Tag Archives: baby

Listen to Your Mother… that’s me!

I am still full of awe and honor to have been a part of the 2014 Providence Cast of Listen to Your Mother….

Listen to Your Mother Providence Cast 2014 #aisforadelaide

(My intro written by the talented Carla Molina at All of Me Now):
Chelley Martinka is a Philly native with a little thing for Game of Thrones. A closet drummer, she’s a mom to one awesome kid living with dwarfism and is expecting her second daughter this fall. Chelley is up next with “Do It Ugly.”

Do it Ugly

Everyday, when I look at my planner, I see this quote, Dream so big you’ll look like an idiot if God doesn’t step in!

It’s a reminder to do it ugly. To get in in past my ankles, waist deep. To get dirty, cut- go full throttle.

Growing up, I was loud. I would sneak out. I smoked cigarettes and overly enjoyed cheap beer. I played a lot of sports and I was rough when I did it. I got injured. I suffered from depression. I liked a good party. I liked to study so much I graduated college with a 3.5 in 3 years with almost no friends. I got tattooed. And then got some more. I got dermal anchors before they were a trend. I dated. I over committed to people that needed “saving” and after they were saved, I moved on. I broke hearts. I uprooted myself a lot, took on a lot of jobs, was reckless with my emotions and other people’s hearts.

Doing it ugly was more about how low I could go. How many problems I could fix of someone else’s while ignoring my own needs- uselessly helping others chase their desires. I knew I’d never stick around long enough to see the ending. Like the friend who needed money for car payments… a loan I would never see the repayment of- I worked weeks of overtime. I’m not quite sure why, except it seemed like the right thing to do. I was a wild one with a sucker-streak- looking to take care of all the people surrounding me, and sleeping as little as possible while doing so.

But then it happened. I was approached by a lion tamer with the patience of a kindergarten teacher and heart of a saint. Some have come to call him Dave. So here I was married. A wife. Together we ripped apart the money pit and created a home. We both worked long ours and enjoyed uneventful hikes with our dog and nights by the firepit with friends.

Gone was the Chelley of the past, replaced with this woman who quit smoking, ran half marathons, was letting someone else take care of her once in a while, learned to enjoy wine over whiskey and, for whom staying up late lost its once alluring appeal. Who the hell was I, now?

Not looking for redefinition, she came- The reason I had to get all riled up again. My reason for getting my hands dirty- I was ready for parenting. Here I was, rolling up my sleeves and spending late hours burning the midnight oil- literally- we have oil heat. But I was more than prepared, I’d been practicing to parent this special lady since my days as a rebellious teen.

I knew everything I did from the moment I heard her cry would be things she would be proud of. My perseverance would be her life lesson. I would work hard, and when she was diagnosed with a high-functioning disability, I knew I would dig harder than I’d ever imagined. With letters, videos and a blog, I would educate about our life as a family. I’d take attacks and hard words and fight to change the stigma. I’d create a team consisting of specialists in Massachusetts, Delaware and Rhode Island. I don’t know the answer to that, would be an answer I’d never settle with.

I would allow no one thing would define my sweet girl, a lesson I’d learned from my own mother. Dwarfism, gender, religion or a favorite band would simply be aspects.

I would raise her to be generous, dignified and tough. A woman who could do whatever she pleased, in jeans or a skirt, at a bar watching the game or in the courtroom arguing her case. With my biggest dream being a world that truly sees no difference between my Adelaide and any other human. Recognizing her disability as something about her, not something that defines her.

I spent two days bringing her into the world… and I will give my life to give her dreams so big that she never knows what the ground looks like with her eyes closed.

And while most of my days are beautiful- I work hard to make sure they are. Everything in life that feels like it’s too much is all the more reason to get in there. To do it ugly. Everyday isn’t a fight, but when it is, I make sure it’s worth it, to go hard.

This life is my one shot to make it what I want and give that power to my future warrior woman- and no one will lessen my gusto or dampen my dreams- not even God, herself.

Listen to the cast:

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Filed under Educate/Adovocate/Make Change

Hospital Bag for Mama and Baby-to-Be!

This is what I’m bringing in my hospital bag! I am excited to welcome Millie (yesterday I was 35 weeks!)… and I cannot believe how fast it’s going. I decided to pack a few weeks early so I would be ready to go! (Not seen, but packed: My Birth Preferences, BFing chart- which you can find in Friday’s post, as well as a list of numbers and names that are important- doula, OB, pediatrician, insurance company, newborn photographer, church, and, of course, Mom!)

Roll over each image to learn more:

 

 

 

I was not paid for this post… I just love these goodies! (I did receive a headband from Bzzyfingers… and I cannot wait to buy some more for my sweet girls to match!)

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August 20, 2014 · 7:00 am

LPA Fashion Show #lpaSD2014

While we enjoyed all the workshops that the LPA National Conference had for us, we also loved participating in other events- like the Fashion Show! Check out Addie in her first appearance in the LPA Fashion show at #lpaSD2014!

LPA Fashion Show #lpaSD2014 #aisforadelaide

#aisforadelaide LPA Fashion Show #lpaSD2014 #rehearsal

#aisforadelaide #lpaSD2014 #firsttime LPA Fashion Show

#aisforadelaide #lpaSD2014 LPA Fashion Show #cuteasabutton

#aisforadelaide LPA Fashion Show #runway First try!

#aisforadelaide #lpaSD2014 #finalrunwaywalk LPA Fashion Show

#aisforadelaide #addiandjack ##lpaSD2014 LPA Fashion Show

#aisforadelaide LPA Fashion Show #addieANDPayton #lpaSD2014

#aisforadelaide #LPASD2014 #life LPA Fashion Show


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Filed under Community, Travel

Marvelous Monday

It’s ok that the day itself may not be marvelous, because the life that follows will be.

And that’s the damn truth.

I’ve struggled with what is OK to share, and what isn’t, and while Addie is at such a young age, I think it’s helpful for parents to know about what may happen with their small children, especially their children with dwarfism going through scarier surgeries, like decompression. For us, we may have a special case (Addie doesn’t seem to bounce back from anesthesia very well), but here’s the story.

Many parents have recalled surgeries from years past and reminded me that our kids bounce back. I totally agree that they do- Addie is such  a fighter, sometimes I think she must not be mine. But just because she fights doesn’t mean that sometimes her body doesn’t betray her, or that the bounce that some people recall as “a few days” really was closer to a few weeks… but who can remember years ago in such detail?

So… while it is fresh in my memory, while I’m living it, let me tell you what last week brought us, and why not being 100% doesn’t make this a bad week.

(Disclosure: Addie has decompression of the foramen magnum and a C1 laminectomy. There is a photo at the very end of the post you can enlarge to see the incision.)

Tuesday, August 12, 2014

When we got to the hospital, she was asking for banana. Thrilled that Daddy was going on an adventure during the week, I could tell she knew where we were when we left the car with Hasbro’s valet. We walked in the door, I led the way to the admission room- this isn’t my first time at the rodeo. After check-in, we went up to the 2nd floor to meet with our team, do vitals, review health records… the usual. When I saw Dr. Deer, I was thrilled. I’d requested him to lead the anesthesia team and I could feel myself breathe a sigh of relief when I saw his face. “I knew the name looked familiar…” he smiled… as he’d just put Addie under for her MRI in June. Thankfully, the second I asked, Addie’s neurosurgeon put in my request. Things were starting off well.

After the big stuff was done, we went on to the way cool things, like a syringe of Versed (aka Midazolam, used before surgery or medical tests to make you feel sleepy and relaxed – This medicine is a benzodiazepine) and the playroom. As she played, I reminded Dave to pick her up after a bit because she would get loopy. He grinned and scooped her up. She looked up at him and explained in a slow voice with a beaming smile, something about Sesame Street and Cookie Monster then laughed. He looked at me… “told ya,” I laughed. He was wearing the OR gear that was reserved for me… only I am pregnant and can’t go back to the OR with the gas. I gave her kisses and more kisses and a hug that I could feel was being taken away from me. “OK, Mom. We’re ready. Dad, follow me.”

#aisforadelaide #spinaldecompression surgery #incision pre-op

And they were off. I stood there, motionless, for what seemed like 10 minutes. Then I started to pace. I stood in the doorway when he finally came back towards me- making a right to strip off the gown, hairnet and mask, and then a left to come back to the waiting room. We gathered our bags and headed to the surgical waiting room. The patient progress monitor (sort of like a departures/arrivals screen at an airport, but with patient number and status) was not updating from the day before, and I was apprehensive the whole time because it was never fixed… but with Dave sitting near the phone, I was sure we would know something soon.

And then 3 hours passed into 4. It rang… “You’re speaking with him,” Dave spoke into the receiver. I popped up from the couch where I’d been in a sleepy stupor, started grabbing my things around me and my bag. “Ok, thank you,” and he hung up. “She’s done? Can I see her? What did they say?” In his usual calm demeanor, he told me, “about another hour.” I started the timer. An hour left.

I played with my ribbons relentlessly. Orange and purple she’d said. “Should mommy wear them in a bow?” I asked. “Yes, ok,” she replied. And those were what I was holding on to.

aisforadelaide recovery surgery colors #prayforaddie #incision

At about 7 after 1 (5 hours and 7 minutes after I’d seen her), Dr. Klinge walked in. I looked at her with this anticipation and excitement that felt like it was jumping off me. As she sat down, we talked about Addie’s compression and how it looked once she got in there. She showed ultrasounds that she took of the spinal cord, the flow, and discussed how there was some scarring around her dura (the outermost of the three layers of the meninges that surround the brain and spinal cord) and pinching. I heard nothing except, “no permanent damage. We took care of it all…” as she talked on. I was handed a bag of Addie’s baby curls with her name on them, and  “Do you have any questions?” she asked.

“When can I see her?”

She smiled at me and we talked a bit more… and then she left. Addie would be going to her PICU room before we could see her (skipping the general recovery area), and after what seemed like an eternity, I saw him. Dr. Deer walked toward me and I stood so fast my chair fell over (to be fair, the HUGE bag of Addie’s medical history was on the back). I scrambled to grab everything as he told us she did great and we could come back to see her. As he scanned his badge to PICU, my heart was slamming. “She’s asking for something… a bunk…” the nurse trailed off. “Binky bunky!” I grabbed her pacifier, lifted her mask and placed it in her mouth. Immediately she calmed… but once she saw Dave, she begged to have him. He sat down and held onto her with all his might as she settled.

#aisforadelaide #spinaldecompression #surgery incision #recovery

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The first night was rough, but we made it through. As the nurse told me what her lines were for I cringed. Fluids, morphine, Valium. I felt like I was in a panic and was pretty stressed out. Dave got us dinner and even in her stupor, Addie was thrilled that my dinner included guacamole. After we got  her settled, Dave went home for the night. Around 3am I woke up and paged our nurse. The pain in my right side was excruciating, my belly was tight… a contraction that wouldn’t let go. “Do you want a wheelchair?” Julie, our nurse, asked. She was so nice… looking at me with encouraging eyes- I think she wanted to wheel me to Women & Infants. “I just need to drink some water,” I assured her. For about 20 minutes I stretched, drank water and walked around. Finally, I was able to lay back down. Scared I was going to bring labor on, I did my best to sleep, but around 4am, Addie woke up. She was puffy and itchy and wanted to be held… so I did what any 34-week pregnant mom would do. I adjusted myself as best  I could and held her to my chest. She immediately went back to sleep and I cried into her shoulder.

#aisforadelaide #recovery #dayone #incision Spinal Decompression Surgery

Wednesday, August 13, 2014

Her first PT and OT session went well, although she was shaking due to lack of food and a high dose of meds, but… I got my first smile! And that made my heart soar.

#aisforadelaide #firstsmile #recovery #surgery #postop #incision

We left PICU around 1pm Wednesday, and Addie had some visitors, which made her quite sleepy!

#aisforadelaide #recovery #day2 #sleepingtoddler #incision

She wept a lot throughout the day, and stayed on her morphine and fluids, barely eating anything. Dave came as soon as he got out of work, which was just what she needed. Addie had woken up in a stupor around 6:15pm and screamed for him for a better part of an hour as multiple people tried to console her, including her Auntie Ashley. But then Daddy was there… and all was well in the world, again. Daddy makes everything better, with our one mishap coming when the line in her foot loosened as it was being taken out and blood went everywhere. Thankfully, it was one of those “looks worse than it is” things (and no, I won’t show you the picture).

#aisforadelaide #addieanddaddy #recovery #spinaldecompression #surgery #incision

We snuggled in for the night, and Dave tucked us both in with her gently whimpering for him. The wrap around her head was bothering her, but I was glad it was there. I wasn’t ready to see the full incision, which was only half visible from underneath a piece of gauze. When Addie rolled over a while later, screaming in pain, I buzzed the nurse, who came in and put another dose of morphine on for her. She looked at me through drowsy eyes and asked for “mama’s pillow”… the pregnancy pillow I’d brought for myself now neatly nestled her small body in it’s curve, leaving me with the hospital pillows to ease my aching body. Her body was wrapped up in barely anything, but she was running warm and we monitored her fever, which stayed low, throughout the night.

#aisforadelaide #addieanddaddy #incision #spinaldecompression Conversation with Dave

Thursday, August 14, 2014

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Thursday went well, with a PT trip to the activity room, a visit from Grandpa and Poppy (Dave’s dad and grandfather), and time spent with Namah (Dave’s mom). When the bandage was removed, she put her head in my hands to scratch- I went to town, gently rubbing her forehead and behind her ears. I could feel her body relaxing. When I first saw the incision I was taken aback. It was beautiful- her warrior badge shown upon her little head with such gusto and force. It almost took my breath away. From where I was sitting, it looked like 6 inches. There was something so unobtrusive about it… it was there, but her hair would cover much of it, and the stitches, being dissolvable, were not dark or menacing.

#aisforadelaide #day3 #recovery #spinaldecompression #surgery incision

She did great all day… most of the day, but after nap time, she was irritable and upset. She’d slept through her medication time, and because we were trying to go all by-mouth, she was unhooked from the IV. My mistake for thinking her being asleep was substitute- when she woke up she was grabbing her neck and screaming through tears. I buzzed the nurse who rushed meds in for her. As I calmed her and gave her lunch, she felt warm. We continued to monitor her fever, which stayed low into the night.

Addie had taken all of her medication by mouth the whole day, and thus we were almost a shoe-in to go home the next day! As I settled her into bed and laid down next to her, we both drifted to sleep. I felt Dave kiss us both and whisper I love you before leaving. I wanted to cry when he left… even though I was mostly asleep, I missed him at night. About 2 hours later Addie woke up screaming. We got her some more meds and she looked at me with these big pained eyes. I felt awful. Her fever was almost gone and she just wanted to go home. “You want to get out of here?” I whispered. She grabbed my face and smiled before we both tried to go back to sleep.

#aisforadelaide #recovery #PT #incision

Friday, August 15, 2014

After not sleeping much (she somehow takes over all beds), I hopped up and was dressed and ready for discharge before Dave even got to the hospital for his morning visit.

#aisforadelaide #pregnancy #34weeks #baby2 #camillethea #recovery #spinaldecompression #surgery

The pediatrician came in (I love that our pedi checks in with the hospitalized patients every day) and looked in Addie’s ears. With a diagnosis of no ear infection, we knew that muscle spasms were responsible for some of the waking and night screams. I agreed to leave the hospital with a script for a muscle relaxant… For my two year old. This idea went against every fiber of my being, but her being in pain wasn’t something I could handle. We were almost packed and ready to go when we got word that neuro was backed-up and wouldn’t be up to check Addie out for a while. With a sad goodbye, Dave made his way into work. As he left, I checked her head. She’s warm. “100.9°, mom. We’ll keep an eye on it.”

For hours, no one came. I tried to get fluids and food into her, we met with PT and played, and she rested. Slowly, with some meds, the fever lessened- and being under 101.5º, the neurologist agreed we could be discharged. If you know anything about the discharge process, it’s not quick. Paperwork to leave, scripts, instructions and signatures all need to happen before we get the approval, but when Dave came back at 6pm, we were ready. With bags, balloons and flowers in the wagon and Addie chomping at the bit to “please, I go outside now,” we made our way to the revolving door of Hasbro Children’s Hospital.

#aisforadelaide #spinaldecompression #incision #balloons #getwell

As she brushed her teeth for bed, I ran downstairs and grabbed my measuring tape. “I need to know,” I said to Dave. He knew what I meant. “Exactly 3 inches,” he said. And that was that. Our first night was OK, with bags of liquids, diazepam in pill form (yes, a pill…) and some sorbet for good measure, I left CVS. Addie took her meds with some disdain and headed to bed, waking only once and settling with a second dose of medication and some snuggles, until 7:30!

Saturday, August 16, 2014

With a morning reminiscent of most other mornings at home, Addie wanted to do something… so we headed out to the Hope Street Farmer’s Market in Providence (RI). She did great, and though I was upset about one person who sidestepped me and got in close to Dave’s shoulder checking out the back of Addie’s head, our mid-afternoon adventure was great- running into friends and enjoying some fresh air!

Addie came home and took a great nap, again waking in pain. Managing sleep times and pain management is a challenge I don’t think I will ever truly conquer. For the rest of the day she was OK, coming out of her grogginess and enjoying a trip to the grocery store for some dinner staples. But then sleep came in clips. After settling in, she woke up screaming and grabbing her head. I could see she was trying to get out of bed- not a good thing for a toddler on muscle relaxants, so Dave ran in while I went downstairs to get her meds. She settled in with him, but just an hour later was up and screaming again- at her door! I picked her up and brought her into bed, where she continued to scream through the night… unable to tell us what was wrong, Dave and I could do nothing but hold her and try to get her in a comfortable position.

Sometimes I feel helpless as a parent… this was one of those nights I felt like a total failure. Her cry left me in pain, and my inability to fix it left me in shame.

Sunday, August 17, 2014

I first saw her Sunday morning when Dave carried her into the bedroom with my coffee. My eyes half opened, I heard her squeak, “Good morning, Mommy!” My heart felt lighter… she was doing OK. Dave looked a little rough, but I knew he would be fine. Our day, as all the others since the surgery, was up and down. There was some crying and pain, but there were also moments of love and snuggles. Her love of being outside and exploring, hand holding and snuggles made their way into each corner of our day, and we’re on the mend. We’re getting there.

#aisforadelaide #addieanddaddy #spinaldecompressionsurgery #recovery #theresnoplacelikehome #snuggles #incision

With just 5 weeks to go to 40 weeks, Dave and I are laughing at the lack of sleep… Hardcore prepping for baby two, people have jested. Loving our girls and giving them all of us, is more like it. Martinkadelux- always a team.

Here’s to a beautiful week, Reader. Mondays where we choose to see the marvelous, create it for ourselves and spread it to others.

love,

WARNING:

BELOW IS A PICTURE OF HER INCISION BY THE DAY:

#Aisforadelaide #decompressionsurgery #incision

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Filed under Achondroplasia, Marvelous Monday, Parenting/Family/Lifestyle

Marvelous Monday

“How many times has this happened?” She asked me to repeat the number.

“Six. But only 4 times this year.” It was May. I knew our batting average was not good on this one.

“I’m going to refer you to a neurologist just to get her take. Other than that, she’s perfect- don’t you worry.

Marvelous Monday Decompression Surgery #aisforadelaide

I’d heard that before. When Addie was a newborn, I was told not to worry. A lot of kids have big heads, but they just wanted to be sure. I’d pushed to know more and at 9 1/2 weeks she was diagnosed with achondroplasia. And here we were. I’d pushed it. I’d asked if these blackouts were normal. She’d hit her head. No breathing, loss of color, completely limp, eyes rolling. 10 seconds with a lifeless body that would spring back the with force of the Devil inside, screaming. Followed by a headache, but other than that, back to herself. Six. Times.

“So she hits her head, cries, then stops and passes out? Sounds like she’s holding her breath.”

“No,” I responded. “She hits her head and nothing. I pick her up, trying to stop her fall from the beginning and nothing. She is lifeless. Then she comes to. She doesn’t cry first. She’s not holding her breath.”

“I see.” I see, too. Her hands furiously typing into the tiny laptops that the hospital just implemented in their paperless plan. She’s slamming at the keys, catching each word.

“Does she  ever get headaches?”

“Yes, but they’re weather related, my husband and I get them too. She has them a few times a month.”

“So you all get headaches at the same time?”

I paused. I felt hot and upset. “No, we don’t.” I’m wracking my brain. Dave and I get them on the same mornings, but not always Addie. Some days she just rolls around holding her head, and some nights she’s done this. “But it’s not all the time,” I’m sputtering. I want to take it back. How did I miss this?

We talked for a while longer. We did a neuro workup… a few times. Then, “I’d like to order an MRI to check it all out if that’s OK with you, mom.”

I left with papers and numbers and numbness. From the first hours I spent reading about achondroplasia, I feared decompression surgery. The recovery, pain, spinal cord, scarring. Everything about decompression scared me.

The MRI was done, and that was that. I was sure she was fine. My achon baby who walked at 16 months, spoke in full sentences, showed no significant apnea after age 1… she didn’t have classic signs of compression in her spine. She was fine.

She was fine.

I got a call the very next day from a doctor. The neurologist didn’t like the MRI, the neurosurgeon didn’t like the MRI. The story, the images. They were not great news. “Give her office a call. They will get you an appointment soon.” The appointment they  gave me was nearly immediate.

We discussed surgery, but nothing was in stone. I wasn’t convinced. I wanted more opinions and I would get them in San Diego from our specialists- but after the images and story, the answer was still clear as mud. Sure she falls a lot- all kids do. The blackouts may not be from compression. Her images are not indicative of surgery. Our doctors could go 50/50 on the surgery. I felt lost, but with an order for more images. They would tell us something. They must.

So last Wednesday we headed to Boston. Hungry and hot, Addie was ready for whatever was in store so long as she got to eat at some point. By 3pm they finally took her back- she was so loopy from the meds that she could hardly whimper when I handed her to the anesthesiologist, but I was still torn apart. We met back up in recovery, where Addie was still asleep. There was a laundry list of medications, and my usual lion woke up rather calm (read: drugged) from the anesthesia with her usual intubation-throat, looking for snuggles. At last, we were in the car and headed home.

By midnight we were mostly asleep, but not ready for the next day.

We walked into the APC building at Rhode Island Hospital- full of angst and armed with her MRI from the day before. We talked again. I mentioned her falls seemed to be from slow feet. Her waking in the night. Her headaches that still happen, but not often. We talked about how she hangs her hands funny sometimes, but she seems strong. There haven’t been any blackouts since April- she hasn’t gone backwards since then. Then there was a neuro workup.

At first, I thought it was my mind playing tricks, but as the specialist hit her heel, I saw her foot jerk. The fluid motion I was looking for, the common reaction of a reflex was replaced with this ugly movement. Taking her foot in her hands, she pressed up, let go and checked with the hammer again. “Clonus.” I said. She looked at me with sad eyes, knowing eyes. She recognized defeat in my voice. I had nothing left to fight about. Clonus is a sign of neurological hindrance (a continuous rhythmic reflex tremor initiated by the spinal cord below an area of spinal cord injury, set in motion by reflex testing). Catching it and treating the compression would be key in keeping Addie healthy. She could eventually stop walking and suffer from severe spinal damage without it. Decompression was the way to go. I had my answer.

All I could think was fucking clonus.

The neurosurgeon came in. More people checked. Sure enough. What wasn’t there just a few weeks ago was emerging. You can’t make this stuff up. I was near speechless.

I’d wanted an answer. I said I did, at least. I wanted a yes or no, and I was looking for reasons. There it was. Coming in little jerky, hesitant motions. I signed the paperwork for her surgery (which is happening tomorrow) and we headed to the lab.

“Her veins roll away,” I said. “They look closer to the surface than they are. Seriously- they will try to escape. They’re hard to get on her.”

“We do this a lot,” she said back with a polite smile. No one likes to be told how to do their job, but to be fair, I warned her and I know my child.

They pulled the needle out 3 times, and moved it around in her small arm a dozen times. “I got it,” a phlebotomist beamed. The second one who’d tried. I was annoyed, I was crying. I’d told Addie that this day wouldn’t hurt. We were just going to talk to the doctor. But here she was screaming from her back, “No mama. I want uppahs. Please pick me uppahs. You said. You said. It hurts.” I tried to take it on, “I’m so sorry, bug. I’m so sorry I lied.”

“YOU LIED.” She screamed. It came in a spit. A slap in my face. She was covered in snot, and red-faced. The fear spilling from the corners of her eyes. I started to heave into her neck. She suddenly stopped crying and began to stroke my face. “Don’t be sad, mama. It’s ok. You ok, mama.” I stopped my tears. This was her moment. She began to whimper again into my chest. They taped the gauze on and she practically leapt into my arms.

We got home and she fell right to sleep. She napped. I made lunch and I started some laundry. I called Dave to tell him everything and I answered all of his questions. I joked on the phone with my mom about attempting to get a urine sample from a 2 year old. I sat down to work. And then it hit me. I started to panic. I lost my breath. The scar. It would be on her neck forever. I didn’t want her to have that scar.

It’s not the aesthetic I worry about. It’s her sweet neck. Where I nuzzle. Where I pull her hair up and the most graceful neck appears, balancing her head gently upon her shoulders. Long and lean. Untouched. Beautiful. There will be a scar in that place, to constantly remind me: I couldn’t fix this. I’m her mother, and I could do nothing but hand her over to a team of specialists.

As I came out of my panic, I decided I needed to put time aside. This week, as much as I want to write because I love to write, I will not. Of course I have work to do, but who I am means more. And who I am is a mother, a wife. I need to support my family this week and appreciate all of your love and concern as we regroup and work through this. As Addie goes through decompression surgery, we too must decompress.

Spinal Decompression HOlding Hands #aisforadelaide

I’ve spent weeks in denial- maybe months. I ignored a lot of things, never mentioning them except to friends because it was just Addie being Addie. Headaches I kept calling seasonal. Falling that looks like she was dizzy. Holding her hands in a funny way some times- almost floppy. Blacking out entirely when she hits the back of her head. Holding her neck. Screaming at night (which is pretty new). Gasping for air in the night, but not related to apnea (still sort of a mystery and hoping surgery helps). And now, clonus. I’ve denied it all too long, and I could not be more thankful to the multiple doctors who pried and asked more questions, forcing these things out of me. Showing me that decompression, though scary, is truly the direction we’ve been headed. Her strength, both physical and mental is sure to be tested, but our girl will be strong. My warrior.

Addie will be at Hasbro Children’s Hospital from Tuesday to possibly Friday (hoping for discharge before the weekend and maybe earlier), and I will be by her side the whole time. Her recovery means more to us than anything now, and while I can’t wait to be back (I love to write and share!), I have to take this time for family.

Have a beautiful week, reader. Talk soon,

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Filed under Achondroplasia, Community, Educate/Adovocate/Make Change, Parenting/Family/Lifestyle

50 Things *This* Mom Would Miss About Life before Kids

I read an article about 50 things moms miss about pre-kid life and while I understand it, I didn’t get it. I laughed a few times- how fun the old days were, with friends I thought I’d know forever. We shared so many secrets about life and lovers we totally thought would last forever- and they were there to buy me shots when it didn’t. I bummed cigs, stayed up late, didn’t worry about not having enough food to eat because I could just skim the samples at Whole Foods for a night. I worked a lot of jobs, and remember how fun it was to take off for the beach at 3am to see the sunrise at the Jersey Shore when I arrived. That was fun for me, then. At 22. We were friends then, bonded by whatever was going on in our lives then… maybe they’d still be here if someone had called more, or if I had the desire to drink whiskey at 11pm, or whatever the case may be. Here, at (almost) 30, I have no desire to live how I did before (remember the time I lived in an illegal warehouse space that had electric heat, so we didn’t use any in the dead of winter?)… I had a lot of fun when I was young and I have a lot of fun now. So, while I feel blessed to share wine with the women who have become family, I certainly don’t want to overindulge and sleep in, because hangovers have just never been fun. Friends who aren’t really there for all the ups and downs of life aren’t that fun. Coming home to an empty house isn’t that fun. But that’s just me. JUST ME!

Life Before Kids I would miss you even if we never met #aisforadelaide

I think these lists are fun, and I wanted to make my own. Please know: I never really slept much anyway (I used to run at 4am), and I still walk around my house pretty much naked, sex is spontaneous at 2am, I still have hobbies, I grew up in a Catholic and Jewish household so guilt is just something I deal with, and we only have one bathroom- this means I was never alone in it anyway- there was always a dog or cat or dude in there with me, talking to me through the door, or pawing (knocking) to get in.

So, here are 50 things I would miss about life if I didn’t have kids.**

1. Reading all those great books I forgot about.
2. Baby snuggles… especially on sick days.
3. The smell of milky breath.
4. Baby curls.
5. Tiny hands, and holding them as we walk (even if forcefully!).
6. Late night laughter from being beyond tired.
7. … Looking at the monitor and remembering it’s all worth it.
8. Appreciating the time I sleep in.
9. Finally using the microwave! (Hello, reheated coffee!)
10. Learning to experiment with new foods.
11. Drinking in moderation (finally).
12. Community.
13. Creating life.
14. Playing dress up (and wearing fancy clothes to the store because your toddler really wants you to wear those heels with that dress at Target).
16. The chance to sing aloud without fear.
17. Dancing like a fool without judgement (hey, it’s for the kids!).
18. Knowing glances with the mom of the other screaming toddler at the grocery store- being in the club!
19. Watching a mind work.
20. Vacation photos in the same places I took them 30 years ago!
21. Having a good (and cute) excuse for a messy house.
22. A friend for the dog that doesn’t need to go on a walk in the heat, snow, or rain.
23. A running buddy.
24. A constant backseat driver.
25. The reminder that no gift is as cool as Christmas lights and a few empty boxes.
26. Having someone with my same attitude to keep me in check.
27. A chance to figure it all out… again
28. …and to be reminded that I really know nothing.
29. Appreciating good conversation.
30. Being able to adapt.
31. Finally knowing who I can rely on at 3am for help.
32. Relating to my mother in new ways.
33. Having a sleeping child on my shoulder.
34. The money saving perks of fewer and shorter showers.
35. The drive to eat organic and keep only healthy foods in the house.
36. Days where there’s someone else who just wants to stay in bed and watch Disney movies all day.
37. Making up words to a song and no one correcting me.
38. Knowing I have super powers to keep another being alive!
39. Watching my partner grow into a new person.
40. Friends who become aunties and uncles.
41. Seeing my flaws as “bootiful, mama”.
42. Tickle fights.
43. Built in diet of never being able to eat my own food.
44. Learning to be resourceful.
45. Breastfeeding.
46. Showing off awesome boobs during pregnancy and nursing.
47. …and justifying the expensive bra after it all.
48. Kid selfies.
49. Having someone genuinely believe I’m beautiful.
50. Being a mom.

**At the time of writing this, I am incredibly emotional about being a parent. This piece is not meant to upset people who, of course, love being a parent but sometimes need a break. I think I’m almost jealous of that, honestly. Sometimes I am so immersed in all the medical stuff that surrounds our lives that I don’t want to get away from parenting- I’d take it all- but I want out of the medical things that come up so intensely fast. Some months have been so easy and some of these things she will age out of, but right now, I miss nothing of my old life… I just miss my child being healthy.

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Filed under Parenting/Family/Lifestyle

Birth Preferences for Your Delivery

If you asked me what my plan was for giving birth, it would be quite different from my preferences. While I would plan to be having a manicure during labor and most certainly a Swedish massage during transition, my plans would never come to fruition- even if I had the money to fund such nonsense. I would plan to not be in pain, for it to last less than 10 hours total, for the room to be always at a comfortable temperature (regardless of how hot I am) and for there to be no such thing as sweating involved, please and thank you.

These are just silly plans, however, and while I love making a list of things I’d like to be, I call my list “Birth Preferences”.

Like a simple resume, your preferences sheet should be only 1 page, 1-sided. By definition, a birth plan is a document that tells your medical team your preferences for such things as how to manage labor pain. But please know you can’t control every aspect of labor and delivery, and staying flexible in case of (…) is the most important part of writing your plan. Knowing that things can happen and being comfortable with deviation… that’s really the start of parenthood! …and when all else fails in the process, remember your codeword (give it to your partner, or team as an indicator for when you are truly sure that you cannot continue- should you get to that point).

The biggest part of my birth preferences began with selecting my birth team. I chose a different doctor this time around, feeling sad with my practice after my last doctor left. I also chose the same doula team, Blessed Beginnings, for their love and support. My Mom will again be there for the delivery (someone has to be below the neck) and Dave will be my rock, of course! While it’s not written down, I know that my mother-in-law will have Addie with her, as “Namah” is the person Addie spends the most time with apart from Dave and myself!

If you’re looking to get started on your own birth plan, I suggest doing so in the first or second trimester and altering it as your pregnancy evolves (as your birthing education will too!) and then bringing it to your doctor or midwife around week 36 to review and get ready! I get my birth preferences signed so that I know my doctor isn’t seeing this document for the first time upon my entrance through triage. I also leave a copy with the doctor in my file, my doula team has a copy, and I pack 2 in my hospital bag- one to give at admission and one just-in-case… making copies of the original signed form so my team can’t say they’ve never seen it before! Better safe than sorry!

I did change our birth preferences, as with Addie I wrote that I didn’t want to be tied down under any circumstances, but I think that’s extremely rare now! Remembering that our hospital is a teaching one, I preferred to have no students last time and wrote that in… this time around, I couldn’t care less. Just one way I’ve changed, I guess! I also took out that we were donating cord blood. We tried with Addie, but due to the delayed clamping, the donation center said there was not enough blood left in the cord. While I would have loved to give back, it is more important to me to let the cord give all it can to my babies before cut. And… before you cringe, I am encapsulating my placenta again.

Placenta encapsulation meme #aisforadelaide #birth #naturalbirth

One of my favorite memes from www.placenta.co

Without further adieu, here’s what I’ve got on my birth preferences worksheet!

CamilleTheasBirthPreferences #aisforadelaide #birth #pregnancy #options

(CLICK TO ENLARGE!)                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                     Have your doctor/midwife sign after each section so you know they read it!

 

Did you create a Birth Plan/Preference for your delivery? What was on your list?

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Filed under Pregnancy/Birth

Sibling Rivalry… mom’s pre-birth edition #babynursery

The love you feel for your child when you imagine them, conceive them, first meet them… they’re all different loves, but somehow none are more or better than another. It’s just evolving. That is how I feel about becoming a mother again. There are fears, of course, but mostly I just feel my love changing. I feel my heart expanding and my ability to somehow love two humans so completely and fully without a more-so-lesser-than apprehension. I just love.

So, why is Millie’s room still not done?

Well… it’s not to create sibling rivalry and it’s not that I don’t care. I mean I totally had a meltdown the other day when my mom couldn’t find our bedding which is being discontinued. Thus far I’d only had curtains and I was a mess when she called to tell me that the bedding was nowhere. When I finally found it I was so panicked yet relieved, that I posted my I’m crazy and I know it brag on a birth board I am on:

#aisforadelaide #CamilleThea #nurserydecor

Ummm… legit. I really needed it. Oddly, Addie’s bedding was being curtailed at the end of my pregnancy with her, too and we went on a mad dash to find the bed skirt, which I’d gotten and washed and dried on high heat, which melted (!) part of it. About 50 calls to different stores and we had it. Similarly, I found the bedding and now we are on a mission to get her the things to go with it (accents make all the difference!). I know it is just bedding, but have you ever told a pregnant woman, relax, it’s just…? Yeah. Not a situation you want to be in.

So… we have done a few things… a very few. And this is where we are now. Oh my, how far we are! By this time with Addie, we were set up and washing baby clothes, cooing to ourselves as we sauntered past her bedroom, just waiting for her arrival. I would come home from work and sit in her chair and imagine what it would be like when she was finally here. And now… I am imagining how I will get it all done with two, and loving every moment of my dreams because I know when I am in it, I will feel like I’m in the weeds (anyone else have a culinary background?) and be overwhelmed.

In truth. I am just in love. And as with all love, this love is different. It is complex, and whole, and admiring. A little girl to love and hold and learn from her big sister, the way only a sister can learn. A baby girl is coming… and thankfully, she will be in our room for at least 6 months, because her room might never be completed!

#siblingrivalry #aisforadelaide #camillethea #todolist #babytwo #nursery

Did you run into delays with your second children? It all gets done eventually… right?

 

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Filed under Parenting/Family/Lifestyle, Pregnancy/Birth

Where to Eat in San Diego #lpaSD2014

Going to San Diego was a dream for us. For a family it’s an extremely friendly city, but more than all the amenities needed to enjoy a city by foot, you could eat your way through it and never get a bad bite! We stayed at the Manchester Grand Hyatt, which is a beautiful resort near some amazing eateries. Lucky for us these hot-spots were also kid-friendly! (My biggest regret is not getting more food pics… oops!) So… here’s the question: Where to eat in San Diego?

Upon waking on our first day, we were pretty hungry. As a breakfast aficionado, I knew I wanted something good. Not just good. I wanted hot coffee that was roasted so perfectly it didn’t need sugar. I wanted hot, fresh eggs with soft breads, and a homemade vibe. San Diego did not disappoint. As we approached the front desk they pointed us in a few directions… we landed on Café 222. Although it was the furthest from the hotel (a whole 5 minute walk!), the number “222″ has meaning for us.

Where to Eat in San Diego #travel #foodie #aisforadelaide #cafe222

There was a minimal wait when we arrived, but we were able to grab menus AND coffee- delicious coffee!- while we waited. Dave and I already loved the scene, so we were just waiting for the food! As I opened the menu to make a decision- not an easy feat for a pregnant woman- I realized I could eat here everyday and never be bored. Choosing the Benedict was an awesome decision… but I wish we’d gotten back for another dish. Dave (and Addie) thoroughly enjoyed his orange pecan pancakes, with sausage on the side. Our waiter was a delight- showering Addie with attention and clearing and refilling without ever being asked. The tiny establishment filled up quickly, but we were never rushed and I LOVE the servings! It was enough breakfast for Addie to have a bit of each of our plates without needing to order her own dish, and I was full at the end, but not stuffed.

Where to eat in San Diego #ThatHappened #Travel #aisforadelaide #cafe222

As we walked back to the hotel I wished I’d grabbed one of their shirts! Seriously one of the coolest breakfast joints I’ve ever been to.

San Diego was looking tasting good!

The following day we met up with my parents who had come to San Diego by way of Philadelphia and were still adjusting. We decided to head across the street from Manchester Grand Hyatt to The Headquarters and see what it had in store for us. A beautiful center surrounded by shops and restaurants engulfed us, and as we walked into Pizzeria Mozza, I knew we were in for a treat. Upon ordering our salad, Nancy’s Chopped Salad (as in Nancy Silverton!), I scanned the walls and saw who else comprised the team of Pizzeria Mozza: Mario Batali and Joe Bastianich! I felt like I was in the graces of the food gods! Yum!

Where to eat in San Diego #pizzeriamozza #Aisforadelaide #travel #foodie

With 4 adults and 1 toddler, we ordered (besides Nancy’s delicious Salad), Bruschette of Pane Pomodoro with burrata, speck and pickled ramps, Margherita, and Prosciutto di Parma with rucola, tomato and mozzarella pizzas. It was light but filling, and I loved the location! The menu lends itself to both lunch and dinner, and is the perfect place for group gatherings, too. If you know Joe Bastianich, you know that his wines are nothing but the best. Next time we find ourselves in San Diego, you can be sure that I will not be pregnant and enjoying a few wines from his collection.

San Diego once again wowed us with food!

For dinner we found ourselves back at The Headquarters, but this time at Puesto. Twice.

Where to Eat in San Diego #puesto #theheadquarters #foodie #travel #aisforadelaide

No joke. We ate dinner there two nights in a row because we couldn’t get enough!

Where to eat in San Diego #Puesto #travel #martinkadelux #aisforadelaide

Their award winning tacos, open kitchen and restaurant design, friendly staff, Tuesday night $2 tacos, and their beer selection kept us occupied- and wanting more- ever since we left! The first night (Monday) we were blown away by how good everything was- fresh ingredients were just the beginning. Dave enjoyed Blood Orange Wit by Refuge Brewery so much I tried to have them ship it to him for our anniversary!

Where to eat in San Diego #martinkadelux #aisforadelaide #travel #foodie #mexican

We also loved that the location is perfect, and the restaurant is OPEN, literally. There is a huge garage bay door that opens to the outside from the main seating area- where there is more seating! While the establishment is huge, it’s layout is deceivingly cozy and appealing for everyone- from couples to families and large parties.

Where to eat in San Diego #puesto #mexican #aisforadelaide #foodie #travel

Puesto is a place where I took a million pictures… mostly because Addie was SO in love with their food, it was hard to not keep snapping away. Of everything we ate besides tacos (which included quite a few starters), I will say the Mexican Street Bowl blew me away. There was spice, sweet, crunch, softness, and it was visually stunning. I wish I had ordered it the first night we were there so I could have gotten it again Tuesday night! All-in-all, Puesto wins our heart for best place we ate in San Diego, no doubt! And on a Tuesday night, you can get two drinks, feed 2 adults and a toddler with tacos and apps, tip well and still spend under $50! That’s one heck of a thing to celebrate… especially in this infamously expensive city!

Where to eat in San Diego #puest #theheadquarters Mexican Street Bowl #aisforadelaide #travel #foodie

Where have you been in San Diego that you could rave about?

 

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Filed under Reviews, Travel

Marvelous Monday

It was Hell. The week (plus) of recovery that was supposed to be “a few days”.

I wish that was an exaggeration, but as far as common procedures go, tubes and adenoids tops the list. For Addie, there was the consideration of her spinal compression, so we stayed one night for observation where she turned up roses. The kid was a peach.

Then Wednesday struck.

Let’s start with admission…

She was great! We played and I wore a hairnet over my hat and looked really cool. (I was annoyed by one of the nurses who kept reading her name as “Adeline”- not a great way to instill confidence in a parent- but other than that it was OK.

#aisforadelaide #smilethoughyourheartisbreaking #hospital #surgery

I wrote about the surgery before… it was fine. A-OK. And then we made it to recovery… where she was upset and groggy and didn’t really want to come out of it until we’d been wheeled to her room for our stay.

This made for a late night-  so it was nice that Dave came to the hospital and stayed with us until after midnight when she finally nodded off. We’d all eaten some Boston Market (my pregnancy fave!) and watched some movies and I was feeling relieved that, besides some pain, Addie seemed to be bouncing back quickly!

#aisforadelaide #recovery #surgery #hasbro

The next morning was still uneventful as a few of our doctors were at the hospital that morning- the pediatrician, neurosurgeon and ENT- we got a few visitors and I grabbed myself a coffee from the cart before being handed discharge papers, a bottle of ear drops and heading towards the elevators. Good-bye 5th floor!

#aisforadelaide #readytogohome #recovery #adenoidectomy

Addie still seemed great, if a bit groggy, but I expected nothing less, so we headed home. After her bath she asked to sleep, so I tucked her in bed next to me and while I worked on the laptop, she napped. It was a loud nap- her snoring was rattling my brain and she cried in her slumber. When she woke up I offered her something to eat to no avail and gave her some Motrin, as per doctor’s orders. The night got progressively lethargic as she didn’t eat much dinner and was fussy to sleep.

It was well after midnight and I’d just finished working for the night when I saw her pop up on the monitor. She shot straight up and started to cry. Something is wrong, I felt it in my bones. I ran in, Dave and I practically knocking each other over to get to her and as he shut off her air conditioning, I brought her into our room. I could feel her warmth, and as I made a request for the thermometer I felt the hot, wet slip down my back. Sweet potatoes. The ones I’d made for dinner. They’d reappeared for us onto the bed, so I stripped us both and went to wash up while Dave helped and switched the bedding.

I called the emergency line for the ENT. The doctor told me to keep her hydrated and medicated to keep the fever down and call in the morning. The fever didn’t break for days. Food was nothing Addie desired- not even popsicles or pudding. I could see her ribs. And she cried through every night, even with the ibuprofen and acetaminophen regimen we had. I felt lost. When she finally was feeling better enough to get out of bed, I saw that her head was tilted slightly forward and she wouldn’t move it up. We went for a trip out of the house- the first in days- and she’d found a way to maneuver herself so that her head wouldn’t move. While I was impressed with her resourcefulness, I was scared, too. Why was her fever still there, and the crying in her sleep and now she wouldn’t move her head…?

We went to the pediatrician. We called the ENT. We conferred with the end result exactly as I’d thought: Addie was having an extremely rare, albeit not unknown reaction to adenoid removal.

#aisforadelaide #adenoiectomy #rarereaction #surgery #recovery

But now we are here. With the help of serious antibiotics, a lot of time in bed, and fluids, and after 11 days, Addie was on the mend and closer to being herself! I am thankful for recovery… and life lessons. Many times I thought I knew what an outcome would be, and many times I’ve been wrong. In this case, I knew that Addie would be OK, I just expected it quicker. She’s my warrior and I realize that the time it took for her to heal is that what makes her so- it’s the fact that she did it with such  courage. While I felt a breaking inside, she never did. Every time I asked her if she was OK, she would take my face between her hands and kiss me. She never answered. I don’t think she wanted to tell me, “no,” no matter how bad it hurt.

How could I not be thankful for this blessing… A child who looks out for her mother.

As we embark on this week with an MRI and the final decision as to whether Addie will have spinal decompression surgery, I open my mind to being stronger and more supportive of whatever is thrown at me- because this isn’t about me, this is about Addie and she deserves that much in a mom.

#aisforadelaide #perfection #recovery #surgery #adenoids

Your love and prayers are, as always, appreciated.
Have a beautiful week, Reader.

love,

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Filed under Achondroplasia, Marvelous Monday, Parenting/Family/Lifestyle