Post a Comment On: Micro Preemie Twins: The Story of H & E

[Image]Look at this CUTE picture of both girls smiling at their Nana! Poor Holly has a rash on her face. She seems to be getting more and more allergic to the tape that we use to hold her O2 cannula in place. Hydrocortizone works to clear it up, but it comes back as soon as we put the tape back on:( We would welcome any suggestions on getting that silly cannula to stay in place without using the "Tender" Grips.

Well, it's been over a week since my last post, and what a week it's been. For starters, we had an appointment with the pediatrician, Dr. Judge, on Wednesday. Holland weighed in at 8 pounds 13 ounces, and Eden at 9 pounds 1 ounce. Good news on the weight gain! Unfortunately, it kinda went downhill from there. We left the doctor's office and went straight to the hospital to check in for Eden's sleep study. Just as we suspected, Eden made it clear right away that she was not ready to come off her oxygen. She dropped her oxygen saturation into the 60's before they figured out that the equipment was, in fact, reading correctly. She also turned a very unattractive shade of gray. After that happened, mommy and daddy were ready to leave and go home to bed, but the doctor on call insisted that we stay and do the study on oxygen. We really didn't get the point, but we did not want to be uncooperative and go against the doctor's recommendation, so we stayed. Eden slept in an oxygen hood at 30% oxygen. We thought it would have made a lot more sense to keep her on the same oxygen system she is on at home (1/4 liter cannula). At least then we could be sure of how well she does on that at night when she is sleeping. On the bright side, Eden did great, slept the whole time, and did not have any apnea or bradycardia episodes (we knew she wouldn't).

So, after a night completely void of sleep, we had an impromptu appointment with the neurologist for Eden. Over the past couple of weeks we have noticed her doing this weird head and arm twitch. It is very mild, and lasts only a few seconds, but she does it at least a couple of times a day. When we mentioned it to the pediatrician, he referred us to a pediatric neurologist. So we got to the appointment Thursday morning and they hooked Eden up to an EEG for three hours, during which she only did the weird twitching thing for 6 seconds. Based on my description of the events, particularly as sterotypic and rhythmic, the doctor said he is 90% sure that she is having seizures. He seemed to want to start her on anti-seizure medication (Tripletal), but I am not completely comfortable doing so. I would not be against medication if we were certain they are seizures, they were harmful in some way, they were making her uncomfortable, and it was the only option, but we really don't have clear evidence that any of this is true. I'd also like more information to rule out possible causes, like maybe related to the nutritional supplements that she is on and/or possible difficulties with the oxygen at home??? I'm afraid that the side effects of the medication might lead to a worse outcome than just leaving things alone. I am VERY afraid to make the wrong decision, but my "maternal intuition" is telling me that she is doing fine and I should just wait to see if this will resolve on it's own.

On a positive note, on Friday Holland had her last appointment with Dr. Dass, the retinal specialist who did her ROP surgery. He says that her retinas look nearly perfect, and he does not anticipate any lasting difficulties as a result of the ROP. Holland is now the poster child for ROP surgery! Dr. Dass says that if she had been born just 15 years ago, she would have been blind in both eyes (like Stevie Wonder, who was also a preemie). We are very happy not to have to go to any more appts with Dr. Dass, but it was a great experience having him as a doctor. He is such an intelligent, patient, and compassinate person, and he was so gentle with the babies. When you are going through a stressful and difficult experience, it makes such a difference to have great doctors!

Just before our appointment with Dr. Dass we stopped in for a great visit at the NICU. We finally got to see Ruthann and Eileen! We kept missing them at previous visits. They were very happy to see how much the girls have grown and changed in the past two months:) It was also nice on Wednesday night to be able to see some of the night shift people who hadn't seen the girls since they left the NICU.