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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

The Day my Miracle came into this world...

The morning came so slow that morning, I was so excited. Sleep? Nope that did not exist the night leading up to this morning. I tossed, I turned, I watched TV, I took three baths, and nothing could occupy my mind. Forty five minutes before it was time to leave I took a shower, Blow dried my hair, Straightened, and put on my make up :) I left the mascara off today, I knew this was going to be an emotional moment. I was like a ball of energy! Ready to go! I woke Deeco up and rushed him out the door <3 I was ready to go!

Deeco & I drove separate cars from my parents. Our hotel was only located about 5 minutes from the Miami Holtz Children Hospital.

 Our car rides, Even being super early in the morning, there was traffic! We had time to goof off!

Finally we arrived! With traffic the drive was a little longer than we expected. I didn't have a nerve in the world! I was more anxious! I was so ready to see my little man and touch him. It had been a long road already and felt like I was waiting for this day forever. I wasn't a bit nervous because I had already experienced the same incision as a C-Section. Plus my previous surgery was more intense than a C-Section. I told Deeco over and over in the recovery room before we went back to not forget to tell them  I wanted to instantly do skin and skin. Not cleaned off yet and all. It was my biggest request. For months I had been reading about the "skin to skin" moment and how important and beneficial it is. As we got off the elevator at the hospital they even had a huge poster about it. I couldn't reintegrate it enough to him how important this was for me to do.

The wait in recovery felt like a life time. All of us have sprint service, for some reason our phones were showing an hour behind. We all sat and checked our phones over and over. We had no clue they weren't showing the correct time.

Everyone came back to visit to occupy my time. Every time Bella's turn was up she would cry to go back again to stay with me. She's a great support system :) Always makes me smile. We ended up just leaving her as a permanent guest and everyone else had to take turns :) 

Finally we realized our phones were not working correctly. We didn't have an hour more wait. It was just minutes away. Deeco was extremely nervous. Everyone had told him all the horror stories of what you see during a C-Section. I was totally ready to go. I just wanted my little boy in my arms. Not a worry in the world It was time for me to go back!

When they came to get me I was ecstatic. I kissed my family goodbye, They all gave me my well wishes and yelled as they strolled me away how excited they were to see my little angel. Bella cried, she wanted to go too to meet her "baby brooder". She didn't understand that no kids were allowed. I kissed Deeco my "See ya soon" kiss and off I went!

As I went back to prep and get my epidermal, Deeco was coached and dressed in his scrubs. I can remember laying on the operating table, the doctor said "Okay are you ready to do this?" My first response was "No, You better go get Deeco! He cant miss this!". He giggled and said "He's on his way, Don't worry he wont miss anything!". 

Don't let the smile fool you :) This man was nervous! You know that awkward smiling and giggling you do when your nerves start to take over? That's what he was doing in the operating room. I still joke with him about it to this day. 

During my C-Section I think my famous line was "Look over the curtain, Do you see anything yet?" He would hesitantly peek and saying "No? Not yet every time". Before you know it he said "He's here!" Taj didn't cry right away like the movies? But I instantly started crying with Deeco. We held each other and I just kept saying "Are they bringing him to me?"

Deeco and the nurse behind me had told me they had to go clean him first, I could hear him cry now. It was the most emotional moment of my life, at the time. I cried and kept trying to turn the top of my body to look threw the machinery to see if I could catch a glimpse. Before knew it he was held up, It was a 2 second hold up literally. I didn't get to see him, I was so upset. Deeco had captured this picture that I had later on got to see in recovery. 

TAJ DAVID PORCELLI 

Born 12/20/12 @ 11:07am. 6 pounds 6 ounces

All I could think about over and over again was how this was the most amazing moment of my life. Remember that little boy I was carrying that I was told I had to terminate. GUESS WHAT?! I DID IT. I fought, I took my chances and he was here! I was overwhelmed with joy and love. I couldn't believe it.

Suddenly I heard "Come on dad its time to go." Deeco started to scurry out. I didn't understand, why hadn't I seen him? Why didn't I do skin to skin. But I knew every delivery was different and my doctor was not a very emotional man. Maybe its something he just didn't do. I layed there and talked to the nurses as they stitched me up. As the doctor finished he said "OK girl We did it". I responded with "Thank you so much Doctor, how is he?" His exact words were, "He's good, sometimes babies don't catch on to the breathing right away out of the womb, but he will when he gets into the nursery". I had already read about this so I was not alarmed. I was relaxed, happy and filled with emotions I had never felt before. 

I was taken back to recovery, to recover before I was put into a room. My mother came back first. I instantly started to get very sick. I don't do well with anesthesia. I get extremely sick. My mom got me buckets and cold rags to cool me down. I was miserable, It always last about 6 hours. I was hoping it was not going to happen this time. 

Everyone came back one by one to see me. Deeco was still in the nursery with Bella. I asked everyone how he was with a smile of joy on my face. At the time I thought everyone else was looking back at me with the same smile. Every one's response was "He's perfect, he looks just like Deeco". My mom stayed with me and tried to keep me as comfortable as possible. Felt like Deeco was gone forever. I wanted to see pictures, I wanted to hear from him he would have the most information.

I'll never forget the moment Deeco walked into recovery. I looked up to find him with eyes of pain looking back at me. I could see the lump in his throat. I asked what was wrong. He instantly broke down and told me everything was going to be OK. I knew right then things weren't OK. I pried for answers and no one really had any. The answer's were his breathing is a little off. I was hurting now, the happiest moment of my life was beginning to turn into the scariest moment of my whole journey. I thought I was in the clear, I was no where near there. I cried the most hurtful tears of my life. Never did I know something could hurt that bad until that moment... Soon to come the hurt was only going to get greater.

I waited for my room, and finally it was ready. Deeco spent most of the time down in the nursery. Well not exactly nursery, Taj had been put in the level three NICU unit. At this time everyone believed, because I delivered at 37 weeks his lungs had not fully developed yet. It's common, simple process.

Deeco would bring me these pictures back from each visit. I was so upset, I didn't get to hold him, see what he looked like in person or anything. I didn't expect any of this, Why is this happening after we made it this far? He explained to me he had a few tubes and was in an incubator. I just layed there in hurt.

I stayed in my room for 11 hours until I was cleared to go to NICU. My head was going a million miles per hour, I was hurting like I could never put into words. Please we made it this far....

I only had a longer journey lying ahead of me... With a broken heart and feelings I could never explain I stood up out of bed and sat in my wheel chair. I'll never forget that trip to the NICU, Deeco had been the amazing father he is the second Taj was born. He never left his side and counted the seconds until he could bring his Mommy to him.... We were only walking into the hardest moments of our life.

The night before my C-Section...

It was Wednesday, December 19, 2012. Since I had to deliver in Miami because of my high risk situation, We had decided to stay in a hotel the night before. We had to get up super early the following day, It just made more sense to stay the night before. Before we left I had the whole house decorated and ready for Christmas. I had spent the previous week doing my homemade decorations and we all decorated the tree as a family. I wanted everything perfect for when we came home. I was going in for my C-Section December 20, 2012 and going to be coming home on Christmas Eve. A better present than bringing home a newborn baby did not exist. I couldn't wait to have him home Christmas morning as Bella opened all her gifts.

Presents were wrapped and stockings were hanging. We were all ready for Santa to come the night we got home :)

That morning we all loaded up & met at my parents house. My parents & sister also had a room at the same hotel so no one had to drive early that am. I remember arriving to my parents, They were running around trying to figure out their new video recorder. They aren't too technology savy sometimes :) They were ready to capture this amazing moment in all of our lives! We were finally here, We made it and I was about to be blessed with a beautiful baby boy that no one believed I could have. 

When we arrived to our hotel in Miami we were all so excited! What a long ride for Bella, She was getting antsy. Bella loves the idea of hotels. Jumping on beds, Running wild and being as loud as she wants. As soon as we arrived in our room, Deeco and I had a gift waiting for Bella. She was so excited. She had seen it wrapped for weeks and always said, "That's for me when Fallon has my baby brother". She was so happy! We had got her the baby doctor :) Now she could play doctor to a little baby in the hospital.

We then went down stairs hung out by the bar and then the roof top pool. I was so anxious, I couldn't believe that now in less than 24 hours I was going to hold my little man! I had been through so much for this day and I just could not wait. A million things were running through my head, but I was as ready as I could ever be.

That night my dad took us all to have sushi at a fantastic place in Miami. We had so much fun. Tons of laughs, spit ball fights, and endless food. Every time the waitress came we all added several new items for everyone to pick at. After dinner we all went to our separate rooms. It was time for rest. 5am was going to be early for everyone, For me not so much. Sleep? How was I going to sleep? 

17 weeks to go....

I had 17 weeks until little man would be in my arms! I had three more small surgeries for the tumor and multiple doctors appointments. I seen oncologists, orthopedic doctors, and my GI surgeon. As we came closer to the end we decided to put the tumor totally on hold. I wanted to put my tumor on the back burner and enjoy the rest of my pregnancy as normal as possible. I had so much to do before little man came, and so much I wanted to experience during this amazing moment of my life.

First I started with my baby shower. My baby shower was everything I had dreamed of. We did a co-ed shower, rented a hall, had my custom fondant cake, bounce house for the kids, music ect. I was surrounded by my loved ones and so blessed I could share this special moment with all the special people in my life. I couldn't of asked for a better day.

During my pregnancy Deeco and I enjoyed snorkeling the reef. It was very relaxing. I think we spent everyday at the reef for about 3 weeks. I can remember always trying to remember to keep my distance from the rocks. Sometimes I would forget that I had such a big belly and scrape it against the rocks. We would always laugh when we would see the marks.

One of the funnest memories of my pregnancy was the big flood we had. Deeco and I looked out the window and couldnt believe how deep it was. We took the dingy boat out and actually started rowing it threw our street, I think I was either almost 8 month or actually 8 months when we did this! It was fun, worry free, and a day I'll never forget!

I worked on my nursery. This was my favorite part of prepping for little man to get here. I was in love with my furniture and my grandmother had custom bedding made, huge salt water fish for the walls and a Guy Harvey Rug. Everything in his room will forever have such a powerful meaning. My Memaw is a very special person in my life, and I'm so happy to have these pieces from her. I also had his name letters custom painted from an artist of the skins of three fish. Everything has so much meaning behind it. I could sit in his room for hours and relax.

Time started to fly by! 

We enjoyed times with our friends, this was our friend Angie's 30th birthday night, We all took a limo out to dinner and celebrated with a surprise birthday party at Cobb's Landing. What a fun night :)

This was my 25th Birthday night! A birthday pregnant is different :) I enjoyed a nice meal at Benihana's with Deeco & my best friend, Stacey.

Daisy was ready for Taj to come too. She constantly wanted to be on my belly. She would scratch me in a dead sleep to roll over so she could lay on my belly. I was so uncomfortable I didn't want to be touched. She would give me no choice, her cries and scratches were beyond aggravating, I gave in every time. Daisy loves Taj, But I think she was nervous because she had always been Mommy's only little baby :)

I was almost ready to go :) Still feeling great... Soon that changed.

Anyone that know's me, I'm a HUGE black friday shopper. I love a good deal. This year we wanted to get my step daughter an electric car. I couldn't find anything under $400. Black friday ads came out and I found the perfect car for $120. You know what that meant? We had to do black friday shopping no matter what this year. I can remember standing in the line for the car at Walmart from 8pm until I think 12pm. People were looking at me like I was nuts! But I could not miss this for Bella. Deeco stood inside and waited by all the dolls I wanted for Bella. I mapped out a whole list and route for him to do inside. I even had my sister and a couple friends standing at other items I wanted across the store :) As soon as they released everything I got the car and then saw a fire pit in a distance. I was debating rather I should grab one, I shouldn't be lifting anything. What do you know, HUGE belly and all I pushed through the crowd grabbed a fire pit. I carried it over my head and waddled as fast as I could inside with it. I finally found Deeco her turned around, "OH MY, what are you doing!? PUT THAT DOWN". When he saw I was fine, we laughed. Nothing was stopping me from my black friday shopping. Needless to say I shopped from 8pm to 4am! Not bad, I usually do a complete 24 hours but 8pm to 4am being 8 months pregnant was not bad :) Now it was time to rest until Taj came. I couldn't move for FOUR whole days after that. But I knew Bella was going to have a good Christmas :) It was well worth all the pain....

This was only my Walmart trip :) 

I think everyone's end of the pregnancy is just uncomfortable all together. I was getting extremely tight inside. My back was beyond hurting. The tumor and Taj were fighting for room and it was now closing my rectum. I was internally bleeding and often in so much pain I didn't leave bed. The last couple weeks were so miserable, I had never been more ready in my life to have a baby. It was now time to meet my little man... <3

My son's angel...

My son has an angel, I like to call him Dr. Yasin. The day I met this man, I knew he was going to take care of us. Dr. Yasin never missed a beat. He remembered every little detail about me. I met Dr. Yasin on August 24, 2011. I was exactly 20 weeks pregnant. I first went for an ultra sound. Ultra sounds were always our favorite part. Because of the tumor we had an ultrasound almost every week.

After my ultrasound, I was put into a room to be examined by Dr. Yasin. After we all introduced ourselves, he began the exam. Little man was moving all over, Dr. Yasin's first response was, "We have a dancer in there." I smiled a smile of relief, I was over whelmed with happiness!

After my exam, Dr. Yasin called us into his office. I began to get nervous. We all sat down, and he pulled up my medical imaging on the computer. Dr. Yasin is very straight forward, quick, and to the point. Took me a while to get used to. Me, I'm very thorough and have to know every detail. Well I learned quick, there was never going to be a straight answer in my situation. Dr. Yasin proceeded to tell us he would take on the challenge. I was besides myself, WE DID IT! Now we just have to get through the rest of the pregnancy. I'm already half way there! He came up with the plan that he wanted to deliver me at 37 weeks, scheduled C-Section. Towards the end of my pregnancy, the baby would start fighting for room with the tumor. We all know the results of that. Also I would have no birth canal. We have to play it safe and keep both the baby and me as comfortable as possible. But we also had to keep the baby in as long as possible for developmental reasons.

We were confident in his decision and left the office that day on a high note. We were all ready to conquer this. From this day on we drove to Miami every week to be monitored. If we weren't at Dr. Yasin's office I was with one of my surgeons. I still didn't have a date or even estimate of what week he would choose to deliver me. But it was time to start planning my babyshower! I was so excited :)

I could never explain in word how thankful I am for Dr. Yasin. We had searched and searched and he was the only doctor that said we would go fourth for with the pregnancy. He said no way he would let me terminate. Dr. Yasin made my life long dream of becoming a mother come true. He had lifted that fifty ton brick off my chest. He was going to make sure I experienced this next 17 weeks as normal as possible.

I left the office that day with his personal phone number and email. He kissed my cheek and said "It's going to be okay, We will do this". My Mother and Deeco teared up and hugged him, thanking him over and over again. I owe it all to him, The rest of my pregnancy went pretty good,  minus small surgeries on tumor ect. But as for my son, He was growing strong and that over came anything else I was going thru with my health. I'll post photos and explain how the end effected me. No one's comfortable in the end, but mine was just a nightmare.

I don't want to over play each and every doctor's appointment. Dr. Yasin will come in again when my son was born...  That's when he really saved his life......  <3

Here's a few photo's from Dr. Yasin's office during my pregnancy.

My little Soldier, growing strong.  

By this time, I had THREE surgeries pertaining to the tumor! & he just held on tight!

This was my last ultrasound, I was ready to GO! Uncomfortable, Miserable, in constant pain and just so swollen! COME ON BABY TAJ!