Thursday, January 30, 2014

On the Home Front

Slowly on the mend here. I'm sacrificing precious naptime right now for an update, but feel it's necessary considering all the incredible support I've been given over the last few months with Claire's pregnancy and arrival.

Benjamin is well. My husband is well. Claire has shown no signs of fever or any sickness. However, I would be the one battling a fever. I've been waking up in night sweats and with temps between 99-101. Which is totally fun when I'm already waking every 2-3 hours for feedings. They're tamed by Tylenol and my coughs by the enormous bags of cough drops my husband bought at Costco last week. It appears I have what Benjamin had last week. An annoying, low-grade, lingering sickness.

It's not mastitis. It's not a high enough temperature and my breasts are not in pain.

It's not my c-section healing-- at least I'm assuming it's not since the incision is healing and looking normal and without any gross. It is only sore to the touch and not painful otherwise. I'm 16 days out and it seems to be on the mend well. I can even lay on my sides a bit now, though I try not to because the thought of the incision breaking open sort of makes me want to hurl.

The quarantine must have done its job to keep the sicks away from Claire, knock on wood. I've done no fewer than 2 dozen loads of laundry, cleaned the couch cushions, all pillows, bedding, stuffed animals and things (what. a. pain.) and every single surface I assumed Benjamin might have touched, including each and every one of his toys. Claire is now downstairs and living among us, finally. We still freak out when she sneezes (though none of us had sneezing as a symptom) or when Benjamin randomly coughs or sneezes around her. I don't think the worry ever goes away.

I'm on day 4 of being home with two kids and WOW. It's different. It's busy. It's only really challenging because of my very demanding and tantrum-throwing toddler. He conveniently wants my attention exactly when I sit down to nurse. We went to gym class yesterday and I had to drag him out because he wanted to stay and push the buttons on the door. And the same occurred today at library storytime, but this time because he wanted to stay in the car instead of go inside. Lots of shoes being kicked off. Drama city, these toddlers. So much for not lifting my toddler for a month post c-section. That's downright impossible since he hits and throws and gets calm-down time about a dozen times a day. I don't have the energy (or interest to expose to that many germs) to go to the playhouse in the afternoons yet, so PBS is used as a backup. Sometimes that just has to be okay. Especially when the high temps lately have been in the negatives. Chicago, bite me.

Naps have been tougher. He is currently napping in his bed (!) for the first time since Monday. He has spent the last two days sleeping on the floor in his room for whatever reason.

We took the kiddos out to dinner on Tuesday to a real restaurant and things went okay. Party of 4 for the first time ever. Surreal is an understatement. And of course as they were both wailing on the way to the restaurant, we both laughed and looked at each other saying, "The stuff dreams are made of, huh?"

Yep. We'll take it. Wailing kids and all. They're alive. And considering the lungs and tenacity they both possess, they're well. And we're thankful. Now send me some sunshine and temps above 32 degrees so I can open my windows and I'll feel like I won the lottery.

Caught! Going after "baybee" 

Thursday, January 23, 2014

The Quarantine

It didn't take but a few days for our children to be separated. Claire arrived home Friday afternoon and Benjamin had a bit of a cold. Nothing alarming... just a runny nose.

And then the coughing and fever started. He had 2.5 days with his baby sister before she was locked away behind the sterile doors of our master bedroom.

We're on day 3 of this nonsense and he's very aware "baby" is behind those doors. Everytime he walks by, he wants to see "baby" and tries to get into the locked doors. Claire has literally not been outside of that room in 3 days. Good thing all she needs is sleep and a feeding every few hours.

She can't get sick. She can't. She's barely term (37w2d gestation as of today!) and we are not going back into that hospital for RSV or something serious at this age. We dodged so many bullets to get her here, and we're still battling. But you know what? She's alive.

It's heartbreaking for Benjamin to want so badly to see "sis" and "baby Care" and try to explain to him that he is sick and we cannot get baby sister sick. We tell him that once he's better that we will have lots of time with sister, but he still wants to be near her.

We've got our own little NICU at the house right now. We have designated clothes to change into once we enter our bedroom that were not contaminated by toddler coughs and boogers. Sanitize, wash and enter to touch the baby. When we leave our room, we change back into the grunge to enter the battlefield that is our infested toddler running rampant throughout the house and watching way too much television because we can't go anywhere and contaminate other kids. And even so, we can't leave Claire behind and they have to be separated, so we really can't go anywhere.

Elliot is trying to get back to work, but managing feeding sessions with Claire (around 30 minutes) and figuring out how to occupy Benjamin so he doesn't notice I'm gone behind those locked doors is tough (hello television and iPad, though there's been so much of it that even he is getting bored). I don't want him to misunderstand and assume we are keeping him away from baby sister for any other reason... mama guilt. Tomorrow is Friday. Let's just hope all is well and at least not contagious by the end of the weekend so we can resume our schedule as usual. You know, the schedule where I'm not supposed to lift my toddler (for a month) and somehow still manage to go places and function.

Cursed winter. I've had a December, January & February baby. You'd think I would've planned better and shot for a summer baby. Too late, shop's closed for business. This will pass... but with each minute feeling like an hour, I'm hoping it's sooner than later.

(We have some totally cute photos I'll post once the house is back to normal shape. I am hoping to get a few more before posting their interactions. They are downright precious together.)

Monday, January 20, 2014

Home & Free - The Story of a Little Sister

After just 2.5 days in the NICU, Claire was released into our Mother-Baby room. Our first time having a baby in Mother-Baby. It was pretty magical. Her NICU stay was quite short considering her gestational age of just 4 hours into 36 weeks. She was on oxygen for her first 10 hours of life (gradually being weaned and really just in case) and completely on room air by that evening. She had a feeding tube inserted, but it was never used and also removed on her birthday. Considering the meconium in her fluid, they gave her antibiotics over the course of the two-day stay.

The first attempt at breastfeeding was a success. For being four weeks early, she latched quickly and well. Though small, she is mighty. She still gets tired at the breast and is given expressed breastmilk after each feeding to top her off, which means I am pumping a few times a day. Benjamin was slow to latch and feed and even had a feeding tube (and longer NICU stay) at an entire week older. That whole "lazy white boy" term proved to be more than true. Did you know African American girls are the best at early birth in all developmental areas? Interesting. Girls in general fare better and thankfully, Claire sure did.

I'm still recovering. The physical effects of the emergency C-section are no different than any other C-section. I'm on Motrin and no narcotics. I'd say the hardest part physically is not being able to pick up Benjamin. He has been a trooper about holding my hand down the stairs instead of Mom picking him up, so that's good. My parents have been in town and have been a great help, so that's been easier on the recovery as well. Things will get a lot harder once my parents are gone and we're going through day-to-day trying to keep things normalized for Benjamin.

The emotional recovery. Well, if you know our story well enough as most of you do, pregnancy and growing our family has not been an easy task. Each pregnancy I've had ended in tragedy, almost tragedy, and/or heavy complications. I'm still not sure how I was dealt such cards, but it's hard to complain when we are holding the life of a precious daughter in our arms today. I struggle with the thought of why we were put through the wringer and why we were spared this time. And why not with Andrew? Why not all of my friends who have lost babies and multiple babies? How did my doctor have such incredible intuition? Did that Cholestasis that kickstarted the last 4 weeks of crazy mayhem and doctor intervention cause my daughter's almost demise, or was it the savior that landed me in the hospital that night for extra monitoring which ultimately saved her life? I do believe a blog post about Cholestasis is in order to get it out on the web. It's so important that moms fight for testing if symptoms are present.

My OB who had been carrying my case throughout Benjamin and Claire's pregnancies exclusively came to visit me 5 hours after Claire was born. It was just past 9:00 a.m. on January 14th and she was supposed to be my delivering OB (as she was with Benjamin... yet she's never delivered any of my babies!). She rushed into my room and took me into her arms. She told us that when she called in this morning to check on my status and they told her I was "crashed" and had an emergency C-section in the middle of the night, she nearly dropped the phone. She couldn't believe it and was so relieved. She said that countless doctors including the NICU doctor who was present with his team at Claire's birth all asked her why she chose to admit me that night rather than wait until morning. When I was admitted that night, they were all questioning it and thought it was weird and odd. I wasn't being induced that evening and it really made no logical sense, especially since I had perfect NSTs that weekend. She didn't know. It was just her intuition and wanting me to get some rest because I had been through enough with the itching and scariness. My OB told me right there that she couldn't believe the record of decelerations she saw on my chart from that night and if I was not there that night, Claire would not have made it. Just typing that makes me cry big, huge tears. We're so lucky, and yet, so unlucky.

Without having lost Andrew, neither Benjamin nor Claire would be here. Benjamin based on timeline and possibly complications that could've lead to his birth ending horribly (Polyhydramios, cord issues, poor NSTs) and Claire because the Cholestasis would've been written off and not been admitted that evening. But because we lost him, the doctors were taking our case very seriously-- after I demanded those blood tests. It is so, so important to advocate for yourself and your baby. I don't like to think about Andrew "saving" them, because I'm not willing to allow the thought of me having to sacrifice my firstborn to have some kind of normalcy and family, especially when others don't have to go through any odds to achieve "the dream" like many of us loss families. But the connection to losing Andrew is something that has changed the outcome of our family dramatically.

Here are some photos of Claire's birthday, along with more storyline.

Left: taken at home as I was getting ready for my last night with my boys before being admitted for my induction the next morning. We went to Barnes & Noble (toddlers love escalators & train sets), Subway so I could eat... even though I had two dinners that night..., and for frozen yogurt before the boys dropped me off at the hospital. They went to Chipotle for dinner and I settled into my fancy hospital gown (right pic) in room 108 where I was "going to deliver" the next morning, said the nurse who admitted me. I walked by Andrew's room (120) on the way to this room. I settled in with the monitors tracking Claire and my contractions, watched The Bachelor, wrote a blog post, ate stir fry for dinner #2 and took an Ambien before drifting off to sleep...
As Elliot wrote in the last blog post about Claire's unexpected delivery, he did not receive my phonecall as I was being wheeled into the OR by a team of nurses, the delivering OB, the anesthesiologist, NICU doctor and their team... and whoever else was in that room. There were a lot of people. I left him a message with something very casual like, "Going in for an emergency C-section. Bye." He may never live down not receiving my phonecall. Note to other husbands out there whose wives are alone in a hospital overnight-- don't keep your phone on silent.

My friend Kristi was my on-call person who would show up in the event of an emergency to relieve Elliot and stay with Benjamin who was sound asleep, but I called her the night before telling her with 100% certainty that we would not be needing her and that she didn't have to wait by the phone. After all, I was being monitored, so nothing could happen, right?

I remember being wheeled in, being asked to move over to the delivery room bed, telling the nurse what my passcode on my phone was along with my husband's name (so she could call him after my unsuccessful attempt--and I totally used Siri to call Elliot but failed, haha), telling the anesthesiologist to please knock me out before they start cutting, a gush of liquid across my belly, an oxygen mask on my face, and the anesthesiologist grabbing my jaw tightly with his big football player hands to get me knocked out immediately. I also remember someone saying something about arms and being strapped down. The rest is lost.

Elliot finally answered and the nurses asked him if he had been receiving their calls--apparently called a few times. Nothing like knowing my husband was sleeping soundly while I was going through a major emergency abdominal surgery and that our daughter's life was on the line. He couldn't believe it and neither could I... though even if he were there, he would not have been allowed in the room and it might have been more traumatic for everyone. He remembers asking if we were okay and they said we were both alive. When he arrived, the nurses were discussing "Where they wanted Mr. Wilson", which scared him a bit.

Claire was born at 4:17 a.m. and these photos of me in the recovery room (which I don't remember at all except Elliot and the anesthesiologist talking about Elliot's hat from Antique Archaeology) are all we have of that time. Apparently I'm quite funny under general anesthesia and morphine, because Elliot remembers me cracking jokes (!) with the anesthesiologist. These photos were taken at 7:19 a.m., thanks to the photo properties for keeping track. It had been 3 hours since she was born and we had yet to see her. Elliot was asked by the nurses if he wanted to see Claire or me first-- he chose me (wise, husband). He actually arrived in the recovery room before I did, though I truly have no known knowledge of any of this, or seeing Elliot at all. My first memory when I woke up that is visual was being wheeled down into the NICU to see Claire for the first time with Elliot. The NICU was huge, the rooms were all private, and less than a year old. It was an entirely different NICU than Benjamin experienced.
Apparently I asked for tissues. I was crying I guess.
My first memory of seeing Claire was noticing that she was small (no surprise as she was my smallest and youngest baby by gestation) and was sucking on a pacifier. I was amazed she had the sucking ability for being so young. It's wild to think that many people saw Claire in her first 3 hours of life and we had yet to see her at all. Many doctors and nurses were caring for her, cleaning her and dressing her... and yet we had not been around. That's still something we have been chatting about because of how abnormal it was. She was alive in this world hours before we met her. And while of course we wished the circumstances were different, we wouldn't trade the diligence and intuition of those nurses and doctors that night. I also oddly remember my nurse from my room 108 "delivery room" being pregnant. Odd what pieces I've managed to collect.
In recovery mode. Morphine (which apparently I was pressing often until I realized what it was) made me SO drowsy and unable to keep my eyes open. Yet, I couldn't sleep at all. Between our Mother-Baby room and seeing Claire in her private NICU room. I remember trying to get up to get in the wheelchair to see her for the second time and getting dizzy. I didn't get to see her again (since that 8-ish a.m. first meeting being wheeled in from my OR bed) until that evening when I could stand up on my own and make it to the wheelchair for my ride down to the NICU. We were put on the second floor of Mother-Baby to be close to Claire... as the NICU is also on the second floor. That proved to be quite nice as we visited her often, just like Benjamin, to feed, breastfeed, and hold. The leg cuffs were to prevent clotting and lower swelling. They were horrible, itchy, sweaty, and didn't prevent swelling as I still can't wear normal shoes at 6 days postpartum-- though the swelling is reducing, thankfully.
In the meantime, Benjamin was being cared with the best hands possible. Our friend Danielle took him to Dunkin Donuts for breakfast (note donut hands grabbing for more), the children's museum, playhouse, and he ate super well for her!
On Wednesday (after my parents arrived Tuesday night and took over for Danielle), they came to visit and meet Claire. Benjamin did not meet her that evening because NICU has strict orders against anyone under 16. Elliot took Benjamin down to the Ronald McDonald House to check out their fun kid toys and things. The hospital social worker (who also runs the SHARE program for pregnancy loss... I'm telling all comes full circle for us...) told us we were welcome there to stay or visit and remembered us from last time. If you don't remember that fiasco and story, here's Benjamin's birth story about the Ronald McDonald House not being open despite the signs saying they were and us sleeping in the lobby because we refused to leave. The social worker picked out a special toy for Benjamin and everything.
Finally in Mother-Baby with our baby girl. We were released by my rockstar OB around 1:30 p.m. on Friday the 17th and headed home. I was wheelchaired to the car as I was after the births of my boys and walked the two feet from chair to car in my socks because I didn't have shoes that fit my swollen feet. I didn't care. Get. us. home.
She's doing incredible. At birth she was 6lb. 1oz. and dropped to 5lb. 13oz. at discharge. She is now up to 5lb. 14oz. with just 3 ounces to go until she's met birth weight. She's sleeping, eating, being all around amazing and has turned Benjamin's world upside down. That's for another post.

Tuesday, January 14, 2014

An Unexpected Delivery

(Disclosure: Husband as ghost writer, so please excuse the lack of style and creativity.)

Last night, after deciding to take an Ambien at the suggestion of her nurse, Brandy was fast asleep on monitors when she was suddenly awoken at 3:40 am by five nurses. Apparently Claire had shown heart tone decelerations over the past 6 minutes, and the nurses immediately started inserting IVs, checking the baby, and had Brandy get on her hands and knees to try to get the baby away from the cord. Claire stabilized at this point, and they did an ultrasound. The doctor then came in, checked her monitor readings, and said if this deceleration occurred again that they would do an emergency c-section. The doctor laid Brandy back down, and started another ultrasound... at which point Claire had another deceleration.

They immediately started prepping Brandy for the c-section. Brandy called me at 4:08 am (which unfortunately did not wake me), put under general anesthesia, and Claire was delivered at 4:17 am apparently kicking and screaming. There was meconium in the amniotic fluid, which further validated that she had indeed been under distress. A nurse was nice enough to keep calling me and get through a few minutes after the c-section had occurred. (An amazing friend was nice enough to rush over to our house to take over babysitting Benjamin, and I was able to get to the hospital before Brandy was awake. We also have another friend watching Benjamin ALL day today before his grandparents arrive... so a HUGE thank you there as well.)

Claire weighed in at 6lbs 1oz (not bad for a baby just a few hours into her 36th week), is 18.5 inches long, has blonde hair, and a dimple on her chin (and we are trying to figure out what side of the family that came from). She is now stable in the NICU (on oxygen, not unexpected, and antibiotics as a precaution given meconium in the fluid) and appears to be doing well. (Note: The NICU has undergone a major upgrade since Benjamin was here, and now babies get their own really nice private rooms.)

Brandy is extremely tired, but ultimately relieved... and looking to catch up on a bit of sleep if possible. Between all the drugs and lack of sleep, she was not in a condition to write this blog post... but wanted to get this update out to her many amazing friends and family members who she knows are anxious for an update.

Here are a few photos of our beautiful addition, and her amazing mother:

On behalf of myself, Brandy, Benjamin, and Claire... thank you all for your countless thoughts, prayers, support, and love.

Monday, January 13, 2014

Updates From Labor & Delivery

Well, I'm back. Again. For the last time. I'm hooked up to monitors for Claire's heartbeat and contractions. No Cervidil. No IV. No Pitocin. Just monitors. I'm basically here for an overnight NST. At 6 a.m. tomorrow morning, I'll be given Pitcoin (which I had with Benjamin). Elliot will come about two hours later and be with me for the duration. They've already offered me an Ambien so I'll sleep before it all begins. It's weird being here alone, but I know it's really uneventful and quite uncomfortable for Elliot to be here. And honestly, I want Benjamin to have normalcy tonight with Dad at home before his world is given a spin.

Both of the weekend NSTs went great. She moved like a champ (go figure!) and I got 4 hours of monitoring to calm my nerves a bit. I still performed plenty of kick counts at home, but those NSTs were worth whatever they end up charging us.

I've been scurrying to get things ready for Benjamin, my parents, and my friend Danielle who will take over tomorrow until my parents arrive late Tuesday. The teacher in me got right to work on my "sub" notes, complete with addresses and phone numbers of places we often go with Benjamin. The fridge is stocked, the pantry was already stocked, and I cooked/baked things that my son might actually eat 4 bites of before giving up. I'm so thankful we have such good friends willing to fill in while we're not able and that my parents could make the trip out to spend a week with Benjamin.

We're hoping our family is not separated for over a week, but we have to be realistic about things. I'm being induced at exactly 36 weeks. That's considered pre-term. Which means Claire will be born a preemie. Not a super small one (hoping for 6lbs! Though, B was 7lb.6oz. and still earned himself 4 days in the NICU at just barely term), but premature nonetheless. Which means... we're sort of setting ourselves up for a NICU stay. It would be amazing if she did not need NICU time, but we just want her alive.

My mind and heart have been all over the place. Nervous. Anxious. Frustrated. Excited.

I'm nervous about being away from Benjamin. I already miss him and it hasn't even been 3 hours since I got hugs and kisses from him last. I'm nervous about choosing to induce our daughter this early. But, I'm more nervous about leaving her in with the uncertainty of Cholestasis that can strike at any time without much medical understanding. I'm nervous about another NICU stay. I'm nervous she will show distress. I'm nervous about the delivery and if that will go well and safely. I'm nervous about seeing her struggle. There are just so many uncertainties.

I'm anxious. We have gone back and forth about whether this is the right decision to induce. This condition is rare. And risky. Most people have happy and healthy inductions with this condition. But most is not good enough for us. The itching, even with 1200mg of the Ursodiol drug in me each day tells me that my levels are fluctuating and uncertain. That while she's in there each minute, she's growing and maturing as she should, but could also being exposed to something we're uncertain about with consequences I'm not willing to gamble.

I'm frustrated we are going through another strange induction. It's frustrating knowing that we didn't get to make it to 38 weeks and have a normal, happy induction with our daughter in mother-baby and going home 2 days later. Yes, it could happen, but I doubt it. I'm frustrated that I've been pregnant 4 times and none of them ended in the simple, happy, fairytale ending we imagined. Even if she doesn't have a NICU stay, this end is not something I desired for her.

I'm excited about having a living daughter. I'm excited Benjamin will likely have a little sister and grow up with someone else to interact with. I'm excited for our family to welcome another grandchild and niece. I'm excited I won't ever be pregnant again and this condition will go away!

Here we are again... updates to come tomorrow! Thanks for all the emails and comments of support. We appreciate them all.

Friday, January 10, 2014

The Saga Continues...

I was almost admitted tonight. My OB and the fab MFM were chatting FOUR times on the phone about me during my NST visit.

My appt. was at 2:30 and I just got home at 5:20 (but am just publishing this now because I have a demanding toddler whom I'm so freaking thankful for). I saw both the OB and drove to the hospital (next door), valeted my car and saw the MFM. I had three ultrasounds. Not exactly a simple NST.

First, there is some good news. Let's start with: SHE IS ALIVE. Also, my bile acid levels have lowered considerably (but are still considered high) to 55. From 132 to 55? I think the drug and my diet are both magic. I shall continue all of those until delivery. My liver panel was elevated but not with alarming numbers. My bilirubin came back in the red, but also mild.

Now here's the play-by-play:

On the way to the OB, she was moving decent. I was happy, but knew once they hooked up that stupid machine, it would lull her to sleep. And it did. She seriously moved like once in 30 minutes. I had juice and a lollipop and hoped that would make things happen. She ended up having 3-4 great accelerations in 10 minutes following. Not the best, but she's never been the best.

My OB did the Strep B and told me she wants me admitted Monday night and to deliver me Tuesday now at exactly 36w. Then she checked me to see if I was dilated and could not feel the baby at all. Her positioning was odd and she told me to get dressed and meet her in for an ultrasound.

Ultrasound time (#1) and she is still head-down, but not engaged. Fluid looked great and she was concerned about the cord blood flow because of how she was positioned in relation to the cord. Said she wanted to have the MFM ultrasound me and told me to sit tight.

Various calls with the MFM later (to which I heard much of these conversations) and my amazing OB told me that the MFM told her to just find a reason to admit me tonight and deliver because we just seem to be hitting so many issues. But, they couldn't find a clear reason unless there is a cord issue. Fluid is good, she is reactive, my numbers dropped considerably... so it's not good enough reason to induce earlier than 36w.

Before I left for the MFM, my phone kept updating me with scheduled appointments to Labor & Delivery for NSTs. I will be having an NST tomorrow (Saturday) at noon and Sunday at noon. On Monday night, I will be admitted at 6 p.m. to get some rest before my Tuesday induction. I was grateful to hear all of this, but a little nervous about not being admitted for round-the-clock monitoring until she is born. However, with the news that the numbers have improved, I was thankful for at least that.

I headed over to the MFM at this point and had an ultrasound with the technician and then another one when the MFM came in. She showed me cord blood flow and positioning of the cord no where near her head or neck-- near the placenta actually. Yes, there was a lot there, but the blood flow was good.

I'll be monitored every 24-30 hours until she is safely delivered. However she comes, let's just hope she's alive. Like so many of you wise and wonderful people have said, NICU is just a stepping stone. We'll get through this.

While I slept maybe 3 hours last night and will likely not sleep until Monday night when I'm admitted, I'm feeling more confident about the frequent monitoring. Of course I'll be doing kick counts in between these L&D visits, but at least we had some good news.

Thursday, January 9, 2014

You Can Handle Anything That Comes With Alive

That's what my friend and fellow babyloss mom, Melissa, has been emailing me over the last couple weeks.

This diagnosis is really throwing me some curveballs. Excuse me for posting exclusively about this scary pregnancy for the duration of it... because it is consuming every crevice of my mind.

My OB personally called me yesterday to tell me the liver function test was not good and my levels there were high, too. She was not surprised and I wasn't either. High bile acids indicate your liver is not working like it should. The bile acids test has not returned yet, but we can only assume it's not looking pretty. I will find out tomorrow at my NST appt.

Now that both overseeing MFMs are on board and clearly see the urgency in my case now, they specifically told my OB that we need to make it to 36 weeks (Tuesday) and then it's go-time.

I'm having this baby next week... if she makes it that long. The clause I never want to add, but reluctantly must. It's all that is going on in my brain right now. She had hiccups three times this morning. Does that mean she is in distress? Is there meconium in the fluid? These thoughts never rest.

My OB said we have a decision to make-- will it be next Wednesday at 36w1d, or next Friday at 36w3d? She also said I could come in for daily NSTs if that is what gets me through. I just might.

Will we have a living child? Hopefully.
Will we have a living child with potential NICU time for either choice? Probably.
Will the 36w3d choice be wiser to avoid NICU time? Likely.
Can we wait that long, knowing we are putting her in danger even longer inside my body? Unlikely.

We both agree that we'd LOVE to wait until 36w3d, but really, we'd love to wait until 40 weeks! That's just not happening. The difference of those two days seems harrowing. Knowing the anxiety that I am currently experiencing, we might just be scraping it to Wednesday. And honestly, if these bile acids come back astronomically higher than my 132 (already over 3x the severe mark), Wednesday isn't going to be a consideration, but a decision made.

On Tuesday at my 35w appointment, I went from an induction date of 37w6d (without Cholestasis) to possibly 37w3d (diagnosed with symptoms) to 36 weeks. These decisions all happened in 24-hours.

We can handle anything that comes with alive. Of course I don't want my daughter to deal with NICU time. But I feel like my body is slowly trying to kill her and I just can't take that chance. If we're lucky enough to see her born alive, we'll handle anything that comes with being alive.

Probably more updates tomorrow after my NST.

Tuesday, January 7, 2014

35 Week Update

Today marks 35 weeks with Claire. I had my OB appt. this morning and things have definitely changed. I'm starting to be taken a lot more seriously.

After Friday's appointment that put me in low spirits and tears (marginal NST, measuring small, bile acid levels high and no one who cared...), I called Saturday to request the nurse put in a requisition for another repeat bile acids test and to add a liver function test to that. The nurse was not the lead nurse and could not authorize it, but she did write me a requisition that day and told me to wait until the lead nurse okays it before I have it done on Monday morning. I was in tears talking to her about this and she told me to go with my gut and that I'm the only one who would know absolute best. Essentially, she was giving me permission to break the rules and get the blood test without the blessing of the lead nurse and overseeing MFM.

Monday (yesterday) marked 10 days since I had my first blood draw and levels at 132. I scheduled an appt. for 7:30, knowing the lead nurse wouldn't be able to get back to me in time before the test to authorize it. I was breaking the rules, I guess. My body, my baby. And who cares if I'm paying and it doesn't increase their workload at all, right? Two hours after I got the test done yesterday, I received a call from the lead nurse telling me she spoke with the MFM (who is clearly not someone I like) and he concluded that 10 days won't make a different in my levels and not to bother with the blood test. I told her I already had the blood draw and if the levels didn't matter, then we'll find out.

While I have no training as a nurse, doctor, or even phlebotomist (though I'm pretty sure I could be one having had so much blood taken in these three years of babymaking), I know that blood levels rise and fall rapidly. I remember getting beta levels tested for my last three pregnancies and getting blood draws in the hospital daily to see increase and decrease in other levels. I had blood tests every other day after my miscarriage to make sure my levels were decreasing. I know levels can rise and fall quickly, so to tell me 10 days doesn't matter... false.

I've been plugging along with my diet, taking the meds they prescribed and had a list of questions to ask at my OB appt. today. I've been anxiously awaiting this appt.

My ultrasound was first and she measured the fluid at 13cm, which is absolutely incredible for me. I had Polyhydramnios with both Benjamin and Andrew, so checking fluid for this baby has been really important. At this stage with Benjamin, I was well on my way to 28cm. That's a huge difference.

She also did a growth ultrasound since my NST and OB visit on Friday caused that OB (who I never see) to question why I was measuring behind. Turns out I'm not since Claire is measuring 5lb.15oz. and in the 62nd percentile. All measurements were in the 35th/36th week range. I know those measurements are usually padded and often babies are born smaller, but to be near the 6lb. estimated range is great. A sigh of relief on that one. No growth restriction like that OB had me worried about on Friday.

The same nurse who gave me the unauthorized requisition to get a blood test helped me today. And you know what? Before this week, I'd never seen her before. She set me up with my NST and we were in business. Despite the NST taking about 45 minutes until my OB was pleased with the number of accels, she did do fine. My babies are never rockstars on these, it seems. But, she did move and it was tracked and her heart rate did elevate accordingly.

We chatted about the itching and how I'm still up hours at night showering and trying to find relief any way I can. My OB told me she was surprised to see such high numbers in me but not jaundice. That she normally does not worry much about Cholestasis as it is more common than people realize, she wasn't taking any chances with me especially, knowing we lost Andrew. Music to my ears. I talked about my diet and she said that people with gallbladder issues are often encouraged to reduce fat intake, so it can't hurt.

Then I asked if she would consider moving my induction date up so I didn't have to endure a weekend and it would put me closer to 37w rather than the 38w mark. She said she was on board and would be in talks with the MFM (different!) and they might want me to come in for an amniocenteses on that Friday before they make the call to induce early... but if it were her, she'd just push for a Friday (1/24) induction. Still hooked to the NST at this point, she came back and said the MFM is concerned enough about my levels that they want me re-booked for more bloodwork, but this time both bile acids and liver function test. Hmm... my intuition is stellar.

I told her I already pushed for those and that I got the test yesterday (against the lousy MFM's orders). She wasn't pleased that the lab might take 7 days again at that particular lab, so she sent me over to the hospital next door for a rush of bloodwork with hopes to have the results by this Thursday or Friday, latest. We would discuss at my Friday NST. She even mentioned that if my levels are elevated more, they might be talking an induction in the 36th week instead.

Holy. Of course I don't want a 36-weeker, but if my levels are high, the baby is not safe inside me according to my fabulous OB and the new MFM who are taking this seriously. {Note: my fab OB did not know my high bile acid levels when she was nonchalant about my itching last week. Now that she knows, there's been a fire lit, it seems.} Yes, many outcomes around 37 weeks are positive with women who have Cholestasis. But my levels are high and I've been dealt the card once before. It appears now no one important is willing to take any chances.

They handed me a requisition sheet, booked my NST for Friday and said we'd discuss after my levels come in about my induction date. I was at the office for 2 hours. Oye.

As I was walking out, that unauthorized nurse who gave me that requisition sheet came in my room. I told her they were pushing for the exact same bloodwork I requested from her that the lead nurse and terrible MFM saw as irrelevant. I told her I guess my intuition was correct. She then told me again that I knew better than anyone and going with my gut was the smartest move. Smiles exchanged.

I went over to the hospital and repeated the bloodwork just an hour later. It wasn't 100% fasting like I'd done at the previous one (and yesterday's) and I had lots of sugar in my body from the NST, but hopefully we'll see some trends or a decrease. And bonus! While I was there, I was able to pick up Andrew's ornament from the SHARE tree we hung at the remembrance ceremony on December 10. Nothing says you're in this hospital way too much like killing two birds with one stone on a visit. It's not like the grocery store, and yet... feels so familiar. Cannot wait for that hospital to be a foreign place to me again. How's next month for a beginning?

All that to say... there's no definitive news, but bloodwork is in the works and an earlier induction is highly likely.

Saturday, January 4, 2014

Risky Business

We're down to the home stretch at just over 3 weeks before Claire's scheduled arrival. And yet, I'm terrified. Not in the normal babyloss mom kind of way, but something additional.

All was going pretty smug and well (honestly) until the end of my 32nd week.

The amazing husband gave me a hand and foot rub and all I had to complain about was a demanding toddler, lower back and hip pain. Typical pregnant girl problems. The day after that hand/foot rub, I complained they both itched a lot. Chalked it up to cheap lotion or whatever.

Fast forward a few days at my 33w appointment. I mentioned the extreme palm and foot itching to my OB. She also said itching was normal in pregnancy. Listen, I know. It's not my first rodeo. My belly itched like crazy with Andrew and now it doesn't because it's been down that road a few times. But this hand and foot itching? It seemed... abnormal. My urine was also getting progressively darker, despite the insane amounts of water I have been drinking to hopefully cleanse this away. It wasn't dehydration. I can't possibly be drinking more water. And I was spending 3-4 hours up in the middle of the night itching my skin to scabs. The only temporary relief was showering and I have been taking about 3-4 each day... mostly in the middle of the night when the itching was at its worst.

Two days later, I called back to ask if I could be tested for Cholestasis. It's a condition in which your liver does not process bile acids properly and could possibly leach these acids into your bloodstream which are toxic at high levels for the baby. It's a simple blood test that takes forever to get back. Seven days. That's a full-on eternity when you're in late pregnancy. It's also rare. When I went in for the blood test, neither of the ladies administering had ever done one or seen that test. Oh, to be in the 1% again. It's getting old.

At my non-stress test yesterday (going 2x/weekly), Claire was sleeping and performed crappy (to my standards since I've been through plenty of these) but the OB wasn't worried because there were a few good accels. Then she measured my belly and told me I was measuring 2.5 weeks behind. What? I just saw my regular OB on Tuesday and she mentioned no such thing with the same measuring device. I suppose I can chalk that up to being subjective, but it wasn't the best news to hear after the NST was just marginal. Add a growth ultrasound to my fluid check ultrasound on Tuesday.

Then she told me my levels were in. My bile acids as of 12/27 were 132. That was eight days ago and since I suspected the itching was not just a no big deal sort of thing, I took matters into my own hands and changed my diet. I'm eating very low fat and just started a hot water and lemon juice cleanse each morning. I've upped my vegetable and Vitamin K intake and I'm living on hope. When I tested, I had just eaten pizza the night before and was not on any sort of diet before then. Perhaps, perhaps, that could have contributed to such high numbers. The idea is that if I lower my fat, there will be fewer bile acids my liver has to process and fewer to enter the bloodstream. We'll see if my logic is helpful.

If you do any kind of research (in medical journals or even Google...), you'll note that bile acid levels of 132 are high. Anything above 40 is high and risky. As in, risk of meconium in fluid, stained placenta and stillbirth. Yep, stillbirth. Lucky ol' me gets to deal with that fear again in another form. Yet, my OB, another practice OB and the coordinating MFM I saw all through Benjamin's pregnancy don't seem to be worried. In fact, they've told me that they've seen elevated levels many times before and none of those cases have ever lead to a demise. Ah, see that's where I lose my mind. Because you've never seen one, it doesn't mean I can't be your first case. And to have already lost a baby and have everyone scratching their heads after as to why? Not exactly the game I want to play.

The one silver lining is that I was prescribed Ursodiol, which is meant to help break up those bile acids and hopefully lower that number to a more manageable and less risky territory. But there are no guarantees. I took my first dose about an hour ago and will take them 3x/daily until I deliver. Of course the risk of stillbirth increases exponentially after 37 weeks. And those bile acids can spike at any time with no way of knowing because the blood test takes a week to come back!

In the meantime, I will be hopefully going in for another blood test to see if the diet (and few doses of Ursodiol) are working. It will take another week for those results and put me just under 36 weeks. I just might lose my mind in that week. If you call, I probably won't answer (like I haven't been anyway).

This baby would live if delivered today. It terrifies me to play Russian Roulette again, despite knowing she needs more time for maturity, growth, and lung development. This is the last time I can do this. It's simply too hard.

Feel free to comment with success stories. You know, if you know someone as unlucky as me who has had just about all the issues under the sun in pregnancy.