I know it’s been quite a while since I’ve written a post in here. Those of you who have been following our blog know it has been a rather eventful year. As I reflect back on what has transpired over the past 12 months, I still have a hard time taking it all in. I think to say that it has been a roller coaster of emotions is an understatement. Sometimes it all feels like a bad dream. However, when I’m giving Faith her medicine every 6hrs or so, I’m reminded of everything that has taken place to get us where we are now. As joyful and painful as it all was, there were a lot of good things that came from it. The biggest one being that God worked a miracle in our precious baby girl for everyone to see. We also have new friends in the doctors and nurses who took care (and are still taking care) of Faith. Read more…
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I know it has been a while since the last time Nell or I updated our blog. It has been crazy for the both of us. Faith keeps Nell busy all day. Her medicine and eating schedule is enough to wear anyone out. Every six hours she has to receive some type of medication. She has also found it to be more fun to take a nap while she is supposed to be eating. This has forced Nell to cycle between food and medicine from 5 in the morning until 11 at night. Read more…
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Today is day 28. We have now spent an entire month at the hospital. It has been an amazing journey. Over the last few days, we have seen some amazing improvement. For the first time, the doctors listened to her lungs and thought they sounded normal. We have also seen a number of medications and pumps disappear. At one time, Faith had eleven different pumps, now she is down to three. God has just done tremendous work healing our daughter.
Today is also special because it was the first time in four weeks that Nell was able to hold her. Both of them were incredibly happy. It was actually very cool to watch. The volume of air going into Faith’s lungs increased significantly as soon as she was in Nell’s arms. We are both praying that she will be extubated tomorrow and that she can be held on a regular basis.
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Today Faith continued to cooperate. The doctors were pleased with the progress that she was making. It is slow progress, but steps in the right direction nonetheless. The staff is still not planning on things going very quickly. Yesterday they painted her door.
It is much more colorful. The social worker wants us to bring in pictures to decorate her room. It’s hard to want to decorate because it’s like you are giving in to her being there for a while longer. By not putting anything up, we are able to hold on to the thought that she will come home sooner. We’ll see how it goes over the weekend. Maybe if things continue the way they have over the last day, it won’t be much longer.
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It has been six days since Faith’s last surgery. Her heart appears to be doing well, but her lungs are still very sick. She has developed the same bacteria’s in her trachea that were there before the last surgery. The doctors have been working aggressively to treat it, but that has required a substantial amount of fluids.
This has made it difficult to heal the other damages to her lungs. In order to help with some lung recovery, her chest has been left open, and she has a patch holding it together. The idea is to allow her heart and lungs more room to work under less stress.
Some good news is that the secretions in her lungs that were once bloody have been clearing up. Unfortunately at this point, there are so many other things going on. It is like a vicious circle. Read more…
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