Monday, May 11, 2009

Post Mother's Day

This post is a day late because I didn't want to jinx myself in talking about going home until I knew for sure we were going home. And for those of you wondering, we are coming home tomorrow!!!! Gavin had blood/lab work, chest x-ray, and EKG this afternoon. We met with the nurse practitioner and Gavin's chest x-ray looked amazing! It looked better then it did at discharge. So the minimal fat diet seems to be working. Gavin's INR levels were low which has to do with the cumadin he is on, so they increased his dosage in hopes of it leveling out. We will have one day to re-coop then it's off to the city on Thursday for post-op check up with the doctors there. Please, please pray that Gavin's blood levels all stay in a good range and that he doesn't get anymore pleural effusions (fluid on the chest). Gavin has had two since surgery, they are very common for post Fontan kids but they always require re-hospitalization. So those are the main concerns for Gavin right now.

On to the sentimental post about Mother's Day. Yesterday was a great day, we took a trip to the beach to see the seals and had brunch with Dr. Peter's (Gavin's surgeon) wife and daughter. Dr. P left for Boston on Saturday for a conference. So we had a girls day!

...Stop here if you don't like to hear my "real, raw" emotions that I have wanted to share for a long time. A lot of people talk about how strong we are and ask how we can stay so positive... but that's not always the case. I am a real person, with real feelings and a real life changing experience.

Yesterday, as I was holding Gavin and looking out to the ocean I thought about the last 3 years of our life. It was enough to bring me to tears...

Starting when I found out at 22 weeks about our unborn sons condition. That same day we had to tell our family and watch them break down, I think that was the first time I had seen my dad shed some tears. Then we prayed and begged God to heal our son. The following weeks/months were filled with fear, anxiety, doubt, and worry. I had nightmares every single night...ask Adam or my mom and the entire church camp that my mom counseled that summer (later I found out that a group of the kids in the youth group petitioned to God on our behalf that night). I woke up every night sweating and crying. I still remember the morbid nightmares, I don't think I will ever forget them. I remember planning in my head my sons funeral. The flowers, the songs, where he would be buried. At the time I had only confessed that to another heart mom and she completely understood, she had been there. However, through the midst of this storm I was saved. On August 23, 2006, two months before giving birth to Gavin, my husband baptized me. Then we held each other and cried. I was baptized in middle school but felt I did it for the wrong reasons. Those next weeks came easier to me, God had given me a sense of peace. Fast forward to Gavin's birth day, October 13th, 2006 the room was filled with doctors and nurses. Then there was the moment he came out SCREAMING and full of color, not blue, limp and lifeless like they warned us he would be. Surprisingly that day I was the calmest/strongest I had been in the past 20 something weeks. Adam on the other hand lost it, I think he had built up emotions that just needed to be let out... and rightfully so. It's amazing how that has worked out, we always seem to balance each other out. Gavin was doing great, he had to be intubated but they believed it was because of the medicine they had to start him on before surgery. Then the night before surgery as I held our son for what we thought could have been the last time ever, Gavin quit breathing... and then my calmness turned back to fear and anxiety and helplessness. I cried as the nurse bagged him in my lap. Fortunately, no compressions were needed and Gavin was ok again. Then the time before surgery when Dr. Peter sat in a room with Adam and I and told us that there was a slim chance our son would survive the surgery. We then began the process of what would haunt us for years to come, signing consent forms, the forms that made us aware that our son could die. We kissed Gavin as they rolled him away in that tiny incubator with tubes and wires coming out every where. It took every thing in me to not pick him up and just run, run far away. Again came the moment where Adam and I held each other and cried, broke down with our real and raw emotions. Surgery took all day, felt more like a year. We were taken to our own private room where we could shut the door and try to "relax". There were more than 20 people there, it was always the joke with the staff about how our family and friends took up the entire waiting room. Our rather large group circled around the room and again prayed that God would protect and heal our son. That evening Dr. Peter came in and said there were issues with bleeding and that Gavin had to be re-cooled and put back on the bypass machine for the second time in surgery to see why he was bleeding. Gavin was critical and back in ICU. I honestly didn't know what to expect, I had seen pictures to try to "prepare" myself, but nothing prepared me for seeing my own son looking lifeless on a bed. I took two steps in and broke down, there he was naked with tubes coming out of him filling with blood. His chest was wide open and I could see his heart beating. He looked like a 10 month old baby he was so swollen. I stepped right back out of the room. It was to much, I think my post-par tum emotions were kicking in along with the emotions of a mother whose 5 day old son just had open heart surgery. Adam was strong and stayed by his bed, so thankful he was alive. Don't get me wrong, I was very thankful, that is just something I never want to experience again, and no one should. The weeks went on, Gavin coded one day while we were at lunch. Honestly, I am thankful I wasn't there because at that point I would have needed a tranquilizer if I was present. On November 7 th, 2006 we took our son home. With monitors and oxygen tanks in tow. We were quickly greeted that evening with a home health care nurse and the home health care equipment. I don't know what I was thinking when I thought we would come home to peace and quiet and get some rest. We still had the beeps and dings of the monitors, but it was comforting and reassuring to have it there. The next few months were hard, Gavin wouldn't eat, he would sweat and arch his back when we tried to feed him. He got really sick and had to be hospitalized He quit breathing in the parking garage of our pediatricians office, fortunately after screaming at him and flicking his foot he took a deep breath and gasped for air. I ran as fast as I could and the doctors quickly checked him over. Again, he was hospitalized. Then came surgery number two, February 5th, 2007. Another day of consent forms, waiting, worry and anxiety. Again it felt like we waited forever for surgery to end. Dr. Peter came in and said that it was rough and Gavin had a lot of scar tissue built up and his heart was stuck up under his breast bone. Dr. P actually cut into his shunt because it was so stuck Over time, Gavin became addicted to the narcotics and had to be put on methadone "legal heroin" to ween him off. He then starting having seizures and had a CT scan that showed he had a minor stroke either during or after surgery. We were re-assured that Gavin would come home and recover quickly with physical/speech therapy. Then on February 16th, 2007 we came home with a feeding tube and we were greeted by the therapists. Gavin progressed and was discharged from therapy at the end of 2008. For the next 2 years Gavin had several hospitalizations, tests and procedures. It was hard, but we made it through all the vomiting, bleeding, seizures, addictions, intestinal problems, etc. Which brings us to the present, and we don't need re-hash all the up's and down's with this surgery. I am just thankful and it's such a bitter sweet moment. I feel like things can go slower now, we can enjoy our son more. We don't have to "wish" for the next surgery date to get here and be over. We can somewhat relax, take it easy and watch what else God has in store for this little boy. I know that we are not out of the woods by any means and this is something that Gavin will have to deal with for the rest of his life. But I am still thankful, thankful God gave me Gavin, thankful for our circumstances, thankful for our blessings, just thankful. This Mother's Day had a special meaning... a meaning of thankfulness.

19 comments:

The Simmons Family said...

Beautifully written. So many of the same emotions lie inside of me and I have tears rolling down my face. We continue to pray for Gavin. I am so HAPPY that you may be going home. The Fontan is over. HORRAY!

I always dreaded the Fontan. Now I am dreading transplant instead.

Laura said...

OMG Faith. Isn't it amazing what we can go through and still live to tell about it. You guys have been through so much. I hope and pray that the rest of your life is much more peaceful. Gavin is such a lucky little boy to have such wonderful Godly parents in you and Adam. And of course you are so lucky to have Gavin. God bless you all ad have a safe and uneventful tip home tomorrow!

Davis Family said...

God bless you!!

Katie said...

So glad you shared this. I love reading other heart mom's perspectives...we all share those same feelings and that's a comfort to know you're not the only one.

Congratulations on the good post-op report and HOME!!!

Happy Mother's Day and way to go Gavin!

Anonymous said...

This is our last night in San Diego and I want you to know how proud I am of you and how much respect I have for you! You are an amazing woman and mom. Adam and you make a great team and it was humbling to watch you both in action these last few weeks. Thank you for allowing me to be a part of your lives. I love you like a daughter but also consider you a friend! Now...let's enjoy summer and the pool but more than anything let's enjoy Gavin!!!
I love you,
"Z"

The Pink Owl said...

Thank you for sharing your story. It is truly amazing how God has blessed you and your family. I check your blog everyday to check on Gavin, and I pray for ya'll often even though we've never met. You *are* an inspiration even while being a real person, with real emotions! Thank you, you have helped me to put a lot of things I take for granted into the proper prespective. I continue to pray for sweet Gavin and wish for a lifetime of health and happiness for him and your family!

Suth-ern Mama said...

Thank you for sharing your "heart mother's story", Faith! It is so good to see God's faithfulness and goodness through each step in the journey with Gavin. Happy Belated Mother's Day! I am so glad you can celebrate and be thankful!

Megan said...

Faith,
I read your blog every time you update, and have followed it since Gavin's birth, but even through reading it everyday I never get the 'full picture' of what life is like for you. I knew you were strong, but after reading this I see just how strong you really are! Thank you for sharing this, and please continue to share your journey through your blog. I love keeping up with you! So glad you are headed back home!!!!

Stacey Eby said...

What a great thing to read in the morning. I am always amazed by what some of my friend have been through! While we had a lot to deal with during Grant's problems, it is nothing compared to what you have done. It is so wonderful to hear the whole story, and know that everyone has those same feelings. Gavin is so very lucky to have parents as wonderful as you and Adam. Praying for everything to continue to look good! Wishing you a safe (and UNEVENTFUL) trip home :)

Much love and hugs!

Anonymous said...

Faith, this is Maudie. You are one most beautiful Christian woman. I love how you can let us know about what you are dealing with. The past three years, through your blog, I have cried with you, prayed with you, rejoiced with you and learned to love you and your family even more than I did before. What a Christ like spirit you have. So willing to give of yourself so other people can realize they are not alone in some of their thoughts and what they may be going through. I am so glad our paths have crossed in this life, because you and Adam are such an inspiration to all who have had the chance to know you. We have loved your family for a long time, but never as much as we do now. We will continue to pray for all of you. Love Jimmie and Maudie

Cari Smith said...

Faith, Thanks for sharing such an amazing story. So glad you're on your way home and now this is another chapter that can be put behind you. I will continue to pray for Gavin.

Anonymous said...

Faith...Happy "Late" Mother's Day! Your post was beautiful! And I truly "get it"....so glad that we have other heart moms that can relate to some of the same emotions. Funny how I spent Mother's Day in the hospital post fontan also! That Mother's Day was so special to me...you said it best....just a day full of THANKFULNESS!

The Fontan is over....the worry of the surgery is over....NOW, Great post-op report and summer fun is on the way!!!!! So glad that this part of your journey can be put behind you. You are so brave for sharing with others.

Gavin...you are one brave little boy! We wish you the best summer ever! Hope you are feeling better soon!

Love, MG and the Family

And LOTS and LOTS of heart hugs from your buddy, "D"!

Alyson said...

I just wanted to let you know that we were thinking of you all!

I pray that little Gavin is running through the sprinkler soon.....Summer is FAST approaching!!!

<3

JunieMckinney said...

Your family is amazing. Gavin is so strong and he gets that from you and Adam. Faith, even though you don't always feel strong, you are!
Junie

Anonymous said...

Words cannot describe how I feel for Gavin and you all. Thank you for sharing your heart because it is encouraging that if you can make it through this then I should never complain about my life. Patrick and I pray for you all daily. I cannot wait to see him!
I am waiting for kiki to text me when you all land :o)!

love always,
Kali

Kara said...

Faith--
Thanks for giving us a little glimpse into your world. I think sometimes its harder to let people in to the raw feelings. It is amazing to read through what the past 2 1/2 years have been like for you guys. I know that none of it has been easy and you have come through it, though beaten up at times, with so much strength. You and Adam (and Gavin of course) have such a story of God's goodness and grace.
I am so excited that you guys are on your way back to T-town! Luv u girl!

Kelli said...

Wow. Thank you for sharing that with us.

Jenny said...

Faith,

I always knew you were a very special girl. Your name fits you perfect. Without you and your family's faith, I don't know how you would have gotten to where you are today. I will continue to keep you all in my prayers.

Love,
Jenny (Kara's mom)

Anonymous said...

WOW! Thru many tears I was able to read your story. The entire time I kept hearing in my spirit that when we are weak He is strong. I always knew that you were relying completely on the strength of God and it's evident. What a tremendous testimony. Tricia