Ellen is at home sick from school for the first time this year; Allison is laying next to her watching TV and Lydia is on her mat fast asleep. I guess there is no better thing for me to do than to reflect on the past couple of weeks. I have been emotionally and mentally exhausted. Partially because hospital life with a toddler is much different than it was with a little baby. I guess I need to be super thankful that she endured so much while she was still really young and we did not have to be there constantly to entertain her and keep her from pulling out her lines. It was a chore and left me feeling older than what I should be feeling!
A couple weeks ago we went into the surgery clinic to get some help with wound care. Lydia's tube had been leaking for several months, causing her severe pain and I was struggling getting her belly to heal. I think we were all at our wits ends with what to do. Taking the tube out and then discovering that it needed to be reinserted would result in a HUGE surgery. So making the decision came with a lot of prayer and discernment. However, my husband and I were both at the point that she was telling us it was time, she had had enough and so did we.
Our surgery nurse was so nice. We discussed options that we could take to improve the site. And in true Lydia form, the day we go to the doctor, her site looks better than it had in a long time. But as our nurse was about to leave to gather some supplies, I asked the question of what is our plan? If we are going to surgically close it in a month, what is the hold up? Does she really have to be in this much pain for that long? She said she would ask the surgeon and see what he said. I know that our GI doctor was not on board because she did not have the weight gain that they would have liked to see, however, we felt that removing the tube would help this. And since she could not tolerate feeds through it anyways, there was really no sense in keeping it in.
When the nurse walked through the door she said that the surgeon said let's remove it and see if it will heal on its own. WHAT? I could not believe my ears. So standing next to me was Allison and we watched as the tube was removed one last time. The nurse had asked if I wanted to do it and I said no. She said that some families like to do it just as a remembrance thing. I guess at that point I had not really prepared myself for seeing my daughter, for the very first time, without a tube. Since the very first time I held her, she had some sort of tube or appliance connected to her. Allison could barely contain herself. She was so excited her sister was getting her tube removed.
I texted Eric to let him know and I don't think anyone or anything could wipe that smile off my face. I was SO excited that the tube was gone. Maybe now our daughter would be able to life a pain-free life. She could partake in the activities just as everyone else does. It was an amazing experience.
When we got home she was moving around the house with ease and a freedom we had never seen before. She was so happy, I did not think that she could be happier than she was before, but God surprised me and showed me just how happy she can be! She was doing fabulous.
The very next day she started struggling. By the afternoon she was in terrible pain. Everything she was eating or drinking was coming out the tube site. She napped and when she woke up she was in a terrible pain. She was shrieking and shaking. She could not calm herself down. We rushed down to the ER at Children's in Milwaukee. It is about an hour from our house, but my husband made sure we got there quickly and safely!
We were admitted that night and they placed an IV to run fluids. The next morning we discussed a plan. The skin around the site was so compromised they were worried about doing surgery because she would be at such a high risk for wound infection. However, we needed her to keep up her oral skills. We decided placing a PICC line would be the best thing and giving her IV nutrition so she could heal. I was super worried about her not eating for several days as she might go backwards on her oral skills. While they placed the PICC they tried to insert the feeding tube again. However, she had closed pretty far and they did not want to irritate the site. So, we would just have to limit what she could drink and change her dressing as often as possible to keep the skin looking good.
It was a long couple of days and she was on a lot of pain medicine. It was crazy. Tuesday came and my stomach was in knots. This was a simple procedure, however, because there were several unknowns, the site area was still very compromised; there were A LOT of variables going into surgery. I was super uneasy. Our surgeon is FANTASTIC. I just have a HUGE sense of peace knowing that she is in his hands. What a blessing he has been to our family.
I could not sit still for her operation. She was in there for one short hour before I saw on the board that her procedure was finished. I could finally breath again. Our surgeon came out just glowing. He had nothing but good things to say. He said the surgery was super easy and she was already extubated and sitting on the bed smiling and talking. Oh thank God for answered prayers. I was SO relieved.
They came back to get me to go to recovery shortly and I was able to hold her again. She was perfect. Oh how amazing that was. We were then taken back up to our room, no ICU. Daddy was able to see us again and he was just as excited as I was.
She had a pretty good recovery. She is still up and down on her eating because she is also fighting off a virus. But she has proven to be a fighter. Nothing will keep her down!
There was a time on this journey that I was mad at the surgeon for constantly cutting into my child, making more scars for her to contend with. When I look at her beautiful tummy I see an amazing story. I see her strength. With each scar I remember something about her and how she fought to get where she is. I see God's Hand wrapping her and holding her as He healed her and brought her to the life we know today. It is nothing short of a miracle. It is one of the most beautiful stories that can be told in this world.
Her scars not only tell a beautiful story, show her strength and her character, but they make her Lydia. God created her just the way she is and what a masterpiece she is. I am so thankful to be her mom. I am so thankful that she continually teaches me. I am so blessed by her.
So I look at her belly and just stand in awe. She is so amazing and so strong. I am so thankful for every single experience that God has allowed us to walk on this journey. I am so thankful for her scars and the stories she gets to tell. She has healed, the battle is over and we can proceed to the next part of our journey.