June 10, 2011 (Day 22) Saddle up Y’all

Yesterday the theme was “go time” and today God gave me the words, “saddle up”. I love that God is giving me common and practical themes for my days (not to mention that He is showing me His sense of humor.) He spoke to me this morning that you can have all the momentum in the world but you have to “saddle up and get on the horse to get moving.” Don’t stand still or one of my favorites,  "Idle time is Satan’s playground." He spoke to me, “Keep HOPE alive, keep praying, keep fighting, and keep moving.”

Our doctor called this morning to update us with news after reviewing our scans for a few hours with another cardiologist. They believe that Jackson’s heart condition referred to as Congenitally Corrected Transposition of the Great Arteries has actually corrected itself into a fully functioning heart. However, he has several other underlying issues that makes this very complex, but that news in itself gives us HOPE. He will still need open heart surgery, a pacemaker, and several surgeries to repair his heart, but we are getting closer to pinpointing his actual needs immediately after birth. “This is doable, this is possible, this is fixable.” I keep telling myself over and over, “God, you can do this,”

We are beginning to see people reach out to us that we never would have expected and strangers receiving our blog information. We are seeing God move in ways that we have never experienced. All this due to what the world may call “a defective heart.” We choose to call it Jackson’s special heart. For God knew exactly what He was doing when He formed his heart and only God knows in what ways his special heart will touch the lives of those around him.

For now, we stand in the HOPE that is in Jesus, for He is able to do so much more beyond our wildest dreams. But, we have to choose to move according to His will. So today for Jackson, “I will saddle up and get on the horse. It’s time to move." And while I am at it, I may just even say y’all once or twice! 

Thanksgiving 2010- Ava riding my parents horse Buttons along with Chris (my husband) and my parents (Jeff & Joan)

June 9, 2011 (Day 21) Get your gloves on, let’s go God!

 Get your fighting gloves on, it’s go time…. We’re back in business! I have had my share of some off days where it seemed as if nothing would go right and I felt so incredibly lonely and afraid. I entered into my angry phase and cried out to God that He would hold me close. He answered me, carried me, and gave me strength to keep going.

Yesterday I felt completely overwhelmed with some clerical errors dealing with our house and the growing list of things on my list. Oh how I wish I could go back to the days where laundry was the worst thing on my list! I had an appointment to go in and give a blood sample and I was terrified. The tests are looking for certain antibodies in my blood that could have contributed to the congenital heart block that Jackson has or if the heart block is caused by his other fatal heart conditions (most likely). I kept thinking, “what if this test comes back positive?” This would mean that not only would I have a certain genetic condition, but it’s possible it could have been carried to Ava. The chances of this are extremely rare, but you have to wonder after everything that we are going through.  But, I did it! I got through the appointment without tears and called my mom in for backup for today. I knew that there were so many phone calls and so much to do that I would need the extra help. So while I am here calling, scheduling, and researching Ava is floating around the pool with her Grandma having the time of her life! Thank you Lord for family!

I received a call from the Texas Children’s Hospital  (ranked #4 in The US for Pediatric Cardiac surgery) this morning after our Perinatal specialist put in a referral for us and they found an opening next Friday, June 17^th at 9am for a full scan, consultation, and tour of the facility. I was floored by the fact that we could get in so quickly with such a top notch specialist. It was a huge sense of relief after sitting here the last couple of weeks wondering what comes next. We had already decided that Houston was the next step, but there are so many details that go along with beginning the transition of care to a city away from home.

After I got off the phone, I was re-energized. I powered through paying bills, scheduling other appointments, and connected with my new OB. I laid down for about an hour and had one of my best naps since we found out. Sleep is something we haven’t been doing well around our house for the past several weeks and it’s beginning to show. I woke up with a renewed sense of strength and a fighting spirit. Literally my first waking thought was, “Ok, God, let’s get it done. You & me, it’s go time!”

My fighting spirit as a mother is back and I’m ready. After all, I still feel a mighty strong boy inside of me who is putting up the fight every day. Each day his heart is functioning at half the normal speed and circulating blood without oxygen through his body. With each new kick (and they are getting stronger) I am reminded that there is no time to wait, to linger, to question why, or to give up. Our doctors only know science, but we know a mighty God!!!

Watch out Houston, here we come! Fighting gloves ready, a sovereign God, and a whole team of people storming the gates of heaven for one little boy’s special heart!