The day we brought Charlotte home from the hospital was one of the craziest days of our lives. We had planned on staying up in LA for about 6 weeks and instead found ourselves loading our little miracle into her car seat after just 2 weeks. I know we shouldn’t have been surprised at the speed of her recovery but Jon and I found ourselves looking at each other like dears in head lights not knowing what to make of all this. Those 2 weeks felt like years and we both felt a sense of disbelief that we were actually taking her home.
I will never forget walking through the front door of our apartment carrying our sleeping Charlotte in her car seat. We placed the car seat softly in the middle of our living room and waited for her to wake up. Take note that we had just been able to hold her for the first time just days before so the thought of somehow holding her wrong and causing her any pain was paralyzing to me. Now for the real stuff; being parents!
The first few months were tough to say the least. Charlotte was not an easy going, quiet baby. She would scream and scream and scream for hours and hours every day. We would touch her wrong and she would scream, we would look at her wrong and she would scream. Jon and I would take turns just walking her around trying to sooth her. We were warned that a few of the heart meds she was given in the hospital might stay in her system for a while, making her uncomfortable. We then discovered she had acid reflux which was contributing to the hours of nonstop crying. Our pediatrician put her on medication for it, which we hated, so we ended up taking her to a chiropractor. Much to our surprise she was completely healed of her acid reflux within weeks of going to the chiropractor and is now completely off all medication. Praise the Lord!!
That first few months being home were the hardest months I have ever gone through. I felt as though I had been through a war and was sent home and told, “OK! Now live normal.” Normal? I had no sense of “normal” and felt completely lost in how I was supposed to feel after that whole experience. Everyday turned into survival for me. I would look at Charlotte and lose it. Her crying felt like someone was ripping my heart out of my chest. I felt helpless not being able to sooth her. I would walk around our apartment crying with her for hours. Thank God for Jon. He stayed so strong for his girls through the whole experience. I wasn’t able to be alone with her. The fear of something going wrong and somehow it being my fault made it hard for Jon to get any alone time.
I would compare her to other babies who were born around the same time as her. They would just hang out in their mother’s arms and seem so happy and content. Some would even just fall asleep while being fed. That was totally foreign to me. I wasn’t even able to take Charlotte to the grocery store or out to run errands because if she woke up the screaming would start and who knew when it would be over. We became prisoners in our apartment. I didn’t want anyone over because the idea of having to entertain someone and hold a conversation while feeling extreme anxiety with Charlotte didn’t sound fun at all. There were many restrictions on the ways we were able to hold her since her sternum was still healing. This made it hard for me to allow anyone to hold her. So I figured if no one came over and I didn’t take her anywhere she would be safe. I know now that this wasn’t healthy. I started living a very isolated and lonely life. I didn’t feel like anyone understood or could relate to what we were going through. These were the lies I was living with every day. I had to fight and pray for my freedom from these thoughts that were disabling me from enjoying being a mother. I ended up seeking help to sort out my emotions. Thank God for the people who helped me navigate through that confusing and extremely emotional time. I suffered some PTSD and was able, with help, to recognize the lies and irrational thoughts that were floating around in my mind.
Every day I started off with a personal pep talk. “You can do this! You can get through this day. Lord give me strength.” Then, we woke up one morning and it was different. I will never forget laying Charlotte down on her play mat and after a few minutes she looked content. She wasn’t crying! Noon came and Jon said in utter disbelief, “She hasn’t cried yet.” There had yet to be a day where she hadn’t put in at least a few hours of screaming before noon. Every day since then has gotten better and better. We are now realizing how thick the tension and stress was in our apartment, our marriage and our lives in general. We are also recognizing the endless amounts of love God poured out over us through the hardest times. He has allowed us to curl up in His lap and find comfort whenever we need it. I have been able to find peace in the promise of His sovereignty and control. The reality that my boat could flip over and sink in the storm and I could die or Charlotte could die or Jon could die doesn’t scare me anymore. I know that Jesus will be right there in the boat with me. No matter what happens.
This last month has been amazing! Jon went back to work and I’ve been taking care of Charlotte. I have come to terms that Charlotte will never be like “other babies”. She is temperamental, sensitive and loves being on a predictable schedule. She is the perfect baby for us. Charlotte was made for Jon and I and I feel extremely privileged to call her mine. She’s mine! All mine! Forever! She takes my breath away! She’s perfect!
Charlotte is now 5 months old and sleeps through the night. She wakes up in the morning happy as a clam ready to experience a new day in this world. She has made the perfect little schedule for herself with nap times and feedings. I am now able to take her places! She loves being out and about, people watching. The pride I feel as a mother walking around with my baby, MY PERFECT BABY, is something I have never experienced. From time to time I will pause to look her and remember that she would have had only 7 days to live without her surgery. But she was born in a time and a place where she could be given life. She is meant to be here for something bigger than we could have ever hoped for. Just being alive is a testimony of how incredibly loved she is by God. I pray that Charlotte walks with the truth and knowledge everyday knowing she is a miracle. We all should. I want her to own her scars and show them off as blessings. As her mother, I pray she lives without fear and with the knowledge that she is able to accomplish whatever her little heart desires. I will never stop rejoicing over her and thanking God daily for her life.
We see the pediatric cardiologist often getting echo’s on Charlottes heart and check to make sure everything is looking good. So far all the ECHO’s have come back positive. The only concern they have had is that her pulmonary artery is a little narrow, but not narrowing, meaning it’s not getting smaller. This is causing a bit of a heart murmur. They say that it is unusual NOT to see this, so they are not concerned, just closely watching to make sure it doesn’t get any narrower. I try not to focus too much of the 40% chance of having to go back in for more heart surgeries. The thought of that paralyzes me so I can’t go there. I am aware that that is an option but I walk in faith that no matter what, God will be holding our hands and carrying our sweet baby girl through the whole process.
Thank you all who have been alongside us on this journey. All your support, love and prayers have been our light and our hope. We love you all! I plan on updating the blog and turning into more into of a journal through our life with little Charlie Bear. She sure keeps us up on our feet.
