Lily’s Journey - Part 4: Recovery

There is so much to share with Lily’s journey so I am writing them in parts. You can read them here:

Part 1: Lily Has A Tumor

Part 2: The Biopsy

Part 3: Formal Diagnosis & Surgery

The hardest part of this whole ordeal was seeing our baby girl in the state she was in after surgery. The doctor just performed a craniotomy making an incision from ear to ear across her head. When Noah and I made it to the pediatric intensive care unit to see her after surgery there were nurses and doctors surrounding her. They had already removed her breathing tube and she was able to see us.

She had been under for over 12 hours and I know that was tough on her body. She lost a lot of blood and had to have 3 units of blood transfused. She was already puffy and there was a bandage across her nose. We cried together when we were able to get up close and hold her hand.

The doctors didn’t want her fully sedated because they needed to ask her questions to ensure she was neurologically ok. She was able to follow Dr. Thompson’s commands immediately after coming out of anesthesia.

DAY 1 after surgery

Taking everything in and seeing her that way physically made me sick to my stomach. I excused myself and found the rest room. I stayed with Lily through the night while Noah went home to care for the other kids.

We have been incredibly lucky to have an amazing support system through all of this. My mother-in-law had been visiting when we first found out about the tumor and she has stayed with us to help with the other kids and also be there for Lily. We are so grateful and lucky to have her.

But our other friends and family have been wonderful too. The kind messages of concern, the prayers and the sweet gestures have truly humbled us. So if you are reading this, thank you ❤️

The nurses and everyone treating Lily at Memorial were excellent. We even had some familiar faces from Lily’s last hospital visit which was comforting. They showed us compassion and empathy and took loving care of Lily.

The first night Lily did get sick. I think her little body couldn’t handle the blood and anesthesia.  Other than that she was in and out of sleep. She would wake up and be thirsty and could drink water out of a straw. A few hours after surgery she was taken to get a post-op scan. The result was miraculous. There was no signs of the tumor.

BEFORE: 5 cm tumor originated behind her right eye and extending up into her skull

AFTER: no more tumor!

Day 2 and 3 were HARD. For all of us. I hadn’t left the hospital since Monday. I had not seen any of the other kids and Lily had some rough time with being poked, not really having an appetite and struggled with her pain management. She went from being able to see through one eye to being so swollen both eyes were completed shut. It was truly heartbreaking.

DAY 2

DAY 3

After a few days in the PICU, she improved. They removed her foley and another IV. She was able to stand for the physical therapist and walk to the bathroom. Eating and taking medicine were her biggest struggles.

Eventually, we convinced her to eat so she could move out of the PICU and graduate to the children’s floor.

By Day 4 and 5 Lily was talking more and really trying at taking her medicine and eating. Her swelling finally started to subside and she could open her eyes. She was happy to be able to watch TV. She wasn’t on morphine anymore and only down to Tylenol for pain management.

DAY 4 leaving the PICU

DAY 4 finally able to open her eyes 

DAY 5

DAY 5 playing in the kids playroom

On Friday, we got the good news that Lily could go home. The day we got discharged she had special visitors- her siblings. She was so happy.

They say kids are so resilient and it really is the truth. We never expected recovery to go so well. She has amazed us in so many ways. She has showed us some much grace and courage.

Going back to the room to be discharged! 

Back at home in our own bed! 

Lily has continued to improve daily since coming home. We have had two follow-up appointments and Dr. Thompson is so pleased with how everything is going. The plan is to have another MRI and CT scan in a few weeks.

We could not be more pleased with Dr. Thompson, Dr. Petruzelli, and the entire team that cared for our little girl. We will forever hold a special place in hearts for this group of people. We are so thankful that this tumor did not go down another path. It could have gone down a much scarier path if the tumor had been cancerous.

Hopefully, this will be the last time we will have to deal with such a frightening situation. Thank you to everyone for praying, sending us positive thoughts and following along Lily’s journey.

Follow-up appointment with Dr. Thompson and Ms. Kristen

Stiches are out!