No rest for the weary

Being premature has a way of following a kid lifelong. They are at increased risk for a number of things as they grow. So far we had done surprisingly well with Olivia. She had her RSV vaccines and never really had even sniffles through all of cold and flu season. We have had no respiratory issues or eye issues since being discharged from the NICU. She has been growing appropriately and took to breastfeeding like a champ. Since being discharged from the NICU she was noted to have a big head, not big compared to full term babies her age but big for her. Her head just seemed to be catching up quicker than the rest of her. Apparently it is not unheard of in preemies for one thing to catch up quicker than the other, ie weight quicker than length or HC, or length quicker than weight. Hers was her head. It wasn’t abnormally large so we were just waiting and watching. At her  9 mo WCC her pediatrician thought her anterior fontanelle seemed a little full. They asked me, I said it is no different than it always has been so we again went with the wait and watch. At that time she was between 40-50%tile for head circumference. Last Tuesday we took her in for an acute visit because she had developed thrush which was no big deal but the pediatrician on that day remeasured her head. In less than 3 weeks hear head had increased by 1.5 cm and jumped to between the 50-75%tile. Her weight and height remained less than 3^rd percentile this entire time. She was concerned enough to speak with our primary pediatrician and they decided it was probably time to scan her. The main concern being hydrocephalus. Olivia did have a small bleed when she was born but it would be unlikely for a bleed so tiny to obstruct so we were really unsure of what we might be dealing with.  Mind you less than 10 months ago we lost our son to a highly aggressive brain tumor so you can imagine where our minds went. Of course the doctor in me knew that Owen’s tumor has no genetic link and really has no play what so ever into anyone in our family having anything at all similar. However you lose one kid to a tumor and you automatically assume the worst whenever you are faced with symptoms in another child. I have to give our pediatrician props… she managed to schedule an MRI under sedation in less than 24 hours. I think they chose to skip the CT scan because they unfortunately were thinking the same way I was and certain tumors are seen better on MRI.  She had her MRI on Thursday and tolerated the sedation perfectly.  We had our read that evening and it showed benign enlargement of the subarachnoid space. We are lucky that there is nothing bad, no tumor, no significant hydrocephalus, no need to meet with a neurosurgeon. Basically she has extra fluid around the brain, not in it. All the research shows that they have big heads, most growth in the first year, but they tend to level out by age 2 and then grow into their big heads. It does not put her at any increased risk for learning development or delayed motor development.  It does however, put her at a somewhat increased risk for subdural hemorrhages with minimal or no trauma so it is something we will have to continue to monitor and be aware of but overall it is one of the best outcomes we could have hoped for. Now if things can just go smoothly for awhile.

On to the hearing issues. I had issues with the ENT we had initially seen so we were referred to an outside pediatric ENT, Dr. Shapiro, who is amazing and I would recommend to anyone in this area. He was agreeable that yes, there was fluid and yes, it could be causing her hearing loss so first step was to get rid of the fluid. She had tubes placed in June and did very well. While speaking with him he basically had her next few months laid out. Tubes, retest hearing, if she passes fantastic then we go on with life, if she fails then we go to CHOP and discuss cochlear implants. He said if she has no hearing what so ever and we get cochlear implants in by a year old she would have normal hearing and speech. Tubes done, we went back for a recheck on Tuesday.  She did not pass the simple screen then, but he said that may be because of the tubes themselves. We know she has some hearing as she now responds to her name and wakes up when her sisters are being crazy. However we are unsure if she has full hearing in both ears. We go back the end of August for a more detailed hearing test to check one last time. If she has some hearing in both ears we will sit tight and reevaluate as needed and see if things work themselves out or if we need to look into hearing aids in the future. If one ear shows no hearing at this time we will be sent to CHOP to be evaluated for a cochlear implant. So far I am feeling pretty optimistic that we will not need to go down the cochlear implant route.

Thus far our little fighter is doing her thing and doing it well. We will be rocking the big head look for awhile, but I think she can pull it off.