Toaster head is one of the very educational vocabulary words I learned in the middle of the night while awake with a baby. There were many things that would keep me awake at night. One of them being my very squeaky baby!
I learned in the middle of the night that preemie's are very noisy sleepers and Ella was no exception. Some of the readings I did explained that "A full term baby spends about 15-20 minutes at a time in deep sleep and 65-70 minutes in light sleep. A young preemie may spend only 2-5 minutes in deep sleep before going back into light sleep." Well this explained her very squeaky sleep patterns that were keeping me wide awake at night. I did sleep but found that I did not really sleep until after Ella's 2:30 AM feeding. Jeff did the 5:30 feeding and I would get several hours in a row with his help. I am definitely someone who does better on no sleep versus a short sleep!
While wide awake I would often find myself on the Internet looking for answers to questions about preemie babies. One thing that kept me up at night was this little head.
I never really noticed the shape of Ella's head while she was in the NICU. Looking back at pictures it was fairly round at the beginning but definitely changed to look more narrow and long by the time we left. I just didn't notice until we got home. My mom made a comment to make sure that I was having Ella sleep on both sides of her head to keep her head round or she may need a helmet. I took notice that Ella always put her head all the way to one side when she slept and she slept most of the time. I looked this up and found that preemie's can often get a misshaped head because their neck muscles are not strong enough to support laying on the back of their head. They called this "toaster head". One thing that didn't add up though was it also said that this issue is seen more with preemie's who spent an extended amount of time on CPAP or ventilators. Ella spent no time on either. My mom ended up ordering her a special "halo" pillow that she could lay her head in that would help keep it up.
I started to get a bit nervous about it. I asked the nurse and doctor on our return trip to the hospital.....they looked at me like I was crazy! The home health nurse was a bit perplexed and told me to call the pediatricians office. The nurse there said to maybe use the car seat head supports at times to help. No one seemed worried so I didn't worry.
Ella turned two months old! She had made it to her due date and weighed in at 6 pounds, 9 ounces and was doing really well. Then Dr. Tosi says......"Did they say anything at OSF about her head? Will you be going back there any time soon for anything?" I am not looking at him puzzled. I explained I had been worried about her head but everyone else didn't seem worried.
Well he was worried and sent us that day for an x-ray. I was so happy Jeff took the day off to go to her appointment as it turned into a long day. We heard back from the pediatricians office and the radiologist said it appeared that the head sutures were closing prematurely and he recommended a CT scan to verify. Dr. Tosi was not going to mess around and got us an appointment to see a neurologist in the next few weeks. We trusted him and we waited to find out what this exactly meant.
I spent much time on the Internet reading about the possibilities from helmets to surgeries until I couldn't read any more. I had to wait for the answers and focus on the positives. The positive included that God had taken amazing care of Ella in her first two months. She had made it to her due date and had touched the lives of many.
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