*there's recovery

Will's surgery went well on Wednesday.
Recovery is easier this time, but still not fun.

Here are some pictures I took with my cellphone while we waited for surgery at the hospital.

He worse his scrubs for the occasion.

Pre-op area Cozy Coupe ride

Next he tried a scooter.

Children's hospitals are truly a different world.
Doctors and nurses apologized to HIM for being in HIS way!

I found an empty hallway for him to roam.

Climbing the crib.

Waiting in the crib.

Laughing at himself while trying to find a way out.

He was a trooper. Very little pain medicine needed. And we learned last time that we can help him feel better by feeding him less for awhile. His GI doctor explained that when you and I don't feel well, we lose our appetites and eat less. Since Will is tube fed we were still putting the same amount as always through his pump and which caused him to spit up a lot after surgery. This time we prevented that by diluting his formula with Pedialyte and giving him less food until he seemed able to handle his usual diet.

*there's another surgery day

I already have several of Stephanie Husted's poems throughout this blog. They are long and probably not interesting to you, but they have been so helpful for me to read. Will is having another surgery tomorrow and although it doesn't have anything to do with his heart, this poem is still appropriate.

If I could write your story son,
(Oh how I wish I could)
I'd pen for you a journey,
That held nothing but good.
Wouldn't it be perfect?
If that job belonged to me?
I think I'd change a thing or two,
While writing your story.
I'd write of lasting happiness,
The storms would stay at bay,
I'd write your story carefully,
I'd have so much to say,
You'd know not of a hospital,
Or days in ICU,
You'd only know of simple things,
Like other children do.
The sun would rise...Yes everyday,
And shine to make you smile,
You'd never know a day of pain,
You'd never face a trial.
You'd dance to music all your own,
While watching Sesame Street,
I'd tuck you into bed each night,
And life would be complete.
I'd write of picnics in the park,
And winters in the snow,
I'd write of laughter, joy and love,
I'd sit and watch you grow.
I'd proofread till my eyes grew tired,
Each line and paragraph,
And let my pen fall to the floor,
Then stop to hear you laugh.
And never would I question,
What sick children must face,
Never would I have a need,
To ask God for his grace.
I'd likely live oblivious,
Of what it means to be...
A member of this "special club",
I call my heart family.
If I could write your journey son,
Perhaps I'd not convey,
The message that HE longs to share,
"We must live for today".
Your story has been written,
Each stroke penned with great care,
He knows each thought I have of you,
He's numbered every hair.
No, I can't write your story,
Although I wish I could,
I must heed what HE says to me,
"All things work for the good".
If I could write the life you'd live,
I'd fail...don't you see?
I'll leave it in much better hands,
He'll write it perfectly.

 by Stephanie Husted  

*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.