*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.

*there's a first Mother's Day!

But first, a recap of the week:
After surviving the flood, we almost didn't survive the week. Will was crying a LOT. After several calls to the cardiology office we finally ended up at the pediatrician's office. It was the last stop before the E.R. The pediatrician couldn't find a reason for Will to be so upset so she sent us on to the E.R. It was our 3rd trip. We could have gone straight there, but I tried to avoid it. Although we haven't had a bad experience in the E.R., it is still a stressful place that I would rather avoid. Our cardiologist was on the floor in the hospital this week so we couldn't see him during office hours. But by going to the E.R. we were able to eventually see him there. It was finally decided that Will was having trouble weaning off the pain medication. So we were given something to taper off of at home. That helped tremendously and I was finally able to get through a day without having to hold, rock, bounce and shush him for hours. It was a relief to see him feeling more like himself. Even after returning home I made more phone calls to doctors over the next couple of days to get the dosages adjusted. Tonight is the last dose!

Then Friday morning was our follow up appointment with the cardiac surgeon. An X-ray did not show any fluid around his heart, his oxygen saturation was good, and there was no sign of infection! It was a very quick appointment. The surgeon was pleased and allowed me to shake his hand to thank him for mending Will's little heart. I'm sure we aren't the first family to wish we could more adequately thank him for his skill and knowledge. I don't think that is possible so I just said something like "Thank you so much. We're really grateful." He didn't seem to expect anything else. It was just another day at work for him! He did say we could begin to decrease the amount of Lasix we give him to help with fluid retention. And now that he doesn't need medicine for pain several times a day the number of syringes we use daily has decreased significantly! In hindsight, I wish I had asked for more details about the surgery, but I was too excited because he gave some promising news about Will not need his feeding tube much longer.

Friday when we got home, I abandoned Will's feeding routine to see how much he would eat by mouth. It went well! He ate a little...but not enough. By that night we returned to the usual schedule. I was afraid he would get dehydrated and 1) did not want another E.R. visit, nor 2) did I want to put him through the ordeal of getting an I.V. to get fluids to rehydrate him. Will's body and I.V.s do not have a good history. I thought it was just him, but someone in the E.R. commented that heart babies tend to have that kind of trouble. I will call the nutritionist tomorrow morning to get started on a new feeding plan. My personal goal is for us to no longer need the NG tube by June 1st. Cross your fingers for us!

Now for our Mother's Day. We had a plan to get up and drive to the lake to to eat lunch with my parents. But Chris discovered that our kitchen sink faucet was leaking badly. It was decided that he would try to fix it himself and if it was done in one hour we would all go to the lake as planned. He did an awesome job and the new faucet works perfectly! But just as he finished that project we discovered (unrelated) sewer problems. This required a call to professionals. Knowing that their arrival might be unpredictable, the work might be expensive, and the whole ordeal just plain unpleasant, I decided to take Will to the lake for the visit and Chris graciously agreed to stay home and take care of the house. Will was a good little traveler and I was happy to have a little road trip. We missed Chris so much...but considering the stressful situation at home we all ended up happier that we weren't stuck at home wishing all 3 of us were somewhere else.  

Although it was a crazy, hectic week at times, another reason I haven't posted any updates is because we misplaced our camera's battery charger. I found it today - at the cabin at the lake - so more pictures will be coming soon!

So that was our first Mother's day. I guess it was fitting that it was just like everything about motherhood so far - completely unpredictable.  :)

*there's his first natural disaster

We survived the flood! There was devastation in all directions of us but we were spared. One street away there are houses full of water and about 35,000 homes have been without electricity. We could have been trapped in our neighborhood or have required rescuing by boat. 

Below is the inside of the Opryland Hotel. It is about 10 minutes from our house. There is a little river inside the hotel where you can ride a boat, but these are not of that river.

 

 Downtown and various other Nashville spots

  Ghost Ballet sculpture collapsed into the Cumberland River

 Interstate 24

 

 Riverfront became part of the river

 

 

 

We are truly fine and life returned to normal for us when Chris went to work this morning. Amazingly our only inconvenience is that we were asked to conserve water and only use it for baths and drinking. Also we suddenly have ants in our kitchen. I just wanted to keep a record of this for our memories. I can't even begin to think about how I would have gotten everything we needed out for Will. I'm glad we didn't have a reason to go to Children's Hospital. It would have been difficult if not impossible to get there. Also it had some flooding so they would have had difficulty helping us I'm afraid. Thank you God for allowing us to stay safe in our home.

Thinking of everyone who experienced damage and loss. If you are reading and we can help please let us know. If you live nearby and want to volunteer for the clean-up effort go here.

*there's a strong Will

And he's SIX months old today!