Grandma and Grandpa T Visit Me!

Happy Sunday!
We had visitors this weekend! Grandma and Grandpa T came to meet Amelia and celebrate Ford's birthday. He is 31 and officially well into his 30's now. To celebrate, we went out to dinner. It was Amelia's first experience at a restaurant and definitely her first experience around that many people. She seemed amazed, startled and a bit frightened, I don't know if 8 week old babies feel those things, but those were her facial expressions as perceived by us, her nervous parents. Does she hate it here? Is she going to scream? Is she too cold? Should we just get our food to go and avoid any potential baby break downs? No, take a breath, relax, and remember that we are not the first people to ever bring a new baby to a restaurant. Dim lights, the hum of conversation and clanging silverware, lounge music coming from the bar...oh she fell asleep...ahhh. Success.
We had a great weekend with Grandma and Grandpa Turrell who witnessed first hand Amelia's aversion to laying on any flat surface alone during the day. She got worked up a few times, hard enough that her little eyes were able to form her first tears, they weren't substantial enough to fall down her cheeks, but they were there! A happy moment for us but sad for her. :)
She is talking more, she and her Dad have long conversations. When she is not wailing she sure does love to smile. :)
The picture of Amelia features her wearing her U of M onesie on game day again. She is officially the good luck charm for the Wolverines. Since she started wearing it on game day, victory for Michigan. If she keeps growing like she has been, I'm not sure the onesie will last the season...we'll make it work.
Please pray specifically for Amelia's skin on her neck. It's being quite stubborn since this area never sees the light of day...too many rolls! One week from tomorrow is her dermatologist appointment. We need lots of extra prayers this week. Thank you all for keeping her in your thoughts and daily prayers. We are so thankful for each and every one of you and pray for all of you as well.
"For nothing is impossible with God." Luke 1:37
love
Kim, Ford and Amelia

Kissable!

Happy Monday Everyone!
Amelia just wanted to say hello to everyone who keeps up with her sweet little life. She is doing really well. Growing up too fast already it seems (and out, check out her rolls, she's got wrist rolls now). She's 7 weeks already. She's very sturdy (that's as good a word as any I guess). She never really felt quite like an infant to me, she was born older I think, wise beyond her years (weeks maybe). She is the sweetest and we are having so much fun getting to know her. Ford and I laugh about how much we kiss her cheeks. You just can't help it; they are so totally kissable. We have been teaching her how to kiss back. She's really good at it. :) This past weekend we practiced putting her down for naps in her crib, this has not been her favorite thing, sleeping in her crib during the day, but it actually went really well. She did manage a few longish naps in her room once she finally settled down. We also went on a family outing on Sunday to get coffee and peruse the book store. She enjoyed herself immensely at both places, she's a lot like her Dad.
Her skin is doing fairly well, nothing really new to report. She has been really "sloughing" lately on her back, sides and abdomen. Her neck is actually starting to dry up and flake finally. Apparently, some babies can continue this process for quite a while, we've been told some babies peel a few times. We are just praying this skin continues to come off and the new skin underneath remains smooth and healthy. Her face, limbs, bottom, chest and shoulders remain baby soft and smooth. I thank God everyday for this.
It's very hard not to think about the future, that old fear and anxiety has it's way of creeping in sometimes, but each day gets a little easier and for that I am thankful. As we get to know her and her personality, the scariness seems to shrink smaller and smaller as Amelia, the beautiful happy baby and her big personality grows bigger and bigger. This has been a very real and very big lesson in living for each and every day and enjoying each moment. Trust me, it's easier said than done most days, but it's easy to look back and see how much time is wasted on worry. Time that could be spent experiencing a million other things...love and fun, books and music, walks and playing, laughing and kissing big soft cheeks.
We are grateful for the support system you have all been for us these past 7 weeks. I feel so blessed to know that so many people, all over the country really, are praying for her. We have gotten the most amazing e-mails and comments from people who have heard about Amelia and have reached out. It's incredible, God's grace.
Thank you a million times over.
We love you,
Kim

Big Girl!

Big day today! 6 week pediatrician appointment. She got 2 shots, one in each leg. So sad, she cried so hard. :( She weighed in at 12 lbs 13 0z and 23 1/4 inches long! She's is 90th percentile for height and 80th for head circumference. As far as weight, well, she's not even on the curve! She flew right off of it! She is growing like a WEED! The pediatrician said she is a healthy girl all in all. At six weeks, her eye sight is really developing and he talked about visually stimulating her as much as possible. She has really been engaging in eye contact and she smiles socially all the time now, but like Michelle said to me yesterday "she's been smiling her whole life," it's true really. It's the best when she wakes up happy and I go to get from her crib and she breaks out into a "hi mama, I'm so happy to see you" grin. What a way to start the day. :)
We also talked about sleeping habits. It's amazing how this little being can rule the day! She is not so much a fan of sleeping anywhere but on someone or in the Bjorn during the day. However, at night, she's actually cool with her crib. She usually sleeps 5-7 hour stretches at night, last night being one of them. Thank God for this because it was just she and I all day again since Ford worked and went to the Bob Dylan concert at the Ryman (for you Dylan fans out there...Ford used words like "monumental" and "best ever" and "amazing" to describe this concert experience, he said he could even understand the words :) and he recommends catching this tour if you can). Anyway, on the 8th try I was able to finally get her to stay asleep in her crib, wow, a long one.
It's Friday, and Ford is home today and has encouraged me to get out of the house for a while, so here I am blogging...hmmmm.
I will end with a little cuteness involving Amelia's 4 year old cousin Christopher who lives in Michigan. He loves her, he loves her sooo much, I can hardly stand the cuteness. He was here in Nashville when she was born, he got to see her briefly and held her only once and then didn't get to see her again since she was whisked off to the NICU where kids are not allowed to visit. Despite the circumstances, a strong bond formed and she has been on his mind ever since. He sends her mail weekly, usually Michelle doesn't even know what he has put into the envelope before he seals it up. He also sends her regular e-mails which he dictates to Michelle which she in turn types verbatim. In his e-mails he tells her of all the wonderful things they'll do together when he sees her again and how much he loves and misses her. "We will play guys and Play Station...and we will make a fort in the woods and I will protect you so you won't get hurt or anything."
He has not been too excited about going to school these days and after a rough morning on Wednesday, his teacher told him he could bring something from home to keep at school that he could look at any time to make him feel better. Guess what he chose? "I know just the thing, Mom..." Yes, it was a picture of Amelia. Today was show and tell and he was told he could bring in something starting with the letter "A." Guess what he wanted to bring? Yes, again, a picture of Amelia.
Buddies for life.
Love it.
God bless,
Kim, Ford and Amelia
p.s. It's official, I've gotten word, after the last blog involving Little House, that I have officially gone off the deep end...

Half Pint

Look at her little hat, can you stand it? It kind of reminded me of Half Pint's night cap...you know the one.
Remember the days when you'd get home from school, your Mom would be cooking dinner and you had just enough time to catch the latest episode of Little House on the Prairie? Anyone with me? Well, guess what? You can still do that! Every night at 5:00 pm on TV Land, you can catch a rerun of the wholesome family goodness that is Little House. Ford laughs at me, but I love to watch it (secretly I think he loves it too)! Maybe because it reminds me of being little, of a simpler time in my life. Or maybe it's because each show contains an important life lesson, there are many many references to faith and God, there was always a happy ending, and come on...Pa cries without fail in each and every episode. (You know you've cried at more than one episode too...) Call me crazy, but is there any show out there today that can compare? Though most of us get sucked in to at least one reality TV show or another, myself included, it's still sad to me that this has become the norm. Little House was just simple and it always left you feeling pleased, with a feeling of satisfaction, and a sense that everything was going to be alright.
Here I am, 10 pm at night writing a blog about Little House on the Prairie. Most of you probably think I've lost it! Probably so, but in an age of video games, computers, and reality television, it makes you wonder, where are we headed? My hope is full circle, maybe as a society we'll get back to basics eventually. If not in my life time, maybe in Amelia's. In the mean-time, I hope that she finds herself drawn to the simple and good things in life...and I pray that those things find her...and of course I pray for happy endings.
That's it. Good night.
sweet dreams...
love
Kim

Sunday

Sunday walks with my Dad make me smile...

Saturday...the possibilites.

Today is Saturday. Amelia was quite a sleeper last night! She fell asleep around 9:30 pm and when I woke up at 3:30 am, she was still asleep. I actually had to wake her to eat. Then she slept until 7:30 am. Nice work. Ford got up then too. "Are you getting up already?" I asked him. He replied, "It's Saturday, I love Saturdays, the possibilities are endless." He went on,"Saturdays are like taking a trip to Home Depot." He has a theory that men love to go to Home Depot, even when they don't need anything, because of the potential there. It's a vast and seemingly endless warehouse of potential, of things to dream up and build. Interesting theory, yes? Leave it to Ford to find the deep underlying meaning in a trip to Home Depot.
Possibilities and potential, if you think of them in the positive light they are two very nice words for the day I think.
(Especially considering Michigan plays today. Check out Amelia's onesie in the pictures, you can see she's hyped up for the game).
I have to admit, I cling to words like this these days, especially when a doctor speaks them to us. It's very easy to go the other way in your mind however, "it's possible that she has an underlying skin disorder" for example. And since we are in this waiting period, the thoughts tend to go back and forth from the positive and reassuring thoughts of healing to the scary anxiety ridden thoughts that she may have a condition. It's a loss of control, and feeling of helplessness.
So, we turn to prayer day after day. Trust is hard considering our own understanding takes us only so far. That is why we have faith. Where would we be without it? With faith the possibilities and potential are endless...
So, again, complete healing...and for all of those who ask me what I'd like you to pray for specifically...please pray for the areas of skin on her body that aren't quite "normal" looking: her back, sides, abdomen and neck. We are helping these areas along with regular soaks in the tub and lots of Aquaphor but it sure would be nice if these areas cleared up and stayed clear, especially before her next appointment. And that the rest of her stays clear and beautiful of course! Amen.
Love you all, happy Saturday.

Real nice...

Strollin'...

It actually got down into the 60's at night this week! Fall is coming! Needless to say the mornings and evenings are not as scorching as they were in August. So, yesterday we tried out our beautiful new stroller for the first time. Amelia loved every minute. She gazed about for a while until she fell asleep and Ford and I walked and talked as we cruised the neighborhood. A nice family outing. :)
The more I get to know her the more I realize, this kid likes to be on the move! Oh boy! In fact, she is going on a 2 hour nap at this very moment as I carry her around in the Bjorn. She fell asleep on our morning walk and has been sacked out ever since. I haven't given up on naps in the crib by any means but this is a happy alternative and allows me to get other things done. I read somewhere that somebody makes a crib that simulates being in a car going 55 mph. What?
Anyway, here are a few photos of her in her stroller, loving life.
love to you all,
Kim
Mark 11:22-25

Tuesday

Today is Tuesday! It's our long night/day together. I'm sure as weeks go on and she is sleeping more through the night that these days will get easier and easier. Today was 50/50. She cried 50% of the time and didn't cry the other 50%. :) It seemed she was having a growth spurt day because all she wanted to do was eat!! Every day is an adventure!
It's funny how when you're pregnant, everyone shares their pregnancy stories with you and offers their insight and advice. And when you bring your newborn home and try to deal with all of the changes...the stories, insight and advice keep coming. I imagine this continues as children grow as long as mothers, sisters, aunts, and friends have stories and knowledge and advice to pass on. It's a common bond we all share, whether we have children yet or not, and I find it incredibly comforting. Especially comforting to hear that you are not crazy and definitely comforting to know you are not alone. The first thing every woman says to me since her birth is "Kim, you're not crazy, you know that right?!" :) Funny thing is, no matter how many times I hear that, it's always a relief!
It's certainly exciting but overwhelming to deal with the newness of being a first time mom and dealing with the "normal" stuff associated with newborns. However, I never would've imagined I would have gotten the news on her first day of life that there was a genetic issue with her skin, that she would spend her first two weeks of life in the NICU and the future of her condition would remain unknown for some time. As scary, overwhelming, tiring and sad as the whole ordeal was in the hospital, we somehow had to kick it into gear to take care of her throughout her stay in the NICU. Now that she is home and out of immediate danger, we are like any other parents learning how to care for this little one...but there is something more. The waiting, the not knowing, the overwhelming desire to know that she is going to be fine. This "something more" is the hardest for me to accept and I admit that it hasn't been very easy for me. Also, I somehow felt, that because of our circumstances, that I was placed in another category of parenthood. I felt that my experience was different from most people I know and I was angry about it, still am I guess. I have actually felt grief. I grieved for normalcy and grieved for the expectations not met. Somehow the sense of normalcy was snatched away that very first day and I found myself asking why. Why?
Now I am faced with the next big question...what's next? With this question comes fear and anxiety.
I am told, however, that this questioning exists in the hearts and minds of every parent, even if their child doesn't have a genetic skin condition, or any other genetic disorder, or autism, or cancer... when we make the decision to become parents, and God blesses us with a pregnancy, we are still given no guarantees. I found that out on day one. Because we love our children so much, it is easy to forget sometimes that ultimately, they belong to Him.
But when we do make that decision to become parents, we also make the decision to be caregivers, to guide and teach, to wipe tears and share in laughter, to take a step back and ultimately let go...and we make the decision to love unconditionally, just as He loves us.

Ceiling Fans Rule

Hi Everyone!
Amelia here. I just wanted to say hello and tell you how much I love you all. I am so blessed that you all are praying for me. Thank you for caring so much for me.
Oh, my mom and I were just hanging out and she took some pictures of me smiling at my friend the ceiling fan. Hope you are all well and are "having some enjoy."
love
Amelia

Pic(s)

Ok, so I was reprimanded for not including a picture with my post...sorry...apparently things change once dad goes back to work. :) Here's a couple of pictures for your viewing pleasure...

Wow! One Month...

So, yesterday we rolled past the first month. Wow, what a wild few weeks it's been. It feels like we're starting to settle in a little more with each passing day, which I'm sure is a pretty normal adjustment for most parents. Kim and I both seem to feel so much more at ease with all the little nuances of sleeping, eating, and care-giving. Who knew there were so many variables to those things?

We had Amelia weighed on Wednesday...11 pounds 8 ounces. As you can imagine she's developing some beautiful cheeks, and out of nowhere she's also added a second chin. All very kissable and cute of course. She's slept for a six hour stretch last night, yeah! And she seems to be much less fussy with each passing day...although I'm sure we'll still have some sleep deprived moments in the coming months.

It has been a lot of fun getting to know her a little more every day, and we're so glad this blog has become a way for all of you to get to know her too. Thanks for all the support, encouragement, prayers, and love.

All the best,
F, K, and A

September 6

Goodnight Everyone.
I love you.
Amelia

Bjorn Magic

Hello Everyone!
So, yesterday was my first official stay-at-home mom day. On Tuesdays, Ford is gone pretty much from 7:00 am until 9:00 pm (with a few breaks in between). So, it was just me and Amelia all day. :) It was a long day and I knew it would be. She is not on any kind of schedule yet. Her short little life has had many twists and turns already, I'd be confused too! I knew it would be interesting. So, it was a trial and error day for us, my first day to really try to figure her out. (Not that I'll ever be able to do that). She was pretty fussy to say the least. I tried it all...diaper changes (more than I can count), feedings, swing, swaddling, stretch-out and play time, music, dancing, laying her in the bassinet, white noise, gas drops...she was not content and fought sleep all day. By evening, she seemed, well, "over-tired" as they say.
Finally, when evening came, I pulled out the the Baby Bjorn baby carrier (we hadn't used this nifty tool yet) and ventured outside for a short walk. Mind you the temperatures here in Nashville have been record high so we don't get outside much yet. So, out we went strolling down Beechwood Ave, me unshowered and barefoot, and her, wide-eyed and sporting a onesie, also barefoot. The air was warm, but there was a slight breeze. I can't even describe the look on her face. With furrowed brow and her little mouth agape, she stared up into the trees and sky almost in amazement. I wish I had taken her picture but I'm pretty sure I'll never forget the look on her little face. I know she can't see very far yet, but she definitely knew something was different. She was being introduced to a whole new BIG world. The best part about it...she liked it! Just then the stress of the past few weeks melted away, for a while at least, and an overwhelming feeling came over me...I realized, as her parents, that we get the privilege of introducing this beautiful little being to all things new and exciting and wonderful...to the big world, the big life. And we get to see the look on her face through it all.
She fell asleep, peaceful and content, warm breeze on her face.
She is truly a gift.
Thank you for praying for her.
love
Kim

Just hanging out...

Hello All!
Just thought we'd post a quick blog for all of those who have been checking each day. Only a few things to report about Amelia. We did take her to meet the dermatologist. He was pleasantly surprised when he saw her, he said she looked great and not what he expected. By looking at her he was able to rule out the very severe. He took a look at her dry skin on her back and neck and said it could be indicative of what her skin may do later but honestly it is hard to say anything about what will happen considering she is still in the sloughing process. That is why they don't examine Colloidian babies or do a biopsy until 2 or 3 months of age because it takes that long sometimes for the Colloidian membrane to come off. A biopsy now would just be confusing, therefore it's still too early to tell. Overall, he was encouraged he said she could be one of those babies who beats the odds and has totally normal skin after the membrane is gone. Amen. That's what we are praying for each and everyday, and that's why we pray for her total healing!
Her electrolyte levels were normal so he said we could skip the heel stick this week. Thank goodness. One less thing. Oh, and we had her weighed on Friday to be sure she is steadily gaining. Well...she is. She's up to 11 lbs. (Just look at her cheeks!!) I couldn't believe it! No problems there.
My parents headed North on Friday after helping us during the first 4 weeks of Amelia's life. It was so nice having them here we appreciated everything they did for us. Ford and I are now settling into life as parents. She is acting like any other newborn and it's so fun. She even has a nasty diaper rash (not fun), enjoys frequent feedings (why is it the feedings last longer in the middle of the night?), we change lots and lots of dirty diapers, and she loves to snuggle, oh and she loves her bath now! Today, Ford took us out for a drive and let me off at the new Anthropologie store (my favorite) down the street that just opened. While I browsed, he and Amelia drove around, she likes the car. It felt good to get out of the house! It's hard to believe it's been almost 4 weeks since she was born. As for me, I am feeling much better since the surgery. They say recovery takes a total of 6 weeks but I feel pretty good already, a real blessing.

I've heard that so many people check Amelia's blog daily, even several times a day. Wow, I love that. Thank you so much for caring about her. There are still many unknowns and it's easy to get fearful and even angry, but we are trying to remain positive and prayerful and of course we remind ourselves to take one day at a time. We are very blessed to have such a beautiful little girl.
So, since you are all praying for her, I am asking that you specifically pray for the dry spots still left on her body to slough away, revealing beautiful normal skin. And of course, for God to restore her from the top of her head to the tips of her toes...complete healing.
Thank you all and we love you.
Kim, Ford and Amelia