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.

1 comment:

  1. Really Enjoyed Reading This, Lots Of For All Of You And Blessings.


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