Tuesday, March 31, 2015

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!

Friday, March 27, 2015

1 Year: Petey's Angelversary

March 27th.  It's been 1 year since we said goodbye to Petey.  I cannot believe it. I've said it before and I'll say it again: this has been both the longest and the fastest year of my life.

At this time last year I wrote in a blog post:
I'm very worried about the future... I don't know how we'll get over this and move on.  I try to remind myself that this is hopefully the hardest time. That every day will get slightly better and slightly easier and though I'll never forget, I'll be able to be myself again someday. There's no way I can picture that yet but I hope that in a year I'll be able to come back to this post and think about how much things have changed since this moment.

Things have certainly changed since that moment 1 year ago.  But I wouldn't say that I am "myself again". I find that most parts of myself have come back and I feel like a whole person again but I have changed. That is undeniable.  There is no way to have an experience like this and not be a changed person.

And today I feel bad. I feel guilty. I want to pretend this isn't the anniversary.  I don't even want to think about it.  I don't want to go back and read the posts I wrote at this time last year and feel all those feelings again and let myself remember that awful time so vividly again. I want to bury it deep down inside because there are so many conflicting emotions I am already dealing with due to our current baby: labor is imminent, we just learned Jack has dwarfism, we have so many questions and concerns about this baby's health now...  One person can only handle so much.  I think I need to forgive myself for that. I am SURE that Petey forgives me for that...

I think of him now not as a baby but as a perfect little angel who is warm and comfortable and content; who understands all of my thoughts and feelings and loves me regardless. A little angel who is always with me and rooting for me/our family and hoping for the best for us all. Maybe that's silly but that's what he's become in my mind. And it gives me a sense of peace.

I think today I will write Petey a letter. It helps me to get my honest and uncensored feelings out. It helps with my sadness and grief. It helps me forgive myself and "move on" when I am missing him so badly it physically hurts.

One year later I can say that the pain of losing a child will never go away. It does lessen. The days do get easier. But I will never "get over it".  I will always be a loss-mama. I will always miss him. I will always wish he was in my arms.

Here is Petey's butterfly (a small needlepoint I made) that now resides in the nursery. It's perched on the shelf over the chair where Jack and I will spend a lot of time breastfeeding. It makes me feel good that we are all together.  It makes me feel safe to sit under it. It makes me feel loved.

I miss you Petey.  I love you.

Thursday, March 26, 2015

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!
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.

Saturday, March 21, 2015

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.


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.

Friday, March 20, 2015

36 week check-in

36 weeks down and 3 weeks (at most) to go since they won't let me go past 39.

Wow do I feel different writing this week's check-in post...  I had intended to talk about my plight with finding good nursing bras and tanks (which, btw is a royal pain in the ass) and my ridiculous acid reflux that now has me "sleeping" in a chair much of the night.  But that seems rather unimportant now.

I don't really know what to say.  Both Hubs and I go back and forth feeling like this news of ours is huge and important and upsetting to feeling like: "What's the big deal? The signs are pointing to him being healthy and that is what is most important. He'll just be short!"  The latter is obviously the attitude we want to have all the time and I'm hoping we will once we 100% come to terms with the situation.  But we're also not naive to the fact that our son is going to face more challenges than he should have to. Things are going to be harder for him than they should be and he'll always be seen as "different". That is the part I hate.  That's not what we want for him. But we also know that we're going to have to find a way to never feel a sense of pity for him and to make sure others don't pity him either (or that he pities himself). We're going to have to make sure he always knows A) how much he is loved and B) that even though he may look different it doesn't mean he is "less than" or incapable of doing anything he wants to do in this life.

It's slightly daunting that we are going to have to somehow find a way to become Super Parents overnight. There's always room for little mistakes of course but when it comes to daily situations and questions and experiences every single thing will matter. Everything we say and do, every way we react, will affect his self-esteem and the way he sees his place in this world. We are always going to have to have the correct reaction in all situations.   We are always going to have to let negative comments and stares and children's innocent-yet-hurtful questions roll off our backs.  We are forever going to be in the role of "educator" to the rest of the world. 

But, this is the challenge we have been given. And I know we'll rise to it.  Not just because I have faith in Hubs and myself as people and as parents but also because I have faith in our relationship. It will be hard and it will be different than what we have always pictured but it will be okay. If there's anything I've learned over the past (almost) three years through infertility and loss it's that things don't always turn out how you think they will. I guess life is about adapting to the situation and finding a way to move forward in your new normal. I am not the same person I was 3 years ago (or even 1 year ago) and I won't be the same person a year from now either. But I guess that's life.

Hubs and I told almost everyone our news yesterday. And everyone has been amazing: Our families just listened, asked questions, and then reaffirmed that they're here for us and that this doesn't change a thing about the fact they love him and can't wait to meet him; our friends have rallied around us and offered support and love; our bosses/coworkers are giving us any and all flexibility needed... everyone has been great. This helps me with the attitude I'm trying to keep of: "What's the big deal?".

But there are things we'll have to change too in preparation for our son. For instance,  we learned that little people naturally have a bowing in their spine so baby items like swings and rock n' plays (and anything without solid back support) are not good for their bodies since the angle they sit at will exacerbate it and can lead to serious spinal issues.  We'll have to go this weekend and exchange certain items and find new toys and things that will be better suited for him.  And down the road it's possible we'll have to make BIG changes to better accommodate his condition. For instance: We have a lot of stairs in our house so we expect we may need to move to a ranch-style home once he starts walking; and we may need to move to be closer to specialists or particular schools; I may be a SAHM now when I may not have made that specific decision before...  All that will be figured out though. For now we are just trying to learn what we can and prepare before he makes his big appearance.

As for me, I'm doing okay physically, but I feel like I'm about to pop and it scares me. I really want to be able to hold on another 2 weeks to let his lungs further develop but I'm completely paranoid now that I'm going to go into labor any minute.  I'm so conscious of every single pain and cramp and ache and it bothers me that I feel SO anxious now.  I hope to hang on until April but I also hope my belly doesn't get any bigger. Methinks that is impossible.  Particularly because I have noticed that I have to eat substantially more lately. The last week+ I have been hungry almost all the time and if I don't eat every 2ish hours I feel really sick. The docs said he's still expected to grow about half a pound a week until I give birth so I suspect this is not going to go away and somehow my body is going to find a way to grow even more.  I wish I didn't know that I'm actually measuring at 41+ weeks.  I think that is stuck in my head now and it makes me feel like even more of an invalid than I already did.  I'm afraid to move at this point for fear of the pressure breaking my water.

Here's the pic I took on Tuesday morn just before the appt when I found out all this news:

I'm even larger now than this pic but am still holding steady at +17-18 lbs. Belly button still hasn't popped, hand swelling is out of control, and we can now add farting to the list!  Yay!

I have lots of appts coming up and it will be interesting to see how far I get before I go into labor.  For instance, will I even make it to the appt that's already been scheduled for March 30th or will I have my baby in my arms by then? I'm anxious and excited.  I just pray that when he is born he will be healthy

 ::Sigh::  If it's one thing we've gotten good at due to everything we've been through, it's figuring out how to wait - particularly when we don't know if we're going to be receiving good news or bad news.  
Fingers crossed.

Wednesday, March 18, 2015

A "little" update

^^ See what I did there? 

So the verdict is that our son definitely has dwarfism. Unfortunately, the doctors will be unable to fully determine what kind until he is born.  Technically, we could run testing to determine this - it would be an amniocentesis with a microarray - but this far along that makes very little sense since it would take about 2 weeks for results and it's likely I may go into labor around that time (more about that below) and having an amnio at this stage when my ute is full of fluid and already measuring at 41 weeks is a very bad idea and would likely cause me to go into labor (think: sticking a needle into an overly full water balloon). So even though it will be tough over the next couple/few weeks, our best bet is to just wait until he's born to see.

We talked about three major forms of dwarfism:
  1. Achondroplasia (the most common form with the least complications)
  2. Osteogenesis Imperfecta (aka: Brittle Bone Disease - often comes with many complications)
  3. Thanatophoric Dysplasia (this form is fatal)
The good news is that the signs mainly point to the 1st one - Achondroplasia. The docs said it is "extremely unlikely" he has #3, but they can't officially rule out #2 until he is born. Based on the U/S pics his bones look straight and solid (without bowing or breaks) which is more indicative of Achondroplasia so that is a very good sign.  However, until he is born we will not know if it's actually OI which is affiliated with reoccurring bone breaks throughout life, deafness, respiratory or heart failure, spinal cord and brain stem problems, and permanent deformities often requiring use of a wheelchair. Obviously we are hoping that the signs and "best guesses" are correct and once our son is born we will learn that is it the most common form.

"Common" is a funny word: According to the docs, the chance of this happening is somewhere in the range of 1 in 25,000 to 1 in 50,000.  Both Hubs and I are of normal stature (EDIT: I've discovered the proper term is "average height"), there are no instances of this in any sides of our families and no reason whatsoever to think this would ever happen. After the "fluke" that was Petey's deformities and now this, the doctor joked that we should be playing the lottery. Har har.  He also said we are an "interesting case study" (gee, thanks) as the only things he could see in common were the renal issues. (Both Petey and this baby only had/have 1 kidney but luckily this baby's one is working well whereas Petey's was not.) He said he does not know of any established correlation due to this but down the line when we start thinking about adding to our family, we will first be getting extensive chromosomal and genetic testing to see if there is anything to be found.

I can't even think about that yet though.  For now, we are just going to have to live in this place of uncertainty while trying to remain positive and optimistic that our little guy has Achondroplasia and will be able to live a relatively "normal" life just as a little person.  Thankfully there are no mental issues related to this... condition (I don't even know what to call it. Is it a disability? A disorder? I have a lot of research to do) and I will just continue to hope that any physical complications won't be too severe and we'll be able to get good help.

Regarding delivery, they've scheduled an induction for 39w but said it is unlikely I will make it that far due to all the pressure in there (mainly from the excess amnio fluid). As of now I am already measuring at 41 weeks so they are just hoping I make it 2 more weeks to 38 so that his lungs can better develop.  However, this will depend on how my upcoming bi-weekly appts go (will consist of measurements, non-stress tests [NSTs] and Biophysical Profiles [BPPs]). If he ends up getting too big or is in any kind of distress they will induce earlier. The plan is still to try for a vaginal delivery but realistically it's quite likely I'm looking at a C-section since his head may not be able to clear my pelvis. It's also possible that the best decision may be to switch hospitals and deliver at one in Boston that is equipped to deal with any emergency surgery that may be required immediately after birth.  The docs were leaning toward this being unnecessary but did agree to consult with others with more experience in dwarfism to make this determination.

So for now I am on modified bed rest with the hopes of keeping him in there as long as possible (until 39w) but I've been told that at the first sign of any kind of leakage I need to go immediately to the hospital. This is because although our son's head and belly are large, the rest of him is small, and with me having so much excess amnio fluid in such a big belly it is very possible he may not fully engage in my pelvis until many hours into labor (if at all) so there is a high possibility that the umbilical cord could be pushed out through my cervix instead and that would be a major problem.

That's all I can think of right now.  The shock is starting to wear off and Hubs and I are working on coming to terms with the fact that our family will be different than how we always pictured.  It will be challenging for sure but we just hope at this point he will be healthy. Regardless of what happens, the one thing we do know is that we are going to love the SHIT out of this little guy.

The next step (besides doing a whoooole lot of research) is telling family and friends. At this point I don't even know how to start that conversation.


Blindsided yet again

I had intended for my next post to be a big AW post full of nursery pictures. This is not that post. And warning: This is not a happy post.

Yesterday (Tuesday) at 35 1/2 weeks I went in for a "routine" OB appt. The dr found that although I had actually lost a couple pounds my belly was measuring big - really big - and decided to send me for an ultrasound to see what the deal was (she suspected too much amnio fluid).

I didn't mind that I was going for an U/S - I hadn't seen my little guy since the 20 week anatomy scan!  I just felt bad that Hubs didn't come because I was sure he would have liked to see him too.  Spoiler: As it turns out, I ended up really wishing Hubs had come yesterday.

I thought the U/S would be quick - measuring the baby, seeing if there was extra amnio fluid, and determining his position. But after 45 mins on my back (very painful BTW) watching the U/S tech measure almost every bone in his body I began to get worried. She acknowledged he had a big head for his gestational age and that there was extra fluid. Besides that she didn't say much. Once done she told me to sit tight so she could just "run the results by the doc real quick".  When she came back she gave me a sealed envelope to bring to the doc and said they wanted to see me back upstairs again immediately. I had no idea what to think and carried that envelope like it was kryptonite. 

I had to wait 15 agonizing mins for the doc and once she came in she got right to business: The sealed envelope revealed that our son has dwarfism. His head and belly are in the 97th percentile and all of his arm and leg bones are in the <5 %. (Some <3%.) There is no doubt about it.  This child I'm carrying is a "little person".  Our little miracle rainbow, our happy ending, is a dwarf.  I am absolutely dumbstruck. Yet again.

Tomorrow is 1 year TO THE DAY that we went in to see the perinatologist and specialists and learned that Petey wouldn't make it due to his birth defects. And tomorrow we will be back there again, in the same place, with the same doctors, to learn about Rainbow's birth defects. Happy fucking anniversary.  I am apparently incapable of creating and carrying a healthy normal child. I am in complete shock.

Tomorrow (Wednesday) we will learn just how bad it is - what form of dwarfism he has, if he has other issues affected by this, what the complications are, what our next steps are...  There is also the issue that based on today's measurements I am actually measuring at 41 weeks right now (no wonder why I've been so damn uncomfortable). We will need to discuss what that and the excess amnio fluid means for labor and delivery. The doc said today that at a maximum they will not let me go past 39 weeks but even that may be a stretch. It also sounds like a C-section is pretty much a given because I won't be able to vaginally deliver a baby with a head that large.  As it is, their best guess on his birth weight is 11 pounds.  ELEVEN! She also mentioned that I may need to be sent to a different hospital to deliver.

I just hope that tomorrow we will be able to get clarity on his situation. I know NOTHING about dwarfism. It is something I have never once given any thought to whatsoever. And I didn't want to google too much but from what I could find it seems it is a genetic mutation and there are 4 major forms: The most common one (the one you see on the TLC show "Little People Big World") is also the one with the fewest complications and affords the best quality of life. That is our best-case scenario. There are other forms that have more medical issues requiring surgeries, use of a wheelchair throughout life, etc., and there is also one form that is deadly. Please pray that whatever news we receive tomorrow will be as good as it can be.

Y'know, I remember saying back in the early days of this pregnancy that all I wanted was a healthy child.  (And that's true - still, the most important thing is that he is healthy.)  But perhaps I should have been more specific.

I just don't understand. Why...?  How...? I just don't get it.  Exactly 1 year to-the-day later and we're back in the same place wondering again: How can this be our reality?

Friday, March 13, 2015

35 / 35!

That's 35 weeks down, and just 35 days to go!!  I can't believe I'm here. ME.

I'm huge. I keep bumping into things now and it HURTS. I have a billion BH contractions a day.  I waddle now. I can barely turn over in bed. I can't do anything without pelvic pain. The countdown is on.  I want this baby to cook for as long as he needs to so that he's strong and healthy but I am hoping that magic time is only about 3 weeks away and not the full 40 weeks (or, gasp, MORE than 40 weeks!). I'm feeling ready.  As of today I have now been pregnant for 55 weeks without having a baby in my arms. Yeah... I'm ready.

Hubs and I have some smaller things still left to do: Putting together the swing and the rock n' play and the stroller...  This weekend we're going to install the infant car seat so we know what we're doing, I'm going to pack the hospital bag, and we're going to purchase some of the remaining items off our registry.
But all the big stuff is done.  Our house is officially ready for a baby. I even received my new, free Medela PISA breast pump in the mail the other day (thank you insurance)!

Bump pic:
I'm officially huge. Not "cute-huge", just huge.

Weight gain: 17.5 lbs

Symptoms: Pelvic pain is a way of life these days. Still puking some mornings due to MS. Heartburn, but it's manageable. Lots of swelling in hands and feet. I actually have a hard time gripping anything first thing in the morning because my fingers are so swollen I can't fully close my hands.  Just heaviness in general. Baby has dropped a bit so I'm able to breathe better but that means there's more pressure on my pelvis/colon/bladder/etc.  It could be worse though!

Cravings: Nothing.  The power of suggestion is pretty big for me but nothing really excites me these days and nothing really tastes all that good even when I eat whatever it is I wanted. That's okay though. My stomach is so squished that I can't eat much anyway so I mostly graze throughout the day.

Rings: HA!  I doubt my husband's wedding band would even fit on my finger at this point.

Belly button: Dangerously shallow! Now when I'm sitting the sides pop out a bit but it hasn't fully popped yet. I (normally) have a deep one too so I really didn't think I'd ever have an outie! We'll see!

Maternity clothes: I have grown out of many of the maternity clothes I was wearing throughout the pregnancy. Technically most of them still fit but they are tight and not soft enough so they don't have enough give and I'm uncomfortable in them. So I am now cycling through the same 3 maternity shirts plus tees stolen from Hubs (and of course my yoga/PJ pants). It's a good thing I'm working from home now. With only a handful of weeks to go I absolutely refuse to buy more stuff. Instead I'm now buying things like nursing tanks and bras (oh yeah, I also have zero normal bras that fit me right now) and am just dealing with looking like a scrub all the time.

Mood: Mostly good. I'm excited but also annoyed with waiting (and with being so uncomfortable during this wait).  And I haven't mentioned this on here yet but, as you know, it is March and March is the month we had to say goodbye to Petey.  Sometimes that's really hard for me.  I can't believe it's been a year. I still struggle with the guilt from being so excited for this little baby when Petey should have received all the excitement. I am dreading the 27th. Not only is it Petey's angelversary but also the day I will be officially full term (37 weeks) and I'm so afraid I'll go into labor on that day. It's really unlikely to happen but if it does I honestly don't know how I would handle that.

Best moment of the week: As of last Sunday the nursery is almost completely finished.  We have just a couple small things left to do this weekend but it's just about done. I love going in there and sitting in my recliner and daydreaming.  Over the past week I washed all the clothes and organized them and put them away, I have burp cloths and my boppy ready to go in the nursing area, I have diapers and wipes ready to go in the changing area... I have been busy.  But everything is ready now, just waiting for my little baby.

Bonus: Best moment of the week #2:  When Hubs decided on his own that we should get ready for bed a little early each night now so that he can rub my aching back and my legs so I don't get cramps in the middle of the night. He has seriously been awesome. I love him.  :-D

Friday, March 6, 2015

Busy, busy! 34 weeks!

34 weeks down, 6 to go (hopefully at MOST)!  Sometimes that feels like a lot, other times I freak out because technically it could be less than that and there is still a LOT to do.

We had baby showers this past week. Sunday was the big one with family and friends. It was good and low-key which I like.  Brunch foods, lots of presents, and no dumb games which made me happy. My sisters know me :-)  They also held it AT MY HOUSE which was pretty awesome because then I didn't have to pile all the loot in the car and then lug it up 2 flights of stairs once I got home!  Everyone just grabbed their own present and brought it up to the nursery before they left. Win! They also did all the dishes and cleaned up before leaving so I didn't have to lift a finger AND I ended up with all the leftovers. Best baby shower idea ever.  
My work shower was this past Wednesday and it was good too.  The theme was books and everyone brought their favorite kids book as a gift (either their own favorite from childhood or the favorite they read to their own children). So now our baby's library is fully stocked! I thought that was a great, easy idea.
So now we have a house full of baby stuff. It is like a baby tornado hit the joint. I have SO MUCH STUFF to put away.  Most of all: baby clothes. My sister gave me ALL of my niece's old baby clothes (they didn't find out the sex so most things are unisex which works out well), AND one of my girlfriends just had twin boys about 7 months ago and she gave me all of the stuff they've already outgrown! I am so so appreciative for all of this but holy crap it is just a lot of STUFF to organize, wash, fold, put away...  I'm a tad overwhelmed currently.

But the nursery is getting there!  We have most of the stuff we needed now and plan to shop for some of the remaining stuff this weekend. Our rocker/recliner has now come in so we'll be adding it to the nursery soon :-) We also ordered the one last piece of "furniture" (nightstand-type-thing to go next to the chair for breastfeeding stuff) and once that's in it will be pretty close to complete!  It will still be a bit before I post pictures though since the nursery has taken the full brunt of baby-tornado. I have a LOT of work to do...

Also this past week we had baby classes at the hospital.  Last night was Breastfeeding Success (which I don't feel was particularly helpful but did give me some more info), last weekend was Parenting your Newborn (it was fine if you like to play with dolls) and we also squeezed in the tour of Labor & Delivery last weekend so we know what to expect when the time comes. And can I just say - this hospital is AWESOME.  L&D is called the "Mom's Center" and the whole wing is just so relaxing and the staff we met are amazing. And the room. Holy crap. Correction: the SUITE!  Everyone gets their own suite with kitchenette, sitting area, Hubs gets his own pullout bed, there's a jacuzzi tub, big screen TV... the place is awesome. All meals are delivered in doubles so that Hubs eats too. And the best part of all - baby gets to room in with us as long as there are no major health issues that require him to be in the Special Care Nursery. The hospital is slightly earthy-crunchy but not overboard and they are HUGE on having immediate skin-to-skin and breastfeeding upon birth (even with C-section if at all possible). I'm thrilled. The staff will be able to do all the tests and checks while he is on my chest and they like to allow at LEAST 1 hour of skin-to-skin at that time with no interruptions expect for a nurse who will stay with us in case of any worries (and lactation consultant if I request one). 
Up until this class I really had not given too much thought to how I want my labor and birth experience to be. My "birth plan" is pretty much: labor until I can't take the pain, get an Epi, push the baby out. I'm hoping for a vaginal delivery without assistance but if there are complications then I plan to go with the dr/midwife/nurse's recommendations. And if I need a c-section, so be it.  Ultimately, my "plan" is just to have a live, healthy baby in whatever way that needs to happen. That's all I've wanted. But now after seeing the ideal, I reeeeaaaally hope everything will go well with the delivery with no major complications and that I'll be able to deliver and then have skin-to-skin time. I really want that and now I have been dreaming about that moment and cannot wait. I guess we'll just have to see how it turns out though.

Really nothing to update on the Pre-e front. I got my B/W and 24 hr urine collection results back and they were "normal" according to the doc.  Most numbers were on the high end of normal and some were slightly high (especially the protein in my urine) but I guess it's nothing to be majorly concerned about.  She just said to continue to try to "take it easy" and keep an eye on swelling and BP.  I gotta say, the 24 hr pee collection was a good time. I just loved having to play with my pee like 20 times a day after collecting it in a bedpan thingy that felt like a child's potty. Gross. I hope I don't have to do that again.

In related news, I freaked out a bit last week when I had such a big weight gain in one week but the doc must have been right about all the potential factors that led to it. I've been trying to eat less sodium this week and my weight actually dropped about 2 lbs so maybe it really was just extra water retention.  I'm now officially 16-17 lbs up which is still good for 34 weeks but just feels like a lot for me since I skipped from +11 to +17 lbs in no time at all.  Oh well.

Wow, I rambled a lot today.  I'll shut up now. Here's a parting comparison pic: