*there's a good report

I just realized I haven't shared about Will's recent follow up with his cardiologist. Surgery was 4 months ago. When we saw this doctor a month after surgery we were expecting him to discontinue the Lasix prescription Will had been taking. This keeps fluid off the heart. Will still has this retracting or pulling around his rib cage when he breathes. It made sense before heart surgery but no one expected it to stick around. It doesn't look bad, it just looks like he is having to work hard to breathe. So instead of stopping the Lasix one month after surgery, the doctor wanted Will to keep taking it and come back to be seen in 3 months. I'm not entirely sure how the medicine is related. It's amazing the things I don't ask when in the midst of information overload.

The appointment went great! His EKG was fine and the doctor was pleased. No more Lasix. But the retracting is still there. I also asked the pediatrician about it. Both doctors have declared that it isn't a problem and Will's history lends itself to this kind of thing. He never had a serious lung diagnosis - I'm guessing they referred to his need for a ventilator in those early days as respiratory distress.

I'm not worried about it. As a matter of fact Chris and I haven't even really talked about it. I've just been thinking about it this morning and am wondering if it will always be there, and if so what it will look like. Will he one day sit with friends around a swimming pool, with his shirt off and the faint reminder of a heart surgery scar...and will it look like he's panting? I'm certain it will be unnoticeable by then but these are the things that go through our minds.

Will's sats were an awesome 99. That was pretty great. The doctor says there are 2 small residual holes in his heart. One between the top chambers and one between the lower. The lower one was left on purpose during surgery. They were closing a larger hole (the VSD or ventricle septal defect) and didn't want to get too close to the heart's electrical system and cause damage. I think he said the top one might close on its own. Even if they both stay the same, they are "trivial" in size. Awesome! So far I think the only thing besides Will's scar that will remind us of his CHD is that he can still turn a little blue when he gets cold. It happened once at the end of a bath but it's pretty preventable.

Speaking of baths, here is Will taking one with his killer whale.

 

Our cardiologist is pretty conservative and he wouldn't promise that Will won't need another heart surgery in 15 years or so. I think some of the other doctors would tell he us that he's in the clear. 

 Sights around the house this week:

I just unpacked this from our move in May.

Inside I found this. I completely forgot about this binder.
Its got all our NICU discharge instructions and lots of info on TOF.

I also don't need all those sheets of paper to describe what TOF actually is anymore. Here is the oversimplified, shortest version that is the easiest to tell: TOF is made up of 4 defects. The most important 2 to mention are that Will's heart had a hole between two chambers that allowed unoxgenated or blue blood to mix with oxgenated red blood. So the blood that was sent from his heart back out to his body didn't have enough oxygen in it. And the ventricle it had to go through was too small. So his heart had a hard time getting blood out and the blood didn't have enough oxygen in it anyway. Hence the term "Blue Baby". And since Will's case was fairly mild he wasn't very blue. How's that for short and simple? I can summarize pretty decently. :)

RECENTLY ADDED:

These are from the super useful site HeartBabyHome! I included their image of a normal heart as well as a heart with TOF. The 4 defects of TOF are in yellow in the lower picture. If nothing else about these pictures makes sense then at least take note of the colors...notice how the top picture has only bright blue and bright red as the background color of the atriums and ventricles. In the TOF picture, the lower chambers (or ventricles) have a purple color. This shows how those 2 different types of blood mix when there is a hole (called a VSD).

The 2 other parts of TOF:

1) when the muscle of the right ventricle becomes too thick (called hypertrophy). This is from working extra hard to get the blood out of the narrow valve.
2) when the aorta is in a slightly different spot. This one has always been more difficult for me to understand because it's hard to depict it in a picture. Here is what the NHLBI says about the overriding aorta in TOF - In a healthy heart, the aorta is attached to the left ventricle. In TOF, the aorta is between the left and right ventricles. This is relevant because it makes it easier for the oxygen-poor blood to get sent back out to the body.
 

*****

I read this blog from time to time. It's a young adult that does a really good job of uniting families affected by CHDs and educating people about what it's like to have one. I think I'm drawn to it because Will can't talk yet and hearing from someone older who has survived something similar is nice. I was really glad I came upon this info about scars. This is the part I want to remember, written by Lauren, the blog's author:

"let your children know that their scars are special badges of honor....Tell them it's ok to show off their scars and share their story. If they don't want to show their scars, let them know that's ok, but also let them know they shouldn't be ashamed of them either. It may take time for them to figure out how they want to deal with their scars, but let them know that whatever they want to do is ok."

I was also glad I read this line from a mom of two heart babies:

"As parents, we have tried to NEVER to comment if scars are showing, so as not to make them self-conscious, or to give them any reason to feel as if they should hide them." 

That is something I could see myself doing without realizing. 

 Here's the last pic from this week.

This is where the pacifiers have been hiding. Under the crib!

 

We have so many because they were thrown away at the hospital any time they fell on the floor. So the nurses told us to take them home and put them in the dishwasher if we wanted. That was really useful until they started to collect in this hiding place!

*there's his first swim

Will's first time swimming in his own little pool!

I know why everyone loves to give clothes as baby gifts. I haven't needed to buy very many clothes for Will yet because everyone is keeping him supplied. I did pick out these little swim trunks though. No, they aren't even necessary because he's wearing a swim diaper and yes, it's just some small squares of fabric stitched together. But they are SO cute!

If you want a closer look at the G tube you can click on pictures to enlarge them. Chris says it looks like the spout used to blow up a raft!

*there's another day in the life of a tube feeding

Here's what it looks like hooked up to the G tube:

The square of gauze is probably temporary. The skin around the tube is continuously trying to heal and might not need anything to absorb excess granulation tissue after awhile. We're told sometimes it's just an ongoing thing that needs padding.

This is what is more commonly seen at feeding time...the extension tube coming out of the bottom of a buttoned onesie...he's less likely to grab it this way:

The bag of milk and the pump on the pole:

This close up is just to show off the new curl over his ear!

There is sometimes a lot of curl on top too. He had a bath not long before this feeding so it has been brushed straight here.

Newest milestone: sitting up to play!

New bib! Thanks to my mother for bringing a smile to our (and his!) face with this:

We are still going to see various doctors but not nearly as often! We recently had Will's NICU follow-up eye appointment. He is a bit farsighted and has a slight astigmatism. Unfortunately we have to go back in one year to check on that. The good news is that there is an 83% chance that it will correct itself! Otherwise he would need glasses. For now we will consider it one more preemie concern checked off the list!

*there's 9 months!

Happy 9 months Will!

Let's see what you've been up to:

Sitting up

 Sucking your fist

Napping

GROWING!

The following were taken by George while Will was enjoying an away-from-home tube meal:

You were very proud to show off how you can touch and grab things with your feet!

Back at home enjoying his new beloved Dragon!

And here is some Will art created by George!

Count Drac-Will-a

Harry Potter

*there's a tooth!

I finally felt it last night. It took both Chris and I and a flashlight to find the little sharp place on his gums to confirm! It is the bottom front one on his left. Getting a picture of it would be nearly impossible, so these will have to suffice:

Doesn't he have the best eyes? And mouth? And cheeks?

Edited to add: 

False alarm. Although the arrival of teeth is still eminent, we can find NO EVIDENCE now of the aforementioned tooth! Maybe it was delirium, maybe his gums decided they wanted it back and grew over it again, maybe it was just a rough spot on my finger...call it what you want but there WILL be a real tooth eventually. Not a shining moment in my career of mothering. It will be forgotten soon. There WILL be a tooth I tell you!

*there's another month of healing

Boo-boos everywhere!

Including another mosquito bite on his cheek:

His new G tube is on the right. It's also sometimes referred to as a Mic-key button. We hook a connector tube to it and then the feeding bags that we've always used attach to the connector tube.

Right now Will has 4 daytime feedings that drip in over the course of a half hour. At night he gets what they call a continuous feed. 30 mls per hour drips in over a span of several hours. That is very slow and keeps him from having large amounts of food in his tummy at any one time. We are in the process of weaning him off of the night feed and back to getting the bulk of his nutrition during the day. Which makes sense because that is when people eat! We hope he can tolerate the change and not spit up too much. 

Thankfully we've had a few home health nurse visits since getting the G tube. We learned how another family created a refrigerating system for the feeding bag with an insulated lunch box. We have LOVED this idea! I had been setting an alarm to get up and put more milk in the bag halfway through the night. Now we can fill the bag entirely and sleep all night like he does! 

 

This is a picture of the projector pictures on the ceiling in his room that we put on while he's falling asleep.

And here is our newest prized possession:

A portrait of Katie by family friend Debbie Patrick. 

It's perfect!

In regular baby news...I think Will is having a growth spurt and is in the very early stages of teething. No drool or sign of a tooth. But his hands are in his mouth constantly, he's grumpy and he is sleeping more than usual. Last night he slept for 11 and a half hours! And had his usual naps in the daytime. One day recently his nap was 2 hours long which is a pretty long nap for Will. As for the teeth, he makes us laugh when he tries to rub his own gums. Rather than moving his arm back and forth he will make a fist and leave it in front of his face. Then he shakes his head really fast! It's funny looking but we love it. 

I'm sure this isn't true, but this feels like the first regular baby news we've ever had about Will. It's completely unrelated to a surgery or a doctor or a problem. Will is fussy. And he's supposed to be! A sign of normal!!

 

Our FIRST family picture!!

This was after our little friend Karsyn's baptism last weekend. 

I have no idea why we waited to long to have a picture made together.

Thanks to Bethany for being our photographer!

*there's a beautiful face!

Will's G tube surgery went "perfectly"! He now has a tube free face!

Napping in the holding area before surgery.

After getting the okay from the surgeon, we took out his NG tube for the last time! We made it ceremonial with pictures and celebrating. A nurse came to check on him and said, "Oh his tube is gone." I told her, "We took it out. It was a BIG deal."

 Daddy removed the tape so quickly he didn't even notice.

What is this thing you keep putting in my face Mommy? I'm going to grab it!

The familiar surgery waiting area. It's pretty empty on a Friday afternoon.

Relaxing afterwards in his room. He found something to grab yet again!

His new G tube is surrounded by tape and gauze right now so I'll post a picture of it once it's healed up. They are sending a nurse to our house tomorrow to help take off the bandages. I can't wait to ask questions about how to use the new tube. We have had a lot of messes during the learning process.

We always chuckle about him being marked as a "Fall Risk" since he can't even walk yet.

Here is a little reflection on how Will's time at the hospital has spanned all the seasons:

 Here was fall:

 

This is summer:

Here was winter:

This is summer:

I just noticed how big it looks from the outside:

The tall portion on the left is the doctor's tower where Will sees the cardiologist, GI doc, and the NICU follow-up clinic.

I was trying to kill time with all of these pictures. My excuse for not having any springtime pictures is because that was when he was there for heart surgery and there was no extra time to kill.
 

Back at home!

Beautiful face.