Getty Owl Foundation

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.

Fortress Around Your Lungs

From Mark:

The defense of Getty’s lungs is coming along nicely. One of the biggest threats to an SMA baby is a lung problem, such as pneumonia. One of the biggest risks of pneumonia comes from aspiration of something. These kids can aspirate their own secretions, like saliva and mucous. They can aspirate their food, either on the way down the hatch or on the way back up the hatch via vomiting or reflux. They can aspirate anything that goes down the throat. Common colds and flu are especially problematic due to the increased secretions and increased likelihood of an aspiration event.

The lungs are at risk mainly due to a few of factors:

1. Lack of swallow function;
2. Lack of effective cough function; and
3. Increased risk of reflux

SMA robs these babies of necessary proteins to promote adequate muscle tone, and the problems just get worse every day as their strength diminishes. The lack of tone affects the swallow muscles, robbing them of their ability to send food down the esophagus instead of into the lungs. The lack of tone makes the cough function ineffective in that it is not strong enough to rattle around the secretions and bring them up to the throat for proper disposal, usually via swallowing. These kids also often have a weakened esophageal sphincter, which keeps swallowed food in the stomach, preventing reflux.

Much of what we are doing boils down to protecting the lungs. Even though Getty had been swallowing properly, we scheduled a G-tube placement surgery to allow feeding in a manner that bypasses the swallow function when that time comes. Over the past few weeks, however, Getty has been coughing, choking, and gurgling more and more during bottle feeds. It got to the point where we decided to get a nasogastric tube (NG-Tube) placed.

The NG-Tube is very narrow. It has a rubber plug at one end. The other end goes into her nose and down into her stomach. The whole thing is held in place by taping it to her cheek. The capped end of the tube just dangles freely, but we can tuck into her onesie. The initial placement of the NG-Tube is obviously uncomfortable, having a tube jammed up your nose and all, but once in place, Getty doesn’t notice it. Once the G-Tube is placed, the NG-Tube will be removed.

G-Tube placement alters the stomach and increases the risk of reflux. The upcoming Nissen fundoplication surgical procedure is also a lung protector. They wrap the upper part of the stomach around the base of the esophagus and tie it there. That allows food to pass through, but helps prevent reflux and the accompanying risk of reflux aspiration pneumonia. Although Getty is not currently presenting reflux, we think the Nissen is a good lung protection measure to take. Preventative Nissens in SMA cases are controversial, and doctors are split as to whether to do them or not. They are not without risk.

Even though we currently have the NG-Tube, we continue to bottle feed Getty in an effort to keep her mouth and throat as strong as possible. If they are strong, then she will be better able to manage her own secretions. If she coughs through a feed, gets formula gurgling in her throat, or if she just gets too tired to finish a bottle on her own, we feed to the tube. We do this via bolus feed. This means we attach a big syringe to the end of the NG-Tube, pour the remaining formula in, and let it gravity feed through the tube to her stomach. If we know she’s really tired or if we are out in public, we can skip the oral feed and feed straight to the tube. Then, we just flush the tube with a dash of water in a smaller syringe.

We found out today Getty needs more calories than what she is getting. So now we have another piece of equipment to add to our inventory: a feeding pump. We fill a plastic bag with formula, which then gets pumped into her tummy through the NG-Tube at about 1 ounce per hour while she sleeps.

On top of all that, we are using a suction machine to suction her secretions from her nose and mouth. We are using the cough assist machine a couple of times per day to generate a simulated cough to get any gunk out of her airways. She is really quite cooperative with all the machines. As soon as I turn on the suction machine, she opens her mouth and waits for me to begin.

All of this is an exhausting and time-consuming pain. The bigger pain is the emotional pain watching your little girl degenerate and lose strength and function before your very eyes. When I see a child on TV or in public, I am amazed that they can do something as simple as hold their own heads up and move their legs. On the flip side, I know our little girl has needs, and I am happy that we have been able to meet them. I get pleasure knowing we are providing her the fortress she needs, and I melt when I see her little smile.

Kaiser has been a big part of her success, and I thank our Kaiser team. We went a few rounds with Kaiser trying to get a BiPAP breathing machine in connection with the upcoming surgery and also trying to get a PPN feed instead of a normal glucose feed to get Getty through the surgery. With the help of some of our loving SMA families, we were able to get renowned SMA expert, Dr. Schroth of the University of Wisconsin, to personally speak to our Kaiser team by phone. As a result of those conversations, we now have the pre-op and post-op BiPAP plan in place.

On the other hand, our Kaiser gastroenterologist was not sold on the PPN feed even after speaking directly to Dr. Schroth. Dr. Schroth routinely recommends PPN feeds for her SMA surgical patients. However, through these conversations, Dr. Schroth told us that, although she recommends PPN feeds for her patients, there is no scientific evidence to support PPN use. Kate and I have come to accept our gastroenterologist’s conclusion that a PPN feed is not necessary.

Although it is emotionally and physically draining, and I spend the bulk of my days lately on medical issues instead of work, I am confident that Getty’s current medical needs are being met.

Again, we thank Dr. Schroth, the SMA community, our personal SMA friends, and our other friends and family for all your love, kindness, generosity, and support.

In other news, our Kaiser team has plugged us into a Neuromuscular Clinic lead by a neuromuscular specialist at UC Davis who is apparently quite knowledgeable about SMA and is fairly well-connected to other renowned SMA experts such as Dr. Swoboda of the University of Utah, Dr. Wang of Stanford, and others. We look forward to learning more about the Neuromuscular Clinic.

New Upcoming Event Added

We have added a Pampered Chef Party as a new upcoming event!

Click here to check it out!

Thanks!

Getty’s 1st Halloween

From Kate:

I think about this time last year I was just starting to show my pregnancy. I remember Halloween last year and thinking about how fun it was going to be to have little Getty with us. I remember walking the aisles in Target to see what kind of selection was out there for our new addition. I settled on a ladybug costume that had a big puffy body and a equally puffy hat. It was going to be perfect. So should I buy it now or maybe wait until she is born? I decided to wait, and I am so glad I did because Getty isn’t a ladybug, she is an owl.

When Getty was born she instantly looked wise like an owl. Her old soul allowed her not to stress much about anything. Still to this day if Getty does get fussy, which is rare, she has a clear reason for it and we can usually figure it out pretty easily.  Her deep blue eyes are always focused on the nearest face and she always seems to be looking into your soul.

Her cheeks contribute to her profile of an owl. Her soft puffy cheeks are so kissable and become pink when she smiles. Her round belly solidifies the persona of an owl. Now if we can just get her to “hoot, hoot” we should be good. 🙂

We got a chance to meet a terrific couple about a month ago, Robert and Meri Phelps. We had been corresponding with them for months, but only just lately got a chance to meet personally. They welcomed us to their home and we got to meet their sweet little son, Aaron. We felt so comforted to be able to ask lots of questions about SMA and to get a chance to gauge where our journey is possibly going. After lots of conversation, Meri brought out a costume that she thought would be very appropriate for Miss Getty. It was an owl costume that Aaron wore the year before. It was simply perfect. What are odds I thought to myself? I didn’t question it and took it home for Getty to wear.

So the big day came yesterday. I have been waiting to share this with Getty for an entire year. I dressed her in the costume and Mark and I took some everlasting pictures of our little girl.

My thinking, at least right now, is that Getty might have to be an owl every year. It just doesn’t seem right for her to wear anything else. Well we have a year to think about it at least. I think next Halloween, I will let her choose. 🙂

I hope everyone had a wonderful Halloween. We had a great time handing out candy and checking out all of the Spider-men, ghosts, and pirates.

It was wonderful to spend time as a family after our great trip to Santa Rosa. Getty was very tired but in good spirits. She was a real trooper allowing us to dress her up and to take lots of pictures.

Our loyal steed, Cooper, took part in the Halloween festivities as well. He, too, gets an annual costume. He has been a lobster, a ladybug, and this year, he was a pink fairy. He truly puts up with a lot. But I think he was happy that he wasn’t the only one dressed up this year. His sweet sissy was right there with him.