Prader willi

Pink Dinosaurs

One of the best things about church, not only in your home town, but the big Church around the globe is that there are people everywhere praying and supporting you. Angela is one that after moving from Juneau to Anchorage continues to be a great support. She was there in the hospital as David, my husband, left to be with our boys overnight. She helped me feed Elsa. She let me sob in her arms. She let me tell her all the fears and anxieties I felt. She also let us invade her house for 3 weeks but I’ll tell you more about her later. She’s an angel and my very best comrade.

As the nurse came back into my room after taking Elsa for a weight check and more glucose testing, I could see her arms were empty. She carefully told me Elsa was sent to the NICU due to blood glucose levels of 38. She was lethargic, hypotonic (low muscle tone) and needed fluids. I was angry! I was upset I didn’t have her in my arms. I quickly called David and told him to come back.

Don’t forget, I just had major surgery. This was my third c-section and I was familiar with pain medication and the importance of rest after abdominal surgery. With Elsa away I couldn’t think of anything but taking care of her. I politely but anxiously asked the nurse to take the IV off of me and take me to her room. I was informed I would need to be back in my room, a level up from NICU, to receive pain medication every four hours. I didn’t care, I wanted to be with her.

I saw her in her little open air crib bundled and sleeping. Three nurses were in the room quickly putting cardiac leads, pulse ox monitor, and a blood pressure monitor on her body. One nurse was preparing an IV for fluids, another took her blood glucose. After two attempts to find a vein, the charge nurse for the night suggested giving her a bottle of formula. At that time I was slowly producing milk but she needed more. She was too weak to nurse so I pumped every three hours around the clock, syringe feeding her whatever 2-5cc I could pump out. Elsa was able to feed off the bottle with a bit of assistance to swallow. She was still learning coordination of suck, swallow, breath. As she was taking a bottle, the nurse suggested we wait and monitor glucose levels to avoid the IV. Two hours later her glucose was back up to 80! We could stay with syringe feeding breast milk and bottle feeding formula to keep her stable. I didn’t know how amazing this was until after her diagnosis. Most babies with prader-willi (PWS) have NG or G-tubes.

David came into the NICU to help feed Elsa and I went back up to my room for pain medication. My incision was hot. It was hard to move from sit to stand. I could not sleep on the pull out couch in the NICU.  After oral and IV meds, I promptly was pushed back down in a wheelchair to the NICU and sat by her crib praying. Praying she would stabilize, praying she could do this all on her own, praying I could get through it all.

Morning came quickly and I hadn’t slept all day or all night. I continued to pump and feed Elsa. I missed a few pain meds but I was so concerned with Elsa I didn’t feel much. I hadn’t eaten much so David suggested we go to the family room and eat breakfast. I remember crying so hard I could barely catch my breath as he pushed my wheelchair. I didn’t care who could see me. I didn’t care my face was red and swollen from lack of sleep. I was heartbroken.

We ate breakfast, me slowly pushing food in my mouth through sobs. David was so patient. He listened, he cared, he was a rock for me. A woman came into the family room to eat and I tried so hard to hold back tears. I couldn’t. She gently asked if this was my first baby, a question everyone asked me at this point. I couldn’t talk so David did the talking for me. I didn’t know her, I didn’t know her situation or how long her baby was in the NICU. She didn’t know me or my situation either. All she said was that she was in my spot just a few weeks ago. She said it gets better. It gets easier. You learn to help your baby any way you can. It would take me a long time, but she was right.

A few hours later with Angela, the family support coordinator stopped us in the hall. I was still sobbing. She asked what image we wanted outside of Elsa’s room. I thought of her brothers and all I could think of was a pink dinosaur. After going back up to my room for medication David and I walked by Elsa’s room and saw her pink dinosaur. She now has at least one outfit in each size with pink dinosaurs.   20180730_073045.jpg

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s