Our heartaches in NICU...

I'll never forget that moment I arrived to NICU. As I write this post of my blog, I cry the most hurtful tears to this day. I still to this day relive this moment if I ever tell this part of my story. & everytime it hurts just as bad. Taj was first taken to a level 3 NICU at the Holtz Children's Hospital at Jackson Memorial Health Systems in Miami, Florida. At this time we thought his lungs had not fully developed yet. It is common and something now a days that can easy be fixed. It still hurt but not nearly as bad as the days we had unexpectedly ahead of us.

The first time I saw my miracle was 11 hours after my C-Section. It was nothing I had imagined up to this day & nothing any mother prepares for. 

This moment I died. I was empty and lost. Words could never explain. I wiped my tears away to pull a smile through. It was my first photo with my angel. The first time I had ever layed eyes on him. I can remember over & over telling him "Please pull through, Mommy loves you so much muffin". Soon after this photo was taken a nurse came over and told me Taj was being moved. Instantly I thought maybe he was going to the regular nursery. Little did I know I was so wrong. Taj was taken from NICU 3 to NICU 5, five minutes after I layed eyes on him for the first time. I instantly knew this was more serious  than what we all thought. She said he needed to be in a higher NICU for closer monitoring. Our Christmas Eve homecoming was coming to a huge hault. We no longer had a time limit of any time of coming home.

I stayed in NICU every second I could. I went to NICU, back to pump my breast milk and straight back. I barely slept. I was not going to leave his side.

Soon things took a turn for the worst. Taj did not have premature lungs. Taj was born with collapsed lungs and now the hole in his left lung had expanded.  As well as the collapsed lungs, he was bleeding internally in his lungs, stomach and had phenomia. 

The day after Taj was born I was sitting in my hospital bed. A male doctor came rushing through the door. Usually someone would do a little knock, or Hello as a warning before walking completely in. I was pumping at this time and Deeco jumped up to tell him to please hold I was pumping. Deeco instantly backed away, the doctor was so frantic, threw open the curtain around my bed and started waving papers in my face saying "I need you to sign these papers now to save his life". I didnt even ask questions I started shaking, hysterically crying and signing as fast as I could. Deeco was standing up frantically asking "What's wrong? Can we come?". All he explained was he needed a tube now to be connected to his lungs to breathe for him. He said he would come after they did the small operation which would be about 2 hours. I was a mess, I could relive this day word for word, second for second. My world had not officially came crashing all the way down. Maybe I didn't do it. But why would this happen to me now, I fought so hard, risked my life, and never gave up. How could this possibly happen now?

I could never explain the feeling of looking at my son like this the first days of his life, and I could never explain the hurt and how helpless I fight. There's no pain in this world that could amount to seeing your child hurt and having no control of it. I pushed myself to be there every second I could. Nothing was going to stop me. 

From day one I held his hand through it all and till the day I die I will. I had overworked myself so much from my back and forth trips to NICU, that I had soon started internally bleeding large amounts. Nurses had told me constantly to please get my rest while I was still in the hospital. There was nothing anyone could say to me to keep me away and resting. I fought this long and now I was going to fight with his as close to him as I could. I was then admitted back into the hospital for my internal bleeding. I knew something was wrong the day before I finally went and admitted back but did not want to leave Taj. My tumor now was causing seriously problems and the bleeding was horrible. I still didn't stop. As soon as I was released, I didn't listen to one word and was right back on my pump and straight to NICU schedule.

The night before my C-Section Deeco had gave me this bracelet as a gift for having his son. It wasn't much in others eyes but the meaning behind it today is priceless. I wore this my entire journey through NICU. When Taj was placed in the level 5 NICU Deeco pulled it out from our suitcase and said wear this the entire time and never take it off. I didn't I prayed with it at night, throughout the day and never took it off. Today this is a piece of my journey and one day I will pass it on to Taj as a piece of our fight TOGETHER.

I was then released and we were sent to stay at the Ronald McDonald house on campus. We weren't prepared for this stay, financially, mentally or physically. At this point it was a day by day stay and we had no estimate of going home. 

Christmas eve we had recieved bad news, With all his tubing and procedures he was still on 100% breathing and nothing was progressing. More blood was in his stomach and he now had not eaten in five days. Just IV's of fluids. All my breast milk was stored in the freezer in NICU labled incase he started progressing. I still never stopped pumping, every three hours day and night. Deeco and I were falling apart. Equally so hurt we didn't know anymore what to do with ourselves. My parents brought us meals, clothing, and did everything to make it as comfortable as possible and to support us through this hard journey. 

As a mother and the woman that holds my family together as well as my household, I wanted to be there for Deeco, he was hurting as bad as me and doing equally as bad as I was. I couldn't be the support he needed because I was a wreck also. I'll never forget his dad showing up as I was in the hospital pharmacy getting some prescriptions I needed. The minute I had said Deeco needed someone to do what I could not do for him at this time, HE was there to be by his son as Deeco was standing by his son. This day meant so much to Deeco and helped him a lot through this hard time.

Christmas Eve night Deeco looked at me and said "Get dressed I'm bringing you to a Christmas Tree." We could no longer see Taj for the night. I was hesitatant but proceeded to do as he wanted. We cried, joked and tried to be postive. The lights and beautiful tree at Bayside, Miami that night had brought a little bit of happiness that night. It felt to get out of our misery for a moment. Though we were living a nightmare we stood there and still counted our blessings.

Christmas Eve we had started to drive to the NICU from our Ronald McDonald House. Throughout the night we called every three hours and still no progression. Christmas day was the most emotional day of all. Things were not looking up, we were at the end. We were losing it and had unbearable heartbreak running through our bodies. I was getting weak. Deeco suddenly pulled the car over and said get out and sit on the curb. I cried and cried asking "Why just go, I want to see him now!" Deeco opened my car door and guided me to the curb. Both of us sobbing he grabbed my hand and said "Put you head down and close your eyes, this is our last hope".  Deeco began to pray to god to help us through this and save our little miracle. We prayed over and over and fell into each others arms with outburst of cries. As we pulled ourselves back together we drove to NICU to see Taj and wait on the doctors to do their rounds.

We did our normal proceedure of entering NICU, washed our hands, put mask on ect, We always waited until the other one was finished so we could always walk up to him together. As we walked over to Taj we started gently touching him and saying our "I love yous" "Please muffin fight for us", My son opened his eyes for the first time today and looked at me. I burst into tears and was so overwhelmed. God was beginning to answer our prayers.

We still had a long road after this. & quite a roller coaster ride. Tonight I'm packing for my Tumor surgery which is another large part of our story. I leave tomorrow AM, and will be operated on Wednesday, July 10, 2013 at 5:30 am for anywhere from 6-18 hours facing more hardships then I have got to explain yet. I would love to finish this part of the story and continue with the rest of my journey. Tonight I am going to leave this part of the NICU at this and continue as I can.

Though I am facing a tragic surgery along with many risk, this still is the hardest part of my surgery seeing my son this way and living this struggle for him to survive.

I want to leave this blog for now on the note of no matter what happens to me, no matter if this betters or changes mine and everyones life tragically from Wednesday out. I have peace in my heart that I have already accomplished my biggest dream in life. That was to find love with an amazing man & give birth and life to a miracle. I did it and no matter what happens from this day on, I lived every part of my life that I dreamed of. & every step of this hard, heartbreaking road as been worth it... All because of,

Taj David Porcelli

Deeco Porcelli

& My amazing family that has gone above and beyond for all of us. 

Also all of you are a huge part of my journey, the support, prayers and love have guided us through this and I could never thank you all enough.

I hope to finish this sooner than later. But for now, this is what I will leave off with <3

Love always,

Fallon <3