Monday, May 5, 2014

Like Everyone Else? No Way!

I look at my little boy and wonder how did he get so grown up? Sometimes I forget what he went through to get here. Sometimes I think why aren't you reading like everyone else? Why don't you follow directions like everyone else? Why are you Break Dancing in choir rehearsal instead of standing quietly like everyone else? Why don't you try to blend in like everyone else? Then I remember…he isn't like everyone else. And that is what I love most about him. He is my Light!

It is so easy to forget how it all began; to just get caught up in the day to day routine of life. But, every once in awhile I will see a picture or a video of Luccio as a baby and I remember. Usually it is fond memories of his first smile and his silly baby laugh that was so adorable you couldn't help laughing with him.

But, other memories are not so pleasant and when they hit me out of nowhere I feel like I am back in that moment as if it had just happened.

 I remember being in the hospital at 30 weeks pregnant. It was August of 2006. I had been inpatient on the Maternity Floor since that June. I had been in pre term labor and was on hospital bed rest. But, that day I had an ultrasound scheduled. I was dressed up in a cute maternity outfit, a cream colored shirt and beautiful teal and cream print skirt. It was my first time wearing anything other than pajamas and comfy clothes in months. I even had on a necklace. And shoes! I was so excited to be getting into a wheelchair and getting out of my room! I had my hair and make-up done and was ready to see my babies on the screen. I loved ultrasounds. Seeing that my babies were moving and growing reassured me and helped me get through the weeks of staring at the hospital walls.  I had many, many ultrasounds. But, it never got old to see those babies swimming around.

My doctor was the best Maternal Fetal Specialist I could have asked for. He had kept my boys alive up to that 30 week point and I felt confident I would make it a few more weeks. I saw him every morning on rounds for weeks and weeks. I trusted him, he was my advisor. My Yoda. I began referring to him as Winston, but never to his face.

Anyway, on that ultrasound day, Winston was doing his usual quiet thing where he would scan my belly and look pensive while he took measurements. I had learned by that point not to interrupt him. I waited for him to say everything looked great so I could exhale. But he said nothing. Sometimes he did that.   But, then I saw a flicker across his face. It was just a quick flash of something. I felt my stomach clench. I asked him what was wrong. He didn't say anything. But, his eyes glanced away for a second and I knew it was something. Something bad.  My heart started to race. I asked him what he saw and he said, "there's a shadow."

A shadow?? I had no idea what that meant, but in my gut I knew it would alter our lives. From that moment on "the shadow" would mean something.

Winston said the shadow was on Baby B's head. He started saying things like MRI, followup scans, encephele, meningecele, amniocentesis.

Bottom Line: There might be a hole in Baby B's skull. Or a tumor.

All of a sudden the room felt small, so very small. Oz and my mother were there and asking Winston some questions and trying to look at me with reassuring smiles. I could see that they were trying really hard to not look as freaked out and panicked as they really felt. But, my head got fuzzy and I couldn't hear them anymore and all I could concentrate on was the walls felt like they were squeezing me and I couldn't breathe.

Somehow I got back to my room and I remember seeing my Nurse's face. She knew. She had heard. I was sobbing so hard I could barely take a breath. She helped me back into my bed. I put pajamas on and swore I would never wear that freakin' cream colored shirt again.

The next few days blurred together. Everyone was buzzing. Tests were scheduled. I was put into an MRI at one point. But, I got so claustrophobic I couldn't stay in there. My belly was touching the top of the machine and every time the babies moved or my stomach contracted it would feel like I was stuck in there. I knew I had to do the test. Every test I did was one less test they would do on my baby when he was born. So my Nurse brought me valium, Oz got into the machine with me and held my head reassuring me I was still at the edge of the tube and could get out at any time. I made it through the MRI.

Next was the amnio. A Resident worked under Winston's guidance and stuck a giant needle into my belly to get a sample of amniotic fluid from both Baby A and Baby B.  The sample from Baby B came up with blood so Winston took over. In the end, the test results took 2 weeks to come back. The results showed both babies had normal chromosomes and were boys. But, the bad sample from Baby B made it impossible to tell anything further.

Winston and the rest of the staff started putting together a plan. The MRI has showed a Neural Tube Defect, a hole in Baby B's skull. There was talk of possible brain matter floating around. No one could be sure what was happening until the babies were born. The goal was to stay pregnant as long as possible and get Baby A out alive.

Wait. What???

That snapped me out of my dazed and crazed state. My Mama instincts kicked in and I demanded clarification. I wanted everyone on the same page that the goal was to have both of my babies stay alive. Period. Everyone nodded, but Winston said that we were at the point that if Baby A was in jeopardy decisions would be made to save him.

The Mama Bear came flying out at everyone around me. I decided there would be no more fear in me. They were not A and B.  We had already named them and we knew from their positions which one was which. Baby A was Vincenzo and Baby B was Luccio. BOTH were coming home alive and I would not hear otherwise. So I took all of the medical advice into consideration.

Then I got on the phone and had my friend Sister Mary Anthony come and visit. She brought St. Anthony oil to rub all over the my belly. She contacted all of the Sisters of her Order to pray for my babies. There were nuns up and down the East Coast, in Texas and in Poland praying for those boys daily. My friend gave me a St. Gerard medal and a piece of St. Gerard's cloth to pin to me. Another friend brought a handkerchief from the Shrine of St. Gerard the Patron of Difficult Pregnancies. My neighbors added the babies to their prayer lists at their churches. My friends from my Campus Ministry days were storming the heavens with their prayers too.

I didn't know if it was blind faith or just complete denial, but I started getting everything in order to deliver babies that would eventually make it home and I wouldn't hear otherwise. Oz and our families started painting the room for the babies and putting up cribs.

My mom, aunts and friends came to my hospital room and gave me a Baby Shower. We opened adorable clothes and beautiful blankets and started planning.

At night I would talk to the babies and sing silly songs or read books and they would move and kick and flip around. My stomach looked like aliens were in there. I knew they could hear me. I had no doubt that both boys were the smartest babies EVER! I knew they would be ok. They had to be.
 I was finally at 32 weeks. In the home stretch. If they were born at that point there was a high chance they would come out breathing. I felt like I could relax a little bit.

Then one morning Winston came in to tell me that they may have to transfer me to another hospital to deliver because they could not find a pediatric neurosurgeon to be there when Luccio was born. I couldn't leave Winston, my Nurses and the room that had become my safe haven for the past 10 weeks.  There had to be another option. I needed to deliver these babies at "The Mecca," I knew they had the highest level NICU in the state. I had held on for weeks.  I wasn't leaving in the final moments and chancing less than exceptional care for my boys.

Winston coordinated with the neurosurgeon on staff. He said if the hole in the skull was skin covered Luccio could be stabilized at "The Mecca" and then transferred days later if needed to a pediatric surgeon at another hospital. Winston also explained that if there were complications after the birth and Luccio had to be transferred in an emergency I would not be able to go with him.

So that was the goal: stay pregnant as long as possible and pray that the opening in Luccio's skull was skin covered.

The only problem was the surgeon from "The Mecca" was away on vacation for the week and wouldn't be back until the Tuesday after Labor Day.

Well…on the Friday of Labor Day weekend I woke up feeling sick. I decided to lay low for the day and not mention it to the Residents or Winston when they came by on rounds. I was not delivering before that surgeon came back. I had made it to 32 weeks and 5 days. I certainly could make it through the weekend. I did not want to risk delivering and having Luccio transported to a different hospital without me. So I waited out the day and hoped to feel better.

But, late in the afternoon the Cleaning Lady came in and noticed something was wrong. I told her not to spray anything because I was nauseous and had a headache. She ended up telling a Nurse and then all Hell broke loose. My blood pressure was very elevated and it looked like my pre-eclampsia that had been brewing finally spiked. Winston said to call Oz and the grandparents because the babies needed to be delivered immediately.

So through Friday night traffic on a holiday weekend everyone sped their way to the hospital. But, two other emergencies came in and Winston got called away. I was in a panic to think I would have to deliver without him. But, Dr. F had been following my case all the way through and he assured me he would stay with me the entire time and promised to tell me the second Luccio was out if the hole in his head was skin covered. I trusted him.  He did a quick ultrasound and I could see Vincenzo sucking his thumb and Luccio put his hand up and it looked like he was waving. I knew I didn't have a choice. It was time to deliver. So I went into the operating room.

They pulled Vincenzo out first. I held my breath praying he would be ok. I heard him cry and they said he was breathing! I was so thankful.  Two minutes later they pulled Luccio out. His amniotic sac was still in tact so they had to pop it. (I have read that Native Americans think this type of rare occurrence is good luck.) As soon as Dr. F had him out he shouted- it's skin covered!  We all breathed a sigh of relief.

We still had no idea what it would mean in the days to come, but for the immediate moment it meant he could be stabilized and then we could figure out the next step. Luccio was having respiratory distress and had to be put on a vent so they took him to the NICU right away.

Vincenzo weighed 3 pounds 14 oz.  and Luccio weighed 4 pounds and 14 ounces.  Luccio was one of the bigger babies in the NICU.  He was a tough little guy right from the start.

The days, weeks and months that followed included many hospitals and doctors and surgeries and follow ups. But, Luccio trooped on through all of it. He earned the nickname The Bear. He was cuddly and adorable, but feisty. He is the strongest little boy I have ever known. He always had a good attitude and happy smile and the doctors and nurses loved him. He never complained or cried after his surgeries. He developed a bit slower than his peers but still reached all of his milestones like walking, talking and running. He made so much progress and once he took off nothing slowed him down.

Now that he is in First Grade it is becoming more obvious that he is going to have to work harder than most of his peers when it comes to Reading. He struggles with remembering sight words and memorizing things. But, he loves book sand stories and is very creative and inquisitive.

Today he rode his bike without training wheels for the first time!

Luccio is a loving person and brings his Light with him wherever he goes. He is so funny! And quirky! I cannot imagine life without that Little Bear!

 I thank God every single day for all 3 of my beautiful babies.

I am so very grateful that my Bear is not like everyone else. He is his own unique, hilarious self. He had enough strength to get himself into this world and survive brain surgeries and all of his challenges. If it takes him a little while to learn how to read or he breaks into dance more than his friends, so what? I am convinced his amazing soul is what got him this far and I know he will eventually get where he needs to be on his own terms.

1 comment:

  1. Love our Baby Bear. He is such a loving sweet funny as hell lil boy.
    We must never forget all he has gone though and pray that they find a cure for Hydrocephalus.
    He is lucky to have a great Mama Bear