What a year…

January 8th, 2010 No comments

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.
When you plan on starting a family, you never think that things won’t turn out the way you picture them. You know things won’t be perfect…you just expect somewhat ‘normal’. Especially when you start planning months ahead of actual pregnancy, and make sure you’re doing everything possible for your baby to have the best start before it’s even born. You even go so far as to plan the month you want the baby to be born (and it actually worked!). However, no matter how carefully prepared you are…there are just some things you have no control over. Like finding out at your exciting 20 week ultrasound that there may be a problem with your baby’s heart. Then being sent to a specialist in hopes that is not the case, only to find out it is in fact true. We’re not talking a little hole, we’re talking two pretty big holes. Holes that are definitely going to need surgery once the baby is born. To top it all off, the type of heart defect is not always, but quite commonly associated with Down Syndrome. So you go to the doctor’s appointments and the specialists and continue to gather an overload of information. Then it dawns on you, do we want just any surgeon repairing our precious baby’s heart? The next thing you know, you’re 8 months pregnant and moving 423 miles to be close to a hospital and surgeon known for their success in this area. God had a hand in all of it, from my OB knowing an OB in the area we were moving, to our pediatric cardiologist having gone to school with one of the pediatric cardiologists who would be taking care of us when we moved. Talk about Divine intervention and the unexpected.
Right after Faith was born she spent 15 days in the NICU. That was rough, but God brought us through. She came home on 24/7 oxygen and pulse oximeter (which kept track of her O2 sats and heart rate and alarmed if the parameters were exceeded). That was rough, but God helped us maintain our sanity. We had appointments with the cardiologists, pediatrician, nutritionist, physical therapy and speech. That was exhausting, but God gave us strength. We were getting a little excited, and definitely nervous as her surgery date approached. Excited at the prospect of her most likely not needing the O2 and pulse oximeter when she came home from the surgery, nervous about…well, about the surgery. From here you’ll have to go and read our September/October posts about the surgeries (yes, plural) and stay at the hospital. And yes, that was rough to say the least…but God was with us all the way. I never could have imagined until we went through it that God can give you such peace in the midst of such pain. To all those who kept Faith and our family in your prayers…THANK YOU!!! It means so much to us that people all over the world have been praying for our family.
Even though Faith came home with the O2, it was not for long and she is completely off it now and doing wonderful. She does need medicine about every 6hrs (though I try to stretch it out during the night so we can all get a little more sleep).
I cherish every day I get to spend watching and helping our little girl grow stronger and learn new things exploring her world (though that doesn’t mean everything is always easy).

Better Late Than Never

November 5th, 2009 No comments

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…

4 weeks later

October 1st, 2009 1 comment

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. IMG_2481

Still Holding On

September 25th, 2009 1 comment

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. 31938237.jpg 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.

Day 19

September 22nd, 2009 1 comment

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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…