I have lately been a bit negligent in posting.
Things have settled down a bit lately, and I am now able to devote a bit more time to blogging. Over the next few weeks I will pick up my posting and update everyone on how we are doing.
So far, the babies are doing well. Both are at home. Katherine is fine and doing all the things a baby should and is now over 9 pounds. Jocelyn is just over 7 pounds and is being fed through an NG tube (tube in her nose). Other than that, she is not on any drugs. We have appointments with her doctor every week, just to monitor.
She had a bit of a problem last month in that she was not gaining weight. It was my fault. There are two main things going on with her. Babies need to gain weight, but we also want to get her off her feeding tube. She is on the tube because she is unable to get enough food to gain weight through a bottle, as she has not had the practice. So we were trying to do both and focusing on getting her off the tube. Over 4 days in October, we fed her bottle only, and made great strides. She was up to almost a 60 ml each feeding. Unfortunately, she was not able to keep this up the number of times necessary to gain weight and she lost ½ a pound in a week. At this point we had two babies, genetically the same but one at 6 pounds and one at 9 pounds. The hospital gave us a machine to regulate the formula. I swore I would never use this machine, as I saw it as a symbol of our failure to get her off the tube. It was at this point that I had to reevaluate and give up trying to do two things at once. We barely try to feed her with the bottle and the machine has ensured that she gets what she needs and she is up over seven pounds now.
We still do not know what, if anything, is wrong with her. We have an MRI at the end of the month and that may tell us something, or it may not. She has been calming down, has been less upset and she is often alert, looking around and responding to noises and objects. However, her head size is near the bottom of the percentile, so that is not good.
I think the waiting to know is the hardest.
Next post I will talk a bit about how this affects the parents.