Diagnosis

I have a guest post over at No Good Eggs. I am one of Kimberly’s guest bloggers while she is on vacation. My post is about my premature ovarian failure diagnosis. After I wrote the post Kimberly said I left her hanging a bit and asked for more. By the time I sent her “more” she had already left for vacation. So below…is the rest of the story.

If you are one of my readers be sure to head over to No Good Eggs for the beginning of the story.

If you are new and are here from Kimberly’s blog. Welcome!

AFTER MY DIAGNOSIS

My diagnosis came with no explanation, no treatment plan, no advice, nothing. Initially, I did not even really understand what it meant. Being a type-A personality, I am addicted to knowing all the information, uncovering all of the answers. I found myself on a mission to not just understand and treat this newly discovered diagnosis, but to also uncover the mystery of how I had never known about it.

I searched the internet. I ordered books. I referred myself to the only local reproductive endocrinologist. And I began requesting old medical records.

The reproductive endocrinologist confirmed my diagnosis and educated me about the medical risks associated with premature ovarian failure, including other autoimmune issues and osteoporosis. Meanwhile, I poured over my old medical records determined to find an answer. And the answer I found was only more confusing and upsetting.

My medical records actually indicated I had been told I have premature ovarian failure. I felt lost. How could I have been told, yet not know? Did I, still a child, just misunderstand? Did my mother, despite being a registered nurse, also misunderstand? Did the doctor say one thing and chart another? Did my mother know and just keep it a secret from me? Was no one brave enough to tell a teenager she would likely never have children?

These questions followed me for years. Not yet pursuing children, I willed myself to focus on the medical aspect of my condition. It is easier to think about good bone health than broken ovaries.

Finally – over two years later – I confronted my mother with these questions, with my diagnosis. She was shocked, stating she too never knew. Emphasizing what a crazy time in our life that was due to (unrelated) issues going on in our family. This left me with a mix of emotions. Relief that I was not the only one who did not know and that she had not been keeping a secret from me. Frustration that she did not fight harder for answers for me. Abandonment in that once again I had been the child whose issues had been deemed the lesser issues, so much lesser in fact that those issues were unmemorable, forgotten entirely.   

My diagnosis of premature ovarian failure has been a rocky road emotionally. Being “diagnosed” so young and learning of my diagnosis years before we started wanting to conceive, my journey has looked a little different from most who discover their infertility while actively and unsuccessfully trying to conceive. It is however, this journey which led us to embryo adoption and our miracle, Leland.

“You could be pregnant right now….”

So I have this co-worker… Well, let me breakdown the whole office for you first. My office has five attorneys. Me and four male attorneys. I do juvenile court; they all do superior court (adult felonies). We have two secretaries (both female) and an investigator (male). When I started here two years ago there was one less attorney doing superior court work. They added a position back at the first of this year. The person they hired is nice enough, but can really rub people the wrong way – I’ll call him “D”.

So recently D is having a conversation in the hallway with our investigator. I walk by. D looks my way and says “take Lara, she could be pregnant right now.” (D now talking to me) “You really don’t know. You could be pregnant right now.” For a very brief moment I just stare at him. Then the image of my empty uterus on the ultrasound screen from my check-up with the RE in June flashed through my head.

When I finally get my bearings, I reply….”no really. I know I am not pregnant. But if my uterus or my ovaries ever need a cheerleader I know who to call.”

On the upside. He’s transferring to another office in our circuit next month and we’re getting a new hire in his place.

RE Visit

I took the day off work to visit my RE. I was checking back in with him about my hormone regiment. First I was concerned about my triglycerides. My cholesterol has been going down, but my triglycerides have been going up. My research (thanks Dr. Google) found that is could be the prolonged use of oral estrogen. I have been taking oral estrogen - 2mg a day - since just after Leland's birth to help with milk production. My RE said that my research was correct but that switching to estrogen patches could disrupt my milk production and that short-term elevated triglycerides was not a huge deal. So for now I stay on the same estrogen regiment. The best news of the visits - besides not needing an u/s - was that I can stop doing the provera induced bleeds every three months. I hate, hate, hate progesterone. It makes me feel awful and moody. Based on my last visit with my RE I was due for another round in a week, but as long as I am not having breakthrough bleeding I can keep taking the estrogen without the awful progesterone. Yea! The worst news of the visit. I found out that my perinatologist, who is also my OB/GYN is moving to California in September. I am devastated. I have never met a better doctor in my life. He took amazing care or me and Leland through the pregnancy and after. He is brilliant and really an expert on a very complicated pregnancy-related condition I have. A condition that if managed wrong could result in a cranial bleed in my fetus or death. I have sworn that I would never see another OB/GYN EVER no matter how far I moved - I drove nearly 100 miles from work to his office while pregnant with Leland. Is California to far to travel to a doctor while pregnant? On the upside, at least I now have a little notice and can schedule an appointment before he leaves.

Lessons from a Penguin

As I mentioned in my previous post, we spent Mother’s Day at the Tennessee Aquarium. One of our favorite exhibits is the penguin exhibit. I have loved penguins since I was little and Robert loves them too. Really, who doesn’t like penguins?

Our timing was perfect on Sunday. We arrived at the penguin exhibit just as a show / presentation was starting. She pointed out all the mating pairs and that there were four pairs who already had an egg. By August, the remaining pairs could also produce an egg. Then she explained that most of the eggs don’t survive and that in the past five years there have only been two live births of baby penguins at the aquarium. She said they have learned that an egg does not equal a live chick.

I have to assume that most people gave this comment no more than a passing thought. But it just hit so close to home for me. It made me a little sad for the penguins and for the couples I know trying so hard to bring home their baby.

How well we all know that an egg – or even an embryo- does not equal giving birth to a baby.

April ICLW

Hello and welcome form ICLW. You’ll notice that I am in the middle of telling a bit of a saga. Feel free to follow along or just take a look around. I am the proud mama of my 9 month old miracle, Leland, conceived through Embryo Adoption. I suffer from Premature Ovarian Failure and am finding along the way that there is a lot more to this diagnosis than just infertility. You can check out my infertility journey in the sidebar.

I’m also a wife and a lawyer. We are in the process of trying to move to be closer to my work. Right now my husband and I are each communing an hour in opposite directions. So the plan is to buy a house near my work, rent our current house, and pray that Robert finds a job (since he has to quit his current job in order to move close to my job). Right now we have an offer on a house, but it’s a short sale and we are just tied up in all of the red tape.

Trying to move is probably the biggest change going on in my life right now. What is the biggest change taking place in your life right now? 

Provera Sucks

I hate progesterone. Before we were TTC via embryo adoption I was put on a hormone regiment that included Estrogen patches (2 per week) and Provera for the first ten days of the month. I had been to see the experts in Premature Ovarian Failure (POF) at the National Institute of Health and this is the regiment that believe is the most likely to result in one of the 6% miraculous natural pregnancies experienced by those diagnosed with POF. This regiment balanced me out and made me feel good in general, but I would always dread the provera.

(Side Note: If you have POF or know someone how does, I really encourage you to make the trip to the National Institute of Health to participate in their program. It answered a lot of questions for me and was where I first learned about embryo adoption. UPDATE: The National Institute of Health no longer brings patients in for the study, but rather orders tests and communicates remotely with participants and their doctors)

While I am breastfeeding I am not back on my regular hormones and at times this makes me feel a little crazy. I am taking unopposed Estrogen (2mg / day) to support breastmilk production. I tolerate this pretty well but Estrace does make me a little tired. Then, every three months I am taking ten days of Provera to induce a bleed in an effort to so some spring cleaning of my uterine lining. But I hate it.

Progesterone makes me a person I really do not like. I am irritable and just plain grumpy. I really noticed this yesterday. It was like everything anyone did annoyed me. Even Leland was frustrating me. And then I was exerting so much effort to keep the pissy thoughts and feelings to myself and not express them or take them out on anyone.  I feel ill at the world right now and I don’t like it. I have so much to be thankful for and happy about that I really hate feeling so negative.  Hormones suck.  Oh…and then the prize for getting to stop taking the dreaded Provera….heavy bleeding for a week to ten days…yea!

Sorry for my ranting post….I promise to return to my normally happy and positive (progesterone free) self soon!

Getting Shorter?

I went for a physical this week. I am trying a new doctor because even though I like my current doctor it is a nightmare getting an appointment and she is very, very expensive. With my old doctor there could be a 3-6 week wait for a sick appointment and a 3+ month wait for a well appointment. And the last time I went for a sick appointment it cost $170. Most people only pay a co-pay and have no idea or care about the amount the insurance contract authorizes. But we have an HRA, which means the amount authorized by the insurance company affects our bottom line. In contrast to my $170 sick visit, I recently had an appointment with my RE with an ultrasound. That visit was only $180, including the cost of the ultrasound.

So…my physical went mostly well. But I am concerned that I may be shrinking, I have been over 5’2” since high school. Sometimes they measure me at 5’2.25" or 5’2.5", but never less than 5’2”. This week they measured me at 5’1”. Because of my concern they re-measured me at 5’1.5”. Still, I am a little worried. Because of the premature ovarian failure I am concerned about my bone density. But then I wonder if they just can’t measure correctly?

I also had another weird occurrence at my new doctor. After waiting nearly an hour for a blood draw, (BTW – it was after 10:30 AM and I was fasting…having been awake with no food for over 5 hours….did I mention I breastfeed and kind of need to eat?) the nurse practitioner called me back to draw my blood. She looked, and looked, and looked for a vein. Then dug in…and dug some more. Knowing where my vein is from all those wonderful past blood draws I knew she was way off the mark. She then pulled out the needle, and before I could blink RESTUCK me with the now unsterile, dull needle. I screamed a bit because I was so startled and the dull needle really hurt. I’m still not sure if I should say anything to her or the doctor or if I should say with this new office.

I am leaning towards staying with the office, but asking for a lab slip for all future blood work. And then only saying something about what happened if they question why I want a lab slip to take elsewhere. What do you think?

Infertility Resolved

I was reading an article on Ovarian Insufficiency Treatment & Management. (Premature Ovarian Failure is a common name for what is really Primary Ovarian Insufficiency). It went through the basics of making the diagnosis, counseling the patient, and basic treatment options. Here is what it said about resolving / treating the infertility aspect of the condition:

“Currently available options to resolve infertility include change of family building plans”

Oh, that’s what I was missing. I could have saved all the trouble and resolved my infertility problems by simply changing my plans. Nice.

Hungry, Hungry Hippo

So it’s been eleven days since my last post and I am still just so busy. Shouldn’t January be a slow month? I have decided to pick up on my updates with Leland’s eating since it is the biggest development for him right now.

We started solids on December 24^th with sweet potatoes. I wanted to use the Baby Led Weaning method. I read the book and had really high hopes for the method. Leland did not agree. He just lacks the motor skills to get the food to his mouth on his own. This would be okay if he was not so interested in actually eating, but was rather content to mainly explore the food. Since he wants to actually eat it, but can’t, he gets mad. So we ditched Baby Led Weaning and went straight to purees. Though, I have still tried to keep some of the principles of Baby Led Weaning. I have made him and bought him purees that are chunkier and I will mix oatmeal or actual rice in with his food. This helps him practice chewing and moving solids in his mouth, rather than just slurping down the puree. I also let him “help” with the spoon when he tries and I allow him to touch the food even though it makes a mess.   

For the first week, Leland ate once a day at dinner (about 6 PM). We then added in a late lunch (about 2PM). Just last week we added in a late breakfast (about 10 AM). So here is what his daily intake looks like:

5:30 AM – nursing

8:30 AM – 4oz bottle of breast milk

10:00 AM – 3-6oz of food

12:00 PM – nursing + 4oz bottle of breast milk

2:00 PM – 3-6oz of food

3:30 PM - 4oz bottle of breast milk

6:00 PM – 3-4oz of food

6:30 – nursing / bath / nursing

7:30 - asleep

*These are rough times. I am actually still feeding him on demand, but he is pretty consistent most days*

If you’re keeping count, Leland nurses 3-4 times a day for a total of about 2 hours. He takes 12 oz total in the bottles at daycare. And he is eating about 10-16 oz of food a day. Wow! It was like right after New Year’s something clicked and the boy was just hungry. I really can’t believe how much he is eating at times. But I feel good about following his cues. Sometimes he will eat 8 oz in a sitting. Other times he takes 2 bites and is done. He’s never been shy about letting you know that he wants to eat or that he isn’t done eating yet. Because of this, if he is hungry, I feed him. And if he’s not hungry, I don’t encourage him to eat. It seems to be working well and he sure is growing.  

I love that I am still nursing him. It is one of the best parts of my day. One thing that is empowering about nursing is it is something no one else could do. When I was first thinking about going back to work I was panicking that Leland would bond with his daycare teacher(s) more than me. If you do the math he spends about 6 ½ hours of his day with me and about 7 ½ hours of his day at daycare. If his teacher could feed him, rock him, and play with him just as I could, where did that leave me? I know, an irrational fear, but a fear none the less. Nursing gave me something that no one else could do; a way to bond that no one else could bond.

As much as I love nursing, it has been a struggle. I went into nursing with the expectation that it would be hard. I did this so that if it was easy I would be pleasantly surprised and if it was hard, I would be prepared to not give up. I have to honestly say that I was not prepared for how hard it has been. I had this idea that even though my body had failed me in the creating a baby department, it had mostly rocked at the growing a baby thing…so feeding a baby should be no harder than it is for other “normal” women…right?

After producing almost no milk at all (and having to supplement with formula from about two weeks to about four weeks of age), I saw my reproductive endocrinologist (RE). He acted shocked that I was actually breastfeeding and asked if I was having difficulty. He explained that because of my Premature Ovarian Failure my body had almost zero Estrogen and at least some Estrogen is needed to produce milk. He stared me on 1mg of Estrace twice daily. He said I could take it for a few months “unopposed” –meaning without also taking Progesterone. But unopposed estrogen carries risks (cancer, etc.) and I should come back and see him in three months or so. I saw him again on December 28^th. I did a nasty round of Provera to clean out my uterine lining and I have “clearance” to continue the Estrace for another 3 months. But then he really wants me to stop.

I don’t want to stop. I had intentions of breastfeeding exclusively for a year and then continuing breastfeeding maybe even as long as two years (mostly bedtime feedings) or whenever Leland seemed ready to stop. When I think about stopping breastfeeding, the rational part of me mourns the bonding time. The irrational part of me is convinced that stopping is the equivalent of starving my child. Right now I am taking it one day at a time and I will have a serious discussion about the pros and cons with my doctor in March or April (probably April).

As I have mentioned before, I know that God will provide and He will not let Leland go hungry. Sometimes I think that is part of why Leland is such a big fan of solid foods – God made him that way. Some babies transition to food faster and easier, while others shy away from it. I think Leland being a good eater will make the transition away from breastfeeding, whether that’s sooner or later, a little easier. Whatever the outcome, I know God will provide. 

Updates

I have had so many blog posts floating around in my head, but no time to write them. I guess that is how it happens. The busier you are the more you have to write about and the less time you have to write it. So I have decided to just post some bullet points and then expand on them in posts (hopefully) in the near future:

•  Leland is doing great with solids. He loves food. He eats twice a day at 2 PM and 6 PM. He has tried sweet potatoes, applesauce, pears, rice, oatmeal, avocados, and bananas.
• I have my period (thanks to Pro.ver.a) and am bleeding super heavy. This may be TMI, but I am bleeding more now than postpartum. My uterine lining got to 14mm thanks to 4 months of unopposed estrogen. By comparison my lining was LESS than 6mm at the time of the FET. I feel really crappy.
• My Reproductive Endocrinologist (who manages my hormone replacement therapy) wants me to stop breastfeeding. I want to cry every time I think about it. I am only producing milk with the assistance of the aforementioned unopposed estrogen and he thinks I should stop sooner than later. Even with the unopposed estrogen my production is struggling. He said we will discuss it more at my next appointment which should be in March.
•  Leland has his first diaper rash. As diaper rash goes it’s not horrible. But to a concerned mama it’s awful and I am doing everything I can to clear it up as quickly as possible. Any suggestions are welcome.
• My 21 year old, unmarried, sister-in-law is pregnant. I really want to post more about this soon, but as fellow infertiles I am certain you can imagine my state of mind. I am trying to focus on the fact that I know she is terrified and pray for her. Her name is Hannah if you would like to pray for her too.
• We are house hunting. Right now Robert and I both commute an hour to work. With Leland, I just can’t do it anymore. We are looking for a house close to my work and Leland’s daycare – in my hometown where I work.

I hope to post more soon, but I will leave you with a few recent pictures:

Today at lunch at the daycare.

 Happy Eater!

He just recently grew into these PJs. He looks like such a "little boy" here to me.

Good doctors are hard to find...

I have a confession. Until last week, I had not had a Pap Smear in three years. I know, it's crazy. All the exams, scans, tests, and such. Sometimes it seems like a month couldn't go by without putting my feet in stirrups, but I had avoided the Pap Smear. Well, I wasn’t really avoiding the Pap. I was avoiding the OB/GYN.

In May of 2009, I had gone for a visit to my OB/GYN to discuss my hormone replacement therapy (HRT). In March of 2009, I had made the trip to the National Institute of Health (NIH) for their Premature Ovarian Failure (POF) / Primary Ovarian Insufficiency (POI) study. While at the NIH I had been placed on a HRT regiment. The doctor at the NIH - who had been studying POF since before I was even born - believes that his particular HRT regiment is the optimal combination for encouraging spontaneous pregnancy. He really stressed to me that if I did not get a period, I could be pregnant.

So in May of 2009, I followed up with my OB/GYN. I was concerned that the regiment was not quite right because I was not getting my period. Now, the thought of being pregnant had crossed my mind, but I was convinced it was the crazy talking. There had been plenty of other times that my mind had somehow been convinced I could be pregnant when I knew for certain I was not. When I was honest with myself, I knew it was just that my hormones need to be adjusted. Since I hadn’t had my period, my OB/GYN insisted on doing a pregnancy test. The result: POSITIVE. She did a happy dance (literally). I stared blankly at her in disbelief. She made phone calls to other OBs for advice on sustaining this pregnancy. I was still in disbelief. It was a Friday afternoon, so she scheduled a blood test for Monday morning.

I went home. In the foyer of our home, still dazed, I told my husband I was pregnant. He hugged me. All weekend, we had our little secret. We shared knowing looks. We made plans and just let the unbelievable news soak in. I consulted Dr. Goggle about the possibility of a false positive. Dr. Goggle said a false positive at the doctor’s office was practically impossible and I let myself start enjoying the wonderful news.

Monday, I had my blood test. Tuesday, I spoke with my OB/GYN office and they scheduled me for my first OB appointment on Thursday morning. Thursday morning, I sat in the OB/GYN office for the first time with all those big bellies, finally feeling like I belonged. But when I saw my doctor, she told be my blood test was NEGATIVE. She was sorry that she hadn’t had a chance to call me and that I that I had to make a trip into the office for nothing. I was ushered out the back door of the office in tears. The nurse who walked me out gave me a hug and told me to call her if I needed anything. When I called the next week for a copy of the record to take to my reproductive endocrinologist (RE), she acted like she did not know who I was or what lab record I was talking about.

I cried all summer. And my husband took the news even worse than me. My RE said that high LH levels (cause by the POF) can mimic HCG and can produce a false positive on a urine pregnancy test. So it was really was a false positive and not an early miscarriage. Still, it felt like a miscarriage. Sure, we hadn’t seen a heartbeat or felt a kick, but we’d been told  by a medical professional whom we trusted that I was pregnant. We’d begun to let ourselves dream. Making things so much harder was that was the summer that many, many of our friends became pregnant. One weekend, I found out three friends were pregnant.

I vowed to never go back to that OB/GYN. And honestly, I was scared to go see any other OB/GYN. I rationalized that Pap Semars weren’t really that important. I was not going to risk being misdiagnosed pregnant ever again. But last week, I did it. I had a Pap Smear. My high risk OB, whom I love, love, love and trust more that any doctor I have ever seen told me that I can stay on as his patient for GYN care. He will do my yearly Pap and address any GYN problems that fall outside the realm of my RE. I can finally relax, knowing that I have a competent doctor who understands all of my medical conditions. Finding a good doctor can be hard and it is such a blessing when you do.