a big day for Mia

Today was a big day for Mia.  She has been successfully weaned from the ECMO machine and is now relying only on a ventilator to help her breathe.  It was a stressful day, with hourly changes, but the end result was worth it.

Thursday night, we were told that the ECMO machine could only be used for a certain amount of time before it would need to be cleaned.  Mia had reached the limit with her original machine and we planned on her being switched to a new machine Friday morning.

When we arrived at the hospital this morning, we were told that since she would need to be switched to a new machine, they were going to do a trial run of taking her off the ECMO completely.  The first trial run at about 10:00 this morning lasted only 30 minutes.  Her fluid levels were not optimal and they had to put her back on much quicker than planned.  After giving her some fluids, they again stopped the ECMO at around 1:30 pm.  She handled it beautifully, but the surgeon who would remove her neck tubes wasn't available until later in the evening.  So, for a short time, the ECMO was turned back on.  At about 5:30 pm the surgeon removed the tubes from her neck and she has been relying solely on the ventilator since then.  This is great news!

She was less sedated today when they were making these changes, so she moved more than I have seen her move in a few days. The highlight for me:  she opened her eyes today. Not much since they are so swollen, but just enough so that I could see her little eye inside peering out. It was such a special moment.

She will most likely be moved back down to the NICU in the morning where she will continue to gain strength in her heart and lungs, and hopefully be ready for surgery next week.  We have not had the chance to speak with the surgeon or neonatologist yet to determine which day she will be undergoing surgery, but her current status is promising.

We went up to "tuck her in" tonight and she is already looking much better.  For the first time since Sunday, the nurses are able to change her position slightly.  Since the tubes were placed in the right side of her neck, her head was turned to the left and couldn't be moved.  Most of the fluid she has been retaining in her head and face pooled to that side.  Her head is now turned more upright and I saw her left ear for the first time since Sunday.  It is beautiful, and as she continues to get rid of some of the excess fluids, her little head is returning to its normal size.  I am soooo looking forward to taking her picture in the morning.  I was able to stroke her hair tonight and remember how incredibly soft newborn skin and hair can be.  She'll soon be ready for her first hair washing, which is much needed, to say the least.

Tomorrow will hopefully bring more information about her surgery.  We still have quite a journey ahead of us, and we are far from being "in the clear," but for now, I am feeling very grateful for her progress. She is such a feisty little fighter, I am so proud of her.

I tried to take a picture to get a perspective on how much equipment is needed to support our little girl.  Unfortunately, my lens wouldn't let me get it all in a single picture.  This is little Mia on her bed.  To the left is a tree of drips and gauges.  I believe she is on about 15 different medications at this point, each with it's own tube and controller.  Behind her to the right is her ventilator, and some other equipment that I haven't even asked about. 

Further to her right is the ECMO that has been such a blessing in our lives.  Seriously, it doesn't look like much, but this machine is amazing.

Her room seems so much bigger tonight with all the machinery removed.  There is now room for chairs to sit in.  Up until now, we could only stand next to her bed and attempt to stay out of the way.  Of course, the nurses and doctors have been so accommodating, welcoming us into her room no matter how crowded, helping us understand what is going on, and doing their best to work around us.

There is so much more I want to say, but frankly, I'm exhausted.  I need to pump and then get some sleep.  Tomorrow should be relatively uneventful, and I welcome the break.  Laci will be coming to visit us, along with other family members.  But I can't lie, I'm most looking forward to seeing my "big" girl.

~ Ryan, Mia, and I just before she was removed from the ECMO ~