1 year KidneyVersary

So I wrote this last week but had issues uploading it. So here it is I sit here in total disbelief that today marks one year since I gave my kidney and Faith started her life with the organ she so dearly needed. At this time I was in the surgery room and Dan and my family were waiting on word how I was doing and trying to keep Faith happy and occupied while they waited to take her back. I remember waking up in so much pain as they rushed to get it under control before they wheeled me to my room. I feel like it was just yesterday when my bed made the corner and I saw Dan and my family and Darbi. I burst into tears, which was the most excruciating pain. It didn’t take long for the pain to get under control and I became, to say the least, very loopy. I laughed, my family laughed, and for the brief moment I didn’t feel pain or worry about Faith. Dan had been in such a hard place all day running back and forth between hospitals checking on both of us, all the while trying to keep it together. Darbi that night stayed with me so Dan could go back to the Ronald McDonald house to try to rest. During the night I started hurting bad again and finally after a couple hours of bladder pain I woke Darbi since I couldn’t reach the nurse button. Come to find out my catheter had moved and wasn’t draining. After that was fixed I was able to sleep, but the morning brought nausea and pain. I got up and tried walking, which my left leg was not working very well at all. I couldn’t go very far without feeling weak and sick. And on top of that I had gained 15 pounds in water weight in 24 hours from the fluids and surgery. I worked my booty off to walk the halls so I could get out and be with Faith. And a day and a half later I was discharged to drive to see her (which every bump HURT), and be with Tristan for his birthday. She was still out of it and in allot of pain when she woke up. The next few weeks was a juggling act of trying to not over do it (which I always did) and trying to get Faith healed and figure out what was going on with her. She of course had to go in for another surgery since she was retaining so much fluid in her abdomen that it ripped the inside stitches and put a drain in to pull out fluid, which took a few weeks to get to a point that it was manageable to go home. So now here we are a year out, first time we have had almost 12 months at home since she was born. We still have daily meds, bi monthly lab draws and monthly doctors visits, but the child we have now is nothing like the one before transplant. She is walking, talking, eating, drinking the amount she needs to, and is just as strong willed as the moment she was born. We aren’t out of the woods and will never have a normal child’s life but the life we have been given by God so far has been a growing, stressful, and beautiful life changing one for many involved. Over the three years almost since we found out about Faiths condition I have watched to many kids with the same disease pass away, get sick, hospitalized numerous times, and even go into rejection not even a month after transplant. It’s a scary road some days where I come to the reality that we are never going to have a normal life with Faith. But every day when I see her smile, laugh, love on her animals, scream for ice cream, and come running to me I realize I would take every minute with the known chance we may be in the hospital again, for the fact we weren’t even supposed to see the smiles, the laughs, or what she would grow up to love. So for that I thank God every day, even on the hard ones (which are very hard sometimes) because she is such a joy to my life and everyone who sees her. So as I mark this year by spending most of it in the hospital today talking to doctors and tests, I am thankful for every minute I’ve had with her, my family that has been so supportive since the day we heard the awful news, our friends that have been there and given support and laughs when I needed them, God for giving me that gift of faith to believe and trust him and for Faith, and for my husband who has been through this journey every second with me. Has cried with me, laughed with me over so many goofy moments with her, held my hand when I was in pain from giving life to our daughter, and holding my head up when life got too much. So here is to the next year and blogging amazing moments that come our way through the days and months to come.

Beena a LONG LONG time since I was able to sit and write but this is a REASON!! Back to two years ago, again can’t believe it has been two years. I was sitting saying goodbye to Tristan and Savanna at Mel’s house not really knowing how long they would be there, but again with what we were told I didn’t see it being to long. The thing is I was supposed to be induced, but true to Faith I just went into labor on my own that next morning. It was like she was listening and knew it was time to start fighting, and fight she did. Almost one whole year went by since she had to seen the inside of a hospital room again, 3 days to be exact, but that soon drastically changed again. She had got her transfer set changed on her PD catheter replaced 4 days earlier(which I really believe what happened) she got sick, and sick quick . We checked into Children’s on May 25th not knowing what we were going to deal with but hoping all the same that it was just something meds would fix. That would soon change when the two doctors walked in the room to tell us that on top of peritonitis she had a fungal infection which would require her to get her catheter removed because her peritoneum would may now be too scared to use for dialysis and so she would have to be put on Hemo until the infection cleared. The whole time the doctors were talking to us I held it together pretty good until they asked if I had questions, and at that point all I could think of was transplant. She had JUST been referred so I knew it wasn't a push asking if that could be an option instead of doing Hemo dialysis till the next surgery to put the PD catheter which may not even work. They said they would ask, and that is when we PUSHED. On August 23rd, a day before Tristan’s 9thbirthday me and her went into surgery to exchange my kidney to my baby girl. I was able to save my baby girl. I got flack from some people saying how I could take that risk when I had other children to live for. That was sickening to me, kind of like the doctors asking how much we would do to make Faith live. My answer ANYHTING I CAN. So tonight we are just hours from when she was rushed and cared for into this word. She was never welcomed but rushed and worried over. I think seeing that she had to show them it was worth it. She lies here tonight asleep, just done with her nepo shots and ready to celebrate her birthday with close family since the risk of sickness is way too high. See I kind of had a false sense of security when she had her transplant thinking that we would be in the clear but that is far far from true. The risk of cold, flu, or normal sickness is not a no biggy for us. Especially with the white counts being the way they have been with the meds she is on. I had a mom of another transplant child ask me if I was worried or scared to go home. I said no not much just need to get used to our new “norm” well little did I know how much it would really affect me, my husband and our relationship. Trying to constantly now worrying and praying God gives you strength, you forget to pray for your marriage, again something the doctors told us would suffer. We have tried really hard to not let it destroy us, but I would be lying if it was not very very hard. More than anything though we are about to hold hands together about to sing our miracle, and I again say miracle baby Happy 2nd birthday. Our Faith will be 2!! She is crawling trying to walk and such a joy you give so many around us I feel blessed to have been the mom to deal with this road God has given us because you can’t have another baby so special, happy, and so important to so many. Happy birthday baby girl I love you so very much and years from now I hope you can look back and see how much you were loved and prayed for. Mom