Sunday, January 19, 2014

Moving Around...

This past week we finally resumed our meetings with Maia's Drs. We also had a change of scenery for a few days, as we were moved to another floor into the PICU (Pediatric Intensive Care Unit). Other than that, I'm happy to report it was somewhat of a boring and uneventful week!... just the way we like it!

Maia looking worried about her room situation
This past Wednesday, we were told by Cathy, the nurse manager, that Maia would be temporarily moving down to the PICU. There was an overflow of cardiac patients and what usually happens is that the most stable patients are moved to the other unit to make room for "sicker" kids. She said during rounds, it was discussed and all the Drs and nurses agreed that Maia was the most stable baby right now. It was truly a strange thing to hear! She said even the Drs found it hard to believe at first, considering how sick Maia was about 2 to 3 months ago. Unfortunately, her reward for being the most stable was to move down to another place... a shared area with less space and privacy. Not really a big deal, it was just a big change for us since we were used to our own private room with a TV and a big window. So when we came to see Maia on Thursday, she was already in her new room. Marcus desperately tried to maintain some privacy by closing the curtains as much as possible, but it really didn't work! It was pretty much one big room with curtains separating the patients. Maia seemed fussy at times, but didn't seem to let her new surroundings bother her too much. She was very hot and sweaty so they got her a little fan to cool her down. I don't think we realized how nice it was to have our own room until we didn't have one anymore! It reminded me of when we were put in a triage room after I gave birth. It was a tiny room with thin, accordion walls. We could hear everything going on next door to us, including when the girl next door was having contractions! This time, it was all the other beeping machines from the other patients, and all the noise we normally didn't hear from the other patients. Since there were no tv's, it seemed like everyone was either on a phone, tablet, some sort of gaming device, or just sleeping. One patient was a girl about 5 years old and when it was time for her meds or time to draw blood, she would scream "leave me alone, get away from me!" at the top of her lungs! I tried not to pay attention, but it was hard not to hear. Fortunately, Maia slept through it all! We would joke around with the nurses that Maia might feel the need to cause some drama, just so she could move back up to the PCICU (Pediatric Cardiac Intensive Care Unit) and have her own room again! Some of her nurses agreed that upstairs in her own room is better. But it really wasn't a big deal, except that Maia ended up getting a low fever! So maybe that was her way of telling us that she'd rather have her own room! So on Saturday night they moved Maia back up to her own room in the PCICU. It wasn't her old room, but it was a room! It was what she was used to, what we were used to. I think we're spoiled in that way!

"I want my own room" look

So this past week, we were able to get together for a meeting. However, it ended up more like a little tea party... it was me, the social worker, the nurse manager, and one of Maia's cardiologists... it was an all girls meeting! Since there hasn't been too much going on with Maia, the focus was mainly on what lies ahead for her. As of right now, they're all waiting to see what her MRI will show. Dr. Robertson, the cardiologist, explained that they're looking to see if she's outgrown the changes made from her Norwood, the first surgery. Depending on how it looks, this will give them an idea of how long Maia can wait until her next heart surgery, the Glenn, which is the 2nd of 3 surgeries. If they feel she needs to have the surgery sooner rather than later, she will most likely have it sometime in late February or March, when she will be around 6 months old. For now, they're all pleased with the way her heart has been functioning... good blood pressure, nice squeezing ability. We also discussed the changes in Maia since her tracheostomy. She's had improved hand-eye coordination, she's discovered her fingers and hand, and they've been able to decrease her vent settings to "extubatable" settings. But before even thinking about extubating, they want to focus on other things like her bolus feeding, along with continuing her sprint exercises, which will help the extubating process. Ideally, they'd like for Maia to be off the ventilator before the next surgery. We also discussed flu shots for family members and also Maia, however, she's still too young to get one. We've all gotten our flu shots, so I'm hoping that helps to prevent Maia or anyone else from getting the flu. They said in years past when the flu season has gotten really bad, the Drs have decided not to allow any visitors under the age of 16. But so far, it hasn't been that bad this year and we're all hoping it stays that way. Also during the meeting, once again the phrase "going home" was mentioned... nothing in detail, but sentences starting with "when you go home" or "when she goes home" made me a little nervous! I'm glad she's doing well enough to use those words, but we'd rather she stay in the hospital a little longer if it means weaning her off of some machines or meds. We've talked to one of the other parents in the unit, whose baby girl has been back twice after being discharged in November. He says its very different at home when there's no machines telling you something might be wrong. So we have some mixed feelings about going home... it can be both a good thing and a bad thing!

On Friday, Maia was supposed to have her MRI, but it was rescheduled for Tuesday morning. She will be given meds to paralyze and sedate her, making it easier for the technician to get a better picture. They're not sure how long the MRI will take but she will most likely be asleep the rest of the day. The results will be available a few days after, so the Drs will probably discuss it with us at the next meeting.

Having a crazy hair day

We as parents are continuing to learn and do more hands on care with Maia. I'm getting used to suctioning her, but Gordon is still a little nervous about doing things! He suctioned Maia for the first time today while I helped out with changing her trach ties. I didn't think I was ready and wanted to watch them do it today, but they insisted I try, so I did. It wasn't bad at all and Maia was very cooperative... she fell asleep! The times I watched before, Maia tends to squirm and move around a lot, making it difficult sometimes, but today she was more relaxed. The other day, I asked if they had a doll we could practice on, and they did, so we've been practicing on the doll. But it's different on the doll since it doesn't move at all and just lays there! Even Marcus has been using the doll to practice suctioning! However, he really wants to practice changing diapers, but only on the doll. I think he's still a bit grossed out by what he'll find in the dirty diapers! But overall, Marcus loves being a big brother to Maia. Today he sat in the crib with her and got the chance to brush her hair, be Maia's pacifier holder, and play with her feet! He was loving Maia's little feet and couldn't stop playing with them! It was very adorable to watch.
Daddy pretending the trach came out!

Practicing changing the trach ties

Marcus playing with Maia's feet
Loving Maia's feet
Marcus multi-tasking

So we're hoping the uneventful days and weeks continue and that Maia keeps on taking her baby steps and making the necessary improvements. It's still hard to believe that the Drs and nurses considered labeling her the most stable patient! She's come such a long way and has overcome so much... yet we still have such a long road ahead of us! So we continue to take things one day at a time, otherwise it can get pretty overwhelming! The bad part is that we tend to lose track of time very easily... "what day is it today?" is a question that's asked at least 5 times every day for us! Maia was born at the end of August and we've already celebrated several holidays with her at the hospital, along with her monthly birthdays. So time is really flying by! But we're all so thankful that Maia is here with us and getting stronger every day. We truly believe that "it takes a village to raise a child" and in Maia's case it really is a team of Drs, nurses, therapists... and of course her team of supporters, from family and friends, and to those that are new to our story... all the prayers, kind words, and caring thoughts, are all felt by Maia and those that care for her... we can't thank you all enough!

We would also like to thank those that bought Mighty Maia shirts. Thank you all so much for showing your support and wearing your shirts! Our adventure has just begun so we hope all of you will join Mighty Maia's Fight Team and continue showing your love and support! Thank you.


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