Friday, November 8, 2013

Slow and Steady...

Bye-bye sensor, hello forehead!
For the past 2 weeks, Maia has been doing pretty good, making little improvements in her recovery. The doctors and nurses are pleased to see her very stable and are sometimes hesitant to make any changes because she's doing good. Also, for the second week in a row, we haven't had a family meeting with her team of doctors and nurses, mainly because of scheduling conflicts... so Dr. Tabbutt, one of Maia's pediatric cardiologists has been keeping us updated on Maia's condition. Since she's been stable and her peritoneal dialysis is working effectively, and her Broviac is working nicely, there hasn't been too much to report on. The doctors are confident her oxygen saturation levels to her brain and head are good, so she no longer has to wear a sensor on her little forehead... now she can actually wear hats and beanies properly, and we can give her kisses on her forehead! Her urine output has been getting more consistent, so we know her kidneys have slowly started working again. The doctors have said they think she would pee more if it weren't for the dialysis, but taking her off of dialysis right now would be such a drastic change and too risky for a baby in her condition. So they're still trying to figure out a way to somehow wean her off slowly. She still has some extra fluid in her abdomen wall, which causes pressure in her lungs, so as her fluid content and tummy gets smaller from the dialysis, they are able to slowly lower her ventilator rate. But yesterday they noticed that Maia's white blood cell count had increased. So as a precaution, they started her on some antibiotics. They had found some bacteria on her breathing tube, similar to the last time that caused an infection. This time, they started her antibiotics early instead of waiting for an infection. Nothing yet has been confirmed as to what she might have, but we are all happy to see that Maia is not acting like a sick baby... just like big brother, Marcus, who doesn't know the meaning of "rest" and doesn't slow down at all when he's sick! She doesn't have a fever and her vitals are all good. The only thing that's changed is her secretions have increased, so they've had to suction her more and increase her vent rate. Other than that, she is still really alert as to what goes on around her. So while the doctors and nurses wait on the lab results, we're all keeping our fingers crossed and praying that this doesn't turn out to be anything serious!

Speaking of fingers, Maia got her splint yesterday! It's so tiny it's the cutest splint ever! It's made from neoprene so it's comfortable and won't irritate her sensitive skin. The occupational therapist checked both her hands but feels that only her left hand needs the splint. She said that Maia has good gripping and flexing strength on both hands but likes to keep her thumbs, the left one in particular in the tucked position. So wearing this splint should help her keep her thumb in the correct position... but of course I forgot to take a picture of it, so that will be on a future post!

Many have asked us "how do you guys do it?... how do you keep smiling?...." We can't really explain it, but for us it's a choice between being positive or being negative. But don't get me wrong, we do have our sad moments... but whenever happens, it's as if God purposely introduces us to another family to keep us in check and make us realize how good we really have it! There are other families out there who have been through so much more or are having a harder time than we are. For example, we are one of the fortunate ones that get to go home every night. Many come from miles away and don't go home for days, weeks, and sometimes months! So we always try to make the best out of our situation and not take things for granted. We continue to pray and have faith that this is where we're meant to be right now and know that God has a bigger and better plan for us. There's no time to think of the "what if's" or the "should've, would've, or could'ves." We do what we can and leave the rest to God. We are truly blessed and feel so grateful for everything we have.

Wearing her new "Maia" beanie!

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