My first foray into blogging was kind of a bust. It was supposed to be a chronicle of my journey as a follower of Christ and actually turned into a perfect illustration of my life. Great intentions that succumb to a hectic life, busy family, and not enough time. However, I would like to take another stab at this. Michael and I are expecting a set of boy/girl twins come December and last week we found out that our baby girl is sick. She has what the doctors have explained is a pretty severe heart defect the full extent to which they can’t even see just yet. So I would like to give this blogging thing another shot for a couple of reasons. One being to keep our family and friends updated as to what is going on. These next few months promise to be trying and filled with lots of information and changes and this just seems to be the easiest way to keep everybody up on what’s going on. Second of all, I feel like it is going to be very easy for me to get lost and lose faith in all of this. I need to have something that I can look back at so that I can remind myself that God is still here. He still loves us and He is still working in all of this. In the darkness I may just need a black and white reminder that He goes before us and works out the details. And while he has made no promises to heal our sweet child He does promise to still be here. Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; He will never leave you nor forsake you. Deuteronomy 3:16.
This past Thursday we went in for our routine 20 week anatomy scan. The plan being that we would get a good look at our two perfect babies and then discuss what our prenatal care would look like in the second half of the pregnancy. We had our ultrasound first and the tech started with baby girl, twin A. She took a few quick measurements which were perfect and moved on to baby boy, twin B. When she got to his heart she took a good fifteen minutes thoroughly examining it and labeling each part. Why didn’t she do this for baby girl? Why is she taking so long on his heart? What is wrong with it? She finished up with him and my thoughts were still racing. She looked at me and said, “ I need to be honest and tell you that I saved baby girl’s heart for last because something is not right and it is going to take me a little but longer to sort out exactly what is going on.” I asked her if it was bad and that’s when she said it. “No heart defect is ever good.” Heart defect. There it was. The world stopped spinning. Nursery planning and baby registries turned into what ifs. The life we planned faded away and we were now forced into a new reality…our baby girl is sick. We were basically told that her heart is completely flip-flopped but what that means and the extent of the damage we wont know until we have a fetal echo and meet with our team of pediatric cardiologists at MUSC. The doctor came in and explained what they saw and that our care would be transferred to a high-risk OB at MUSC. All the while the same question rang in my head, louder and louder. “Is she going to die?” Can I ask this? Should I ask this? Do I even want to know the answer? The answer terrified me but the what if’s and uncertainty seemed worse. As we were getting ready to leave it just came out, the dreaded question almost involuntarily spilled out of my mouth and immediately my heart stopped as I waited for her response. “We are hopeful. Her other organs look good and she appears healthy right now. We are more than likely looking at something that she will need surgery for after she is born.” There it was. Hope.
As we drove home, Michael and I bounced back and forth between a million different scenarios and emotions. We didn’t even really know what to think. He held my hand while I sobbed. I rationalized with him as he thought out loud. We were sorting out this new reality as best as we could still knowing that the unknowns far outweighed the knowns. We were told at the office that MUSC would be calling us that afternoon and to expect to be seen the following Tuesday. We went home and Michael went back to work and I went to waiting…..and googling. Good grief was there googling. I know, I know. You are not supposed to do that There is nothing worse than mixing a worried parent and google but I could not help myself! (Honestly, what parent could?) The afternoon came and went and we had yet to hear from MUSC but our OB said that it might be as late as the next morning so I was agitated but not surprised. After 5pm my phone rings and it is our OB. She goes on to say that the pediatric cardiologist is beyond booked so they would not be able to see us that Tuesday so the in-office specialist would see us on Monday and that we would see the pediatric cardiologist the following week. Then she said that they would also do an amniocentesis on Monday to rule out any chromosome defect. I was so confused. What chromosome defect? It is her heart not her chromosomes! Dr. Devine proceeds to tell me that when you have a structural defect like hers you have to begin thinking that the cause may be a chromosome abnormality and you need to rule out things like Down’s and Trisomy 18 before you start considering using heroic, life-saving measures. Heroic, life-saving measures. Once again the world stopped spinning and after we hung up the phone I began to really digest what she had said. What I heard was they wanted to do an amniocentesis to figure out if my child was worth saving. This is the child that I feel living inside me. The child for whom we have planned a life. The child that I dreamed of seeing being a sister and best friend to Ellie, our oldest daughter. The child that I have pictured walking down the aisle and holding a baby of her own one day. Our little girl. Was this child worth saving? Amniocentesis is not without risk for BOTH babies and that is the only answer you’ve got as to why we should do it?! Absolutely not. I would absolutely not put both babies at risk just so that don’t have to “waste” your medical resources. I know that is not what she meant but I just could not come up with any scenario in my head that made sense for us to do it. We were going to fight for baby girl no matter what. We went to our doctors appointment having decided that we would not do the amnio unless she could give us a better reason. A reason to do it that would medically benefit one or both babies. When we walked in to our appointment where we met with the ultrasound tech and the specialist from that office. We spoke with the doctor in depth about the amnio and what that meant. She basically said that her heart defect did not follow any pattern and that gave her great concern that it might be because it was the result of a chromosomal abnormality. She pushed for the amnio for a variety of reasons all of which still just weren’t “good enough.” I refuse to put both of the babies in jeopardy to quench either my or her thirst for information. Then she flew into possible scenarios. She mentioned that if say baby girl began to decompensate rapidly at 30 weeks or so we would need all of the information we could get when making a decision about whether or not to deliver both babies early. Boys tend to not do as well as girls when born prematurely and that could set him up for a lifetime of medical issues if delivered too soon. It was too much. The complexity of the issue, the idea that I could not make a decision without affecting both children proved to be too much to bear and I broke. I broke under the sheer gravity of the situation and the barrage of medical personnel watched as a melted in a puddle on the floor. No matter what decision I make I won’t know if it was the right or wrong one until something catastrophic happened. I know that we said that we would not have the amnio unless there was a medical benefit to one or both babies and she had shown us that there was but now it came down to trusting the decision that we made not knowing the outcome. It turned back into what if’s. We held on to the decision and rationale that we had prior to the appointment and decided to have the amnio. It was uncomfortable and scary and I still don’t know if I made the right decision. At this moment I live in constant fear that something will go wrong. Either my water will break or I will have contracted some type of infection from the procedure. All we have is hope and faith. Faith. I would like to say that after the amnio the doctor gave us good news and reassurance but all she gave us was a plethora of information that I could have gone a lifetime without. She began to ask us about termination. Termination. The thought angered me in a way that I have not ever felt before. Are you not supposed to save lives? Are you not supposed to be on my team? Are you not supposed to be fighting for my little girl? We left the appointment more heart broken than before as we just go home and wait. Wait for our appointment with MUSC. Wait for answers. Wait and see whether or not there will be any complications from the amnio. Wait. The next day we received a phone call from the fetal cardiology coordinator about our appointment. She said that our appointment was set for September 3rd and that we would meet with a team of cardiologists and OB’s and that they would do a fetal echo to determine exactly what we were working with as far as her heart was concerned. She told me that they were going to wait until then to see me because the amnio results should be back in. She then said something that while I’m sure insignificant to her restored my faith in the medical community. She said that the amnio results did not matter to them in regards to medical management for us. She said they are going to do whatever they can for baby girl regardless of the result. Hope.
So now we go back to waiting. Some days/moments are more difficult than others. I would like to say that this has brought renewed strength and intimacy with Christ but that comes and goes too. I am angry and heartbroken. I am terrified at the idea of a life without her. I have gone from being terrified about being a mother of four to being terrified that maybe I won’t get to be and that makes me angry. Michael asked on Saturday what time I wanted to go to church on Sunday and before I knew it I had responded with, “I don’t know. God is not really my friend right now.” Did I mean it? Maybe. Did it sting coming out? Yes! Even acknowledging that I was angry with God hurt. I was even angry that he let me be angry with Him. I wanted to feel Him. I wanted to feel His comforting arms. I wanted to feel relief from this weight that I carried and instead I felt nothing. I felt and sometimes still feel alone. It is days like this where I have to hang on to what I know with everything I have because what I feel can only lead to isolation. The heart is deceitful above all things and beyond cure. Who can understand it? Jeremiah 17:9. This is what I know. I know the truths of God’s word. I know that all things happen for His greater purpose. I know he has promised never to forsake me. I know that He has promised that out of pain comes grace. I know that when I lack the strength to even take the next breath that He breathes for me. I continue to pray that even in the pain, when it is too much for my heart to bear, that I am able to hold on to that truth. So while we wait…
But those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.
Isaiah 40:31
