I'm breathing room air!!!!!!

>> Friday, July 17, 2009

What a day - over the past 31 days I have questioned a number of times if we would get to this point. I can't begin to explain the feelings around seeing your child breathing without assistance and no tubes in her mouth. I never thought I would enjoy a baby crying until you can't hear it for 31 days and then there is a voice!

It is hard to truly grasp how much Kamryn has endured in her first month of life, but I reflected on that a lot today as I just watched her look so much more comfortable without the tubes. I saw another baby come back from surgery today and it reminded me of where we were 28 days ago and all the ups and downs we have faced since then. We couldn't be more proud of my little girl who has taught our family so much in her first 31 days of life.

It was actually weird walking in to see her today because I immediately looked at the laptop on top of the ventilator out of habit. That screen has become such a part of my daily routine and to see it completely blank was weird and a bit shocking. It took me a while to stop looking at it. I have bragged about our four primary nurses almost on a daily basis because they truly are unbelievable and today is no different. One of our primary nurses, Monica, took care of Kamryn last night and spent her time getting Kamryn ready for the big day. Her shift was supposed to be over at 7:00, but she couldn't leave until she saw Kamryn off the vent and made sure she was ok, so she stayed on until 11:00 this morning. Just amazing. The four nurses have been our advocates everyday and they treat Kamryn like she was their own. I walked in this afternoon to see two more notes from Kamryn that Monica put together. This has to be one of the best!


Hollie was able to go see Kamryn today in the NICU and she loved it as you can see in the pictures below. Hollie and Stef read poems to Kamryn and each time Hollie would read, Kamryn would get a huge smile on her face. It was pretty neat to watch.

So, Kamryn did fine all day with just room air. Her x-ray looked incredible with a large amount of left lung. To me, it looks like her left lung is almost as big as her right lung. I wish I had a timeline for when she will come home, but we don't. We need to make sure she can keep up her respiration and not tire out. We also need to wean her from the remaining meds and she will likely have withdrawals if they go too fast so that will take some time. Finally, we need to get her to eat on her own. Overcoming these three challenges could take days or weeks, but my gut tells me it won't be more than 2 more weeks.

So here is the superstar without her vent!



And her sister Brooke!


Have a great weekend everyone!
Shawn

15 comments:

Allison July 17, 2009 at 10:06 PM  

I'm seriously praying Stephanie gets a BIG birthday present-all 3 girls home celebrating with her!

Allison July 17, 2009 at 10:06 PM  

Oh, and what beautiful girls you have-all three!

Anonymous July 17, 2009 at 11:37 PM  

Our darling Kamryn - We am so happy for you to finally be free of those pesky old tubes. You are truly amazing, and your Daddy is right - we have all learned some very important lessons in your 31 days with us.

All of your family is so very proud of you - you have worked so hard to get to this day.

It was also amazing to realize we had not ever seen you without your tubes. You are so beautiful - just like your Mommy and your sisters.

Keep up the good work sweet girl. We are all looking forward to having you home so your whole family can finally be together.

Have a wonderful night's rest and remember how much we all love you and how blessed we are that you and your sister joined our family. We are looking forward to fun times together.

All our love,
Mimi and Papa

Jackifer July 18, 2009 at 1:24 AM  

I have never been so excited to see baby pictures! She is just so gorgeous! I am so thrilled. Can't wait to see her in person.

Keep up the great work, Kamryn! You are a true trooper!

Anonymous July 18, 2009 at 6:51 AM  

Shawn And Stef

She is beautiful, wow how different she looks and acts without the tubes.
Keep it up Baby K or maybe call her SUPER K.

Jake

Jonathan and Sarah July 18, 2009 at 8:29 AM  

That is sooo exciting! She looks great! :)

Tracy Meats July 18, 2009 at 9:24 AM  

Kamryn is looking good!! That is awesome, she is not even needing O2!! Way to go little girl. Both girls are so beautiful and I love their little smiles. Many prayers Kamryn keeps doing so well and stays strong. So happy that Hollie had a great day with her little sister.

Much love,
Tracy

Anonymous July 18, 2009 at 10:05 AM  

These are the best baby pictures EVER!! Wonderful news! A real miracle! Congratulations! Kamryn is always in our prayers,
Maggie an Jim

The Griffin Family July 18, 2009 at 10:21 AM  

Hey guys!
My name's Claire, I've not commented to you guys yet...my husband may have though? I just wanted to say I crrried my eyes out looking at your latest post about your Kamryn. She is smiling!! I am being induced on August 10th, and my son has CDH. Your blog is suuuuch an encouragement to my husband and I, and we are really happy for your success. Congrats!! We talk about Kamryn every day, and are so happy for your family. :)

Susie July 18, 2009 at 11:32 AM  

Your girls are beautiful and it is so exciting you hear your good news. We are continuing to pray for Kamryn and her great progress. Thanks again for all the information and this blog -- it has been SO helpful and encouraging! God bless!

Anonymous July 18, 2009 at 3:11 PM  

So happy and excited for your family! Kamryn is such a little miracle, and just as beautiful as her sisters! I got tears seeing the one of her smiling. So very precious!! It's amazing how these sweet babies can endure so much, and still come out with a prize winning smile. You could just eat them up. Here's praying that Kamryn continues to improve, eat and get stronger every day, so you can soon have all of your girls home together. God Bless you all, and enjoy your weekend with your beautiful family! Hugs to the girls! I am just so thrilled for you and Stephanie.

A Mom-Mom from NJ
Dale

Anonymous July 18, 2009 at 5:44 PM  

Kamryn looks so HAPPY! What a STRONG little girl! We could all learn a lesson in courage from Miss Kamryn. Love you all and so incredibly happy, Courtney

Sallie Mercer July 19, 2009 at 12:36 PM  

Praise God, from whom all blessings flow! I couldn't be more thrilled for ALL of you, but especially precious Kamryn. Hooray!

Love,
Sallie

Elizabeth July 19, 2009 at 2:05 PM  

I love it! These babies teach us patience - and children always will!

With thoughts and prayers,
Elizabeth

Candice and Rob Beal July 20, 2009 at 11:45 AM  

yay! i just got the post to come up after sooooo many days! anyways those pics are just precious. I think Kam and Hollie really look alike! Brooke has some cheeks on her.....i'm so happy for you guys

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