The other day you got the story of Bert's birth, from when my labor started through delivery. Everything I wrote is true to the best of my ability to remember it all, but unfortunately it isn't the whole truth. I didn't want to combine these two stories because I wanted to separate the happy story from the sad story that followed. I think I owe Bert that because we are so happy he was born, and to us he's always been perfect.
I need to start by saying that Joe and I had absolutely NO idea that any of this would happen. We had no indication that Bert may have any medical problems at all. My pregnancy was completely uneventful. I did have some nausea and fatigue during the first trimester, and we did require further testing because his first chromosomal test came back with elevated risk (turned out to be fine), but other than that, nothing eventful happened. My blood work was always normal, my blood pressure was always normal, his anatomy scan was fine, I measured spot on every week for the week I was. I barely had any swelling, I didn't have trouble sleeping, his heart rate was never an issue. I say all this to say, in Joe's and my minds we'd have the baby, spend a couple days in the hospital doing normal first-time parent things, and take our kid home to adjust to our new life as a family of three.
Unfortunately it didn't quite happen like that.
I must start by saying that I might not completely remember the order in which all of this happened due to general fatigue from labor, delivery, and having a newborn, coupled with how fast this all happened, but I'll do my best to tell his story accurately.
I mentioned in Part 1 that our hospital does "Golden Hour," and we actually got to have that with Bert. We were told that Golden Hour is standard practice unless there's a medical necessity to have the newborn treated for something right away. Since we had Golden Hour, it never entered our heads that something might not be 100% right with Bert. In retrospect, maybe our first clue should have been that the two nursery nurses stayed in the room with us the whole time when we had been told it would only be Joe, Bert, and me. It didn't enter my head at the time, though. After Golden Hour, though, we learned that Bert had been observed as being "jittery" at birth, which was an indication of low blood sugar. He was also observed as being "ruddy," which we found out later is a sign of jaundice. I had always thought jaundice turned a baby yellow, which is true, but apparently ruddy red is a sign as well. Bert was given two glucose gels and fed formula shortly after Golden Hour in an attempt to right his blood sugar. In addition, we were told his body temperature was too low and he needed to be put under warming lights. Shortly after being moved from L&D to our post-partum room, Bert was taken from us to be put under warming lights, and we weren't allowed to go with him. When he came back to us, he was wearing a long sleeved tee shirt, pants, two hats, and two pairs of socks and was wrapped in two blankets. We couldn't do skin to skin -- Joe never got to, and I only got to during Golden Hour -- because he was wrapped up in so many layers because he was too cold. We also learned that his blood sugar had stabilized at that point, but unfortunately that wouldn't last. In addition it's important to note that blood sugar in an infant is tested by doing heel sticks, which Bert had to endure multiple times in his first hours and days of life. More on that later.
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| Post-birth formula and glucose gel. |
On Monday morning (the day after his birth), we were told that Bert had warmed up, so we were finally able to remove some of his layers. Sadly, we also found out that day that his bilirubin levels were incredibly high, and he needed to be put under jaundice lights. So we went from holding our child in multiple layers of clothes and blankets to holding him smashed between two sets of jaundice lights. He also had to wear sunglasses to protect his eyes from the lights, so we didn't get to see his eyes either. He was only allowed out of the lights for 20 minutes at a time to breastfeed. A pediatrician also visited us to let us know that his blood sugar was critically low again. She said she had given him another glucose gel, but three was as many as he could have. She told us that she was recommending we supplement my breast milk with formula to try and get his level back up. She also told us if his level did not stabilize, she would have to admit him to the NICU. Our wonderful nurse (truly, truly a gift from God -- I'll be writing a whole post just about her later) helped us get him on a feeding plan that would accommodate both his need to get his blood sugar up as well as his need to be under the jaundice lights as much as possible. It was intense. I was allowed to breastfeed him for 10 minutes per side only, at which time I'd hand him off to Joe. Joe would put Bert back between the lights and feed him a certain amount of milliliters of formula while I pumped for 15 minutes. After that, we would spoon feed Bert however much I had pumped. It was like doing really intricate choreography. And I know this might not sound like that big of a deal, but what was extra sad was that the only thing Bert had done well at the hospital -- truly the only thing he didn't fail -- was breastfeeding. He was a champion latcher from the first hour of life. The lactation consultant who came to visit us said she was so impressed with how well he was latching on and feeding. Bert was so good at it that she taught us a more advance breastfeeding technique and also told us that she would usually come back and visit the next day but she didn't feel like we needed that and to call her if we needed anything. So the only thing Bert was good at -- breastfeeding -- wasn't enough to help him. The only positive I can say about this is that Joe was a critical member of Bert's ability to eat, when usually that is the domain of the mother only. Bert also had to have his blood sugar tested before every feeding, which, again, means consistent heel sticks. He was also routinely having his blood taken to test his bilirubin levels.
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| In-hospital jaundice lights. |
Also on Monday, Bert was given his first hearing test. He failed it. The audiologist told us not to worry too much, a lot of times newborns have too much fluid in their ears, and she'd be back the next day to check him again. When she returned on Tuesday, he failed the second in-room hearing test and was once again taken from us to be given a more intense hearing test. Joe and I waited on pins and needles till the audiologist came and told us "He almost passed." Meaning, Bert failed three hearing tests and will have to take another test scheduled at the end of this month. While this is hard for so many reasons, here's one you might not be thinking of: when your newborn is enduring painful things like heels sticks and blood draws and you can't stop it from hurting or even hold him while it's happening, what do people tell you? They tell you to talk to him so he can hear your voice and be comforted. And Joe and I are like -- We can't even do that confidently because he might not even be able to hear us.
If you're keeping score, in about 36 hours of life, Bert was told:
- His body temperature was too low
- His bilirubin level was too high
- His blood sugar was too low
- He might be deaf or have hearing challenges
As you can imagine, Joe and I were basically like deer in headlights at this time. We were first-time parents, had just labored for 26+ hours and delivered a baby, we had been up all night and not getting any sleep at all, and our child just kept getting hit with one problem after another. In the midst of this, we found out that the cause of his two major issues -- jaundice and low blood sugar -- was a high hematocrit level. Do you know what that is? I really hope not because no one should. It means that Bert had too many red blood cells. Did you know this was even a thing to worry about? I didn't. We have learned a lot about hematocrit levels over the past days of Bert's life. Apparently a lot of babies are born with high hematocrit levels but no one ever knows because it's not something hospitals routinely check because almost all newborns who have this are able to self-correct quickly. Bert's level was checked because of the low blood sugar and jaundice, but it was hoped he'd also self-correct.
He didn't. More on that to come. (Weirdly, in the couple weeks before Bert's birth, Joe and I had been watching this show about climbers on Mt. Everest and had learned about extra red blood cells and their effects on one's body.)
Bert did face one more small complication that I don't feel comfortable talking about publicly, but suffice it to say that Joe and I were just completely overcome. Basically all I could do was cry. I had held my baby for only a short time without the added clothes and blankets or jaundice lights. Feeding him was not peaceful at all due to the militant process we had to follow. Joe and I had to sit and listen to our baby scream and cry as he endured heel stick after heel stick (that "click" will haunt me forever) and blood draw after blood draw. His poor feet were so banged up, and he finally ended up having to have venous draws in his arm as well. I would cry every single time Bert would be held down for a stick and scream and cry. (Sadly, this would continue throughout his first week of life.) I was so worried that he would just give up because he was crying out for help so often, but no help ever came. His father and I couldn't do anything.
At a certain point when Bert was returned to us after having to have gone to the nursery for some sort of check or test (can't remember what for), he returned without his socks on. His nurse handed them to me and said, "I'm so sorry. He got blood on these." And I just stood there holding my two-day-old baby's bloody socks.
We received two pieces of good news on Tuesday, which were his blood sugar had stabilized (all his nurses and techs celebrated with us ... love those people) and, although his bilirubin level had not really gone down, Bert had gotten older so it was now at a more acceptable level. We were finally able to hold him without lights. The hospital finally decided Bert could go home Tuesday night, provided we had an appointment with the pediatrician the next day. Luckily I was able to call and make one. We went home around 9 p.m. Tuesday.
On Wednesday morning, Joe, my mom, and I took Bert to his first pediatrician's appointment. Of course, he needed another blood draw to test his bilirubin, his blood sugar, and his hematocrit. Unfortunately, the office's in-house lab wasn't able to get what they needed to check all of those things, so we left with orders for another blood draw back at his birth hospital. (30 minutes from our house.) The doctor also sent us home with jaundice lights we could use at home because she had observed that he was really ruddy and red again. She said she'd call us with our blood draw results as soon as she got them, and based on his bilirubin level would let us know if we needed to use the lights or not.
By the time we left the doctor, it was after noon. Joe and I decided to take Bert home and feed him and ourselves and change him before heading back to the hospital for the blood draw. We drove the 30-ish minutes to the hospital and got there around 4 p.m. Bert had yet another blood draw (at this point I'd lost count of how many times he'd been stuck) and then we headed back toward our home. A few minutes before we arrived at our house, we got a call from Bert's pediatrician letting us know that the lab had called her and said Bert's blood had clotted before they could test it and we needed to go back and get another blood draw. At this point, it was almost 5:30 p.m., Bert had already had his blood taken twice that day, and he needed to eat. Not to mention we were about to have to drive another 30 minutes and back in metro Atlanta rush hour. Joe was furious, my mom (who was with us) was furious, and I was furious. As Joe drove us back to the hospital, I called patient services in tears to let them know how upset I was that Bert was having to go through this again. I feel like I am generally a nice person, but I was at the point where I had HAD IT. Plus, as my mom said, Joe and I are Bert's only voice, and it's our job to advocate for him. I let patient services know exactly how we felt about our four-day-old son -- who had already endured far more than any newborn should have to -- having to have his blood taken for the THIRD TIME that day when he needed to be home with his family. Patient services representatives met us at the outpatient lab, which we found out they kept open late for us, and we were blessed by the BEST phlebotomist ever who treated us so well, was so kind to us, and listened to me cry and tell her all Bert had been through. She also was able to get what she needed from Bert with only one stick, and that was especially hard as the doctor had decided to have his blood drawn from his arm and not his foot that time. She also stayed with us as we waited for confirmation that Bert's blood was testable that time.
On the way home from that blood draw, Bert's pediatrician called and informed us that his bilirubin level was too high again and we'd have to use the at-home lights as close to 24 hours a day as possible. She also told us that his hematocrit level was too high again also. She told us we needed to watch for signs of dehydration, lethargy, and difficulty breathing. His plan of treatment was to keep him on the lights until 5 p.m. the following day when we'd need to drive Bert back to the hospital for yet another blood draw to check his levels. At that point, his doctor just said we'd take it day by day and evaluate his blood every 24 hours.
While the hospital light therapy lights were a bit softer and more malleable, the at-home light was as hard as a rock. My mom compared it to a Kindle or an iPad, and that's pretty much a spot-on comparison. We had to lay our son on this super hard light, wrap him in a blanket, and hold him. We had to feed him like that and try to get him to sleep like that, too, which, as I'm sure you can imagine, was basically impossible. Luckily, my parents were in town so we had four adults who were able to help hold him and evaluate him as well.
The following evening (it was now Thursday), Joe and I drove Bert back to the hospital around 5 p.m. for his daily blood draw. We were blessed with the same phlebotomist (her name is Tammy) who once again treated us with so much care and kindness. She once again stayed late to wait for a call to confirm that Bert's blood was testable. One of the receptionists or office administrators or whatever told Tammy (in front of us) that they were closing and to make us wait in the surgery waiting room. But Tammy said no -- she'd stay right there and wait with us until she got the confirmation call. Tammy, we love you. On the drive home, the pediatrician called again, told us that once again the bilirubin levels had gone up and the hematocrit was still up. Needless to say, Joe and I were just frustrated and devastated and completely at a loss at that point. The plan was to keep him on the lights and evaluate him again the next day. Joe and I got Bert home where my parents had prepared dinner. We took Bert upstairs to our room to put him back under the lights and feed him and then planned to join my parents for dinner. A few minutes after we started feeding him, Bert's pediatrician called again. She said a lot of things, but the gist was that a newborn with a high hematocrit level was out of her area of expertise because it is rare that it is dealt with outside the hospital. She said she felt so bad that she couldn't give us a timeline of how long we'd be dealing with this issue or really give us any answers at all. She told us that she consulted the neonatologist at his birth hospital as well as an emergency room doctor at the children's hospital, and pretty much everyone agreed that Bert needed to be re-hospitalized for fluids and constant evaluation in hopes his bilirubin and hematocrit levels would get to an acceptable level. Hanging up the phone and having to tell Joe (and my mom and dad) that we needed to pack Bert up for the emergency room was really tough. My parents helped by quickly feeding us dinner as we finished feeding Bert as well as helping us organize a few clothes and snacks to take with us. I don't know what we would have done without my parents around here to help care for the dogs and the house at a moment's notice.
Joe and I drove Bert the 45 minutes to the children's hospital emergency room, and we arrived around 9 or 10 p.m. As I'm sure you can imagine, we were scared, exhausted, upset, and worried, and having to hold our 5-day-old baby in line to check in at the emergency room while all around us these kids were like coughing and stuff around my immunity-less newborn about pushed me over the limit. Luckily a nurse intervened and let Bert and me wait in a private room while Joe checked us in.
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| Emergency room at Scottish Rite. |
Over the next several hours, Bert endured getting an IV placed, a couple more blood draws, and visits with two doctors. At some point in the early morning -- 4 or 5 a.m. maybe -- we were told Bert was being admitted as his hematocrit had soared to 72 and he needed more fluids and monitoring. We got taken to a room a couple hours later, and I can probably commit to saying that was the most exhausted and defeated I've ever felt. Over the next several hours, Bert continued to endure blood draws in his feet and arms, interruptions every couple of hours, and a lot of uncertainty as to what would happen next. Joe and I tried to grab any little sleep we could, both of us squeezing into a single hospital bed, trying to take care of our baby the best we could as new parents who had no idea what they were doing. We ended up seeing a pediatrician who essentially said that Bert's prognosis for long -term health was very good, but that the only way we could leave was to get Bert's hematocrit level under 65. I believe 50-55 is actually ideal, but the doctors were willing to accept 65. We would wait on pins and needles after every blood draw only to find out he was at 66 or some other still-too-high number. At one point, Bert ended up kicking out his own IV (the nurse still has no idea how he was able to do it ... more on Bert's mutant strength another time), but the doctor had decided to go ahead and try and see if Bert's body could rid itself of red blood cells without the extra fluid. To make a long story short, it didn't work, and we got to watch as Bert endured yet another IV placement. Of course, he continued to endure multiple daily blood draws also. Both of Bert's feet and arms were so banged up it was heartbreaking. He couldn't -- still can't really -- stand to have his feet touched because he knew what would shortly follow. On Sunday morning -- his one-week birthday -- we found out Bert's hematocrit had hit 64.5, which the doctors would accept to allow him to leave. The piece of really good news was that his bilirubin level was acceptable, and the jaundice was no longer an issue. GOOD BYE LIGHTS! The only condition for leaving was that he would have to eat two times and continue to have wet and dirty diapers. As he has always been a champion eater (thank GOD), we were finally released from the children's hospital under the condition we'd see his pediatrician the next morning. We got home around 6 p.m. Sunday evening where my parents still were and where Joe's parents had arrived as well.
On Monday morning, Joe and I took Bert to see his pediatrician. Joe and I had talked and we agreed we needed to get in a mental place where we knew we would have to take Bert back to his birth hospital for another blood draw. His pediatrician checked him over and said she was happy to see he was back at his birth weight and that his color was looking better. As we expected, she sent us off with lab orders for a blood draw. Joe, his mom, and I took Bert to the lab with specific orders for a venous draw. (We had learned that the foot stick was not as accurate as the venous draw.) We were called back by a really young looking girl who said to us, "Which foot would you like?" I looked at Joe, and I was like, "NO NO NO NO. This has to be a venous draw." The girl kind of looked at us, and said okay, and took us to a different room. Sitting in the room with her back to us was this older lady doing paperwork. The young girl told her she needed the room, and I heard the older lady say she was doing paperwork that had people's personal info on it and she needed time to move, blah, blah. I'm pretty sure she didn't see me standing there, so at that point, I'm like "I AM SO SORRY (not) FOR THE INCONVENIENCE, BUT MY WEEK-OLD SON ..." and proceeded to begin to tell the story of Bert. I glanced over, and guess who I saw in the room? TAMMY! I looked at her and was like, "THANK GOD YOU ARE HERE!" Needless to say, Tammy took the lead on Bert's blood draw and once again got it in one stick. She also once again stayed with us until we had confirmed Bert's blood was testable. The last thing Tammy said to us was, "I really hope I don't see you guys again." We were like, "We hope we don't see you again either." (P.S. If you're wondering if I filled out a comment card about Tammy, I totally did. I only wish there had been more lines on the paper for me to write more compliments!)
Still feeling worried and defeated, we got back in the car for the 30-minute drive home. There was always a rush order on Bert's blood draws, so we knew it was likely his pediatrician would call us before we even got home. The car ride was tense as I clutched my phone, waiting for the call. Finally, it came. The phone rang, I said hello, and his pediatrician said, "So I have Bert's results. It's really good news. His hematocrit is 58."
FIFTY EIGHT?!? The day before it had been 64.5! How did he get it to 58 on his own in less than 24 hours?!?
His pediatrician couldn't even explain it. She had no idea. (We knew, though: prayer. SO MANY PEOPLE had been praying for Bert. Like my parents' dentist literally had his Bible study group praying for Bert. We love you Dr. Wild!) Then I heard the best words I have ever heard:
Dr. Johnson: "So, if you and your husband are comfortable with it, my plan of action for Bert is to just let him be. Let him be a baby. We'll see you back in the office for his one-month check up."
Joe and I were overcome. Our baby -- who had never gone one day of his life without a doctor's visit, a hospital stay, a blood draw, jaundice lights, etc. -- was finally going to get to wake up the following day and JUST BE A BABY.
So that is the real story of Bert and what happened to him.
These are the straight facts, but there is also a lot to say about the emotional and mental effects of all of this on Joe and me, and I have so many thoughts on that. I plan to write more posts about all of this, so stay tuned for my thoughts on accepting reality, emotional and mental health, and Bert and my post-partum nurse, Rachel.
If you've made it this far in the story, thank you so much. It has helped me tremendously to write everything down.
Also, if you knew this story as it was unfolding and prayed for Bert, we love you so much and can't thank you enough. A special thanks to our families, Mel, Colleen, Story, Sarah, Jena, Maggie, Catherine, Daniel, the Piaskowskis, the Mayeses, and everyone at Fatima.
