A Week of Nothing Short of Miracles

It has been quite a while since I’ve actually had time to sit and write or should I say even think in the last week. After the surgery we had a few days of stress just hoping she would recover ok, and better then the last time. Which she did and we were so relieved and happy.  I drove down on Friday and watched Tristan sing at his assembly and it is so nice to show up, and people ask how Faith is and show genuine concern for her and my family. I watched him up on stage and so embarrassed wiggling and trying not to smile. All the while I was holding back tears so happy to be here for him, as Savanna kept looking back at me to make sure I was still there. It’s all these times that I took for granted being able to be there for which are such a big deal to both me and them to share.

We ran a few errands before heading up to see Faith, and as I drove up Dan had to drive down to go watch Jordan’s game. While meeting for just a minute as we drove by each other, trying to be the best parents we could for all of them. We spent that night with Faith and the next morning we all got ready and headed over. This is when the most amazing news and kind of sad news came. I met Dan in Starbucks, our normal morning ritual of caffeine, and he told me that Jordan’s game was still not canceled so they were going to have to leave. Well of course I was bummed that they needed to drive all the way down there again, but more than anything he was going to be missing a BIG thing. The doctors decided that she was doing good enough to have the tube taken out of her throat, and put on just on a  nose oxygen vent! But this meant Dan would not be here for it, but the kids were. See where the good and bad are in this? I was so excited, but part of me hurt since I knew he would not be here with me to witness it.

I called my Dad on the way over saying it may happen in the next couple hours so he called all my sisters and brothers, and they headed up to see her. We said goodbye and walked up to be with her, and as we walked in they had done it already!! I dropped my bag and didn’t know what to do, how to react, or what to say. I sat there and just stared and kept saying oh my oh my, over and over again with tears running down cheeks. She looked SO different! You could see her mouth, her lips, her tongue, her jaw. You could see it all, and then there it was…her cry. Now there wasn’t much noise to it since she has never used her voice box before, but I could hear her, and that’s when the kids, the nurses and I all cried together. It has been a whole month and for the first time I saw my babies face, and heard her.

Now at first it is all so new to her and she couldn’t swallow, or suck so we worked on trying to get her biting on the pacifier and just sucking all the spit bubbles from her mouth since she didn’t quite know what to do. It was pretty sad to see how much pain she was in when she did try to swallow since her throat was extremely sore. But it was the most amazing day to be witness to and to have the kids there to share it with. Dan, Jordan, and Garret got back later that night and went to see her, which by then she was a lot more content. The rest of our weekend we spent together hanging out around the hospital before doing our drives down to drop kids back off.

Today marks a week since her surgery and she is doing AMAZING. They have turned her oxygen pressure down from 6 to 2.5 and her O2 levels are at 30%. So she is almost ready to be put on the regular nose cannula vent and then it’s no oxygen at all!! She is also up to 4ML an hour of breast milk and cutting back on her pain meds. The only thing is, is the dialysis port. The hemo dialysis is very touchy to flow in and out and today has been not a good day. She was doing really good on it so we were able to hold her for hours at a time as long as didn’t move much, but starting last night Dan went to hold her and 10 minutes later, and trying all the positions we could, he had to put her back, and we haven’t been able to hold her since.

They are talking today though since the lines are not working that well to start using the PD port that they put in just last week. Now that makes me nervous, or should I say VERY nervous since the risk of infection is very high and risky if it is used before it is completely healed. SO as I sit here listening to the nurse’s talk they are still indecisive about if they will be using the dialysis port tomorrow or waiting…please.

So at this point we are in a waiting game just seeing how she does and what the next step will be. All the while I know what I am hoping for and that is to go home, but I can’t decide when that will be. So my prayer and hope is by Easter. Until them I will try my hardest to be content with what I have and not try to think of what I don’t…like holding her, nursing her, and just being able to walk into a public place with her in my arms.