Friday, July 18, 2014

Ups and Down of the Past Month

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

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

Maia chillen at home

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

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

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

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

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

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

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

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

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

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

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

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

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

Dad, Gordon aka G

Tuesday, July 8, 2014

She's Baa-ack... (in the hospital)

June has been a whirlwind month for us! Obviously, blogging hasn't been a priority (sorry about that)... but I'll try my best to update!

Maia was officially discharged from the hospital on Monday, June 2, 2014. The first week was actually very busy with some of her follow up appts already scheduled. But in between those appts we were all loving the fact that she was home!

Maia... happy to be home!

We worked out a schedule where she eats during the day about every 4 hours, and we let her sleep through the night without a feeding. We also have a schedule for her meds which we give via g-tube. In the morning it's Lasix and Enalopril, then 1/2 baby aspirin and Prevacil. In the afternoon we give her iron and vitamin D. Then at night, her second dose of Lasix and Enalopril. Maia also has protein powder that we mix with her formula, Enfamil 20 for infants. She was also discharged on .5 Liter of oxygen, but she hates to wear her nasal cannula, so we've been giving her oxygen as needed, mostly at night when she sleeps. 

So fresh and so clean!

Maia loves being at home! She hardly ever cries and is very good at entertaining herself. She doesn't really like being on her back very much, so she learned how to roll to each side! She knew how to get to the halfway point but had trouble getting her hips and lower body to follow! She then figured out that if she kicked, her lower body had momentum to turn over too! It is so funny to watch! Maia also loves watching tv and playing with her exercise gym that has hanging toys she can pull. But she really loves interacting with everyone, especially big brother, Marcus. He helps out with whatever he can do. He even changed a diaper, his first and last one, he said! He also claims to have taught her how to arch her back and also how to make bubbles with her nose! But sometimes Marcus gets a little too close and Maia will punch and slap him! She lets him know that he's getting in her face and she doesn't like it at all!

Marcus changing his first diaper
Nice job, but he says it's his last diaper change!

Maia also enjoys the outdoors. So we take her on stroller rides whenever we get a chance. Fortunately, we live in an area where it's not too hot and not too cold... it's just right with a nice cool breeze! So it's perfect Maia weather! The sunlight can be a lil too much for her, so we got her some sunglasses that she doesn't seem to mind wearing. Plus they look so cute on her too!

Out and about at the grocery store
Ready to roll

Visiting their guardian angel, sister Marissa

One thing Maia doesn't like is her baths... except when we wash her hair! We couldn't submerge her until she was 6 weeks post op, so her baths mostly consisted of us pouring water over her, so it hasn't been very fun for her and she seems to really hate it.

Baths are overrated...

After being home for about 2 weeks, we noticed that Maia was starting to act differently. It was right after Father's Day when we noticed she seemed to breathe faster. So we put her oxygen on continuously even though she would fight us and take it off. Then the next few days after, she started getting discharge in her eyes. A couple of days it was bad where she couldn't open her eyes in the morning, so I called the advice nurse. Since Maia wasn't showing any other symptoms or signs, the nurse said it was most likely a blocked duct, and it would go away in a few days, and to just use a warm wet washcloth to clean her eyes. But her eyes didn't seem to get better. Then we noticed that Maia was sleeping a lot more than usual, and didn't want to play that much. She usually plays for about 2 hours before getting tired, but lately, she wanted to nap after only 15 mins of playtime. She also shied away from her bottle feedings, not wanting it at all. So I called her cardiologist,  Dr. Robertson, who scheduled an appt to see Maia. We didn't feel it was a true emergency, the 911 type, but we knew something wasn't right with Maia. The following day, I wasn't feeling so well myself! So now I started thinking that maybe I'm sick and I gave the virus to Maia... or maybe I caught something from her.

Eyes red and crusty... but still happy

So Gordon took Maia to her appt while I rested at home. She went from Dr. Robertson's office straight to the ER, then eventually the PCICU... good ol' 7 East! Apparently she had rhino virus, a typical cold virus that everyone gets. It was nice to see so many familiar faces, but then again, it really wasn't!! I kept telling everyone that this wasn't the reunion we were hoping for! As it turns out, Maia also has a collapsed lung to go along with the virus. So we knew right away that it would take weeks for her to recover, since heart babies have a more difficult time dealing with colds.

Loving the name sign!

Her sleeping beauty mask
It's very hard to see Maia in the hospital again. At home she was so happy and vibrant! Now she's sedated and paralyzed... and once again her tricky anatomy seems to complicate what's already complicated! For days there was no real change in her lungs. The Drs let us know that things typically get worse before they get better. They also let us know that Maia was bound to get sick sooner or later... there's no way to prevent it... the bottom line, kids get sick no matter how hard we try to protect them from everything! The Drs and nurses have reassured us that we did nothing wrong. We actually did everything right... because now is the time to try and treat her like a normal baby... to try and find the balance in our life, to be careful yet not be too careful. They were all so happy to know that Maia enjoyed being at home. Now that she's back in the hospital, it was time once again to celebrate another monthly birthday! Maia is now 10 months old and has spent each monthly birthday at the hospital, so this was nothing new... we joke that this was the real reason she got sick, she wanted to spend this monthly birthday at the hospital, it's what she's used to! But the goal is to bring her back home!

Get well kisses from big brother

Celebrated Maia's 10 month birthday with
churro cupcakes

A typical scene in Maia's room whenever
her oxygen sats dropped
Maia's current hospital stay has included many ups and downs. During her first few days, she was intubated and put on the ventilator to help her breathe and help her lungs. She was also put on some heart meds to regulate her blood pressure and help keep her oxygen saturation up. In those first few days, I was home and couldn't go to the hospital because I was still getting over my cold. It was during this time when her oxygen sats kept dipping lower and lower. They would eventually come back up, but only after some interventions by her Drs, nurses, and RTs. Such a scary thought to know her sats went as low into the teens I think, before slowly climbing back up to around the 50's. When I first came to see her, Maia's "normal" sat was around 60, but I was actually a lil bit surprised at how good she looked because I expected her to look blue! The nurse explained that Maia's body has adjusted to having lower sats, so that's why she didn't look blue. Over the next few days, they decided to try other things to help get her sats up, including putting her on an oscillator. It's a type of ventilator that literally shakes the body continuously so that the airway remains open. They were hoping this would make her gas exchange better and increase her oxygen sats. So they put Maia on her tummy and let her "shake" for a few hours.
Tummy time on the oscillating ventilator
It was actually kind of amusing! 
But after no significant improvement, they decided the best thing to do was to put her on the ECLS (extracorporeal life support) circuit. It's similar to the circuit Maia was on when she was a newborn and went into kidney failure. Since her heart is doing fine, this time she would only be on for lung support, to allow her lungs to rest. It also allows for her to be on lower vent settings. She was on this particular circuit for a couple of days before they switched her onto a newer ECLS circuit. This newer circuit is gentler on the blood, reduces the risks of clots and is the new and improved version of the older circuit. It also reduces the risk of necrosis, like when Maia's left fingers lost circulation and pretty much died. Fortunately, her fingers healed and only the tips came off. There's also a lesser chance of her getting jaundiced like before, since the tubing on this circuit is gentler on the blood cells and don't cause too much breakage of the cells. Before switching Maia to the newer circuit, they did a heart catherization to check her physiology and certain blood vessels. It turns out that a particular vessel seems to bypass the lungs and go straight to the heart, among other things they found. This doesn't really help out her collapsed lung situation, but it's good to know.

Back on the ECLS circuit

So Maia has been on the ECLS circuit for over a week now, but she's slowly improving. Her lungs are showing signs of improvement, little by little, each day. A few days ago, they changed her vent settings from volume-control to pressure-control and this seems to have helped. It was quite a display she had going last week with all various IV drips and pumps! All her meds from such a long time ago they had to put her back on... epinephrine, dopamine, milrinone, heparin... with the addition of antibiotics, her diuretics... not to forget her fentanyl for pain, her versed (anti-anxiety) for sedation, and vecuronium "vec" (muscle relaxer) to paralyze her. There's probably more, but I just can't remember them right now! Anyway, they've been able to wean Maia off of the heart meds so the focus has been on making sure she's sedated, paralyzed and comfortable. Once in a while Maia gets what they call a "vacation" from being paralyzed... they allow her meds to wear off and give her a chance to wake up a little bit. Usually, they allow her to move her fingers and toes, and also open her eyes. Not too much movement, but enough to let her wake up and give her a break from all the drugs. Once they see she's moving too much or that she's initiating her own breaths (seen on the vent), that's a sign that it's time for Maia to go night-night. With the help of diuretics, she has had great urine output, something that is always a concern. But she's been consistently peeing and is no longer as swollen as she was a week ago. In fact, Maia has been looking longer to everyone, as if she's grown taller during her time back in the hospital! Despite how sick she is, she still looks pretty good to us. It's sad that she can't be awake right now but we know it's for her own good. She seemed more irritated to be awake and strapped down, so sedated and paralyzed is probably better. Since she's been constantly sedated and is on the circuit, Maia also gets head ultrasounds each morning to make sure her brain is ok. Last week they had her hooked up to the EEG machine to monitor her brain waves, but they found nothing out of the ordinary.
Hooked up to the EEG machine
to monitor brain activity

The next step is still up in the air... her Drs are deciding whether it's better to keep her on the circuit with lower vent settings, or to take her off the circuit and just have her on higher vent settings. Once again, the Drs will be having ongoing discussions until they can all come to some sort of agreement about what to do. Until then... we wait patiently and continue to be by Maia's side as she recovers. Hopefully, it's only a matter of time before we'll all see her laugh and smile again....
Mighty Maia

Thank you all again for the love, support and prayers. We're all in this fight together and we are so blessed and grateful to have you all on the Mighty Maia Fight Team!