The hardest day of our lives was Monday April 17th, 2017. The days leading up to it, my stomach was sick, my mind was in a bad place, I was scared, and just really out of it. Sunday night I don’t think either of us slept a wink.
Monday morning came, my emotions were all over the place. Putting Elisabetta in the car, knowing where we were headed, and what she was about to face, I was a fucking wreck. I was SO sick, I knew what was coming for her, and I felt so guilty. But I knew this had to be done, I knew I had to do this for my baby girl. Mike felt so horrible, the night before even, he said how he felt like he was the worst dad. We know we had to get her CPAM removed, but we didn’t want her to go through this. What if something happened and we lost her? All these bad thoughts ran through our heads.
I put her in this onesie that day, as she is SO strong like me. I think that’s why she has fought the CPAM like a champ.
When we got to the hospital that morning, my parents got there right when we did. I felt HUGE comfort having them there, especially my mom. My mom is my best friend, and I knew that day I needed her more than ever.
Once we got checked in, I got up from the registration desk, and saw a penny on the ground, heads up. I picked it up and it was the year Elisbetta was born, I knew that was a sign from God, that all was going to be ok.
We got called back, my stomach sank. I remember being in that room, which felt like hell. They got her in her little hospital gown, and checked her weight and such.
The anesthesiologist came in, to talk to us about how they would do everything and the risks and such with that. He was so nice, and I knew he would take care of our baby girl well, as would his team he had with him.
Then, Dr. Malek came in to talk about the plan he had for surgery, the risks ( which scared the shit out of us ) and how long it would possibly be. He planned to do it all keyhole, but he said it could be possible open chest if it was getting too difficult or problems arised, and they had to do open chest instead. All these risks, all the scary shit, and just knowing she was going on the operating table hit me like a brick all of a sudden. I started crying my eyes out, I was just SO terrified to hand her over, and to put my trust in his hands. To trust him with my baby girl, who I love more than the world. My doctor promised to care for her like she was his own, I trusted him and I trusted GOD.
Then it was go time, this picture was taken 5 minutes before I walked her down the hall, and put her in the crib bed, before she was taken away. I cry right now thinking about that very moment, where I said goodbye to my daughter, who had no clue what was ahead, and the fact that something bad could go wrong. I lost my shit, I cried so hard, I couldn’t breathe, and then I watched the nurse stroll her away.
THAT was the hardest moment of my life. I can’t even think about that moment without crying. Mike and I both lost it, and just knew we had to stay strong for her. We went to find my parents, my best friend, my son Anthony, and his girlfriend.
I needed my mom more than ever, and as soon as I saw her, I just cried in her arms. I am forever grateful for all the support we had from my family, and just friends like ALL OF YOU who sent prayers and love that day, really through this whole journey.
I leaned on GOD more than ever that day. I prayed harder than I ever have. Mike and I went to mass at the church chapel, which really helped me, and was so great that they had that.
( note Mike wrote for us in the chapel book )
She went back at 9am, and they projected 5-6 hours. We had a beautiful and wonderful lady who was the woman who would update us on surgery every hour and a half. She was so sweet, so up-lifting, and truly cared. I was so comforted by her, but also scared to death when she came with an update.
Every single time she came, I feared what she would say. After a couple good updates, I felt a tiny bit better. It was great to have our own little area to all sit, I felt comfort with family there. Mike and did go walk around outside, walked around the hospital, tried to eat a little, and kept our minds busy as much as we could. I had many breakdowns though, as you can only keep your mind busy so much when you know what is happening to your daughter.
It was the longest, scariest, most exhausting, and emotional day of our lives.
Towards the end of the day, it was just us waiting, as I wanted everyone to go, as they were there long enough. I appreciated them all being there, but it was a long day, and Mike and I were wrecks.
at 4:45 pm, we got the call that she was DONE.
I finally felt like I took my first breath that day, as soon as I heard those words and knew she made it through.
I PRAISED GOD SO MUCH. He kept my baby girl safe, he watched over the doctor and the whole medical team. God is GOOD.
( pic after hearing her surgery went well and she was done )
We got to go back and meet with the doctor ( Elisabetta was still in recovery for an hour or hour and a half )
As soon as I saw the doctor and he said all was successful, I hugged him so hard I might of hurt him! Lol. I never hugged someone with such gratefulness and I truly was grateful he helped my little girl. I cried happy tears, I just was so happy it was over.
He said the surgery was very difficult, but he was happy to have done it all keyhole. He had to make one more incision than usual, so he could keep it keyhole, and that was amazing! Her mass was so big and really was making it difficult, but he did it without having to do open chest.
Her whole upper lobe on her left lung was removed, her lower lobe is healthy and he didn’t have to take any of it, as he originally thought he might need to.
We got done talking to him, then waited for the call that we could go see her. An hour and a half later, we got to see our baby! She was still out of it, she looked so peaceful, and I cried so hard and was just so happy!
That night, it was rough for her, as the next day was as well. I don’t think we slept, as Mike stayed with me the first night. But they managed her pain well with pain meds, which was good.
Once they took her chest drain out on Wednesday, she was so much better! We have had no complications, which there were some to be worried about with this surgery.
GOD IS SO GOOD. I might say that a million times, yet my child is proof that he is. He has protected her ALL this time, since they found her CPAM at my 19 week US. She had such a HIGH risk of heart failure, as her mass was a dangerous size. Our first doctor basically said we had a little chance of her making it, then we switched hospitals and got HOPE.
The weekly ultrasounds, the fear of her being born not breathing, the two hospital stays right after she was born, and NOW this journey has come to an end. The storm has passed, the rainbow is here .
We are home, which is INCREDIBLE. I never smiled so big leaving that hospital, as I knew SHE DID IT, SHE FOUGHT CPAM!
She is doing so well, just some pain which we are managing with tylenol, bad gas, and she is just one miracle! I am truly grateful to Children’s Hospital, Dr. Malek, his whole medical team, the nurses, the staff, and all of YOU that have prayed for her and us.
We thank GOD above all! We go back May 19th to see the doctor and for her to get a chest x-ray to make sure all is still looking good. Please keep the prayers, as we do continue to need them.
I am forever grateful to God, thank you for blessing me with Elisabetta, thanks for making me see even more what matters in life, and for protecting her during this whole journey.
Elisabetta Rose, you are forever a warrior princess, and I will never forget that day of your surgery, but happy now it’s behind us, and you made it through. Those scars you will realize you have one day, those are your warrior princess scars that will forever remind you of how amazing you truly are.
I love you. I am so lucky to be your mom and now it’s time to start living with less fear, as that nasty CPAM is now gone from your body.
God is good. Thank you all for letting me share her journey with you. <3