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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My Birth Story – Full of Surprises

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This was the last belly picture I took before giving birth. Honestly, had I known how this ended, I would have taken a lot more pictures.

On January 29th of this year my daughter was born seven weeks early via emergency c-section. Such a tiny, helpless, beautiful creation. She’s the thing that I am most proud of in my life.

The Birth Story:

I had gone to Lexington for another ultrasound on January 29th at 11:15am to check on Sadie-girl’s two vessel umbilical cord and make sure that she was still doing okay with it. Looking back now, I still can’t believe how fast everything went into motion and how quickly I went from mama-to-be to a full-fledged Mama in the course of 4 hours and 8 minutes.

The Timeline of Events:

•11am: Arrived at the clinic for my appointment.

•11:15am: Called back to take my vitals and do the ultrasound.

At this point, I found out that in just one week I had gained over 15 lbs. Through the shock, I knew something was not right and had a bad feeling about this visit. Then they took my blood pressure and couldn’t get a reading at all the first three attempts. On the 4th attempt they finally got a reading of 109/195!!! I was panicking because things had just gone from bad to worse.

The ultrasound wasn’t much better. I always asked first thing how she was doing and usually the tech would quickly assure us that she was doing fine or great, but all I got this time was, “Uhhh…..I’ll have to let the doctor see this.” Wait, what? What’s going on? Why are you not telling me that my daughter is fine and everything looks good? What’s going on?! My thoughts were pretty panicked and I had thought I spoke out loud, but my husband later told me that I just laid there looking scared to death and starting to cry.

•Approximately 11:30am: By this time the doctor had been informed of my unusual weight gain and extremely high BP and came to watch my ultrasound. Within a few minutes my husband and I were informed that our daughter would be coming sooner than planned. I was going to be admitted immediately for observation until I was officially 34 weeks and then I would be induced or if needed, I would have an emergency c-section.

A wheelchair appeared and I was whisked upstairs to Labor & Delivery to be placed on a fetal monitor and after they had me change into the gowns, the painful IV women have to endure being placed for delivering a tiny human. Seriously, that thing hurt like the dickens! I’ve had plenty of IVs in my 32 years, I’ve sat for seven tattoos so far and combined, all of that didn’t hurt nearly as much as getting this IV! I actually still have a tiny white dot of a scar on my hand from it, one of many battle wounds I carry from this experience.

While they were settling me in the room, there were doctors and nurses galore who all fought for my attention to answer questions that made my head swim. Seriously, I can’t tell you with any accuracy how many there were, so “a lot” will have to suffice.

The next thing we know, they’re bringing in the anesthesiologist to talk to me and tossing the standard husband OR gear (hat, mask, gown and shoe covers) to Mr. G telling him he has to put those on if he’s going with me into the delivery OR. Naturally we’re confused because we were told that it would be 2-3 days and now all of a sudden it’s happening right now! I’m still getting used to Sadie coming in a few days and now I’m being told that she’s in distress and has to come NOW! Scared and confused about covers it at that point. I’m being told that the natural birth I’d envisioned wasn’t happening, the two months we had left to finish preparing for our daughter’s arrival was gone, and we were going to be parents in a half hour or so and time was of the essence. For the first time in 3 hours my husband and I were alone for a few minutes while they rushed off to prepare for my emergency c-section and I’m panicking BIG time! I wasn’t ready. I was scared. I was worried. My baby was in distress and I’m about to face major surgery to give her life if she survives. We were later told that if they’d waited any longer, our daughter wouldn’t have made it, just one more day and she would have been stillborn.

To think, an ultrasound appointment saved my daughter’s life. If not for that, I wouldn’t have this amazing little human that I created in love with my husband who has taught me everything I never realized I didn’t know about life.

The nurses and doctors came back and whisked me off to the operating room, alone, because my husband had to wait outside until after they gave me the epidural I never wanted and strapped me down to the operating table. Sitting there on the edge of the bed, hugging a pillow while getting a huge needle inserted into my spine that made me almost come off the table and a strange older nurse standing in front of me for comfort and support, a million thoughts racing through my mind, all about my baby and if she will be okay, I finally allowed myself a few last tears and then scrambled onto the operating table while feeling my whole body go numb from the neck down quickly.

I watched them place the tent, strap my arms down out of the way and then my husband was there at my side, softly caressing my forehead and whispering words of comfort. I watched him grab my right hand but never felt it, which is a very strange sensation in itself. I had on my brave face and said something about this being a change in plan but it was for the best, while inside I was a scared little girl that was screaming and crying and wanted her own mommy.

Then I have a nurse asking me if I’ve ever thrown up laying flat and I’m like, “Huh? What do you mean?” And she says, “Oh, you’ll see.” ‘Kay…..that sounds completely ominous and frightening. A little bit later I found out why. I’ve been laying there, no clue that they’ve started with a vertical incision (not the lovely “bikini cut” most women get today) because my daughter was laying so low that it was the only way to get her out safely. Next thing I know it feels like someone is standing on top of me with a giant plunger trying to pull my insides out. Later my husband confirmed that I wasn’t far off the mark actually, that a man pushed down on me so fiercely he thought everything would come spilling out of me. Just thinking about it brings back the most intense urge to vomit I have ever experienced and I couldn’t, I ended up quietly coughing and gagging while trying not to move so that I didn’t cause the doctors any trouble. At this point my husband held up his phone and just blindly took a picture, not realizing that he was catching our daughter’s entry into the world.

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January 29, 2016 at 3:23pm, our little Sadie Faith was born due to HELLP syndrome and Intrauterine Growth Restriction, or IUGR, weighing 3 lbs 7.5 oz and 15 3/4 inches. Her skin was tinged so purple and blue and she didn’t make a peep. At that moment I didn’t know that it would be until her 3rd day of life before I heard her cry for the first time! The team of special doctors and nurses for her were on hand and immediately took her off to somewhere behind and to the left of me to clean her up and start working on her. She failed the Apgar for the first few minutes of life and they thought they were going to lose her. Meanwhile, my husband is watching the doctor cut off a fibroid roughly the size of a deck of cards from my uterus and sew up my uterus. He says it looked like fishing line they were using on me. lol He watched, completely fascinated, while they finished working on me. For him this is huge. He nearly passed out several years ago when he watched a nurse insert an IV in my arm for some antibiotics I had to get after my gallbladder surgery.

Then a nurse stepped up to him and asked if he wanted to see our daughter. I told him to go and make sure that she was okay because I still hadn’t heard her cry and I was worried. At this point, the anesthesiologist had given me a healthy dose of morphine, so I was pretty much out of it and barely lucid. I blinked and he was gone.

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Blinked again, or so I thought I’d actually fallen asleep, and he was back. Groggily I asked him how she was doing and how beautiful she was, but he wouldn’t say anything. At the time, I just didn’t notice. Then the nurse called him back over to ask if he wanted to go with Sadie because they were about to take her off to NICU. He came back to ask if I would be okay if he did and I told him to go and I would see him back in my room. While this short exchange happened, they were already taking her out of the room. When he turned back to go with her, she had already been whisked away. By that point they had been working on Sadie to stabilize her for 48 minutes. The importance of the fourth picture where her little eye is open is that up until they called my husband over, she had shown no response to anything they’d done. She didn’t cry, fight, open her eyes, nothing. Again, he was blindly taking pictures over the shoulders of the team working on her. He told me later that he was scared to death when he first saw her laying there so still, barely breathing until the ventilator took over. Then he just said, “Hey baby, how are you doing?” Sadie turned her head from her left to her right, towards his voice, and cracked open her right eye and stared towards where he was standing. It was the first response she’d shown to anything or anyone, after 43 minutes since they’d pulled her out of me.