Prader willi, Uncategorized

Which one is not like the others?

Your eyes are still glued shut but your ears are fully awake. It could be a mile away but a new mom has impeccable hearing for her newborn babies cry. You try to ignore the small sleepy coos. Once the babe lets out a deep throat cry bare feet hit the cold floor at 2am to soothe another helpless baby through the night.

I am all too familiar with crying needy babes at midnight. Nursing every 2 hours was what I expected when we added our third baby. I was ready for the house to be full of noise. I was ready to sit up and comfort her for hours just because she wanted to be held. I was ready for the car rides to school to be full of tears and ear piercing screams. Instead there was silence, heart pounding silence, watching for breath silence.

Elsa is not like others. Friends came to visit the first few weeks home and would ask how we were sleeping. How was she feeding? Does she keep you awake? All of my answers were not the common response from a new mom. She slept too well. She never cried. She was force fed. She was not hungry. She was not like the others.

Two physicians asked me questions that left me with a disgusted and probably rude face. I’m not sorry for my response at such on odd question after a diagnosis of prader-willi syndrome.

“Do you notice that she is different from your older boys?” The MD’s were probably asking out of respect and trying to lessen the blow of her condition with such a question. It bothered me. I’m not one to beat around the bush.

As I was trying to keep my two year old out of the office cabinet of gowns and tongue depressors I let out a scoff. “She is different in every way, in every movement, and in every life giving breath. How could she not be different?”

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Four year check up playing with equipment
We all knew what she had in those doctor offices. We all knew she was different. And I love every different part of her. With her small preemie size toes and tiny palms that can’t grip more than a woman’s pinky finger, the obvious to the unseen differences, I fully embrace with bittersweet love.

~*~

2am hit me with a cold breath of night air. That night I woke David as we listened to Elsa let out a small high pitched sound. She was trying to cry. Instead of dreading the surprise awakening we smiled at each other glad to hear she found her voice. We were thrilled she could muster enough energy and strength to express herself, even at 2am.

Most mothers in my generation feed on demand. When the baby is upset, milk is not far from its mouth. If Elsa was fed on demand she would not have survived her first two days of life. We feed on a strict schedule. No, she never breastfed. I can hear the shock and awe of some. She is bottle fed, and yes it’s all formula, a high calorie formula. There is no cry for food. There is no rooting with her mouth, just a clock that tells us her blood glucose needs food and her brain needs the calories to develop.

Elsa still sleeps in her crib by the foot of our bed. My boys were out of my room at two weeks of life. They made so much noise while sleeping I was up all night. Even my ear plugs did little to drowned out the sounds of them crying. The whole house knew the boys were awake. Elsa won’t make a sound, so much I near her crib to see her chest rise and fall with breath. She is almost 6 months old and still sleeps close by.

If left to her own devices, Elsa would lay on her back all day and all night. She would barely move her small frame. The weak muscles barely able to turn her head would not be curious enough to find a familiar face in the room. I work day and night, bath time, feedings, car rides, and sleeping to keep her stimulated and positioned appropriately to develop strength. Normal babies move with fascination of the world without excessive intervention. Elsa will look with desire in her eyes to move but jailed in a helpless frame of low muscle tone. Her emotions are freely expressed in baby blues staring you in the face, a shy smile struggling to emerge. Without the help of a gentle hand on her back she would not turn to see her brothers. Constant assistance is needed for Elsa to meet her milestones.

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We travel monthly for doctor appointments. Elsa could qualify for MVP status on our airline at 5 months of age. I carry her close to my chest through security, on the ramp to the airplane, and hold her tight as we fly into the air. Her eyes stay shut through loud announcements and the rough Alaskan landings. My friendly seatmates, without a doubt, will comment, “What a good baby you have!”. I politely smile and say yes, she is a great traveler. Inside, I chuckle to myself. Low tone babies will sleep peacefully if held. They melt into your arms with soft support allowing them to relax. She is so different than my boys. Crying on the ascent and descent of flights was typical. Lots of entertaining and snacks were necessary to keep them in the small airplane seats. Elsa really is a great flying companion.

Elsa is different. She is the odd man out. I love it this way. She reminds me we are all made with our creator in mind. A bigger than life, more diverse than our small brains can muster creator that formed us to resemble him. How big and how great is our God? Have we searched him and found him? I am reminded daily he is too big to comprehend in this life. We have all eternity to find him out, to know him more, and yet we will never get to the end of his greatness. Elsa is made in his image. She shows me and everyone else she meets a different side of our Lord. And she shows me God is working in our small, seemingly unimportant lives every minute and second of our days. With each rise and fall of her chest, she breaths the life God has given her. She is different and she is blessed. She is beautiful. And she is the Lords workmanship.

Genesis 1:26 Then God said, oLet us make man8 in our image, pafter our likeness. 27  So God created man in his own image, in the image of God he created him; rmale and female he created them. 28 And God blessed them.

 

 

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Prader willi, Uncategorized

To: Friends and Family From: Mom of a Special Needs Child

This isn’t the way I intended life with kids. I didn’t think I would be traveling day six of my infant’s life. I didn’t think I would be in and out of the hospital while questioning the decision to have another baby. I didn’t think I would be running from doctor office to therapy visit to picking up a toddler from preschool all in 3 hours. It’s just not what I thought it would be.

Life used to consist of entertaining toddlers. It was park visits, gymnastics play, beach combing, and play dates. And some, if not most of life, is still made up of these special moments with toddlers. It is now intermingled with a strict feeding schedule, office visits, specialist appointments in different states, and scheduling in daily physical and occupation therapy for their special needs sibling.20180731_080344.jpg

Please give me grace. Please excuse the unanswered text messages, phone calls, and emails. Please excuse the tardiness and slight inattentiveness. I’m working with multiple calendars of a child’s school, family events, church activities, doctor appointments, therapy visits, work schedules, and a small amount of “me” time. My plate is overflowing.

My head space is usually filled with the “what next”. It’s constantly looking at the clock. It’s thinking of every small move my baby makes, looking for cues of discomfort, happiness, any emotion she can barely muster the strength to express. My mind is anxious more often than not. Am I doing enough? Could I be using the awake hours more effectively to help her more? Did I pay that bill? Did I pack him a lunch? Did I brush my teeth?

I would love to have time for play dates, baby showers, church small groups, and coffee with new friends. It’s just not my seasIMG_20180602_085310_930on of life. Instead, I entertain toddlers in doctor offices. My coffee cup is still in the microwave, and chatting with friends is more like chatting with my new bestie, the doctor’s office manager.

When you do see me, please take the initiative. I’m tired. My mind is usually racing from task to task. I want to catch up, but sometimes I’m lacking the energy. Please say hello. Even if it’s only for 30 seconds of conversation. It reminds me that I’m still me, that I still have friends even when I don’t visit much. A small gesture goes a long way in my world of little people.

Thank you to those wading the swift waters with me. Thank you to the Facebook group of friends I’ve never met in person who lock arms with me. And to the mothers who email from around the country to give hope. You truly are inspirational. Together it’s easier to walk against the current. Together it’s easier to grieve, support one another, and celebrate small victory.

Although the day to day is not what I imagined, I couldn’t have asked for more. My house is full. It’s full of love, hope, and yes craziness. Everything has its season. It’s just a stepping stone to another change around the corner. So friends, I’m still here. I’m just in this space. Be patient with me.

 

For everything there is a season, and a time for every matter under the heavens.” Ecclesiastes 3:1

Uncategorized

A Hidden Gem

 

The curl of your eyelashes,

Ringlets of red hair at your ears.

The corners of your mouth turning up to smile,

The eyebrow lift of intention.

 

The glow in your eyes when discovery hits

Your pinky finger, no longer than an inch.

The soft quick breaths of air rising from your chest,

A big sigh of effort when trying your best.

Chunky thighs etched with needle pricks,

And growing toes making big steps.

 

Small movements yet, your eyes show me a bigger world.

You’re going to move mountains my dear.

A force of nature, strength beyond compare.

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Uncategorized

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.

 

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.