Share Babyortyl

Thursday, November 17, 2011

More (belated) AMAZING news!

Hello friends!

There is so very much to share with everyone. I have been busting at the seams because it is all such good news, such increadable news, news that I am so THANKFUL to share!

First, I have to tell you about our fund raising weekend that was already a week and a half ago! The Mighty Oakes Heart Foundation, Planting a Seed golf and dinner auction took place on Friday & Saturday night and the weekend was a HUGE success! Beyond raising more money than I could have imagined, Greg and I both were so amazed by the turn out. It was likely the best night of our lives. We had nearly 180 friends in attendance and it seemed as though everyone was moved and inspired and excited to support the foundation. Before hand I helped Ellen Moriarty, the weekends wiz organizer, and hardest working member of the board of directors for the foundation, with the seating chart and felt pretty comfortable going into the weekend. I knew just about everyone on the list, or I at least recognized names or felt comfortable seeing that some friends were bring their families or other freinds. I was completely at ease with the layout on paper, I didn't feel nervous going into the weekend, but both nights, especially Saturday night at the auction, I was a bit overwhelmed with the reality of everything. The ballroom where the auction took place was packed, and you could hear nothing but happy voices, laughter and lively music. Everyone was so dressed up, the room was beautifully decorated with little acorns everywhere, there were literally auction items from wall to wall to wall, and two huge projection screens showing images of the live auction items as well as a slide show of 300+ pictures of our Oakes since birth. That is a quick visual. But I have to try to describe the energy in the room. Everyone was happy to be there, excited to spend some money, and ready to get involved. I didn't see Greg all night. We were both walking around confessing our love for our guests and hugging everyone that we could. We were consumed thanking everyone for coming, thanking them for their donations and contributions. There were lots of faces that we hadn't seen in some time, lots of familiar faces as well as new faces, and friends and family that traveled from both ends of this country to be with us. Overall we were just so touched and humbled. We have been feeling loved ever since Oakes was born, and we decided to share his and our story, but we felt SO very loved on Saturday night. And, we have been walking on clouds ever since.

To everyone that attended, volentreerd, organized, donated, participated from afar by sending contributions, supportive email, prayers and well wishes...THANK YOU!! We have learned so much since Oakes was born, and one thing that is crystal clear is that we are loved. We have amazing family and friends and we are beyond blessed!

So, let me tell you about Oakes (prepare to be thrilled, and to be fair you may need tissue for happy tears!) Oakes is doing AMAZINGLY WELL!! On November 16th Oakes was transitioned to a HOME VENT!! I got to his room in the morning and he was comfortably sleeping in his swing, connected to a tiny little vent. This is a HUGE milesone for Oakes! In addition to the fancy new vent we have been piling on the normal baby stuff like you wouldn't believe. For starters last week Oakes had all of his two month immunizations. He was way behind on his immunizations, then after his transplant we wiped out his immune system so we are kind of starting from scratch. Last week, Oakes got rid of his NIRS stickers. Since transplant he has had that big sticker on his foreheard, that I have used as a billboard. He had another identical sticker on his lower back and both were there to read his Oxygen levels in his brain and kidneys, to make sure that he was moving blood evenly. And no stickers mean that no one is concerend about him moving blood! I kinda miss my billboard, but I love that clean shiny and BIG forehead even more! Not to mention, I LOVE that his heart is working well enough to move blood where is is supposed to. Talk about normal baby stuff...hallelujah, no more NIRS!! Do you remember the lines that were placed right next to Oakes kidneys, the ones that were going to be used to give him dialysis? So they never started dialysis, they were there just in case, but when Oakes was retaining fluids and his belly was becoming distended, they would use these lines to drain the belly. So that line has been clamped! It sorta dried up! Ba-bye stinky belly fluid! Remember we were praying that his heart would improve and everything would be effected by better blood flow - his lungs, his kidneys, his thyroid, well that best case scenario is happening and all of these little issues that Oakes has had are clearing up!! More normal stuff: Oakes now has 8 teeth. Four on top, and four on bottom. His feeds have been increased again, and so has his calorie intake. He is plumping up, and he is looking really long to me. The nurses have shuffeled everything around in his schedule so that Oakes can be on more of a day and night schedule. Lights are on during the day, all of his therapy happens during the day, then at night he is only disturbed for minor issues in an attempt to get him on OUR HOME schedule! Oakes has a new daily routine with his Physical therapist. She is sitting him up, she has been putting him on his tummy, and in his swing. She is doing lots of "normal" baby things, to help him gain strenght and well, just be a normal baby. There is a big sign by the nurses station saying "Since I am a big boy now I like to do lots of big boy things. Please help me include these in my day: swing, bouncy seat, boppy, bumbo chair, activity mat, music, movies, reading books, and my favorite: Being help by Mom!" I remember months ago walking into Oakes' room and feeling so excited to see that one of the nurses put Oakes in a little onsie, but to come in and see him sitting up or hanging out in his swing is just....beyond words amazing. This will probably sound very foreign to most of you, and for good reason, but throughout these last 8 months or so Greg and I have had to adjust our dreams for Oakes. We have always hung onto every hope possible, but while trying to balance hope and reality we naturally rearranged our dreams for our son. To be completely honest I never even imagined that we would have him in a swing one day. I have been imagining things like healing lungs, breathing lungs, test results and numbers, Oxygen saturation levels, and Compliment #5 going away. My long term dreams that I have had for Oakes was simply that he would live. One step beyond that was to just get him home, and have him play with Isla like normal & healthy siblings would. But these little, normal baby things that have been happening on a daily basis have completely thrown me. In the last couple of weeks I have been brought to tears more than once, just realizing that I need to dream bigger for Oakes now. I need to dream off the charts, unbelievable dreams for this kid, cause we all know he has something special in him, and he already doing off the charts, unbelievable stuff! I told you....AMAZING news, right?!

So, we are still getting smiling visitors at our door day after day. Just today a 7West nurse came to peek in Oakes' room and was saying that they are so excited that Oakes will be making his way down there soon. Last week, Dr. Michelson stopped by to say Hi. Do you remember me sharing about Oakes DSA tests weeks and weeks ago? This was looking at his Donor Specific Antibodies. It had to do with rejection. We used to nervously wait for them week after week. And for the longest time they went up then the next week they were down a little. Eventually the results were consistently trending down. Now, they are gone. Oakes has zero antibodies. Completely abnormal for most of us, but for his new lungs this is ideal. Zero antibodies is like the biggest welcoming party that those gorgeous lungs of Oakes could possibly have! I hadn't seen Dr. M in weeks and weeks and after sharing the news about no antibodies Dr. M told me that he will be coming on service in two week, and he will be on service for a span of two weeks and he is hoping that he will be able to escort us down to 7West while he is on! AMEN, DR. M!!! We are maybe 100 feet from the doors of 7West, but boy, will that be an amazing walk. In fact, we may have to parade down there!!

In order to get to 7West, we need to be on the home vent, and off of sedation meds and on lower doses of his other medications. So last week we hit a small road bump. Oakes sedation medication was slowly being weaned and over the weekend he started showing pretty classic signs of withdrawl. He was clearly miserable, which was aweful to whitness. Babies are not supposed to go through withdrawl, Uuuug! Oakes was so mad and miserable that he was bearing down and holding his breath, which was not good at all. We only want Oakes to be a heathly shade of pink, and he wasn't. He was taken off of his home vent, and put back on the big vent. His meds were turned back up and at one point when he was holding his breath he was given paralytic, to chill the heck out. So, kind of a step backwards, but once he was given the drugs that he liked and was missing he calmed down and his numbers have been looking beautiful, which means he is fine, and this truly was just a wean issue. So tomorrow we start the wean again, but this time the wean will happen much slower. There is still a chance Oakes could be home for Christmas, but that would be aggressive. Maybe he wants to start the new year with a bang and come home in early 2012, which is fine by us!

LOVE, love, love to all of our friends.
Thank you for everything that you do for us!
We have SO MUCH to be THANKFUL for this year.
XOXO, Becky


  1. Just reading this ... tears of joy streaming down my face!!! So completely amazing.

  2. Wow!!!!! Wow!!!!! Amazing news! So happy for your family. What a little fighter!!! Keep it up, Oakes!

  3. Happiest of happy happiness!!!! What a Thanks giving this is going to be. I'm so overwhelmed reading this and so grateful for Oakes' continued progress and normal baby stuff. Yaaaay! Xoxo

  4. Wow, amazing update on Oakes! I will be thinking and praying for him and you all this Thanksgiving weekend!

  5. Wonderful news!!!!!! So much to be thankful for this Thanksgiving!!!! Praying for more updates just like this.
    Jennie and Emily

  6. Thank you, Oakes, for totally making my Thanksgiving!!! Thank you God for answered prayer! Congratulations to your whole family.

    ~Julie Nunn

  7. Tears of joy. Just amazing, incredible news. So, SO happy for you all, and one more thing on my list of things to be thankful for this Thanksgiving. May you continue to feel the love that is being sent from every direction as things continue to look up and progress. Humming that special Christmas song...
    MI love,

  8. What wonderful news about Oakes!!! Enjoy your extra special Thanksgiving this year!!! Sending continued positive healing thoughts and prayers!!!


  9. Awesome news and what a blessing! Our 4 year old asked if Oakes pumped his legs when he was in the swing =)... Prayers of joy, thanksgiving and continued healing for Oakes and you all!

  10. Happy tears indeed! Love you guys. xoxoxo

  11. Amazing news! We know you can do it Oakes! Lots of love and strength for the coming month! Jake, Morghan, Hayden (3) and Ozzie (officially 18months)