Stem Cells Round 2

 Meagan's second stem cell infusion at Duke University took place last week.  Luckily for us, we have great parents and inlaws ... my mom and dad came down to keep the older kids in school and their routines....and Brian's mom flew in to take over the second half of the week.  We left the Sunday before her infusion and got to Duke Sunday evening. 

We had the pleasure of meeting up with Brian's sister, her husband, and their 2 daughters before we went to our hotel. They live relatively close to Duke, and Katie (Brian's sister) and I are very close so I was really looking forward to the visit.  Mike (her husband) is leaving soon for Afghanistan, so there was the added bonus of seeing him and wishing him luck/spending time with him before the deployment.  We had dinner together and I also got to meet their second daughter (2 months old) for the first time.  She was such a cutie.  I had to laugh at myself because I automatically reached for her with the "Hydro hold" but of course I soon realized Claire was much stronger than I thought.  Although I've had my 4 older girls, I'm so used to Meagan now, I "forgot" how strong a typical 2 month old is. Claire was such a sweetheart.. I was so glad I got to meet my newest neice!

Meagan (5 1/2 mos)  meets her newest cousin, Claire (2 mos) 

Meagan getting a snuggle from her Godfather, Uncle Mike, before he deploys.

After lots of laughs and a great time together,  we said goodbye to Katie and Mike and the girls and headed for our hotel.  We were excited for the next day - Katie and Mike surprised us by having an old friend of mine, who is a photographer, plan to come the next day to take Meagan's first professional pictures! We couldn't wait!

Monday morning came - we were excited for Meagan's pictures and spending a few more hours with Mike, Katie and the girls....but I got a phone call that morning... Katie was sick and had been all morning :(  I felt awful she was so sick!! The photographer was still coming, but, we were not going to hang out that day with Brian's sister and family because of them being ill.  It was disappointing but I was really hoping they felt better soon.  Being sick is NO fun at all!!  We said our goodbyes and waited for the photographer.

Now the story behind the photographer's connection with me is pretty neat.  I grew up with a military dad - we lived all over the place... all over the world.  On one of our tours in Germany, I met a girl named Tiffany Kay.  She lived on the other side of the base from me, so we'd often trade bike rides going across to each other's apartments, meeting at the playground, or we would see each other at school.  Time came to move again and we moved back to the States, as did she.  For the most part, we lost touch. 

Fast forward 22 years.... there is an amazing thing called Facebook.  We randomly reconnected through Facebook and began to keep in touch again.  This is when I found out she did photography, and in the past, since she lives near Brian's sister and her family, Tiffany had traveled to their place a few times to do photos.  So now she was coming up to Durham to do photos for us.  Such a strange feeling seeing an old childhood friend after 22 years... and then watch her photograph your child!! It was such a neat turn of events.

We took a few photos in the hotel room on a blanket because although it was a beautiful day, it was a bit cool and the breeze was definitely cool as well.  We did want a few outside shots, though, so we went up to the Duke Gardens on the campus.  We walked around a little bit and took photos.  The pictures Tiffany got were amazing. 

Meagan had been "off" that whole day.  The previous day, she had been smiley and very happy.  This particular day, she was just "gloomy."  Any Hydro mom knows "those days"... when your child is just not themselves and is almost not "with it"....  so the fact that Tiffany was till able to pull out amazing photos of Meagan is proof of her talents.  She was able to get so many great pictures - and really capture "Meagan" through Meagan's eyes and expressions.  Even on an "off" day, Tiffany was able to really tell Meagan's story.  I have posted a few of Meagan's pictures below - if you live in the Southeast (NC, SC, FL, GA, etc.) please contact Tiffany Kay Photography (https://www.facebook.com/messages/1601700739#!/tkayphoto ) and give her some love! She did an amazing job and will for you too.

After Meagan's photo shoot, Brian and I got some dinner and then went back to the hotel to get some rest.  It was going to be an early morning getting ready to go to Duke Children's for the day.

The next morning we got up pretty early.  Meagan had of course fussed all night.  I fed her, bathed her, and dressed her.  I put her in her cute red Minnie Mouse pjs... I thought it would be good luck.  We got our stuff together for the day (phones, computers, etc.... ) and left.  (Yes, it is a long day with a lot of waiting so we needed some mommy and daddy entertainment!)

We arrived at Duke Children's... we went up to the 4th floor and checked in.  We were taken back very quickly and Meagan got all her stats done.  Then we went into her room in the day hospital and waited for the nurses to come and start her IV.  The nurses came -- Meagan was in a SUPER good mood that day.  She was smiling and cooing like crazy! Matter of fact, several nurses came from down the hall just to see that baby who was making "all that noise." 

Meagan cooing and having a grand old time



Meagan didn't stay happy for long -- after 4 failed attempts at an IV, she was very upset!! I would be too! Meagan is just a really hard stick. she has teeny tiny squiggly veins.. ones that look good blow too easily. and ones that look bad are hard to get. The nurses finally said they were going to call in the PICU team to get Meagan's IV in so she wasn't more traumatized than she had to be.  The PICU nurse came in and got it on the first try! Yippee.  So then we waited for the doctor.

Meagan fell asleep after 4 IV attempts....Trey (music therapist) soothed her to sleep with some great guitar music.





Dr. Sun came in - she works with Dr. K on the cord blood infusions and so she handled Meagan's that day.  Trey the music therapist came in and all the nurses.  Dr. Sun got the infusion going.  It's amazing watching the blood travel from the bag...through the catheter and into Meagan's body.  Normally such a thing wouldn't even phase me, but knowing those stem cells were in there was just such a cool thing.  I wondered where they would go once in her body - how they would help her...if they would help her....what kind of miracles were possible with these undamaged cells...  It is just such an awe inspiring experience.



After about 10 minutes, the infusion was finished.  Meagan then got hooked up to IV fluids for a few hours to make sure she was well hydrated before she was discharged from the hospital.  Once she was finished with the fluids, we got the "ok" to leave.  We got our things and headed out.  We got some dinner and headed back to the hotel to get some rest before our long drive home.

All tuckered out from her big day



The infusion was a great experience, yet again.   Trey singing gently to Meagan..... the nurses talking softly... Meagan staring intently at every step in the process as if she was taking it all in... and Dr. Sun explaining step by step as the infusion happened... the whole environment is like something I've never been in before at a hospital.  It is a strange sense of being when the infusion is happening - it's like feeling love, hope, worry and comfort all at the same time.  I think it's because after going through so much negativity with specialists before Meagan was born, we were finally standing at a place where the doctors' sole purpose was to help babies like Meagan - to offer parents hope and view Meagan's potential as something important.

We report back in 2 months to let Dr. K and Dr. Sun know how Meagan is doing and if she is doing anything new.  If she is doing really well or we notice Meagan doing a bunch of new things, they said they may have us come back earlier than her 1st birthday for her 3rd infusion.  If things stay stable we will probably make plans to go back around Meagan's 1st birthday instead. 

So far, Meagan is still doing well.  We haven't noticed anything 'new' yet, or any changes from what she was previously doing.... but we know those cells are working wonders - even if it's in ways we cannot see outwardly. There may be miracles happening in Meagan that are not made obvious to us....but that's what hope is all about. And even if I can't see it, I"ll err on the side of hope every time.

Face of hope