Mowing the Lawn in a Pink Diaper

He's a helpful little boy. Often, we catch him saying, "No! Patrick do!" because of course, at 2 years, 10 months, he's more than capable of being, you know, independent, like ALL two year olds! He wants to help, even if the lawnmower really is bigger than he is.



He wants to help, even in the only pink diaper we own, which just so happens to be the most favorite diaper of this little boy. Oh yes, it is! Perhaps we need to own more pink diapers, for Maura of course! He's a helpful little boy, that Patrick Finn!

3 Weeks - Revisiting CHOP Tomorrow

When I was pregnant, I harbored a secret fear in my head. I was convinced that my unborn child would be born with a heart defect. My path had crossed too closely too many others who's little ones had heart problems in recent years, that I was convinced it was a sign from God that I was somehow destined to travel this path as well. It was even reaffirmed recently when Maura received some hand-me-downs from an HLHS baby. Small world, huh? Perhaps it was just God's way of preparing me for a different kind of NICU journey...one that is just as unclear...but thankfully with a happy ending...

We've come a long way...


Maura's rock bottom moment...being intubated for her MRI...something I never shared pictures of here before...

I held my breath at our 20 week ultrasound as I nervously asked what the heart looked like. Everything was fine! I breathed a sigh of relief. I wouldn't get off that easily.

It seems like a blur now. But tomorrow, we walk back in. We go to see Neurology at CHOP. Obviously things have been going really well for us. Maura has been doing spectacular. She is now seizure free for three weeks! Neurology will be thrilled with the news! They told us we could expect her to have seizures when she came home, but we've yet to see them rear their ugly heads. As she grows, and grows out of her dosing on her meds as well, I get nervous from time to time.


Maura Just this weekend...relaxing at home...almost smiling these days...with her glowing blue eyes!

Of course, I have questions for them. What can we expect? What is the next step? How long will she be on meds for? When does she go for testing again? I'm sure some of them will be answered tomorrow, but many will still be a mystery. Perhaps we'll never see a seizure again. And that would be wonderful!

River Stones for the Garden

I don't know what took me so long to actually finish these. I'd collected the stones forever ago, and they just sat around waiting. I actually did three of them last week, but then I left the others until just yesterday and today I added a quick coat of polyurethane to them to keep em nice and shiny in the pots!



I got my inspiration from Kerrie over at Sea Kettle. Last year, she had done this project, and I loved it so much! It fit into my new herb potted extravaganza very well!



Now I won't forget what I've got in there! What do you think? How do you keep track of your gardens?

A Relaxing Moment

Just a moment from our week...one we are savoring! Thanks Amanda for the inspiration, as always! What summer moments do you have to share?

Farmers Market Finds - Sunflowers!

One thing I look forward to each spring is the opening of our local farmers market. It's so much more than the produce and goods available for sale. It's the conversations to be had, the people to see and new faces to meet. It's supporting local business and agriculture and trying new things - from Chorizo to Farm Cheese!



But one thing I really love is the flowers. I feel like I've often got beautiful flowers abound in my house in the summer because of it. I love to bring them home and find places for them. These sunflowers are particularly stunning, don't you agree? In all of their majesty, I often find myself looking at them, trying to figure it all out! They truly are one of the special things about our Farmers Market here in Bordentown! 3

Celebrating Summer - Ice Cream

Happy Solstice to you! I hope your day was magical. I rocked my not so little man to sleep last night as I looked out the window thinking about how the longest day of the year was officially over! So quickly! So it had me thinking...what do we do to celebrate summer?



See this piggy bank? It sits in our dining room. Every time I find change laying around, I put it in this very piggy bank. It weighs quite a bit right now. It's contents? Our ice cream money!



We are lucky enough to live in a town with not one, but TWO ice cream places! Not to mention the other THREE we can ride bikes to! So with the heat sinking in, there is nothing like heading out after dinner with our change purse filled to indulge in a little ice cream.



There is something to be said for the creamy cold refreshment that goes with the lick of the first summer cone. We look forward to more adventures to get ice cream. The walks aren't so bad either ;)

Berry Picking!

Every year, we go strawberry picking. My most favorite picture of me while pregnant actually happens to be FROM the strawberry patch!


(I was about 7 months pregnant with Patrick Finn here)

But this year, a certain little miss got in the way. Unfortunately, I spent way too many days consecutively commuting to CHOP that it left no time for strawberry picking! I was sad. I had hoped we'd catch the tail end of it.



The berry farm told us there were still berries to be picked...but when we got there, all we found in the area where the berries were near were.....



PEAS! That was OK...but we still wanted berries...so instead, we opted for black raspberries!



We were a little weary as these grow on thorned plants, but Patrick managed just fine. I think he managed to eat more than we collected!!


They won't keep for long, but in the meantime, we can all enjoy some fresh berries in the Conroy house!

Happy Fathers Day!

Happy Fathers Day to the man I love...I've seen your softer side lately...I've seen your strength...I love you for every bit of who you are and who you are yet to be as a father.

A Nursing Moment

Just a moment from our week (one of many many) that I wish to savor forever...Something that we've missed, but mastered at home so quickly...Thank you to my fellow new mama for your inspiration as always!

Blankets and Gardens in the Sunshine

I hope you didn't think I was kidding. I know I said it weeks ago...my goal? Lay with Maura on the blanket under the tree out back. That's just what we did yesterday. I actually did some gardening as well. I went out and bought some flowers for the new pots my neighbor had donated to my cause. I was going for some disorganized splendor and then I decided it would be kind of neat to do mostly herbs!



I'd like to make some rocks to put into my potted herb garden as well! I think they'll add a nice touch to my new garden area!



Maura napped while I switched in between gardening and laying down to snuggle with her in the wispy summer weather. She slept really well last night too! Maybe we should spend some more time outdoors!

Cupie Doll

Maura got her first bath the other night. No, there are no pictures, sad to say...I thought it would be novel to give her a bath in the baby tub at the same time Patrick got his in the big tub. Shoot me now for thinking that was a good idea! He wanted to help...and thus I had lots of water on my floor! YAY! We survived...I'm learning the ropes of having a toddler in tow!

Anyway, when we were done and everyone was dried off...THIS happened...34 days at CHOP and I never once saw this. Mind you, we knew Maura's hair had curl...but we didn't know it would do THIS! My god, this child is a Cupie Doll! For real!

Right Now

I thought I'd share in the right now that Amanda has been posting on Mondays as a new mama as well. Especially since right now, we are home and no longer at CHOP.

Right now I am

* marveling at my newborn daughter (who says we've lost 6 weeks? I'm in denial, she's still new!)

* working a bit on nursing...we'll get there, past every obstacle we've encountered...and I think Maura's gotten the message!

* enjoying home...enjoying normal.

* cuddling in bed with my entire family past the time I'd be on the road.

* thinking of all the other babies we've left behind beeping in the NICU.

I hope your right now is as sweet as mine! Hope you all had a good weekend!

The Best Moment

One last lunch at Potbelly. Me and my girl! A moment I never want to forget!

A Friday Surprise Moment

My moment to come a bit later! Stay tuned! I promise! It will be worth it!

Things are Looking Up!

Well Hello There!



Today is day 33 here at CHOP. Really...that's a long time to spend in a hospital. That doesn't even include the 7 days that I spent at Virtua and the 5 that Maura spent there...It's been a very long spring for us. But things are looking up!

It might be 99 degrees out, but when I went to lunch, I sat in the sunshine for what might be the last time outside of Potbelly. I walked out of CHOP to head over there and passed not one, but two babies with NG tubes. I've done this walk like it's routine for days now. Potbelly has been my one guilty pleasure. It's my saving grace, my half hour of sunshine... It's the one and only thing I'll miss about CHOP.

The NG tube is my insurance policy. It's the tool that's going to help Maura grow. It won't be for long, but it's there...and I'm very reserved about people looking at her. It's a funny thing, because I share all these pictures of her with all of you. It doesn't remotely bother me that she's got a tube in her nose. It bothers me in a mama bear sort of way that anyone could even think about staring at her.

But it's going to be OK. Those babies I saw..it was a sign. Things are going to be OK!

Tomorrow we are slated to go home. I cross my fingers for Miss Maura, hoping and praying that her night is seizure free. She's been doing so well. Knock on wood. Let's hope the clouds are finally clearing for us!

Finding Routine

I yearn for normal. I know "normal" with a newborn baby isn't ever quite normal for a while. It's crazy, it's hectic, you have milk in your hair...on your clothes...and you don't know which way is up. But to me, that's normal!



I think Maura is trying to find her normal. I'm finding that she has more and more awake times. She's bright eyed and moving. She kicks her feet and waves her arms and looks around in only the way that newborns do. But she isn't consistent...then again, what newborn is?



I've got some of her figured out though. She's definitely a cuddlebug. If she's swaddled, she sleeps. I remember Patrick...if he was moving, he slept. I'd put him in the stroller, he'd fall asleep almost instantly! To wake Maura, you just need to unswaddle her. It's like awaking the beast. She wiggles and grunts and yes, she even toots! But she wakes. This is good! It means the phenobarbital is not affecting her as much!

Someday, these drugs, these seizures, they'll all be a blur. But until then, I'll keep praying for normal. This may just be our normal!

Belly Buttons and Signs from Above

As the days go by, I think I'll go more and more insane. I'd rather be home, on my couch, holding my baby, with the warm breezes blowing in the window. Instead, we sit all day here in the NICU...cuddling in a rather comfortable chair. It's no substitute. It's not home. There are beeps in the background and other babies crying. Doctors and nurses are always milling about. And my baby is wired.

I'm always looking for signs. I'm a true believer in signs. Not so long ago, I had a dream. It was right before my last observation at work. I dreamt that I'd walked into my preobservation conference and announced that, "I got nothin." The idea of it was absurd! I'd had a lesson already planned! But when that day rolled around, I'd somehow mixed up my work computer and my home computer and brought in the wrong one...leaving my work computer at home with all of my documents, including the ones I needed for the conference. I had nothing! Luckily, Joe was waiting in the wings to save me via email.



So it's no surprise that my biggest fear of this pregnancy early on was that I'd had a baby with a heart problem. I've been following the following blogs for years:

Sew Liberated
Wonderbliss
MckMama

All of them have heart stories to tell...and I only started reading one for the heart story, because our little ones were so close in age. The other two, I read for other reasons...sewing and teaching!

And when a child in my class this year had a sister born with a hole in her heart, I had a feeling...so when my 20 week ultrasound rolled around, I was relieved that my baby looked fine. Perhaps it's beyond this though. Perhaps this was the universe's way of preparing me for having a baby in the NICU, even without a heart issue. Perhaps it was for Maura's seizures...

Yesterday, Maura lost her umbilical cord stub. It's been one month and 3 days that she held on to it. So when we saw her smiling little button, we thought, perhaps, it's time for Maura to come home. I thought it was a sign.

Then I came in this morning and she had a seizure last night. This doesn't quite seal her fate her in the NICU for a longer stay, but it makes me sad none the less. This is not what I want to see. I'm hoping it was a fluke. Maura needs to come home!

Topamax

I know I've spent much time posting about Maura's downward spiral...and when we were rehospitalized, things weren't looking so great. She was having difficulty breathing without help, the seizures were overcoming her 5,6, 7 times a night. I wondered if I'd ever see an end in sight.



The doctors had mentioned adding a third AED: Topamax. They were very hesitant to do so and kept dragging their feet on it, but I pushed and prodded until they finally relented and did it. Maura is coming to life! She's having restful nights without seizures. She's having great awake periods, and she's just absolutely thriving! I'm so glad they finally did it! I started to wonder if I'd ever see a normal baby through all of this!



She's still a cuddle bug though!

While we still reside at CHOP, it's looking more and more like Maura might come home soon! My fingers are crossed and prayers are sent that she can finally come home and be with us early this week!

A Pool Moment

Just a moment from our week...one that we are savoring right now in spite of everything...Hope your moments are just as sweet!


PS I know I've been quijet over here...not much to say, we are still at CHOP. Maura is one month old as of yesterday. We are trying a new antiseizure medication. Here's hoping we come home SOON!