Friday, November 5, 2010

Update from Nicole 11/5/2010


I noticed something when I saw Wrenn in her dress the other day; she is vulnerable and sweet and smells so good. She is and always has been my sweet little baby girl. When she was in the NICU in Orlando we couldn’t believe she needed a transplant. She seemed so normal and vibrant. We had emotional days in Florida and they weren’t even the ‘hard’ days yet. Once we got to St. Louis Wrenn only wore a diaper because there were so many wires and tubes. I realize now that her wardrobe (or lack of one), was a key factor in keeping my emotions and sanity in tact for those 8.5 weeks. I saw her as a warrior, the fighter we ALL knew she could be. I think on most days I held it together because she was holding it together. And then with everybody praying so hard for our family we somehow got through the storm and are finally seeing clear skies, even though we remind ourselves everyday that the weather is still very unpredictable on the months and years ahead.

Seeing Wrenn in her dress made my eyes swell. If I lifted up her shirt and took a photo of her chest, you would see what is hidden underneath: All the holes, the broviac, the bandages, the scars and leads. Today, when she cried, I reached underneath her arms and picked her up from her crib and comforted her with a steady rock. She stopped crying right away. Not being able to do that one thing haunted me for so many months I thought I was going to go crazy. I always needed a nurse for fear of extubating her or pulling out drainage tubes or making her oxygen levels fall into the 40’s. I’ll admit, I’m nervous about her incisions and pulling out her broviac and worry I’ll make her cry. I feel with time my confidence will improve and then I’ll just do my job, love on her without worrying about anything else. For now I’ll keep practicing.

Wrenn looks so vulnerable and dainty now and so I find myself just as vulnerable. The wall I had built leading up to her surgery has come down and I can finally, finally see the light at the end of the tunnel. Lately, tears fall at almost everything. I had lived in an area of gray for so long that I now have swings of highs and lows and oh my, do I LOVE the highs. Everybody prayed that Wrenn would breathe on her own. I lose myself in wondering what that first breath must have been like for her. God answering our prayers made it possible for me to hold those rollercoaster of emotions inside for so long. And now I realize I need to enjoy each milestone. Embrace the good. Smile at everything she does. And take deep breaths like my daughter but do it without thinking about it.

Wrenn was in Room 522 in the NICU for 8.5 weeks and 4 feet away was a conference room where they had a scrapbooking class every Tuesday and Thursday morning. I was never in a place to start such a project. I was always holding Wrenn’s hand, talking to doctors, eating in the cafeteria or taking care of Tanner. This past Tuesday I entered that room and put together Wrenn’s birth page. Believe it or not, those memories are so vivid in my mind but so painful, that to have done this project before transplant would have been too difficult. I wasn’t in a place to document her life. I was afraid of jinxing her and felt that putting her journey in a book was somehow finale. I was waiting for Wrenn to tell me when to start and so now I feel it is my time to heal. I feel ready to reflect. I will recall the bad so I can embrace the good. Appreciate what I have and where we have all come from.

We still have mystery issues to get past. She has been a difficult patient and has already spent a month longer in the hospital than most babies after transplant. She will have many appointments during the week to get her developmentally caught up. She will need to co-exist with Tanner, who I know will be an amazing big brother. My kids will be jumping on the bed and getting in to trouble within a year. I am telling myself that the journey isn’t being there, it’s getting there. I’m okay with that. I have so many people praying for us everyday and I know this is why Wrenn has been so blessed. This is why the four of us are STILL standing. This is why we are all going forward. Please continue to keep us in your prayers. And thank you for sending us so many wonderful Guardian Angels. I will continue to update you on Facebook so you can see every blessing you send our way.

Xoxo,

Nicole

 

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