Saturday, July 25, 2009

Strength- Come in a Bottle?

It's only 9:30am, but it's been one hell of a morning. Last night, Grace continued to have a hard time- we weren't sure if it was because she was coming out of sedation from the cardiac catheter, or if she was ultra dried out from the oxygen, or just over tired, but she would not stop rubbing and itching her face while screaming. At about 4:30am, I told Felix that if I didn't sleep, I didn't think I could go on- I had maybe gotten 2-3 hours of sleep per night since Wednesday. (Felix got home about 8pm yesterday evening) We were sharing a small couch in the hospital room, making the best of awful living accomodations until our room at the Ronald McDonald House was ready this morning.

I don't remember anything beyond that (blissful sleep!!!), but I woke up to many people in her room around 7 am. We were informed that Grace had been de-satting (basically not getting above 75% oxygen) since about 5 am, and was becoming more irritable. They were planning to sedate her to keep her calm, stopping her feeds, and moving us into a surgery observation room- and the kicker, be prepared for surgery to happen immediately if necessary. We frantically called family asking if they wanted or needed to be here, called airlines, threw our clothes into suitcases, cried and carried on.

Getting to her new room, the surgeon came by to talk with us. He would like to put in the largest conduit possible, so that Grace can avoid the next surgery for as long as possible, giving her room to grow. Unfortunately, since Grace's condition is somewhat rare, the hospital doesn't keep a supply of conduits, so we are having to wait on "Grace's parts".... she's like a foreign auto, I suppose? Surgery, if possible, will be dictated by that date, but is looking more and more like Wednesday of this coming week. The plan is to continue to sedate her in hopes of keeping her calm, but if that doesn't work well enough, they'll ventilate her and basically put her in a pseudo-coma, until surgery arrives. They really prefer not to do that... so, if it gets bad, they may bump another kiddo from the schedule and fit us in.... So, essentially surgery is between now and Wednesday, and so we wait....

It's tough going through all of this, not only for us, but our family & friends too. So many of you want to be here for us, and I love each and every one of you for it, but it's extremely difficult. They only let family into the recovery room (which becomes our room after), and with the prospect of Felix's mom or dad coming out, and my dad coming out, that leaves little room, as my mom and Pam are already here. I love that everyone wants to be here, and hug me (I need them so badly!) but I refuse to leave her.... So, please pray for us, love us, and even send us virtual hugs. Visiting with us at the hospital is probably a non-option for the next week or so, but feel free to call, email, text, and even drop by care packages :)

I have a hard time explaining how I feel about this next procedure. It's truly bittersweet. Any parent hates to see their child in pain, so the before and after of surgery is hell.... but knowing there is no viable option but surgery, and knowing the opportunities that allow us to be a "real" family after surgery, help get me through all of this. This surgery is so much different for me than the last one- I don't seem as frazzled, but really, inside, I'm more afraid. I loved her before, but not like now. I try to explain to people, and maybe it's different when you adopt- but I had to get to know my baby, and she had to get to know me. Now, she knows my voice, my touch, and I know her likes and dislikes, how she likes to be touched, dressed, etc. During the last surgery, they had to teach me how to be with her- what touches she would like, etc. and this time around I get to tell them... It's a nice role-reversal, but it also means this surgery means so much more. I hope I'm not making it sound like I would have been okay with complications on the last surgery, because that's not the case- I loved her and needed her probably as much as she needed me, but now, now she's my world. She is my heart that lives outside of my body- she's the reason I get up each day, I smile, I laugh, the reason Felix and I are exhausted, but still manage to look at each other and smile and the reason we know that we're blessed, not burdened, by our little miracle. She teaches us- and we're honored to be able to parent her.

Give us strength.... I may need it.

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