Thursday, November 04, 2010

Our little family is in that crazy surreal place that feels unfortunately familiar. Where everyday issues feel so stupid and trivial (because they ARE!) and yet I keep telling myself that by Thanksgiving...or maybe Christmas...or maybe much, much sooner...things will be better, things will be one way or the other...and anything is better than this.

Lily is still having a hard time.

They thought maybe her pneumonia was worse, or maybe she had developed an infection on top of it, so they did an x-ray and echo, as I was hoping they would. The new echo showed her PDA is still not closed and also showed some more turbulence in her heart. The cardiologist came up and explained that it appears that there may be some narrowing of her pulmonary vessels or a sort of "shelf" of tissue in her heart that should have been reabsorbed in the embryonic phase but wasn't, and is partially blocking the return of blood from her lungs. This has caused some congestion and high pressure, and so the blood is backing up into her lung tissue, and extra fluid is gathering in her lungs and other tissues. To me this means she is in heart failure, although the nurse, after calling it that, corrected himself and called it...pulmonary return....I can't remember, it's heart failure. (I've always hated heart stuff, ever since nursing school.) Also it seems that giving her extra oxygen over the past week has made things worse by flooding her lungs with more blood and therefore more congestion. So Lily is looking pale and is working harder to breath. Her hands, feet and face are puffy. She is tired but woke up for a long time today and looked around and pulled her little hand out of mine when I held it too long, just like any kid of mine would.
Lily will have a heart catheterization tomorrow afternoon. This just means they will snake a catheter through a vein in her leg up to her heart to explore and squirt dye around and measure pressures. After that they will know whether there is something that can be fixed surgically or not, and we will discuss the next step. Even if they feel surgery is possible, there is a good chance we will not put her through it. We hope that when the time comes we will be guided by God and the doctors and Lily as to what to do.
So it seems very strange that Zar and I are sitting on the couch at home with Ava after watching "How to Train Your Dragon" and putting Ella to bed, and just waiting for tomorrow. We've both cried a bunch today and had serious discussions about life or death and now we're just waiting. Once in awhile we look at each other and just smile sadly but until we get more information there is nothing left to say. Surreal and familiar.
And I'm 30.
Today I'm Grateful for:
The girls sleeping in until almost 9 this morning so I was able to shower all on my own and dry my hair.
The fact that it was my birthday so every few minutes my phone would beep with a reminder that people were thinking of us, even if only because facebook prompted them to do so.
That Zar and the girls and I got to have a nice little lunch together--grilled cheese and diet coke for me--because our birthday dinner out was canceled.
That our families are so wonderful and close knit and available to watch Ella and Ava so we could spend the afternoon with Lily and talk to the doctors.
Friends who show up to support us or even just call and let us know they are praying for us.
Neighbors and friends who have supplied us with dinners and I haven't had to worry about feeding the family at all since coming home.
That when passing the Sinclair Station today Ella yelled "MOM! Dina-saw! Rarrr!"
That when I walked into my moms all red and puffy faced, Ava still looked up and smiled her big gorgeous smile and squealed, and Ella yelled "MOM! MINNIE!"
That Ava's hair is so gorgeous.
That I took the girls to the playground this morning and Ella spent a good amount of time going down the slide and then running back to me with a hug and saying "Have fun!" and then running back to the slide.
That it was warm and clear and gorgeous today.
That Lily was awake for a couple hours today and looked at me and held my hand and then yanked it away.
That we had an excellent nurse today.
That the people at Primary's are willing to treat Lily and not deny her any possible treatment because of her trisomy, but also recognize that there are worse things than death.
For Faith. For Hymns. For Prayers. For Hope.
That Lily has a "cinnamon roll" belly button like her big sister did, but Lily's is HUGE and we call it a Cinn-A-BON."
That I feel healthy and strong and don't feel like I just had major abdominal surgery.
For spinach smoothies.
That despite everything I'm still sleeping well.
For my sweet strong husband and our sweet strong marriage and that with all we've been through it's always brought us closer together.
For this goofy blog and all the support I get from the people who read it.
That my 20s are over.
That I know Lily is in God's hands and as afraid as I am of making big life and death decisions, I know that really they are God's and not mine and as hard as some of my life experiences have been, they have made me better, made my marriage better, made me much stronger and my life is incredibly rich and full.
That Lily and Charlotte and Ella and Ava are forever my daughters and one day we will all be together again, and how wonderful it will be to see my girls again and how familiar they will be to me.
That if Lily is only meant to be here with us for a short time longer, that her suffering will be over and she will have earned her crown and glory and be with her big sister watching over us and letting us know they are close.
That I know Lily is a miracle no matter what tomorrow brings.

I'm too tired and blurry eyed tonight to adequately explain all I'm feeling. But along with the fear and aching and sorrow and grief, I am so full of gratitude for all I have, including my sweet lil' Lily-pie.

11 comments:

Bev Aiken said...

Have put and kept your names on the prayer roll. I am certainly sure that she is already on there, but I figured one more time can't hurt!!!

Anonymous said...

Dear Darling Erin and Zar,

My heart goes out to you all the time but it is hard to put just the right words on paper. I read other comments thinking I couldn't have said it better.We are all thinking and praying for you and for sweet precious Lily.

Aunt LeJeune

Mary said...

...and Mimi and the Eggertsens are thinking about all of you and sending our love you way and our prayers heavenward, while marveling at the strength and courage you are all teaching us about.

Lacey said...

Happy Birthday Erin!
Sweet Lily, thinking about you today, praying for guidance, and for a smooth cath!

MK said...

Thank you for sharing your thoughts with us, I know this is a painful time and I wish it weren't so. I think about Lily everyday and hope that she will be at peace - whatever that is and I hope you know that you have a lot of support and love from the BT community. Your grace and bravery are just amazing.

Jenny said...

Oh my heart aches for you. I'd imagine even if you weren't tired and blurry eyed it'd be near impossible to fully express how you're feeling. Some words...it's just never enough to fully express ourselves. We're praying for you, sweet Lily, and your amazing family.

Anonymous said...

Gary and I also are following Lily's struggles, dear Erin. We are proud to know you. We love you and Zar and your little family, Susan Whitney

Sally Jensen said...

Once again, you have somehow strengthened me as I was praying for God to strengthen you. I will keep praying. Love, Sally

Anonymous said...

May you have special blessings of peace as these decisions and procedures come to pass. Thinking of you and your sweet darling four girls with love and admiration and many prayers in your behalf. You have such great strength, it is an inspiration to us all, and we love you.

xoxoCarolyn H.

ANewKindOfPerfect said...

I hope that the catheterization gives them a clear picture of what is going on with little Lily. Your family is in my thoughts.

Becky said...

I love you.