Tag Archive | nicu awareness

Prematurity Awareness Day 2019

Wear your purple today in honor of Prematurity Awareness Day!

There are so many lasting effects of premature birth that it’s hard to list them all. Not only do you have the ones that make themselves known around birth (low birth weight, breathing assistance, etc), you have all the things that could happen in the NICU (blood transfusions, surgeries, infections, caffeine, TPN, PICC lines, specialists, etc). Then you can have all the things that happen after the NICU, like early intervention therapies, more specialists, more surgeries, developmental delays, etc. Even in the best hospitals with all the available treatment, sometimes that isn’t enough to save the baby. Some are simply too early, too small, or too sick.

The other unseen effect is what happens to the parents. Seeing your child hooked up to wires, unable to breathe on their own, fighting infections, needing surgery… these things take a toll. The rate of post partum depression is up to 70% in NICU moms, compared to just 16% in the general population (Graham’s Foundation study). PTSD is also a concern, with 53% of mothers and 35% of fathers developing it (Pediatrics Journal).

The final effect of prematurity is the What If syndrome, as I like to call it. It starts out with self-blame at the early arrival of the baby: what if I hadn’t had that cup of coffee each day? I know it was within the limits of caffeine, but what if I hadn’t? What if I had eaten more fruit and vegetables? What If syndrome then morphs into a trip through all the horrible things that can happen in the NICU: What If the baby catches a cold? What if the baby gets an infection? What if the baby has more desats and bradys? If the baby comes home, What If syndrome likes to go nuts: What If the baby stops breathing at night and we don’t know because there’s no monitors? What if someone comes over and they are sick and then the baby gets sick? What if the baby isn’t catching up to their milestones? What if they aren’t eating enough? What if we end up back in the hospital?

The final question that I’ve seen other Preemie moms deal with is: What If it happens again? The cause of many premature births isn’t known. Sure, I had preeclampsia and HELLP syndrome and those are probably listed somewhere as the cause of delivery. But how did I end up with that? Could I have done something to prevent it? No one knows. Aspirin looks to be a big help in delaying preeclampsia, but it doesn’t always work. The same goes for things like incompetent cervix, premature labor, early water breaking. No one knows why these things happen. There are some treatments to help, but nothing is guaranteed.

Prematurity can happen to anyone. I’m so glad that we had such a good outcome (even with our 3 months in the NICU and the hydrocephalus diagnosis and surgeries). There are many people who aren’t as lucky. And I’m glad that I’m working toward being able to care for those babies (and parents) who find themselves in the world of the NICU.

NICU Awareness Month

As I mentioned in my last post, September is Hydrocephalus Awareness Month, but it is also NICU Awareness Month! Here is the short story of how Little Miss Minion ended up in the NICU.

Little Miss Minion was born at 28 weeks because I had developed something called preeclampsia. Basically, this is high blood pressure that has negative effects on blood vessels that carry nutrients to the baby and to the mother’s organs, particularly the kidneys. When my kidneys began releasing large amounts of protein (measured by weekly urinalysis), my doctor decided I needed to be on bedrest. Two days into bedrest, I had a follow-up appointment with more urinalysis and bloodwork to see how things were progressing. When everything was analyzed, they told me to go the hospital for confirmation and to expect to go back home for bedrest.

While doing more bloodwork in the hospital, it was determined that I had also developed something called HELLP Syndrome, a complication of preeclampsia. In addition to (or because of) the high blood pressure and kidney damage, my platelet count was lowering, my red blood cells were being broken down, and my liver was being damaged. All of these things together made for a very bad combination. Toxins were building up as my kidneys and liver were damaged and unable to filter them out. My red blood cells were damaged, and my platelets were being destroyed. Platelets are a very important component of your blood. When you have a cut or any bleeding, they flock to the area and cause a clot, which stops the bleeding. Low platelets means that the chances of hemorrhage increase. Not a good thing when the only way to stop your symptoms is an emergency C section.

The scariest part of this whole thing is that I FELT PHYSICALLY FINE. I had headaches, but I always got headaches. My feet were puffy, but I was pregnant and that is apparently common. I am still so incredibly thankful that my OB listened to me the first time around (we had a mini version of this in April, when I was 25 weeks) when I said something felt off, but I couldn’t put my finger on it. My blood pressure was higher than normal for me, but still within normal limits. My bloodwork came back off, but not off enough to conclusively prove anything. My feet were puffy, but only after I walked around at work.

I had my first visit to the NICU a few hours after LMM was born. I had been too sick from the magnesium (used to keep my skyrocketing blood pressure from causing a seizure) to go down and see it. I can’t remember at the moment if Mr Minion was able to go down and see it beforehand. I know they sent a couple of the neonatologists up to talk to us at some point before she was born. We had been aiming for 34 weeks, then 32 weeks, and then LMM stopped moving on the monitors I was strapped to 24 hours a day. An hour after she failed the non-stress test, she was here.

My first memories of the NICU are hazy because of the magnesium. I don’t remember getting to her room, but I remember being in the room and looking at the incubator and thinking, that is not a baby. That can’t be a baby. So many wires and tubes and nurses…so tiny. There is a picture of me in the hospital bed in her room looking absolutely trashed and I can see the state of shock I’m in.

As I began to physically heal, the NICU became less of the shadowy and terrifying place I had seen that first night, and became like home. We had a routine after I went back to work 2 weeks later: we would arrive at the NICU at 6am. I would pump and we would get the overnight report from the nurse. I would leave for work at 6:30 and Mr Minion would stay until around 8, maybe getting to help with her diaper change or even holding her. I would get off work at noon (my work allowed me to change my hours so I didn’t burn all my time off before she came home) and drive to the hospital, change my clothes, pump, and hopefully get to hold her for an hour or two. Then I would pump again and try to take a nap. Mr Minion would arrive and we would have dinner in the cafeteria, then go back to the room for her evening cares (diaper change, temp, heel stick for sugars). One of us would hold her for another hour, I would pump again, and then we would head out after the night shift switch.

Repeat for 84 days.

When she finally got out, I was sure I would never go back. Then, I wanted to go back to help with a fundraiser for the parent group. Then, I joined the parent group as a full volunteer and went back into the Unit itself to talk with parents about their NICU journeys. Now, I’m going back to school to earn a nursing degree so I can come back to the NICU as a nurse.

It’s funny how thing work out sometimes.