Thursday, February 24, 2011

On Edge

Monday, we go back to the doctor to look at our sweet baby McKinley again. I can NOT tell you how ready I am for this appointment. I feel like, Craig and I have been able to process what is going on, and now have some more intelligent questions, instead of the blank stares that we were able to give Dr. Stanley last time, as he tried to explain our sweet little girl's diagnosis.

Sometimes as a ministers wife, I feel the pressure to have it all together. Goodness, those of you that REALLY know me, know that I am what you see is what you get.. and can definitely lean towards the emotional side. I feel like people expect me to be "alright" all the time. (I am sure they DONT, but thats how I feel). I mean, I DO know the truth. I know that McKinley's diagnosis came as no surprise to God, in fact, He made her. And He made her perfect. I know this. I know that He is the ultimate Healer. I know that He loves her WAY more than Craig and I ever could (which, by the way is WAAAAY hard to imagine!). I know that God believes that Craig and I can handle this, He chose us as her parents (and I am so thankful that He did) And I know that His most perfect will is going to be done in her life. Believe me, these are the truths that Craig and I are hanging onto. BUT, its still really sad. I absolutely hate that my baby girl is sick. It is such a wierd feeling just going about my life, knowing that she is growing and developing inside my belly with a hole in her abdomen. I feel like I should be doing something different, something to make her better. But we cant do anything right now. I hate the fact that Craig and I are having to make such difficult decisions for our little girl, knowing that as soon as she enters the world, she is going to face so many more challenges. (While I hate it, I also am thankful that we live in a day where ultrasound can pick this up, and we can plan). This may sound little and insignificant, but I am sad that Jackson wont be able to meet his baby sister for a long while. It makes me sad that when Jackson comes to see me in the hospital, he will just see his mommy in the hospital and not really understand that his baby sister is there.

So, although I hold onto such important truths.. I am still overwhelmed and really sad.

As I have said before, I am choosing to not do research. There is WAAAAAY too much information on the internet that is false. There is no reason for me to spend my time reading such information, when I have people in my life that I trust for guidance and wisdom in decision making.

The diagnosis that McKinley has is very rare. In one study that my friend Mindy was able to research for me.. out of 40,000 pregnant women, only 38 had omphalecele and 19 of those were aborted. Craig and I have had MANY people come and tell us about their neices/nephews/granddaughters/grandsons/friends children "who had the same thing that McKinley has and they are fine". And while we appreciate the encouragement and are so thankful that their loved ones are fine.. chances are, they didnt have what McKinley has.

Two of my best friends from college, Dara and Stacy have given me some really valuable information. Stacy, worked in the NICU at Vanderbilt Childrens Hospital, and just talking to her about her TRUE experience with the diagnosis was so encouraging. She saw many things, and she was very careful in what she told me. But she offered really really really great advice. I just feel so thankful. I do just wish I could have her come down and take care of my baby when she gets here.

After doing pretty thorough research on Childrens and Baptist, Craig and I are leaning towards having McKinley at Childrens. Because of the diagnosis, we believe the nurses at Childrens will have a higher likely hood of treating babies with Omphaleceles than nurses at Baptist. They also have a Village NICU, where when McKinley starts getting better, I can actually sleep in the same room with her. Can I please tell you what a comfort that is to me?! Also, my friend, Mindy and her husband have so generously opened their home for Craig and I to stay during McKinley's stay at Childrens. Chris is in med school, so they live approximately 5 minutes from the hospital. What a blessing. Obviously, we will continue talking to Dr. Stanley and Dr. Wilks about what they think will be best, but we do feel like Childrens will be the best fit for us at this time.

We have a list of 3 surgeons that we are interested in doing McKinley's surgery. I am interested in talking to Dr. Stanley about how that process goes. We dont know if there is a particular surgeon who specializes in these surgeries or if we will get a choice. We are thankful for people who were able to share their personal experiences with each of these 3 surgeons. We do believe that God will place the perfect surgeon in McKinley's life. We are already praying for wisdom for this doctor.

We are overwhelmed by the amount of concern for our family during the difficult time. Craig and I can not begin to express what the phone calls/texts/and cards mean to us. Knowing that people are genuinely lifting up our baby girl to the Father is such a blessing. One of our youth workers started a group on facebook called "Praying for McKinley Beth Smith", where people are able to post their prayers for our family. I cant read through these prayers without crying. every. single. time. If you have not joined, please feel free to!

Craig and I decided that we are going to make a book for McKinley with all the prayers that have been written for her while she was in the womb (and after.. during surgery and recovery). We will be printing facebook messages/ wall posts, texts, etc... so she will be able to fully understand about the prayers and love for her before she was even born.

Thank you friends for everything that you are doing for our family! Keep praying for our little girl!


mckenziegordon said...

I've been meaning to send you a message about this but I was in the room when McKinley was prayed for at the Super Summer Exec. Staff retreat and it was precious! She is so loved already. And so are you guys! Thanks for being so honest and know that its ok not to feel ok. You shouldn't feel ok. I know I wouldn't!

Stacy said...

I don't think that anything you are thinking/feeling is bad or wrong. You have to deal with and process McKinley's diagnosis, that all of that is just part of it. I do think it will get better, it is just part of it. I totally get the part about Jackson not seeing her right away, I would be sad about that too. But the good thing is, he doesn't realize how it is "supposed" to be, ya know? I SO wish I could take care of her when she is born!!! I will definitely be there for a visit though!!!

Erin said...

I agree with Stacy. Process and think and grieve and hope all in yours and God's timing. This is a journey you've been chosen to travel, and He will hold you and your family up. I know it. Prayers for you.

Julie said...

I think I have told you before, but we met Gracie in the Children's NICU and she stayed in the village too!! We loved it. The village allowed us to have hands on with Gracie while still having the comfort of the monitors and professionals. I have heard some people speak a little down on Children's BUT I can tell you, our expereince was AMAZING! The care and dedication they give is fabulous. I think some of those who talk down are those who may not have as much experience. We loved every nurse and doctor we met. I stayed in the room with Gracie in the village. Take an extra blanket! I froze! I know you can't have visitors right away and may not want to when it comes, but at least I know exactly where you will be, just in case. WE LOVE ALL FOUR OF YOU!!!

Andi said...

Danielle, there are no words I can give you. They are all trite and inadequate. Just know you are in my prayers.

Emily said...

Thinking of you, Danielle. God sure gave your little girl to the RIGHT parents who are thinking and praying through every angle, to get the best care for her.