What a difference a year makes!

A year ago on March 31st, we were house hunting in LI. I didn’t feel well, but thought it was just anxiety. I knew something was weird, but wanted to believe that everything was ok because all the doctors and everyone in my life said that my feeling like I’m drowning in water or breathless was just “being pregnant”. I didn’t feel this way before with Juliana, but wanted them all to be right.

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That night, it was Passover. I had wanted to cook for your daddy, Juliana, Mema and myself but I just didn’t have the energy. We went to a diner. We laughed because your sister repeatedly said “baby cakes” after Mema said it. I couldn’t eat much and again felt a bit breathless. I went to the bathroom and saw the tinyiest spot. I knew in my heart that you needed me to go to the hospital. 

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This was different from the last time. With Juliana, I was in labor all day, sure that I was fine. I went to work, my mucous plug fell out and I made the students clean the classroom, insisting to everybody that I was fine! All my friends at work told me I was in labor, but I assured them I wasn’t. They said my belly dropped, but I refused to panic. I went home, walked Bailey twice, and stood in the living room chatting with a contractor while my water broke all over the floor. I still showered, shaved, and calmly waited for Mema to come…I met your daddy at the hospital and strolled in to Labor & Delivery calmly like “Hey…so, I think I’m in labor”, as the water was still rushing down my legs an hour and a half later. They didn’t believe me. They said I must have peed in my pants. Lol As soon as they went to check though…“omg, that’s amneotic fluid”….”your contractions are two minutes apart”….”you are not dilated enough…we need to get the baby…” “how are you not in pain?!” as I laughed and laughed…and 2 hours later,  your sister was born. She cried a beautiful cry that stopped my whole world…

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This was different from the last time.

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That night, one year ago, I drove to the ER. Your dad wanted to drive and I wouldn’t let him. I watched the gigantic moon hanging over the buildings as we crossed the Brooklyn Bridge. I tried so hard to remain in control as I did when I went into labor with your sister…but this time, I was scared. I thought something was wrong with me. Between the two of you, we had lost a baby very early on and I blamed my body…my fear was something was wrong with me and causing you to be uncomfortable. I was trying to swallow my panic. I needed to drive so I could be in control…I would get you to the hospital and they would make you safe.

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At the hospital they checked me. They thought I was dehydrated and pumped me with fluids. Daddy and I discussed that we would be late to Easter at Auntie Lisa’s house tomorrow…and I laughed that I could be home watching The Ten Commandments instead. I joked about the moon rising the water in my belly dramatically in that movie…parting the amneotic sea for you…with the theme music playing loudly in my mind…

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They wanted to send us home. We started to get ready and when they went to remove the probes from my belly, your heart rate dropped so we stayed more. This scenario happened 3 more times. Finally, I started to feel a sudden increase of pressure and intensity. Are these contractions? I couldn’t breathe again. I got dizzy. I didn’t say anything to anyone…I didn’t have the chance to… but the machines knew it. A group of doctors and nurses rushed in, put oxygen over my face, turned me to my side and gave me a shot in my leg. I kept telling myself and you that we were ok, but I knew I was losing control of my position as your protector.

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Your daddy and I went over names. We had a few left…James Bernard, Brenden and Matthew. James Bernard was it, we decided. The doctor came in and decided to take us to the OR. Then he changed his mind. Let’s see one more time if we can wait this out. “Oh thank God” your father said, “I don’t want to name him James”. That left us with Brenden (B after my Daddy) and Matthew (M for your daddy/in memory of my friend Michelle/it’s just a strong name we both loved). Brenden Matthew will be his name!

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The doctor finally decided it was go time. He said you would be born at about 9am (the doctor actually was exactly right with this plan). This didn’t feel as light as the first time. I laid down on the operating table after getting a spinal and waited for your daddy. Everyone seemed relaxed…this would be routine…but I was worried. We talked as they started the procedure. The same feeling of freezing cold entered my nervous system, as it did with your sister, so it oddly calmed me down. I knew how it was supposed to go. I get cold, I feel pressure, I wait a few minutes then I will hear a baby cry. The doctors were going to get you out and save you before my body could hurt you. 

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 I look up and see the anesthesiologists face. I asked him, “is everything ok?” He said “Yes, everything is ok don’t you worry”, but his face told me a different story. He looked suddenly, blank. He patted my arm a bit. We heard them say there was so much water…it was overflowing and rushing past your father’s feet, I would later find out. There was counting…for me it was off in a distance as I think I still tried to will everything to be ok. I was sure it was me…I was dying maybe…but I stayed quiet because I just knew if they got you out safely, it would all be ok…

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I think I asked your daddy to talk to me about a vacation we went on to Aruba, but I’m not sure…

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Suddenly a doctor walks over to see us. I knew immediately something was wrong because this didn’t happen last time. Where is the baby? She said “Your son was born 15 minutes ago. He wasn’t responsive and was completely floppy. We needed to intubate him and we need to take him right now…” and I’m not sure what else she said because the wave of emptiness and despair came over me. I lost my son? Another doctor said “do you want to see him?” and they pulled back the divider curtain…and there you were…the back of your jet black head of hair…one arm hanging off the table that they lifted back on to it…I couldn’t see your face…is he breathing? Is he….is he…? “Dad, take a picture for Mom”…your Daddy took your first picture and looked back at me as if he had seen a ghost…everyone was rushing and I was stuck on the table paralyzed. I wasn’t dying like I had thought but were you?! ”Follow the baby” I think I said & he handed me the phone and ran out after you. I looked at your picture and saw my beautiful son…but I didn’t know what I was seeing. You weren’t crying…were you awake? The silence in the room was deafening although the doctors talked around me about going to Chicago…as if nothing happened…I sobbed deeper than I have ever cried and looked at your picture and asked “did he die?” The nurse said “they took him to the NICU”…she didn’t answer my question…that’s not an answer!!…they rolled me from side to side to clean me up…I caught a glimpse of the floor and all I can see is blood and water everywhere…they put down sheets so they wouldn’t slip…

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The last time, when the baby came out the room exploded in congratulations and “welcome to the world, Juliana Caroline!”…they placed your sister in my arms and I couldn’t believe that I could just hold my own baby that I made! They wheeled me to recovery where she did the baby breast crawl and immediately started nursing on her own. It was magical and overwhelming!

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This time, as I was wheeled out, a nurse asked me “what is his name?” “Brenden Matthew” I whispered. “That’s a nice name”, she said. No congratulations. No baby to hold. They wheeled me to recovery. I heard a baby cry across the room and my heart sank deeper because I knew it wasn’t you. I laid there texting with your daddy to find out where you were. He couldn’t get in the room, no one knew what was happening. The doctors came to talk to us and even they were crying. No one knew what went wrong. I was being tested for a million things, it seemed. Your daddy said you were ok many times… but I really believed you were gone. I believed I failed you and saw visions of the plot where your daddy’s family are buried. Your first picture reminded me of what my own father looked like when he had passed away. I thought they were all lying to me and I was confused and broken. Your Daddy had text me while he was with you that when he finally had a moment with you after you were born, he had asked you to open your eyes and you did…but for some reason it didn’t register with me as a positive thing (which it obviously was). I couldn’t think straight. I went to a dark place in my mind that can only be explained as the depths of hell.

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Hours passed. 

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Then, your daddy told me that they would be bringing you to me. You were being transferred to another hospital and the paramedics would bring you to see me. Your Uncle Frankie was with us at this point next to me, as I saw your daddy walking proudly towards me with 2 men wheeling in a isolette (although I didn’t know that word at the time). One of the men saw my face and reached out to me, and I reached out to him….he lifted me up so I could see you (in retrospect, not the best idea after having your abdomen cut open). The box was like a treasure chest and there you were…my little treasure…my golden piece! You looked like a tiny sleeping doll. I called your name probably way too loud and your eyes opened and looked into mine! “You’re alive!?” I gasped. It was like life had escaped me in that OR…when you were born and struggling, I think a part of me died so that you could live…and then there you were, bringing me back to life. Your daddy assured me that you were going to be ok. He said you just needed to get help at Cornell where they could do more for you. He wouldn’t leave your side and would stay with you until I got there too. I was truly shocked back into living and overcome with joy. I kissed you goodbye through the air and laid back down. I felt pain in my middle, but was invincible. My son had lived! My son was still here!! The nurses said it was an Easter miracle…one nurse cried and prayed with me saying she never saw someone come back to life and that seeing me before and after was like a resurrection. 

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The next 120 days + 14 more were intense. We lived for your survival each day…back and forth to the hospital to you…back and forth to home for Juliana.  It was true, my body did cause this…I was the carrier…but your Daddy and I decided that our job was to commit our lives to making your life better. What could we do? At first, you became so sick…I would sing Hallelujah at the top of my lungs each day as the tears fell and I prayed…later to be replaced by First Day Of My Life and even later, Fight Song…just amping me up to be all that I could be for my babies. I stayed up all night researching our disease…meeting strangers who shared this commonality who were incredibly supportive as we made multiple life altering decisions. We watched amazing people save your life in the hospital. Daddy and I learned to become one mind in order to handle our new lives as we brought you home to finally be a family 134 days later. We learned all your cares and machines inside and out. We prepared and oriented Juliana so that when she finally met you, she wasn’t even phased. Her first question was “that’s his trach?” We have fought, we have celebrated and we have truly found the most incredible love for each other in our little family. I never thought I could love your father more than the day I married him…until I saw him love you and your sister (& vice versa)…this year has brought me to a new depth of understanding about what love is…

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One year later from your birth, I can say with confidence that you are my miracle. That day, while frightening, taught me the true meaning of life! A year later, through hell and back…120 days in the NICU…14 days at rehab…through a rare disease diagnosis and other complications you slowly but surely resolved…all the ups and downs and ups…through multiple diagnoses….surgeries and hospital visits…we have seen you get through so many obstacles that they thought impossible…resolving one issue after another…through 24/7 nursing with multiple agencies needed (most have been amazing but we met a few horrible ones – we continue to ensure your BEST care!) and a ton of equipment…through us fighting for early intervention services like crazy (PT, OT, SLT, Feeding, SI, etc…) and seeing your incredible progress, through your amazing sister trying so hard to adjust to all that goes on, loving you, taking care of you, stealing your toys, you fighting back for your toys lol and big sister cuddling with you & kissing you…through it all, you and your sister have made my life so very full…so meaningful…so powerful. I can not thank God enough for allowing me to be your mother. The two of you are my reason for breathing and working so hard. I gave you both life but you both definitely gave me mine. Thank God for you both! 

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& on this day (& always) I do thank God for you, Brenden Matthew! My sweet, smart, funny, loving, strong, brave and amazing son! You have come so far and improved SO much! No one would believe it unless they saw you in real life in the NICU and now! You show me each day what life is really about and I sure do count our blessings often these days! You are Mommy & Daddy’s hero! 

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Happy 1st birthday (tomorrow) and many, many, many, many, many more!!! May God bless you with all the wonderful and amazing things that are possible…with continued good humor, good health, improved heath and success!! You will continue to thrive! You WILL continue to get stronger! I will do everything in my power to always keep you (& your sister) smiling & loving life! Never stop fighting, Brenden Matthew! I love you, my son-shine! Always and forever!

 

Your very first picture -4/1/18

A very recent picture – 3/2019