The Bad, the Good and the Inevitable

THE BAD: 
First Betamethasone (steroid) shot at 2pm yesterday (to speed up fetal lung maturity in case of preterm delivery) = slight decrease in fetal movement and fetal heart rate = me scared shitless and annoyed that I was not informed of this earlier = me frantically researching it last night = waking up every two hours to see if she is still alive = humungous headache this morning, but thankfully, a live, active baby.
Second Betamethasone shot at 2pm today = anxiety = another sleepless night


Side note: I think we need to invest in one of those $3000 Tempur-pedic mattresses so my poor, hardworking husband can get some sleep. Ya know, the ones in the commercial where you can jump up and down on the bed with a full glass of wine sitting on the other side?! So, when I'm up at 12, 2, 4, 6 and 8 am shaking my belly, he shouldn't feel a thing, right?


THE GOOD: 
From 32 weeks onwards, the baby should have heart rate accelerations to 15 beats above resting heart rate, for 15 seconds, every 20 minutes or so to show that she is "reactive" (this concept is still a bit of a conundrum to me. Isn't she reactive if I poke my belly and she moves? I guess it's more of a reactive heart rate thing though since heart rate doesn't always increase if she moves.). Anyway, she was uncharacteristically sleepy as I was doing my monitoring yesterday (thank you, steroid shot...), so I told Andreas to come talk to her. The minute he started talking, her heart rate shot up from 145 to 170! Isn't it incredible that she not only recognizes her daddy's voice, but that she responds with an increased heart rate! C'est complètement incroyable! 


THE INEVITABLE: 
I miss Shiloh profoundly. I wish she were here to experience this all with us (not all of the drama, of course. If she were here, there wouldn't be any drama!). Especially because people are constantly asking if I have other children, how old they are and what sex they are. I always say that I have a daughter, that she'd be almost 2. People never pick up on the past tense though. It's just as well. I always end up crying and running away if I have to talk about her not being here.


I'm in awe of the fact that I'll be celebrating her 2nd birthday- alone (sniff, sniff)- in just 5 days. It feels like an eternity without her, but it also feels like she was born just yesterday. Time is so strange. In reference to the bizarreness of time, I found this quote that resonated with me: "The flower that you hold in your hands was born today and already it is as old as you are." -Antonio Porchia, Voces 1943. It hits home.

It's all good.

I'm feeling really tired again lately. Maybe lethargic sums it up better. I finished up my teaching over the last two weeks and it seems that now, since I have a bit of free time, my past insomnia is hitting me like a ton of bricks. It's OK though, as I have a week to recoup before I start teaching again. 

Things have been going well, luckily. I had a bit of a scare the other day because I couldn't comprehend what I was seeing on the monitor (continual acceleration in heart rate up to 195 for about 10 minutes), but I had it explained to me by two very competent doctors, so I'm relieved. Originally, I believed the monitoring was stressing me out more (due to episodes such as the above), but I now realize that it's actually allowing me to sleep more soundly (and less fitfully). 

I had my two ultrasounds and NST on Friday. The baby is in the head down position and the cord is only between her legs. She has been having a few, very mild cord compressions, but nothing compared to what it was when the cord was draped around her neck. I'm hoping that she stays head down so she doesn't create any new loops. I'm currently 31 weeks, which means that I get my steroid shots next week (32 weeks). 

I'm thrilled. I'm still taking things day by day, but it seems to be going more quickly now. I can't wait to have her healthy and alive in my arms. Let's see if I can make it to 37 weeks.

A break from all the negativity

I've been feeling pretty good the last few days. I was told that the nuchal cord around this baby girl's neck has been resolved, for the time being at least, so I'm not currently having cord compressions during monitoring (although the cord is still between her legs). I really hope it stays this way. Dr Collins did say though, that the critical time is 32 weeks where she goes into the head down position. We shall see. I'm attempting to stay positive.

I've also been really distracted with teaching over the last week and will continue to be until mid November. I've been going full force: Mondays to Thursdays 12-5.30pm, and on Fridays, I have my standing doctors appointments. I find that this distraction is beneficial to my sanity, and I'm still able to pay attention to the baby's movements during the day. So, yea, things are looking on the up and up. I've been reflecting on the concept of chi/qi lately: "with our energy, emotions, intentions, we can directly influence our environment", and trying to incorporate it into my everyday on-goings. I think it's working for me.

Non-stress testing is so stressful

I started my non-stress testing today at the peri's office. It's pretty much exactly like the home monitoring I do at night, except she also does an ultrasound to look at amniotic fluid levels. I asked her to look at the cord as well (which is what I care about the most). Long story short, the nurse seems not to know her ass from her elbow. She attempted to evade my questioning with smiles and positivity. I let her off easy. This time. I feel so frustrated. Silly me. I thought I'd get more comfort from these weekly tests. I can't seem to catch a break. Or maybe my expectations of the medical community are just too high. Whatever it is, I'm so tired. 


*On a positive note, I've been feeling kinda sexy lately. Sexy at 30 and at 30 weeks. I'm trying to come up with one positive thing a day, however small. Here's mine for last week and for next: sexiness. Check me out. Bow chicka bow wow.

Peri schmeri, who needs em?!

My Friday appointment with the peri was ridiculous. I feel like every time I get information from one OB, it's completely contradicted by another. It leads me to believe that, instead of being lead by fact, they are simply being lead by opinion. Some OBs are just stuck in their ways, won't venture outside the box, or are too lazy to keep up with current research. Blah. I've had it. 

Nevertheless, I feel compelled to share a little about some of the things my peri was saying while at the appointment. And for the record, I will also say that I came into the appointment under the pretense of decreased fetal movement due to cord entanglement (which I said for billing purposes only, although she is entangled in her cord).... well, they kept me waiting in the lobby for over an hour. Now what does that tell you? At any rate, doc wasn't surprised to see me. I think I give him so much grief at every appointment, that he just expects my visits once a week. One of the reasons I am able to give him so much grief is because I'm not one of those acquiescent, naive moms who takes everything he says as kosher. I'm a PhD student in Biology, so I know what research is and how it's conducted. He can't be blowing smoke up my maternity shorts. 

The appointment started off as it typically does- I relayed my worry about the cord being wrapped around the baby, said she's having decreased movements, he starts the ultrasound, confirms where the cord is (same place as Dr Collins found it), and then launches into his well rehearsed speech about how everything I'm seeing and feeling  (regarding cord stuff) is normal. "The cord can't be floating in front of the baby the entire pregnancy", "The cord placement is totally normal- we see it draped over the baby's neck and between the baby's legs all the time", "The so called cord compressions you speak of are normal in every pregnancy- they aren't cord compressions, rather the reaction of the sympathetic and parasympathetic nervous system to a halt in movement".... I had made the mistake of telling him that I flew to Louisiana to meet with Dr Collins, who has been studying cord accidents for over 20 years, in order to start the home monitoring. He called Dr Collins a "quack", "not a real OB", the list goes on. I couldn't believe the statements that were coming out of his mouth. I even photocopied all of the paperwork Dr Collins gave me regarding cord pathology, but the peri refused to take it from me. I went into his office and left it on his desk, telling him that he needed to look Dr Collins's Pregnancy Institute website up and read all of his peer-reviewed studies. He ended the conversation by saying, "any quack can have a website".

That was enough for one day. I felt like I was leaving the circus. I did march on up to reception though and make weekly appointments for non-stress tests and 2D ultrasounds for the next 5 weeks. I will also be getting my steroid shots and an amnio before 36 weeks. I will have this live, healthy baby in my arms, even if I have to personally mow down the entire OB community to get my way. Ain't nobody gonna hold me down.

If he says no, just come to me.

I had a great appointment with my OB this morning. Essentially, she said that if my perinatologist won't do something I think I need to have (for example, a non-stress test before 32 weeks), we will go around him. "If he says no, just come to me"--sweetest sound to my ears. She's willing to do it all- NSTs whenever I want, checking me into the hospital for as long as I want, giving me steroids to help mature the baby's lungs, giving me an amnio at 32 weeks to check lung maturity, helping me go into labor... she's so freaking awesome. I also got my husband to call that administrator and get the DL on my account info and *exactly* how to use the home monitor.


Ah. I've momentarily been put as ease. I can breathe. Thank goodness. I was ready to check myself into the loony bin.

Quick update

I've been battling with this home monitor since Sunday afternoon. Dr Collins said it would take a week or so to get it 'working smoothly', and I had no idea what he meant (how hard could it be?!) until I actually tried to transmit a file. Problems I've encountered thus far: not having a landline to hook the modem up to (who runs things through landlines nowadays?), keeping a consistent heart rate with that huge probe doppler thing (it's pretty clumsy for a hospital grade piece of medical equipment), not being able to track down the administrator that sets up my account (he's so damn elusive!), not being able to transmit the files properly (why is the machine shutting off and turning back on by itself?), not being able to login to my account (is it even set up yet?)... blah, blah, blah. 

Nonetheless, there are two pieces of good/decent news: 1) I must have done something right with the transmission (after having multiple tantrums and frustration cries) because Dr Collins was able to successfully view my first strip (although he didn't get the text message alert notifying him that I have uploaded a strip- administrator, where are you?) and, 2) the baby's heart rate sounded good. She continues to have some cord compression (so it's somewhere on her body), but Dr Collins does not consider them 'decelerations' per say. I guess I have to relish the good news, even if they are just minor things. Man, I think I need a glass of wine....


N.B. This is not my strip (cos I can't access mine right now!). This strip shows a major deceleration and would require delivery.

It's official. Thank G-d for Dr Collins.

Well, it's official. Officially sad and tragic actually. Cord issues DO recur in subsequent pregnancies. I'm living proof (amongst the other 1200 women who've been studied!). For those of you who aren't aware, my beautiful and flawless daughter, Shiloh, was born sleeping at 39 weeks, 5 days gestation due to an umbilical cord accident in Oct 2008. The cord was wrapped so tightly once around her neck (nuchal cord) and once around her body (body loop) that my OB couldn't even slide her fingers underneath it to free Shiloh after she was born. Her arms and neck were indented from the pressure of the very organ that was meant to sustain her life in utero. How ironic. *As I write this, tears are streaming down my face. Did this really happen to my daughter?* I miss her terribly.

Now, I'm pregnant with number 2. A little sister for Shiloh. I only wish she were here to experience it. I've been conflicted the entire 28 weeks. I'm scared out of my mind (which I previously thought was unsubstantiated, but due to prior experience). I wake up 5 times a night to make sure she hasn't passed away during my sleep. I freak out and think the worst if she is moving too much or too 'hard'. I contemplate running to the hospital every time she has the hiccups (yes- hiccups are ONLY related to cord compression. If your baby has hiccups, the cord IS being compressed one way or another, at least at certain times). Sometimes, when I'm really deluded, I even think this baby is Shiloh, that I've been given another chance with her (I haven't told ANYONE this before, and I feel awful just saying it). Yes. I'm a full-blown nut job and it's starting to wear thin on my being.

But the point of this post is actually to write about my appointment with Dr Collins. I just returned from my trip to Louisiana (a few hours ago!) to meet with Dr Collins regarding the home monitoring for this baby. He is such a passionate, caring man and one that truly wants to rid the world of unnecessary infant death. So, he gave me an ultrasound and hooked me up to the monitor for 30 minutes to check the baby's heart rate and to see if I am having contractions. I'll just get to the point- he confirmed my worst fears. There is cord compression (the baby has been having hiccups 2-3 times per day for 5-10 minutes each for the last 2 weeks) and she’s even having minor decelerations. The cord is possibly being compressed in one or all of three different places. Right now, it is between her legs, around her back and draped over her neck. It's not 360 degrees around any body part, but it's enough to cause her to lay on it or squeeze it at certain times. Now, the decelerations are only 10-30% and she only had 10 in 30 minutes, so he says the baby is ok for the moment, but if it gets worse- 50% and 30 in 30 minutes- I need to deliver. He wants me to get weekly, high-resolution ultrasounds to see what the cord is doing. So my fears are substantiated and now I'm beyond terrified. I want to get this baby out now. A.L.I.V.E. 

My OB is totally on board with whatever I want to do, but my perinatologist (who has the high resolution U/S) is not. I had to jump through hoops at 25 weeks to get him to do another U/S to check where the cord was. I begged him to start the non-stress testing at 32 weeks, instead of 34 (which was a compromise- I wanted to start at 30). He believes that the published work on stillbirth is not peer reviewed and has a biased population. He doesn't believe that cord accidents recur and doesn't make an effort to read the available literature (of which there is plenty, which has been peer reviewed by over 30 medical academics, thank you Dr Collins). I'm über-worried because I know he's going to resist when I tell him I need weekly ultrasounds. I feel a tiny bit confident that I will have the home monitor to fall back on for more accurate self-interpretation, but I'm still scared out of my mind. I need the support of these OBs and the hospital, not for them to put up a force field, and I hate that I have to singularly be so damn proactive. Doesn’t everyone want a baby to be born alive if its demise can easily be prevented? I’ll never understand how ignorance can be blissful for the medical community.

To be continued….

Letter to Shiloh #3

Shiloh, my sweet baby, I miss you so terribly much. You are constantly on my mind. Not a day goes by where I don’t envision the smooth lines of your jaw, the texture of your skin, the magnificence of your face. Sometimes I even feel like I am still pregnant with you. I think I feel your rapid heartbeat and your eager kicks. But eventually I wake up to reality- the depth of my sorrow and the ugliness of life. G-d, I feel so mortal.

The past 6 weeks have been unbearable. I’m so tired and I feel that my life has turned into one big cliché… “just breathe”, “one day at a time”, “one foot in front of the other”, “there are no words”…. I know that everyone wants to help us get through your loss, but I don’t know that I want to get through it. I want to hurt, I want to yearn for you. You should be here on earth, with us, but you’re not.

I was the happiest woman on this planet the entire 40 weeks of being pregnant with you. I read so many books, checked weekly on how you were developing, ate well, took prenatal vitamins, exercised- everything a good mom should do. Towards the end of the pregnancy, I even started to worry that I wouldn’t be able to wrap you properly in your sling or receiving blanket, to breastfeed you, or to remember all the words to the nursery rhymes, but I never once worried about losing you. The thought was inconceivable. Little did I know….

There is this misconception that, after the first trimester of pregnancy, losing a child never happens. How untrue. I am so angry with my doctor for telling me that your death was a freak accident, that the chances of it happening a second time are almost nil. Again, entirely untrue. It has been shown that women that have an umbilical cord accident in one pregnancy have a 5-fold chance of having another cord accident in a subsequent pregnancy. Why do doctors think that they know everything? Why do they not keep up with current research when it can save innocent lives? Didn’t they go into obstetrics because they like to welcome lives into this world…?

Since you’ve passed away, I’ve been beyond distraught and hungry to hear about other women’s losses, to feel like we hadn’t been singled out, like we hadn’t done something to deserve this terrible fate. I wanted any and all information I could find on cord accidents, and have searched endlessly for the last 6 weeks. I was instantly directed to the Pregnancy Institute headed by Dr. Collins in Louisiana. Dr. Collins is the only doctor that I know of that has been researching cord accidents- he has done so for that last 25 years. Luckily he gave his contact information on the website, so I emailed him for some answers and asked him how I go about being a part of his study in the future, so I can be sure that your younger brothers and sisters-to-be come safely into this world. He called the next day and talked to me about you for almost 2 hours. He tried to assure me that there was nothing that I could have done differently to save you, short of being constantly monitored by a doctor before the critical time. Nevertheless, this does not make me feel any better. You are still gone, and this, most unfortunately, will never change.

So I’ve gone from being the happiest woman in the world, to being the most miserable and bitter. It is now such a slap in the face when I see a pregnant woman or a woman with a baby. And all of the sudden, there are pregnant women and babies everywhere! Before, I loved seeing families because I was well on my well to having my own, and I loved seeing pregnant women because I knew that they could relate to my joy, that we had an unspoken bond of sorts. But now I’m just broken-hearted and empty-handed, making wishes on fallen eyelashes.