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.”
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.
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.
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.
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.
We left PICU around 1pm Wednesday, and Addie had some visitors, which made her quite sleepy!
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).
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.
Thursday, August 14, 2014
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.
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.
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.
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.
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.
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:
I cannot thank you enough for sharing this and thus preparing those that might have to follow. What a courageous mom and daughter you are and what a model-daddy being there for the two of you. May everything be smooth sailing from here on. Your little angle surprises me with her communication skills. Is it not far and beyond what is ‘normal’ for her age? Clever little girl. It can only be the one on one attention she gets from mommy and daddy. Good for you.
Thank you! She is doing so much better already!
martinkadelux recently posted…Listen to Your Mother… that’s me!
As I have stated before, you are such a strong mama. Your daughter si just precious and I hope that she has only better days to look forward to.
Elizabeth @ Being MVP recently posted…Trendy Bambini + #Giveaway
Thank you so much, Elizabeth!
martinkadelux recently posted…Listen to Your Mother… that’s me!
Good luck with the next 5 weeks! You are such an awesome mom.
Thanks, Daisy!
martinkadelux recently posted…Listen to Your Mother… that’s me!
Big hugs to you 🙂 You are one very strong Mama and that pretty girl of yours need all the strength as well. She is one adorable girl and wish her the best of health.
Jessica Cassidy recently posted…How do you get your energy back when you have your monthly visitor
Thank you for your well wishes, Jessica!
martinkadelux recently posted…Listen to Your Mother… that’s me!
That little girl of yours is my hero. All she has been through at her age – she is beyond amazing & you are your husband have to be 2 of the strongest parents ever <3
Thank you so much, Robin. She’s quite the warrior!
martinkadelux recently posted…Listen to Your Mother… that’s me!
She will most likely not remember the pain and you should not be ashamed in the least. You did what had to be done for her better health.
I know I did… I just wish I hadn’t denied it for so long.
martinkadelux recently posted…Listen to Your Mother… that’s me!
What a brave and tough girl. Hugs to the whole family.
Nolie recently posted…5 Tips to Minimize Morning Mayhem ~ Homemaker Monday
<3
martinkadelux recently posted…Listen to Your Mother… that’s me!
The next 5 weeks will go by quickly. I look forward to hearing an update!
It’s going way too fast!
martinkadelux recently posted…Listen to Your Mother… that’s me!
So much for a little one to go through. I can only hope my girls grow up to have that kind of strength.
Scott recently posted…Munchkin Monday: Hisss Game Review
I feel very blessed that she’s so much stronger than me!
martinkadelux recently posted…Listen to Your Mother… that’s me!
Little Addie is so adorable!! I am so glad that she recovered from her procedure. She is sooooooooooooooo cute!! Seriously, too cute and precious!!!
Amy D recently posted…Chipotle Steak Fajitas Featuring Tastefully Simple Chipotle Beer Marinade Mix
She’s doing so well now. I’m so thankful.
martinkadelux recently posted…Listen to Your Mother… that’s me!
She so brave and strong. Hoping the next 5 weeks are calm before baby comes!
kristin recently posted…Plan Your Trip To The San Diego Zoo With Undercover Tourist
Me too, Kristin!
martinkadelux recently posted…Listen to Your Mother… that’s me!
Your family is so strong. I can understand the struggle of determining what to and what not to share. My daughter has a genetic disorder and I have often wondered exactly what I should post about it. I think it’s great that you share to help others who may follow in your footsteps.
I hope I’m walking the right line, for sure.
martinkadelux recently posted…Listen to Your Mother… that’s me!
What a journey this has been. I have been reading about her journey for awhile, so glad to see her smiling in that picture, that melted my heart too!! She is one strong little girl, who has great parents showing her the love and strength she needs!!!
Kelsey Apley recently posted…Walgreens Matchup 8/17-8/30 – TONS of hot deals!
Thank you for saying that. We are truly blessed to have such a warrior girl!
martinkadelux recently posted…Listen to Your Mother… that’s me!
Oh my goodness, what a brave mommy and daddy you both are! I can’t imagine watching my little guy go through something like that – heart breaking! Wishing the whole family the best!
Meagan recently posted…5 Fun Celebration Lunch Ideas for Kids
Thank you for your well wishes, Meagan!
martinkadelux recently posted…Listen to Your Mother… that’s me!
What a sweet girl you have. She’s lucky to have such loving parents. That photo of her standing in her hospital gown, too cute. Sending your family warm wishes and prayers.
Janel (A Mom’s Take) recently posted…Sustainability During the School Year
Thank you, Janel!
martinkadelux recently posted…Listen to Your Mother… that’s me!
Oh my goodness… I have been following your journey for some time and am just in awe of your little girl. She is so strong and has gone through so much, yet every photo shows a little girl full of life and personality. Here is to a few more weeks till baby two and hopefully some rest for y’all
Thank you, Shauna. She’s doing so much better now… only a few more weeks to go (hoping the are as boring as possible!)
martinkadelux recently posted…Listen to Your Mother… that’s me!
oh my goodness–what a brave Mama you are–thank you for sharing such a personal story day by day with your readers. You daughter is beautiful beyond words.
one of my very best BFF’s has a daughter that has dwarfism as well-so I am very familiar with the surgery, thankfully she is bright and thriving 16 year old now doing everything a typical 16 year old does including bugging her parents. You have a long road ahead-but I hope that these types of hardships quickly become distant memories and you enjoy all the other milestones ahead!
Kathleen Kennedy-Leon recently posted…MyBestofBothWorlds wrote a new post, Hampton Inn Voorhees Travel Review
Thank YOU for sharing, Kathleen! It’s scary when it’s happening, but to see how much better she is already (with climbing and holding her head), is truly amazing!
martinkadelux recently posted…Listen to Your Mother… that’s me!
Hugs to you and your family.
Dee @ Cocktails with Mom recently posted…WWE Monday Night Raw: A Family Night Out #WWEMOMS
Thank you , Dee.
martinkadelux recently posted…Listen to Your Mother… that’s me!
I am so glad that everything went well for the surgery itself. The hospital is the worst place to have to be with a young one. I am glad you made it through that and are able to be home and relax more.
Stefany recently posted…It’s a new school year and I have 2 attending!
So true! Being home is the best medicine for us right now!
martinkadelux recently posted…Listen to Your Mother… that’s me!
My thoughts are always with you. You and your family face such adversity with determination and a positive spirit. Good luck!
Jennifer recently posted…Tapeworm and Other Gross Things That Affect Your Dog
Thank you, Jennifer!
martinkadelux recently posted…Listen to Your Mother… that’s me!
Addie is so adorable. I’m always so eager to read your posts. You and your family are so strong. You face your challenges with a spirit that most wouldn’t be able to muster.
Dawn recently posted…5 Simple Tips for Better Skin (Giveaway)
Thank you, Dawn. Addie is the one holding us up sometimes. Of that I am sure.
martinkadelux recently posted…Listen to Your Mother… that’s me!
She is such a strong, brave and resilient girl! I’m glad she is doing better now and you did this before the baby came. Good luck with everything! Let me know if you need help. I’m not too far away!
Kristin Wheeler (@MamaLuvsBooks) recently posted…Delicious HARVESTLAND® Chicken with Mango Salsa
Thank you, mama. She’s so much better already- I am so relieved.
martinkadelux recently posted…Listen to Your Mother… that’s me!
YEAH! praise God that everything went well! Thank for sharing her update and progress!
Thank you for following <3
martinkadelux recently posted…Listen to Your Mother… that’s me!
Hugs to you and your family. And man, is A’s smile something else! Pure beauty.
Lisa recently posted…Tips to Prepare for Back To School + DIY Lunch Box Notes
It’s her spirit shining through 🙂
martinkadelux recently posted…Listen to Your Mother… that’s me!
Wow, what an adorable little girl, how could your heart not melt with that smile. It’s amazing how resilient kids can be when they have strong Momma’s like you!
It really is amazing! She’s doing so much better already!
martinkadelux recently posted…Listen to Your Mother… that’s me!
Thank you for sharing your story. I also have had to sit and wait while my little girl was in surgery on multiple occasions. It is the worst feeling in the world seeing them in pain and not able to take the pain away. I hope the rest of your journey is a smooth one.
Thank you, Ann. It is horrible, but I am so glad that this summer of surgeries is over!
martinkadelux recently posted…Listen to Your Mother… that’s me!
I cried reading this because I could feel your mommy fear through your words. You are both so strong!! Glad she is recovering now and home.
Emily recently posted…Health Benefits of Pumpkin Seeds
Thank you, Emily. She’s doing so well now.
martinkadelux recently posted…Listen to Your Mother… that’s me!
I think it is great that you are so strong and so is Addie. Luckily she has a mom like you on her team with her every step of the way. Glad to hear that her surgery went well.
Stefani Tolson recently posted…Teenage Mutant Ninja Turtle Cupcakes #TMNT
She is the one strong for me… I don’t know how she does it.
martinkadelux recently posted…Listen to Your Mother… that’s me!
I cannot even imagine what your family has been through. Thank you for sharing your story. May God Bless you and your sweet daughter in the days ahead.
Lori recently posted…The LeapPad3 is New and Mom and Kid Approved
Thank you, Lori!
martinkadelux recently posted…Listen to Your Mother… that’s me!
That smile! So beautiful.
I’m not going to pretend to know or understand what your going through, but I can only imagine if my daughter had to be in the hospital. Such a roller coaster of emotions. Thank you for sharing your story and please keep us updated. xx
Nicole recently posted…Swimmers take your mark
Thank you so much, Nicole. <3
martinkadelux recently posted…Listen to Your Mother… that’s me!
So many worries and emotions going into and through this. I’m really happy that all went well and when she gave you that smile, I know that must have been like angels singing. Woohoo for being on the other side of that surgery!
Liz Mays recently posted…Fiber Choice 30-Day Get Picky Challenge
It really was- that’s a great way to describe it!
martinkadelux recently posted…Listen to Your Mother… that’s me!
what a crazy could of days. her smile can melt a million hearts. prayers that everything starts going well.
She’s already doing so much better!
martinkadelux recently posted…Listen to Your Mother… that’s me!
Oh, Chelley, becoming a mom has turned me into complete mush. I couldn’t get through this without tears streaming down my face, imagining how hard it was for you to feel helpless during and around Addie’s surgery. You are so brave, such an inspiration, and such an incredible mom. And Addie… what can I say? She is one amazing girl. Love to you both, and of course your incredible husband! xxoo
Jane – Mom Generations recently posted…Summer Trampoline Safety
Oh love- you’re the sweetest <3 Love you lots- thank you for all your thoughts and love!
martinkadelux recently posted…Listen to Your Mother… that’s me!
She’s such a little trooper! Glad you didn’t go into labor early from the worry, I know how stressful the waiting can be.
valmg @ Mom Knows It All recently posted…WW – Up Close With A Butterfly
Right?! Waiting is so hard!
martinkadelux recently posted…Listen to Your Mother… that’s me!
I can’t thank you enough for this post!
We are weeks away from our 11.5 month old son, Roan’s decompression surgery and I have been struggling. To read your story has given me a sense of hope and a certain peace with the tremendously difficult path before us.
Thank you,
Bettyann Gibson
Pigeon Lake, Alberta, Canada
Bettyann, I am so glad to hear that! Decompression is scary, but there is so much hope and such good that comes from it! We will be thinking of you! <3
Thank you for sharing so openly, though Lorelei doesn’t have achondroplasia I really love reading your blog and experiences with Addie (and Millie too) we had our first Hasbro admission this week and for a much less intense reason, I can relate to the fear. Also reading this, made me think how important it is to keep all her paperwork from all her doctors in a file I can keep with me, guess I should work on that.
Any admission is scary! I do hope everything is ok!!! Sending our love to you!
Chelley @ A is for Adelaide recently posted…Asking for a friend: Achondroplasia, This is a safe space
Thank you for sharing so openly, though Lorelei doesn’t have achondroplasia I really love reading your blog and experiences with Addie (and Millie too) we had our first Hasbro admission this week and for a much less intense reason, I can relate to the fear. Also reading this, made me think how important it is to keep all her paperwork from all her doctors in a file I can keep with me, guess I should work on that.