The NICU Experience

This post is very hard for me, very emotional. I stared one of my greatest fears in the face and survived to walk away with a happy ending. Not every precious baby that goes to NICU has parents that can say the same. As most beginnings happen for those who find themselves watching their tiny baby, or babies, fighting for their very lives, my story starts with a very abrupt and traumatic birth story. (See my previous post for that, I won’t repeat that story here.)

When your child is born too early, or even on time or later, and requires medical intervention so that they can survive in the beginning, every emotion a human being is capable of experiencing happens. Except happiness. That comes later, sometimes much, much later. The guilt, anxiety, fear, it all threatens to crush you. You ask questions that there are no answers to. You have to learn to accept that sometimes things just happen that you will never understand. Why did my BP spike so high? Why did my baby not grow properly and measured smaller than she should have? Why did my body fail not only me, but this innocent little baby? I am supposed to be her safe home to grow in until she’s ready to be born safely! You feel like the biggest failure because something happened that you couldn’t control, but it still must be your fault, right? No. You have to accept it and learn to let it go because it’s not just about you anymore. It’s about that tiny miracle clinging to life. You have to forgive yourself. It is not your fault. Sometimes these things just happen, even though you do everything right.

No mother’s first time seeing their baby should be something like this:

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She should never be told that her child almost died before they could take their first breath. She should not ever be looking at her baby for the first time through a thick veil of tears of fear and sadness. She should never have to apologize to her baby for them having to suffer so much at the start of their life.

NICU is traumatic. There’s just absolutely no other way to describe it. You will go through the full range of emotions, sometimes in one day, or the span of a week. You flip back and forth between guilt, fear, sadness, and happiness. There are good days, there are bad days, there are okay days. The sight of your child lying in that isolette, with all the tubes and wires, it will stay with you. The monitors beeping, the alarms sounding, you will never forget that. You will have a crash course in medical terminology. You will devour every piece of information you can find on your child’s medical condition(s). You will become a pro at handling your fragile baby with all of those tubes and wires. You will love that baby so fiercely that it might scare you. You will pray nonstop. You will find faith you never realized you were missing. You will become strong along with your baby. And you’ll probably still be scared, and that’s normal. You will worry about the future for your baby. That fear and worry doesn’t make you weak, it proves how very much you love your child.

There will be days that your baby will look so heartbreakingly sick:

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Those are the hardest days in NICU. Those days will break you down inside. You will carry the weight of the world on your shoulders.

And then…

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There will be days that your child will make a completely hilarious face while you burp them when they can finally take a bottle instead of being fed through a tube. The clouds will part and the warmth of the sun will heal you temporarily. You will lay down that heavy burden weighing you down. You will begin to see the end in sight of this incredible, and incredibly awful, experience.

Hopefully you will have some of the best doctors for your baby, but those NICU nurses? They’re the real rock stars. They will love and take care of your baby as strongly and passionately as you. They will pray for your baby, cry, cheer. They will take time to educate you on anything and everything concerning your child. They will listen to your fears and help ease them. I swear they must have wings hidden under their scrubs, because they are angels of mercy and understanding to help guide you through this journey.

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My beautiful Sadie was truly blessed to have the best care possible. She was born in one hospital and on her fifth day of life was transferred to UK Children’s Hospital in Lexington, KY. Due to being born prematurely, she developed hydrocephaly and IVH (Intraventricular Hemorrhage) Grade 3 on the right side of her brain and Grade 4 on the left. She had a reservoir placed after a blockage occurred in her spine that prevented spinal taps to be done to help relieve the pressure and CSF (cerebrospinal fluid) building up in her brain. This was the temporary solution until she gained enough weight to have her VP shunt (ventriculoperitoneal shunt) placed. She still has the reservoir as a back-up in case the shunt ever fails.

This is the day we were finally able to bring Sadie-girl home:

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Words just aren’t enough to describe the happiness, relief, the overwhelming thankfulness I felt in the moment this picture was taken. I was fighting back tears of overwhelming joy!!! After a long, scary journey full of ups and downs, I was about to place my daughter in her car seat and finally walk out of the hospital with her, instead of leaving her behind.

We were more fortunate than some because in all, she was only in NICU for 54 days. Some are there for shorter periods, some for much longer. Some babies just need a little extra care and help, some need serious intervention. No matter what your NICU experience is, it leaves its mark on you. I still have nightmares about being there with my precious daughter. Those monitors and alarms I mentioned before, I can still hear them. It’s extremely painful for me to look at the pictures and videos we took during that time. The fear and uncertainties I felt then come back to me every time and I cry just as much as I did then.

We were, and are, very blessed to have a strong support system to help us get through this journey. Prayer warriors lifting my Sadie up for healing and fulfillment of God’s will in her life. When I felt so weak and tired of everything, I had some pretty awesome and wonderful people reminding me that this was only temporary, that I could get through this, that Sadie is meant for great things. Bless them, they told me that I was so strong and brave, but I didn’t feel that way at all. Where what strength and bravery I did have left off, God picked me up and helped me carry the burdens too heavy for me to carry alone. Never will I doubt the power of prayer or that miracles do exist, because Sadie is physical proof that prayer works and miracles happen.

My daughter had a rough start to life, only weighing 3 lbs 7.5 oz and measured 15 3/4 inches long. Today she is a little spitfire, wild child giving me a run for my money every day at 7.5 months old. She now weighs 16 lbs and measures in at 25 3/4 inches long. Her adjusted age is about to reach 6 months old on September 13th – this is how old she would be if she were born on my due date and what age we measure her development by.

I can’t get enough of her squishy cheeks and beautiful blue eyes:

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Sadie amazes me every day! My cup truly runs over getting to be her mama. Statistics basically say that she should be a vegetable, or close to it, but she doesn’t let something like that hold her back. She wears an invisible superhero cape. There are still hurdles and obstacles, but we’ve learned to take them one at a time. Life has become infinitely better with this little ray of sunshine around. I fall deeper in love with her every day. I thank God over and over again daily for her. In my eyes, she’s absolutely perfect.

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