Prader-willi journey

Day 0

It’s 3 months after my daughter was born and yet I’m nervous writing about her birth. Each birth story is unique and personal but I feel my third child’s entrance into the world needs to be shared with others. Maybe so you know Elsa a bit more, or maybe for someone to know you’re not alone in this PWS journey.

At 32 weeks pregnant my doctor told me I was measuring large for gestational age. I wasn’t worried too much since being two centimeters above or below was not uncommon. The ultrasound following was normal with regards to the baby but I begun to develop increased amniotic fluid. If you don’t know how amniotic fluid is formed, it’s actually the baby that produces the fluid, drinks and breaths it in, and then expels the fluid again. This process helps the baby develop the muscles for sucking, lungs, bladder, kidneys, stomach, etc. It was then I was monitored a bit more closely with another measurement and another ultrasound, this time with more amniotic fluid.

I remember getting the call from my primary doctor just after dinner and my two boys, 1 and 3 years old at the time, were running around the house and play fighting with their dad. I was so nervous to answer the phone, probably because I knew what he was going to tell me. In a very calm voice he said I needed to fly to Anchorage the next day for a more detailed ultrasound and followup with a maternal-fetal specialist. Where we live, there are no specialists, so it is either Anchorage or Seattle. Getting all the plans in place for travel with two toddlers at home and a husband who needs to work was stressful but we managed to put it all into place, I would travel alone and my husband would stay back with the boys. I would stay with friends from church for a night and be back to fill the role of mother to the family. Once in Anchorage, sitting across from the specialist, I held my friends hand as he told me it was not safe for me to return home due to the risk of premature labor. Juneau does not have a NICU and that is where my baby girl would need to be at delivery.

My heart was pounding, my brain racing with all the possibilities of what was wrong with my baby girl. I cried big, hard, long tears of anxiety, sadness, and loss. As a physical therapist I knew what the ultrasound tech and doctor were measuring, were looking for movement, were discussing quietly. I asked for him to be frank and blunt. I needed answers to be clear and direct for my science, black and white brain to understand the grey of emotions in the moment. He said there were multiple possibilities but we would not know until she was born. He wanted genetic testing from the cord blood at birth, the level 3 NICU team ready in the delivery room, and to deliver via repeat c-section at 38 weeks. I agreed with questions looming in my head.

I spent two weeks away from my boys, and one week of absolute fun with all of my chickens in Anchorage exploring museums, parks, the library, and eating good food. I had two more ultrasounds and two non stress tests before delivery. My mom came up to watch the boys while my husband and I were planning on being in the hospital. We left early in the morning, me with an empty stomach ready for surgery. This would be c-section number three so I knew the drill. My husband took a photo of me before I changed and laid down for nurses to try unsuccessfully three times to put an IV line in my arm. Finally we were ready to go back to the OR. I hate the way a spinal feels. I shake, I feel like my diaphragm forgets how to keep me breathing, and it’s so cold in that room. My husband is by my side and my doctor reassures me everything will go smoothly. I can’t tell you how many people were in the OR but it was well over 20. A regular baby unit team, a NICU team, two neonatal specialists, my doctor with his aide and a resident, the anesthesiologist, and countless nurses. Needless to say, I’m not shy about my body!

My husband was right by my side. I just looked at him for the entire surgery until my doctor called him back to help suction our baby girl, Elsa Lynn as she began to give a squeal. He was able to watch the nurses perform the Apgar scores and watch her take her first breaths. The teams looked closely at her and to their surprise she was performing well. I was able to hold her skin-to-skin and my husband stayed close by her side while I was in recovery. I was relieved to see she was doing well. She was small, she did not cry much, just small squeaks, and she was floppy. She was breathing independently and her heart was normal which meant she could come with me to the mother-baby unit, but it was clear there was something still wrong with the lack of normal infant movement. Regardless, I was so glad she could be with me and I was finally able to see my girl face to face.

My husband left the hospital as things were settling down. He needed to be with our boys for the night. That’s when Elsa’s glucose levels began to fall dangerously low.

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