The New "Normal"

   

      Cliff, Dani and Cordelia are all settling into their new "normal"-- a pace that is still "busy", but much nicer than the constant daily hustle of the hospital. While they do have a home health aid that comes to their room at the Ronald McDonald House 3 times a week and their own 3 times a week trips over to the hospital (which is right next door), they at least have sanctioned quiet at night (yay!) a much larger bed to sleep in (double yay!) and can do their laundry right across the hall. You really realize how much you appreciate the simple things after life has been anything but simple!

     AND, Cordelia has had several nights where she has slept 7-8 hours a night...I think that might get a hundred "yays!" Despite the fact that Cliff and Dani do have to change Cordelia's feed bag (she will be on a feeding tube to "catch up" on as much nutrition as possible until they come back to Buffalo- she's on it from 4 p.m. to 8 a.m. every day and Dani tries to feed her normally in between), and Dani gets up through the night to pump milk for Cordelia,  Cliff said if they were getting 3-4 hours of sleep while in the hospital, that they're getting 6-7 now.

   So their new normal includes nights with a baby that sometimes fusses for a binky or a sore tooth, and getting up for "feedings" (even though a bit untraditional right now!)..It's at least somewhat typical baby stuff...Not nights where they finally get the baby to sleep only to have a nurse come in to take a temperature or a blood draw!

    Of course their lives are anything but "normal" in many other regards, but again, they are so grateful for these simple things and these simple moments with their beautiful daughter who is returning to health.

    When my mother in law was visiting them last Friday she recalls Dani saying that "she couldn't wait to snuggle in bed with her daughter."

    They got to do that MANY times over this week...just hang out, side by side, sleepy and quiet.

   Cliff ran out to pick up a pizza a put gas in his car yesterday...and was hit up by a homeless man in Cincinnati for spare change! He said it was nice to be able to run out for food though, and then eat quietly with his wife.

   They are now allowed to eat their meals in their room together as well. Typically the Ronald McDonald House does not allow food in the room, but in certain situations (like theirs) where there are immune suppressant issues they make an exception.

   Another part of their new routine is the 9 medications they give to Cordelia every day. They include her anti rejection medication (which they are still trying to tweak to the lowest dose possible while being effective. They higher the dose, the more her immune system is suppressed), steroids (to help prevent rejection), a blood pressure medication (because one of the necessary meds causes high blood pressure), as well as a host of antibiotics and magnesium supplements.

    Apparently the first 60-90 days are the most crucial as far as fighting infection, so all of these are important right now in helping her to reach that benchmark infection free!

     As for prayer requests, Dani said to just continue to pray for Cordelia's protection because her immune system is compromised.

   On one final note, perhaps one of the best parts of the "new normal" is the regular smiles that Cordelia has for mom and dad!!!