Robbie was intubated for the first 5 weeks of his life. That's a long time to sit and watch your baby not breathing on his own, for the record. And the thing about being intubated is that's all you can do - watch. You can't pick them up or jostle them around much because you can't risk pulling that tube out. And believe me, once you've seen it come out by itself (which Robbie did something like 5 or 6 times during those 5 weeks, which no, isn't normal) you really don't want to have it happen again. Seeing nurses run is never encouraging. Seeing their hands shaking is even worse. Watching your child limp and blue, and someone manually bagging oxygen back into their bodies, well, it defies anything I have words for. My point is, when they're intubated, you don't even want to do anything except watch their chests rise and fall.
Which leaves a lot of time for looking around, too.
I'm a fairly (okay, extremely) social person so spending 8, 10, 12 hours or so in the NICU doing basically nothing, I eventually got to chatting with almost everyone around me at some point or another. I got to know their stories; What gestation their child was born out, what caused it and so on. There were three or four of us with micropreemies who all spent a lot of time together. Our babies were the most critical, so we were all clustered together in a room that was doubled as the admit area. We saw everyone come in, from other micros who would eventually join our long-timers club, to full termers who had some trouble at birth or right after, and of course, everything in between.
I have a very clear memory one day of sitting, talking with the mom of a 25 weeker who had been born just 4 days before Robbie about another baby who had been moved to the step-down unit that day. I had been surprised to come in and find that baby moved. I must have asked if she knew where he'd gone or something, and she told me he'd gone down to the other unit. I was surprised because he'd been a 29 weeker who wasn't much more than 2 pounds. Robbie must have been 3 or 4 weeks old at that point. He and my new friend's daughter weighed about the same as this baby who had been moved already, but here we were, still listening to the sound of the ventilator alarms on our two babies. (The sound of which will haunt me for the rest of my days, I swear.)
What I remember was when she answered, she said it with this sort of defeated sigh. "He went down to the pods." (The pods being the brand new step-down unit that had opened two days after Robbie was born. It was NICU Mecca in our minds.) My eyebrows shot up "Really? Already?" She looked chagrined, "Yep." We both glanced at our intubated babies, up at their monitors for their vitals and then back at each other. I think her daughter was actually on an oscillator at that point. That's a specialized ventilator not-so-lovingly referred to as "the jet" because that's approximately how loud the thing is. All I could say was "Wow." We were quiet then, both of us silently reflecting on what a difference 3 or 4 weeks could have meant to our babies.
I'm not ashamed to say I was jealous in that moment. I was jealous of that baby's mother being rid of the vent, being rid of that room we'd lived in for so long. I was jealous that she could now do something besides just watching. I was jealous that she got to keep her baby inside her body long enough to make such a profound difference in our experiences.
Of course, now I have enough distance and perspective to realize that 29 weeks is still really early. That is a mom who still worried if her child would survive birth or the NICU. That was a mom who also saw her baby stop breathing and turn blue; a mom who had to leave her child in the care of sometimes literal strangers each and every day. While our experiences were somewhat different, they were also very much the same. But in that moment, I had more appreciation for the difference three weeks can make than at any other time in my life. I so wanted to be that 29 weeker mom.
At my OB appointment on Monday, my doctor walked in and beamed. "Twenty eight weeks!!" I couldn't help but be excited with her. I told about the 29 weeker I remembered and she nodded. We agreed it's still too early, but it sure was exciting to be this far. She felt like we were going to see at least 30 and was very happy about it.
Because my labs last week had been pretty stable, I got to take the week off from the pee jug and just had some blood work drawn that day. I left feeling pretty confident about the course of things. Of course, my body is never happy with happy, so the nurse called on Tuesday to kill my buzz.
ALT was back up a bit, to 63. That's still better than it had been, but this week my AST creeped over normal as well. It should be under 30, and it was 33. That's not horrible, but because that one had been normal and now wasn't, it added a layer of concern that I could have lived without. A few other things were just slightly askew as well. My potassium was just a little low, glucose just a little high though I passed my 2nd glucose tolerance test the week before.) The nurse indicated that my OB still considered these numbers stable, and to continue with our plan.
I hung up the phone and started cussing. I wasn't sad, or worried, or anxious. I was angry- absolutely pissed, in fact. What the fuck is wrong with my body? Seriously, a few years of infertility, 2 miscarriages, and then I get preeclampsia at 26 weeks? WHO THE HELL GETS PREECLAMPSIA AT 26 WEEKS? The odds are pretty much astronomical against it. But who? Yeah, this girl.
And then I get pregnant again and at 26 weeks, it becomes clear we're headed there again? Seriously? SERIOUSLY? I was mad.
I spent a full 24 hours just being pissed off. Everyone around me tried to be encouraging, but I didn't even want to hear it. I didn't want to hear about my blessings or my luck or any glass-half-full stuff. I just wanted to be pissed off. And I was.
Of course, after I had my temper tantrum, I was able to think more clearly. I remembered again that 29 weeker from the NICU. And I focused on how far we have come. When you get a call at 26 weeks to come for steroid shots immediately, you don't expect to see 29 weeks with a baby in your belly. But I was here anyway.
So here I sit, now at 29 weeks and 1 day. Chello is kicking at me, and I'm feeling hopeful. We're still living one day at a time, but those days have already added up to 3 more weeks than we got before. While I hope they get to add up to 3 more weeks, and then 3 more weeks again, I know that what we have matters a lot. And I am grateful.
Trish
Friday, September 30, 2011
Monday, September 26, 2011
28w4d
Well, blogger just ate an entire post. That's frustrating, and it's really late, so I'm not going to try to retype the whole damned thing. It didn't even save part of the draft.
So here's the bullet points of importance:
--Trish
So here's the bullet points of importance:
- 28w4d. More pregnant than i've ever been. YAY!
- last week's labs were stable or improved.
- didnt get a protein level, but it was "stable"
- liver enzyme (ALT) down to 54. Not normal, but much improved
- Chello measured at 54% on monday.
- peri happy with Chello
- not happy with labs, confirmed modified bedrest
- feeling much better, no swelling to speak of
- BP up to about 130/80, but that's "normal" for me prepregnancy, so trying not to freak out
- Robbie had his sedated hearing test on Tuesday
- he can hear! 100% of all ranges and tones in both ears!
- also woke up from anesthesia well, yay again!
- I'm well-read and watching too much TV.
- Overall, happy place to be!
- Blogger pisses me off
--Trish
Monday, September 19, 2011
27 weeks 4 days
Still going...
As my last post indicated, Monday's labs showed an improvement in kidney function but a decline in liver. Specifically my ALT was up to 71. My OB isn't in on Wednesdays (when the labs came back) so the covering OB looked them over and sent me immediately back to the lab for repeat blood work. I then saw my OB on Thursday for my regularly scheduled appointment.
She was as wonderful as always, of course. She came in and immediately asked how I was doing, clearly meaning emotionally. I told her that I was holding it together okay, but that the day I had to come for steroid shots really sent me over the edge for a while. She was very sympathetic and hugged me. We kibitzed a while about some really annoying drama with the peri lab (at one point they told me they never got my lab results, but that they didn't care. They then apparently called my OB to yell at her because she had them and they didn't. Even though THEY ordered them and had her CCed on the results.)
Then she asked how my blood pressures had been at home. I was honest and told her that at home, they'd been quite good, a little higher (but not really high) at work. She shook her head and asked how I'd feel about being put off work. I told her it was fine. I certainly can tell a difference in the way I feel at work versus home, I can see it in the numbers, and frankly, when I'm averaging three trips a week to various labs or doctors, getting the time off work was getting challenging. We have short term disability insurance and we went into this knowing we would probably need to use it. I had hoped not to need it until much later, but we were prepared to do it when we needed. She felt it was time. We agreed that I would finish the week part time- I worked 4 hours Thursday and Friday and then be done.
She still thinks we can make it into the 30s for the baby. I told her that I had pretty much given up the idea of 37 (she ruefully agreed) but that I was still holding out for November. November 3 would be 34 weeks. Some 34 weekers go home, and even if they don't, USUALLY it's not a long NICU stay (believe me, I know 34 weekers have complications. Don't send me hate mail, please.) and she agreed. She thinks that's possible. Obviously I'd love to prove everyone (myself included) wrong and go longer, but that seems like a reasonable, hopefully attainable goal.
I spent my last couple of days at work tying up loose ends, getting my projects covered, letting everyone know I would be gone for a while, and doing paperwork. I took it as easy as I could while there and at home. My boss was obviously a little stressed at losing me, but really supportive about going. She is the mom of a former 32 weeker herself, having spent 4 months on hospital bedrest because of an incompetent cervix (she had previously lost a baby at 16 weeks to the same condition) so she is uniquely sensitive to my situation. There was mostly good-natured ribbing from my coworkers about being abandoned (though one particularly lovely soul demanded to know if I was "going to get fixed now" and when I told him that David was going to get a vasectomy, he asked "why, he's not the one whose body is all messed up?" Thanks.) and then I was off.
This weekend has been a little hectic. I had specific permission from the doctor to attend a couple of events I had already planned for, so long as I kept my feet up. Unfortunately my evening plans had to be cut short because my blood pressure was lingering at just barely under 140/90 and I had to get home and try to get get it down. Fortunately once I was really prone and quiet, it did, but it's been around 130/80 pretty much since then.
My OB had warned me that sometime between 25 & 28 weeks, BP tends to resettle closer to a normal pre-pregnancy pressure, which for me was 130/80. (That was my post-Robbie "normal." It never fully recovered after he was born.) I know that's an okayish number, but I have to say, it was a lot more comforting when it was settling at 115/65. I'd gladly take a little light-headedness over increasing numbers.
Tomorrow I have more labs. Dr. G said if my protein was stable these week, she'd give me next week off from the pee-jug (would be just blood work) so I'm really hoping for steady numbers. This week's labs also include my second glucose tolerance test (one of those benefits of being AMA is getting to do it twice.) I also see the peri tomorrow. I have a growth scan and consult with my favorite peri in the practice. She thinks he'll up my growth scans to make sure the baby is responding well to everything going on, so this might get to be an even more regular activity. That is fine, though I hate that no appointment in the peri lab can ever be accomplished in less than 2 hours.
I'm staring down my next milestone, which is 28 weeks. The odds for survival and outcomes increase nicely at 28 weeks, though that's still seriously, seriously early for a baby to be born. Chello is still not allowed to come, but I am still counting every day as a blessing and each week as a celebration. Getting to see a third trimester will be exceptionally fun.
In the meantime, I'm trying to take it as easy as possible. I'm not confined to bed, just was told not to do anything strenuous, to be up no more than an hour at a time, and take it as easy as possible. That leaves a lot of burden on David, who is already feeling the burden of responsibility, which has lead to some tension. We could use some prayers of patience for both of us, I think.
My friends have been amazing. They're already starting to fill up my freezer will meals and provided some reading entertainment to keep me occupied. I might have gotten a little weepy today after a friend whose literary opinions I value brought me a bag of books. Bedrest can be soul-sucking, but the outpouring of love and support has kept it nourished anyway. I'm the luckiest unlucky gal around.
--Trish
As my last post indicated, Monday's labs showed an improvement in kidney function but a decline in liver. Specifically my ALT was up to 71. My OB isn't in on Wednesdays (when the labs came back) so the covering OB looked them over and sent me immediately back to the lab for repeat blood work. I then saw my OB on Thursday for my regularly scheduled appointment.
She was as wonderful as always, of course. She came in and immediately asked how I was doing, clearly meaning emotionally. I told her that I was holding it together okay, but that the day I had to come for steroid shots really sent me over the edge for a while. She was very sympathetic and hugged me. We kibitzed a while about some really annoying drama with the peri lab (at one point they told me they never got my lab results, but that they didn't care. They then apparently called my OB to yell at her because she had them and they didn't. Even though THEY ordered them and had her CCed on the results.)
Then she asked how my blood pressures had been at home. I was honest and told her that at home, they'd been quite good, a little higher (but not really high) at work. She shook her head and asked how I'd feel about being put off work. I told her it was fine. I certainly can tell a difference in the way I feel at work versus home, I can see it in the numbers, and frankly, when I'm averaging three trips a week to various labs or doctors, getting the time off work was getting challenging. We have short term disability insurance and we went into this knowing we would probably need to use it. I had hoped not to need it until much later, but we were prepared to do it when we needed. She felt it was time. We agreed that I would finish the week part time- I worked 4 hours Thursday and Friday and then be done.
She still thinks we can make it into the 30s for the baby. I told her that I had pretty much given up the idea of 37 (she ruefully agreed) but that I was still holding out for November. November 3 would be 34 weeks. Some 34 weekers go home, and even if they don't, USUALLY it's not a long NICU stay (believe me, I know 34 weekers have complications. Don't send me hate mail, please.) and she agreed. She thinks that's possible. Obviously I'd love to prove everyone (myself included) wrong and go longer, but that seems like a reasonable, hopefully attainable goal.
I spent my last couple of days at work tying up loose ends, getting my projects covered, letting everyone know I would be gone for a while, and doing paperwork. I took it as easy as I could while there and at home. My boss was obviously a little stressed at losing me, but really supportive about going. She is the mom of a former 32 weeker herself, having spent 4 months on hospital bedrest because of an incompetent cervix (she had previously lost a baby at 16 weeks to the same condition) so she is uniquely sensitive to my situation. There was mostly good-natured ribbing from my coworkers about being abandoned (though one particularly lovely soul demanded to know if I was "going to get fixed now" and when I told him that David was going to get a vasectomy, he asked "why, he's not the one whose body is all messed up?" Thanks.) and then I was off.
This weekend has been a little hectic. I had specific permission from the doctor to attend a couple of events I had already planned for, so long as I kept my feet up. Unfortunately my evening plans had to be cut short because my blood pressure was lingering at just barely under 140/90 and I had to get home and try to get get it down. Fortunately once I was really prone and quiet, it did, but it's been around 130/80 pretty much since then.
My OB had warned me that sometime between 25 & 28 weeks, BP tends to resettle closer to a normal pre-pregnancy pressure, which for me was 130/80. (That was my post-Robbie "normal." It never fully recovered after he was born.) I know that's an okayish number, but I have to say, it was a lot more comforting when it was settling at 115/65. I'd gladly take a little light-headedness over increasing numbers.
Tomorrow I have more labs. Dr. G said if my protein was stable these week, she'd give me next week off from the pee-jug (would be just blood work) so I'm really hoping for steady numbers. This week's labs also include my second glucose tolerance test (one of those benefits of being AMA is getting to do it twice.) I also see the peri tomorrow. I have a growth scan and consult with my favorite peri in the practice. She thinks he'll up my growth scans to make sure the baby is responding well to everything going on, so this might get to be an even more regular activity. That is fine, though I hate that no appointment in the peri lab can ever be accomplished in less than 2 hours.
I'm staring down my next milestone, which is 28 weeks. The odds for survival and outcomes increase nicely at 28 weeks, though that's still seriously, seriously early for a baby to be born. Chello is still not allowed to come, but I am still counting every day as a blessing and each week as a celebration. Getting to see a third trimester will be exceptionally fun.
In the meantime, I'm trying to take it as easy as possible. I'm not confined to bed, just was told not to do anything strenuous, to be up no more than an hour at a time, and take it as easy as possible. That leaves a lot of burden on David, who is already feeling the burden of responsibility, which has lead to some tension. We could use some prayers of patience for both of us, I think.
My friends have been amazing. They're already starting to fill up my freezer will meals and provided some reading entertainment to keep me occupied. I might have gotten a little weepy today after a friend whose literary opinions I value brought me a bag of books. Bedrest can be soul-sucking, but the outpouring of love and support has kept it nourished anyway. I'm the luckiest unlucky gal around.
--Trish
Wednesday, September 14, 2011
An Open Letter To My Body
Dear Internal Organs,
Listen, I'm sorry. No, that's not sarcasm, I am. I know I'm hard on you. I'm fat and that's just a hard life anyway, and then these last few years I keep overwhelming you with hormones and drugs and surgeries and it's hard. And four pregnancies, that's rough, too. I know. I'm sorry. I am.
But here's the thing - this is it. I swear to you, after this we're done. David has already agreed to a vasectomy, so I'm not even going to ask you for another assault to end my (admittedly limited..) fertility. We just need one more baby and then you never, ever have to deal with this shit again. I promise.
I know that with a baby comes extra blood to filter and the baby keeps kicking at you and stuff. It's hard to be nice. But she's just a baby and doesn't know any better, it's not her fault. I'm just asking you to be patient and chill out for the next couple of months and then you can have the next few decades for peace.
I've been trying to make up for all the extra work you're doing by eating really healthy. You might notice the drastic reduction in sodium lately, the leaner diet in general. Notice that even though we're currently 6+ months pregnant, we're actually down a few pounds. See, I'm trying, right? I'm just asking you to do the same.
Kidneys, I know this has been exceptionally rough on you. Robbie almost took you guys out but you rallied and healed up nicely afterward. I appreciate that. And your improved performance this week has not gone unnoticed. Your levels improved from 384 to 304. I really appreciate that. I'd love to see you really go for the gusto next week and maybe drop back into the 200s. You and I both know that's still not great, but I'm willing to negotiate considering all you've been through.
Now Liver, you and I need to have a chat. There is no excuse for your pitiful performance this week. You were holding pretty steady last week and that was great, but up to 71 this week? No, no, no. What do you have to say for yourself? You need to take a deep breath and do better. The lab took more blood today. You BETTER show improvement tomorrow. I haven't been taking any Tylenol and we certainly haven't been drinking anything, so there's really no reason for you to be so crabby. Remember last year when that surgeon came digging around in you looking for Gallbladder? Yeah, that was done for your benefit, asshole, so show some appreciation.
Blood Pressure, well, I know you're not an organ, but as an important factor in everyone else's health, I want to thank you for your cooperation. Please keep up (err.. down..) the good work.
Thanks,
Trish
Listen, I'm sorry. No, that's not sarcasm, I am. I know I'm hard on you. I'm fat and that's just a hard life anyway, and then these last few years I keep overwhelming you with hormones and drugs and surgeries and it's hard. And four pregnancies, that's rough, too. I know. I'm sorry. I am.
But here's the thing - this is it. I swear to you, after this we're done. David has already agreed to a vasectomy, so I'm not even going to ask you for another assault to end my (admittedly limited..) fertility. We just need one more baby and then you never, ever have to deal with this shit again. I promise.
I know that with a baby comes extra blood to filter and the baby keeps kicking at you and stuff. It's hard to be nice. But she's just a baby and doesn't know any better, it's not her fault. I'm just asking you to be patient and chill out for the next couple of months and then you can have the next few decades for peace.
I've been trying to make up for all the extra work you're doing by eating really healthy. You might notice the drastic reduction in sodium lately, the leaner diet in general. Notice that even though we're currently 6+ months pregnant, we're actually down a few pounds. See, I'm trying, right? I'm just asking you to do the same.
Kidneys, I know this has been exceptionally rough on you. Robbie almost took you guys out but you rallied and healed up nicely afterward. I appreciate that. And your improved performance this week has not gone unnoticed. Your levels improved from 384 to 304. I really appreciate that. I'd love to see you really go for the gusto next week and maybe drop back into the 200s. You and I both know that's still not great, but I'm willing to negotiate considering all you've been through.
Now Liver, you and I need to have a chat. There is no excuse for your pitiful performance this week. You were holding pretty steady last week and that was great, but up to 71 this week? No, no, no. What do you have to say for yourself? You need to take a deep breath and do better. The lab took more blood today. You BETTER show improvement tomorrow. I haven't been taking any Tylenol and we certainly haven't been drinking anything, so there's really no reason for you to be so crabby. Remember last year when that surgeon came digging around in you looking for Gallbladder? Yeah, that was done for your benefit, asshole, so show some appreciation.
Blood Pressure, well, I know you're not an organ, but as an important factor in everyone else's health, I want to thank you for your cooperation. Please keep up (err.. down..) the good work.
Thanks,
Trish
Tick Tock
I'm now 26w6d pregnant. It's a relief to be staring down 27. My next goal is 28 as odds for the baby improve a fair bit at that point. But I also feel a bit like a ticking time bomb. I have no idea how long my fuse is.
I have set about a sort of forced nesting. In an effort not to focus on the things I can't control - mainly the dangers of extreme prematurity- I am trying to focus on the things I can, at least to some extent.
I've done paperwork for our insurance, double checked my company's leave policy, arranged our finances, gone through baby clothes. This weekend I will order the co sleeper and the dresser for Chello. There are things that still overwhelm me. Child care for Robbie is top on the list. He will go to school every day, but thinking about the possibility of being in the hospital on bed rest for a long time terrifies me. I know that I wouldn't be able to see him every day. The hospital is just too far from home and Robbie needs a routine that wouldn't allow him to visit frequently. Just thinking about missing him makes me cry. And even after the baby comes, I know that with school comes germs and that can get very tricky with the NICU. It's one of those situations that we'll have to figure out when we know what we're dealing with. But that doesn't keep me from obsessing over it anyway.
Everyone has been incredibly supportive and kind and prayerful. I really do feel incredibly blessed. I am blessed with every day of this baby still in my womb, and by the love of those around me. Even my coworkers brought me to tears yesterday. When I walked into work as scheduled, everyone was shocked. I just smiled and said "I'm here. Still pregnant." and the room burst into cheers. They'd all seen me leave in tears on Thursday (when I left to get my steroid shots) and feared the worst. It was good to have a little celebration.
My facebook page is full of well-wishes and inquiries. Everyone wants to know what they can do. I wish I knew. I just keep asking for more prayers because truly, it's the only thing we need and really the only thing that will do any good.
I am feeling pretty good, overall. (You know, beyond the back-ache, insomnia and constant peeing.) I am noticing some changes that make me nervous. My feet are swelling most every day now. My blood pressure has crept up just slightly the last 2 days. I'm even more tired than I was before. None of these symptoms are outside the realm of normal for a woman who is 6 months pregnant, though, so I never know how alarmed I should be. I had more labs drawn on Monday, the results should be in tomorrow. I have another OB appointment on Thursday. We'll see what they show.
I am curious to hear with my OB has to say. She always has a way of calming me down but not snowing me either. I want to know what she really thinks.
For me, I'm still trying to focus on a baby in November. I have stopped even entertaining the idea of 100% full term, but I'm still hoping to surprise what is probably everyone and make it at least that far. November 3 would be 34 weeks and while that's still too damned soon, right now it feels like a year away. But even before I got pregnant, I felt like November would bring a baby. I thought it would be a baby for a friend who was adopting, but she got her baby in May (YAY!) so that leaves me. A November baby for me. Please.
--Trish
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