Our Family...: June 2013

We just finished our last appointment with Cincinatti Children's hospital. We have spent almost every week there since the end of May, so we are thankful to be on this side of it! Over the last month, they have tested her kidneys, bladder, and colon to determine next steps. Here is what we know: Hannah has only part of one kidney that is functioning. That is a little scary for this mama! Her left kidney is not functioning at all. Part of her right kidney was removed in China, so it is small... yet still functioning. According to her blood work, it is still doing the job her body needs it to do within a normal range. Her GFR is a little low (59 and an average person is above 90) Hannah is fighting UTIs almost constantly. She has reflux in her right kidney and her bladder is not emptying properly. Her bladder is also really small, which adds to the problem. Her right ureteral seal is like a bubble, so that will need to be surgically repaired. Of all the things we have to worry about, her kidneys are by far the most important. It is a very real possibility that Hannah will need a kidney transplant at some point in her life, unless we can somehow help her bladder to do a better job. Her blood pressure is also really high (because of her kidneys) so she is on medicine to control her blood pressure. In order to save her kidneys, we have to control her hypertension and reduce infection and these are two things she struggles with constantly.

On a positive note... her colon is just fine! Her repairs in China for the rectovaginal fistula were done correctly. When the surgeon told me, my first response was, "REALLY!?!?!" and he said, "You sound as surprised as we were!" So, it was exciting to hear that something will be easy. Hannah is living with a colostomy and the only thing the surgeon has to do... is close it! Hooray!! At first they told us that kiddos from China usually need a surgery to repair the mistakes made in previous surgeries in China, and then another surgery to close the colostomy. That would mean Hannah would have to live like this for the next 6 months (minimum!) We were so happy to find out that we can close that sucker and move on with life!

We also had a gynecologist on team to evaluate that area of Hannah while she was put to sleep. We received wonderful news that Hannah has NO defects in that area and her body shows favorable signs to one day carry her own children. Although this is not an area of concern for many, many years, we were happy to hear more good news.

Although we are finished with our appointments we talk to someone from the Children's team almost daily about Hannah's care. Something came back in bloodwork... start this medication.... this UTI requires this drug.... I need an update on her blood pressure to see if the medicine is working... make sure you are doing this.... have you ordered this supply yet? OH, MY! It is overwhelming to say the least.

So, here is our plan. Hannah will only need ONE surgery (for now) to close her colostomy, remove her left kidney and fix her right ureteral seal. Before that can be done, we have to take control of her bladder so that it can "rest" for at least 3 months. She will be on medication that will paralyze her bladder and we will help her to void on a set schedule. The hope is that her reflux will stop. If it doesn't, her surgery might involve a ureter re-implant which we obviously don't want!! A few weeks before surgery we will re-test her to see if there is improvement. Surgery will be in 3-4 months and she will be in the hospital for about 5 days. We are not sure what her bladder situation will be after surgery, but we are willing to do whatever we have to do to save that kidney.

So, I'm not going to lie- right now is a really stressful time for our family. Hannah doesn't like that we are taking control of her bladder and it is a nightmare for her and me! I am reminded of that first week in China though- when I had to change her colostomy wrap. We both had a similar reaction, but after a week or so she laid back, was relaxed and trusted me. It is really hard for me to imagine us at that point with what we are going through right now, but I know we will. I emailed our nurse to tell her we were struggling and she was very supportive and reminded me this was a normal reaction! But then she reminded me that we are doing this to save her kidney and keep her from needing a transplant and all the stress just fell right back on my shoulders again. Please pray that Hannah will accept this part of her life and will start to trust us. We need to move forward with more medications but we can't until we are able to successfully take control of her bladder. I had a good ole fashioned cry tonight when I put Hannah to bed. She reached up and held my face as if to say, "I know exactly how you feel mommy!"

We love our little girl to the moon and back and we want nothing more than to help her. We are holding tight to the truth that her body is fearfully and wonderfully made!

On May 21, 2010 we saw Emma Grace's picture for the first time. We knew we were getting close to being matched, and we thought May would be our month. The shared list came out in China, and we didn't get a call. We spent the next 3 days a little depressed that we would have to wait another month for the possibility to be matched. Once a file is matched to a family, you have 72 hours to lock it or release it. Someone from our agency just happened to go into work on a Saturday morning (72 hours after the first list) and while there he decided to check the list. There was Emma.... and we were at the top of the list. A perfect match!! I can't imagine having a better fit for our family! We are so thankful for this sweet little girl and we stand in awe at all the amazing things God has done since her adoption!