Thursday, February 13, 2014

Throwback Thursday

I came across this picture a few months ago, my dad took it on Christmas day 2 years ago when we were still clueless as to what was causing my baby girl so much pain.  My mom brought Christmas cookies for Junebug and I, she hadn't been interested in eating in a few weeks so to see her so excited about eating cookies made my heart a little lighter that day.
 

Last week I went back to the same hospital where this picture was taken to visit a sweet little boy who was having some serious issues. The same hospital where my twin sister, Lindsey, works as a nurse.  We spent about a week there while doctors speculated as to what Junebug might have, they tried a few treatments unsuccessfully and were humble enough to admit she needed to go somewhere for more specialized care.  A few people remembered Amelia and I, I think mostly because of my connection with Lindsey but it was sweet that they mentioned remembering our stay. 

It was a bit of an emotional flashback to be there.  The smell of disinfectant; seeing the tubes, wires, and meds; listening to the beeps of monitors and alarms; remembering how exhausting it was caring for a child in the hospital.  I found myself checking stats on his monitor and looking at the entry points of his IV's just like I would if he were Mia.  I wanted to pick him up, rock him, and try to make it better. 

I was reminded of all the songs that I sang to Mia over the many weeks we were in-patient. One of my favorites is "Can I Stay" by Ray LaMontagne. 

Can I stay here with you
Till the morning?
I am so far from home
And I feel a little stoned
Can I stay here with you
Till the morning?
There's nothing I want more
Than to wake up on your floor

Ever since my experience with Junebug I've felt that working with in-patient children and their families has been a calling of mine, so many nurses and child life workers have touched my heart I would love to do the same.  With 3 children under 6 I may have to wait a few more years for a career change though.  I envy my sister so much for being able to positively impact so many lives every day that she works. 

I can't believe it's been 7 months since our last medication, I feel so blessed that she is thriving and doing well. I don't find myself thinking about her health much at all anymore, my anxiety about it is very infrequent and even when I feel panic setting in I am able to remind myself of how well she's doing and I can usually talk myself out of it.  I feel like July will be here before I know it and we will be celebrating one year medication free.  I know I've said it a hundred times but I just can't believe how far we've come, I feel like the luckiest Mama in the world having her here with me and as healthy as she is.



Tuesday, December 31, 2013

REMISSION!!!!

Friday we had a rheumy appointment and we've officially been classified as being in unmedicated remission!!!!  I wasn't expecting this until next month, I thought that the timeline was the same as medicated remission, 6 months after stopping a medication.  More good news is she's nearing 30 pounds and is in the 50th percentile for her weight and we don't have to go back to see the rheumy for 6 months! 

This was by far my favorite Christmas present this year :) Luckily my family was still here visiting to share the joyful day with us. We ate JuneBugs favorite dinner, had a princess tea party with our friends, and ate lots of Christmas cookies and candy and just enjoyed the moment. 

Cookies for Santa!
I'm still trying to process the news, it's a lot to take in for this Mama.  I've always described her as "medically complicated" given everything that she's gone through, and now she's just Mia, a stubborn and snotty 2 and a half year old. I no longer have to explain why she's tiny and needs supplements, why her skin is covered in pink splotches, why we have to bring a med bag wherever we go, I don't have to plan outings and weekends around a medication schedule, I don't have to deal with the eye rolling from the people at the ER when I bring her in for "just a fever", I don't have to ask new friends if their children are vaccinated before she can be around them. 

It's like a whole new beginning, we can just be us.  A Mama and her 3 amazing babes. I feel like I can breath again.

Of course I have to remind myself that she can flare again but there is also the possibility that she may not.  Regardless, we will celebrate every day with kisses, hugs, cookies, and endless amounts of love just as we have since JuneBug first came home from the hospital.

I will continue to post updates, they may not be as frequent as before, but not having a lot of updates is a good thing.  It means she's growing and learning like every other child, and without pain or medications.  And after writing this blog biweekly for 2 years, it will be nice to take a break and not think about past challenges or setbacks or speculate about the future.  Maybe I will squeeze in a monthly wordless Wednesday with pictures of my beautiful girl :) Either way we will update on all our fun and adventures!



Friday, December 20, 2013

2 Years Post Diagnosis

It's hard to believe that it's already been 2 years since our diagnosis.  This time 2 years ago we were admitted to the hospital in our home town to treat what we thought was a case of pneumonia. 

Little did we know we would be bounced around to 3 different hospitals over the course of 3 weeks, we would be diagnosed and treated for Kawasaki disease, we would spend her first Christmas in the hospital, we would have a bone marrow biopsy to rule out cancer and HLH, we would have a terrifying night where Mia's body temp plummeted to 92 degrees and we thought we were losing her, we would discover that the case of pneumonia was really the disease attacking her organs. 

I think about that night her temperature dropped and it still makes my heart ache.  We had finished the bone marrow biopsy earlier in the day, my dad had left the hospital for the night and June and I were settling down when I noticed she was lethargic.  I felt her head and she was ice cold, I yelled for the nurse who came in and then called for the attending.  They took her into a procedure room across the hallway and had to do a lumbar puncture unsedated, my nurse who had been done with her shift for an hour already sat in our room and cried along with me while we listened to Mia crying out.  She stayed there with me until they brought her back, by this time it was around 2:00 am. We wrapped her in electric blankets and I climbed into the crib to hold her while she slept and sing her our favorite songs.  I had no idea what tomorrow would bring, I was scared the doctors would come and tell me there was nothing more they could do, they couldn't treat when they didn't know what was wrong.

It was one of the most terrifying nights of my life.  In typical Mia fashion she bounced back the next day, you would have never been able to tell something was wrong.  I'm guessing that the temperature dropping was a side effect of the anesthesia used during the biopsy, but at the time all I knew was that she had some kind of undiagnosed illness, she had been sick for 2 months, and this could be her body shutting down.  Three days later we were being discharged with a diagnosis and a treatment plan.  The nurse who stayed with me that night was coming in for her shift as we were leaving and she hugged us and cried, she was worried about Mia all weekend and couldn't believe how well she looked and that we were going home.


JuneBug 1 month post diagnosis, still not feeling the best but happy to be home.
Junebug has been pain free for over a year and a half and we rarely see her rash anymore. It still blows my mind how far we've come, it's like nothing ever happened. The only traces of anything are a few scars on her chest and neck from where they placed central lines.

We are so fortunate to have her feeling well.  So many kids with this disease struggle for years, in constant pain every day.  I know parents who are considering risky bone marrow transplants because they can't find anything to relieve their children's pain, parents who have to face hip and knee replacements for their 7 year olds because this disease has damaged their little bodies so badly in such a short amount of time.  We are just so fortunate JuneBug is on her way to remission, she seems to be one of the few lucky ones. 

This time next month I'm hoping to write a post about remission!  stay tuned :)

Monday, December 16, 2013

Jingle Bell Run 2013!

Thanks to all who supported our team this year!
 
Mia loved our sugar plum costumes!
We had a blast despite it being FREEZING COLD!  We raised $235.00 for the Arthritis Foundation bringing our total funds raised for research to $2,450.00 in only 1 year!!!!!  Thank you to my friends, family, and co-workers for donating! 
 
Junebug is still doing fantastic, we have our checkup next Friday and I'm hoping after this we can stretch our appointments out to every 6 months.  As much as I love seeing Dr. S. it would be nice not to have to take that long drive until it's warm out again.  Wish us luck!

Monday, November 25, 2013

Thankful

We have a lot to be thankful for this year.  Amelia has successfully weaned from all medications and we’ve been discharged from cardiology. It's been well over a year since our last heart episode, 1 year since her last dose of steroids and 4 months since her last dose of chemo.  She’s all caught up on her vaccines, I don’t have to be terrified of the chicken pox any longer. 

It’s pretty crazy to think that she’s just like every other toddler on the playground.  Her entire first year of life I mentally prepared myself for having a disabled child either from the after effects of meningitis or the JIA and here she is……. absolutely perfect. 

I know that JIA could cripple her in the future, it makes me all the more thankful for every day she can dance, jump, and run around like a toddler should.  I’m thankful that I no longer have to give her shots, even though it was always harder on me than it was on her. 

I’m so very thankful for everyone that reads this blog who cheers out loud when Mia accomplishes something.  Seriously you guys, when I get an email from someone I don’t even know, who lives thousands of miles away, who is ecstatic that Junebug is doing so well it makes my day.  I love, love, LOVE that I can share our joy with all of you.  All the good vibes you send us DO make a difference, so thank you from the bottom of my heart.  I don't know how I would have gotten through the last 2 years without having this blog to pour my heart out when I needed it most. 

I am so blessed in so many ways.  I have a job that I love, a warm house, food on the table, amazing friends and family, and 3 of the most amazing children ever put on this earth.  It blows my mind when I think about how lucky I am.  Every time I look at those 3 little faces I'm overwhelmed with the feeling that I am so lucky that I was chosen to be their Mama. 

And finally I'm thankful for Junebug, and not just because she survived and is here with me, but thankful for all that she's taught me over the last 2 and half years.  She's taught me a lot about myself, to never take a day on this earth for granted, and what's most important in life. 

June and her BFF "Pink Kitty"

It's been almost 2 years since our last extended stay in Madison Children's but I still think about the families I've connected with.  The Mama's who would never stop fighting for their kids, the endless walking up and down the halls to comfort our sick little ones, the look of exhaustion on all of our faces after a sleepless night, but we were still all determined to get one thing, to get our kids well.  I feel confident that I can finally say that we've accomplished that.  Mia is healthy, happy, and of course loved. 

And for that I will forever be thankful.

 

Friday, November 8, 2013

To Arthur On Your 2nd Birthday

You can read last years letter to Arthur here


Dear Arthur,

It’s been 2 years since you came into our lives.  Last year I told you we were going to kick your ass, AND WE DID. 

Suck it. 

 

Mia’s Mama


Don't be fooled by her sweet smile, this girl is a bad ass.
 

Monday, October 14, 2013

Thoughts on Motherhood

My journey into motherhood has been far from perfect.

When I was pregnant with my first I had it all planned out.  I was going to have a quick labor and delivery and my son would come out and immediately latch and things would be perfect, the room would be filled with joy and love. 

My labor was long and difficult, when he came out I immediately noticed that he was different.  I saw his crooked little foot and I yelled “he’s perfect!”.  I don’t know if I was saying it for my own benefit or others around me but I wanted to vocalize that despite his difference I loved him and thought he was in fact, perfect.  The room was quiet and people were whispering, thinking that I hadn’t yet seen that my son was going to be different from all the other babies in the nursery.   I just wanted everyone to leave so I could hold him and tell him that everything would be alright, Mama would fix it and make it better. 

Leif Alan
When I was pregnant with the twins I knew better than to make a plan, I wanted a natural birth but I knew that if a c-section was what I needed to safely bring my babies into the world then so be it.  I knew I probably wouldn’t carry them to term and they would probably spend time in the NICU, I knew that they may have difficulties latching on, I knew to expect the unexpected.  At 34 weeks we decided c-section would be best, baby B (Erik) was breech and it wasn’t a sure thing he would turn after baby A (JuneBug) came out.  At 36 weeks labor came naturally and I was in surgery within 2 hours, the babies were healthy but still considered preemies so they stayed in the NICU.  When I was finally able to make my way up there they were so beautiful, they both latched perfectly and had a strong grip.  We took them home and despite the major lack of sleep I was elated to be a mother again.  Then at 6 weeks old my world came crashing down when Amelia fell ill. 
Erik Timothy

Amelia June
 
The first week in PICU at Madison the respiratory therapist told me “God doesn’t give you more than you can handle”.  She knew that Amelia’s fate was still uncertain, but what she didn’t know was that I already had a child with a medical history and that my heart was aching for the newborn I had to leave behind.  How much more could I take??  All I wanted was that perfect vision of motherhood that I dreamt about, I wanted to show my baby off and glow with pride, I wanted to spend my maternity leave bonding with all of my children, I wanted to feel overwhelmed with love, not fear and uncertainty.    

It’s two years later and looking at my family you would never be able to tell how imperfect our journey has been.  Leif can run, jump, kick, and play and Amelia is on her way to remission.  I can finally take a breath and enjoy every aspect of motherhood without worrying about procedures, therapies, or medication.    

You never know how strong you are until you have to be.  Honestly, I hope I never have to be that strong again but I’m thankful to know I have it in me.  I think that my journey has been perfectly imperfect, it was difficult but it’s made me a better person.  I cherish every single day with my children, I live to make them happy and feel loved.  I have an empathy for people that I don’t think I would have had my life been picture perfect.  I care so deeply about people that I’ve never met, I read other Mama's blogs who have children struggling and I just want to hug them and say “I know how you feel, you can do this, you are strong”.  I cry when they cry and I celebrate when they celebrate. 

I'm so grateful for every experience that I've had, however imperfect it may have seemed at the time.