We Do (almost) Everything You Do

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A comment I frequently see from parents facing the possibility of a feeding tube, or moving to a continuous feed, is “My life is over.”  I promise, it’s not over.  It will just be different. With a little bit of creativity, life keeps moving.  Lyra does everything another child does, some things she just does a little differently.  There are four things to you need to make this work:

  1. A backpack – We have 2 designed for her pump, one we got at Costco and modified (aka cut a hole in it) and a cute one I still have to modify.
  2. A Mommy Hook… all moms need a Mommy Hook.  They are amazing.
  3. Creative thinking
  4. Sense of humor

Now that we have our supplies, it’s time to go out and live life.

WARNING: Not all of these pictures are recent because it’s really hard to keep up with her from behind a camera lense.

Even hooked up to her feed, Lyra crawls around and plays in the living room:

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She climbs up the stairs:

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She goes with me to store and rides in the cart

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She plays with her cousins

She even swings at home and in the park

She rides in the car and in her wagon

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She even goes swimming! …. Yes, that is her pump floating behind her in its own raft.

So life is far from over, it just looks a little different.  You just have to get creative about when you go and what you need while you are there.  Sometimes things work.  Sometimes they don’t (there is a reason she has a towel with her in many of the pictures)! But, once you leave the house you discover that there are lots of other people who have been, or are, in the same boat.

 

 

Daily Life with my Tubie

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It’s been awhile since I have written a post like this, but people seem to enjoy the window into our daily life.  I am going to be honest, it’s a little crazy.  A typical week for week for us has at least 3 appointments (OT, PT and Speech Therapy) and a music class.  Add in visits to one of her many doctors, running errands, laundry and cooking… life can be a little nuts.  But the hubby and I make a good team.  So, here is a typical day.  To be honest, no day actually looks exactly like this, but it will give you an idea:

6 am: My alarm goes off.  I made a commitment to myself the night before that I WOULD NOT hit the snooze button, but we all know I am lying to myself.

6:09 am: My alarm goes off again and we get out of bed. Each of us has a set of unspoken tasks. I go straight into the kitchen to make Lyra’s first feed of the day (a small bolus):

1 oz of prune and apple juice+2 oz pedialyte+1 tsp of milk of magnesia= Poop Juice

This lovely mixture is poured into a gravity bag (a feeding bag with a control knob that uses gravity to drip the feed into her tummy) and hang it near her jumper. Meanwhile, Mark works on getting Lyra up and changed. We set her up in the jumper and some Sesame Street and let her feed run for about 20 min.

6:30 ish: Lyra is set up and her feed is running.  Mark goes downstairs to turn on his computer for work and brings up any needed supplies. He then cleans her pump bag from the night before, and I begin to put together her food for the rest of the day.  Mind you, little if anything has been said between the two of us.  We each know what needs to be done and I am very grumpy pre-coffee. We are a well oiled machine at this point. Anyways.  The mixture for the rest of the day is:

5 oz of pedialyte + 1 packet of Real Food Blends (we hate salmon day, but know it’s important)

7:00 am: Lyra (still in the jumper) is hooked up to her pump for the next 7 hours for her regular feed.  She can’t tolerate anything with a reasonable amount calories very quickly. At this point I wash her gravity bag and any other supplies in the sink from the night before.  Mark is busy downstairs working.  I also check her bedding for any spit-up or leaks (sometimes stomach juices leak out from around her button overnight) and change whatever needs to be changed. This is also the time I may (more likely not) start a load of laundry.

7:30 am: Lyra comes out of the jumper for diaper and clothing change.  At this point she normally has her second diaper that is about half her body weight, so she needs a change. Then it is PLAY TIME.  Recently I like to take her to the bottom of the stairs to “visit Daddy” and then I make her crawl all of the way up.  If I am really organized (cough cough), I grab some of her laundry and take it up with us.

8:00-9:30ish: If I haven’t managed to get coffee and a few bites of breakfast in, now is when I do that.  At some point she goes into her play pen while I get myself together a little bit.  For those of you who see me every day, you know that I don’t take long doing this.  I also use some of this play time to answer emails, pay bills, or start something in the crockpot for dinner.

9:30 am: If we are not already out doing something by this time, we better be heading out soon! Lyra needs activities and stimulation.  Sometimes this means we are at her music class or heading over to Grandpa’s to do physical therapy. Other days we are on our way to Costco/Target/King Soopers etc. Sometimes we stay home, but I try to keep things active.

Sometime between 11 and 12: Lyra crashes.  The world has become an unfair place.  Mommy must hold her all the time. Books and toys are evil…. it must be…. NAP TIME!!! I love nap time.  I look forward to it every day.  On good days, I take a little nap too.  Today, I am writing this blog instead.  However, many is the day that I grab a quick bite of finger food and then climb into my own bed.  I can’t do dishes because it wakes her up.  I can’t do laundry because it wakes her up, so I mine as well take a nap!

2 pm: Lyra’s feed finishes and she normally wakes up.  Suddenly the world is a happy place again and my little one is all smiles and spice.  Once she is up WE GO SWIMMING!!!  I have introduced this new activity because it is too cold to play outside and she needs to, once again, get out of the house.  She only lasts about 10 minutes in the water, but it is still worth it.

3 pm: We are (usually) back home and Mark is (usually) done with work. We have family play time (aka, mommy hands off the baby and gets other stuff done…. alone….).

4 pm: We attempt to get Lyra to eat.  This normally involves getting out at least two types of puree (some pre made, some homemade), something crunchy, 2-3 different types of utensils, a cup of water/juice, bib, paper towel, and a dish towel.  Lyra will last for about 10-15 minutes, take about 2-3 bites of everything, then do her best to send food flying all over herself and the floor. Some days she is better, but recently her oral aversion has been really bad and she shows no interest in anything.

5 pm: Mark and I eat dinner.  Yes, I know it is early, but we need the fuel to get us through the rest of the night.

5:20 pm: I start to make her night time bolus.  This is the one she is most likely to throw up as we are using it to try to stretch out her stomach.  The hope is that it will do three things:

  1. Make her stomach big enough so that when it is empty her brain gets the signal that she is hungry.  Right now she doesn’t seem to get that signal.  Even when she hasn’t been fed for 14 hours, she doesn’t show signs of hunger.
  2. Stretches her stomach so that she will hopefully be able to do all bolus feeds and we won’t have to have her hooked up to her pump all day.
  3. Stretch her stomach so the brain gets the trigger to tell her intestines to work harder.  She has trouble with constipation and we think that it is because her system isn’t getting all of the signals a normal GI system would get.

This bolus is made up of:

3 oz homemade bone broth + 1 oz veggie puree + 1/2 oz fruit puree

Making the bone broth takes about 30 hours from start to finish and I can’t buy it commercially.  The commercial stuff has little to no fat and a TON of sodium.  I make it about every other week at this point and freeze it into 1 oz cubes.

5:30 pm: The bolus begins.  Once again, Lyra is placed in her jumper.  This time we put on The Wiggles! I hate the Wiggles, but it keeps her distracted. This time I use a 60 mL syringe and I slowly give her the mixture over 20 mins.  We can’t use the from the morning because the fat and purees would just clog it. I normally listen to Forensic Files on headphones. Meanwhile Mark does dishes from dinner, doses the night time meds, and makes her bag for her overnight feed.

6:15 pm: Lyra’s feed is done, her tummy has rested for 25 minutes and now it is BATH TIME!!!  Most people would assume that I do bath time.  After all, I am the water person.  Nope, Daddy does bath time.  It is one of my favorite things to listen to.  What am I doing? I am getting her room prepared! I get a sleeper from downstairs (laundry has trouble making it back up to our rooms), hang her feeding bag, set the pump with the new volume and rate for her 10 hour overnight feed, turn on her lullabies, turn on her heater (keeps her room at 70 all night), and switch the lighting to the table lamp.

6:30 pm: Lyra comes out of the bath and we put on her diaper (with an extra pad because she pees so much), lotion, and her sleeper. Daddy brushes her hair.  She acts like he is torturing her. We use her tube to give Lyra her nightly medications. Then we “read” her the Going to Bed Book by Sandra Boynton and hook her up to her feeding pump.

7:00 pm: The lights are off and her 10 hour feed has started.  I still rock her to sleep.  Yes, we have been doing sleep training.  We have even been working with the sleep clinic at our local children’s hospital.  This is what works for us right now.

Sometime between 7:30 and 9:30 I get her down in bed and leave the room.  Going swimming helps it be closer to 7:30.  Mark and I spend a little time together on the couch and then crash.  It’s a miracle if I last until 10 pm.  He doesn’t seem to require as much sleep.  At some point in the night we get up at least once to pat Lyra back to sleep. On bad nights she is up anywhere from 3-6 hours, but it just isn’t predictable.

It’s funny, when I look at my day I don’t think I do that much. However, when I write it down it seems overwhelming. For me, it’s just life and a lot more normally happens during the day. However, it is almost 1:30pm and I going to try to catch a quick nap before she wakes up at 2.


Yes… swimming in February in Colorado outdoors. 

Holidays

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The holiday season can be a little tricky for families and kids like mine. Schedules are thrown off (something much more challenging than for an average child), the typical sensory overload (also frequently more challenging for special needs children), and exclusion.  Yes, I said exclusion.  At a time of year that is about togetherness, understanding, celebrating humanity, and love I have read heartbreaking story after story in my support group of children and families being excluded because they are different. To be honest, I have had my own struggles this season with feeling a bit blue when I reflected on the friends that have drifted away since having my daughter.

Then tonight happened.

Keep in mind, tonight is Christmas Eve AND the first night of Hanukkah.  In my household we celebrate both holidays because my husband is Jewish.

Tonight dinner was at my aunt and uncle’s place.  Let me paint the picture: There is my little unit (hubby, Lyra and I).  My divorced parents who have rediscovered friendship in the past 5+ years. My sister and brother-in-law, each with two children from previous marriages (ages 16, 13, 8, and 5).  My brother, my cousin, and my nephew’s friend.  Add into it that I was raised in a secular, non-religious, household; my husband is Jewish; and my brother-in-law is Episcopalian.  Some people in the group are very liberal while others are quite conservative. Sounds like a recipe for disaster, right?

Not so much.

After the the Christmas toast we listened to my husband recite the prayers and watched him light the candles. Before eating, my brother-in-law said grace. In our household,it doesn’t matter what you believe, there is nothing wrong with being grateful for what you have. The 16 year old and his friend sat with the 5 and 8 year old like it was totally normal.  And there was a place for my non-eater at the table, and she even ate a little bit.

My point is, my daughter couldn’t have been born into a better family. While I hear again and again about children with tubes being purposely excluded by extended family members, I know that will never happen with my child.  I also know that the inclusion extends well beyond my family who lives near us. I could take my daughter to my great aunt and uncle’s house and she would be just another one of the babes crawling around. Not a single one of my cousins would fear her or her medical needs.  And they would never prevent their children from playing with her.

My family is a group of people that believes it is okay to be different.  It’s okay to have different thoughts, beliefs, interests, etc. It’s okay to take a different path in life or to stumble along the way.  It’s okay to need help and it’s okay to have to do things in another way (like eat). We believe in being kind and inclusive. Basically, the only not allowed in my family is being an asshole.

Are we perfect?

Far from it.

We have our own little conflicts.  But in the end, we are all family.  My daughter is so blessed. She will never know anything but love and inclusion from those closest to her. And I am so lucky to have these people around me.

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Lyra, her uncle ,and her daddy

Fitting In

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For those of you who know me well, it will come as little surprise to you that I have always struggled a little bit to fit. I have few close friends and am totally okay with being on my own.  However, becoming a mom has changed things a bit, and becoming a special needs mom has really changed things. I figured that, once I became a mom, I would meet all these other moms and we would do mom things. I would find my tribe and we would do lunch, coffee and playdates.  I would find my group of moms that I fit in with and we would all have the common ground of being a mom.

Well, as we all know, things didn’t go quite to plan.  I didn’t make it to the new mommy meetings organized by the woman who did my birthing class. I didn’t go to a mommy and me swimming class. In fact, I didn’t go out much at all with her for the first nine months to a year.  I also pulled away from some of the friendships I had pre birth.  It was painful to talk about what was going on, I was ashamed* the I couldn’t keep her out of the hospital (please read my footnote before reacting to that statement), and it was stressful trying to learn how to care for a medically complex child.  To make this more complicated, we up and moved across the country when she was only three months old.

Slowly I did reach out to groups of people via facebook.  Initially it was groups of people with feeding tubes.  At the beginning those groups were both helpful and frustrating.  People have tubes for an exhausting list of reasons. I wanted to talk to moms that had been through exactly what I was going through. Even though no other person has Lyra’s exact diagnosis, I at least wanted to talk to parents of children with one or the other. I wanted to find a place where I felt like we fit in. I did reach out to a few groups and was turned away because Lyra had two genetic conditions, not just the one the group focused on.

In the end I ended up turning back to my feeding tube groups and told them what happened. The response I got started a slow process of changing how I viewed this whole fitting in thing.  I had moms invite me into groups focused on other genetic conditions because it was “about support and inclusion, not exclusion and feeling more isolated than we already do.”  I also started to notice how other parents reacted to Lyra.  Of course, I got the people who were totally freaked out by her and acted as if her condition was contagious. But I also noticed how many people who just met us where we were that month/week/day.

While it has literally taken months for me to get it, I have realized that it isn’t about fitting into this group or that group.  The people who matter will make space for you.  They don’t judge you (or your child) for not being at the same place their kid is. They don’t care that your child has “attachments”. They make space for you in their lives without expectations, judgements, or pity (I hate pity).  They celebrate every milestone with you, no matter when it happens. And in the end, you realize you actually have more common ground than you thought (teething is the great equalizer).

So once again, I am okay with not fitting in.  I never really have fit into one group or another.  I shouldn’t expect to now. But I have learned to keep an open mind and watch for the people willing to make space, and to ignore those who want me to fit into one predefined.

Trying to get a picture of my “monsters” at Halloween

  • On being ashamed: Let me be clear, I have never been ashamed of my daughter. For a time, I felt like a failure as a mom that I couldn’t keep her out of the hospital.  I felt like I wasn’t qualified for the job.  What I quickly learned was that knowing when Lyra needed more serious medical intervention was one of my strengths, not a weakness.

Sometimes, I just don’t want to fight for a little while

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Parents of special needs children experience battle fatigue. It’s something we don’t often talk about, not even to each other, but it’s there. It get mentioned on the walls of support groups in passing, but often we feel like we need to “buck up” and keep moving.  And we do. But there are times when we just want a break from fighting certain battles.  We just want a short respite so that we can enjoy everything else about our child without the dark cloud hanging over our head. We are always fighting behaviour challenges, medical challenges (often the two are linked), insurance companies, state/federal support systems, schools, doctors, hospitals, other professionals.. the list goes on and on.  Sometimes, we just want a break from it all, not to get away from our child, but to enjoy other things about them.

Right now it is 2:24 AM.  I have been up since 12 AM with Lyra and she is currently sitting in her crib clapping for herself and giggling.  Cute, right?  Not so much. We played this game last night and a different version the night before. In chunks here and there I am getting enough sleep, but I am exhausted. While Lyra has never been a great sleeper, the last 4+ months have been hell and it impacts every aspect of our lives.

I fight Lyra every day, more than once a day, to go to and stay asleep. It isn’t just a nighttime problem. It’s a nap problem too. She can have dark circles and glazed eyes, and it doesn’t matter. She won’t sleep. I have read every articles I can find, I have reached out to every single one of her doctors.  I HAVE A FLIPPING SPREADSHEET so that I can do statistical analysis on what works and what doesn’t…. The spreadsheet has proven basically worthless.

Lyra

Doesn’t

Sleep

….and no one seems to be able/willing to help us….

I have brought up the topic over and over again with almost all of Lyra’s doctors.  They smile, shrug, and typically say nothing.  To be honest, I don’t think any of them believe me when I say it is really this bad. If they do say something it’s:

  • “It’s a phase, she’ll grow out of it.”
  • “Every parent goes through this.”
  • “You just need to do more sleep training.”

What I hear is:

  • “It’s not my problem.”

It doesn’t matter that I point out she has always had sleep issues and they are progressively getting worse. It doesn’t matter that I explain there are some limitations to what sleep training method we use (vomit on the walls is NOT a new interior decorating trend). They clearly don’t believe me when I explain how diligent we are with her bedtime routine. We even read the same stinking book! I can see it in their faces that they believe this is somehow our fault and there is nothing they can do to help.

What they fail to appreciate is how this impacts our family as a whole. I am not just talking my immediate household either. It has changed how we do family dinners with the other 3 households we live near. It has impacted how I plan (or don’t plan) outings during the day with family members or friends.

I am so worn out from fighting with this issue.  It takes away so much from our quality of life and it distracts me from all of the wonderful things about my daughter. I just want a break, not from her, but from the fight. I want to forget the sleep issue for 24 hours and just enjoy everything else about her. I have battle fatigue.

But there is no one else who can fight the fight for us.

*** This post was completed at 3:07 AM and she has moved on from clapping to blowing bubbles.  Lyra finally fell asleep at about 3:45 AM. ***

Some articles:

To my friend

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Pediatric Nurses week was a month ago…. I think…. maybe more.  I have had this post on the back burner for awhile, but life happened. While more than one friend of mine is a nurse who works with little ones, I want to talk about one in particular. I have known her for about four years and I knew she was a nurse.  I knew she worked with kids.  But I really had NO idea what she did.  In my head I pictured the nurse at the pediatrician’s office.  No no. That is not what Jen does.

Jen and her sister were two of the first people to figure out that I was pregnant.  They noticed how green I was at her sister’s baby shower and how far I sat from the food. While I didn’t know it at the time, Jen was always checking on me during my pregnancy.  Just checking in.  She was one of the first people I talked to when we started to get hints that something that might not be normal with Lyra.

She just listened, and provided words of support.  But she didn’t talk about what she did or where she worked.

After Lyra was born, I planned on Jen being one of the first people to visit. But things didn’t go well and we were very quiet about our little girl.  She was struggling and I was scared.

Finally, after almost losing Lyra when she was 10 days old, I sent an email to a select group of friends to let them know Lyra was in the NICU at Children’s National and we didn’t know what was wrong. All we knew is that she wouldn’t eat. It was 3 AM. Almost immediately after sending that message I got a text from Jen.

“I get off work at 7am. I will meet you outside of the NICU. I work on the same floor.”

Jen was a nurse, at Children’s National.  She was one of the few people who really got how scared I was and how sick Lyra was. She also knew that Lyra was in the best possible place she could be.  During our next hospitalization at Children’s National (when this blog started), Jen would check in on Lyra on the pediatric floor. She works nights and knew that I didn’t always stay there. When she had the time, she would pop in and just see how my baby was.

Jen works with GI kiddos and over the past 16 months has been an amazing sounding board and source of information.  She is also able to tell me things that I might not take as well from doctors, simply because she is my friend. She doesn’t sugar coat the reality of raising a child with complex GI/medical issues, but she also points out all the positive things that I haven’t always understood were tremendous milestones for children like Lyra.

“Kids like this fight for every oz they gain.” – Every time Lyra gains weight I think “Jen would be so proud.”

“Sometimes we discharge kids and they are back 24 hours later.  It’s just not always clear what the answer is and why something stops working.” – I thought she was crazy.  Totally nuts.  How could a kid be good enough to go home and be readmitted 24 hours later? …. Then March happened and we did just that.  At least Jen prepared me!

There are many others, but you get the idea.

In the end, Jen is my friend. She is my friend who quietly does amazing things and never brags. I know what Jen does because many Jens have taken care of Lyra (and me).  Remember, she works on the GI floor, so she deals with a lot of “ew” every day. She has been a source of comfort, honesty, support, and humor.  Even if she will never say anything herself, she deserves some bragging.  So, I will do it for her.

To the doctor who told us to expect very little from Lyra Jane

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To the doctor who told us to expect very little from Lyra Jane…. I don’t have anything nice or appropriate to say.

Right after Lyra’s first surgery, when she was about 7 or 8 weeks old, we received the devistating genetic diagnosis. The geneticist sat us down, and without ever looking at Lyra Jane, told us she would have pronounced mental and physical handicaps. He implied that she wouldn’t be social or engaged. He acted as though she would never walk and possibly never talk.

He. Never. Even. Looked. At. Her.

The truth of the matter is that doctors don’t know what Lyra will be like because she is the first documented case of someone having both chromosome abnormailities. What he should have said was: “she will have challenges, but we just don’t know where she will land.” That would have been much more accurate and it would have been honest. However, I seemed like his ego got in the way and he had to have all the answers.

He never examined her, even though she was only 3 feet away. She was just results on a sheet of paper to him.

So to that doctor, Lyra Jane has learned:

  • To use her hands
  • Clap
  • Eat (though not enough to ditch the tube)
  • Roll over
  • Sit up on her own
  • Use a walker
  • Babble
  • And many more things

She is social, engaged, and encredibly loving. While she hasn’t quite figured out how to express herself with words, she is working on it! She also had a sense of humor and cracks herself up all of the time.

And she is one determined little girl.

So doctor who told us to not expect much, here is where we stand just over a year later. We expect nothing, and celebrate everything!