Life as a single mom

Can I just start by saying: I am SO MUCH HAPPIER.  I think this quote sums it up perfectly:

It's exactly how I feel. Now that I am out of my marriage I realize just how much it was affecting me emotionally, spiritually, even physically!  I am healthier now in all ways.

Life is harder in other ways too though: I'm a single mom. I rarely get a real break. Even when Ex-Hubs takes Jack for an overnight at his place, it still means I have him every single day - dropping him off for school on a Friday morning and then he comes back after naptime the very next day. So it is tiring. And he's 4 now.  He is... a spirited child.  He is the freakin light of my life but he is TOUGH. Incredibly strong-willed and stubborn. Incredibly active.  It is a GOOD thing and will likely serve him well in all that he'll need to overcome in life but DAMN it is hard to parent such a strong willed child. I get help from others when I can, and when I can't, I endure.  The phases will pass, I am sure.  I'm just trying to keep my sanity and my patience in the meantime.

At the same time - he is amazing. He is the most charismatic kid I know. He is SO friendly, SO chatty, SO entertaining.  He knows everyone and everyone knows him. I am very glad I stayed in this area where we were living. I found a perfect townhome in the next town over and Jack and I have been happy here.

I've been happy for other reasons too...

I met a wonderful man. He and I have been together for over a year now and are very much in love. We connected through an online forum as we were both going through divorces at the same time. We just completely clicked and it felt like we had been friends forever. After talking for a while we swapped pictures. And damn - we both knew. He is wonderful and loving and sweet and sexy and an amazing father to his two teenage children. He is is also an amazing man to have in Jack's life. He has stepped up in every sense of the word and he and Jack love each other too. I could not ask for anything more. The ONLY challenge is that he lives in Canada. Whomp, whomp. Luckily it's on THIS side of North America, haha, but it still takes him about 7.5 hrs to drive here. And he does it religiously, every other weekend.  He has his kids 50% of the time, and I have Jack almost all the time, so we get together every time our schedules allow.  It works out to being able to see each other for about 2.5-3 days every 2 weeks.  Sometimes that's hard and I do miss him, but othertimes I think it's a good thing because it allows us each to cultivate our own lives, especially since we've both been through such huge changes over the last 1.5 years with our divorces.  It also allows me the time to work on.....

My new business!!

My sister and I opened a business about 5 months ago :-)  (Yes, I am crazy.) She is a gifted energy healer and psychic medium and always has been.  So we decided to go for it and open up an actual business here in Southern New Hampshire. It's been going really well and I'm proud of us and also happy and feeling quite fulfilled with this work.

As for other things in life, I really have no complaints. I am so very glad that I am where I am in life now. All the medical difficulties with Jack really calmed down after around 3.5 years old.  He got long term ear tubes in and we haven't had a problem since with his hearing or any more ear infections.  He has rarely gotten sick over the last year, he doesn't have many other medical issues going on currently... It's been quite the relief.  We still have all our yearly check ups with his 8 specialists (let's see if I can even remember them all: Pediatrician, Nephrologist, Geneticist, Orthopedist, Otolaryngologist, Ophlamologist, Neurologist...I'm forgetting someone...) but there have been no additional issues. I know there will likely be things to deal with in the future - especially orthopedically - related to the way his bones grow, and also oral surgeries due to his small mouth and teeth crowding (at a minimum), but for right now I am feeling very very blessed.  The ONLY thing that is still an issue now is his poor sleep.  (AH! Pulmonologist! That's the last one hahaha)  It seems he is just a poor sleeper.  He wakes up many times every night. It's just the way it is.  I've tried EVERYTHING and to no avail so I've learned to adjust by trying to go to bed earlier myself and just dealing with it. It is what it is.  Someday I'll sleep again.

Otherwise, Jack is happy, healthy, active, growing, and life is good.

It is SO wonderful to provide a GOOD update here. :-)

Howdy!

So I disappeared off the face of the earth there for oooooh, a year and a half or so, haha! Whoops.

Things are certainly different since the last time I wrote!

I haven't even come back onto the blog in ages and I had to laugh reading the paragraph about things not going so well with me and Hubs. Understatement. We are now in the middle of a divorce.  It got to a point where we were just so completely disconnected, living parallel lives with him on the west coast half of the time and me and Jack on the east coast. There has been zero intimacy OR really even any affection between us for years now and it was slowly killing me inside. So in the interest of trying to maintain some semblance of self, Hubs and I both agreed we should go our separate ways. We still love each other but this isn't a marriage. We are roommates (well, some of the time since he has been traveling for work more than 50% of the time for at least 2 years now), and co-parents. (And another disclaimer on that one since I'm the one doing most of the parenting.)

So there you have it.  It is amicable, it is timely (since Jack turned 3 in April and so he will never know any different than having Daddy not really live with him and Mommy), and it is for the best.

I'd be lying if I didn't say that I do have some fear: I am now an unemployed single mom of a child with special needs. Holy shit. But things should be okay. My motto over the past year has been "Let your faith be bigger than your fear". I have been working hard at that and I'm proud of myself.  I'm sure there will be complete shit moments but overall I think it will be a good thing.  I want to have a REAL relationship (and hopefully marriage) someday, not this crumbling marriage that has just turned into a facade where we don't even care to be in the same room with one another. I want to have a partner who WANTS to be with me, and I with him, who loves to do the same sorts of things I do, and who appreciates me. Cuz I'm awesome. hahaha

I've reached out to tons of people for support and things are going pretty smoothly right now.  I'm currently house hunting as I will need to downsize. And I plan to stay in the area we've been in in New Hampshire. I realized I like it here. It feels like home now and I'm starting to integrate into the community a bit finally. Also, people are starting to know Jack. That is going to be REALLY important for him as he grows and starts school so he has a support system. Plus my sister (who is my best friend) is just one town over so that's pretty great. 

Last time I posted we were still living in the San Francisco Bay Area. After a little over a year out there, Jack and I had to come back for some medical appointments for him (all his specialists are still at Boston Children's Hospital) and he ended up needing some surgeries and procedures that stretched out our timeline. In the end, Jack and I never went back to CA and Hubs split his time between coasts. That obviously didn't help our marriage but it got to a point where I liked it better when he was gone than when he was here with us so that was pretty telling. I would say our marriage had been on life support for the last couple years and we were in couples therapy off and on, but I think we both agree that this relationship was completely dead by about 6 months ago. We officially called time of death last month and things have been okay. We're working well together (better than we were when we were still trying to make the marriage work, ironically), and we both agree that the most important thing is to put Jack first.

Hubs has moved out and into an apartment here on the east coast and I suspect he will continue to be in CA a lot of the time too.  I will basically have full custody, mostly due to Hubs' work travel, and as Jack gets older and out of his mommy-obsessed phase (please let that be soon!!), our plan is to do every other weekend so I can attempt to be an adult out in the world again at some point. I will have him all week long and Hubs would still like to come over at least once a week for dinner and bedtime together.

So... it's been a lot. It's been a tough couple of years and things will continue to be challenging for me but I think this is for the best.


So there's THAT major shitshow in a nutshell!

Beyond that, there's Jack.  And he is AWESOME. He is so funny and adorable and sweet and caring and SMART.  Everyone who meets him falls in love with him instantly. It's honestly impossible not to.

He's in part-time daycare at an early childhood education center so it's really more like a preschool. He started last Fall and since then his speech just took off. He amazes me!  And the kid has a memory like an elephant. (Don't know where he gets that because I can't even remember what I ate for lunch today.)

Physically he's doing great. He runs, jumps, climbs everywhere. He can do everything his short-statured body will allow him to do. He's no longer in physical therapy and is just a regular kid, doing his thing.

Medically, he's needed some procedures over the last couple years: adenoidectomy, tonsillectomy, 3 ear tube surgeries (#4 scheduled for next month) due to chronic ear infections, 3 overnight sleep studies...  I think those are the major points.

Thanks to the surgeries his sleep apnea is WAY better now  (he went from stopping breathing 44 times per HOUR on average (!!!) to just 8 times per hour), and many nights now he sleeps at least decently, some nights even well.  Sleep has been the hardest thing over the years because the apnea episodes would wake him up between 4-8 times per night, he'd usually start coughing and then either couldn't get back to sleep without me rocking him, or he would actually end up throwing up from all the coughing and then we were up for at least an hour in the middle of the night cleaning up, changing sheets and getting him to calm down. It's been exhausting. I am permanently sleep deprived and can't remember the last time I slept for more than 3 hours in a row without being awoken but there's really no way around it and I just have to hope and pray that it will get better someday.

We also discovered Jack has asthma so he's on an inhaler twice a day and has a rescue inhaler as well. We did have one instance about 6 months ago when we had to use the rescue inhaler in the middle of the night and learned the hard way that he was allergic to the Rx!  It was a very scary night calling 911 and waiting for what seemed like forever for the ambulance to come while he couldn't breathe... ugh. I hope to God that will never happen again.
As for the asthma, thankfully he has now grown out of the nightly nebulizer treatments as that was a giant pain in the ass and a fight every single night, but it does cause things to be REALLY hard every single time he gets a cold. When he's sick he has a very hard time breathing and so he can't sleep. Therefore I don't get to sleep because I'm up with him and then I end up getting sick too. It's a vicious cycle. (THAT is actually one part I'm apprehensive about with being a single mom - it is truly almost impossible to take care of him myself when he is sick. Or rather, I can take care of him 24/7 but then I'm unable to take care of mySELF. I will miss having Hubs there to help care for me and make sure I'm eating and drinking and able to nap when I can during those times.  That will be really hard.)

Medically beyond that, during a previous MRI the neurologist found that Jack had enlarged ventricles in his brain and they were causing issues with pressure on his optic nerves. So we became intimately familiar with the Ophthalmologist. We had to go every month for 6 months, then every 2 months, every 3, every 6, and FINALLY, MERCIFULLY we are now just at once a year. Whew, that was a tough one.  The problem is, apparently if they found anything changing with the optic nerves we would need immediate surgery because it can cause irreparable blindness. Luckily, there were no bad side effects, and as the pressure of his enlarged ventricles started to decrease a bit as he got older and his head grew to make more room for them, the worry decreased. A subsequent MRI showed that some of the swelling in his brain has gone down so we are now in good shape.

Finally, the other thing we deal with that I didn't expect is frequent hearing tests.  Due to all his chronic ear infections and middle ear fluid, he has hearing loss.  It fluctuates between mild and severe hearing loss but over the past 9 months we've now seemed to settle on mild loss in one ear and moderate in the other. Things are manageable right now and he doesn't need any hearing aids.

Phew. That was a lot to dump out here.  I'm sure there is a TON of stuff I am forgetting in all of this time but those are the major points.

Jack continues to just be the light of my life and is so much fun. (And SO challenging - three year olds are not easy!)  I have lots of changes in the works and more coming but I'm feeling good about things overall.

Now for the whole reason you're here: Picture overload time!!!

Kid loves to pinch his nipples.

Fireman Jack for Halloween

Waiting for Santa

It's fun to stay at the Y M C A

He's on the phone with Peppa Pig doing "very important work".

Loves dolls as long as they are naked.

Getting to be such a big boy.

Ok, I need to stop now. I could go on forever. He is just such an adorable little lovebug.

San Francisco bound!

Well, it's happening. This east coast gal is going to become a west coast gal in the next couple months.  Does this mean I need to retire the "ChickinNH" name? "ChickinSF" just doesn't look right...

Hubs and I officially decided he should take this promotion (it's a BIG step in his career) and so to San Francisco we go!  I'm choosing to look at it as a new adventure and maybe (hopefully) as a fresh new start.  It's no secret I've fought depression for the last few years and it was certainly a battle after Jack was born with the PPD/PPA but things are pretty decent overall these days.  I'm still on Lexapro and occasionally still see my therapist but things feel under control now.  What is NOT under control is my weight. I'm 10 lbs heavier than I was when I got PG with Jack and I've decided it's time to do something about it. I'm hopeful that this move will help me with weight loss.  I've developed bad habits that I need to break and this big life change can help me start fresh with good habits. The sun, the water, the hiking, the proximity to fresh produce and walking trails... all of it should be good for me.  And what's also good is that this will likely only be a 2 year move (tops).  The new initiative my hubby is undertaking should be completed within 2 years so if we want to move back to the Boston area then, we can. And I assume we will since we both grew up here and all our family and many friends are here. Another good thing is that we will still be able to keep a residence here in NH during that time as well since we will be back and forth quite a bit, mainly for Jack's dr. appts.  It's taken a full year to find the right specialists for him so I do not plan to move all his care to CA just to (likely) move it back to Boston again. Barring any issues arising during the next couple years, we should only need check ups once per year with most of his doctors so I will try to lump those visits together when I can and just come back east here and there over the next couple years.

Speaking of Jack medical news; he is doing great.  He FINALLY had his MRI and overall it was good news.  No compression at the base of his spine, so no surgery needed at this time. Also, no hydrocephalus found in his brain. Huge relief! They did find a potential issue with swelling of the sheaths surrounding his optic nerves though so we were referred to an Ophthalmologist for some testing.  Luckily they didn't find evidence of damage to the optic nerves themselves (that would cause irreparable blindness) but they weren't sure if this was an issue that was getting worse or if he was born with the swelling due to intracranial pressure and it's actually getting better. So we went back to the specialist a month later for repeat testing and found there as been no change.  Overall, good news. We'll need to go back again in 3 months, and Jack's Neurosurgeon also ordered a repeat MRI for 2 months from now to ensure everything is still okay as they did find ventriculomegaly (enlarged ventricles of the brain, common with Achon), and though his nerves aren't currently being compressed, one of the vertebrae in his neck juts out at a funny angle so they need to keep an eye on it. Hopefully everything will be fine.

He's doing awesome though. Within the last month he started sitting on his own and pulling to stand and we are just so proud of him. He is so happy and smiley and I am just totally in love. His new challenge as of today is trying to climb up the stairs. Uh oh.

Here are some pics of him doing his favorite things:

Swinging!

Pool time

Playing with balloons

Being naked (probably his most favorite thing).

He has such a personality and is totally a toddler now (complete with attitude).  He'll be 15 months in a couple days and I'll post the update when I have it.

We also were lucky enough to go to the Annual LPA (Little People of America) Convention this past weekend as it just happened to be here in Boston this year!  It was a really wonderful and unique experience to be able to see so many little people of all sizes, shapes, and abilities, and to truly understand that we are part of something so much bigger than just our little world. Pun intended :-P
We plan to go again in future years but likely not until Jack is old enough to start to get something out of it.  Many little people meet their best friends and future spouses through LPA so we definitely want it to be a part of our and Jack's lives. Here's a pic! Final attendance was more than 2,200 from all across the US and Canada!

In case you are wondering, we did not make it into the picture due to a certain cranky baby who shall remain nameless.

So there's my update!  In a nutshell: Jack is doing good, Hubs and I are doing good, we're about to start planning/packing for our big move, and I'm going to start focusing again on losing weight. Don't be surprised if you start to see some diet/exercise check in posts again soon!

On this day...

On this day 1 year ago: We found out Jack had dwarfism. I was 36 weeks pregnant.
On this day 2 years ago: We found out Petey had so many birth defects he likely would not make it. I was 19 weeks pregnant.

Two years in a row we were at MFM on this day, learning the fate of the child I was carrying. Crying, wondering how this could be our reality.

March 17 & 18 are loaded days for me. Last year was so surreal to be in the same place with the same doctors as the previous year. It was a huge relief to hear that there was a low chance of Jack's dwarfism being lethal but I'm not sure it eased much of the anxiety and the overall sense of doom and deja vu.  I've been dreading the days leading up to today and yesterday. I wonder how many years it will take for me to NOT have my past be my prevailing thought leading up to these days. I wonder if that will ever fully go away.

I feel ashamed when I think back to one year ago. When the OB told me the ultrasound revealed that he had dwarfism I was in shock. I was scared, I was confused, I felt cursed, I felt...disappointed. I didn't want it to be true. I didn't want to be carrying a little person. I barely even knew what dwarfism was. I just knew it wasn't "NORMAL".  And ALL I wanted was to be normal. After being "special" due to years of infertility, after being "special" due to IVF, after being "special" due to loss, and due to choosing TFMR...I was in too many categories outside the norm. I just wanted to be normal. I wanted one thing to go right. I wanted to put all of these hardships in my past and be able to say to the world, "yes I overcame challenges and it was hard but it didn't break me, and look at me now, I'm just like you - just a mom with a son".  But receiving his dwarfism diagnosis confirmed that I, and my family, would never be "normal". I could have hid my past from the world if I chose to but I can't hide this.  My son is a dwarf. A year later I still haven't sorted out all of my feelings related to that. I know that I'm afraid for what the future holds for him. I didn't want him to be different but he is. And will always be. We will need to figure out how that looks and what that means for him. But what I do know is that I love him. More than I ever even thought possible.  And I just want for him to be happy. There are so many unknowns when it comes to his (and our) future but I just want him to be happy in life.

Our lives changed forever on this day last year. And it changed forever on this day two years ago. But I'm glad to report that so far, today has been a rather ordinary day :-)

Dwarfism Awareness Month

October is Dwarfism Awareness Month!  Just as I have done previously with Infertility Awareness Week, I am using my Facebook feed to try to raise awareness about dwarfism by posting interesting info and links. I've gotten some good feedback so far, lots of interest and quite a few people thanking me saying they're learning a lot. That's exactly what I'm going for :-)

Below are the posts I have made thus far.  I'll add to this periodically as I post more. If you'd like to also help raise awareness about dwarfism feel free to copy and paste any of the below info you like!  Very few people know anything about dwarfism so the more awareness that can be raised, the better!


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October is awareness month for two causes that are near and dear to my heart: Pregnancy and Infant Loss Awareness, and Dwarfism Awareness. I'll be posting about both this month because neither are as well understood as they should be and my hope is that I may be able to provide you, my friends, with some information about them. [Hubs] and I never thought we'd have to say goodbye to our first child and we never thought our second would be born with Achondroplasia, the most common form of dwarfism. We miss our angel every day and we are thankful every day for the amazing son we hold in our arms. I hope you'll take a minute to read my posts this month!

 Learn some facts about dwarfism!

Did you know that the majority of children born with dwarfism (80%) have average-sized parents? Dwarfism is caused by a spontaneous gene mutation at conception. What prompts a gene to change is not yet clearly understood. It is seemingly random and unpreventable, and can occur in any pregnancy. That means you too could one day have a child with dwarfism!




Did you know that there is over 200 different types of dwarfism? Jack's form is called Achondroplasia, which is the most common form. It is characterized by a large head, average sized trunk and shorter arms and legs (think: Peter Dinklage aka badass Tyrion Lannister from G.O.T.).
We are grateful to have a diagnosis as it helps us and Jack's doctors know what to expect and what to watch out for. Many babies with dwarfism won't have a diagnosis confirmed for many months, even years, and some never officially receive a diagnosis at all.




Most types of dwarfism have medical complications, some more severe than others. Some common ones associated with Achondroplasia (the type Jack has) are sleep apnea, hydrocephalus ("water on the brain"), spinal compression, chronic ear infections, and orthopedic issues. We are always on the lookout for signs of each of these problems and see specialists regularly. Now that Jack is 6 months old we are beginning to notice some of the expected delays in motor skill development due to his Achon. Most kiddos with Achon will experience motor delays with things like controlling the movements of the head, sitting up, crawling, and walking, but intellectual development is normal.




Did you know that the word “midget” is considered highly offensive to those with dwarfism? This dates back to "freak show" times when little people were only seen as here for others' entertainment and not as people in their own right. Acceptable words to use are: dwarf, little person, person with dwarfism, or short-statured. But most people with dwarfism just prefer to be called by their name rather than by their condition.
Please click on the below link to learn 5 things you should never say to a little person and to get a glimpse of what daily life is like for many short-statured individuals.
http://www.foxnews.com/health/2014/08/26/5-things-should-never-say-to-little-person/





As the parent of a little person this is hard for me to read but it just reaffirms why we need dwarfism awareness.
https://lovebecxo.wordpress.com/2015/10/02/6/

There is no single treatment for dwarfism and most people with this condition and their families do not feel it is something to be "fixed". Instead, individualized accommodations such as specialized furniture, stools, long grabbers/sticks, etc., are used by people with dwarfism throughout their lives. Individuals with short stature can do just about everything an average-height person can, sometimes just in a different way. Their height does not keep them from leading fulfilled lives, achieving higher levels of education, or accomplishing career and personal ambitions. Dwarfism is not a disease and though opinions vary within the little people community about whether dwarfism is a disability, it is a recognized condition under the Americans with Disabilities Act.

When [Hubs] and I found out at 36 weeks pregnant that our child had dwarfism we had no idea what to do or what to think. We knew almost nothing about dwarfism and didn't even know that we, as two average height people with no other little people (LPs) in our families, could even conceive a child with dwarfism! We were lucky to quickly find some LP groups on facebook and were welcomed by some wonderful people into this new family with open arms. We were offered all kinds of guidance, resources, and support for which we will be forever grateful.  It was hard to wrap our brains around what was happening and that our child (and in fact our future) would be very different from what we had always pictured. One of the things that helped us come to terms with that is the following essay we were given called "Welcome to Holland":
http://www.our-kids.org/archives/Holland.html

6 Month Medical Update

I haven't posted much about Jack's medical issues so I figured I'd give an update.  There has been a lot of activity:

• Regular monthly pediatrician visits and shots
• Twice weekly physical therapy through Early Intervention
• Audiologist has administered 4 hearing tests since birth and confirmed he has "moderate" hearing loss in each ear (on a scale of slight-mild-moderate-severe)
• Nephrologist (Kidney Specialist) has seen evidence of an issue with his one kidney: a "reflux" effect where some of the urine output flows back into the kidney therefore increasing chances of reoccurring kidney infections
• Otolaryngologist (Ear/Nose/Throat Specialist) determined he may need surgery to remove tonsils and adenoids (and have ear tubes placed at the same time as he is prone to reoccurring ear infections)
• He had an overnight sleep study done at Boston Children's Hospital last week and we are waiting for the results to see if he has sleep apnea. If he does we are rooting for "obstructive" apnea as that would likely get better with the adenoidectomy, vs. "central" apnea which would be a bigger issue as that would mean his brain is not telling his body to consistently breathe while asleep
• Geneticist has referred us to a Neurosurgeon for an MRI to see if a certain area of his neck is causing spinal compression as we are beginning to see some evidence of possible nerve damage. If so, he will need to have decompression surgery on his spine at the base of his neck
• Appt scheduled with Orthopedic surgeon to examine kyphosis of his spine, bowing of the legs, and to ensure proper hip alignment

I think that's all of it. We have seen a LOT of doctors in 6 months. His pediatrician, geneticist, nephrologist, and physical therapists are through the hospital here in NH but I've asked for referrals for specific doctors (otolaryngologist, audiologist, neurosurgeon, orthopedic surgeon) at Boston Children's Hospital based on recommendations from other parents of little people. It has been quite a juggling act to get the different hospitals and doctors to interact, share info, xrays, films, etc. In certain instances we've also reached out to the skeletal dysplasia experts who work out of Wilmington, DE for second (or third) opinions. Most doctors do not have experience treating little people (and many doctors have differing opinions just to make it MORE confusing) so we've had to make certain judgment calls as parents new to the world of dwarfism on whether or not we think a certain doctor knows what s/he's doing (and unfortunately, in certain cases, they don't seem to). I've had to be "That Person" who demands more in depth information and further testing and referrals to other doctors. But it's just the name of the game I guess. In addition, we've had issues with insurance because once I quit my job Jack and I went onto my husband's insurance which has been a gigantic pain in the ass. In the last 6 months I have had to learn a LOT of new things not just about dwarfism, but about how hospitals operate, interacting with medical staff, tricks to get what you want, how to advocate for yourself, navigating insurance red-tape...you name it.  This is my full time job. Now I'm amused that I contemplated going to back to work after maternity leave.

Jack has been a champ through it all. He really is awesome. Here he is during last week's sleep study:

We STILL cannot get all the adhesive and gunk out of his hair from all the electrodes they put on him so I think we're going to have to chop some of his sweet little locks :-(

The potential surgeries (and even just the MRI) are scary for us because complications with anesthesia are common for little people.  I'm trying not to think about that right now. These days I don't think much beyond the next appointment. If I think too much I might have a hard time moving forward. So instead, we are just plugging along. This is now my reality and my new title is "super-mom" and "advocate". I'm also now "educator" since very few people know anything about dwarfism so I'm working on that.  It's interesting because I'm just learning as I go and trying to spread the knowledge. I honestly don't know what I would do without my LP (little people) groups on facebook.  They have been my lifeline and my guidance in navigating this whole new world.

"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.

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!

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

Jack: 2 Months

Jack is officially 9 weeks old now. Things are going well. Blogging is impossible these days :-(  I hope I will be able to do it again someday.

Did ya see that last one?  Achondroplasia: CONFIRMED!!!  We are so happy. It's the most common form, therefore the best understood by doctors, and comes with some of the fewest health complications. Wonderful news :-)  Jack is doing great and we have his 2 month checkup with the pediatrician on Tuesday.

I am doing well too. Big news on my front is that I've decided I'm not going to go back to work. I'm going to be a SAHM. I have never NOT worked since the day I turned 16 so this is going to be interesting for me. I'm going in on Wednesday morning to meet with my boss and give my notice. Eeep!!

Eviction date is set!

C-section scheduled for next Friday, April 10th at 7:30am (if I don't go into labor before that!)

During yesterday's appointment we discussed pros and cons of a c-section vs. vaginal birth and of delivering at the hospital we had been intending on vs. a different one in Boston that has a high level NICU.  In the end, we decided that since we cannot know Jack's exact diagnosis until after he is born, it is safer for him if we go with a c-section. Although the doctors think he should have few (if any) major complications upon birth, there are some forms of dwarfism that cannot officially be ruled out yet that could make a vaginal birth too rough for him physically (could result in problems with his spine, broken bones, etc.).  However, if I go into labor on my own before next Friday, my cervix progresses as it should and baby's head becomes fully engaged in my pelvis (this is pretty unlikely due to the size of his head), we will make the call then on whether we'll try for vaginal or just go for the CS. We are leaning towards CS either way though.  (Thank you Lynn for sharing your experiences with me to help set my mind at ease a bit!)

We also made the decision to stick with our original hospital. I feel our MFM team did their due diligence regarding consulting with other doctors more experienced in dwarfism (including the head neonatologist for this hospital who actually used to work at the other hospital in Boston that we had been considering), and the consensus is that based on the current information there should be no need for a high level NICU.  Our hospital has a level II which means they are equipped to deal with almost all major issues since the baby is full term, AND, much of the care can be done right in our suite with us as opposed to a separate NICU area. The only thing they would not be able to accommodate is long-term care beyond the 3-day stay so if that is needed we would need to be transferred. That is okay with me.

I feel better now that decisions have been made. And honestly, I'm glad that I'll be delivering at our intended hospital. I really like there, I know what to expect, I've met so many of the staff already and they are all AWESOME... I just feel better with this plan.

The head neonatalogist has fixed his schedule so that he will actually be there next Friday for Jack's birth (along with approximately 1 million other drs).  They've already warned me that we should expect a "crowd" since this is rather uncommon, but I don't care at this point. I'm glad they are focusing on us and our situation and I have no doubt they will be giving us the best care they can.  

Now we'll just see if I can make it to next Friday!  My OB keeps thinking I'm going to go into labor sooner than that (likely that my water may break due to all the pressure before I even have contractions), as I was measuring at just about 43 weeks as of yesterday. This is getting ridiculous - I look like a cartoon character.  And I feel like every time I stand up the baby is just going to fall out of me.  I also lost my mucous plug over the weekend (TMI?) so that indicates that my cervix is doing something. It doesn't necessarily mean labor is imminent but it does give me one more reason to believe I might not make it another week and a half.  Good news is that Jack keeps passing all his NST and BPP tests!!

Oh! And lastly, this Friday we are meeting with a pediatrician through the same clinic/system where I have been receiving all my prenatal care. He was referred to me by another mom of a child with Achondroplasia who lives in the area and she had only glowing things to say about him. My OB contacted him about my situation and he said he would love to take Jack on as a patient and wanted to meet with us even before the birth!  So Hubs and I will be meeting with him in a couple days. I'm thrilled there is someone right in our same network with experience with Achon!  Jack will need to see all kinds of specialists of course (likely at Boston Children's Hospital), but this pedi would be for well-child visits, shots, and routine stuff, and since this doc already has at least one patient with Achon he will know what kinds of things to look for that need to be elevated, and will understand the differences in expected milestones and growth with Jack vs. an average-height child. I am really relieved about that :-)

Ok, back to baby-watch!

37 weeks - full term!

Well technically today is 36w6d but eh, who cares? When you're already measuring at 42 weeks (!!!) I'm thinking one day doesn't make a difference at this point.

Funny story: Yesterday I had a dr appt and since I'm a house and can't breathe or move now (haha) I took the elevator the one flight up to my OB's office.  Another woman who happened to be massively obese joined me in there (like, really really large; needed oxygen, had a walker, etc.). As she got into the elevator she looked me up and down and said "You're huge!"  LOL! Ok then. Thanks, lady.

I really do look like I have twins in there now.

Weight gain: +19-20 lbs

Belly button: She's poppin'!  Half in and half out at this point :-)

Symptoms: Do I really need to mention how sore and uncomfortable I am? Look at me! 
Good news though is that acid reflux is mostly under control now thanks to 150mg Zantac twice a day.  And unfortunately, I developed a head cold over the past week which was miserable. But luckily it was short lived and is mostly gone now, thank goodness. I cannot imagine how awful it would feel to be in labor when your head weighs a million pounds, you can't breathe, and you are coughing and snotting all over yourself.   

Updates:  So as I said I had an appt yesterday. They did a BPP (Biophysical profile) which consists of a bunch of measures via ultrasound which ensure the baby's heart is fine, he's practicing "breathing" in there, has proper movements and muscle tone and is just ok in general and not in distress. He passed with flying colors!  They also measured my amniotic fluid levels again (it remained the same as last week - very high) and the circumference of his head (it grew just a tiny bit, still in the 97th %ile). Afterwards we met with the high risk OB to discuss the good results, get measured (I'm now measuring another week up, at 42 weeks, yikes) and talk about next steps.  

Our biggest concern right now is where I should plan to deliver. The hospital I was going to be at (and LOVE) only has a special care nursery and not a high level NICU.  Right now the docs *think* our son has Achondroplasia which would mean everything *should* be fine upon birth but they can't rule out other types of dwarfism that are more serious until after he's born. Therefore we could think everything's fine and then oh shit, he ends up breaking bones during delivery, or we find that he has too much compression in his spinal column and requires surgery immediately upon birth...  Overall the docs don't *think* that will happen but they also gave us a disclaimer that they aren't 100% sure. Now, I'm all for optimism and am really hoping it's Achon and there will be no major health issues but when does banking on optimism become reckless? Wouldn't it be smarter to already be at a hospital that is equipped to deal with those potential issues should they arise vs. having our little guy have to be transferred somewhere (and the two of us likely separated)?

The other thing we want to know from the doctors is if it would be safer to just schedule a c-section at this point. Again, since they really don't know what we're dealing with and if his head keeps growing it might be fruitless to try to push him through my pelvis and I'd just exhaust myself and likely do major damage to my ladybits just to have to be wheeled in for an emergency CS anyway... It just seems like a whole lot to go through if it's just going to have the same result in the end. (AND, if the docs are wrong and our son has OI trying to push him out vaginally could be really dangerous for him.)  I don't know. I really don't know anything.  I don't know what is best, I don't know how much the doctors actually know or are just saying they know, I don't know what is being smart and what is being overly-cautious...

But we really need answers to these questions NOW since I could go into labor at any time. We really can't pussyfoot around with this (yes, I said pussyfoot) because if my water breaks we need to know which direction to drive in and what to expect/what to tell the hospital!
::sigh::
Sometimes I think it would have been easier/better if we never even knew about his dwarfism until he was born. It's just making me crazy since we have no answers. BUT, if we decide to switch hospitals just to be safe and he really DOES end up needing serious help then it will all have been worth it.

Okay now I'm just rambling.  You can probably see that everything is just swirling around in my mind with no resolutions.  Luckily, the plan was for the docs to all speak to one another today and I should be hearing from one of them this evening on the consensus, or at least on their discussion and then maybe it's up to me and Hubs to make the decisions.  
One good thing (I guess) about this being so rare is that we are an "interesting case" to them so everyone's talking about us!

I've been doing lots of research on dwarfism and have joined facebook groups and made connections with other moms and gotten all kinds of info. THAT I am grateful for.  But this has definitely taken over my life. Reading about medical issues and all the different types of doctors he will need to see, and where the specialists are in the country, and what to expect, and what can go wrong... it's just a LOT. I wish I could close my eyes and wake up on the day after I give birth to a healthy little boy with Achon so that there's no more questioning, no more decisions to be made, no more waiting, no more worrying.  I just want him to be here in my arms now, and healthy.

Anyway, I'll end on a good note.  Yesterday during the BPP the tech offered us a 3D U/S.  It made my heart skip a beat as I considered whether or not to say yes because, as superficial as it sounds, I have been very worried about how our little guy looks. Now that we know he has dwarfism I know he will look different.  It sounds so stupid and I hate myself a little for even letting this enter my mind but even though he will be short - he will be a dwarf - I still really hope his face will be "normal".  That has been what has made me cry over the past week - the thought that he might be seen as ugly. It's one thing to have the added challenges your whole life due to being a little person but it is something else to be a little person who people see as funny looking or ugly or scary or something else negative.  Anyway, I said I was ending on a good note so here's the good part: We agreed to see the 3D U/S and it was such a relief.  He looks beautiful.  He looks like a perfectly normal chubby little newborn with big cheeks and my husband's nose and a sweet little chin...  Both Hubs and I broke down crying when we saw him. It was a good moment.

Here's a little wave from our little guy: Jack. We've named him Jack after his grandpa.
I cannot wait to meet him.

Welcome to Holland

I've been researching like crazy over the past couple days so I can learn everything I possibly can about dwarfism and raising a LP ("Little Person") before our son arrives.  I am so happy to say that I've already found amazing support groups with parents willing to share any and all information, events in my general area, ways to get involved, hints and tips and lots of information about all the wonderful (different, but wonderful) things that come along with being part of the LP community.  I wanted to share the below essay that got me choked up but really put things in perspective regarding our situation.

Hubs and I were definitely thrown for a loop this past week and we'll just have to see how things will turn out health-wise once our son is born but I am so relieved that, despite the challenges we are sure to face, I am feeling quite positive about our future.

   

WELCOME TO HOLLAND 

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.