*there's a long awaited visit!

Today was an extra big day in Will's life. The Nashville Chapter of the Baby Will Fan Club (also known as the Niarhos Family) convened for a meeting WITH HIM at HIS HOUSE! Finally!!

Ellen, Mary Fares, & George with Will

These guys were extra excited to meet Will. They have been following his blog and hearing updates on him from their mom since he was born. Despite living really close to the hospital where he spent so much time they haven't been able to visit. Since Will has primarily been an intensive care patient his visitors could only be adults. He was, however, able to get the pictures and cards and crafts they sent! Today he was finally able to receive them in person!

Cards and art from Mary Fares

We will be getting years of fun out of these extra precious finger puppets!

Adorable stuffed animal additions to Will's room:

Will truly enjoyed getting entertained by these three! I don't have any pictures of Ellen's jig dancing, but that proved to be a big hit with getting smiles out of Will.

I am the former babysitter of these kids since the oldest was about 3 and the youngest wasn't even born yet! She is now 10! (The same age as Katie.)

Each of them got a chance to help feed Will. From loading the feeding bag and pushing buttons on the pump...to helping check his NG tube placement with a stethoscope...everyone was a big help.

The gang plus mom Frances helping Will sit on the couch.

Notice how George has one hand behind him. Katie is now an extra big fan of him because he supplied some much needed petting. She even showed him the spot on the couch where she wanted him to sit to provide the best petting situation for herself.

It was an extra fun afternoon of gift getting, dog petting, jig dancing, snack eating, picture taking, reminiscing, and feeding pump teaching! As I write this Will is conked out...happily napping after all the fun!

If you noticed that the word "extra" was used a lot in this post, it is because it has been one of Ellen's favorite words (such as: "If you get the honey mustard with the chicken tenders at J. Alexander's it makes it EXTRA yummy"). When I'm around her I tend to use it extra often. 

*there's a feeding explanation

Here is an explanation about Will's feeding. I share this partly in case others want to understand but also because we're going to want to read this one day to see how far we've come.

To summarize: Will has oral aversion. This means he associates swallowing with negative stimuli. A severe oral aversion can sometimes mean that they won't allow anything to touch their face or enter their mouth and they could cry at the sight of food or a bottle. Will's is not that severe. He will take a pacifier when he is tired, he puts his hands and toys in his mouth, and he will also swallow some of his medicine. In the past if I let him get really, really hungry he would nurse and take small amounts. And when he has gone awhile without eating (after surgery for example) he will forget that it used to hurt when he ate from a bottle so he will eat a little. Until his reflux reminds him that it hurts to swallow. Also Will hasn't experienced hunger much and he doesn't realize that he needs to keep eating to fill his stomach. I don't think he understands hunger or that he has the power and responsibility to make it stop by eating. 

As much as we wish we could just pull his feeding tube out and let him try to figure out eating on his own, we have seen it won't work. We did some trials of things here at home and he just didn't eat enough. If we continued to do that for a day or two Will would become dehydrated. When one is dehydrated they are given an I.V. of fluids. Watching Will get an I.V. is very hard. [I think heart babies tend to have this problem. It's as if he feels the pain of the needle stick and clamps down (so to speak); his blood vessels tighten and the needle can't go in. That's my unscientific description, but I have seen nurses repeatedly try and inevitably I.V. specialists are called in to help. Once I saw the night shift give up on trying to get an I.V. in him so they let the day shift try. When those day shift nurses and specialist tried I heard them say "We'll just let the night shift try". In the meantime he has been poked over and over unsuccessfully and is miserable so I won't be responsible for him having to get an I.V. because I didn't feed him enough.]

 First attempt with cereal. 

It's also important to note that Will is at the bottom of the growth chart. This is expected since he weighed 2 lbs when he was born, but going long periods of time with small amounts of food just isn't a good idea. [The growth chart is the thing that tells you when your child is in the 50th percentile in height, the 75th percentile in head circumference, etc. When you do really poorly on the growth chart you are diagnosed with failure to thrive. Will doesn't have that and we plan to keep it that way.] A baby in Will's situation is at risk for falling off the growth chart altogether. Will isn't in danger of this happening, but his weight gain is only as good as it is because of the amount of calories we put in him every day. If we change that he won't do as well. I am certain that when Will is 2 his size will be at least average, but it just doesn't make sense to not do what we can to help him grow. Withholding food sounds like a good way to get him to eat by himself, but trust me when I say we have seen that it won't work. It would work for you and I, but not for a baby that doesn't understand hunger.

Will had several factors that made it likely that he would develop an oral aversion. 

1) Babies with congenital heart defects often have feeding problems.

2) Prolonged nasogastric feeding (his NG tube) - Will has been fed this way for about 6 months out of his 7 month life.

3) Repeated unpleasant mouth experiences - tape being torn off the skin on his cheeks (ouch!), being intubated with the ventilator tube, gloved fingers checking out his mouth, etc.

4) Reflux - I swallow, food goes in, because of reflux it comes back up my esophagus and burns...I may be little but I know how to make that stop...I just won't swallow again.

 More info on his feeding to come soon.

Note to self: 

don't try to feed the baby and take pictures at the same time

Dog update: As of two weeks ago Katie is now officially jealous of Will. She is demanding that we pet her constantly. She is shamelessly crawling into the laps of strangers requiring that they pet her. But conversely instead of ignoring him like she has all the time, she is actually showing some interest in him. She will snuggle up next to me while he is in my lap. I think when he kicks his foot and it brushes against the fur on her back she feels that suffices as him petting her.

Katie decided the Boppy pillow was the perfect napping spot!

*there's the father of the year!

"It is not flesh and blood but the heart which makes us fathers." 

Friedrich von Schiller 

Will is such a lucky boy. He has a father with a huge heart. I sometimes look at Will and ask him, "How did we score such a good Daddy for you?"

Visiting Daddy at work on Friday before a weekend at the lake:

Enjoying himself on Kentucky Lake this weekend:

Chris has had a very busy and stressful start to fatherhood. Here's to easier and happier times ahead!

*there's a little pro...

at rolling over! I prepared myself that we wouldn't see the rolling over again for awhile. But today Will rolled over again for me during the day and twice for Chris while I was at work this evening! He's a pro!

Also, he has sadly had his first mosquito bite. :( I don't think it bothers him but it bothers us! I was walking around the yard with him last night and after coming back in the house I realized one was on his forehead. It was so big, its legs and wings compared to the size of Will's eyelashes. And those of you that have admired Will's eyelashes know that made for a large mosquito!

 

This picture was taken on 5/28/10 of Will as he was discovering how cool it is to play with his feet!

*there's another first!

Thursday, June 3rd Will rolled over for the first time! 

He was so proud of himself:

It was very much like the reverse of a turtle on its back scenario - Will was on his stomach and was so mad he couldn't wait to get to his back. That seemed to make his accomplishment even sweeter. 

*there's a busy busy busy family

Typed on May 26th, photos added June 14th and July 20th.

We've moved! We are surprisingly settled in our new house already. Even though most of the furniture is in place, this week has been a mess of trying to find soap and sheets and "I think we left that at the old house". It's a happy kind of mess because we love being here. It's a great neighborhood and we cannot wait to start visiting all the restaurants nearby.

Mommy and Will saying goodbye to his first home!

 

And hello to the new one!

 

Looking into Will's room from the hall.

In the middle of this we've still been investigating Will's feeding difficulties. He was evaluated by a speech language pathologist and the news wasn't what I wanted to hear. Based on what she saw, he has an oral aversion and won't be able to get enough nutrition by mouth for awhile. So we're stuck with the tube. I may have mentioned long ago that since he was in the NICU that a G tube is an option for him. I don't know much about them yet but will probably be able to write chapters about them in a few months. Getting a G tube requires surgery which we logically have wanted to avoid. Also the cardiologist requested we wait until after the OHS because the sites are so close to each other there is an increased risk of infection.

Since initially we expected him to have his current NG tube only a couple of weeks, we didn't expect to be at this point having to make this decision. Everyone wanted to wait and see what happened after surgery - we are under the impression that lots of times babies go home with an NG tube but pick up eating quickly after repair. After all, they are feeling better! But unfortunately during all this waiting Will has started to associate sucking and swallowing with unpleasant things. It is baffling to us that he will eat normally once and then not do so again for days. He can nurse for 20 minutes, but when it's time for him to be hungry again he doesn't want to nurse again. Or take a bottle. Or sometimes even let you touch a syringe to the outside of his mouth. So we're going to be doing some feeding therapy and in the meantime work on getting a G tube. Even though feeding him, especially away from home, will continue to be a big pain I feel certain we will be relieved to have the NG tube out of his nose and off his face. It will be a beautiful sight to just see his face the way we have wanted to see it all this time. There is much more to say about oral aversion and I'm sure I will be writing about it for weeks to come. Often I plan to give better descriptions of things here on Will's blog and I end up forgetting or getting to busy to go back and do so. This should be consuming us for awhile though so I'm sure the topic will be revisited.

 This is what I think of bottles! Yuk!

 Thanks to Claire and Morgan for sharing one of their precious high chairs with Will!

On the 25th we saw the cardiologist. First Will got an X ray and an EKG (I wish I could take pictures of the EKG- it's kind of neat. They use these little sticky things on his chest and clip wires to them...like a combination of tiny medical post-it notes and about ten baby jumper cables. He gets upset when they pull the stickers off - it probably hurts. Maybe if he keeps getting them when he's older he can explain it to us.). The doctor said that each year our visit will alternate having an echo one year and a heart X ray the next.

We both wear a bracelet every time he gets an X ray.

Will's incision looks really good despite us being a little freaked out about his stitches. At each end of the incision site there have been these tiny scabs. Except that we realized the other day that the scabs are actually thread. The bottom has a loop of white thread and the top has some white thread and a short piece of clear thread that is sticking straight out. We didn't know we would ever see those so it took us by surprise. The nurse said sometimes they just work their way out. The scar still looks good though and as long as there is no sign of infection we won't be worried. It's just a little weird. The excellent way they had him all sealed up helped us not have to think about what it looked like underneath.

I learned something new at this appointment. We've been hearing all along that he will need to take antibiotics before every visit to the dentist. This is to prevent getting an infection from the dental procedures that could affect his heart and cause damage. When I asked about it today the doctor said that won't apply to Will! He said that the guidelines have changed and it is only true for about 6 months after surgery. Will won't be seeing a dentist any time in the next 6 months! I know it's probably not a big deal to most people to hear something minor like this. But since so many things about taking care of Will are so complicated...each week without a trip to a doctor and each time we can eliminate a pill makes it seem like a small weight has been lifted from our troubles.

 More to come!

*there's seven months!

Will is 7 months old today!


I can't believe I'm not able to show a picture of him today for this milestone. We've moved and the camera is right here but we don't know where to find the cables to upload photos onto our computer. Chris just said "I definitely remember packing them in a box". Which box and where that box is located is another story!

Thank you so much to those of you that continue to check in on Will. There is always something to talk about but not always time to get it typed up. First there was the move. Then his feeding schedule has been moved around which gives us less time with free hands. Then the air conditioning went out in our new house *twice*. (Don't worry, it is under warranty and with windows open and fans blowing it hasn't been too unbearably hot.) As you can see updating a blog has been moved to the bottom of the to-do list.

He is doing well. I hope to resume my blogging routine as soon as possible. Thanks again loyal Will fans...

Edited to add photos on 6/14/10!

 Enjoying the Exersaucer

 

He is getting to be a big boy, but not too big to be swaddled. Wrapping up his arms is like turning on his sleep switch! We leave his legs hanging out now, but this blanket had a message worth sharing...

*there's a mother's perspective

I found this on blog4chd.com. It’s written by Stephanie Husted, a fellow heart mom.

A Mother’s Perspective

You passed me in the shopping mall…
(You read my faded tee)
You tapped me on the shoulder…
Then asked…”What’s a CHD?”

I could quote terminology…
There’s stats that I could give…
But I would rather share with you…
A mother’s perspective.

What is it like to have a child with a CHD?

It’s Lasix, aspirin, Captopril…
It’s wondering…Lord what’s your will?…
It’s monitors and oxygen tanks…
It’s a constant reminder to always give thanks…

It’s feeding tubes, calories, needed weight gain…
It’s the drama of eating…and yes it’s insane!
It’s the first time I held him…(I’d waited so long)
It’s knowing that I need to help him grow strong…

It’s making a hospital home for awhile…
It’s seeing my reward in every smile.
It’s checking his sats as the feeding pump’s beeping…
It’s knowing that there is just no time for sleeping…

It’s caths, x-rays and boo boos to kiss…
It’s normalcy I sometimes miss…
It’s asking do his nails look blue?
It’s cringing inside at what he’s been through.

It’s dozens of calls to his pediatrician…
(She knows me by name…I’m a mom on a mission)
It’s winters homebound…and hand sanitizer…
It’s knowing this journey has made me much wiser.

It’s watching him sleeping…
his breathing is steady…
It’s surgery day and I’ll never be ready.
It’s handing him over…( I’m still not prepared…)

It’s knowing that his heart must be repaired…
It’s waiting for news on that long stressful day…
It’s …praying…it’s hoping…that he’ll be okay.
It’s the wonderful friends with whom I’ve connected…

It’s the bond that we share…it was so unexpected…
It’s that long faded scar down my child’s small chest…
It’s touching it gently and knowing we’re blessed…
It’s watching him chasing a small butterfly…

It’s the moment I realized I’ve stopped asking why?
It’s the snowflakes that fall on a cold winter’s day…
(They remind me of those who aren’t with us today)
It’s a brave little boy who loved Thomas the train…

Or a special heart bear…or a frog in the rain….
It’s the need to remember we’re all in this plight….
It’s their lives that remind us we still need to fight!
It’s in pushing ahead amidst every sorrow…
It is finding the strength to have hope for tomorrow.

Except for personally knowing someone who hasn't survived a CHD, the heart catheterizations (we know a 3 yr old who has had about ten of them though!), and Will not being big enough to chase butterflies - this is pretty accurate. Because of TOF we always looked to see if his lips were blue, not his nails. We haven't had those exact medications either. Otherwise I find it amazing how similar our experiences are with others. We ALL have these feeding troubles!

We are so very lucky. This could have been so much worse.

*there's tummy time

Thanks so much for continuing to check the blog for Will news! We have hit a bump with his feeding progress so that has consumed our week. Also, I don't think I've shared here that the Dianna family is moving! So in the middle of all of this we have been packing! We are very excited. This is our last weekend in Will's first home.

This week was Will's NICU follow up appointment. I guess that means he's been home for 3 months now! His development is what they would expect for a 29 weeker at 6 months actual age. They were impressed with his neck strength and head control...especially considering he was in the hospital for almost 2 weeks and did a lot of lying around. He will have a 6 month NICU follow up, and I think two more at 9 and 12 months.

Yesterday was our first post surgery attempt at tummy time. He doesn't like it very much but did enjoy watching his toy for a little while. He can hold his head up better than this pictures shows. After awhile he starts to slide down and rests his chin between his hands.

*there's a laugher

Will is officially laughing! Such a sweet sound.

Sleeping right after coming home from the hospital.

Will in one of my favorite outfits:

His hair is pretty cute, huh?

This little toy makes several baby noises. One of them is a kissing sound..."mah!". Every time we hear that one I make it kiss him on the cheek. I love this picture because it looks like he's leaning in for the kiss!

Someone needs to teach me how to use my camera so I can actually catch smiles and laughter on film!

A common sight lately...he has found his tongue.