Wednesday, March 19, 2014

Moving in the Right Direction...

Maia is almost 7 months old! It's still hard to believe that she's been in the hospital her entire life, and that we've been driving to the hospital every single day. Last week on my way to see Maia, I allowed myself to imagine what it would be like to have her home... to not have to make the drive to UCSF. If felt really weird! Our bodies seem to automatically get up and do routine things, whatever they may be. For us, going to the hospital is our normal way of life. But one day, she'll be home....

Little Miss Maia

The last month or so has gone by fast. Although not much has changed in terms of Maia's prognosis, she continues to take the necessary steps in her recovery. Her feeding issues were somewhat solved when we all decided that a G tube (gastrostomy tube) would be best for Maia. It took some time to decide this, but it wasn't a rushed decision, like when we were first approached about it. They first decided to change her NJ tube back to NG, so that the feeding tube went directly into her stomach instead of the lower intestine (jejunum). After about a week of good results and not much throwing up, the Drs decided that she tolerated feeds in her stomach well enough to get a G tube. Out of all the options, this was the most simplest... but it was another surgical procedure! From getting things put into her, to getting things taken out, we've lost count of how many times she's had to go into the operating room! I think this was number eight!!! Unfortunately, there's more to come. But we all felt that getting a G tube was the right decision. She would get the nutrition she needs to continue to grow while getting another tube removed from her face. We all think it was really starting to bother her since before having her NG tube removed, she had pulled it out of her nose nearly every day!... so I think she was trying to tell us something! We allowed her to pull it out of her nose one last time, before her surgery, but she wasn't interested. The challenge was gone and it seemed too easy! Her surgery went as well as expected and she's recovered nicely. She was off of any pain meds and any sedation two days after surgery. The only thing that upset her was not having access to her right fingers, so she wasn't able to suck on them for a few days because of an arterial line they put in her wrist for the surgery. But she's back to her old self now. At this time, the G tube looks like an old rubber hose! I was a little surprised since they had told me that Maia was getting a G tube that was described as a newer version... I really didn't know any better since I have no experience where G tubes are concerned! But she will get this new G tube in a few weeks after the internal track has healed in her stomach. So she won't have this old rubber hose connected to her for too long! The Drs also believe that by removing the NG tube out of her nose, this will allow her to improve and work on her sucking and swallowing coordination. So with help from her occupational therapist, we've been dipping her pacifier in breast milk, and sometimes water, to get her mouth used to having extra liquid in it. So far, so good, because at this time, she still wants anything and everything in her mouth!

Last moments with her NG tube and trying to suck on her fingers.

Our first glimpse of her big cheeks, still groggy from surgery.

Our last few family meetings have been very positive and the Drs have been mentioning the words " going home" quite often! Very exciting and nerve racking at the same time! Both Maia's Drs and nurses admit that it's hard to believe that she is the same baby that was so sick and near death just a few months ago... and here she is, continuing to prove everyone that counted her out wrong! Her Drs are pleased and they're so amazed that we're all talking about going home at this point. It's just a matter of time... speaking of time... a time frame of what's to come is slowly starting to emerge. Right now, her Drs, mainly the cardiac team have decided to keep her Broviac central line. This is her IV catheter that was surgically placed into her chest back in October, mainly because all her veins were no longer accessible. As for the upcoming Glenn surgery, they've decided to wait another 4 to 6 weeks. This may change of course! The main reason her Drs want to wait is to give her kidneys all the time they need to heal and recover, and to also allow her to continue to grow. As we get closer to surgery time, she will once again be presented at the cardiac conference to discuss her surgery. When that time comes, it will be a sign that things are moving forward and the pre-Glenn procedures may start soon, like another heart catherization to see if there have been any changes in her anatomy since her last one. One of the other things this conference will result in is a possible date for her surgery. So until then we continue to wait patiently and anticipate any changes... it's something we all don't like, but it's something we're all used to!

Not sure what to do with all the brotherly love!


Recently, both Maia and Marcus have been working on little things that will help them move closer toward their own goals. Maia loves sitting up in her boppy pillow and her new chair. Little by little she's gaining more head control and each day she is losing more of the bobblehead movement! One of the reasons she likes to sit up is that she can see the TV better! She loves watching all the shows and there's not one show she doesn't like! Maia has also started smiling... a lot!!! And her smile is not complete without her tongue peeking out! It's the cutest thing and she brightens everyone's day! In the last few days, she has also started waving back at people! Her occupational therapist loves this and has encouraged everyone to wave to her. Marcus has also been working on teaching her to high 5! She's been weaned off the vent completely now and hopefully soon we can start the process of weaning her off of the trach.

Big smile!
Maia cautiously waving back

Marcus himself has been keeping himself busy with the start of T-ball season and continuing his pursuit of becoming a Black belt in taekwondo. In just 2 games, he's improved his throwing and catching skills. He's already a great hitter, actually, he's better than we thought! He had a Hit-a-thon in which his Lala (grandma) and Nino pledged 50 cents per foot, thinking he probably wouldn't hit the ball too far... Marcus hit the ball close to 100 feet! So they'll be donating more money than they expected! Marcus has also been working on his nunchucks skills and has started sparring, along with earning his next belt. He loves to learn and continues to soak up information and knowlege from school and all his surroundings. He has also learned to be just as sarcastic as mommy and daddy without even knowing it!... so we have our hands full and have a lot to deal with, both now and in the future!

Game face
Ready for some action!

Once again, I'd like to take the time to thank everyone for their love, prayers, and support. Many have been there for us from the beginning and some have recently joined our adventure. You all play a big part in this journey and we hope you all know that. Whether it's purchasing a shirt or sticker, or "liking" the Heart of Maia facebook page, we feel so blessed and grateful for your show of support. We hope that we've inspired all of you in some way, just as much as you all have inspired us.  Thank you.

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