Missing, Meeting, and Managing Milestones

Missing, Meeting, and Managing Milestones

Lyra is now 6 months old. That means almost every doctor she sees wants to check in with her (Genetics is the only exception). At every appointment I am asked about her developmental milestones. Now, we knew from the moment we received her genetic diagnosis that there are milestones Lyra will miss, or never meet. We are okay with that. It’s not easy, but we are okay with it.

Missing: I figure I will start with the negative stuff. Lyra is behind physically. She doesn’t use her arms very much (although we had some progress today), she doesn’t bring objects to her mouth (she isn’t a fan of chewing on anything except her own fingers), and she doesn’t sit up on her own. There are other things too, but physical therapy is working with us every week. It is what it is and she will develop at her own rate. She may never “catch up”, but she will do just fine.

Managing: Okay, Lyra isn’t “managing” anything. My husband and I are. One of the biggest milestones we are managing is sleep (hers, not ours). Now, I have found many posts about 6 month sleep regression. I am not sure how much I buy into the idea, but it is a PAIN to put her down for a nap and at night. She has never been a great sleeper, but it seems to be getting harder to get her down. Now, before you comment that I need to let her fuss it out and self sooth, keep in mind that is not an option for us. If we let her fuss it out, she just pukes. All of the doctors and other professionals we work with do NOT recommend we let her fuss it out. So, I just prepare every night and have some good books on tape I listen to on headphones. Also, I have asked some other tubie mommies and they have said they do the something similar.

The other thing (not exactly a milestone) we are managing is expectation…. both ours and others. Sometimes it is hard to hear “she will do x, y and z” only to work with her for weeks and not see those things. However, it does make it that much more excited when she does meet a milestone. We also, sometimes, have to manage other people’s expectations and remind them that she is not your average child. But, like I said before, she will do just fine.

Meeting: Now for the really positive stuff. Cognitively, Lyra is right on! We are very excited about this…. Well, we are until we realize that is totally learning how to manipulate us (especially mommy). She’s learned to say “Mama”, but only when she cries. I am not totally sure it is intentional, but it really does sound like it and she pulls at my heart strings sometimes. She has also learned that, around the right people, if she fusses just a little, we will pick her up. We are learning when she is faking, but there have been a few times that we have realized she has made suckers out of us.

Lyra also has started trying solid foods! This comes with some new challenges, and she doesn’t take anywhere near enough for us to alter her tube feedings, but she is willing to put solids in her mouth. This is not always the case with tubie kids.

So, all in all, things look positive for our little one. While we still have struggles, some our totally average (like her current cold), she is growing and smiling.

 

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There has to be a better way……

There has to be a better way……

Lyra is almost 6 months old!!!!!!  While I am super excited about this, I am also dreading the next 3 weeks.  6 months is a major milestone, especially for doctors. This means that EVERYONE (except Genetics) wants to see her and run additional tests.  For most kids, 6 months means a check in with the pediatrician and some shots. For Lyra is means visits with:

  • Surgery Clinic (with an ultrasound)
  • Cardiology (with an EKG and an Echocardiogram)
  • GI
  • Pediatrician (with shots)
  • Ophthalmology (no idea what tests they will want to do)
  • Urology (with an ultrasound)

Oh, and she has OT and PT appointments every week (at least these ones are at home).

Instead of having so many appointments spread over three weeks, there has to be a better way of doing this. At least they could maybe coordinate their requests for tests (I have ultrasounds on two different days). The worst part is, while I find this overwhelming, when she hits 1 year it is only going to be worse. At one year she will have all of these again plus a few more.  It’s not that she necessarily has a major issue with all of these systems, but because of her genetic diagnosis she has to monitored by a few people.

There has to be a better way.

At moments like this I wish that they could just check us into the hospital for 24-48 hours and let everyone come to her. We can run all of her tests back to back and then doctors can come to her bedside for examinations and to talk to Mark and I. She would only have to do vitals once (something she hates), we would be able to stick more closely to her feeding schedule, and we would all be able to get more sleep (messing with the nap schedule is always a BAD idea). Also, if we need to add another specialist (as often happens), she is right there! It’s not hard to get another consult when you are already in the hospital. I know that it may not be realistic, but there has to be another way to do this.

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Post Nap Smiles

I Can’t Fix Everything

I Can’t Fix Everything

The biggest lesson that I have learned as a mom is that there are things that I can’t fix. Sometimes, I can’t “make it better.”  All I can do is comfort my child and hope for the best. I am sure every mom, regardless of their situation, has felt this way. Mommy can’t undo a skinned knee. Mommy can’t make the cold go away. Mommy can’t stop the reflux or throw up. Mommy can’t undo the nasty thing the middle school girl said. All we can is hold our babies and let them know we are there for them.

Last night I had a bit of a break down over this. For almost a month now Lyra has had trouble tolerating her continuous feeds at night. These feeds are CRITICAL because she simply can’t take in enough volume during the rest of the day, and she has to sleep. It is my understanding that almost all tube fed kids have continuous feeds overnight. I have tried many things including:

  1. Slowing down the rate of her feeds
  2. Doing a faster rate with long breaks
  3. Adding medication to help her stomach expand
  4. Adjusting her sleeping position (she just rolls back on her back)
  5. Venting
  6. Asking other tubie moms if they any ideas
  7. Calling her doctor

Things will work for a few days and then we will have another bad night where she pukes. Now, if she only pukes once every four or five nights, no big deal. But she has puked the last 5 nights in a row. Last night was a bad one. She puked at 2:20ish AM. The first puke was formula. Mark and I rushed in, one grabbed the baby, the other cleaned and re-prepped the bed (we have this down to an art, but I have no idea who did what last night). I then spent the next 45 min with a screaming baby who is puking, not formula, but mucus. This is when I started crying. I couldn’t make it better. I would happily to throw up 10 times a day for a month rather than have my daughter go through this. It breaks my heart, and I can’t fix it.

5 burp cloths, 1 sleeper, 1 blanket, and a new tee shirt (mine) later, I finally got her to calm down. However, I could hear the deep congestion and her breath rattled like a kid with a really bad cold. I couldn’t lay her down. She was so congested she would just puke again. So, I sat and rocked her until her next feed was due to start (4 AM).  I didn’t sleep much after that. Every little sound sent me to the video monitor to make sure she was okay.

I am working with doctors (being that every squeaky wheel) to try to find a solution, but I can’t fix this on my own. Mommy does not have a magic wand. All I can do is pray tonight will be better, even if I am oh so anxious that it won’t be.

(P.S. Lyra is doing well in general: gaining weight and growing. This is just a small (annoying) piece in a big puzzle)

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Lyra and Nico (Cousins)

Never Underestimate a Qualitative Analyst

Never Underestimate a Qualitative Analyst

Before I get going, let me just state that Lyra is finally home and doing great.  Not to toot my own horn, but it had everything to do with my strategy to feed her and persistence to get GI involved in the hospital. This is directly relevant to my title.

By trade, I am a Qualitative Analyst. Don’t get it confused with a Quantitative Analyst, those are the number crunchers. I deal with words, not just numbers. Now, data analysis is important and often plays a role in qualitative analysis. The difference is, I work with things that can’t be quantified. I take information from various sources and tell a cohesive story. I answer the questions, “So what?”, “Why is this relevant to me?”. I also use that information to propose solutions to complex problems. Many people (including my sister) have been baffled about how to apply this skill set in and out of the work place. So, let me put it in context of caring for Lyra.

Lyra has many people who are on her team. Her care (outside of family) involves an occupational therapist, dietician, gastroenterologist, cardiologist, surgeon, pediatrician, geneticist, and we will be adding physical therapist in the near future.  All of these people orbit Lyra and have opinions and insights to her care. However, they do not all communicate directly and the only common denominators are Lyra and myself. I am at EVERY appointment. Part of my job as her mom is to take the information that each of these caregivers, along with my own observations, and present it in a way that makes sense to everyone. My job is to tell the story that is “Lyra” that goes beyond test results and numbers on a paper.

According to test results, Lyra should not have been throwing up while getting NJ feeds. Also, according to test results, she should have been able to handle the volume/hr of formula the surgeons were prescribing. However, Lyra WAS puking and Lyra was NOT tolerating the volume/hr of formula she was being fed. Looking at the problem a few things came to mind:

  1. I know Lyra has trouble adjusting to rapid changes in volume. I have been puked on enough times to have solid evidence of this
  2. Her dietician had mentioned that, with cases like hers, you often can only increase feedings by 1 mL at a time
  3. Genetics has told us that most rules probably won’t apply to her since we have no idea how she will be physically/mentally impacted by her genetic abnormalities
  4. GI had previously told me that we will likely have to go by trial and error with her. If something doesn’t work, we just have to try something new

Using this information (mostly 1&2), I was able to come up with a solution for feeding her and present to the surgical team in a rational way. Was I sure that it would succeed, hell no. In fact, I anticipated it would fail. However, it has been about 6 days, Lyra is HOME, she is tolerating the total volume she needs every day, and she has only thrown up 3 times since we started using my method. What we had been doing wasn’t working, and we needed to try something new. Even the “wait and see” method had been tried and failed. With my professional skill set I was able to take the information from multiple sources, put it in context, and solve a problem. I didn’t spread sheets, or complicated equations. I took words from many sources, told a story that was relevant to audience, and proposed an information based solution. Because of my qualitative analytical skills, my daughter is home.

So what is a Qualitative Analyst? It is someone who using words, not just numbers, to tell a story and come up with solutions. In today’s world of big data, never underestimate the power of a Qualitative Analyst.

A Love Letter to Nurses

A Love Letter to Nurses

This is for the 30ish (give or take a few) nurses who have helped take care of Lra up to this point.

Dear Nurses,

I love you and thank you. Now, don’t get me wrong, the doctors are great. But you were the one who rocked my two-day-old for hours in the middle of the night when I couldn’t be there. You are the one who stood vigil by her side after a scary day at another hospital. You were the one who showed me how to change her diaper without making a total mess. You were the people to show my husband and I 10 ways to feed and burp her. You were the ones who hugged me when I melted down by her bedside. You were the ones who made sure I ate and drank…. and sometimes slept. You were the ones who helped me at 2 am clean her off…. and me off….. after she puked for the 20th time that day. You were the one who stood up for me when doctors didn’t believe me. You were the one who allowed to me sleep peacefully when I couldn’t be there. You were the one who fed her patiently when I felt so discouraged. You were the one who made sure I knew how to do CPR and how to feed my baby with a tube. You were the one who listened to me when I knew something wasn’t right. You were the one up all night with her while I slept a few feet away. You were the one to put hearts on her cheeks after she had surgery. You were the one to change her diaper when I couldn’t due to tubes. You were the one who diligently checked her vital signs around the clock. You have done all of this, and a thousand other things I can not name. I have watched you take tender loving care of daughter. For that, I love you.

Love,

Jaime and Mark

Nine Days and Counting

Nine Days and Counting

I am sure some people wonder how I can go home every other night to sleep (Mark and I trade off), but the reality is we have to. This is a distance race, not a sprint. We have been in here for nine days now and progress is slow. Mark and I need to have nights where we sleep through the night because sleeping at the hospital is brutal. If she isn’t waking us up, nurses coming in to do vitals are. They try their best to be quiet, but we sleep so lightly. The “beds” are far from comfortable and we are always worried about her puking. She pukes a lot. Those nights at home are key for our health.

However, those nights are hard in their own way. Right now we are living in a 450 sq. ft. house. Our main room contains a small couch, the glider we rock Lyra to sleep in, her changing table, her crib, and her swing. Some of her cloths are in our bedroom and her shampoo is in the shower. The thing missing is her, and there is no way to escape it. Most of the time I deal with it okay, but this morning was tough. I just want my baby home. I know she needs to be in the hospital. I know it is the best place for her. And I KNOW we made the right decision for her to have surgery. But frankly, the whole situation just sucks.

I miss laying down and playing on her play mat with her. I miss rocking her to sleep at night. I miss seeing her little face light up with awe whenever we would go outside (she is hooked up to too much for me to take her out here). I miss watching my family play with her. I miss swimming with her, or even just watching her wiggle and squirm in the bath tub. I miss putting her in her jumper and watching her talk to the lion. I miss carrying her around in her moby wrap.

I miss getting her dressed.

Right now she has so many things hooked to her that it is almost impossible to dress her. We have tried a few times and modified a few items of clothing, but she just ends up puking on them within minutes. I can’t even count the number of towels, burp cloths, and blankets we went through yesterday.

This morning was just tough. I just want my baby to come home. She is getting better, but it is painfully slow. Not only does her digestive system have to re-learn how to work, but it has to learn how to work correctly (something it has never done before). Her intestines have figured it out; now we are just waiting for her stomach to get with the program. It’s a long slow process and we are looking at at least another week here. Other days will be easier. At least today she has mostly sleep and have only puked 2-3 times. It is a better day for her, Mama will find tomorrow easier.

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Lyra and her new apple hat. Thanks Dawn for making her such a cute hat!

“Yay, a Fart!”…. Something I Never Thought I’d Say

“Yay, a Fart!”…. Something I Never Thought I’d Say

Okay, I never thought I would be so excited about a fart. Well…. three farts to be exact. Why am I excited? Because it means that Lyra’s pipes are starting to move again! This means taking one of the tubes out of her nose and being able to ween her off of IV fluids. One happy Mamma!

To catch some of you up, in my last post I mentioned that Lyra needed another surgery. Well, about two days later she stopped being able to keep anything but pedialyte down. While we were able to keep her hydrated, she wasn’t getting any nutrition. On Sunday the decision was made to admit her to the hospital and for her to have surgery ASAP. They tried to fit her in Sunday night, but she ended up not having the surgery until Monday afternoon. Due to some other tests they had to run, she was under anesthesia for over six hours. It was gruelling for Mark and I, but luckily my parents were there to keep us distracted (we will have to have a Hearts rematch later). Lyra did  great during the surgery and has been recovering really well.

Out of surgery she had three tubes. One goes down her left nostril, past her stomach, and past her duodenum We will be using it to feed her now that her intestines are waking up and are moving again (she just started getting 3 mL/hr in that tube). The second one, down her right nostril, was draining fluid from her stomach to reduce pressure on the areas where they performed surgery (they were able to take that tube out this morning). The third tube is her G-tube, which is currently just being used as an additional drain. Once we know she can tolerate her food and things are really working, we will start to feed her through this tube.

Since surgery she has only had to have four or five doses of morphine. Other than that, she has only been on tylenol and ibuprofen for pain (not bad for having your intestines mucked around with). She has had moments of smiling and playing. Her current favorite thing to look at is a giant dragonfly balloon that Grandma brought in yesterday. She has also been sleeping soundly when she sleeps. As I mentioned at the beginning, there are signs that everything is starting to move again! She farted a whole three times! Now we are waiting for her to actually poop…. I have never anticipated someone else pooping so eagerly in my life.

Anyways, the point is, she is recovering well.  She will likely be in the hospital for at least two weeks, but it’s for the best. She is well taken care of here and Mark and she has lots of eager visitors. Thank you everyone who has reached out to offer support.

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Lyra right after surgery

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Lyra yesterday (I couldn’t resist putting a bow on her)

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Lyra today… Good Morning Mommy

(The brace is just so she won’t pull her tube out. She has been trying)

P.S. I do have more photos like the series from her last surgery, I just have to use a different computer because mine is having issues with downloading photographs from my good camera.

Prepping for Surgery and a Note From a Friend

Prepping for Surgery and a Note From a Friend

For those of you who don’t know, we are back in the hospital already waiting to have surgery. Lyra stopped tolerating her formula, and she couldn’t live on pedialyte. Upon admittance yesterday we were told they were going to have her go in for surgery ASAP. There was the potential for it to happen last night, but now it looks like it will happen this morning.

A friend of mine sent me the narrative below (in bold) the other day, and I wanted to write about it. She did not write it, but it really struck me. I was thinking about it quite a bit last night, but fell asleep before I could write about it:

Some Mothers Get Babies With Something More
-Lori Borgman

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn’t matter whether it’s a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that’s what she says. That’s what mothers have always said. Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.

Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but we mothers want what we want. Some mothers get babies with something more.

Some mothers get babies with conditions they can’t pronounce, a spine that didn’t fuse, a missing chromosome or a palette that didn’t close.

Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can’t be possible! That doesn’t run in our family. Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing; it’s a wondrous thing. The athletes appear as specimens without flaw – rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.
As I’ve told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there’s no such thing as a perfect body.

Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it.

Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists hammering in your ear. I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy pieces like this one — saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this. You didn’t jump up and down in the motherhood line yelling, “Choose me, God! Choose me! I’ve got what it takes.” You’re a woman who doesn’t have time to step back and put things in perspective, so, please, let me do it for you.

From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule.

You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability.

You’re a neighbor, a friend, a stranger I pass at the mall. You’re the woman I sit next to at church, my cousin and my sister-in-law.

You’re a woman who wanted ten fingers and ten toes, and got something more. You’re a wonder.

The part that got to me last night was, “You didn’t volunteer for this. You didn’t jump up and down in the motherhood line yelling, ‘Choose me, God! Choose me! I’ve got what it takes.'” While there is much in motherhood that no one signs up for, there are moments when I think, “I really didn’t sign up for this.” Those moments, for me, have nothing to do with anger. They don’t happen when she pukes on me for 8th time that day, or when she is screaming at night and won’t sleep (although those moments I have other thoughts…. a particular book comes to mind). No, I think that when I am getting news that something else is wrong with her, when I am holding her down and she screams while the perform another test, or when I sign more consent forms for surgery.

I am sure I will think it when I hand her to the nurse and watch them walk into the operating room. I will think it every minute for the 3+ hours the surgery will take. I will think about it when I see her right afterwards. And I will likely think it every day we are in the hospital this time (it could be weeks).

While I may not have signed up for it, I can’t change it. I am not a hero. I am not any more than any other mom. I do what my child needs, and what is best for her. Sometimes, she just needs a little more.

More Answers…. More Surgery

More Answers…. More Surgery

The results are in from the Upper GI test we had done yesterday and the provide us with some important answers as to why Lyra has so much trouble keeping food down. Unfortunately, it also means that she is going to need more surgery. We knew that she needed surgery to have the G-tube placed. However, the Upper GI has revealed that she also has a narrowing of her upper small intestine (duodenum). The condition is called duodenal stenosis and hers requires surgery to fix. At this stage, I don’t have an exact date for when surgery will happen. We are hoping for September 14th. I don’t have more information to give, but I have provided some links below with additional information about the condition:

The Blessing of Family

The Blessing of Family

I am one of those people blessed with a supportive family. That is not to say that we don’t have our own conflicts, lord knows we do, but at the end of the day we support each other. For me, yesterday was one of those days that I needed a little extra support. Most days I deal just fine with Lyra’s diagnosis. I put my head down, take care of what she needs me to take care of, and I try to keep a sense of humor about things. Other days I find the uncertainty overwhelming and sad.

All parents have dreams for our children. We look forward to taking that picture on their very first day of school. You know, the one where the backpack is so big compared to their little bodies that we are worried our little one is going to tip over. We look forward to their first words, tottering steps, and their first birthday cake all over their cute face. I looked forward to her first swim meet and sharing a sport that I love so much with her.

Then I am reminded that she may never do any of those things.

She may go to “school” at some point, but it will be nothing like what the average child experiences. While she will likely speak (she is very vocal right now), she will likely struggle to make herself understood. Forming words and/or sentences is listed as a challenge with both of her genetic conditions. She will likely struggle to walk, let alone run. And birthday cake….. yesterday we met with the surgeon to talk about putting in a G-tube (information below). Unless sometime really changes with her eating, that cake will not be on her face. Everyone around her will eat it, but she probably will show little, to no, interest. Lastly, while she already shares my love of the water, swim meets and a swim team may not be in her future.

So, some days I get really sad. And this is where my family steps in. I can always talk to my husband and my family was always available over the phone, but there is something about being able to sit with my mom on the back patio while she plays with Lyra. There is something about sharing a drink a with my brother-in-law. And it is so different to be able to sit on the couch with my sister with Lyra sleeping on my shoulder. The physical presence of family makes all the difference for myself, my husband, and most importantly, Lyra.

Some time in the next two weeks Lyra will be having surgery to have the G-tube placed (we do not know the date yet), and this will be a very different hospital experience than the last three. This time there will be no emergency room, no ambulance ride, and no frantic phone calls to get our lives reorganized. This time it will be planned, and she likely will not be in the hospital for more than a day. This time we won’t have to worry about who is going take the dog. This time I will actually have a bag packed for myself. And this time we will all be surrounded by family.

We are truly blessed to be here.

G-Tube information: http://www.chop.edu/treatments/gastrostomy-tubes#.VeePadNViko