FAITH / by Micaela

I wanted to do a post thanking all of the incredible nurses that helped take care of Lula, and I will do so at another time, but right now I want to tell you about Faith and her mom Nicky.

Nicky was the last nurse we were assigned.  She was a day nurse who was sent to us after a series of decidedly lackluster day nurses; women who probably wanted a job where they could read Us Weekly between resetting machines.  After the third nurse bailed on once she realized that being with Lula was 10 hours of nonstop action I railed the nursing agency; you had better send me someone A M A Z I N G or I was going to pull all of Lula's nursing and go to another agency.

The first day that Nicky arrived I was in a royally foul mood.  I had spent a stressful morning at the hospital with Lula getting yet another EEG and wanted a few minutes to myself before meeting the new nurse, but Nicky arrived early.  I was overwhelmed and cranky and I walked in and barked at her to leave and come back in 20 minutes.  I think most people probably never would have come back but Nicky did.

Thank God she did, because I am not exaggerating when I say that Nicky is Florence Nightingale meets Mary Poppins.  First of all Nicky has 6 kids of her own. SIX kids. The oldest is 21 and the youngest is 5 months old.  This woman knows a thing or two about kids. She connected immediately with Lula, which was not easy for many people.  She was warm and sweet.  She never put Lula down and constantly massaged her feet and hands. She spoke to her in endlessly gentle tones.  She was also fantastic with Roan.  At the end of the first day she said to me, "I know it must be so hard to take care of a sick child all the time so if you ever need a break you can call me any time and I will come and watch both of the kids for you for free".  I started sobbing. 

Last week I got a text from Nicky that her baby girl Faith was being admitted to the hospital.  Over the past couple of weeks Faith had stopped making eye contact and tracking and was making some odd involuntary movements.  Nicky started looking online for the symptoms and up popped infantile spasms. It turns out, of all the things in the world, that Faith started having infantile spasms, the same seizure episodes that Lula had. They are difficult even for doctors to pick up on but because the spasms had been so much on Nicky's radar with Lula she realized what was happening immediately and started hunting down neurologists.

Despite the fact that her 5 month old was having these sudden episodes she couldn't get a neurology appointment anywhere until mid January, which, if you know Nicky at all, wasn't going to cut it.  She managed to get Faith admitted to Beth Israel for a video EEG two days before Christmas and has been there ever since.   I went to visit them and Nicky was beating herself up over not picking up on the seizures sooner.  She only cared about not being at home for Christmas because of her family who clearly missed them both terribly.  

Faith is already responding well to the meds (the same as Lula, ACTH) but I know the next month or two are going to be hellish for Nicky.  The meds will make Faith blow up like a puffer fish and they will mess with her blood pressure and immune system, making her vulnerable to every germ and virus right in the middle of cold season.  But she has such a good chance of recovering fully from the spasms so it will be worth it. 

On my last visit Nicky said, "I knew there was a reason that I was sent to Lula but I just didn't know it until now" and I completely agree.  My pragmatic brain does not know what to make of this, but she is a guardian of sorts.  Faith is even more proof of how much purpose Lula's brief life had in this world. 

Faith - such a pretty girl.  I might add that the EEG team at Beth Israel does a much tidier gauze helmet than Lula had at Cornell.