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!


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