The little “normal” moments

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For my husband and I, we truly treasure the little “normal” moments we get to have with Lyra.  There are many things we sometimes feel we have missed out on.  We are yet to hear a true first word, see her point at an object, or watch her take her first independent (and controlled) steps.  There are also little bonding moments we feel like we missed out on.  Things like little naps together have never really been part of our lives for a whole host of reasons.  But every now and then, we get a little window into the world of an average parent, and we just treasure those moments.  They stick with us and we think back on them for days/weeks/months.  One of those little moments happened the other night… morning is more accurate.

About 4:30 in the morning Lyra woke up crying.  While it isn’t unusual for her to be up at that hour, the crying was abnormal.  So, I went in to check on her and she was definity having trouble calming down.  So, I disconnected her from her pump (her feed had finished an hour earlier, so it was safe to do so), changed her diaper, disconnected her extension, closed her button, and brought her into bed with us.  And….. she actually fell asleep…. Now, I may have only had a few inches on bed to sleep on, but I was actually given a chance to curl around my baby girl in bed.

For many parents, little bits of co-sleeping like this are common and sometimes annoying.  For us? We can count the number of times Lyra has slept in bed with us in the last 2.5 years, even for a short period of time, on one hand.  There are a myriad of reasons for this:

  • In the hospital it isn’t safe to co-sleep
  • She typically just kicks us and doesn’t sleep
  • She creepily stares at me while I try to sleep
  • She is connected to a machine or a monitor and it’s too easy for us all to get tangled in the chords causing alarms or feeding the bed
  • She vomits…. all the time…. still

But conditions were just right the other night.  She must have had a bad dream (hence the crying) and was still sleepy. She wasn’t connected to a feed, so the chance of her vomiting was much smaller, and we didn’t have to worry about getting tangled in the tubing.  In the end, all three of us fell back asleep for about another hour before we had to get up.

It was sweet, and normal, and wonderful.  It was one of those little moments that I often crave and rarely get. My husband and I greedily hoard those moments in our memories. I know that it is something so normal, but for us the “normal” moments are incredibly rare.

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Why I share so much about Lyra

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Recently, I have noticed an increase in the discussion about sharing your children’s lives online. Especially the lives of our very little ones. The ethical debate involving the privacy of the child has come up more than once. I also know many people who are just more private about their personal lives. It got me thinking. Are people judging how much I post about Lyra online? I know that I post a lot, and I am unapologetic about it. It has gotten to the point where she has been recognized in the the grocery store by people who know my family members. Given, my family is fairly large and lives in a relatively small community, but it was a little eye opening. While it did make me think about how much I share about my daughter and our lives, it also made me want to explain why I share so much. 

1. A large portion of my family lives in other states:

When Lyra was born my husband and I lived in the Washington D.C. area. No one lived very close to us, and the initial purpose of the blog was just to let everyone know what was going on. As many of my close friends will tell you, I was basically silent about the struggles we were having for the first month of Lyra’s life. After her birth, we couldn’t post “mama and baby are doing great”, because “baby” wasn’t doing very well at all. I tried to be happy and share some moments on Facebook, but I was terrified. Eventually, I felt like I couldn’t keep things a secret anymore and I decided to let friends and family know the truth. I also didn’t want to send out giant group emails or text messages. So, this blog was created. 

2. It’s a place to share information:

Having a child like Lyra has opened my eyes to a whole world that I never knew existed. It is a scary world to be thrown into with a whole new vocabulary that I have had to learn. It also can be a very beautiful place, and I want to share both of things with people. I want to teach people what I have learned, and how to talk about it. Maybe if I teach them, they won’t be so scared if it happens to them or someone they love. I also want to share how beautiful and freeing it can be. While there are plenty of things I worry about with Lyra, there are also things I have let go of. While I was pregnant I worried about…. everything. Things like, “I hope she picks a good major in college” actually popped in my head. I worried about how she would compare to her peers. After all, we all hope to have a child that is exceptional at something. Having a child like Lyra means that I get to let all of that go. Instead, we focus on what she can do, not what she might do. There is a beauty in that.  

3. Sharing Lyra and her story is a way to connect:

I am just going to be blunt. This life is very isolating. None of my friends or family members have ever experienced what we have gone through. I don’t have anyone to talk to who really knows what it is like to be in my shoes. Don’t get me wrong, I have an incredibly supportive family who has really been there for us, but they haven’t been through it the way my husband and I have. I also have lost a number of friends since having Lyra. I don’t know if it the fact that they don’t know how to react to Lyra being special needs, or it simply puts them off, or they think that I can’t be supportive of them because I have so much on my plate. The friends who have stuck around know that I have shared in their joys and listened to their struggles, even from a hospital room.  

While no one in my immediate circle knows what the rollercoaster has been like, there are people around the world who have shared bits and pieces of what I have been through. By writing thing blog, I have been able to connect with them. And who know, maybe one day there will be another child with the same diagnosis and that parent might find my blog. And they might not feel so alone. 

4. She will always be here:

One thing I don’t like to talk about, or even really think about, is the fact that we don’t know how long we get to keep Lyra. While she is doing incredibly well right now, there is no doubt that she is medically compromised. Also, there is literally NO information about life expectancy for people with her genetic diagnosis because she is the first care. To be honest, while I have written these posts with rose colored glasses, the simple truth is that she was really in trouble a number of times during her first year of life. Since I don’t know how long I get to keep her, I want to share her. I want to share her joys and her accomplishments. I want their to be a very public record of this beautiful little spirit who has enriched my life and helped me grow so much as a person. I want to spread the lessons she has taught me about self worth and personal strength. I want to people to see her laughter that is completely contagious. The more I share her, the longer she will be around. My beautiful baby bug who makes everyone involved in her care feel like their lives are a little richer and brighter. 

So, this is why I post so much about Lyra and why I write this blog. While I 100% understand (and support) why many choose not to, I hope they understand why I do.  
Even teenage boys aren’t “too cool” for Lyra.

Sometimes, it’s just hard

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For the most part, Lyra is super fun right now. She has a huge personality and recently has become mischievous and very curious about the places on the other side of the gate (aka the kitchen and the dog food). She crawls everywhere and climbs on anything she can. She giggles, claps and is generally a happy kiddo. She also seems to be gaining weight like a champ – something that has been a constant battle for us. While I am truly enjoying the leaps that she is making… somethings are just hard. 

The other day I was working out at my local gym and saw a crowd of kids about Lyra’s age eagerly waiting for their “tumbling” class to start. It made me sad that Lyra doesn’t get to do things like that. Having her in a class with a bunch of toddlers climbing on things would be dangerous. She would be underfoot since she doesn’t walk. Plus, there is the added obstacle of her tube. She is connected to a feed most of the day, and she is still too small to wear a backpack with her pump in it. That means I am chasing her with the backpack and there is a line of tubing between us (perfect trip chord for an unsuspecting toddler). Before you say, “just disconnect her for class.” Please understand that it isn’t that easy. She gets her feeds at specific times with a specific duration for a reason. It has taken us about 2 years of trial and error to find a schedule that gives her the best chance at keeping food down. Even if we do find a way, down the road, for her to do some sort of class like that, it won’t be with her peers. It will be with children much much younger than her. 

It just… made me sad. I want that for her. I want the social interaction, the independence, and the excitement I saw in the other kids. I want that for her so badly. It’s hard.

Another reminder of how different Lyra is, and her limitations, came a few weeks ago. I was trying to think of places to go with Lyra when the weather isn’t great for playing outside. I thought of a local butterfly pavilion and how much my niece loved it at her age. Then I realized, Lyra wouldn’t be able to see the butterflies. Now, her vision isn’t terrible, and right now glasses would be more of a hinderance than a help. But she wouldn’t see the butterflies… or a plane in the sky… or an animal at the zoo. To her, the animals are just fuzzy blobs that sometimes move. Nothing more. 

I want to see the excitement on her face when an elephant walks by, or a monkey jumps from tree limb to tree limb. I want to see her reach of a butterfly, hoping to touch the colorful wings. Or have to point to one of the hot air balloons that fly out by house. But she is different. She doesn’t see those things. 

Lastly, it is back to school time. While Lyra is still not old enough to be in school, the thought of her being in school terrifies me. I am not worried about missing her (I will), and do not feel an overwhelming need to spend more time with her (mommy needs a break). I worry that, while at school, she will not be taken care of. Over protective? Maybe. But I hear over and over again from special needs parents about how hard it is to get schools to provide kids with the care they need. Hearing the parents talk makes school sound like a battle where you can’t trust who is on your side. And the “guidelines” I see for incorporating your child’s feeding requirements (particularly for tube fed kids like Lyra) are HORRIFYING. For example “make sure it is in your IEP that it is NOT acceptable to simply turn off your child’s pump and not feed them all day.” 

Not

Feed

Them

ALL

DAY

Are you f%#$ing kidding me!!! Obviously this happens enough that the well respected organization I follow on Facebook needed to point out you have to tell the school this. Can you imagine if an average child was withheld food and water all day at school because it was “too hard” to feed them?!? 

So I am scared, and that makes me sad. I think of playing at recess, going to art class, singing songs, story time, making friends, and all of those other wonderful things I did at school. I also think of all the things I could do BY MYSELF while she is at school: grocery shopping, laundry, cooking, or (heaven forbid) consistently going to the gym. OH or maybe getting a part time job (I actually miss having an office job). But I don’t know if I can trust the people I am supposed to hand her over to. From the stories I have heard, I may have good reason not to trust them. 

So, sometimes it’s just hard. I wish she could experience things with her peers. I wish she could experience more of the world around her. And I wish I could send her to do normal kid things without fearing her basic needs wouldn’t be met. It’s just… hard.

But her smile does make it a little easier. 

Did I make the right decision?

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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

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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.  Your 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

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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

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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