Friday, June 19, 2009

To caffeinate or not to caffeinate

Quite a big outing for the kids today. We headed back to OSF hospital for Adam's head ultrasound to check on his brain bleed. He was such a good boy to lay still for 15 minutes while the tech gooped up his head and took pictures. Of course his favorite orange pacifier always helps! Results will be sent to his pediatrician, Dr. Neese, which we will review at his appointment Friday. Glad that we were able to change Adam to Adam J Mollenhauer in their computer system instead of Adam A. OSF keeps track of twin A and twin B at birth but then it gets in their records as a middle initial so we get all their mail for Adam A and Sara B.

Also a milestone for Sara as we turned in her car bed and declared officially that she is suited for her big girl car seat!

We stopped by the NICU to visit with the nurses that were on duty. Dr. Makwon happened to be there, as well, so it was nice to see the doctor that was assigned to both kids during their first 29 days of life. Everyone commented on how big they had gotten and how healthy they looked. Funny that when we go out in public, they draw attention everywhere they go not only for being twins but for being so small! One woman asked me yesterday if they were mine because she thought they were just born and my belly is completely gone. So everyone else is amazed at how small they are and those of us who know them well are amazed at how big they are!

Last on the list was to head up to the sleep lab and have their monitors downloaded. Sara's was full again from all the false alarms she had before switching her to the belt and then a few recently when it was applied too loose after bath time. We thought since we were there we might as well have Adam's analyzed since he had set it off 4-5 times since being home. I received a phone call from the nurse at Dr. Neese's office late in the afternoon saying Adam's results had already been analyzed and they wanted to start him back on caffeine. I asked why that was necessary when he only had a few alarms in 2 1/2 weeks. She responded that he had a significant number of alarms. This didn't make sense to me and the fact that she woke me from a nap didn't help in my processing the information, either. I'm sure the nurse seemed a little irritated with my questioning. She finally said the doctor who analyzed it said there were 15 alarms, 10 were for significant apnea (lack of breathing). This didn't help my confusion. We didn't hear the alarm go off 15 times. Do I have a faulty machine? Turns out that the monitor is set for a 20 second delay. However, 15 seconds is considered significant so the additional episodes were self-corrected before the alarm went off to notify us. Apparently we need a doctor's order to have the time reduced. Who was the doctor that analyzed this - can I speak with him? Dr. Javed interpreted the download and she gave me his number. I am familiar with him from a few times he saw the twins in the NICU. He was very helpful in showing us the x-rays of Adam's brain and more thoroughly explaining his brain bleed so I was happy it was a doctor I was comfortable and familiar with. I dialed the number, expecting to get his office, and instead heard "Hello?" Turns out it was his cell phone number! What a great open door opportunity to talk with him directly! His main concern in talking to the pediatrician's office was to find out if anything else was going on with Adam since being released from the hospital - was he fighting illness, how was he eating, any other issues, etc. - because he just sees a piece of paper with the monitor levels. I talked through Adam's progress with him and said there were no issues and he was doing so much better at home with his feedings. It is unusual for a baby at 39 weeks to go back on caffeine but some babies need it until 44 weeks. He asked if Adam was having any reflux and I said yes. That could possibly be what is causing him to "hiccup" with his breathing if the fluid coming up gets into his airway and pauses his breathing before he can clear it. Dr. Neese did say at our first appointment that if Adam's reflux caused more apneas we would step up treating it with something more than thickening his feeds with rice. I'm all for giving Adam what he needs. But caffeine is a brain stimulant. If the apnea is occurring because of the reflux, I feel like we aren't treating the problem and it will just continue. I called Dr. Neese's office back to get their thoughts on this. Unfortunately, he was out of the office at his daughter's wedding and the nurse would have to contact Dr. McCarthy who had left for the day. She suggested adding a 3rd teaspoon of rice to Adam's bottles to thicken them more and discuss further options with Dr. Neese next week. Since he was self-correcting the episodes, we can hold off on the caffeine temporarily. We have elevated the crib mattress a little again and increased the rice. I also am holding off nursing him until we know more because straight breast milk is the thinnest feeding option he can get. We will call Dr. Neese Monday to touch base on next steps and probably get another download mid week to see if these interim steps have made a difference.

I'm sure apnea even if full-term babies is not uncommon. Adults have issues with it as well. But it does make my pulse beat a little faster to know that while I am doing dishes, fixing dinner, putting in a load of son could be laying in his crib not breathing. Makes me thankful that we have a monitor that will notify us if it does last more than 20 seconds. But still. All part of our "normal." And most of the time when people ask in public "But they're fine now, right?" I just respond with "Yep!"

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