborn status and attempt to get him to feed at every opportunity. Brian and I have now had about 5 hours of sleep since Sunday night. (up all night for the birth, little sleep on Tuesday, and NONE on Wednesday).
Friday, August 21st: first ped appointment. Also find red/orange crystals in Scotty's urine, a sign of dehydration. The ped doesn't seem concerned and tells us to keep him at the breast for as long as possible. She gets him to latch on, but it's awful and it hurts. I request a consult with a lactation specialist; they are able to take us that afternoon. Ped would like to follow-up with us on Wednesday of next week.
The LC recommends we open a "breast-aurant" for the weekend. I.e. all boob, all the time. Brian and I are up at all hours, feeding every two hours and trying to wake up the baby to get him to latch on. He is incredibly sleepy and very difficult to wake up. Brian and I continue to become exhausted.
Saturday/Sunday: Feed, feed, feed. No sleep. Feed more. Scotty seems to be drinking more and my milk finally comes in on Saturday afternoon.
Monday, August 24th: follow-up consult with LC. Scotty has only gained 1.5 ounces; he is down almost 15% from his birth weight. LC recommends we begin to supplement with 1oz. of breastmilk after every feeding using an eye dropper. We start this Monday afternoon. Scotty is increasingly sleepy and quiet. We chalk it up his allegedly full tummy.
Tuesday, August 25th: Continue to use the 1oz supplement. Scotty is getting more yellow by the day. I try to keep him in the sunlight (there was none on Sat/Sun due to the weather) but am afraid to take him outside for fear of dehydration (it's 105 degrees outside). He is still taking the breast well and seems to be feeding okay, despite the sleepiness.
Wednesday, August 26th:
***WORST DAY OF MY LIFE TO DATE***
Day of reckoning for Kim. I have to take out the cath at 7:30am and then be at my ob's office by 9:30 to prove to him that yes, I am able to pee on my own.
9:30 comes and goes and guess who can't pee? Yup, that would be me. George takes the liberties of scheduling me an appt with a urologist just down the street from his office. Brian and I call ahead to make sure we have the right office number, only to be told the doctor is in the Henderson office on Tuesdays. Whoops. Brian and I make the long trek to Henderson (and this was DEEP in Henderson, or Hender-tucky, per Brian). I am getting increasing uncomfortable for two reasons - 1.) I need to feed Scotty soon and 2.) I haven't been able to go to the bathroom in almost 4 hours and I drank a bunch of water in anticipation of the big event.
We get to the UR's office only to find a waiting room full of old men. Our appointment was at 11:00am; by 11:30, I am crying and begging the staff to let me use a room to feed my baby. They consent. With Scotty fed, I start to calm down a little.
By 1:00pm, I was a wreck. Again. We had to cancel the ped appointment since we were still deep in Hender-tucky and I was out of my mind with pain of a full bladder. I was crying and rocking in the waiting room when they finally took pity on me and took me back. Five minutes and one bladder empty later, I was much saner, until the UR told me that he would NOT be putting an in-dwelling cath back in, but instead, I need to learn how to "self-cath" until my bladder "wakes up." I am near hysterical as I get him for a foley (in-dwelling) cath, stating I am a new mom with a crazy feeding schedule and really don't want to worry about self-cathing at 4 in the morning with a crying infant. He tells me that it is much more painful for men to cath (like I care - try having a baby) and that it's like "riding a bike." Against my better judgment, I consent. And then they show me how to do it. Ewwwww.
We finally get home, exhausted and overwhelmed. Around 4pm, the LC from Monday calls and asks how Scotty is doing. I tell her about his poop and urine and just general lethargy, and she then tells me, in the scariest tone of voice possible, to get the ped's office immediately. Brian and I move lightening fast, calling the doctor, getting Scotty bundled, and are out the door in four minutes.
The doc orders blood work as I breast feed in her office. At this point, it's 5:30pm and there are no blood centers open, except for this scary one on the east side of town. We head home to allow me to self-cath (took 20 minutes but I did it) and then head out to do blood work. The ped had told me the on-call doctor would call us that night with Scotty's results.
We are home by 8pm and I'm attempting to feed Scotty for the 29th time that day. He just wouldn't wake up. We switch to the bottle with breast milk to make it easier. He is still fussing. I'm exhausted, frustrated, and now, I have cut off my fluid intake for fear of having to self-cath again. Our house is a trainwreck and there were literally piles of laundry everywhere. Emma had officially stopped talking to us (and rightly so).
At 8:30pm, we received the most terrifying phone call of my life: it was the on-call ped. He said, and I quote, "His bilirubin levels are 28. You need to get him to an ER immediately." Anything over 14 is considered too high, and 35 was the point of no return (neurological damage). Scotty was getting yellower by the minute. Apparently, he was not pooping out the bilirubin and so it was building in his system, causing the jaundice.
I rush upstairs to pack a bag while Brian packs Scotty in the car seat when the phone rings again. Ped again, and this time he says, "Have you noticed any changes in his mental state?" I said, yes, he's not waking up. We've been trying to feed him for over a half hour. At that point, he said words I will never forget: "Call 911 RIGHT NOW."
Even typing this, I am crying. I still can't believe it. We had to call 911 to have an ambulance pick up our little guy. They were here in minutes and we were on the road immediately. Scotty hadn't stopped breathing but was completely unresponsive. They put oxygen on him right away and attached the little heart monitors. I cannot describe to you what it feels like to watch people work on your child - your child who is not even the size of a football yet. I was in the front seat of the ambulance practically hyperventilating. They used lights and sirens to get through traffic and we were taken to the hospital in town with the only children's hospital.
Brian, some how, was able to follow behind and met us in the docking area. They wisked us in and there were 20 people in the room instantly. all doing different things like drawing blood, checking vitals, etc. AFter he was declared stable, Brian and I were taken to a quiet room to discuss the baby's condition, and when the doctor asked me if I would like some water, I burst into tears again. I told her the whole sob story about the catheter situation. She took pity on me and walked me over to the adult ER to get yet another catheter after we were done telling her just about every detail of Scotty's nine days of life.
Brian stayed with the baby while I was in the other ER, and I will admit, it was fascinating. The place was hopping for a Wednesday night. The guy next to me was suicidal, and I was so tempted to start talking to him. (I haven't done a suicide risk assessment in months.) I eventually was placed in a room with a nice Latino family that had been in a car accident. I finally got the damn cath and was out the door and back to our little guy in the ped ER after I threatened a nurse I would leave AMA if I didn't get my discharge orders in the next 5 minutes. She understood the situation and thankfully, expediated the situation.
Today, August 27th,
Scotty was transferred to the NICU and more blood work was done.
From what the doctors have said, they are still ruling out any kind of infection and metabolic disorders, but it looks like a straightforward case of dehydration and jaundice. (we are praying it is this straight forward and easy to solve...please, no metabolic disorders.) Scotty was put under the lights right away and also given two boluses to rehydrate him. He will probably remain in the NICU for the next several days. His bilirubin levels are already dropping - at 3am, he was at 21, at 7am, he was at 19.9, and 10am he was 19.3. By the time we left tonight (7:00pm), his level had dropped again to 16. They really want to see him under 14, but want him to be more active and less floppy. Brian and I were able to feed him and hold him today, but only for 30 minutes.
I am still kind of in shock about all of this. I went back and looked through his feeding record and went over it with the doctor this afternoon. Even on the 19th, when we were still in the hospital for his birth, he only had 4 wet diapers. He should have had 6-8. The doctor surmised that he, for whatever reason, began to dehydrate at the hospital, my milk didnt' come in until day 5, and by the time he started to feed in earnest, he was already behind the eight ball. She assured us that there was nothing more we could have done, but I disagree. There were so many missteps along the way, and I am kicking myself for not picking up on them sooner.
I just cannot believe we are in this situation. I am so thankful that 1.) we caught it and 2.) the LC called when she had - had we waited until today (Thursday) for his ped appointment, it, well...it might have been too late. I cannot let myself go there. Or I will simply fall apart.
All I know is that right now, our little guy is safe, well-hydrated, and seems to be on the mend. The nursing staff is amazing and very kind, and we are anxious to get back to him tomorrow. (he's in isolation and we are not allowed to sleep over). He hasn't been cleared for some things yet, like MRSA, so we need to gown up before we go into his room - gown, mask, gloves, etc. It all feels so distant and scary.
But Scotty did open his eyes for several minutes while I was holding him, and he seems to perk up at the sound of my (and Brian's voice). When we couldn't hold him (earlier in the afternoon), we just sat there in the room talking, so he could hear our voices. Brian suggested that he tell him the story of how the Green Bay Packers came to be, and I agreed to play the part of Scotty (and ask potential questions he might have asked, if he had language skills). His little heart rate settled down while we were talking and I'd like to think he knew we were there.
We are hoping he continues to make great progress and will be home with us in the next several days. Again. both conditions are 100% treatable with no long-lasting affects. I'm not quite sure how I feel about breast feeding at this point, since I am absolutely shell-shocked, but we'll cross that bridge when we get there.
Big thanks to everyone who has sent us such lovely gifts over the last few days --- our house is literally brimming with flowers, cards, books, bears (Boschee bear! I love it), baby clothes, baby blankets, and my personal favorite, Lou Malnati's pizza (Krista, was that you???? It didn't come with a card). Thank you notes will be forthcoming, but please don't hold your breath. Think...September.
I'll try to keep everyone updated if you are interested. In return, please keep our little guy in your thougths and prayers.
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