Thursday, October 29, 2009

October 28-29, 2009

Zoooom! Where have the last two days gone???

Yesterday we dropped Kayla off with Grandma and Grandpa Aguilar and headed up to Palo Alto to spend the day with Gabe. It was the first time in quite a while that Jesse and I have had the opportunity to visit with Gabe together. Thank you G & G Aguilar! Gabe had a good day yesterday and spent most of the time sleeping. We decked him out is his super cute pumpkin/Halloween garb and did a little photo shoot in the first part of the day. We would have loved to have left him in his costume, but the beenie, booties and bib were sure to have overheated Bubba, so we removed them promptly after the shoot. Yesterday we discussed moving G back to the big boy vent. It has a pressure support setting that will support each breath he takes, which in turns strengthens his lungs. This morning Gabe was switched to this vent. He slept right through the switcheroo and has done well on it all day. The most talked about issue yesterday and today was, as usual, his chest tube output. I believe between Tuesday night and this morning he had put out a little over 300 ml. Most was from the left side. My heart sank this morning when I heard this number. The right side really isn't putting out much anymore and I was hoping the left side would be following close behind. Gabe hasn't put this much fluid out in a really long time. We have no idea why this happened. I guess we just have to wait and see if it was a one time thing or if the flow is going to start picking up. With this large chest tube output, Dr "R" is interested is getting the pediatric surgery team involved to find out if a surgery that ties off a section of the lymphatic system, in hopes of stopping the leak, is something that could be considered

This surgery has been discussed in the past, and at this point it is not something Jesse and I think should be considered yet. If memory serves, I believe the cardiothurasic team was consulted a little over a month ago, and I don't believe this was a surgery they were in favor of. We will see how they feel about it again. Jesse is going to have a care conference with Dr "R" tomorrow and I'm sure Gabe's chest tube output and this surgery will be at the fore front of the converstaion.

As the day progressed today, Gabe wasn't putting much out of his chest tubes. This seemed extremely suspicious, especially considering how much came out in the last 48 hours. Gabe began to get more and more agitated. They aspirated his chest tubes this afternoon and were able to get things flowing again. The release of fluid did the job and Gabe settled back down. I would get upset too if there was fluid filling up the space around my lungs.

We spent yesterday with Gabe, so we took the day "off'" from the NICU today, and spent the entire day with Kayla. We headed up the coast to a fabulous pumpkin patch with pony, train and tractor rides; a playground; jumpy house; a huge maze, which we didn't attempt; a petting zoo; and lots of other great stuff. It was a beautiful, crystal clear day, and we thuroughly enjoyed every minute of our time with Kayla, and with eachother. It is tucked in a little valley, and if you stopped and listened, you could hear nothing but the sound of the wind and Kayla laughing. It was such a difference from the loud beeps and other noises of the NICU. I had a really great time running around with my husband and daughter, but I have to say that in some ways, it was rather bitter sweet for me. The whole time we were there I had a slight ache in my heart because one thing was missing. This year when we visited the pumpkin patch, I was supposed to have Gabe strapped to the front of me, snuggled safely in the Baby Bjorn.

How I long for the day I can scoop Gabe up and put him in the Bjorn. How I long for the day I can hear him cry; see him smile; see him sit up; see him in clothes; see him without wires and tubes. I welcome the day I want to pull my hair out and lock myself in the bathroom because I'm feeling overwhelmed by my children, both of which are infront of me, in our home, both of which are needing different things at the same time. I feel cheated out of the pregnancy experience, the childbirth experience, the baby experience. Gabe has been cheated too.

We are handed what we are handed in life, and although it doesn't always seem fair, I believe there is a lesson to be learned in every path we are sent down or choose to take. Gabriel has reminded me how very precious life is, and how we must embrace every day because you just don't know what tomorrow holds.


Robin said...

Dear Shannon,
your strength and faith are evident as you are trying to cope. You and Jesse are working so hard to stay positive and create a sense of normalacy for Kayla and Gabe. This is an extraordinary effort and the feelings of not life not being fair are only natural. But the fact that you stay strong, come back up from the depths for your family is AMAZING. Love you all so much. Happy Halloween Gabe, Kayla, Jesse and Shannon!

Meghan said...

I love the picture where his little legs are crossed! Happy 4 months Gabe. xxoo