This has been a hard week for me. As we get closer to our next cardiologist appointment and meeting our (new) Maternal Fetal Medicine specialist, my emotions are pretty much all over the map. There’s a lot of stress and a lot of emotional struggles at work that just make for a pretty overwhelming situation.
I’m struggling with dealing with all of the emotions involving Savannah this week. I love my sweet girl, and I can’t wait to meet her. Her heart problems don’t in any way change how much I love her or how very excited I am to meet her. It does make me incredibly nervous, though, about what is going to happen once she arrives. It’s a very tough pull of emotions….being so excited for her to get here and dreading all the unknowns that will happen once she’s born. She’s so strong right now and I feel her moving often, and right now, I know she’s safe and happy and growing well. After she’s born, I relinquish the ability I have to keep being her support system. I become a bystander and can do nothing but pray for my baby girl and her health. It’s frightening and one of the hardest things I’ve ever had to face. I find myself telling the Lord quite often that He’s going to have to handle more of this because some days I feel like I’m falling apart.
I’m also feeling stress about selecting her medical care. This is so far from my area of expertise. I don’t understand everything that’s going on, I don’t know what questions to ask, and I just don’t know what I’m supposed to do for Savannah’s best interests. I’m trying to do my very best in working with insurance, with our current doctors, and with other institutions to seek second opinions; but it seems that no matter what I do, there’s someone who speaks against it. From posting on message boards and groups with other parents of heart babies, I’ve been told a million things. I’ve had parents tell me that Riley will be fantastic and will be able to treat her just fine. I’ve had others tell me they had a horrible experience with Riley and to seek out another place for treatment. I’ve had people tell me I’m not doing the right things and give me laundry lists of things to ask for and do. I’ve had people tell me not to trust our current doctors, or any doctors. It’s overwhelming and upsetting. There is no manual for this, no guidebook on how to get the very best for your child. All I can do is pray for wisdom in a situation where I feel like I have none.
Our financial situation has also been weighing heavily on my heart. As most of you know, I own my own business making personalized and metalwork jewelry. My income pays part of our household bills. When Savannah comes, I’ll be staying with her until she’s able to come home. This means I’m not able to work or bring in any money for my “part” of our bills and it also means I’ll not be able to sell for the Christmas rush, which usually makes up about 40% of my businesses yearly income. In addition to that, we’ll have the added expenses of travel, lodging, and food for me, as well as whatever is not covered by our insurance for Savannah’s medical care. I am praying that the Lord will bless my business in the next few months so that I can store away enough money to pay for all those expenses and not be stressed and burdened by that situation while I need to be focusing on Savannah. I’ve also started releasing a line of CHD (Congenital Heart Defect) awareness jewelry that is specifically designed to help with expenses related to Savannah’s care. It’s difficult to struggle between making the money you need to care for your child and being there for your child through every bit of their medical journey. It hurts my heart to think about all of it.
I feel like the only “right” thing I know how to do is fall on my knees and pray for Savannah. I can’t handle this on my own, or even with all the earthly support in the world, and that is the only place I know to turn. And sometimes, all I can do is cry and hope the Lord knows what’s on my heart. I am trying. I am doing the best I can given all the complex emotions that are swirling through me. Despite all that, I feel so inadequate to be in this situation.
I still pray, multiple times daily, for Savannah’s heart to be whole and healed. That, beyond anything else, is what I ask for and desire the most. Here is part of a post I made on her facebook group last week:
We would appreciate everyone praying and claiming Savannah’s healing while we draw closer our next echo on the 12th.
Matthew 17:20 says: ”Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and IT WILL MOVE. Nothing will be impossible for you.”
Surely if we can move mountains by faith, moving a few vessels, fixing a few valves, and developing the rest of a heart chamber should be no problem! God is mighty!
I honestly don’t know what else to do but pray and tell those vessels, valves, and chambers to move and develop in Jesus’ Name. Ryan and I would ask any and every member of the Body of Christ to join us in those prayers. Savannah’s heart is no bigger than the end of your pointer finger (top knuckle to the end of your finger) right now, and when we can push the emotions aside, we know that God is much much bigger than Savannah’s sweet little heart. Please pray, in ernest, for our echo and appointment on Thursday. Pray for wonderful news, for healing, and for wisdom as we deal with all this.
For those interested in Savannah’s Facebook group:
For those interested in CHD Awareness jewelry: