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!

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.  

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.

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!

 

$4 Million and Counting!...

It's been a great week for Maia, as she continues to make baby steps in her recovery. The doctors have been slowly increasing her feeds of low calorie formula, which is easily digestible for her and hopefully soon she'll be switched to a higher calorie formula. She's also been taken off her TPN (total parenteral nutrition) since she can now tolerate more formula. They have also been weighing her more often now with the use of a bed scale and on Friday, she weighed in at 4.1 kg or 9 lbs. She's also been slowly weaned off of her  Fentanyl drip (pain medication). In the meantime, she's been put on a couple of other pain meds to avoid withdrawal. Maia seems to be doing fine with these changes. The doctors and nurses have been trying very hard to keep changes at a minimum since she's been doing so well lately. But Maia hasn't liked all the changes... they've started adding a multivitamin and some iron through her feeds and she's been spitting it up! The nurses somewhat expected it because the vitamins are not so gentle on the stomach, so we're hoping she'll get used to it because she really needs some good nutrition! They've also set up a consultation with an occupational therapist for Maia's hands, particularly her thumbs. She's developed the habit of tucking them inward, especially on her left hand where she's had some poor circulation. I had started to call them "shy thumbs" and didn't think it was much of a problem. They're hoping she can get some splints that hold her thumb in position. The nurses explained that if her thumbs get used to that tucked in position, she will have a harder time using them as she grows up, so it's better to do something about it now. So we're hoping these changes are small enough that it doesn't upset Maia too much! She's been doing better these last couple of weeks and we all want her to continue moving in the right direction! Everyone enjoyed Halloween week at the hospital, including big brother Marcus, and now it's time to move on into the month of November and start the month on a good note!

Maia celebrating her first Halloween

Maia staring at Marcus' big muscles!

Bills, bills, bills...

We've recently started receiving our first set of bills. Maia's been in the hospital for over 2 months now, so we've been wondering when they would start to come in. Then all of a sudden within the last few days, we've received a truckload of bills!! They are hard to understand and are very confusing. They are all Kaiser bills, and the first few are the bills regarding our referral to UCSF. When I called for help because I didn't understand how their billing worked, they too didn't understand and couldn't really help me! So we talked to our social worker who told us to talk with a financial counselor. The financial counselor told us not to pay anything just yet and to contact Kaiser to ask them what exactly we are getting billed for and why... in the middle of this conversation, she happened to mention that Maia's current running total is... $4,000,000! Gordon and I were shocked, but then again, we weren't... we had done some research before Maia was born, and the total for all 3 surgeries was around the $2 million mark. I don't think either of us expected it to be this big, considering Maia has only had the first of three surgeries, and is expected to be in the hospital for a while! We may have to win the lottery more than once! Ha ha! We know that's not what we are expected to pay, but our portion will add up fast and just hearing that amount is mind boggling.

Although we're pretty good about handling stress, that doesn't mean nothing stresses us out! One of the things that's been a source of stress has been Gordon's work... or should I say "old work?" He was recently let go from his job with no said reason, so we figured it's somehow related to Maia's condition since his overall job performance has always been at the top of the dealership even when he was working half days. But just like we've always dealt with things that come our way, we'll get through this. In the meantime, Gordon is more than happy to make the most of his free time by spending it with his baby girl! Who knows, it may even be a blessing in disguise! We know that God has a plan for all of us, so if this is where we're meant to be right now, then we'll continue to make the very best out of every situation! Please continue to keep us in your prayers... God is great!

We love staring into her big brown eyes!

Daddy combing Maia's hair