Brynn...5 weeks post-transplant!!

Wow!  What a month it has been!  We have been very busy with clinic visits, therapy sessions, medications, feedings, diaper changes and bath time, but through it all we have enjoyed every minute of it because we are together!

Brynn is doing amazingly well!  At each clinic visit, she passes each test with flying colors.  The transplant team is so pleased with her.  In her first week out of the hospital she learned to do so many things.  She learned to shake her head "no".  Hmmm...wonder where she learned that?  Heaven knows no one we've ever encountered has ever dared to tell Miss Brynn "no"!  I guess it's just part of her diva DNA...if she doesn't like it, she ain't gonna do it!  She laughs out loud now...full on belly laugh!  The first time I made her laugh after her transplant was so cute, but just as soon as she laughed it turned into a whimper because bless her heart (literally) her little chest was still tender.  If I say something funny like "booty butt" or make her stuffed animals dance and sing for her she gets so tickled.  She is the happiest baby because the only time she cries is when she is sleepy.  I know the ICU nurses will appreciate this one...she also starts to fuss when she discovers no one is looking at her, and as soon as I come into view and talk to her she instantly starts smiling.  Rotten!!

She rolls from her back to both sides, and is trying so hard to roll to her tummy, but that arm just gets in the way!  We got the OK to put her on her tummy last week.  She puts up with it for about two minutes and then she starts with the diva-esque tantrum.  Brynn is working very hard at taking her bottle.  We have a way to go before we can tell the feeding tube buh-bye, but "slow and steady wins the race".  Amen!  I have, MYSELF, replaced her feeding tube 5 times since she has left the hospital.  Each placement has been perfect I might add! :) 

Since Brynn has left the hospital, she has been shopping...a lot...let's see, Northpark, Galleria, grocery store, Allen outlet mall, Pottery Barn Baby, Babies-R-Us and several trips to Walgreen's or CVS.  Don't be alarmed at the thought of her being out-and-about so much because Brynn wouldn't be caught without her mask on! 

She enjoys bath time nowadays.  If I accidentally get a little soap in her eyes, there is no meltdown on her part, and no valium or ativan is necessary to diffuse the situation.  Oh, no...Brynn is not on the hard stuff anymore! 

Brynn loves her big brother Brady, and she loves for him to hold her.  He is such a BIG help to me.  When I need to wash my hands or grab something in another room, he stays right with her until I come back.  The other day he yelled that her feeding tube was coming out.  I quickly pushed it back in, and Brady said, "Now, what do I get for saving her life?". 

This is another one that the ICU nurses will remember.  Brynn still loves to look at herself in the mirror.  Um hmm...a full length mirror now.  I'll hold her and stand in front of the mirror so she can look at herself, and as I turn to walk away she turns her head to get one last look! 

I'm sorry the update has been so long in the making, but our schedule is non-stop.  Please keep checking back on Brynn's blog because I will try to do better with updates! 

Love to you all,

Scott, Amy, Brady & Brynn

Brynn has THE PERFECT HEART at long last!

Dear Friends,

I have so much good news to share!  I will try my best to let you know of all the miracles that Brynn has experienced since Mother's Day.  I must wait until tonight when we go back to the Ronald McDonald House where the internet service is more reliable.  Everything is going beautifully and according to God's perfect plan! 

Praise the Lord!

Love to you all,

Amy & Brynn

Oh, Happy Day!

I can't write too much tonight because the internet service here is no good!  I'll try to bring everyone up to speed this weekend, so be sure and check back in.  Brynn is back!  She opened her eyes tonight, and we played and played!  She smiled at me and Elmo!  She played pat-pat too.  I started crying.  I missed my little girl so much!  I can't wait to hold her soon.  Thank you all for your prayers, God is good!!

Love to you all!

Hello Everyone!

I am finally getting a chance to update Brynn's blog!  She is doing fine, but she had a rough night and morning.  Feeding tubes are the pits!  She has had it removed and replaced twice since last night, along with an x-ray following each placement to make sure the tube is in the right place.  Finally, at 4:00 this afternoon we got it right.  Let the feedings resume!  Brynn also had a routine ECHO today, but I haven't heard the results yet.  She got a lot of the "good stuff" this morning, therefore, she is sleeping, therefore, I have the time to let all of you know how she is doing.  :) 

She is a happy little girl.  Very happy.  Her hair is getting longer and darker.  She loves attention, and she gets quite a lot of that!  She has the prettiest smile.  She loves balloons and "Penny" her ladybug mobile.  She loves Minnie Mouse and Elmo.  She loves me to read Elmo's Guessing Game About Colors to her.  She also loves what we like to call "Spa Day".  It's a glorified regime of bathing, hair washing, moisturizing, hair brushing and putting on a new outfit.  It also includes changing her bed linens.  Do you believe that we coordinate her blanket with what she is wearing?! 

We have been waiting 93 days for a heart.  I pray so much that today will be "The Day".  When she goes into surgery for her transplant, I would love for everyone to wear their "Hearts for Brynn" shirt.  I think about that day all of the time...

Love to you all,

Brynn & Amy

Happy Easter!!

It's been so long since I've posted!  Believe it or not, it really is busy for us in the hospital.  Brynn is doing amazingly well, thanks to the Good Lord.  She enjoys swinging in her swing, bath time is well tolerated now and she is more at ease overall.  She got to go for a ride in her buggy around the unit last Thursday!  She LOVED it!  She was so patient with us because it takes a long time to get her in the buggy with her entourage (her lines), oxygen tank and her portable monitor.  Today is a HUGE milestone for Brynn...she is going to go outside for the FIRST time in her life!!!  I'm so happy!  Her nurse practitioner and another nurse will accompany us on our excursion.  There are conditions though,  Brynn must wear sunscreen, sunglasses, a big floppy hat and a cool outfit...check, check, check and check.  We plan on enjoying the flowers and the trees, hearing the birds sing and feeling the warm sunlight on our face.  My, my what we all take for granted...the little things.  How I've learned my lesson, never take anything for granted. 

I will post pictures soon.  I almost forgot to mention that due to the fact that Brynn has been gaining weight at such a phenomenal rate, her doctors may decide today to decrease her calories!  Way to go Brynn!  God has been so good to Brynn...he allows her to breathe on her own, to giggle, to smile, to ride in her buggy, to play dress up with Mommy and to do most all of the things a healthy baby would do...thank YOU SWEET JESUS. 

Thank you all for your prayers and all of the things you do for us.  It is so overwhelming to us to see how much you all care for and love our little Brynn. 

Love to you all,

Brynn & Amy

Today has been a busy day for our little Brynn.  It's never been the typical day a 4 month old would have.  Brynn had two ECHOs today.  An ECHO is an ultrasound of the heart.  While it's not invasive, it's not fun to have a sensor moving over your little chest for 30-45 minutes.  Brynn really hates it towards the end when she has to tilt her head back while a sensor is passed over her chest near her throat to get a good image of her aortic arch.  The doctors were worried that Brynn had developed another obstruction in her arch.  Thanks to the Lord, she hasn't.  I'm still awaiting the results of the first ECHO to see if her heart function has changed.  Hopefully, it has gotten a little better or stayed the same. 

Last night, Brynn showed the doctors that she didn't need that pesky nasal cannula.  Well, that was short lived because during rounds this morning the doctor ordered the cannula to be replaced.  Even though I was so happy to have one little chubby cheek free to kiss and gently pinch for a while, I will admit that her heart rate has gone down since getting the extra support from the oxygen.  It just goes to show you that the simple task of breathing takes its toll on Brynn. 

We also learned today that Brynn will have to weigh 8 kilograms before she can be considered for the Glenn surgery.  That means that she will need to gain about three more pounds.  There is also other criteria that she will have to meet in order to have this operation, so the surgery may or may not ever happen.  I just put my trust in God that He will reveal to the doctors what should be done.  I think He already has because the doctors just yesterday agreed that she could have the surgery when she was 6.5 kilograms.  She was 6.6 kilograms as of this weekend.  I think God is stalling the doctors because He has other plans. 

God is good...yes, he is!  We have received several offers from people wanting to organize fundraisers in honor of Brynn.  Unbelieveable, but that is God working through people. 

I'm not finished with what I want to tell you, but I need to go.  Brynn is wide awake and we need to play!  She hit another BIG milestone today...she rolled from her back to her left side! 

Good night and God Bless!

Be sure and watch KLTV Channel 7 tonight at 10 to watch our interview!  It will also air tomorrow morning and tomorrow afternoon at 5:00.  If you miss those broadcasts, go to http://www.kltv.com/ to watch the interview.  We were also on 100.7 FM this morning.  I'm not for sure if the radio station is streaming the interview on their web page or not.  Big brother Brady was present at both interviews, and hopefully he will get some good airtime!