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Life Lesson 1057…Self-Care

5:58AM, eyes half open to search for my glasses, I can hear silly giggles and stomping feet coming up the stairs. The boys are awake and that means the day has begun, full steam ahead. They are already asking for breakfast and looking for the Lego bin. Elsa is back to sleep after her 4am feed. David is getting ready for work so I subconsciously get a cup of coffee and begin working on breakfast for the boys. By the time it’s 7:30am everyone is fed, dressed, backpacks ready and I’m about to feed Elsa again before we head out the door. Oh but wait…I forgot my shoes, didn’t eat breakfast, didn’t brush my teeth or comb my hair. Somewhere in all the hustle and bustle, the crying, the throwing of toys, and kiss the husband goodbye, the mother is forgotten.

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My boys playing while I was away with Elsa

Recently I have a few friends who are either pregnant or just had their first or second baby. Pregnancy brings a large suitcase of hormones, tickets to a fast and furious emotional roller coaster, and a puke bag in the front pocket of the seat. A first baby means you deliver not just a baby but sleepless nights, ear plugs for crying, so many diapers, and binders full of new subjects to worry over. A second baby, well you still get all of the first but you add to the bookshelf a second edition of worry and volume two of sleep deprivation. Even if you don’t have a child with special needs, motherhood is rough. With the to-do list piling up and more humans demanding your attention relying solely on your care, it’s all too easy to forget about yourself.

Self-care is so important and it is one life lesson where I am still adding knowledge and experience. Lately, I see so many moms in my cycle of friends that might just need a little extra encouragement, a little nudge in the right direction, and reassurance that this motherhood gig is tough but so rewarding. Nothing in my life has brought me closer to Jesus, brought me to tears in prayer, and yet produced so much joy. Here is a little of what I do for myself that keeps me sane, keeps my mind growing, and ultimately makes me a better mom at the end of the day.

~*~

First things first. Taking care of yourself as a mother does not need to take up time. It does not need to be away from the kids and it does not need to cost extra money. It takes creativity and exploring the subjects that are interesting to you. Take a few minutes and brainstorm the things that you love to do and work them into your day as you can.

  • Hot cup of your favorite tea or coffee beverage: Okay maybe your drink is also in a beautiful fluted glass the color of red after 3pm.
  • Nap-time: I take nap-time very seriously. All of my kids nap at the same time for at least an hour. I take full advantage of this time to nap as well. With a baby in our house, sleep is limited and stress is high. A little extra shuteye for me is just what I need most days.
    • Might as well add to this by saying some nights I just need to go to bed early. Toddlers are notorious for early rising. My kids are no exception! If I want more sleep, which makes me a happier and more effective mother, I need to go to bed early.
  • Podcasts: I am definitely not an expert in media and computers but you can find a podcast on just about anything. I’ll listen to a podcast while the kids are having free play in the afternoon, while doing dishes, or while walking on the treadmill at the gym. It’s usually a sermon or a podcast from the Village church on knowing faith, topics of Christianity and debating current topics in Christian culture.
  • Time with husband: My kids are in bed for the night by 7:30pm every night. This time leaves room in the day for us as a couple. We can talk, read together, or just watch our favorite sitcom at the end of the day. This is great self-care but it’s also great for any marriage to spend some time together without the kids around.
  • Reading the Bible: My morning time is essential to my day. Most days it’s only five minutes that I get to read through a passage of scripture and short devotional. Other mornings I get the luxury of meditating on scripture and s pending time praying through a passage. IMG_20180708_193453_131
  • Crafting: Sometimes I’m able to multitask and knit or crochet while the kids are around and sometimes I do this once they have gone to bed. Knitting for the kids is rewarding for me and they look forward to what I’m making. This is one of my favorite yarns because it’s thick, easy to work with, and fast to knit or crochet a project. Currently working on a hat to match this blanket.
  • Books: I’ve been reading a lot lately. I read while the kids are playing, at nap-time, or after they have gone to bed. Maybe I only get a page read at a time but it’s something for me that will keep my mind engaged and keeps me growing in different areas of my life. Here are a few that I am working on at the moment.
    • Disciplines of the Beautiful Woman is a rare book that speaks Gospel truth in boldness. It’s an oldie but a goodie. I highly recommend this book!
    • Gross Motor Skills for Children with Down Syndrome is the current book I’m reading for Elsa. Although she does not have Down Syndrome, she does exhibit the same hypotonia. This book is perfect to demonstrate positions to help an infant reach their milestones. Super easy to read and to follow the pictures, I’ve been using this book often during our afternoon physical therapy sessions.
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Elsa sporting a bonnet I made

I think what I have learned from motherhood and taking care of myself is that it really doesn’t take much time or effort. It can be simple or it can be extravagant. Either way, it helps me be a better mom. When I’m stressed, at my limits, nerve about to snap, I’m not at my best. When I take the time to breath, to engage my brain in the things that I love, and remind myself that I have an identity outside of my children, I can mother them with more love. Our identity as mothers should not solely lie within our children. It’s crushing for them. Find the time and space to take care of yourself to love your kids more.

~*~

What do you do for self-care? Run, sew, shop, paint, cook? I’d love to hear your way to care for yourself in the comments and share ideas with others.

 

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Prader willi, Uncategorized

Dark Rooms Part 2

Do you ever wake up suddenly by a noise and try to spring into action? It’s dark, everything is a little blurring, and your body just works on auto-pilot. Sitting in the MRI room watching Elsa was a blurry dark mess of emotions. Yet in the mess there were sparks of light, sparks of hope.

Tests came quickly and I pushed to have orders in fast for Elsa. I wanted to get as much done as soon as possible despite the fatigue. Our first night was sleepless. I was still in a bit of shock. I didn’t know when I would be coming home and I missed my boys. Around 11pm the phlebotomists came in for the first round of blood work. I helped one hold Elsa on the crib while the other carefully tried to find a vein. I had done this before and I wasn’t squeamish with needles. On a 7 weeks old, veins are small. On a 7 week old with PWS, they are even smaller. First attempt was a failure. You have to understand, due to the hypotonia, Elsa did not cry, she did not make cooing noises and she barely moved much at this point. During the first and second attempt of blood drawing she cried and riled her body like I have never seen before. During the second attempt, she cried so hard she passed out. I was about to walk out of the room as my eyes filled with tears again. I could feel the heat in my chest rise as she lay limp and tired on the crib. I might have been rude in the moment but I demanded they get the IV team to draw blood. I would not watch another phlebotomists wiggle a needle in her arm or foot again.

The IV team came in after midnight. Two nurses gently searched for a vein and found one on her ankle. She was dead tired from the previous activity. Thankfully this nurse was smart and placed an IV line for drawing blood, first attempt and kept it in for future draws to avoid more poking. Elsa barely cried, probably due to to fatigue, but this time it was much smoother.

I continued to feed Elsa every three hours with expressed breast milk. It took 30-40 minutes each feeding and positional changes to keep her awake. I slept a total of 3 hours that night, chopped into bits and pieces. I wore the same clothes from the day before, my hair in a permanent pony tail out of ease. It wasn’t more than 7am when the doctors started flowing in. Three neurologists, two pediatricians, a lactation consultant, a nutritionist, a case manager, and two nurses were on her team. Soon we would add a physical therapist, occupational therapist, and speech language pathologist.

20180630_071921Each doctor did an exam, the same reflex testing, the same once over for muscle tone, the same questions. Each time a doctor came in I pulled myself together wiping the tears that seemed to have a continuous flow and communicate her care and needs. The day went by quickly. Late in the evening a nurse came to escort us to the MRI room. Again, we walked the maze of hallways to a dark room. I stepped through a metal detector with Elsa. We were ready for her MRI. I helped the nurse place her on the table. She was swaddled, earplugs and larger ear muffs were placed, foam around her head, and a blanket around her again made her still in the small cocoon. She was fast asleep. I was given earplugs and told I could sit in a chair in the corner of the room. From the corner I watched her small frame glide into the MRI. The loud clanking began and continued for half and hour. It was dark. Only the red button from the exit sign, the screen showing her placement in the MRI machine, and a sliver of white under the door gave off light through my blurred teary eyed vision.

Sitting in that chair made my head swirl with emotions. I was finally alone. I wept out loud with grief, anger, sadness, and a deep pain to care for my daughter. I felt helpless. It seemed like I should know what to do to help my own child. That dark room was my safe place to let everything out. I held my emotions down to deal with all the medical stuff and to keep our normal routine at home. Not here, everything seemed to be brimming over.

It didn’t seem long until daily rounds were starting on our floor. This time, twelve doctors crowded in our small room. One read her report, the next told us the plan of action, and another discussed a naso-gastric tube (NG tube) to be placed to due poor weight gain. I immediately had questions. She was taking in three to four ounces of milk from her bottle and I was not convinced we had tried all that we could before placing a tube. I requested an evaluation from a speech pathologist and an occupational therapist. I also requested we try fortifying the breast milk. The neurologists wanted a swallow test performed first to test for silent aspiration. If she could pass this test, we would continue bottle feeds with fortified milk.

My gut was telling me Elsa could do this. She could pass this test. I had my reservations as a natural pessimist and was anxious at the thought of placing my daughter on tube feedings. I spoke with Angela, my friend from Anchorage, who reassured me it was a temporary solution until she was strong enough to feed on her own. My pediatrician called me and again, reassured me an NG tube would only be for a few months. This did calm my nerves and I was more at peace with the possibility of an NG tube, yet something in me was still hoping Elsa could bottle feed on her own.

Another sleepless night passed and a nurse escorted me down the halls with Elsa in my arms. A speech pathologist met me in the x-ray room and set up a chair for Elsa to sit in while she explained the procedure. Another technician came in to monitor the videos while the x-ray took continuous snapshots of Elsa feeding. We all donned our lead aprons and Elsa began taking the first 40ml of Barium. As she slowly drank from the bottle, the speech pathologist held her cheeks and chin to support her lips, the same as I did every three hours for feedings. I was nervous and began to pace. I think the technician could tell I was anxious so she talked me through what she was seeing. Elsa took the next 40ml. There was a short delay after some of her swallows. She held the liquid at the back of her throat for a second or two, then swallowed a few more times. She was getting tired. At the end I asked more questions than the probably liked. Finally I asked if she had passed. From their observations there were no silent aspirations. We could continue bottle feedings!

20180725_081811.jpgBefore I left the x-ray room, the speech pathologist gave me several Dr. Brown bottles.  These bottles have a vent system eliminating bubbles that create gas in babies. They also preserve some of the vitamins in the formula or breast milk. There are preemie nipples available as well as the Dr. Brown Specialty kit which contains a valve for infant-paced feeding. She drank more fluid from these bottles than I had ever seen. She had less air trapped in her belly, less spit up, and the nipple was thinner and longer which made it easier for her to suck with her high palate. I was so thankful we finally found a bottle that would help Elsa feed faster and with less effort.

Although we did not need an NG tube at that moment, we did need to continue to work on effective feedings with fortified breast milk. This was a big obstacle that Elsa overcame and one that we would continue to master with each feeding. I never knew she would need to overcome as much as she did in her short 7 weeks of life. Each day she gained weight, was a little stronger, more alert, and engaging with her surroundings. It was finally time to take Elsa home. That day in the dark, the moon reflected the light a little brighter.

 

Prader willi, Uncategorized

Dark Rooms, Part 1

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Memories exude a color in my mind. Darkness is the only way to describe a week I did not expect in our journey to a diagnosis with Elsa.

I frequented our pediatrician weekly for weight checks. I pulled myself together for each visit and thoughtfully placed Elsa in her car seat with all the towel propping for our 15 minute drive. I pretended I was brave and non-emotional for each visit. I put my clinical hat on for the hour to discuss every little minute, hour, day of Elsa from week to week. I did this until my pediatrician said she suspected seizures. I couldn’t hold it in anymore. I broke down in tears and bewilderment. Was I not catching seizures? Was I a terrible parent?

It only took a day to schedule a flight to Anchorage and see the pediatric neurologist for an EEG. This would monitor her brain activity, asleep and awake, for signs of petite mal seizures. My husband and I arranged our schedules for our two boys, his work, and my travels to Seattle. My friend would pick me up from the airport and drop me off at my hotel. My aunt would meet me the next day at Seattle Children’s Hospital for support.

I was relieved we would see a neurologist quickly but scared there was something more serious going on with Elsa. I had bittersweet moments throughout the day. Thoughts were constantly on her feeding schedule, her wakefulness, her facial expressions, just looking for signs of seizures. It was all my brain could focus on.

This was my first time at Seattle Children’s, a place where I would call home for a week. It was a place where the twisting hallways become my walking route for exercise. I was tired but anxious for her EEG. It was the first appointment of the day so it was quiet in the hospital. We were lead into the exam room and the technician explained each step of the procedure. 20180627_092441Her limp arms did not protest all the wires and goop placed on her head. It would take 30 minutes where we sat and watched her drift from sleep to gentle arousal. My heart was full, heavy, and anxious. I sat in a rocker next to the table staring at her face. She slept peacefully with minimal facial expression. I finally took my book out to calm my mind and preach to my soul.

Kiss the Wave: Embracing God in Your Trials has pointed me back to Jesus in my dark rooms. I was only on the second or third chapter at this point but it reminded me through suffering and anxiety, through heart wrenching moments, Jesus is still in loving care of our hearts. Pages are filled with scripture that I prayed over Elsa, prayed into my heart, and pleaded with Jesus for peace. It was a reminder that God did not leave me, I was not alone, and I had Him to call upon in the darkness of night.

I prayed these over Elsa as she lay on the treatment table.

The Lord has established his throne in the heavens, and his kingdom rules over all. (Ps 103:19)

I know that you can do all things, and that no purpose of yours can be thwarted. (Job 42:2)

God is our refuge and our strength, a very present help in trouble. (Ps. 46:1)

 

~**~

 

Goop was still in her long curly red hair when we left the room. We had to wait another two hours to see the neurologist for the results. My aunt and I ate in the cafeteria where parents and children gathered to escape their hospital beds. Families loomed over the television screen that displayed if their child was in surgery or recovery. You could feel the heaviness that fell on individual tables. You could palpate the anxiety of uncertain outcomes of a daughter or son. And yet, there was light streaming through the big windows and smiles on the children’s faces as they talked with their siblings.

It was time to see the neurologist. Maybe it was on my face or maybe I put on a façade of composure but I was wrecked with anxiety. The nurse measured her head, took her height and took her weight. I was keeping track of all three on my phone and I knew this was not good. She had plateaued. My façade was gone. Tears had already filled me eyes as I met the neurologist for the first time. She gently looked over Elsa. The good news was no seizure activity. This was my small light in the darkness. The bad news, she wanted us to stay and be admitted to inpatient for further testing. Even though this was not what I had planned, it would become a blessing. It’s funny how a moment entrenches us and not long after it becomes a glimmer of hope.

Tears came quickly for half an hour as she explained Elsa was lethargic, plateaued in her weight and head circumference, needed an MRI, and additional blood work. I knew Elsa was sleepy. We lived 6 weeks of her small life feeding her around the clock. We worked endlessly to keep her awake and stimulated. I felt like my ability to mother my child was taken from my hands. My attempts had failed and I didn’t know how to fix it.

The next statement she said gripped my heart even more. I knew it to be true but I wanted something else. “I want to do a FISH blood test specific for prader-willi syndrome.” This is a fluorescent in-suto hybridization that detects errors in the genome by deletion. She also wanted to test for imprinting errors. If you haven’t read my previous blog posts, I had suspected prader-willi day 1. My physical therapy training had me over thinking everything, this included. My gut was right if the neurologist suspected it as well. Clinically I could see all the signs and physical manifestations of prader-willi, but deep down I just wanted to see my daughter. I didn’t want to see Elsa just as a clinical presentation.

One of the longest walks was taken to her hospital room. I was crying through the hallways. Holding Elsa in my arms, two case managers lead me to her room. I’m sure people were staring, but that was not on my mind. Failure was on my mind. Sadness and grief, pain and exhaustion filled my body.

It took hours to get settled into the room as nurses, doctors, and case managers rotated in and out. I hadn’t eaten but a small bite since 11am and it was now evening. I hadn’t stopped crying since we left the neurologist’s office. Once the doctors left for the day I was able to speak more with my husband back in Alaska. He calmed me down. His optimistic words filled my ears and his care for me reminded me to eat, sleep, and look after myself as much as I could. His heart always pointed me back to Jesus too, reminding me to lean on Him. Again I was reminded of a hopefulness that was buried deep in my heart. There would be light again. It might have been buried but it was still there.

God is in the midst of her; she shall not be moved; God will help her when morning dawns. (Ps 46:5)

 

 

 

 

Prader willi, Uncategorized

Survive or Thrive

The first time you meet your child is one of the best moments in life. So new, so naive, vulnerable, and reliant on innate instincts of the human condition. You would think motherhood would come naturally. You would think breastfeeding and understanding your babies every little noise would be instinct. If you’re a mother, you know this to be false.

Every child is different. I have two boys who came bursting into the world with personality and loud voices to tell me exactly what they needed. They were hungry for life. They were hungry for the world to be explored. Elsa came into the world quiet, subdued. She could barely take her first breath without assistance. She was too weak to cry, too weak to suck, too weak to tell me her needs. A doctor once told me an infant with prader-willi lacks survival skills and that was Elsa.

Back in my home it was a constant struggle to feed Elsa. Every three hours we would wake her small limp frame of 5lbs 15oz to force in her 50ml of pumped breast milk. She would barely open her eyes. She did not search for the bottle. Her small hands did not reach out in loving adoration of my touch. David and I had our techniques and skills of physical therapy to help her feed. We hold her chin and cheeks just right to increase sucking. We would stroke her neck to prompt swallowing. Tapping her bottle would promote her suck reflex. We would stimulate her with cold rags and deep massage to keep her awake. After 30 to 45 minutes she finishes a bottle and she was exhausted.

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I was referred to a lactation consultant for frequent weight checks and assistance with nursing. In the hospital I had a nurse try to assist me. I hated it. It was much easier with my boys who wanted to eat. They were starving from the beginning of life and have never let up! I nursed both of them for over a year. This time was so different. Elsa needed us to open her mouth for her. Even with milk dripping into her mouth she would not suck. I knew she was too weak to breastfeed. Once the nurse saw how weak and tired she was she told me I was right. My instinct with Elsa was right, yet again. I knew she would need to be bottle fed and I was very okay with that reality.

Every visit to the lactation consultant was dreaded. I knew Elsa needed to be bottle fed for her survival. She didn’t have a voice so I had to be that for her. We tried different holds. We tried a nipple shield. We tried a syringe drip on the nipple. She did nothing. She needed me to facilitate her suck. She needed me to facilitate her swallow. She lacked the coordination and motor control and patterns of suck, swallow, breath. She needed me to teach her how to eat. This was not going to be accomplished by breastfeeding.

After three visits with the lactation consultant and returning home to my husband in tears of frustration and feeling like I failed, I finally became bold. I told nurse I did not want to breastfeed. I told her I wanted to bottle feed Elsa and I was okay with this reality. I would continue to pump due to an overproduction of milk and wean from pumping after a month. I had painful plugged milk ducts every other day. I slept with pillows under my arms due to the pain. I took hot showers with deep painful massage over my breast each night. I would pump every three hours just to relieve the discomfort. I was so tired. It took over an hour to pump and feed Elsa. If not for my husband’s paternity leave I really think I would have had a mental breakdown.

I had eight gallon-sized bags of stored breast milk in the freezer by month one. From frequent travels with Elsa and stress I began to wean from pumping. After using my freezer supply, Elsa began drinking 24 kcal formula. I am so happy and relieved she is growing, not just surviving but thriving.

Breastfeeding is one of those hot topics in current affairs. Maybe because of the politics or maybe because of the push in our culture to be “all natural, clean-eating, and chemical and additive free”. I can’t tell you how ridiculous and frustrating this topic has become for a mother who has breastfed two children and bottle feeds another. We have all forgotten the purpose of breastfeeding. Is it not to sustain an infant’s life? Is it not to give our helpless and fully dependent child the food they need for survival? If one cannot produce breast milk, if one’s child cannot latch with a sufficient suck, what difference does it make if the child is breastfed? The real concern should be giving an infant food for survival. If that nourishment is from formula, then that infant will continue to thrive.

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Sure there is mom guilt. There is pressure from society and I know people look at me with a question in their head when they see a bottle. At this point I have learned to ignore them. I have learned that my daughter is growing and happy no matter what way she puts food in her stomach. I have also learned that I am in a better mental state not pumping daily. I am free throughout my day to enjoy my daughter. I can cuddle and play with her after she eats instead of pumping for 20 minutes. I have time to play superheroes with my sons. I can sleep for a five-hour stretch at night and partner with my husband to feed Elsa.

Not everything about motherhood is natural or instinct. Sometimes things don’t go as you planned. Mothers and infants need to learn from each other. Just as any relationship develops so does the relationship between a mother and infant. It takes time and it takes persistence.

 

Prader willi

Sixth Sense

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Photo by Garon Piceli on Pexels.com

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.