Stripes!

Another beautiful day for a family walk.

Pumpkin painting!

Two Months

Dear Lydia,

Two months ago today you were born. That was the most wonderful and frightening day of my whole life. Nothing was what we thought or dreamed it would be, except that your face was just as beautiful as I imagined it would be. You didn’t move. You didn’t cry. But you were so lovely.

Two months have gone by. I should be writing all the new things you’ve learned to do in two months, but that isn’t the kind of baby you are or the kind of letter this is. I want to tell you what I’ve learned so far from being your mama. Everyone always told me that having a baby would change my life forever, and you, in two short months, have done just that.

I have learned how to give a tiny little girl a bath. The first bath I ever gave you took about forty five minutes. I’ve got it down to about ten now. OK. Maybe twenty. It’s one of my favorite things to do with you because you wake up so much and look all around. You move your arms up over your head and look like you’re about to fly away. You also rock a towel with a duck head better than any baby I’ve ever seen.

I’ve learned how to hold and snuggle you just right so that you can breathe the best. I put you on your side, snuggle you into the center of my chest, just high enough that your head tucks in under my chin, and hold my breath to feel your heart beat.

I’ve learned how to tell when you’re about to have a seizure. You start to breathe really hard and fast and pull your legs up. I’m glad that I learned this, because I can scoop you up and hold you close so you won’t be as scared. And so I won’t be as scared.

I’ve learned more from you about unconditional love then from any person I’ve ever met. When I was pregnant with you, I began to learn about my own ability to love, but I also learned so much about the way God loves me. Your birth wasn’t the end of those lessons. I can’t imagine there being more love than the love I have for you - I would give all of my life to give you a chance to have one too - but every time I look at your face, I remember the deep love the Father has for me. This love has become more clear to me in many ways, but it’s too much to tell you here.

I’ve known for a while how it feels to be sad and even completely heartbroken. But I begin now to know what sorrow feels like. In knowing that, I’ve also learned what joy in the midst of sorrows is really all about.

You’ve taught me how to live each day for itself, knowing that no days are promised to us.

You’ve taught me that God doesn’t promise us health or even healing on this earth. But He promises to be with us until the end of the age. Call me crazy, but I KNOW He is with you. I can see it in your eyes. Looking in your eyes, I know He’s with me too.

I don’t know if I can say yet that I’m thankful for the way you are because of what it has taught me. I don’t know if I’ll ever be able to say that and truly mean it. But, I know that I am thankful for you and that these past two months, though the most difficult, have also been the best of my life.

Happy Birthday, sweet baby.

Love,
Mama

Post Open House Update

You people are awesome. Thank you so much to all of you who came to meet Lydia. One of our nurses, Janice, said that Lydia does so well because she knows how loved she is and yesterday was an incredible testament to how loved one little girl can be. I wish there was more to say than thank you, but there’s nothing else to say. So, thank you.

Thanks also to everyone who wanted to come but didn’t because of sickness. We really appreciate you honoring our attempt to keep Lydia as healthy as possible.

Special thanks to our family and friends who did lots of preparing for everyone to come.

Oh hey, it SNOWED last night! What in the world was that? You all are doubly awesome for trekking out in freakish weather.

She’s had a few episodes today where her oxygen dropped, but she’s still hanging in and we are too.

Thank you again and again - even if you didn’t come, thank you for your love and prayers. We’re constantly amazed and overwhelmed by the support from our various communities...and the communities of the people in our communities. Yeah. Figure that one out.

We didn’t really take pictures of the open house, because I’m the picture taker and I had a super-cute baby to hold. But, here are pictures of Lydia in her party dress!

This is how she was almost the entire open house.

This is how she was the entire car ride home.

Pretty party dress!

There were tights and a petticoat involved.

Of course, she was wide awake as soon as I put her in her pajamas.

Open House Tonight

OK, people. We’re on for tonight. I know it’s cold and rainy and maybe you feel like too many people are probably going to be there, so you shouldn’t bother coming. BUT YOU SHOULD TOTALLY COME. OK? OK.

Just real quick, she’s having a little bit more of a rough day. She’s had a couple seizures with desats today, but nothing too severe. We just want you to be prepared. The seizures aren’t particularly scary to watch. She stops breathing and there is a jerking motion in her legs or face. She’s been recovering fine from all the episodes so far, and we’re expecting that will continue through this evening.

Again, we really hope to see you.

Jane! Get me off this crazy thing!

Our child is insane. Or incredible. It’s difficult to tell which at this point.

After three days straight of seizures, last night (much to everyone’s surprise) she had no noticeable seizures and no desats. Today, she had some slight facial twitching, but again, her oxygen levels were perfect the entire time. We are baffled. Baffled, but happy to have more unexpected good days.

To add to the insanity, our pediatrician came to check on Lydia a couple days ago and noticed that her liver seemed bigger than it was the last time she was here. This had us concerned because liver failure is a very real possibility and we want to keep Lydia as far away from that experience as possible. Today we had some blood drawn and we were thinking that they were going to come back and tell us that her liver was failing and internal bleeding was imminent. SURPRISE! Her liver is still in great shape and she’s not in danger of liver failure at this point.


To quote our friend Lisa Avery after hearing this news, “I WANT OFF THE ROLLER COASTER!”

We feel the same way.

We’re still feeling hopeful for the open house tomorrow. Of course, I’m feeling a little like we’re setting all of this up like we would set up for a visiting dignitary, but whatever. We really want people to come see her (and us!) and she’s got a really pretty new dress to wear to impress you all. Check back tomorrow for confirmation, but I think we’ll be on.

Our God’s love and compassion for us is overwhelming and we continue to be thankful for each of these days, knowing that each one is a blessing.

Smooches from Aunt Lisa!

Simon loves Lydia.

All bundled up for a walk!

Update - October 12

So, remember that last update when I was all, “Lydia’s doing SO well!”? All day yesterday and through the night she was having seizures accompanied by desats. She’s had one every hour for the past twenty four hours. We did not get much sleep last night. It’s hard to know when one of the desats will be the last one and we want to be with her through everything.

In spite of the not good day, we’re going to try to proceed with plans for an open house. It will be held on Thursday, October 15 from 6pm-8pm at my parent’s house. Even though we know it might inhibit several people from coming, we’re asking that if you’re sick you not come. We’re also requesting that no children under the age of twelve come. We’re trying to keep sickness and germs away from her, since any kind of cold would be pretty devastating to her.

We’d also like to ask that no one bring gifts. I know this is terribly contrary to what people do when they come to see a baby, but we really just want to see you and have you meet Lydia - gifts aren’t necessary. And, if we’re being honest, getting gifts for her makes us sad.

We’re hoping a lot of people will come to meet our sweet girl. Like I said in a previous note, we’re amazed how many people love her without even knowing her. All of these plans are contingent on how well she does the next few days, especially Thursday. We’ll update on Thursday and ask that you check to make sure we’re still on.

We’re really excited to give Lydia this opportunity to meet everyone and to have you all meet her. If you have any questions, shoot me or Micah a message or e-mail and we’ll hopefully get everything figured out.

Hope to see you Thursday!