Did I make the right decision?

Did I make the right decision?

I think all parents look back at choices they have made regarding their children and ask themselves, “did I make the right decision?” It can be little day to day things, or big life changing things. I believe we question it all, especially when there are unintended consequences. 

For my husband and I, we are frequently making medical decisions. While we do this along with an extensive care team of experts, the final decision is in our hands. Sometimes it’s a no brainer: If we don’t do this, she will die. I am traumatized by the dozens upon dozens of times I have had to hold her down for an IV to be placed while she screamed and cried in fear and pain. Do I regret any of those IV’s? Absolutely not. But it sucked and I did my best not to cry right along with her. 

Sometimes our decisions are more elective. The “this MIGHT help her” decisions. In many ways these are the harder ones to make. When things don’t go well (don’t get me started on probiotics and Lyra) there can be an overwhelming feeling of guilt. We didn’t have to put her through whatever the consequences were. I can’t tell you how many medications and supliments we have tried (again in coordination with her care team) that have either not helped, or have made things worse. 

The most recent decision we made was to have her adenoids removed. Why we decided to remove them is between us and her doctors, but suffice to say it wasn’t a life-or-death situation. Needless to say, things didn’t go as planned. The surgery went smoothly and we were even able to go home the same day (a HUGE deal). She did great for the first 2 days… then the shit hit the fan. It’s now a week and a half post op and she is still struggling. She is having trouble tolerating feeds, not sleeping well, and is generally miserable. For awhile she was also running a low level fever, but that at least is gone. On top of the surgery, she had two new teeth rupture AND it appears she caught a cold like virus. I feel like all she does is whine and cry. My poor baby is miserable and spends hours curled in my lap watching Disney movies. Normally she won’t sit still. I swear the only time she is happy is swimming in Grandpa’s pool. 

The worst part is, she didn’t HAVE to have the surgery. We could have waited longer. We chose to do it in an attempt to relieve some symptoms where we had exhausted all non-surgical options. Were they life threatening? No. Did they greatly impact her quality of life? Yes. So, we wanted to make it better. Having her adenoids removed was our last option. 

Will it help?

I sure as hell hope so, because the level of guilt I am feeling right now is almost overwhelming . As I rock my baby to sleep, hooked up to a pedialyte drip because she threw up so much today, I pray to whatever god may (or may not) be out there that I made the right choice.  I hope that in the long run this will make her life better. Poor kiddo. This was supposed to be the easy surgery. 


Before surgery 

Today 

To the new parent of a tubie

To the new parent of a tubie

Dear new parent of a tube fed child,

Welcome to the club we never wanted to be part of.  None of us planned for this, and we all got here different ways. But here we are.  Chances are your road has been long and traumatic.  Chances are you have spent a long time in the hospital surrounded by nurses, doctors, and various other support staff.  Now you are home.  And it’s really scary.  You are terrified that you will do something wrong.  You are terrified you will make a wrong decision.

It’s okay.

You will make mistakes.

More than once.

We all do.

It will be okay.

I have been the parent of a tubie for almost exactly two years now.  The first year was an emotional rollercoaster, and a stressful cycle of moving into and out of the hospital.  The past year has been much calmer.  We have found a bit of a groove and have been able to stay home.  However, that does not mean I have not made mistakes.  Here is a little sample of some of my shining moments:

  • I have forgotten to clamp her tube causing her stomach contents to drain on me, the rug, the dog, my husband, etc.  It happens at least once a week and I normally catch it quickly.
  • I have “fed the bed”.  Overnight things happen, and you do HAVE to sleep at some point.  I have had the extension disconnect from her button, effectively feeding her pajamas instead of her stomach.  I have a had the bag disconnect from her extension somehow (chances are from her moving in her sleep).  I have also forgotten to remove the cap from the bag before connecting it to the extension, causing the whole thing to disconnect and… feed the bed instead of the child. It happens to the best of us.
  • I have forgotten to start the pump. Nothing is worse than waking up to a full bag of food and realizing your child has missed out on (in Lyra’s case) at least half of her daily calories.  Nothing.
  • I have set her pump incorrectly and given her too much/too little food.
  • I have done something (like look at her wrong) that has caused her to vomit. Everywhere. Again.
  • I have pulled out my daughter’s feeding tube by catching the extension/button/bag on her carseat, highchair, my foot, and the covers of my bed.

I could go on, but you get the idea.  The point is, what you are doing is stressful.  You are in charge of performing a medical task multiple times a day, 7 days a week.  Many times you will be doing this on little to no sleep.  Mistakes happen.  It’s okay.  No one expects you to be perfect.  Cut yourself some slack and just try to move forward.  Move on to the next feed, the next hour, the next minute.  Try to think of ways to make the mistake not happen again… or at least for a awhile.  Here are some of the things that help me:

  • I write down everything feed related.  I have a spreadsheet of what she had each day, and I write basic rate and dose information on a whiteboard to help me remember what to set the pump at.  It’s not perfect, but it helps.  I simply can’t keep all of the numbers in my head.
  • I set alarms.  Especially when I have to add a new medication, I set an alarm on my phone with a note to remind me of why it is going off.  I can’t tell you how many times I have looked at my alarming phone and thought, “what the hell am I supposed to do?”
  • I use a video baby monitor at night so I can check if her tube is still connected without having to physically go in her room.  It’s not foolproof, but it helps and I sleep more soundly.
  • I talk to other parents of tube fed children on Facebook.  We share stories and laugh/cry at our mistakes.  We let each other know that we are not alone and we give advice.

After I have said all of this, I have to confess that I am also writing this letter to myself after a hard week full of mistakes big and small.  This week I have done something to cause my daughter to puke almost every day.  I have set rates incorrectly.  I have left her extension unclamped and made a mess.  I have cried tears of frustration at my own stupidity.  But I need to cut myself some slack and give myself a break.  My daughter is happy, stable, and gaining weight.  It was a bad morning, afternoon, hour, day, week.  But it’s okay.  She is okay.

You will be okay.

So, to the mom, dad, grandparent, foster parent, aunt, uncle, cousin etc. who suddenly finds themselves taking care of a tube fed person: it’s okay.  Know that there are people there to help you.  Know there are other people who have made mistakes too.  Even those of us who have been doing this for awhile make mistakes. You can do it.

Love,

A tubie mom who has a had an off week

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On Her 2nd Birthday

On Her 2nd Birthday

Lyra is 2 years old.

Part of me is still a little stunned that we have made it this far. She is 2.  She is no longer our little baby. It’s almost overwhelming to be honest, and I have been trying to digest it for awhile now. I remember sitting in the waiting room on the NICU at Children’s national when she was only 2 weeks old, talking to my sister, and her saying “when Lyra turns 3 months we are going to throw her the biggest party.” We didn’t know if she would make it that far.  I remember when she turned 3 months old I cried all day because I was happy, but still so scared.  I knew we weren’t out of the woods. Between that point and her first birthday we had another emergency surgery, six more hospitalizations, and more trips to the emergency room than I can count.

I remember trying to be really happy on her first birthday, but it was hard.  We knew she was sick and she likely needed to go back into the hospital, but we were trying so hard to keep her out. At 2 AM on the 12th I took her to the emergency room and we were admitted by 7 AM.  A few days later we celebrated her birthday in the cafeteria at the hospital. The cake I had carefully baked for her remained in the freezer at home. She wasn’t even allowed to try any of the cake my family had brought with them.  It was bittersweet.  We were so happy at how far she has come, but it was hard to celebrate that in the hospital.

(1st Birthday)

But today, she is two. We have had a very different year.  The most important difference is that Lyra has not been hospitalized since her first birthday! …. knock on wood…. Don’t get me wrong, we have had plenty of ER visits (including one earlier this week), but we have managed to keep her home.  In this last year Lyra has learned to use a baby walker, and has grown out of it.  Her new new walker should be here in a few months. She has learned to stand and to cruise along a couch.  She asks to be picked up, and crawls after her favorite buddy (Tyke).  Oh, and she learned how to climb to stairs (and is working on climbing everything else in our house). Many of her medical issues have stabilized, and we have learned how to better manage her GI issues. She is bigger, stronger, and oh such a happy kiddo.

So, today we celebrate her 2nd birthday and how far she has come. Enjoy the images below.  I call them: “It was easier to get good pictures of you before you could move.”

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Cute set up! This will be great.
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Hey, the camera is over here.
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Getting closer
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Okay, but can we sit in the chair?
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Let’s try this angle
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Nevermind….

 

What the Heck is Going On? A Summary

What the Heck is Going On? A Summary

It has come to my attention that a lot of people have been asking my family about Lyra and exactly what is going on.  I realized that there really isn’t a comprehensive explanation anywhere in my blog, partly because things were discovered slowly over the period of about a year.  So, no profound thoughts in this post, just a summary of where we are with Lyra and some resources:

Lyra has 2 VERY rare chromosome disorders called 9p Trisomy and 16p Deletion.  The documents provided don’t address Lyra’s specific duplication and deletion, because there simply haven’t been very many documented cases. Also, Lyra is the first documented case of someone having BOTH disorders. The doctor’s really don’t have any idea what to expect.  When we received the diagnosis (she was about 7 weeks old) we were told that she would have substantial physical and mental handicaps.  While she is doing much better than were initially told to expect, she does have significant physical and cognitive delays.

Lyra was also born with a number of physical abnormalities that were slowly discovered over the first year of her life, during many hospital stays, a few scares, and more tests than I care to count.  Lyra basically has abnormalities in her brain, heart, airways, liver, kidneys, and GI tract. She also has struggled learning to eat, hence her feeding tube.  I won’t give a full diagnostic list (because it’s boring), but I will give some highlights:

Her brain: Lyra has a brain that none of her doctors have ever seen before.  In fact, I can’t even link documents explaining her most significant abnormality because there simply isn’t any information about it.  Lyra has enlarged ventricles (for unknown reasons), a small cyst, and a fused thalamus.  It is the fused thalamus that we suspect causes a number of her issues, and is the biggest challenge for her neurological team.  They simply have not seen anyone who has a fused thalamus without other areas of the brain also being fused.  Also, they normally see other midline issues (like a cleft lip).  However, Lyra only has the fused thalamus. Basically 98% of all sensory input is processed via the thalamus.  It also regulates sleep/wake cycles (probably the reason why she is such a terrible sleeper).

Lyra’s GI tract has been the major challenge.  Lyra has never been able to eat very well (at this stage she takes almost nothing by mouth).  This caused a number of scares when she was first born and led to a NG tube being placed when she was 1 month old, and a G tube being placed when she was 4 months old. While we still don’t fully understand why she doesn’t eat, that really has been the least of our problems.  The simple fact is, her GI system doesn’t work well, and they have no idea why.  Most of her hospitalizations (10 in her first year) have been because her GI system starts rejecting everything for one reason or another.  Even when she is home and doing well, she pukes ALL THE TIME.  It has gotten more manageable, but we haven’t found anything that completely stops it. Our baseline is 1-2 pukes per day (we do a lot of laundry). We have an amazing GI team at our local Children’s Hospital and they are stumped.  However, they haven’t given up.

Lyra’s other issues are minor and monitored by the appropriate specialists.  At last count,  she is under the care of 9 specialists and her primary care doctor. Yes, that is 10 doctors who see her on a regular basis and periodically have her go in for tests (normally ultrasounds).  Oh, and 3 therapists who see her weekly (occupational therapy, physical therapy, and speech/language therapy). Needless to say, she is well monitored.

So where are we now with her:

Lyra has not been in the hospital for just over 11 months (knock on wood). While she is still considered medically complex, she is no longer considered medically fragile. Although her GI issues continue to be challenging, they have been manageable at home. Lyra is tiny (not on the charts for height and just barely 20 lbs), however she is still growing and her team is happy with her progress.  Due to her genetic diagnosis, they do not anticipate she will be very big. As mentioned before, Lyra does have significant cognitive and physical delays.  She does not talk or walk yet.  However, she has mastered whining, crawling and climbing (she gets into everything).  We are actually ecstatic with her progress, especially in light of the prognosis we were originally given.  She is a special needs child, in the same way a child with Downs Syndrome is special needs. She will never “catch up”.  But that is okay.  We take nothing for granted and enjoy every day we get with her (even when she has been up playing all night).

If anyone has any additional questions, PLEASE do not hesitate to ask.  It is okay to ask me directly.  I really don’t mind.

Here are some resources that I frequently refer to:

  • Feeding Tube Awareness Foundation – This organization with its FaceBook page has been a huge help in finding a community.
  • Unique – This group is a resource for rare chromosome disorders. They are working to build an international database to help connect families and conduct meaningful research.
  • Children’s Hospital of Colorado – This has been our home away from home at times.  I am so grateful that we live near this hospital, and that we have such a wonderful team there.

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Lyra with her AFOs

On Hope

On Hope

“… abandoning hope is an affirmation, the beginning of the beginning.” – Pema Chodron, When Things Fall Apart

The first time I heard the parent of a special needs child talk about “giving up hope”, I was horrified. Luckily, I kept listening, so stick with me. The more I listened, the more I realized I was in the process of giving up hope as well.  I have given up hope slowly since we received Lyra’s genetic diagnosis, and more rapidly since we received her neurological diagnosis.  Giving up hope had been incredibly liberating.

When you’re pregnant you are full of hope.  You hope your child will be healthy, do well in school, enjoy books/sports/traveling etc. You hope your child will be successful and independent as an adult. You hope that they find friends, and at least get to experience what an average child experiences. The list of hopes and dreams goes on and on and is different for each person.

The weight of that hope is crushing and can be debilitating for some of us with special needs children. “Hope” can be a dirty word.

The longer I held onto the hope that Lyra would be an average kid, that she would “catch up”, the harder it was for me to enjoy who she was. The more I hoped she would do things physically appropriate for her age (like use her arms, roll over, sit up, or stand), the harder it was for me to see the accomplishments she did make.  The more I hope she says “mama”, the harder it is for me to notice the ways she does try to communicate.

I have had a harder time letting go of the “mama” thing.

I have given up hope that Lyra will cognitively ever by on par with her peers.  I have given up hope that Lyra will reach physical milestones along side others her age.  Giving up that hope has been incredible and liberating. Every time I give up hope that Lyra will be an average child, my eyes are opened to what she is. She is this bubbly little spit fire with her own opinion. She is fast to giggle and loves “peek-a-boo” in all of its various forms. She loves her Sandra Boynton books, like Are You a Cow, but only when she is in the mood to read. And she loves all things music, especially The Wiggles.

Giving up hope doesn’t mean that I give up on my child.  I will always fight for Lyra and do my best to get her what she needs.  I will always try to give her the tools she needs to achieve whatever she will achieve in life. However, giving up hope has allowed me to enjoy where we are today.  Have I fully given up on hope?  Nope.  I still yearn for her to look at me and say “mama”, and mean me. Maybe one day it will happen, and maybe one day that hope will also slip away. Both are okay.

Giving up hope allows you to stop playing the “what if” game, and start playing “what is”.  It doesn’t mean that you don’t strive for more, but you start from where you are instead of where you might have been.  It allows you to move on from the past and leave an alternative reality that only you live in.

I am giving up hope.  Instead I have what is. And that is more than enough.

Words have power, so CHOOSE wisely

Words have power, so CHOOSE wisely

I have debated writing this post, and I am glad I didn’t write a few hours ago. I have considered ignoring this stranger’s comment, and have been advised by some to do so. However, I am sharing it, and sharing how I feel about for two reasons:

  1. To prove that people do say the most ridiculous/hurtful things to caregivers like us
  2. Because if none of us say anything, nothing changes. Sure, we find another store to shop in, somewhere else to eat, a different park to play in, and new activity class. But that doesn’t really solve the problem, and it makes us feel more isolated.

Backstory: About a week ago a Huffington Post article popped up on my news feed on FaceBook about a wonderful photographer, Mikaela Bodkin, and her project “Fed is Best”.  The project is meant to show that it doesn’t matter if you bottle or breastfeed your child, fed is best. I made a comment (something I almost never do) saying:

“This is great, but I wish there were also tube fed children. My baby couldn’t eat and I felt like such a failure that she needed a feeding tube (still does at almost 2). Also, I know a lot of people who have been accused of being lazy because their child is tube fed. No matter how it happens, fed is best.”

I honestly left it at that and didn’t think about it… until today.

This evening, just before Lyra’s bedtime I got a little notice that there was a response to my comment.  Honestly, I wasn’t prepared for what I saw:

“Fine do what you choose. Which means in public don’t say crap to a mom breastfeeding. Don’t ask her when she’s gonna wean don’t suggest she cover. Don’t do it. I’m so sick of FF moms screaming don’t judge me then turning around shaming and humiliating people for breastfeeding. Smh!”

………..

Oh the feels I had.

………..

At first, I was really mad that someone would assume I would criticize them for breastfeeding in public. First, I never said anything negative in my post about breastfeeding at all. In fact, I didn’t even mention it. Second, anyone who knows me knows that I have no issues with boobs (mine or anyone else’s).  We’ve all got them is various shapes and sizes. Really, they aren’t that big of a deal.  Also, when I was pumping for Lyra I had sense of humor about it.  I was devastated that I couldn’t breastfeed, so I pumped. And I had a timer… a cow timer… that said “moo” when I was done.  A good laugh was had by all.

Then it hit me.  I wasn’t really mad about the breastfeeding thing.  Was it annoying and rude? Absolutely.  But that wasn’t the part of her comment that made me want to explode.

“Fine do what you choose.”

do

what

you

CHOOSE

ARE YOU FREAKING KIDDING ME LADY?!?

This was not a choice! My husband and I didn’t sit in our birthing class going, “Bottle? Breast? Ah hell, we will just have a doctor put in a tube!” No. If I had a choice, I wouldn’t chosen to shove a tube down my 3 month old’s nose, or put her through surgery to have one stuck in her stomach. Are you serious? Did you think before you typed that?

Some have asked if maybe it wasn’t directed towards me, and maybe she just made a mistake.  For those of you who have hunted down the thread on FaceBook, you know by other comments that her response was directed at me.  Some other wonderful people also tried to explain to this person that the tube is not a choice, but a medical necessity. The woman didn’t get it.

We always strive to educate the ignorant, but you can’t change stupid.

While we weren’t able to teach this woman why her words were so hurtful, or educate her on feeding tubes, I hope that others can learn from her carelessness. Her words had power, and so do yours.  So choose wisely. I tried to do so when I made my original comment.  I didn’t pick a side or make a comment on the quality of someone’s parenting.  I simply pointed out that bottle and breast are not the only two ways babies are fed, and I wished mine had been represented. To those who came to my defense, your words had power too. And in the end, your words made all the difference.

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Not an average child 

Not an average child 

As Lyra approaches 2 it’s becoming more obvious that she is not an average child. Most days I forget that Lyra isn’t like all other children her age. Honestly, there are lots of times I don’t think about what other kids her age are doing because it simply isn’t relevant to our lives. However, those days are becoming fewer and I am more frequently hearing, “what’s wrong with her?”

Of course, my knee jerk reaction is to say, “nothing.” While that is true in the sense that she isn’t currently sick, what they are really asking is, “why is she different?”  To be fair, the people who have asked know that they are dancing on the line of a sensitive topic and do so with the best of intentions. They are asking to better understand Lyra, and there is nothing inappropriate with HOW the question was stated. I would rather have people ask than stare or avoid my daughter… But a little part of me still hurts when I hear those words.

The past month or so I have had a number of these moments. Recently I went to the zoo with two long time friends who have little boys about Lyra’s age. These two women are wonderful and never make me feel uncomfortable about Lyra. The moment that was hard was when we found a play area where the kids could run around and get the wiggles out after being in their strollers. I put Lyra on the ground in the play area with her ever present backpack. I had hoped she would get to engage with other kids and maybe crawl around a little. As we watched 10-15 other kids run, laugh, and make momentary friendships, Lyra sat at my feet and just watched. I saw other parents notice the tubing sneaking out the bottom of her pants to her backpack. I saw children look at her, then turn away, not interested in making that fleeting bond kids seem to make when running around a playground. 

She was separate.

She was different.

It was hard.

The backpack, her constant companion, is a visual indication to everyone that she is different. Sure, people are starting to notice she doesn’t walk or talk, but she is small so they frequently assume she is younger and shy. The backpack is a sign that says “something is different here.” 

Soon she will be getting another new accessory. Leg braces. Of course I am not self centered enough to put off getting her something she needs. I even picked out cute ones with lady bugs. But it’s still hard. It’s another thing that will prompt people to ask “what’s wrong with her?” It’s another barrier to her blending with her peers. 

Now, there is a flip side to all of this. There are also times when I am frustrated that people disregard the fact that she is not an average child. I know that it seems contradictory to want her to both blend in with her peers, and have her special needs be acknowledged. However, one is wishing things were different; and the other is living with her reality. The reality is that I don’t have an average child. I have a child who still doesn’t say “mama” or “daddy” (or really communicates). I have a child who doesn’t eat the meals I cook. I have a child who doesn’t walk and will likely need assistance if she does. 

But much of the time I try not to think about that. 

I also have a child that learned how to climb stairs. A child who still thinks peek-a-boo is the best game on earth. And a child who throws herself with reckless abandon at the world (and off the couch) because she knows mama and daddy are always there to catch her. 

Raising a Child with a Rare Condition

Raising a Child with a Rare Condition

Right now I am in Lyra’s room, rocking her back to sleep, feeling a bit defeated. This is not a night where Lyra won’t settle. She is one tired little kiddo (thank you swimming). No, Lyra was sound asleep and puked all over her bed. This has been part of her life basically all her life and at times it is devastating as her mama. She just looks so sad when she vomits and she frequently has trouble catching her breath afterwards. Despite working with an amazing team of doctors, nurses and other professionals, no one has any answers or solutions. This is part of raising a child with a rare condition.

Tomorrow is Rare Disease Day. While I tend to try to focus more on the positive than the negative with Lyra, I want people to understand what it feels like to raise a child with a rare condition. Don’t get me wrong. My days are filled with love and joy. Lyra and I laugh a lot together, but there is a side I don’t like to talk about.

Raising a child with a rare condition is isolating, frustrating, and terrifying.

Isolation:

I am one of the lucky ones in that I have a lot of family support. It makes a huge difference. However, I often feel isolated. My experience of becoming and being a parent is so vastly different than anyone else I know. When Lyra was born I didn’t have that special moment of her being placed on my chest and sharing a little bonding moment. The nurses did place her on my chest, but it was with the hope that the skin on skin contact would trigger her instinct to breath. I sat there, dazed, as everyone kept saying in tensely calm voices, “breath baby, breath.” Then she was whisked away.  From that point on, hospital life gradually became more normal to me. While a hospital stay has been an understandably stressful and scary experience for other parents I know, for me it has become a norm.  Inconvenient, yes, but as much a part of life as a trip to the pediatrician.

One of the most isolating things, for me, is that none of the information out there applies to her, or our situation. Keep in mind, Lyra is the first documented case to have both 9p trisomy and 16p deletion.  Also, doctors have never seen her neurological abnormalities present the way her have. This means that there is little to no relevant information what to expect, or how to handle any potential complications. It also means that there is no community for us.  There is no support group for parents like me.  There isn’t another child I can introduce Lyra to and definitively say, “you are not alone.” As of right now, we are an island in the rare condition community.

Frustration:

This leads nicely into frustration. We have no answers.  We have no solutions. The best example I have of this is feeding Lyra.  We have come to the realization that Lyra doesn’t feel hungry (likely due to her brain abnormalities). This means that we will be using the tube for a very long time.  Perhaps for her whole life. To be honest, I am okay with that. What I find frustrating is that we can’t find a way to get her to keep food down. She throws up at least once a day for no apparent reason.  We have literally. tried. everything.  Trust me, we have a great team working with us on this. It is so frustrating to me that in 21 months of trying to find a solution, I feel like I am no closer to figuring out what works for her.  It makes me so sad to see her puke.  Her stomach heaves, her eyes bulge, and she sounds so congested afterwards. The worst it when it happens when she is sleeping, like tonight. She gets so sad and upset.  She just wants to sleep.  I get so frustrated that I can’t help her.

I also get frustrated with how long it can take to see progress with her. This is why I celebrate milestones that she does reach with so much enthusiasm. Although we work with occupational therapy, physical therapy, and speech therapy weekly (yes, that is 3 appointments every week), every skill Lyra learns is hard won.  It took until she was almost a year to get her to roll from her back to her stomach. She was at least 18 months old before she crawled. She still just babbles and only signs when she wants to be picked up. And eating…. well…. if she is motivated she will eat a bit.  However, if she isn’t in the mood there is a better chance of it snowing in Hawaii than there is of getting her to eat.

Fear:

This is the piece that I rarely, if ever, talk about.  Death is a more pronounced presence in my community, and I live with the fear of losing Lyra. Most days that feeling is so small that I don’t even notice it, but it is always there.  The simple fact of the matter is that Lyra is compromised. Many of her internal systems did not form quite correctly. What an average person would likely recover from, she may not.  Also, since she is the first documented case of someone with both her genetic disorders, there could be complications down the road that we can’t anticipate.  My biggest fear is that I don’t know how long I get to keep her. I want to keep my loving and joyful little girl forever, but that may simply not be in the cards.  When I have asked doctors about it, they get very quiet.  They simply don’t know what to anticipate and they cannot tell me that everything will be okay.  So the fear is always there, normally hiding in a little corner.

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Now, is this a complete picture of what it’s like to raise a child with a rare condition? Obviously not.  Anyone who knows me, or is linked to me on social media, knows that this is not the whole picture of our lives. But it is an important part, and a part that many aren’t comfortable sharing.

 

We Do (almost) Everything You Do

We Do (almost) Everything You Do

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

Daily Life with my Tubie

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.