Monday, April 21, 2014

Closer to the Glenn...

It's the day after Easter... we began our Easter morning with a beautiful family hike (minus Maia of course), followed by church, some quality time with Miss Maia, then ended our Easter Sunday with a movie Marcus picked out, Heaven Is For Real. Now it's Monday. It's also the last day of antibiotics for Maia. For now, all that's left is a few more days of waiting until her next open heart surgery, the Glenn. We haven't been given an official date yet, but when I last checked with her Drs. (this morning), they said her cardiologists were still aiming for the end of this month. They didn't want to set a date just yet, not until her course of antibiotics had been completed. So as we quickly approach the end of April, we're starting to feel a little more anxious!!

Maia in her little Easter hat next to her big bunny

Group pic during our hike

Marcus posing with "Bambi" eating lunch

Looking out towards the Bay
Continuing the uphill hike

Realistically, we're still a long way from bringing Maia home... at least that's how it feels. Of course, we're much closer now compared to a few months ago! I think it's just that we don't want to get our hopes up too high. Maia is one of those babies that has never done things "by the book." She has pretty much been writing her own book, her own experience, her own story. It's been very hard to predict outcomes during her recovery and that hasn't changed! I would love for her to do things as expected, such as recover from the upcoming Glenn surgery in 2 weeks. We've been told the average recovery time from this 2nd stage surgery is usually 10 to 14 days... but we all know this is highly unlikely to happen with Maia. We've learned to double, and sometimes triple, the average recovery time because Maia likes to do things her own way!! We love her feistiness and determination. She is very strong-willed and stubborn, and knows what she wants and when she wants it. She also does things when she wants to, not when she's told to or when she's expected to... now that I think about it, this might be a problem as she gets older! But regardless of how long her recovery takes, we're behind her all the way. I feel like she's lead the way this whole time, and the rest of us, including her Drs, have had no other choice except to follow her lead!

Not expecting a surprise kiss from her big bunny friend!

Too busy watching some playoff basketball to crack a smile!

Today we also said our "happy" goodbyes to one of Maia's long time neighbors, Baby Morgan. She is about one month younger than Maia and has also spent too much time in the hospital. It was so nice to see her leave the hospital with her mom, and join her dad and big sister at home... now they're all together again. They'll continue to be in our prayers and we wish them good luck. We also hope we won't see them any time soon!... and if we do, we hope it's not in the hospital!! 

Last week Maia was cleared to have some tummy time! So lately, we've been spending more time down on the floor on her play mat. She seems very comfortable laying down on her tummy and has fallen asleep each time! As long as she has access to her right fingers for sucking, she's fine. She's also been trying to turn over while laying on her back, but her lower body is just to heavy! It's quite amusing to watch actually! Maia has also gotten better with her head control and is no longer the bobblehead she used to be! I was surprised when I put her on my lap and I just held onto her midsection. Before I had to also hold her head up because she just wasn't strong enough. Gordon was also able to lay down on the mat and put Maia on his chest. He did this all the time when Marcus was a baby and has been wanting to do it with Maia. Maia loved it so much she fell asleep! But I also think she inherited my ability to sleep anywhere! She has also increased her time on the Passy-Muir valve to 30 minutes, 3 times each day! She no longer cries all the time when she has the valve on. She usually whines a bit, but when she's distracted and entertained, she gets into her comfort zone and does just fine. She's even fallen asleep the last few times, which is a sign she's not having any difficulty breathing out of her nose and mouth, and is comfortable enough to sleep!

Maia asleep on daddy's chest

Loving her new hairstyle, pigtails!

Maia loves being tickled!

Tummy time
Last week was also Spring Break for Marcus. On his To Do List was ride BART and go to the movies. So one morning, we got dropped off at the BART station and took a BART train to San Francisco. We started our day getting some boba drinks and spent the entire morning at the Ferry Building... eating! From macaroons to garlic fries to milkshakes, we did an excellent job stuffing ourselves with some delicious food! We both had lots of fun and enjoyed a gorgeous day in the city. From there, we then took a Muni bus to the hospital to go spend some time with Maia. 

Boba time

Ready for some food at the Ferry Building!

Strawberry milkshake... yummy!
Posing by the Bay Bridge and the ferries

As I mentioned earlier, we ended our Easter by watching the movie Heaven Is For Real. Marcus had seen the trailer a few weeks ago and really wanted to see it. It seemed like a very serious and adult-like movie, but when I saw it was rated PG, we agreed to go see it with him. After seeing the trailer ourselves, we were also kind of intrigued and wanted to see it too. I hope I don't spoil it for anyone, but the little boy in the movie has a near-death experience and claims to have gone to heaven. His visit to heaven included hearing angels sing, talking with Jesus, and meeting his dad's grandpa, and also meeting his sister he never knew about. He said that it's just like here on earth (they wear regular clothes), except it's more beautiful and everyone in heaven is a child... it made me think of our baby girl, Marissa. She would've turned 2 years old this coming June. It made me wonder what she might look like. It also reminded me of how Marcus talks about seeing Marissa. He describes her as not being a baby anymore and that she doesn't always wear an angel outfit (white robe with wings). He says she usually wears a pink girly dress and that she has angel friends. He says Marissa spends a lot of time in the hospital with Maia, so he doesn't see her as often, but it's ok with him. These are all things that make us go hmmmm! Call us crazy but we do believe him! I'm just glad that I don't have these experiences myself because it would freak me out!! 

Maia, all smiles!

Day by day, little by little, Maia continues to grow and improve. She is now 13 lbs. 14 oz. We are so blessed and grateful for all that she's been able to overcome, and how each day she slowly gets stronger. Each of her little accomplishments are celebrated just as much as the big ones. As we waived goodbye to Baby Morgan this morning, one of the nurses turned to me and said "Maia's next!" Those two words made me so nervous!... it's almost our turn... she's almost home! It's all so exciting, so frightening, so nerve racking... all at the same time! For now, all we can do is continue to patiently wait, think positively, and keep praying.

Thank you all for patiently waiting with us and for keeping us in your thoughts and prayers.
God is good.

Romans 12:12
Rejoice in hope, be patient in tribulation, be constant in prayer.

Sunday, April 13, 2014

Days gone by

Days have gone by, months have past, miles driven and tears wiped away, one day soon you will be home.

To our new blog followers and to the ones that follow, just a reminder, I just write, so things may jump around and not totally sound right but again I am writing a blog not a book.

As Rizza mentioned in her last post, baby Aria has passed. She is now an angel, now Marissa's new friend. We went to pay our respects to her family on Friday. It was great to see them, so positive and happy that she is not suffering and in the place God wants her to be. Since we have been at the hospital, about 5 babies have passed away. A few times we just noticed a family crying and mourning in a room, then the next day the room is cleaned out and soon after a new family, a new baby arrives. Sometimes we do not even find out until later, like Aria on Facebook or Jordan on Instagram. God bless both your families.

We do want to thank, and send out a hug to the staff, nurses and Drs. at the hospital. They are people too and have to experience the loss of life, especially when you are helping to care for these beautiful babies to stay alive. They have feelings too, but the next day they have to come back to work and be professional and continue to work as if nothing had happened. Our hospital family is, and always will be in our hearts and thoughts even after Maia goes home. She has been taken care of, raised and kept alive by these great, wonderful, caring people.

Nurse Angela sent us this great pre Easter pic of Maia (yes she has permission)

With that in mind, Easter is just a week away. We have celebrated almost all the major holidays with Maia and whatever hospital staff was on duty. We also go out and celebrate outside of the hospital with friends and family, we just have to schedule everything around our first priority, Maia. As we said before, we will not go a day without seeing our baby girl. I am not complaining, I am reflecting on how no matter where you are, or who you are with, as long as you are celebrating and having a good time that is what it's about. 

We had our regular meeting this past Thursday and all went well. We talked about how Maia has to get over this infection and go through her antibiotics, which takes 14 days. After, if everything is good, including all her blood culture results, then we can get ready for the second surgery, the Glenn. As long as it has been it feels like it came up quick. To be talking about the Glenn, then thinking about her coming home, it is all surreal. We all are still working and hoping that she will come home without her trach, but if she does we're prepared, ready and confident we can do her trach care. 

UCSF Child Life Department gave us tickets to the Giants game for today. We had a great time, and loved that even parking was covered. Thank you.
A video of Marcus hitting the ball, this will be his last time as he is now too tall... A pic taken by me, of Marcus, mommy and Nino 
Marcus, mommy and Nino

For those who saw our video of our adventure with Maia, did you see the alternate ending?  For those who have not seen the video, watch it until the very end, you will love it.... 


Wednesday, April 9, 2014

Highs and Lows of the Week...

The last few days have been filled with ups and downs, highs and lows... it's the ebb and flow of the PCICU life! I'm not sure it's something we'll ever get used to, but it's a part of life and a part of our journey.

This past Sunday morning when I came to see Maia, I noticed one of the babies in the room across from Maia's had a frighteningly similar set up to what we experienced back in September. There in that room was the ECMO or ECLS machine (life support) and also equipment for dialysis, along with a ventilator and pumps with meds. It was quite eerie to see... then I come to find out that it was Baby Aria. We had met Aria and her parents back in September or October. Maia had already had her Norwood surgery and Aria was about to have hers. Her and her twin sister, Ava, were born a few weeks premature, so they both had spent some time in the NICU. Ava was heart healthy, but Aria was diagnosed with Tetralogy of Fallot, which is a combination of 4 heart defects. Aria would be taking a similar journey as Maia would with the 3 stage surgery treatment. During the next few months, we watched Aria recover, then go home, then come back to the PCICU after getting sick, then go home again, only to come back to the unit once again. We shared stories and exchanged updates with Aria's family and we followed them on Facebook. By Sunday evening, things didn't seem to look better for Aria, as more family came to see her. Before we left, her parents invited us to big brother's birthday on Monday, which would be held in one of the conference rooms down the hall. That night we left the hospital and grabbed a bite to eat before heading home. A few hours later I checked my email and Facebook and was both shocked and saddened to learn of Aria's passing... both Gordon and I felt so sad. There are no words to describe losing a child... I started having flashbacks of June 13, 2012. The day we had Marissa. The day we were blessed to spend 43 minutes with her. It's heartbreaking. It seems so long ago, yet it seems like it was just yesterday. Marcus even said a prayer for Baby Aria and said he will tell Marissa to look out for her. To learn our new friends we're experiencing what we experienced was so sad. But similar to us, they are strong in faith and family... they will be fine.

On Monday, it was a little bit weird to see the empty crib where we last saw Aria. So we turned our focus to Maia... it was time to have a little bit of fun! We decided to go for a wagon ride! She seemed to enjoy her last ride a few months ago, so we thought we'd do it again. We put her in a baby hospital gown and placed her in her boppy as she sat in the wagon. They temporarily replaced her trach collar with a smaller travel sized version that she wore last time too. It reminds Gordon of the little barrel rescue dogs wear around their neck! Maia seemed to have her poker face on, so it was hard to tell if she was enjoying herself. We made our way to the big fish tank in the family lounge where she stared at the fish for a while, before heading back to her room. We suctioned her then turned right around to go for round two, and back to the fish tank we went! By the time we got back to her room again, she had worked up quite a sweat, so we put her back in her crib to relax with her fan. I kept the hospital gown on her to see if she tolerated wearing clothes. I figure, she's a girl so she's going to have to like wearing clothes sooner or later! She lasted for about 3 hours before she started tugging on it, which was a hint for "take it off!" She then continued on with her day, napping and practiced breathing with her Passey-Muir valve. She's now doing three 15 minute sessions! She sometimes still seems uncomfortable, but as soon as she's distracted, she's good. So we usually have her sit up, so she can watch TV or have someone entertain her, like Marcus.
Wagon ride time!

Loving the fishies!
Maia in her happy face hospital gown

Relaxing in the wagon

We did have some drama last week when she came down with a fever. We later found out that it was caused by a bacterial infection in her Broviac line. This central line IV was put in back in October for long term use since she has limited access through her other veins. The unit had just celebrated reaching a record of 367 days of not having a central line infection!... leave it to Maia to end that streak! So after a few days of more tests and cultures, the results came back positive that something was growing in her Broviac. So the Drs. decided that the best thing to do is to take it out. Unfortunately, it's another surgical procedure. So yesterday she went down into the operating room and had it removed while under anesthesia. We gave her kisses before she left the room and when she got back, we were all there waiting for her. For now she will getting her antibiotics through a regular peripheral IV line.

Daddy-made toy from some old tubing

Kisses from big brother before going in for surgery
This week was filled with some excitement, which isn't always a good thing. But like we've said before, it's all part of the journey, part of our adventure. In the end, it all plays a part in molding us into who we are today. It's up to each individual to decide how life's circumstances will effect them. For us, we always try to see the positive side of things and how they can help better things for the future... it works best that way!

For the past few months, my brother has been working on a video, that journals our life with Maia. Here is the finished product! We hope you love it as much as we do! We encourage you to please share the video and share our story!


Thursday, April 3, 2014

Waiting for a Date...

Last we heard, Maia's team of Drs had agreed that her next heart surgery, the Glenn, would happen in about 4-6 weeks, when she was around 8 months old... it's been about 2 weeks since they mentioned this. This week we were informed that Maia would be presented again in the next cardiac conference on Tuesday. This means that the Drs and surgeons will most likely set a tentative date for her Glenn surgery!! They will also decide on any other pre-op procedures, if they feel she needs any. Having her presented at this conference is a big sign that the surgery is coming soon!

In the meantime, Maia has been working on some other things while waiting for her next heart surgery. Last week they downsized her trach from 4.0 to 3.5. The change in size seemed very miniscule, so it didn't bother Maia at all. Then a couple days later, Dr. Nielson, a pulmonologist (respiratory/lung Dr.) performed a bronchoscopy. This procedure allows the Dr. to look inside the airway by inserting a bronchoscope (thin, flexible tube) through Maia's nose, down her throat, and into her airways. This scope has a light and a camera to take pictures and video of the airway. So Maia was given some sedation that still allowed her to breathe on her own so that they could see what her upper airway looks like. They were hoping to remove her trach for a few seconds to see what happens, however, Maia had other plans! (As usual!) We were all able to see that her upper airway was clear and that the surrounding tissue was nice and not irritated despite all the suctioning that she's been needing. We were also able to see that there was room around her trach tube for some airflow... so we wondered why she wasn't able to make any noise. The Dr. tried to insert the scope further down, but Maia was so protective of her airway that she wouldn't allow the scope to go through! So they ended up giving her some anesthetic, propofol, that knocked her out completely. Only then were they able to check out the rest of her airway. Everything looked good, so the only explanation that made sense was that the tissue surrounding her airway might be collapsing, not allowing air to flow through it. Therefore, there's no air reaching her vocal cords to help make some noise. Maia's bronchoscopy results were looked over by an ENT (Ear, Nose, Throat Dr.), the same one that performed her tracheostomy (put in her trach tube)... he said the best way to strengthen her airway is to give her time to grow, and allow things to happen naturally. Otherwise, they would strengthen it by surgically adding some cartilage, which is something they do for older patients. So only time will tell....

Maia with the scope in her nose
Dr. Nielson performing bronchoscopy

Maia has also been exercising her vocal cords with the Passy-Muir valve. It's a one-way valve that is placed on outside opening of her trach tube and allows air to pass into the trach, but not out. When Maia exhales, the valve closes and forces air to flow around the trach tube and through the vocal cords, and out through her nose and mouth, allowing sounds to be made. The first time Maia tried this valve, she didn't like it at all! She built up so much pressure that she popped the valve off within seconds! But she's slowly getting used to it... she started out managing only about 2 minutes, and in just a few days, she is now able to keep the valve on for 20 minutes! It's the only time we get to hear her cry. She's getting used to it and is slowly starting to look more comfortable each time she has it on. Lately, she'll cry for the first few minutes, then she'll suck on her fingers. She also gets distracted when she watches TV, so she doesn't cry as much. Her occupational therapist wants to see how she swallows next, by giving her a wet pacifier soaked in some green food coloring. This way we can see what she does with the extra fluid in her mouth. We're not sure how long she will have her trach, so learning how to swallow during this waiting time would be a big plus!

Here is a video of us hearing Maia cry for the very first time!
(Click here to watch the full video on the Heart of Maia Facebook page)

There was also some excitement earlier this week... Maia was on the front page of the Bay Area section of the San Francisco Chronicle! They did a piece on her musical therapist, Oliver, that included Maia and a couple of other patients. It was a pretty big picture and when we showed Maia, she stared right at Oliver's face! We're so happy that Oliver is being recognized. He does so much, and means so much to the patients! He has such a gentle disposition about him and is able to connect with each patient, even young ones like Maia. In fact, the day Oliver came by with the Chronicle journalist, Maia had just finished her bronchoscopy and was still very much out of it. The Dr. had made sure Maia was breathing on her own and we had spent the last few minutes trying to wake her up. So we thought it was perfect timing that Oliver came by because Maia wasn't responding to mine or the nurse's pleas of "time to wake up!" With Oliver's first strum of his guitar and his gentle voice, Maia's eyes immediately opened!!! It was so magical it almost brought tears to my eyes! She was obviously still a bit groggy from the drugs, but it didn't take long for her to focus on Oliver's face and guitar... we're not sure what she loves more, the music or Oliver himself!... we'll call it a tie!

Check out the full article in the SF Chronicle and SF Gate (online) by Mike Kepka.
Music soothes body and spirit at children's hospital

Maia checking out her pic with Oliver in the SF Chronicle
Monday morning with Maia, Oliver, & Philz

So for now we patiently wait... again. Sounds horrible, doesn't it?! Of course things could be better and things could be worse. But I believe we are where we're meant to be and that God has a bigger plan. Hopefully next week we will have a surgery date to look forward to! For now we continue to enjoy the somewhat uneventful days that go by. The definition of uneventful is always a good thing where Maia's concerned! We've had our share of days and weeks filled with too much drama and excitement! It's so nice to relax and enjoy our time with Maia... it makes us realize and appreciate just how blessed we truly are!