How to Survive Your Child’s Hospital Stay

How to Survive Your Child’s Hospital Stay

As many of you know, Lyra was in the hospital again for a few days last week. She had an infection and became dehydrated. Because she is a complex case, it required closer monitoring than an average child. She was home two days later and it doing great. During my stay I ran into a mom in the elevator. I have no idea why she was there. It really doesn’t matter. It’s never a good thing. She was obviously stressed, upset, and worn down. She mentioned that it was the first time her son was in the hospital and I could tell she felt overwhelmed. While I wasn’t able to say much to make that mother feel better, I figured I would pass along what I have learned.

How to Survive Your Child’s Hospital Stay:

  • Take a deep breath: Panicking will only make the situation harder/scarier for your child. I used to view hospitals as scary horrible places. Going into one nearly gave me a panic attack every time (even though it was never because I was sick). Oh how my views have changed. When my baby is hurt or sick, I now view the hospital as a safe place where we find solutions.
  • GO HOME!!!!!: This may sound CRAZY to many people, but trust me. If you are going to have a child in the hospital for any length of time, you need to take breaks and GO HOME. When Lyra was in the NICU at Children’s National, nurses used to “yell” at me all the time to go home and get some sleep. I get it now. By going home you are NOT neglecting your child. You are recharging. Since Lyra is older, Mark and I trade nights there. No one really sleeps in the hospital (Lyra included), so this allows us to always have one adult who is fully functional taking care of her. And, if you can’t have someone else stay there, let the nurse know. Night nurses will make sure to keep a special eye on your child if you can’t be there. I know that Lyra has been passed around and held when we couldn’t be there.
  • Get to know your nurses: Nurses are amazing people and your biggest ally in the hospital. They are your teammates and they care about your child. If your kid has a rough day, they take it home. Trust me, I have been told by nurses. Nurses will help you take care of your child beyond administering meds. For example, Lyra is a terrible sleeper, especially in the hospital. At night, the nurses will frequently rotate with whomever is staying with her. They will rock her and hold her and try to put her back to sleep so we can get a small amount of rest. Now, if you happen to not like your nurse, it is totally okay to request a new one. Not everyone clicks. It’s okay.
  • Ask questions: No one is going to think you are stupid for not understanding something. Sometimes the medical professionals get so wrapped up in their conversation they forget there is someone in the room who is not familiar with the terms. It is okay to remind them that you need an explanation in normal people terms. Many doctors are happy to explain and even draw pictures. While their picture of often about as legible as their signatures, it’s the effort that counts.
  • Know where the refreshments are: I am not talking about the cafes and cafeterias. Every wing that I have been in has an area with a fridge, water cooler, and coffee (at the very least). Make sure you are keeping hydrated and for the love of god eat something. I can’t tell you how many times I have heard a code go over the speaker system because a parent fainted. If you are on the floor, you can’t take care of your child.
  • Accept the help that is offered: You would be amazed who comes out of the woodwork. Don’t be too proud to accept food, a change of cloths, or the offer to take your dog until your child is home. I am still humbled by the outpouring of support.
  • Ask for help: If you need something, ask for it. I have had to ask for food in ERs, asked friends for help with my dog, and a number of other things. People often don’t know what to do or how they can help. You would be surprised at how willing they are to give support.
  • Speak up: If you think something isn’t right, say something. While they may be the medical professionals, you are the specialist in your child. Especially if they are non verbal, you know when your child is in pain or just not doing well.  You know how they normally act and how they communicate things. It’s okay to be “that parent”.

I am sure many of the other parents who read my blog have their own words of advice. Please feel free to add them in the comments section. While I hope no one ever has to have their child in the hospital for any length of time, know that it happens and you can survive it.

Sitting Vigil

Sitting Vigil

As I sit and watch my baby sleep I take comfort in her soft rhythmic breathing

I tell myself that I am sitting here because it is her first Colorado thunderstorm

What if she is scared of the sudden flash of light, or is startled by the shaking BOOM of thunder?

But to be honest, I am here to calm my own anxiety, not hers

Hearing her breath so calmly slows my own racing heart

Everytime she makes a little sound in her sleep, I hold my breath…hoping that I have not woken her from her slumber

Sometimes, even my husband joins me. We sit, each doing our own thing

Taking comfort in her peace

I know that I will not be able to do this forever

It will be creepy if I do this when she is 16

Even though she will still be my baby

But for now she is a baby, and I will sit and keep vigil

And pretend it is to comfort her

IMG_0648

Lyra and her cousin, Sofia, having some Halloween fun

Two Years Ago…

Two Years Ago…

Two years ago today I married Mark. It seems like every year our lives take a drastic turn and when our anniversary comes around we are in a totally different place than we were a year before. The day of our wedding we were living in a beautiful one bedroom apartment above a metro station in the DC area.  I had just been offered a new job a few days before and our lives were moving so quickly.

Fast forward a year.

At our one year anniversary I was so sick because…. I was PREGNANT! Very few people knew at this time and I was a bit of a hermit. It’s hard to be social when you are hugging the porcelain altar. Things were progressing at the job I had been offered a year before, and I was feeling like I was getting into the groove of things there. In anticipation of a possible pregnancy, Mark and I had moved into a two bedroom place slightly closer to where I worked, but we were still in Maryland. Oh, and we were both gearing to enter into a new decade (our 30’s!).

And this year….

This year our little one is with us and our lives look drastically different. For one, we no longer live in the DC area. Colorado and my family have welcomed us with open arms. I am a full time mom, medical coordination, and feeding nazi for Lyra. While our lives have been in a bit of turmoil with Lyra’s complications, we have stood together as a team. Sure, we argue and things have been quite stressful at times. But, at the end of the day, we know that we have each others backs. In the end, we always work together. I am so grateful to have him as a partner down this bumpy road. Life is a journey full of twists and turns. Sometimes we drive it, and sometimes it drives us. At least I know I have a partner to face those challenges with. When I have a bad day, he is there is help keep me moving. When he has a bad day, I try to do the same. I am so lucky to have him by my side.

 IMG_0644

Family photo

Home Sweet Colorado

Home Sweet Colorado

Sorry it has been so long since my last update, but we moved across the country and life was a little crazy. While we will dearly miss our friends in the DC metro area, it really is the best move for Lyra and our family. We made it here safe and sound. It was a bit of an adventure with a few miss steps along the way.  However, “Team Lyra” has a assembled and everyone is here safely.  Now, I would like to give a special shout out to Team Lyra and discus the line-up (my husband and I have excluded from the list since everyone knows we are on the team):

  • G-Ma: She runs a tight ship and I could not have done this move without her. Not only did she fly out to Maryland multiple times to help us take care of Lyra, she also did a ton of packing, cooking, cleaning, etc. She was my partner on the flight to Colorado. Also, she gave up her “Casita” for 6 weeks. Um, G-Ma of the year? decade? century?
  • G-Pa: My dad also flew out a number of times to help us with Lyra and has been a wonderful sounding board for all things medical. He has a great way of taking some of the very clinical terminology and making it understandable to the rest of us. He may have just had his knee replaces, but he is still a champion Lyra holder! He will be up and running full speed in no time……. (Dad, that does not mean you are allowed to actually run anytime soon!)
  • Uncle Kyle: Oh boy, does Lyra love her Uncle Kyle. She lights up with him! He also took the time to drive my car from Maryland to Colorado for me, so that I could fly Lyra here. Such an amazing big brother. Lyra looks forward to her swimming lessons with him.
  • Aunt Kristi and Uncle Jason: These two live crazy busy lives. Both have high powered jobs with long hours, they have four kids, and they STILL let us move into their house for 6 weeks. Not to mention they helped us find a house to rent and some great furniture we will need. Kristi even went with me to urgent care late at night and spent 2 hours slowly giving Lyra fluids while I caught up on some sleep (Lyra was okay, she just had a little stomach virus). Oh, and they obviously love my daughter and are happy to help hold her, even when she is being a little fussy.
  • Nico: He is a 15 year old boy who is totally interested in his infant cousin. Um, where did he come from? He is great playing with her and his so interested to learn about what is going on with her. I am sure he will teach her all sorts of bad habits down the road.  Isn’t that what big cousins are for?
  • Sofia: Three words, “Mommy’s little helper”. Sofia has helped me a ton since we have been here. She is amazing with Lyra and Lyra basically thinks Sofia is amazing. Some days, Sofia is the only one who can get Lyra to fall asleep for a nap.
  • Sarah and Emma: While Sarah and Emma may seem a little young, they do something that is amazing for my little girl. They play with her. They make faces, call her name, and spend time on the floor with her. The girls may look at it as just silly play time, but mommy sees it as cognitive development. Love these little girls.

While there are many qualities that I have left out for each of these individuals (I could write a book about some of them). You get the idea. Lyra is surrounded with a tremendous amount of support here (and so are Mark and I). All of our lives will be richer and better just having them so close….. A picture of the team will be posted soon.

IMG_0526

Cousins

IMG_0525

Urgent Care Trip! Welcome to Colorado!

IMG_0528

New Toy!

FullSizeRender

Not amused Mom!!!

General Update

General Update

Today’s posting doesn’t have much of a theme beyond giving a short update on little Ms. Lyra. Last week we saw cardiology, ENT, OT and the nurse stopped by. Cardiology just did an EKG this time and the results were good. It was funny watching her get hooked up. There were 14ish sensors on her little body (see picture below), and she smiled the whole time. She won’t need to go back until she is 6-9 months old. ENT said that she looks and sounds great (they are the ones who performed her surgery). She doesn’t need to be followed up by ENT at all, unless something new develops. GO LYRA! Also, we were weighed again at the end of the week…… 10 lbs. 13 oz!!!!!!!!!! It is a huge milestone for our little one. She gained 14 oz in about a week. Last week was a very good week for Ms. Thing.

IMG_0456

The Road Goes Ever On and On

The Road Goes Ever On and On

The Road goes ever on and on
Down from the door where it began.
Now far ahead the Road has gone,
And I must follow, if I can,
Pursuing it with eager feet,
Until it joins some larger way
Where many paths and errands meet.
And whither then? I cannot say.

-J. R. R. Tolkien

My husband and I have started this new adventure and our road has started taking many twists and turns. With that, I am a strong believer that it takes a village to raise a child. That village will look different for every family. For some it will be a network of blood relatives, for others it will be a network of friends. In the end, all of it is family. While my husband and I have developed a wonderful network of friends here on the East Coast, we have decided that our village needs to have more family involvement. Thus, we are moving back west to live near my family. How we are living out here is just not sustainable and, in the long run, we really need their help.

So how close are we moving to them? Well, we are moving into “the Compound” to start with. Now, I call it the Compound as a joke. Plus, calling it “the Commune” sounded too much like a cult. The house started as my mother’s home she built about twelve years ago. A few years back, my sister moved in with her kids during her divorce. It was a place both she and the kids felt safe and welcome. Plus, who doesn’t love Grandma? The house has since expanded to include a carriage house (the Casita) which is now my mom’s sanctuary. The big house is now occupied by sister + her two kids (ages 11 and 14), and her husband + his two kids (ages 6 and 3). For the first month or so, my little family will be joining them. My mom is moving back into the big house and my little unit will be living in the Casita. So, this property will now sound like a weird version of the Twelve Days of Christmas:

5 Adults

4 kids

3 dogs

In 2 “houses”

With one very special little Lyra

…….I am still working on 6-12. Suggestions?

After a few weeks, we are moving into a rental around the corner, but we have to wait for it to open up. I am actually looking forward to having all of the help right there when we first get to Colorado. Now, when we are so tiered we can’t finish a single task, someone is right there to help us. And the help does not stop there. My brother and my dad live just fifteen minutes away and are over at the house all of the time. Although my parents are divorced, there are now good friends. It’s very weird, but in a wonderful way. On top of having wonderful and incredibly supportive family in Colorado, we are going to be near yet another AMAZING Children’s Hospital. So, we will have comparable care for a little one.

IMG_0349

At 2 months, Lyra has already figured out that Mommy and Daddy are weird

Now, getting everyone there is our next adventure, and one that I will have to write about in another posting. For now, it is 4 am, Lyra’s NG feeding is done, and it is time for Mommy to go back to bed.