The Story of the Shunt

A good luck kiss from my big brother!


Daddy loading me up


In the preop room watching the fish tank and waiting to go into surgery.



Sleepy from surgery

A little over 24 hours later and we are home!! (don't know if you can see it but his fontanelle is already sinking in quite a bit, also it is becoming complicated to get a picture without big brother wanting to be in it too:))

A side view of the shunt

Grayden did amazingly well with his shunt surgery. He was taken back into the operating room around 8:50am on January 26th and was finished and in the recovery room by 10:15am. It was one of the most difficult things that I have had to do thus far, sending him into the OR and trusting in the neurosurgeon. He slept most of that day and the few times he did wake up, he woke up crying and you could tell he was in pain. We provided him with pain medication for the entire day and through that first night. The next morning, however, he woke up happy as can be, with a big smile of his face! We were discharged and sent home around 11:30 on Thursday. Grayden spent the next day at home with Grandpa Jeff and continues to amaze me with how well he is doing. He has been smiling and giggling a lot!! So now we just wait and hope that things continue to go well. We are hoping for no infections and for the shunt to be problem free.

If you are interested in seeing a diagram of what a shunt looks like and where it is that it is placed, follow this link.

http://www.ucdmc.ucdavis.edu/cancer/pedresource/pedres_docs/VentriculoPeritonealShunt.pdf

Wow

What an emotional day. I am literally exhausted. I had mentally and emotionally prepared myself for Grayden's surgery today, even though it is the last thing in the world that I want for him. Shortly after we arrived at the hospital however; we were told that the surgery would need to be postponed because Grayden had a low grade fever. Don't get me wrong, I was a little relieved that he would not be having surgery, but knowing that he still needs doesn't let the relief last long. I have this false sense of hope that maybe when we go back they will somehow decide that he doesn't need one after all. Maybe it is my lack of sleep that is causing me to have unrealistic dreams. I am emotionally drained and so very worried. Worried that somehow in some way what I do is going to affect this whole shunt ordeal, when realistically I know it doesn't really matter. I guess I just keep dreaming that somehow I can change the outcome.

Sorry about the babbling, just feeling totally overwhelmed.

Let's pretend that airplanes in the night sky...

Are shooting stars. We could really use a wish right now, a wish right now.

This is the song that was on the radio as I pulled out of the parking lot of the neurosurgeons office today. How appropriate. Today our wishes would be:
1. Please let the neurosurgeons hands work as brilliantly as they ever have on Monday morning as he is placing a vp shunt into our little Gray's brain.
2. We wish for a fast recovery for Grayden with no infections following his surgery.
3. We wish for strength for mom and dad and grandma's, grandpa's, aunts, uncles, cousins, and especially big brother as we wait for the surgery to take place and be complete.

This is not the road we wanted to travel. This is what we most wanted to avoid. But this is what we know-that little tube will save our little guy's life. It is what he needs at this moment because the fluid in his brain has reached levels that are or will be soon, creating too much pressure on his brain as it grows. We are thankful that a shunt is even a possibility. We are thankful for modern medicine. We are still very thankful we were selected for prenatal and truly believe that it has given Grayden the chance he needed to grow and get stronger to prepare for this surgery. Prior to having the prenatal surgery we were given a 95 percent chance that he would need a shunt based on what the doctors saw on ultrasound prior to his birth. We had hoped with the prenatal that we could avoid this, but it was not meant to be. WE are still so thankful and we know that Grayden is a strong little fighter.

Please keep us in your thoughts as we struggle to prepare for Monday.

We could really use a wish right now, a wish right now (or two or three).

We love you to the moon and back Grayden!!

Back to Reality

Austin and I just returned from a much needed couples weekend away. We spent the weekend up north, just the two of us cross country skiing and relaxing. We both felt that it would be good to get away and spend some together time to focus on our relationship. With everything that has happened this past year we have not had much time to spend with just the two of us and it was so nice to have the chance to catch up with each other and to focus on one another. We had a great time and the weather was beautiful for skiing. A big thank you goes out to my mom and Jeff for taking such good care of the boys while we were gone!

As the weekend draws to an end however; we are faced with a big jolt back into reality tomorrow. Grayden has his monthly head ultrasound and neurosurgeon appointment. I am feeling very anxious as the time gets closer. I know that my worries will not change what I will be told tomorrow, but I still can't help but feel nervous. I dread the news that we may receive, but am also trying to think positive thoughts. Ahhhhh, it just feels impossible.

We also have four other appointments tomorrow; including an evaluation with a new Physical Therapist who practices Feldenkrais therapy. We are very excited to hear what she has to say and are excited for Grayden to start with this intervention. Thanks again to all of you who have supported us through Gearforgrayden.blogspot.com for helping us to fund this alternative therapy!! Your support is so appreciated. Grayden also has his four month check up as well as his in home PT appointment tomorrow. I figured if I had the day off, I should cram as much action as I could into one day. We are going to be very busy!!

Grayden continues to grow each and every day. I swear he is trying to catch up with his big brother. He is smiling and cooing a ton as well! He still needs to improve his head control when he is on his stomach, but he practices a lot and is getting stronger by the minute.

Zander entertains us daily and can always make us smile no matter how we are feeling. He is also learning every minute and we get such a kick out of watching those wheels spin. His language is coming along, even though Austin and I are probably the only ones who can really understand all he says. He is such a caring big brother and is constantly wanting to help us out with Grayden. I really have to keep my eye on him because he thinks he can lift Grayden up and he is constantly asking to hold him. He is also just beginning to get a little more jealous. Hopefully, it is a phase that will pass quickly.

So we are asking for positive thoughts tonight and tomorrow!! We have high hopes that Gray can continue to avoid the need for a shunt, but ask for strength if that is the road we have to travel.

Stay tuned...

Happy New Year!

I always knew we had some incredible people in our lives, but let me tell you we have some really truly amazing people in our lives. As the New Year approaches I am reflecting back on everything that has happened and changed in our lives. This year has been amazing and difficult all at the same time. Through it all we have been supported by our amazing friends and family. So many people have helped us in ways that we could never repay or thank enough. We have received some very generous donations towards Grayden's fund and we are truly blown away by the kindness. To those of you that have purchased hats and those of you who have donated THANK YOU! Those words just don't seem adequate. Also, I have to give a big THANK YOU to all of you that have helped us over the past year. To watching our boys (Zander and Cohen), to coming to Philly to help out, to restoring, painting, and rearranging, to organizing and packing, and just for helping us keep it all together, we could never say thanks enough. To all of our old friends and to our new friends that we have met along the way, we cherish each and every one of you. Although we would never choose this diagnosis for our little Gray, we surely have met some incredible people along the way that will hopefully become lifelong friends. We have also had the opportunity to spend some true quality time with people nearest and dearest to us. As I have said before our boys are the luckiest boys in the world to be surrounded and supported by such amazing grandparents, aunts, uncles, and friends.

Wow, so much has changed in the last 4 years since Austin and I were first saying our "I do's". We wish you all a very happy New Year and many great memories to come!!

Much Love and many thanks!!
Austin, Kelly, Zander, Grayden Goff
and Cohen too!

Happy Holidays to All!!

Christmas Lights Parade in downtown Zeeland

As is seems to go each year, the holidays are here before we know it, and we have had little time to prepare. Austin and I always seem to embark on a remodeling project right before Christmas, which leaves us little to no time to focus on decorating for the holidays. This year, Austin has decided to remodel our downstairs bathroom to make it more appealing to the buyers that will hopefully soon be buying our home. So once again in the Goff house we are left with only a small 2 foot tall tree and a few decorations. I had every intention of buying a big one this year, but unfortunately that did not happen. Maybe next year!

We have had a little time to enjoy the holiday season however. Zander and I recently went to the Christmas Lights parade in downton Zeeland with our good friends, The Shafers. We had a great time and we both decided it will have to be an annual tradition. We also had an opportunity to attend the West Michigan Spina Bifida Association's Annual Christmas party. We enjoyed the chance to meet other families in the community as well as chat with some of our new friends who we have met over the past year. Santa even made an appearance and both boys got a chance to sit on his lap and receive their first gifts of the season. Zander was not as thrilled this year to meet Santa, so I got to sit on his lap too!

We are looking forward to another great holiday season spending more time with our family and friends. Maybe someday I will get my act together and get our family a Christmas tree and send out those Christmas cards that I keep saying every year that I am going to do. And in the meantime I will continue spending time with my boys soaking up every minute of the two weeks I get to spend with them!!

Trying

So I sit here tonight staring at my beautiful baby boy trying to hold it together, trying not to panic, and trying not to jump ahead of myself. We have known that a shunt would be a possibility since we were initially given Grayden's diagnosis, and we have tried to mentally prepare ourselves for the time that we would be told he may need one. Honestly I don't think I will ever be ready or okay with it. Grayden had his monthly head ultra sound and neurosurgeon appointment today. His ventricles have enlarged and something called the resistive factor has also increased, both indicating that Grayden may be in need of a shunt in the very near future. The neurosurgeon is giving him one more month, and at the next appointment based on what he sees, he will decide if a shunt is necessary. I know that if Grayden needs a shunt, then he needs it, and it will save his life; however I am freaking out at the thought of him having to have one.

I sit here staring at my precious baby, wanting to protect him, wanting him to be free of all of this and sincerely hoping somehow we will avoid the need for a shunt.

Really in need of some positive thoughts today and for the next month.

Thank you for those of you who have ordered hats from me and my mom. We are looking forward to starting therapy with Grayden in the very near future!!
www.gearforgrayden.blogspot.com