Looking Back One More Time...

Last night, I rocked Maura to sleep in her room.  As I sat there, the pile of consignment items stared back at me from the shadows.  There, on top of the pile, were my favorite maternity jeans.  I'll never wear them again, that's for sure.  So off to consignment they go.  But as I sat there, the moment brought me back in time to the NICU.  I don't know why post partum, and not before, but I remember wearing them at CHOP.  Oddly, I remember waking up the morning we were taking her home and slipping them on....the first morning.  It was so very vivid as I sat there, almost surreal.  There I was, in the bathroom of NIC West, after a shower that hardly livened me up after one of the longest nights of my life, and these jeans were something of comfort...and I slid them on and pretended like I was just fine...like we were just fine...I mean, we were headed home, we were fine!  I didn't know it then.  I didn't even have the inkling of it all, that we'd return two days later.  

It was just a vignette of a moment that I saw flash before me as I sat there, rocking my 16 month old to sleep.  She's so different now than she was then, but as I hold her tiny little body in my arms in the rocker, she's still that sweet baby that I snugged for 35 days in the NICU...and I'm still that same mama, still trying to cope with it all...

Nuby Infafeeder! Success!

One of Maura's biggest challenges so far, oddly, has been using a cup of any sort. Yes, I know, you can tell me I did it to myself.  I remember distinctly telling the doctors at CHOP that she had no need to take a bottle, that I would be solely nursing her anyway, but here we are at 15 months, and guess who is still solely nursing that dear child?!

We've tried quite an array of sippy cups.  She's very resistant to them!  So when my Softflex Infafeeder arrived from Nuby, I was very excited to give it a try!  After all, they also sent me a variety of interchangeable tops for it!! The top it comes with is a spoon.  It's actually wonderful to use with baby food because it's soft in her mouth.  I wish I had this earlier in our difficult days of feeding purees!! It's shape is so natural that Maura just know what to do with it!

We also use it for learning how to drink from a cup.  There are several other tops to choose from, so we went with the spout.  So far, Maura has taken to biting sippy cups.  Having a vast array of cups from Patrick to try, I feel like we've tried them all.  When I handed this one to Maura, she had no problem grabbing it and getting it to her mouth.  The soft sides of the Infafeeder make it easy for her to pick up.

The other day, our speech therapist came out to see Maura and she LOVED the cup!  She hadn't seen it before, but there were a variety of things we liked about it:

- It's assistive - The bottle itself was made of silicone.  As Maura drinks, I can help her along by squeezing the sides of it to get a sip to her when she tries to "bite" it.

- The valve is soft - muchlike a breast, it has a soft wide valve.  This helps Maura get the idea of "latching" on to it.

- A variety of nipples and tops can be used for it! Starting with a bottle?  No problem!  It easily transitions to a soft spoon that feels familiar on gums, as well as a variety of sippy spouts!

- The shape is a familiar shape that transfers eventually to regular Nuby sippy cups.  I love how everything transitions so seamlessly!

We won't be going anywhere without our Nuby cup.  It's really been the one that's worked best so far.

You can pick up a Nuby Infafeeder right here:

A Bonnet for the Scorcher

It's going to be a scorcher today!  Yesterday, I figured I'd make Maura a new sun hat for the pool...something that was reversible and also flexible.  I used some Cloud 9 Organic and some Michael Miller Seafoam Orchid.  I made it from scratch, but I think I'm actually going to do a tutorial for it!  I feel like I spent a good amount of time looking for a specific kind of bonnet and couldn't!  So look forward to a tute soon!

What do you think?  Think it will keep her cool at the pool?

On the Move!

Just when I think I've got her figured out, she does something to blow my mind.  She's always been that way....even in the very beginning.  After all, it was a mere 30 minutes before we were slated to leave the hospital that her little body decided to have a seizure, and she's been like this ever since - the last minute lady, we call her...our Pokey Puppy.

So it really should have been no surprise when she had two bouts of uncontrollable crying last week that something was up...something developmental.  She wasn't going to let me post without proving me wrong.  She put one hand in front of the other and did it.  She is officially a crawler now!!

If that wasn't enough, we came home on Friday night and I sat her on the floor.  I clapped my hand, and she did the same.  I did it again, and so did she!  She really is clapping her hands!  And waving too!! Who would have thought?!

So just when you think Holland is looking a bit cloudy, there are some tulips up on the hillside...the most beautiful, colorful ones ever.

Cake

There is something glorious in reaching One.  The cake in particular is a moment you wait for.  A few months ago, we wondered if Maura would even be capable of eating cake on her birthday.  She wasn't even eating solids at Christmas time.  Lucky for us, she caught on.
 

I waited three whole years before Patrick would even touch a cupcake.  He was always a bit OCD about getting his fingers into the whole cake business, but by three, he decided that he really did indeed like the frosting if nothing more, and we relished in the fact that he actually, for the first time in three years, had cake on his face!

Maura is certainly ahead of the game here.  She loves her cake..and not just any cake, Alicia inspired me to make a Lemon Poppyseed cake for her!  Lemon Poppyseed!  Can you believe her mature tastes?

Yes, my girl likes to eat!  I'm glad we could share in her cake moment with her.

Our Visit to Holland

I'm sure many of you have read that story Welcome to Holland, but in case you haven't, take a moment to read it here. It might seem like my life is fairly normal, but the reality of it all is that while Maura hasn't had a seizure in over two months, she's far from your normal baby who is about to turn one.

Let me give you some perspective.  There are no baby gates in my house.  This is not because I'm so free that I let my child roam free.  It's simply because Maura isn't mobile enough to need them.  If the girl moves ten feet in an hour, I'm lucky, and that will be backwards at that.

Maura still sleeps in a cosleeper.  Yes, she's probably too big for it, but she doesn't roll or move around in her sleep at all.  She really isn't capable of it.  It's actually nice because she can still be so close to me without being in my bed...and considering she nurses half the night, I'd rather have her nearby.

Her crib? Where she currently naps on occasion?  It's still set at the highest setting. Maura doesn't pull up yet.  She can't possibly fall out of her crib if she doesn't even pull up to sitting, muchless standing!

Here we are, on the brink of one, and Maura isn't even crawling yet.  She only recently got enough strength up to pivot and roll from her belly to her back.  While it's nice to not have to worry about her getting into everything, we really are in Holland.  Someday she'll get there...until then, we'll enjoy the windmills...

I remember sitting in the NICU a year ago and chatting with my cousin Melody - one of only three visitors we invited to the NICU - talking about "A year from now" and "around her first birthday". We said we'd do something special to honor our time in the NICU. So it was no surprise when they announced March of Dimes March for Babies nearby just 10 days before her birthday that we'd be walking for sure!

I registered at the end of December. It seems like so long ago, on the other side of the seizureville woods in February! I set my team goal for $500. Never did I realize the compassion that would come out of friends and family. I am overwhelmed by their generosity that allowed us to triple our goal! We raised over $1500!

I watched the weather carefully all week, and unfortunately rain was in the forecast. It did indeed rain, but luckily it was only a drizzle. The pouring rain held out until just after we finished our walk. Someone was indeed watching over us!

The Friday After Easter .... One Year Later

As I got dressed this morning, I couldn't help but think about one year ago today. Well, it wasn't really TODAY, but with Easter in context, it was. It was the Friday after Easter, and it was your average day. I was still working. I'd been back to work 4 days and had 5 to go before my leave began. I was tired. I lost my momentum during Easter break, and it wasn't coming back. If I could just get through the following week - and NJASK - I'd be able to breathe.



Maura had other plans. I was just over 35 weeks pregnant. I headed to bed early, only to awaken a little after 1 am. I was bleeding...a lot. My heart sank. Joe was still up. He hadn't even made it to bed when I called down to him. We had to go to the hospital. I was having this baby soon.



This is where it all really began. It didn't begin in the NICU. It didn't begin at CHOP. It began in the middle of the night in my own house, where the reality of my placenta previa really set in: It wasn't moving.

The days that followed were full of uncertainty. We were tired, stuck in labor and delivery, and I had no idea when I was really going to have this little baby. Joe went back and forth many times that weekend, shuttling Patrick between family. We hadn't really planned on this.



As I look back on the last year, it's been a whirlwind...no..it's been a tornado. It's been the hardest year of my life. As we come full circle to Maura's birthday on May 2nd, my mind reels. I have joy for a beautiful special little girl, but I also have much sadness. I missed so much in the haze. As I process it, I hope that next year I'll report that I've come to terms with it all..and until then, I'll just take some time to snuggle that little one who smiles at me like an angel from above...after all, isn't that what she is?

Maura Never Cries...

Maura never cries...I'm sure you've heard me say that before. Really, I'm not kidding. Maura doesn't cry! When we were in the NICU, I'd sit for hours and listen to other babies cry. I'd secretly wish that Maura would cry. There were even "seizures" that were documented because if she cried, it must be a seizure. She never cried because she was hungry or tired or wanted to be held. It was rather a running joke for a while, but in all honesty, it's rather stuck! Maura doesn't cry!


She's very vocal and she'll yell, but outside of toppling over and wacking her head on something, Maura never cries. Maura also never laughs....mostly... You see, we aren't really sure why. The meds she takes could "numb" her down a bit. It could be her general demeanor overall, but to get Maura to laugh, you really have to work. You have to lay her down on a soft surface and grab her feet and bounce into her and really jostle her or you have to dig into her sides to hit some tickle points really deep down inside JUST to get a chuckle out of her...so the very idea of her rolling in laughter is something that purely doesn't exist.

Does it make me sad? Yes! But I remind myself that she's just about the HAPPIEST baby anyone could wish for. She's content. She smiles all the time. She flaps her arms like a little bird when she gets excited. She just doesn't laugh...

....except when she's on the swings. When she's on the swings, she laughs every single time she comes towards me. I love to watch her swing because its the ONLY place I can get her to really really laugh. I caught it tonight on video, so I can look back at it and smile whenever I want. Maura giggled tonight...more than just a chuckle, an outright giggle, and I'm overjoyed about it.

Maybe someday she's just lay on the floor and roll in laughter at something her brother does, but for now, if the swing is the only place I can really get her to giggle, I'll take it!

Coming Up for Air

Whew! That was a long month! I feel bad. I've been disconnected here. Are you still out there reading? I hope so. I have some fun things to share over the coming days. Yes! I have been productive in this crazy thing we call life after all!

February was the month that was. I say Good Riddance as the month was riddled with seizures for Miss Maura from start to finish. Every time we felt like we might be in the clear, we were back in the thick of it. In the end, we realized that what Maura really needed was a return to the Topamax. I should have known better. This was our miracle back in June. It was THE drug that kept her seizures at bay. At least we know that she's not ready to say goodbye to any of her current meds. I'm just sad that it took a whole month to figure it out!



To this I say Welcome March! I look forward to the arrival of Spring! Hopefully we've put the last of the seizures behind us and we can move on. I say that cautiously this time, but maybe we'll be lucky!

Marching for Maura

This picture was taken just a week before Maura was born. It was a beautiful week before Easter and we were finally enjoying the sunshine after a long snowy winter. We travelled for Easter to East Stroudsburg, PA - Just short of 2 hours away. Never did I realize that a week later, a month from my due date, I'd be meeting Maura.



Of course, when she came out, we were concerned. She was a 36 weeker. 36 weekers have a good prognosis. The most I could expect? Respiratory problems. Miraculously, she was fine after a rough bump for the first few hours! This picture was taken of Maura on her second night. This was before our life changed. This was when things were normal.



Our lives changed dramatically just 36 hours into her life. I remember that night...we walked out of the NICU. Joe cried. I looked at him in the eye and said that it was "just for a few days". Little did we know that we'd spend more than a few days in the NICU - We'd spend 35 days!



The last 9 and a half months have been spent worrying about her. We had a great streak for a while, and hopefully we'll have more of those! But it's been a difficult journey to say the least.




This year, just a week before Maura's birthday, Joe and I along with some of our closest friends will be walking for March of Dimes. We are doing this not just for Maura and all the help and support that we received during our preemie experience, but for all the babies yet to come. The NICU experience is not one that I wish on anyone, but if we can give someone hope in that fearful time in their life, we'd sure like to try!

If you'd like to join us, we'd LOVE to have you! If you'd like to make a donation on behalf of our team, we'd be forever grateful!

Make a Donation Here!


Thank you so much for all of your support. We couldn't do this without you!

Seizureville

With every seizure that happens, I hope it's the last. That hasn't been the case lately. We aren't very much enjoying this extended stay in Seizureville. It sucks. Really, it does!

After two seizures this time, I dragged Maura up to the pediatrician's office to have her weighed. I was convinced she had grown. She feels heavier - especially in the middle of the night when I nurse her. Sure enough, in a mere two and a half weeks, the girl has gained a pound and a half! Seriously child, what are you eating?

Oh wait..never mind...breastmilk...and food, her latest trick!

Of course, we adjusted her meds and hopefully they'll stick for a while. But every time this happens, it forces me to look deeper at our life...deeper into the future...thoughts - rather nightmares - about going back to work eventually and this happening then. The money we don't have...the anger I hold towards a family member who wronged us when we could certainly use a bump right now. I also look grimly at the past. You know, like 9 months ago when people tried to reassure me, "Just think, in a year you'll look back on this and it will all be a fuzzy distant memory!" They meant well...We all hoped it was so...but 9 months in...in the thick of it...it doesn't feel so good. Does that make me angry at them? Certainly not. Those are the things I still wish for...and maybe someday, we'll put the cap on the bottle of meds and she'll never have another seizure. Will I ever forget? Will I ever not worry that they are there lurking...just waiting for us? Probably not.

This time I came close...5 months was a long time! It fooled us good. This beast called epilepsy won't fool me again. I'm watching...and I can always hope that she never has another seizure.

Developmental Leaping

Last week was a bit of a rough recovery...for both her and me. There it was, in my heart, the feeling that it was over and now it's not. So as she grows, so too do fleeting images of a toddler playing with a watchful eye behind her, just waiting for the next seizure to hit. She could grow out of it still, that leaves us some hope. But for now, we continue on.

Something good did come of this batch of seizures. I really do think that sometimes they are a sign of developmental changes. According to this interesting book, The Wonder Weeks, the brain waves begin to change around this time, 38 weeks of life. So I think she just explodes developmentally and her little brain can't process it all. Maura has decided that she would like to eat.




It wasn't a surprise to me that it took her so long. Patrick was a late eater too. As she came out of her seizure induced haze this week, she was cranky. I figured her out though. She wanted to eat! Three meals a day kind of eating! Of course, she still nurses regularly, but the girl has decided that she is going to open her mouth an gobble down food like nobody's business.

I know there are many more developmental leaps to come, but this was a big one for her. Here's hoping the next one doesn't bring on another cluster of seizures. Mama has a particular hard time with it.

5 Month Streak - Gone in a flash

Five months seems like a lifetime ago. That's how long it's been since Maura's last seizure. Susan, our PT, sat there on the floor as it happened with me and in the quiet, all she said was, "How long has it been?"

It's all that was needed. I was obviously disappointed. Who wouldn't be? Just a day earlier, I'd sat in my OB's office and cried my heart out and said that I truly, in my heart, believed we were done.



I was wrong.

So for the better part of the weekend, we spent our time allowing Maura to rest at home and adjust to her new Keppra dosage as we cautiously go about our lives. Ten seizures later, Maura is spent. Her poor little body is limp and tired. The little girl I know who loves her exersaucer like it's her command center is lounging around sleeping like a newborn. She hasn't smiled at us since Friday. Maura, the girl who I affectionately call Cheeseball, isn't smiling now.

Still, slowly she's coming back. Let's hope for better days ahead. In the meantime, we're still here.

How the Cookie Crumbles...

The other day, I reached into the fridge for Maura's daily meds and realized I didn't have to anymore. It was the last day she was slated to get Topamax, but really, after 3 weeks of weaning, what did it matter if she didn't get that last Tuesday dose? It didn't...so we are left with one. Just the Keppra these days...from three anti-epileptic medications to just one. Not bad ehh? Seems as if Maura is doing really well!!

But then, there's the dark side. The aftermath of it all. There is processing to be done by me. Yeah, you all saw it. You saw me hold it together when they pulled my baby from me 4 weeks early. You watched me stand tall as they kept her in the NICU, transferred her to CHOP, and kept her there for 35 days. I somehow managed to get through a brief "vacation" from the NICU in May when she was sent home and had to return. But coping through 5 months of seizure free, falling into normal Maura? mmm, not so easy...



I think it started in November. My cycle returned on me. I've never been that lucky to keep it at bay. With Patrick, it returned exactly a year to the day that I found out I was pregnant with him. Ironic ehh? Even though I'm still nursing full time, it still came back to get me after just 6 months. And then in December, it was worse. I was melting down...I didn't realize it fully then, until the quiet of January set in.

I have post partum depression. Yeah..you think it hits in the first 6 months. Here we are, Maura will be 9 months old in a few weeks! But let's put the pieces together. The rollercoaster didn't stop in May or June..In fact, Maura's last seizure was on August 31st. The summer was a whirlwind. The autumn was no slower as I filled my days with things...a big consignment sale, Halloween costumes, rearranging our house to accommodate four, painting two bedrooms, creating a train room, inventing a girl room, oh, and Christmas! I kept busy...and I kept the PPD at bay...but it was there...I just didn't let it creep in...

And the further we got from Seizureville, the worse I felt. I missed the NICU. I missed my "job" there. I missed having a greater purpose. I'd have nightmares where I'd wake up in the middle of the night and reach over Maura's face just to make sure she was breathing - more than once! I began to feel like I was useless and lonely during the day. I wasn't enjoying my time with Maura and Patrick and I was filling it with things to do. I was anxious about everything...overthinking going back to work next year (if then)...money..everything! And once the quiet of January set in, I checked out...or rather really checked in with myself and admitted that I do indeed have a problem going on.

So I went for help. It took a lot of gumption to admit that there was a problem...but after doing it, I just feel relieved. And hopefully things will get better now.

So why am I sharing all of this? Well...I've been sharing this rollercoaster straight from the beginning...in between posts about holidays and gifts, there have always been Maura updates...and I've always spoken from the heart very sincerely...and you know what? The aftermath of the NICU isn't all peaches and cream and that's OK...and if I can help one person out there realize that, I'm happy.

Looking back on the NICU one more time

We were featured over at The Preemie Mom Blog this weekend! Go on over and check it out! And if you know anyone who might be in need of this valuable resource, please pass it on! I wish I had this when I was in the NICU with Maura. While it was only 8 months ago, it seems like a distant memory. I wish this for every NICU mom today!

http://preemiemomblog.blogspot.com/

A First Foods Moment

Just a moment from our week, one to remember and savor always...Thanks to Amanda for her weekly gathering of inspiration!

What special moment do you want to share this week?

Thanksgiving Dress

I knew the day was fast approaching. We'd been working on Maura's room, and thus any sewing projects had long sat waiting for me...but the fabric was up there in my studio.



I'd bought it specifically for the occasion. There was a dress in a shop on Farnsworth Avenue that I fell in love with. It's simplicity was just delightful. I knew I could recreate the idea for Miss Maura. I promised myself she'd wear it for Thanksgiving.



The week blew by, and on Wednesday, I knew I had to take time to do it. After all, baby clothes don't take nearly as long as adult clothes do. So I sat down with my Thanksgiving fabric, and I made her this dress.

And she wore it on Thanksgiving, just as I had planned...

6 Months - Neurology Update

We made our 6 month pilgrimage to CHOP yesterday to see Maura's neurologist. Honestly, I wasn't sure what to expect. Maura is more than two months seizure free these days. She's thriving, really. So I was really curious to see what Dr. N would say to us. There were no EEGs or MRIs or anything special this time around; just a meeting with the doctor. She sat Maura on the exam table and watched her tracking, played with her grasping, felt out her tone...you know, all that stuff that neuro does. But there wasn't much that I could grasp as we talked about Maura's progress...She ran some numbers on her handy calculator to see where Maura was in terms of meds per kilogram and then we talked.

Maura is thriving. The meds are apparently doing their job, but her levels might be really low. We weaned her off phenobarbital a little over a month ago and saw no repercussions from it. In my mind, I was hoping we'd wean her off another. I guess I just got my hopes up that somehow, we could put this whole business of epilepsy and the NICU and medications behind us sooner rather than later. Now don't get me wrong, I never thought we'd just wean her off the Keppra and the Topamax together because that's just silly...and I suppose I kinda got what I was hoping for: The conversation steered towards a blood draw...to figure out where Maura's current levels stood...and maybe even talk about weaning her off Topamax if that particular level seemed very low...and that's another huge step!




So I pushed a bit farther. I asked where we move from there...if we wean her off this, then what about the Keppra...and I suppose I shouldn't have - for my own sake. My friends, we are talking a few years. YEARS. I don't think I really wanted to hear her say years. I wanted to hear her say "oh....a few months..."

I felt my heart sink at that.

There really would be no quick fix. No pulling her off and moving on by her first birthday....and while I know how far she's come, it was a gentle reminder of how far we've got to go.

As for those levels, I'll update in the next few days when we know more about whether or not we'll be starting another wean...for now, we continue on par for the course we're on. After all, it still seems to be working.

6 Months Today!

Well hello there, 6 months! I hardly saw you coming!



Did you know that November is Epilepsy Awareness Month? It is...and of course, this year we are more aware than ever. Maura met two months seizure free on Halloween. It feels good! But I still wonder if one is lurking in the shadows - a relapse - and I hope never again.

So 6 months! Yeah! 6 months ago today, they told me I was having my baby. She (she!) was coming out of me. Her eviction notice being processed. A half a year ago! Where did the time go?



It's been a long six months. Between biweekly physical therapy appointments to help Maura catch up to her peers, to neurology appointments at CHOP, we've been busy!!! And where did all of this land us? Well..there are two meds standing - Keppra and Topamax. While I try to convince myself that she can come off them, I'm curious to see what Neurology has to say about everything in the coming week. Maura is behind developmentally. We knew she would be. It's really no surprise. I mean, really...she spent the first 6 weeks of her life sleeping more than she ever did in utero. Muchless while being drugged up and connected to too many wires to count, of course it will keep you down! But she's ever so slowly catching up. She loves to bear weight on her feet. She gets this proud little look on her face when she does it, it's so cute! She's not rolling. And only just last week did she giggle for the first time. Getting giggles ever since has been like pulling teeth. It's like she needs extra stimulation to do it! She's just a laid back gal! Her head control has gotten astronomically better in a month. She's tracking very well. She's actually starting to swat at toys and she'll take a toy from you if you put it in her hand and bring it to her mouth. While these seem like tiny milestones to some, they are huge for us. They've taken us a long time to get to! Maura is a talked too! She squeals and chatters all the time...nothing definitive, but I had no idea she'd be such a "talker"! She'll get there, slowly but surely.

In the meantime, please keep those less fortunate than us in your thoughts and prayers this month. Feel free to donate to the Epilepsy Foundation. This disease is a complex beast. The doctors don't know all that much about it, but they know hot to trigger certain types and how to control a lot of the seizures . Some folks aren't as lucky as we are. Some folks are dealing with seizures all the time, even with meds. Hopefully one day, nobody will have to sit in the NICU for 35 days wondering if they'll ever get to take their baby home as they wait for these young seizures to stop. Someday they'll know how to stop them - for good.