Sunday, January 26, 2014

Baby steps in a new shoe size

Last week we were on the 6th floor and then moved back up to the 7th, thank God. Now we are in a smaller, darker (less sunlight), temperature hot room.  During this week's meeting we let them know that we do feel that the front room is better for Maia's healing and growth. She runs hot, like me, just about every day, rain or shine I have been to Maia's temporary home in shorts and t-shirt. It is hard to see her laying there all sweaty, hands and feet just wet with sweat. We did discuss the cons in the room she is in and the pros of being in her old room. I had concerns about the venting in her room and I feel that Dr. Patrick took it the wrong way. My concern has always been for Maia. In her old room when I sat in the chair closest to the sink, I would be in the vent's path, and on a couple occasions, myself and nurse Janet's allergies just went crazy. My concern was if it is causing myself and Janet to start sneezing, coughing, and have runny noses and eyes, what could it be doing to Maia? Have the vents been checked, is there a filter, when is that last time it was cleaned? While being in uncharted territory regarding Maia's recovery and prognosis, I was thinking out of the box on what the possible causes could be to some of her unexplained conditions, like the reddening of her stomach, and some fevers. Now that Maia has been away from that room, she has seemed more sweaty and has had two fevers since the move. We think she may have been accustomed to that vent's breeze and may have actually benefited from it. Nurse Marie also mentioned that Maia's old room might be better because the window gave Maia a sense of day and night, since the room had a lot of natural light. So we're hoping to get that room back since it's where Maia's been the longest and it's what she's used to.

Tuesday the 28th,  UCSF cardiologists and other specialists from around the country will be discussing Maia's MRI results from the pictures of  her heart and chest, to determine when the best time for her next surgery, the Glenn (or Hemi-Fontan) procedure may be performed. We are so thankful that Maia has made it this far, after what we call being counted out so many times. In less then a week Maia will be 5 months old, her journey has been a second by second fight to be alive, to breathe, to be able to grow, to know that her name is Maia, Might Maia. Now almost 12 lbs, we continue to take baby steps in a new shoe size. We are hoping that they come back with positive results. Maia has been through so so much. Think positive always, but we do not want to get our hopes up to high. We're praying and hoping that the results from the meeting come back with them considering or even thinking to set a date for the 2nd heart surgery the Glenn.

With the first surgery being the most critical of the 3 surgeries, we are glad it's over and done with. Maia's kidney failure is why the recovery has been so challenging. It's why we're currently the family with the longest stay to date in the PCICU (Pediatric Cardiac Intensive Care Unit). The 2nd surgery, the Glenn, is not as complex or risky. Her body temperature is not dropped, her heart is not stopped, and it is not as long of a surgery. Writing this does not sound too severe, but all that was done to a 4 day old baby, baby Maia. If we do get a thumbs up for the Glenn, whether it is 2, 3 or 4 months out, it is that much closer to Maia's homecoming. We'll be able hold her, without wires and tubes in and out of her body. A time for her scars to heal, a time for her to see what her real home looks like, the walls, the ceiling, her room. We do not care about the drive back and forth everyday, as I would drive a million miles for Maia and back, if need be.

Today 1/26/2014 we're still in the hot room in the back. We were told we will be moving to the room that Maia is most comfortable in, so she can continue her healing and recovery. We're so happy that she won't have to endure having excess sweat on her little body, as that must be so annoying for her, it would be for anyone. Today was great. Maia was smiling and laughing her silent laugh, as she does not make any sounds yet. No crying out loud, no noises from her little mouth. We do see her silent cry, but it is just like Marcus when he was Maia's age, a 5 second cry is all they do. Rizza and I spent all day with Maia today, when Maia fell asleep, we took a walk and went exploring for a place to eat lunch. We ended up at a Thai restaurant and it was good, impressive. Walked off the lunch as it was pretty much a slight uphill walk all the way back. Came back to a still sleeping baby, got on our smart phone and iPad and hung out till she woke up. Spent the next couple hours with her playing, making faces, kissing her, and talking to her till it was time to leave. The hours go by so fast. We want to spend more and more time with her, but we know we have a big little boy at home, who equally needs are attention.

Family pic
yummy fingers
Big Brother Marcus n Maia

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