*there's care for caregivers

The name of the game is taking care of yourself, because you're going to live long enough to wish you had. ~Grace Mirabella 

When we truly care for ourselves, it becomes possible to care far more profoundly about other people. The more alert and sensitive we are to our own needs, the more loving and generous we can be toward others. ~Eda LeShan 

If you think taking care of yourself is selfish, change your mind. If you don't, you're simply ducking your responsibilities. ~Ann Richards

I'm a social worker. It is a field with a high level of burn-out. I have spent a lot of time studying compassion fatigue, vicarious trauma, and self care for caregivers to prevent my own burn-out. These tips aren't just for parents of kids with medical challenges but ANY caregiver. I list these as a reminder for myself, but also share them with any other parents:

Hopeful Parents
Special Moms Heal
Hope on Hope
the assertiveness ladder to decrease stress with communication
the Five Good Minutes book series
Married with Special Needs Children article about communicating with your spouse based on the book by that title
Self Care Strategies found on this page

Connecting:
Parents Helping Parents
The Family Cafe - annual conference connecting families in the U.S.
The Father's Network
Exceptional Family TV - weekly episodes about families like you
Special Needs Moms Like Me
Parenting Special Needs - emagazine


Planning and Record Keeping:
Care Notebook for Parents
Special Care Organizational Record (SCOR) for Children (and another for Adults)
Planning for the Future of a Special Needs Child from caregiver.com

*there's Nurses Week!

I wonder how many nurses we have met since Will was born? I have no actual idea, but I bet the number pushes 50 or 60. I am grateful for the decisions each of them made for him, however small or large. An Open Thank You Letter from another mom says it better than I could.

*there's check ups and growth

Will's 18 month well check was today. I suspected he had gained significant weight lately...over the past two weeks he has suddenly seemed really heavy. The scale confirmed - Will has finally left the less than 3rd percentile in weight AND height! His weight is now in the 3rd percentile and his height is in the 4th! So he didn't leave that area by much...but it is so nice to see the dots that are plotted on the graph actually land closer to the desired area!

The big surprise at the appointment is that Will has his first ear infection. I was hoping he would be magically exempt from regular illnesses like those. :) Also, he has been on a daily antibiotic for months to prevent infections...ear infections must be the exception. I'm sorry that he hasn't been feeling great. At the same time we are relieved to know what was wrong because he had a really tough time sleeping last night.

Last week was his hearing follow-up. Will has always passed the hearing screenings but he has several risk factors that could affect his hearing so he is monitored every 6-12 months. This is the first time there has ever been less than perfect results. We have to return in a few weeks for a recheck...the audiologist believes that the left ear could have some fluid left from a recent cold. Ironically, the left ear looked fine today but the right ear was infected! We will also return to the pediatrician after a round of antibiotics to make sure the infection is gone.

So this month's tally: audiologist check up, audiologist follow up, pediatrician check up, pediatrician follow up, a surgery, and a surgery follow up 10 days later. After that Will won't need to be seen again by a doctor (cross your fingers) until he turns TWO in November! Can it be?? Six appointments in one month and then NO appointments for SIX months?!?! I hope I didn't jinx it!

* there's fun outside

Will enjoying the nice weather by playing outside. 

He loves being outside!

Almost eating the Easter window clings.

bunny shaped sidewalk chalk from "Aunt" Christy

Showing off his art skills.

I had a great 2nd Mother's Day! I got to go canoeing!

*there's that tube

In February when I was writing about Congenital Heart Defect Awareness Week there were families celebrating Feeding Tube Awareness Week. I don't know why it surprised me to learn that there was such a thing. I have mixed feelings about the tube so I guess people like me are the reason there needs to be an awareness week. My avoidance of talking about Will's tube has probably kept everyone from understanding what it has been like for us. I'm glad there are people that celebrate their lives with feeding tubes but I haven't been able to do much of that yet.

Here is some of my frustration: it is one thing to be born with a medical diagnosis, but a feeding tube is something that doctors decide to do. It is a solution to a problem. Don't get me wrong, it was the right decision for Will. My problem is that when the original problem is solved we are left to figure out what to do. On paper it looks like we have all the help we need:
a surgeon
the nurses in the surgery office
a pediatrician
a few visits from a home health nurse
a gastroenterologist
a nutritionist
and a speech-language pathologist for feeding therapy.
We have had those typical resources plus a home health company for monthly supply delivery and a long time friend of mine/SLP that will answer my questions any time (thanks Jill). But the effectiveness of this "looks good on paper" help is all over the map. And unfortunately Jill can't move in with us and take care of this for us.

My reality has been many, many phone calls and appointments. But despite all of this constant communication I still feel lost most of the time. I remember asking Will's pediatrician, "Who is in charge of his feeding tube?" I think it is sad that I even needed to ask that question. We were at home with a baby and very little instructions and we were wondering who was supposed to be helping us? The answer was even worse: "I think you and I are." Although we know a lot now, at the time we was not qualified to be in charge of that tube. And although we get an enormous amount of attention from the pediatrician she lacks the specific experience of the daily ins and outs...so basically she and I are Will's feeding tube triage service. We are obviously getting it done in our own time but I don't think this is good enough. For example, I once had a question about how to keep Will from getting tangled in the tubing while sleeping. Our solution? Ask another parent. Where did I find most of the parents with this knowledge? The internet. Do you see what I mean now? My help is coming from untrained (however experienced) strangers on the internet?? I will be forever grateful to those that have reached out to help me. And I am happy to do the same for others in our situation, but with all due respect to them and myself - there has got to be a better way!

There seems to be a new awareness with parents that the long term developmental affects of tube feeding and the lack of solid solutions for feeding tube dependency aren't getting enough attention. Again, the doctors are doing the right thing because they are keeping kids alive with these tubes. But once the kids are ready for oral feeding like Will, it doesn't seem like sufficient support is out there. I don't know what sufficient support is but for starters, a better answer to the "Who is in charge of his feeding tube?" question would help. In the meantime, the phone calls and appointments will continue and I'll keep utilizing these families with experience.

I've seen that many people in the middle of living with temporary tube feedings are struggling and frustrated with how to care for their child. (I say temporary because I believe we would settle into this life much differently if we knew it was permanent.) One huge obstacle is that every child is different and the best way to help them is almost impossible to predict. But there also seems to be a gap in the medical field. A team approach is good, but it seems to me that one key person is missing. I don't know what we would call them, and I'm guessing a new advanced degree program of some sort would need to be invented to create them. Then the insurance companies would have to agree to pay for them. Maybe I'm wrong and the current system is as good as it will get. But I still believe it could be better.

There is good news. This situation is looking up for Will. He will eat. Just not as soon as I wish.

I have added a link under the title of this site for feeding tube and therapy information. I complied the list with permission from other bloggers that have also done their own gathering of resources. Through this chain I hope someone finds something that will make their experience at least a little bit easier.

If you don't have a feeding tube in your life and want to understand it better there is a website I recommend: www.feedingtubeawareness.com. Go straight to the For Friends and Family page and read the whole page. Feeding Tube Awareness also has a great Facebook page. Many other parents there (from all over the world as a matter of fact) have said they also felt they were sent home with these tubes without a clear vision of how it will end. Or even what daily life will be like. Traci, the creator of the site, does a great job of collecting videos and experiences to share and has created what I think is the #1 place for filling the basic information and support gap.

*there's the storm

The winds took off a lot of our roof on Wednesday. We're really happy that no one here was hurt. Other parts of the state and Alabama with actual tornadoes were not so lucky.

 

Our neighbor's swing set used to sit in their backyard.

Since this is on the ground, nothing is covering the venting hole in the roof.

Leaning tree

*there's a count

Number of teeth Will has now = 5

Number of times I have left Will's feeding pump at daycare (on a FRIDAY which means we would have to feed him by syringe all weekend) = 2

Number of times Will's nurses have saved me by arranging to get the pump to us = 2

Number of times Chris found the feeding pump on the side of the interstate at night in the cold (long story) = 1

Number of times we have tried to go out to eat with Will and he vomited everywhere = 1

Number of chicken nuggets Will has stolen from other children = 1

Number of times Will has started to dance spontaneously while eating = countless

Number of times Will has given the food he is supposed to be eating to our dog = countless

I think those numbers sum up our current feeding situation. :)

*Happy Easter!

2011 Easter Egg Hunt at daycare

I'm guessing this is as close as he got to the Easter Bunny.

More pictures to come...

*there's his surgiversary

Or is it his heartaversary?

I think every day is a heartaversary so we will go with the other name.

Sometimes I write blog posts ahead of time and save them to publish later. I wrote one for Will's surgiversary months ago that sounded fairly sad. I think some grief is to be expected. But it hit me one day that this was a time to celebrate!

So then what? A party wasn't really practical. But we COULD share a yummy dessert with some friends! Taking full advantage of an excuse to eat something really bad for me, I became pretty obsessed with the idea of getting heart shaped red velvet whoopie pies. (Still a genius idea if you ask me.) But that proved to be too difficult since our local bakery had never heard of them. I'm keeping that as a goal for the future.

image of ingeniousness courtesy of cambrookefoods.com

We ended up with these delicious cuties:

 

 

Now for the original post.
This time last year we were taking videos of Will in his hospital room. Just in case it was our last time with him. Hoping for the best and preparing for the worst.

 

When surgery was over, we didn't want people gawking at pictures of Will not looking his best. If it is possible to look perfect and awful at the same time, he did. I asked other heart moms if they showed anyone pictures of their child after surgery. I got all kinds of responses: some never did, some did but people got upset with them, and some didn't think it was a big deal at all. Now that we know he is all fixed up, it seems like the time to share our pictures. Don't look at them if you prefer.

 

A few days after surgery (minus some tubes) when the fluid was at its worst.

I hope that comparing those pictures with the one below will help us remember that there is hope when life seems bleak.

Will at age 1

I don't get queasy in hospitals and I can usually handle medical stuff. We were shown pictures of what to expect right after surgery. I think that helped it not be such a shock.When we got to see him after surgery in his PCCU room, the nurse explained all of the equipment and medicines and I was fine until she said "This is the chest tube" and my eyes followed it to the floor. Chest tubes drain excess fluid out of the body. It went from the middle of his tummy all the way to the floor into a box to measure what collects there. At that point my knees got weak and I had to sit down. I've never experienced anything like that before or since. It wasn't because it was gross, but I think it must have been a symbol of how fragile he was. It didn't help that my mind magnified it to the point that I was imagining it much larger than its actual size. That tube was my least favorite thing about the PCCU.

Will's surgery day was memorable and life changing. We hope he never has to do that again.

To my son,
I write this as I wonder,
Will you ask someday?
Why do I have this scar mom?
Did God make me this way?
What will happen to me?
What does my future hold?
Will I hold my own children?
Then live until I’m old?
I think about your future,
Imagining what lies ahead,
Perhaps I need to concentrate,
On present things instead.
The present:
Right now you are enjoying life,
A typical mischievous boy,
You make us laugh…yes everyday,
And fill our hearts with joy.
And people often ask me,
So he’s all better right?
His heart is fixed, he seems just fine,
His future’s looking bright.
Yes, “He’s doing well”, I say,
I hope things stay this way,
I still fear for his future,
And every night I pray…
“Give me yet another day,
Keep my child strong,
I do not want to lose him Lord,
Please let his life be long.
Thank you…
Thank you Lord, for showing me,
What just one child can do,
I marvel at his courage,
And the trials he’s been through,
Thanks for your compassion
(And need I say it?…grace)
You’ve led me through each valley,
And you’ve brought me to this place.
A place where I’m not angry,
And it’s easier to see,
That I was not the person,
That you wanted me to be.
Thank you for the trials Lord,
They’ve taught me how to give,
Thank you for my child Lord,
He’s shown me how to live.
Did God make you this way?
I’ve asked myself this question,
A thousand times before,
Then it became a question that,
I just could not ignore.
God, He made you perfect,
Bestowing you with gifts to share,
God made you with his own hands,
Then numbered every hair.
He saw no imperfection,
Or heart…all rearranged,
He saw you…his well loved child,
And then he saw…lives changed.
The future…
The future is no place to live,
And neither is the past,
The present should be cherished,
As it truly goes too fast,
I don’t know what your future holds,
Or what we’ll have to face,
I know who holds us through each storm,
I know we lean on grace.
I know that life’s not always fair,
I know God has a plan,
I know He gives us strength and hope,
I know, he says…”You can”.
I write this as I wonder,
Will you ask me why?
Will you someday understand,
Just why we had to try?
Know, how very much your loved,
(Through every storm and strife)
Know, I wanted you to have,
A chance… to live your life.
~ by Stephanie Husted

One last thing...a major part of Will's OHS was the closing of a hole between two heart chambers. To listen to what a heartbeat with a VSD sounds like before repair, go to this link. Scroll to the bottom and click on Ventricular Septal Defect. Not the typical thump-thump pause thump-thump we're used to is it?

*there's good kidneys

Good news! Will does not have kidney reflux. We spent a whole day at the hospital last week for tests to get that discovery. Will had a urinary tract infection in December and since those are rare in little boys his urologist wanted to make sure it was a fluke and not kidney reflux. He was very patient with the whole day. 

First we played in this garden in a hospital courtyard:

Trying to see the fish.

Finding a secret path.

One of the waiting room toys.

Chris and I were once in this waiting room so long that we both tried playing the game in this car.

Notice the silver pole at the top for hanging I.V. bags. They think of everything at this place.

First there was an ultrasound of his abdomen. I am sorry to say that one of the downsides of Will getting older is that he has seen enough to know that being with doctors sometimes equals pain for him. We had him lie on a bed for the ultrasound and it took him awhile to realize that the ultrasound didn't hurt. When she would start to examine a different spot he would cry again and then realize that it still didn't hurt.

The next test was not nearly as easy. His bladder was filled with dye so a video Xray could be taken of how his kidneys processed the dye. It was really uncomfortable for him but he was really good despite the circumstances. And luckily the staff was all really nice. I have discovered that appointments with offices that haven't seen Will before can be really long. Before they do anything they first have to wade through his plentiful medical records to get his history. Just pulling up his records can take awhile because there is so much information in it their computer suddenly "runs slow". And sometimes they end up calling his other doctors to ask questions. So we had some nice conversation with the Xray technicians and the observing student while the Radiologist and the Fellow (because of course he gets to be a teaching case almost every time) read over his chart.

Since December he has been on a prophylactic dose of antibiotics every day to prevent more infections. I have really not enjoyed adding that to our routine. But we are actually lucky that Will has not had very many long term medicines. Since having a constant antibiotic in your system is incredibly unnatural, we balance it by putting packets of probiotic powder in his nutrition. That seems to help and I actually like giving that to him.

His next urology surgery has been scheduled for mid-May. Wish us luck!