Preemie Mom Story: Katie Williams, Part 2

In part one of Katie Williams’ Preemie Mom Story, she shared how a severe case of flu and pneumonia caused her to undergo an elective ventilator placement and medically induced coma to adequately recover and allow her son, Parker, more time to grow in utero.

Just four days later Parker was delivered via C-section at 28 weeks weighing 2 lbs. 11 oz. Parker’s early days had to be recounted to her by family and friends. Her husband would provide much of Parker’s care as Katie recovered her strength over the next few weeks.

In part two, she shares what got her through the tough times, how a brain hemorrhage led to a cerebral palsy diagnosis for Parker, and her advice for moms in NICU right now.

 

What got you through the tough times?

The incredible amounts of love and support from my family and friends. I woke up to find out that my friends had created a Facebook page, keeping friends, distant relatives, coworkers and even some complete strangers updated on my and Parker’s status.

It was so very humbling to see the outpouring of love and prayers. People who worked at the hospital followed the page, family of people who were in the ICU at the same time as me followed the page. It meant more to me and my family than they’ll ever know.

I was oddly at peace with Parker being in the NICU – he was in the very best care while I was in no shape to care for a baby. I knew that he was being monitored day and night and that there was always someone right there in case something went wrong. I knew that I had to get better – to get strong again – so I could be there for Parker when the time came to come home. I definitely relied heavily on the NICU staff to be there for him when I couldn’t.

What kinds of things did you do to feel more like a “regular” mom to Parker?

As Parker grew, so did my confidence at being able to take care of him. I would change diapers and helped with bath time when I could. Mostly I held him as much as possible and sang to him in my terrible singing voice.

How was it relating to friends and family during your NICU stay?

Everyone was super supportive and always eager to hear the latest updates and progress during his two and a half month NICU stay, but I don’t think anyone can truly relate to what it’s like to have a baby in the NICU unless they’ve been through it themselves. It’s such a weird time where you’re almost in limbo of being able to take care of your baby but still having to leave the hospital without them. So much is happening and at the same time there’s a lot of waiting and uncertainty.

Were you working at the time you went into the hospital?

Yes, I was working in the marketing department at a Tulsa-based construction company. They were beyond supportive and never put any pressure on me about when I was going to return full-time. I did plenty of that myself.

Did you go back to work while Parker was in NICU?

I took about a month and half to heal and gain strength and stamina before returning to work, saving the remainder of my maternity leave for when Parker was able to come home.

I would leave work and head straight to the NICU and spend the evening there and then head home to rest and start the process over the next day.

How did you balance work and a child in NICU?

By nature, I tend to compartmentalize things. When I was at work, I focused on work, getting as much done as possible. As soon as I walked out the doors, my focus was Parker and getting to him before the next change and feeding happened. I would stay at the NICU for as long as possible in the evening before going home to sleep and start the process over again. Luckily, I lived five minutes from the hospital and my work was only 10 minutes away, so I was never too far.

Was there anything anyone did for you that helped make the NICU stay easier?  

We loved it when people brought us food. The last thing we were thinking about was meal planning and grocery shopping. My friends even set up one of those meal delivery systems where people could sign up for a day to bring food over. We were grateful and it was one less thing we had to worry about.

What would you tell a mom who has a baby in NICU right now?

Don’t be afraid to ask questions, even if they seem dumb or obvious. I peppered the nurses with questions all the time to help reassure myself that I would be able to take care of Parker when he finally came home without the support of a team of nurses and doctors being right there.

Don’t hesitate to ask about any services that your preemie might qualify for either like Sooner Start, Oklahoma’s early intervention program designed to meet the needs of infants and toddlers with disabilities and developmental delays. Having Sooner Start set up from the moment we got home from the hospital was a huge blessing. They worked with Parker on occupational therapy when he was a baby and later physical and speech therapy. They helped guide us in the transition process as he aged out of the program when he turned three.

There is no shame in talking to a professional, like a therapist, if you need to. Pregnancy is already a stressful time and when you add a traumatic birth and/or NICU stay on top of it, it can be beneficial to have a third party to talk through things and work through your feelings.

And lastly, I would tell them that pumping is the absolute worst. I hated every moment of it until a friend of mine told me to pick out a TV show to get hooked on and only watch it while pumping. That way, you had something to look forward to. This was a total revelation. I went from dreading pumping and wondering if I really needed to do it to not minding so much because I would get to watch the next episode of The New Girl.

How is Parker today?

Parker is now three-years-old and is the most amazing kid (I may be biased). He has biggest smile and the most infectious laugh with this crazy red hair that totally fits his personality.

When he was born, he had a hemorrhage around the left ventricle of his brain. While in the NICU, they regularly monitored the hemorrhage and it was during one of these scans that the radiologist noticed white spots around the ventricle, an indication of periventricular leukomalacia (PVL) which is the leading indicator of cerebral palsy. His NICU doctor prepared us for what that would mean and, based on the location of the spots, the areas most likely to be affected. We received the official diagnosis of spastic hemiplegia cerebral palsy affecting his right side when he was almost two. Even though we knew it was coming, it was still hard to hear.

We are incredibly fortunate. Parker walks without any assistive devices and is toughest kid you’ve ever seen. We had Sooner Start from the very beginning to show us stretches that would help keep him loose and maintain range of mobility. We do private speech and physical therapy and see an orthopedic surgeon in Kansas City who administers Botox injections every three months to keep his limbs loose. He also does horse riding therapy in the fall and swim lessons in the summer. This kid is fearless and never slows down.

We have an amazing team of doctors and specialists that have helped to get Parker to where he is today. He is always moving and into everything. Somehow his reach gets longer every day and he is able to grab all the things. So yeah, he’s a typical three-year-old. He’s also training to be a big brother. I’m excited to be pregnant again and am due in December.

 

I always say preemie moms deserve a merit badge. What merit badges do you think you have earned?

Not to be cheesy, but I would actually give my husband a merit badge. My amazingly strong and optimistic husband was there by my and Parker’s side making hard decisions, talking to doctors and nurses, keeping the family informed and being my rock through everything. I mean, the man learned how to use a breast pump while I was still in a coma because my milk came in shortly after Parker was born so that our son could have the “liquid gold.” He changes diapers without blinking an eye and is the one who takes Parker to most of his appointments because my work schedule isn’t as flexible. He is the best father to our son and the most incredible man. So I would give him a merit badge for basically being the best ever.