Monday, December 30, 2013

Enjoying the Holidays...

Christmas this year was a little different, with Maia being in the hospital, but just as we've been doing, we adjusted our schedule around our daily visits with her. It's been over a week now since Maia had her trach tube put in and she's been doing well and has been discovering new things, like the taste of her fingers and mittens! Marcus has also been doing some new things himself like riding his new bike (without training wheels). So it's been an exciting Christmas for us and we're all looking forward to 2014!

Treats for Santa
Marcus and his red pillowcase!
At home, Christmas Eve was a very busy night for us. We attended the Midnight Mass, which actually ended at midnight, and put Marcus to bed as soon as we got back home. Marcus had already prepared some rice krispy treats and hot cocoa for Santa, along with his pic with Santa, "in case Santa didn't remember him." He also had a couple of his teddy bears on the table ready to greet him! We reminded him that Santa wouldn't come if he sees that he's still awake! So with Marcus asleep, we were all able to finish wrapping gifts. Our big gift to Marcus was a brand new bike. He'd been riding a balance bike (no pedals) for a few months now and felt he was more than ready to transition into a big boy bike. So Gordon put the bike together then hid it under a big wrapped box. He then wrapped his helmet and put it under the tree. So on Christmas morning, we all slept in until we heard Marcus' heavy footsteps going down the stairs and his loud voice yelling "it's Christmas, it's Christmas!" He excitedly opened everything and was happy to see he got pretty much everything he wanted and more! Santa got off easy this year since all Marcus asked for was the Crayola Melt & Mold Factory, construction paper, and a red pillow case! He received the Melt & Mold Factory from his Kris Kringle at our family party, so Santa must've been very happy too see that Marcus didn't ask for much! Just like her big brother, Maia didn't ask for much either... on her list were mainly some baby blankets, headbands, socks and shoes. She still can't wear clothes, so accessories are a must!... then we were off to see Maia for our Christmas visit!

Marcus' new bike
video

This is Marcus after the 3rd day of having his bike. Day 1- he picked it up and started riding, day 2- did a 3 mile ride, where I was trying to keep up the whole time. 



At the hospital, we've all been preparing for Christmas by decorating Maia's room and by having Marcus serenade everyone with his Christmas carols. The PCICU was decorated with the Candyland theme, and Maia's room was the Peppermint Forest. The hospital even had a day set aside for parents to help Santa go shopping for their kids, because Santa also stops by the hospital to give sick kids their presents too! It was actually a quiet Christmas day, as many kids that were able to go home, were discharged from the hospital and there were no scheduled surgeries or procedures, so there were only a few doctors and nurses working that day. Marcus kept them all entertained by singing Up on the Housetop, Rudolph the Red-nosed Reindeer, and Peppermint Stick. Maia was wide awake and got kisses from all of us. She received many gifts from Santa, friends and family, and even some nurses too! Although we had to celebrate Christmas with her at the hospital, we made it as merry as possible!
Marcus and the nurses

Merry Christmas Maia!

This past Friday, Maia had her first trach tube change. They ended up not going up a size like they first thought they would, so her new tube is the same size as the old one. They will be changing out the tube every week, and changing her velcro neck ties daily. For the first seven days, they tied it very tightly to make sure the tube was secure. Now that she's past the initial first week, they can now loosen up the ties a little bit. The site of her trach tube was at first a little bloody, but has since started healing nicely. Maia can now move her head more and is slowly being weaned off of the pain meds again. We expected her to be more sleepy, but she's been very awake and active during our visits. She seems to be as alert as ever and has now started to crazily suck her fingers! She started out with a little "taste test" on Saturday and by nighttime, she didn't want her paci anymore and preferred to have her fingers in her mouth! She even sucks her fingers while sleeping! When she has her mittens on, she licks those too! She looked like a little kitten, licking her paws! Maia has also started what the doctors and nurses call "sprinting." They're her breathing exercises when she's not supported by the ventilator and when she has to initiate the breaths herself. She's been doing very well and seems to have no problems. For now she does them 3 times a day for about 30-45 minutes each time. I call them her little workouts! Since she's been very stable lately, the nurses have been suggesting that we hold her. We usually hesitate only because we're not sure how it will effect her... if she'll get mad, if her blood gases will look bad, etc... but today we gave it a try and she did really good! Maia was very calm and relaxed and enjoyed some people watching! I last held her in my arms sometime in October when she was tiny, and now she's a chubby 10 pounder! She turned 4 months old on December 29!! Our little girl has been through so much and she continues to amaze us! So we're definitely ending 2013 on a good note! God is good!
Yummy fingers!
Maia yawning and playing with her rattle




Monday, December 23, 2013

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 29th 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 1st surgery and seeing her face for the 1st 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 20th 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.  


Sunday, December 22, 2013

Chubby Cheeks...

Before surgery
On Friday afternoon, Maia had her surgery to get a new working catheter and also to get a trach tube put in. We stayed with her until it was surgery time, and I was able to take the trip with her down the elevator and into the entry way of the operating room. As always, I gave her a lil pep talk about being a good girl and not to cause any trouble! The anesthesiologists always seem to laugh when I do this, but I do my best not to pass on any nervous or negative energy I have onto Maia and also the surgical team! So I think they're used to it by now! So I gave her a kiss and told her we love her and that we'll see her soon!... it was now time to not think about the surgery!!! Of course this is easier said than done, so I asked Marcus for some help... it was time to go shopping!


Marcus & Po Bear
Marcus and I had a very successful afternoon of shopping. We finished shopping for gifts and even had time to get him one of his gifts, a police officer bear from the Build-A-Bear store! He was so excited and knew exactly what he wanted... a bear built on the cuddly side (not too firm), dressed as a police officer. So we proudly introduce the newest member of our family, Po Bear Mead. We also experienced a couple of proud parent moments as Marcus came up with the idea of picking out some books as gifts for his baby cousins (anyone younger than himself). He was very specific about the pairing of each story book and baby too! Then on the way home while at a stoplight, we saw a man holding a sign, which Marcus read aloud, "HUNGRY." He asked if we had anything to give him, and I happened to have a couple of kids' z bars with me, so Marcus wanted to give one of them to the man. Unfortunately, we didn't have time to call him over before the light turned green, so Marcus now has a bar set aside in the car, ready to give out, in case we run into any hungry people! We're so happy this little man understands what it means to help and share, not only with family & friends, but to anyone that needs it! With the help of Maia, I think Marcus is finally getting over what we have called "Only Child Syndrome!"


While walking around the mall, we get a call from Dr. McKenzie, the pediatric surgeon replacing the pd catheter. She said her part was done and everything went well. She was able to go through the same incision and simply switch out the old catheter for the new one, with no complications. Maia was still in surgery, having her trach tube put in. So after about a couple of hours of not hearing anything from the Drs, we went home and I checked in with Maia's nurse. Maia was back resting in her room, but the nurse is not allowed to update on surgical procedures, so she would have a Dr. call me back. It wasn't long before Dr. Stephanie Ogawa of the PCICU called. She said Maia was resting comfortably and still sleeping. She now had a new trach tube in place on her neck and her cheeks were now free from tape! It turns out Maia's trach tube size is in between the available sizes they had. So the correct size for her was ordered and would be put in next Friday during the weekly cleaning of her tube. For now she has a smaller one in place which works fine, but the tube on order would probably be more comfortable for her. After her surgery, her blood gases didn't look so good, but after an hour, they were perfect. She just needed some time to adjust. So after that update, we all breathed another sigh of relief and we were able to get a good night's sleep.

Saturday was another busy day for us. We started out by sleeping in, a rare treat for us! Then it was off to a birthday party at Chuck E. Cheese in Gilroy for one of our niece's 1st birthday! We had a great time catching up with family and friends, and Marcus had a blast, spending most of his time playing games and collecting tickets! But of course our thoughts were all on our baby girl! So then it was off to UCSF for our daily dose of Maia! We were all so excited for this visit and couldn't wait to see her face! We had a feeling she would be sleepy and groggy from being sedated so much, so we didn't expect her to be awake... but of course we didn't mind.


Maia with her new trach tube
We arrived to find Maia sleeping and we all just stared at her beautiful face! Her nurse, Mina, explained all the changes and updates regarding her recovery from surgery. Then the respiratory therapist explained the parts of the trach tube and how it worked. Then to our surprise, Maia woke up... she probably heard everyone talking about her! Once again she was very alert and tried to grab at her tubes, just as she always does! Her nurse said that she's actually been awake off and on during the day and has been very comfortable that she didn't need much pain medication. We think this is all due to her high pain tolerance! Anyway, it was unfortunately a short visit because we were off to another party... our annual Mendoza Kris Kringle Party! Hopefully next year Maia will be able to join in on all the fun and festivities!! For now, Maia celebrates with everyone in spirit! Enjoy the pics!


A kiss from big brother
Maia staring at the camera


I love it when she yawns! so cute
"I'm trying to rest, what's with all the noise?!"

Thursday, December 19, 2013

Forward Progress...

It's been a while since my last post! Time has been flying by, especially now that Christmas seems to be creeping up on us! We've been keeping busy with Marcus and his activities, some online shopping (thank you Amazon!), organizing and preparing for the Hot Chocolate Run on January 12, and lately, we've been trying to sneak in a morning walk or jog to get some sort of exercise! All this while trying to continue to balance our hospital life and our home life....

Maia has been pretty stable lately with no major changes after moving into a crib 2 weeks ago. Much of the discussion about her has been about her PD (peritoneal dialysis) catheter. Her dialysis was stopped 3-1/2 weeks ago on November 25 and she's done well enough that Drs. agree she doesn't need it right now. After her first week off dialysis, the kidney Drs. were worried that she couldn't balance her fluids and that she would start to swell. Maia did gain weight that week because of fluid retention so they actually tried to restart her dialysis... but it didn't work! The catheter seemed to be blocked. They even put in a special solution hoping to dissolve whatever was causing the blockage, but that didn't work either. So at this point, they couldn't restart the dialysis even if they wanted to without performing surgery to replace the catheter. So they capped off the non working catheter again and each following day, it was discussed whether or not she needed dialysis and/or the catheter. While all this was happening, Maia started to lose some fluid weight, meaning her kidneys were adjusting to not having the dialysis, so the discussions continued about whether or not she needed the catheter. The kidney Drs. wanted to replace the catheter with a working one, so if she needed dialysis again in the future, Maia wouldn't have to undergo another surgical procedure at that time. But before any decision is made, Maia's team of cardiac, renal, and ICU Drs. all wanted to be on the same page and they wanted to hear each other's opinions. So for days, we were updated on how the daily discussion is still ongoing and that no decision has been made yet! It was a little frustrating but we got used to it!

We also had our weekly meetings with Maia's Drs.... Last week's meeting with Dr. Patrick McQuillen left us feeling a little down. He explained both the good and the bad things going on with Maia, so it felt like a roller coaster ride that ended badly. He mainly pointed out that although she's making progress little by little, day by day, the bigger picture of her prognosis didn't look very good, especially since there is no baby that has survived this combination of HLHS and kidney failure. He made it a point to emphasize "quality of life" and if we ever felt that Maia has been through too much and was suffering too much, to let them know... and although we've been told this many times by different doctors, it still hurts each time they say it. It didn't help that the way he explained things was by mentioning one good thing, then countering it with a bad thing, so our emotions were dragged up and down continuously! But at the end of the day, our feelings remained the same... we would continue the fight! Knowing how sick Maia is, we all agreed that she looks strong and is very alert. She's come a long way in her recovery and has continued to amaze everyone!

This week's weekly meeting was held today with Dr. Sarah Tabbutt. Thank goodness the meeting was with her because I think we needed to hear some positive things today! Since we all know the seriousness of Maia's condition, she focused on the next steps of her recovery. She also explained that many discussions were taking place regarding Maia's progress and recovery because many times, the Drs. are unsure of what to do since we are all in "uncharted territory," and do not have another case to refer to or draw experience from. She doesn't like to focus so much on the big picture, because for Maia it's difficult to look that far ahead... and when they do, it's usually nothing good since no baby has survived what she has! Anyway, she updated us on what decisions have been made so far regarding the PD catheter. Maia has been scheduled to go to the operating room on Friday to remove the old catheter and replace it with a more permanent type of catheter. The non working catheter is a temporary type and the more permanent one will have less chance of blockage. Although they are replacing the catheter, there are no plans to restart the dialysis. They just want it set up in case she needs it in the future, but since they don't know if she'll need dialysis again, she may never even use it. Another thing discussed was a tracheostomy, a surgical procedure that creates an opening into the trachea (windpipe) in the neck where a tube is placed into the opening to create an airway. This would take the place of the breathing tube that's been in her mouth since birth. She would wear a strap or collar around her neck to keep the tube in place, but her mouth and face would be free of breathing the tube, making her able to cry and also move her head around. This would also make it easier for her to do more "sprint" exercises and practice breathing on her own until she can have the trach tube removed. Another reason they feel this would be better for Maia is because she's almost 4 months old and this would help her development with being able to move around more and expressing herself by crying, something healthy babies her age have been doing for a while now. This was all discussed at the meeting and Dr. Sarah left early to check on a patient. She then returned several minutes later, after speaking to Dr. Gordon, the cardiac surgeon. He suggested having the trach tube put in after replacing the catheter. It would add only 20 minutes to the surgery time and this way, Maia wouldn't have to have a separate surgical procedure to put the trach tube in. So we agreed that it might be best to get it both done at the same time... So here we go again, another trip to the operating room! Once again we are excited and nervous. 

Being in "uncharted territory" feels like both a good thing and a bad thing. Good because Maia has made it this far, while no other baby has, and bad because the future is unknown and statistics show it doesn't look too bright. But I think I've mentioned before how I feel about statistics... I don't put too much thought into them since for the past 2 years or so, we've been that "1" out of hundreds of thousands that this could happen to. We've been told not to worry because the chances of something happening are 1 out of hundreds of thousands (I don't have exact numbers, but I'm hoping you know what I mean.) We joke around and say we really are the "chosen one." For once I'd love for Maia to be the "1" that proves everyone and everything wrong... to be the "1" that survives this and opens up new avenues for different treatments to help future babies!

The holiday season is a time for family pictures. So this past week, Marcus and I went to the mall to take his annual pic with Santa! He told Santa his list: Crayola Melt & Mold Factory, construction paper, and a red pillow case! Every year it seems Marcus' list gets more unique! I guess Santa agreed to try and get these for him cuz they sealed the deal with a fist bump! Santa also came to visit Maia at the hospital! Unfortunately, she was asleep at the time, but I was able to dress her up in her Santa bib for the special occasion! I'm hoping Maia isn't too sleepy next week for Christmas, so that we can take some family pics with her!

Saturday, December 7, 2013

"Good..."

When asked by family and friends, and well wishers too, on how Maia is doing, our automatic answer is usually "good." Whether or not we go further into detail about how she's doing usually depends on how much time we have to talk, the surroundings (party, shopping mall, etc.), or even something as simple as how we're feeling at that particular moment. Lately, we've been realizing more and more that using the description "good" can be very misleading! 

One of Maia's good days... she was upgraded to a crib!
As Maia's parents, the term good is all relative. We know the seriousness of her condition, so having a "good" day for Maia pretty much means her vital signs were good, her blood gases were good, she was stable and had no complications... sometimes it can even mean she survived another day! For Maia, things can change at any moment so assessing her each day is very important. When telling people that she's doing good, this usually leads to the question "when will she be coming home?" But of course our definition of good is completely different from someone else who's not in our situation. Their well-intentioned question is one that nobody has the answer to right now, not even the doctors. It's one of the reasons why Maia is assessed on a minute to minute, day to day basis because she is still very sick and any setback like a fever or infection can potentially be detrimental to her. Every time we're away from her and receive a phone call with a 415 area code, our hearts pound violently and we are terrified! So far, we've only had one middle of the night emergency phone call (knock on wood), when they had to reopen her chest. Unfortunately, there is no time frame on when she may be coming home... and we really are ok with that! For me personally, if there comes a time when the Drs. are able to give us some sort of date, I don't want to know! It's like setting myself up for disappointment! I might have my heart set on that particular date and when that time finally comes and she doesn't end up coming home, I will be so sad... so I would rather take things day by day and be pleasantly surprised when that day finally arrives!
Some of Maia's facial expressions

Visiting

Many have asked if they can come and visit Maia. Since she is more stable than she was about a month ago, we feel a little more comfortable letting visitors come and see her. Please keep in mind that she is in the pediatric cardiac ICU, so it's important to follow their visitor guidelines, especially during flu season. We simply ask that you contact either me or Gordon and let us know when you would like to come visit. We are there everyday, but at different times, since we also try to spend time with Marcus. We also ask that anyone not be sick, or if anyone has been sick, to wait a few days, even if they're feeling better. Both Gordon and Marcus were sick during Thanksgiving week, and as much as it hurt them not to see Maia, they both had to stay away because it just isn't worth it to get her sick. Children under 12 years old are not allowed to visit, so please do not bring kids, if at all possible, for both their protection and for Maia's. Also, please keep in mind that Maia is recovering from surgery and has scars, tubes, wires, and IVs... it's one thing to see her pictures, but seeing her in person may be overwhelming for someone who's never been in a pediatric ICU.


UCSF Benioff Children's Hospital Visitor Guidelines

Parents may visit at any time. However, you may be asked to leave the PICU if there's an emergency or a need to perform a special procedure.

Sisters and brothers may visit after being screened by a PICU staff member. Please closely supervise your children at all times. Children under the age of 12 who are not siblings are not allowed in the PICU.

Family members and friends may visit if accompanied by a patient's parent. When a parent can't visit for an extended period, arrangements can be made to allow relatives or friends to visit unaccompanied by a parent. However, you must leave written permission with the unit service coordinator. Please keep in mind that we may need to limit the number of visitors to maintain a calm and safe environment.

For visitors, we have a waiting room with a TV. There also is a kitchen equipped with a microwave oven, refrigerator, freezer and cabinets that you may use if you wish to bring food to the hospital. Please ask your nurse if you have questions.

Visitors are not allowed if they have a cold, flu or fever or if they were recently exposed to a contagious disease.
Marcus chose a Charlie Brown Christmas tree for Maia

... and whether or not you're able to visit, we thank each and every one of you for all your prayers, love, and support. We are grateful and blessed to have you in our lives.


Tuesday, December 3, 2013

Our Thanksgiving Week...

This past week was quite eventful for us! We celebrated Thanksgiving, enjoyed our Home For The Holidays staycation, and for some of us, battled coughs and sniffles, and also a bad back! We all had our own reasons to give thanks and celebrate, including Maia. This 2013 Thanksgiving holiday was filled with family, friends, food, and fun... the way it should always be!

Wild hair during a wild week

Our holiday season started off nicely when our social worker, Judith, asked us if we'd like to stay at one of the local hotels for several days, during Thanksgiving week. It's called Home For the Holidays, when the hospital chooses 6 families whose child is hospitalized, to spend some time at a nice hotel. Despite living locally, she thought it would be a nice idea for us to get away from our house and stay at a nice hotel to rest and relax, and it would all be complimentary, including valet parking... of course we said "yes!" So our plan was to pick up Marcus from school then head over to see Maia, before checking into our hotel, the InterContinental San Francisco... our temporary home for the next several days! But while walking Marcus to school, Gordon and Marcus were trying to step on each other's head shadows... and to make a long story short, Gordon ends up on the ground on his hands and knees, in pain! He hurt his back yet again! Let's just say he walked funny in the days ahead! Anyway, we enjoyed every minute of our stay at the beautifully modern and luxurious hotel! Marcus actually insisted we live there and didn't want to go home! We all enjoyed the floor to ceiling windows with views of San Francisco and the bay, and also the indoor pool. It was also nice to be only a few minutes away from Maia at UCSF and not have to worry about traffic! Additionally, we were also closer to our favorite coffee place, Philz Coffee in the Mission! 

Marcus checking out the view from our room
Pool time

Monday might've started off rough with Gordon re-injuring his back, but it ended very nicely with our daily visit to see Maia! We walked into her room and was greeted by her nurse, Janet, who says to us "they're stopping her PD today at 4pm!" The Drs had discussed stopping her peritoneal dialysis before, but that's as far as it got, talking. So it was a nice surprise to have it finally happen! So after draining for 10 minutes, they disconnected part of the catheter and capped it off. The kidney drs. plan to watch her over the next couple of days and hopefully get a better idea of how well her kidneys are working. They also expect Maia to have her breathing tube removed soon, so they wanted to test her kidneys before extubation, in case she has trouble peeing and starts to swell, which may make it harder for her to breathe. So we've all been crossing our fingers for some good results!

The day before Thanksgiving we attended Marcus' Thanksgiving feast, where his class sang songs and then we all enjoyed dishes from each students' culture, so that everyone could try something new to eat. Marcus filled himself up with about 10 cucumber rolls (vegetarian sushi). It took forever for him to eat them though because he insisted on getting one roll at a time! While all the other kids loaded up their plates with chow mein, pita bread with hummus, cookies, and cupcakes, Marcus had one roll with an occasional watermelon slice! He certainly has a mind of his own and knows what he wants!... Crazy kid! We then had our family's annual Turkey Bowl dinner, held the night before the flag football game. This year (and last year too) Gordon and I opted out... we officially retired about 2 years ago! The following morning was spent at one of the local parks watching the family battle it out in this year's Turkey Bowl. It was an unusually warm morning in the Bay and we were all sweating by the end of the game, even those that didn't play, like me! 

Marcus' kindergarten class singing during their Thanksgiving Feast

Marcus watching Turkey Bowl from up in the tree
Unfortunately, by this time, both Gordon and Marcus had come down with a cold. Not a big deal, except when you have a baby who is recovering from the first stage of a three stage surgery... and that would be us! So they both had to stay away from the hospital and could not visit Maia for several days. A cold to us is such a minor thing, but if Maia gets a cold, it could cause a major setback in her recovery, and she may even die... so it's not worth it to come and see her when they're sick.

Thanksgiving dinner was at my parent's house where we had all decided that we didn't want turkey this year! None of us really like turkey and in years past, it seemed like such a waste to serve it while nobody ate it... so this year we happily agreed on having crab as the main dish! It is crab season and this year, we had no leftovers! We're actually thinking of having crab again for Christmas! I can't get enough of it... however, there are times I get an allergic reaction, so I do somewhat of a taste test. If my lips tingle, I stop. The times I didn't stop eating crab after feeling the tingling sensation, my lips got huge! (Similar to the movie Hitch and the benedryl scene! Not pretty). But this time, there was no tingling, and that was one thing I was thankful for this year! 

For the rest of Thanksgiving weekend, I visited Maia solo or with my brother. This included Maia's 3 month birthday, which was the day after Thanksgiving aka Black Friday. So we celebrated privately and quietly by reading some books, donated by an alumni family of the PCICU. Each time I entered her room, I was searching for the dialysis bag (dextrose solution) that usually hangs up high near her bed. For the last few days it hasn't been there! We are so happy that the Drs are giving her a chance to pee and show them that her kidneys can do the work. Of course this all isn't possible without the help of Maia's nurses. They, like us, are also her advocates. They know her as well as we do (and maybe even better!), so they've been making themselves heard whenever the Drs have wanted to start the dialysis again... Nurses, another thing we are so grateful for!

Maia at 3 months old
 On Monday, the Drs. decided to try and extubate Maia! She had been practicing for about a week while still on the ventilator. They do this by turning off some of the settings and having her initiate her breaths... they call it "sprint exercises" similar to incorporating sprints when running to train for long distance runs. When it came time to finally extubate her and remove her breathing tube, the respiratory therapist and nurse carefully removed the tape from her face, then placed the nasal canula, the small tube that goes into her nose, into her nostrils. Maia did not like this! I was able to sneak in between the Drs. and get a pic of her and her chubby cheeks, but she was so mad and I felt so bad for her... then they removed her breathing tube and she got even more mad! They gave her a pacifier and had me hold it in place. This usually calms her down right away... but not this time. I actually heard her try to cry too! She sounded like a little puppy with her whimpering cries! After several minutes, I could tell it wasn't looking good and they decided to put her tube back in. I was somewhat sad but also relieved to see her calm down again. She seemed to panic as soon as the tube was removed, which is understandable since she's only been without it for 1 day of her 3 month old life. Then after that initial shock and reaction, her breathing seemed too out of control for her to calm down and breathe on her own. It was a little disappointing but the Drs. quickly reminded me that it's amazing that we even got to this point in her recovery and that we shouldn't consider this a setback. It didn't go so well mainly because she wasn't strong enough yet and that all she needs is more practice, more sprint exercises, to build up her muscles and strength. Her blood gas results and her vital signs were all very good, so they said were very happy to see her do as well as she did... it's only a matter of time, and after she builds up the strength, they expect her to have no problems. It kind of reminds me of long distance runs... it's very hard to run a race with little or no training. The more you train, the better your results will be!

Waiting to be extubated
 
Maia during extubation

















So like I stated earlier, it's been quite a week for us, as our roller coaster ride continues! During the Thanksgiving holiday is when most people reflect and think about what they're most thankful for... but during these last couple of years, I've realized that I should be grateful everyday for everything, including the good and the bad. We shouldn't be or feel thankful for just one day. We should always be this way, and just use the holiday as a reminder to continue being thankful and grateful. Without the ups and downs we've experienced, we wouldn't be who we are today. I truly believe that we are right where we're meant to be in life. God has a bigger plan for us, and he chose us to be the parents of Marcus, Marissa, and Maia for a reason... and for that we will always be grateful!

Hope you all had a wonderful Thanksgiving!

 
 

Sunday, November 24, 2013

Baby Steps...

The roller coaster ride that is Maia's recovery continues every day for us... it's the main reason we take things day by day, otherwise, we'd all be overwhelmed and crazy trying to deal with everything! This past week Maia battled through a fever and possible infection, and also continued moving forward in her recovery by taking her baby steps toward getting better.

Setbacks for Maia can be quite scary and discouraging. So whenever they happen, we just hope and pray she can overcome them. This past Tuesday Maia had a day where she was extremely sweaty. Her back and head were wet and her sheets were soaked! She didn't seem bothered by it so the nurses just changed her sheets. Gordon also mentioned that she's just like her uncle, who gets sweaty often, and that he himself gets hot very easily so it could be something that runs in the family. But the following morning Maia had a fever. The doctors immediately had some tests done and put her in isolation, meaning everyone that comes in to her room, must wear a mask to protect her. They also put her back on antibiotics. Her fever was gone the next day but she remained in isolation for a another day until some of the tests came back negative. For now they will continue to let the antibiotics finish their 7-day course. Fortunately, it seems as though it was just a fever and nothing else because her white blood cell count did not increase and she's showing no other signs of a possible infection. It could've been much worse but Maia recovered quickly and won this small battle!
Maia with her crazy hair
We also had one of our weekly meetings on Thursday. Some of us were finally able to coordinate schedules and get together for a few minutes. This week, the doctor was Dr. Peter Oishi, a pediatric critical care specialist for the PCICU. Our last meeting with him was a bit discouraging as he seemed to over emphasize all the negative things going on with Maia. However, we do understand his point of view and it actually helps to hear from someone who doesn't sugarcoat anything. He went over some of Maia's short term goals, including slowly reducing her vent rates so eventually she can be extubated (remove her breathing tube). A few weeks ago she was at a rate of 50 and today she is at 16! So we are all excited about that... it means we'll be seeing her face soon! He also mentioned that they plan to keep the dialysis the way it is and not make any changes right now so that more focus can be on reducing her vent rates. He talked about how Maia has overcome a lot but that she's still extremely sick. Anything is possible and that we should be prepared for anything and everything at all times. He also wanted us to be able to talk about anything to anyone. If we had any concern or felt uncomfortable with the way Maia is being cared for, we should let them know. Since Maia cannot talk and communicate her thoughts and feelings, he felt it was extremely important for us, her parents, to be her advocates. Dr. Oishi also stated that Maia is the only living baby that has this combination of HLHS and kidney failure. They know of no other baby that has survived this, so they're happy to see that Maia is a fighter and continues making small, important steps in the right direction. He, along with all the other doctors and nurses, love taking care of Maia... out of all the babies in the cardiac unit, she's been there the longest, so they've all bonded with our sweet baby girl.
Our little sleeping beauty
During our Saturday visit, Maia was very active. She was constantly trying to grab her breathing tube! Fortunately, her arterial line is now on her right arm, so she's unable to move it around as much. They finally took it off of her right ankle area where it had been for almost 3 months! Although it looked very messy, it worked so well that the nurses were hesitant to clean it. It's known for not getting infected so they never worried about it. But now it has a new home on her right arm and her ankle/foot area can rest and heal. That doesn't stop her from trying though! In fact, she kept swiping at it with her left hand. The bad thing about this is that her left fingers are still healing from not getting good circulation when she had an IV placed in her left arm when she was first born. Her fingers have turned purple then black. They have been slowly healing on their own but the doctors told us there's a chance she may lose her fingers tips! We were sad to hear this but considering her overall condition, we really didn't mind so much. Since then, only the very tip of the 3 middle fingers are black... and in the process of trying to grab her breathing tube, the black tip of her ring finger flicked off! I saw it all happen and let out a little scream! I was expecting the "tip" to have some finger flesh on it, but it didn't! Instead, it was more like a rounded black scab. When we checked her finger, we were all pleasantly surprised to see a nice fully healed finger! Yay! Now only 2 fingers are left with black tips! We're leaving them alone and the black tips can fall off when they're ready.
Maia waving with her black fingertips
On our visit this morning, the doctors mentioned during their rounds, that since Maia was getting close to extubation, it might be a good time to see how much her kidneys are working, by lowering her dialysis rate. This way, if she needs more breathing support, she can still get it since she's on the ventilator. So this afternoon, they started setting up this process. Since Maia will have to let her kidneys do the work, they anticipate that she might get swollen since her kidneys might not be as efficient as the dialysis... at least not yet. As a result of being swollen, it may put pressure on her lungs so they've increased her vent rate to 25 so if she needs help breathing, she'll have that support. They will watch her closely to see how her kidneys respond. If she doesn't do well, they'll put her back on her regular dialysis rate and continue reducing her vent rates until she can be extubated. If Maia responds well, they'll see how long her kidneys can continue to do the work, and slowly adjust the vent rates as needed. It's not so much a pass or fail test... everyone, including us, just wants to know how much work her kidneys are doing. If her kidneys don't respond well, they will wait and try again at another time since her kidneys might not be ready to take on the full work load just yet. We all just want the best for her so we're all very anxious to see what happens!

This week was also quite exciting for big brother Marcus. First, he celebrated his 6th birthday on November 16. Then Friday night he earned his blue belt in Taekwondo! He was also invited to the prestigious Black Belt Club and will be one of the youngest members! He didn't look nervous at all and his instructor, Master Perez, who was the Taekwondo gold medalist in the 1992 Olympics, said Marcus did an awesome job! We're so proud of our lil man! 
Marcus with Master Perez

Happy Birthday Marcus!




As a reminder, join us for the Hot Chocolate Run in San Francisco on Sunday, January 12, 2014. We will be making Mighty Maia shirts, available for purchase, so let us know your size and how many you would like to order! For more information, please refer to Gordon's post, "Message from dad..." and visit the website Hot Chocolate 15k San Francisco. Hope to see you there!

Thursday, November 21, 2013

Message from dad.. Gordon aka "G"

Hello, I am Gordon aka "G" Maia's dad, and this is my 1st blog entry. Rizza has done so well keeping everyone informed and updated on our journey. 

We all come across forks in the road on our different journeys in life.

I met a cool guy, John (from Roseville) and his family…. Our first meeting was in the Robinson Family Lounge at UCSF Benioff’s Children Hospital with his parents and his mother in-law. We joined hands and prayed for our families and our daughters who were in the hospital. It’s been over a month since they took their daughter, Karina, home. 

We also met a lady (sorry, I forgot her name) from Afghanistan that lives in the Central Valley. Thinking about her journey only made us stronger. Her little boy, about 2 years old, has his own complications with his heart, but she also has another son, whom we did not meet, who has been at UCSF for heart related surgery. I started thinking about her journey, the miles she has traveled, the oceans she has crossed, the days she has spent at the hospital and away from her home. I thanked God; just think that if she was in her native country with the technology and medical advancements being 20 plus years behind, she would have lost both her boys.  I don’t know how long she was here in the PCICU (pediatric cardiac intensive care unit) but I do know it was a second more than she or any parent would want to be.

Recently Miles, a CHD baby born at 26 weeks, went home. He had been here since his birth in June of this year. The family is from San Diego and had only been living in their newly bought home for 3 months. Their stay at the hospital has been for over 23 weeks. Miles’ dad’s work was able to accommodate him and he worked from wherever he could find space.

Since Miles has gone to another hospital closer to home, a few more kids have come and gone.  We do not talk to everyone because we are all on a different journey and whether we do or don’t that is part of my path, our journey, but we do smile and keep positive energy around us. At this time Maia has been in the unit the longest, nothing to boast about, no credit needed, but keeping it positive and in a way it is cool. Some families stay here for what seems like a day or two, and some for a couple of weeks.

During all this time, Rizza and I have been lucky enough to go home every night and sleep in our bed. Once in a while we get free water, snacks and coffee from the Ronald McDonald House sponsored coffee cart. Others on their journey have had to seek housing at the Ronald McDonald House, like John, the woman from Afghanistan, Miles’ parents and the others that have come and gone. We are running the Hot Chocolate run to raise money and awareness, and because we have met and are meeting some nice people along the way that have to live away from home and this is our way of supporting them. The RMH 100% of their donations go toward the people the help out. 

When 1st asked to run I said "no", partly because Rizza does a lot of runs, partly because I have back and right ankle and leg issues, but then when she told me it was for the Ronald McDonald House I said "YES of course". Rizza will be doing the 15k and I, Gordon, will be doing the 5k. Sign up at http://www.hotchocolate15k.com/sanfrancisco/ . We are asking for donations and sponsors for the run. We will be making a T-shirt that will be for sale in the beginning of January, on the front will be Maia’s nickname “Mighty Maia” and on the back will be all the sponsors’ logo and or name. The Hot Chocolate run is your donation to the Ronald McDonald House. Donations to the Maia fund can be made via the Heart of Maia blog, http://heartofmaia.blogspot.com/, showing support tab. For sponsorship information please email Gordon at meadgr@yahoo.com.  

Friday, November 15, 2013

Little Changes...

This last week Maia has continued her slow and steady pace toward her recovery goals. Overall, she still has an uphill battle, but little by little she's been doing her part to get better. Her doctors are still sometimes hesitant to make any drastic changes, so we're all in agreement that the slow and gradual approach is the right way to go!

So within the last few days, Maia has been on what they consider "regular" formula (Enfamil). She had been on specialized formula with lower electrolytes, so that it was gentler on her kidneys. But she's made the transition to regular Enfamil formula and along with the vitamins, everyone can see what a difference it's making. The doctors and nurses have noticed that her wounds are healing much better now, since she's been getting the added calories and vitamins. Maia also had some stitches taken out from the exploratory laparotomy incision. Fortunately she slept through the whole experience, so hopefully she didn't feel a thing! But what's probably more noticeable to everyone is the chubbiness in her cheeks and also the double chin she's been sporting lately!
Maia showing off her chubby cheeks!

Maia also seems to have recovered from the bacterial infection from her breathing tube. Starting her early on antibiotics prevented anything serious from happening. She didn't even get a fever this time and they've already taken her off of the antibiotics. The doctors didn't want to keep her on them too long this time, for fear of her body becoming resistant to them and having them become ineffective. But Maia is showing no signs of any sort of complication from the infection... thank God!

About to get a kiss from big brother
Maia is also becoming more awake now. She's been sleeping a lot lately because they're slowly weaning her off of her pain meds. So day by day, she's been spending more time awake... which is nice for us because we love seeing her wide awake with her big dark brown eyes staring back at us! She's also back to her old ways... for her that means trying to grab and pull on her breathing tube again! So I think she'll be wearing her mittens more often now! We've also noticed that Maia's hair is growing longer and is starting to misbehave even more! Gordon tries to comb it everyday but many times her hair just does it's own thing!
Her "Pledge of Allegiance" pose on Veteran's Day
For the third week in a row, we didn't have our regular family meeting with Maia's team of doctors and nurses. This time it was because we weren't available because we had to be home early, so that Marcus and I could make rice krispy treats for his birthday, to share with his Kindergarten class
! So we were updated by Dr. Tabbutt, who didn't have much to say again... which is a good thing! Her main concern was whether or not to try to stop the peritoneal dialysis for 2 days and see how Maia reacts. She's been wanting to try this for the past week or so, but as I mentioned earlier, they've been hesitant to try anything too drastic because Maia has been doing very well lately! She said she's talked to the renal (kidney) doctors about it and they're all on board, it's just a matter of deciding when to do it. For right now they're thinking about trying this sometime next week, but of course nothing is ever set in stone so that could change.

Aside from our hospital life... Gordon and I are going to do a charity run called The Hot Chocolate Run San Francisco. It will be on Sunday, January 12, 2014 and benefits the local Ronald McDonald House of San Francisco. It's a great charity that creates, finds and supports programs that directly improve the health and well-being of children. During Maia's stay at UCSF, we've met several families who have stayed at the Ronald McDonald House. Housing is just one of the extremely important services they provide for families that come from miles away to get help for their kids who are being treated at UCSF. So we'd like to do our part in helping this great cause. I will be running the 15K (9.3 miles) and Gordon will be running the 5K (3.1 miles). We are also making shirts for anyone that would like to run with us, and we are looking for sponsors or donations to help make this happen. Anyone can participate by running either the 5K or the 15K. There are no age restrictions, so children can also participate. We predict it to be a cold and foggy morning, but we all get to drink some yummy hot chocolate after the run! Hope to see you there!

For more information click on the following link
 Hot Chocolate 15/5k San Francisco.


Friday, November 8, 2013

Slow and Steady...

Bye-bye sensor, hello forehead!
For the past 2 weeks, Maia has been doing pretty good, making little improvements in her recovery. The doctors and nurses are pleased to see her very stable and are sometimes hesitant to make any changes because she's doing good. Also, for the second week in a row, we haven't had a family meeting with her team of doctors and nurses, mainly because of scheduling conflicts... so Dr. Tabbutt, one of Maia's pediatric cardiologists has been keeping us updated on Maia's condition. Since she's been stable and her peritoneal dialysis is working effectively, and her Broviac is working nicely, there hasn't been too much to report on. The doctors are confident her oxygen saturation levels to her brain and head are good, so she no longer has to wear a sensor on her little forehead... now she can actually wear hats and beanies properly, and we can give her kisses on her forehead! Her urine output has been getting more consistent, so we know her kidneys have slowly started working again. The doctors have said they think she would pee more if it weren't for the dialysis, but taking her off of dialysis right now would be such a drastic change and too risky for a baby in her condition. So they're still trying to figure out a way to somehow wean her off slowly. She still has some extra fluid in her abdomen wall, which causes pressure in her lungs, so as her fluid content and tummy gets smaller from the dialysis, they are able to slowly lower her ventilator rate. But yesterday they noticed that Maia's white blood cell count had increased. So as a precaution, they started her on some antibiotics. They had found some bacteria on her breathing tube, similar to the last time that caused an infection. This time, they started her antibiotics early instead of waiting for an infection. Nothing yet has been confirmed as to what she might have, but we are all happy to see that Maia is not acting like a sick baby... just like big brother, Marcus, who doesn't know the meaning of "rest" and doesn't slow down at all when he's sick! She doesn't have a fever and her vitals are all good. The only thing that's changed is her secretions have increased, so they've had to suction her more and increase her vent rate. Other than that, she is still really alert as to what goes on around her. So while the doctors and nurses wait on the lab results, we're all keeping our fingers crossed and praying that this doesn't turn out to be anything serious!

Speaking of fingers, Maia got her splint yesterday! It's so tiny it's the cutest splint ever! It's made from neoprene so it's comfortable and won't irritate her sensitive skin. The occupational therapist checked both her hands but feels that only her left hand needs the splint. She said that Maia has good gripping and flexing strength on both hands but likes to keep her thumbs, the left one in particular in the tucked position. So wearing this splint should help her keep her thumb in the correct position... but of course I forgot to take a picture of it, so that will be on a future post!

Many have asked us "how do you guys do it?... how do you keep smiling?...." We can't really explain it, but for us it's a choice between being positive or being negative. But don't get me wrong, we do have our sad moments... but whenever happens, it's as if God purposely introduces us to another family to keep us in check and make us realize how good we really have it! There are other families out there who have been through so much more or are having a harder time than we are. For example, we are one of the fortunate ones that get to go home every night. Many come from miles away and don't go home for days, weeks, and sometimes months! So we always try to make the best out of our situation and not take things for granted. We continue to pray and have faith that this is where we're meant to be right now and know that God has a bigger and better plan for us. There's no time to think of the "what if's" or the "should've, would've, or could'ves." We do what we can and leave the rest to God. We are truly blessed and feel so grateful for everything we have.

Wearing her new "Maia" beanie!