Dad's Entry. The life of a NICU Parent

Hello everyone. Thank you all for your prayers and support. Our son has come a long way and he is almost there, but not quite yet. I was driving on my way back from seeing my son Nick, and was thinking about my day and yet once again, "Where did it go?" Never did I think when my wife got pregnant that this would be the outcome. Everyday is an adventure, and a challenge. I love my son so dearly, and he always lifts me up no matter how bad of a day I am having. He is the reason I give 200% in everything I do. For those of you just starting in the life of being a NICU parent, or if you were blessed with a healthy full term baby, welcome to a glimpse of what being a NICU parent is all about. "It's a crazy life, but it's our life."

My wife and I both work and have hectic schedules, not counting the NICU Life. My wife is an office manager for a non-profit, and I am a Bar Manager for a Corporate Chain Sports Bar. We own a home, 2 cars, pets, careers, family, and anything else life throws at us. My wife has been taken captive by the breast pump. Every 2 hours she has to pump milk for Nick. Milk that is crucial for Nick's success for a healthy life. Everything we do is centered around her pumping schedule, that is when we have the luxury to actually see each other. Corinne works a 9-5 gig, and I work all sorts of hours. The bar business does not close at 5pm, it begins. That is just the tip of the iceberg.

On an average day, the first thing my wife does is call about Nick. Then she immediately gets to doing her first pump. 30mins of pumping then 5 mins of clean up. This is just 1 of the 7 pumps she has to do everyday. Then she takes a shower, deals with traffic, gets to work, then immediately pumps again, handles the day to day operations, calls to make sure insurance for Nick is processing correctly, which is always a headache. Around 4:30 Corinne Leaves and goes straight to the hospital to spend time with Nick til 7pm. That is when shift change is and NO ONE is allowed to visit due to information being passed about the babies. 7:30 she gets home, pumps again, cooks dinner, and updates Nick's Blog, pumps again, and maybe if there is time- relax, which is rare. If we are lucky I am not working a night shift, and maybe we can spend time together.

On MY average day, I get up, entertain the dogs, get started on getting the house ready for NIck, check my E-mails, plan my conference calls for work, checks my inventory number from the previous night, (If I did not work that night), Set a list of to-dos and get going with my day. TIME IS ALWAYS A FACTOR. Then go to see Nick, if time permits. There are times I am unable to see Nick due to my crazy schedule. I won't go into detail about my job, because it is too lengthy.

That is just a glimpse of what my wife and I do day-to-day.

Our boy Nick has been a champ through all this. 5 major surgeries, 1 very close call, I mean close. He had 72 hours to pee or we would determine whether to let him live or die. He peed on the third day, so we were fortunate. He has no peripheral vision due to a ROP, has a shunt in his head to drain the excess fluid from his brain that if left alone would cause severe brain damage, intestinal problems, chronic lung disease, is not taking the bottle like he should so he might have to get a G-tube in him. A g-tube is a tube that sticks out of his body that allows us to feed him directly into his stomach, because he is not eating enough. That is the base of what he has been through, but that is far from the end.

When he comes home he will be on oxygen, and have all sorts of crazy monitors to monitor his breathing, heart, and everything else. Sort of like a Mini-NICU in our home. He will be QUARANTINED 6 Months out of the year because of his and overall weak immune system. (In a nutshell). Basically he can not go out during the cold weather months or he could get very sick and die. Did I mention all of his physical therapy appointments, speech therapy, check ups, in home visits, and an array of other things that can happen. You thought we were busy now, wait til he comes home. WOW.

That is just a glimpse of what a NICU parent deals with everyday. For those of you parents new to the NICU, YOU ARE NOT ALONE. You'd be amazed how well you adapt when it all comes at you at 100MPH. The only thing you need to remember is that your child needs you now more than anything, and you need to show love, support, and never, I mean NEVER, EVER, give up hope.

To the parents with healthy children, consider yourselves the fortunate ones. I would never wish the hell my wife and I went through on anyone. Every time you look at your child, or children, just know no matter how much they test your patience, you never had to experience the stress, the hell, the tears, the hours of prayers, the loss of hope, sleep, and appetite that a NICU parent deals with everyday. You are truly lucky.

Oh, my son is the best looking, and best overall to ever grace the face of the Earth. If you disagree, then just know this.....I am right and you are wrong. HA HA HA HA HA HA HA HA HA!!!!!!!!

It's a crazy life, but it's our life.

Thank you Angie and Beth,(The best NICU Nurses Ever) for helping us to feel human, and being with us every step of the way.

Mark