Homestretch?

Homestretch?

Written 19 hours ago by Amber Gannon Medina

Yesterday was Mira's 7 month birthday and we had a nice day together! 

Mira has been doing fairly well, heck compared to a few weeks ago she is doing amazingly well! She is starting to try to roll over (not exactly easy when you have to bring a pounds worth of cords, oxygen tubing and IV lines with you!) and seems very determined to succeed. She is also doing a bit of sucking and swallowing which is another big accomplishment given that she suffers from oral aversion. She loves to watch Baby Einstein videos and play with her crazy hot mess of a mobile we hooked up over her bed.

The one big hurdle of eating is going very well, which has been surprising for all of us. We were forewarned from the very beginning that feeding issues were the big hurdles that kept a lot of families from going home. After quite a lot of trial and error, Mira seems to have found her groove. She is on continuous NG feeds and has finally reached what the doctors consider FULL feeds-a very important accomplishment! 

The next meanders (and most likely weeks) mean a lot of weaning. Valium, milrinone, oxygen, IV diuretics.... To name just a fee! Mira has just started getting weaned off her IV diuretics, and after a bit of extra fluid, they upped her enteral dosage. She seems to be doing well and has so far not had to be put back on the IV dose. However, we are all used to Mira-out of nowhere-having difficulties breathing due to excess fluid on the lungs, so I am hoping that doesn't happen!

The next big step will be taking Mira off her Milrinone and I am nervous about it. I think the doctors are too, because they keep putting off trying to wean her. I will definitely be on pins and needles when we attempt it!

Mira is currently on the schedule to have a G tube placed on June 6th. Sigh...I know, and appreciate that a few moms have told me not to worry! And that reassurance has made me feel a tiny bit sad instead of outright terrified of the prospect. I remember when Mira was a few days old-before she had her 1st surgery-and I marveled at how perfect her little body was. No imperfections, just sweet and soft and pink. I knew in a few days she would have a gnarly scar down her entire chest and it made me so so sad. Not because of the vanity or look, but because of what it represented-pain, loss of innocence for a tiny baby who shouldn't have to go through this.

Of course, after 3 open heart surgeries, Mira has just a few scars and imperfections now, but I have that same feeling. Having a G tube placed will feel like a constant reminder to me that Mira will struggle and experience a lot more pain than most ever will. Also, despite it being fairly safe it still has some nasty possible side effects. I am also very nervous about putting Mira through another surgery-she likes to make simple things turn dicey, and complicated things turn dangerous-simply put, she likes to ratchet everything up a few notches. Even though a G Tube is a "minor" surgery, it still means putting her under, intubating her and a good amount of sedation...all of which she reacts to in unpredictable ways.

Even with all the negative feelings I have associated with the G tube surgery, I am also excited because it means we will be close to being home bound! Apparently, the doctors want to get Mira close to being ready to go home before they do the surgery. So at least when I tend to feel like pushing away the thought of a G tube, I remind myself that it means our one big goal is in reach. HOME. 

Other than all this slow plodding with Mira's progress, there isn't much else to report. The big news lately is how extraordinarily busy the hospital has been! Not only is our ICU unit full to capacity, many of the other units are as well. Our nurses have been putting in tons of work and so many hours and they haven't complained once-we want to thank them a million times for their hard work! 

We are also grateful we haven gotten moved to another unit-we can't imagine how lost and unsure we would feel if we had to work with a bunch of strangers. The doctors have had to make tough decisions about who gets to stay in the unit and who is moved to other ICU units. Mira keeps the people who KNOW her on their toes, I'm not sure how I would feel about people who aren't familiar with her taking over her care. So far, so good-we've managed to try and ingratiate ourselves by bringing candy and cookies! Please oh please let us stay-twix bar?