Have you ever had one of those weeks that was so difficult you aren’t sure how you survived? I can tell you, the only way that I survived this past week here in Saint Louis was God! Last week my sister and daughter came to visit me, I was thrilled to have them here and be able to enjoy time with 18 month old while my sister spent some special much needed time with Miss Annabelle. Saturday morning, Madison and I went to the park beside the hospital where we met some nice little boys who were playing. We started swinging and before I knew it Madison was fast asleep. I received a text from my sister Renee who was planning to hold Annabelle for the first time in over two months, she said Annabelle was having a really hard time getting settled. As mentioned in her last blog, we had been working on her sedation plan to keep her comfortable as she was growing and becoming more tolerable to her current medicines. Before long, I received another text, “You better get up here”. I quickly lifted Madison out of the swing and into her stroller before she even realized what was going on. I got her in the car and hurried over to the hospital. Renee met me in the circle in front of the hospital where she took Madison and I ran upstairs to be with Annabelle. When I got to her room, I was already in tears not knowing what I was walking into. One of the nurse practitioners greeted me outside of her room and told me that her right lung collapsed and they were going to have to put in a chest tube at the bedside. They had paged surgery, but there wasn’t enough time to wait for their response. I made my way across the hall to the conference room while they completed the procedure. I can’t speak highly enough about her nurses and doctors that have cared for her…God has put the right people in the right place for such a time as this. After the chest tube was in, I was able to see my sweet Annabelle. She was laying on her small bed again so still. I was overwhelmed by all that had happened in such a short period of time. The doctor came and spoke to me to make sure I understood everything that had happened and what measures they had to take to make sure she was comfortable. She was placed on a paralytic (this wasn’t the first time)so that she wouldn’t move around and cause additional pain from the procedure. Her food intake was stopped and she was put on fluids because when your body is on a paralytic, you aren’t able to digest your food properly…it slows everything down. After speaking with the doctor, I felt good about how she was doing but still anxious in knowing that things are getting worse for Annabelle and feeling that we have to get Lungs soon! As if this scare wasn’t enough, at 4am on Sunday (not even 24 hours later) I received a call from the nurse practitioner “Annabelle’s right lung has collapsed again”. My heart sank! How could this be happening again? Doesn’t God see that she needs new lungs right away? I can’t tell you all of the emotions that were going through my mind. I rushed to the hospital, calling my husband and my mother on the way. Thank God my sister was in town with me to watch Madison. When I arrived as I walked up to her room there was a crowd of nurses and doctors standing in and outside of her room waiting to be told what to do. The same doctor that had placed her 1st chest tube in on Saturday was there again on Sunday adding another. This time they went with a larger chest tube. On Monday, the transplant surgeon came by to talk with me and to see how Annabelle was doing after her two procedures over the weekend. He told me up until now, she has been doing great! In fact, he was surprised that she hadn’t needed a chest tube before now. She was really beating the odds that were stacked against her. He told me that the chest tubes will be long term, most babies that receive chest tubes will have them for a small amount of time and have them removed. However Annabelle has bad lungs and due to the progress of her diseased lungs, he doesn’t see the chest tubes coming out anytime soon. He explained to me that their goal is to keep her comfortable and stable until we get the call that she’s getting new lungs.
Tuesday, the medical team decided to give her a tiny bit of food 1 ounce every 8 hours just to get her tummy moving. They also lifted the paralytic that afternoon which was a nerve racking experience when you’re praying that she remains comfortable when she realizes that she has two new accessories that she received during the time period she was asleep. Annabelle work up with Grace, expressed very well when she felt discomfort and slept a lot more on Tuesday. When I arrived at the hospital on Wednesday morning, Annabelle was bright eyed and beautiful. She was relaxed, comfortable and AWAKE! I was overwhelmed with emotion when I saw her, it was as if she had been just waiting for me to arrive and great me with those big beautiful eyes. I quickly washed up, and made it over to her bedside. When I looked into her eyes, I was so overjoyed I started crying…but I wasn’t the only one. She was tearful too. It touched my heart so much that it appeared that she missed seeing me over the course of the last 5 days as much as I had missed her. God is so good! The way He allows us to have these special moments, that just for a few seconds we look past our circumstance and see a glimpse of what will be in our future. A future filled with beautiful memories outside of a hospital, away from medicine pumps, monitors, and wires. I’m anxiously waiting for that day! The rest of the week has been a little intense as we’ve watched Annabelle’s oxygen requirements steadily remain at 95-100 the majority of the week. I keep praying with Annabelle, encouraging her and myself that God has a bigger plan. A plan that doesn’t always involve this environment and while we don’t know exactly what that looks like we are looking forward to it. Please keep us in your prayers. Specifically for strength, stability, and that precious gift of life.