Share Babyortyl

Thursday, December 29, 2011

More exciting firsts.

Two babies in my arms at the same time! Not a first ever, but a first since transplant. Smiles all around!

Later in the day, Pappa held Oakes too. Not a first, but the first time he was held by both of us on the same day since transplant. More smiles.

Bananas!!! Oakes got his first taste of food today, banana baby food and of course he liked it!

Looking forward to boring days with more exciting firsts!

Monday, December 26, 2011

Christmas Day.

Isla holding Oakes, this hadn't happened since Oakes was at home with us in July. I was so surprised at how big Oakes looks!

{Thank you Auntie Yvonne, for the reindeer outfit}

After sitting with Oakes, Isla wanted to stay in bed and "play" with Oakes.

Putting her fingers in her mouth like Oakes.

And here they are playing!

We hope you had a wonderful Christmas!
Much love from the Ortyls

Saturday, December 24, 2011

Merry Christmas!

We wanted to send a warm holiday greeting to all of our family and friends.

Much like the last 9+ months, these last few weeks have flown by. We did not get Christmas cards out this year, but we wanted to reach out to our blog reading friends to say Merry Christmas, we love you all, and appreciate that you have stood by us and supported us this year.

We have so much to be thankful for this holiday season, and your friendship is at the top of the list!

Tomorrow we will be singing happy birthday to baby Jesus, and we will be saying prayers of thanks for all that we have been given this year. An amazingly strong and beautiful baby boy, medical professionals that we absolutely love and cherish, miracle after miracle after miracle, the support of family and friends both old and new, as well we are witnessing Isla become a compassionate, loving, brave and patient little girl and big sister.

May you have a wonderful, safe and joyous holiday.
Love and heart strings from the Ortyls,
Greg, Becky, Isla and Oakes


Greg was at the hospital all day on Friday and saw Oakes on one of his best days. He took a video and posted it in YouTube immediately so Isla and I could take a peak. We both sat at her little table and just giggled along side Greg and Oakes.

Kisses for Oakes.

And here was Oakes today....


...and kissing!

Oakes has moved from the open mouth smile to this new more sophisticated big boy smile. Would you look at those little piranha teeth!?

Monday, December 19, 2011

On the upswing

{Oakes tonight}

Just a quick update to let everyone know that Oakes is doing better. Much better. He has thankfully had a few really good days. Dialysis has been working and since Friday he has lost 4 lbs in fluid, and for his little 20 lb body, that is pretty significant. He came out of the paralytic on Sunday morning and has been awake ever since. They started feeding him again and he should be back to full feed by tomorrow night. They are also slowly weaning his vent.

I spent several hours with him today, and got to hold him for some time. I saw huge smiles, lots of laughing, thumb sucking, everything that I could have hoped for. In fact Oakes was so active kicking and moving around that he rotated 45 degrees in his crib, which is a first.

Since isolation was lifted for our family, I have absolutely LOVED walking right into Oakes room when I visit. I love knowing that he can see my entire face, he can see me smiling and see all of my facial features. But the best part of losing isolation, which I didn't anticipate is that I don't have to wear gloves. I have cheated with the mask for some time now, when I was smiling I couldn't always help myself and would pull my mask down, but the times that my skin has touched Oakes over the last 5 months have been few. It brought tears to my eyes to put my hand on his back and feel his perfect baby soft skin, to run my fingertips over his head and feel his hair, and let him hold my bare finger as he drifted off to sleep.

SO much to be thankful for .
XOXO, Becky

Friday, December 16, 2011

Dine, Drink and Dew More!

If you are a food lover, a wine lover, and a Mighty Oakes lover you will LOVE this fundraiser.

On Monday, January 23, 2012 at 7:30 pm, the Webster Groves Dewey's Pizza location will be closing their doors to the general public for a one of a kind event.

Our dear friend Dave Justice, the General Manager of all of the St.Louis/Illinois Dewey's has gained support from four of the most esteemed local chefs, Siduri & Novy family wineries plus Cravings gourmet desserts to pull off an amazing night of food, wine and support all with the intent to DEW MORE!

On this one night, four amazing chefs will come together in the Dewey's kitchen to create their own specialty pizzas. Participating will be Cary McDowell of Winslow's Home, Kevin Nashan of Sydney Street Cafe, Gerard Craft of Niche and Mike Emerson of Pappy's Smokehouse.

Your meal will include a salad course, four different pizza courses, and dessert. Each course will be paired with a 3oz. pour of wine.

Tickets are $100 per person. We want to stress that seating is limited (about 50 seats) and you MUST pre-purchase tickets. You can buy tickets at any location, or you can call any location, ask to talk to a manager and purchase tickets over the phone using a credit card.

Dewey's already has the above flier printed and included on their menu right now. Seats are already selling! All proceeds will go to the Mighty Oakes Heart Foundation. Plus, at this event Dewey's will be serving for the first time their very own Red Zinfandel. For every glass poured over the next 4 months or so, $1 will be donated to MOHF, and $4 for every bottle sold!

If you have any questions, contact Greg or I, otherwise pick up your phone and call Dewey's!
I have the Webster location of speed dial in my phone, but in case you need the number it is 314-961-1000.

So far, so good!

The quick update is that Oakes is tolerating this day better than I thought.

Although, he had a really rough night. At midnight Oakes was put on a continuous drip of paralytic because he was having fits, but was still d-stating. We got a call at 3;30 am that his nurse changed his diaper, and just that stimulation and stress on his already paralyzed body was too much. His numbers dropped and they had to bag him. In the past paralyzing Oakes would let us gain control of his little system so having him d-stat while paralyzing him was a new all time low. Greg and I were up all night talking about what was going on and calling in to get hourly updates. At 9am they did a bronch procedure at his bedside. I was beyond stressed wondering how he would tolerate a camera going through his airway if he wouldn't tolerate his hiney being wiped, but he did great. His airway looked like a "wet sponge" according to Dr. Michelson. So it is swollen and wet, but no obstructions. And the best part was that he tolerated it just fine. And actually since then his numbers have improved, so passing that little camera through is airway must have helped a little.

Right after the bronch, our old pheresis nurse Emily came back to set up for dialysis. They started at about 11am, and right now, at 12:20 they have already taken off 40ml of fluid from Oakes' belly. He is paralyzed, and tolerating this just fine. His numbers are great, and honestly this is pretty boring. Praying that the day remains this way.

Thanks for all of the love and support.
More updates to come!
XOXO, Becky

Thursday, December 15, 2011

Update on Oakes.

I am completely exhausted, but an update is needed.

I will start with the latest. Oakes has had a rough couple of days. He has been throwing these "Oakes fits", where he fights the vent, bears down, and his numbers go crazy and he ends up getting paralyzed. The fits have happened several times this week, and unfortunately they have been getting worse. I initially thought it was his airway, I thought there must be some kind of obstruction. But slowly over the last couple of days Oakes has been retaining more and more fluids. He is just a stay puft baby right now, and clearly he is miserable. When he retains fluid like this, the extra fluid in his system pushes on his diaphragm, which pushes on his lungs and makes breathing harder and very uncomfortable.

So, we had mentioned before that there was talk that Oakes might need kidney dialysis and it looks like the time has come. I am a little freaked out because it is dialysis. And it is his kidneys. I have kind of wrapped my head around the idea that Oakes is a Heart baby, and Lung baby, but not that he is a Kidney baby. And I am not going to just yet.

Here is the scoop. Oakes' kidneys are damaged, yes. They are not normal, but according to the Kidney doc that I spoke with late tonight, they are in great shape considering all that they have been through. Oakes' kidneys function at about 50%. And he could live with that. Kids don't normally go on dialysis until their function is 10-15%. Since transplant Oakes has been on diuretics pretty much non-stop. His Dr's are constantly adjusting his doses based on his weight and his urine output. And since transplant, we have never seen a huge improvement in their function. You may remember a catheter was placed for dialysis months ago, but was never used. So now, the thought is, the line is there, it can't hurt, it might help tremendously, lets try it. And so, we are going to try it.

Ultimately we want this to help his kidneys, keep Oakes more comfortable, as well as let his lungs and heart have a break too. I am going to look at this like a little kidney function vaca. The first day or two of dialysis may be uncomfortable, but not painful. He will likely have 6-8 hours of dialysis a day, then they will turn it off over night. We can still hold him, move him around, etc. Of course Oakes and all of his numbers will be watched carefully, and in a few weeks or months we may not need it anymore. That is the prayer at least.

Backing up more, last Friday Greg and I had a Care Conference with Oakes' team. It was the largest CC to date for us. In the past we have sat in a cozy room with 2-3 doctors, but this was a dozen people in a conference room. Overall it was a good conference, maybe the best one yet, but still these meetings are overwhelming to me. I left the meeting, walked straight to Oakes' room and just cried. I think for me it is the reality of the situation that just feels so heavy. Day in and day out, I can somehow handle everything But plop me down and talk big picture, and let me soak in just how many brainiacs are involved in Oakes' life and its just SO much.

In the meeting we learned that there was some concern about Oakes' kidneys, but you have the latest there. Oakes got a new broviac line placed last week. The procedure was successful, but it was complicated and the team is ultimately concerned that they are losing access to Oakes' veins. Several of his larger veins are either collapsed or clotted out. He could live to adulthood, and his vein system will compensate for the lost veins, but in an emergency situation, gaining access to a vein could be a disaster if they need to. But, they have the broviac now, it should last months, so that is not an issue we need to deal with now. We also talked about long term care for Oakes and feeding him. The team is in agreement that Oakes should soon get a GJ button. This will basically be a port where we can feed Oakes right into his intestines. It can go home with us, is low maintenance, safe, and we can work on teaching him to eat while he has it. Both of these issues should freak me out, but they don't. This is Oakes we are talking about after all! The last issue we discussed was Oakes' airway. The bottom line is that everyone is on board with moving forward with the biodegradable stents. I may have mentioned some of this earlier but they are not FDA approved, and are not available in the states. They have been successfully placed in children's tracheas in Europe for some time now, and even in kiddos much smaller than Oakes. The have not been used in the States at all, and they have never been used in Bronchial tubes, which is where Oakes needs them. Deep breath. So, Dr. E, and St. Louis Children's started filing paperwork on Monday. Children's has to go through a legal process, then they go through the FDA to get the stents. We have been advised that our insurance company will likely not pay for the stents. The stents will be custom made for Oakesie and they come from the Czech Republic. They take about a month to get, but we were told the process could take 6-8 weeks total. The surgeon that has been placing them in children in England is now in Austria. Dr. E & Children's are arranging to bring him to STL to place them in Oakes and teach our amazing team how to place them in other kiddos. On Friday when we had this conference, Oakes was looking great. We thought we would just go to the OR occasionally for dilation while we waited for these amazing stents to get here but things have changed now. The dialysis doesn't change anything as far as the stents go. And really, the best case is that while we are waiting for stents, Oakes' kidneys can heal a bit, which will get us home sooner. In the case that we need the stents sooner, we were told that someone might need to go to the Czech Republic and pick them up. Apparently the hospital can not do it because of the FDA, but it would be completely legal for us to go, buy them, and bring them back. We have already looked into cashing in some American Airline miles for a trip, but I have a feeling I will hear we will hear from several of you that you are ready to go on what I imagine to be a very James Bond stent retrieval mission for us! We will keep you posted on all of this.

Two exciting bits of info to share. One is that in the care conference when we were talking about the GJ button, I asked if we could at least try to feed Oakes, just offer him food, see what happens. I learned it's not that simple, but in my little Momma brain it sure is that simple. The team did agree that we could start doing speech therapy with Oakes. See if we can get those oral instincts to kick in. Elizabeth, our sweet speech therapist that worked with us when Oakes was born came by to see Oakes on Tuesday. I had brought in some breast milk (we still have a frozen stash) and we gave Oakes a taste. Elizabeth just dipped Oakes' fingers in the warm milk, he instantly brought his hands to his mouth and just smiled and squirmed and kicked around. He was HAPPY. I loved every second of it. Isla was with us, sitting in the crib just watching and giggling. She even helped to dip his fingers, it was the sweetest thing! The other bit of good news is that Greg and Isla and I are no longer under isolation, which means when we visit we don't have to wear gowns, gloves and masks!! I mean really, I'd wear it till Oakes is 65 years old, but man its going to be so nice to get rid of that junk. I am mostly excited that Oakesie will be able to see our faces and feel the skin on our hands when we touch him and not latex gloves. I couldn't keep my hands off of him this evening for that very reason.

I will post an update tomorrow as to how day #1 of dialysis goes. Thank you in advance for all of your love and prayers, deep breaths, and heart stings.


Here was Oakes over the weekend, cuter than ever!

Elizabeth with her little cap full of gold. Notice, Oakes is not very interested.

Dipped fingers going to mouth...

...Elizabeth has Oakes' attention!

Hello, new girlfriend!!

Oakes and Yvonne over the weekend.

Serious lovefest.

Then there was the Pappa lovefest!

Sunday, December 11, 2011

Another handful of picture

Isla and I with Nel the elf dog.

Isla looking at Oakes.

And Oakes looking at Isla.

Isla hanging out in one of Oakes' chairs.
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

Aunt Ellen visited last week!

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

We also had a visit from Superman. Oakes taught him a few things while they were hanging out.

Oakes posing.

Superman was taking notes!
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

Oakes tucked in sleeping on his side with all of his animals and blankies.
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

The booties that Nurse Emma made finally fit!
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

Isla and I went to a Christmas party hosted by the Lung Transplant Team and Children's. She was less than thrilled to see Santa, and asked me after where Mrs. Clause was. She has told us over and over she doesn't want Santa to come to our house, but Mrs. Clause can come. And she wants her to bring ice cream!
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

And this is what happened when I thought I could do some Christmas shopping WITH Isla. What was I thinking? Isla was thinking, how can I get this puppy home with me? And it worked!

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

A visit with Pappa

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

Yesterday Oakes hung out with Nurse Tammy all day. And he was reaching for a grabbing her hand. This is a new move for Oakes, so I loved seeing it!

Lots of smiles for Tammy!
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

Then reaching for one of his books.

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

Oakes getting his trach ties changed. Not a big deal, it happens almost daily but he doesn't love the attention. I, however love seeing his sitting up.

Madison comforting Oakesis.

Almost done.

Mrs. Kim came in to get a peek of the big boy too!

Usually, attracting attention is a bad thing ont he floor, but there are times when people just want to come and visit and see Oakes which are times when we welcome a crowd!

Doesn't Oakes look so big? He is just shy of 20lbs!
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

Then finally, I got my hands on my sweet Oakes and Madison got a few pics!