*there's his first accidental boo-boo

Pre boo-boo

 

Post boo-boo

*there's PT

Out of all the things we do with Will, physical therapy (PT) is probably my favorite. He doesn't have severe developmental delays but I requested an evaluation to see if he could benefit. Since I have the time to work with him so I wanted as much help as possible. Luckily he qualified and it has been a really good experience. The first therapist came to our house weekly for a few weeks. We don't see her anymore because she moved to another state. But we got along well and she taught me several things about what Will does well and what could use improvement.

We've seen our new therapist a few times and she is really great too. We go to her one morning each week. I thought having PT at home was really convenient, but going to the place where the equipment is almost unlimited is much better than convenience. The gym is huge and has other PT sessions going on at the same time. I like that I get to see the style of the other therapists. The only downside is that Will is so observant he wants to watch everyone else rather than his therapist. She works with that though and uses the distractions to her benefit. For example, if she wants him to roll to one side, she faces him so that side is entertaining rather than just looking at her.

Every week when we leave she gives me a list of things to work on with Will for the next week. We're supposed to practice everything 3 times a day. Will has always responded really well to stretches and strength building. Sometimes it only takes a couple of days to see an improvement. This week we are holding toys to his sides to get him to reach across his body in both directions, having him spend time on his knees to build strength in his legs, and enticing him to roll from his back to both sides and stay there to play for a little while.

She also explains why he needs to do things a certain way and in a certain order. Because of the G tube on his stomach she is okay with him skipping the army crawl babies often use before crawling on their hands and knees. Since he doesn't like being on his stomach at all, it takes effort to get him to stay on his hands and knees to build strength in the right places. But in a matter of two weeks he is much more comfortable on his hands and knees and will stay there for longer and longer periods of time.

One of the cutest things Will has done lately is show his desire to move. He gets started but either doesn't know what to do next or is still gaining strength and coordination.

Here is an example. 

I will find him like this and leave him there to see if he figures out what to do next.
Can you tell what toy he was trying to reach? 

It's a pretty big deal that he willingly lets himself get in that position. He hates being on his tummy.

After letting him try on his own for awhile I help him get to this position:

Definitely pre-crawling!

*there's a beautiful summer

The weather here is perfect lately. Sunday we took advantage of it and I brought the camera to show you our favorite place to walk. It is a greenway near our house. You might recall this walk with Will as well as this one. Once again, Will slept through today's walk. I don't mind; I'm just glad to have him outside!

*The WillPower Awards

First, check this out:

Monroe Carell Jr. Children's Hospital at Vanderbilt

#26 of 2010-2011 Top Children's Hospitals in Heart Surgery

#11 of 2010-2011 Top Children's Hospitals in Neonatology

I have been intending to put that info on here for a long time. It inspired these:

The WillPower Awards

Support Division:
Traveled the longest distance to visit Will (Family Category): Nana (PA), Uncle Eric (FL)
Traveled the longest distance to visit Will (Friend Category): Stuart R (GA), Kealie W (MN)
Honorable mention goes to Maggie M (Chattanooga isn't terribly far, but her trip was JUST to see him!)
Most Miles Traveled Total: Grandmother Cheryl
Best Hospital Visitors: Brad and Katy R, Jill C, Mel F
Best Blog Cheerleaders: Deborah H, Jill F, Bethany A, Maggie M, Katy R
Best Food Support (Meal Category): Mel F, Chris' NDC coworkers
Best Food Support (Snack Category): Alice P, Maggie M
Best Encouragement/Informative/I've Been There and You Will Survive Support (NICU Category): Maggie M, Melanie L, Beth W, Jason P, Gracie's parents (I never talked to you - I don't even know your names - but the fact that you were there so long helped us see that we could survive.)
Best Encouragement/Most Informative/So Invested It Helps Me Relax (Heart Category): Chasity C
Best Encouragement/Most Informative/So Invested It Helps Me Relax (Feeding Category): Jill S


Best Supportive Emails/Texts/Phone Calls/Prayers/Visits/Subliminal Love We Could Feel Even When We Didn't Hear From You: (Family)Will's grandparents Beth, Cheryl, Lynn, and Tony, Will's great grandfather Grand Pop, Uncle Matt, cousin Jake, Uncle Eric and Aunt Cookey, Mike and Joan D, Marvin and Cathy T, Carolyn F, Chris O, Jennifer Mc, Elliott C, Hilmar and Karen S, Ann M, Kendra A, Erica K, Rick and Christy R, the Turner clan, Tim and Charlotte H, Terry and Missey H, Nancy J

(Friends) Holly M, , Chip and Jill C, Deborah H, Pat H, Sherry F, Julie H, Julie Beth F, Beth B, Kealie W, Jeramy and Bethany A, Tanya S, Brad and Katy R, Bob and Paula F, Kara S, the whole Riddle clan, the Kent clan, Bon and Debbie H, Dana L, Stuart R, Fredra A, Dana H, Nate and Leslie D, Brian and Alice P, Katie M, Melanie L, Nicole L, Mel F, Amanda V, Courtney W, Cindy H, Noelle T, Gigi P, Ginger P, Bridget H, Jackie V, Anne Marie H, Stephanie D, Heather D, Rob P, Gina P, Jill R, Jerry and Susan D, Todd P, Brian and Lisa S, Josh and Steph T, Ann B, Dianne C, Maribeth G, Shaina F, Jennifer G, Marcia H, Robbie Y, Matt and Staci S, Jenel C, Emily T, Mary Ann B, Leah S, Katie H, Charlie and Liz D, Anna Beth M,  the Niarhos clan, the Garner clan, Jill S, Beth W, Marcy M, Jodie R, Jan W, Erica M, Amy S, Amy P, Brandy C, Ashley T, Marlene C, Laura M, Jill F, Allison C, Lauree S, Lissa P (awesome babysitter!), my former coworkers at Dan Mills Elementary (for starters Juanita, Julia, Monika, Edith, Carletha), Chris' coworkers at NDC - too many of you to name!, blog readers who have never revealed yourself, a lot of people in Reading PA and Trenton TN, and my online groups for moms of newborns, moms of preemies, exclusive pumpers, CHD moms, and TOF moms

I apologize for any names I've missed. I'm sure there are several family and friends of family and friends of friends...

It's true that even when you don't know what to say to someone who was in our position, just saying so is enough. "I don't know what to say" felt just as supportive as all the right words. 


Medical Division
Best Nurse (NICU Category): Derenda H - As close to family as we found. It makes me shudder to think about what it would have been like if you hadn't been there. Your only flaw is that you didn't work 24 hrs a day, every day.
Best Nurse (PCCU Category): Brittany - You were nice AND a skilled nurse - basically perfect! If you hadn't been keeping our son alive I would have been disgusted that someone so beautiful was also so smart AND kind AND dedicated. Sheesh you're annoying!
Best Night Nurse (NICU Category): Melissa - You were with us for months and if you had a bad night we never knew it. When we called to check on Will from home you would always giggle while you pleasantly asked "Can I have your code?" before giving us an update. We knew that meant I know it's you but I'm a rule follower and am protecting your little boy when you're not here so humor me.
Best Night Nurse (Heart Category): Lara - it turned out you were a floater so we never saw you again but you were a beacon of light with your warmth and good care after a couple of less than great experiences.
Favorite Pediatrician: Dr. Mace - who read Will's NICU records daily and has called me unprompted numerous times - more than once on a Saturday - and is patient and thorough. If you have a baby with multiple health concerns she is the one for you.
Honorable Mention NICU Nurses: Millie, Jenny, Kristina, Christina, Candy, Kendra, Ron, Keith, the other male nurse whose name I can't remember (who considered all the "firsts" sacred and would have never put Will in clothes for the first time without me), and the nice nurse who discharged us and tolerated our We don't want to be here, we don't want to get to know you, and WE ARE READY TO GET OUT OF HERE so hurry up and watch us demonstrate CPR on this doll! attitudes, and probably the 30-40 other NICU nurses who helped take care of Will. After Will was a patient on the other floors we figured out that we liked you best because NICU nurses are living their calling and it's clear that is why there are there. All nurses are amazing people, but NICU ones are extra special.
Favorite Lactation Consultant: Carol, who basically told me 25 times that I was doing a good job. Who doesn't want to hear that?
Favorite Cardiologist: Dr. Johns - I knew I liked him when he said he was "partial to boys named William that spent time in the NICU" since his son, now a teenager, was one as well! You agree to answer our worst and best case scenario questions with the entire spectrum of possible outcomes. Not everyone wants to do that but Chris and I found that if we didn't get that information then our imaginations would come up with things that were much worse than the actual possibilities.
Favorite Cardiac Surgeon: Dr. Bichell - You fixed Will's heart. What more is there to say? Chris was watching your hands while you gave us the pre-op talk. He didn't see any shaking so you passed the test. :)
Favorite NICU Attending Doctor: Dr. Prince - You agreed to let Will go home with the NG tube despite that not being common NICU practice, and gave a great description of what to expect. I learned something new every time you came to talk to us. Also you have a good sense of humor, something not always available in hospital doctors. I could have done without those jokes our last day there about keeping him longer, though. :)
Runner Up: Dr. Weitkamp - Because you let us talk you out of an unnecessary reflux surgery :)
Favorite NICU Fellow: Dr. Johnston - I could write a novella about this one. She was in the room when Will was born and had the unfortunate job of delivering all the bad news to us in those first few weeks. She could have easily, but didn't, laugh at me during our first exchange about Will's TOF diagnosis. She gently explained over the phone that Will's last echo showed that he has a heart defect called Tetralogy of Fallot and gave me a brief but perfect explanation for someone in a state of shock. My response...
Me: "Ok, so how do you spell that?"
Her: "t-e-t-r-a-l-o-g-y"
Me: "What about that second word you said?"
Her: "You mean of? o-f"
I was so stunned I thought the whole thing sounded like gibberish and didn't recognize "of"! Lucky for us she was often on call and rotated back onto Will's team again and again before he was discharged. Her knowledge of his medical history along with her good personality and trust that we were good parents helped make the whole experience more bearable.
Favorite Cardiology Fellow: Dr. Soslow - He was consistently on Will's team before and after his OHS, was personable, apologetic for the times we were inconvenienced, and didn't act like we were bothering him when he was on call and we called to ask questions.
Great Medical Team: the Vanderbilt Nurse-Midwives, especially Margaret. They give great personal attention and their office nurse Janette actually answers the phone when you call with a question.
Great Office Staff: The techs and nurses in the outpatient cardiology office. They have fun at work and it shows.
Favorite Hospital Social Worker: Julie Hooper - My standards are high and you get my approval.
Favorite Paramedic: The female one. I don't know her name but out of all the EMTS I met on Tet Spell Day she was the only one that had heard of TOF. Her peppy conversation helped the ambulance ride go by really quickly.
University Pediatrics Nurses That Helped Me Survive The Tet Spell: Patty, Jackie, Linda and Michelle (I don't think they'll ever forget Will - it's not every day that a baby turns blue - and I will never forget them.)

Miscellaneous Division:
Genius Creativity and Inventor of the Where There's a Will blog title: Maggie M
Genius Creativity and Inventor of the WillPower awards title: Katy R (you really didn't think I came up with either of these names by myself did you?)
Best Provider of Original Heartfelt and Often Handmade Gifts: George, Ellen, and Mary Fares N
Honorable Mention goes to: the Sunday school classes and Aunt Linda's white house classes for all the pictures drawn for Will
Saints That Helped Us Pack and Move (We're forever in your debt): Charlie and Liz D, Brian and Alice P, Brad R, Bethany A
Best Hospital System Navigation Assistance: Frances N with Honorable Mention going to your husband Tim and sister Margaret for also answering my questions!
Awesome Sharers of Maternity Clothes: Dana L (holy storage bins!), Tanya S, Jill C, Maribeth G
Best Loaner of Baby Stuff: Jill C
Best Seamstress/Maker of Personalized Clothes: Beth B
Favorite Vandy Cafe Cashier: I'm ashamed that after buying at least 80 bottles of water and 40 large sweet teas from you I never learned your name. There is no excuse for that and I have vowed to learn the names of those that seem to be the little people but are just as important as the big ones in the future. On that note, last month I learned the name of my...
Favorite Valet at University Peds: Balthazar - he is so sweet, remembers us every time, and always asks "How is the baby?". He was very upset the day I got my car back from him only to park it myself and reenter the building since I was leaving with Will in the ambulance. And this month he apologized for not knowing my name. :)

And last but not least, 
Best Baby: Will


This is the only time you will see the WillPower Awards because God willing we will not be having any years in the future that required so much support as this one. 

*there's 10 months!

 I'm sorry to say that these are the best pics I could get to commemorate 10 months. 

And they were taken very close to him turning 11 months. 

Nonetheless, he's cute isn't he?

The latest on Will is that his is "mamamama"-ing and "babababab"-ing all day long. He is such a happy kid. I can't count how many times people have asked "Is he always this good?". He smiles and laughs and claps and is just joyful to be around! We are frequently told "He's so observant" and "He's so laid back". He watches people everything closely and mimics gestures like waving. His fine motor skills have always been his strength. He has been squeezing and patting with his hands and picking up things with the pincher grasp for awhile now. He'll pass toys from one hand to the other and will pull little toys out of his toy bucket over and over and over. He's a good sleeper. So good I don't even want to describe it for fear I will jinx it. He manages changes in his daily routine like its nothing. His favorite thing in the world right now is to put his hands in the running water as it fills up the bathtub. He's the best.

*there's a poem for my son

i carry your heart with me
(i carry it in my heart)
i am never without it
(anywhere i go you go, my dear; and whatever is done by only me is your doing, my darling)

i fear no fate
(for you are my fate, my sweet)
i want no world
(for beautiful you are my world, my true)
and it's you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root
and the bud of the bud
and the sky of the sky of a tree called life;
which grows higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart (i carry it in my heart)

e.e. cummings


This poem likely wasn't meant for a mother to dedicate to her son. But the mention of hearts is fitting I think.

*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