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Challenge: NICU Parenting

Slow and Steady - HIE

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She is my first born! A sweetheart.

I delivered Annalise at 41 weeks, everything was great. Labor started naturally and progressed well, but during delivery she was deprived of oxygen for too long. The cord was wrapped around her neck twice and she aspirated muconium. She was swept away immediately, lungs suctioned, her life given back. She was not breathing and her Apgar 0 and then 1. We really had NO idea what was in store, actually I didn't even know all of that until later on. We thought she was just going to be taken to get evaluated or something. Later that day the Dr. told us it was so serious, she was the most critical baby in the NICU. What? She has to be exaggerating right? (that's what I was thinking) It was unbelievable. And though she was confident Annalise was going to live, she knew that her life might look very different than most children.

After giving birth, I remember eating my dinner, and resting and wondering about my girl. But honestly I truly had NO idea that it was so serious! I kept thinking, when is she coming back? I want to see her. My husband would go down to the NICU to see her and I was stuck in my bed with third degree tearing and zero expectation because she was my first. He was so emotional and I was confused. After the DR. came back and explained the situation it was just dumbfounding to me. It felt like a nightmare, like it wasn't really happening but it actually was. We were discharged from the hospital without our baby. Sitting in that chair with "its a girl" balloons and gifts, waiting for my man to pick me up, was really hard. I thought everybody was staring at me. I did not want to leave my girl behind. We traveled every day to be with her and everything about it was like being on a rollercoaster. We were able to finally hold her a few days later. It was such a whirlwind! She was diagnosed with Hypoxic Encephelopathy (HIE for short), in regular folk terms that means her brain was deprived of oxygen (for way too long). After learning about blood gas and what an APGAR was, we could catch our breath. (for a moment)
Our sweet girl, only days old, started having seizures and was always quiet and sleepy from a breathing tube and sedation. I can tell you that I never wanted to hear a baby cry so much in my life! It was not normal to sit in a room with a baby that could not really make any sound because of the tube. There were cords all over, racks of medicines that were being pumped into her, tubes for breathing and urine output. I was TERRIFIED to touch her because I thought if I bumped any of those tubes or wires it would kill her. She laid without any clothes, on a cooling pad to protect her organs, my husband turned into a papa bear thinking she was too cold! But honestly, the cooling pad probably saved a lot of her organ functioning.
Her MRI showed extensive damage and we were told she may never walk or talk or... you name it. aka: Brace yourselves.
It was a crushing blow. We just prayed. I prayed for God to heal her and to give us an encouraging day, we totally needed that. And you know what? HE DID. That day, the nurse said.. "she is like a different baby". He did something. She stopped having seizures, she started eating through a feeding tube (instead of fluid from a belly button IV), she was breathing on her own! She was alert! Slow and steady she got better.
After 18 days, we were sent home with this sweet girl, not knowing what her brain was doing, if she could do 'this' or 'that'... No feeding tubes, no monitors... it was scary and awesome all at once. She was so bright and alert, and she still is!
Today, she is about to turn 7! she is miraculously walking and talking and jumping and pedaling her bike! and most people don't notice any lingering effect.
We know she has mild hypotonia and dyscalcula. Her ability to do what is the "norm" is and has always been on a slow and steady upward track. She is not at her age level but she is steadily making gains, slowly but surely!

Some things that were the hardest about being in the NICU (besides obviously our baby being so sick and possibly disabled) were having the feeling like we were alone. I looked around at all of the baby's there, almost all of them were these tiny preemie's, their stories are beautiful and their journey is nonetheless difficult, but I remember thinking... 'my baby should be healthy, she was born on time. none of these other moms relate to what is happening here'. (so I thought), I would scour the wall of "fame" of babies who graduated out of NICU looking to find stories of children who were like mine. I needed to know what I could expect (kind of). I found one. That was very hard for me, because none of the doctors would say what we could expect, they didn't want to give us false hope. And I didn't have another person's story to look at that would encourage me. Another hard thing for me was BREASTFEEDING! Come on ladies, it is real hard! All of these moms who weren't NICU moms were in love with breast feeding! they would say how wonderful it was... such a great bonding experience. WHAT? I thought it was the most dreadful, painful, disappointing experience. In the NICU, you pump! you sit behind a curtain with a pump and a cup of water and a clock. I remember crying because I never realized you don't get very much milk for the amount of yourself that you give. At least not for a few days (or weeks). I am over that now but it really was one of the worst experiences about being in the NICU.
That time we spent there (though much less than most) was forever etched on my heart. It was painful, it was terrifying. It was SO emotional. But it also was amazing on so many levels. One really great thing was, I had no choice but to trust Jesus with my daughter's life. That was good for me. Also, Our NICU is one of the best in the country and our social worker was so amazing. She told us EVERY thing we needed to know, even if we didn't ask. Because we didn't even know what to ask! The nurses were like mothers to me. And the best thing by far about it all is the fact that I can look at another momma who has a baby in the NICU and I can relate! I know she needs me to bring her food! grocery shop for her. clean her house. and give her a hug! Because I have been in those shoes.

I was so grateful to hear that the march of dimes was benefiting from the donations just by me sharing my story, how could I not!? They help NICU families get through what could be the hardest time in their lives and support hospitals to not only save preemie babies lives but also babies, like mine, who have a different journey.

Whatever your story, it is worth sharing! Yours and your baby's journey is not in vain, no matter the outcome. You truly never know who might be going through the same thing.

(Updated November 2019)

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