Time Marches On: Two Months Post-Op

It's been a while since my last post and I know you're all probably wondering where we've been and how Jack's doing at home. In our case... No news is definitely good news. We've had a really calm few weeks. I can't even believe that in three days it will be two months since surgery. Time marches on. 


Jack has finally reached the point of full recovery. His scar healed up so much better than I could have imagined. I really love it. Its his badge of war and he will wear it proudly. On June 21, we had a visit to clinic and Jack's cardiologist told us that we could come off of oxygen. He had us continue to monitor Jack's sats from home and he did great. Sats didn't change at all. That was a BIG day for us. We celebrated with quite a few tears...mostly mine. At the six week mark we started being able to pick him up under his arms again which was kind of the last milestone we were trying to reach. We were extra cautious at first but now he's back to being thrown into the air like every other little boy. It makes him giggle which makes my heart smile. He's back up to six ounces of breast milk. He's actually eating so much that I can hardly keep up. But this heart mommy knows that this is not a bad problem to have. He is all smiles and giggles these days. He loves his feet so much and he can almost sit up by himself. He reaches for everything and chews on anything he can get into his little mouth. His two teeth are adorable and he drools and chews enough to make me believe that we might see a few more teeth pretty soon. He has absolutely no developmental delays. For the most part, he's just normal perfect. 




We went to clinic yesterday where Jack had an ECHO and then we talked with his cardiologist. He told us that Jack's heart looks "pristine" which was beyond amazing to hear. He told us that right now we are going to focus on getting Jack off of two of his meds. We will be going down on his doses each week and we'll continue to monitor his saturations with the pulse ox we have here at home. We don't go back to clinic for TWO WHOLE MONTHS which will be by far the longest we've been without a visit to UAB or an ECHO. We could not have had a better report and we are SO thankful that God has seen fit to provide complete healing for our sweet boy. 

We will visit Jack's pediatrician this coming Tuesday for his six month check up and shots. We will also be working with him on getting Jack started on cereal and baby food soon. He wanted us to wait on this step with Jack because he needed as much BM as possible right now because his immune system took a major hit when he got sick in the hospital and then had to be on so many antibiotics. I've been having a really hard time keeping up with him lately though and have had to borrow from my frozen supply. Thank goodness I saved up a stock pile a while back when he wasn't taking as much as I was producing. I am running out now though and we need to start talking about adding in some cereal and then baby food so that he won't need as much BM. Formula is still not an option for me and I truly hope we never have to do formula. I have absolutely nothing against formula. Its just that we tried adding some formula to his bottles a few weeks ago when our supply and demand problem began and it made him very sick. It was awful and I don't want to have to do that again. Plus I know that with him having a less-than-perfect immune system, its just better for him to continue to get all of the nutrients and vitamins that he gets from BM. Please pray for him though as we begin to attempt this transition because we have tried a bit of cereal a few times and it made him sick. I know it takes some getting used to with all babies and I'm sure we'll get there eventually. 


Two days ago we celebrated Jack's six month birthday. I can NOT believe that six months has already passed since the day that I held my sweet boy for the first time. This past six months have been the most amazing and most challenging months of my life. I have learned more about myself, my marriage, my family, my community, and my God than I have in my entire life. And let me tell you friends, they are all GOOD. There were moments during each different hospital stay, from the time spent in the RNICU when Jack was born to the time spent in the CICU after surgery where I felt like time was standing still. I longed for the day when I could look over at my son and know that surgery was passed and he was ok. To see him playing and laughing. To not look at him in fear of what was ahead. I told my sister today that for Jack's whole short little life so far, there hasn't been a day that has passed that I didn't carry the weight of the fear of losing him to this disease. My fear was crippling and overwhelming. But today I can truly say that I am not afraid. We are finally passed the hardest step. Yes, Jack still has one more surgery to go and I know that it will be every bit as difficult for us to face when the time comes. But I am choosing not to focus on that right now. I am going to live in this moment and celebrate what God has done, knowing that He will certainly do it again next time around. Because I know in my heart that God's plan for Jack goes far beyond a few short months or years. His plan for Jack is bigger than defeating heart disease, and I have vowed to do my part to raise him to be the extraordinary person that he was created to be so that God can continue to use his life in an extraordinary way for many, many wonderful years to come.


  I'm so thankful for every single prayer that has been laid before the feet of our almighty God on behalf of my precious son and my little family. My heart is overwhelmed at the amount of grace that has been poured out over my life and the lives of my husband and son. God is so merciful and so good. His love is overwhelming and unfathomable. I pray that He receives every ounce of glory that comes from our story. And when you say your prayers tonight, you thank him for us too. Thank him for saving our boy. Thank him for saving us all. 

 ^"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us." Ephesians 3:20