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Friday, January 6, 2012

Foundation updates and words from Becky

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:

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.

Thursday, January 5, 2012

Thursday Night Update

As Greg mentioned below when he posted pictures earlier, todays visit to the OR went well.

First, nothing was found in his stomach. Whatever was there must have passed through his system. Adios, "thing".

Next, I made a mistake in saying that he was getting an JG button. He simply has a G button, as in Gasto. Feeds will now go straight to his stomach instead of bypassing the stomach and going to the intestines. I don't know how I missed that.

So, PD gone. Adios.
Goodbye tape and tubes on the face.
Hello chubby cheeks and hello G Button.

In addition to the G button there were two other small issues that were taken care of in the OR. Since Oakes has had reflux issues, and we are now feeding the stomach they preformed a Nisson fundoplication on him. This is where the top of the stomach is wrapped around the bottom of the esophagus and stitched in place. This should greatly help to prevent reflux. In most of us, reflux is uncomfortable but not a huge health threat, but if Oakes were to repeatedly get stomach acid in his fragile lungs or airways it could be a significant problem. After the Nisson was completed a quick glance at the bottom of the stomach showed that Oakes'pyloric sphincter, the muscle that allows digested food to pass from the stomach to the small intestines was a little abnormal, it was a little too thick and this could have been contributing to his reflux issue. A Pyloromyotomy was performed which corrected the issue. Dr. Tarr, who performed the surgery today said this issue is very common in lung transplant patients.

So three hours in the OR and Oakes is looking good. He is not feeling so great right now, but in a few days I hope to see huge smiles sandwiched between chubby, rosy cheeks.

During those 3 hours I had several really good conversations with some of our favorite doctors. Dr. Lee came by to check on Oakes and I. Dr Eghtesady came to check on us, Dr. Michelson, Dr. Murphy, and at the end of the day, Dee Dee, Dr. Eghtesady's research nurse and single person in charge of pushing Oakes' stents along. She gave me a very different update from what I had gotten earlier in the week. She said that the stents have not been approved by the FDA, but she thinks that we will get the approval next week. She left me with an 8 page consent form that we needed to sign and get back to her so that the final paperwork could be submitted. Once the FDA gives her the go ahead the order will be placed and the stents will begin to be fabricated. She confirmed 2-3 weeks to get them once they are ordered and she didn't think that we would need to launch a stent recovery mission to get them. Anyway, sounds like we moving in the right direction and should not be too far off of those February /March time frames. The other interesting piece of info that I gathered from Dr. Eghtesady was that he now thinks that Oakes may only need the stent on his right side, and not the left, which is exciting.

Thank you for all of the prayers and sweet words today!
Love and heartstrings to all of our amazing friends and supporters!
More chubby cheek pictures to come soon, XO

Pics Of Cute Boy With No Tubes

Guest blogger today! Just couldn't resist sharing these new pics post-op of Oakesie. Surgery went great and he is resting peacefully. Look at those cheeks!

Love G,B,I,O!

Wednesday, January 4, 2012

The Happy New Year update.

Happy New Year from the Ortyls!
So far, 2012 has been a good year and even though last year was jam packed with "firsts", I have a great feeling that this year will be full of firsts that we will really be celebrating!

So here is the scoop.

Tomorrow Oakes heads to the OR to get his JG button, he is having his PD drain removed and to have a little unidentified object removed from his stomach.

For sometime the JG has been on the table. Oakes has a small ulcer like sore in his esophagus, likely from the current NJ tube that runs from his nose to his small intestines delivering formula. Oakes had reflux issues before his transplant and since the transplant there have still been issues with reflux, so planning for the future, a JG is the best option on Oakesie. The JG button is a little port that will be placed in Oakes' stomach. As of tomorrow, we will be able to feed him directly into the stomach with the feeding tube, and later when he is at home we will do the same thing. Open the port, feed him a liquid meal and continue on until the next feeding. Not only will we get the annoying tubes out of his nose and esophagus, but this means no more need for tape or tubes on the face!! I honestly am more excited about him being sans-tape than I am about making feedings easier! The memory card on my camera is clear.

On Dec. 22, I noticed there was a pretty nice amount of blood being pulled out of Oakes' stomach. So Oakes has the NJ tube in one nostril, which delivers food to his small intestines. The other nostril has a tube that sucks bile out of his stomach and into a clear little collection cup. This is called a Replogle and this is where I saw the blood. Sometimes the suctioning of the Replogle can irritate the stomach and it may bleed but the next day and ultrasound showed that there is some little thing in Oakes stomach. And we do not know what it is. I think my exact words were, "You have got to be Fing kidding me!" Actually, that was not exactly how it sounded cause I used the real F word. This "thing" does not appear to be piercing the stomach. It does not look like tissue. It looks perfectly round, and metallic. But it does not show up in X-rays, so it can't be metallic. No one knows, but it is coming out tomorrow.

Over this past week Oakes came off of Milrinone and we have also seemed to take pretty good control of his issue of being overloaded with fluid. Milrinone is a sophisticated medication that helps the heart relax and pump more efficiently all at the same time. It also causes the blood vessels to dilate, so there was a theory that the dilating vessels were causing blood flow issues with the kidneys and in turn effecting Oakes' kidney function. So the milrinone was weaned, Oakes has dried up - his belly has shrunk down, he isn't so bloated and so far, so good. If I were saying this out load in Oakes' room I'd be whispering and tip toeing away from Oakes so that Oakes' little heart and kidneys could not hear this news. First of all, Oakes has been on Milrinone most of his life. And lots of heart kids need it for years and years. Actually when we came home to wait for his transplant, we were given the smallest backpack ever to store the dispensing milrinone in. Lots of toddlers wear these packs as they play and walk around all while getting a constant drip for milrinone. So to be off of Milrinone feels enormous! I asked at rounds on Monday, "So are we allowed to get excited about this yet" and I got some furrowed brows and quiets nods side to side. Not much was said, no one wants to jinks anything, knock on wood, type on keypad, but after 2 weeks without milrinone or any other substitute we can get excited. We are still in the wait and watch mode. So don't do a full on happy dance yet, but be prepared, please.

I mentioned in the beginning of this post that tomorrow Oakes will have his PD drain removed. Since he has dried up, and his abdomen is small, the PD drain (Peritoneal Dialysis drain) is going away. No more dialysis for Oakes! Ok, do you happy dance now.

The last time I posted lots of details we were just starting dialysis. His doctors thought that he would need the dialysis for several weeks and he only had it for one week. It seemed to do the trick just fine, but now it seems like the milrinone was the missing piece that made all of the difference!

Right before Christmas I was sitting in Oakes' room holding Oakes, he was snoozing, I think I was buying Christmas gifts online on my phone and our friend Dr. Michelson came in to chat. We talked about Oakes and the latest with him at the time. We talked about the stents, and all kinds of stuff, then at the end of the conversation Dr. M through out that he had a little goal to get Oakes home for Valentines day. I hardly got excited, I think everything that I have learned about time frames on that floor has taught me not too, but I told him, " I will take your Valentines Day goal and give you an extra month. Oakes turns 1 on March 10th and I would LOVE to celebrate that day with him at home." Dr. M had a huge grin on his face and he agreed that that is a great goal. As he walked out of the room he mentioned that he wanted to be invited to the party and I assured him that he is invited to EVERY SINGLE birthday party that Oakes & Isla celebrate.

March 10th is not quite 2 months away!! Hopeful happy dance now.

So the stents. They have officially been ordered. Between Christmas and New years the FDA approved the use of the stents. On Monday morning Oakes had a CT scan and 3-D images were taken of his airways, which were sent off to Austria. Building the stents will take about 3 weeks, maybe less, so the stents could be placed in about a month?! The other exciting news about the airways is that Oakes has not required ballooning of his airways in almost a month, which is great! It seems just amazing.

So if all of this isn't exciting enough, here is some more info that will make you smile. Last week Oakes had his first taste of food. Baby food bananas. Yum. He loved it. He got one little taste and was wide eyed, flailing his arms and legs, ready for more. So we will continue to offer him tastes of food. His reflexes are good, he moves his lips, brings his tongue to his lips - slowly but steadily we will get him eating by mouth.

When Oakes is awake he is happy and alert. He is starting to move more. If you put him on his side he can push himself to his back. If he is on his back with toys overhead, he will kick and bat like crazy. He may be a little athlete after all. Right before Christmas he realized that his hands are his own. A milestone that most babies make much sooner, but we will take delayed milestones, thank you very much. And he isn't really sucking his right thumb like he used to. For about a week he was grinding his teeth, thank goodness that stopped. Now, he holds both hands up to his mouth and just kind of rests them there. He might put his index finger in his mouth, but you never know, he's just trying out new fingers I suppose. Just today, I asked Daniel, his nurse if he knew where if at all Oakes fell on the national curve for height and weight. When Oakes was admitted to the hospital pre-transplant he was not on the curve. Not even close, which was devastating to me. All moms want a fat healthy baby after all. "Failure to thrive" are words that no Mom wants to hear about their baby. So anyway, we did some digging, and plotting and discovered that Oakes is in the 50th percentile in weight, and he is in the 3rd percentile for height. We are on the curve, people! Happy, happy, happy dance!

Lost of firsts to celebrate already!
Off to bed for this Momma.
I will post updates and photos tomorrow.
Heartstings to all of you.

Oakes swinging and kicking at his new mobile made by Isla.

Our last visit with Nel. Nel the therapy dog has retired! We love you and your silly costumes Nel, we will miss you sweet girl!

Finding his hand.

On New Years Eve, I went up to give Oakes a smooch at midnight. He slept through every second of the excitement.

And by excitement I mean, a line of beautiful, intelligent, super-loving, and all around amazing girlfriend/nurse/aunties lined up to smooch him right after me!