transcended.net

Things aren’t going the way they were supposed to. Our baby was supposed to go into the NICU for a few days, learn to feed and then come home in two or three weeks.

Somehow we’ve gone from that, to him being the biggest mystery in the NICU. The pediatrician and neos in the NICU have called consults from hematology, neurology, and the GI and liver departments (oh and anesthesiology for one procedure). He’s had two brain ultrasounds, a liver ultrasound, an MRI, so much labwork I can’t even begin to list it, and now they’re talking about doing a spinal tap.

A spinal tap. On my six day old, tiny little baby boy.

Today I had my first uncontrollable weep in the NICU waiting room as I spoke with the NP from the GI department. Then more sobbing in the waiting room at the MRI. I shuffled through the hospital in pajamas clutching a box of tissues so I wouldn’t have to see the pity and curiosity in the eyes of everyone I passed.

There’s talk of possibly transferring him to Stan.ford if his liver doesn’t start to improve in the next 24 hours. Apparently they specialize in livers there or something.

I just can’t quite figure out how we’ve gotten here. It feels like I’m trapped in a nightmare. Please? Why can’t this just be a nightmare? And I would wake up and take my healthy baby home like all the doctors were telling me would happen soon just three days ago.

Part of me just wants to shrivel up and die.

I’m so sorry baby. I should have tried harder.

I’m not even sure where to begin with all this but I’d like to try and get it all down before it starts to fade. These past few days have been a blur, days and nights have melted together and everything still doesn’t feel quite real.

That Titus has been in the NICU has definitely contributed to that feeling. I had a baby, but I don’t have a baby with me. I had a baby, but I’m not caring for a baby. I visit a baby in the NICU and the nurses tell me how he’s doing and I delight over details like knowing he took his whole feed by ni.pple but I wasn’t there to see it. I ask the nurse if it’s okay to hold my baby and they set him up and hand him to me and I hold him and I don’t want to let him go but I have to go pump so I reluctantly give him back and they tuck him back into his isolette while he whimpers and cries at being disturbed and then I shuffle back to my room with no baby.

All things indicate that T is a strong, healthy baby, what’s wrong with him is from being inside me, exposed to my medication. Or possibly, exposed to my stupid antibodies, but the consensus is that it’s most likely my meds. They think it should clear up as the drugs leave his body but in the meantime it seems his bone marrow is being suppressed leaving his platelets and WBC dangerously low. This morning they said it seems like he might have an infection because they started having to give him some air and heating his isolette. They had to prick his feet again and they wouldn’t stop bleeding because of his low platelets.

I can’t even think about this without crying. Everything that’s wrong with my baby is my fault. I’m the reason he keeps having to get his poor little feet pricked and all these tests done and why his daddy can’t hold him (Paul is sick and with his WBC so low they don’t want him near anyone who’s remotely sick). I’m supposed to protect him and yet my baby is suffering because of me.

I’m already a failure as a mother. My baby is in the process of failing his third NST in three days (yes, I’m distressed enough to blog from the phone) and the nurse is talking about going to get Dr. MFM to come take a look.

Trying very hard not to cry right now and mostly failing.

So…where to begin. Well, it turned out that I didn’t need to think about how to bring up stopping work after all because that was pretty much decided for me after yesterday.

I think I definitely overdid it a bit with all the walking on Christmas Eve but Christmas Day we largely took it easy. I did spend about 40 minutes on my feet waiting for a table at dim sum in Chinatown but right after we got home, I spent the next couple hours resting in bed while Paul started cooking. I went back downstairs around 3pm and watched him cook for awhile, and then made the critical mistake of attempting to wrap BIL’s gf’s Christmas present on the floor of his parents room. After that landed me with major contractions and shooting pain in the v.ag I gave up and put it in a bag with some wrapping paper covering the part that was sticking out. Then I went back to sitting and doing nothing.

Around 5pm though I noticed that my uterus was extremely tight. It didn’t appear to be contracting though, just constant tightness that would sometimes actually hurt a bit in my abdomen and make my back feel sore. The discomfort seemed to come and go, but since the tightness was constant I thought it might be muscles stretching as I’ve read can cause a constant tightness as opposed to contractions. I’ve actually had this before sometimes when I’m walking around for awhile and it always goes away once I’m able to sit down and rest so I figured once I lied down it would be okay.

Unfortunately it wasn’t until about 9:30pm that everyone was finally on their way and Paul had deemed the kitchen sufficiently clean enough that the rest of the mess could be left for the next day (I didn’t clean, just hung out with him while he did). I went upstairs and chilled out in bed expecting the tightness to go away, which it did. Kind of. Until I realized it was no longer constantly tight but instead happening every 8 minutes or so. It wasn’t uncomfortable as long as I was lying down (although I did feel some pressure down there during each contraction) but once I got up to pee during a contraction and my back felt a bit “off” (I described it to the on call nurse as a 3 out of 10 on the pain scale, so not super painful but just noticeably uncomfortable). During this time I made sure I was constantly sipping water.

After this went on for about an hour or so I figured, okay, given my blood pressure issues, etc., it’s probably time to at least call the urgent care line and see what they wanted me to do. Of course, they wanted me to come in and I felt awful because poor Paul has been so busy getting the house ready for his parents visit and then cooking all day that he was exhausted and we both were supposed to work the next day (today). By the time we left it was about 10:30pm and I actually offered to go myself figuring that once I got there they’d probably calm down and they’d tell me it was all in my head or something but Paul just looked at me like I was crazy and of course went along.

As far as I can tell we were the only ones in L&D triage that night. The urgent care line had already called ahead and let them know I was coming so I was in a room within minutes. The nurse asked me a few questions and seemed surprised that I had made it 32 weeks with this being my first visit, she said usually first time mama’s have at least a couple visits much earlier in their pregnancies. This made me feel better that even if this turned out to be completely dumb, they were used to it anyway.

Unfortunately, they quickly confirmed that yup, the contractions were not in my head, in fact they were a lot closer together than when I was at home, I believe sometimes coming as close together as three minutes apart, although she said it looked like the range was anywhere between 3-8 minutes. She called the on-call doctor in my OB group who requested that I be checked out by the in-house OB who was on-call that night. More waiting and monitoring contractions which eventually slowed down back to where they were at home, which was once every 8 minutes. My blood pressure was, of course, very high – I think 140/90 and climbed higher before it eventually started to go down as I got sleepy and more used to being there.

The on-call OB came in and she was very nice as well. She made it sound like my contractions were slowing down but I told her they had actually increased and just slowed back to where they were when I was told to come in. She decided to do another ffn even though I just had one done about a week and a half ago and then she pulled out good ol’ Wandy to check my cervix. I was honestly expecting it to be about the same as my last ultrasound but she immediately said it looked like it was only about 1.7cm now. Then we watched it actually grow longer on the screen and she exclaimed that I have a dynamic cervix because suddenly it was 2.5cm but she was sure the 1.7cm measurement had been right at the time, she looked at the contraction monitor and it turned out to be that that was while I had been having a contraction. We watched it continue changing on the screen and measured a couple more times and it was 1.9cm and then 2.2cm. So basically even the longest, non-contracting measurement was still 0.3cm shorter than my last shortest measurement.

This result earned me a cervical check and again I was surprised when she said I was about 1cm dilated. She did however say that the cervix felt much thicker than it looked on the ultrasound and that it was still quite high and the baby appeared to be quite high – all good signs that I was not likely to deliver in the very near future. She said they would wait for the ffn results and then call the on-call OB in my group again to see what we should do.

The ffn results finally came back about an hour later and were negative. Big sigh of relief. However, my on-call OB still wanted me to get the steroid shots for lung maturity just in case (I’m thinking her rationale is that if my bp keeps climbing and they need to induce for pre-e they will have already gotten this out of the way) and then as a last minute add on they decided to give me a shot of terb since I was still having those contractions every 8 minutes and they didn’t seem to be getting further apart or stopping.

Looking back it really felt like they just didn’t want to send me home while I was actually contracting but I really did regret the shot after I got it. The nurse said it would only work for about an hour or so and the shot made me feel TERRIBLE. So jittery and my heart felt like it was beating out of my chest. I couldn’t help but wonder how it was making poor little Cheeks feel even though his heartrate still wasn’t all that high on the monitor. They watched me for about 20 minutes and let me go since I went the final 15 minutes without a contraction. The terb made me so jittery I couldn’t sleep for about an hour after we got home (we got in the door at 2:30am) which left me plenty of time to google all the scary side effects and opinions on giving it to women for preterm labor. For the record I plan to turn it down if they try to give it to me again, particularly if they offer me the oral version since the FDA has apparently banned that (not the injection though) for stopping PTL.

Interestingly and coincidentally enough, the medicine I was prescribed for my bp issues is also used to stop/slow contractions, so I guess I’ll be continuing on with that for now despite it making me feel pretty crappy. The doctor said that should stop the longer I take it so hopefully he’s right.

The in-house on-call OB and nurse at triage seemed pretty sure I would be put on bedrest for the rest of the pregnancy by my regular OB who I luckily already had an appointment scheduled with today and told me definitely not to go into work in the morning. I felt bad because I was only one of two people scheduled to be in so if I didn’t go in there would be one person alone there but after sleeping at 3:30am there was no way I’d be useful in the office anyway. My coworker was super understanding.

I spoke with Dr. MFM who I was actually supposed to call this morning anyway about my blood pressure and filled him in on what was going on with the contractions. He said to talk to Dr. OB about it but definitely no work for the rest of this week at least. He called me back later in the day after he talked to the lab about the tests I had done on Friday and said that since my C3 was low at 70 and he didn’t recall it being low previously in the pregnancy (he was at home and I’m assuming he didn’t have my chart) he thought this was likely a lupus related issue more than pre-e.

This really didn’t feel/sound right to me as I was pretty sure my complements are always low, they just get REALLY low when I flare, and I have had very minimal joint pain whereas joint pain is usually the first thing I can actually feel when I’m flaring. Luckily when I asked him about my 24hr urine result he realized the lab hadn’t given him those results so he said he was going to call them and call me right back. During that time I pulled up my app from Dr. Rheumy’s clinic that actually shows me all my lab results (ugh, I like Dr. MFM a lot but why can’t they be more tech savvy!) and sure enough my C3 was 53 in May (right before I got pregnant) and 67 in August. So as I suspected 70 was actually on the higher end of my normal range. I let Dr. MFM know this when he called back and he pondered for awhile but clearly he was rethinking his conclusion that this was a lupus flare when that clearly doesn’t make sense in light of MY normal range.

He told me that my 24hr urine result was 980, and I’ve read that the cut off for mild pre-e is 300 so I was a bit freaked out by the number but he said it wasn’t THAT high, just high-ish. I don’t really know what that means but when I saw Dr. OB later in the day he sort of gave me the same message so I guess it’s just not at a level where they freak out and hospitalize me, they just watch closely for now and pull me out of work to try and reduce all potential stress factors.

Dr. MFM did in fact say to scratch his original plan of upping my prednisone to 20mg and instead stick with my current dosage. He decided to have me rerun labs this Friday and see him on Monday to see if things are stabilizing or continuing to get worse. Also, he said I could go into his office for the second steroid shot for baby’s lungs, which I did.

Anyway, after making it through my very nervous dad driving me through the city, my mom interrogating Dr. MFM’s nurse and then Dr. OB, the two actual visits themselves and one more shot to the bum I was feeling pretty stressed out by the events of the day. Which I’m pretty sure is the exact opposite of how I’m supposed to be feeling. I emailed my group at work and my bosses and plan to call HR tomorrow. I asked Dr. OB if I can go in for a half day to tie up loose ends and he said keep it to a couple hours JUST to tie up loose ends and not to work so I’ll probably do that this week or early next week or something. I feel like I won’t be able to relax until I feel like work is at least as squared away as it can be and I’m not leaving people hanging.

I guess I’m still processing everything that happened today too and that’s also why I feel so stressed right now. The medical types all seem to think we can keep things going to 36 weeks which appears to be the new goal now. Outside of the doc and nurse in triage, my regular care providers seem much more concerned about the pre-eclampsia symptoms than the cervix/contraction thing. I think the reasoning behind that is sometimes contractions and cervical changes can start happening without anything ultimately REALLY happening for weeks but as bp and protein in the urine start to increase they generally continue doing so, the question now is will it happen gradually over weeks (which is the hope) or much quicker than that.

Anyway, that’s what’s been going on over here. Officially on home-rest, luckily not full-blown bedrest. I’m free to move around in the house as needed and even wander outside provided I take things very easy (i.e. no walking around for extended periods of time but going somewhere and sitting is probably ok). My days just need to be focused on stress reduction as much as possible and not overexerting myself physically but Dr. OB said there’s no reason I should feel confined to the bed. I can’t say I’m not glad to be done with work for the rest of this pregnancy, but I do kind of wish I had more of a heads up it was coming so I could have prepared myself for a handoff a little better. Oh well, it is what it is and I’m trying to put work out of my mind asap.

Time to focus on me and little Cheeks making it through the next four (hopefully five!). Speaking of Cheeks he was super active throughout the entire 2+ hours of monitoring. He kept kicking at the monitors and squirming away from them and the nurse kept pointing out how much he was moving (demarcated by black boxes on the readout). He looked great during the whole session, which was the real reason I had decided to go in in the first place – because I was worried the contractions could be causing him distress somehow. Then in typical mommy guilt fashion I felt bad that he seemed to hate the monitoring so much and here I was subjecting him to it.

Anyway, really hoping easing into being at home will lift me out of this stressful funk I’m feeling right now…

Given the utter lack of posts for the past 2+ months I suppose it goes without saying that I’ve been a terrible blogger.

Or maybe I was just on a break?  Yes, that sounds better doesn’t it?

Since it’s actually been strangely stressful trying to figure out what to post after so much silence, I’m just going to dive straight into the deep end.  I’ll figure out how to do this again.

I’m not having a good day today.  I threw up last night before bed and again after I woke up this morning, hence the staying home from work and posting in the middle of the day.  Before anyone gets any crazy ideas, I’m definitely not pregnant.  I know this because like the pee-stick addict that I am, I did test right before I got my last period a couple weeks ago (it was negative, obviously) and my OPK today was positive after having been negative the past few days.

So yeah, we are not TTC yet but I already have a problem with peeing-on-things, so next month when we are (hopefully) actually allowed to TTC should be really interesting.  Obsessive might actually be the word I’m looking for here.

Anyway, outside of feeling like garbage today, for the most part I’ve been doing pretty well physically.  I am now completely off the Cellcept and solely on Imuran as of the end of February.  Initially my labs were showing an increase in my AST/ALT numbers (liver enzymes) which could have been bad, but then they started to decrease and now seem to be holding steady at just a touch above normal (which both doctors agree is fine as long as there is no trend upward, right now they are at 44 and 97 respectively).

I think my body is actually tolerating the Imuran better than it did the Cellcept because a lot of gastrointestinal issues I had before have suddenly disappeared.  It never really occurred to me that they were being caused by the Cellcept because I’d had them for so long but, I did take Cellcept for nearly eight straight years, so my guess is that it started happening slowly over the years and I didn’t make the connection.  When they put me on the really high dose after my last flare, I did have terrible stomach issues so it makes a lot of sense now that I have the Imuran to compare to.

I’ve also been closely monitored (as the vein in my right arm can attest to) and am showing no signs of the rare blood disorder that Imuran can cause.  I am mildly anemic, but that’s kind of always the case and it’s not getting worse (again it’s the trend that my doctors seem to care about).  Actually, I guess my anemia is so “meh” compared to when I’ve flared in the past that neither of my doctors have even mentioned it to me (another reason I always request to be cc-ed on my lab results).

I am trying really, really hard to be all care-free and lackadaisical and actually do what I always say I want to do, which is leave this in God’s hands.

I am, as usual, mostly failing.

The impatient, control-freak in me has been obsessively studying my period tracker notes and google-ing things like “fertility foods” and “how to conceive quickly.”

I know none of this is actually helpful.  None of the google searches have come up with anything I don’t already know from years of reading infertility blogs.  I suppose if it was as simple as doing a google search, there would be no IF blogs at all.

And while it is somewhat comforting knowing that I have pretty clear signs of ovulation each month, I know (also from reading IF blogs) that this doesn’t really guarantee anything.

(But yes, it is a small source of pride for me in looking back on all those notes, that wow, my body is actually probably doing one thing right!  Yay!  Where’s my cookie?)

The truth is, I’m pretty disappointed in my inability to just let go.  I feel like the lesson God has been trying to teach me over the past three years – that things happen in HIS time and not mine – hasn’t sunk in.  And I’m kind of afraid of what that means.

As I mentioned above, we’re one month away from being cleared to TTC.

Four short (endless) weeks away.

I vacillate between hope and joy, and fear and anxiety.  Every time I start to feel those first two feelings, I can’t help but think about the fact that two years ago, I was also so close and then everything fell to pieces.  It’s almost like I have PTSD about being back in this same (emotional) place and I can’t help but feel like it’s all going to slip away again.

And it occurred to me the other day that in my mind, I’ve consistently viewed being allowed to TTC as the finish line, when in reality that’s like the one mile marker of a marathon.  I’m so far from the finish line it’s not even funny.

If this read like a spectacular ramble, that’s because it was.  It felt really good to get some of this off my chest, I’ve been wanting to write but the task just seemed so gargantuan for some reason.  I do have a lot of things I want to write about so hopefully now that I’ve broken the seal, it’ll be easier to come back.