Home Sweet Home - Part 2

I left off my previous post with us arriving home with Ava on December 19, 2012. Aidan was fast asleep in his swing and Ava seemed genuinely happy to be home. She was smiling and we were so excited to get her out of her car seat after the long trip from Rochester. Brad unbuckled her and pulled Ava out of the car seat. As he lifted her out, she started to cry. This seemed odd to us since she had just been smiling and seemed so happy. We immediately checked her g/j tube to make sure it was ok. I guess it is just a habit we have developed whenever she seems uncomfortable, because we are so worried it is going to come out. Much to our shock, the button was out and all of her tubing was hanging from her stomach. I remember gasping for breath and thinking to myself, how can this be happening. She was crying, but thankfully not screaming bloody murder. I wanted to cry and scream bloody murder, but I knew I had to stay calm and get Ava help.

I told Brad to watch her while I called the pediatrician. I spoke with his nurse and told her what happened. Since we weren't sure how Ava would react, she suggested we call 911 and have them transport her to the ER. I called 911 and within 5 minutes of arriving home, Brad was in the ambulance with Ava and I was following them to the ER at Blank. Poor Aidan woke up while the medics were putting Ava on the stretcher. He smiled and laughed when he saw it was us, because he was so excited mommy, daddy and his favorite sister were home. Little did he know, we were headed right back out the door to the hospital again. Ava did ok while we waited for the ambulance and thankfully she wasn't bleeding, was breathing fine and was easily consoled with her pacifier. Poor Brad was sick with worry that he had pulled her tube out when he lifted her out of the car seat. Based on her reaction, I tried to reassure him that I didn't think the balloon was fully inflated or she would have been in much more pain. Off to the ER we went. Meanwhile, a huge snowstorm was brewing and only added to our fun. 

When we got to the ER they checked her balloon and confirmed it had less than 1 ml of water in it, when it is supposed to have at least 4-5 ml. Unfortunately they can get slow leaks and because it is inside her stomach, you don't always have a warning sign that it is deflating until it falls out. If Ava just had a g tube this would have been no big deal. We would have popped it back in and headed back home. The problem is she has a g/j tube and the tube has to be placed back into the small intestine. They tried to transport Ava back to Mayo since they know her complicated history, could place a new tube and then deal with any feeding issues that resulted from this latest hiccup. However, the storm was in full force by this time and we could not safely transport her there either by ambulance or helicopter. They decided to admit her to the hospital and have Dr. Kaufman from interventional radiology at Blank place the tube in the morning. Our biggest fear was that it was so difficult to get her up to a rate of 29 cc per hour, we were scared this would be a huge set back and getting her back up to her rate would be another long journey.

Dr. Holland was her Dr. in the ER and she was absolutely amazing. Brad and I were pretty scared and Ava is a complicated kiddo. However, Dr. Holland worked with Ava's team at Mayo, put the g tube back in so the hole wouldn't close and worked to come up with a plan given that the storm was keeping us grounded. There were also two transport nurses who were phenomenal and they were able to place an iv in Ava on the first try, which is no small feat. They did their best to arrange for transport and were great at reassuring Brad and I while we waited. She also had a wonderful nurse who came on to get her admitted to the floor and he did a great job making sure they took precautions to limit her exposure since there were several kids on the floor with respiratory illnesses. We thank each of them for helping Ava and us through the craziness that afternoon and for keeping Ava safe. We also want to thank the Child Life team for having Santa drop off some presents for Ava and Aidan. It was so sweet of you to think of her and of her brother at home. 

Dr. Kaufman was great and placed the tube without incident on Thursday, December 20, 2012. Unfortunately Ava had a really rough afternoon and evening after it was placed. She was in pain and    inconsolable. We had a very long night and she wasn't tolerating her feeds very well, even at half the rate. They decided to try to transport her on Friday early in the afternoon by helicopter back to Mayo so her GI team could assess how to best proceed given her complicated history. We were supposed to leave at noon, but then we were delayed an hour because they had an emergency transport. Then we were supposed to leave at one, but they had another emergency transport. However, at some point before or after the second one, a check engine light came on in the helicopter. They had to call a mechanic in to fix it, but they thought we could leave by seven. The mechanic thought he fixed the issue, but when they took it for a test drive the light came back on and they grounded the chopper. Our new plan after waiting all day was to fly her to Mayo on Saturday morning. 

Thankfully, Ava turned the corner and had a better night on Friday night. I was able to slowly advance her rate and had her at the 29 cc per hour goal by 7:00 a.m. Her pain seemed more controlled with Tylenol every 4 hours and I felt like she was doing much better. After speaking with her pediatrician and Mayo, we decided we could head home that night as long as her pain was managed and she tolerated her feeding without any incidents. Ava did well the rest of the day and we finally got to head home on Saturday night.

When we arrived home we were both terrified to take her out of her car seat, even though we knew the reason the tube fell out was because the balloon failed. Brad did the honors and thankfully all went well this time. We were thrilled to be finally be home and hopeful that this time we wouldn't have to turn around and go back to the hospital.

The first couple of nights were rough, as Ava was unsettled and her g/j tube site was still causing her pain. Plus, she was still having her choking and gagging fits that she cannot always clear by herself. So I slept right next to her at night so I was right there if she needed help.

For some reason this incident rocked us to our core. We were so excited to be home and Ava had to work so hard to get there, that we just couldn't understand why we were experiencing another set back. We will never forgot looking at her tube and seeing it hanging from her stomach. It was a rough several days while she was in the hospital and no sleep for me didn't help things. Part of the reason I couldn't post the update was because I was so sleep deprived I couldn't think straight. It was also because I just couldn't believe this happened. That this was our life. I wasn't sure how much more I could take. I was frustrated, tired and sad that once again my little girl had to be in pain and in the dreaded hospital.

However, this is just part of the ups and downs that come with CHD. It isn't the first time and it won't be the last time this type of thing happens. It takes us a few days sometimes, but eventually we reframe  and we realize how lucky we are that we are dealing with a g/j tube issue and not heart failure or lung issues. Despite all of Ava's challenges, we have been very lucky and we are so thankful that her heart function is doing so well. She is a strong girl and my hope is that 2013 is going to be her year. She deserves it. She has endured more than most adults do in their entire lifetime and she is only 8 months old.

It was a wild ride to get home and we took a detour that we never expected. However, we made it home for Ava and Aidan's first Christmas. That had been our goal this entire time and we made it. despite all the obstacles and by the grace of God, we made it! Thank you God for getting us to this moment and for giving us strength when we were at our breaking point. The saying that I have adopted as my theme song if you will these last several months is, "Faith makes things possible, not easy." This journey has not been easy by any stretch of the imagination, but without our faith in God it would have not even been possible.

Ava sleeping in the ER while Daddy holds her. 

Ava talking and playing with the transport nurse who placed her IV on the first try. Thank you!!

Ava sleeping in her crib at Blank. This is her new favorite pose. 

Ava in her crib at Blank. 

Ava's door to her room at Blank. Thank you to the nurses who make her a special sign and snowflake. 

Ava dressed in her signature zebra print and ready to try going home for the second time. 

Daddy getting ready to pull Ava out of her car seat when we got home. 

Aidan so happy to see his sister when she got home. Of course, he had to hold her hand right away. So cute!

Daddy and the twins enjoying being home together at last. Definitely worth the wait.