INCREDIBLY Thankful.

Not only am I pregnant, but I'm SO close to viability!!!  Not that we're expecting him ANYtime soon (he WILL be born at 38 weeks if I can do anything about it).  I'm SO SO SO SO thankful for the mobility that I have with the TAC.  I feel so NORMAL.  I think every day how scared I was to conceive again, knowing that with a vaginal cerclage that gravity would be my enemy.  Being in bed for 22 hours a day sounded fun at first, but I can't imagine being on strict bed rest the entire pregnancy.  I feel for my friends who are currently in that situation.  I know that it's temporary, but it takes a TON of energy to not go insane in the membrane. 

I put up Christmas lights yesterday, DEEP cleaned my kitchen, carried stuff, rearranged furniture, vaccuumed, took a walk, went shopping and to Taco Bell.  To most people, those don't sound like glamorous things, but when I think of the alternative, I am SO thankful that I was able to physically handle those tasks.

On a daily basis, I'm so glad I went this route with the TAC.  It was scarier at first (major abdominal surgery in the first trimester!?  insane!) but now I have this confidence that my body CAN do the right thing!

If I could outlaw the vaginal cerclage, I would.  I wish insurance companies would cover, and I wish surgeons would learn and recommend it.  I think the efforts are in place to have the medical field re-think the surgery, but it can't happen too soon to save these precious lives.

No change in cervix!!!!!!

STILL measuring 4.2 cm!!!!!!!!!!  The TAC is gorgeous and I can see it supporting my boy.  Everything is going textbook perfect so far.  I feel so blessed.

Want to see my cervix? Of course you do!!!

Okay, the first picture is of the TAC.  The arrows are pointing to it, and it shows as a glowing band.  The weird pear looking thing to the right of the arrows is my cervix.  It's long and closed!  The weird lumpy thing to the left surrounded by fluid is the baby's head.  Sooo... since the baby is so close to my cervix, I can ONLY imagine what things would look like without the TAC holding everything in place.



















This second photo is of my cervical length.  At this exact point with the twins, my cervix was 2.5 cm.  It measured at 4.22 cm today, which is a normal length!!!!!!!!!  The white dotted line is the length of the cervix.

1 month since TAC surgery!

How am I feeling?  I am still moving slowly but not nearly as incapacitated.  It's more like, I can't just jump right up out of bed, but I don't do that when I'm pregnant anyway.  I haven't gotten into daily walking yet, but that's out of sheer laziness.  My incision doesn't hurt at ALL but just feels a little sensitive.  I find myself protecting the area when the dogs are around in case they accidentally step or put pressure on me.  Sadie likes to lay beside me on the bed but she roots her head around on my stomach.  Not that it would hurt, but it's creepy.

Other than moving slowly, I'm feeling pretty good!

Overwhelmed (in a good way)!

Maybe it's because October is Pregnancy and Infant Loss Awareness month, and October 15 is the day where we can all come out and support one another in our loss and our hope, or maybe I'm just feeling extra fuzzy right now.

I've come to realize, thanks to the amazingness of the internet, that there are so many amazing, strong, fabulous women out there who have gotten the TAC in order to give themselves the absolute BEST chance in keeping their babies in for the long haul.  Lara, Marie, Alyson, Sara to name four - all fighters who made the sacrifice of pain, blood, sweat and tears to ensure future hope.

I'm overwhelmed by what the TAC can do.  I'm awestruck by what it HAS done.  I want to shout it from the rooftops, and I want every woman who even has an inkling of cervical issues to have it done.  I have to walk a fine line between being obnoxious about it and being too mum.  I want to share with women, but unfortunately, the only way they know about their cervical issues is when it's too late.  Everyone reacts differently to the hurt that follows.  I wanted education, I wanted to read stories like my own, I wanted an answer, and I wanted HOPE that it wouldn't happen again.

So, if you're out there reading this after a loss from cervical insufficiency, I hope you've learned about a surgery that DOES give hope.

(((((((((HUGS))))))))))))))

And...let the itching begin!

The tape strips were "supposed" to "fall off" at 2 weeks.  Phhhh...  I've been peeling them back little by little because my OB said if they weren't off by my appt this Tuesday, she will "help" them off.  No way, lady! 

As I tear each one off, there is a zinging for about an hour, and now intense itch has begun.  I believe there's a total of 10 strips and I have 4 completely off, the rest are folded in half, ready to be ripped.  It doesn't hurt, per se, but it's very tender and itchy. 

Think duct tape.  They are serious business!

Recovery + TAC Tips

Sorry it's been so long.  Neither sheer agony nor any kind of complication or drama has prevented me from updating, which is good news!  I've been quite well, just resting and being relaxed.  My mom came home with me after the surgery (thank you, Mom!) which was a huge Godsend.  She was able to get me out of the house every day (NO driving for 2 weeks for me, even though I broke that rule today).  Nothing major, but I at least got out to civilization at least once a day, and to my OB for a follow-up.  She also kept dishes washed and she vaccuumed and let the dogs in and out. She also cleaned up my barf when I threw up all over the kitchen floor while it was still wet from her mopping it.  I love my mom.

So, recovery from surgery has been pretty much what I expected.  Thursday was surgery, Friday I rode in a car for 4 hours (with 1 break to walk and eat), Saturday rested, then Sunday flew back home.  I was adamant about getting through the airport without a wheelchair and I did great.  No wheelchair or assistance!!  The pain is just plain weird.  It feels like my abs are in a constant state of doing a sit-up, very sore.  When I touch my stomach near the incision, it's completely numb.  It feels like there's an invisible pillow tucked in there. I talked to the nurse at my OB and she said she had a c-section and a tummy tuck and 7 years later, she still has no feeling in that area!  I don't know why, but I'm wondering if feeling will ever come back for me there.  It's totally fine for now, but it definitely does feel weird.  Other than the numbness and soreness, I have some random sharp twinges that take my breath away, but no constant stabbing pain or anything.  I basically walk around hunched over like I'm 99 years old. It's very attractive.  It also makes me realize how weak my back is!  I have also had some bladder issues, I'm waiting for my urine dip to come back to see if I developed a bladder infection from the catheter.  Dr. H gave me an IV of antibiotic to prevent this, but I alllllways seem to get bladder issues.  It's probably just me.  Lots of cranberry juice has helped tremendously already. 

EDITED to add:  I have since recieved the results and there is NO infection.  Turns out I was having bladder spasms, and was told to lay off the acidic drinks such as cranberry and tea.  It's helped a ton since I stopped drinking those!
It's now been 9 days since surgery.  I'm starting to feel like my organs are back in the right places.  About 4 days ago, I took my last Percocet (I still have about 40 pills in the bottle) and have gone down to just Tylenol.  2 Percocet at a time is for when you want to sleep, 1 was maintaining the pain during the day those first few days.  If I took 1 right now, it would probably have the effect of 2 since my pain is so much less.  Today, I cheated and DROVE to Target (about 15 mins one way) and did just fine.  I should have eaten something first, because I started to feel a little hot and lightheaded, but the drive went just fine.  I treated myself on the way out to some Chik-Fil-A sweet tea and those little nuggets on bun things.  I forget what they're called, but YUM!

I'm rambling.  Since my thoughts are so scattered, I'll bullet point some tips that have helped me:

• Absolutely, 100% REQUIRED is a travel pillow of some sort.  I fortunately found one just in time at Target the night before.  Mine was $2.50 at the dollar bin and has the styrofoam beads inside.  That type in particular is great, because I can press it against my stomach and massage the beads, which in turn massages my stomach and feels SOOO good.  You will need it when you stand up, when you cough, sneeze, laugh.  It takes a lot of pressure off.  I am still using it 9 days later.  I also use it when I sleep at night to give a little support under my side-belly.  If you have a nice flat tummy you probably won't have to do that, but I have some extra that pulls my incision when I lay on my side. It's also amazing in the car.
• You will have a funky discharge after the surgery.  Mine looked like Cheetos rubbed inside my pad.  It was gross!  I finally realized it was probably iodine because Dr. H said he basically used loads of it.  I had some clotty mucousy stuff, too, which was a rather disturbing find.  By the time I left the hospital, I just used some liners (bring some) and was able to forego those a couple of days later.
• Pregnant or not, you will most likely have an ultrasound the next day before you are discharged, so be emotionally prepared for that room if you haven't seen one for awhile.  The tech will give you a picture of the beautiful band holding your cervix iron tight!!!
• If you're traveling to Dr. Haney, make sure to bring AT LEAST $40 in cash for parking - it was expensive, and cash only, but there were Chase ATM's inside the hospital.  Try to get there at least an hour early, it was hard to find where to go, and parking was hard to find - it is a VERY busy campus!
• If you're seeing Dr. Haney, be prepared to do a lot of waiting.  Don't take the times they give you very literally.  Just use that time to relax and mentally prepare and talk with your husband alot.  He will be short on conversation the next few hours!  We waited quite a bit, the surgery was a little late (about an hour) and discharge was really late (4 hours after we were told).  Waiting for a bed out of recovery also took FOREVER. L&D was packed. Just be prepared, its a big place, lots of patients.
• MOVE, MOVE, MOVE!!!!!  It helps the anesthesia out of your body and speeds healing.  If I am lazy for awhile it's harder to get up, but if I stand up and walk around the house at least once an hour, it helps a ton.
• Be prepared for constipation.  Dr. H prescribes Colace, but just pick it up and start taking it.  I went 5 days and it was getting really painful.  I was eating a lot, too, which of course compounded the effect.  Have some Milk of Magnesia on hand in case the Colace isn't working.  I was stressed for awhile that it wasn't going to happen!
• Go ahead and have some cranberry juice on hand - it will help your bladder avoid infection or recover.  It did wonders for me.
• Start saying NO to obligations and really take time for yourself.  I thought I was going to be SO bored recovering at home, but my mind is kind of blank right now and the exhaustion comes and goes.  I haven't even been reading at all, or needing to keep "busy."  Just sitting around petting my dogs and watching Season 6 of Grey's Anatomy has been all I've needed. 
• Oh yeah, Dr. H's TAC patients are able to "donate" a fat sample during the surgery that goes to research ovarian cancer - just to give you a heads up to think about it.  You have to sign the form to accept or decline the donation.  The research topic may change in the next few weeks, but when I was there, it was fat for ovarian cancer research.  I told them they could take it all, and the Dr. said that was what everyone said!  LOL.
• DO NOT overpack.  Your husband will be stuck with whatever luggage you bring so pack light.  I used my own toiletries (I ended up not taking a shower, but you may.  I was too skeeved by the incision still).  I didn't use any of my own clothing or socks until I was discharged.  Your pillow and a brush, toothbrush and some panty liners are about all you need.  When you are discharged, make sure to get lots of comfy stretchy pants to wear home.  If you have maternity pants, pregnant or not, they are very comfortable and give extra support. 
• If you want, give your husband a list of "chores" to do while you're out.  Mine was super bored for about 4 hours, but he had his laptop (there was great free Wi-Fi) and he updated my blog and message boards.  Also make sure he's okay on snacks, but there is no eating in the waiting room.  Keith went to the food court and got a wrap or something that held him over.  He was able to sleep in a cot next to my bed, so all in all, he was pretty taken care of.
• Granny Panties.  Enough said.

TAC Surgery Details!!!!

Sorry it's taken me so long to do this; I've been travelling and trying to recover and get as much rest, while moving as much as possible. I'll go day by day, and hope to break it into portions that make sense.  I'll do my best to warn you if things get graphic or gory.  It will.

Thursday Morning - TAC Day!

We drove in from a friends' house, who lived about an hour away in Northern Indiana.  Traffic was not NEARLY as bad as we thought it was going to be, so it only took about 45 minutes.  The University was on the southern end of the city, so no crazy Chicago traffic was necessary.  The University of Chicago is a beautiful, beautiful place.  The old, Gothic buildilngs are polar opposite of the modern, glass interiors and I wish we had had more time to look around and take some pictures.  It took us awhile to find parking, but we ended up finding the parking garage (at nearly $40 for 2 days).  We walked through the walkway to the DCAM building, found suite 2C where I was to check in, and waited in the Food Court until our 9:30 meeting.

At 9:30 am, we met with our Pastor's father, who happens to live in Milwaukee and also happens to be a Pastor himself.  He gave us some great words of encouragement before the surgery that helped keep me calm and reassured that I was being taken care of.  It was very beneficial.

At 10:00 am, we went over to Suite 2C to check in.  The sweet girl who checked us in was quite the chatterbox, and it turns out we had the same last name, with different spellings, she joked that maybe we were related?   She was African American, but hey, you never know!  She made us feel really comfortable.  She gave Keith 2 pages of paperwork to read and sign, gave him a 4 digit code to check my progress on the monitor, and told us to sit tight and she would walk us back when they were ready for us.  The monitor was pretty cool.  Keith had to wait in a waiting room with lots of other families, and there was a monitor that tracked where each patient was by their code.  It would say, "7643 In Waiting, In Pre-Op, In OR, In Recovery," etc.  Pretty cool.

Nothing could have prepared me for the cattle drive that was the University Hospital surgery center!  They do it in waves with multiple people checking in at once.  I was called back with 3 other women and we parted with our families, left all our belongings with them, and walked to the Pre-Op area.  There I was put in a chair with a curtain and was asked a series of questions, she took medical history.  Then I was asked to give a urine sample and she did a pregnancy test.  Then she told me to shut the curtain, change into the gown, socks and a hair net and let her know when I was done.  She gave me a garment bag to put my stuff in, labeled everything, then started the IV.  It hurt like a B but it was over pretty quickly.  It was the most painful thing until recovery.  LOL.  I got lots of arm bands, then once I was settled, she let Keith come back and wait with me until the OR was ready.  which was supposed to be at noon.  The Pre-Op area was packed, there was a butt in almost every chair, at least 20.  The anesthesiologist came in, asked some questions.  For some reason, I had it in my head that it was going to be a spinal, but she assured me it was general anesthesia, which was a relief to me.  We met with a barrage of "Residents" aka Nervous-but-Trying-to-be-Confident Mini Doctors who were quite redundant to me and basically asked the same series of questions each time.

Dr. Haney was supposed to meet with us in Pre-Op before the surgery.  We waited and waited, and eventually I heard one of the residents say that he was held up in the clinic, and that we should go ahead to the OR.  Keep in mind, these "Residents" were about my age if not younger.  At times, it felt like I was an extra on Scrubs.  I said goodbye to Keith and made the walk to the operating table, hopped up, they strapped me in around my legs and arms and gave me some oxygen. Dr. Haney came in and apologized profusely.  He said over and over, "THIS was NOT supposed to happen.  I wanted to meet you beforehand, they got a little excited to begin."  He re-explained the surgery, patted my leg a few times, and asked if I was ready. 

The anesthesiologist told me to think of a vacation place and I was out in about a millisecond.  Apparently Dr. Haney met with Keith for about15 minutes when I came out of surgery, and he said that everything had gone well.  When I woke up in Recovery, I just felt plain weird.  The room was buzzing with movement, there were tons of beds lined up in a row, and there was a nurse at the end of my bed with a rolling laptop waiting for me to wake up, I guess.  There was a radio blaring.  The guy next to me was talking incessantly and there was a radio blaring - I just wanted all the noise to stop so I could sleep, but I felt like no words could come out.  I was too weak to talk, but my mind was moving.  I kept drifting in and out of sleep, and Keith came shortly after.  He said the surgery took awhile, about 1.5 hours, and that he had been waiting 2 hours since I was put in Recovery to see me.  He nor I are not sure why it took so long, maybe I took awhile to wake up? 

At that point we waited for a bed in Maternity, which was apparently overflowingly full.  I didn't get a bed until after 8 pm.  Of course, too late for food.  I was starving!!!  So, a very nice orderly rolled me into Maternity - I was the LAST person out of the recovery room!  I met with my nurse, who was great.  I had a pump of pain meds that I could push every 8 minutes.  It was pretty good stuff.

Overnight - Thursday into Friday

This could almost qualify as a day unto itself.  I was woken at 10, 11, 12 for vitals. I had to wear these very stylish white leg hose along with leg pumps that help with circulation. At 4 am, I was supposed to lose my catheter, stand up and sit down into a rocking chair, and lose the IV and the pain pump.  They did cap the IV, I got the catheter out, and I started on oral pain meds (Percocet).  However, I was so incredibly nauseous that I was not able to get up to sit in the chair.  Gross alert!  I threw up a ton of ginger ale, so I was restricted on the oral meds for awhile...  Dr. Haney came around early in the morning and checked on me and apologized again about not meeting with us before the surgery.  A couple of hours later I was able to stand up and walk to the restroom, but not without assistance.  It was excruciating, I'm not going to lie.  It took full minutes just to get up and out of the bed, and each step was very painful.  I was finally able to order breakfast at 7:15, it came at 8:00, and I had a few bites of eggs and some toast and Jello or something of the like.  Since I kept that down, I was able to take some Percocet.  Immediately I felt relief and exhaustion and fell asleep for quite awhile.  TIP:   A guest tray for Keith would have been $15 but the person who took my order told me how much of each thing I could order, and I was able to get enough food for both of us.  He also had a cot to sleep in, I forgot to mention that.

Friday - Release Day!

I felt like I was in there FOREVER, but really it was such a short time.  The nurse told me that the more I moved around, the better I would feel, so I tried to get up about 2-3 times per hour, walk to the restroom or just around the room.  We had lunch, and were waiting until 1:00 when we had a sono appt, then we'd be released.  Well, we waited, and waited....and waited.  Finally at 2:30 the nurse came back and apparently they were backed up, but a "Transporter" would be here for me soon.  Finally someone showed up around 3 to wheel me to a completely different building for an internal sono to ensure the TAC was in the right place and the baby was doing well.  We got a 4D photo of the baby, which was really cool.  We could see the white glowing TAC band on my cervix.  It was very cool!  The sonogram itself was less than 5 minutes, so very quick.  We were then wheeled back to the room to finish the release procedure.

I had to wait for a Resident to write me a prescription for Percocet, do my checkover and receive a Rhogam shot.  That all happened pretty quickly, then we just had to wait for a transporter again, who wheeled me all the way to the parking garage to our car!!  THAT was service.

Anxiety Setting In...

Don't get me wrong - I'm super happy about the hope this TAC surgery will give me.  I'm just having a case of the jitters, cold feet, whatever you want to call it.  I will be flying exactly 870 miles each way from home to IND, and driving 370 miles each way from Indy to Chicago.  I'll be checking into a hospital, having tons of needles in my body, having my stomach cut open, and my cervix banded tightly.  I'll be sewn back up and left to recover. 

The reality of the surgery is setting in!!!!!!!  It's always felt like so far away, now here we are almost a week away.  I have very short moments where I'm almost scared enough to call it quits and just drive to my OB and get the transvaginal cerclage, but no WAY am I going to give up like that.

I want this, and I know it will be worth it in the end.  When I look back in a few years, it will just be a blip on the radar.  One thing at a time...

Surgery Details!

We'll stay in a hotel Wednesday night, September 8.  I'll be checking into the hospital at 10 am on Thursday, September 9.  The surgery will take place that day, I'll stay overnight, and hopefully be discharged the next day, on Friday!  Dr. H recommends staying in the city for one more day just in case I need to get back to the hospital quickly, so we'll most likely fly back home on Saturday.  This will be a VERY quick trip for such a life-changing event.

Step 2...done

Step 1 was the phone consult with Dr. Haney. Check!
Step 2 was sending off my insurance info. Check!

Here's what Aetna says.   I've lost 2 babies and the only thing that's going to work for me is this TAC.  I'm hoping and praying that it will be covered.  We've met our OOP limit for this year due to the $40k delivery/week in the hospital when I lost the twins, so best case scenario is that we pay nothing OOP.  Worst case is we pay a little, but I will fight that they pay the majority.  This can be a deal-killer for so many couples and that breaks my heart.  It shouldn't be about money.  I'll keep you updated.

EDIT: One month after surgery we received our Insurance Statement - we only owe $130 to Dr. Haney as a copay!!!!!!!!  SO exciting!  We would have made it work to pay ANY amount of money, but to have to pay so little is just amazing.  The surgery was $22,000.  Insurance negotiated it to $15k.  If you think about it, $15k is PENNIES to pay in relation to the cost of 8 weeks of NICU for a pre-term newborn, or another $40k preterm delivery.  Great job, Aetna!

A link from Liverpool... Success Story!

Video in link:

BBC - Liverpool doctors fit woman with bionic cervix

"Experts at Liverpool Women's Hospital have performed a minor miracle on a couple who had four miscarriages and lost one premature baby.

Janet Walker and Graham Lobb, who live in Windermere, were about to give up trying for a baby after six years of heartache.

Doctors at Liverpool Women's Hospital fitted Janet with a bionic cervix and she recently gave birth to Ainka.

The cervix allowed Janet to carry Ainka to 37 weeks, when she gave birth by caesarean section."

It's like our first $ bill!

I just had to scan the notes K took while we were on the phone with Dr. Haney.  Yes, he has horrific handnwriting, but these were the highlights to him.  Someday we're going to look back on this and reminisce about the day that gave us hope!

Phone Consult with Dr. Arthur Haney

We have hope!!!  Dr. Haney explained in very clear terms that what went wrong with Jonah and Noah was NOT normal, and was indeed caused by an incompetent cervix.  At this point, we are scheduling around Labor Day!  He carefully explained that there are basically a couple of ways of treating it.

1) The most prescribed way in modern America - the transvaginal cerclage (TVC).  It's placed preventatively around 13 weeks and is done through the vagina - basically your cervix is sewn shut near the bottom.  There is typically a full bedrest situation afterward, and is about 75-85% effective.  Effective, to the medical world, means live birth.  Even live births that are severely preterm with lifelong medical complications are considered success stories.  Full term, healthy birth is probably less than the 75%.  This cerclage is placed low on the cervix and the pressure of the baby can still push down, causing you to dilate and funnel.  There's a lot of pressure being placed on the cervix itself.  Water can break at any time and can even tear the cervix where the stitch is placed.  Here's an illustration, courtesy of Abbyloopers.org:

2. The less common, but more effective way is through the abdomen - the transabdominal cerclage (TAC).  A c-section like incision is made and a band (made of merselene) is placed tightly high on the cervix.  Dr. Haney said that you can lift a person off the ground with this band, it's THAT strong.  It can be placed pre-pregnancy (his preference) or during pregnancy (up to 11 weeks or so).  It's there forever, and will already be in place for future pregnancies.  I will ONLY be able to give birth via c-section. Recovery time is quick and as Dr. Haney said, "You will have a bionic cervix."  It won't go anywhere.  He said that he cannot prevent me from getting GD or pre-eclampsia, or any other kind of pregnancy complication, but he can guarantee that my cervix will be rock solid.  It can be placed via robot (Da Vinci) or laparoscopically, but the old school method is best - manual insertion by a skilled surgeon.  Dr. Haney said that in my situation, he would give me a 100% success rate for my cervix to carry to full term (38 weeks)!!!  Another illustration of the three different cerclages, again courtesy of Abbyloopers.org:

Scheduling...

Things are SO much different.  Last time, at 4 weeks pregnant, I was buzzing inside with excitement.  I felt like I had  a secret that no one could know.  I was hopeful; the two weeks before the first sono went quickly.  This time around, I'm just nervous and scared and want to lay in bed and not move.  I feel like the days are dragging by - 10 days still until the first sonogram.  I am scared to find out how many babies are in there!  K cannot get over the thought that there could be 3 in there and has been discussing what we'd do for vehicles and how many more cribs we'll have to buy. 

This morning, I scheduled a phone consultation with Dr. Haney in Chicago and we'll be talking to him this Thursday morning.  I'm nervous and I hope I'm a good candidate for the transabdominal cerclage (TAC) procedure that will take place around 10 weeks.