Thursday, June 5, 2014

The Long Road Home


The last three weeks have been crazy busy at home and at the hospital. I remember it being 3 am Saturday morning and I could not sleep, but I didn't care, I was here at UCSF 7 North, the transitional care unit, sitting next to Maia as she sleeps.

As I sit, I think back over the past couple years. Back when we were in Dr. Meyer's office when we were going to have Marissa. Through our journeys it has been difficult for our family, but we know it must be difficult for Dr's and nurses and staff too. As Dr. Meyer had to give us the news, the bad news that when Marissa is born she will not live much after that. Her diagnosis was "lethal." It was like yesterday I remember sitting in the passenger side as Rizza drove us to Santa Clara Kaiser and walking Rizza up to the delivery room, to induce labor to have our daughter, that was to become an angel. Laughing, as I hopped around the room in a cast trying not to slip on the floor as it was all wet, because Rizza's water broke. I can still see and hear Marcus singing to Marissa as he held her in his arms, Twinkle Twinkle Little Star and Rock Ah Bye Baby to her. The whole room broke into tears. We thanked God, and valued all 2580 seconds before she became an Angel.

Marcus singing to Marissa
Saying good bye angel
It has been a crazy year and half. It all started when we found out we were having our third baby. A girl. Who was named not by me, but by Marcus. How we were so happy and blessed to have another baby. I remember Rizza's 1st ultrasound the tech's neck stiffened up and head was at full attention, waving the wand thing back and forth, up and down as he focused on the heart area. I knew there was something not right. As we watched he kept going over and over trying to get an accurate pic of the heart, and switching between screens and now watching red and blue blurs as her heart continued to beat, I could see one side was not the same size as the other. At that time he excused himself and said he needed to call a Dr in. After months of ultrasounds and testing we were introduced to HLHS hypoplatic left heart syndrome and DORV double outlet right ventricle.  We were told that they cannot give you a 100% answer til she is born and tested. But we knew her heart was not normal.   

Rizza is amazing, she carried Maia for 9 months, and delivered her. Knowing just a little over a year before this, she laid on a bed to deliver a baby that was going to become an angel. Rizza's last post about how she spent the night exactly 9 months after Maia was born hit me kinda hard. You're the greatest, I love this woman.


Many months have gone by and we have had a bunch of good times, we have met and made many new friends from different backgrounds and religions and spent our holidays with them. Great times and I will miss you all.

Weeks and months leading up to Maia coming home we were like sponges, learning everything and anything from all the  RN's, RT's, OT's, PT's , NP's, Dr's.
We learned how to help her be more functional, move her mouth so she can drink, move her fingers so her hand worked correctly, how to care for a baby with CHD's, what is and how to care for a baby with a trach, what O2, what CO2 is and will be and what was done at the 1st and 2nd heart surgeries, the Norwood and the Glenn.

UCSF, my family, friends, Heart of Maia followers, and people we have met since our journey began, you all helped in Maia's recovery. Your words, hugs, likes on Facebook, Instagram, and our blog, and your comments have always helped with our being as positive as we are, as you all have joined the Mighty Maia Fight Team. Pat yourself on your back, give yourself a hug and when you look in the mirror know that being positive heals.

Back in the early days of Maia being at the hospital, we started having family meetings to touch base so that we knew as a family, as a team, what was going on, what we hoped would happen and what could happen. We started to hear "you have a really sick baby" and "quality of life" and that "there is no record of a baby with her heart conditions and kidney failure that has survived." We knew that they were doing their jobs by informing us, keeping it real, and making sure that we knew all the possibilities, and what are options were. I thank Judith, our social worker (now newly retired!) for making these meetings happen and I thank everyone that attended them when their busy schedules allowed. As you all have read, we have been positive throughout our journey. I told them that I did not see Maia suffering and when I look into her eyes I see a little baby that wants to fight, and has the will to live.

3 am and awake, as I do my 24 hour shift with Maia at the hospital. Monitors off, and it is Maia and I. Nurses on standby watching her oxygen sats and making sure I am ready and able to take her home and care for her. I have never been able to sleep at hospitals but I did get about an hour of sleep and then got up and started my day with Maia as I would at home. Well I got the stamp of approval as each dept came by to teach me, test me, and to fill my mind with knowledge, about how to take care of a HLHS baby at home.

The rest of the weekend was busy as Rizza came to the hospital Saturday morning with a cup of love from Philz Coffee. Then we stayed for a little bit as it was Marcus' last T-ball game. We then made our way home, got Marcus and we were off to his game. I was extremely tired as I only had one hour of sleep. The Diamondbacks all did great, kinda wish that the season did not end.

video 
Marcus hitting the ball

Sunday morning came, and we were on our way to see Maia, the day before she was to go home. We made our regular stops then spent as much time as we could, stretching out the clock til we had to leave. Marcus was performing at the Foster City Arts and Wine Festival in the Gold Medal Martial Arts demonstration.





We hung out, walked around, ate of course, and then Nino and Grace took Marcus on the ferris wheel. He wanted to go on the one that went fast and upside down but he was still too short. Then it was off to go home and then to the Foster City Fire Department for infant CPR class because we wanted to be ready for anything. Thank you Captain, and FCFD. After training class was done, Marcus got a private tour, which was cool because we all learned things, such as the difference between a fire truck and fire engine. It was great to see him just so intrigued by all the supplies, tools and equipment that is used in fighting fires and saving lives. The funny thing is, a kid is a kid, and sometimes we try to get Marcus to stop and listen when he's asked questions and also to ask questions if he has any. Well today, all the times we tried to tell and teach him that, it paid off, he was the best kid ever. Even after the tour, we asked Marcus how many compressions and breaths do you give? Thirty and two he answered. Then it was off to dinner, and home to get some much needed sleep to start our next day.










Monday morning came and we started our morning with our usual stop at Philz Coffee in the Mission. We did excuse Marcus from school and brought him with us, of course. He got a hot chocolate and Veronica, the barista, adjusted it as needed, thank you. I also learned about the secret menu! We continued onto UCSF and started our last walk down the hallways as parents coming to see our child, but soon to be parents taking our daughter home. We said our good morning and goodbye to Mercedes, one of the security guards. As we walked into 7 North we were greeted with joy. Our 7 East family would stop by and say come by on your way out, like we would not! LOL.

We were in waiting because ABC 7 news was going to come film us leaving, but we just wanted to go home, but they were having camera issues. At the same time, 7 East was closed down and it was going to be a couple of hours, if not more til it reopened. So we talked and decided we would leave and asked if they can come out and say goodbye. Following Marcus as he pushed the stroller, 7 East came out and we all said our goodbyes, Marcus even sang his Maia going home song. Goodbyes were done and hugs given and we were about to make our way downstairs.
A handful of love the Mighty Maia Fight Team 7 East 

Then the elevator doors open and out comes Oliver, Maia's music therapist, what timing. He pulls out his guitar and sings his Maia going home song and it made me tear up and others too. Then we made our way to the car. Onward home. In the car, Maia did great, just looking around at all the new scenery and enjoying being out in the world.

The 1st day Maia was home, she acted like she was never in the hospital. She has not thrown up, does not have to have the fan on her 24/7, and the best part is she is laughing and smiling all day long. We have been blessed, she sleeps through the night and it's been a great transition. Still here adjusting our room to accommodate her meds, syringes, everyday baby stuff and I even had to make an exhaust for the O2 machine, because it heated our little room up fast and as we all know Maia likes it cool, like her brother and dad.  The next day we went to Maia's 1st official Dr. appointment, with Dr. Robertson. Even though it was only a couple days since we left, it was a reunion. Maia checked out great and we wanted to go up to 7 East and visit but we had to make our way home to get Marcus to Taekwondo on time.

1st Dr. appointment

Thank you everyone for reading my post. My mind has been all over the place, just like the last few weeks have been. Our family has, and will always will be positive. We have what is called personal faith, faith in ourselves to change things. Like at the hospital when we were told about the quality of life, we did not accept those words. Instead, our faith in God and our personal faith made us tell everyone that her quality of life is getting better and we will get through this, Maia will get through this. It has been a journey that is not over, we've only come to a new fork in the road and as a car lover, we will drive this road like we own it. Some good news, Rizza, along with Judith our social worker and Rochelle in billing, all figured out a way to get the 10's of millions of dollars that has accumulated over the past 9 months to be paid off. We still have bills that we owe but nothing compared to what we were looking at. Even before we left the hospital we were finding out with insurance some things are not covered and it is out of pocket. I have been actively looking for work, even with the difficult circumstances. For blog readers, both old and new, I was working last year and when I applied for PFL (paid family leave)  where I was working, all of a sudden let me go telling me "I was not working out." When questioned what is not working out to both managers, they looked at each other and had no answer, other than it was "not personal" and "not because your daughter is in the hospital." Throughout the time I was working I kept my work notified on what was going on, before birth and after. We're not the suing type of people and we did not want our focus and energy to be on something so negative, plus we believe in karma. A few months after I was let go, the manager was let go. We always think someone has it better than us or someone has it harder than us but we appreciate what we have, each other. As Grand Master Perez (Marcus' Taekwondo teacher) teaches his students, you have to work for what you need and want. We do ask that you please purchase a shirt or sticker, to help us pay for the things on our new journey at home. I can't stop saying this, but thank you to everyone for the support, prayers, and everything that you all have done to help get Maia home.









2 comments:

  1. Sooo Happy For All Of You. And Blessing For All. Lots Of Best of Wishes And Luck.

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  2. With love, faith and hope all is possible. God knows and sees our situations and with amazing grace we make it through the impossible. My angel is Mariah and i miss her always. Gordon you and your family are truly the example of what faith is. God bless you all. :-)

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