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)

Finding A Community

Finding A Community

I have been thinking about finding a community of people for support outside of the hospital. Don’t get me wrong, my family is AMAZING. The outpouring of support from my family is overwhelming at times. If Mark or I need a break during a feeding (they take at least an hour every three hours), there is almost always someone there to hold her. Also, family members have taken the time to learn how to use her pump and what medications she needs. However, it would be nice to have friends out here who understand what it is like to have a kid with a feeding tube. It would also be nice to have another mom that I can ask . So, I have been searching.  So far I don’t know anyone where I live, but I have found http://www.feedingtubeawareness.org/.

On this site, I found one very key page: For Friends and Family

I wanted to cry reading it because it hit the nail on the head for some of the things I experience and things I wish people knew. It showed me that it’s not just me. So, I have copied what it says below:

Dear Friends and Family,

We want you to understand a little more about what it is like to have a tube fed child. Because often, it means so much more than our child eats differently than other children. Nearly all tube fed children have sensory issues from multiple hospitalizations, invasive testing, far too many doctor appointments and generally not being able to interact with their environment like other children do.

Moreover, children with feeding tubes often have them because of having complex medical issues. The irony is that many children with feeding tubes do not look sick. Many conditions that can require tube feeding aren’t things you can see. See our condition list. However, because they do have underlying medical issues, they may be at increased risk when exposed to germs. Please understand it may take a lot to keep our kids looking and feeling healthy.

Here are some things we would like you to know:

Getting child care for a tube fed child is very difficult
It is not an option to get a babysitter off the street. Many of us spent time in the hospital learning how to care for our tube fed child at home. There is medical equipment that needs to be learned. Feeding schedules hold little flexibility, so start times are often important. Moreover, a number of our children have added equipment for respiratory issues (or other conditions) that require additional training. Even those of us with family nearby may not have family members who are willing or able to learn. We would welcome the support because we all need a break. It might be hard to believe, but quite a few tubie daddies do not even know how to do everything.

If we are going out we need to plan in advance
We need to arrange childcare or for the other parent to be home so that someone can take care of our tubie. Moreover, we need to make sure that whatever is needed (clean medical supplies, formula, medications) are all set up. All that said, we do like to see friends and go out. We appreciate being asked. Don’t assume we will not go. Like any parent, we might have things that come up that require us to change plans.

Some environments can be very challenging for our children
Birthday parties with lots of kids can be loud and boisterous. Many tubie kids are overwhelmed because of their sensory issues. This may lead to crying and vomiting. Tubie parents may want to know a lot more about the environment, the number of people, noise levels so they can vet the environment and weigh how their children will do. Moreover, tubie parents are concerned about exposing their kids to germs. A simple cold for a healthy child may land a tubie child in the hospital. Unfortunately, this is true.

Tubie kids may also get overwhelmed at holiday gatherings where eager relatives rush over to hug or kiss them. It may take them time to adjust to a new environment (and realize nothing bad like a medical test is going happen there). Moreover, holiday gatherings have a lot of food. Some of our kids want to eat, so it can be hard to limit food to what is safe for them. We would appreciate that food be kept out of reach of our kids and that a parent’s permission is received before any food or drink is served to our kids. For ex. Some tubies can’t have thin liquids because it will go directly into their lungs when they swallow, but if offered water or juice they may accept it.

Restaurants are not easy for tubie kids. Any child in a restaurant can be difficult, but tubie kids typically can’t be distracted by food. Moreover, people tend to stare when you bring a child to a restaurant and do not feed them. Wait staff may even take it upon themselves to bring your child food (this has happened to a number of parents who are then left to explain why their child is unable to eat).

We are tired
There are a lot of things that keep tubie parents up at night. There really isn’t such a thing as letting a tubie cry it out. The vast majority of our kids have reflux and crying quickly can lead to vomiting. Kids with reflux aren’t always the best sleepers. Some vomit in the middle of the night. Parents may have to investigate every noise. It could mean our child is in distress, it could mean they are caught up in their tubing, it could mean that their bed is soaked because the feeding tube med port popped open and formula has been flowing into the bed. Moreover, monitors or feeding pumps can and do beep. Add on other respiratory or sleep apnea issues and you are looking at a mom who is wondering when the last time she had enough consecutive sleep to dream.

We can also be emotionally drained
It is hard to see tubes coming out of your child day in and day out. It is a constant reminder they are not like other kids. Some tubie kids are undiagnosed. They have a list of conditions, but docs are still looking for the overarching diagnosis. This is very hard on parents. Moreover, kids may be going through a lot of testing, including testing for things that are life threatening. Families may not realize how stressed tubie parents are. Even with a diagnosis, there can be worry about what the future holds. Moreover, after having child where a new condition appears every few months, you can feel like you have post traumatic stress…you are just waiting for something else to go wrong.

Our level of empathy may have changed
We understand that it is difficult to for you to have a kid who has an ear infection or an infant who needs shots. But, we may not feel the same level of empathy as other parents. We have seen things parents shouldn’t have to see. Many of us shouldn’t have seen our kids intubated and connected to so many wires you aren’t sure how to pick them up (if you are allowed to pick them up). We have exposed our kids to anesthesia, barium, x-rays and prescription medications, often from very early ages. We have had to hand our kids over to surgeons.

We don’t expect sympathy or necessarily want sympathy from you
We love when when people get that this is hard and acknowledge what we do for our kids. The vast majority of us feel like any parent would step up and do the same thing if their child had medical issues. We don’t particularly feel that we were chosen for this based on super special abilities. Everyone can do this, but thankfully most people do not have to. Rather than telling us how bad you feel for our child or for us, try to focus on an accomplishment or acknowledge the challenge. It is great that [Child] is handling this so well. Or I know it must be hard on you [Parent], but you are doing a good job.

It may seem silly to you, but it might be cause for celebration for us if our kids eat even a small amount
A tablespoon can be a reason to jump for joy. A successful new food may prompt a facebook post. We celebrate these little victories because it gives us hope that one day our child might be able to eat and not have to rely on the tube.

A lot of tube fed children eat and drink some, but not enough to grow and develop
Just because you see my child have a bite or two of something, doesn’t mean they can eat or drink enough to sustain themselves and grow. And, a tubie child may turn his head away from the cookie you think he is going to eat. “All kids like cookies!” may not exactly apply here. It takes a lot of work to overcome feeding issues. It isn’t that we haven’t stumbled upon that favorite food our kids want to eat. Believe me, we have tried everything. Also, there are a lot of medical reasons why kiddos can’t eat. Those don’t often go away overnight.

Some of our kids are on SSI, Medicaid or Medicaid Waivers. Many children on feeding tubes are entitled to certain services. Please don’t think we are milking the system or are lazy.
Some tubie parents qualify for WIC, too. Specialized formulas can be incredibly expensive. Moreover, some insurance plans do not cover them and current legislation does not require it in many states. Medical formula can cost upwards of $1000 a month or more to feed a preschooler. On top of that there are copays for doctors, ER visits/hospital stays and other medical supplies. Some medical supplies aren’t covered by insurance at all. Moreover, many tubie families have to have at least one parent home. There are few jobs that have the needed flexibility that is often needed when a child has feeding issues or other medical complexities. So, money can be tight.

Many of us have encountered negativity, inappropriate comments and a lot of staring from strangers. Understand, we may be sensitive. Please think about what you say to us.
People always think kids are cruel, but often children are the most understanding. They ask questions and we are very often happy to explain. Children accept and move on. It is adults that are usually cruel. We have been told to feed our kids in bathrooms or not feed them at all, because it may make others uncomfortable. We may have asked what is wrong with them or shouldn’t they be in the hospital in unkind ways. People think we cruel for making small children wear backpacks or that we have them on a leash if we carry their backpack for them. We could go on and on. Just remember we are talking about how our kids get their nutrition and hydration.

And most importantly, to keep our kids nourished, it is all worth it.

So, I haven’t found anyone in person to talk to, but at least I now have a Facebook group and a website. As always, if you ever have questions about Lyra, her various conditions, and what how she is doing, I am an open book. Just ask.

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

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:

Is Back Always Best?

Is Back Always Best?

I am writing, once again, at 1am. It has been awhile since I have written a post at this time, but I can’t sleep. I guess all moms are up at this time at some point.

Tonight I have been dealing with a complication from Lyra’s NG tube. Lyra has now had an NG tube for over 2 months. As a consequence, she has major problems with congestion sometimes. Basically, the tube irritates her nasal passages causing more mucus to be produced. Moving to dry Colorado has not helped the congestion situation and the problem can become more pronounced when she is laying on her back. Given, Lyra sleeps on a 45 degree wedge, but that isn’t enough when she is congested. Tonight I basically woke to her choking on her own mucus. My husband and I frantically ran around picking her up, turing on lights, disconnecting her feed, and dashing into the shower. After stripping her and getting her (and my clothed self) into a nice steamy shower, her breathing rapidly improved. She has been changed into a dry diaper, given saline drops to loosen the mucus, and wrapped in a new blanket (I skipped the pj’s). After that, she promptly fell sound asleep on my chest. This time she never turned blue (as far as I could tell), but when this happens it scares the living snot out of me.

….I couldn’t think of a better phrase at 1 am….

So now, I am faced with a new dilemma. Do I put her back down on her back, like I am supposed to? OR, do I put her down on her stomach where she is less likely to choke on her mucus? Since before I became pregnant I have preached to that babies MUST be put down on their backs. I understand that, since doctors have started recommending this, the number of SIDS cases has gone down. However, she is gagging on her mucus when I put her down that way, so is it really safer for her at this point? My instinct says, “NO!!!!”. At the moment, she is on her tummy and I am sitting 10 feet away listening to her breath. We have two humidifiers running full blast (and have all night), and she sounds so much better. She is sleeping peacefully with her little hands tucked under her chin.

But the guilt won’t leave me.

I sit here, wide awake, looking at her and wondering if I should just flip her back over. I know that is what the doctors would likely recommend, and it has been pounded into my head that babies must sleep on their back (although they don’t always in the hospital…. that is another story). However, the rational side of my brain points out that, when she gets congested like this, putting her on her back only leads to a scary situation for her and us. At what point is her sleeping on her back doing more harm than good? I don’t have an answer.

So, for now, I sit and watch my little one sleep away, on her tummy. At least, if I can listen to her breath, I know she is okay.

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Her first North Face jacket. Welcome to Colorado!

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Swimming with Uncle Kyle.

She pulled out her tube, so we let her enjoy some “no tube” time.

The “What If….” Game

The “What If….” Game

Before Lyra was born, I played the “what if….” game a lot.

“What if I didn’t hear her cry when she was born?”

“What if she ends up in the NICU?”

“What if I can’t breastfeed?”

“What if she is not okay?”

I continued to play the game after she was born, between her hospital stays: “What if she stops eating again?” etc.

Well, most of things I thought of playing the “what if….” game happened. She didn’t cry when she was born, she spent time in two NICUs, she never was able to breastfeed, for awhile she wasn’t okay, and she did basically stop eating twice.

So, what did I learn?

I learned two things. The first thing that I learned is the answer to all of these questions: I will but on my big girl pants and deal with it. Her not really breathing at birth was scary, but the doctors and nurses took care of her. The NICU really wasn’t that scary of a place. In fact, the second time around I was able to get some sleep while she was in the NICU because I knew that she would be okay. And when she stopped eating the second time, I bundled her up and took her back to the hospital where we figured things out.

The second thing that I learned is that playing the “what if….” game gets you nowhere.  Now, it is good to be prepared for things, but you never know what life is going to hand you. If you keep worrying about what might happen, you may not deal with (or enjoy) what is right in front of you. I could keep playing this game with Lyra now that we have a diagnosis: “What if she can’t walk?”, “What if she has trouble speaking?”, “What if she can’t go to a regular school?”. I know now that this is a waste of my time and energy. The answer is “we will deal with it”. Plus, it takes focus away from everything she is doing now.

Lyra started smiling very early and recently has started to giggle a little (mostly at herself). She is learning to sit up and is developing really good head control for her age. She plays and recognizes my voice/face. Plus, she is getting better (slowly but surely) at eating. So for now, I am enjoying what she does do, and I will deal with whatever comes next.

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Let’s Call Today a “Learning Experience”

Let’s Call Today a “Learning Experience”

Today was ….. interesting….. Lyra has a follow up appointment with ENT at Children’s Hospital.  There had been a little confusion because we thought the appointment was on the 28th, but when we received the phone call to confirm it, we double checked. The office said the appointment on the 28th had been cancelled and her appointment was, in fact, on the 22nd (today).

So, my mom and I prepared. The goal was to be out the door by 10 AM. WE MADE IT! Once we got down to the parking lot, Lyra puked….. So, my mom did a field change in the car while I ran the barf cloths back up to the apartment. After all was said and done, we took off by 10:25ish. We still had plenty of time to make it to our 11:20 appointment.

We get to Children’s and realize that the stroller in in my husband’s car. I ended up just carrying Lyra. The carseat was too heavy.

We then wait for over an hour to see the doctor.  Finally, we get called back and a nurse comes in to talk to us. Apparently, we have to see the doctor who did the surgery and that doctor was NOT in the office. Mind you, at this point, Lyra is really REALLY hungry.  So, we make a new appointment, they gave us a parking validation, and we left to give her a bottle. The good news is, she took a bottle well!

Finally, we get down to get the car to go home (we had to do valet because the parking lot was full) and the valet can’t find my car.  This is a bit more of a problem because my car is old and doesn’t have a fancy button to make it beep. They finally find my car and I am trying to set up her NG feed. While setting up the bag, two of the bottom pieces (including the piece that makes direct contact with the NG tube) fall off and land on the ground of the yucky parking garage…. Oh, did I mention we are having a heat wave in swampy DC?…..The good news is, I had an extra bag! We finally get everything set up with the NG and go to drive out of the garage. The final blow, the validation ticket we were given wasn’t working. Luckily they just let us out.

So, here is what I learned:

  • Always double check that you have an appointment with the right doctor
  • Give yourself at least an extra 30 min. when you have to drive a long ways
  • Always pack extra cloth for the baby and any other people who may be holding the baby (luckily this time she didn’t puke on either of us)
  • Pack at least 1…. probably 2…. extra NG bags
  • After all of this, go to lunch and have a nice cold sangria with your mom

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Lyra’s Second Swimming Lesson with Grandma

The Good, The Bad, and The Lucky

The Good, The Bad, and The Lucky

Tonight (or, I guess 3 am is morning) all I can think about is how lucky I am. The most immediate reason is that she is actually sleeping through her 3 am feeding! This means that I get to just do an NG feeding and I then I can go back to bed! We get one NG only feeding in a 24 hour period. Previously we were doing it for the 3 am feeding, but for the last week and a half she has been nice and awake for it. Nice and awake = bottle + NG feed. Also, by “nice and awake” I really mean “awake and fussy” or “almost beside herself”.

That is where the other part of me being lucky kicks in.

I am lucky because my mom has been here helping us, especially with the middle of the night screaming. She has also been helping us pack, prepare meals, and keeping mommy sane. I am not totally sure I would have survived the last week without her help. What makes me even more lucky is that she is able to stay for yet another week. Bless Grandma!

Oh! And my sister is here! That doesn’t really make me lucky, but I am still really excited.  I mean, I am lucky to have her as a sister (please read previous post about where we are moving to in Colorado), but her being here isn’t totally related to why I feel so lucky right now.

I guess that I will throw the “bad” in the middle of this and end on a high note. Well, the middle of the night screaming had been …… awful. Given, my mom has taken the brunt of it. We live in a 2 bedroom apartment so Lyra and Grandma have been roomies for the past few days. There hasn’t been really anywhere for her to escape to when Lyra is having a rough night. My mom has taken the 1 am – 3 am shift, and I have been taking the 3 am – whenever Lyra lets me go to bed shift. Now, my husband has been taking his fair share of it too. He has been doing the midnight feeding. From what I hear, it has been tough.

The other “bad” part is that we have had to stop giving her breastmilk. Now, I know that babies who grow up on formula turn out just fine. Hello, the person typing this blog is a formula baby. It was just really hard for me to give it up. I have spent countless hours pumping since the day she was born. At times, I felt like it was the only thing I was doing right in terms of taking care of her. Just over a week ago I was desperate to feed her and I didn’t have any milk ready. It was all way too cold and she was super hungry. I grabbed a premixed formula bottle from our first NICU stay, threw a nipple on it, and prayed she would take it. To my surprise (and slight horror), she sucked it down. Not only that, she didn’t scream. Thinking that it might have been a one time thing, I tired again for the next feeding and had similar results.

Lyra didn’t like my breastmilk.

While I was really happy that we found something she would eat and be happier about, I felt rejected in a way. I had poured my heart and soul into pumping for her. I would get up in the middle of the night, even when she was in the hospital, just to pump and make sure that I kept producing plenty of food for her. With all of that time, effort, pain, and sleep deprivation…… she liked formula better. However, once I removed my ego from it, I could focus on the good part of this.

The good part is that she is doing so much better on formula. We have settled on a type that is for lactose sensitivity (for those who knew me as a baby, this will make a lot of sense). She screams less during feedings and her throw ups have mostly turned into sprit ups. Even the spitting up has become less frequent. Feeding has become more positive and she has become more eager to take a bottle (although she still isn’t taking enough by mouth for us to stop using the NG tube). Also, she seems more satisfied. To be honest, I think I was producing something closer to skim milk than whole milk. I won’t bore you with details, but there were signs that I may not have been letting down all of the time. This meant that I wasn’t producing the really fatty milk she needed. Anyways, she is turning into a little butter ball and it makes me really happy to see.

On that note, I am going back to bed…. at 3:32 am! This is a record for the last few nights.

Dealing with the Trauma

Dealing with the Trauma

Trauma is not a word that I like to use, but in this situation I can’t think of a more appropriate one to use. Also, I am not always sure how well I “deal” with it, but I do live with it. The fact of the matter is that my husband and I are traumatized by everything that has gone on. I don’t think a day goes by where I don’t think, at least once, “Am I going to have to take her back to the hospital?” Sometimes this thought occurs because the future is so unknown. Sometimes I have it because we are having a bad day. But, the thought is always there.

There are defiantly some triggers for both my husband and I. The two that come to mind are a poor PO (from a bottle) feeding, and throwing up. When Lyra is only willing to take a small amount from the bottle it flashes me back to desperately trying to get her to take just a little more, and knowing that it wouldn’t be enough to sustain her. Now, I know that she has the NG tube now and she WILL get the nutrition/calories that she needs. That doesn’t stop me from remembering being in tears and begging my baby to “just take a little more” because I knew her tiny body was in desperate need of calories and hydration. It doesn’t stop me from remembering how helpless I felt when I would bring the much needed bottle to her mount, only to have her scream and refuse to suck from it. Most of all, it doesn’t stop me from remembering how defeated I felt when she threw up what little we had managed to get in her.

Throwing up is the other major trigger.

Now, she does still throw up. I get that all babies throw up from time to time, but when you have a failure to thrive baby with a history of feeding issues, it can induce an anxiety attack every time it happens. When she throws up now, all that I can think is:

“What did I do wrong?”          “Did I move her too much/too quickly?”          “Did I push her to take too much from the bottle?”          “Did I start the NG feed too quickly after the PO feeding?”          “Is the NG feed too fast?”          “Did she get enough?”         “Will she keep her next feeding down?”

“Will I have to take her back to the hospital”

On and on and on…….

Now, I know that not all of these thoughts are productive. Sometimes, I did nothing wrong at all. But that doesn’t stop me from thinking some (if not all) of theses when it does happen.

The other thing I struggle with is hearing her cry, especially in fear and/or pain. I know her cries for fear and pain very well at this point, and sometimes I hear them when they aren’t actually happening. Knowing that she isn’t actually crying is a big reason why I don’t like to be in a different room than she is, especially when it comes time to sleep. Even if I am taking a nap and my husband is home, holding her, I swear I will hear her cry and it will send me vaulting out of bed. Tonight was a great example of what I struggle with.

Lyra was fussy most of yesterday (plus she threw/spit up three times). For the midnight feed she did not want to calm down and was very upset through much of the NG feeding. Sometimes, if she is too upset during the NG feed, she throws up. So, my husband and I spent the 25 minutes trading off trying to calm her down without picking her up or accidentally having her gag on her pacifier. Finally, we got her to fall sound asleep at the very end. Rather than risk waking her up in the transfer to her bed in our room, we decided to leave here in the nursery with the video monitor on. Laying in bed, I could swear I heard her crying. I could hear it building into real distress. Opening my eyes, I looked at the monitor only to see her still her peacefully sleeping always. However, even with my eyes open and watching her, I swore I could still hear it. Moments like this make me feel crazy and are hard to acknowledge and talk about, but they happen. I know why the fear is there and the moments that caused me to develop such anxiety about those two types of crying, but knowing and controlling are two very differently things.

For now, we are dealing with our trauma the best that we can. For me, I have to keep reviewing the signs that tell me that she is okay. I also try to find tools, like the monitor, to help show me that she is okay. When I start to panic, or fall apart, about some of this, my husband tells me what I can’t tell myself. I do the same for him when he starts to lose it a little. Right now, we are still a team.  We try to recognize when one of us needs a break to regroup, or words about what is different (and so much better) about having her home this time. At this point, we have had her home for the longest period of time yet. As the days go by, I hope the anxiety will decrease. But for now, the best I can do is admit it is there and deal with it by using the few (but powerful) tools that I have.

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Lyra’s first 4th of July.

Pink, white and blue was the closest I could get with the cloths that fit her.