A New Day Has Come
I started to write this note on Monday night as I sat at Macy Jane's bedside, but mommy duties took over and I decided to write when nothing was going on. I'm not sure if you are familiar with the Celine Dion song below, but all day Monday this song kept popping in to my head. I was waiting for so longFor a miracle to comeEveryone told me to be strongHold on and don't shed a tearThrough the darkness and good timesI knew I'd make it throughAnd the world thought I'd had it allBut I was waiting for youHush now I see a light in the skyOh it's almost blinding meI can't believe I've been touched by an angel with loveLet the rain come down and wash away my tearsLet it fill my soul and drown my fearsLet it shatter the walls for a new sunA new day has comeWhen it was dark now there's lightWhere there was pain now's there's joyWhere there was weakness I found my strengthAll in the eyes of a boy (change to girl :) Hush now I see a light in your eyesAll in the eyes of a boy (girl)I can't believe I've been touched by an angel with love Hush nowI cannot begin to describe to you the feelings that I had and still have since Monday. For those of you that may not have gotten the message from me or through the grapevine I will update you!! I received a call over a week ago from MJ's cardiologist. Apparently, the cardiology group at LeBonheur met on Wednesday and discussed Macy Jane's history/future/surgery. The new surgeon in town advised the group that a heart cath would be more beneficial for Macy Jane and would buy her more time so that she could be older, bigger, and stronger for her next surgery. I got the call to be at LeBonheur at 0630 this past Monday morning. To say that I was shocked would be an understatement. We were told back in July/August that a heart cath to place a stent in the conduit would not work and that open heart surgery was our only option and it needed to be done before flu season got in full swing. For the past few weeks, I had been trying to prepare myself as much as I could for all of the possibilities and outcomes of the surgery. I was ready. My bags were packed to stay at the hospital for weeks, if that is what I had to do for my little girl. The days before her procedure, I had such a peaceful feeling inside of me that I cannot describe. Most people have asked me how it is that I have and can handle all of the events of the past 2 years. Without a doubt, it is my faith in Christ that has brought me through each and every situation. I know that He is the one that comforts me and calms me down when nothing else can. Yes, handing my child over to someone and knowing that that could be the last time that I see her alive is very hard. On the other hand, I know that if she does not return to my arms after the procedure, she has been taken to the arms of Jesus, and His arms are much better than mine. On Monday, we finally got the call around 4 that the cath was finished. Macy Jane would be going to the ICU on the ventilator with a large IV in her leg. The doctor would talk with us later because he was at Macy Jane's bedside. Immediately, I began to think that the cath was not successful and that she would be going to the OR on Tuesday as originally planned. Dr. Lutterman came and found us in the waiting room and told us to come to her bedside for a chat. I was shocked when I walked in her room. There was my sweet baby laying in her crib...with no breathing tube down her throat, sucking on her pacifier, waving when she saw me, and crying if the nurse stopped patting MJs butt (that is classic Macy Jane....wanting to have her butt patted when she doesn't feel 100%) Dr. Lutterman was gracious enough to sit down with us and show us the films of MJs heart cath. It wasn't until about half way through the meeting that he finally told us that the cath was more successful than they thought it would be and that surgery had been cancelled, and we would be going home in the am! All I could do was thank God that He had His hand of protection on Macy Jane's life once again and for sparing her another surgery so close to the others. During the cath, they were able to place a Gortex covered stent in her conduit and open it to its original size, balloon some narrowed areas of her pulmonary arteries, and repair a psuedo-aneurysm in the right ventricle (not something that we knew was there until this heart cath). We were chatting with the doc about how noone gave us hope for Macy Jane in the beginning. Some thought we should take her home to pass, while others thought we should at least give her a chance at life. I carried her for 38 weeks and 5 days. Out of those weeks, I knew about MJ having complications the last 19 weeks. If I didn't want to give her a chance at life, I would have aborted her when we received the amniocentesis report. Like I said earlier, God chose Macy Jane specifically for me and who was I to decide that she didn't deserve life. Dr. Lutterman showed us the heart cath images from Mjs first cath in May 2007 compared to today. It was completely unbelieveable to me to see where she has come from in the past 16 months! You cannot tell me that there isn't a God that performs miracles. I am priviledged to be the mommy of a miracle every day and I would not trade my daughter for all of the "perfect" little girls in the world. She is trully the light of my life and my purpose at this point in my life. Since we came home, I feel like I am in a dream. Since the spring, I have had the black cloud of surgery looming over my head. Now, that cloud is gone! Yes, she will eventually have to have another surgery...maybe even a couple, but it could be years before that happens. For the first time since I was pregnant, I do not have that constant fear in the back of my mind of what's next or what could happen. I am choosing to live each day to the fullest and enjoying every possible minute that I can with MJ. The future plan for Macy Jane is this. She will have another echocardiogram in November at her follow up appointment and another heart cath towards the end of winter/the beginning of spring. The goal from this point on is to balloon the distal parts of her pulmonary arteries that up until now have not been ballooned due to inaccessability. The hope in doing this is that it will continue to drop the pressure in her right ventricle. Please continue to remember her in your prayers. She is living proof that prayers do indeed still get heard and answered. I will make a list of specific things to pray for for those of you that have asked me for that:1. That MJ would not get sick this winter with any respiratory infections.2. That MJ's heart would continue to pump effectively and that the pressure would remain at a tolerable level.3. For MJ to begin to transition more from tube feedings to oral feedings.4. For her overall development, she is catching up but is still considered behind. Hopefully I can upload some new photos of her from the past few weeks. I had to trim her hair a couple of inches a few days ago and now she definately doesn't look like a baby. She is turning in to such a pretty little toddler :) That's it for now, it is way past my bedtime. I am trying to get MJ to where she will sleep all night in her bed without these crying spells several times a night. If she so much as whimpers I wake up (baby monitor) and usually she doesn't go back to sleep unless I get up and pat her butt. However, 16 months later.....that is getting pretty old and I would really like to start sleeping through the night myself. Last night was the first night of the "cry it out" routine and she did pretty good. She woke up at 0530 screaming, but I let her whine for a few minutes and she put herself back to sleep. It's funny how my heart was racing the entire time and I felt sick to my stomach, but when there was silence, I was proud of her for going back to sleep on her own. She did the same thing during her nap today, so I'm hoping that a few more nights of this and she will sleep through the night. My fingers are crossed anyways :) I hope that everyone is doing well and I apologize if this is a repeat of info for some of you!!