Early Start
I don’t want to spoil the ending for you, but after an incredibly early entry into the world at twenty five weeks gestation and less than two pounds, Madelynn June now takes up more space in our house than the other three of us combined. For the last four years we have been astounded by her strength and dazed by her resilience. Her personality is huge, her frustrations are many, and her laughter is as loud as her cry.
Excerpt from Refuel Your Wait.
“On November 3rd 2015, a beautiful rare southern fall morning, I received a phone call about an adoption opportunity for our family. My heart leapt as the social worker explained that the expectant parents of a baby born that morning were making an adoption plan, had chosen our profile, and wanted to meet us. My heart skipped as the social worker informed me of the baby’s life-threatening prematurity and unknown future health conditions. The baby was born at twenty-five weeks gestation and weighed one pound eight ounces. She was born breathing on her own but quickly had to be intubated for oxygen assistance. She was stable, but she faced many unforeseen risks and would likely be hospitalized for months.”
Setting the Scene
The logistical challenges of parenting an eighteen month old toddler and a medically fragile baby in the NICU for 100 days could break even the most resilient among us. The hospital was thirty five minutes from our house without traffic and my husband worked thirty five minutes in the opposite direction of the hospital. Children under the age of twelve were not allowed in the NICU and I was the fulltime caretaker of our toddler without many childcare options. As you can imagine, scheduling our days and our visits with our newborn daughter were quite interesting.
Give Us All the Updates
In the first weeks of our daughter’s life, we hunted for as much information as we could about prematurity and the long term health effects. We were at the hospital for every allowable visiting hour and when we were not there we called every four hours for an update. We wanted to know how many milliliters she drank, her oxygen saturation, and her bloodwork results. We spent hours at her bedside staring at her paper thin skin and boney limbs until we were finally allowed to hold her when she was three weeks old. My husband and I entertained our toddler by taking turns exploring the hospital grounds while the other spent time with Madelynn.
Settling In
After about 4 weeks into our daughter’s stay, we settled into a rhythm and routine that made NICU life not only survivable but also a sweet time of bonding with our teeny tiny but rapidly growing daughter. We were able to endure the long stay by creating a plan that would carry us through those difficult three months. My husband and I made a difficult decision to visit our daughter on alternate days. And while the days I did not see her were mentally hard, that break in routine brought me rest and peace.
Tips to Conquer the Long NICU Stay
I believe these tips could benefit families with a baby in the NICU or any family facing a challenge that has interrupted their normal routine.
Have Faith– As you spend time with your baby, you will begin to learn his/her needs and can advocate for them. However, you should know that the fully trained and educated staff in the NICU is also advocating and caring for your baby. Their number one goal is to have that baby survive and thrive and go home with you as soon as the baby is ready.
Manage Fear–Although it seems like you are going to break your baby with every gentle touch, please let me assure you that NICU babies are the strongest, most fearless, resilient babies that exist. So get in there and change that miniscule diaper, hold them tight to your chest and bathe them in that slippery little tub.
Use Prayer– If you don’t know how to pray– learn. There will be daily health reports and moments that leave you with absolutely no control over the situation. The only way to seek peace in these moments is to release control and pray.
Practice Quiet– When you are visiting with your baby, make sure to spend “skin to skin” time with them as soon as it is allowed and as often as possible. Your home will have many distractions so take this time to be fully immersed in your baby and their needs instead of the chores you are not getting done.
Improve Focus– Tune out the opinions of other people who do not have experience with the NICU. Contrary to popular belief, you do not need to research every possible health scenario of a premature baby to be prepared to care for one. Sometimes knowledge is power and sometimes knowledge is paralyzing.
Take Breaks– Take a break! The NICU is a very loud place with ongoing alarms that can make you crazy. Spending unlimited time at your baby's bedside will cause your mental and physical health to suffer. Take advantage of this time in which a fully trained, educated and attentive team is caring for your baby.
You are Stronger Than You Think
Before we survived the one hundred day stay in the NICU we survived a fourteen day stay in the NICU. In 2013, our oldest daughter was born at thirty four weeks and her two week stay in the NICU seemed unbearable to us at the time. I have a vivid memory from one of my very first visits to the NICU. I was scrubbing in at the washing station and I overheard another Mom telling her story. She was overjoyed that her daughter was being discharged after ninety days in the NICU. I congratulated her and as she walked away I felt my knees go weak. Ninety days?! I took in a sharp breathe and thought to myself, I could never survive that!