Primary Care Nurse
Another term I had never heard used before my twins were in the NICU was Primary Care Nurse. Sure the term sounds self-explanatory, but I had no idea there would be one (or in our case 2) for my babies.
Those first few days of the NICU were a bit of a blur.
The day I gave birth, I was full of mixed emotions. Joy that my babies were both alive and fear of the unknown mixed with pregnancy hormones. I was also trying to recover from a pretty major surgery and anesthesia.
When they wheeled me in to see my twins, I could hardly stand. Then, I thought I was going to be sick, so one of the nurses wheeled me back to my room. I remember her helping me into bed, and making sure I was alright before going back to the NICU.
She would become one of my twins’ primary care nurses.
I’m actually not sure if I got to pick their nurses, or if they picked our babies. As I said, it was all a bit of a blur. However it happened, they were definitely the right choices. I was able to trust them with my babies when I couldn’t be there, care for them like I would, and be completely honest with me about whatever was happening.
Today, you’ll meet a family who had the right primary care nurse for their baby too. Taryn, the mom, also gives some great advice. Please meet her sweet boy Wyatt, and learn all about their journey.
1. Tell us about your baby.
My little boy Wyatt was born at 28 weeks 5 days. He weighed 530 grams or 1 lb 2 oz.
He was born on March 28th, 2017. He turns one next week.
2. How long was your NICU stay? What was the hardest part?
He stayed in the NICU, level 3 until he was 40w1 day and then we were transferred to a level 2 NICU. All in he stayed a total of 118 days.
The hardest part of the NICU stay was definitely those first few days. Not knowing if he had a brain bleed and waiting for them to do the cranial scan was nerve-wracking. Being told by the doctor that delivered him that he was the size of a 23/24 weeker, and they don’t know why, that was heartbreaking. The mom guilt for that is heavy.
On top of that, being told that they don’t normally deliver babies that small, he should have been double that weight.
Going home without your baby, that first night I had a panic attack because I just couldn’t deal with it all.
3.Do you know what caused your premature birth?
This was my second and last pregnancy. My first was a girl who was born 4 weeks early, c section and she ended up having hip dysplasia (as she was breech) and wore a pavlik harness from 6 weeks to 6 months old. So, going into this pregnancy that was my biggest concern, that our second child would also have to wear a harness.
My doctor couldn’t tell me much. I woke up in the middle of the night with bleeding and drove myself to the hospital. They couldn’t tell why I was bleeding or stop it.
I got a steroid injection to help his lungs, and they hoped I could wait the 12 hours to get the second injection to give him the best chance. When they did an ultrasound, both baby and placenta were small. They gave me a morphine injection, but before they even gave that time to work, I went and had a c section as his heart rate dropped with the contractions I was having.
So, it’s a mystery as to why I was bleeding and why he was so small.
4.How are you and your baby doing now?
He is doing good. He is a happy kid and has the cutest smile. But he is delayed a lot.
He went home on an NG feeding tube because he developed reflux in the hospital and didn’t have a good suck to be able to take milk. We thought that he just needed more time, but his reflux got worse and the small amount he would take from a bottle stopped.
So, 2 months ago he got a G tube and in 2 days he goes in for the button style G-tube.
Unfortunately the reflux and feeding tube has delayed other development. Tummy time was difficult, and therefore at 12 months old, or 9 months adjusted, he still isn’t sitting by himself. He isn’t even close to crawling yet either.
We have started solids and its a slow process as he doesn’t really have a hunger drive from being tube fed all the time. He is interested in food but doesn’t actually eat much.
We see a dietician and occupational therapist for his feeding, physical therapist for things like siting and crawling, regular doctors who look at overall development, an endocrinologist for his thyroid and home nutrition who help with his g-tube care.
5. What advice would you give to a new preemie or NICU family?
Ask for a primary care nurse and don’t just get one, get 4 or 5.
We were extremely lucky as one nurse asked us if we had a primary care nurse and explained that when they are on shift if they are your primary, they will be assigned your baby. Then they get to know your baby and you better, and can fight for you more when it comes to doctors making decisions and getting your voice heard.
We didn’t have a primary care nurse at that stage, and asked her immediately. It turns out she was pretty much the most senior nurse there, and she was absolutely amazing.
We felt like our son was in great hands when we would leave and she was on.
Thank you so much to Taryn for sharing her journey and her amazing fighter, Wyatt, with us. Please leave any supportive comments or questions below.