Wednesday, February 25, 2015

Keep Those Prayers Coming

Well, I'm not going to lie, today was rough! Mia started the day with a walk and some smiles but ended the day with many tears. I don't have to go into detail for most to imagine how depleted she is right now and how sore her body is from emptying. She keeps asking how long we are going to be here and it's only day 2!

There was a steady stream of doctors from Mia's team that came in throughout the day. We went over everything in detail, signed a dozen consent forms and asked many questions. We know why we are here, we believe we are ultimately making a decision that will improve Mia's quality of life significantly. We have been planning, researching and preparing for almost a year now but tonight, at this very moment, it is so difficult to see that we are doing a good thing.

Unfortunately,  this probably was not the best time to update everyone because I am very emotional, however, it was my only time today. Tomorrow morning they will come to get Mia around 6:30. She will begin getting ready for surgery around 7:30 and then surgery should take place around an hour or so after that. The anticipated length of surgery is 8-14 hours. They will try to update us when possible.

Needless to say, we will need many prayers tomorrow! Thank you for all the prayers thus far. Kim, if you are reading this, I am remembering to "Just Breathe"! Thank you!

Tuesday, February 24, 2015

Still Smilin'


Oh Miama! She is such a tough little girl.  Mia's last solid food was last night around 8:30. Her morning began at 5:45am when we whisked her into "Same Day Surgery". After meeting an entourage of people, she sniffed the "silly stuff" that put her to sleep. She woke with an IV, PICC line and NG tube. Her only protest was a bit of crying upon waking. Once she settled, they brought her up to her room.

All day they have been "cleaning her out", which means nothing to eat accept popsicles, a whole lot of runny poop and stomach cramps. She has barely complained, other than when she had to leave the playroom because poop kept pouring down her legs. She even had enough energy to use her school robot and participate in class for a little while, do a bit of homework, complete some crafts and of course......smile!

As usual, she is everyone's best patient! More of the same for tomorrow. Clean out, clear liquids.

Sunday, February 22, 2015

A Quick Thank You

Tonight our hearts are heavy and full at the same time. With a very busy week of visitors, packing, shopping, cleaning, celebrating Sam's birthday and soaking up family time, I have not been able to send thank you notes to everyone. Please know that we are extremely grateful for the immense amount of love, support and generosity we have have received. I keep saying that, in a lifetime, we cannot pay forward as much as we have received! We will never stop trying but it is quite a task. Thank you for the cards, gifts, gift cards, thoughts, prayers and generous offers of help. One thing is for sure, we are so very blessed!!!! Our hearts and buckets are overflowing as we enter these weeks ahead.Thank you, thank you, thank you!

We will get on the road tomorrow morning and arrive tomorrow night. Mia will be admitted Tuesday morning at 6:30am. I will try to update the blog as often as possible. When we, hopefully, get a spot at the Ronald McDonald House, I will post the address.

Good night and thank you for blessing us in so many ways!
Love, Carleen

Tuesday, February 3, 2015

The Countdown Begins!

February 23rd. Time is moving too fast and too slow.


We have been chipping away at our list: hotel/ Ronald MacDonald House accommodations, work arrangements, tutoring and nursing to name a few. These are the things that leave us wanting more time. Not to mention the 8-14 hour surgery and Mia's long, painful recovery that we are dreading!

On the other hand, looming for almost a year now, is "the big surgery" that we just want behind us. To say we will breathe a sigh of relief when this is all over is an understatement! We are looking forward to the improvements these surgeries will bring to Mia's everyday life. The positive changes cannot come fast enough!

It is becoming increasingly difficult to push the anxiety aside. Since her actual "birth" day, this will be the biggest surgery Mia has had. It will also be the one that she will have to process the most and will remember the most. It will be the longest our family has been separated and the first time I will miss Samantha's birthday and possibly Nicolas'.

This weekend we will be telling Gabriella and Mia about what lies ahead. Given that next week is the last week before February break, we feel Mia needs time to say goodbye and come to terms with being out of school for close to two months. Thankfully, we have the best team ever at Plank North! They are sending us off to Cincinnati with a Robust Wireless Internet Robot (featured on the Big Bang Theory) that will allow Mia to log into class anytime she is up for it. She can interact with her classmates, teachers, support staff and even her sister! We are still amazed. It will be a blessing to have her connected from so far away.

Gabriella! As much as Mia is going to go through, Gabriella will be going through a lot as well. The girls share a room and do everything together. Gabriella gets upset when Mia misses a day of school. The last time Mia and I went to Cincinnati for a few days, Gabriella cried every night and couldn't sleep. Dave ended up sleeping with her to get her to sleep those nights. This is going to be such a long time for the girls to be apart.

As parents, we worry about all the kids! At the same time, we are so blessed with friends and family who continue to surround us with love and support. We know the prayers and constant support will carry us all through yet another mountain in our journey. We can never "pay forward" as much as our family has received. It is so incredibly overwhelming!

20 days! The countdown has begun!


Saturday, November 29, 2014

Reflection

Six years ago today was one of the most difficult days of our lives. It was the day we left the hospital with our one healthy baby while our other baby remained in the NICU struggling to survive. Since then, the months of November and December bring an immense set of emotions that leave me eternally grateful yet, at the same time, full of sorrow. Mia defied all odds and for that I am forever thankful. But that gratitude is only half of my emotions. The other half is the sorrow I feel for all of Mia's hurdles/realities both past, present and future.

Earlier this week, Mia asked, "Why do I have to have an enema?" I explained that God made her "special" and so her body is different.  In that moment, I found it extremely difficult to hold back my true feelings. I wanted to say, "I am so sorry Mia. I don't know why God made you this way. It's just not fair." Today's question was, "Mom, when I get older like you and daddy, will I still have to have an enema?" I answered yes. "How about when I am a grandma?" Again, I answered yes. Then she said, "But it won't hurt as much, right? Because I'll be older." To that I wanted to say, "Well, no, you will just be used to it by then."

Is it really "special" to have your toileting dependent on catheters, even as a grandma? Is it really "special" to be facing a fourth surgery to improve your toileting? We use the word "special" to sugar coat everything but, the reality is, it sucks! So, as grateful as I am, I am ungrateful for the pain, the uncomfortableness and constant fight Mia has to maintain in her life. I am very aware that she shares this burden with many others who were born with disabilities and chronic health issues. I am also aware that there are many who endure so much more. In fact our dear friend Mason has an even harder fight on a daily basis and the same set of emotions apply when I think of him. I know she is "lucky" in many ways but it is all relative.

We have received our date from Cincinnati. Mia will be admitted February 24th for pic line, feeding tube placement and a two-day bowel prep. Her surgery will be February 26th, Samantha's birthday.As we celebrated the twins' birthday and Thanksgiving this week, I couldn't help but think about what lies ahead for Mia this year, for all of us.

I do have a strong faith and am so glad God chose me to be Mia's mom. Mia is special in so many, many beautiful ways. She is Grammy's angel number 5 and mommy and daddy's hero number 1. I am grateful but, at times, I am also sad.

I should apologize. My intention is not to be negative. We try to always remain positive for Mia, for our family, for ourselves. But the reality is, sometimes life just doesn't seem fair. As Mia's self awareness increases, my ability to shut off my true emotions decreases. I want to tell her that I feel so sorry for what she has to go through and that it's not fair. However, I know pity will not help her. Pity will not help me. So, we will put on our game faces and fight the good fight!

Then I look at these faces and smile! Happy 6th birthday girls!









Thursday, September 25, 2014

Not Much of an Update!

 I have not posted because I was waiting for Cincinnati to give us a date for surgery, however, we continue to wait. Many have asked for updates,  but there really aren't any. We are left with time to over think, worry and dread what lies ahead. 

During our last visit(7 weeks ago), I was told the surgery, involving 3 surgeons, will take 8-14 hours. She will be fed through an N/G tube until she is able to eat enough on her own, which may take several weeks. Mia will be inpatient for 10-14 days and then remain in Cincinnati for an additional 4 weeks, at minimum.  Catheters will remain in place for 12 weeks post op. so if she is able to come back home, she will be coming home with tubes. The gravity of this surgery is daunting but those who have had it say it was the best decision ever!



As we try to wrap our brains around this, Mia's school is doing the same. They are working on the logistics of streaming Mia's class! How lucky are we? The best part is, we have not requested a thing! They continue to be proactive with Mia's needs, independent of direction from us. With about a million loose ends to tie up, it is such a relief to know that the school is helping in any way they can and easing a huge worry for us. Thank you, thank you Plank North!

So, we wait.....and wait.....and wait for what seems like an eternity. When we hear word, we will be sure to post!!!!


Sunday, July 20, 2014

Cincinnati, Take Two



I know many have been waiting for an update since our Cincinnati trip but I felt like my emotions were not in a good place to write effectively. Time has allowed us to process all the information, settle our emotions and get into a new routine.

Upon returning from Cincinnati, we continued to give Mia daily foley catheter enemas. It was extremely rough in the beginning and we just wanted to say forget the whole thing. Thanks to a support group and her doctors, we stuck with it. We are so glad we gave it time because she is now an enema champ! As usual, Mia has risen to her challenge. The best part is she is in big girl undies remains stool free during the day. No more having to be "changed".

With her bowels being managed, our focus is now on Mia's urinary system. She has to wear thick, adult urinary pads due to her constant leakage. Her new medication, Oxybutynin, helps slow her leaking just enough to be able to stay in underwear with a pad. Unable to empty her bladder fully, Mia is now getting urinary tract infections. This is very problematic for her single kidney. That being said, we are headed back to Cincinnati for more procedures and testing of her bladder!

 Mia and I will be flying in on the 30th, staying at the Ronald McDonald House and flying home on the 2nd. We will meet with the urologist and gynocologist while we are there. During our last visit under anesthesia, they discovered Mia's vaginal opening, which was reconstructed when she was four months old, has closed. Yes, this will have to be surgically fixed.

To date, we have been told that most likely Mia will need bladder augmentation (increase the size of the bladder), bladder neck tightening (to prevent leaking), vaginal reconstruction, the M.A.C.E. or Malone procedure (http://www.cincinnatichildrens.org/service/c/colorectal/treatments/appendicostomy/) to manage her bowels and the Mitrofanoff (http://www.aboutkidshealth.ca/en/healthaz/testsandtreatments/procedures/pages/mitrofanoff.aspx) to manage urine. Basically, they will reconstruct and reroute her systems all in one surgery. It cannot be done here in Rochester so we will have to go to Cincinnati. Recovery time is 4-7 weeks.   
      

The big questions, "Is all of  this necessary?" Of course the answer is  both "Yes" and "No" so I will try to simplify. She has to have her vagina repaired, bladder tightened and most likely augmented (we will know more after this visit). Those surgeries are a must and her bladder surgery cannot be put off if we want to keep her kidney healthy. We do not have to do the Malone or Mitrofanoff, however, we feel it will improve her quality of life significantly.

If we do not do the Mitrofanoff for her bladder, she will have to catheterize herself through her urethra to void her urine every 3 hours. Because her bladder does not function properly, she has to empty it using a catheter in order to keep her single kidney healthy. The Mirofanoff will allow her to place a catheter in her abdomen instead of her urethra, therefore making it much easier for her. For her bowels, she can continue to get daily foley catheter enemas but she will always need assistance with her bowels. The Malone will allow her to administer an enema from her abdomen. Again, the goal is that she can eventually do this by herself and not have to rely on someone for toileting needs. Added benefits include her ability to be more like her peers, remain stool free and out of diapers, swim without worries and not smell. She may even be able to go on a play date without one of us! She wants to do big girl stuff like her sister and this can give her that!

We have thought long and hard about this. We feel that if Mia has to have surgery anyway, we should do the whole thing. I belong to a spina bifida group and many have had these procedures. I have yet to read one person who has regretted it. The majority of comments center around how much easier their lives are and wondering why they they waited so long to have it done (comments are from those with spina bifida themselves and those that have children with spina bifida). The older she gets, the harder the surgery and longer the recovery. She is young. School is more manageable in first grade than it is in fourth. Her friends will not really understand at this age and it will just become "normal" for Mia.

This surgery will be a big one but hopefully with a big payoff for Mia! It is not scheduled yet but anticipating it will take place this winter. In the meantime, we will try to prepare ourselves for the difficulty of watching our angel fight, yet again, through a painful reality of her life.