Can't go there yet

30 weeks + 3 days, 13 weeks + 5 days post rupture, day 5 in hospital (again).

Thank you for all your lovely comments urging me to have a 'donate' button. I will take your opinions under advisement and will let you know what we decide.

In other news, I saw the Neonatologist today. He didn't say anything that I didn't already know, except he informed me that the initial septic work up for Acorn will include a lumbar puncture. I knew they would draw blood initially to test for infection, but I didn't expect they would do a 'complete' septic work up which includes blood, urine and an lumbar puncture (spinal tap). I'm a little saddened by this info...poor guy, having to get poked in the back on his first day of life...but my mom and my husband were very upset hearing this.

I keep having to remind myself that they aren't used to the NICU. They don't know what happens there. While a complete septic work up isn't fun and it can be kind of painful, it might not be the worst thing Acorn faces. Yes, we are hoping with all we have that Acorn has a fairly easy course once he arrives on 'this side' of the world. But what if he doesn't? What if it's worse...much worse? I'm a little nervous I'm going to have to be the 'strong nurse' and reassure everyone that while the care Acorn is getting might look barbaric, it's for his own good. I might have to do this while also crying inside about how sad I am that it's MY baby having those things done.

This is all assuming Acorn lives of course. I still haven't cleared that hurdle in my mind. As much as you guys are urging me to look at baby stuff in my acres of spare time here (and I do have acres of it), I just can't. I checked out a few car seats today...and I couldn't look anymore. The hurdles we still have to face seem so HUGE. I feel like a fraud checking out baby items as if I might get to use them. I actually still feel a bit like a fraud calling myself 'pregnant', which I know is stupid because I'm over 40 inches around at the middle, I can feel Acorn kicking as I type this, and I can't see my feet when I stand up. But in my mind, pregnant people have every right to assume they will be bringing a baby home and don't have all the scary acronyms attached to their file like I do. I can't go there yet...I don't think I will let myself really believe Acorn's real until he or she arrives and cries and does well.

It's hard and I'm tired. I'm more tired and it's harder being at the hospital. I can't pretend things are 'normal' while I'm here. I can't fake it as well. I hope the time passes quickly. I hope we're heading to a rainbow instead of another storm cloud.

If you've had a pregnancy after loss, did you find it hard to imagine bringing home a baby (even if things were normal and progressing well?) When did it finally feel 'real'?

Should I Stay or Should I Go?

SHOULD I STAY OR SHOULD I GO? (The Clash)

Darling you got to let me know
Should I stay or should I go?
If you say that you are mine
I’ll be here ’til the end of time
So you got to let me know
Should I stay or should I go?

Should I stay or should I go now?
Should I stay or should I go now?
If I go there will be trouble
An’ if I stay it will be double
So come on and let me know!

Should I stay or should I go?

*Sigh*

So I'm still at the hospital. I'm lonely and it's boring and I actually really miss TV, just for the company (the TV costs money here too so I'm trying to do without it).

Fluid level is at 3.8, so slightly up from Thursday, but I continue to leak just as heavily and Dr. S. came in and said that while my NSTs have looked normal over the weekend and he was fine with me going home, he wanted to warn me about the 'small possibility of cord prolapse'. How if I was here and the cord prolapsed there is a possibility they would be able to save the baby...but Acorn would almost certainly die if it happened at home. Ah, yes, thanks Dr. S. I know I can always count on you for 'keeping it real' and scaring the shit out of me. I know you have to give me ALL of the terrible scenarios but when you phrase it like "at least if you're here you'd know you did everything you could"...it makes me feel really bad about even considering being anywhere else.

Of course if I'm here and I get an infection, I might always wonder if it was some nasty hospital bug I contracted and maybe I would have avoided it if I'd stayed at home? Can't really control that one. I could get infected in either place. It just bugs me (ha! a pun) more here.

So I figure I'll at least suck it up until our scan on Thursday and see what that shows. Hopefully all looks well and we continue on. If I happen to have lots more fluid I might consider going home again. If it's about the same I suppose we continue on (spending money) in the hospital, until at least 32 weeks, when if everyone is on board, I will be rolled into a sterile cold operating room where I will receive a nicely planned epidural and a calm and controlled C-section resulting in a perfectly healthy (premature) baby who screams his frigging head off for being so rudely lifted from his warm cramped quarters. This will of course happen mid-morning, after a good night's sleep with Brian standing at the ready, armed with his camera.

I suppose I do feel somewhat 'safer' here, especially since I'm in my own room and have my own bathroom and do not have to worry that my room mate is going to sneeze and contaminate the air with a virus, or her family might not wash their hands and coat the door knob with e-coli. I will also admit it was scary sometimes at night at home when I'd get a (perfectly normal?) back cramp and wonder "should I be rushing to the hospital now?" At least here, help is only a push button away. If anything else changes, it won't just be my own nursing skills I'm relying on to decide "is this something to stress about?"

However, the money aspect really bothers me, and my line of thinking goes: it's so much MONEY to just sit here, bored and alone. (Possibly for nothing!) How are we going to pay for all of that AND a new baby? I hope people are really generous if we have a shower and will help pay for some of the most needed and expensive items. I know people LOVE buying adorable outfits but I could do without a million of those. Instead I'm really going to need a crib and a stroller and a car seat and diapers and probably a breast pump because we currently have NOTHING. Not even paint for the kid's room. And what if the absolute WORST happens and the baby dies? Can I have a 'pity shower' where people just throw money at me because it will literally gut me to pay a $x000 hospital bill with nothing to show for it. I worked it out today that if I could make it 32 weeks it would be north of $1400 to continue to stay in a private room. If I make it to 34 weeks, it would be upwards of $2800. And that doesn't include parking, or meals for Brian when he is here staying with me (he buys much tastier meals than what arrives on my tray I might add).

I know I could avoid most of the cost by moving into a shared room...but that might just kill me too.

So...here I sit. Acorn better damn well grow up to appreciate it.

(please baby, I'm only kidding, pleasepleaseplease just be okay and don't die).

Half a year

30 weeks + 1 day, 13 weeks + 3 days post rupture, day 3 in hospital (again).

When I was in high school I took art classes. I started in Grade 9 and continued right up until I graduated. I loved those classes. I got pretty good at drawing faces especially (if I do say so myself) and in my last year of high school I even won the Grade 12 Art Award.

One thing about art that was always lots of fun were the teachers. They were generally warmer, creative type people who were kind of 'quirky'. One of the 'quirkiest' art teachers I ever had was in Grade 11. He was short, with beautifully groomed grey hair, wore pastel coloured pants, had very strong opinions on art (and everything else), was totally gay, and had the most appropriate name: Mr. Flowers. I kid you not.

Art teachers just seemed funnier, cooler and usually more 'with it' than say, my Grade 10 Geography teacher who reused the same jokes every semester. Kids who had already taken Geography would ask "so has he told the radioactive rock joke yet?" and sure enough, during the exact same lesson they warned you about, out came the radioactive rock joke. It wasn't funny the first 20 times he used it, so I'm not sure why he kept it up.

One of my favourite art teachers was Mr. Ludlow. He was middle aged and pudgy around the middle. When not smiling his face kind of had a hound dog appearance, and he always looked sort of mildly unkempt, like he was in his Saturday afternoon lounge clothes all week long. He was one of those types of teachers who 'got it'. He knew some kids took his class because he wasn't a hard ass and didn't get all bent out of shape when kids didn't show up on time. He treated his class more like a college class in that each student was responsible for his or her own work, and he would fairly grade anything that was turned in...but he wasn't going to chase teens down (some of whom were already 18), to do their school work. You either showed up and worked, or you didn't. It was no skin off his nose.

Anyway, I'm getting to the point of this whole story now. Mr. Ludlow lived with his wife and I think he had a kid or two, maybe school aged at the time. But one day he told us about how he had decorated his living room (we might have been working on furniture or housing designs that day?). He said that in his living room he had painted a phrase on the wall. I thought this was so original...words on one's wall??!! That was interesting to me (and unheard of in my white bread little city). And the phrase he chose?

This too shall pass.

This obviously struck me as very bold, original and somewhat contemplative since I remember it even now almost 14 years later. I liked that it wasn't a happy statement about "home is where the heart is" or "bless this mess" or some equally kitschy or cute. It spoke to the fact that nothing is stable. Not even in one's own home. Nothing is for sure. Nothing lasts. Not sadness. Not happiness. Your only sure bet is that things will change (and death and taxes of course).

I remember on the evening after we first found out that Aidan was not likely to be okay, after both Brian and I threw up because we were crying so hard...I remember thinking about my Grade 10 art teacher and the writing on his wall. I tried to imagine us being happy again one day, because I knew we could not go on living in such a pit of despair. Things must get better. They must change. They could not stay the same. We could not bear it. And we wouldn't have to. We could count on the fact that "this too shall pass". And from that point on, until a few months after Aidan died, things were pretty shitty...until they got a little better...and a little better again...and hope for a new baby arrived and things were looking up....until they weren't (again). And then weeks and weeks and weeks passed and things still looked grim, and then they looked a little better, and now things still aren't great or perfect or even a sure thing...but they have changed (sort of).

I write this post tonight in honour of my (HOLY SHIT), HALF A YEAR (26 weeks), of bed rest in LESS THAN A YEAR AND A HALF. I write to remind myself that while I sometimes feel like I have been doing this forever, and that things have felt so wrong, so sad and so depressing for so long...it won't always be like this. Hopefully things will be much better (soon? pleaseohpleaseohplease), but they could also be much worse (*sob*).

But this too shall pass. Nothing stays the same forever. Even when you're on bed rest.

Did I ever mention how much I hate the hospital?

30 weeks, 13 weeks + 2 days post rupture, day 2 in hospital (again)

Did I? I can't remember if somewhere in my blog I might have mentioned how much I hate being in hospital. So let me say it again in case it got missed the first time: I FUCKING HATE BEING IN HOSPITAL.

The hospital is the most crappy place on earth to be and these are only a few of the reasons:

1. Nurses who unplug your ELECTRIC bed to plug in their automatic blood pressure machine. Then they either a) don't plug your bed back in so it will no longer go up and down or raise your head or your feet making it impossible to sit up and eat breakfast while reclining like you're SUPPOSED TO BE DOING because OH YEAH YOU'RE ON BED REST or b) they remember to plug the bed back in...to an outlet that doesn't have power...causing similar results as above.

2. Nurses who repeatedly kick your (admittedly ugly) crocs out of the way when doing your monitoring. This makes it next to impossible to either a) find your ugly shoes under your bed without bending over (hello, pregnant and leaking = gushing while bending) and/or b) make it impossible to reach the same ugly shoes without stepping on the dirty hospital floor, making shoes kind of besides the point.

3. Having to explain to every Tom, Dick and Harry your ENTIRE (lengthy) medical history, dead son and all. Then having to listen to your mother explain nicely to the same person "no, this is not my first grandchild...my daughter's first child Aidan was our first grandchild". Duh?

4. Answering the same questions over and over and over again. Any cramping? No. Any bleeding? No. Any leaking? Yes (what the fuck do you think I'm here for?) Does the leaking have an odour? No. (Actually it does, funny enough, it smells like amniotic fluid). Any palpitations? No. Chest pain? No. Shortness of breath? No. (If I was having cardiac symptoms I'd be calling a frigging code on myself...trust me).

5. Them wanting me to HAND OVER ALL MY medications so they can dole them out. Um...I HAVE been taking these medications every day, forever...I think I can manage just fine without your help. Plus last time I was here I actually had to REMIND you when my meds were due...not a huge vote of confidence in your favour. Why don't I just TELL you when I take them and you can mark it on my chart. K?

Oh and the BIGGEST piss off of all?

Although I spend 24 hours a day in a hospital, in an uncomfortable bed, FOR WHICH WE ARE PAYING $100 A DAY OUT OF POCKET for a private room so I don't lose my shit anymore than I already am...the doctors only see a need to have me on the fetal cardiac monitor for TWENTY MINUTES A DAY. In total. That's all. Never mind the other 23 hours and 40 minutes. Nothing will happen in those hours.

That's right folks. Although Dr. S. poo pooed my idea to do a doppler check from home either multiple times per day, or for longer periods of time (for let's say, oh, I don't know, 20 minute stretches)...instead I get to be here. Increasing my risk of infection. Decreasing my satisfaction. Increasing my stress. All for the pleasure of a 20 minute strip per day. At the low low cost of $100/day.

Awesome.

At least today is 30 weeks!!!! Can I get a holla' from the crowd??!!!

Boo

29 weeks + 5 days, 13 weeks post rupture, day 44 at my parent's place.

So my fluid levels are low at 2.5cm.

Damn.

I've been leaking pretty heavily and consistently all week, and although I still feel movement it's more of a tight rolling feeling (which I equate with low fluid), rather than quick pops so I'm not surprised. Still it's disappointing and worrisome. All other parameters are the same. Acorn still has good movements, still has breathing motions, bladder was full and cord flow is normal. Cervix is 4cm long (this measurement changes so much I have no idea how accurate it is, but I guess bigger is better). They didn't do the measurements of the baby today, which makes me sad because weekly growth is nice to see, even if it's only an estimate.

Dr. S.'s instinct at this point is not to deliver, HOWEVER...with fluid levels that low he's concerned about cord compression, so he would like to admit me to hospital for twice daily NSTs. Boo.

The plan is to go to hospital tomorrow and monitor Acorn's heart rate over the weekend. If Acorn starts having decels then we might be looking at delivery sooner rather than later. If my low fluid levels are just a 'blip' and an ultrasound next week shows increased levels, then he would be happy for me to continue to be at home. My concern is, what if on Monday Acorn has shown a good heart rate over the weekend and looks just fine on the monitors, but continues to have low fluid levels? My bet is that they will want to keep me. And while I'm all for doing everything in Acorn's best interest, I'm loathe to spend anymore time in hospital than I absolutely have to. Infection causing bugs, crappy beds, awful food, expensive parking and astronomical costs for a private room are what lies at the hospital...not a place I want to be if I can help it.

Dr. S. did say that his 'secret suspicion' is that Acorn's lungs are going to be okay, as he or she has had adequate amounts of amniotic fluid for the weeks that were very important for lung development. He can't 'guarantee' that of course, but it's nice to hear him say it. It still doesn't completely alleviate our worry over Acorn's lungs...but it helps a bit. Our goal right now is to build up fluid (come on hole, seal up!), avoid infection, avoid cord compression and make it as long as possible in order to avoid 'preemie' problems. It still feels like an up hill battle. Just keep going. One foot in front of the other.

We also discussed his impending vacation from weeks 31 to 34 of my pregnancy. He told me that one of two doctors would be taking over my case. Neither of them are Dr. K. However, one of them I have met and liked and (bonus!) she's a woman. As I've previously mentioned, I would have chosen a female OB from the start if I had any choice in the matter, so I might just get this one tiny, now insignificant, wish granted. Joy.

So, my next update will be from my hospital bed. Let's hope it's a good one.

Summer

29 weeks + 3 days, 12 weeks + 5 days post rupture, day 42 at my parent's place.

I have always loved summer. It's my favourite season. I love being able to walk outside and not worry about gloves, boots or jackets...heck I often walk around my yard without shoes. Bare feet tickled by grass, sun warm on my skin. I love swimming. I love going for long evening walks. I love sitting in the sun. As a kid, I loved being off school. Long days to read, relax and play with friends. Things always seemed possible in the summer.

Today is the first day of summer.

Aidan was due in mid to late summer, but arrived only a month into spring. On his due date I looked around and saw a day so different than the one he was born on. On August 15th the trees were in full bloom, the plants and bushes were over grown, the day was hot and muggy with summer storms brewing. It didn't resemble April 21st at all. We should have just been starting out our lives together, but Aidan was already almost 4 months gone...a whole season away.

But Acorn, no matter what happens, will be a summer baby...just like he or she is suppose to be. Hopefully a healthy, happy July baby instead of a late August, early September one. A Cancer instead of a Leo or a Virgo. Early...but not too early to make life improbable, like it was for Aidan.

Hopefully all good things are possible this summer.

Decisions, Decisions

29 weeks + 1 day, 12 weeks + 3 days post rupture, day 40 at my parent's place.

As a mentioned in my Thursday post we are starting to get to a 'decision making' point in this pregnancy. Dr. Eeyore (who I will now start referring to again as Dr. S. as he is no longer such a downer) actually left the room at one point on Thursday to discuss my case with other OBs in his practice. His question for them was "when should I deliver this patient?"

Their answers were the standard "let her go to 34 or 36 weeks if she's stable...and by the way why if she's a pPROM isn't she in hospital?"

The answers these other OBs gave made me kind of nervous. They were using the textbook 'standard of care' model to answer his questions, but as we know, I'm not the standard.

At all. Ever.

And it wouldn't matter so much what those other OBs think as long as Dr. Eeyore (whoops, Dr. S.) and Brian and I are all on the same page. If he thinks it's best to deliver at 32 weeks and the NICU team agrees, I'm all for it. I recognize that every day I stay pregnant I'm helping Acorn to avoid 'preemie' problems, but I also recognize that each day is another day I could get infected which would drop Acorn's chances of survival significantly. So maybe it would be better if I hit 32 weeks and baby still looks good, we call it a day and say "ok, Acorn you're coming out!" I especially liked that Dr. S. is leaning towards 32 weeks because he doesn't want to push our luck. He's conscious of our prior loss and this past Thursday was the first time he ever referred to 'what we've been through'. He wants us to have the best shot possible at a healthy baby, and that means the world to us.

So Brian and I figured we take it a week at a time. Each time we see Dr. S. we'll make a decision regarding Acorn: take him this week or leave him?

Then we found out Dr. S. GOES ON VACATION FOR FIRST THREE WEEKS OF JULY!!!! (Weeks 31 through 34 of my pregnancy, assuming I get that far).

Crap.

Now I know, everyone deserves a vacation, and July and August are big vacation times here in Canada so I shouldn't really be surprised. Plus, we still have two more appointments with Dr. S. (June 23 and 30th) where I hope we can devise a plan...but after that, some other OB will be 'managing' my case. Now it won't be so bad if it's say, Dr. K. I trust him and he knows about our 'case', but it could be some doctor we've never met before! This doctor might not be as willing to do a C-section on a woman whose 'doing well' at 32 weeks and might want to 'push it'. That might be a good call, or it might not be. But I would hate to leave that decision with a doctor who we might have just met.

I feel like if Dr. S. goes away and I'm still pregnant, Brian and I might have to be more forceful in terms of advocating for ourselves with a new doctor on board, and might be more responsible for decision making. Taking Acorn out at 32 weeks (or 30, or 31?) might be a good call. But what if Acorn suffers from more preemie problems due to us 'rushing' in, like NEC or IVHs or a PDA or even less serious ones like GERD. And what if his or her lungs are 'worse off' then they would have been at 34 weeks? But what if we delay hoping for a bigger, stronger, more mature preemie, but then infection sets in. An infected baby at any age is bad news.

And don't get me started on the lungs...the state of Acorn's lungs keeps me awake at night.

Who knew this 'parenting' thing would be so HARD? Of course, the up side of having to make the decision of when to 'start' our premature baby's life, is that it will hopefully make any other normal parenting decision we have to make seem easy by comparison. When should we start solids? Who should babysit our child? What school should Acorn attend? Can Acorn walk to school alone at age 12? Should we allow Acorn to go on an overnight camping trip with friends at 15? Should we be upset if Acorn gets a tattoo at 17?

Those will be cake by comparison. Now if we could only be assured we'd get there.

Have you ever had to make any life or death decisions for your child, either the living or the dead? Did you feel afterwards that you made the right call? Why or why not?

Heart

28 weeks + 6 days, 12 weeks + 1 day post rupture, day 38 at my parent's place.

Acorn's heart is fine.

And I didn't see anyone I know at the hospital. My mom and I were able to make a clean getaway.

Yippee!

The scoop for today

28 weeks + 5 days, 12 weeks post rupture, day 37 at my parent's place

Ultrasound went okay today. My fluid levels are a little lower at 4.4 but the bladder was full and everything else looks good. Baby has grown about 200 grams in a week and now is estimated to weigh 2 lbs 7 oz. Still measuring a little small, but remains on his/her own growth track. Blood flow through the cord and in the brain is perfect. Still can't see if it's a boy or a girl...so Acorn he/she remains. What was really cute was we got to see the front side of the face and Acorn looks to have sort of 'chubby' (relative to size, of course) cheeks. So at least if Acorn's head is a kind of a funny shape, his or her cute cheeks will make up for it!

Dr. Eeyore confessed to be 'excited' today at our appointment so I call that progress. He's amazed that I keep showing up pregnant every week. He's starting to wonder about how long to let me go. He's starting to err on the side of delivery as early as 32 weeks, whereas he admits other doctors would let me go as far as 34 or 36 weeks. As he said, he wants to get the baby out in the best condition possible and it would be bad if what prompted delivery was infection. Infected babies don't do as well. But, on the other hand Acorn is doing well right now and therefore it's probably best if baby stays put and bakes a little longer.

For my own sake I'd like this baby delivered as soon as safely possible. My back, legs, feet, neck, and shoulders ache on an almost constant basis from lack of movement. I would love to be able to get up and stretch and go for a walk...but alas I just have to lie there and beg my husband for massages instead. I try to do ankle rolls, leg pumps, shoulder stretches and side bends but my movement is severely limited. Last night was also the first night that I noticed my fingers felt a little swollen. I'm hoping it's just a 'pregnancy' thing rather than a 'heart not working so well' thing, but still it's a bit concerning.

For Acorn's sake, I'd like to go as long as possible. Bigger is generally better. I just hope lung development has been adequate and Acorn's delivery date is the start of a long healthy life, rather than (another) worst day of our lives.

As for the fetal ECHO we are going to go, but I have spoken to the nurse coordinator at the clinic and explained the situation. She is on board with only getting the images they can get. There will be no 'getting up and moving around' and no pushing to try to get the baby to 'turn'. What they will see is what they will get. I feel okay about this decision (it is another trip in the car and time outside, which is the highlight of my week!), but I just hope it doesn't add to our worries.

So that's the scoop for today.

Rambles

28 weeks + 2 days, 11 weeks + 4 days post rupture, day 34 at my parent's place.

I'm scared and sad tonight, not for any particular reason (other than the obvious), so I thought it might help if I write it all down. So sorry in advance if this post is kinda ramblely...

I got a text message from Brian tonight after he got home stating that I have (or rather Acorn has) a fetal ECHO scheduled for this coming Friday at 8am. So this would be another (stressful) appointment in addition to our (stressful) regular Thursday OB appointment. At my OB appointment last week Dr. Eeyore felt I was 'ruining his protocols' because I, as a cardiac patient, had not had a fetal ECHO. They like to do fetal ECHOs on all maternal congenital cardiac patients because I have a slightly higher risk of having a baby with a heart defect, and it's nice to know this info prior to delivery so you aren't unprepared for what could be a sick cardiac baby. Statistically the general population has a 1-2% risk of having a baby with a heart defect, whereas I have about a 3-5% chance. So a higher risk for sure...but still not enormous.

I was kind of pissed with Dr. Eeyore for 'admonishing' me for not having a fetal ECHO. Um, hello, jackass, you were SURE up until a week or two ago that our kid was a goner...so why the hell would I have gone for a pointless fetal ECHO? Waste of time, energy and resources much? (I swear, sometimes doctors are so 'smart' they forget to be 'sensible'...I could write a whole post on this from a nursing perspective, but that's for another time).

Anyway, now that Acorn is technically 'viable' and I understand Dr. Eeyore's reasoning for wanting this information, I am still of two minds about going for the appointment.

First and foremost, I'm wondering how likely it is going to be that they will get good enough pictures of the heart for the scan to be useful. Since my fluid levels probably vary day by day, there is no telling what they'll be on Friday...could be enough to get good pictures...but likely not 'perfect'. When they did my anatomy scan they were able to see all 4 chambers of the heart (good!), but weren't able to see detail. On the repeat scan when I had the highest fluid level of 11, the nurse was able to see a detailed view of the right side of the heart (all normal!), but baby would not turn to show her the left side. So four chambers plus a good right sided view have been seen. What if we get there and they can see one side but not the other? It's not like I can walk up and down the hallways and jump around in order to get the baby to 'turn' (hello...low fluid levels, baby CAN'T turn, plus there is NO WAY I'm chancing walking around just so you can attempt to take pictures of my kid's heart).

On the other hand I wonder if an ECHO could give us any idea of how the lungs look. For example, if they see good blood flow to the lungs does that mean they are developing well? Could they give us an idea of how much chest space the lungs are taking up (hopefully showing normal amounts and therefore good lung growth)? I will ask about this at my appointment on Thursday, and it might be the deciding factor.

The other factors affecting my decision are purely comfort and stress factors for myself. 1) it's another early morning appointment and I don't sleep well prior to any appointment. 2) it could be a very long appointment and I absolutely cannot wait in waiting rooms if I'm leaking. The stress of that sends me through the roof. 3) If there is something that is 'ambiguous' in terms of bad news, ie: "well the left side of the heart looks slightly small...but we're not sure what that means, and it could be nothing"...the stress of hearing that might just break me. Everything is so 'unsure' at this moment if they add in a 'possible, maybe, but not likely, but it could be' heart defect I might just keel over. I have enough to worry about thanksverymuch. 4) it's ANOTHER round of medical people to explain my fucked up medical history to. Yes, I have a heart defect. Yes, I have a dead son. Yes, this pregnancy didn't go quite as we'd hoped. Yes, I know my fluid levels aren't normal...and so on and so forth. I'm tired of feeling like a freak. 5) the clinic where they do the fetal ECHO is at the children's hospital where I work. Not only that, it's DIRECTLY across from the unit where I'm on my most recent leave of absence from. There is a large possibility I'll run into someone I know. "Why yes, hello colleague that I haven't seen in months, I am still pregnant...yes, things are still dicey...yes, I'm being pushed around in a wheelchair in hopes of preventing amniotic fluid from leaking out all over the floor...hope you have a good day too!" Awkward.

However, in the good news column, one of the moms on the pPROM message board that I follow had her baby today at 29 weeks and 4 days after being ruptured for 8 weeks. Her daughter is doing well so far and is on CPAP room air (no added O2). If that's what Acorn's first day is like, I will be THRILLED! It doesn't mean you're out of the woods respiratory wise as baby's often have a bit of a 'honeymoon' period when they first emerge, but it's definitely pointing in the right direction in terms of lung growth. I hope her daughter continues to do well. So, mood upper.

But then, of course, I had to go and scare myself and read the abstract of a study conducted at the NICU where Acorn will (hopefully) spend a short and uneventful stay. It stated that while pPROM outcomes have improved, pPROM babies generally have more complications than matched cohorts (ie: other babies born at the same gestational age). These complications include brain bleeds, retinopathy of prematurity (potential for blindness), and chronic lung disease. Definite mood downer.

I'm just so afraid of what is going to happen. It sometimes seems unbelievable that we could possibly have a good outcome. I've seen way too many of you out there in babylost land over the past 14 months who have had perfect pregnancies, no complications and then like a punch to the gut the baby is dead for no good reason. Sadly, Acorn has every reason NOT to survive, not to thrive, not to do well. And part of me is SO proud of Acorn for doing so well so far...and another part of me is so afraid for what he/she, and we might have to face. How do you get this far, have this much 'hope' tossed your way, only to fail to get your 'miracle' (again). It's so overwhelming when I think of everything my body and Acorn have had to face and what might still be to come.

I just hope whatever luck (fate, karma, God?) has kept us going this long, has and will continue to stay on our side and help good things to keep coming our way.

Did you ever feel pressured into what you felt was 'unnecessary' or 'too stressful' medical tests, either baby related or otherwise? How did you resolve the issue?

28 week musings

28 weeks, 11 weeks + 2 days post rupture, day 32 at my parent's place.

28 weeks...huh. Not bad. Never really expected to get here...but glad to see it for sure. If this were a climb up Mount Everest I would be at 2nd base camp or something. High up, for sure. Way higher than most get...but still the top is covered in clouds. Or, to use another analogy, I feel like I've been nominated for an Oscar...but I'm a long shot. I'm the one that only got nominated because I'm a nobody, but had an amazing performance in my first ever lead role. I don't know if I expect to win...but hey, since I'm nominated, it COULD happen. Plus it's been fun hanging out with the likes of Meryl Streep and Dame Judy Dench. I guess what I'm saying is I still don't feel like I fit in with 'real' pregnant women...but the idea that there might be a living baby in my future (and an NICU stay) is starting to feel slightly more 'possible' rather than completely improbable.

Now, if only my crystal ball were working and I could know about Acorn's lungs. Because no matter how far up this mountain I get, if those don't work, we're sliding all the way back down into babylost hell.

In other news, my insurance company denied my claim for nursing services, so we continue to rely on family and friends to come and babysit me. I can't say I'm surprised after the chilly reception I got from the nurse coordinator who came to assess me. The insurance company sent me a form basically stating I was too high risk and should be in the hospital. Awesome...thanks for nothing insurance company. So far, things have been working out, but we have no one to cover this coming Monday, and Brian refuses to even consider letting me stay by myself (which I'm secretly glad of), so it might mean he has ANOTHER day off this week, in addition to Thursday which is our doctor appointment day. *Sigh*...it's only money, right?

Since our doctor's appointment on Thursday I've been leaking more fluid. I try to remind myself that Acorn is peeing lots, and that fluid can re-accumulate...but it's scary and upsetting when it happens, especially if it's lots of larger gushes in a short time period. It's hard not knowing when or if it's going to stop and how long it might take to build up again. One larger gush every couple of days isn't too terrible, but multiple times over the course of a day or two freaks me out. It also didn't help that yesterday Acorn seemed to be stuck WAY down in my pelvis (like bikini line level) and wasn't moving very much. Seriously kid...I need you to move at least a couple of times an hour to let me know you're okay! Acorn, you've got to work with me here. Save the drama for when you're much older and healthier and want a Nintendo or a car or something. I'll cave...I promise.

When the gushes and less movement happen I never know if we should just wait it out and see what happens or should we be rushing to the hospital to get Acorn checked out. The decision making feels like such a big responsibility, which I know is why Brian wants me in hospital. He's afraid we'll choose wrong and wants 'professionals' making those calls, not us. It's just that I could go there and get admitted and then sit around for days or weeks, sad, uncomfortable, and stressed. I'd just be eating crappy food and increasing my risk of infection..and Acorn may be just fine and not know the difference.

I wish I could see the future. It would make things so much easier.

"Interesting"

27 weeks + 5 days, 11 weeks post rupture, day 30 at my parent's place

Sheesh, just keeping track of the above numbers is starting to tax my brain which has turned to mush after watching so much crap TV and doing nothing more strenuous than showering these past few weeks.

But anyway, on to the update.

I'm now going for weekly biophysical profile ultrasounds. Basically they measure the baby, make sure Acorn is still continuing grow and isn't showing signs of distress, measure my fluid index and then we get to see Dr. Eeyore and find out what he has to stay about it all.

To sum up, baby is still growing, although still on the small side. Last week was measuring about the 40th%, but today is about the 20th%, although I take all these measurements with a grain of salt because the low fluid levels make it hard to see. I've been told they don't really worry about babies until they get below the 3rd% so I figure we're okay. The baby's weight based on their calculations is 894 grams, up 70 grams from last week, and is *just* below 2 lbs.

Fluid level was pretty decent at 7.1. Of course I had a bit of a gush when I got home so that always makes me kind of anxious and stressed and probably dropped my fluid levels a bit.

Otherwise blood flow continues to be good and the nurse doing my ultrasound said that she could reasonably give me a biophysical profile score of 8/8, however that doesn't really 'capture' the pPROM and slightly low fluid levels, so she gave a 6/8 with 2 off for 'low fluid'. I get what she's saying...it's not really 'fair' to give a pPROM mom a perfect score, which is the same score a normal pregnant woman would get. I'm also not really too concerned about 'scores' at this point. I was just happy to hear that Acorn was moving well, had good tone and was showing breathing motions (diaphragm movement) and had some fluid...those are the major things I like to see.

After that we ran into Dr. K. He was so happy to hear that I was doing well and was really positive when he saw how much fluid I have. When he asked how far along I was now and I said almost 28 weeks, he said "oh that great, that's just what I was hoping for you guys". Yeah, us too Dr. K.

Then it was on to Dr. Eeyore. When he went over my ultrasound report today he said "Well, now you're getting interesting". I know he meant this as a compliment, and I suppose I am becoming more 'interesting' obstetrically...but I felt like smacking his face! OH, I INTEREST you now do I? So what, I've just been 'dull' these last 11 weeks have I? Uncertain outcomes not your style Dr. Eeyore? Like those happy yummy mommies who only run into any sort of 'difficulty' after 24 weeks? Sorry jackass, pregnancy is 40 weeks...it doesn't start when you could 'do something' at 24 weeks and sometimes shit happens earlier than you would 'approve'. Now that you actually might have to step up and make decisions (hospitalize or not?, C/S or not?, deliver the baby now or wait?), I INTEREST you do I? Awesome. Glad my kid and I have got your attention.

As an aside: this is one thing that I like about nursing. Patients are considered 'whole people' and therefore don't become more or less 'interesting' based on their health conditions. In fact the patients I remember most, cared the most about, want to help the most, are the ones whose outcomes are uncertain or poor. Just because I couldn't always "DO" for these patients what they wanted (have a health child), I could at least be extra caring towards them.

Anyway I digress...

He went on to explain how when I ruptured he would have given me a 0% chance of bringing home a baby and now he's more optimistic. He's thinking that my rupture is likely 'higher up' in the sac, rather than over my cervix. This has been a good thing in terms of latency, preventing infection, and for keeping fluid in. He says having fluid levels of 7 mean that I'm not their typical pPROM patient who generally has next to none. He's actually not looking to hospitalize me, although he said it was up to us. He feels I'm doing well at home, I 'live' (or am shacking up) near by, and generally the bigger the baby gets the less likely you are to have a 'speedy' delivery necessitating emergency care. Acorn is also bum down in a frank breech position, which helps block the cervix and would help to prevent cord prolapse. This is all good news, but my husband and I are still nervous. The farther we get, (we hope) the more 'chance' the baby has of doing well and we'd feel awful if our 'chances' were lowered by being at home. Plus it's scary as hell to imagine another emergency ride to the hospital in pain or bleeding or both. So this might take some thought and decision making on our part.

I also had an ECHO, but we didn't want to stick around to discuss the results with my cardiologist. They were going to make me wait all morning to see her, so we said no, just call us if anything is wrong. Then we headed home. I've been a bit worried about how my heart is doing, based on the pregnancy and lack of any exercise at all so I hope those results are status quo too. I would have liked to hear the results today so I could stop worrying about my heart, but I wasn't willing to stick around for over 2 hours sitting in their waiting room.

All in all a fairly good day.

So the waiting continues...thank goodness.

3

27 weeks + 3 days, 10 weeks + 5 days post rupture, day 28 at my parent's house

Today is our 3rd wedding anniversary. Three years ago today, June 7th 2008, was one of the best days of my life. I had such a fun day. Our wedding went off with barely a hitch. Exactly the way I planned it. Our whole lives were ahead of us. We were happy, carefree, excited to see what would happen next.

Happy Anniversary to Us.

Please please let this be our last one without a (born) living child.

Right Where I Am: One Year, One Month, Six Days Later

Okay, I've enjoyed reading all your posts about 'where you are' right now after your loss as kicked off by Angie at still life with circles, but I'm honestly having a hard time figuring out where I'm at with Aidan's death. His death is currently so emotionally tied up with all that I'm going through with Acorn, it's hard to even separate the two situations in my head....but I'll try, just for you guys.

So....

Where am I at?

I still miss him. I still think about him every day and wish that things could have been different for him and for us. I wish I had got to spend more time with him. I wish I had more pictures of him. I wish I could remember what his ears looked like. Wish I had moulds of his hands and not just his feet. Wish I knew what colour his eyes would have been and what his voice would have sounded like. Wish I could hold him one more time.

Still wish that I could have saved him. Some how, some way.

But I can't. And, over time, that has just became how it was. How it is. Aidan is dead, but I am alive. As I said in an earlier post, it will never be 'okay' that he died, but our lives have continued on and Brian and I are 'okay'. We have found the resilience within ourselves. Life without him is hard, and some situations and moments are harder than others. But over time, life has became more and more bearable, livable, even enjoyable. He is not here...but I am, and I would be doing him a disservice not to live the life I am given. He didn't get the chance...so I'll have to take it for him.

And then I got pregnant again. For awhile things were going well. We felt happier, more fulfilled, more hopeful about our future. I don't mean to imply that Acorn was 'making up' for Aidan. It was that it was so nice to feel like we somehow were being granted a second chance at having some control over our lives. That was a huge thing that Brian and I felt we lost with Aidan. Yes, we lost a child, and that was the worst thing ever...but it was also so hard to feel like we lost control of the direction of our lives. We wanted a baby, a family of our own, just like millions of other couples our age. And while we got pregnant with somewhat more trouble than others seemed to endure, that was only the beginning. After weeks of bed rest, bad news, bleeding, pain and fear, Aidan was gone...just like that. When I got pregnant with Acorn we had hope that things could be more 'normal'.

Ha.

We stepped out of one nightmare-ish roller coaster of a reality and into another.

And all my emotions and thoughts this pregnancy are coloured by what happened to Aidan. I felt I did pretty well through the first trimester. I felt like I could cope with the stress of being a pregnant babylost mama. Yes, it would be difficult and we would probably worry more, but we also felt like our prior situation was so far out of the norm that it was likely we wouldn't have the same complications. I felt I could be relaxed if everything was shown to be proceeding 'normally'. And for awhile, it was.

In those first 14 weeks I was doing well, feeling more positive about my life, myself, and my body. I was hopeful right up until I saw the spotting. And I knew. Right then, I knew. I tried to keep up the optimism. Tried to listen to the doctors when they said to remain 'cautiously optimistic'. Blow it off as babylost mother fear...but I knew. Things were crumbling, just like last time. My body wasn't in my control anymore, again. I was deviating from normal, from safe, again. Things were falling apart, again.

So, I wasn't surprised on that Thursday, 10 weeks and one day ago to feel that old familiar gush down below...

Rupturing again has made me relive my pregnancy experience with Aidan in a much more technicolour way than I ever wanted or expected. I feel more fragile this time around. More prone to sadness and despair. More dissatisfaction with my medical care. More anger and more grief over 'why?'

And how I will feel about Aidan, will be shaped in the end by what happens to Acorn. If Acorn survives and does well, I will be thrilled, over-joyed, feel blessed and grateful. But I will wonder "why couldn't Aidan have had the same outcome?" He was just as loved, just as wanted, just as special. My heart will sing for my living child, and will weep for my dead one.

If Acorn survives but has major life long difficulties, I may wonder if Aidan got the better deal. Aidan was born, he was held, loved, and then he was gone. No more pain or suffering. No tubes, wires, surgeries, wheelchairs, treatments, etc. No more uncertainty. This is actually the outcome that scares me the most. As much as I want Acorn to live, I want him or her to live well. Live with potential. Acorn deserves it. I have been strong enough to be a babylost mom...am I strong enough to be a special needs mom? This feels like a continuation of the uncertainty and fear that has been running our lives for the last two years. I don't know if I could live like that forever.

If Acorn dies, I am worried about what will happen to us in the wake of two losses. Two drawn out, but ultimately failed pregnancies is a lot to contend with mentally, emotionally. socially and physically. Will the grief and the sadness and the anger ever get better? Will our resilience hold up under the weight of all of it? How will we ever feel any hope for our future? Will we ever get that longed for sense of control, safety, security? Will everything we create always die?


Where I'm at is in limbo. I do not know what will come from our current circumstances and my thoughts on babylost-ness are now so hopelessly tied up with our current pregnancy that I just cannot tease them apart.

All I can say for sure is that one year, one month and six days later I still wish Aidan was here, but I have learned to live with the fact that he isn't.


And I still love him more than words can say.

Soldier On

26 weeks + 5 days, 10 weeks post rupture, day 23 at my parent's place.

So I've been ruptured 2 days longer than I lasted with Aidan. Quite a milestone. At our OB appointment today Dr. Eeyore said that when I ruptured 10 weeks ago he never would have predicted that I would last this long. My response was that "well, if I'd been born a few decades earlier I wouldn't be here either based on my heart condition". You just never know.

Since I'm now well past the point of viability, have had steroids, and am still pregnant, Dr. Eeyore seemed a little more positive today. He was happy to see that blood flow through the cord is normal, fluid level is low at 5.3, but at least I don't have anhydramnious (no fluid). Acorn continues to grow and is in the 40th percentile for gestational age, weighing about 834 grams according to the formula they use to calculate weight. My cervix is long and closed and measures at 2.4cm. Baby is still breech so I'm probably looking at a C-section whenever we deliver. Hopefully my uterus will be big enough whenever that happens that I can have a transverse incision rather than a vertical one. If you have a vertical incision in your uterus they will never let you have a VBAC. You will forever need C-sections for all future children (a concern if we ever need/want to do this again). At this point I'm not opposed to a C-section, but it IS major surgery after 10 (or 12, or 14?) weeks of bed rest, on a high risk cardiac patient and I fear I'm looking at a rough recovery.

While I'm content with the outcome of our appointment today, one thing that they keep finding bothers me. Acorn's head is kind of a funny shape. It's called dolichocephaly. Basically when you look at the baby's head from the top it isn't round. It's oval shaped. Quite oval shaped. The diameter across is measuring at 21 weeks, but the overall circumference is within the normal range. So the head is long and narrow. This is likely due to prolonged low fluid levels.

The doctors don't seem terribly concerned about it and have said that it can go back to normal...but I'm afraid Acorn will look funny when he or she is born. I mean it's not a huge deal in the long term if it can be fixed or will grow back to normal...but what if there is no long term? What if we only have a short time with Acorn? It gave me such pleasure that even though Aidan was small and very quickly dead, at least he was cute in a way that other people could appreciate. What if Acorn is odd looking and the only photos we have to show people don't show a 'normal' looking baby? It's a small worry compared to our other massive worries (lungs!!! cord compression!!! infection!!! prematurity!!! C-section!!!), but anything else that is 'abnormal' at this point always seems like too much to handle.

And so we soldier on.

Note: Yes, dolichocephaly is the shape that normally preemies develop after laying on the sides of their heads for weeks/months. I remember this shape well from my years in the NICU. However, I don't remember any of the babies coming INTO the NICU with that narrow shaped head. They all started out with round heads and then over time morphed into dolichocephalic baby heads. I'm just hoping it's not SO severe or noticeable that it makes Acorn look funny.