Our NICU Journey

Two years and one month ago, our baby girl was born on June 24, 2017. We had a beautiful birth experience at home under the care of a midwife. Check out my birth story here.

Two years ago and three weeks ago, our sweet Lilian was admitted into the NICU. Many of you may remember seeing facebook posts with updates. This was by far the most faith stretching and challenging thing I’ve ever walked through. I’ve put off blogging about this because I knew it would take a lot of my emotional energy to remember these series of events. It’s hard to look back at the severity of the situation and recall that our precious girl’s outcome could have been much, much different.

I know there are other Mamas and families that need the hope to keep pressing on. One more day of visiting their little ones, one more pumping session to give your baby the best and seemingly only thing you can physically offer. One more prayer lifted up, one more post shared asking others to join you in interceding on behalf of your baby.

So it’s for all you families who have your little blessings in the NICU, this story is to offer you encouragement that you are not alone, that you and your baby are not forgotten, and there are people who have walked through this journey and come on the other side with a miracle.

Let’s start at the beginning.

The first week of Lillian’s life we were getting the hang of breastfeeding, pushing through having blisters on my nipples, and encouraging her to poop the rest of that meconium out. We visited the midwife for checkups and had her bilirubin tested which was in a normal range for her age of 5 days old.

At day 7, Lillian was not acting like herself. She wasn’t feeding as energetically as she had been. As the day turned into night, she wasn’t eating at her usually 2 hour mark. When she refused to eat at 3 hours, I was concerned and called the pediatrician and the midwife. The pediatrician asked if she had a temperature and to check her breathing. He said if she went to the four hour mark without eating to take her to the Emergency room.

Our thermometer’s batteries were dead- note to future moms, make sure your first aid kit is up to date! My husband noticed her breathing was more labored, but I am SO BAD at being able to tell these things, mostly because I wanted to believe the best. But also, why I pursued a teaching degree verses a nursing degree.

At the four hour mark, we rushed to the hospital. My mom and sister came to stay the night with our son. I couldn’t shake the mama’s instinct that we needed to go to the ER, but then also kept thinking, “I must be overreacting, she’s fine, right?”

When we got to the Children’s ER at St. Mary’s and they processed her, they proceeded to run a series of tests. I kept thinking, “She needs fluids, she’s been without fluids for too long now!” The ER doctor was super kind and communicated that she was really, really sick. She told me that Lillian’s way of communicating something was wrong was by not eating.  I was shocked, as I thought this would be an easy fix and we’d be home before the sun was up. She spewed statistics like high white blood cell count and needing our permission for a spinal tap.

All the while, my breasts are large and needing to nurse. Thank God for the one ER nurse who gave me a hand pump to bring some relief. In the early hours of the next morning, Lillian was transferred to the NICU where they finally put her on an IV for some fluids. We were shown the process of “scrubbing in” which required two minutes of using a fresh scour pad and hot water each time before entering the NICU. I was also kindly shown to the “pumping room” where I was able to pump milk for Lillian to drink later.

More tests were to be run, blood cultures were taken, and she was put on two antibiotics to begin fighting off whatever this was. We had to wait a few days for the cultures to come back with the results. At this point she was jaundice for being so long without fluids, so they had her put under the bilirubin light.

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Halfway through that day, we decided to go home and get some sleep. We had been up for over 24 hours and were exhausted. Lillian was stable enough and we would return that night.

Day 3 of Lillian being there she was moved from level 2 to level 3. I will never forget the how the nurse communicated with me not to touch her and that I was not to get in her way. She spoke kindly, truthfully, and firmly. Lillian was in a much more critical state and she showed me her coloring and breathing that were more labored. It was around that time that we were given the results from the cultures. Lillian had contracted Group Beta Strep which was in her spinal fluid, so spinal meningitis. My sister who is a NICU nurse was a godsend as she explained everything to us in terms we could understand. When I asked how bad that was, she said, “That was the one thing I was hoping it wasn’t.”

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Mamas, words cannot express how hard this was. I remember leaving that day feeling so discouraged and borderline depressed. “This is too hard,” I thought. “I don’t know if I can do this.” I remember forcing myself to eat meals those days, attempting to take care of myself. My husband stepped up to the plate. His faith did not waver. When it got hard for me to be there that day, he came by her bedside in the hospital and sang and spoke scripture of her. He commanded the infection to leave in the name of Jesus.

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That same day, my dear friend Amie texted me asking, “Christina are you taking your placenta pills? I think Lillian might be getting the GBS through your milk.” She sent me this article about a mom who had taken her placenta pills, the child got GBS, went to the NICU and got better, and then contracted it again. The connection was the placenta picked up on the infection.

Now this is a theory, but my instinct says this is exactly what happened. I took my first placenta pill 24 hours before Lillian went into the NICU. The day she got moved from level 2 to level 3, I had taken 2 placenta pills that morning. When I went home I dumped those pills directly in the trash just to be safe. In hindsight, I wish I would have kept them so the lab would have tested them. When they tested my milk that same day, there were traces of GBS in it. I was forbidden to breastfeed until my milk was cleared. A few days later, after the pills were no longer in my system, I was good to go with breastfeeding again.

When I was originally tested for GBS, I tested negative. I’ll do a future post on GBS, but Mamas, I encourage you to thoroughly do your research on this and placenta encapsulation. I was a huge advocate for it, and am still not against it, but my experience would cause me to refrain from it in the future.

Getting back on track with our story, Lillian was eventually moved from level 3 back to level 2 once more stable, and it was a marathon of waiting patiently for the 21 days of antibiotics to be administered. During this time a PICU was put in, x-rays were taken, 2 more spinal taps done, and so many other things that are a crunchy mama’s worst nightmare. There was grace in this process though. I firmly believe that God healed my daughter. But I also believe that He guided me to take her to the hospital and used modern medicine to aid in her healing process.

I just want you to understand a little bit more how serious this situation was. When I reminisce with my sister the NICU nurse, she reiterates, “Beans (she calls me), if you would have waited one hour longer, the outcome could have been different. Lillian’s quality of life could have been altered or she could have died.” Trust that Mama’s instinct, ladies. God gave us it for a reason!

We basically lived at St. Mary’s. I did come home each night to sleep, pumping at night, but was there all day long and Derek would come back at night to bottle feed her breastmilk. 

How did we get through? The support of our family, friends, and local church was amazing. We had people who donated money, breast pumps, provided meals, watched our son, sent encouraging texts, prayed, and visited us and Lillian in the hospital. We could not have made it through that valley without them! A big shout out to all you who cheered us on, we love you and are so thankful for you!

The NICU is a special and fragile place, the doctors and nurses there have a high calling to care for these little ones. I am forever grateful for the wisdom and kindness of the staff at St. Mary’s NICU.

Two years ago on this day our baby girl was released from the NICU. What a joyous celebration it was!

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The past two years have been filled with follow up appointments to specialists such as neurologists, infectious disease doctors, audiologists, and physical therapists.

Today, Lillian Melody is a passionate, friendly, loving, joy and delight! We celebrate the miracle and the beautiful pure song she is.

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What about you Mama? Do you have a NICU experience you want to share? What’s been the most challenging thing you’ve walked through?

6 thoughts on “Our NICU Journey

  1. To my dear Christina, Derek, Aiden and Lillian Melody a/k/a My Favorite Four, I to have been reliving this frightful time with you, because Facebook has been sharing all the memory Posts on my Facebook page! There has NEVER been a day since this happened that when I pray throughout the day I ALWAYS thank GOD and our Lord Jesus Christ for giving my beautiful Great-Granddaughter the right Doctors and Nurses during this critical time and that now 2 years later she is a beautiful, healthy, smart, talented and loving little girl…and most of all for me she knows her Great-Grandmother and calls me Dorothy!!! I think you were wise to share this experience with others and give them hope! Much Love and Blessings, Grandma Dorothy

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  2. Lillian Is our precious granddaughter and a Miracle. She is pure joy and I love how she loves life and how her smile lights up the room when she walks in. God has been good to our family!

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  3. Christina! I’ve always thought you were brave, and this is an example of that incredible bravery, yes, and trust in God. You and Derek are truly special people. You’re love for God, your children and family is so pure. We love you so much!

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