*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!