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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.




Molly said...

This brings tears to my eyes. I am so happy Wrenn is doing better. I am on edge all the time with you at every post. I wish the very best for you and your family.

Tara Petrone said...

I don't know you or your family... but you are all such an inspiration! You really made me cry and I am so happy for you and that little baby girl! I've been praying so hard for her and she is such a fighter. I am so glad to see she is doing so well. The picture above is so precious. I will keep saying those prayers and I really wish you all the best!

Heidi Ho on November 5, 2010 at 11:15 PM said...

Mama....You are strong and you speak your story with words that are soaked in love, pain, experience, fear, and faith. As I read your writing, I was reminded of our (my family's) own journey just over two years ago.

I guess I just wanted to say that the fear is always there, but you learn to live with it and wear it proudly. It is your "badge of courage" as a mother.

As I touch my child's head, everyday....I feel the miracle that is both her, modern medicine and faith wrapped up into one. I touch the machine that is keeping her alive and am amazed by the opportunity I have been given to be the one that is trusted as her guardian and care giver. I am also keenly reminded of how fragile life truly is. How close we are everyday. How motherhood was "different" for me.

You are strong and will continue to be strong, although weak days may feel overwhelming and can take every bit of your faith to keep you going.

We've never met, but I recognize the lump in your throat as you write the above words. I recognize the fear that you choke back every day.

There will come a time when you can relax, if only for a moment or two, and experience being a mommy, not a medical care giver. And I totally understand about the dress. My daughter, who is just over 2 right now, snuggled in bed with me tonight, wearing her fuzzy PJ's and started to cry when Swiper stole Boot's shoe. In that moment, I looked at this little child who, although she has been through needles and surgeries and medicines galore, still had love and compassion. I rubbed her shunt in her head, kissed her (and the shunt :) )and cherished the moment. Those medical pieces and parts become a part of them. You grow to love them as well.

Our kids are strong. They know our love is there even if we couldn't pick them up and hug them every moment in the beginning. I'm beginning to realize that we live in the moment, we enjoy those moments everyday and we do our best.

Thankyou so much for being so incredibly strong and for sharing your story of motherhood with us. It makes those of us out here, who have been through similar fights, feel like we are not alone in the world. Please remember this, you are not alone either.

Love and strength coming to you and your family from a total stranger whose life you have touched and made better by your journey.

Anonymous said...

I just want you to know that I feel truly blessed to have had the chance to know and care for both Wrenn and you. You are a wonderful mother to both of your kids and I am so happy to hear that you are finally allowing yourself to feel all that you were afraid to feel in the moment! God is good and I'm so thankful for the miracles he has sent your way! :) Your family will have a piece of my heart forever!
Beth (StL NICU RN)

Anonymous said...

Your strength amazes me. Wiping tears right now. I crumble when my 12 month old gets a boo boo.. I couldn't imagine a transplant and all you have been through. What a special baby girl god has blessed you with. I think about and pray with your family daily. She is such an amazing child! thank you for sharing you story with us. You will remain in my thoughts and prayers.

Anonymous said...

Your strength amazes me. Wiping tears right now. I crumble when my 12 month old gets a boo boo.. I couldn't imagine a transplant and all you have been through. What a special baby girl god has blessed you with. I think about and pray with your family daily. She is such an amazing child! thank you for sharing you story with us. You will remain in my thoughts and prayers.

Just me on November 6, 2010 at 8:54 AM said...

It's so great to hear Wrenn is doing better! Remember that God's been with you this whole time and He's not going anywhere. Your faith throughout this has been incredible and such an inspiration to me. And to see the results of your faith is so awesome. (not the actual video, just the soundtrack to it. I was reminded of it reading this post. Corrinne May - On My Way)

Ginelle Flores on November 6, 2010 at 2:14 PM said...

Wow...I can't describe what I felt reading this...
Wrenn is such a beautiful little fighter i'm sure she learned it from her family :)
I don't know what it feels like to be in your shoes i'm only 16 years old but what I know is that you and Wrenn are strong, stronger than you ever thought you were.
you go girl!


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