Just when you think thing are crazy, things get a little crazier. Friday night I was snuggling up with Liana while she slept. Around 12 am the nurses came to check on her and I fell back asleep. Then 2 hours later, Wade's phone starts going off. My first thought is why in the world does Wade have an alarm set for the middle of the night. He then hands me the phone and Wade's mom is on the other end. I hear the words, "Sydney's entire tube has come out!"If you know anything about g-tubes the actual button came out and the balloon of saline was still full!Her tube has only been in for a week and a half and the doctors had told us unless it had been a month to not attempt to put it back in because it could push the stomach away from the abdominal wall. So Bev, Howard, Adleigh and Syd headed up to the children's ER. I made my way from our floor to meet them.In all this, Sydney was fine and happy. I opened the door and she smiled at me and said hi. Thankfully, they saw us quickly since these stomach holes can close up quickly if the tube is out. The doctor was able to place a tube back in and it went in easily. I was thanking the Lord for sparing us another surgery. We were in the ER for for about 3 hours and Sydney went back home and I headed back upstairs.
There were so many emotions going on. I felt horrible that I wasn't there for Sydney, horrible that I had to leave Liana. I was so nervous that we might have to have a surgery if Sydney's hole had closed. How would we handle Liana being in one room and Sydney in another and still have Adleigh at home? I laughed at how crazy this all was...I mean how often do these things happen at the same time? But during it all I reminded myself that God has his hand on our family. I don't need to be in control because He is. The next day my friend Beth sent me this verse:
In the last few weeks, we have spent a lot of time in the hospital and talking about different procedures. I have felt pretty overwhelmed dealing with the medical issues that we are facing. In my head I know that each of these procedures will help our kids but you heart just hurts to see your kids go through surgeries and be in pain.
Pastor Steven had an amazing message this past weekend that preached on taking a difficult time and calling it what you want. So our family is calling this season we our in as catalyst for our girls to be healthier and stronger. If you haven't watched the sermon you need to watch it now! Check it out here.
I will try to do a decent job of catching everyone up on things since it has been a few months since my last post.
She is growing up so fast. She is saying all kinds of words, loves books and stuffed animals, and thinks her sisters are the best things ever. She has started saying my favorite kid phrase ever "hold you." In February, we went to CF clinic and they were concerned that she hadn't gained much weight. We went back and forth several months seeing if we could get her to try fattier foods, more food, shakes...believe me we tried everything. But Sydney is one of the pickiest eaters of all time and even food that she likes she will sometimes refuse. So about a week and a half ago, Sydney had another round of constipation, refused to take the medicines that would help her, and didn't drink much water so we were back in the hospital for dehydration. Her CF doctors decided that it was time to put in the G-tube to help get her on the right track. So Sydney has had her G-tube for over a week and is doing pretty good with it. She is starting to heal and just throws a fit when we have to connect and disconnect the tube. Thankfully her feeds are just at night right now.
As I am writing this, we are in the hospital with Liana (1 week after Sydney got out) to see if she still needs her shunt. She had been having headaches and all her CT scans showed her ventricles were small. She also had fluid in her abdomen so when we added all those together her doctors figured this was the time to either do a revision or remove the shunt. And our family is praying hard it can be removed! We will be in the hospital about a week while they monitor how she does with her tube being drained and then clamped off. It is crazy timing since Liana will miss her first week of school. We did manage to work it out that she could go her first day of school though.
She is healthy and happy. She has been such a helper in our house as we have been in hospital mode. Adleigh is going to school without Liana which she was a bit nervous about. Yesterday was our first day of school so it has been a little crazy getting ready for that as well. On a fun note, Adleigh has been talking a lot about wanting to do gymnastics and I think she will be wonderful at it. But how do you find the time to add that in?!
And also, I am extremely thankful for all of you who are praying for our family. There has been a lot going on but we are believing for great things and are grateful we know our God is in control of this all! Please continue to pray for healing and no shunt. Also, pray for Wade's parents as they are taking care of Adleigh and Sydney. They are having to take over care for Sydney with the G-tube which is a little intimidating. I am beyond grateful for our church family and they have made a schedule of nurses that can come help and people are helping us in the hospital as well.
I will keep you updated on how things are going!