Hello Monday! Welcome back to another Micro Preemie Monday. I’m so glad you’re here to read another inspiring story.
Today, we meet Killian, as told by his Mom, Bethany. I will explain a few terms at the end, marked with an *
1. Tell us about your baby.
Our feisty little miracle, Killian, was born in October 2013. We knew ahead of time that he would likely be a preemie, but his delivery was still sudden. He was born via C-section at 1lb 3oz or 540 grams at 28 weeks. He is now over 18 months old and a little butterball of energy.
2. How long was your NICU stay? What was the hardest part?
Our NICU stay was 156 long days. The hardest part outside of the obvious not having him home, was probably the beginning and end of his stay. That bleary eyed survival mode you live in for the first few weeks when you dread a midnight phone call and don’t know what the next day will bring. However, psychologically, the worst time was right before he came home. It was a month of no progress just looking for better eating and weight gain. I was at my most burnt out and just so ready for him to be home. That time period can often be called “hitting the wall”, and boy, that is exactly what it feels like.
3. Do you know what caused your premature birth?
My placenta didn’t develop correctly, for undetermined reasons which led to him having severe IUGR*. That in combination with my very sudden onset HELLP syndrome*, led to his early delivery. He had stopped growing and I almost died. Talk about a dramatic entrance.
4. How are you and your baby doing now?
We are doing good. It’s summer again and we are excited to be breaking out of our winter lockdown. The only continued issue is his oral aversion which is common for micro preemies and IUGR kids. Because of that, he has a g tube*, which doesn’t bother him at all but does require greater micro managing. He is just mildly behind but that is more relative to growth issues before his g tube placement. He is otherwise healthy and an extremely active, rambunctious, intelligent, and happy toddler.
5. What advice to you have for new preemie parents?
My advice to anyone going through this is: -Take care of yourself too. I know how hard it is, but your child is in the NICU for a reason. Let the nurses and doctors take care of your little one so you can eat, sleep, shower, and see your family. You can’t take care of someone else if you are falling apart. -Advocate for your child. Doctors tend to just spit out their treatment plans or options available. Write down all those big words and acronyms and research them. Understand what is happening so you can voice concerns and be actively involved in your child’s care. -Ask for help and be gracious enough to accept it. Whether it’s donations, someone cooking dinner, watching an older child, or just being there emotionally…don’t go it alone. Let others help and never be afraid to ask. -Find support. Facebook might not be your first thought, but from a micro preemie support group to an exclusively pumping one, these people have calmed my fears, built me up when I needed it, and cried tears of joy and sadness with each other. -Enjoy your child. It is so tough to go through the NICU, and whatever complications come from prematurity. It is still the beginning of your child’s life. Enjoy the firsts, celebrate the accomplishments, and don’t be afraid to smile.
From the March of Dimes website:
HELLP Syndrome: Some pregnant women with high blood pressure develop a condition called HELLP syndrome. HELLP stands for these blood and liver problems:
- H–Hemolysis. This is the breakdown of red blood cells. Red blood cells carry oxygen from your lungs to the rest of your body.
- EL–Elevated liver enzymes. High levels of these chemicals can be a sign of liver problems.
- LP–Low platelet count. Platelets help the blood clot.
IUGR: Intrauterine growth restriction (IUGR) refers to a condition in which an unborn baby is smaller than it should be because it is not growing at a normal rate inside the womb. Delayed growth puts the baby at risk of certain health problems during pregnancy, delivery, and after birth. They include: Low birth weight.
G-Tube: A gastrostomy tube (also called a G-tube) is a tube inserted through the abdomen that delivers nutrition directly to the stomach. It’s one of the ways doctors can make sure kids with trouble eating get the fluid and calories they need to grow.