Elanor was released from BI on Thursday afternoon. She saw her pediatrician on Friday, and was pronounced healthy. At the time, her skin had some light mottling, but as this is a common condition among newborns who had traumatic births (Elanor’s cord was tightly around her neck, etc)and it was very faint, no one was worried. On Saturday she seemed fine, if a little disinterested in eating…our pediatrician had said that newborns who had spent time in the NICU (as Elanor had) often need a little time to get eating and we should just monitor her intake (as I’m pumping and then we’re bottle feeding, this was actually pretty easy to document in a spreadsheet). Over the course of Saturday into Sunday she became more lethargic, and on Sunday we were basically force feeding her and her mottling had spread up her torso and to her neck. Looking back, it’s much easier to realize that she was getting weaker, but as she was still peeing and pooping and had no fever (which were the warning signs we’d been told to look for) we didn’t realize what was really going on.
Sunday night into Monday was when her condition really began to deteriorate. She stopped eating and lost her suck reflex. Crystal called the pediatrician around 3am on Monday, and they followed her condition over a few hours and advised us to take her to the pediatrician in the morning rather than take her to the Emergency Room. We called the pediatrician first thing in the AM and saw her around 9:30. Luckily our pediatrician used to be a pediatric ER doctor and advised us to go the Emergency Room right away.
We arrived at MGH around 10/10:15 and went to the ER. We were taken back to Pediatric ER where they immediately tried to get IV’s into her without luck. She was moved to Acute Emergency and doctors from various departments worked very hard to get her stable enough to move up to Pediatric Intensive Care. Her condition was critical and if we had waited even one more day it is likely Elanor would have died–she was close to death all of Monday.
They believe she has an infection, but we are not sure what as of yet. She is on five different antibiotics and the PICU team is working closely with Infectious Diseases to figure out what she has and what the best course of treatment would be.
We are extremely lucky that MGH has such a great PICU team. Elanor began to get better…her skin mottling (which in her case turned out to be a sign that her heart wasn’t pumping effectively) disappeared once they put her on some heart medication and she turned a healthy pink again, and her condition steadily improved on Monday night into Tuesday.
On Tuesday Elanor was taken off both heart medications she was on as she was able to maintain her blood pressure on her own. Her ventilator was also turned down to the point where she was breathing independently with only some help from the machine to help it not feel as though she were breathing through a straw. Her hemocrit levels were low (they help you clot, as we were told) and she received a second blood transfusion of red blood cells (the first was on Monday or Monday into Tuesday). They also confirmed on Tuesday that she had no bleeding in her head, which is important, and that her heart function was much improved. She continued to be on 5 antibiotics, as well as some painkillers and sedation to help her be comfortable.
The most important thing though, is that on Tuesday the head of the PICU was willing to say that she IS going to live and that it’s a matter of her getting a course of antibiotics and improving. She will probably be in the hospital for a minimum of ten days and possibly as many as 21 or so.
Crystal and Ravi have been by her side almost continuously. We were with her in the Emergency Room and although we entered a new circle of hell watching them do some incredibly scary things to our precious Turtle we did not leave her until we were forcibly separated for a while when she first entered the PICU. Elanor is in a room with a couch that turns into a twin bed and we also have a “Parent Room” with a twin bed. At almost all times one of us is with Elanor in her room and the other is either also in the room in a chair or in the second parent room. We are eating and sleeping as best we can, and Crystal is pumping milk for Elanor, which she’ll be able to have once she’s off the ventilator.
While we are not religious, if you are, please do send prayers or good thoughts Elanor’s way.