Wednesday, August 31, 2011

more prayers, please

Well, apparently it wasn't just my liver.
The peri lab called today and the doctor was also concerned about the level of protein in my urine. It was 279.

At my 12 week baseline check, it was 220, but apparently they didn't have record of that in my chart, so the last he knew was that it was 140 pre-pregnancy, so that was a fairly large jump. Either way, 279 is definitely higher than it should be. (Normal being <150.)

They want me to come in on Tuesday and have my BP checked and repeat all the labs again.

That was enough information to put me into a tailspin. As nervous as I was about the liver enzyme yesterday, having 2 things more out of whack than they should be was more than I could take. I called David to tell him the news and pretty much lost it on the phone.

David was great. Honestly, he took it a lot better than I expected. He reassured me that we will handle anything that is thrown at us, he doesn't want to see the NICU again, but we will do whatever we have to. I told him I was sorry my body was letting us down again and he shushed me saying there's no way to know what causes this, it could well be his genes at play, too. He reminded me that we married for better or worse and sometimes life throws "worse" at us. It was really what I needed to hear.

I still spent a good deal of the day crying and then telling myself to knock it the eff off. Neither of these lab values are horrifying. It's the trend that matters. My BP was still good today (115/60 in the afternoon, 120/80 this evening. Both quite good particularly considering the emotional mess I was all day.) I have an OB appointment tomorrow and I'm sure we'll discuss it in details tomorrow.

I'm 9 days from the point that I delivered Robbie. In looking back, my first sign of trouble with him happened at 25w1d. My feet swelled suddenly. I hadn't had any swelling at all up until that point. It wasn't even very severe. I actually thought it was kind of cute. Oh look- a pregnancy symptom. It improved over the weekend as I kept my feet up and hydrated. It was at 25w4d that the epigastic pain started. I was admitted to the hospital at 26 weeks exactly and he came at 26w2d. I'm really hoping that history does not repeat itself.

Normally, when preeclampsia reoccurs, it happens letters and less severely. So even if this IS the beginning of bad stuff, the hope is that it develops at a snail's pace and we can go a LOT longer. I really had my heart set on 37 weeks. I kept feeling strongly that the baby would come in November. Even if it was November 1, that would be almost 34 weeks. Any parent of a 33 weeker would tell you that's still too damned early, but as I sit here an hour shy of 25 weeks, 33 weeks is sounding pretty hopeful.

What I'm pleading for us prayers. Let my labs show improvement next week. At the very least, no decline. Pray for healthy kidneys & a healthy liver, for continued good blood pressure and health for my baby Chello.

She's been very active today and I've loved it. I love her so incredibly much already. The thought of her suffering through the NICU the way that Robbie did (or worse) devastates me. As I told David today, I just need our baby to be okay.

--Trish

Liver

Well, the labs are in. It took some doing to get them. The perinatal center was as helpful as usual (read: not at all) when I was a little confused that they weren't back yet. So I called my OB's office as I knew they'd been copied on the results. They were also as helpful as usual (read: extremely) and after one of the staff called and chewed some ass at Quest, they called me back with the results.

All were normal. Except one. My ALT (a liver enzyme) was slightly elevated. It should be between 6 and 40 and mine was 47. The nurse said that Dr. G was not concerned about that number, but would like to have it repeated in a week to make sure it wasn't getting worse. She confirmed when my next appointment is (Thursday) and said they'd give me the order then.

I immediately googled ALT (what DID people do before the Internet Age?) and found that that particularly enzyme is associated with a number of other conditions that I fall into. Obesity, fatty liver syndrome & Tylenol usage, specifically. So there are a lot of reasons that it could be a little high that don't mean HELLP. I tried to tell myself to chill out and wait for more answers. I took my blood pressure and even in the agitated state I was in, it was 120/75.

Less than 5 minutes after I hung up with the nurse, I had to join a conference call for a project I've been working on for a few weeks. I told myself that it was time to get back to work. But it wasn't long into the call before the tech I was working with commented that I seemed awfully quiet today. She sort of chuckled because both she and her work partner were really off their game yesterday and today it was the client and me. (The client had been up with his post-surgical puppy all night. We all had baby woes today!) Guess it's a rough week.  But clearly I wasn't putting on my game face as well as I'd hoped. I tried to rally myself a little more.

Fortunately Chello was very active tonight, which never ceases to make me smile. Even now that she's getting big enough to punch me in the stomach occasionally and make me feel like puking, it's still pretty cool. I told myself that I was otherwise symptom-free. By the point that my liver enzymes were elevated with Robbie, I was already hospitalized and near kidney failure. Everything else was fine, so it wasn't that. Relax, Trish, relax. I willed myself to feel it even though I was so tense that the muscles in my shoulders were burning.

As much as I tried, I couldn't help but think about this baby in the NICU. Surely we can make it to 25 weeks, right? That's still too early, though. I remember Robbie in the NICU when he was born. I remember the guilt I felt every time they pricked his heels for blood or peeled off another lead from his see-through skin. I remember his silent cry when they disturbed him to change a tube or roll him over so that his head didn't get too misshapen. You couldn't hear either of us crying- Robbie because of the tube down his throat, my weeping kept silent so as not to upset the other parents. I said a silent apology to Chello for anything she would suffer because we selfishly decided to get pregnant again.

By the time I left work, I had worked myself into quite a state of self-pity. All I wanted to do was climb in bed and watch crappy TV. My side was hurting (probably psychosomatic) and I just wanted to lay down. I got home and found that the cat had puked all over the bed. I had a temper tantrum and yelled to David about how all I wanted to do was lay down and now I can't even do that, all while stripping the bed. David busied himself helping and talked to me in a soothing tone. My tantrum had little to do with the vomit (though seriously, 90% of our house is wood floor. WHY can't they puke on a freaking solid surface?) and more to do with a different kind of injustice.

Finally I did lay down and watch crappy TV (latest addiction: Awkward. on MTV.) and then took a long bath and read a little while and seem to have worked through the worst of the self-pity. The truth is that I don't know what this lab results means. My blood pressure is still excellent (tonight's reading: 110/65) I'm not swelling, my head doesn't hurt, and all my other labs were fine. Whatever is going on isn't coming to a head tonight. And whatever does happen is out of my hands. Wallowing isn't changing that.

I worked on picturing my next peri appointment at 28 weeks. Then seeing 30. I needed to write myself a different ending. Not at 25 weeks or even 26. I want to see full term. I don't want tubes and wires and statistics and guilt and tears. We all, particularly Chello, deserves better. So that's what I'm thinking about tonight. I'm going to pray for a health liver and a full term baby. And I'm going to believe it can happen, even if my liver doesn't like it.

Trish

Monday, August 29, 2011

24w3d

Friday's peri appointment was good. Too bad there wasn't an actual peri there, eh? I don't know what the deal was, but after my ultrasound (more on that in a moment) I was dismissed. Pardon?

I asked if the peri wasn't going to come in and they said "There isn't one here today, did you have questions?" Again.. pardon?

I didn't have questions, but I had been told to expect labs at 24 weeks and I had been expecting to see Dr. B. The nurse said "yeah, we expected him, too." Pardon?

Seriously, I was confused. I get that things happen, but wouldn't it have made sense to mention that he wasn't in? I don't know. It was strange. And lead to us having to pour over my chart to see if Dr. Sunshine had noted which labs he wanted at 24 weeks, which he hadn't noted at all. So then I was going to have to wait until Monday when they could ask someone. Normally that wouldn't be a big deal, but since I knew one of them included a 24 hour urine, I really wanted to do it Sunday thru Monday so I didn't have to take my pee jug to work.

Fortunately God smiled on me and literally as I was checking out, Dr. B called to check-in (and I got to listen as she told him all about the patients she'd sent off to L&D, making me very sad) and she asked about the labs. "..patient here with a history of preeclampsia at 26 weeks, 24 weeks now.. said Dr. Sunshine told her labs, but there's no record of that... oh.. just order them.. oh.. okay.. alright.. all of them? okay..." :phew: She was really nice, but she really did act like maybe I was trying to get by with something. Maybe I'm running some pee-jug insurance scam. Who knows? All's well that ends well.

But back to the good stuff- the ultrasound was great. Baby Chello (have I explained the Chello thing? Our current baby names are Charlotte & Elliot, so I mashed them up and came up with Chello.) was really quiet that morning. Not a kick to be had all morning. It was a hectic morning (had a meeting with the daycare over the previous day's drama. All is better now.) so maybe I was just distracted, but seriously, I was starting to get stressed and the only thing keeping me calm was knowing that I was hours from a check.

As I was about 5 miles from the hospital, I started to feel a few kicks and as I was waiting to be seen, Chello started going crazy. I had to keep myself from giggling out loud in the waiting room because my belly was dancing. When the u/s tech came to get me I warned her we were about to get a show.

The tech was great. Sometimes they seem sort of irritated if the baby is really active, since it can be challenging to get a good still shot to make their measurement. This tech thought it was cute. I wish I could have her every time.

Chello looked great. Actually measured just a little ahead at 62%. Closer to 25 weeks than 24. She estimated the weight at 1 pound 13 ounces. I commented that was more than my son had weighed when he was born at 26 weeks. That lead to a moment that actually caught me off-guard. "Twenty six weeks? Wow. Did he live?" I answered that he had, he's 3, he's doing well. We then had the usual follow up conversation (How long was he in the hospital, any complications, yada yada yada.)

And then I laid there and thought about how truly screwed up that question is. Now, many friends thought it shouldn't have been asked, at least not in that way. And in hindsight, I do think it could have been asked more delicately. But I really wasn't offended. She works in a peri's office. She's seen a lot of things. She ended up telling me about her triplet grandchildren who were born at 28 weeks, so she probably has a perspective that few people do. But I thought "Wow. That's actually a legitimate question because it doesn't always turn out that way." A wave of sadness washed over me. It was a wave I hadn't felt in quite a long time.

While I will always feel sorrow about the way in which Robbie came into this world, it's not something that just eats at me on a daily basis the way that it used to. It's a little like telling people that my parents were divorced or my mom wasn't around. Yeah, that's sucky, but really, it just IS. It's part of our history, but not something to really dwell on. But all of a sudden, I felt myself dwelling a bit. It honestly stuck with me the rest of the day. Three years later and prematurity can still launch a sneak attack.

But back to the good stuff (again.) Chello was all over the place. Kicking and punching and wiggling around. She kept kicking her legs up by her face where it looked like she was trying to suck her toes or something. We laughed about envying that flexibility. I hoped that meant her abdominals are stronger than Robbie's were. (And I had her check the diaphragm again, too. Still looking good.)

Once they declared her healthy and took my BP (130/68. 130 wasn't the greatest, but the nurse was asking about the circumstances of Robbie's birth as she was taking the pressure, so I was a little agitated. It's been more like 115/65 most of the time.) and we play "Who's on first" about the peri, I was on my way.

The nice (if blunt) u/s tech burned my pictures on disc, so I can share them. I bring you.... Baby Chello!



Profile


Face
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I'm pretty sure she's about to give us the finger here.
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Arm and foot up by the face
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The weekend has gone fine. After Friday's acrobatics, Chello was very quiet the rest of the weekend. I broke out the Doppler THREE times today (there is a direct correlation to my level of anxiety and the use of the Doppler) because it was starting to really worry me, but tonight she's finally been active again. Maybe it's another growth spurt, I don't know.

I'm mid-pee jug and will have my labs drawn tomorrow. I'm hoping that all those results are normal and I can take a few deep breaths and feel better at least for a few days. Twelve more days until milestone 2. I think I can.. I think I can...


Trish

Friday, August 26, 2011

Failure

Well, he failed.
His hearing test, that is. Again.
Not really the news I was hoping to get today, but that's how things go, I suppose.

The question is what it means. There's some debate over whether he could actually hear and just not cooperate or if he genuinely couldn't hear. I, personally, think it was a little of both. He passed all the sections involving human speech, but when it came time the tones, he failed all in both ears.
The tones they were using were a bird & a train. I'm not sure that was the best way to go because both of those actually excited him and he kept saying "Mommy! The choo-choo is coming!" "Mommy, it's a birdie!" as we all stifled our chuckles. By the end of the very long hour, he was telling me that the orange choo-choo was coming on the train tracks. At least he has an imagination.

The thing is that I have noticed that he seems to have trouble hearing some things at home. If the TV is turned down kinda low (I can hear it fine, but it's quiet) he'll tell me it's broken and then cry if I don't fix it. But he seems to be able to hear us whispering just fine, and can hear sounds far in the distance just fine. I didn't even realize I could hear a train from our house until he pointed it out one day. I had just never noticed the faint whistle blowing.

The ENT wants to do a sedated hearing check sometime in the next month (waiting for a callback from the audiology lab to schedule that) to see what it shows. Right now, he showed a "mild hearing loss" in both ears. If that proves true through the sedated check, then it "defintiely needs to be addressed." We really just hope he passes.

Honestly, I came out of the appointments feeling pretty defeated. I told myself 100 times that there are far worse things than mild hearing loss. Hell, we've faced far worse things than mild hearing loss. But it just isn't something anyone wants their kid to go through. And honestly the thought of trying to convince a 3 year old to keep hearing aids on is daunting. I KNOW that lots of kids do it and we WILL get through whatever may come, but right now it just seems overwhelming.

The rest of the day didn't go a lot better. I got Robbie to school only to be scolded rather rudely by the daycare directly for getting him to school right at nap time. She wasn't aware he was going to be late (I had told his teachers.) and was apparently pretty pissed about it. Well, considering I was already in a bit of a mood, it didn't go so well. I managed not to slap anyone or cuss them out, but I definitely said my piece before the day was done. (I actually left and called back because I needed to contain my temper before I responded.)

In the end, it may work out well. In what I think was an attempt at peace-making, we got the notice tonight that he's being moved to the 3 year old room as of Monday. There was some debate about whether or not he could go because he's not potty trained yet, but I guess it's official. He's joining his peers. I hope he does better with them than he did in the previous room, but I'm a bit nervous about it as I always am. I want him to be liked and accepted and to enjoy it.

Work was just kinda crazy. I literally walked in the office into the middle of a bunch of bickering and that lasted most of the day. I was in no mood to chat for most of the day, so I just kept to myself, but I had to marvel that the whole day sort of took a wrong turn somewhere for not just me, but it seemed like everyone around me.

Hopefully tomorrow is a better one. I have a peri appointment in the morning. I believe I'll be getting a number of labs to check on my body's function and will have a growth scan for the baby to make sure she's growing appropriately. I'm doubting I'll have all the results (except the scan) until Monday or Tuesday since I'm fairly certain I'll have the dreaded pee jug (a 24 hour urine collection) to fill as well.

I'm hoping that if those come back normal, though, that that will ease some of my concerns, though. Though I also worry that they will come back bad and anxiety will rule again. Only time will tell.

Trish

Thursday, August 25, 2011

Milestone #1

24 weeks.

When we decided to try for another baby, my biggest fear was very clear in my mind. It was getting sick before the possibility of viability.

I don't remotely feel like 24 weeks brings any assurances of survival. This baby is NOT allowed to come yet. Not for a good long while. But when I thought of The Worst, the image in my mind was very clear.

I could see myself begging doctors for steroid shots, begging them to try to save him or her. I had all too clear an image of the sad but resigned look on their faces as they explained that there was simply no hope.

I know that if I got sick tomorrow, the baby could very well not survive even the process of being born, let alone the complications of prematurity thereafter. I'm by no means throwing a V-day party.
But I am happy to mark one milestone off the list. At this point, the medical professionals would at least try.

I have sixteen more days to go to reach the point at which Robbie was born. From moment to moment, I think "we've got that in the bag" or "sixteen days is a long freaking time..." I'm a little concerned how that milestone is going to feel. When I picture reaching it in my mind, I get very emotional. I was there, but it still seems unreal to me that Robbie came at such a close stage that I'm at now. This baby is very likely about the size that Robbie was when he was born (he was closer to the size of an average 24 weeker.)

I'm feeling so much movement these days, habits becoming more clear, my attachment growing stronger every day. And to think of this baby struggling the way that Robbie did is terrifying. Knowing how amazing Robbie is now and that he did survive all of that is somewhat comforting, but I do still sometimes stroke the scars on his stomach, his feet, his hands and inwardly weep for all that he endured. I don't want this baby to suffer the same way.

So I ask for continued prayers. For the next 16 days to speed by uneventfully.. along with another 13 weeks. And if you're in the praying mood, how about another one for Robbie. He's having another hearing check tomorrow. The last one, given before his 2nd set of ear tubes was placed, showed moderate hearing loss. We're hoping the tubes have cleared that up, but we will know for sure tomorrow. He could use a little boost.

-Trish