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Challenge: NICU Parenting

The biggest baby in the NICU💚

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1/31/01 at 0321 this beautiful 10lb baby boy snuck into this world so very quitetly. He cried out once to announce his presence, was wrapped up to bring to me and be cheek to cheek and then whisked away to NICU with a swirl of talk and medical jargon ripping the joy of our sons birth out from under us. He was transported to another hospital across town and I couldn't go with him as I'd had a c-section, I was heartbroken. They brought him to me to see briefly before transport, with information as to why being scant. We found out Charles John-Michael (CJ) had hydrocephalus and needed a shunt...his very first surgery Mommy wasn't there, but Daddy and grandparents were. I was finally released and made a bee line across town not caring about needing anything for myself, I just wanted to lay eyes on my sweet son other than pictures. Thinking this was all going to be ok and we would be home soon. This wasn't the case. The doctors said he would need additional surgery in Houston and was waiting on consults with neurosurgeons from Houston, New York and Paris! I was overwhelmed, looking around I saw micro preemies and a multitude of machines,monitors and nurses. I look at CJ as his toes curl over the edge of the isolette, he was huge compared to his teeny tiny neighbors, but his life hung in the balance just as theirs did. He had an arterial venous mass in his brain that needed to be occluded. He and I flew to Houston, while my Mom took a flight to meet us out there. My husband was in the middle of the police academy and couldn't go. It was when we got to Texas Children's Hospital that any shred of hope I had left of taking CJ home was tested. Instruments used for the surgery weren't designed with an infant in mind, all of his diagnoses at this point were stacked against him. We were told to buy him an outfit wether he went home in my arms or otherwise. My mom and I bawled through Target looking for something for CJ ( oh, we were told We were expecting a all the clothes I had were for a tiny baby girl..not practically a toddler boy lol) we were warned that CJ may not survive the surgery, but there were no other options, he would die without it. I can't tell you what an impact the NICU nurses and staff had on us. They graciously guided my foggy and heartbroken mind through getting his outfit to having him baptized prior to surgery. His surgery was an 8 hour mental battle for us. I remember running back to the NICU from the surgery seeing my pale little baby hooked up to everything you could imagine in that incubator....I Literally felt like the floor was coming out from under me...the nurse steadied me and gave me some crackers and juice as I hadn't eaten since early that morning. With the amazing nurses and doctors caring for him CJ flourished, had lost weight , but was doing well. We were sent back to El Paso with an overwhelming amount of medications, doctors orders, referrals follow ups and fear. I was scared to death to leave the NICU...that was our safe place, how was I going to do this? Weighing pampers, giving injections etc...I cried for both excitement and fear! The NICU at TCH gave us their number to call whenever we had questions. We were told to enjoy our son as he probably wouldn't live much longer than a year. They told us that he wouldn't walk,talk, see or show emotion. With cerebral Palsy, he doesn't walk, he is non verbal, but is very clear about how he feels about things. He is blind and has multiple endocrine related diagnoses, one being Diabetes Insipidus which we battle on a daily basis. CJ is our Gladiator, he is 16 and is doing well. He's had a rough road with more hospital visits and surgeries than I would've liked. We had no warning about his condition prior to birth, pregnancy was perfect, I took all vitamins and ate well. I of course questioned everything I did. I didn't do anything, and one of the things that one of the nurses told me in the very beginning was "there is an invisible sign posted up front that says NO GUILT ALLOWED, and that coming into the NICU with positive attitude helped not just us but the other parents and babies". I've always kept that in my heart, because it's been a long road. A little over a year and a half later his baby sister was born and wasn't producing serfactant ( a lubrication that helps with lung expansion) and became septic. We were once again faced with possible loss of our baby girl. I went to the NICU in a panic and was reminded about the invisible sign. The neonatologist said to me.. " only God can give you 100% that she will go home healthy, I can give you 99%."Shelby spent 3 weeks in the NICU and is now a vibrant beautiful 15 year old that is an amazing sister to her big brother. CJ is my Gladiator, he's been through so much and each time he comes out of it with that beautiful smile. Nothing is ever guaranteed, we enjoy him and all,he has to give everyday. He wouldn't be here today without all of the NICU nurses, neonatologists, neuro and endo staff. It inspired me to become a nurse and I'm branching out to NICU. I currently do pediatric home health and help those parents transition from NICU to home with less fear as much as I can. Even 16 almost 17 years later, everything said to me and the care given to both CJ, Shelby and myself stays fresh in my mind. The pain and heartache memories are still vivid, as most traumatic events will do. I'm glad to see this here, and to see there are more support systems being implemented as it is important to recognize this traumatic event. Hardly anyone plans for this, some know in advance what they may be facing, but it still is a traumatic event. Thank you for providing an amazing forum forum and for helping babies across the nation!

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