Prader willi

Sixth Sense

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Photo by Garon Piceli on

All humans have five major senses to engage with the world. These senses let us explore and interact with our surroundings, the physical world that we can enhance with our smell, taste, touch, sound, and sight. What about that gut feeling, the intuition or discernment of a situation? Is that our sixth sense?

Day two of my hospital stay the pediatrician and neonatal specialist examined Elsa by my bed. I could see them testing reflexes, testing strength, looking at her physical features and trying to find a reason for her lack of muscle tone. Genetic testing was already underway from her cord blood but this would take at least a week for results. I knew what they were looking for. I knew all the special tests they were performing. I asked a million questions as they went from one test to another. She had small hands and feet, a bulbous forehead, down-turned mouth, hypotonia, decreased rooting reflex, decreased moro reflex, increased respiration rate, poor growth, and increased lethargy. She passed her hearing test, the echo-cardiogram, and initial cranial ultrasounds. I knew what she had but I didn’t want to except it. I knew she had prader-willi syndrome. My husband is such a great optimist. I’m a negative pessimist. I was trying so hard to see her through his eyes, but in my heart I knew this was her diagnosis. A month later my intuition number one would be right (that’s another post coming soon.)

The last day in the hospital I was feeling physically well. I was very mobile and only taking Tylenol and Advil for pain. My nerves were a wreck and I still beyond tired. I was ready for discharge but Elsa needed to pass the car seat test. She needed to keep her oxygen saturation stable while being in a car seat for 90 minutes. The first attempt she failed. The second attempt, she failed. The third attempt my husband and I needed to intervene. Of course she failed! She is hypotonic. She doesn’t have enough muscle strength to keep her head in alignment and keep her airways open in an upright position. We decided it was time to ask for a physical therapist in the NICU and my husband, a physical therapist himself, to adjust and prop her into a position she could maintain for 90 minutes. This time she passed. Intuition number two was right.

With my husbands help we left the hospital with Elsa propped in her car seat. Relief and freedom from the hospital felt good but dread and isolation also filled my heart. I didn’t know how to take care of her. I felt alone. It’s a funny feeling, knowing I had a supportive husband to split feedings, friends to help with my older boys, and a church family on standby, I still felt isolated. I still felt like the well-being and survival of my daughter rested solely in my hands. It continues to be this way but the feeling is less intense.

Day six of Elsa’s life was her first airplane trip. This time we were returning to Juneau, a simple hour flight home. Airplanes are not known for their comfort in seating or air quality. It’s hard to hold an infant and sit on a plane six days after a c-section. I was in pain but I had bigger things on my mind. After Elsa finished her bottle I noticed her lips turning blue. We were 30 minutes into our flight. My heart was pounding in my chest. I didn’t know what was wrong. Her ribs was still moving. She was sleepy. She was continuing to turn blue. I jumped out of my seat and quickly walked to my husband. The boys were sleeping in their seats with my mom holding my second. David took his earbuds out and held Elsa. I’m always amazed at how level headed he is in stressful situations. He started counting her breaths. He took her heart rate. Both were normal. He put her in his jacket and covered her head. In five minutes color returned to her face. This is was the first we realized she could not control her temperature. This too would require more attention.20180514_110801

Returning home meant lots of doctor appointments. The first was a pediatrician. Sitting in the waiting room I was uncomfortable. After the nurse measured her height and weight I was more uncomfortable. Something was off. The doctor came into the room and asked lots of questions. She set us up with early intervention of physical therapy and speech therapy. She was very relaxed and ignored the referral to a neurologist. A week later we returned for a weight check. She gained two ounces. Not enough for a newborn. Still no referral to a neurologist. The traveling neurologist would be in town in October. It was May. I felt so uneasy about waiting. David and I left that appointment and I said we needed a second opinion. Intuition number three was right. A week later we saw another pediatrician and it was a great fit. I cried with relief in finding someone who would listen, someone who would be our advocate and partner in Elsa’s healthcare.

Since birth Elsa has had a hard time latching onto the bottle. She was too weak to breastfeed. It hurt a little knowing we would not have the closeness of nursing but as long as my baby was being fed I was happy. Her upper lip and tongue were very tight. The frenulum, or tissue attaching the lip to the gum and the tongue to lower mouth, was so tight she developed a large blister across the upper lip after feedings. She could not raise the tongue to the roof of her mouth. I knew we needed a frenectomy as soon as possible. Even though the pediatric dentist and my new pediatrician did not think it would help much due to her low tone I insisted we see if this minor surgery would improve her latch. My intuition number four was right again. To the pleasure of the dentist, whom I absolutely adore, and my pediatrician, Elsa no longer had blisters, fed faster, and could now move her tongue lateral and suck with more efficiency. Again, I’m thankful for a team of providers that work with me and listen so well.

With this new pediatrician, we were seen every three days for weight checks, referred to Seattle Children’s Hospital for neurology and more blood work for prader-willi syndrome, and given tools to help Elsa. Intuition number five would come while staying at Seattle Children’s but that’s a future post (keep your eyes open for that one!).

Call it a sixth sense, your intuition, your gut feeling, or discernment, I call it a gift from the Lord. My gift is wisdom in situations to discern the right path, to weigh the pros and cons. It’s to listen to that voice in my heart and in my head that says this is the way to go. My life is filled with these discerning moments. Some I have followed, some I have not. I believe it’s the Lord guiding me, his hand gently moving me in the right direction. When I’m close to Him, quieting my heart, attentive to His Word, I can hear the pull. In the past I have not obeyed this call and regretted it. What I’ve never regretted is being bold and brave to obey His leading.

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