*there's a place for more syringes

Of all the places in the world to get good syringes for tube feeding, I never would have thought to look at the Squirrel Store! We get syringes every month from our home health company and sometimes the pharmacy. But the plungers with rubber tips just don't last very long. So I've learned from other moms that the syringes with O rings instead of rubber tips are more durable and can be found here.


Also, it might interest some parents to know that there is a sort of Special Needs Underground for these things too. It is where families swap medical supplies that they can no longer use and the recipient pays for shipping.

A month's supply of bags for Will's feeding pump.

This on my mind because I recently got a month's worth of Pediasure for Will and soon learned that his team of doctors wanted him to try something else to see if it would help his frequent spitting up. It looks like it's working so we now have a few cases of unneeded Pediasure. We have been the recipients of donated formula in the past so I know exactly where to take ours. But when he's done with tube feeding we will have several things left over that we've received from the home health company that will not allow us to return them. We were told from the start, "If you don't use them, you can't send them back...donate them". I may list the things what we have left over here, but if you need something now here are some places to look:

Oley Foundation - Tools for living better on home IV and tube feedings

Facebook - Medical Supply Exchange

There are similar things in online communities for specific medical conditions, for example:

www.mitoaction.org - scroll down to The Trading Post

www.trachestomy.com - go to their message boards and look for Supply Swap

I hope this helps someone! It has definitely kept me from embarrassing myself at the grocery store. I saw a man buying preemie formula one night and wanted to chase him down to offer him the leftover cans we have at our house. But I knew I could find those cans a home in a way that doesn't scare people. So send me a message of you need any Smiliac NeoSure!

This is one of our syringes full of a homemade formula that I have made for Will a few times.

*there's a sign

I have tried to teach Will sign language for "more" and "all done" for months. It wasn't working so I gave up forgot about it for awhile. Today I showed him the sign for "please" and he used it almost immediately! These pictures aren't of him actually signing "please" but he is sort of celebrating it with silly faces.

 

 

Will actually just used the "please" sign so I would pick him up and put him in my lap while I'm blogging. It's hard to type while he's pressing buttons on the keyboard!

This is a picture of Will in Daddy's Phillies hat. He no longer has a fear of hats and he is really fascinated with this one.

And these are some pictures of Will before his recent haircut. The first pictures above show his new and probably temporary shorter look. His hair was so long and curly it was literally falling in ringlets. You can't see his hair well in these shots because I was really taking a picture of him eating a pickle. But you might get the idea. I miss those curls already. I hope they grow back soon.

*there's a trickster

also known as Mr. Mischievous hanging out with two of his loves

the dishwasher and the bathtub. 

He comes running (actually crawling) when he hears the dishwasher door open.

Trying to touch the water from Daddy's shower.

 And his newest hobby

removing and replacing the muffin tins from the kitchen cabinet.

*there's art with hearts

I love the website Etsy.
I have not always loved the cartoon shape of a heart.

But I found this for sale on Etsy

Your Home Is Where Your Heart Is

and I thought it was cute. You can get one made for yourself of any state, the United States, or another country.

And then I saw this:

and I decided that the heart shape is growing on me. It doesn't look anything like an actual human heart, but a real human heart isn't all that cute. Which is probably the reason someone invented the heart shape we usually see.
Although this one is sweet in a different kind of way:

Just for fun, do an "anatomical heart" search on Etsy. It is amazing that all of those things have been made.
Including these:

Anatomical Sweet Heart Floursack Tea Towels

Who knew this stuff existed?

Back to cute Etsy finds. Here are some good ones:
This bracelet can be found at this Etsy link:

 

 This card can be found at this Etsy link:

This keychain can be found at this Etsy link:

This teether can be found at this Etsy link:

This CHD Awareness charm necklace can be found here:

This heart suture bracelet can be found here:

HeartArt4U and Lucky10 are Etsy stores
with too many heart items to list.

 For Kids

These first two are available in different colors for
boys and girls and come from the StickyGenius shop:

Zipper Heart

I don't think these two were made with 

heart defect kids in mind, but they are just cute!

Super Hero Cutie stamp

You are my hero - boy note card

I have to confess that I don't have new pictures of Will here because I can't find our camera. Tonight at dinner he mouthed a tiny kosher dill pickle for a very long time and then licked a slice of pepperoni a few times before finishing off with his usual Goldfish (Slammin' Sour Cream and Onion flavor) and cornpuff poppers (Kroger brand Extreme Butter flavor). I was really sad that I couldn't record that moment OR the moment when he walked by himself all the way across our kitchen!! I'll do better soon.

Also, if you are an artist there is a great new site that is, in my opinion, a more exclusive, skilled, and upscale version of Etsy. Check out Across the Earth Emporium by Artisans at www.ateea.com to set up a shop.

And I know I said I was going put all the heart posts up in February, but I have found a lot of things I want to share with other heart families so there will be more posts on that soon.

*there's walking!

He's walking!
Pictures or maybe video to come...

*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