Wednesday, September 3, 2014

Happy Birthday to Our Newest Angel...

This post was created by both mom and dad over the past few days, in the middle of all the craziness, stress, and inconceivable moments.... 

~ Thoughts from Mom ~
Wednesday, August 27, 2014

This was the day of what would be our last family meeting. We had normally been meeting on Friday mornings, but since Friday was Maia's birthday, we decided to reschedule it. We knew it was going to be a busy day since it was also Marcus' first day of school... we now are the proud parents of a 1st grader!!! So after dropping him off at school, we headed straight to the hospital. Maia had a somewhat uneventful night and although she was relaxed and calm, her Dr. put her back on blood pressure medication, dopamine and epinephrine to help her maintain a higher blood pressure, which Maia seems to prefer. We were also hoping this would get more oxygenated blood to her kidneys, to get them to work more effectively and help her get rid of more fluid. For the past few days, her urine output had been slowly decreasing. They were unable to increase her diuretics due to her kidney levels being already elevated. They also added nitric oxide back to the mix to help open up the blood vessels in her lungs. Her sedation medication, dex, was decreased to give her some more awake time... something we didn't mind at all. Despite Maia being stable for the day, our family meeting reconfirmed what we had discussed at our last meeting. This week, the ICU attending was Dr. Sarah Tabbutt. She's always been very passionate with Maia's care and on that day, she mentioned that Maia was a completely different baby from when she last saw her about 3 weeks ago. She has gotten so much worse and we're all not sure exactly why. She told us that there were a few more minor things she'd like to try and check out regarding Maia's care... one of which was to put her back on the full dose of steroids. Of course this comes with no guarantee that something positive would come out of it, but for her own personal reasons, she wanted to make sure that if Maia wasn't going to survive, she wanted to know that she really did do everything for Maia. But just like all the other Drs on Maia's team, Dr. Sarah also wanted us to be prepared because Maia didn't look good and it was only a matter of time. 


 One thing Dr. Sarah did not want to happen, was for Maia to pass in the middle of the night, without us there. She said it has happened before and it's such a heartbreaking experience to see a baby take their last breath without the people that love them most around. She did not want that to happen to Maia. So she said if we want to have a more prepared setting, so that we could all be with her, they would accommodate us in any way they can... and we can do things our way. Or we could always continue the fight just as we've always done, and hope and pray that if anything happens, we would be there. She also discussed with us the palliative team, who was also present at the family meeting, regarding the transition to comfort care. Dr. Sarah had talked to me previously about them and said she's worked with them many times before and they are great with pain management situations, like with cancer patients. But she felt Maia's situation was different. She really didn't feel the need to transition or bring in any more people. She left it up to us to determine what we would like or need from the palliative care team. Dr. Sarah felt that in her entire life, Maia was taken care of by her 7 East family and they knew her best. She felt it was better that they continue Maia's care until the very end, because they've been there from the start and they knew how to best make Maia happy and comfortable... and we completely agreed. 

So Gordon and I went to lunch and talked it over. We both agreed that Maia has not looked good this past week and that it hurts us to see her so mad and unhappy. All she wants is to remove all the tubes, wires, and IVs connect to her. If she could do it herself, she would, and she's tried many times before. One thing I knew for sure, is that I wanted Maia to celebrate her 1st birthday with us. When Marissa was born, we said hello & goodbye all within the same day... in some weird way, I wanted the same thing for Maia, to be able to celebrate her birthday and "angelversary" on the same day. So when we got back to the hospital, we told Maia's nurse, Angela, that we were leaning towards comfort care but that we had a few questions as to how the process would be and what can we expect. 

Angela described the process as being pretty much customized for the best comfort level for Maia. Dr. Sarah added that in Maia's condition, it would be best to do everything quickly, so there's less chance of her going into cardiac arrest... we could not bear to see that happen, so that would be the plan. The only other thing that we requested was to be able to celebrate Maia's birthday. If everyone, all the Drs, nurses, and RTs, could help her make it to 2:45am, her official birthday, we would be happy. Of course, just like always, if Maia decides otherwise, we'll just go with the flow and let her lead the way. For the rest of the day, Maia was comfortable and happy, mainly because she was proned (on her tummy), her favorite position. Unfortunately, this made her face and chest extremely puffy from the swelling that was gradually starting to increase more and more... this also meant her urine output was also decreasing.

Maia's Birthday Eve ~ Thursday, August 28, 2014

Later that night, we sat in our room at home, talking about how we can improve our home life. Going back and forth to the hospital each day had taken a toll on things like our bedroom... it was a mess! We literally used it as a place to sleep and change our clothes. Then around 1:30am we received a phone call from Dr. Duncan Henry, the PCICU attending who was working the night shift. Maia was not responding well to a position change and had dropped her oxygen sats once again. They were having a hard time bringing them back up and wanted us to come down and be with Maia, in case something happened. Everyone was aware that Maia dying and that she could go at any time, so they wanted to make sure we were notified. We thanked Dr. Duncan and headed over to the hospital. 

The drive to UCSF brought us back to the time we drove to the hospital when I was in labor. It was also a Thursday early morning drive and we decided to take the exact same route! However, this time, we were both crying, we were both scared. We didn't know what was going to happen. When we arrived, both Gordon and I had settled ourselves down. We just wanted to see Maia. We got to her room and she was stable... which of course meant that she had calmed down, her numbers weren't great, but she was still alive. Her sats were in the 50's but she was relaxed and in prone position. I decided to stay with her, and Gordon went back home to get some sleep. As Maia slept comfortably, the only thing her nurse, Angie, was worried about was when it was time to change position again around 6:00am. At 6:30am she was flipped over and she once again was not happy. It took her awhile, but she eventually settled down. 

Later that night, I spent the night with Maia. I was prepared for her moments of desaturation along with a long sleepless night for me. To my surprise, Maia had such a calm and peaceful night. It was uneventful as she slept through the entire night. Her nurse that night was Katie, who was also prepared for anything. Around midnight, Katie asked me if I was ok with having her diuretics stopped. She hadn't peed in almost 2 days, so she thought the less fluid that Maia's body took in, might help reduce her swelling. When she checked to see if it was ok with the Dr. she was told not to do anything, especially if Maia was stable... he was told that Maia needed to make it to her birthday, at least til 2:45am, her true birthday. So since Maia was stable and doing fine, they wouldn't change anything. It was so quiet that several times I woke up in the middle of the night to the sound of falling birthday cards that hit the ground. The next morning, I woke up crying because everything had seemed too calm and peaceful... like it was a sign that Maia might be ready... ready to join her sister.

Maia's 1st Birthday, August 29, 2014

I got up around 6:00am. I changed into my Fight Your Heart Out shirt and freshened up before the craziness of the day started. We scheduled a Happy Birthday sing-a-long on Ustream to air around 10:00am, however, traffic was horrible that morning, making Gordon, Marcus, and my brother, all late to the hospital. Nurse Angela and I tried to set things up as much as we could before people started arriving. We moved around chairs and tables to help set up the camera and laptop that would air our birthday celebration. We also changed Maia into her birthday outfit... a pink and white tutu dress, with matching pink and white socks with flowers (a gift from Nurse Helen and her daughter Jackie). Marcus' gift, a pink flower headband, completed the look. I knew Maia would have IVs on her arms so I figured one of the easiest things to put on was something strapless. The body of the dress was was crocheted elastic, which made accommodating her swollen body much easier. It fit her perfectly! The night before, the staff had arranged it so that Maia was the only patient in the front area of the unit. We're glad they did because everyone slowly trickled in... and before we knew it, the front area of the unit was filled with with people waiting to celebrate. Hospital staff from different units and departments all came by to wish Maia a Happy Birthday, along with some of the nurses that were off that day. It was a good thing no other patients were in the front area with us because it did get loud and crowded. 

Although Maia had been weaned off her sedation meds so that she could be more awake for her birthday, she seemed tired. She was awake and alert whenever Marcus talked to her, but for the most part, she wasn't as active as she normally was. But she also wasn't mad like she usually was, she was nice and calm... which in some ways, confirmed to me that once again, she was ready, ready to be with her sister.

Those that couldn't stay for very long personally greeted Maia with both tears of joy and tears of sadness. It was an emotional sight to see, as many of Maia's nurses and Drs came by to wish her a Happy Birthday. We all knew she wasn't doing very well, so there were both tears of joy and tears of sadness, as we celebrated her first birthday.

The sing-a-long got started around 10:30am. We were joined by Oliver Jacobson, the musical therapist, who was gracious enought to accompany us in our Happy Birthday serenade to Maia. Afterwords, Marcus entertained us all with his renditions of "Counting Stars" and "Let It Go." 

We then gave Maia some birthday treats! We took her oral care sponge on a stick and dipped it into some whipped cream, then some cronut custard, then some chocolate... and she sucked the sponge dry each time! Marcus was so excited for Maia to try some sweets that he quickly gave her more! It was a beautiful sight.... Maia also got a pedicure from her ninas!

A few moments later, we were joined by one of Maia's uncle and godfather. My brother had flown out from New York and made it just in time to see Maia. He had previously done the same thing back when Marissa was born, but unfortunately, she passed away before his plane had landed. So we were all so happy he was able to be here for Maia's birthday celebration. 

As the party whined down, Dr. Sarah checked in with us to see if we were ready, if everyone we wanted to be present was there. So after a few minutes, we privately gathered everyone into Maia's room. Dr. Sarah, Angela, and Robin, her RT, made sure everything was ready. At this time, Gordon and I sat down on the couch and Maia was placed into my arms. She was extremely heavy and so swollen, it made me so sad to see her that way. She was normally so happy and vibrant, so to see her so still and barely moving, with her eyes closed, was very hard... just confirmation that we knew it was her time. Dr. Sarah first gave her some sedation meds, then took her off of her blood pressure meds. Next to go was the tape on her face... the tape that she tried to take off herself so many times. Then last to go was her breathing tube, the tube she hated so much. Her face was once again free. Dr. Sarah quietly left the room as we kissed her cheeks and told her how much we loved her. It was heartbreaking to have to say goodbye. But she was surrounded by so much love. It was almost as if she had fallen asleep in my arms. She didn't struggle, she didn't suffer... we couldn't let her, she didn't deserve it. She left us peacefully at 1:55pm. Dr. Sarah came in to let us know and quietly whispered her time of death to us, as only she was able to see it since they had turned off the monitor in Maia's room. She was now gone. Gone to be with God and her big sister, Marissa. 

Maia, you are loved... you are missed.

~ Thoughts from Dad ~

Happy Birthday to our newest angel 

Dad Gordon

4 weeks ago. 
Maia gave us all a scare on that day, Saturday August 2nd or was it a sign? (If you do not know what happened that day please go back and read my last post.)   Since that day I have listened to Maia's breath, her right lung, left lung, upper lung,
lower lung, on the side or from the back depending on how she is laying down. As the weeks went by there has been no real change in sound. At one time, Maia's lungs sounded like a faint sonar ping, sometimes when feeling her chest it felt like the same sticky feeling of having gum on the bottom of your shoe.

Maia received  X-rays every morning, they almost always looked like hazy headlights when they should just look see through and be black and see bones. Maia, did you fight to make it to your birthday so your mom's heart was filled with joy? You tried your hardest, you gave it everything you had to give, we stood by your side, thought out of the box ideas to help you heal, cried for you, and we did not give up, we held you until you took your last breath. We, I love you Maia. 

I have been in so much more pain thinking about what Marcus must be going through. He can't fully express himself, tell us how feels, what he is thinking, why his eyes look sad. Why can he fall down, scrape his arm and get right up, but when he hears, no, stop, don't, he cries. Marcus has been playing, running around, laughing, farting, picking his nose, scratching his balls (private area) all the normal things a 6-1/2 year old boy does. This would be hard for any kid to comprehend, how to act, how to talk to people in his situation. It is darn hard for people I know and love talk to me, so it has to be hard for Marcus. 


During the birthday celebration in Maia's room as most of us all saw, Marcus climbed up into Maia's bed and sang happy birthday and many other songs to her. (video posted below) But before Marcus climbed into her bed he knew something was going on things were not normal. With all Maia's godparents there and some family members, then with around 40 plus staff members from UCSF. I took Marcus into a room across the hall as the front unit was empty for Maia's birthday celebration. 
I asked him "you know Maia is real sick?", 
Marcus "yes dad I do"
Me "How sick"
Marcus was quiet and his eyes dropped and looked at my heart. The Saturday before this I asked him the same questions and Marcus told me "Maia is so sick she can die."
Me: Marcus, what do you think if Maia became an angel, and was able to play with Marissa?
Marcus; with a sad face "I would be happy"
Me: Happy because she is not all hooked up to the machines and cannot move?
Marcus: Yes
Me: you know daddy, mommy, ninos , your ninas, everyone would be sad

Wife I am Sorry. 

I have lost pretty much all my worldly possessions. We lost our home and everything in it, had to sell my Harley, I almost had to sell my baby my down hill mountain bike, luckily its worth more to me than any one would pay. That all does not matter to me. I almost lost myself. I would never do what Robin Williams did. What I mean is I almost lost myself and got so selfish I was thinking about leaving my wife Rizza in OUR  journey. The woman I love. The woman that puts up with my farts, with my morning breath, bad and good days. My soulmate that loves my humor, laughs with me, laughs at me, that will stay by my side in sickness and in health, for richer or poorer, through having our girls become angels. I love you Rizza. I am sorry for when I was being mean, when I was scared, when I did not know what to do or say, how to hold you. I do my best to be the best person, husband, dad, buddy guy, friend, man of the house, I do my best. But I failed myself through our journey, but I did not lose, I did not lose faith, I did not abandon your side. I let evil enter my life, but it only won for that moment of weakness. I could never bear losing you and having to spend every other week or weekends seeing Marcus. Living apart from you and only hearing your beautiful voice on the phone, hearing you laugh without me and seeing you hand in hand with someone else... I almost lost what I really care about, you and Marcus. I did learn that I will be a better man, father, dad, buddy guy, a better husband and most of all that evil will never win, our faith and love for each other was sealed when we kissed at the alter. I love you.... 

Marcus has been pretty good through this weekend. He did have a couple times when he started crying so emotionally. His nino Dada and uncle Barry both pulled a prank on him and it set off an already fragile kid's tearful waterfall. Normally this kid would've been laughing and ready to think about what prank he was going to do in retaliation. As I was present for both pranks and thought about it, Marcus was expecting something normal to happen and when that did not happen he broke down. Much like being by Maia's side, her normal was the best thing ever for this big brother, but when Maia was not normal she closed her eyes and never woke up. It disrupted the flow that he had. He got over it and he played again as both times I took him for a piggy back walk and sat down with him, held him, listened to him in his cry talk, and reassured him that we are all sad, we all miss Maia, we all wish Maia was still here and at home and that we all have cried. During his cry talk he answered questions and said what he wanted to say, I am glad I have come to understand cry talk.. The whole rest of the weekend Marcus was pretty normal, even though I can see him hurting and needing extra attention, whether it was from us, his ninos, TV, legos or just time with himself.  Marcus is the best son ever, he is my buddy, my homie, my dude, Marcus is my everything mixed between Rizza and my genes and we see it all.  Marcus is the best big brother to his two angels, an inspiration to so many, a leader and teacher to all of us about love for your siblings, most of all Marcus is my HERO... I love you son, I love you Marcus. 


  1. I have been following little Maia story for quite a while. I am so saddened by the news. Yet be assured she has a very special place in Heaven--and also in my heart. Your little daughter's life was not lived in vain. I was a ICU nurse and I was empowered by the love and Strength you both had as parents and as a family. Maia will be in my Heart and in my prayers forever. God Love and peace to you. Nadine

  2. Thank you Gordon and Rizza for sharing with all ou us. To record Maia's journey and your journey with her to share with others is an awesome gift. I do not know how you managed to find the time, energy, and emotional fortitude at the end of your day to share with us. I think I would have crawled into my bed and hid under my blankets, but you found inner strength to let us into your journey with this incredible little girl. Gordon you are and have been an inspiration to youf wife, Marcus, and Maia. Yes, there had to be dark, dark desperate times, after all you are human. Rizza you,too, have been an inspiration to your husband, Marcus, and Maia. Each one of you have stimulated within us courage, strength, steadfastness, and very deep faith, even though there were times when you crawled through the Valley of Darkness. Only faith in and love for our Creator, our Master and Lord, could you ever manage to crawl back into the Light of the Lord. All four of you have made miraculous changes in all of us who have traveled Maia's journey with you. Thank you again and again for sharing her and yourselves with us. The Lord loves you greatly. You are richly blessed. My love and prayers are constant for all of you. Aunt Noni

  3. Thank you for allowing us to be a part of your journey. Through all the ups and downs your faith in God and family was inspiring. I have learned so much from your family and will be forever grateful. My family continues to pray for all 4 of you each and every night and will always be a part of the Mighty Maia Fight Team!


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