When your newborn is diagnosed with special needs

Seven months, that’s how long its been since I last updated this blog. Crazy how time flies with a newborn. In that time we’ve gone through the fear of an unexpected intestinal surgery. We’ve survived heart surgery with complications. And we’ve had our highest highs and lowest lows.

I say we, because Nick and I, plus little Jellybean – well, we’ve survived these events together. Jellybean is the true warrior, its her body that’s been on the line. But Nick and I, we’re the parents. So we’re the ones that worry and pray, praise and cry, laugh and live. So, when we received that scary diagnosis – we, as a family, stuttered.

In the hours, days, weeks and months since I’ve both shrugged off the diagnosis and spent minutes staring Jellybean in the face. Looking for the signs, the symptoms so that I can be HER warrior. Special aid where I can get it, therapy as needed, and more. Dr. Google is both helpful and terrifying.

So what does she have?

The day of Jellybean’s heart surgery, we found out (only moments after the elation that arrived with the news that she’d made it through surgery with flying colors) that she was diagnosed with a rare genetic deletion of the 11 chromosome. Otherwise known as Jacobsen Syndrome. A rare, complex and life-changing diagnosis. Instead of celebrating that our daughter had finally overcome everything we were sent into a tailspin of her life’s suddenly limited outcome.

To this day, I wish I had never met that doctor.

And I feel guilty for feeling that way, because it makes me feel as though I fail to accept Jellybean for all that she is. I have so much more to say, but for the time being I’ll leave this as what it is. My daughter made it, she’s a warrior. So I will be too.

Baby Shower Recap

Early in November two of my bestest friends (AKA seesters) hosted my baby shower. It was so much fun and I had such a great time visiting with friends and family!

The theme was Halloween because Jellybean’s colors are purple and green, which fits in perfectly with my college alma mater and the fact that Nick and I are anti-pink. ::grins:: Anyway, the party started with some delicious munchies and fun conversation. Things like witch broomsticks and dead witch cupcakes, plus the coolest cauldron of a drink ever. 

Dry ice makes everything niftier. 

After a few fun games, including the poopy diaper game, we were able to sit and start opening gifts. Oh my gosh y’all…Nick and I were soooooo blessed by friends and family! With everything from adorable outfits, to diapers and wipes, toys and beyond we were literally showered with love! We got our crib fromNick’s  parents and the stroller / car seat from mine. Just blessings. That’s all I can say. 

Here are a few pics from the day. 

   
    

hahaha! We got Nick to eat the diaper contents.

 

She’s Here!

Well, that was certainly a Thanksgiving to remember. A few weeks early and with a whole lot of challenges to overcome, the strongest little girl I’ve ever met has arrived.

She’s the one who made me a Mommy and I’m pleased to introduce our Turkey Baby, otherwise known as Jellybean.!

She was born Thanksgiving Morning (11/26) at 9:46 a.m., weighing in at 4 lbs 15 oz and whopping 17 inches long. Just look at all that hair!!!! (That’s from me by the way.)

She has been in NICU and the CICU (Cardiac intensive care) since moments after her arrival. I’ll explain more on that as I post more. But don’t be shocked as this blog becomes a way to update everyone on how she is doing, etc. Luckily, I also have fun stories about the baby shower, maternity pics, and her birth story to share as well. Those will likely be interspersed with tails of her heart journey.

I have to leave you with one more pic, I mean come on. ADORABLE!

I’ll have a lot more to share later on, but its time for me to sleep for a few short hours.

 

The last month

Its hard to believe that this pregnancy is almost over, and yet at the same time I’m counting down the days!

I always figured I’d be the one to take lots of photos and document every moment of pregnancy that I could. Instead, I’ve been overwhelmed with anxiety / depression issues, exhaustion and life in general. I have managed to take a few more pictures with some consistency over the last few weeks. So I’ll put those below just to help me remember the belly changes.

But seriously, life has been crazy. Between getting married, trying to attend a birthing class, my array of doctor visits, school and work, and lots of family time the month of October just FLEW by. At this point we’ve had our baby showers (one at work and one with friends / family) so we’ve received a ton of gifts.

THANK YOU EVERYONE! A recap is to come in the next week or so.

This means it’s now time for us to review what we still need and get to shopping. I think the biggest thing we need to purchase is a pack-n-play / bassinet option so she can have somewhere to sleep when she first gets home from the hospital. I’ve done a ton of research on this and I feel confident in the one we’ve chosen.

We also have started doing (the first of many in the years to come) her laundry so that I can organize her clothes, her changer and the closet spaces. I will say it’s a very weird sensation to be piling up clothes, blankets and other such items for an infant. Good, but very very weird.

And now – for those pictures: (pardon the quality)

33 thru 34 weeks

On a final note, does anyone have any other tips or tricks to prepare prior to this baby arriving that they could share with me? (Besides the obvious ones of take it easy, rest, cook in advance, etc.) As a first-time mom, I’m sure I will have a sharp learning curve ahead of me!

 

Both a blessing and a curse

Everything will be alright. At least that’s what I tell myself at night when I’m awake and the anxiety hits. Or when I start mentally freaking out about all the pending changes that are coming, whether we are ready or not. Here’s the truth y’all – I’m SCARED SHITLESS.

I’m scared of the changes pending to my marriage and relationship, the LIFE change that being a mom will bring and of course her health.

Everyone says to relax and enjoy this last time, but to be frank – its near impossible for me to do so. Instead, as I feel her move in my stomach I think a combo of things such as “ugh, please don’t make me vomit” or “Seriously kid, must you punch me in my lady bits” and lastly (hardest one to admit) “why don’t I love her already?”

I mean, I do, but. . .I don’t? It’s such a weird thought process to have. And, at best, the thing I’ve decided is that this emotional numbness is my coping mechanism for what is to come. Already, for her birth, I’ve had to prep myself both mentally and emotionally to give birth and then let her go. Let her go somewhere I can’t follow. Somewhere where I won’t be the quick decision maker, etc. Well, I’ve prepared at least to the extent that one has in terms of my ability to prep for such a thing.

I know that Nick will be with her and I know he’ll be amazing at all of this. I’m just, it’s hard to open oneself up to that kind of pain and anxiety when struggling with anxiety and depression in the first place! So, instead I’m preparing to bring her home and learn about her then. But it does mean I feel very disconnected from the
end of the pregnancy and the movements, etc. that occur on a daily basis.

I wish pregnancy was over. I wish we were past the heart surgery. I wish I could reassure myself that this won’t have the potential to break me mentally, or strain my relationship. But, alas – there is no guarantee in life. I’m beyond grateful for this blessing, one I never thought would come. But, I’m also just so mentally over it.

3.5 weeks and counting till the end.