Emma's Surgery

Today, Emma turned 8 weeks. It's hard to believe that she has been in the hospital for almost 2 months. 8 weeks ago, I never would have imagined that it was possible. Today was also the day that we have been hoping wouldn't come. Emma had surgery to place her shunt. We are still a little shocked at how quickly we went from thinking she could avoid a shunt to having it clear to us that it was the only option. Although we didn't want it, she has it. Now hopefully we can move on.

A little before 7:00 this morning, Jeremy, Sarah and I arrived at Children's Hosptal to meet Emma and the nurse that was bringing her over from Beth Israel. We were sent to the Pre-Op area where Jeremy and I sat in a little bed space surrounded by nurses, doctors and many other families all waiting for their time to come. Sarah waited patiently in the lobby ready to keep us company when we got out. Emma arrived a little after 7 with her nurse and the ambulance team that drove her over. She was transported in the little box attached to a gurney. She was sleeping comfortably to my surprise since she hadn't had anything to eat since midnight last night. We reached in and held her hand and replaced her binkie when it fell out, but didn't get to hold her. A chaplain came by and asked if we wanted her to say a prayer for Emma which of course we did. It made me cry, but gave me a bit of comfort at the same time. The anesthesiologist went over the procedures for putting her to sleep and the risks that went along with it before having us sign a consent form. Then we met with the neurosurgeon who explained the procedure again, the risks involved and also had us give consent for the surgery. When consent was given, she was taken away to the operating room, still in the incubator she arrived in. I cried as they took her away fearing that something would go wrong and feeling sad that she was the one who had to go through this and have her life changed forever.

I gathered myself and a nurse led us to the family waiting area where we met Sarah. Children's Hospital does an excellent job of keeping the families informed about how things are going. As you sit in the waiting area, the liason nurses come by every 90 minutes with an update on your child. As we patiently waited for the nurse to give us our update, I was struck by the fact that Jeremy and I weren't alone. It's hard not to feel like you are the only ones going through this, but I was comforted knowing that all the parents and families waiting with us were going through the exact same thing.

Sarah did a great job of keeping things light, making us laugh and just being a comforting presence. Around 9:40, the liason nurse came to find us. To our surprise, she said that Emma was fine and that they were just finishing up. No more than about 5 minutes after she gave us the update, Dr. Grondin, the neurosurgeon, came to tell us that the surgery went well and Emma was fine. We asked questions about her recovery, which he patiently answered, then thanked him for taking such good care of our little girl.

Feeling relieved that all had gone well, we were soon taken to the recovery room to see her for a minute. She was resting, but was opening her eyes. She looked just like herself, although, a little wiped out. I wasn't able to see her shunt or incisions at that point, but I was just happy to see that she looked good and was somewhat awake. They gave me the hair they shaved off in a little jar labeled 'First Hair Cut'. I was surprised that it wasn't more hair and that they so thoughtfully saved her hair, knowing that it might be important for us to have it. Emma had to go down to radiology at that point to have x-rays called a 'shunt series' to make sure that the shunt was placed correctly and that they extra tubing was tucked neatly in her belly. About 40 minutes, later, we returned to the Post Anesthesia Care Unit to see Emma again. She was more awake than she had been before and had been cleared to go back to Beth Israel.

We met Emma back in her room at the NICU around 12:30 where we were finally able to see her where her shunt was placed and were finally able to hold her. When she was placed in my arms, she looked up at me, studying my face, looked up at Jeremy who was standing behind me and gave us a little smile as if to tell us that she was okay. I was a little bit scared to hold her not knowing how to handle the area where her shunt now sits. The nurses helped us feel a little more comfortable with it. I felt the same way I did the first time I held her. I had to relearn how to handle her, at least, until she begins to heal. We were able to give her a tiny bit to eat to calm her down, but not too much in case she had a reaction to the anesthesia. We spent the rest of the afternoon with her trying to keep her comfortable, making sure she continued showing signs that she was okay. She behaved like herself, but was cranky and seemed like she was uncomfortable. She had some Tylenol and calmed right down. We were able to feed her a little more around 5:00 pm before laying her down in her bed so that she could rest and recover. We made our way home about 12 hours after we left this morning. We were relieved that it was over and that she was doing well.

Sarah had to go back home this afternoon. I feel bad that her trip was spent in hospitals, but was so grateful to have her there! She helped us through the toughest part of this whole journey. Although, I still feel sad and angry that my little angel now has this device inside of her especially at her young age, I am relieved to be past it and excited that we will be moving on in the next few days.

Thank you so much for all the love, support and prayers you have all bestowed upon us. We are so grateful and know we couldn't have made it through this without all of you! Please continue to pray for her as we await her arrival home. We still have a few lingering things to resolve and we may have to go through this again, but for now, we can rest a little easier that Emma will be okay. She is truly amazing and a true fighter. Despite the possibility of needing a shunt revision, Emma will not be limited in any way due to her shunt and will be able to live a very normal life!