two miraculous years

J is two you guys.

The baby I worried would never be 'normal' is beyond thriving.
He is so spectacular.

I mean. His nose is a tiny bit different. His spine is definitely different. But he is a wonderful creation and so sweet, smart, silly, and boyish.

He is 25%; about 12kg; about 85 cm

In the past year, J....
learned to walk
learned to not throw his food or plate
learned to USE THE POTTY 100% (by 20 months!)
learned to say mama!!!!
started running
started jumping
goes down stairs alone, but does still like to be carried sometimes
stopped nursing (did I write about this? I got him down to 1 bed time feeding over the course of a month and a half and then after about 2 weeks he decided he was done! It was so weird because I was going to hang onto that last one for a while...)
stopped taking his iron supplement and started taking gummy vitamins
fell in love with chocolate and sugar and butter and all things comfort food
developed an affinity for sockets, plug ins, and switches

Walked down the aisle carrying a treasure chest :)
loves trying to be big, sometimes too much so (grabbing for knives or scissors!)
became an expert appliance helper (pushing buttons, flipping knobs, etc)
went on a boat for the first time, and helped "drive" it
started facing forward in his car seat
got a back pack and walked into MOPS on his own!
fell in love with playing baby dolls! (he's very nurturing)
made friends
learned to give real kisses, with the smacky noise too!
learned to say bye bye
spent several nights away from me, after having only 1 in his first year of life
started sleeping in a big boy bed, and has still not yet fully mastered it (unfortunately)
learned to throw a ball and sometimes catch
not cry when he's dropped off somewhere familiar or if I leave home
is still not that well behaved in church, but it's progressing
learned to color and can do a circle
knows J is for him, D is for dad, M is for mom, G is for his sister, P is for papaw, and sometimes he can pick out a few others
can say he is "two!"
has all his teeth except the back 4 molars
has had many hair cuts

says these words (though most are not full words, nor understood by anyone who doesn't know him)
Dadda, mama, na-na (G's name), assahn (attempt at his name--heard once! but he really never tries to say it), dog, ball, book, read, grapes, cheese, please, potty, no, yes, bright, dark, lights, fan, bath, towel, pants, shirt, undies, grammy, papaw, grandma, grandpa, versions of my sister and brother-in-laws names, fork, spoon, drink, milk, juice, orange, banana, ketchup, pickle, meat, chocolate, chip, truck, tractor, boat, up, down, me, more, show, Caillou, Daniel, Peg + Cat, Elmo, bubbles

So it seems like he is doing great for talking, but really those are words that I know he "tries" to say....but they really sound very similar, and you have to know within what context he is trying to say them. And the diversity in sounds has really just come on in the last two weeks. Speech therapy has picked up in intensity and has made a difference I think. His go to sounds are duh and uhh-uhh.

In many ways he's really independent, but in other ways he's still clingy and a mama's boy. I think he's a really good balance, and I also think he's super intelligent. I anticipate this year will be even better, though I doubt he can top the amount of huge milestones from this past one (I guess talking in sentences will be pretty huge though!). His speech teacher and other who interact with him on a learning level say he's pretty advanced in most areas, it's just he speech that has to catch up. We are SO SO proud of him. And so lucky. I am in awe of all the CDPX1 moms I know who have a much harder life and a much tougher outlook for their kiddos. God bless them all for the amazing women they are.

Every year around this time, I will forever reflect on how bad things could have gone, and how miraculously amazing they have turned out.... even if my body is still screwed up. I think that is just the maternal duty..... we literally give our bodies for our children, even if we better ourselves physically....we just can never go back to living only for ourselves.

Being a mother is amazing and terrible, scary and wonderful. You all know what I am talking about. I'd do anything for this kid, on a large scale; but at the same time, I turn on the tube just for a moment of peace some days! It is all about finding the balance I think.....and I'm so much more comfortable in that with J than I was with G. I like to think that G really benefited the best from us having J. I mean, sure she doesn't get us all to herself, but that's not really healthy. She gets a built in play mate, a built in support when her parents drive her nuts, and it made me a better mom to her. Things don't get me as riled up, I'm less up tight about schedules, and less anal.

 I feel truly blessed to have the kids that I do, and will never ever take them for granted. I know in a flash they will be 25 and out of the house and I'll miss them. So even when they make me so frustrated all I can do is scream....the moment is fleeting.

Stuff on my mind.....potty, food, and Babies.

Hi, me again!
I'm so stressed on from potty training already and it's only day three. I don't regret starting, I just wish I was stronger. I did pretty well keeping my cool the first two days, but today (With my hubby back at work, and he is clearly my rock) I just lost it. I screamed so loud at J, I just feel terrible. UGh. Pick up the pieces and move forward....
He has to figure it out for himself and I have to be there to guide him...but when he pees two feet from the potty and then runs through it, slips and falls on the wood floor I feel sooooooooo angry... Not with my 20 month old kid....just with the fact of the matter.
As in.... why can't I do this for him? Please nature, just let me take the lead on this one.
If not that, Why can't he learn instantly? If he knows how to hold it, why can't he figure out how to let it go when he's on the potty and not next to it. Why did we have to do the most ridiculous things until nearly 11 pm last night just to get the kid to poop......he was holding it and I just wish I could explain to him how to relax and let it go..... UGH. control. he needs it, I wish I had it, it just sucks.
I have prayed so hard for patience and understanding. I have prayed for God to please just give me a break on this one...but I'm pretty sure God laughs and says, "listen lady, I've given you a break on nearly every other aspect of your life, you have it SO GOOD, this is your cross, bare it with grace."
OK! Thanks God. Easier said than done and you know it! There is a reason for everything. And I am a sinner. I was doing good, but now I'm human and I screamed at my baby. I feel horrible. Sometimes, though, a momma lion roars at her cubs, and ya know what? It's necessary.... but I guess they pee and poop where ever they damn well please. Thanks for nothing domestication.
For all of you out there saying, "oh just wait....he's not ready" .... go back and ready my potty training stuff with G. Same story. My kids are so similar. Thus, we carry on. I made the mistake of trying "kind of" with G and then it took 3 months for her to figure it out when we finally did go through with official potty training, so I'm not making that rookie mistake here. We set a date, knew he was ready enough, and are going through with it, my frustration and patience be damned. And if it takes 3 months anyway, well then I'll have a potty trained 23 month old and be diaper free for the first time in almost 4 years.... I'll take it. This is my blog and I'm ranting about it for a second, sorry.

Onto other things. I wanted to share a few links about food I found interesting. These are things we already do in our house, but maybe you don't know them so check them out. Eat clean is the bomb.
soy is bad for you. 
don't give your kid soy formula for the love of all things holy.
politically correct food myths
 nutrition food myths
I like this cat, I need to do more of these.

thanks to my husband's aunt who posted this article that led me to the website that the stuff above comes from.

And for my final thought, I have been in baby fever mode for a few months now. And I know two moms with kids with CDPX1 are expecting babies! And both of them are having healthy girls. How blessed and wonderful for them!! On one hand, it kind of makes me not want to press my luck since our girl came first, but then it also kind of makes me want to believe a healthy next kid would happen!

My husband and I are just a big ball of nerves and uncertainty when it comes to 'do we or don't we?' because what happens if we get a blood test done and it comes back positive for CDPX1 (or anything thing else for that matter because Lord knows there's a million things that could go 'wrong' when a baby is created).........we'd feel so terrible for choosing to conceive knowing the bad that could come from it.
But then it makes it seem like we are playing God by being too scared of the potentially bad outcome rather than trusting God to make good of whatever happens.
Ugh. It sucks sometimes, being an intelligent being with life experience.
I mean, look at the animals in nature....just reproducing without a fear in the world because it's all they know.... and if it goes wrong.....well.....that's the circle of life.
And look at the newly married couples so excited to have a baby or promiscuous teens having unplanned babies or the older couples trying desperately to conceive using whatever means necessary...........they just want the baby but haven't been slapped with reality (And I pray they never are) that SO many things have to go "just right" for that baby to turn out "normal."
So many pregnancies end in miscarriage because the cells just didn't match up. The body just couldn't do it. Something went wrong. 
So many kids are, through no fault of anyone, born different from what society tells us is 'typical.' And then there are the young kids diagnosed with cancer or diabetes or a disease no one has heard of.... and no one saw it coming.
Taking on the role of parent is one I really think too many people take lightly because they don't WANT to think about it. It's easier to think of all the happy things, because the bad things may never happen...and I definitely think that's the better thing to do. Don't plan for bad until bad happens, generally speaking, because life is too short.
But then there's little ole me. With a crappy X chromosome. So I DO have to think about it. Because that's the responsible thing to do.
How do I grapple with this? I'm sure most people would say.... you have a boy and a girl, be happy, call it quits, move on with your life. And I think that's good advice, but man I feel a huge tug in my heart for another baby. So then adopt you say.... Are you going to give me the thousands of dollars it takes? Are you going to help me get my milk back? Plus, that's kind of like taking an even bigger risk, because God love them, many kids needing adopting often have a condition that may cost a lot of money to treat or may be life long. Does that mean they are any less deserving of love? Certainly not, I'm simply stating it's a decision to be weighed as heavily as the should we conceive our own kid or not.
I guess I also hate being pregnant too, and I hate what it did to my stomach (And am still dealing with all of that mess) so if I AM going to go through it again, I'd rather just not fix it now because it'd happen again... And since I am in physical therapy now trying to fix it, I am trying to decide if I should quit PT and plan to have another baby in the future (not right now or anything, next year or the year after) or if we are just done-done, and get on with the story.... because how long does adoption take anyway? Or maybe we are just full at a family of 4.... I just don't always feel that way.
....but man potty training is a good natural birth control (speaking of, NFP is going much better this time around, thank you very much. Props to my handy Kindara app).
love to you all.

Rare Gene Disorder Day

the two CDPX1 boys in my life & my hubby loving them both

A few years ago, February 29th was deemed Rare Gene Awareness day...since it is such a rare day itself. There is no 2/29 this year, so 2/28 is the date.

J is seeming to be a mild case of chondradysplasia punctata type-1, x-linked. But who knows with these things... something might come up in the future, but we hope that doesn't happen, obviously.

He has a mutated x chromosome, that caused his extremely tiny nasal bridge and cute little smooshy nose. He also has some funky spine bones and some speckling on some other bones that you can only see on X-ray film.

His prognosis is great. He just has to be a little extra cautious with his spine, but no surgeries on it are anticipated right now. We will continue to see his spine doctor once a year to verify this. He sees his ENT doctor 1-2 times a year, as his small nose and airway is the biggest concern right now. He's been snotty all winter, and has been breathing fine (praise God)...he's just a major mouth breather anyways. His hearing seems just fine. So, again, we are really lucky.

Unfortunately almost every other kid with CDPX1 is not this simple. I feel for them and their parents... I just don't understand how one mutated gene produces such variety in affectedness. Everyone of them is making the best life for their kid, and I am in awe of how amazing they all are.

So my observation of Rare Gene Day is less about my baby J (thought I totally acknowledge his uniqueness and 'this could all go wrong in an instant'), it's more about his fellow CDPX1 brothers (and 2 sisters that we know of, thought it's even more rare for an affected female to survive!).

I am a carrier, which means I too have a rare gene... but aren't we all unique in some form or fashion ;-)

The observation of this day is more than just fluff.... check out the website here--- http://globalgenes.org/world-rare-disease-day/

ps. I think the most stressful time with J was the last half of his pregnancy and the first 3 months of his life. It was the uncertainty that was the hardest. God has a special plan for him, and I'm so blessed to be entrusted with his care and upbringing.

Nine Months Old baby J

Having a nine month old baby boy sure is fun! He's into everything, makes everyone happy, keeps me on my toes for sure.

 J is very curious. He wants to see what everyone is doing, and likes getting into the action himself. He's feeding himself, army crawling (maybe it'd be better described as crocodile crawling lol), pulling-up on almost everything (except his crib, which is weird, because that's the first place G pulled up, but his crib is taller), clapping and waving, and just being a generally awesome little man. He plays peek a boo by pulling covers up and down, he can find some hidden things when shown them first. He can put things in and take them out. He's trying to mimic some motions, so maybe signing a few things might be in his future. He likes anything with a screen, which is a sign of the times, eh.

He is super into G's fan, cords of any kind, bathrooms, doors and door stops, and shoes-especially flip flops. Sounds like a puppy to me, LOL - of course I stop him from getting those things and so that probably increases his interest in them.

He eats 3 meals a day plus nurses about 5 times a day. He sleeps from about 8:15 pm - 5:30 am, nurses, and sleeps again from 6ish until about 9 am.... give or take, usually. He takes a nap from around 1:30 pm until 4 pm. Yeah, he's a one nap baby already. And I thought G was an early 1-napper.... though I did kind of push J into one nap so that our life opened up in the morning a bit.

J eat peeled/cut grapes, bananas, peaches, carrots, cucumbers, tomatoes, shredded meat, bell peppers, squash/zucchini, puffs, yogurt bites, pumpkin, and cheerios. He's tried lots of other things, but that's what he eats fairly frequently. He loves food and feeding himself.

He kind of drinks expressed milk from a sippy, with a lot of help and a lot of it spills, but this is helpful for getting through mass. I can't nurse under a cover because he pulls it off, so nursing discretely through mass isn't an option.

He's taken several tumbles because he's really top heavy, so when he pulls up on something and then tries to creep along or transfer between objects, he falls. I can't be right next to him every second...so long story short he topples over and cries. :-( Oh well, part of being a kid, right?

Then there's G who has pulled him over on accident a few times. She has just tried to help him "walk" but it ends up being her pulling him down since he can't walk. We've had a few talks about just letting him be....

She's a super awesome big sister, seriously, I've never seen a better one. She loves on him, plays with him, helps get his food, and takes care of him as much as a 2.5 year old can. Not that I put that on her really, but she's got a maternal instinct.

J is doing really well as far as CDPX1 (chondradysplasia punctata) is concerned, at least in my non-medical opinion. He seems to hear well, but we'll have his hearing checked pretty soon. He may or may not hear exactly right though, only time and monitoring will tell there. He seems to see well too, but again, we'll keep an eye on it ;-) His breathing is fine. He snores sometimes and makes odd sounds, but mostly does great. Let's all pray he stays healthy and avoids serious illness this Fall. His bones are the main thing, and we won't have x-rays again until December when he's almost 1. His torso and head seem to make up most of his body, so I think his legs are shorter than normal, which is why I think he's so top heavy....but he's only 9 months old ;-) so we'll see what happens in the future.

I'll update his height and weight tomorrow after his appointment. He's got two teeth on bottom and 4 about ready to bust through on the top.

Love you baby boy!!

J's milestones too!

It's been a big milestone week around our house! In case you missed it, G is officially potty trained, knock on wood.

But in order to keep up with the excitement, J woke up last Monday (7/1) and decided he'd like to sit for a long time unassisted!! He first sat "alone" around Father's Day, but would topple over very quickly. He now can sit and play, sit and reach, sit and whine, sit and watch, sit and eat, you get the picture ;-) He's a sitting fool. GO him!!

Then he decided to start army crawling not even a full week later! Whew!! July 7 is when my baby boy started squirming his way toward things. It's so awesome to watch. It made me almost cry the first time I saw it, I hardly even cheered for him - I was in shock I guess! He's getting faster each day, and is starting to investigate. Yesterday it was under the pack and play, today it was under the end table and nearly to the lamp cord until I caught him!

The above video is one of his first army crawls caught on camera.


My life is moving so FAST!! Before you know it, I'll be driving around two potty trained, talking, self-dressing/feeding, friend-making, word writing, book reading, no-nap-taking BIG kids....sheesh!

LOVE THEM!!!! xoxo :-)

Half Birthday Boy

J is six months old and is doing great. He had his well child check 3 days early, and at it he weighed 17 pounds 2.5 ounces and was 26.25 inches long. His head his staying steady ay 99%, which was 18.1" around. I think that his huge head makes him look a lot bigger than he is. People comment on how big of a baby he is, but his length and height actually hover around 50% for kids his age...which means he is very average. No teeth yet, plenty of hair (he had a hair cut by me!).



about to topple over!



My sweet boy is a rolling fool. He squirms in circles, and has gotten himself into his crib rails or the end of his bed, but doesn't crawl 'for real.' He has kind of sat up, but usually just topples over. He loves books and tries to turn the pages! He also enjoys gnawing them...typical baby.

He rattles toys, rakes things in, recognizes family members, rolls over, transfer things from hands, grabs on toes (or boy parts at diaper changes...eeeek), loves mirrors and music. He's also started some stranger fear...like when my mom showed up this week, he smiled at first, then got kind of freaked out and cried when she got up close. He got used to her and it was fine later on. I think his favorite person is G...they are too freakin' cute together. So glad they have each other.

J has had bananas, green beans, carrots, and blueberry banana puree. The bananas were the only "real food," the rest have been jarred or pouches. He loves food and eating :-)

We'll keep solids as introductory for a while, and stick to nursing for nutrients. He's so great at it :-)

Sleep wise, he has good and tough days. Last night he actually slept amazing, 8.5 hours, eat, then another 2.5 hours. That was awesome. Other nights he'll be up every 3-4 hours. He is solidly on two naps now, so it means he's following in G's footsteps of transitioning early...so I expect to see him on one nap before December. That's both a good and bad thing. Good because then we'll have all morning to do stuff again without worrying about nap times, but it's bad because I lose that time to get stuff done or play alone with G.... oh well life moves at light speed!

I cannot believe how big he is getting. He's SO sweet, cuddly, and smiley. I don't want that to ever change....maybe it won't ;-)

adorable nose, thanks cdpx1

J's Birth Story

Around 23 weeks pregnant, Lake Tahoe, CA 8/2012

Everyone knows my pregnancy wasn't the most delightful experience. From about 2 weeks on, I felt this....anxiety and fear that something was, or would go, wrong. I can't explain how it came to be, just that it was there and I couldn't shake it. My mom said that being so far from family probably contributed to it. I think that's probably true. But I maintain, and always will, that I had "mother's intuition" that this wasn't a normal pregnancy. I also call it a God thing. I believe everything happens for a reason....His reason. For wordiness' sake, here's how it came to be that I delivered J at the same hospital and with the same midwife/doctor practice as I did G...even though we started out half way across the country.


My seemingly irrational fear that I would die in child birth, or the baby would be lost ---> I nagged my husband every week, if not several times a week, that we needed to get back to the Midwest before November ---> my husband said he would try ---> our 20 week ultrasound showed "abnormal" nasal structure, or lack there of ---> my fears were validated ---> we thought maybe our son had Down's Syndrome ---> my husband requested a transfer back to the home office, though he never said anything indicitive of trouble, simply that we wanted to be closer to family for our son's birth, since he would have been moved soon after anyways ---> we house hunted over Labor Day ---> Moved just before what was considered "un safe" for me to be traveling (32 weeks)

Sometime in there, you might recall, I had blood drawn for a Harmony Blood Test that is fairly new, but also pretty reliable at telling if the baby has trisomies on the 13, 18, or 21 chromosome.  It came back very low risk (1/10,000).... so we were left wondering just what was going on with our son.

My old midwife was happy to have me back, and I was thrilled to be back. I told her all about my fears, and pretty much requested an ultrasound to check on the baby. I convienently measured a tad big, plus they hadn't seen the baby on ultrasound for themselves, so she had me schedule an ultrasound for the following week. Turns out....my amniotic fluid levels were higher than 'normal.' You might recall, I slightly got freaked out because nothing seemed to be normal with this pregnancy. I had so many ultrasounds through the last few weeks of my pregnancy, I forget how many. I think like 5 or 6?

We planned a natural birth and I truly believed it wouldn't happen. Yeah, I wanted it, and I hoped for it, but again with the mother's/woman's intuition. Thus, I questioned my doula/doula's back up a bit harder about their preperation for births that go wrong, I played the what if game a lot more with my midwife, I came up with plans A-D on what to do with G should I go in to labor or have an emergency situation, and I prayed. I talked to my husband and mom about how I was feeling, a lot. I'm thankful to have had the both of them, so that neither of them took 100% of my emotions.

I tried to focus on the positive things. We were back close{r} to family. We had a home. We had all necessary supplies. Our baby was big, growing wasn't an issue. I was uncomfortable beyond all get out, but I could still move and take care of G. I wasn't on bed rest. Alleluia to that. My BFF threw my an awesome baby shower. My birthday was pretty fantastic. Baby boy was free to come any time after that.

I had practice contractions for what seemed like a month, but they didn't do anything. Once I thought things were serious, and even had plans A and C activated (my husband's cousin came over in the middle of the night until my mother-in-law could get here), but it was a true false alarm.

12/15/12 - all the excitement provoked baby boy out :-)

On December 15, we had a full day of Christmas-themed fun with my sister in town. Then my in-laws called (or texted, I don't remember) my husband to say that they were no longer going to come over on Christmas, as had been the plan, but instead were coming TOMORROW. Yeah, I about freaked out. I mean, I am super pregnant, and had plans for Christmas. I did not have supplies or plans for an early Christmas feast on less than 24 hour notice. (I know you guys read this, so don't be offended, but I really was pretty thrown off! Everything worked out, though, obviously) I called my mom to complain about how unprepared I was, and she told me that it'd likely spur the baby to be born, and I agreed that would be nice so that my father-in-law could be here (since he works a retail schedule, it's hard to pin him down). I politely-ish told my husband to inform his parents that we could go out to eat, or order in, but I was not cooking a Christmas feast. We went to bed with plans to go to church, eat out, and exchange gifts with the in-laws.

I slept horribly during both of my pregnancies. It's just how my body operates. But usually my best sleep was around 5-8 in the morning. I woke up at 6 am with this ridiculous urge to go finish the ironing, which was the only thing left on my to-do-list. As I stood in our basement, ironing my husband's work clothes, I prayed a whole lot and talked to the baby. I asked God, St. Gerard, and St. Gianna to let us both live. I prayed that if someone had to die, please let it be me, not the baby, and I told the baby how much I loved him already. I know all of this sounds melodramatic, but you guys, you really have no idea how much anxiety I was trying to suppress the whole pregnancy. Also while downstairs, I messaged my mother-in-law and told her that I felt like today was really the day, and that if she could bring some extra clothes to maybe stay the night with G, if needed...

After I finished up the ironing, I carried it upstairs and crawled back into bed. A bit later, we got up for the day and I told my husband about my feelings. Contractions picked up past the practice-feelings I had been experiencing. These started being painful enough I gritted my teeth and focused on breathing. We all got ready for church, and I had a few more contractions. They weren't stopping with relaxing or moving, so I assumed it was real. My mood around the house was kind of tense, because I didn't want my water to break. Part of having too much fluid is the concern that the baby's cord could come out first, which would basically cut off blood to the baby. It's a pretty risky business.

I am clearly an advocate for natural birth, and don't think people who have home births are crazy, but mothers with extreme polyhdraminos (what I had) are usually turned away by home birth midwives, or atleast they are by the ones who know what's best. Things can go bad really fast....but everyone kept telling me how rare that is, and how I shouldn't be worried, and blah blah blah.

The truth is, with G, I wanted to avoid the hospital for as long as possible, but with J, I needed to be there when my water broke, for safety's sake. My worst fear was that the baby would die waiting for an ambulance to get to my house if my water broke and his cord prolapsed. My midwife, at one point, told me that babies can "survive" like 8 minutes or something before things go "drastically" wrong.... so an ambulance would be almost a gamble too. Knowing all these things, you probably think I should have had a scheduled C-Section to pull J out before I even went into labor...but even now, looking back, I would NOT have chosen that method. I'll tell you why in a minute.

12/16/12 before church. I forgot just how huge I was

Alright back to the story. We all got ready for church. During driving the short, 9 minute drive to church, I had a painful contraction. While in the parking lot, I had another pretty painful contraction, that I'm still able to kind of talk through. My sister or husband, I forget which one, said maybe we shouldn't go into church. I said that we were there anyways, and I didn't want to miss Mass. Plus, it's nice to distract yourself from labor by staying busy or focusing on other things.

Although I had crazy visions of my water breaking during Mass, and screaming "is there a doctor in the house!?" I felt called to make it through mass. The contractions definitely picked up during Mass, and I was kind of patting myself on the back for making it through, without too much distraction to other people. After church, in the car, I informed everyone that this baby was in fact, coming today. There was no going back. My in-laws showed up at our house not long after we got home. I think they were pretty excited, but also unsure of what to do, or so it seemed to me. I requested Panera for lunch, it was the only thing that sounded good. Half a Turkey Bravo and a cup of Sonoma Chicken Stew, with whole grain bagette for a side. {Panera, if you are out there, feel free to send me free stuff as a token of your appreciation!!} A few times during lunch I shot up out of my chair and hurried to our powder room, that's just around the corner from the kitchen / dining room. I didn't want everyone, primarily G and my father-in-law, to watch me deal with increasingly painful contractions. After lunch, we told our doula to head to our house. In between lunch and her arrival, we did the gift thing :-) Then she went down for her nap.

I was super grateful when our doula arrived. She came up to my room with me. I told my husband to stay and chat with his parents, since he hadn't seen them in a while, and our doula was getting paid to help me ;-)
Looking back, I feel like I pretty much rocked labor. I mean, I was breathing through contractions. I was avoiding focusing on the negative. I was "hunkered" down in my birthing mindset. I think there were a few times I questioned whether it was time to go or not...and our doula told me that I would know when it was time. I was also worried that if G woke up from her nap, and I was in contraction pain, she'd freak out, so I kind of wanted to leave before she woke up....but I also didn't want to get there too early (like with G, I got there and I was at two cm dilated, even though my water had broken and I was seriously sure I was dying of pain).

I forgot to say that I started loosing a whole bunch of mucous earlier in the morning. Like a lot. I thought I had lost it earlier in the week. Well, there was a ridiculous amount more. And it kept coming throughout the day, but never amniotic fluid.

So, contractions were pretty regular, but never "by the book." I know they are supposed to get longer, closer together, etc etc... But mine kind of just did their own thing...just like with G. I knew it was real labor, though, because they hurt like a motherbear, and they weren't stopping. They were achy, stabbing, and crampy all at the same time. Some were longer than others, some came closer together, almost on top of each other, some took a 10 minute break. Whatev.

I talked with our doula between them, and tried to bounce/roll on the birth ball as often as possible, but I kept feeling SO much pressure. I was dreadfully uncomfortable, but managing. I had thoughts of, "this isn't THAT bad" and "I can do this" but also thoughts of "ouch, ok, this sucks" and "let's just get this over with." I made myself sit on the ball more often than I wanted to, because I knew it would move things along. I also finished packing. (Things were mostly packed, I just had toiletries/camera/last minute things to add) When the contractions were really bad, leaning over the bed was the most comfortable I could get.

I was much more aware during this labor. During G's I was in HELL from 11 pm until she was born a bit before 9 AM. It was just a full-steam-ahead-train of pain. I think it's became my water had broken. With J, it was a bit easier. It was more mellow, and I was more mellow. My body knew what to do, and I had a large cushion of fluid. That's not to say it didn't hurt. It did. But it wasn't hell.

Around 4ish, we moved from the bedroom to the basement, so that G could get up from her nap, without seeing or hearing us. I remember I had tried to turn on Whitney (always made me laugh), but couldn't focus since the contractions had ramped up, so it wasn't worth it. I think the move down two flights of stairs kicked things up a notch, because we weren't downstairs very long before I officially decided it was time to go.

Here's the most asinine part of the whole story. I had my husband called the midwife office, and God love him, but he got something all screwy, or the call service did, or they both did. I don't know. It took forever to figure out who was on call, that I was in fact in labor, and that I requested a midwife. I think part of the problem was that the doctor on call had the same last name as my midwife, who was not on call (a different midwife was), and my poor husband was probably frantic because we were having a baby. I definitely was at that moment, anyways.

Things got straightened out. The car got loaded. I choked back tears as I tried to tell G good-bye, because in my heart-of-hearts, I feared it could be the last time she saw her mother. She was fairly preoccupied with her new Christmas toys, though, so I was a little bummed about the lack of attention she gave me, but it was for the best.

I felt a lot of relief the second we got to the hospital, because I knew that if my water broke, we were in the right place to handle it if things went wrong. I just felt a lot better.

My husband dropped me off at the front door, which was a nice change from with G...when it was the middle of the night, and we had to go in the ER doors. My husband and our doula got inside, and we took the elevator up to the third floor. I was actually pretty excited at that point. Things were going so well, I allowed myself to feel good.
Triage was a whole different experience this time. First of all, I could talk. I moved without dying, and I actually made light of the whole situation. With G...I swore I was about to have a baby and I was only 2 centimeters dialated. So with J, I about fell out of the bed when the triage nurse told me I was a 6. a SIX. Holy cow. My life was instantly better. I got admited automatically-sweet! We mosied down to the same room where G was born, and I was pretty thrilled that J and G would be born in the exact same place. How fun. Oh, best part, the triage nurse had a Mary necklace on. I asked if she was Catholic, and she was. Another plus for my night.

It was like 6 pm at this point.

The midwife on call was the only one out of the four that I hadn't got around to seeing--she was new from the last time I had been there. Turns out, she is absolutely amazing. They got baby boy on the monitor for a 20 minute strip and then I was free to move around. So different from G. It was soon time for a shift change, and things were slow--although after we came in, tons more moms did and they actually ended up filling up!

My husband, doula, and I went for a lap around the LDR area. We handled a few contractions on our route. Then we got back into the room...things were ramping up. My midwife was actually in the room as much, if not more than our nurse. She helped me through contractions, and was really like the leader of our team. She was all about making my labor easier, and wanted us to achieve the birth we wanted. She was really sweet and compassionate. It was exactly what I needed this time around. My original midwife, who delivered G, is less sweet, and more direct. She was exactly what I need for that birth. Things work out.

At some point, I'm 9 cm dilated, my midwife is rubbing my ankles, and we are pretty much ready to have a baby. But my water hadn't broken at this point. My midwife (And I) didn't think it was possible for baby boy to be born in his amniotic sac...there was 33 cubic centimeters of fluid in there. The most likely outcome would be that it would burst during a push, and a scary situation could happen at that point. So she suggested putting a small hole in the sac to let some of the fluid trickle out, as she guided baby boy's head down...because he was still really "floaty," as she called it.

This midwife is probably the best I'll ever encounter, and if you live in the metro area, I highly recommend her. She did everything right.

She proposed the above plan, but also called the doctor on call from the practice. She wanted to have him on stand by, because it was, at this point, kind of a crap shoot. She was confident we could still have our natural birth, but she said that she is the kind of person that likes to have "her ducks in a row, but not need them, rather than the other way around."

The doctor came in to size up the situation. I have never had a male OB/GYN, and I was bummed the doctor on call was a guy...but oh well.

He was pretty worried about how "floaty" baby boy was. By floaty, they meant that I was basically ready to have a baby, but that baby was bouncing around in his fluid too much for it to be a truly safe delivery. Sometimes he'd be "engaged" and ready to come out, but then a little bit later, he'd be back up high. The midwife and doctor both thought that the water really needed to break. Controlling the breaking of the water was the safest way to ensure J survived. It was a concession I was willing to make at this point (my birth plan had asked to avoid artificial breaking of water).

The small hole that the doctor put into the amniotic sac, allowed some water out, but then basically plugged itself back up. They ended up breaking the water completely, while one of them pushed at the top of my uterus, attempting to keep baby boy down, and the other "guided" his head down. I was fairly out of it at this point, because the pain was excruciating. I think I was crying, and I was definitely yelping in pain. There aren't the appropriate words in the English language to describe just how freaking painful this all was. I don't know how long this went on, but it couldn't have been that long...

The next thing I knew, I heard "emergency" and "now" and "section" and beeping from the machine. I asked what was wrong...and they said that baby boy's heart rate was dropping and his shoulder was now into the birth canal. My midwife looked at my sternly and said the words I had been waiting to hear for months. "Kaylene. We have to get your baby out. now." I was crying, but bit my lip and nodded. I said. Ok. Ok.

Through sobs, I told my husband how much I loved him. I told him he was a great dad, and he could raise the kids by himself. I told my doula that her job was to make sure G knew how much I loved her. I was scared to death. It was the most surreal feeling. I know people have c-sections all the time, and don't die. But the way this went down was so, so fast, scary, and unplanned.

I was wheeled out the door and into the operating room, which was right next to my room anyways. I will never forget the next few minutes, and I don't feel it's necessary to share. But I was subjected to even more excrutiating pain, while I begged them to keep me and the baby alive. The anestiologist assured me they do this all the time, I'm in good hands, blah blah blah. I was alone and I was scared, so thanks but no thanks. I made my peace with God. It consisted of me saying, Lord forgive me for my sins, I tried my best, please let me go to Heaven, bless my kids and husband and family. Then I was out.

It took them 8 minutes to get J out from the time I was wheeled out of my room, my husband wasn't even scrubbed in by the time J was 'born.' He got into the room just as they were getting J under the warmer. There had been a NICU team in the room, but J's apgar's were 8-9-9, so they dismissed him as perfectly fine and went on their merry way.

fairly new

I wish I had a picture of the first thing I saw when I woke up. I know first I moaned in agony, and then caught a blurry/groggy glimpse of my husband who{seemingly} had teary eyes, half under a blanket. I asked how the baby was, they said he was fine, and that his dad was holding him....relief. A few weeks prior I had confirmed with my husband that if we had to have an emergency c-section, that he would hold the baby skin-to-skin as soon as possible. I was so relieved he remembered. That image will forever be etched in my memory. But I was also in horrible pain that no medicine would ever fully take away.
Very shortly after waking up, they brought J over to me to nurse. My husband had been letting him suck on his pinkie until I was awake....I remember the look on my husband's face when he came over to me...it was one of relief and love. He said, "he's hungry!" I did my best to nurse J, but it was not the start I had hoped for. But it was certainly better than the negative outlook my anxiety had prepared me for.

breastfeeding is really important to me, and to J. I'm sure it helped him in those early minutes. I'm extremely proud of this precious photo. Sure, what's implied is personal, but honestly, you see more in certain advertisements these days.

late night snuggles on me 12/16 - 12/17/12

J was with us for a day and a half before being taken to the NICU

We got into our Mother/Baby room and the rest is history.... My road to recovery was quite long, complex, and painful. J was sent to the NICU for monitoring since he breathing was labored at times. He nursed great, though, it was just exhausting for him to eat and breathe....but he has made it great thus far. He was diagnosed with Chondradysplasia punctata based on clinical and radiology findings while in the NICU.

We were all home in time for Christmas.

Headed home 12/22/12

---So even now, I wouldn't go back and do a pre-scheduled C-Section. It is my belief that J benefited greatly from the stimulation that labor and nearly being birthed naturally gives to a baby's lungs. J's breathing situation is already a bit challenged thanks to his small nose and nasal passages, so going through labor is definetly helpful for encouraging his system to mature up to life-sustaining-levels. Things happened just as they were supposed to. Sure, sometimes I get bummed that it didn't go naturally as planned...but my labor was natural and great. J's birth was completely reliant on modern medicine, and without it he'd be dead and I might have been too. God wanted him here, and gave him quite the dramatic entrance.

J at 4 months

Just a quick little update about the cutest nosed member of our family,

J is 4 months old now, and very very alert. He's super into watching his big sister, or any kid for that matter. He has rolled both front to back (3/17) and back to front (4/8). He does mini-push ups. He grabs for toys. He loves gnawing on things, so much so that we wonder if he's teething.
J does not like to nap, or at least he's great a faking like he hates it. He sleeps pretty good at night--usually a 7-8 hour stretch, eat, sleep for another 2 hours or if I'm lucky, longer.

He's gone for several chariot rides, and as long as he's fed, changed, and cozy...drifts right to sleep. Same for the car.

He's had a few play dates, now that we're out of flu season...though they've really just been for big sister, G.

He still nurses like a champ, and I'd say he does that about 5 times during the day, 2-3 times at night.

J had his 4 month well child check yesterday and weighed in at 14 pounds, 13 ounces. He was 25.5 inches tall, and his head is 17.5" inches around. That puts him around 39% for weight, 60% for height, and 99% for head. These are incredible stats for someone with CDPX1. We are so blessed that he's growing and hitting milestones. We haven't heard back on his bloodwork that's supposed to identify where exactly his genetic mutation/deletion is...I'm getting a bit antsy on that. I plan to call by the end of the week, though I know our counselor will call as soon as she hears something...

J and the Ortho, general spine outlook

Yesterday we went to the orthopedic doctor, who specializes in spines, at our children's clinic.

I had taken J to get some cervical spine x rays early in March, so the good news there was our appointment was much less painful than if we had had to do that too.

I knew going in that his spine wasn't in horrible shape because the radiologist report came back super fast and the genetic counselor called me that day to let me know that it didn't look bad, not great, but good considering his condition.

And that was pretty much the word yesterday. "Considering he has a skeletal dysplasia, his spine looks really really good!"
I feel kinda of blah about that because there's another * to his life, "good, but..."
I know it could be way worse, so no complaints, just meh.

His neck bones have some misshapen pieces and some good pieces. His spine has a good deal of speckling on it, and I finally understand what that means enough to explain it to you. There are spots on several of J's bones that never hardened into bone from cartilage, which is what all babies start out as before the bones harden en utero. So his genetic make up has a faulty piece that forgot to tell certain pieces of his cartilage to turn into bone. Most visibly, his nasal bridge.

The doctor said that if we could pull J's spine from his body and look at it, we wouldn't think it looked different from any other skeleton. It's on x ray and other imaging reports that we see the difference because that's where you see cartilage look different than bone. I think. Haha...bare with me as I try to explain a super rare condition in plain English.

So the prognosis is that there seems to be good enough space for his spinal cord to continue having freedom from compression as J grows. That's vital to continued use of his limbs and trunk, and also important for feeling, no tingling, no pain, etc... It also is a "wait and see" situation to see if he'll develop scoliosis. Which some CDPx1 kids do. The doctor also said his height situation (little person or not) will remain to be seen. For now he is hovering average length, but I guess that could drop off at any time, so more waiting there.

For now, we just support his head and neck--don't let it flop around. The doctor was very impressed with J's improved head control, and that he's meeting normal milestones.

J won't get to play contact sports or do much dare devil things...if he knows what's good for him... Which still leaves some athletics, but not the dangerous ones, like soccer or water skiing or football. Just running, swimming, bowling, fishing, etc. Which those are super fun anyways...just gonna be tough explaining to a little boy why he can't do those other ones. Especially coming from a paternal family of water skiers.

Anyways, so the appointment was shorter than expected, so my husband and I utilized the babysitter time to go get a treat. Not that our guts need it, but it was a nice little date courtesy of groupon. Before, taking a baby out with us wouldn't have been considered a date...but with two kids, having the baby at a frozen custard place, definitely seems easy enough to call it a date. Oh how things change ;)

Milestone!

Peace out cdpx1, we're breaking out!

J at two months + baptism

A brief post, since I am a week late... J is actually 10 weeks old today!!

2 months, 1 day old, on the way out of his baptism

Can.NOT.Believe that it has been "so" long since he was born. He's a sweet boy who loves to smile and coo and is starting to make even more fun sounds. He is rather fussy sometimes, and I think it's related to his belly being upset or being over tired, so I believe his nature is actually quite pleasant over all. He is pretty alert, and it's my "expert" opinion that he's mentally advanced, but physically behind. I'd imagine that has to do with that pesky CDPX1. His breathing is stable, and generally noisy. He has had some stuffy nose stuff lately, but not too bad, even though his sister has a cold. Thanks breastfeeding!
He has a 100% head size, and is about 50% for weight and height, though most of his weight is his head and most of his height is his torso...so we'll see how all that potentially short stature stuff works out from the cdpx1.

weight - 12 lb, 5 oz
height - 22.75"
head - 16.9"

He hasn't accomplished many physical milestones, but he has done many social ones. He recognizes our faces/voices and favorite toys. He has started trying to suck on his hands. He squirms a good deal on his back, and gets his legs up under him on his belly. He has not rolled over, and doesn't really lift his head.

I'm proud to say that last night he slept from about 8:30 to 4:15 am and then again from 5 to 6 and 6:15 to 8:30. Holla!!! We'll see if that keeps up. He has consistently been sleeping a long chunk of about 6 hours then a few more hours after eating.

His third synagis shot will be this week, and he got the DTAP and HIB shots last week. He will have blood drawn (real style, not the heel prick) for his genetic test and xrays for his spine soon...this crazy snow weather is dampering my plans to get out for those!

His favorite things are being diaperless/naked. I think he'd be that way 24/7 if it wasn't too cold, and I didn't mind getting peed on! He loves nursing and also enjoys a warm bath.

In just a short time longer, he'll be three months old!!

J behaved perfectly at his baptism (not so for G at hers). He slept most of it and was happily alert for pictures :-)

The little mister

Craniofacial Clinic

The Craniofacial Clinic trip was pretty successful, and generally had good reports. We got there a bit later than I had wanted, but I had forgotten to account for rush hour in the morning...we weren't late though, so that's a victory. We were up a little after 6, and out the door around 7:20 am, with no time to stop at S'bucks...bummer.

We had to wait for about 45 minutes before we saw anyone, because it's a first come, first serve order. We did have a light/continental breakfast provided, so that was a nice feature.

In that time, I walked around with J in the Beco to keep him asleep, but then decided I should nurse him before he got grumpy while seeing the specialists. While I was nursing him, he had a super smelly/messy diaper and needed a new outfit. At least I had over-packed the diaper bag, and had plenty of everything.

The first person we saw was someone who makes sure we have a way to pay for things, and know about all of our options for financial assistance. Thankfully, we have great insurance and good enough means, so that was a short visit.

Then we went straight to the orthodontist and speech people. The orthodontist had a surprisingly good outlook for J's jaw. I was a bit worried that his bite would be messed up due to the absent/tiny nasal bone--I thought it may have affected his upper jaw's development. The orthodontist had a similar suspicion just from looking at him, but when he felt in J's mouth (including coaxing him to bite down), he was happy to report J's jaws appeared to have a "good relationship." He said we won't know about the typical crowding problem many kids have (why many 'need' braces) until he is older, but as for problems right now--he didn't see any. I attribute some of this to breastfeeding. Not only is it great nutrition, it helps the mouth and jaw finish developing properly after birth... though I know there are some jaw problems only surgery can fix, and to have avoided those, I'm very grateful.

The speech pathologist informed us that it's likely J won't have any speech issues related to his small nose and nasal passages. He might pronounce N, M, and the "ung" sound differently (as if he has a cold)...but he might not...and definitely wouldn't after his nose surgery. Those are great things to hear. They were all really nice, so I picked their brain about G and her bit of a speech delay, but I'm not really worried about it. As I've mentioned before, I truly think her issue is that she's so far advanced in other areas... She's talking better than ever and has tons of words, but isn't saying phrases yet, and still says "duh-duh" for a lot of things, rather than the word. Anyways....

Then we went back out to the waiting area. J was hungry, so I nursed him again, and changed his diaper. He got fairly grumpy, but ended up falling asleep as we went to see the child development psychologists. There wasn't much to talk about yet, but I did treat them like a regular ol' counselor to get some things out there... especially how I felt guilty for burdening my husband with all of my emotional stress, and yet he doesn't seem to reciprocate much. He swears it's fine and that he's okay with it all....so God Bless him for that. The psychologists were also good for reassuring us that J is pretty much a normal baby--just with a special nose and rare genetic condition. He's doing all the right baby things. Hooray. They also told us their role in the future...preparing us mentally for surgery, preparing J for it when he's older, and also giving us/him tactics for combating any social issues that might come up since he doesn't have the most normal looking nose.

After another brief wait, we finally saw the man of the hour...J's plastic surgeon and ENT doctor--Dr. A. We really like him, and he maintained that J is doing super awesome, and we just need to push off surgery to as close to kindergarten age as possible.

He said that he's consulted with his previous professors and colleagues in the same line of work, and reported that they all agree with waiting until around 5 or 6 for J's surgery. He also said that J's situation is so rare (the severity of his nasal abnormality with no other pressing issues), that doctors really only see 1 or 2 cases in their entire careers. He said that, of course, we are welcome to search out a second opinion, but that he see's no need to do surgery any sooner than age 5, unless J has some reoccurring illnesses that larger nasal passages would prevent, or if he takes a turn for the worse. One of our biggest fears is J ending up with a tracheotomy, but both the NICU doctor and Dr. A feel that's not even an option unless something completely crazy happens. Dr. A made it sound like we'd just do J's nose surgery sooner, if needed...but he's still optimistic that J's in great health and has natural survival mechanisms that are really good.

Dr A. also said that J's developing a flattening spot on his ear, because he likes to lay on one side more than the other. He gave us some 'physical therapy' type things to do to stretch out his neck muscles and encourage him to turn his head more. I don't think J likes it very much, because he sure has cried a lot whenever we've tried to do it. I don't want him to have a messed up ear too, so we are trying...but we are being less adamant about it than I think Dr. A intended...but in our defense, J's already started turning his head a lot more. He had awesome tummy time yesterday and is freely turning his head better already.

After Dr. A, we were done with our marathon morning, and will go back to see him in regular office hours when J is 6 months old.

The hardest thing in all of this is that we keep hearing good reports, but I'm so scared to be happy about it. Yes, of course it's good news....but it's also scary to know how quickly it could go bad...or that there are tons of ****'s (yes, but or in case of or unless there's or if this) when it comes to J's health. So, yes, we heard all good news at J's doctor appointments, but it's still a proceed with caution situation. Praise God things are so positive right now, and prayers that they continue to be.

I'm a lucky mom, with two sweet kids

NICU and Midwife Follow-up

Last week my mother in law came into town to watch G while J had two big appointments. She also watched both kids while I had my 6 week post-op appointment. I think she enjoyed spending time with the grandkids, and we really appreciated the help.

First up was J's NICU follow-up appointment. It was surprisingly more informational and meaningful than I thought it would. I had down-played it so much in my mind, mostly because he was only there for 4 days, that I told my husband that he didn't need to go. While it's not bad that he wasn't there, I do think he would have preferred hearing the info straight from the doctor and nurse. My bad, honey.

J's genetic appointment

Today was a big day. Since J's brief stint in the NICU, January 24 has been THE day in my mind. Our first appointment with specialists. Between December 22 and January 24, J's only goal was to grow. My goal was to get better. We accomplished those things, though he did better than me. I'm still not 100%, but I'm getting there...more often 2 steps forward, one step back, but isn't that how these things usually go, especially for hardheaded women like myself.

So back to J.

To be brief, J has been clinically diagnosed with chondradysplasia punctata. That means that he has a genetic abnormality affecting the way some of his cartilage and bones grow.

This is a very varied disorder. Some people can be affected genetically, but show no symptoms. But then, some types of the disorder are very fatal (usually within the first three years of life).

They think he has type one of CP, but are ordering a more specific gene test to know more. It's x linked, which means that I am most likely a carrier. It's a small possibility that J's genes mutated on their own... But not likely.

I'll write another post soon about the implications that whole "x linked" thing has for my family....

J is thought to have a fairly mild case either way. So that's "lucky." It is mostly more "waiting and seeing"...

He could be of short stature, he could have mental disabilities, he could have hearing loss, he could need surgery....or he could not.

The main thing is to treat his symptoms, and the main symptom is his small nose...which regardless of type of CP, has the same plan; avoid getting sick at all costs (most recently in the form of a $2400 shot and living the life of a hermit)....
As I have said over and over again...he cannot afford to get sick. Not only would it certainly spell h-o-s-p-i-t-a-l, it could be fatal if we didn't get his nasal passages opened quick enough. Upper respiratory infections are hard on all kids, but kids with congenital abnormalities there are even more at risk for complications.

So aside from J's nose sitch, his other symptoms are little calcifications on some of his bones that aren't hurting much that we know of. He's got a teeny murmur that is "trivial" and he's cute as heck.

That's all we know for now. Praise God.

Next week we go to a special craniofacial clinic, where we'll see several specialists. We'll learn more about our plan for J's health outlook, development, and hopefully goals to obtain. We'll see his nose surgeon, an ENT, speech therapist, social worker, and one other I forgot.

We also have his NICU follow up next week, which I think is just a weight check plus general, "how's he doing at home" kind of a thing.

Speaking of weight, he is growing like a champ!

He was 10 pounds 15 ounces today, which they said is 60-something percentile. He's just a bit over 21.5", which is less than 50%...but I forget the exact number. His head is 91 percentile. Boom, he's a genius ;-)

He continues to nurse well, his sleep is hopefully improving, and is truly waking up to the world. I had some precious snuggle time this morning full of coo's and happy faces. He's a doll (as long as he's not fussy from gas or reflux).

Aside, G did great with the babysitter, who seemed super sweet and a good fit--she even put the dishes in the dish washer :) (and abided all our germ-freak rules)


Explanation of the genetics, as explained by our genetic counselor today;

Our DNA is a recipe book. J's recipe book blood test looked just fine, all recipes were in order (genetic lab came back normal, all 23 pairs there).
Our chromosomes are like the recipes. None of J's recipes were missing any sentences (micro chromosome array came back normal, nothing missing on the 46 pieces).
Finding the genetic abnormality for J is like looking for a misspelt word in the "X" recipe (specific ARSE gene test on the X chromosome).

That's an analogy after my own bakers heart :)

Thanks for the prayers and thoughts. There're kids with a lot worse problems than J, we just have to be very cautious right now during cold and flu season because his tiny nose and nasal passages are a big deal for breathing. We are lucky to have such a minor worry in the big scheme of things. God is good.