Monday, November 30, 2009

Little Miracles

The past couple of nights, Lydia's oxygen has been dropping ever-so-slightly - not dangerous at all, just enough to make the alarm on her monitor go off and wake us up multiple times a night. Yesterday, we were exhausted from a couple days of not enough sleep. Turns out the new parent not sleeping thing, compounded with the general emotional insanity that we're undergoing on a daily basis is not a great combo.

Last night before we went to bed, we prayed for Lydia as we always do. Really feeling the need for a good night's sleep, I snuck back into her room after she was asleep to say an extra prayer. It was something along these lines: "God, I know that you might never do a miracle and heal our girl. I'm still working on accepting that. In the meantime, would you please make a tiny miracle tonight and keep her oxygen up so that we can sleep?"

AND HE DID.

That God. He is awesome.

In seizure news, she's been doing better the past couple of days. Since she's slowly gaining weight, we've been able to up her meds a little and now that we're a week into that, the scary seizures have stopped. She slept peacefully much of today and though she still had a few seizures it was nothing super-scary.

So there you go. Two little miracles for us.

Hope you see some little miracles in your life today.


Saturday, November 28, 2009

Commencement of Christmastime

A lot of terribly exciting things happened this week into the weekend. Before I get to that, a quick update. Lydia has continued to have seizures. They are manifesting in a new way now. Her eyes get really wide, her head and tongue twitch and then she starts to scream. It's starting to get really upsetting to us, because even though we've been told she isn't aware, she seems so scared when they happen. We would ask you to join with us in praying that the seizures would stop, but if they don't, please pray that the Holy Spirit will be present with her and that she would not be afraid while she seizes.

OK - enough sad. Here are some fun things we did this week!

We started off by going to Jones Tree Farm to get our Christmas tree! We weren't sure if we would be able to bring Lydia, but we tested her out in the Baby Bjorn and she was quite comfy! It was a little drizzly, so she was covered in a blanket and then waterproof jacket to keep her dry.


We found a perfect tree, despite the rain!



Sweet girl with the Christmas trees!


Then came the decorating. Lydia was a little tired post-Thanksgiving, so she chilled on her pillow in her AWESOME hat made by her Aunt Carola.


We got out our stockings made by Lydia's Great-Grandma Richards, and we were so happy to hang up Lydia's stocking with ours this year!



This is Lydia's first Christmas ornament, given to her by her Grandma and Grandpa Huff.


These are all of our "Baby's First Christmas" ornaments. Mine is the pink one in the back, Lydia's is in the middle, and Micah's is the white one in the front.


She was really excited, as you can see.


All of this preparation was necessary because we had a very special guest coming to visit Lydia all the way from THE NORTH POLE!


And he brought his lovely wife!



Smooches from Santa.



This was one of those things that I really wanted to do with Lydia. Thank you to Paul and Anita...I mean Mr. and Mrs. Claus... for helping us to make some incredible Christmas memories that we might not have had otherwise!

Thursday, November 26, 2009

Thanksgiving

Today was a crazy day. We had some scary moments with Lydia, including a minute or two when she stopped breathing. But amazingly, we made it to both family Thanksgivings.

We started at Micah's parents where Lydia got to snuggle again with her Aunt Liz.

And take a nap on Grandma and Grandpa's bed.

And see Great-Grandma Thompson again!

And be generally photographed with awesome people.

(Great-Uncle Doug)

Then we jumped over to my Uncle Jimmy's house to have dessert with my family where Lydia was photographed with more awesome people.

(Cousin Jessica)

(Great-Uncle Danny)

(Cousin Shannon, Jessica and Aunt Amy)


I have so much to be thankful for. I am alive. My husband is alive. My sweet baby girl is alive. And even though this life is promised to none of us, we have the hope and promise of eternal life in heaven and a Savior who died to give us that life.

This song by Nichole Nordeman is another one I listen to on repeat during the bad days and pretty much sums up my general thoughts these days. I hope you all found things to be thankful for today.

When the sun starts to rise
And I open my eyes You are good, so good.
In the heat of the day

With each stone that I lay

You are good, so good.

With every breath I take in

I'll tell you I'm grateful again.

When the moon climbs high

Before each kiss goodnight
You are good.

When the road starts to turn

Around each bend I've learned
You are good, so good.
And when somebody's hand
Holds me up, helps me stand

You are so good.

With every breath I take in
I'll tell You I'm grateful again.

'Cause its more than enough
Just to know I am loved And You are good.

When it's dark and it's cold

And I can't feel my soul
You are so good.
When the world is gone gray

And the rain's here to stay
You are still good.
With every breath I take in
I'll tell You I am grateful again
.
And the storm my swell

Even then it's well and You are good.

How can I thank You?
What can I bring?
What can these poor hands
Lay at the feet of a King?
I'll sing You a love song.

It's all that I have to tell You I'm grateful
For holding my life in Your Hands.

Tuesday, November 24, 2009

Lydia has been having some more substantial seizures the past couple of days. She breathes through them all, but she twitches pretty dramatically (compared to what we've seen her do) and she has been crying more often. We can't tell if this is just "normal" baby crying or if something is wrong. It's getting a little disconcerting. Why can't babies TALK? We just keep praying that the crying isn't because she's in pain. Please join us in that prayer - we don't want her to be in pain.

We're looking forward to the holidays. It's a gift that she's here with us. We're planning to decorate the house for Christmas and my sister's friend's husband is dressing up as Santa and coming over so we can take pictures of Lydia with Santa without having to go to the mall. There are many things to look forward to in the coming days and weeks.

As excited as we are, we're also tired. It's tough never knowing what each day will bring, knowing that looming in the distance is the big awful thing that we're always sub-consciously waiting to have happen. As much as we try to keep ourselves living in the moment, it's getting harder and harder.

We're planning to get a Christmas tree this weekend and we tried putting Lydia in her Baby Bjorn to see if she'd be OK to ride around in that. She loved it and I was so excited. Then I burst into tears. The compounded emotions of every good thing that happens is overwhelming. I'm thrilled that she can come with us to get a Christmas tree, but that only reminds me that I get so excited because she's sick and may never do it again.

Even though there are times when it's hard to pray or to know what to pray, we keep looking to Him for strength for each day.

Sunday, November 22, 2009

Micah

Today is Micah's birthday. Maybe this is cheesy, but I don't care. I love this man.


While I was in labor, he made funny faces like this and let me take his picture.

This was the first time Micah held Lydia.


Every night before we left her, he put his hand through the isolette door and prayed for her.


Typical dad, harassing the baby.



This is one of my very favorite pictures. Lydia resting peacefully in the arms of her papa, who loves her and provides for her.

Not just any man could have been Lydia's father. God knew before you were born that your life and experiences would make you into the perfect man to be her father. I can't imagine walking through this time without you. You make every day better and every day you make me proud to be your wife.

Happy birthday.

Friday, November 20, 2009

Three Months

Dear Lydia,

THREE MONTHS! Every month marker we hit, I count it a miracle. Actually, every week marker we hit, I count it a miracle. You breathe. You squirm. You sigh. You’re still here. Every day, you are miraculous.

There’s a lot you can learn about a person, even a small one, in a month. For example, we’ve learned that, like your mama, you do not like being woken up. You get quite the attitude and sometimes, you even cry. This, for most babies, is no big deal but as crying is a rarity with you, it’s pretty crazy you started doing this.

Speaking of having an attitude, you have definite opinions about that nasal cannula. One night, while Aunt Amy was holding you, you discovered that if you turned your head really fast, the prongs would pop out of your nose. We thought it was just a coincidence, until we put them in, you grimaced and turned your head again to knock them out. Hence the need for stylish and functional headbands.

We’ve also learned that you are ticklish! Your papa discovered this and for some reason, you only respond when he does it. You pull your feet up and throw your arms up over your head. We like to think this is how you laugh.

I’ve loved learning all of these little things about you. When things were looking really grim when we first brought you home, the thought of letting you go was so hard for me partly because I didn’t feel like I knew you at all. How could I say good-by to someone I was just starting to say hello to? Of course, now that I know all these things about you it’s so much more to miss if Jesus decides He wants you to be in heaven. But I would rather know you and deal with the hurt should it come than never have know you.

Your papa and I were talking last night as we were falling asleep, remembering three months ago, the night you were born. We decided that it feels like another lifetime that neither of us really remembers anymore. I asked him if he would take it all back if he could. He said that he would rather have had these three months with you than to never have had you at all. I feel the same. If I could have chosen between a life of only joy without you or a life of joy and sorrow with you, I would choose you every time. Hands down. No questions asked.

Even though you aren’t what I expected, you are still the answer to the greatest and most sincere prayers I ever prayed. Even if I can’t keep you, your life will always be a reminder that God heard me and answered me in His perfect time and perfect way. Even though it hurts me, I will always be thankful that your life pushes me closer and closer to Jesus.

You are a miracle, baby.

I love you.

Mama



Thursday, November 19, 2009


Lydia meets Cathy!


Snuggles from Great-Grandpa Roy.



Can't you just hear her say, "Really, Dad? Really?"


Love those little girl lips.

Monday, November 16, 2009

Uneventful

The past couple of days have been excellent and non-eventful. Maybe non-eventful isn't the right word. We went out to dinner with my parents and Lydia slept the entire time in her carseat. We also took her to church for the second time, and she slept the entire time in her carseat. She did, despite the sleeping, look super-amazing in a lovely new dress from Aunt Amy.


We also got to see Rachele again. She was Lydia's primary care nurse at Yale and took such wonderful care of her. If it wasn't for Rachele, we wouldn't have had the necessary skills to make us un-afraid to bring Lydia home. It was wonderful to see her again and for her to hold Lydia in a non-medical setting. Lydia just stared at her the entire time.


We also got some new pajamas. Lydia actually had them in a smaller size that she has since grown out of. We got a new pair from the ladies at Beacon Hill church and we're so excited because they are the cutest pajamas ever.



The other day when we first put a bow in Lydia's hair (and by "in her hair" I mean "on her head") I made this video.

video

It's been a good couple of days.

Sunday, November 15, 2009

Before Lydia

I've been thinking a lot about the days before we found out that I was pregnant with Lydia. The clear planning on God's behalf amazes me. I know without a doubt it was the struggle of the past years and the way God showed Himself faithful that causes me to trust Him now.

Micah and I had been trying without success for two years to get pregnant. I know this isn't a long time in the grand scheme of things, but it felt endless while we were walking through it. We finally scheduled an appointment with a fertility doctor to pursue our final options. Throughout our journey to this point, God was revealing things to me about Him and about myself and there was a constant question I could hear Him asking me: "Jen, if I say 'no' forever, am I enough for you?" I kept fighting with Him but in time, He would win me over. He always does.

A couple weeks before the scheduled appointment, my mom went the hospital for a simple procedure. What was supposed to be a simple, quick surgery turned into a life-saving surgery. They discovered that mom had ovarian cancer. If you know much about cancer, you know that ovarian cancer is normally not detected in time and many women do not survive. They were confident that they got the cancer out completely, but this shook our family pretty severely. Mom would have to do chemo to make sure the cancer was gone and we had a long road ahead.

Mom's surgery was on a Monday. Thursday she came home from the hospital. Also on Thursday, I took a pregnancy test - one of about a million. I'd never peed on any stick and had it come out positive. This one did. I won't describe the utter HYSTERIA that ensued but it was substantial. If you want to know, ask my friend Lisa. She was the first person I called. I called my family to tell them and there was joy in a time we most needed it.

Days later, after I'd had time to process I could finally see God's timing for what it was. Through all of my begging, crying, anger, He had a bigger plan. A greater purpose. A perfect time.

I'm trying now to hold on to this knowledge I've gained. In the midst of our joy and pain now as we watch our little girl, we beg Him for healing. And again, I hear Him say, "If I say 'no' forever, am I enough for you?" He's proven in the past that He is, but I struggle now more than ever with what it seems He's asking me to let go of.

Looking at the past, I do my best to put my trust in a God who has never left me and who has responded my prayers in His perfect time and in His perfect way.

This song by Tenth Avenue North is one that I put on repeat for days at a time. It helps me remember where God is in the midst of my struggles - right in the middle of it with me.


Saturday, November 14, 2009

Lydia's new look!




Today we discovered that hairbands are lovely and functional! The hold the cannula on GREAT so we don't have to worry about taping her face anymore.


She's getting chubby! I love this picture because you can see how blue her eyes are.



This rainy day was the perfect day to stay curled up in her daddy's arms,
and that's just what she did.

Wednesday, November 11, 2009

I got an e-mail yesterday from my Grandpa Roy. He's been sending us e-mails every week or so to encourage us as we're walking through this time. I think he thinks it doesn't help, but it always does. The one he sent yesterday was maybe my favorite so far. He included the words to his mom's favorite hymn. They were such a blessing to me and I wanted to share them with you.

He giveth more grace when the burdens grow greater;
He sendeth more strength when the labors increase.
To added affliction He addeth His mercy;
To multiplied trials, His multiplied peace.

When we have exhausted our store of endurance,
When our strength has failed ere the day is half done,
When we reach the end of our hoarded resources,
Our Father's full giving is only begun.

His love has no limit; His grace has no measure,
His power has no boundary known unto men.
For out of His infinite riches in Jesus,
He giveth, and giveth, and giveth again.

For all those of you reading who have blogs, my friend Amber (www.mountainsmove.blogspot.com) made a "Praying for Lydia" button you can add to your blog, if you'd like. Here it is:The code for it is over on her blog, so add one if you're praying for our girl. Thanks, Amber! :)

Tuesday, November 10, 2009

Today was so different than I thought it would be. Her g-tube site was bleeding today when we took her in. After eight weeks of no problems, it figures that two days before we had to switch the g-tube to the button, it would look horrible. I was panicky, thinking that it was infected and that they would be astounded that we would let it get so bad and that we would have to stay in the hospital so they could give her anti-biotics. I'm not sure...I think I might be a worrier. Maybe.

We went up to Yale and before we took her for the procedure, we stopped up at the NICU. We saw the wonderful Bruna who was our care manager and got us all set up to bring Lydia home. We also saw Dr. Bizzaro who was the first doctor to see her at Yale. He started the big push to get Lydia home to us quickly. It was great to be able to bring her back to see them! We didn't expect she'd be here long enough to take her to visit. Thank you both (I hope you're reading!) for taking such good care of Lydia and of us!

We brought her down and only waited for a few minutes. Those were enjoyable minutes because they had Babe on the TV. Awesome. Again, I was FREAKING OUT. The physicians assistant came in and took one look at her site and said, "This looks awesome!" I was pleasantly shocked. Apparently, she's seen some pretty nasty stuff.

She pulled out the tube, popped in the button and we were done. It was ridiculously easy. It went perfectly. Here are some pictures!


Here she is sleeping in her car seat, waiting to go in.

Papa keeping an eye on her.

Button in!

Zonked out at home after a long day! Look at the chubby cheeks!

Meanwhile, we also found out she is ticklish! She pulls her legs up and gets a cute look on her face like she maybe wants to laugh. We can't tell for sure, but we think she's happy. Sorry it's sideways.


video

Monday, November 9, 2009

Cardiology Appointment

Lydia had a cardiology appointment today. I was nervous. We were late and she had red marks on her face from her cannula and she has a little cradle cap that's peeling and in my head I was yelling, "THEY ARE GOING TO THINK YOU ARE A HORRIBLE PARENT." Some of us are a little insane. Mostly me.

We went into the office, and since they had been warned we were coming and shouldn't hang out in a waiting room with lots of sick people, they brought us immediately into the exam room. From there, we were taken to an ultrasound room. I told Lydia about all the times I'd had an ultrasound when she was still in my belly and how long they looked at her heart when she was still inside. She did not enjoy the jelly all over her and squirmed around.

After the ultrasound we took her back to the exam room and they weighed her (8lbs 8oz) and checked her height (23.5 inches). She's growing, which is great for us to see!

The cardiologist came in and gave us the news that the hole in her heart is already starting to heal. They showed us that tissue was already starting to grow over the hole. The doctor said that while the hole would probably never close all the way, it would continue to close until it became a non-issue. She said the chances that Lydia would go into congestive heart-failure were practically zero. We weren't super worried about it, but it was still a possibility and we're happy to no longer have to worry about it.

HOORAY!

We stopped in to visit the NICU since we were already there. We saw several of our nurses and all three of the neo-natologists. It was awesome to have them see the little girl that none of us thought would be here this long and to have them say, "She's so big! She looks so good!" and all the things we wanted to hear.

Our God. He is awesome.

Tomorrow is a trip to Yale to get her "button" put in. This whole g-tube thing still really scares me. Please pray for peace and a smooth procedure.

And look! Look how many people are in prayer for our girl! I can't tell you how encouraged we have been to watch those number go up, up, up all day long. If you haven't added yourself to our map, go to it! We're amazed by how we are being interceded for and are so thankful!

Sunday, November 8, 2009

Prayers for Lydia

If you look on the right hand of the blog, we've added a new feature. It's a map that we're calling "Prayers for Lydia." We are amazed and blessed to be covered in prayer by people all around the world. We want everyone who visits our blog to know how many people are lifting our girl in prayer.

For those who believe, we want you to know how many brothers and sisters are joining together for the same reason. We want you to be encouraged by the amazing power God gives His body here on earth!

For those who don't believe, we want to be a testimony to the fact that following God includes us in a family that is loving and willing to intercede on our behalf when we are in need.

We hope that you'll click on the map and follow the prompts to add your location. Don't feel like you have to add your address. Just city and state (and country, if that applies) would be amazing.

If you have any problems, shoot me an e-mail and I'll do my best to guide you through it.

Thanks everyone!

A photos from the past week

Lydia and Patti G.


Stripes!


Snuggles with Em!


Awesome headrest from Grandma Huff.


Ready for our first trip to church!


Pretty dress for church!