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Kidlets and Coffee Uncategorized Prematurity Awareness Day 2020

Prematurity Awareness Day 2020

It’s that time of year again! A day to bring the ultimate awareness to preemies, their challenges, and their strength.

Premature birth (birth before 37 weeks of pregnancy) and its complications are the #1 cause of death of babies in the United States. Babies who survive premature birth often have long-term health problems, including cerebral palsy, intellectual disabilities, chronic lung disease, blindness and hearing loss. In the United States, about 380,000 babies are born prematurely each year. The preterm birth rate (the percent of babies born before 37 weeks each year) is 9.8 percent in the United States. This means 1 in 10 babies is born too soon. The U.S. preterm birth rate is among the worst of high-resource nations.

March of Dimes

1 in 10 babies are born too soon. 3 of my 4 were born too soon. This means so many things. Some of the challenges my kidlets have faced include:

  • Underdeveloped lungs
    • This led to breathing trouble at birth and during infancy, requiring oxygen for a while, and anytime they get sick with respiratory infections
    • One kidlet has severe asthma that affects her every day life
  • Underdeveloped nervous systems
    • Sensory processing challenges due to being exposed to the outside world before their body was ready
    • Long term, delays in fine and gross motor skills as the nervous system develops from the trunk out to the limbs
    • Years of physical and occupational therapy to teach skills that come naturally to most people
  • Weakened immune systems
    • They are prone to any and every illness
    • The common cold can, and often does, land them in the hospital requiring oxygen therapy and respiratory assistance (suctioning secretions, etc)
  • Overall developmental delays
    • School is a struggle, as the instructions often get jumbled in their minds, or they understand the instructions and find it difficult to translate their thoughts to paper

These are just a few examples of the challenges our kids face. Many children have different struggles, some more severe, some less. Every child is different and prematurity affects them all differently. The one thing they all have in common is the need to battle from Day 1 of their life.

Parents of premature babies face enormous challenges as well. The most difficult thing is to leave the hospital empty handed after giving birth. Facing the unknown of life with a premature baby, especially one who is still in the Neonatal Intensive Care Unity (NICU), is terrifying. Visiting your baby when they are surrounded by beeping machines, wires, stickers, often with breathing machines, feeding tubes, and IV’s sticking out everywhere, is terrifying. For a new preemie parent, not knowing what any of these machines are measuring or why they are beeping, life is overwhelming.

What do you ask? Who do you talk to? What are those nurses and doctors doing with your precious miracle? Why does it take a team of 5 or more medical professionals to simply move your baby into your arms? Why is that machine suddenly beeping? Is everything ok?

The uncertainty, the fear, the nervousness is all unforgettable. Holding your tiny baby for the first time is exciting and nerve-wracking. She’s so tiny! What if I hold her too tight? What if I accidentally pull one of her tubes/wires/etc out? All of these fears and more are coupled with the absolute unbeatable excitement and joy of holding your tiny miracle for the first time.

One would think it becomes easier after the first one. After all, you’ve done this before, right? Wrong. Every premature birth is different. Every premature baby is different. And every preemie parent is different. After the first experience, you learn what questions to ask. You learn what all of those machines and wires are for. You learn which noises to ignore and which ones to react to. The one thing that doesn’t change? The joy of holding your baby for the first time. Sometimes that happens on Day 2, sometimes that happens on Day 30, it is different for everyone.

Our preemies are warriors. They are strong, they are brave, and they have overcome more in their short lives than we can even imagine facing. Our preemies are our heroes. And the craziest part? They don’t know any different! They don’t know what it’s like to not face challenges. They don’t know what it’s like to not back down, even when it seems so hard. This is their life, and they face it head on.

Having a premature baby is scary, and often feels lonely. However, it’s not all doom and gloom. We, as preemie parents, have learned to celebrate the little things. We call them “inchstones” instead of “milestones”. Baby got off oxygen? Yay! No more feeing tube? Outstanding! We stop looking for the big milestones and celebrate everything because we understand just how much work it took to get there.

Preemies are miracles. Preemies are brave. Preemies are strong. Preemies have my heart.

LB at 2 days old, 3 lbs 14 oz
LN at 3 days old, 4 lbs 3 oz
LK at 1 day old, 3 lbs 15 oz

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