Getting Worse

Saturday morning was my second follicle check. I was hoping that with the increased dosage of Follistim, I'd see some good progress and my estrogen would be up. Instead, my estrogen has dropped and I still only have one follicle in contention. I'm upping my Follistim dosage to 300 iU a night and I go back again on Monday. The nursing staff warned me that unless there's improvement, my cycle will be cancelled.

It makes no sense, but I've got this thought that keeps running through my mind: Maybe Alexis and Zoe were the babies we were meant to have. Maybe they're the only babies we were meant to have, so there will be no more. I love them so much, and I'd give just about anything to have them arriving, safe this month as originally planned, but I hope they are not the only children we'll be parents to.

Here are the numbers this cycle vs. last:

Last cycle:
CD10, after 7 nights of Gonal F 150 iU
Right = 19, 13.6, 7
Left = 16.5, 15, 10, 8
LH = 1.03 miu
P4 = 1.66
E2 = 1294

This cycle:
CD9, after 4 nights of Follistim 150 iU and 3 nights of 225 iU
Right = 14.5
Left = 9.5
LH = 1.15 mIU/mL
P4 = <0.05 ng/mL
E2 = 432.4 pg/mL

On the Coaster

At the start of this cycle, I reminded myself that every ART cycle is a roller coaster. You get good news and are feeling good, and then you get crap news and are sure you're out. Rinse and repeat until the end of the cycle. That definitely happened last time, and I knew it would happen this time.

Last appointment: Uterus looks good, both tubes are open, ovaries look great. Great news! Thrilled and expecting good outcomes from cycle.

Today's appointment: First monitoring appointment of this cycle. Compared to last time, it's looking pretty terrible, and I could tell the nurse was disappointed. I only have one follicle in contention, compared to 6 last time. Out of 6 last time, we got 4 mature eggs and two healthy embryos. This time . . .? Let's just say I'm feeling like we're out, and it's only the 5th day of stims.

Numbers are below.

Last cycle:
AFC = 9
CD7, after 4 nights of Gonal F
Right = 11, 9, 8.5
Left = 12.5, 8, 8
LH = 8.24 miu
P4 = 2.68
E2 = 803

Today:
AFC = 4
CD6, after 4 nights of Follistim
Right 9.8
Left 6.5
LH =
P4 = 
E2 = 
Lining 5.9 mm

I increase my Follistim dose to 225 iu/night, and return on Saturday for another look. 

Back At It

It's official - we are cycling again. My cyst check ultrasound showed no problematic cysts, and my blood work was normal. I started Follistim, 150 IU, and Estrace, 2mg, twice a day, yesterday. My RE said the Doxy wasn't necessary, since I'm finishing up a z-pack thanks to an ear infection.

First ultrasound will be on the 1st.

It's entirely too much to ask for, but I'll ask anyway: I want what we had last time, just with an additional 20 weeks of pregnancy, and healthy babies who come home with us, in our arms.

How it Ended

This is the last part of Zoe and Alexis’s story. I’m going to share what I remember, and what I know must have happened. In light of how sick I was, I’m sure I’ve lost time, and probably some of these memories are inaccurate. I hate that, but then I hate most everything about what happened.

When we arrived at the hospital, they took me down for another ultrasound, to see if Alexis still had fluid. The good news was that she did, but Zoe’s AFI was zero. They told me that Alexis’s water hadn’t broken, which I still don’t believe. They also couldn’t see my cervix, because Alexis’s head was blocking it on the ultrasound. I went back up to L&D triage, and they hooked me up to the contraction monitors. I was having measurable contractions at that point. One of the OBs from my group came in. She told me that I did seem to be having contractions, but since Alexis’ water hadn’t broken, I could go home or she could admit me, it was my choice.

I was honestly confused by this. I was in labor and told her I’d rather stay as I didn’t want to have the babies at home. That seemed dangerous. She agreed it would be better if I stayed. Since it seemed likely I would deliver, we decided to do an internal exam. We hadn’t done one up until then to reduce the risk of infection. However since it seemed like this was the end, the infection risk didn’t matter. She checked me and reported I was 2 cm dilated. Just as she was about done, she said “Wait a minute.” Then she paused, and then she told me, “I can feel a foot.” I had logically known we were at the end before then, but emotionally I’d still been holding out hope. When she told me she could feel Alexis’s foot, though, that was it. We agreed that I’d be moved to a room in L&D and we’d focus on pain management from that point forward. Somewhere in there, someone told me that I should expect to deliver the next morning.

I was taken to a room in L&D. They gave me the last room at the end of the hallway. It was a nice room – two windows and a decent but tiny bathroom. They gave me dilaudid, which made me feel drunk and cut back on the pain. I could feel the contractions, and they weren’t pleasant, but they actually hurt far less than my digestive system did. I’ve known a few people who said their epidurals wore off before delivery, and I wanted to avoid that, so I wanted to delay the epidural as long as possible. I made it about 2 – 3 hours on the dilaudid, and then got the epidural, and it was wonderful to be out of physical pain for the first time in a week. I shook pretty badly right after the epidural was started, but it stopped after a while when I was able to relax.

The nurses encouraged me to get sleep over night, and they’d check me the next morning. DH made a bed on the folding couch in my room, and my Dad and MIL camped out in the hallway next to my room and in the waiting room. I wasn’t in a good place physically or mentally at this point, so I wasn’t super aware of anything happening outside my room.

I woke up early Monday morning to a sunbeam shining in the window, across my belly. Every single day I was pregnant, I’d wake up early (insomnia) and I’d put my hand on my belly and talk to the babies. Seeing the sun across them that morning seemed like some kind of sign, so I spent some time telling them they would always, always be loved, and that their great grandparents would be waiting for them, that I was so grateful to have gotten to be their mom and I wouldn’t ever forget them.

Eventually the nurses and my doctor came in. My doctor checked me and said she could feel Alexis, so I should try pushing. I didn’t track the number of pushes or the time at all, but Alexis Marie was born at 7:45 am. The nurses cleaned her and gave her to DH and I to hold. She was so beautiful. She had a perfect little nose, and mouth and eyes. I’ve never loved anyone so much or hurt so badly. DH invited MIL and my dad in, and they got to hold her and say goodbye too.

At that point, my doctor told me that Zoe hadn’t moved enough to deliver, and I was still only 8 cm dilated. She put me on Pitocin and said she’d check me again later. Thus, Pitocin was started.

At this point, my memory gets really fuzzy. Sometime around 3 that afternoon I had maxed out the Pitocin, and it was determined that I still wasn’t ready to deliver. I don’t remember being checked, and I remember wanting to try pushing although not feeling any need to do so. My doctor (who I don’t remember seeing) ordered a high dose or oral cytotec. She probably did check me, but like I said, I don’t remember any of that. I remember looking at the cytotec pills and being nervous, because they were pills, so if it didn’t go well, I would have to wait for them to wear off. Apparently that was foreshadowing. I also realized the epidural was wearing off, so I asked the nurse about getting it topped off again.

Within minutes of taking the pills, I started having fully body convulsions. It was like the epidural shaking, but so much worse. I couldn’t open my eyes, no matter how hard I tried. I started to hyperventilate, and realized it, so I focused all my energy on calming my breathing, but my whole body was convulsing all over. If I focused with everything I had on relaxing, I could minimize the convulsions, but as soon as a contraction would hit, they’d start again. DH was trying to touch me, but his touching me was like more stimulus to make the convulsions worse. If I paid attention to anything at all other than relaxing, they’d just take over.

Somewhere in there, I thought I might have been pushing, but it was impossible to tell what was real and what was spasms, and talking was nearly impossible too, so I didn’t say anything. I remember hearing them page my doctor repeatedly, but she never came. Because Zoe was born at 5:45 pm, I know I must have pushed her out. It must have been during that period, but I truly don’t know. I remember hearing the anesthesiologist come in. I remember hearing that they couldn’t get my pulse or blood pressure any more. I remember feeling all the contractions. I remember the anesthesiologist taking charge of the room, ordering epinephrine, and getting my blood pressure back. I remember hearing someone say that the placenta wouldn’t deliver, and hearing the anesthesiologist saying that we needed an OR because they couldn’t fix that in the room. I remember hearing him order an OR for us, and telling the people in my room that he wanted that OR ready by the time we got down there, and he wanted blood waiting for us by then, and he wanted an OB waiting, because there wasn’t time to lose.

I remember yelling at DH to tell Zoe I loved her. I still couldn’t open my eyes, and physically trying to talk was so hard, but I needed her to know. I think I also told him to say goodbye to her for me. I remember feeling my bed moving down the hall pretty quickly and feeling it hit the wall hard. There was construction on the L&D floor, and the hallway was partially blocked by it. I remember the doctor saying something about the bed, and everyone getting their hands clear, and we backed up and were moving again. I remember feeling the elevator, hearing the doctor sarcastically ask for “a little help here” to move me from my bed to the operating table. I remember someone taking my sock off, starting another IV, putting an oxygen mask over my face, and then feeling someone’s fingers right at the base of my throat. My last conscious thoughts were “why would someone be feeling my Adam’s apple?” and then “they’re going to intubate me. This must be worse than I thought.”

I woke up in post op around 10 that night. I was told that I had hemorrhaged severely. My OB had done a d&c to remove the retained placenta. They’d done a blood transfusions and when I seemed stable, I’d been taken to post-op and my DH had been informed all was well. At some point after that, before I regained consciousness, I’d started to hemorrhage again. It was bad enough that they didn’t even inform DH, just took me back for surgery again. They were able to stop the bleed that time. Eventually I was taken up to a bed in critical care, and after another blood transfusion there the next morning, I was returned to L&D for one more night, while they kept me on antibiotics to deal with the massive infection I’d had. I never saw or held Zoe. They’d have brought her to me the next day, but I knew she’d have been in the morgue. I didn’t want to remember her cold and still. I just didn’t think I could handle that, so I never saw her. DH tells me she looked like her sister, which is a very “guy” kind of a description, but it’s how I’ll remember her.

Wednesday afternoon I was discharged. My nurse was Jeni – the same lovely woman who had been with me during my first admission. All of the nurses were amazing, but it was nice to see Jeni one last time before leaving. When she wheeled me out to the curb so DH could pick me up, she realized that another nurse and new mom with baby were waiting at the pickup door. Without saying anything, Jeni found another place for me to wait, so I didn’t have to be there with the other happy couple who were taking their baby home. I’m grateful for that.

Those are my memories. They’re not pretty. It took three months for me to be out of constant physical pain. I will always regret that I never saw or held Zoe right after she was born. I know I got extremely lucky that the hemorrhaging stopped and I kept my uterus. It could have easily gone the other way. I feel like I should have some great closing for this entry, but I don’t. The only closing that I have is that I’m a mom to two beautiful girls, and I miss them. Zoe, Alexis – I love you.

Worst Days of My Life, part II

I left the hospital on Monday. At that point, I had an ultrasound appointment scheduled for Wednesday, to make sure the girls were both still alive. My doctors scheduled it at my request, because I was so upset and wanted to know that I hadn’t already lost one or both babies. If we made it until the following Monday, my anatomy scan was scheduled for that day – 18 weeks and 1 day.

The days at home were brutal. I was in so much pain. My digestive system remained in haywire mode and I was in so much pain that there were times I couldn’t make it back to my bed from the bathroom. I just had to stop and lay on the floor and try to breathe. I’ve had long standing issues with my digestive system that I was told would require surgery one day. Everything that was happening exacerbated them, making the pain even worse. The fact that I had to remain sitting down all day compounded it further. There’s nothing like having a sore bum and not being able to get off it.

I had been told that babies can continue to replenish their fluid, so I was drinking as much water as I could. That meant that every single time I moved at all, water would leak out of me. It was constant, and I was constantly wet. As the days passed, the rash on my hands spread, and eventually wound up covering my bottom as well. My OB said dermatitis, and told me to use aquaphor on my hands, but that seemed to make it worse. It was really just one more type of pain along with the rest, but it sucked because it meant that I couldn’t hold DH’s hand.

Tuesday morning came and we breathed a small sigh of relief, because there were no signs of labor, and my temperature was still looking normal. We’d crossed the 48 hour milestone. The next one would be one week. If we made it a full week with no infection, there was a good chance of keeping the babies in, at least until viability at 24 weeks. I wasn’t sure how I felt about that, since I knew babies born at 24 weeks face incredible struggles. Only about half survive, and a large percentage of the survivors have permanent impairments due to prematurity. I didn’t want that for my girls, but I certainly didn’t want to lose them, either, so mentally it was tough. I spent many hours out of each day holding my belly, talking to them, and telling them to stay put, stay healthy, and keep growing. I must have told them their dad and I loved them about a thousand times over that week.

Throughout all of this, my family was AMAZING. They got a mini fridge, and moved that and a toaster over up to my bedroom, so I could get myself food. They moved a big armchair up to the bedroom, looking out the window, so I could sit and watch the antics of our squirrels as they tried to eat all the crab apples from our crab apple tree. They cooked the most amazing food. And something that touched me an insane amount: they got a folding table and chairs, and brought it up to the bedroom so that we could eat meals together. That one bit of ‘normal’ made so much of a difference to me. I was in pain. I couldn’t eat much. I felt awful. But it was still so wonderful to sit with the people I loved and have a normal lunch or dinner.

My friends were also awesome. They sent me a ton of things to keep me busy on bed rest – coloring, books, candy. They checked in on me all the time. You can see LBG and one of the coloring books here, along with my chair looking out the window. This was pretty much my view for that week. Bed and the chair.

To our relief, Wednesday’s ultrasound showed both girls were still alive, but Zoe’s AFI was only .6. Knowing that we needed a value of 2 or greater to develop her lungs was tough. The check showed no sign of infection, so we headed home to continue to wait.

Thursday I woke up ok, but my temp went up to 99.2 at 2 pm. I called my OB’s office, and was told to stay home unless it broke 100.5, but that they’d schedule a Friday appointment to check me out. Thursday afternoon I hit 100 exactly, and thought the end was probably near. By 2 am Friday, I was down to 99.2, and I was back to 98.6 at 7 am Friday. At the appointment, my temp was normal and as I had no uterine pain and no foul discharge, I was sent home again, with instructions to keep monitoring things and come back for my anatomy scan as planned on Monday. Our next milestone was going to be Sunday morning, and we were all hoping I’d make it there.

Sunday morning I woke up in pain like always. I feel like I’m being a whiny baby complaining about it, but the pain was so severe that it really became my entire world. Pain, leaking water, fear, and gratitude for my family was pretty much all there was during that week. I don’t know why, because nothing at all was different, but I had the very clear thought on Sunday morning that I was almost to the end. I’d been telling myself the whole time that I could live with this overwhelming pain for the next four months if it meant saving Alexis and giving Zoe a chance, but Sunday morning I had this feeling that I wasn’t going to have that option. I reminded myself that Sunday was a week out, my temperature was still good and I’d stopped bleeding. The only thing that was leaking was clear, metallic smelling fluid, and that meant our chances were better than ever. That didn’t stop the feeling.

Sunday proceeded like a normal day. Breakfast and lunch with the family. Lots of water. Diarrhea. Pain. Leaking fluid. Sometime around 2 or 3, though, leaking fluid turned into another gush. I got up, and more fluid soaked through the pad I had on. I changed, but it happened a second time, at which point I called DH and told him we should head to the hospital, because I thought Alexis’ water had probably broken, too. DH, MIL, my dad and I all got in the car with a bag for my husband, and headed in. I called my OB’s office and left another message. Like the previous week, they called back while we were en-route and let me know that L&D would be expecting me.

Worst Days of My Life

I’ve thought for a while that I should share more of Alexis and Zoe’s birth story. It’s not a happy read, but I want to remember it. I want to remember them. I’ll split this into several parts because it’s so long. Here’s the first part.

My mom was out visiting us in October. She helped prep the nurseries and she took care of our yard. Since I was still retching on the regular and puking on the occasional, DH and I were so grateful for this. Mom was scheduled to fly home the day I hit 17 weeks, and then come back for Xmas. We took her out to dinner the night before she left.

That night, I woke up in the small hours of the morning with intestinal cramps. I spent quite a bit of time on the toilet, then went back to bed, and got up a bit before 7 when I heard my mom up. I went to start toast, and realized I had to run to the bathroom again. When I got there, I had more intestinal cramps, but just when I thought that was done, there was another big cramp, and a gush of air and water. I got scared for a minute, and tried to tell myself that I’d just farted and peed simultaneously. I told myself I was just getting scared for no reason, and I’d feel silly about it later. I sat still for a while, and when no more water came out, I stood up slowly. Still no more water, so I cleaned up and went back to the toaster. DH came downstairs right about then and started to make eggs for breakfast.

While standing at the toaster, there was another gush. I could feel it soak through my pants. I ran back to the bathroom, confirmed that it was clear fluid, and yelled to DH and my mom that I think my water just broke.

No surprise, they weren’t expecting to hear that from me. I was trying to keep my shit together, so I told DH to get my car keys and my wallet from upstairs, and I was going to grab a towel, head to the car, and call my OB while DH drove me to the hospital. My mom grabbed her suitcase and we headed off, while I left a message with my OB’s answering service.

The on call OB called me back while we were en-route, and told me he’d make arrangements to have me admitted straight to L&D triage, where they’d do a swab and potentially an ultrasound. DH dropped mom and I at the curb and the front desk ER staff got me a wheel chair and navigated the maze up to L&D. When we got to the triage front desk, I could only manage to get the words “I’m 17 weeks pregnant with twins” out before I started sobbing too hard to add “and I think my water just broke.”

They got me into a triage room, got me undressed, and at first things looked mostly dry. When the nurse went to do the swab test, the water started coming again. She sent the swab to the lab. I told her that I’d never before so badly wanted to be told that I’d peed myself. Eventually the results came back: amniotic fluid. DH, mom, and I were taken back down to the u/s to see exactly what was going on.

The u/s screen showed right away: both girls still had heartbeats, and both girls were still moving, but one baby no longer had any fluid. The sonographer told us that it was Baby B, Zoe, whose water had broken, which was a shock to everyone. Usually the lower baby’s water will break. I was sent back up to triage after that.

At that point, the doctor from my practice came in. They told me they’d admit me for observation overnight, and so MFM could consult with me in person on Monday, but that there wasn’t anything they would do to stop labor if it began and chances were pretty good it would. MFM later reiterated this – that the risk to me of trying to keep the babies inside once labor started after pPROM was too great. DH and I got no say in the matter. We were told that I’d most likely deliver within the next 48 hours, and the most likely cause of the rupture was infection.

Somewhere in there, my mom caught a cab to the airport. We were taken to a room in L&D, and had the most amazing nurse, Jeni, with us for most of this time. Like many of the nurses, she held my hand, gave me hugs when I needed them, and was so incredibly compassionate that I’ll always be grateful.

We called my MIL, and she arrived late that evening on the first flight she could get. I sent my dad and step mom a text to tell them what had happened. They reached out to DH, told him they wanted to come out too, which they did. I was so incredibly grateful for all of their support. The day before my water broke, DH, my mom, and I had gone to Babies ‘R Us to register. Mom found this absolutely adorable stuffed giraffe, and bought it for the girls. At some point, DH went home and brought the giraffe back, to watch over us. This is as unflattering of a picture of me as possible, but you can see LBG (Little Blue Giraffe) keeping an eye on things.

At that point, the waiting game began. I was told to monitor my temperature every four hours. Anything over 100.5 would indicate infection and require me to deliver. So would any foul smelling discharge. I had lots of clots and bleeding, but nothing that didn’t just smell metallic.

The next morning came with no fever, no discharge, and no labor. 24 hours past rupture was the first milestone, so we were thrilled. MFM came and told us that it’s so rare for Baby B’s water to break that they couldn’t predict what would happen. I might already have an infection, since that’s the most common cause of pPROM. If I didn’t, then Baby A, Alexis, might block infection from getting in, allowing them both to make it to term.

Then the MFM shared more bad news. Babies need amniotic fluid for lung development. Unless Zoe had an AFI of 2 or greater (fluid level), her lungs probably wouldn’t develop, and she’d likely die at birth. With this knowledge, we were sent home for home bedrest. By the time I left the hospital, I had a horrible rash over both of my hands. Red, painful bumps. I was also in an incredible amount of pain from my digestive system, as I kept having bowel movements and cramps every few hours, which had already triggered hemorrhoids and a fissure. I knew 48 hours was the next milestone, and I just prayed we’d make it.

All Clear!

Yesterday was the saline sonogram and FemVue procedure, used to test tubal patency.  I wasn't looking forward to it, but I wouldn't proceed unless my tubes were open, so the FemVue was necessary.

During the HSG I had done to check tubal patency last June, only one open tube was visible. It also showed that my uterus was almost fully blocked. I got very sick afterward. As a result of all that, we suspected that the images of my uterus were bogus, but there wasn't necessarily a reason to suspect that the blocked tube was false. Thus, I wasn't expecting good news on Friday.

Expecting it or not, good news is what I got! Both tubes are clear, and my uterus shows no signs of scar tissue. My RE spent a long time checking out my uterus via saline ultrasound. One of the absolute best sonographers was at the helm, so I know I was in good hands. They wound up pushing saline at least four times to get all the images they needed, and while that wasn't comfortable, it wasn't anything compared to what I've been through in the last few months.

Once everyone was happy with my uterus, and by happy, I mean that the words "that doesn't look too bad" were uttered, it was time for the bubbles. That triggered a tiny bit more cramping, but it was NOTHING compared to the HSG. Honestly, it wasn't any worse than the SIS itself. Best of all, everyone could clearly see the bubbles coming out the end of both of my tubes!

We ended by taking a look at my ovaries, which my RE said were looking great. Given my 0.4 AMH, I consider that high praise. Overall report was that everything looked good. My RE was surprised by how good it looked, as was I. I am doing 5 days of doxycycline now, and then we start my next treatment cycle on CD1!

I feel hope for the first time in months. But that's actually tough, because I feel like I'm being disloyal to Zoe and Alexis for feeling hope. As if I'm devaluing them by wanting to try again. I know I"m not. I know I will always love my girls. I know that no other babies that might exist will take their places, but it's still hard.

So, here is to my beautiful girls, who will always be my first babies. And here's to hope and a glimmer of possibility that someday the vacant nursery downstairs will be filled and the wonderful quilt my mom made will become the favorite lovey of a tiny person.