Wednesday, January 29, 2014

5 Months Old!...

Maia is 5 months old today! Hard to believe it sometimes since she's been in the hospital the whole time. But she really is growing and learning new things! The last few days have been filled with many discussions about what to do next, and each day I think the big picture looks a little bit clearer. All of Maia's doctors are slowly coming together to figure out the next plan of action....

Maia with another crazy hair do

As we've mentioned before, Maia is due for her second open heart surgery, the Glenn. For most HLHS babies, this happens at around 3 to 6 months old. Since Maia went into kidney failure while recovering from her first surgery, the Norwood, they've wanted to wait on having the next surgery, and give her time to grow while also giving the kidneys more time to recover. She had an MRI last Tuesday and the cardiologists were happy with the results. She was presented at a conference yesterday to discuss her condition and recovery, and also her next surgery. Since they're all pleased with what the MRI showed, they want to schedule her for a heart catherization, which will measure the pressure and blood flow in the heart's chambers and also the major arteries. This procedure is routine for pre-Glenn patients and it's normally not a big deal for heart babies, but since Maia has kidney issues, it becomes a concern because contrast dye is used. Her kidneys will have to process this dye. This leads us to our next issue of concern, her dialysis catheter. This catheter was surgically put in a few days before Christmas. We are hoping she will no longer need any dialysis and the catheter will not be used. Since Maia had a very difficult time recovering from her first surgery, her doctors wanted to put in this long term catheter just in case she needs dialysis when recovering from the second surgery. However, this catheter has had some problems recently and nobody knows for sure if it works! It was being flushed daily for about 3 weeks until a clot was removed about 2 weeks ago. Since then it hasn't been flushed or tested. So for now, all the doctors are in agreement that the catheter should come out... it's just a matter of "when."

Snack time!

So after the Drs' conference, Dr. Sanjeev Datar, one of the critical care specialists, came by to talk to us and give us an update about what was discussed. He said they are going to schedule Maia for the heart catherization sometime in the next 2 weeks. Depending on those results, they will then schedule her for the Glenn surgery. Since Maia's kidneys will need to process the contrast dye that's used for the catherization, they will look at this procedure as sort of a stress test, to see how her kidneys respond. Depending on how far out her surgery is scheduled will determine when they might remove the dialysis catheter, if she doesn't need it. If after the heart catherization, they find that she needs to be put back on dialysis (to help process the dye), they will use the catheter (if it works) or replace it with a new one again. If her kidneys respond well and she doesn't need dialysis, and the Glenn is scheduled within a few weeks, they might choose to leave it in until after surgery, just in case she needs it. If the Glenn is scheduled for a few months later, then the risk for a catheter infection increases, so they might choose to remove it sooner, after the heart catherization. Maia has also been put back on continuous feeds. Since making the change to bolus feeds (feeding for 2 hours then resting for 30 mins before another 2 hour long feeding), she's been throwing up regularly. A few days after being back on continuous feeds, she has thrown up less, but was still throwing up. So they've been giving her Reglan, which helps food move through the digestive tract... and so far it's been working, no throw ups in the last 3 days. The focus now has shifted to weaning her off the vent so on Monday, they started her sprinting exercises again, to help build up her chest wall muscles and her breathing coordination. She's been sprinting 3 times a day, with each sprinting session lasting for 2 hours. She's been doing so good during these exercises that she's been sleeping through them! Her respiratory therapist said this is a good sign because it means she's having no problems breathing on her own. If she was having any difficulty, she would be breathing hard, struggling uncomfortably, and she wouldn't be able to sleep. So hopefully she continues to do well with these sprints. The goal is to have her off the ventilator before the next surgery. The Glenn surgery involves pressure changes in the heart and arteries, so being on the ventilator will have a negative effect on the surgery's result. So the Drs. are hoping she will continue to grow and gain weight, while continuing to practice breathing on her own. It becomes a balancing act, since they don't want her to gain weight and grow too fast, because this might cause some breathing difficulties, and interfere with weaning her off the vent. So they've been weighing her twice a week and watching her growth very carefully. At 5 months old, she weighs in at 12 lbs. 2 oz. (5.5 kg). I think healthy babies her age weigh around 15 lbs, so she's slowly getting there, especially when you consider the fact they had to shrink her down to get her chest closed (for the second time) at 3 weeks old. It's all quite confusing, with a lot of "if's, and's, or but's" involved!... of course this may all change since with Maia, many things don't go as planned! She seems to dictate whatever she can, which changes the course of her recovery!

Mommy & Maia

As for the room situation... "ask and you shall receive." Since Maia cannot talk, we did the asking for her. Although we discussed it at our last family meeting, I don't think Dr. Patrick was convinced that our reasons for wanting Maia's old room back were sufficient enough. But many of Maia's nurses understood that we just want the best for Maia and were on our side, including Cathy, the nurse manager. So they all helped make it happen Sunday night... and when I came in on Monday for our daily visit, Maia was back in her old room and everyone noticed an immediate change! She was no longer hot and sweaty, and she was so relaxed, she slept for most of the day! We felt the cool breeze coming from the vent above her crib and knew that it helped keep her cool. We first thought it might be a bad thing and mentioned it at a meeting about 2 months ago. But ever since Maia changed rooms, she's had 2 fevers and was constantly sweaty. Now that she's back under her cool breeze, she's been doing great! What we first thought could be something negative, turned out to be a positive thing!

As for life away from the hospital, I celebrated my birthday this past Thursday. Gordon and I went to The Slanted Door in San Francisco for dinner. We've heard so many good things about this restaurant, so we were both hungry and excited. It was very crowded, so I'm glad I made reservations! We also had a gift certificate from our Brooklyn friends, Albert & Sophia... Thank you! So we ordered a lil bit of everything! It was a nice experience, but I don't think it lived up to the hype like we expected. Gordon is extremely picky when it comes to food, so he thought it was just ok... it was a bit pricey, but then again, its SF, so I'm sure we paid for the view also! Then I came home to a great big birthday poster made by the one and only, Marcus! It also came with some hugs and kisses! He worked really hard on it and it will probably remain hanging on the wall for a very long time!

My birthday poster by Marcus

So this past week was filled with many positive things. Maia continues to make progress in the right direction and she has even started to smile!!! However, right now she seems to be very picky about who she smiles at! So far she's smiled at Daddy, a couple of nurses, and her physical therapist... I'm eagerly waiting for my smile! Many discussions have been made and there are more to come regarding the next steps to take. By now we're pretty much used to the all the changes! We think it's due to a combination of Maia's stubbornness and also the trial and error methods the Drs. use to figure things out, since Maia is in "uncharted territory" and all her Drs. are hoping not to rock her boat too much since she's been nice and stable lately. She really is a miracle and amazes everyone. Her Drs. have already mentioned to us that they'll be writing a (medical) journal about her because she is the only baby with HLHS & kidney failure, that has made it this far... and she's not done yet! So we're all anxious and excited for her to take the next steps in her recovery.
Maia's sweet smile!

Jeremiah 29:11

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

Sunday, January 26, 2014

Baby steps in a new shoe size

Last week we were on the 6th floor and then moved back up to the 7th, thank God. Now we are in a smaller, darker (less sunlight), temperature hot room.  During this week's meeting we let them know that we do feel that the front room is better for Maia's healing and growth. She runs hot, like me, just about every day, rain or shine I have been to Maia's temporary home in shorts and t-shirt. It is hard to see her laying there all sweaty, hands and feet just wet with sweat. We did discuss the cons in the room she is in and the pros of being in her old room. I had concerns about the venting in her room and I feel that Dr. Patrick took it the wrong way. My concern has always been for Maia. In her old room when I sat in the chair closest to the sink, I would be in the vent's path, and on a couple occasions, myself and nurse Janet's allergies just went crazy. My concern was if it is causing myself and Janet to start sneezing, coughing, and have runny noses and eyes, what could it be doing to Maia? Have the vents been checked, is there a filter, when is that last time it was cleaned? While being in uncharted territory regarding Maia's recovery and prognosis, I was thinking out of the box on what the possible causes could be to some of her unexplained conditions, like the reddening of her stomach, and some fevers. Now that Maia has been away from that room, she has seemed more sweaty and has had two fevers since the move. We think she may have been accustomed to that vent's breeze and may have actually benefited from it. Nurse Marie also mentioned that Maia's old room might be better because the window gave Maia a sense of day and night, since the room had a lot of natural light. So we're hoping to get that room back since it's where Maia's been the longest and it's what she's used to.

Tuesday the 28th,  UCSF cardiologists and other specialists from around the country will be discussing Maia's MRI results from the pictures of  her heart and chest, to determine when the best time for her next surgery, the Glenn (or Hemi-Fontan) procedure may be performed. We are so thankful that Maia has made it this far, after what we call being counted out so many times. In less then a week Maia will be 5 months old, her journey has been a second by second fight to be alive, to breathe, to be able to grow, to know that her name is Maia, Might Maia. Now almost 12 lbs, we continue to take baby steps in a new shoe size. We are hoping that they come back with positive results. Maia has been through so so much. Think positive always, but we do not want to get our hopes up to high. We're praying and hoping that the results from the meeting come back with them considering or even thinking to set a date for the 2nd heart surgery the Glenn.

With the first surgery being the most critical of the 3 surgeries, we are glad it's over and done with. Maia's kidney failure is why the recovery has been so challenging. It's why we're currently the family with the longest stay to date in the PCICU (Pediatric Cardiac Intensive Care Unit). The 2nd surgery, the Glenn, is not as complex or risky. Her body temperature is not dropped, her heart is not stopped, and it is not as long of a surgery. Writing this does not sound too severe, but all that was done to a 4 day old baby, baby Maia. If we do get a thumbs up for the Glenn, whether it is 2, 3 or 4 months out, it is that much closer to Maia's homecoming. We'll be able hold her, without wires and tubes in and out of her body. A time for her scars to heal, a time for her to see what her real home looks like, the walls, the ceiling, her room. We do not care about the drive back and forth everyday, as I would drive a million miles for Maia and back, if need be.

Today 1/26/2014 we're still in the hot room in the back. We were told we will be moving to the room that Maia is most comfortable in, so she can continue her healing and recovery. We're so happy that she won't have to endure having excess sweat on her little body, as that must be so annoying for her, it would be for anyone. Today was great. Maia was smiling and laughing her silent laugh, as she does not make any sounds yet. No crying out loud, no noises from her little mouth. We do see her silent cry, but it is just like Marcus when he was Maia's age, a 5 second cry is all they do. Rizza and I spent all day with Maia today, when Maia fell asleep, we took a walk and went exploring for a place to eat lunch. We ended up at a Thai restaurant and it was good, impressive. Walked off the lunch as it was pretty much a slight uphill walk all the way back. Came back to a still sleeping baby, got on our smart phone and iPad and hung out till she woke up. Spent the next couple hours with her playing, making faces, kissing her, and talking to her till it was time to leave. The hours go by so fast. We want to spend more and more time with her, but we know we have a big little boy at home, who equally needs are attention.

Family pic
yummy fingers
Big Brother Marcus n Maia

Sunday, January 19, 2014

Moving Around...

This past week we finally resumed our meetings with Maia's Drs. We also had a change of scenery for a few days, as we were moved to another floor into the PICU (Pediatric Intensive Care Unit). Other than that, I'm happy to report it was somewhat of a boring and uneventful week!... just the way we like it!

Maia looking worried about her room situation
This past Wednesday, we were told by Cathy, the nurse manager, that Maia would be temporarily moving down to the PICU. There was an overflow of cardiac patients and what usually happens is that the most stable patients are moved to the other unit to make room for "sicker" kids. She said during rounds, it was discussed and all the Drs and nurses agreed that Maia was the most stable baby right now. It was truly a strange thing to hear! She said even the Drs found it hard to believe at first, considering how sick Maia was about 2 to 3 months ago. Unfortunately, her reward for being the most stable was to move down to another place... a shared area with less space and privacy. Not really a big deal, it was just a big change for us since we were used to our own private room with a TV and a big window. So when we came to see Maia on Thursday, she was already in her new room. Marcus desperately tried to maintain some privacy by closing the curtains as much as possible, but it really didn't work! It was pretty much one big room with curtains separating the patients. Maia seemed fussy at times, but didn't seem to let her new surroundings bother her too much. She was very hot and sweaty so they got her a little fan to cool her down. I don't think we realized how nice it was to have our own room until we didn't have one anymore! It reminded me of when we were put in a triage room after I gave birth. It was a tiny room with thin, accordion walls. We could hear everything going on next door to us, including when the girl next door was having contractions! This time, it was all the other beeping machines from the other patients, and all the noise we normally didn't hear from the other patients. Since there were no tv's, it seemed like everyone was either on a phone, tablet, some sort of gaming device, or just sleeping. One patient was a girl about 5 years old and when it was time for her meds or time to draw blood, she would scream "leave me alone, get away from me!" at the top of her lungs! I tried not to pay attention, but it was hard not to hear. Fortunately, Maia slept through it all! We would joke around with the nurses that Maia might feel the need to cause some drama, just so she could move back up to the PCICU (Pediatric Cardiac Intensive Care Unit) and have her own room again! Some of her nurses agreed that upstairs in her own room is better. But it really wasn't a big deal, except that Maia ended up getting a low fever! So maybe that was her way of telling us that she'd rather have her own room! So on Saturday night they moved Maia back up to her own room in the PCICU. It wasn't her old room, but it was a room! It was what she was used to, what we were used to. I think we're spoiled in that way!

"I want my own room" look

So this past week, we were able to get together for a meeting. However, it ended up more like a little tea party... it was me, the social worker, the nurse manager, and one of Maia's cardiologists... it was an all girls meeting! Since there hasn't been too much going on with Maia, the focus was mainly on what lies ahead for her. As of right now, they're all waiting to see what her MRI will show. Dr. Robertson, the cardiologist, explained that they're looking to see if she's outgrown the changes made from her Norwood, the first surgery. Depending on how it looks, this will give them an idea of how long Maia can wait until her next heart surgery, the Glenn, which is the 2nd of 3 surgeries. If they feel she needs to have the surgery sooner rather than later, she will most likely have it sometime in late February or March, when she will be around 6 months old. For now, they're all pleased with the way her heart has been functioning... good blood pressure, nice squeezing ability. We also discussed the changes in Maia since her tracheostomy. She's had improved hand-eye coordination, she's discovered her fingers and hand, and they've been able to decrease her vent settings to "extubatable" settings. But before even thinking about extubating, they want to focus on other things like her bolus feeding, along with continuing her sprint exercises, which will help the extubating process. Ideally, they'd like for Maia to be off the ventilator before the next surgery. We also discussed flu shots for family members and also Maia, however, she's still too young to get one. We've all gotten our flu shots, so I'm hoping that helps to prevent Maia or anyone else from getting the flu. They said in years past when the flu season has gotten really bad, the Drs have decided not to allow any visitors under the age of 16. But so far, it hasn't been that bad this year and we're all hoping it stays that way. Also during the meeting, once again the phrase "going home" was mentioned... nothing in detail, but sentences starting with "when you go home" or "when she goes home" made me a little nervous! I'm glad she's doing well enough to use those words, but we'd rather she stay in the hospital a little longer if it means weaning her off of some machines or meds. We've talked to one of the other parents in the unit, whose baby girl has been back twice after being discharged in November. He says its very different at home when there's no machines telling you something might be wrong. So we have some mixed feelings about going home... it can be both a good thing and a bad thing!

On Friday, Maia was supposed to have her MRI, but it was rescheduled for Tuesday morning. She will be given meds to paralyze and sedate her, making it easier for the technician to get a better picture. They're not sure how long the MRI will take but she will most likely be asleep the rest of the day. The results will be available a few days after, so the Drs will probably discuss it with us at the next meeting.

Having a crazy hair day

We as parents are continuing to learn and do more hands on care with Maia. I'm getting used to suctioning her, but Gordon is still a little nervous about doing things! He suctioned Maia for the first time today while I helped out with changing her trach ties. I didn't think I was ready and wanted to watch them do it today, but they insisted I try, so I did. It wasn't bad at all and Maia was very cooperative... she fell asleep! The times I watched before, Maia tends to squirm and move around a lot, making it difficult sometimes, but today she was more relaxed. The other day, I asked if they had a doll we could practice on, and they did, so we've been practicing on the doll. But it's different on the doll since it doesn't move at all and just lays there! Even Marcus has been using the doll to practice suctioning! However, he really wants to practice changing diapers, but only on the doll. I think he's still a bit grossed out by what he'll find in the dirty diapers! But overall, Marcus loves being a big brother to Maia. Today he sat in the crib with her and got the chance to brush her hair, be Maia's pacifier holder, and play with her feet! He was loving Maia's little feet and couldn't stop playing with them! It was very adorable to watch.
Daddy pretending the trach came out!

Practicing changing the trach ties

Marcus playing with Maia's feet
Loving Maia's feet
Marcus multi-tasking

So we're hoping the uneventful days and weeks continue and that Maia keeps on taking her baby steps and making the necessary improvements. It's still hard to believe that the Drs and nurses considered labeling her the most stable patient! She's come such a long way and has overcome so much... yet we still have such a long road ahead of us! So we continue to take things one day at a time, otherwise it can get pretty overwhelming! The bad part is that we tend to lose track of time very easily... "what day is it today?" is a question that's asked at least 5 times every day for us! Maia was born at the end of August and we've already celebrated several holidays with her at the hospital, along with her monthly birthdays. So time is really flying by! But we're all so thankful that Maia is here with us and getting stronger every day. We truly believe that "it takes a village to raise a child" and in Maia's case it really is a team of Drs, nurses, therapists... and of course her team of supporters, from family and friends, and to those that are new to our story... all the prayers, kind words, and caring thoughts, are all felt by Maia and those that care for her... we can't thank you all enough!

We would also like to thank those that bought Mighty Maia shirts. Thank you all so much for showing your support and wearing your shirts! Our adventure has just begun so we hope all of you will join Mighty Maia's Fight Team and continue showing your love and support! Thank you.


Tuesday, January 14, 2014

Just Thankful

Another post by Daddy

On Thursday, Aimee, John's sister (family in a previous post that our 1st meeting we joined hands and prayed) dropped by the hospital to say hi to us. I am so glad it was on our days when we go in the afternoon and it all worked out and she was able to see Maia, and we were able to say bye to her before she went back on her Missionary to Papua New Guinea in two weeks. I really have a warm spot in my soul for her, she has devoted this time of her life to spread the word of God. To go to a place and not have the luxuries we have. One thing she told me is that her local store was a 1/2hr boat ride each way. A week or two ago (again don't quote us on time because we do live day by day with Maia and lose track) we received a hand written letter from her, yes hand written, not a card, not an email... it made it more meaningful.) Thank you Aimee, thank you for stopping by, thank you for the prayers, thank you for thinking of us and thank you for everything, Gordon, Rizza, Marcus, Marissa and Maia. God bless you on your journeys.

Marcus has been really involved with Maia and he wants to go everyday. When he is at Maia's temporary home, 1st thing he does is of course hand sanitize, then he climbs up on her crib and starts talking to her, sings to her and rubs his favorite spot on the right side of her belly. He will ask me to pick him so he can kiss her. It has not always been that easy. From time to time his "only child syndrome" was present. But with time, that ended and he is the most loving big brother to Maia. He even has a picture that he made in his room. --->> He prays for her to heal and to come home, at the same time he knows that she is in the best of care with all the staff at UCSF. He will sing, dance and walk around with the nurses from time to time and that is his way of saying thank you. We thank God that he has been able to deal with everything going on and is a very mature little adult, even know he is just a little kid.

Post Run

Morning after the Hot Chocolate Run, SF. This was my 1st 5K in over 10 years and I am ecstatic that I did it. I accomplished a run against many odds, bad back, sciatica, still recovering from broken ankle and leg, the cold, and getting up so darn early. My reasons for running besides getting out of a shape and getting into shape, was for Maia, and for the families that are from out of town and have had to stay at the Ronald McDonald House SF.  Many people that ran the race ran just to run and never had to experience or have talked to families that had to use their services. Such as the families that I mentioned before, John, the family from Afghanistan and Baby Miles and his family. The Ronald McDonald House is a non-profit that actually gives to the people and not to the CEO's. We see the little box every time were in the drive-thru and we never knew what they really did until we were at UCSF. Next time please drop your change in the box, it really does go to people that need a little help.

I do want to thank everyone for the donations, that have bought shirts, prayed, given us pats on the back, words of encouragement, everything that you all have done, for all the people that follow our adventure. Thank you for sharing our story on your Facebook, Instagram and all forms of social media. I want to thank you all including, my brother in-law Rommel, my wife Rizza and God for keeping me strong and positive.

We want to thank all our sponsors at the Hot Chocolate Run SF


Monday, January 13, 2014

Some Things To Look Forward To...

For the past few weeks, we haven't had our usual family meeting, mainly because of the holidays. This past Thursday our meeting was cancelled due to a mock code in the PCICU, where almost all Drs and nurses participated. They went over the worst possible scenarios using a robot like doll, about the size of Maia, and simulated real life emergencies. It was very intense and interesting to watch, and good practice for everyone! It reminded us of the times when Maia shut down the entire unit due to all types of procedures that she needed done. We would walk in to see her room full of masked and gowned Drs and nurses and it would be hours before we'd be able to see her! Also, Judith, our social worker who's been the main facilitator of our meetings has been out sick, so it's been a little difficult to get everyone together. So on Friday, I actually got the chance to talk to three Drs (2 ICU attendings and 1 cardiologist) who all updated me on Maia's condition. 

All Maia's Drs are pleased to see her doing well, with no major issues and concerns right now. They've decided to go ahead and make some changes, in hopes that she'll continue to take baby steps in the right direction. She has been completely weaned off of her pain meds and is showing no signs of withdrawal. She spiked a low grade fever last week, and after some Tylenol, the fever was gone. She was put on antibiotics for one day and that took care of the recurring infection from her breathing/trach tube. They've also started her on bolus feedings, instead of having her on continuous feeds, since they felt her stomach had gotten smaller and she might tolerate the feeding change better. For Maia, bolus feedings mean feeding her at a faster rate for a certain amount of time, then stopping, then feeding her again. It somewhat simulates a normal healthy baby feeding every few hours. So they changed her feeding tube from an NJ (naseojejunal- tube goes past the stomach into the jejunum), back to an NG (nasogastric- tube goes directly into the stomach). The purpose of this is to eventually have her transition to feeding from a bottle. So in the meantime, the occupational therapist has set up some "cheeky" execises for us to help Maia's mouth and sucking coordination and also her sucking ability. But so far, so good... she has tolerated the change to bolus feedings, taking her fortified breastmilk & formula cocktail every 2-1/2 hours then getting about a 30 minute break before her next feeding. She has spit up a couple of times, which was expected, but nothing to be alarmed about. 

The Drs also scheduled an MRI later this week to get a better look at Maia's heart. They said the routine exam before the Glenn (2nd stage heart surgery), is for a heart catherization. However, this involves inserting a dye into the body for more contrast. They've chosen not to do this mainly because Maia's kidneys would have to process the dye and they don't want to put any added stress on her kidneys. So instead, they are following the new protocol at Boston Children's Hospital, the top ranked pediatric hospital for cardiology. At Boston, they have now started to do MRIs instead of heart catherizations for babies and kids as a pre-Glenn procedure. So Maia is tentatively scheduled for her MRI on Thursday this week. Unfortunately, she will have to be sedated again to have this done. This MRI will give the Drs a better look at her heart, as opposed to the regular monthly echocardiograms she's been getting. They'll be able to get a more detailed look at how her heart and the surrounding vessels are doing, and if she's beginning to outgrow the changes done from her first heart surgery. The hope is that everything is working well and that they'll be able to postpone her Glenn surgery for a few months. Most HLHS babies are ready for their Glenn at around 4 to 6 months old. Maia is already 4-1/2 months old so they are hoping to hold off on the next open heart surgery, to give her kidneys more time to recover, and for Maia to be able to grow more and get stronger.

 The nurses have also encouraged us to become more involved in Maia's care, because eventually we'll have to do some of these things at home. First we watched them change her trach ties, which is changed daily. Then we watched them change her trach tube, which is changed weekly. It looked extremely difficult! It's a minimum 2 person job and with Maia not having much of a neck right now, it makes it very tough! So we told the nurses that we'll be watching for now! I also got the chance to suction her by myself. It was pretty easy, just a little uncomfortable because it causes her to cough, which is a good thing! I'm actually ok with doing it because it's simple enough for me and doesn't seem to cause Maia any pain! So I guess I've been somewhat promoted to doing more than just diaper changes! We also got the chance to shampoo her hair! It was very exciting and fun for us!... and Maia loves it! So now we can look forward to being more hands on with her.


I was looking back at some older pics of Maia from earlier blog posts... and she has really grown!!! I think sometimes it's harder for me to notice since I see her every day, so looking at her older pics, I realize and can see how much she's overcome and how much she's changed! Her little body has been through so much but throughout her recovery, she's had the same look in her eyes... her fighting spirit has always been there and has never wavered! It's truly amazing and miraculous to see her timeline of pics and see the progression in her recovery. I think I'm going to see if I can put together a little slideshow of her pics... a little project for me to work on! Every day is a gift from God and we are not taking anything for granted! Both our little girls, Maia and big sister Marissa, have taught us to live in the moment and make the best out of every situation!... Please continue to pray for her, as we are all so grateful for everyone's prayers and the show of support we've received from everyone! All the positive thoughts and kind words are deeply felt and appreciated by both our family and Maia herself! Thank you again for riding along and taking this adventure with us, and we welcome those who've just joined the ride! 


Thursday, January 9, 2014

Hello 2014...

For us, 2013 ended quite nicely... we got to hold Maia and spend some time with family, what more could we ask for, right? It was a great ending to a great year! So now we're on to 2014!

Marcus is back in school and also back to his regular schedule of Taekwondo and Tuesday/Thursday hospital visits. For us that also means trying to get back to our regular schedule... no more sleeping in! Next up for us is the San Francisco Hot Chocolate Run on Sunday, January 12. I was planning on running the 15K but I'm now running the 5K. I'm a little disappointed that I didn't take the time to train properly... I know that I could probably still run it, even without training for it, but my body isn't ready yet and I don't really feel like going through a painful recovery! Not to mention my current weight and running pace is not where I want it to be! Plus, this is just the first of many runs planned for 2014, so running the 5K will be like a warm up! We're also all very excited to be running with our "Mighty Maia" shirts! I'm hoping for some decent weather, but then I remembered the run is in San Francisco! So I'm expecting a combination of fog and drizzle, with temps probably around 45 to 50 degrees. For those not able to participate in the run, don't worry, you can show your support by purchasing any of our Maia shirts... just click on the Mighty Maia Support Shirts tab, view the shirts, and order!

Marcus sharing his resolutions with Maia
Maia representing "West Side"

Maia began her 2014 just like she ended her 2013... with her fighting spirit! She continues taking baby steps in her recovery. Today her vent settings were lowered once again as the Drs. continue to slowly wean her off the ventilator. As of yesterday, Maia has also been weaned off of her pain meds, Ativan and methadone. She continues to be alert and active, sucking her fingers constantly when she's not sucking on her pacifier! Most of the nurses are surprised that she loves to suck, especially since she had the breathing tube in her mouth for so long. They said that most babies her age develop an aversion to anything that comes close to their mouth. But not Maia! It seems like she'll suck on anything! We let her suck on her right hand, which is her good hand. She's tried at times to suck on her left hand, but we'll quickly put a mitten on it, or the nurses will turn her to her right side, so she'll have easy access to her right hand. For about the past month, we've been waiting for the tips of Maia's middle and index fingers to come off! These black tips are the last of her injured finger tips. The others have already fallen off and the fingertips have healed nicely. These last 2 fingertips look like they're hanging on for dear life! I just hope when they come off, I won't be there! Witnessing one come off was enough trauma for me!

Today, Gordon went and got his tattoo done, by his longtime friend and brother from another mother, Abraham Ortega, at Death Before Dishonor in San Jose... a dedication to our baby girl, Marissa, who passed away on June 13, 2012. It says "Marissa Grace" and has the date 6-13-12, along with the Roman numerals MMDLXXX, which is 2580, the number of seconds that she lived. I would also like to one day get my own memorial tattoo of Marissa, but I haven't quite decided on a design or a place for the tattoo! So I'm really in no hurry to get one done since it's a permanent thing that I'll have to live with!

So 2014 is off to a good start for us!... there really isn't too much to complain about, and if there is, well, it's probably not that important anyway! I normally don't make any resolutions and if I do, it's not to make any! Regardless of what time or place we're at in life, we should always try to keep things simple, and just enjoy today.