First, Oakes is resting peacefully this morning. The goal for today and the next couple of days is to keep Oakes comfortable and asleep. Dr. Doctor has put in an order for boring and we are thrilled. While I have a minute I wanted to share....
The Mighty Oakes Heart Foundation is being honored at a St. Louis Billikens Basketball game on January 11th at 8pm. SLU vs. Temple. There will be several charities honored that night, all that have affiliations through SLU alumni. (Greg went to SLU High, then SLU for his undergraduate and graduate degrees.)
We have been given 75 tickets to bring family and friends and supporters of our foundation, so if you are interested in going, please let us know, we would love to have you! Bring you kids, your neighbors, your co-workers anyone that you think would love to join the MOHF Billikencheering squad at the Chaifetz arena.
A huge THANK YOU to Nicole Weckherlin for submitting our foundation for this honor. We love you Nicole!! XO
As soon as I heard from Nicole about the event I started scrambling to get MOHF T-shirtsmade so that we might look a little cohesive as a group. Later today we should be getting a shipment of 50 T-shirts that will be for sale. They are dark gray with a white logo on the chest. We will have fitted women's sizes and standard men's sizes. We will be working to get these on the MOHF website for sale, but for now we will also be selling them on our own. Shirts will cost about $15.
If you are interested in either attending the game or getting your hands on a T, please email me, I will give you the scoop: firstname.lastname@example.org
After the game, the next MOHF event is the 2012 Fight For Air Climb. This event is taking place in St. Louis at the Metropolitan building, and it is put on by the American Lung Association. The goal is to climb 40 flights of stairs, and raise money for the ALA and the kicker is that this event takes place on Oakes' first birthday, March 10th!
So, we will climb for Oakes, we will climb for others who can't breath on their own, and for those who are, who have, or who will fight to breath in their lifetime. Are you interested?
Of course, I am registered as part of the team, but I have not really started training. Obviously this will not be competitive for me, but very symbolic. If you are in St. Louis and you want to climb with the Mighty Oakes team, we would LOVE to have you. I would love to have you! I would be honored. I will be in the slow heat, but other team members will be blazing far ahead of me, no doubt! (When I registered online I noticed that there are teams of firefighters that do this climb in full gear!! - tears!) And if you are not in St. Louis and you want to participate we would love to have you join our team as a virtual climber. You know will take all of the love, support and deep breaths we can get.
For more info, check out the website:
Our team is simply "mighty oakes", but again, contact me with any questions.
My Mom, Connie/Ena is in town this weekend with Grandpa Dale. They have already started to spoil us. Isla is at the Zoo with Ena, and Grandpa is at home painting big girl bunk beds that he built for Isla. Greg is working and I am sitting with Oakes watching his chest rise and fall, thinking about very little other than that.
Oakes will be 10 months on the 10th of January, next week. I can hardly believe it, double digits. And on the 22nd we will celebrate 6 months with new lungs! Amazing. Just amazing. I have felt so emotional thinking about this time marker. I am thankful and feel blessed. I love those lungs, the baby that gave them to us, and the babies family so fiercely. I know our 6 month celebration will be a sad day for another family, but I hope they feel some joy and some comfort knowing that our unknown baby and unknown family is alive and doing OK today because of the decision that they made nearly 6 months ago. Just looking at my little world, my family, and my son, I have been keeping my eye on this 6 month mark from the day that Oakesgot his new lungs. In the brutal survival statistics that we have read through about the recovery timeline for pediatric lung transplants, the 6 month mark is the first real milestone. Up until now, I have been thinking, if we can just make it to the 6 month mark! Please, God, let us get there! The first 6 months are always the most critical, and the reality is that we have kind of squeaked on through, but making it to 6 months, means making it another six months is more probable. Yes, we are still in the ICU, but are not in the scary intense place that we were in for months where Oakes truly was fighting and holding on and just so critical. We are kind of in the smooth place now. We have hit bumps, but recently even his care has shifted a bit from having been reactive to a bit proactive. We aren't just scrambling and managing every crisis that pops up, we have been taking away meds, adjusting his routine with more long term care in mind, and just all of the normal little things we are able to do - Isla playing with him, holding him whenever we want, having him sit and taste food - 6 months out and I feel like we can exhale a bit and celebrate this good place.
A couple of months ago when Oakes was having some trouble breathing and we were talking about going to the OR to dilate, Dr. E told Greg something like, "Oakes has been drifting right above the tree line for some time now and if we hit a bump, he quickly starts to descend, it's like he doesn't have a lot of reserves" Greg came home and told me that I welled up with tears and shook my head back and forth. I heard what he was saying, I got it, but I had a different perception. I could see him cruising above the trees too, but I saw him cruising, coasting, gaining momentum, and waiting for the right time to really take off. I feel like in the last 6-8weeks we have seen a change with Oakes. His reserve is not full, he is far from the normalstrenght of a 10 months old, but his endurance has changed and we are not just coasting. There were times where Oakes didn't do aggressive. He didn't make bold moves and didn't respondfavorably to them. But recently, when a big change has happened I think he has taken the challenge, he has said, "I will try, I think I can do it" and then usually he holds on for a few days and is saying, "Momma, do you see this, I CAN do aggressive!?" Or, "Dr M, yes, you can change my vent settings, I can take that too." I think Oakes wants to please us, he wants to show us what he can do, he wants to show us that he is a big strong boy and of course I think he is so excited about this talk of coming home. For the most part he really has held his own, he has made me reconsider how he can handle these aggressive moves, but there have been a few times that he has said, "Ok, I'm done with that, I can't keep it up, I'm tired....Momma? Dr. M?.....I need help now", and I think we have done a pretty good job of listening to him. I am sure you remember that in the past it would takes days for him bounce back even weeks, but now its much quicker. It seems like within a day of anything he is awake and smiling again. A change I hadn't seen coming, but I love it now that it is here.
My little Oakes. He's not just this little acorn rolling around in the soil. He has felt the sunlight, and benefited from the rain. He has roots now. They have been digging in for some time, andOakes is really starting to hold his ground.
So, my eye will be on the 22nd for that 6 month marker, and then I will have July 22nd in the back of my mind for the 1 year marker, but in between I will just try to keep doing what we have been doing all along. Taking the days as they come, taking deep breaths, smooching all over both of my babies, hugging Greg tight, praying for more miracles, for more healing, praying that we reach more milestones, that we add to our list of firsts, praying that we continue to adjust and manage the needs of Oakes and Isla just the absolute best that we can. I will say prayers of thanks for all that we have been given and for all of the blessed days that we have seen so far. I will continue to pray for wisdom and clarity and the consciousness to slow down and actually live each day with Oakes and with Isla and make the days, weather they accumulate to months, or years or dozens of years, really count.
Sitting and watching Oakes breath, watching his chest rise and fall, hearing air move in and out of him, it is easy to be remind of such peaceful ideas, and such important prayers. I will keep you all in my prayers too. I will continue to say prayers of thanks for our friends, family and their love and support.
Love to all of you.