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.


                                                                                                            

Sunday, June 8, 2014

Still in the Top Six!


Mia's Marchers raised just under $10,000, a few hundred shy of our goal. The sun was shining and our hearts were full! The day could not have been more perfect in so many ways and came at a time when Dave and I really needed the support of all of our loved ones. Thank you to all who came and ran, walked and/or donated! We are so proud and grateful.

Proud of our kids
Proud of our 5K Runners

Grateful for our St. Joseph friends
Grateful for Nonno's fun, loving spirit
Grateful for Plank Road teachers, aids and Assistant Principal who have treated the girls as if they were their own!
Grateful for Grammy's unconditional love and enormous hugs

Grateful for friends who have been with us from the beginning, all 6 years, rain or shine!



What I love is witnessing over 6,000 people coming together for a common purpose, paying it forward. No matter what the cause (Autism Up, Tour De Cure, Kidney Foundation, Breast Cancer, Alzheimer Association, The Dream Factory, Camp Good Days and Special Times, Make A Wish, Ronald McDonald House, the list goes on and on), the impact each of us has on someone's life is immeasurable. Thank you for helping us support one of the many organizations that is near and dear to our hearts. We couldn't have the impact we have without all of you.

Saturday, May 10, 2014

Hanging On

An update at this point is confusing to say the least so I will try to simplify! After Mia's water soluble enema and review by a team of doctors, our course of action has changed drastically. To begin with, we will not be admitted tomorrow for the colonic manometry study. Instead, Mia will have a same day procedure in which the doctors will scope her urinary and bowel systems. Because she was born with, what we've come to be known as, a cloaca (essentially one opening for her vagina, anus and urethra) and a single kidney that sits on her bladder, they need to determine what "wiring" is present and where everything leads.

Those tests will give us more pieces to the puzzle, however, each doctor we have spoken with strongly believes Mia will not achieve voluntary continence of her bowels. With the lower portion of her sacrum underdeveloped, the nerves needed to control her bowels are not there or have not properly developed. Therefore, we have begun a bowel management program  which entails giving Mia a daily enema to help her achieve "social continence". The idea is that by flushing her once a day, she will empty once and be free of bowel movements for 24 hours until her next enema is administered. We had our quick instructions and given our medical supplies all in about 1 hour. Our first attempt this morning in the hotel was beyond stressful!

It has also been confirmed that Mia will not be able to urinate in a "normal"way. She has a neurogenic bladder that has left her with a very weak sphincter muscle and a bladder that does not contract as it should. She will need surgery, at some point, to addresses her leaking and then she will need to empty her bladder via a catheter. In order to keep her one kidney healthy, we will need to do necessary surgeries of her bladder. We are told  that a healthy bladder equals a healthy kidney. She will be getting a blood work up to determine the current health of her kidney.

Maybe some of you have given or do give daily enemas. For us and Mia it is new and stressful. Our goal is to get to a point where Mia is not crying and the benefit of not having to wear diapers to school outweighs the uncomfortableness. The whole process takes an hour but if it works it will change Mia's everyday life.

My heart is very heavy. No, this is not the end of the world. Mia has her health which I am so very grateful for! But, if I am being honest, I hate doing this to her everyday even though I know the benefits are immense! With tomorrow being Mother's Day, I am so glad all the kids and my mother are here with me (obviously, my husband too!). I cannot thank my other 3 kids enough for their patience and understanding during our "vacation". They have been wonderful. Obviously, my mother has been our saving grace. As usual, she is here for me/us every step of the way. Fourty-one years later, she is still taking care of me.

On a good note, our camera was found and turned in! And a wonderful friend from AQ suggested a local ice cream place and we all enjoyed a nice afternoon! Thanks

Thursday, May 8, 2014

Quick update from Cincinnati

Our drive to Cincinnati went very smooth. It took 9 1/2 hours with just two stops! Grammy did great...and so did the kids. As soon as we arrived, the kids were ready to go in the pool. Nice start to this long week!



Mia's first appointment with Dr.Kaul (GI) was overwhelming but we expected that.  He is gentle, kind and thorough. We are very impressed and grateful to be in the right place! Upon examining and reviewing Mia's history, his recommendation is that she be seen by the Colorectal and Multidisciplinary Team, thus adding to an already packed week. Thankfully, most of the team has been able to fit us into their schedules last minute. Meeting with this team will give us the whole picture so we are able to make decisions that will not only be good for today but also for Mia's future.

Our appointment with Dr. Kaul was over an hour and a half. As our heads were spinning so was Mia's. She completely melted down and could not stop crying. Of course she didn't understand all of our conversations but she did understand that it all means more doctors invading her personal space and putting her through things she will not like.

After our visit, we went to the zoo with all the kids. It was a nice distraction for all of us! As luck would have it, we lost our video camera while we were there. I turned to Dave and said, "It looks like it is going to just be that kind of week."

Last night, Mia was up most of the night. After our first full day and night, we were not very optimistic for our next, much more strenuous, day. Well, little Miss Mia proved us wrong! As usual, she was so brave. With the help of an outstanding Child Life Specialist, she didn't even shed a tear! We were at the hospital from 9-2:30, went to three different appointments complete with water soluble contrast enema, x-rays and an EKG. Again, we tried to end the day on a positive note. The kids swam in the pool and then we ate at the Riverview Restaurant here at the hotel. It is a revolving restaurant that over looks Cincinnati, Kentucky and the Ohio River.

Tomorrow our appointments begin at 7:40am. Dave and I both agree that it feels like we have already been here a week! Each night we are exhausted from overload of information and high emotions. The real hard part doesn't even begin until Sunday when she will be admitted. We are so glad the whole family is here and so is Mia. I would be remiss if I didn't mention how unbelievably grateful we are to have my mother here with us. She is our angel, taking care of the other three kids back at the hotel so Dave and I can both listen, learn and be there for Mia. We couldn't have done this without her.

That's all for now. I hope to post again soon. Thank you for all your prayers. There is no doubt it is helping us get through!



Monday, April 7, 2014

Don't Miss Out!

Who doesn't want to be a part of this awesome team?


It is that time of year again and we are looking to grow our team. Please consider inviting a new friend to join Mia's Marchers! Follow this link to either join or donate to someone already on the team: http://www.helpmakemiracles.org/index.cfm?fuseaction=donorDrive.team&teamID=23451  To join, click "join this team". To donate to a team member, click on  team member's name and "support me".

The Stroll for Strong will be held May 31st at Genessee Valley Park  at 9am and is so much fun. Last year we had an excellent turnout and raised over $10,000.  We have a slow start this year but our team always pulls through. I would love to match last year's amount or, even better, exceed it. Please help spread the word so we can continue to support a hospital that is near and dear to our hearts and helps so many children  in our community.

We are forever grateful to Mia's medical team and all the wonderful support staff at Golisano Children's Hospital. Not only did they save our angel, they gave us hope and reasons to believe in miracles. So, join our efforts in paying it forward. A Golisano angel might touch your life someday too!