Amazing how time goes by

Some thoughts from daddy Gordon 

At 4 days old and then at 4 months old

Time sometimes feels like it goes by like the wind that blows through San Francisco and sometimes it feels like mud. It’s almost 4 months that Maia has been in the hospital, her temporary home, 4 months since my wife pushed out our baby girl. I think back and remember it like it was just the other night. Driving to UCSF in the slow lane and praying that the bumps in the road do not irritate or aggravate Rizza. When we had Marcus, every little rock in the road caused her pain. When Maia decided to start looking at life from the outside in and not the inside out, our journey began. She came out with her amniotic sac intact. To me it looked like one of those National Geographic Documentaries when a gazelle is born. She came sliding out and all within in one motion, the Drs and nurses popped open the sac. She let out a cry and they handed her off to the Dr., briskly taking her to the room across the hall. I continued to comfort my exhausted, but vibrant wife and making sure she was good. At this time it was just us in the cold operating room. Not knowing the rules and not knowing what was going on as I kept looking across the hall and asking Rizza should I go look. Finally I went and looked through the 2x2 safety window. All I could see was the back of some scrubbed gowns, with gloves and hair nets, all huddled around shoulder to shoulder.

Here we are now, and on December 29^th it will be 4 months that the corner of our room has remained vacant. Being the strongest one, “the man of the room,” I keep it clean and move things around but we know that a filled crib is missing. Since my old work let me go, I have been at home watching movies like The Great Escape, and Journey to the Center of the Earth, and I thought to myself my favorite movies have always been movies that have great journeys in them. We are on the biggest journey of our lives, it’s no Mount Everest, it’s LIFE. Maia’s life… During Thanksgiving when Marcus and I both had a cold and we did not go see Maia, as we knew it could be the death of her. So after three days of being sick and two days of recovery, and making sure no lingering symptoms were around we went to Maia’s temporary home.  Those were some long days, as everyday looking into her eyes, smelling her hair, and kissing her were put to a halt. But I look at it as those are seconds in a fraction of the life that we plan to spend with her. 

Maia has overcome so so much. She has been under anesthesia, under the knife, and has more stiches than myself or anyone I know.  We’re told by the Drs at UCSF, that with her two conditions, HLHS and kidney failure, she is the only living baby in the nation, the only baby in the world that has survived. Thinking back on Labor Day when she had the 1^st surgery and seeing her face for the 1^st time with no breathing tube stuck down her throat was a blessing and reward, Rizza does have that picture as her screen saver on her phone so I do see it every day. The tape job that the nurses have had to do to keep the breathing tube in place, I called the Hannibal Lector mask and as Christmas came near, we called it the Santa beard. On Friday the 20^th the UCSF Drs took out that breathing tube, basically relocated it and it’s now a trach tube in her throat area so we can now see her full face, her cheeks, her lips and her nose....  During the surgeries, the removal of the breathing tube and replacement of the pd catheter, I was at home catching up on the little things in life, laundry, sleep, and quiet time. During this time Rizza and Marcus were out Christmas shopping and taking Santa pics. The whole time I was in suspense, how did the surgery go, did she live through it, and thinking of the little girl in Oakland that is brain dead after what should’ve been a simple tonsillectomy. I kept busy, checking the cars’ tire pressure, the oil, and making sure the cars are ready to make the daily round trip and ready for the weekends ahead of us and noticed I had 3 missed calls from a 415 number but continued on getting things done. Rizza and Marcus got home and I listened to the stories of traffic and how they got our “front parking mojo” back during the holiday shopping time (for a period of time, more than a year or so, we almost always got front row parking anywhere we went).  I listened to the story of Marcus seeing his cousins, Santa and making Po Bear Mead (Po short for police).  Waiting for Rizza to get to the story about the surgery, about how Maia did and is doing. Being we are both positive and calm and know we will talk about it sooner or later, and know if something went wrong then we would already be talking and some things we need to talk about before we talk to Marcus about them.

We have been working with Marcus and making sure we keep his emotions and feelings a top concern and that he is healthy both physically and mentally, as this is his journey too. Marcus has been doing great. We did go through some difficult times. He did not want to go to the hospital, did not acknowledge Maia and asking us “why do you go every day?” At one time it felt like what about “me”...do I exist to my mom, dad and nino?  Those were during the times I went back to working full time (refer to 2 months old story) and we thought we were actually paying attention to him and keeping all that in mind. After a daddy and Marcus day at Dave and Busters, and making sure more time is spent with Marcus, he is becoming a big brother. Now he wants to go every day, kisses her, rubs his favorite spot on her belly, talks and sings, shows Maia that her big brother, Kuya Marcus is always will be there for her.  It warms my heart and makes me so proud to see him become a big boy a big brother.

The meetings with the UCSF Drs and unit staff have been up and down with emotions, since it has been a different Dr at each meeting, explaining and educating, from different points of views.  While some Drs are straight to the point, some are pessimistic, some are statistic and fact driven, but they do all care. We have had death explained in many ways to us, verbally and non-verbally, discussions about the quality of life, the telltale signs of suffering, what we see and feel. We do understand that they do need to make it clear, remind us, and keep us informed that today or tomorrow could be Maia’s last day. We do like said to us in a way that is straight to the point with no beating around the bush. The meeting before this last one had me down. For those who know me and those that have kept up with the blog, know that we are positive all the time. I looked at it later and I think I was just having a bad day, I think I am allowed at least one. This week’s meeting, Rizza and I were kind of dreading it just because we know that our next meeting would be after Christmas and that we wanted no bad news to be reported about. It went better than expected which I do not put expectations on things, as we do live day by day, preparing for the best and preparing for the worst.  We did find out that the breathing tube will be removed and the pd tube will be replaced. The surgeries went as expected and Saturday when we went to see her she even opened her eyes, which in the past after any surgery, it took her a few days to recover. Being she has a “high” tolerance for pain, less pain meds are needed and that may be partly why she woke up for us.  Well she looked at us and her eye contact is burned into my heart, looking at mommy, brother, nino and me and just acknowledging “I know you are there and I love you” in her eyes.

This is all part of the journey we are on. I see Maia, I listen to her heart, I look into her eyes, look at her face, her body, her belly, her feet, her hands, I smell her, feel her skin temperature. We know the Drs are only reminding us Maia is our sick little girl and we know every day is a blessing, a miracle. Well she is not suffering; her quality of life is good for what good is here… here at her temporary home.