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.
Thursday, June 16, 2011
Monday, June 13, 2011
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?
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?
Saturday, June 11, 2011
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.
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.
Thursday, June 9, 2011
"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.
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.
Tuesday, June 7, 2011
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.
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.
Friday, June 3, 2011
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.
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.
Thursday, June 2, 2011
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.
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.
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