1 Step Forward and 2 Steps Back

Sunday, April 19, 2009 - Now before anyone starts to panic because of the title - be reassured that Elle is doing fine (although she did have a tough breathing day). The blog title is more referring to me than is it to Elle. Lee and I walked into the NICU this afternoon around 2 and immediately hung up Shannon's painting for "The Adventures of Princess Elle and Ladybug Lucy" on Elle's "circus cage" crib. My parents had been with her for the late morning and early afternoon and said that Elle had been doing wonderfully. A little later on, we were told Elle might be well enough to be moved to the 15th floor. This is wonderful news! It means that the Cardiologist are pleased with her progress and she is one step closer to going home! Around 4:30pm, our normal day nurse, Estrella, had to leave to go and take care of an extremely sick baby in a different pod. Another nurse came over to be with us. This nurse had no idea how to suction Elle and has never been around her to know her tendencies. We had missed the 3:00pm suction because Estrella was going over Elle's chart with the new nurse. At 4:30pm, Elle's breathing was getting a little labored so we decided to suction her nose. I asked to do it since I have been watching and helping the nurses do it for the past two weeks. I tried to get the catheter into her left nostril and was only able to get down 6 cm until the catheter hit a blockage. I tried again and the same thing. This whole time, Elle is screaming and the nurse is trying to calm her down. I tried the right side with the catheter and it went down to the required 9cm - no problems. The nurse then sat Elle up and took the catheter away from me and proceeded to suction out her nose herself. She told me that I needed to be pulling the catheter up faster once I reached the required 9 cm. I just looked at her and was silently screaming at her. Not only way my baby in pain - and I am causing it - but this nurse who has never even seen my baby comes over and tells me how to do something that she has never done before. Elle's stints in her nose are a first for everyone in the NICU. None of the nurses have ever seen stints like what Dr. Edmonds put in - let alone cleaned them out with a tiny catheter. I was fuming, but let it pass. Then she asked if I wanted to hold Elle and try to calm her down. Of course I did. I held Elle for about 15 minutes trying to get her to calm down - she was going back and forth between calm and fussy. Of course I am in pain trying to get her to calm down but I can't. The nurse came over and told me that Elle should have calmed down by now - she took her from me and she and Lee put her back on the bed and proceeded to try to suction out her nose again. I just sat in the chair. The nurse looked over at me and asked me if I was ok. I just nodded but the tears were welling up. The past 4 weeks I have felt helpless. You can't help but to feel that way - especially when your baby is attached to so many tubes and wires. It's not like you can just pick them up and try to comfort them when they start crying. The feeling of helplessness is just something that you have to get over - but tonight I felt useless. Here I am trying to suction out Elle's nose and then trying to comfort her from the pain of the whole suction process and I have a nurse who steps in and thinks she can do a better job than I can. I felt helpless and useless. I lost it - I didn't say a word to anyone and just walked out. I had to escape. I went to the milk bank and went into one of the curtained off areas. I just sat there and cried. The worst part about it was that there was another mom in the area next to me crying too. I heard her crying and it made me cry even more. The whole time I was gone, Lee and the nurse were trying to suction out Elle's nose some more. I was typing as fast as I could to Lee to tell him to stop suctioning out Elle's nose. Every time the catheter goes down her nose - it irritates it causing swelling. I had already suctioned her once and here they were doing it over and over again. Poor baby just had enough. He finally let me know that they had stopped around the same time I finished in the milk bank. By chance, I had put a journal in my bag today to keep track of the amount of milk I am turning into the milk bank. It was a gift from Lee's grandmother and I had never really paid any attention to the cover of the journal - other than to notice that there is a cute picture of a shoe on it. Today I looked at it and three little words jumped off the cover of the journal and instantly brought me peace. There's a picture of a high heel on the front and under the picture are the words "walk in faith." Here I am sitting in the milk bank having a pity party for myself when I should be "walking in faith." I can't control Elle's reaction to the catheter anymore than I can control what the next hour may bring. I can't control the nurses actions anymore than I can control the weather! I took a deep breath and sat there soaking in everything that had just happened. By chance - I put that journal in my bag today. I've never written in it and quite frankly - I don't even know how it ended up on the kitchen counter this morning. I don't know what possessed me to start tracking how much milk I am turning in today and why I didn't start doing that 4 weeks ago. I do know that at the very time I needed a reminder of how I need to handle each hour of each day - I got it. I put myself back together and went back to be with Elle. I took her out of her crib and held her and tried to comfort her. She was still pretty angry - but I would be too if I had tubes up my nose that people kept suctioning out. The rest of the evening past as a blur. Finally at 7:00pm - the horrible nurse left and one of the wonderful night nurses came in. Elle was still being fussy and throwing hissy fits so Lee and I decided that she needed some medicine for the pain. The nurse gave her Tylenol. The whole afternoon, Elle's breathing was just off. She had been doing so well and after the suctioning she got - she wasn't breathing out of her nose at all. She was sucking in her bottom lip - a sure sign that she couldn't breathe out of her nose at all. We decided to suction her again at 9:00pm - before her feeding. Lee did it and was able to pass the catheter down to 9 cm on both sides - so the tubes aren't blocked - but Elle was still having difficulty breathing. It is so hard to sit there and watch her struggle. The neonatologist team came by and talked to Lee around 10:00pm. While it looks like Elle is having difficulty breathing, her stats are all good. They told him they would monitor her closely tonight - but she is showing no signs of being in distress. Laurie, our night nurse, was also reassuring. She has been with Elle before and knows her tendencies. We finally left around 10:45pm - after hearing both the doctors and Laurie say that they felt she was ok - she just has something in her nose or back of her throat that needs to work its way out. When we left, Laurie had fixed her so she was lying on her side and her breathing was much better. It made it slightly easier to leave. I am so worried about my little baby but I have to trust that she is fine. She has a wonderful team of nurses and doctors watching over her at all times and she is in the hands of a gracious and wonderful Lord. I have to have the patience and knowledge that my job as Elle's mom is to walk in my faith. Faith that the Lord has a wonderful plan for little Elle and sometimes my human eyes and heart can't grasp what is going on - but He knows. Today was an eye opening experience - The Lord sent me a reminder today that in order to get through this experience, I have to place all my trust and faith in him and he will see us through!