After spending almost all of 2014 going to see various doctors and trying to track down what has been causing me to lose my babies, we came away with a sense of where to go if not the reason we had been looking for.
In April I saw a new OB. He came highly recommended from a friend who had been through two complicated and difficult pregnancies including bed rest and preemie deliveries. He had seen her though, perhaps he would have some advice for me. My hubby and I instantly liked his dry humor and honest approach. He freely admitted he didn't have all the answers. We discussed the various plans for moving forward and he wanted us to consult with our MFM again to make sure he was on board. Ultimately we came up with the plan to try shotgunning ovulation to get a better luteal phase to hopefully have more energy for implantation. To do progesterone after ovulation and through at least 13 weeks. To go on the hydroxychloroquin (Plaquenil) instead of aspirin as suggested by one of the doctors at U of M. And most importantly to have complete pelvic rest, so that the progesterone would be oral, to eliminate any risk of infection. We may also periodically treat me for infections even if there are no visible symptoms. I spent 4 months fighting off an infection and when we were finally green lighted we started the Letrozole (newer drug like Clomid). At my ovulation ultrasound check found that I had two follicles developing on the right, none on the left, and something in the center that shouldn't be there. Probably a polyp. So we were red lighted again. I was scheduled for an SIS (saline infused sonohysterogram) which revealed not one but 2 polyps. It was looking like another D & C was on the horizon. Due to the size of the polyps my new doctor recommended using the "pac man" machine to remove them for more precise treatment and quicker recovery. There was a very low chance of there being any cancer, so I agreed to the procedure. I stressed out over it, but on surgery day everything went smoothly. I spent two days at home and then was back to work. About a week later I received a voicemail that the pathology results were in. Back to stressing out till I could call back the next day. When I finally got the call back from my doctor, after stressing most of the day, his first words were, "Well you don't do anything simple do you." Great. Turns out I have "endometrial hyperplasia mixed simple and complex without atypia." What that means is my low progesterone level allows my uterine lining to overgrow and not shed enough, it does this simply all over, and complexly forming irregularities like polyps. The good news is the "without atypia" which means no cancer! So I of course start Googling... And what I find is that not only is this condition linked to low progesterone/estrogen dominance, but also thyroid issues (really glad I decided not to have surgery), and causes implantation problems due to the thickness of the lining. The good news is the treatment is already part of my plan. Progesterone. So I was once again given the green light. We just completed the first cycle. Hopefully I get pregnant within 3 or I have to have another SIS to make sure that they didn't miss anything or that it hasn't started regrowing. I have no doubt in my mind reading all the symptoms of this condition that I have been dealing with this since my first husband died. This is the cause of all my losses. I now pray that the treatment works, that my lining shrinks, and that I do not end up needing a hysterectomy. Symptoms include: migraine, heavy periods, clots, mid cycle spotting, shortened cycle length, ovarian cysts, painful periods, breast pain, weight gain, infertility, miscarriage, fibroids, thyroid dysfunction, low body temperature, fatigue, acne, dry skin, brittle nails, anxiety, foggy thinking, joint pain, and even allergy symptoms. For more on these conditions, see the links below.
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37. Yesterday I turned 37. Four years ago when my husband and I started this journey toward parenthood I could never have guessed I would end up here. Two years ago I said this is where I didn't want to be. 37, and still trying for my first child...
Here is what has been going on since October: On Thanksgiving we conceived our 5th child. I was over the moon when we found out in early December and truly believed this time we would get our take home baby. 5 is my lucky number. We had everything sorted out after Hope there was no more polyp, no reason this one shouldn't go the distance. I called and got in at my ob a couple days later. Scheduled for an ultrasound two weeks later. Started taking baby aspirin and continued on Progesterone suppositories. We started calling it Turkey as we knew exactly when it was conceived. On Christmas Eve morning I was in the shower getting ready for work and had the thought that how would I know if I was miscarrying because of the Progesterone. I got out of the shower and did a pee test and it was faint, much fainter than it should have been. I tried not to worry and chalked it up to multiple pees throughout the night and morning. I would do another test whenever I got up for my early pee the next day. Cue the 3 am pee the next morning and I couldn't really even see the line. I started freaking out and then noticed the smallest amount of pink on the toilet paper when I wiped. Oh no, not again. I called the on call number for my doctors office and talked to my ob. Decided to go into the hospital lab to have a quant hcg drawn. When we got the results a couple days later it confirmed what I already knew. A level of 4, a negative result, we had lost baby #5 on Christmas Day at 5 weeks 2 days. My mom and I did a lot of research after that, found a few books and learned about a whole lot of other things that might be problems. I went back to see my ob who was basically like bad luck keep trying. I brought up each thing I had researched and was basically told "no proof that has anything to do with it" or "you don't have that and even if you did there isn't a treatment". I did manage to get one blood test for some inherited thrombosis and a referral to an RE. Blood work came back negative. But I had my thyroid levels run with the last pregnancy. Again low TSH (tho not as low as usual) and normal Free T-3 and Free T-4. I scheduled appointments with two REs one local and one at U of M in Ann Arbor. The local doctor wanted to take my eggs and hubbys sperm, make embryos and do pre-genetic diagnosis to make sure the best ones were used and re-implant them... preferably into a surrogate. We did get the Counsyl panel of testing done that day. The U of M RE wanted to run some more tests and help us find out if there was something else going on. Also, wanted me to see an Endocrinologist for my thyroid. The tests at U of M all came back normal. The Counsyl tests revealed that I was a carrier for a disease that didn't matter because hubby wasn't but we BOTH had the same two mutations for two other issues. The first one is hemochromatosis - basically too much iron in your blood. The other is MTHFR. We both are heterozygous for the A1298C mutation (also known as E429A). The MTHFR mutations have to do with processing Folic Acid (the synthetic version of Folate - B9) and the involvement in the methylation cycle. A lot of people with MTHFR mutations have issues with their thyroid too. I had seen MTHFR mentioned in my reading, but didn't know what it was. The Counsyl counselor said that it had to do with Folic Acid and Neural Tube Defects (NTDs) which immediately struck a chord with me as I had just read in my file that my 12 week testing showed that Hope had a 1in 10 chance of an NTD. She didn't have one (that we know of as there was no autopsy or testing on her). Everyone seems to think that if you are heterozygous it doesn't matter, and especially if you are A1298C heterozygous, that there is no problem. As recently as early 2014 that is still being said with this caveat: it doesn't seem to be a problem unless there is something else going on - another mutation or some other problem. I began wondering what the other problem or problems might be. There also seems to be a greater risk if both parents have MTHFR mutations. A recent study shows greater chance for NTD if the baby has the mutation vs. the mother having it. I went to see the Endocrinologist in Ann Arbor. We really liked this doctor and after listening to everything and doing a pretty complete exam, sent me to get an ultrasound of my thyroid and some more blood drawn to retest for some antibodies. The blood test came back negative, but the ultrasound showed nodules in my thyroid. Aha! Finally something concrete. I underwent a thyroid scan and uptake test with two scans 24 hours apart and found out that at least one nodule is producing thyroid hormone and another one is likely doing it too. I have multiple types of nodules some are solid and some fluid. I was given the options of:
I also around this time had another hysteroscopy to see if there was anything wrong with the inside of my uterus. This time I was awake and watched the entire process and saw the inside on a monitor. It was very surreal but the doctor said it was beautiful and perfect and nothing was wrong. So at least that part is in working order! My tests for my FSH, Estradiol and AMH all came back good so I was less worried about the ticking clock. I had a surgical consult about my thyroid and have done a lot of research about my options. I signed up for the Thyroid Summit this spring and watched a lot of the presentations where I discovered the impact of iodine on the entire body. My mom ran with that and in her research came across a woman whose test results were just like mine and who after having half her thyroid removed at 19, went on to have her symptoms recur and found out she was iodine deficient. She worked to become iodine sufficient and her nodules went away, her thyroid began producing again and she has continued to have normal labs for 3 years. So we began researching iodine deficiency and once again it fits my issues. My current theory is that if I am iodine deficient, that caused my nodules in my thyroid, which is causing me to have excess thyroid hormone in my body. Excess thyroid hormone chews through vitamins and minerals in your body. The MTHFR coupled with years of birth control pills and then compounded by taking the wrong supplements in my prenatal vitamins led to my body already being nutritionally challenged. Add the thyroid hormones eating up what little I consumed and I didn't have enough in my body to nourish myself let alone build and nourish a baby. I am currently awaiting getting an iodine loading urine test to find out if I am iodine deficient. If I am, I want to become sufficient and see if that has an impact on my labs. Best case would be a fixed normal functioning thyroid and a baby ready body. If not... surgery. In the meantime, we have begun taking some supplements. We slowly worked our way up to 1mg (1000mcg) a day of Methylfolate, and have been taking Methylcobalamin (active B12), 5-P-5 (active B6), Riboflavin (B2), a whole foods vitamin C, baby aspirin, and probiotics each day. I am also on Ferrous Sulfate (Iron) pills for my anemia. We have noticed some improvements in our energy levels, thicker hair and clearing up of eczema. We are trying to be more active but haven't been back to walking as regularly as I would have hoped. Last month I went mountain bike riding on the trails for the first time in my life. I have gone a few times now and even bought my first bike helmet. I believe the supplements and the probiotics are helping with my weight loss too. I am finally down to my pre baby weight and still loosing at about a pound a week. I have also been tracking using an app on my smartphone which has helped me be more aware of what I am putting in my mouth! We are trying to be more healthy and watching the labels on our foods. There are so many bad filler additives in our foods that it is difficult to eat healthy. MTHFR means watching out for enriched flour in foods as well as that has Folic Acid we don't process efficiently. My mom is even grinding her own grain and making her own bread. So I am 37 and I am kind-of exactly where I didn't want to be... but maybe just a little bit closer to having a child of my own, and definitely on the road to a healthier me. October is National Pregnancy and Infant Loss Awareness Month. And today, October 15th, is the day devoted to recognizing and remembering those precious lives cut short far too soon. So for the last few weeks I've been collecting some information on keepsakes and remembrances for our little ones. I recently ordered some bracelets from the SOBB website. I found it on the Mom of an Angel Facebook page. They offer memorial bracelets (like the Livestrong ones) in Mom, Dad, Grandparent, Aunt, Uncle, Brother, Sister, Cousin, Godparent, and Friend of an Angel. I surprised my hubby with a Dad one and plan to give some as gifts for Christmas to the rest of the family and some friends. They have other items too and I ordered a" Mom of an Angel" vehicle window sticker. The Patchwork Bear takes your keepsake items (clothing, blankets etc.) and transforms them into a stuffed bear to remember your little one with. I am considering sending some things that remind me of Hope to have made into a bear to put in the nursery for a future child. I have nothing that she ever wore and the only thing she touched is a small bracelet. If I do, I will post about it. You can read more about it on the blog where I found it HERE or at their website by clicking the button below. I came across a neat list of things to do in remembrance of your angel. You can read the complete list HERE. The first one is "Mementos." I have several necklaces and some charms on my charm bracelet that remind me of Hope and I feel closer to her when I wear them. My husband and I also plan to do #3 which is to get a tattoo. I am trying to decide if I prefer the inside of my right wrist (always right with me in everything I do) or the top of my foot (walking with me every step of the way). Last Friday night I attended a close friend's bachelorette party. There was a chalkboard on the wall near the bathrooms and another friend had written on it. Later it dawned on me that I could "tag" Hope and leave a little mark of her existence like people do on the beach. It made me smile to leave that there. I think I am going to continue to "tag" her name and take photos and then it is like she is everywhere I have been. (It's #6 on the list above.) When I finish processing Hope's pictures I plan to make a photo book about my time with her. What are some things you have done or are planning to do in memory of your little angel? In other news... I FINALLY broke the weight barrier! I have lost a pound! The day after Hope's due date I had finally stopped gaining and actually lost a few ounces. The following weekend I had lost a full pound. I don't know if it is coincidence, or if there really is something to hormones and my body still thinking it was trying to prep for a baby. Also, had my thyroid retested and it came back the same as always, TSH a little low and T-4 normal.
Really busy trying to get the house in order for our annual Halloween party along with all the crazy busy happenings for weddings and our photography business. I am really excited that we have bamboo floor in the garage waiting to be installed in the nursery! It is going to be another month till we have time to install it. I've been having nightmares that it is the wrong color! I hope everyone is well and if you post your little one's name I will say a special prayer for him/her. To all you mommies of angels, I know what you are going through and would take it from you if I could. Hugs to you all! On August 30th I had my followup for my surgery. Everything is fine. No polyp. All my labs came back normal. Nothing to stop us from moving forward. I also said goodbye to my doctor. She was leaving the practice and moving to another state. I think she will miss us as much as we will miss her. She has been through all of my miscarriages and she delivered Hope. I know all of the doctors at the practice and will be OK seeing them, and trust everyone there to take care of me, but it's sad none-the-less.
I also that day finally called on some insurance questions I had about billing for my first postpartum appointment. Well, I finally heard back on Tuesday and we got everything straightened out, but not before I heard the worst phrase ever. That appointment wasn't a postpartum appointment. It was an appointment for my doctor to discuss my history as a "recurrent aborter." Even typing those words now makes me angry. When I heard them on Tuesday I almost started crying. What a horrible phrase. It makes it sound like I am a hussy who gets pregnant because of not taking precautions and then uses abortions for birth control. I know it is a medical term and diagnosis for someone who has repeated losses. I just think it plain sucks. I want to change this phrase. There is no reason for it to be used, no reason the word "loss" can't replace it. At the very least, no person in the medical profession, whether a nurse, doctor or just in billing, should EVER say it to a woman who has suffered multiple losses. It was a stab in my heart and in my gut. It was a major setback on my road to recovery. It brings back all the guilt I felt for the things I should have or could have done differently with my pregnancy with Hope. It makes me feel like it is my fault. My new mission is that no other woman out there ever be called a "recurrent aborter" ever again. Meanwhile, my weight has continued to creep upwards even as we are exercising and walking. I now weigh 10 lbs more than when I had Hope, almost 4 lbs more than my pre-pregnancy weight. I am trying to stay positive, but it is difficult to keep up with the walking and exercising when I see the scale keep climbing. On the other side, the walking is making a great improvement in my general health and stamina. I am jogging/running more and more and my pace for a mile is now down to around 14 minutes. I still get winded but it is getting better. My husband and I have been trying out different apps on our phone for tracking our walking both at the park and in the woods. I like the features of Runtastic, but it's GPS tracking isn't that accurate, especially in the woods. I've been using MapMyFitness which is more accurate, but doesn't have some of the features I like. Husband tried Enmodo but didn't like that one very well. Have any of you used GPS tracking apps or other fitness tracking devices? What do you like? Last bit... We are due to start trying to conceive again at the end of the month. I'm excited and scared at the same time. I can't wait to be pregnant again and hope and pray that this time it all goes well. At the same time I am terrified that there is some other reason for my losses. I have a hard time believing it was all just bad luck. Also, the timing is a bit strange for me. Hope's due date is approaching. October 4, 2013. I could possibly conceive before her due date. What's more, one of our best friends is getting married on that day and hubby is in the wedding and we are doing the pictures. I don't know whether I welcome the distraction or if I am going to be a total wreck that day. Probably a little of each. Hope to be able to update more often, but we are on overtime as the quarter started and I'm working around 50 hours a week. At the very least, I know I'll be posting around the 4th. <3 Three months ago today my daughter, Hope, was born. Sometimes it seems like a lifetime ago, or that my pregnancy was a dream. Other times it seems it was just yesterday I was waddling around, pregnant and scared for my baby. Time is a weird, wibbly wobbly thing.
My husband is a photographer and had been taking monthly "belly shots" for me. I was planning to do a book, culminating in the birth of our baby. Yesterday I looked at my pregnant pics for the first time. I look so happy in them, even the funny or miserable faced ones, and even though in most of them I felt awful. The last ones we took were around 16 weeks. We were going to do the next ones that day, instead I gave birth. It never occurred to me to have him take pics of my belly at the hospital before she came. We even had the camera with us. It was the only thing we grabbed on the way out the door – just in case. I really wish we had done them sooner. I only have my memories of my belly. Glimpses of myself in the bathroom mirror dressed in my red satin night shirt. I am pretty emotional right now. I have a uterine polyp that we believe has been causing complications regarding my not being able to carry. On Thursday I am having surgery to remove it. A hysteroscopy, d&c, and polypectomy. It's outpatient at the hospital, but I am nervous. I've never had surgery like that before. I've only had my wisdom teeth out with 4 extractions (while I had braces). But that was 20 years ago. The procedure itself isn't supposed to take long, but all told I will probably be at the hospital for around 5 hours. I'm thankful that my doctor, the same one that delivered Hope, is doing the surgery. I just want to get it over with so I can move on and get pregnant again. Hopefully next time with a healthy baby, healthy pregnancy where I don't have to spend months glued to the couch. I'm looking forward to trying to enjoy being pregnant and preparing for a child. Not having to worry and wonder if maybe, just maybe this time I'll have a take home baby at the end of my pregnancy. Maybe, just maybe, we'll make it all the way. Things I'm dealing with right now: 1. Hair loss. I heard from many people that it was supposed to stop or at least slow while pregnant. Mine didn't in the least. I heard afterwards lots of it falls out to make up for it. Well, it took nearly three months, but the last couple weeks I've been shedding like crazy! Guess I'm making up for lost time… 2. Weight gain. A few weeks ago my husband and I walked a 5k with some members of our support group. After that we decided to keep walking. We've been walking around 8 miles a week mostly in the mornings 5-6 days each week. On the days we don't walk we do an exercise routine. We also use our ab-lounge at least 3 days a week. Even with this added exercise I've been gaining weight. I have heard this is pretty common post baby and especially among those who are post baby sans the baby. Is anyone else dealing with these or other issues? Chime in below. I decided today to start a blog. Somewhere to put down my thoughts as I am healing and dealing with the grief of losing my daughter. Mostly for myself but also to help anyone else who needs to share their experience with infant loss.
At work there is a butterfly bush near the front door, right in front of my parking spot. It has been there for more than 5 years. In all that time I don't think I've ever actually seen a butterfly near this bush. Today, leaving work, I got into my car and there was a butterfly at the bush. As I started backing out it started following my car. Chasing me. Then it flew up by the building's roof. It made me smile. The butterfly is Hope's symbol. I think she is happy that I am sharing her story. |
Holly Crews
The mother of five angel babies, and one rainbow baby. I have had four miscarriages, an SCH (sub chorionic hemorrhage), pProm (pre-term premature rupture of membranes), and a pre-term still birth. Archives
October 2022
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