Thursday, May 1, 2014

Cinco De Maia

Maia's next open heart surgery, the Glenn, is scheduled for Monday, May 5. This will be the second heart surgery out of three, and will allow for blood from her upper body (mainly the head), to reach her lungs without being pumped through the heart. This relieves her heart's right ventricle of having to pump all the blood to both the body and lungs. The key is for the pressure in her lungs to remain low, allowing for passive aggressive blood flow into the lungs. Blood to her lungs will no longer be pumped and will "free fall" down her right and left superior vena cavas straight into her lungs. Although this surgery is not as complex as the first one (Norwood), Maia is not the typical heart baby so the Drs are being extremely cautious. Maia's heart surgeries are all on the complicated end of the spectrum... she is a unique case and they've reserved Monday's surgery schedule just for her, so she is the only heart baby having surgery that day. 

Maia laughing

One of Maia's nurses came up with "Cinco de Maia" and it fits well as May 5 will be her surgery day. It's not only a big day for her, but for the nurses and Drs too. In their own way, they've all developed a relationship with Maia and they all want nothing but the best for her. Similar to her post-op care last time, they've set up a team of nurses for her, during this critical time in her recovery. These nurses have cared for her often and are very familiar with Maia's needs and wants. Maia has been very cheerful and ready the last few weeks... we all have! 

Maia in her "Rizzo" from Grease look!

This has also been a stressful week leading up to her surgery. We've known going into the surgery, the complications and difficulties involved regarding Maia's condition, and that the odds we're up against have always been high. As we pray along with everyone and hope for the best, we're still scared and well aware that anything can still happen... anything is possible. After the Glenn, we hope, pray and wish that Maia's recovery goes smoothly without any difficulties. We've learned to always take the average recovery time we're given, and double and sometimes triple it. Either way, as long as Maia is in good hands, to heal and recover, we don't care how long it takes or if she's in the hospital or at home.  We just want the best for her.  

Showing off some chubby rolls

Maia recently turned 8 months old on April 29! It's still hard to believe she's been in the hospital this long, and that we've been driving to the hospital every single day and Gordon started going in the morning, then back home and getting Marcus from school and coming back!! She continues to grow and amaze us all... just this past week, she's added a new facial expression to her repertoire. I call it "scrunchy face" when she crinkles her nose! Sometimes she looks mad, sometimes she looks funny, and sometimes she looks like a pirate!! She's been making this face often but we're not quite sure what she means by it!! But it's very funny and makes everyone laugh and smile! She's also started playing with a baby gym, which looks like a mini swing set frame where rings and toys can hang from it. At first she would play with the hanging rings and toys but we weren't sure if she liked it. She didn't show much expression her first day playing with it. However, now she loves grabbing the rings and playing around with the different toys... not as much as she loves watching tv though! For now the tv is still her all-time favorite "toy!"

Not quite sure what to think of this...

"scrunchy face"

Unfortunately, not everything Maia's been doing is necessarily "good." She has also continued to rub and scratch her right eye, so now there is a very noticeable rash on her eyelid. She seems to do it more when she's tired, but we're not always by her bedside so we can't stop her. She actually rubs and scratches both her eyes, but since the nail on her left index finger hasn't grown back completely, she can only rub it with her fingertip, so her left eye doesn't have a rash. For now I've just been putting some Aquaphor ointment on her eyelid to help it heal. We've thought about putting some mittens back on her, but this would also prevent her from sucking on her favorite fingers! Plus, I'm sure she would find a way to take it off! Which leads me to another thing Maia has started doing... she is much more active now with both her hands and feet! When she gets mad, she's able to grab her trach collar and pull it away from her, but it's tied around her neck with elastic, so it snaps back at her! (Ouch!) She's also able to pick at her trach ties, which kind of scares me. We really don't need her tugging at her trach ties and possibly taking her trach out!!! She's also been exploring more with her hands and touching all the different wires and tubes connected to her. She hasn't really pulled on anything, but she likes to feel around and rest her hands or hold on to the tubes. She's also been able to reach the PICC line on her left thigh. Thankfully it's taped down really good so she can't really mess with it too much, but she seems to be more curious about it... either that or she's just itchy from all the tape! Lately, it hasn't been just her hands that are more active, but her legs and feet too! Changing her diaper is no longer as easy as before... it can now get quite challenging at times. If I'm not holding her at the ankles tight enough, she's able to kick wildly and break free from my hold, which can make for some challenging changes!

Her poor lil eye is all dry and rashy

Just a few days away, Maia will be having another major surgery, the Glenn. We ask that you all continue to pray for her and that she's able to recover. We also ask that you pray for her Drs and nurses, and everyone that cares for her. We also ask for prayers for ourselves... that we may continue to have the strength to help her through this.

Once again, we want to thank all of you for choosing to join our family's journey. We can't thank you enough for all the kind thoughts, supportive words, and the endless amount of prayers. 

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