The ER

Thursday baby Bean was excessively sleepy.  He was extremely difficult to rouse.  In addition, he was not filling out at all and started to look gaunt.  My mother looked at him and thought he looked like an old man in skin that was too big for him.  I will paste in some of the things my husband and I wrote as it occurred throughout the blog.

Thursday, August 14

A Sleepy Baby
Bean started out quite eager to nurse the first few days, however, shortly after my milk came in he's been pretty sleepy. He's a little bit jaundiced, but not bad at all. The pediatrician thought it looked very minimal. So that is not the problem...

He does have a good latch and a strong suck, and he nurses through a letdown and for a few minutes afterwards. The problem is I have to wake him up to feed him most of the time. And he can be hard to rouse! I'm setting an alarm at night, because he doesn't reliably wake up. I've never encountered this problem before. Bean also does not root and act hungry like Matt and Missy did. So far I've tried diaper changes, tickling his spine and toes, and undressing him partially with mixed results. Anyone else gone through this? Ideas? Suggestions?

I plan on weighing him tonight. Keeping my fingers crossed that he's gained some weight...

I weighed him at the post office and was horrified by how much weight he'd lost.  He was making plenty of diapers, why was he losing weight???  I called the after hours pediatrician, midwife, and my father who is a doctor for advice.  In my heart I felt like something was really wrong...  He wasn't looking or acting like a newborn should and trying to get him to eat wasn't working.  

Jay wrote:

I called home as I was leaving the python user group. Fay's mom answered. Was there a tone in her voice that meant something was Not Good or is my memory shaded by what happened? She told me that Fay had weighed little Bean at the post office and he was down to 5 pounds 3, that she had been pretty distraught, that Mom and Dad had calmed her down a bit and she was taking a bath to clear her mind.

The pediatrician, and the midwife agreed that if he wouldn't eat from breast or bottle that evening then it was time to take him to the ER. So when I got back our neighbor Brian and I gave him a blessing, then we tossed the baby bag in the car that Fay had packed and headed up to the children's hospital downtown. I was pretty much retracing my steps; the user group meets at one of the research buildings at the U where one of the members works, in the same medical complex as the hospital.

We got to the ER around 10:20, and after navigating our way to the ER from pretty much the exact opposite side of the hospital where the signs told us was the emergency parking -- supposedly the ER actually has valet parking, so those were VERY poor directions -- we got to the ER where the triage nurse tested his oxygen, decided it looked a bit low, and sent us back to an exam room for tests. Virtually no waiting; I was very surprised.

In the exam room they put a bunch of sensors on his chest for heart rate and breathing.

Wait. Doctor came in, wearing a green shirt the color of the RN's uniforms but otherwise unremarkable. I thought doctors were supposed to wear white coats. Young, too. She told us what they were going to do to start, then left. She was patient explaining things to me in small words; I liked her.

Wait. Rectal thermometer. Didn't tell me the reading but if it had been high she probably would have said something.

Wait. Then they put an IV line in and drew blood from it several times for a battery of tests.

Wait. They weighed him (2.3 kg = 5 lb 1 oz) and put saline on the line to rehydrate him, along with some broad-spectrum antibiotics, just in case.

Wait. First blood results: low sodium, very high glucose. Nobody has seen this before; our doctor asked the endocrineologist, with no better results. Best they can come up with is that it's either (a) diabetes or another pancreatic problem, or (b) the results are whacky because of the dehydration. They want to re-test after the "lumbar puncture." I guess they think that sounds less scary than "spinal tap." They are right.

Wait. Spinal tap to test for meningitis. The nurses and doctor all told us how hard this was for parents to watch, since the kids hate hate hate being curled up so their spine is accessible, but the actual needle pain is no worse than a shot. I stayed to provide what moral support I could and in fact he appreciated having my finger to suck on. He actually fell asleep after the needle was inserted and while the fluid was collecting, slowly. I had to ask how to operate the sink to wash my hands; turns out it was foot-pedal operated, and there was a blanket covering the pedals.

Second round of blood drawing, for the sodium/glucose re-test.

Security guy comes in. "Is everyone okay?" We and our unseen companions across the partition say we are fine. Fay says sotto voce, "This is the emergency room. What does he think?"

Wait. Can we feed him now? Oh, the doctor was going to check on that, let me remind her. Yes, you can feed him. We're going to try to get him a bed in the neonatal unit so he won't be next to the kids with contagious diseases.

1:50 AM. Three hours plus into this. Not the night we had planned. I tell Fay that if it's any consolation, the hospital is one place you can be sure that no matter how bad your night is, you can be sure someone else's is worse. It's not any consolation.

I wrote a few days later:

I think the Lord has been watching over Bean and our family.

Originally I planned on weighing Bean on Friday as long as he was going through diapers and looked okay. Thursday morning I began to get concerned because he didn't look like he was filling out at all and he was too sleepy- but he was still making lots of diapers. I began praying for him. By evening I decided that he needed to be weighed right away. The pediatrician's office isn't open in the evening, so I took him to the post office and used the scale there to see his weight. My heart dropped into my shoes when I saw how much he'd lost. I took him home very upset. I made some calls to the pediatrician, my midwife, and my Dad. They were all very concerned, but didn't have quite the urgency I was feeling. Of course they couldn't see him over the phone either... My Dad and midwife both expressed their confidence that I'd know what to do though. The pediatrician advised bottle feeding him during the night and taking him into the office in the morning; unless I was really, really concerned, then take him to the hospital.

Jay was at his python meeting, so I waited until he got home. My Mom suggested getting a blessing, so when he arrived home he and a neighbor gave Bean and me a blessing. Right after the blessing I told Jay that we needed to go NOW to the (regional children's hospital) even though there are several hospitals closer. I just felt we needed to be there. So we packed up and left. All the way there I was hoping that it was a simple matter, but felt in my heart that there was something really wrong.

Jay already wrote about our experience in the ER, so I won't repeat it, but it was very good he went in that night. He would have been in much worse shape had we waited any longer. Also, it turns out that even if we had gone to another hospital, Bean would have been transfered to the (regional children's hospital). So just as well we hadn't wasted time.

I cannot recall ever being more sick with worry or feeling so helpless.  In the ER there were murmurs of diabetes.  During the lumbar puncture done to rule out meningitis, I stepped into the hall.  Jay stayed with Bean to offer what comfort he could.  I was a coward and just couldn't bear to watch.  Listening to little Bean cry and thinking about the ramifications to diabetes, I just broke down.  Would little Bean be all right in the end?  How, oh how, do you deal with diabetes in a newborn???