*there's a great check up

Today we went to see Will's cardiologist. Possibly the easiest appointment with a doctor yet. And we left with the best news. We've been waiting to hear that he doesn't have to come back for a year. Last time he said to return in 6 months.

So we check in...

are sent down to the first floor to get a chest X ray...

 go back upstairs to the doctor's office...get a weight and length check...blood pressure taken...ekg..then we wait. The cardiologist said that everything looks and sounds great and we don't have to come back for a year!

We even got to see our old social worker and Will's primary nurse from the NICU. Overall, a good day. I forgot my camera so these were taken with my phone. It's the annual picture with the Circle of Peace Statue!

Deciding what he thinks

Trying to find a spot

 2010, age 3 months

2011, age 15 months

First words report: 

"O?" (for Hello?)

Ow!

Uh Oh!

Ma-ma (only when sick or tired so far)

For the record, he also says Da-da. Just not TO his Da-da yet.

*there's feeding therapy

An update on Will's eating is overdue. Here's the current situation:
*4 daytime feeds that are pumped in over 30 minutes. The volume changes frequently but today it is 130 mls (that's about 4 oz) per meal. I know that is a tiny amount but that is what his little tummy can hold.
*a continuous night feed that runs over 5 hours at 34 mls per hour. That is changing also because we are transitioning to no feed at night. This is probably the most exciting thing I have heard in a very long time! The night feed is not only inconvenient but also not the safest thing in the world. It can come unhooked and pump liquid into the bed with him, the tube can wrap around him, the pump can malfunction...it is just a worrisome event that will be such a relief to not have to do any more!!

Will getting his night feed back in the NG tube days.

*we offer him baby food, finger foods, and/or food from our plates at every meal. Sometimes he likes it but sometimes he doesn't.
*his best oral feeding week was a few months ago. I had stopped offering him anything for several days because it was frustrating me to see him to push that little spoon away EVERY SINGLE TIME. When I offered again (on a Sunday) he ate 7 bites! I stopped then because I didn't want to push my luck and needed to end on a high note. For the rest of that week he ate an average of 7oz of baby food a day! We had to run to the store to stock up! The next week he didn't eat nearly as much and we're still working towards those large amounts again.

 

 

*his phases tend to follow an unofficial weekly pattern. Some weeks he will eat bite after bite. Some weeks he will not let us get a spoon near him. It is really nice when he gets happy and kicks his legs with excitement when he sees me get his food. He doesn't eat much of it but all that matters right now is that he likes it.
*he sometimes will drink water from a sippy cup. We aren't going to try to teach him to drink from a bottle at this age. He has had a few sips of milk, Pediasure, and juice but he really only likes water. The cups we use don't have valves (either a Nuby with slits that open with pressure or a Take and Toss with holes) so the liquid can fall into his mouth easily. This makes me glad that we still haven't found an area rug for our living room...Will likes to use sippy cups like drum mallets and after banging them on a coffee table several times liquid is everywhere.
*this kind of eating means a lot of things get thrown away. Luckily (if its not baby food) we sometimes finish it for him. That can be a problem because if its really good we will eat it all. I'm not buying any more Pirate's Booty or Chester's Puffcorn for this reason. But it was SO GOOD while we had it around.

*his very favorite thing right now is Ritz crackers. He also likes pretzels, Cheese Nips, chocolate graham crackers, Slim Jims, and some other things, but he can't get enough Ritz crackers. Bananas are his go-to baby food.

His feeding therapist says he is doing fantastic because he is progressing in the types of foods he wants. She reminds me over and over that our current goal is for eating to remain pleasurable. We are succeeding if that is the goal. By the time he is ready to be a total mouth eater (a phrase I just made up) he will be comfortable with all types of foods - hard things, things that melt in his mouth, things with little pieces that are more difficult to control in his mouth, etc. When his weight gets to a good place we'll be able to adjust the tube feedings to give him a chance to get hungry.

Tooth update: His first one on top is coming through this week!

If we ever get a picture of the teeth I will be sure to put them here!

*there's Inspiring Hearts

It is hard to find personal stories about adults with CHDs. I am most interested in the ones with TOF of course. I'm happy to share that I found this:

The blog Inspiring Hearts is by an adult with a CHD. She has included interviews with other adults with heart defects, including TOF. If you click this link it will take you to the 3 interviews of adults who have TOF.

Thanks so much for sharing those stories with us, Teri!



From a medical viewpoint, those 'inspiring hearts' are living longer and longer and the medical community is having to catch up. There are many cardiologists for adults with acquired heart diseases, but most that work with congenital heart defects specialize in pediatrics. That means there is a whole new field emerging since these patients did not survive to adulthood in the large numbers they do now. This article addresses this and some other challenges of long term CHD treatment: From 'Blue Babies' to Healthy Adults.


And finally, this blog that I've talked about before did a really nice post on adults with CHDs for CHD Awareness Week. The common theme I noticed was that many of them advise against being overprotective parents. Click here to read what they had to say. Two of the 17 are adults with TOF.

*there's a blog event for Congenital Heart Defect Awareness

Prompted by an invitation from another heart mom who has asked that we write on the topic:

Relationships and the impact that having a child with Congenital Heart Defects has on them.

My response on friends...
Having Will has really highlighted how loved we are by so many. At the same time I have some friends that don't talk to me about Will very much. I don't know if they think I'm being dramatic, if it's too upsetting for them, or if it is some other issue. It hurts but I would rather it be that way than to not have them as a friend at all. I have learned that comments that sound like criticism, judgment, or indifference can actually be coming from a place of love, concern, and fear. But no comments at all just hurts.

Stefanie points out that something like this can actually put an end to a relationship. I think that is so sad. Having a baby go through scary things is enough without having to grieve a lost friend. I guess a friend might not want to bring up Will's health because they think it is better for me. I would prefer they check that out with me before deciding what I need. And if I'm not hearing from them because my life with Will is too much for them, I can't change that. This is our life. Honestly, I can tell I have some friendships that are withering right now. But I'm grateful for the ones that have helped us with our life with Will.

(After finishing this post I heard of this article in the New York Times on the same topic, Coping With Crises Close to Someone Else’s Heart by Harriet Brown. It is about how friends sometimes "stiff-arm" families in the wake of stressors like ours. It points out some reasons that happens and what the families living with the trauma can do too. The part that sounded strangely like what I wrote is where Ms. Brown says: For the most part, we were blessed with support and love...But a couple of friends disappeared...they called once or twice but otherwise behaved as though we had been transported to Mongolia with no telephones or e-mail...I began to wonder what had happened...Maybe we’d somehow offended our friends. Or maybe they were just sick of the disasters that now consumed our lives; just because we were stuck with them didn’t mean our friends had to go there, too...Even if they were completely fed up with us, though, they had to know that my husband and I were going through the toughest year of our lives.)

My response on marriage...
If someone had told Chris and I that this is what parenthood would be like we would have laughed at them. This is the kind of stuff that happens to other people.

We have learned that when something happens that requires us to act quickly- like a violent spit up or a G tube emergency - our fight/flight/freeze reflexes behave in opposite ways. There's nothing wrong with that but it gets frustrating when we can't read each others' minds. Yes, we get irritated with each other and take out stress on the other. Luckily we are both pretty laid back so the rest of the time we enjoy each other.

We do, however, process unknowns in a similar way. Chris and I figured out together that we want explanations for our medical questions as soon as possible. We have wondered and worried about scary situations until we became scared. But when we are presented with facts from professionals it usually turns out that the truth isn't as bad as we would have guessed.

I think being able to watch each other deal with all of this stress changes the way we handle everything else. Things that might have been a big deal just are not. Its not that we're jaded...it's more of a "this isn't that bad because we've seen worse" sort of outlook. Nurses giving him shots, salespeople having him try on shoes, and the barber that cuts his hair all seem to think we are going to be upset with them for upsetting Will. (As long as you aren't cracking his chest open we'll be fine Mr. Shoe Salesman.) The version of us that will handle Will's future are different than the parents we otherwise would have been. We've had a lot of practice praying together and apologizing to each other.


Thanks to Stefanie for inviting us to reflect on this topic. To read the other Every Heart Has a Story stories from other families go to Stefanie's page here.

Congenital Heart Defect Awareness Week 2011

*there's A Day For Hearts

Will's 1st Valentine

Thank you for taking time out of your Valentine's Day to celebrate A Day for Hearts with us!

Our heart baby

Here is a reminder about 2 wonderful, no cost ways to do something in honor of congenital heart defects. One is to donate blood. Every 56 days please. Because of winter storms there is a shortage of over 30,000 units right now. Go here to read why this is important for those with congenital heart defects. If you can't donate consider coordinating a local blood drive. Also make sure to sign your organ donor card (or in TN, the back of your driver's license) and tell your family about your wish to be a donor. The current waiting list for organs is over 100,000.

Congenital Heart Defects Awareness Week 2011

*there's 1 important way you can help

"Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHDs."  

(info by Children’s Heart Foundation)

All this awareness isn't just for fun. Awareness creates funding, and funding creates hope!

In all my looking around, I repeatedly come back to the Children's Heart Foundation as a reputable and productive channel for supporting research for congenital heart defects. Here's why:

*Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research.

*The American Heart Association (although they do a lot of wonderful things) puts only 30 cents of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the 30 cents that goes toward research only 1 cent goes toward pediatric cardiology for CHDs.

*Children's Heart Foundation promises to allocate over 75% of their funds directly to research and research-related education. Go here if you would like to donate.

Get this - in 1896, Sir Stephen Paget of Great Britain predicted that "surgery of the heart has probably reached the limit set by nature to all surgery; no new method and no new discovery can overcome the natural difficulties that attend a wound of the heart".* Was he ever wrong! Without funding for research we wouldn't be where we are today...who knows what else could be accomplished if we could match and surpass the funding of pediatric cancer research.

I could list many, many ways research is important for CHDs but there is one particular reason it is important to me. If Will's valve doesn't hold out he will need more work. The hope is that by the time that happens it can be repaired in the cath lab and not require another open heart surgery. Because cath procedures are less invasive and not as hard on the body, children recover quickly and have very little pain compared to open heart surgery. I would like that perfected ASAP!

*Litwak RS. The growth of cardiac surgery: historical notes. Cardiovascular Clinics 1971;3:5

Congential Heart Defect Awareness Week 2011 

*there's 2 things you can do for your kids

In the spirit of Congenital Heart Defect Awareness Week, I want to make you aware of these two important movements among heart parents.

1. Expectant parents: request a pulse oximetry screening for your newborn. It's an incredibly easy, noninvasive test that will reveal low oxygen saturation. This isn't mandatory but could be very soon in Indiana as well as Tennessee (and probably other states but these are the 2 that I know about). Click here to see the draft of the Indiana Senate bill and click here to see the Tennessee House and Senate version - HB 0373/*SB0065.

Until the pulse ox is made mandatory for newborns the suggestion is this:
Ask for a pulse oximetry screening on your calm baby 24 hours after birth on both an upper and lower extremity.

An oxygen level below 95% indicates further investigation. This doesn't catch all congenital heart defects and a reading below 95% doesn't guarantee there is a CHD either. The point is just to SCREEN.

If the oxygen saturation level is low the second time, an echocardiogram can be performed. This is a sonogram of the heart. And if you're pregnant, you already know that a sonogram is another simple thing that can give you a lot of answers. 

The hope is that doing more of these will prevent sending home babies undiagnosed. If it helps to think about it this way, PKU testing requires 2 heel sticks and it has been part of the mandatory newborn screening for years...despite it being more rare than heart defects. The Tennessee bill noted above has a target date of 1/1/12. If your baby is born sooner than that you have the option of asking for the test. My understanding is that some hospitals do this automatically on all their newborns anyway. Just ask to find out if yours does.

When I say the pulse ox is noninvasive, I mean it doesn't get much easier. Remember me talking about Will's "sats"and this red dot he had to wear on his foot? That is the pulse oximetry monitor. He wore it 24 hours a day in the hospital and still gets his sats checked at every cardiology appointment. Totally painless and simple.

The red dot under the tape with the white cord is the pulse oximetry monitor.

The other warning signs of a possible CHD in a newborn:
rapid breathing
trouble feeding
tiring easily
sweating along the forehead, especially during feeding
dusky color
turning blue


2. Parents of teenagers - consider getting an electrocardiogram for your teen athlete. Parent Heart Watch is a group that is hoping to make electrocardiograms mandatory for student sports physicals. I like this article about it because it explains the pros and cons of screening everyone.

Even if mandatory screenings aren't realistic I think it is nice to know that you can talk to your child's doctor and decide if a voluntary electrocardiogram is right for your child. The Parent Heart Watch website has some other really great information and ideas that could save the lives of young athletes. For example, having more Automated External Defibrillators in public places and training on how to use them. The website is www.parentheartwatch.org.

I hope you feel empowered with this info. It isn't meant to alarm you but can be filed in the "nice to know" part of your brain. If helping others is one of the reasons we were chosen to be Will's parents, then gaining this knowledge and not sharing it would make it all for nothing.

Congenital Heart Defect Awareness Week 2011

*there's 3 strangers who saved my son's life

This one was fun to put together.

Click on their names to read more about them.

1. Mildred Stahlman -Will was born at VUMC which houses a small 16 bed NICU named after this doctor. She developed the first neonatal ventilator without which Will would not have survived. Will has spent about 35 days total on a pediatric ventilator.**

(image courtesy of Vanderbilt Reporter)

2. Martha Lott - the premature infant that was the first to use that ventilator. She grew up and became one of Will's NICU nurses. About 48 years and 1 month after she was born she was assigned to Will for about 3 days. She doesn't wear a button that says "I'm the first ventilator preemie" or anything like that...another nurse told me the story so I looked her up and found these articles. If you click this link you'll find another article about Martha. My favorite part is when Dr. Stahlman says "If she hadn't survived, I would have probably never put another baby on the machine."

Thanks Martha. 

(image courtesy of Vanderbilt Alumni Point of View)

3. David Bichell - Will's heart surgeon. I can't ever come up with much to say about him. Maybe there just aren't words.

(image courtesy of Vanderbilt University Medical Center website)

 **If you have heard me complain about how much I dislike that NICU ventilator, my feelings haven't changed. I was unsettled during every minute of that necessary evil. I can still recall the beeping sound it makes in my head out of nowhere.

Congenital Heart Defect Awareness Week 2011

*there's 4 books on hearts (and a giveaway!)

that I thought you might want to know about and that I want to have.

1. Walk on Water: The Miracle of Saving Children's Lives
by Michael Ruhlman

2. In a Heartbeat: A Baby's Heart, A Surgeon's Hands, A Life of Miracles
by Kimberly Russell

3. King of Hearts: The True Story of the Maverick Who Pioneered Open Heart Surgery
by G. Wayne Miller

4. The Parent's Guide to Children's Congenital Heart Defects
by Gerri Freid Kramer and Shari Maurer

This is part of the list of books on congenital heart defects I would like to collect to donate to a hospital or school or heart family. So far I have these three: 

My Heart vs The Real World

by Max S. Gerber

I think "real" is the best word to describe this book. The photos are really good, but they are also very somber. It's not a book you want to pick up to be inspired about how great a heart child's life can be. It does  convey the hard realities of life with a CHD so be warned that you probably won't feel very cheery after reading.

Before My Heart Stops: A Memoir

by Paul Cardall

I thought this one was good to read whether you are interested in heart defects and organ donation or not. The chapters are partially made up of this survivor's blog during his wait for a heart transplant. I love that it is by an adult. There still is not a lot of information out there from adult survivors' perspectives. Adults with severe congenital heart defects have only begun living to older ages recently since some of the surgical procedures are only around 30 years old. Paul Cardall is beloved and admired in the CHD community and after reading this I understood why.

It's My Heart

(image courtesy of Children's Heart Foundation)

This one has a good overview of all the CHDs and explains them in simple terms. I wish someone would have handed it to me the day Will was diagnosed. Seeing all the information collected into one book like that and knowing that it had been provided to thousands of other families might have helped make it less lonely and scary.

 *****

I saw this on another blog today. I LOVE Etsy and this blogger has this announcement for her shop:

In honor and memory of all the children living and lost from CHD's, bekima knits' helping hearts will be donating 20% off every sale, now thru everyone's 'Heart Day' - February 14th.

Proceeds will go to Children's Heart Foundation and Bless Her Heart.
 

Feel free to copy and paste to help spread the word!

Shop HERE to help hearts...one hat at a time.

If you like that Etsy shop, go here to find the blog that coordinated with bekima knits to have a giveaway today!

Congenital Heart Defect Awareness Week 2011

*there's 5 lessons I've learned

Sometimes I debate with myself about whether or not Will's CHD was something that happened to us or if we were anointed with it as a gift. Here are some of the lessons learned.

1. from Lauren :

"God makes no mistakes."

2. from Kate:

"We serve a mighty God."

3. from Stefanie:
We can all be angels to one another. We can choose to obey the still small stirring within, the little whisper that says, Go. Ask. Reach out. Be an answer to some one's plea. You have a part to play. Have faith. We can decide to risk that He is indeed there, watching, caring, cherishing us as we love and accept love. The world will be a better place for it. And wherever they are, the angels will dance. Joan Wester Anderson

4. a quote by Barbara Bloom
When the Japanese mend broken objects, they fill the cracks with gold. They believe that when something's suffered damage and has a history it becomes more beautiful.

5. a poem by Lauretta P. Burns 
As children bring their broken toys
with tears for us to mend,
I brought my broken dreams to God, 
because He was my friend.
But then, instead of leaving Him,
in peace, to work alone;
I hung around and tried to help,
with ways that were my own.
At last, I snatched them back and cried,
"How can you be so slow?"
"My child," He said,
"What could I do?
You never did let go." 

Congenital Heart Defect Awareness Week 2011

*there's 6 affirmations of faith

I don't talk about faith very publicly. It's very personal to me but I am happy to share these verses that have meant a lot to me since Will was born.

1. in an email from Julie H.:

Don't worry about anything; instead, pray about everything.  Tell God what you need, and thank him for all he has done.  If you do this, you will experience God's peace, which is far more wonderful than the human mind can understand.  His peace will guard your hearts and minds as you live in Christ Jesus. Philippians 4:6-7

2. in an email (and gift!) from Julie Beth F.:

William Matthew Dianna...who is called by my name, whom I created for my glory, whom I formed and made. Isaiah 43:7

3. from Katie M's artwork:
For this child I prayed and the Lord hath given me my petition which I asked of him. 1 Samuel 1:27

4. But He said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. 2 Corinthians 12:9-10

5. And the child grew and became strong; he was filled with wisdom, and the grace of God was upon him. Luke 2:40

6. Have I not commanded you? Be strong and courageous. Do not be terrified; do not be
discouraged, for the Lord your God will be with you wherever you go. Joshua 1:9

Congenital Heart Defect Awareness Week 2011

*there's 7 reasons I am happy to have my CHD child

1. He is SO darn cute!
2. He reminds me that the human body can tolerate unimaginable things.
3. He reminds me to take one day at a time.
4. He reminds me to have faith and be hopeful when things look bleak.
5. Without him, I wouldn't have met so many inspiring people.
6. Without him, I wouldn't remember to be grateful for my health.
7. Without him, I wouldn't be a mother.

Congenital Heart Defect Awareness Week 2011

*there's Congenital Heart Defect Awareness week!

Starting tomorrow, I will be posting daily on 7 different topics related to our experience as a heart family. Several people are doing the same but I stole my format specifically from a theme this site used a couple of years ago called "7 for 7 Blog-a-Thon". Each day from February 7th - 14th the blog had cute topics like:
7 Reasons I Am Happy to Have My CHD Child
7 Ways You Can Help!
7 CHD Faces You Won't Forget

I decided that was too hard, so I am just going to count down from 7. Check back here to see what I came up with!

To perfectly combine today's Super Bowl with the beginning of Congenital Heart Defect Awareness week, please get yourself ready by checking out this article about a little boy with TOF who will star in one of tonight's famous Super Bowl commercials. If you also happen to be a Star Wars fan be sure to watch the commercial - there is a link to the video in the article.

Congenital Heart Defect Awareness Week 2011 

*there's an update

It's time to update you on Will's phobias. I know some of you have been very interested in this one so I need to make a change to the list. It appears that hats aren't a problem for him anymore and will be replaced with vacuums, mops, and brooms. Even when they are not in use.

So we now have:
*anything that cleans floors
 and
 *balloons - This one has not been tested lately. The next time Will encounters a balloon I'll let you know how it goes.

Tooth update: A few days after Tooth 1 appeared Tooth 2 joined it and they both came in together. If I am ever able to get a picture of them I will share it as soon as possible.

Also, join me in wishing Will's dad Chris a Happy 32nd Birthday today!!

*there's American Heart Month 2011

says the President.

The focus of this is more for acquired heart diseases than congenital ones (meaning you are born with it), but hearts are hearts and they are all important.

Please wear red this Friday, February 4th for National Wear Red Day!

Heart disease is the #1 killer of women.