Category Archives: The Ins and Outs of Us

the hostile environment

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We drove to Lincoln two days later. It was really odd checking in to a medical facility that did not want my insurance card (nothing is free in life-especially medical care!). Because it was a stronger MRI machine, it was so hot! I felt on fire while I was in there, enough so it was difficult to sit still but I kept thinking, “we need good pictures, we need good pictures”.

After the tech was done he took us directly to the Radiologist’s office (the one I previously mentioned that I used to work with several years prior). We sat with him in a dark room with multiple computer monitors looking at my uterus. At my ONLY uterus! The other thing he was worried about was that there was a septum, an extra piece of tissue at the bottom of the uterus that was maybe causing some sort of weird issue but on the stronger MRI he thought he was able to rule that out. What was present, though was a softball size fibroid in the front of my uterus. SOFTBALL. SIZE. Are you freaking kidding me? How many ultrasounds had I had? How many vaginal exams had I had? Didn’t they feel that during my surgery after Noelle? I mean, seriously. SOFTBALL. SIZE. In addition, there were “many” other fibroids. He thought (but there was no way to be sure without literally going in to look directly) they all were intramural in nature, basically meaning inside of the uterine lining itself but not in the uterus. Three babies into this journey and we were just discovering this. Our frustration was enormous.

Our results were sent to the specialist in Denver and we were told he was willing to do a phone consult….with payment up front. His receptionist called, took my debit card info, put me on hold, and voila. He was on the line and all ours. He explained that he believed it was unlikely that, although impressive, they were a culprit in our issues. If we were to have a successful pregnancy, however they’d definitely have to go! They could impede on the baby’s growth because of their size.

Now, I am not an OB/GYN. I am a simple family practice gal but I had in my mind that it most certainly could be an issue. The size of the largest one, in itself, had to be taking up blood flow from my uterus. Blood=nutrition. Plus they felt that the center of the softball was necrotic, or dead. I don’t know-just kind of made me think of my uterus as a hostile environment. This couldn’t be good for any baby. It was also nice to have a reason (at least I thought this was the reason) why I have been hurting during the 3rd week of my cycle since I turned about 30.

The specialist recommended removal but stated we needed to go in to surgery with eyes-wide-open. These were some big dudes and may be difficult to remove and with this type of surgery comes a time of recovery when conception CANNOT happen. Incisions into the uterus increase its risk for rupture which is, of course, life-threatening to both Mama and Babe. If they could remove them laparscopically this would be ideal and we would only have to wait 3 months to conceive but if they had to do an open surgery, 6 months. The kicker….no one would know until during the surgery. He recommended a surgeon that was known for being very successful with removing large masses laparscopically. A lot of surgeons will automatically go straight to an open procedure with the size of my masses so we needed someone willing to at least try with a morcellator. He also wanted someone to do a hysteroscopy while removing the fibroids just to be sure there was no septum or other abnormality inside of the uterus.

Once again we were on the road to Denver and saw a new specialist at the Advanced Women’s Health Institute. It felt like a private-owned clinic, very personable. He looked at my MRI, did a quick ultrasound and vaginal exam, declaring I felt about 12 weeks pregnant (thanks softball!) and said he was willing to tackle our case. He could make no promises but he would give it his best….and, he got me scheduled quickly! We would be heading back to Denver within a few weeks!

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Temptation and maybe an answer

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In late January we received the packet of information from Conceptions listing what needed to be done prior to meeting with them. Of course, they wanted an ultrasound and HSG which I had already done. I had also had “basic labs” but they sent an extensive list. A twelve vials worth of blood list. As with everything else I had done previously ALL of my tests came back wonderful. I was especially proud of my AMH (antimullerian hormone) level. As the specialist from Conceptions said, “I am really impressed with your AMH; it is that of a young woman”. This gave us such hope as prior to this everything we had heard and were feeling was in relation to my age, like we were quite literally running out of time. The AMH is a measure of a woman’s “ovarian reserve” and good levels means higher odds for more follicles (eggs) and therefore, a live birth.

We got to spend an hour with the specialist and I will admit, his first recommendation was IVF. Conceptions is known for their expertise in the IVF field in addition to doing pre-genetic testing on the embryos before implanting them for IVF. It really is amazing stuff. Basically, they could harvest my eggs and sperm from Adam, make a baby and say, “Congratulations, Mr and Mrs Carter, we are putting in a healthy baby boy today!”. Can you freaking imagine? VERY. TEMPTING. But, just as with anything in life, it wasn’t that simple. It never is. Our concerns were two-fold. First, we believe life begins at conception and because of this we were worried about having multiple embryos (which are babies to us) just hangin’ out somewhere (in a freezer obviously). I have heard of couples with embryos in a freezer trying to decide what to do with them. You can’t just throw them away, you can’t keep having babies forever (unless you are a Duggar), and if you donate them then you will always think of your child being out there somewhere. He was able to comfort our fears regarding that, though because just as they are big on shooting for a healthy “single” baby vs. multiples, they also would only develop one embryo at a time.

Secondly, what if that embryo isn’t healthy? What if it was like Noelle, with trisomy 23 or had trisomy 21 (down’s syndrome)? Again, we believe an embryo is essentially a baby already. We could (almost) justify maybe not implanting a baby with a genetic incompatibility with life (such as with Noelle) but NOT with something like trisomy 21. Can you imagine lying there knowing you were being implanted with a baby that would have down’s syndrome. Now, a healthy baby with down’s syndrome….bring it on! My worry was if it was a baby on the extreme other end of the spectrum….such as with heart defects, etc. Wow, the emotions surrounding that would be so difficult and we could tell that this type of situation may be difficult for the specialist to go forward with as well. IVF just wasn’t for us. One more thing we discussed over and over again also was the cost—$15-25k could make a really nice dent on the cost of adoption!

Once he understood our feelings on this, he was amazing. He respected us completely and gave us other information that he thought we may benefit from. He was happy that my HSG was normal but recommended we consider getting a sonohysterogram. I had actually never heard of it but it essentially is like an HSG only it is only looking at the uterine shape and is done with ultrasound, instead of xray. If this was normal and we decided to go forward with another pregnancy he recommended we consider the Tempfer protocol. Basically, a research study was done trying several things and for some reason, somehow the women were more likely to have a successful pregnancy. Unfortunately, no one has yet to completely determine why….only theorize. But, it was something and we would take it! The protocol included a baby aspirin, both of us taking antibiotics (a zpack) at the onset of my cycle, progesterone three times daily, prednisone twice daily and folgard. The idea is that in case there is some sort of bacterial infectious issue between one of us the antibiotic would help with that. If my uterine lining didn’t thicken enough with the pregnancy, the progesterone would help with that. If there was some sort of inflammatory issue in my body that was not detectable on lab studies, the prednisone would help with this. The folgard is just a super potent folic acid with Vit B 6 and Vit B12.

Finally, he talked with us about ovulation medications (like the Pergonal mentioned previously). He, too did not recommend Pergonal but did recommend Letrozole (as a side note, he was against clomid stating the side-effect profile with clomid is higher than Letrozole and the number of multiples is higher with clomid which I have since confirmed with researching medical literature). He explained to us that the Letrozole would not help to “recruit a better egg” per se, rather would possibly help the overall environment during ovulation to be better.

Part of our discussion:

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We left Denver feeling good (the shopping also helped-IKEA is the bomb!).

The ceiling of the hotel where we stayed also was reassuring as it looked all “reproductive-like”!

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This feeling was short-lived though as I had the sonohysterogram very soon after returning home and it was abnormal. Our OB/GYN couldn’t tell for sure what was wrong-just that something wasn’t right.

I was sent for an MRI which was also abnormal. Abnormal enough that the Radiologist that read it (who happened to be an MD I referred to in my previous practice so he recognized my name on the report) called my cell phone personally within hours of the MRI being done. He requested that we come to Lincoln for a stronger magnet MRI, done by himself….free of charge. The initial diagnosis: I had a uterus didelphys. Two uteruses (uteri?). This could come with it a whole host of other issues and therefore, he was concerned.

I felt like a freak.

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The holidays after losing a baby

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We lost our third baby, Noelle Lynne’ just a few days before Christmas last year and it was just awful. Having to pretend around family that all was well in our lives (when the reality was that all we wanted to do was stay in bed and hold one another) was near impossible. But, we did it. We went through the motions celebrating our family’s traditions during both Christmas Eve and Day and I cried on the way home both times.

I am so angry that it is one year later and here we are again. Having just lost our fourth we clearly do NOT feel like celebrating….anything. We had plans to be in Montana with my brother and his family. Great plans. Adam was going to go snowboarding while I (of course I couldn’t ski as I was pregnant) thought about perhaps spending the day with my infant nephew and maybe even get a prenatal massage somewhere. We would have Christmas Eve supper at a restaurant at one of the local ski resorts and celebrate His birthday at an evening service at my brother’s church! We would see the torchlight parade-a tradition of skiers holding torches skiing down the mountain in the dark-so beautiful from afar.

But, now none of this sounds appealing. NONE. OF. IT. We actually do not even want to be around family. Talk about guilt-inducing feelings! Here we are during this wonderful time of year and there is no way in heck we are feeling jolly! Our tree is up and ornament-less! We simply do not have it in us.

This feeling of wanting to be a recluse has got to be normal, right? I am absolutely sure of it. Perhaps this is just my way of making myself feel better but I do think that it is normal to not want to surround yourself with others that are celebrating something while you, yourself are sad. We are grieving. We are grieving the fact that our lives changed forever on December 2, 2014. We will never have a biologic child. Ever.

Interestingly enough, during the week of uncertainty before our most recent loss (I will share more soon) one of the things we discussed was getting away. Just the two of us. This was one of our “coping mechanisms” last year after losing Noelle also…when we planned our Mexico trip. It is as if we could go somewhere isolated (preferable warm!) and just be with one another and be surrounded only by people that do not know our sufferings, things will be better. I know one of the stages of grief is denial and this has denial written all over it. I’m fine with that, though. I just need some time. Some space. I need distraction.

We decided right away that we would (OBVIOUSLY) prefer somewhere warm but I’ll tell you what…finding somewhere reasonable over Christmas with only a couple of weeks plan-time is like winning the lottery-not gonna happen. So, where can you go 365 days per year for fairly cheap airfare (even last minute)? Vegas, that’s where. At first I was a little concerned that it was sacrilegious to go to Las Vegas over Christmas but as long as we celebrate our savior’s birth and continue to live for Him, I think it is all good! We’ve been multiple times for medical conferences, never just to go. But, we are. And, we are looking forward to it. To the people watching (there are some definite weirdo’s out there), to the shows, to the spa (Adam loves ashiatsu massages…ahem, speaking of weirdo’s), to the food, to the shopping, I could go on. We don’t drink and we don’t gamble but this doesn’t mean we can’t have fun!

So, to our family….we love you and our absence this holiday has nothing to do with you and everything to do with us. Muah!! XO Oh, and be sure to wear your National Lampoon’s Christmas shirts and celebrate the Griswolds as we always do!!

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