It has taken me awhile to be ready to blog about the answers, the long-awaited answers we received in Omaha. I wanted to wait until I could do right by that post. Although I've given many a brief synopsis of what we found out, I have yet to really tell the whole. long. story. Writing like that is daunting and requires time and inspiration for me to feel up to it. Those of you with littles know that those two things rarely strike simultaneously. Today though, Ira is on Spring Break and my wonderful in-laws invited both kiddos to spend the day and night at their house. After some quiet time and prayer, I'm feeling moved to share. I'll try to pick up where I left off in Journey to Omaha.
So when I last wrote, I was still up in Omaha waiting for that pesky follicle to rupture. When I went for my scan on Tuesday morning, the follicle was gone (which means it ruptured.) The sono tech said that she believed Dr. Hilgers would classify the build-up and ovulation as normal. Which was both a relief and a "huh what?" all at the same time. Obviously it is good any time tests come back normal. It is a sign of healthy function, which should be the goal of all medicine: to restore the body to proper and healthy function. But when you've had five miscarriages with no explanation, tests coming back as normal don't really help identify the problem. Normal results rule out problems, but they don't provide solutions. With relief and more questions than answers, I headed home on February 19th, a week and a day before my scheduled surgery date. Omaha was supposed to get hit with a blizzard on Thursday, so I was glad to get out ahead of the storm. The drive back was sunny and windy (seems like it was always windy when I drove to and from Omaha...) I picked up Ruby and made it back home just after Ira got out of school.
The weathermen were predicting heavy snow for our area that Wednesday (the 20th), but when we woke up, it wasn't snowing. Ruby and I went to morning Mass and as we left Mass, it was snowing pretty big flakes. I was supposed to go to my parents' house because my uncle was in town, but my tooth et al was really, really bothering me (the side of my face with the crown, my face, ear, head, and neck were so sore that Tylenol four times a day was not even making a difference.) I wasn't sure if it was all tooth-related or two separate issues (like maybe an ear infection?) so I thought I'd go to my regular doctor to see if he could make heads or tails of the problem. I was going to leave Ruby with my parents, but as we got closer to town, the snow got heavier and heavier. When we got to my parents' house, the radar looked ominous, so I just took Ruby with me, in case we needed to head home to avoid getting stranded. On the way to the appointment, I called home to check our messages to make sure that Ira's school hadn't called to cancel. They had. Ira would be getting out of school at the same time as my scheduled appointment, 11:00. Thankfully, I was able to get a hold of one of Andy's aunts who was able to pick Ira up from school and watch him so that I could go to my appointment. The roads were treacherous across town, but we made it to the appointment on time.
My beloved doctor, the doctor who helped us after our first three miscarriages and who helped us have our sweet Ruby (& who has studied under Dr. Hilgers) was excited to hear how things in Omaha were going and what we were finding out. He examined my face, head, neck, throat, ears, and said he really thought that the tooth was causing all of the other problems. He wanted to prescribe an antibiotic (because he really thought the tooth was infected) but when I asked him if that would mess with the uterine cultures that Dr. Hilgers wanted to do during surgery the next week, he said it very well could. He advised me to call my dentist and said if I still needed antibiotics when I got back to call him. He prescribed some pain medicine as well, so Ruby and I stopped on the way home to pick that up. I also called the dentist. He said it definitely sounded like I needed a root canal. His office was able to schedule one with an endodontist (is that right?) for Monday the 25th (the day before we'd leave for Omaha again.) The snow was tapering off and it wasn't very cold out, so after I picked Ira up, the kids went out and played in the snow. That ended pretty abruptly when Ira whacked Ruby right under the eye with a metal shovel (it was a sincere accident.) Neither was really in the mood to play in the snow after that, though. Ruby had a nice shiner for weeks. Andy made it home from work without any trouble later in the afternoon. Ira's school called that evening to cancel for the next day (as more snow was predicted.) Hooray for a snow day!
The next morning (Thursday the 21st) we awoke to tons of snow and it was still snowing. Andy said he would try to get to the highway to see if he could make it to work. He came back inside after 5 minutes because he couldn't even get his truck out of the driveway! We had a fun day at home as a family. Andy and Ira spent the afternoon digging out our driveway and a path to the road. Ira's school called again that evening to cancel for Friday.
Friday morning, Andy was able to make it to work (the 50 minute drive took him 2+ hours.) Crews spent the day clearing the roads, and by the time Andy headed home, the roads weren't too bad at all (except for the big highway from town, someone dropped the ball on that one completely!) As soon as Andy got home, we turned around to take my rental car back. We made it just minutes before the rental company closed, thank goodness! Andy's parent's called to see if we wanted to go to our Parish's Fish Fry for dinner, so we headed home to meet them there. Apparently everyone else was as tired of being cooped up as we were, because the Fish Fry was packed. It was good to catch up with people from our parish and fill them in on what we had found out so far. When we were watching the news that night, the weathermen were predicting another big snowstorm to hit Monday (we were supposed to leave early early Tuesday morning to go back to Omaha.) We talked about maybe leaving early to get out ahead of the storm, but decided the root canal was pretty important, so if things were looking bad, we would leave immediately after the root canal and drive all night if need be.
Saturday we took the kids sledding at the spot to sled in town. Andy & I had never sledded there either. There was a bit of a miscommunication about who was grabbing my coveralls, and we ended up in town without them. I had a major meltdown/fit. Not one of my finer moments at all. (Sorry, honey.) It took Andy threatening to pack us all up and go back home for me to shut up and calm down. (I really wanted the kids to get to go sledding.) We ended up having a great time and the missing coveralls were scarcely missed. We sledded until Ruby and I were fuh-reezing, then ran a few errands, went to dinner, and got home in time to put the kids to bed. While Andy was putting the kids to bed, I got online to check what the forecasters were saying about Monday's storm. It hit me like a ton of bricks that they could close the highways and we would not physically be able to get to Omaha on Monday or Tuesday. When Andy came out from putting the kids to bed, we decided that it would probably be smartest to leave on Sunday after Mass to get out ahead of the storm. We had not come this far to miss our appointments and surgery because of a stupid snowstorm. Initially, we planned to have Ira go to Andy's parents and Ruby go to my parents on Sunday, that way Andy's parents could take Ira to school (if they had it) on Monday. I was pretty unsettled about that because Ruby did alright, but not great with me being gone the last time. I was very nervous how she would handle both Andy & I being gone and being separated from Ira, so we made the decision that both of the kids would go to my parents' house, and we would hope for the best as far as getting Ira to school. I would have to miss my root canal, but again, the appointments and surgery were far more important to us.
It was a hassle picking up the rental car on Sunday (most of the locations were closed) and we had to drive way out east to get it, but we finally got everything transferred over and the kids settled in at my parents' before getting on the road around 3:30. The drive there was uneventful, although we could see clouds to the west. Ira's school called in the evening to cancel for Monday in anticipation of the blizzard. We ate dinner at the I-80 junction, and when we came out from dinner it was snowing. Luckily the storm was moving slow enough that after 30 minutes of driving we were out of it and made it to Omaha with nary a problem.
With no appointments on Monday, we went to Mass at the Cathedral, ate a great lunch at Petrow's, and went shopping for Ruby's birthday present. It was a really nice day together. We kept in touch with my parents who said the blizzard was slow in arriving (didn't really start in earnest until Monday afternoon/evening.) Ira's school called again in the evening to cancel school for Tuesday.
Tuesday morning we got up and around and went to lunch at The Old Mattress Factory in downtown Omaha (again, great food!) I had pre-op blood work and a meeting with the anesthesiologist (wow I'm totally geeking out because I spelled that right without spell-check) at Creighton University Medical Center where my surgery would be the next day. The whole surgery thing became very real when we walked into the hospital. A laparoscopy is a pretty common procedure, but it is surgery, nonetheless. We had just enough time after our appointment to go back to the hotel and pray a rosary before heading to my pre-op consult with Dr. Hilgers.
When we got to the Institute, I think Andy had that same moment of "wow, this is really the place" as I did upon first seeing it. I had to slow my pace to walk with him so that we could bask in the moment together. The receptionist let us know that Dr. Hilgers was still at CUMC finishing up surgeries, so he would be a little late for our appointment. We spent time in the waiting room looking through the "miracle albums" - photos of all the babies Dr. Hilgers has helped into this world over the last 25+ years. Before long, the nurse called us back. Dr. Parker, a doctor doing a fellowship under Dr. Hilgers, did a complete head-to-toe physical examination and asked about three bazillion questions to get a thorough and accurate picture of my health and background. He left the room and I redressed and went to the bathroom (a door right off the exam room.) When I was in the bathroom, I thought I heard someone come in, and sure enough, when I opened the door, there was Dr. Hilgers, smiling and approachable, sitting at the consult table chatting with Andy.
He warmly shook my hand as I sat down, and proceeded to go through all the tests that we had done up to that point. He admitted that my NFP charts looked crazy, exhibiting a myriad of problems: long cycles, tail end brown bleeding, continuous mucus, and mid and end of cycle spotting, but he also concurred with the sono techs about the normal ovulation. He acknowledged that the sono techs had identified potentially Poly Cystic Ovaries. He went through the hormone panel that I had completed in December, saying estrogen and progesterone levels were pretty much right where they needed to be. He speculated about endometriosis, as their research has revealed that 85% (!!) of women with recurrent miscarriages have endometriosis. And he closed by saying that he was pretty sure that the surgery the next day would tell us a lot.
Now, I wish I could tell you that I left the appointment positive, reassured, and confident that this whole crazy journey had been worth it. In reality, I was defeated, depressed, and doubtful (this was before I was seeing improvements with the TSD, btw.) What I got out of the appointment was this: "We still have no answers for you, everything looks pretty much as it should except for your whacked out NFP charts." Seriously?! But Andy, my eternally, incredibly, always-seeing-the-best-in-every-situation, husband got something entirely different out of the appointment: we will know a lot more tomorrow. I called my best friend who said, "even if you don't get the answers you were seeking, you will have peace of mind that you've done everything you could." So true, but a tough pill to swallow nonetheless. I painted my toenails and completed all my surgery prep (enema, shower, anti-bac scrub down that left me terribly itchy) and tried to go to sleep.
We got to the hospital shortly before 8:30 for surgery scheduled at 10:30. I got into the hospital gown, put ted hose on (anti-embolism precaution), took my contacts out, and tried not to worry (and luckily I guess?, because of my itchy reaction, did not have to go through the anti-bac scrub down again.) The nurse started an IV. Andy was allowed to come back when I was finally settled (around 9:30 am) While we waited for surgery about three bazillion people came into my pre-op room to check on me: my nurse, an anesthesia resident, the anesthesiologist (who had a French accent and was so difficult to understand... as he was leaving he asked what my "het" and "wet" were... it took me forever to realize he was saying "height" and "weight"), Dr. Hilgers, followed by Dr. Parker (it was funny when he walked in because I recognized him but couldn't place him at all until I saw his badge) and the nurse a couple more times. The time passed rather quickly and it wasn't long before the French anesthesiologist was in giving me some stuff prior to the nurse wheeling me to the OR. The last thing I remember was the nurse saying, "The anesthesiologist gave you quite the cocktail".....................................................................................................................................................................................................................................................................................................................
And then I woke up in the recovery room. Sick. Feeling so nauseous. There was a nurse there when I woke up and she asked how I felt. I said "nauseous" and she said they'd already given me 2 (or 3?) medications (apparently I had been "awake" (and able to convey how I felt) prior to that, but I have no recollection of that (which is so weird to me, but whatever) but that she would page the doctor. I fell back asleep and woke up again when she came in again saying she was going to give me some Phenergan. I gagged and threw up. She was standing on my right side waiting for me to roll over and I guess I thought the Phenergan would go in my IV or something (she probably told me exactly what she was going to do, and what I needed to do but again, I was pretty groggy...) (Again, I'm guessing) she asked me to roll over on my left side. When I realized (as the needle went in) that she was giving me a shot in the butt, I tried to relax as I had with the progesterone shots. (Apparently I didn't do too good of a job as I can still feel where she gave me the shot.) She asked me if I thought I'd be able to go home (well the hotel, whatever) that day or if I needed to stay at the hospital. I said, "I'd sure like to." I fell back asleep and when I woke up, I felt a lot better. As I waited for them to transfer me to the post-op room (where I could finally see Andy) I remember wanting to know what (if anything) they had found.
I waited (sleeping on and off) for what seemed like forever for Andy to get to the post-op room. When he got there I immediately asked if they'd found anything. Sure enough, Dr. Hilgers had found endometriosis and uterine polyps. I cried. Out of relief. Out of joy. Over answers. We finally had something that wasn't right. One of the times I woke up, I realized I had a wooden rosary taped to my right hand (carefully with the crucifix in the palm.) The nurse had asked prior to surgery if I was Catholic and if I wanted a rosary from Dr. Hilgers. She said that he takes the rosaries to the Vatican when he goes and has them blessed by the pope. I had no idea it would go with me to recovery. How beautiful.
Now, to be frank, to be dismissed from the hospital, they needed me to pee, so they really pushed the IV fluids. I slept a lot. They had an ice pack on my stomach. I finally woke up around 3:30 and needed to pee. The nurse walked me to the bathroom (yeah, up and walking 4 hours post surgery.) I still felt pretty groggy, but I knew I'd be more comfortable back at the hotel, so they proceeded with dismissal instructions and I got back into my own clothes and we left (the hospital has free valet parking, how cool is that?! Andy went down ahead of me to request the car and when I got down there, the car was already waiting.)
That afternoon and evening (and night) was hard. When they do the laparoscopy, they pump your abdomen full of carbon dioxide gas so that they can work around the organs. Despite removing what they can, some gas remains behind, and can cause pain (shoulder pain in particular), which I was aware of. I was not aware of how bad it would hurt. It was the weirdest pain and difficult to describe, but I'll do my best. First off, I was so bloated. My stomach was huge and I couldn't "suck it in" for the life of me (not that I really tried, but it was awkwardly distended.) Secondly, whenever I moved, the air in my stomach did what air does - it follows the laws of gravity. So it would rush (with callous disregard for my organs) to the highest point. That meant if I laid on my left side, the air rose to the right side. If I sat up, or stood up and walked around (which I tried to do when I could, as it's supposed to help) the air rose to the top of my abdomen, causing pain in my right shoulder, and pushing on my lungs, making it excruciating to take even a shallow breath. Using my vast experience with the laws of gravity, I devised that if I laid on the bed with my head on the pillow and my butt up in the air, the gas would "rise" to my butt and take the pressure off of my lungs. Pretty, huh? It worked. The gas wasn't comfortable down (up?) there either, but it was better than when I could hardly breathe. So I would cycle through all these positions: butt up in the air, slowly trying to lay down (to avoid the rush of air bubbles with callous disregard for my poor innards), laying on one side, the other, sitting up, getting up and walking around. The pain was sharp and seriously took my breath away when I would change positions (there is seriously nothing like the feeling of having your tender guts pushed all over the place.) I would rather go through childbirth. Contractions were nothing compared to that.
Hours went by like that and finally sometime after 2:30 am, I fell asleep. I don't even know what time we woke up that next morning. We had a post-op consultation with Dr. Hilgers at 11:00, so we were up and out of the hotel sometime prior to that.
The pain that morning was a little more manageable, or maybe it was just the fact that I was excited to meet with Dr. Hilgers again.
He came in the room and said, "Well, we got answers!" He showed/talked through the video of my hysteroscopy and laparoscopy. He pointed out the polyps (which he also removed) and showed us how the lining of my uterus was very inflamed. He called it "chronic endometritis" and said it was an indicator of infection and made the uterus a very hostile environment for a pregnancy. He had taken uterine cultures, and told us that the cultures only turn up positive for known infections 20% of the time, but he also told us that antibiotics take care of the infection (of known or unknown origin) 70% of the time. He voiced his frustration with the IVF-oriented culture of obstetrics, saying that they (the obstetrics field, NOT PPVI Institute) have been researching IVF improvements since the 60s (i think?) and have scarcely improved their success rates. I said, "we're grateful that you're researching things," to which he responded, "Thank you, but I just wish that someone else would help me out. Even just one other person." He continued on with the video, revealing very enlarged ovaries (consistent with Poly Cystic Ovarian Syndrome - PCOS) and a handful of spots of endometriosis. As the video finished up, he said "now let's devise a plan."
The polyps were what were causing the mid/end-of-cycle spotting. The chronic endometritis for me, causes the tail end brown bleeding (whose presence or absence will let us know if the infection is under control.) It can be treated with antibiotics. He gave Andy & I both a prescription for Biaxin, (reminiscent of the prescription for Doxycycline Dr. Ferris gave Andy & I both, speculating about infection, before our successful pregnancy with Ruby. Interesting.) and said that he wanted me to look into eating an anti-inflammatory diet. He said I had cervical eversion, which was probably causing the continuous mucus, which he treated with cervical ablation (cauterization) at the time of the hysteroscopy. He went through my bloodwork results again, noting that the FSH and LH levels were reversed and my androgen and testosterone levels were off (which were highlighted in the results they sent me in January, but which he didn't really talk about much during our pre-op appointment, sly dog did I really just refer to Dr. Hilgers as a sly dog?) which is indicative of PCOS (as are the enlarged ovaries and the long cycles) and said the treatment for that is an ovarian wedge resection. An ovarian wedge resection is a surgical procedure in which they cut a wedge (a "v" shape) out of the middle of the oval-shaped ovaries, then close the "v" up to make a more circular, normal ovary. He said the procedure should correct the hormone levels. During that procedure (robotic assisted surgery) they would also remove the endometriosis. He summed his findings up by saying that I had three known causes of miscarriage: endometritis, endometriosis, and PCOS, and said that following treatment he would give us an 80% chance of successful pregnancy. EIGHTY PERCENT!!!!!!
Holy answers, batman!
Now he did say that sometimes (for whatever reason, again they're continually researching), the first pregnancy following intervention ends in miscarriage. And he acknowledged that that is a lot to go through after all that we've been through already. But he assured us that many of his patients (even that miscarry after intervention) go on to have successful successive pregnancies.
After asking if we had any questions (we had just a few) he shook our hands and took us to the woman that does his surgery scheduling, Cheryl, saying that it might be 2-3 months before I could get in for surgery. When we sat down however, Cheryl excitedly told us that there was a date at the end of March that they had had trouble filling (probably partly due to the fact that it's during Holy Week) that was available for my surgery if we wanted it. She tentatively penciled us in (until we could check with Andy's work and my mom) for March 26th. She also told us to ease into the anti-inflammatory diet as it is very overwhelming all at once (essentially, no processed grains, lots of fruits and vegetables, lean meats, little dairy.)
When we called my mom after the appointment she immediately said to take the date. Andy's employer didn't have a problem with it either, so we made the appointment for robotic assisted surgery on March 26th with hopes that we will be able to travel home on Good Friday (Cheryl assured me that it would definitely be a "Good Friday" as I would have plenty of suffering to unite with Christ's.)
We were able to travel home from Omaha on Friday, March 1st. The gas pain persisted until Saturday afternoon, when I finally turned the corner and it became less painful. That night, while at my sister's house, I entertained she and Damien (and Andy) with rolling from side to side on the floor so that they could hear the gas bubbling from side to side (again, going to the highest point.) I had no idea I'd be in maternity pants so soon after going to Omaha. lol. I had to wear them (because I was tired of living in yoga pants) until the following Friday because my stomach was still so bloated that I couldn't even zip my regular pants. The two incisions are healing beautifully (not that that really matters much, but they are.) The one at my belly button (the bigger one) looks like just another wrinkle in my belly button and the lower, smaller one looks like an ingrown hair at best. I guess I tell you that just because I am amazed at the finesse of such a skilled surgeon.
Wow. Just wow. Even a month later, I am still coming to terms with this new reality. This reality filled with hope. It's strange after so long of being completely in the dark (as to the cause of our miscarriages) what it feels like to bask in the light of answers. I can hardly describe the love that I feel for Dr. Hilgers. That there is a doctor out there, going so against the grain of the world, to bring healing and hope to women. Not just artificially propping up their bodies to support a pregnancy, but actually getting to the root of the problem and healing them. That can only come from working in harmony with The Creator. Praise God for this man! I am also overcome with gratitude to God for the beauty that has come from such pain. The story God is writing through me never ceases to amaze and surprise me. Now that we have answers, God working through the fallenness of this world to bring about good is so obvious to me. I only wish I could say that my faith in His hand working for good through it all never faltered. Sometimes (on the good days) I could cling to the hope that God was working through it all. But on those dark days, I could only (and barely) cling to Andy who was clinging to God through it all. Praise God for my faithful, holy husband.
So there you have it. Far from the final chapter of our story, but definitely a big moment in it. We are faithfully taking our antibiotics twice a day. (I have nine alarms set on my phone right now: 2 per day for antibiotics, 2 per day for the T3 (has to be taken twelve hours-to the minute- apart, can't eat 2 hours before or one hour after taking, 4 per day for taking my temps and pulses to track for the TSD, and 1 to wake up each morning. ) We are slowly adjusting our diets to align them more with an anti-inflammatory way of eating (pounds and pounds of fruits and vegetables are getting eaten in this house each week.) And we are scheduled to go back to Omaha next week for surgery.
If you would, please keep us in your prayers this coming Holiest of Weeks. Pray for safe travels. Pray for a successful surgery with no complications. Pray for a speedy recovery. Pray that we can make it home for Easter with our children. Even more so, pray for Dr. Hilgers. Pray for God to give strength and encouragement and help to this holy servant. Pray for NaPro Technology to be more widely recognized, studied, and accessible. Pray for the field of obstetrics. Pray for the millions of other couples struggling to live their lives through the pain of infertility and/or miscarriage.
I'll leave you with the lyrics to one of my favorite hymns. Seriously, I get teary singing it every. time.
"Oh God beyond all praising, we worship you today and sing the love amazing that songs cannot repay; for we can only wonder at every gift you send, at blessings without number and mercies without end: we lift our hearts before you and wait upon your word, we honor and adore you, our great and mighty Lord.
Then hear, O gracious Savior, accept the love we bring, that we who know your favor may serve you as our king; (this is the point I always choke up) and whether our tomorrows be filled with good or ill, we'll triumph through our sorrows and rise to bless you still: to marvel at your beauty and glory in your ways, and make a joyful duty our sacrifice of praise."
God bless.
If these topics interest you, you might find the following links helpful:
http://www.popepaulvi.com/
http://www.drhilgers.com/
And and in depth look at the role of infections in infertility/miscarriage by Dr. Attila Toth:
http://www.fertilitysolution.com/Fertile-vs-Infertile-Book.pdf?page_mode=OPEN
