I try not to write posts out of anger or frustration, but this one has been brewing in my brain for at least a week now. Recently a mom in one of my support groups posted a conversation between herself and a “friend”.  In the conversation her friend said, “I am afraid to get pregnant because I am afraid of having a child like yours.”

Let that sink in.

A child likes yours.

A child like mine.

A child like Lyra…

I have discovered that many people can’t see beyond the medical complications. Don’t get me wrong, I have been caught up in them myself, but they are NOT who my child IS. For some people, all they see if this:

 

To be honest, while no one has actually said anything like this to me directly, I see it in their actions. People fear telling me they are pregnant. Why wouldn’t I be happy for them? If they are happy about it, it’s a great thing to celebrate. Life should always be celebrated. I have seen people visibly flinch or cringe when seeing her feeding tube. It doesn’t look any worse than most piercings. And I have seen strangers look at this happy little girl with sadness in their eyes because she eats differently.

Beyond all of that, by defining my child by her medical conditions they are missing out on this:

and this

and this

and this

In the end. I hope everyone has a child like mine. A child like Lyra. Because Lyra is joyful and lights up a room like no kid I have ever seen. When she sees someone she loves, you know it because she shows it with her whole body. She is loving and happy and I wouldn’t trade her for the world.

So, while I would never wish the trials Lyra has had upon any other family, I do hope that you have a

                     Child

                                 Like

                                           Mine

So, some people may say we are late to the game in terms of sleep training, but Lyra does everything at her own speed. Plus, we haven’t been able to let her get too upset or she throws up the precious calories we are trying to keep in her. Right now she is at hour three of putting herself back to sleep. At least tonight it started at 8:30 pm instead of 2 am (when she normally does this). Of course, as I write this she falls asleep.  Anyways, I am up so I should finish!

This is how a typical night of “sleep training” goes in our household.

1. It NEVER happens on a Friday or Saturday night. This means I am the one who is up with her. It is not that the hubs isn’t willing to get up, it’s that he works all day and we need him to be functioning. I have kicked his butt back to bed more than once…. unless Lyra pukes.  Then I he helps me remake the bed before I send him packing.
2. Sometime between 12 am and 2 am we hear a little fuss come out of the monitor. We turn on the camera to see if she moving around, hoping that it is just a little blip and she goes back to sleep.
3. Slowly, she starts moving. Do we leave the wonderfulness that is the bed to pat her back in the hopes she goes back to sleep? Or do we let her fuss a little longer and hope she doesn’t fully wake up? ….. Normally we decide to pat her back. At this stage she is still our adorable, lovable ray of joy.
4. We reach into the crib making little shushing noises and pat her back – I should mention, Lyra sleeps on her side due in no small part to her history of vomiting in her sleep – Anyways, she fusses a little more, rolls on her back and then does the one thing we know means trouble……
5. She opens her eyes, looks right at us, and starts blowing bubbles.
6. She is no longer cute.
7. I walk out of the room. Normally I am saying a few choice 4 letter words under my breath.
8. Then comes the extra melatonin (the suspect she doesn’t produce very much), sometimes Tylenol (maybe she has a headache), and the waiting for her to STOP PLAYING!!!
9. That’s the thing, she isn’t even upset. There is no “letting her fuss it out” because there is no fussing. I think  fussing would piss me off less.
10. At this point I am on the couch with the video monitor (remember the whole “hubs needs to sleep” thing?). I have to check on her regularly because she is hooked up to her overnight feed and there is a serious concern about her disconnecting it or pulling out her tube. I watch practice the “pike” position – feet behind the head – and listen to her blow bubbles and raspberries….. it’s really cute at 3 pm.  At 3 am… not so cute.
11. Sometimes she is producing so much spit and having so much fun she gags herself and pukes all over her bed. This is when the hubs comes in! After I change her and he changes the bed, he is sent back to sleep… I don’t think he actually sleeps much though.
12. By this point it is normally around 3 am and I am not the most patient person in the world.  In fact, patience has gone on vacation to the beach because she was about to lose it. I lay down on the couch thinking about how I will word the ad on ebay in the morning. At some point I drift off to sleep.
13. Later on I wake with a start and realize there is no more sound coming from Lyra’s room. Sometimes I drag myself off the couch and return to bed, sometimes I don’t. All I know is, I always wake up to the smell of fresh coffee – that would be the hubs doing.

While it seems like the never ending night when it is happening, I eventually see this face and notice that it is cute again:

 

I decide not to post anything on ebay (family joke), and we go about our day – although I do desperately try to find a time to nap.

Everyone tells us that we are doing everything correctly, and that it will get better. Until then, coffee is my best friend and I am trying to remember all of those darn breathing exercises from yoga.

 

For those of you who were following my blog at this time last year, you will know that we missed this trip because Lyra was in the hospital having surgery. Even this year I wasn’t so sure we would make it because Lyra and I both have colds. However, she is able to keep enough fluids down, so we made it! I am beyond excited to be here with my family.

While I am ecstatic to be here, there is something that I have noticed recently and is the real thing I wanted to share with everyone. 

Lyra is just a baby.

Something I struggle with (and I am sure other special needs parents find the same thing) is striking a balance between wanting the world to accommodate your child’s needs, and wanting the world to just treat your child like any child. At this stage in the game I don’t have much to complain about in terms of accommodations for Lyra. She basically needs what any baby needs with a few modifications. However, I do get anxious about how others perceive her and I do have to be extra vigilant about who/what she is exposed to (germ wise). 

While Lyra is medically fragile, she is no porcelain doll.

This kid is tough as nails. She can bonk her head and not even flinch. There have been times where her whole body looks like it was used as a pin cushion and she is bouncing around in her walker flirting with everyone. 

It is hard for me at times. She rarely plays with other babies because it is too risky at times to expose her to them. She is also behind developmentally so sometimes it is hard for her to keep up. It’s difficult for me to see the differences between her and typical children. Also, I am always concerned about her attachments. They mark her right away as being different.

There have been a few key moments in the last month or so that have shown me that, it isn’t that people don’t notice her tube, it’s that they don’t care. To them, she is just a baby. It warms my heart to see her treated that way. 

The first moment was when a good friend of ours came to visit from Maryland. S has been around a ton of babies and just loves kids. While I knew S’ heart was in the right place, I was a little worried about his reaction to the realities of taking care of Lyra.

I needed to have more faith in people.

S ment Lyra right where she was. He didn’t expect her to be doing certain things, or get weirded out by her being connected to a machine. He took note of her tube, where it was, and then just Lyra how she is. He played with her and carried her just like you would any other kiddo. He also watched me give meds, prep bags, and attach/detach her extension. With some written instructions I probably could have left her with him for a few hours. Uncle S would have been just fine.

The second moment was with my nephew. It was a simple, quick thing. We walked together over to our relative’s house for dinner. Once we got there, he picked up my daughter, threw on her backpack, and walked off as if that is what you did with every baby. Mind you, my nephew is 15. Lyra loves him and just sat on his lap for about 45 min while they took silly pictures on snap chat. 

While it isn’t a moment, the process of getting here, to Hawaii, was more of the same. People look at her as a cute, fun, good baby… With an attachment. I have learned it is NOT that people don’t see her feeding tube. They see it, and even ask about it. People don’t focus on it. It’s a footnote for them: important for complete understanding, but not worth having in the main text. 

With that in mind, it is time for us to enjoy some more sunshine.

Lyra turned 1 year old 4 days ago. I wanted to write some inspired post about the bad, the ugly, but most importantly, the good. Unfortunately I wasn’t feeling very inspired. Things were stressful and Lyra wasn’t doing so hot. To put it bluntly, she needed to poop and couldn’t. We ended up taking her to the local branch of our children’s hospital thinking it would a quick fix…. But things never go as planned with Lyra. After a night in the emergency department we ended up inpatient at the main hospital… 

The day after her birthday. 

At this point I wanted to write something witty about basically spending her birthday in the hospital, but she nose dived and I didn’t have “witty” in me. By the third morning I was mostly just feeling desperate as Lyra was not getting better. At this stage they were talking about placing an NJ tube to try to get meds to stay in her and attack the problem from the top and bottom. She was in pain and miserable and I was one sad mama.

Then, as quickly as she went down hill, she bounced back! All of the sudden she wanted sips of water. We tried putting pedialyte through G tube, negating the need for the NJ (yay!!!). She started playing, chatting, and pooping without vomitting!!! Yesterday she played all day and had no interest in napping.

So, we celebrated her birthday. Was it idea to do it in the hospital cafeteria? No. But my family has a different perspective on “ideal” when it comes to Lyra. “Ideal” for us is that she is happy and here. And really, that is what we were celebrating. 

My mom cooked a great dinner, the fam loaded up a few cars (there were 9 people) and made the trek down to Children’s. My husband’s parents were in town too, making the total number around the table 14. Lyra wore her birthday dress, hat and bib (even though she really couldn’t eat), and we all just celebrated her being here with us. She even had a little taste of frosting. 

So here’s to my little fighter who is always keeping things interesting 

When Mommy can’t make it better, she cries

You might not see it, but she does

Sometimes there is nothing she can do

She can’t change your DNA or how you grew in her belly

She can’t get the IV for you

She spends hours agonizing how to feed you…. but you can’t keep it down

And it breaks Mommy’s heart that she can’t make it better

Mommy can’t sit under the scary machine

Mommy can’t go under the surgeon’s knife

Mommy can’t fix your brain, heart, kidneys, liver, or eyes

Mommy can’t eat for you

Mommy can’t help your body move the way you want it to

Mommy can’t make it better… and when Mommy can’t make it better she cries…

And then Mommy gets up

Mommy can’t make it better, but she can hold your tiny hand while they place the IV

Mommy can keep trying differnt ways to feed you

Mommy can sing to you under the scary machine

Mommy can hold you when you hurt and rock you when you cry

She can fight for you

Mommy can find ways to help you move

When Mommy can’t make it better…

It’s hard for Mommy…

But Mommy will always be there

You will never do this alone… and neither will Mommy

 

So, we are still in the hospital. Lyra is doing much better and they started her on fluids through her g-tube.  She isn’t getting 100% formula yet, but she isn’t puking! We will likely be here a few more nights. In the spirit of having to live here a little longer, I thought that I would share some additional rules for surviving a hospital stay.

1. Invest is a good blow up mattress- I cannot say enough about this. My mom bought be a Serta Raised Air Mattress with Never Flat Pump. It is life changing. No longer am I waking up Lyra in the middle of the night because I have to re-fill the mattress.  Plus, it is SO much better than sleeping on the bench or in the sleeping chair. I can’t say enough about how this has changed the quality of what little sleep I get.
2. Bring a pillow from home – Hospital pillows SUCK!!! A million people have used them and they are little better than a folded up thin blanket. Plus, they are covered in plastic, so they make a ton of noise when you move. I am a fidgety sleeper, so this is a problem.
3. You can make (reasonable) requests – this is better done with examples.
   1. Signs on the door – Lyra is a notoriously light sleeper. This is a problem when you have people coming in and out of your room all of the time. Now, I can’t stop the people coming in, but I can stop HOW they come in. Lyra has a note we put out that says “Baby sleeping. Please enter quietly.” Nap time has improved dramatically. I have also had to add, “Please whisper inside the room. Lyra is a very light sleeper.” This was added because her night nurse keeps waking her up.
   2. Modifying rounds – You can’t stop nurses from checking on your child and doing vitals every 4 hours. However, you can modify the timing and exactly what vitals are taken (so long as your child has been stable). For example, they normally start to round at 8pm. However, that is around the same time I get Lyra down. I often ask if they can do her last (they get to her around 9-9:30pm). This means she is more deeply asleep and less likely to wake up. Also, sometimes I ask if they can skip her blood pressure for the 8pm round. Since Lyra has had a stable blood pressure, it is never an issue. This can also be useful for naptime. If your child is taking a nap, often times they can wait an hour or so to do a vitals check.
   3. Getting a new nurse – If you don’t feel like the nurse is listening to you, or if the nurse isn’t meeting your child’s needs, you can request a new nurse. Just make sure your demands are within reason. They can’t be with your child 100% of the time and sometimes it takes them a little time to get what you need. However, if you ask for more formula and it’s been an hour, that is not okay.
4. Have a drink… and I don’t mean water – When my family brings us dinner, it often includes beer or wine. Should we technically have it in the hospital, probably not. But, we aren’t getting drunk and one drink just takes the edge of the nerves a bit. It’s okay. No one will judge you.** Now, I may have taken this a step further the other day. On Sunday I stopped by my sister’s house to soak in her giant bath tub. My neck and shoulders were killing me and I only have a dinky tub at my place. The best part about Spa Short is that the bath also came with a rum and diet coke…. at 10:30 AM. Don’t worry, it wasn’t strong and I only had one. However, I felt SOOOOOOOO much better afterwards.
5. LEAVE THE ROOM – To be honest, I am horrible about this one and my poor husband pays for it. I end up in a really bad mood and totally falling apart sometimes. Seriously though, leave the baby with a family member or a nurse (the nurses LOVE a chance to hold/play with the babies), and take a walk. Sit outside or by a large window. Drink a cup of coffee/tee (I think they might frown upon a beer in the hallway). Make a phone call to a friend and talk about anything other than why you are in the hospital. Watch a short show on Netflix. Just LEAVE the room!

Those are the big tips I can think of right now. At the moment Lyra is asleep and I should follow her example.

 

** Okay, there was 1 time that I judged about drinking at the hospital. I was waiting for a regular appointment with one of Lyra’s doctors. A couple with two kids came into the waiting area and sat near by. I heard the mom say to her boyfriend, “Are you thirsty? I have some water.” He replied with, “Naw, I’m good.  I just finished that Smirnoff.”…… Classy!

Tonight is the 14th night. I have mixed emotions and I am also emotionally drained. I am not sure how that works, but there it is.

So, how is Lyra doing? She is doing okay. We have gotten her to a point where she can tolerate enough formula to stay hydrated (yay!). However, the calorie count remains elusive. We are making progress though. She is now on a formula mix that gives her 23 calories/oz. We need to get her up to 24 calories/oz. That little tiny change may not seem like much, but for Lyra it seems like the difference between drinking skim milk or heavy cream. The process of building her up is agonizingly slow. In the past they have let us go home to build things up on our own, but they don’t want to do that this time. This time they feel like she needs to prove herself. To be honest, we don’t want to take her home unless she really can tolerate things.

I am hopeful we will be home by Wednesday, but there are no guarantees.

There are many things I miss being in the hospital. Tonight I missed celebrating my niece’s birthday. I miss sleeping in a bed that I don’t have to refill every few hours. I miss sharing a bed with my husband. I miss my dog. I miss playing on the floor with Lyra. I miss cooking dinner. I MISS BATHS!!! I miss going to walks and just doing normal daily stuff.

But I have found joy in some things that have happened while we have been here.

Lyra has started to babble. This is a major milestone for her and yesterday she said MAMA. Well, it was more like, “mamamamamamamama,” and she kind of sounded like a robotic frog when I recorded it… but she said it! The babbling is really fun and cute. I get that she is late doing it, but I don’t care. Also, Lyra celebrated her first Easter. While some might think it is sad that she celebrated it in the hospital, it was really a super nice day. My family came out to the hospital and brought a great dinner. We got to celebrate it together and Lyra got to wear a cute dress. She didn’t even puke on it!

It was a very special and happy holiday, and I am grateful to have such a wonderful family.

So, things aren’t perfect. We may, or may not, go home on Wednesday. But right now Lyra is sleeping, and I should follow suit. Tomorrow will be another day of emotional ups and downs and need all of the rest I can get.

Easter Dinner wore her out