A shot of Balen with my camera phone, with Michel's hand touching his leg through the opening in the side of the incubator. The bililights cause this weird screen flickering.Most of you already know about this, as we were able to get the word out to the core folks. Some of you were left out of the notification, sorry, but we had other things to do.
The situation:
Balen developed a bit of jaundice over the last couple days, which is quite common among newborns, and even more common with preemies (premature babies). Balen was born at 36 weeks, 6 days, which is just barely considered preemie, but preemie nonetheless. He ended up with a very high level of bilirubin in his blood, at the highest, 26.1 mg/dL, which is high enough to get us to the hospital as fast as possible for phototherapy (shining special blue-white fluorescent lights, called bililights, on the baby to break down the bilirubin). We rushed to the hospital after the initial findings, and as of last report, Balen is back down to 21.3; which is a huge drop for only 3 hours in phototherapy. This is good. Why is this high level of bilirubin a problem? Possible brain damage (Kernicterus in this case: Surviving infants usually develop a severe form of athetoid cerebral palsy, hearing loss, dental dysplasia, paralysis of upward gaze and, less often, intellectual and other handicaps.). There will be another test at midnight tonight to see if the improvement continues. EDIT: That just came back, it's now down to 18.8! Hallelujah! Praise God!
Please keep praying, it's working.
Now the bottom line has been laid, lets build on the situation to give you a better understanding. For those of you with medical training, please bear with me, and feel free to correct what little I have been able to learn so far.
What causes the jaundice (yellow coloring to the skin) is a higher than normal level of bilirubin in the blood. Bilirubin is a chemical breakdown product of hemoglobin, which is basically the red blood cells moving oxygen and stuff through your body. When the hemoglobin breaks down, bilirubin is one of the by-products. Newborns are producing quite a bit of red-blood cells immediately after birth to help move all this oxygen in a way quite new to the baby: from the lungs to the tissue. All this extra production means extra red-blood cells that need to be tossed out when they're used up. However, the newborn has a very new liver that hasn't had to do much work before. Hence, a very common build up of bilirubin.
What went wrong here, is that Balen accumulated quite a large amount of bilirubin. I have not been able to find out just what amount of bilirubin is acceptable in a baby, but one range I heard was 17-18 mg/dL as the upper limit before action should be taken. Our first test today around 12pm resulted in 25.5. We had the first pediatrician visit, and due to the jaundice (Balen had gotten more yellow by today than we had seen so far) the doc ordered a blood test at the local hospital (Virtua Memorial Hospital in Mount Holly, NJ). We did that and went home.
To do this, they have to prick the heel, much like the initial blood culture taken after birth. They have this little tool that looks like a mini container of floss, except it has a button, and a blade. They line up the blade end against the heel, and then they press the button. It snaps and quickly jabs a 2mm or so long cut in the skin, deep enough to draw plenty of blood. The reason for this method is the baby doesn't exactly have good veins to draw blood from. If the baby's foot is on the cool side (not warm) they have to then squeeze the foot repeatedly to get the blood to flow out in a usable amount, which is very little. Now, I am a grown 30 year old military dude who has now been stuck by all manner of steel instruments to keep me up with vaccinations, yearly blood tests, etc. I watch and am rather fascinated by the event, and often help the technician by holding vials, pointing out my vein, etc. In other words, it no longer phases me. I never got to see this happen with Abigail. When Balen had it done on Saturday by the midwives, I was cooking lunch. So, today, when I watched this for the first time, I was extremely surprised by how light-headed I got watching this procedure. Babies do not like this procedure. JONATHAN does not like this procedure. It was horrible to watch, made all the worse by the necessity of the procedure, and my empathatic nature. At the end, I mustered what macho I could, and told the wife. She asked me if SHE should carry Balen. I wasn't that bad...
So, at 2:15 or so in the afternoon, we get a call from the pediatrician with the results. Michel answers, and I watch her face change. My heart sunk. Michel puts the doc on the speakerphone and we listen as the doc tells us we need to get Balen to the hospital immediately, they are waiting to admit us on the 3rd floor for phototherapy. Michel was rather upset at this point, and I'm getting kind of angry at this particular doc's bedside manner. I start grilling the doc to find out what is really going on and to make sure that this isn't some form of over-reaction based in a world more ready to medically intervene than is usually necessary. It turns out Balen's bilirubin was measured at 25.5 mg/dL. This means nothing to us, but the doc isn't expounding much at all. I say thank you and hang up.
I hold Michel for a bit, as she is visibly shaken and in tears. I am switching gears into a very logical mental state to evaluate all options, prioritize the available responses, and most importantly, take action. I am also trying not to think about what all this just might mean; besides, there's more important things to do. Michel gets cracking on gathering the baby. I get on the phone with the midwives whom I am much more willing to trust, as they have demonstrated a very like-minded approach to the whole baby-thing. I talk with Pam, who says 25 is very high, in fact higher than any other number she has seen. She's been doing this for quite a while, so this is when the first bit of worry breaks through. She tells us to get to the hospital as soon as we can. I ask her why? What are the possible ramifications? She says, "brain damage". That bit of worry just peaked a bit. I ask a couple other questions to make sure I know a little bit more about what is going on, all the while gathering stuff for the trip (diaper bag and it's various contents, some stuff to keep us occupied while we're waiting, and some water and gatorade).
By 2:45pm we were at the hospital. They were clearly expecting us. The nurses show us to our room, and tell us to get Balen naked. We rather efficiently work together to get this done. Did I ever mention how good a team Michel and I make? They ask us a couple questions, they weigh and measure Balen, and the hospital doc comes in. He starts explaining the options: phototherapy, if that doesn't work, transfusion. 1 in 100 of babies with this high a number end up with brain damage, so chances are quite good there won't be any problem as long as the number comes down. I interrupt to say, "So what's keeping us from getting him in there now?" See if you can guess... Sure enough, I have to admit the child before they'll do anything. So I bolt down to admission, sign the paperwork and get back upstairs to hear Balen screaming in the other room while they are doing the heel prick thing. I had a moment to myself, and it kind of all rolled in on me, and I started tearing up. I took a deep breath and found Michel, and talked some more with the doc to see if any of the events of the last couple days had any bearing, or if the healthy breastfeeding with Abigail made any difference. It didn't.
We got Balen back, and put him under the lights. His right arm is all wrapped up for the IV, and he has this skin temperature sensor stuck to his belly. He wears these cool looking space age foam goggles to block any light from reaching his eyes. Later they added an oxygen sensor to his left big toe.
We soon got the results from the bilirubin test, now 26.1. But these tests have an error of +/- 2, so it's not to worrying. The nurse fed Balen a bottle of formula, and we gathered around to watch. She lifted him up to a sitting position to burp him, which he immediately complied with, and then looked around. His eyes went straight to Mommy, then Daddy, then the nurse, at whom he just looked at for a second, then promptly ignored. Good to see him back on track.
The most telling result will be the 6pm test. I was on the road picking up Abigail from my friends place (they picked her up and fed her dinner) and explaining the situation to her, when the results came back. The nurse was supposed to call me, but she had already left. I should have counted how many times Abigail asked, "Why?" on the trip to the hospital. As we were driving up, I realized that we should be able to see the blue lighted window on the side of the hospital. Sure enough, we could. I worked hard to show Abigail (eventually successful, when she actually looked where I was pointing). She enjoyed pressing the elevator buttons. First thing I asked when we arrived, the answer: 21.3.
21.3? That's great, right? The nurse says that's much better than they were hoping for. They were thinking 23 at best, so 21.3 was a very pleasant surprise. It was also clear in Balen's behavior. He was more alert, more fidgety, eating better, and starting to get sick of laying there with no real stimuli.
Abigail reached through the hole to touch him and say hi. When she did, he really got active and started squirming. He seems to like the sound of her voice. Abigail then proceeded to color on the whiteboard, fly her pegasus around the room, ask for a band-aid from the nurse, ask for a snack, ask for a picture to color (three times, each time being told, "No, we're leaving soon!") eat a snack, ask why the marker isn't writing on the whiteboard anymore, ask Mommy if she should help pump the milk, and generally be Abigail. Michel pumped some more milk to keep up with Balen's feeding schedule, and we packed up and went outside. Once out there, I showed Michel the Blue Window, and took a few pics while they warmed up inside the Xterra.
So now, Abigail is asleep in bed, Michel is trying to get some sleep in a cot in the hospital, I am here writing this, and I just got off the phone with Michel with the latest test results, 18.8! and am ready to finally get some sleep. I just had to let you all know what's been going on.
Just keep praying. It works.
Some links:
Jaundice Hyperbilirubinemia (jump down to half way)
Kernicterus Webmd listing of common newborn problems
