Getty Owl Foundation

Oy Vey Kaiser

From Kate:

Oh man where do I begin. Let me start out by saying that our little Getty is such a trooper and she is doing fine considering all the nut cases that are taking care of her, no scratch that, Mark and I are taking care of her and they are advising and pontificating. Let me explain.

We arrived around 10am this morning, all packed ready to go. Admittance was simple enough, a bit of paperwork and few yes and no questions and then we were whisked off to our room in the PICU. Getty was really hungry, so we took care of that right away. We meet her first nurse, nice lady. She gave us a brief tour of our 12 by 12 room and then she was off to assist another patient. After Mark brought up the rest of the stuff, I found all the drawers I could to “get comfortable”.

I originally thought I would be freaking out at this point, but I was remarkably calm. Mark is truly Getty and I’s rock, so I knew that if he was fine, then things were going to be fine.

It wasn’t more than an hour when a few labs coats came in to let us know about the newest “update”. Let me back up a bit before I tell you this great joke. Getty was admitted this morning for the sole purpose to acclimate to the bi-pap machine. The idea is to make sure Getty is good and comfortable with the machine so when she needs to go on it post surgery, she won’t fight it, while at the same time healing from her surgery. Okay so here we are an hour in and the team tells us that they do not have an infant mask for her to use for the bi-pap and they won’t be getting it until the 17th, which is the day after the surgery. I am hoping that you see the joke somewhere in there.

So we considered our options for some time and we decided that Mark would drive to Davis, meet up with a fellow SMA dad,  that graciously loaned one of their residual infant masks, and head back so we can get this acclimation process started.Robert and Meri we can’t thank you enough.

While Mark was out, Getty and I were able to get some good mommy and baby time. I turned on her fish light and she finally went down for a nap. Her and Snoopy slept for a good two hours. I enjoyed just watching her sleep so soundly.

Getty awoke and I took her out of her bed and we cuddled while we watched Harry Potter. It was so nice just to sit quietly with her. I couldn’t help but wonder what she may be thinking about all this fuss about her. She surely didn’t seem to be phased by all the conversations, all the probing, and the new environment.

Mark got back, mask in hand and a tired smile on his face. About an hour later the labs coats came back in to let us know that since the mask was not sterile, that they would need to basically boil it to be able to use it. The woman in charge basically told us that the option was that she would take it home and sterilize it, which would mean we would not be able to acclimate tonight. She would also be contacting the only DME place around that may have the mask. I couldn’t stop myself, I stopped her with as much tact as I could and asked her what went wrong, how on earth could this have gone so wrong? At one point I said, didn’t you know she was coming today? At that point I pretty much stopped talking because my next question was going to be pretty snarky, so I stopped.

Basically the right hand was not talking to the left hand. Oh Kaiser I was really giving you the benefit of the doubt, we brought our daughter here this morning with a clean slate of expectations, I brought no baggage of  past history with me and you do this to us. You are making me grumpy!

So it is possible that the DME place could have the mask, it is possible that Getty gets the opportunity to start the acclimation process tonight. BUT, if that doesn’t happen tonight, then the sterilized mask will be here in the morning and we will start fresh tomorrow.

Getty is on her third feeding since we got here, she is in good spirits, my mom has joined us and it is so nice to have my mommy here to be near us.

Being in this 12 by 12 room doesn’t seem so bad so far, there is a cafeteria downstairs, there is cable in the room (Mark and I gave up cable about two years ago and I forgot that there were so many channels), and we are here as a family. I understand this is only day one, and I am aware that this is the easy part, the moment we have to let her go to surgery feels like a nightmare, but my hope is that by Tuesday I am more at peace with it.

Again we will try to keep posting as our journey continues. I wish Getty could post something because I think she would tell you that her bed is huge and fluffy and that she is so happy that Snoopy, mommy, daddy and grammy are here.

To summarize at the time I write this it has been a total waste of a day in the hospital. I have heard that hospital stays cost roughly $10,000 per day. Could you imagine what $10,00 could mean for SMA research? Oy Vey!

Quickly Approaching

From Kate:

This morning has brought with it some uneasy feelings. Getty’s surgery is quickly approaching and I feel my heart pounding a bit faster. Making list after list to make sure I am not forgetting a single thing for our stay at the hospital brings its own anxiety. We were informed on Wednesday that Getty will be admitted on Saturday morning.

In my mind I was planning for Sunday and when we got the updated date, I felt uncomfortably jarred with the knowledge that we have lost one day of “regular” life.

Since SMA has come into our family, it has always felt like an unwanted guest. It has felt like a force that just kind of lingers in the house only to slowly rob our beautiful daughter of strength and that, frankly, is it. Getty smiles every day and giggles with delight in just about every environment and situation. Her mind is alert and so incredibly inquisitive. Every breathing exercise she embraces and she is such a trooper, unaffected by the noises from the big boxes that either blow air into her lungs or suck the secretions out of her little mouth. Her spirit and her soul are unaffected by this disease. She frankly couldn’t care less about who you (SMA) are, all she knows is that loved ones surround her with unconditional love and support and she is free to learn, to express, and thrive.

So I am making a list of things that need to get done before we leave, a list for things to take, a list for things we need to make sure we advocate for when Getty is admitted, a list of toys/blankets that Getty needs to feel comfortable, and one mass list that includes all of my lists. 🙂

So what can we except when we get there? Too be honest I haven’t thought about it. I am learning that the only control we have is that over our child. I am not going to consume myself with worry at this point, what would be the point? So I will say this, we will have our own room, every nurse will be sanitized and aware of her diagnosis and if we need to educate we will. We will make Getty’s environment as close to normal as possible, right down to our routine for bedtime.

Even though this is uncharted waters for our family, Mark and I are united in that this is what’s best for Getty. The g-tube and Nissen procedure will give her the ability to eat safely and that gives us peace of mind.

Since the surgery is quickly approaching, yes there is anxiety, uncertainty, and overall unrest, but we are doing this together and that in itself gives us peace. We will be in the hospital together and we will walk together.

We want to thank all of our family and friends that have offered their love and support. Thank you to the SMA community. It has been so valuable to lean on a lot of you for advice and resources. We want to thank Mom for her willingness to hold down the fort while we are gone and to take such great care of our older baby, Cooper.

So here we go, we will try our best to keep Getty’s blog updated in these next few days.

Fore for Miss Getty!

Golf Tournament

There are some really incredible people out there in the community. Some fellow Del Campo Alumni are putting this tournament on for our little Getty. Marcus Marquez, owner of the L Wine Lounge in Downtown Sacramento and Tony Glover, owner of Golf Lifestyle Magazine have been gracious enough to choose Getty for their annual charity event. Thank you so very much on behalf of our family. We hope everyone has a fabulous time.

Host:L Wine Lounge & Golf Lifestyle Magazine

Date: Monday, December 13th

Schedule of Events:

• 9:00am-10:00am: Check-in & Registration
• 10:00am: Putting contest begins
• 10:20am: Welcome & Tournament Instructions
• 10:30am: Tee Off
• 3:00pm: 19th Hole reception opens
• 3:45pm: Dinner served
• 4:30pm: Live auction begins
• 5:00pm: Award

Place: Granite Bay Country Club 9600 Golf Club Drive, Granite Bay, CA 95746

If you are interested in being a sponsor and/or player please email Chevas Rainer at chevasrainer@gmail.com

Chevas, thank you for helping put this event together for Getty, we love you and we can’t wait for you to meet our little missy.

Finally a Mommy!

From Kate:

The leaves have been turning but the weather had yet to match, until today. What a pleasant way to wake up this morning. Rain falling as the wind picked it up only to throw it around for a few seconds before its inevitable landing. The unstable weather outside makes for cozy and warm feelings inside. I always look forward to this time of year. The colors outside are breathtaking and the air is crisp.

This morning I awoke to a quiet and calm house. The aroma of coffee filled the house, Nora Jones was playing in the background and Getty and I were snuggling on the couch. Everything was just right. Today I finally felt like a mommy.

I had waited a relatively long time to have a child. There were so many things I wanted to accomplish before devoting my life to another human being. I wanted the degree, the career, and the relationship to fit nicely into my world until taking that next step. I wanted to experience life, I wanted to drive that car, I wanted to see those places. As a young adult I had put such expectations on my life. I had placed such a threshold for success just far enough out of reach so I could challenge myself to be the best at what I did. I read, I questioned, I conquered, or so I thought.

So as Getty and I were laying on the couch this beautiful Sunday morning it completely and finally occurred to me, I was a mommy. Perhaps all of those things that I had accomplished weren’t necessarily meant for self-gratification, perhaps it was to prepare me for right now. I have absolutely no regrets in my life and I am so glad I was able to accomplish all of those things in my younger years because now I have nothing keeping me from just being Getty’s mommy. That’s all I want to be and it is such an honor for her to have picked me to be her mommy.

We take delight in every “poop”, every “burp”, every “anything”. I take great joy in getting her ready for a nap. Getty likes to be tucked in a certain way and I love making sure she is just right. I love watching her transition to sleep. I remove her blanket when she wakes and Getty always does a dramatic stretch with her arms, it is so cute.

Getty has been talking a lot more. Selfishly I have been awaiting some coherent word to come out of her mouth, but I will take any babel she gives us. She has such a sweet voice. A soft and reassuring tone that in time might include some dada, and momma.

I know lots of people who have children.  When we would have conversations about their kids I was always so struck by the level of love that would gush from their mouths about just daily milestones that their kids were achieving. Before Getty, my brain couldn’t fathom how a person could talk for a good hour about how their child liked bananas but now is starting to like carrots and going to great lengths to explain their game plan to incorporate beets. I would always leave those conversations perplexed, “what happened to my friend, how could one person talk about food their kids eat for so long?” I truly thought at some point in the pregnancy they had lost their mind and perhaps would never recover to what they once were.

Now I get it. I am that parent and I am so incredibly proud to be. Getty and I talk all the time about what the plans for the day are. We go into great lengths about what she is going to wear for the day. We talk about the bubbles in the bath that she squishes between her fingers. Last night we talked about her new little “stuffed” kitten, Mittens that her sweet cousins Isabelle and Clare got her. We talk and talk and talk.

I am learning that is what life is all about for me. Giving Getty everything I have to make sure she is happy, healthy, and thriving. Sharing all the moments together and to enjoy each others company. Being a mommy is awesome.

Getty’s More Permanent Setup

From Mark:

We are eagerly anticipating a weekend visit from my brother, Mike, his wife, Michelle, and their twins, Claire and Isabelle. They are driving up from Temecula to spend a few days in Sacramento.

Their visit inspired me to find a more permanent home for Getty’s machines today instead of housing all this clutter on our dining room table in the middle of the house. Our house isn’t big, and we have been taking in durable medical equipment (DME) faster than we can place it somewhere.

I went to a few stores looking for appropriate storage, perhaps an enclosed cart. I ended up using a table we already had in the house. I put the table in Getty’s room, and situated the machines, catheters, and related supplies. It’s not perfect, but it’ll do for a while.

We also got a brand new car bed on loan from FSMA. It’s wonderful, and I can’t wait to try it out!

As seen in the photo below, Getty’s suction machine is on the left, with suction tubing and oral and nasal catheters. All the suctioned secretions end up in that container, which we wash out daily.

The bulky machine in the center is the cough assist. The white tubing has a little oral-nasal facemask on the end of it. We just check the settings, apply the mask, and let the machine cough things up for her.

Next to that to the right, we have mouthwash and Dixie cups to keep the oral suction catheter and tubing clear and fresh between uses.

The little pink thing on the paper towel is a rubber percussor. We use that to tap on her back and chest to help loosen up any gunk in her airways.

Under the table, we keep supplies such as extra suction catheters, tubing, etc. We also put a little trash can down there.

You can click on the image to expand it.