Sleep, my angel

Well that six months went by fast! All of a sudden we were back at Boston Children’s Hospital and getting our second sleep study done… where did the time go? We were supposed to be in on Friday night and out Saturday morning, but there were 6 phone calls and multiple times and dates that moved us to Saturday at 7:30pm to Sunday at 6:30am.

I was a bit more prepared for what would happen than I was last time. Read THIS if you’re wondering how it went the first time around! Well, more prepared for Addie and less so for me. I had not had dinner when we pulled out of the driveway, and I could already tell I wouldn’t last the night without food. When we got to our room at the hospital (after a seamless drive to Boston: weekend sleep study perk!), our AMAZING nurse, Kate, asked us what she could get for us. As I waved my hand and said, “Oh nothing,” she continued, “I can make you some soup if you didn’t eat yet…” My eyes lit up. She made me soup! And English muffins with butter and jam. And ginger ale.

After I gorged myself on low sodium (NOT recommended) soup and bread, it was onto wrapping up my little girl into a hooked-up mummy. The nurse we had was wonderful and told me I could hold Addie and feed her while she was getting hooked up to the sensors. If you’ve never had a sleep study before, the head is measured numerous times and marked with red. Then sensors are placed on those spots with a type of glue. Then the head is wrapped so the sensors stay in place and all the wires stemming from them are plugged into one machine that reads them all night. Then, there is a mic “glued” onto the chest, right under the chin (to record snores) and tapped there for security. There are sensors placed on the legs, ribs, chest and toe- and all the leads are pulled though the top and plugged into the same sensor box as the head leads. Over-top the pajamas goes two belts that also get plugged in and up to the box. There is a nasal cannula put in place, as well. We were SUPER lucky that our nurse was so awesome- she waited until Addie was asleep and she had gotten good information before placing it in. Addie barely woke while she did, and easily fell back to sleep without comforting. Previously, two nurses got Addie into all this gear and she was hysterical. This time around it was much more laid back and pleasant.

Barely any tears! Just an ounce of complaint, and she was fine!

After she was in her gear, we did our usual routine then off to sleep! We began with tooth brushing (she doesn’t spit yet) and then we read our usual night night book. We said our prayers and curled up with snuggle puppy. It took a bit of loving and about two minutes of cuddles and she was off to sleep. She woke up a few times during the night, but she didn’t need much help to get back to sleep- just a back pat or hand to hold or replacement of a lost bink. She was able to sleep on her belly for a while (which is how she prefers to be), and then the nurse gently rolled her to her back, where she stayed until the next morning!

Sleeping baby ❤ Snuggle Puppy

I was SO happy that I had my tablet with me- I was able to link up to the WiFi and watch (really bad) movies on Netflix. With my headphones on, I snuggled into a really restless sleep. I know I will never get any sleep myself during a study, but it’s always hard to actually go through- constant door openings, trying to not wake the baby while getting ready for bed, having to pee and not wanting to flush because of the noise, that midnight snack you can’t have because you didn’t bring, pumping without showing anything just in case you’re too close to the camera or someone comes in… it’s a hard night for the parent, too!

In truth, the sleep study is hard enough, but add to the mess the hair the next day, and you’ve got a real mess on your hands. My tips HERE are from last study, but this time, our nurse (AWESOME NURSE!) took her time and helped me wash Addie’s hair until it was almost perfectly clean- at least all the glue and red pen were out!

Before… After

As a bonus, the nurse gave us some goodies to go home with… including a spray that would help take the residual stickiness out, wipes for the tape and glue left on Addie’s skin, and 2 packets of Aveeno Oatmeal Bath to soothe after the wipes. I could not have asked for a better experience than this one if you have to have a sleep study done.

Our take-home care package!

Because Addie’s hair was wet and the hat she came to the hospital wearing was a hand-knit owl, our (once again AMAZING) nurse gave us a really cute princess one- and it was big enough to fit Addie’s head 🙂

We were finally ready to go, and Addie decided we needed a pic of just us ladies

Silly, but true, dirty hair is ALWAYS easier to put up than clean hair- this is true even for babies. After she got home, we took a nap and got into clean clothes- then it was time to experiment! Because her hair had been washed so much, I figured I would wait a day to try and clean it again and made Addie’s first pigtails instead!

If I could give you ONE piece of information and that’s all you take away from this: bring as much of your routine with you as possible. Addie was uncomfortable and annoyed, but with everything as similar to at home as possible, she acclimated very well to what had to be different due to our circumstances. For us that meant mamas milk, tooth brushing, reading Goodnight Moon, saying our prayers and getting Snuggle Puppy.

Our usual suspects

Ready for breakfast when we got home from Boston!

And that’s how you do a sleep study!

We are hoping for less sleep apnea occurrences, both central and obstructive, but when she had her tubes put in (ears), she showed signs when she was under. Not a good sign. While apnea is common among children and adults with achondroplasia, I am hoping that she will grow out of it before it gets worse. We head out to Waltham to see the doc in a few weeks for the results. I’ll keep you posted! Thanks for taking this journey with us!

Goodnight Sweetheart, Goodnight

Prompt #7: Walk us through your bedtime routine as a kid. As a teen. Anything you still do now? Mom before Mom series

By that title alone, I hope there is an “oldie but goodie” playing in your head. I loved to be sung to as a child. I danced with my step-dad to “Lullaby” by Billy Joel at my wedding… it was magic, in his arms, wishing my Dad was still alive, but having a man who cares so much for me holding me there on the empty dance floor.

I cried the whole song. Al just held me up like I was his baby girl crying in the middle of the night.

That dance brought me back to childhood- of times when I stood on my Dad’s feet in the living room in my footie pajamas extending those “five more minutes” for ten. I never had a true routine that I can remember as a youth, and if I dare devulge too much about college, I would have to admit I fell asleep standing up against my bed more than once, and even in a pile of “I thought he loved me tears” at least twice.

What I remember most about my youth is: “I can’t sleep”. As I stood at the top of our stairs, my parents peered past the threshold between the front hall and kitchen. There I was, pretending I had been asleep for a half hour and now was unable to remain in bed. “Do you need a cup of tea?” my Dad would ask. “Yes.”

Mom would bring me tea and rub my head, my back, my arms, hands, legs and feet repeating “relax”. I do this for Addie now. It works like a charm to get her to calm. Many nights my Dad would come in a sleep with me until I really was in dream land and not pretending. Other times I set my TV timer for 15 minutes, and inevitably, it became just like my alarm, but in reverse. I kept tacking on 5 minutes until I finally fell asleep holding the remote, or sat petrified because I had just watched a mini-marathon of Unsolved Mysteries. I would only hide when I heard my parents at the door to my bedroom. I quickly hit the power button and closed my eyes. It never worked. They knew I was awake.

As a teen, my routine was to shower after work- being a dishwasher is kind of gross- finish homework and go to sleep. I was an athlete, so I never had the opportunity to sleep in and miss morning classes (not in by 9am means no practice that day and no game that week), so I tried to get in at least 6 hours. Even in high school, when my Mom got home late from seeing her last session (she’s a family therapist), I would ask her to make me tea.

The funny thing is, 68% of the time, I never drank the tea. It was a way to lure someone to stay awake with me and talk a little longer.

As a mom, my routine is milk, pajamas, diaper, 3 books, Twinkle Twinkle Little Star, prayers and bed for Addie, followed by a glass of wine and pumping for me. Dave usually gets sleepy around this time, and I always ask for tea. As usual, it’s a ploy to not be awake and alone. To have someone to talk to as I wind down for the night.

A routine? Perhaps not. But I assure you, if I ask you for tea at 10pm, what I mean is “I care about you and want to spend another few minutes with you today.”

Travel-Wise

I want to write all about Addie’s trip to Delaware, but I find my head spitting out thoughts faster than my fingers can type. I tried to record my thoughts, but they got jumbled and out of place. And so, I’ve decided to write about it in pieces. In this segment I want to write about traveling. There are a ton of blogs out there about the usual things, but traveling with a baby on a train isn’t like a plane. And traveling with a baby who cannot be worn, on a train, is hard. Here are a few things sometimes, we just don’t think about.

We took a lot of stuff with us… and I’m glad we did. Previously I had traveled with Addie alone to Philadelphia, but she was 7 weeks and I was using the Bjorn. On this trip, we knew that we could not use the carrier because children with achondroplasia are not supposed to be in carriers, but there was also luggage for 2 adults and a growing, curious baby.

Traveling by train was a wonderful experience for me growing up, and I learned a lot being able to travel alone, see the sights and use public transportation, so introducing Addie to the train seemed natural to me. Dave has not had much train, or travel, experience, but we gave it a whirl!

Boarding a train that is heading toward New York from Boston is hard. Boston tends to leave little room for Providence to sit, and so we were separated by the aisle, both sitting in the end seat beside 2 women. Dave’s seat partner was reading an Alex Cross novel (some of my favorites) and mine was reading Nicholas Sparks. We felt it best not to bother our independent travelers, but wanted to keep Addie on her normal routine, so we bumped elbows a few times with our partners getting ourselves situated into eating formation. Yes formation:

That’s tip #1: STAY ON SCHEDULE!
I think that following Addie’s daily routine was what saved us from any battles. She wasn’t cranky or hungry or tired, because we caught those things before they came. Including naps, which were taken across my legs:

We were lucky to have taken the train during the week on the way down to Delaware, because after New York, the train cleared drastically and we were able to spread out a bit. It’s all about timing with travel- especially if you need the extra space. Taking the train may seem longer, but without the time needed for boarding and security and getting to your terminal (not to mention the extreme monetary savings, in most cases), knowing that I can spread my wings is one of the reasons I love this mode of transportation!

This was Addie’s nest on the way back; we got the 4 seats where two face another two, offering no leg room. Perfect for families, but most people don’t want them in case more people need them (you end up sitting on people with a lot of leg touching). We lucked out on our Saturday morning journey home:

Tip #2: Travel during slow times, if at all possible.
Knowing that we could stick to Addie’s schedule and travel at lower cost AND during low travel times (mid-week early day and EARLY Saturday) made the space we needed possible. There was more room for us… we need lots of space!

Tip #3: Use your surroundings.
Addie is a curious baby, and gets bored of things. I think that means she’s brilliant… it also means she can be hard to amuse for 6 hours in one train car. Using our arsenal of toys AND the outside was a perfect mix of making train-travel work for us.

Tip: #4 Get some sleep yourself, too!
It’s not like I could have been doing something else… so I took advantage of some shuteye with my baby girl!

Tip #5: Enjoy some good eats together.
We made sure to pack a small lunch bag with sandwiches and apples so we didn’t have to spend a fortune on train food. Bringing a few different foods and our own beverages meant that we could have what we wanted, when we wanted.

Benefit of trains: if you want food, you don’t have to wait for the cart AND it’s not nearly as expensive as an airplane.

Tip #6: Please, smile and laugh.
Nothing will be perfect, and your baby will make noise, bother some people and downright annoy others. Addie spent about 10 minutes spitting while another child in the seat ahead of us was making noises, too. In all honesty, I’m sure it drove a few people nuts, but to the parents that were near us, it was adorable. And it made Addie’s teeth feel better. Crying or raspberries? I knew you’d choose wisely:

If I could have worn Addie, life may have been easier, but remember (Tip #7) achon moms and dads, pack wisely! I had everything on hand in the diaper bag and none of the non-essentials. Boogie Wipes? Her nose wasn’t running, we didn’t need them and the package is bulky. Things like a large changing pad are unnecessary because they are big and non-useable on the train. An extra outfit for the babe, and FOR YOU(!) are a must-have, as well as diapers, wipes, and bags for your trash and diapers so you can collect your own mess. Bring an extra bag for toys and blankets. And when you pack your luggage, do it organized! My pump was close to the top opening on the suitcase, packed with the battery pack for no-outlet pumping (if the train is stopped, for whatever reason, they turn off the electricity), a hooter-hider, Medela Wipes (for waterless washing) and we had ice packs for storing milk. On a train you don’t know if you will be stopped waiting for another train, just like at an airport you may have a delay. Be prepared- for your comfort and for baby. Packing is key.

Tip #8… bring a friend. Or enlist a stranger.
When I travel alone, I find the most in-shape man in a suit. Not because business men are more trustworthy than anyone else, but because I can run really fast and a man in $200 Italian shoes, fitted wool pants and a two-button jacket cannot. They can however, lift your 50 pound (52 pounds, probably) bag onto the train for you and  up into overhead storage. Sometimes finding a red cap is hard, but a business man on a train? They’re a dime a dozen.

Tip #9 Practice.
How will the car seat come with you? Most babies, after a few months, are harder to carry in the seat than without. It’s oddly shaped and you can’t see over it. Try attaching it to your bag (sans baby, clearly). Does it work? Will it still stand upright? Do your wheels work, and all zippers close and do you have something on your luggage to show it’s yours (a bright orange ribbon, perhaps?) Attach your business card to all luggage, that way if someone is looking for you, and they contact your work, most likely work will know how to find you.

Tip #10 Don’t make your coffee before you go.
“Is the coffee pot off?”
“Turn around.”
We try to eat everything in the fridge that will go bad, surviving on pasta and cereal the day before a trip and chugging the milk for dessert the night before. Knowing that the trash is out, all appliances are off, and that we have no mess to clean is very important.
Have you ever made coffee before a week-long trip and come home to moldy grounds in the filter and dirty spoons stuck to the counter? I have.
Bring your travel mug with you to a coffee shop and fill up there. Then you have your mug- perfect for bringing coffee with you if you do end up making your own on your trip AND you don’t have to come home to any surprises… or the need to run vinegar through your coffee maker a dozen times then flush with hot water a few more times.

Tip #11 (Yes, 11 tips. I like to turn it up, all the way to 11) Make a list.
Put a list on top of your luggage on a large piece of paper. In red ink you should have written what should be in the car with you on your way to the station.
For example:
Large suitcase
Diaper bag
Toy bag
Lunch Bag
Bottle cooler with 2 ice packs
Car seat
D’s Messenger Bag
Coffee Mug (2)
GET FROM FRIDGE: 2 4oz bottles, 1 6oz bottle
GET FROM FREEZER: 6oz frozen milk
C’s car keys

If someone puts something in the car, mark it off. You will know you have everything and not remember half-way though your train ride that the baby’s milk is at home. A million lists and you will remember nothing- just one list with everything you need on it, and you’re golden. Pack your tickets in the most easily accessible spot the night before, lay out your clothes and in the AM you can get up and go!

I hope this helps everyone out there. I have had my fair share of forgotten toothbrushes (I now have an exact replica of ours solely for travel, as well as contact cases), missing “all ready to go lunch”, coffee pot disasters, and the like. I am hoping to spare a few people out there the same fate!

Happy travels!