Hello beautiful people!
Today I asked a very special person to share her Joe Dimaggio Hospital NICU experience with me and my readers. It’s not an easy story to tell but it’s something that’s not talked about much– and at times, hidden. Today, I am sharing Stephanie’s story in hope that at least one mama reads it and says, I’m not alone.
I met Stephanie over 6 years ago and I have been photographing her every single year. My favorite part of this job is the friendships I’ve made and Stephanie has always included me in everything! When I found out Stephanie was pregnant, I was probably one of the first to know – and I was already thinking of ideas, and of course including her puppies like we always do!
I remember texting Stephanie to see how she was feeling and how far along she was. That’s when I found out what she and her husband Thomas were going through!
On June 20, 2016, around 7 am in the morning I started to feel contractions and I was taken to the emergency room. I was only 24 weeks and 2 days pregnant. All I could think was it’s not time yet, my baby is not ready, she’s too small, how is she going to survive if I have her right now?
In the emergency room, they did everything possible to stop contractions and delivery. Nothing worked…my daughter wanted to come out! One doctor came inside my room her name was Olga, I will never forget her words; she told me that Isabella was going to come today via C-section. She said that my daughter was very small and her chances to survive the delivery were 50%. If she survives, she had a big chance of suffering bleeding in the brain as well as brain damage and that in the future it could cause her some kind of disability. I was destroyed, I had a perfectly normal pregnancy until that day. I felt so guilty because I couldn’t keep her safe in my belly anymore and all I could think was if something were to happen, it would be my fault because I couldn’t protect her anymore.
At 7:29 pm Isabella was born via C-section. I couldn’t have her by natural birth like I always wanted, I couldn’t hold her after she was born or kiss her forehead, I couldn’t grab her hand or rub her head I couldn’t hear her crying and I couldn’t breastfeed her. All I did was look at her from far away and she had all kind of tubes and IVs. My newborn baby was fighting for her life and I was in the bed without the possibility of doing anything to help her. They took her out of the room and the doctor approached me and told me that she was stable but in critical condition. He also told me that one of the nurses was able to take a picture of her for me and then he left.
When I opened the envelope to see the picture I was in shock, I couldn’t stop crying. My baby was born at 1 pound 13 oz and 13 inches. Her skin was really red and dark, you could see all her veins trough her skin, she was still covered with hair (lanugo), and she was intubated and had a huge IV in her leg and both of her hands. I was relieved that she was alive but at the same time there was a weight of sadness in my heart to see her like that. She was supposed to be in my belly for another 4 months and now she was out in the world trying to survive. They transferred Isabella to a grade 3 NICU at Joe DiMaggio hospital. We spent 149 days there, the most terrifying time of our lives. The NICU was a roller coaster ride, full of ups and downs. One minute everything was ok and the next one you were afraid to death -literally. The worst part was when I had to go home hoping that my baby girl makes it through the night. I cannot tell you how many times I had to say good bye to Isabella thinking it might be the last time I was going to see her. We had to take one day at the time, progress was very slow, it was like Isabella was taking one step forward and 2 steps back every single time.
During her time at the Joe Dimaggio Hospital NICU Isabella had a chest tube to drain some liquid from her lungs, she had PDA ligation (heart surgery), she battled 2 infections, pneumonia, both of her lungs collapsed, she had multiple blood transfusions and she needed eye injections because she was developing ROP disease which could cause her to end up blind. She was intubated for about 2 months and needed high levels of oxygen, then she had CPAP for about a month and a half and finally she moved to a high flow cannula. She then developed chronic lung disease. Everything happened so fast that I was in shock and I think I’m still in shock. I had no time to get depressed, my baby needed me, my baby needed me to be strong and the only time I dared to cry was when I wasn’t around my baby girl.
I had to be strong for her and also for the rest of the family. I didn’t want anyone to see me sad I didn’t want anybody to worry about me or the baby being in critical condition. I only wanted positive thoughts, good vibes, and good energy. People would constantly as me how I was doing and my answer was always “fine”. I always tried to smile and be strong – but I was destroyed and the only thing that kept me going was seeing my baby fighting for her life. The only thing that kept me going was the idea that one day I was going to be able to finally hold her.
When Isabella was 4 weeks old I held her for the first time. I was so excited but scared at the same time, she was so tiny and I felt like I could hurt her. As a NICU parent, I celebrated things like her first tiny poop, the first time I gave her milk through her IV – it was only 2 ml every 6 hours. The first time I was able to change her diaper, after 2 months Isabella wore her first outfit. The first time I heard her crying was after almost 2 months of being intubated. So many little things that people might sometimes take for granted, for me, it was a breath of fresh air.
People would always ask me what I needed it and I will always reply with “prayers”. If you want to help in some way just pray for my baby. I truly believe in miracles and my baby is definitely a miracle. She never had bleeding of the brain which for her gestational age, it’s unheard of! After her heart surgery, thankfully she hasn’t had any other issues and her heart is perfectly fine now. Her lungs are getting stronger every day and they are almost 100% healed.
Today Isabella is 5 months 12 days but only 1 month 3 weeks adjusted age. She weights more than 11 pounds and she is a healthy baby. She came home after 149 days of fighting for her life and she is just perfectly fine. We still follow up with all kind of specialists to make sure that she keeps going on the right path and thank God everything is great with my little miracle. I thank my angels at Joe DiMaggio hospital and God every single day that I wake up and get to hold my baby at our little home.
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