It’s been a long time since I have posted and I thank Brad for his dedication to posting for you all. It’s sometimes so hard to focus my energy and attention to write about everything that is going on. Natalie is doing very well, considering that the changes they made during this surgery changed how her blood flows and how oxygen is delivered to her body. Her blood, red and blue, now mix as needed. It’s very noticeable when she is upset or de-stats how her lips and eyes now show the blue tint that is common with heart babies. The nurses have been working very hard to keep her calm and allow her time to heal. She hates that breathing tube and you can tell how frustrated she gets with it. It’s hard to watch her struggle to settle down, but we hope that it’s only for a little bit longer. We all hate the breathing tube.
Today they were able to take the nitric oxide away and she was able to tolerate it. The nitric helps to keep the pulmonary veins open and the oxygen flowing. We were able to transition that all to the sildenafil that she was on at home. That was a huge step. We didn’t realize how big until they told us that if she wasn’t able to come off it successfully they may have had to go back in for another surgery to try and correct it. We are so relieved that she did well.
Tonight we continue to wait for her to get more fluid off. Once she gets the fluid off her lungs, she has better chance of being successfully extubated. We are not sure when that will happen, but that is one step closer. She is starting to look like herself again.
We are waiting to play catch and play on the ipad together. She has become quite the comedian, hiding the ball from Brad under the bed and she loves to play catch.
We have come a long way since last Monday night. That might have been one of the hardest and longest nights of our lives. I can’t remember the last time that I cried that hard. We felt hopeless and so sad for our little girl. We were afraid that we were headed home to list her for transplant or worse, just home with out options. We were so relieved after meeting with Dr. del Nido. We were so happy that there was something that he could do. Amazing, the working hands of God in human form. He is amazing and he keeps very close tabs on Natalie. We know that she is not done with her heart journey and we are hopeful that we are now headed in the right direction.
Here are a few pictures from the week. We thank you all for your continued prayer for both Natalie and us. Your encouraging words and support help us get through it all. God has given us peace and rest. We couldn’t wake each day with hope for Natalie without Gods unfailing Grace! Praise the Lord!