Tuesday, August 3, 2010


I can't believe it's already the end of Day two here at CHOP. The past two days have really been such a whirlwind, and each night I feel physically and emotionally exhausted. I didn't expect to feel this way. I knew we'd be busy with tests and meetings, but I wasn't prepared for how taxing it would be to just watch Madison go through these things again.

Yesterday was long, but she did great. We were at the hospital for 8 hours with no nap, and she still remained happy and in great spirits. Today...not so much. The MRI was this morning...and while she did ok with the fasting part of it, she really lost it with the x-rays and IV. By the time they started to sedate her, the goofy juice was useless, and she was sobbing hysterically. It was excruciating to see her like that, looking up at me to save her, and feeling helpless because I couldn't. And just when I thought it couldn't get any worse, the sedative started to take over, and it did. Watching her go from hysterics to unconscious was harder than I ever thought it would be. They wheeled her away, and I had flashbacks of the shunt experience. It was just an MRI, and I knew she was fine, but it didn't change how difficult it felt to see her go through all of it. She's been in and out of it all day. Sleeping, crying, and just plain irritated. Now she's finally down for the night, and I'm hoping she wakes up happy and back to normal tomorrow.

In the morning we will have the physical evaluation, then the renal/bladder ultrasound and VUDS in the afternoon. Another very full day, and then we head back home on Thursday. We should get plenty of feedback from the urology testing, and I am praying that it is all good news.

Though the past two days have been all business, we were able to get some fun in on Sunday with another family here for the study. Kelly underwent prenatal surgery a few weeks ago, and has been on strict bedrest since then...so we were so excited to visit her and let Madison and her little guy, Zander, have some playtime together. We had such a great time! The kids really seemed to hit it off...even sneaking a few kisses in! It was adorable, and so much fun. I enjoyed our visit so much, and I felt like we'd known each other for ages...Kelly, you have a beautiful family, and we loved hanging out with you guys! Our prayers are with you for a happy and healthy pregnancy and delivery, and I definitely look forward to keeping in touch!

How adorable is he?!

I think Maddie knew she was about to get kissed....Look at that smile!

She didn't want to miss a thing...so she kept her eyes open the whole time!

She was pretty psyched about it...and he looks proud of himself!

Yesterday, I had the pleasure of meeting another couple who is here for the study evaluation. They had heard we were here for a follow-up, and they asked if they could meet us and Madison. Oh, they reminded me so much of us at that point...scared, confused, and completely overwhelmed. I looked into her eyes, and I knew exactly what she was going through...so completely broken and torn over a little one back home and a little one on the way. Their eyes lit up when they saw Maddie. She was all smiles and giggles, clapping and waving at them. She and I both cried as we talked about our hopes and dreams for our little girls, and I assured her that I haven't given up any of my hopes and dreams for Maddie...but the fears that consumed me during the pregnancy don't keep me awake at night anymore. Once Madison was in my arms, I knew that everything would work out fine...maybe not the way I had planned, but it would still be ok, and her life will be every bit as amazing as it is in my dreams. I hope we were able to give them some peace and encouragement...They randomize tomorrow, and they are in my thoughts and prayers tonight.


  1. Aw, Maddie is just a doll! What a trooper she is to get through all of this with a smile on her face! I think all these connections that are being made-the two you made today-and all the others from the SB conference to the parents meeting up on their own, are just AMAZING. I know what a meeting like you had today would have done for me when I was in that situation. I can only imagine what comfort you and Maddie were able to give that couple today. What a blessing these friendships have been and continue to be! Praying for you and Maddie during her final tests, safe travels home and great news all around!

  2. After reading this last part I have goosebumps. What a blessing it was for both of the families that you met to see Maddie, smiling and happy. Stephanie is so right, I'm sure that family feels so much more peace now after meeting the three of you. Good luck with the rest of the testing...I can't wait to hear all of the GOOD news! :) Love and prayers...

  3. Wow, what a difference you and Maddie have made to those families!

    I just wanted to tell you that I felt the same way at our MOMS evaluations. It's hard being back in that setting, and the testing really is hard. I also had a really hard time with the MRI sedation, so that brought back a lot of memories.

  4. So hard to watch your little one upset and not be able to fix it. I find that part the hardest of all, the placing of IV's, the getting of blood, the holding them still, knowing they don't understand. I hope she bounced right back! She is gorgeous - love that smile, and her fabulous bows!

  5. How wonderful to have such good results and to meet those who are on this journey with us. :) It know how surreal and special that is having just met some of those friends this summer - what a blessing - and she looks like she's doing amazing by the way! Such a cutie! And that kiss picture - priceless. :)

  6. Selina-please know that meeting you guys made a HUGE difference and impact on us...you, Chris and Maddie let us know what the light is at the end of the tunnel!


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