Anxiety

I haz it.

To be truthful, I’ve always had anxiety.  This is nothing new for me, but it is different now.  Having kids definitely kicked it up a notch.  Learning I have a special needs child kicked it up a few more.

There are days where I am just a mom, and we are just a family, like any other.  I don’t see (or at least don’t focus on) Harper’s delay’s, or therapy, or doctor’s appointments.  I love those days.  When my hands and heart are just full.

And then there are the days where I get stuck, where ALL I can think about are Harper’s therapies, and how much she isn’t progressing (even though she is, just at her own pace), and her future.  And I become so filled with anxiety, and so filled with fear I can’t think about anything else. I worry about Nolan-worried that because all my energy and focus is eaten up with worries for his sister, that I don’t have anything left in me to worry the normal worries for my boy. Along with all this comes the unpleasant feeling that I’m failing-that I’m not doing enough for either of them, if that’s even humanly possible.  Is your best really ever enough?

Sometimes I just let myself sit and stew in the anxiety, knowing its not permanent.  I let myself be angry and sad that my life has taken so many turns I never expected, that it has been so much more challenging.  Sad and angry that Harper’s future will be so different than I ever thought, and realizing that is a problem for me to deal with, because Harper’s future will be just what is should be. I know after I allow myself to wallow for a bit, I will have to put on my big girl pants, pull myself together and be the best mom I can (even if that’s not enough) for these two little people that God has entrusted to us.  I have to believe he gave them to us for a reason, because he knew it would give my life purpose, or because they would give someone else’s life purpose or maybe because I was the best person for the job for these two angels.  I don’ know why, but I have to believe the God does and that he is in control and that if Harper or I needs lifting up he will be there to do it.

I hope to wake up tomorrow, just a mom, embracing OUR normal.

I’m a lucky girl

While I sit at my desk and work, I get to look up at pictures of my beautiful, amazing kids – and I don’t know how I got to be so lucky.  How are these possibly MY babies?  Not too long ago I was looking up at motivational pictures and phrases, begging me to hang on, not to give up my dream.  At home, in the middle of the chaos, and the diapers, and the tantrums, its easy to forgot to really stop and notice just how beautiful and amazing they are, and how lucky I am.

A photo is a snap shot in time, with out the pressures of living, and sometimes that’s what I need to remind me.  Our life hasn’t been easy, and I don’t expect it to ever be, that just seems to be who we are – and that is something beautiful in that imperfection – And when I have these nuggets to love on, how can I not feel anything less than the luckiest girl in the world.

Mommy Friends

I made a new mommy friend last night – a very special mommy friend! Out of the 400 or so Pitt Hopkins cases world wide, we just so happen to have another family with a son with PTHS who lives just a few miles from us!
It is crazy how having something like this in common can make you feel instantly bonded. We met for drinks and I’m so happy we did – she is incredibly sweet, and has been dealing with this for longer than me so it was nice to hear her perspective. I’ll be honest, her son seems to be pretty low functioning and that scares me because I have such high hopes for Harper, but even with all their challenges, so seems to hold it together pretty well.
In Nolan news, he has started MMO one morning a week and it seems to be going well. I’m not there, so I don’t know exactly how he feels about it-but he doesn’t cry when we drop off-so that’s good:) My skinny mini is now into the 50-75 percentile for height, but poor kid is still <3% in weight. So, we're working on beefing the boy up-pediasure shakes, extra snacks, ect.
Eric and I are starting a small group tonight through our church – focused on marriage. I figured that will all the kid centered stuff going on in our lives, we needed some time to focus on us, and try something different than the standard date night.
Here are the kids at lunch-I LOURVE that my nanny sends me pics through out the day-its proof for me that they are happy and I'm not totally screwing them up by not staying home with them!

Worst.Blogger.Ever

So, safe to say, I suck at keeping up with this blog.  But I’m sure you get it-sometimes life just gets in the way, and things get pushed to the back burner, again, and again.

I was motivated to write this post though.  I know when I was going through our infertility journey my blog touched a few people, and in some small way helped them feel less alone.  Maybe I educated a few people as well.

I know how another cause to promote and educate on, and maybe a few people will read this post and feel less alone. 

As I may have mentioned in my earlier and rare posts, Harper has been developmentally behind for a few months.  In order to get her back on track, we started physical therapy with her, to work on her gross motor skills.  A few months passed, and she wasn’t making the progress we had hoped, so our pediatrician referred her to a neurologist, who ordered several tests, including an MRI and a microarray analysis of her chromosomes.

We fully expected all the tests to come back negative, as a large majority of kids with low muscle tone (which she has) has no medical diagnosis for it.  Her MRI did come back normal, as expected.

Her chromosome analysis however, showed a small deletion in the 18th chromosome. A little missing material.

This deletion and missing material indicates, and she has now been diagnosed with, Pitt Hopkins Syndrome. 

In a nutshell,  Pitt Hopkins Syndrome (PTHS) is a rare genetic disorder affecting a specific gene in chromosome 18, called TCF4. It is characterized by significant developmental delay, problems with motor coordination and balance, breathing abnormalities, seizures and intellectual disability.  Most individuals with Pitt Hopkins do not develop functional speech.  Children with Pitt-Hopkins syndrome typically have a happy, excitable demeanor with frequent smiling and laughter (which totally describes our sweet Harper!)

Since the gene that causes Pitt Hopkins was only found in 2007, currently there are only about 350 children worldwide diagnosed with this syndrome, however there are likely more, that are currently undiagnosed.

Going forward we are gong to continue with her physical therapy and occupational therapy, as well as speech therapy.  We are going to continue seeing her neurologist and will most likely start seeing a developmental pediatrician as well.  Our goal is to give our angel every possible advantage we can, so that she can reach her maximum potential.  We know that there is a reason she was given to us – and we are blessed that she is our daughter. 

A parent never expects that they will have a “special needs” child (nor does anyone expect it will take multiple rounds of IVF to conceive their children!)  You start off with this little squishy bundle and imagine how life will be, and the road they will travel.  All of a sudden, Harper’s road is starting to look a little bumpy, and much different than the one on the map in our heads.  Our challenge, as parents, is to accept this new road and embrace it.  It can’t be changed, but her journey can most certainly be affected by how we handle this, and how with determination and love, we do everything we can for her and with her.  And somehow, in learning how to navigate this, we also have to remember that Nolan, is no less “special” than his sister-they are just more unique they we ever realized!

If you want to learn anymore about this syndrome, here is a good website that has some great information.

http://pitthopkins.org

XOXO

 

9 more days

In 9 days my nuggets will be 1?! How is that even possible?  The last year has been one of the most challenging and most rewarding of my life.  Every day I look at these precious little humans and wonder how they could possibly be mine.  How can I possibly deserve to be their momma?  How can I be the momma they deserve.

Everyday they are more interactive and fun.  At times I miss the newborn tininess, but watching them learn and do new things is so much better.

Harper is in PT for developmental delays.  Her therapist has diagnosed her with low muscle tone-so we are working on building her strength and helping to get her to where she needs to be.  The worry wart in me is concerned that there is more going on than just a muscle tone issue-but we will just have to wait and see-its too early to tell.

Next weekend is their birthday party – I’m trying to strike a balance between doing it up and having it be special and remembering that they are 1 – and have no clue what is going on!

 

2014

I have to say that 2013 was the most life altering year I’ve ever had. I felt so many highs and lows, from intense depression to complete and utter joy. It was an incredibly challenging year, but also a year filled with the most contentment and love I’ve ever felt. How could it not be, when adding two beautiful little people into the mix!

Our holidays were great-exhausting, but it was awesome to have the babies with us! I’m excited for years to come when they really can participate! The babies turned 7 months on New Year’s eve-its hard to imagine that these are the same babies born just months ago. Nolan is already like a little man-sitting, grabbing, “talking” and laughing. His personality is already so big! Harper is still the more chill and laid back baby – but she loves her snuggles and loves her mama!

While I can’t wait to see how they grow and change and we are able to “do” more with them, it makes me sad to think about how fast time is passing and how quickly they won’t be my little babies anymore. Since having them, I have become acutely aware of the passage of time-probably because I have the babies as a tangible gauge and reminder.

Here are some pics of the nuggets ❤

I’m still here!

Sorry for the radio silence but life is BUSY!
The babies are doing great! They are 12 and a half weeks old and will be 3 months on the 31st.
The amount they have grown and changed in such a short amount of time is amazing. From being 3lb12oz and 4lb9oz to now (we will know their new weights on Monday) and from being super sleepy preemies to babies that smile,coo, and reach for toys is incredible. Nolan is consistently smiling and “talking”. Harper is starting to interact more and rolled over for the first time last night-poor thing-it scared her to death!
We’re making awesome progress on the sleeping front as well-The babies go down around 9pm and one usually wakes up sometime b/t 2 and 4am and then they sleep again until around 8am. There have been a couple of nights that Harper has slept through and one night they both have! I can’t wait until that is the norm!
I started back to work last week-its been hard to be away from the nuggets, but ultimately I think its been good for me. It gives me a routine, gets me out of the house and gives me a break from baby care. I love our nanny and really feel like the babies are in great hands with her.
Being a mother is everything I dreamed of and nothing like I thought it would be at the same time. If I’m going to be totally honest its taking me longer to “bond” with them than I thought it would. I love them to the depths of my heart and would die for them, but I still don’t totally feel like they are “mine”. I think that I spent so much energy trying to protect myself-from the miscarriages and unsuccessful infertility treatments, and then worrying my entire pregnancy, that its taking me longer than your “average” mom to feel that closeness and tear down the walls. Although I’m feeling better now, I’m also fairly certain I was dealing with post partum depression and anxiety as well. Now I can recognize just how miserable I was feeling and that it wasn’t because I’m a bad mom or not meant to be one-but mentally I was in a bad place. While it makes me sad that their newborn days are clouded by that, I know that we are on an upswing and that the connection I’m dreaming about is there and will grow with time. Right now I’m just focusing on snuggling the heck out of my nuggets!

6 weeks

The babies will be 6 weeks old tomorrow.  My 40 week due date was yesterday-that is crazy!

They are both doing great and growing like little weeds.  At our last pediatrician appointment Harper was 6lb 9 oz and Nolan was 6lb 1oz-gaining like champs!  That was almost two weeks ago so I would bet they are both over or close to 7lbs.

Now that they are “full term” I can tell a difference in how alert they are.  They spend more time awake and seem to focus now and then.  Nolan has always seemed more alert and active-so I can see the most change in Harper.  She will stay awake and happily lay on her boppy or in the swing and just look around, moving her arms and legs everywhere.

Having infant twins isn’t getting easier, but I’m feeling more confident in my ability to take care of them, especially when I’m by myself-so I’m not feeling as anxious, which is nice.  Last night they slept from 9pm until almost 3am-I’m hoping this is a trend forming!

I’m starting to accept that I will, in fact, be going back to work in August.  As much as I can’t stand the idea of leaving my babies, I’m actually looking forward to going back to work and having more to my days, and more to my identity, than babies and mommy.  So, in preparation, I’m started searching for a nanny.  I have a few interviews lined up-and I’m hoping I find someone I love, that seems to love the babies and that I can trust.  I want to find someone sooner rather than later so I can have her come and help me a few days, so I will be able to see her in action!

Here are a few pictures from the babies newborn photo shoot – almost 3 weeks ago!  Nolan was not into cooperating that day-so we don’t have as many pictures of him as we do of Harper!

 

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4 weeks!

The babies were 4 weeks yesterday-in some ways it seems like they have been here forever, and in some it seems like I was still pregnant yesterday.  When I look at these gorgeous, perfect babies, I can’t believe they are mine-I’m still waiting for it to sink in that they are, and I’m their mother.

We are finding a bit of a “routine”, which is nice.  My parents have been great-helping during the day when Eric is at work.  Taking care of two infants is no joke-there is so much to do, and the worst is when they both want to be fed, held, ect and there is only one of me! I can’t stand hearing them cry, especially when there isn’t anything I can do immediately to help them.  Sleep depreviation is tough-I need my sleep and its hard to wake up every 3 hours at night.

They are both doing great though-eating like champs.  We have our 2nd pedi appt on Monday, and I can’t wait to see how much they’ve grown!

1st week home

We’ve made it through week one!  The babies have been home from the NICU since last week-and we’re all still alive so far!  Totally sleep deprived and overwhelmed, but taking it day by day!

I’ll be honest-I thought when people said how hard twins were that they were exaggerating-I thought that since we didn’t know any different it wouldn’t be as hard as you’d expect-I was wrong!

Not only is it physically taxing, but I think its taking me longer/its harder to adjust to my new life than I thought. I have zero time for myself and nothing of what my old life was still exists.  I know it won’t be like this forever-at some point they will be able to go longer between feedings and I will be able to take them places and get out of the house-but for now its a huge adjustment.

I know I am so blessed to have two healthy, perfect babies-and I couldn’t love them more-but its just harder than I expected!