I didn’t mean to leave you hanging so long with Evelynn’s Birth Story. If you missed part one, be sure to check it out before continuing reading. The words to follow will be some of the hardest moments to re-live as I share our NICU Story. Maybe that’s why this post has taken awhile…In the midst of the heavy heartache that comes when I look back on these moments, I know they are laced with God’s goodness. It’s those miracles I don’t want to forget, but it never takes away the sorrow of this season. Pediatric stroke is something I never heard of or thought possible, until it became our reality. 

A NICU Story:

It felt like an eternity before Chad came back. He didn’t remember to take his phone with him so I couldn’t reach him and I had no idea what was going on. It was still so soon after my C-Section that I couldn’t get up and walk either. I just laid there waiting and sobbing. I wanted my baby back, I wanted to know she was okay.

Finally, Chad walked in the door. The minute he came in I burst into tears. He rushed over to the bed where I laid and just held me. He held me and I sobbed uncontrollably. He told me over and over she was okay, they were taking care of her, and she would be fine. The NICU nurse came back in to talk. She explained how jaundice she was and the concern with that. They noticed something off with her breathing as well, but her oxygen stats were normal. So they needed to watch closely and see what was going on. They were taking some labs and waiting for results. They brought in a pumping kit for me and told me to start pumping and try my best to get some rest. It was going to take time to run some tests and see what was wrong, so there was nothing I could do right now.

When they left, I sobbed again. I didn’t want to pump, I wanted to feed my baby. I didn’t want to rest, I wanted to be woken up every hour by my hungry baby. This wasn’t how my hospital stay was supposed to be. We were supposed to be soaking up snuggles with our sweet newborn and savoring every moment of our last baby. But by God’s grace I was able to fall asleep. I did have to wake up to pump around 3am, but then I went back to sleep quickly. I truly believe it was God’s grace. I was emotionally exhausted.

NICU Story Day One:

I woke up the next morning around 6am and jolted right up. I was about to ask Chad to run down and check on her, but he had already left. He woke up and went straight to check on our sweet baby girl, so I waited for him to come back. When he got back he showed me a picture of her and said that they told us we could come down around 10 to hold her during her next checks. So we ate breakfast, waited for them to bring up a wheelchair, and then headed down.

This was the beginning of the reality of NICU life. When we got there, they had started her checks, but there was already a team to do some tests on her. She was so jaundice that she had to be under the light constantly. She was only allowed minimal breaks. They would do her cares, run her tests, and stick her back under the light. I couldn’t hold her. I sat next to her rubbed her back, held her hand, and just watched her. It was the worst feeling ever. She looked so sick. She sounded so sick. All I wanted to do was pick her up and tell her she would be okay. But I couldn’t. The NICU runs on a very strict schedule, and especially being a fourth time mom and knowing what I was missing, this was heartbreaking.

Thankfully, that evening I finally had a chance to hold her. She was wrapped in wires and hard to move around, but it didn’t matter to me. I just wanted to hold her. I held her and sang worship of her and prayed with tears streaming down my face. I knew she was so sick, and my heart was just breaking.

NICU Story Day 2:

Thursday was by far our hardest day of all. They had discovered she didn’t have enough red blood cells in her body helping to move oxygen through her. They decided to run an ECHO after that news. That morning the Cardiologist came in to talk to us after they performed the ECHO on Evelynn. Her heart was overworking on one side causing it to undergo a lot of stress. Her heart was structurally perfect, no abnormalities. But for some reason, it wasn’t working. He told us that he would start her on some antibiotics that have very promising outcomes. It works very quickly, restores her heart to function, and then she should be able to wean off of them.

Because of her hearts function, they decided to do an Ultrasound. In the Ultrasound they discovered she had a blood clot. This clot was large and located in her IVC vein. It stretched from above her kidney to just below her heart making it’s location and size extremely dangerous. Due to this blood clot, she would need to be on blood thinners. The consulted with some specialists in some other state who handle this often for the best course of action. They determined they would have to begin giving her shots to try to find a therapeutic level of shots to help dissolve the blood clot. The goal was to dissolve it slowly so that there was no risk of it breaking off and damaging her heart.

I got back to the room and just fell into the chair. I couldn’t believe what was happening. All of this seemed like a bad dream that wouldn’t go away. How did a perfectly healthy pregnancy come out with so many complications? How did a perfect baby have so many issues that I didn’t notice? How did I not know? I was devastated.

A NICU Story: Pediatric Stroke

Because of this news, they did an MRI on her brain to make sure there was no bleeding or clots. This is when they came back and told us our sweet girl had a stroke. I remember listening to those words come out of the Doctors mouth in complete shock. What was happening. My baby had a stroke? My heart broke into a million pieces. This was the most emotional exhausting day.

Thursday was full of so many answers, yet not enough at the same time. When I laid in bed that night to fall asleep, all I could do was cry. I sat there sobbing and the nurse walked in and realizing Chad had fallen asleep, told me she would take me to see Evelynn. She said I NEEDED to go see her. Chad jumped out of bed and said he would take me down. He walked me down, and it turned out Evelynn was having a rough night too. It was like we both needed each other. So I turned on worship, sat by her bed, and just prayed and sang over her. Tears streaming down my face I told my sweet baby girl she needed to get better. I needed her to come home and meet her siblings. I needed her to recover. I asked God to heal her body. This was one of the hardest days of my life and it felt so unreal. Like a worst nightmare come true.

NICU Story Day 3-6:

Many of our days continued like this…I would send Chad down first thing in the morning to check on her and drop off pumped milk. We would eat breakfast, rush down for her cares and pray for a chance to hold her, come back for lunch and meds, and to rest. Back down before dinner, up for dinner and meds, then back down for one last trip again. They continued to remind me that I had just had surgery so I needed to rest, and so did she. It felt so unnatural to be so far away from her only seeing her at certain times during the day, never being able to hold her.

They continued to give her shots, check her blood levels, give her platelets, and she had to have a transfusion during this time too. We were able to help with Cares a few times and it was the only way we could interact with her before she had to get back under the billi-lights. After her stroke, they also needed to perform an EEG on her. So it meant more wires, and longer time not being able to hold her. They ran the EEG for 24 hours and we were grateful to have discovered she had no seizure activity.

On Saturday, day four, I was officially discharged from the hospital. They were gracious enough to let us stay in our room on “hospitality.” This meant we could basically use the room as a free hotel, we would be responsible for our own food, but we could come and go. My official discharge happened after lunch, so we checked on Evelynn once more and decided to head home and visit the older three before returning that night.

Leaving Your Baby at the Hospital

The moment we got in the car and I saw the empty car seat in the back, I lost it again. I knew I was coming back to see her, so I didn’t think it would hurt as much as it did to get in the car. It was so hard to drive away knowing I was leaving my baby behind. I used the drive to gather my thoughts so that I could be fully present with my older babies at home.

My older three were healing. Holding them, seeing them, laughing with them, hugging them…there was something so therapeutic about being around them. We soaked up the time with them before heading back to the hospital for the night.

On Sunday, four days after I had last held her, they finally let me hold her again. Her EEG had finished, they were unhooking her, and I got to hold her! Tears streamed down my face as they placed her on my chest with all her wires. It felt like it had been so long since I felt her little body on mine. This moment is one I will never forget.

NICU Mom Emotions

Being in the NICU was the hardest experience ever. Being a fourth time mom, I don’t think it helped the situation. I knew what I was missing out on. I knew things weren’t supposed to be this way. I knew what a normal baby should do and how they should respond. So it made this entire experience just plain hard.

Handling the strict routines of the NICU is really hard. Having someone tell you when you can and can’t hold your baby is even harder. It feels wrong on so many levels. The NICU is a roller coaster of emotions, sometimes you feel like you are fairing well, and other times you break at the smallest things. If one more thing was added to your plate, you might feel as if you would fall apart all together.

There is a flood of emotions that come with being a NICU mom and walking through this experience. Every day comes with its own victories and challenges. I pretty much could only handle thinking about my baby, and my husband had to take care of me, or I would forget. The emotions were hard to manage, but they needed to be there. They needed to be a part of this journey.

Stay tuned for part three of Evelynn’s NICU Story….