The MFM walked into the room and told us “ this is going to be hard “ as soon as I heard that I broke down again...
This is my daughter Lila’s story. I was so excited to find out that I was pregnant with my second baby. It was like a dream come true. A little baby brother or sister for my daughter. At the anatomy scan they confirmed it was a girl and that one of her kidneys was slightly enlarged so we would have to have a follow up ultrasound.
At my 33 week ultrasound we found out that it was much larger and there was swelling in the brain. The doctors explained to me that I had to be transferred to another hospital in the city that had a high risk unit. I completely broke down, I was terrified of what was causing the swelling in her brain.
After several more ultrasounds and an MRI the MFM walked into the room and told us “ this is going to be hard “ as soon as I heard that I broke down again and I had the largest lump in my throat.
She waited until I stop crying to explain what was going on and she finally told us that the mask that was causing the swelling in the brain was a large tumor.
She told us that she might not even make it to birth. We had appointments with a neurosurgeon that explain to us nothing could be done.
The Tumor had too many blood vessels to do anything. If she would go to surgery after birth she probably wouldn’t make it. Even just doing a biopsy to see if it’s cancerous would most likely caused her to bleed out
The only thing to do was perinatal hospice care which was, to me at the time the worst thing that I could do. I felt like I would just give up on my child. She was scheduled for a C-section at 37 weeks. I was so excited to meet her but I was so scared of the outcome. She made it this far but we were also told that after they cut the cord that she might not breathe on her own.
I felt her come out and I heard a little cry. She was transferred into resuscitation room just in case anything were to happen. 20 minutes later my hubby comes up with her and she’s breathing on her own she has a very adorable hat. She had a large head due to hydrocephalus but she was the sweetest thing I’ve ever seen.
She was doing amazing. Breathing, crying.
It was such a magical moment to see her.
She gave us 26 beautiful and magical days. It was such a short period of time but all that baby knew was love. We got to bring her home for a couple days. She spent time with her sister, her dog, our families. We also had a family reunion with all of her little cousins.
It was so special. On March 1 around 9:30 PM she had her first seizure which we were warned about. I called an ambulance and at the time I thought she was gone. I called my mother and we all met at the hospital. We went back to the Roger Nielsen house which is the perinatal hospice. She kept having seizures throughout the night so they ended up giving her some medication to help with them. The next day we had the entire family come visit her to say their “ see you later “ overnight the doctor told us that this was it that if we kept feeding her it would just do more bad than good
It was honestly the worst moment of my life to be told to not feed her because these are going to be her last moments. On March 2nd, everyone just loved her and kissed her and hugged her but we couldn’t move her from the bed because she would have a seizure if you picked her up. As soon as we got to the hospice at 11pm on March 1st, I just held her hand in bed I never let it go . When people would come visit her I still held her hand it also tell me when she would have a seizure because she would squeeze my finger hard and bring it up to her chest, it was so heartbreaking
March 2 was also my mother’s birthday. I was so scared that she would leave us on her birthday but that baby was so strong and she made it to midnight. She left us on March 3 at 1:50 AM
Lila squeezed my finger and brought it up to her chest like she would usually do when she had a seizure, but this time it was very different. It was very severe so I yelled out to my mom to get the nurse and the nurse ran in left to go get some medication but then it kept getting worse so another nurse ran in and held her while she was throwing up.
And then I saw her lips turn blue. I told the nurse what was going on and she handed her to me right away. I asked the nurse exactly this “ IS THIS IT? “ The nurse nodded. I just screamed out for my baby scream to do a CPR but we just held her told her how much we loved her(wow this is hard to write) she took her last breath‘s in my arms. I walked over to the couch and just hold her for a couple of hours. My family ended up sleeping at the hospice house and when they showed up in the room it was honestly such a relief to have them there with me.
We miss her every single second of the day. She was so so special and so sweet we love her so much and always will.
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