There are food critics and movie critics. Sometimes I think Izzy's teaching us to be medical field critics. There was a time in my life when I knew absolutely nothing about the medical field. Those days are long gone as terms like tachypnic, diaphoretic, PO, and FIO2 have become part of my daily conversations. There's a nurse-in-training working with our nurse here who came in to get vitals and I showed her how to use the monitor to start the blood pressure cuff. I really thought as a stay at home mom I wouldn't feel intellectual stimulation and the only things I'd be able to talk about would be poop, spit-up, breast feeding, and sleep schedules. Thanks to Izzy, my life will never be that dull. :)
Now, for the info you've been waiting for. The 10 days Izzy was at home after being released from Edward were awesome. When she first came home she wasn't tolerating her full volume and she also needed a little extra oxygen. Within the fist week we weaned her back to her baseline of 0.2 liters and she was doing great. We were able to increase her volume with each feeding and she was eating everything by mouth during the day. This was new for us. We had at least four days where there was nothing left at the end of her feedings to put in through the NG tube. She was taking her full bottle by mouth and looking good doing it. She was coordinating her sucking, swallowing, and breathing beautifully. The speech and physical therapists were both very impressed. So, as you know we attempted to let her keep her NG tube out.
Unfortunately, on Tuesday, she gradually went downhill. Feedings started becoming longer and longer and she looked less and less coordinated. By her first nighttime feeding she wasn't able to eat more than an ounce. I noticed she was breathing very fast. Her respirations were at 80 breaths per minute, which is much higher than the average 40-60 breaths per minute she should be breathing. In the NICU, the nurses won't feed babies unless they're under 60 because there is fear of aspiration. They told us it's like trying to chug a bunch of water down after you're exhausted from running a race and breathing very fast. Any of us would throw up with that scenario and that's what happens to Izzy, too.
Because it was such a drastic change, we reinserted the NG tube and came to see Dr. Andrews in the morning. She decided to keep Izzy overnight for observation. After they increased her oxygen, she started finishing her bottles again and looking much better. Her work of breathing is better and she's smiling, which is always great to see.
So far we give our new hospital and medical team a 5 out of 5 star rating. The nurses, doctors, residents, check-in staff, and even security guards have all been wonderful. The best part about being here is there is a huge team of doctors looking at her an collaborating. It's not just a world renowned pulmonologist, but also all of her residents. The pulmonology team is working with Dr. Andrews (the neonatologist). There is also a speech therapist and a dietician involved. They're all collaborating to make the best plan for Izzy.
Here's what I know so far. The dietician thinks she should be on 120 cal/kilo diet instead of 108 cal/kilo so she recommended increasing her volume. She said we really need to grow her lungs and she'll need the higher calories/day in order to do that. She said Izzy should get chubby before she gets long so we should expect that and not worry. (Jeremy I'm talking to you who thinks Sophie may need a diet already.) Dr. Andrews and the pulmonologist, Dr. Lester, are worried that the diuretics are dehydrating Izzy so they're going to have us add a water flush between her feedings to help keep her hydrated. We'll go home on 0.5 liters of oxygen and turn it up to 1 liter during feeds. They're still deciding whether to add some additional medications or not. It looks like we'll be here one more day so they can solidify all the parts of the plan and send us home with just the right amount of breathing support for her to be able to bottle feed.
Although coming to the hospital may seem to you like a step back it's actually a huge step forward. Over the last week Izzy has shown us she can eat all of her feedings by mouth. We never knew that before. And, now that we're downtown, all of her care will be coordinated and overseen by Dr. Andrews. We had a pulmonologist before, but he was working in isolation as were all the other key players.
So, here's my big review on the medical profession: It's just like education! Collaboration is the key. The best schools operate as a professional learning community in which the classroom teacher, reading specialist, math specialist, speech therapist, guidance counselor, special education teachers, and administrators, etc. collaborate together to make the best plan for each student who is struggling. In my mind the pediatrician is like the classroom teacher, able to take care of most of the kids with great results. Izzy is like the student who is struggling with the typical amount of support. She needs more. More intervention, more support to meet her potential. She needs time, extra time to grow and catch up. Before coming here it felt like she had a different teacher for each subject and, since she was struggling in everything, they were all telling us what we should do to help her. Each teacher had a different opinion based on their background and the only way they were aware of each other was when I told them what the other said. No one was collaborating. So, we, the parents, were left in charge of deciding who to listen to and deducting what the real problems were based on all the opinions we heard. That is an extremely overwhelming and stressful burden to carry.
Here, it's different. The docs are communicating with each other in real time, before sending us home, and they're setting a collaborative plan for where we're headed next. It feels like it did in the NICU and it's a huge load of stress and worry off of our shoulders. Thank goodness for Dr. Andrews and thank goodness we were able to keep looking to find great care for Izzy yet again. I am really looking forward to watching her grow over the next few months and seeing her wow us with her progress. We'll keep you posted!