Tuesday, July 28, 2015

"You have a tough baby."

Jack had his first PT appointment with Early Intervention today.  It went okay overall. He's delayed with some of the physical milestones but that's to be expected due to both his dwarfism and the torticollis. Apparently at almost 4 months his head control and certain movements are measuring more like a 1.5 month old. I'm not surprised about this but it was still a little hard to hear.

The therapist had to do a full evaluation so she asked about any and all medical issues and concerns then she had me list off the specialists he's needed to see so far: Geneticist, nephrologist, audiologist, ear/nose/throat, orthopedist. And, oh yeah, all his regular appointments with his pediatrician.

Her response? "Yeah, you have a tough baby."

Umm...screw you.

I don't quite know why this bothered me so much but it really did. And now here I am at 2:00am unable to sleep even though I so desperately need it because I'm upset about her comment.

Sure he has some issues; acid reflux, not a great sleeper, we think he may have sleep apnea, he's pretty fussy in general. And of course, the skeletal dysplasia and all the physical challenges that come along with that.
Sure we have to make some special accommodations for him: His back and neck have to be straight and supported at all times so he can only lay in certain bassinets instead of swings and other toys. He needs (and wants) to be held almost all the time despite my back pain but I can't wear him because it would do damage to his back and neck. I won't be able to put him in exersaucers or sit up chairs. We'll have to physically alter parts of the house to make things accessible to him. He may not crawl. It will likely be a very long time before he can walk...

So it's hard. So he's delayed. So what?
Don't make me feel like we have some deficit. Don't tell me we have a "tough baby" and give me an 'out' to feel bad for myself.

You asked about all the challenges. What about all the good? What about the fact that he is so smiley and adorable that he just melts everyone he meets? That he LOVES his mama and loves people and loves to talk and tell them stories? What about the fact that even after a night of very little sleep when I'm exhausted and can barely function all he has to do is give me a smile and all that just disappears? What about the fact that we worked SO HARD for this baby and it doesn't matter to me that he has special needs?

I don't want a reason to feel bad for him or for myself.  Yes he has (and will have) challenges. But these were the cards we were dealt and I am still LUCKY to have him. I don't want people to give me a reason to forget that. To get so wrapped up in things not being "normal" that I forget that "normal" doesn't matter.  I am so grateful for this child and so happy he is in my life that these challenges don't matter. They don't need to define him or us.

Acknowledging that things are tough is one thing. It's true; things are tough. But calling him a "tough baby" is another. I am grateful for my tough baby.  He is the light of my life, challenges or not.

Sunday, July 12, 2015

LP Playdate!

When Hubs and I first learned at about 36w PG that Jack had dwarfism we had no idea how to feel; what to think, what to do, where to turn to for help. We googled and found Little People of America organization which had helpful info and resources but what really helped us the most was the facebook group we found for parents of little people (POLP). When I joined that support group I introduced myself and relayed our situation and immediately received not only support and understanding but also tons of helpful advice and private messages from every other mom of an LP (little person) who lives in my general area of Boston and surrounding suburbs. Dwarfism is quite uncommon as it is a random genetic mutation that occurs in only 1 in 25,000 pregnancies so it was pretty awesome to learn that we're not alone and there are other (normal, nice) moms in my general area going through the same thing. I've been connecting with quite a few of these women over the past months and yesterday three of us who have young babies got together at my house for a BBQ/pool day! It was awesome :-)  It was so nice to connect in person with our babies and our husbands too... I'm feeling like we're starting a real community in our little area and I know we will remain connected as the babies grow since it will be important for not just us to be with others who understand but, more importantly, for our kids to have friends who are like them; friends who they can be with and play with and, for that day, NOT feel "different" from everyone else. 

Here are pics from our first playdate of likely many to come: Jack and his new best buds!

Friday, July 10, 2015

Jack: 3 Months

Hello poor neglected blog. Somehow I have a 3 month old! And he is AMAZING. I seriously love him more and more every day (which sounds kinda bad in my mind like I didn't love him all that much beforehand or something but whatever). I am delirious with love for this little guy. Well, with that and lack of sleep :-)

Big updates:
I quit my job. I went in for the last time to clean up and say goodbye this past Monday. It was so bittersweet. I was sad and while walking away I wasn't sure if I made the right decision or not. Then I got home and the second Jack saw me he gave me the biggest gummy smile I've ever seen and that answered my question right there. How can I NOT be home with this guy if I have the option to be?
Jack's health: He went through a phase a few weeks ago where he was screaming in pain almost every time he ate and my awesome eater went from having 4oz every 3 hrs like clockwork to barely eating 1oz before I gave up and just rocked him to sleep as the only way to soothe him and stop his crying. It was really sad and mealtimes were horrendous. Took him to doc and they suspected acid reflux. Changed formula to Similac No Spit-Up (even though he doesn't spit up) as it contains rice starch and that seemed to do the trick! He's now a total piglet.
We also stuck a wedge (aka folded-up blanket) under the head of his bassinet mattress and now he seems to be sleeping a bit better too. This has helped keep the acid down and has also helped with his snoring/gasping/waking himself up in the night. We're pretty sure he had sleep apnea. Very common with Achon. We have an appt to see Ear/Nose/Throat (ENT) doc to assess this and do a sleep study.
Also, Jack had his follow up appt with the Audiologist (since he failed both hearing tests in the hospital) and they confirmed that he does have hearing loss. Mild loss in one ear and just slight in the other. Again, common with Achon. For now we'll just continue to monitor it and hope it doesn't get worse. He will likely need ear tubes at some point around or even before his first birthday anyway so that might possibly help but we'll see if he needs a hearing aid down the line.
Finally, Jack has torticollus in his neck (prefers to always lay with his head to the same side and this is also causing a flat spot) so we contacted Early Intervention and will be starting physical therapy next week!
Things are moving along with him. Monitoring the issues we expected to come up and thankfully haven't had any unexpected things happen yet. Besides the ENT doc he also has upcoming appointments with the Geneticist and Nephrologist (kidney doc) and then his 4mo appt next month!

I've been in touch with my RE about next steps for me and Hubs regarding someday expanding our family since I suspect we will need to think long and hard about what we want to do. He did indeed suggest genetic testing for both of us and also PGD for our 3 frosties as "we can't be sure if they are genetically viable or not due to [my] pregnancy history". Ouch. I am very emotional about this. I've always thought of those 3 frosties as the completion of our family, just waiting for us. Now I have no idea what will happen. PGD could destroy them if we thaw and then refreeze any "viable" ones. We could go through all the steps (and meds) of a FET and then do PGD just before transfer to ensure we are transferring a healthy embie and then what if testing reveals we don't have a healthy one and they all have genetic issues? Would we make the decision to ::gulp:: destroy them? What if we transfer anyway and what happened to Petey happens to another little baby? I'm not sure my heart could take it. I'm not positive my heart can take ANY of this... It's a shitty shitty place to be.

But besides that emotional land mine I am doing well. My PP bleeding is still unpredictable even after being on BCPs for the last 2 months so that's fun. OB said we'll give it one more month and if I'm still bleeding we'll try a new med. Bleeding for the majority of the last 13 weeks sure has been fun though lemme tell ya! Things are good though. We're busy because it's summer and there's lots of family and friends around. Not much time to think but I am happy.

Here are some more pics of my beautiful baby. He's smiley, he can reach for his toys, he's learning to wave... He's just amazing. 3 months is shaping up to be a very fun age since he is finding ways to communicate and connect. Every new thing he does is just amazing to me. Every day I am grateful and can't believe he's ours. We MADE him. That is incredible.
Someone loves his daddy!
This one was almost the monthly update photo...

...or this one. "Who the heck is this guy?"
My little nugget back when he was 7 weeks old

And now at 13 weeks - such a big boy <3