Friday, July 18, 2014

Ups and Down of the Past Month

I had to restart this post. I could not sleep the other night and was up writing, to come to find out that the post I started never saved.

June we made it home. I joked around for months prior to June, hoping that Maia would be home for my birthday. As we were home I thought that was going to happen.  Two years ago on my birthday we picked up Marissa's ashes then the following year we were at UCSF doing an 8 hour tour/appointment before the introduction of Maia, and this year we celebrated it in Maia's hospital room. Anyways after 40 you try to forget birthdays and tell yourself  i'm 32 again so its all good.  She was home for Father's day.

Maia chillen at home

Maia was really progressing at home. Off oxygen, close to normal baby feeding times, and not throwing up at all, just the normal spit up. Maia was drinking from a bottle more and more everyday. Her eye contact and her interaction was so fun and heart warming. When she would cry, it was hardly ever, and for a short period of time we sometimes would let her cry, so she can work on getting her vocal cords working better. As we would play with her we'd try and make her laugh but we have not heard one yet.  She was even spitting up adult size loogies.

Maia's first car ride was to go home, and she did great. The whole ride we were in the car asking Marcus for updates. He would say, "she is fine, she is breathing good and just looking around." Well every drive has been the same, Maia, looks around at the world that she had been missing for the last 9 months.

Shopping with Daddy
We took Maia to Marcus' end of the year picnic and to his last day at school. She
loved it and we were so happy for Marcus' classmates and parents to have met Maia after waiting a whole school year. I do want to thank the parents for the thoughtful gift. We took Maia to see her cousins, to the park, the store and to Gold Medal Martial Arts, Marcus' taekwondo. We went out and about to a lot of places. Maybe it was too many, maybe it was just right. We will never know. Maia was bound to get sick, and we were told it was "when" she was going to get sick, not "if," because it is going to happen.

During the time we were careful and did make sure we went to places that where outside or high ceilings. Her getting sick was not anything we could have avoided. We could've even got the cold ourselves and kissed her and gave it to her, no reason to try to sit and think how can we prevent her from getting a cold ever again.      
We can't put her in a bubble.

As mom was not feeling too good it was daddy and baby Maia day. I was happy it was just the two of us as we were off to her Dr. appointment. I did prepare myself, Marcus and Rizza as we always do, and discussed that one of the outcomes from the day's appointment is that Maia may be admitted into the hospital. So in the car and off to the Dr.'s we went. After arriving, Dr. Robertson took one look at Maia and said we need to go to the ER. She was off and started making some calls, all of a sudden we were walking across the street and taking the back way to the ER. Straight to a room and they started working on Maia and drilling me with questions. Going over all her meds and dosages and her (post Glenn) sats. At the same time, they started to go for an IV and I told them "good luck, you should call the picc line nurse," as they tried from limb to limb. At that point they obviously doubted me and looked at me like I did not know what I was talking about. But yes, I did know that getting a line in Maia is very hard. So after taking the stroller back to the car, using the phone and getting myself a Red Bull, I came back after 45 minutes and they just got a line in. I did think about things like... did we do anything wrong, could we have taken her in a day earlier, what signs did we miss, did we do something wrong. I knew that we did right, we brought Maia in when we felt she was not breathing ok, looking and feeling good. We did good. We did our best.

Taking the elevator up to 7 East.
It was kinda of a scary but happy moment. It was great to see everyone again but not so soon. We knew Maia was going to get sick but did not think so quick after leaving. Saying our hello's to our extended 7 east family, they all felt bad that we were back so early and happy that we did the right thing and bring Maia back sooner than later.

My mom and dad's church in Willits, CA The kids with the vacation bible school (VBS) are doing a fundraiser for the Heart of Maia Fund. They asked us to make a video, so I took what footage we had and recorded Marcus talking, and did a short interview of us. Here is part 1.

After downloading the free 30 day trial of Adobe Premier CC and getting more information about VBS (vacation bible school) and my mom and dads church is was off, movie mode time. Never giving up, but getting a little frustrated as many times during making these videos I did something wrong and had to start over again and again. Making these videos was easy as it was fun and rewarding. Here is part 2. Thank you Agape church and all the kids and families at VBS, we love you and God bless you.

It's been a month now that Maia has been back at UCSF Benioff Children's Hospital. At first it was a little hard getting back into the groove of going back and forth everyday but at the same time, it's also easy since it was our everyday life for 9 months. Either way it is a little different now. Marcus is on summer break, mother-in-law retired, and we were just getting used to being home everyday. A lot of emotions. The first 5 days Rizza stayed home as she was not feeling good and Marcus could not go since Maia was not awake. Also, with Maia having a virus, he could not attend any of the child life activities or go to any of the rooms, as he understands you do not want to pass a virus off to any children/patients. Maia has been progressing very slowly. Rizza explained all the machines in her last post and will do more on her next. I have been listening to her lungs everyday and seeing most of her x-rays. They went from no sound at all to what sounded like a little sonar blip, to them struggling as they sounded stuck together, to now working, not full capacity yet but working where everyone is much happier and Maia is able to come off of the ECLS (life support) machine. She is now slowly opening her eyes, looking all groggy and slightly moving her arms and legs. Just waiting to see her eyes all lit up and her happy face again and feel her strong grip. The nurses and Dr's all know that we know that what they are doing sometimes is out of the box thinking and we know this is what it takes to keep Maia alive. There is no handbook on how to take care of a Maia, a baby with several CHD's, history of kidney failure, and everything else she has thrown their way. For those who read this or know someone that is or may end up there at UCSF, let them know that they are the most caring, dedicated, hardworking bunch of nurses and Dr's and they are doing the best they can. And if the worst happens, value the time you spent with your loved one.

This has to be really hard on Marcus and we're doing our best to understand him, and make sure he understands everything that's going on. Like in the video, you can tell he does know what is going on. I did have to cut some of what he said out of the video, because he went on to mention how all the other babies across from Maia have died. We did not notice that he noticed, but after thinking about it, why would he not, he is right here with us all the time. A few babies across from Maia did die, at the hospital and shortly after going home. One of the things I pray to God about and know it will happen is, that Marcus learns and grows from all this. Everyday he says in this sad voice "I want Maia to come home" and it tears me up inside. I can help him with his homework, I can build things for him and teach him how to be safe on a bike, but I cannot tell him when his sister is going to come home. He spent his whole year of kindergarten going back and forth to the hospital to see Maia, and now he is most likely going to spend his whole summer doing the same thing. We are trying to keep him busy by sending him to camp, taking arts and crafts classes at Micheal's craft store, and his regular Taekwondo classes. We go for bike rides, go on hikes, walks... his uncles and cousins took him to Tahoe, and we take him on adventures around the Bay area. But what he wants most is his sister to be by his side at home so he can play and interact with her like they did for the 2 weeks. Most recently, one of Marcus' classmates bought a Maia Knows Heart shirt. This brought so much joy to Marcus that one of the kids from his class joined the Mighty Maia Fight Team. He actually jumped up and down with his fist to the air and cheered "Yes! Niko joined the Mighty Maia Fight Team!!!!!!"  Thank you Niko. The look on his face was priceless.

Remember this is a blog and a place to express what I am feeling. As positive as we have always been some things are not right. This is not directed to all of you that have been supporting us, praying, sharing our journey, liking our Facebook posts and Instagram posts and our blog. Thank you from our whole hearts and half of Maia's. So please if I say something in the next few lines you do not like, I am sorry, it's not at you, its at the situation... Don't offer to help if you're not ready and willing to help. We are not going to ask, tell you or call you unless we need help, which we've done a few times. Put it this way, my Compadre/best friend/brother, Pnut, if I called him right now, (now as I am typing 1:42am) and told him I needed him to come get Marcus for a couple days, he would not ask why, he would be on the way, he lives 2 hours away from us, and works later this morning, he would figure out how to make sure Marcus was safe and taken care of for whatever time was needed. We have asked for help in spreading our story, not only to help raise money for our everyday cost of going to the hospital but to make families, new mom and dads aware of what CHDs (congenital heart defects) are, and what life is like and how it affects the whole family. You do not know what myself or my family is going through, so if you tell us you can help and we ask for help, which we don't ask for much, then help. Don't give me an excuse or just not answer back at all. I do not want to sound like I am complaining, I just need to make sure it is clear, we do not ask for help much and it is not a pride thing, it is partly because we don't always know how to, but when we do ask, please help us.

Before the cold virus, we were planning on having a huge 1st birthday/ celebration/ happy year from 1st surgery party. It was scheduled for September 7th, with an estimated 400+ guest,  but it will take some time for Maia to recover, so we had to cancel the celebration... We had big plans. We were going to have live bands, DJ, magician, face painter, hula dancers, and a whole lot of other fun and entertaining things for kids and adults. We were going to invite all of our family and friends, all of Marcus' friends' families and our Facebook and Instagram friends and our blog followers, everyone on the Mighty Maia Fight Team.....  It is what it is..

Thank you everyone for the prayers, support, likes, words of encouragement and the gentle eye contact and nod.  Thank you God for everything...

Dad, Gordon aka G

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