Phone Consult Results and Dr. Hilger's Latest Research

What is it about talking to Dr. Hilgers on the phone that has my heart racing and feeling slightly ill? I think its the combo of talking to such an amazing person and having a short period of time to be coherent about a topic that is not only personal, but very sensitive in nature. If you have two seconds, skip to the last line and get my summary of the phone consult (or paragraphs six and seven if you just want the latest research).

I went into this call differently than most appointments. I didn't think it would be life changing or anything. I just thought it was likely infection and what are we going to do about it? I didn't talk a lot for me. I listened. I didn't have a ton of preconceived ideas. It was relatively simple and straight forward.

I forgot, at first, if I call him or vice versa. I relistened to my voicemail reminder and got no additional information so I called and that was the right thing to do. I offered to recap everything and he said no need as he just went over my chart. I still weaved in the details I thought were important in the recap. What can I say? I am still me-a bit obnoxious that way.

As far as infection, we haven't retried taking the 21 days of Biaxin-we just did 10 days. We haven't taken 14 of Cipro as preventative and let the whole course run before ttc. We haven't gone to NY for full treatment with Dr. Toth (I think he forgot this-not many on our track haven't-we have been to NY for testing, but we were pregnant at the time). I haven't even mustered up the self-discipline to start the antiinflammatory diet (Godiva truffles for lunch). So I guess I feel we still have options, thought I am not convinced we would do any of them. I just don't know. I am not confused. I just have peace. We don't have all the info to decide. We don't have Dr. Hilger's recommendation.

Dr. Hilger's mentioned the infection in that we don't know what we are dealing with. It could be the infection from before is gone and this is something new. It's certainly seems as if its been treated enough. But then again some things are never really gone, just suppressed  So that got me thinking (after the call), what did my cultures from the June surgery show? That is how we learned I had the mycoplasma. I think they came back with nothing. But I want to double check in case this slipped through the cracks. Never hurts. [update-the nurse called before I finished this post-yup, all negatives for cultures this time with PPVI despite crazy inflammation and TEBB-I don't think its gone, but it def can mutate or be whatever so we won't know for sure what we have unless we go to NY] Even if positive, there can be false negatives, or they could not have tested for the infection I have. Hilgers already told me once 20% or so test positive for infection, but 60% respond well to antibiotics so things are missed. Another option, to miss less, would be to go to New York. Instead of for treatment, we could just get tested  and see what we are dealing with. There is no lab in the U.S. as thorough as Dr. Toth's for testing for bugs. Then we could make an informed decision about whether to treat. I want to be healthy and infection free, but its costly so going to NY isn't a total given. That's a lot of money that could be put toward adoption...so we will see. Not enough info to make any decisions.

So Dr. Hilgers wasn't hung up on the infection idea. I think it was an obvious option for what happened and he knew that. But he wanted to explore something else on this call. The idea that we've had four losses and two healthy children made him want to at least rule out genetic testing. He will be having a nurse contact me as to the details, soon since I am on CD 7. [update-by soon he meant soon. The nurse called me during the writing of this post. Basically she said my local ob could order the test and run it wherever since they don't run it locally.] He wants this done on dh and I asap so results might be back by my next cycle review. Its a blood draw that can be done here or mailed to Omaha, but they don't do it there so that may not be necessary. I will see what the nurse says. We have never had this testing done. Its karyotypes both of us to see about genetic abnormalities. The irony of this is this is something typical REs do run, after three miscarriages when you are referred to them, but of course our other stuff would never have been caught or treated with traditional methods. Dr. Hilgers did warn me its expensive, but I have already had my deductible met and dh is well on his way to his so I don't think our 20% coinsurance will be insane. But it does make sense why it is run initially with everything else.

Now, the first thing I thought of was if that is the case, what is a Catholic to do? Any non Hilgers RE would happily do IVF with ICSI under these circumstances to ensure perfect chromosomes. But the brilliant Dr. H has something he has been working on and he is 2 for 2 in terms of successful treatment. (I told him, leave it to me to be in on a research study with that small of a sample size. On our last conference call, he told me about the infection and how he had 3 patients treated so far). If we did have a genetic problem, he is theorizing that the cells around the egg are also abnormal (as seen by ultrasound-only with his ultrasonographers really-no one else in the country is looking for this). Couples that have these problems avoid when the cells are abnormal and try when they are normal. Two for two-trying on normal cell cycles despite challenging genetics and had healthy babies. God bless him. He really is conquering the culture of death in such a tangible way. Incredible. He just presented the results to a conference in NY. So glad he is getting the word out. And for us, going to Omaha for an ultrasound isn't as impossible as it might be for others. Add to this the fact that we have a history of getting pregnant within three cycles, so I am not freaking out about any of this. We will deal with what comes. We will make decisions when we have hard facts.

The other point of concern that I mentioned on the call that was a red flag? I bled five weeks after my miscarriage. five long weeks. I was on top of it with my local ob, almost annoying. But go figure, that wasn't enough.(and God love him, Dr. Snider is napro trained!)  They thought if my hcg went down, I was fine. Dr. Hilgers says there can still be tissue, even if not "active" tissue. Bleeding five weeks is never normal and, though he wouldn't have done an automatic D&C every time to determine I am clean, he would have stepped in an done one at two weeks. Tuck that in the file as info I hope to never need again, but good to know. I asked if I should do a D&C now and he said wait for now sometimes getting the hormones right will be basically a medical D&C. But basically a piece of tissue in there "festering" (my word) is never a good thing. Sigh.

So the call was short and simple. Twenty minutes. We are going to rule out genetics. We will deal with that if I have it. If not, we will talk more about infection and possible next steps.

Not Much To Tell Yet

Wow, am I a loser or what? Sorry its been so long. I don't have a whole lot to share, but wanted to document a few things. First of all AF came on 4/13/13. This was my first period since my loss in February. I didn't take any meds, not even my usual ones except thyroid, and so I likely had a short luteal phase. I say likely because I didn't chart. I do know I didn't have any TEBB. Today is CD1 again. I have a phone consult scheduled for May 16th, so next Thursday, to talk to Dr. Hilgers about what went wrong and what he things about the future. We are reserving making any decisions until we have all the facts. I have been very at peace with not doing anything for now, and even at peace to not pursue biological children if that is the direction we feel called. We are just waiting for now and focusing on other things. Like our master bathroom remodel, which is taking so much longer than we intended. And our sweet children, who keep us plenty busy. And my job, which is filling up my time more and is more rewarding. So life is good. And I will post again after the phone consult.

I've seen a lot of good comments and thoughts out there regarding Mother's Day from blogs and facebook, etc. I want you all to know I continue to pray for everyone still waiting. This is something I came across through one of my listserves. It is about all forms of loss and grieving related to motherhood and it looks good. I hope it is helpful to others.
http://www.amazon.com/Joy-Interrupted-Anthology-Motherhood-Loss/dp/0985235608/ref=reg_hu-rd_add_1_dp

I would also like to ask for prayers for my friend KB. She is pregnant again after two losses and her dh being diagnosed with a host of male issues. They seem to have been situational and have turned around, thankfully. She is 10 1/2 weeks along and not a Napro patient. Her doctor has taken her off all forms of progesterone because her body should be naturally producing it by now. She and I talked and she will be approaching him about at least monitoring her levels.

Another friend has severe pain with periods. I sent her to the doctor, my Napro primary care, where she was told to take Aleve. Sigh. WTH?!

My dad is doing well (back surgery), my little sister is doing better (lost her fiancee), but I have another sister doing poorly (related to drugs, adultery, and her children being caught in the middle). I would also like to ask prayers for my mother. Her heart condition has been diagnosed and treated, but the GI symptoms remain. They are testing her for a ton of things, mostly tumors in the colon/adrenals, etc so please pray they find answers and it is treatable.

Lots of thoughts in my brain right now about ttc when there are so many children waiting for homes that are already here, two of which could be my 10 yr old niece and 12 yr old nephew if things don't turn around fast.  For now, I keep all of them in mind, but I don't dwell on them. No decisions are being made at this point, just possibilities being explored.

Happy Easter! Photo of the kids

I know I have not really been posting a lot regarding my beautiful children. I do not ever intend for this blog to be a mother's blog, however a recent email reminded me pictures of my beautiful babes bring hope. I appreciate that comment and reminder..

So on that note, Happy Easter, blog family! And a little about my children below, if you are interested in knowing more about their unique personalities.

Charlie is my four year old. My beautiful, sensitive animal lover. He often plays dogs at preschool with the girls (who are the princess dog owners, lol). He is also a lover of sports, though I think in the end he will do more watching than playing. We shall see. He is signed up to start his first sport, t-ball, this May. Charlie has a sweet tooth like his mother. He has a love for Christ that is something I could learn from. He is mesmerized by anything faith related and his memory and imagination just make it that much more real for him. Charlie loves attention and is the poster child for it not mattering if that attention is positive or negative. He is a clear student of how his behavior affects others and loves to see the results. Lately we have had to label and explain about bragging and jealousy as he loves to boast a new treat to anyone from his brother to a random stranger and it is clear if they want it than it is of that much more value. He also wants anything others see value in, like when little brother wants to push the garage button than that is something to fight over :) Charlie loves to entertain others and we spend time teaching exactly what is an appropriate funny remark to a passerby and what is rude. Life is always an adventure over here! He is way too smart for his own good, he is gifted at vocabulary, letters, imagination, and math. He loves being an older brother. He shines in the role is mostly a very kind, sharing, teaching sort of brother that is happy to involve Anthony in everything. Charlie also is very rule driven, meaning he knows all the rules, doesn't always choose to follow them, but is the first to notice if others don't. :) He is very indignant. He knows he has inherent rights and he will be darned if anyone, even adults and parents, infringes on those. Needless to say, he holds his own at preschool. He is a definite first child. He is a leader. He is my affectionate snuggler. It is so fun that he looks like me and my dad. I am so glad he has a little brother!

Anthony James is our tornado! Though he has calmed down quite a bit from his pre two year old days, he still gives us a run for our money teaching us Charlie being so easy was more about his personality than about how great his parents were :). AJ is a doer, very physical and very gifted athletically. He has always been in the 90% in height and could do everything early between his height and his older brother's example. He is sweet as punch, even at 2 as he is becoming his own person and wanting to make his own choices. He is still easily managed and redirected. He is the spitting image of his daddy (and actually his father too, which is a gift since he has been gone for over 20 yrs) and loves sports just like his daddy. He is doing a ton of pretend play right now (putting a blanket on him, saying its his coat, asking me to zip it-love!) and he imitates his brother on everything. Mostly that makes them best friends, as Charlie has a shadow, but sometimes it doesn't (basically when Charlie gets into an argument with himself). AJ loves sports. He is usually too busy to be a cuddler, but we have our moments (reading books, etc). I find him asking to be held only for a lift to the food cabinet to scope out a snack and the like. I wouldn't say AJ is cautious by nature, but definitely at this age I don't see him dive into new things like he used to. Mostly he is leary of anything new tactically, if that makes sense (shaving cream art, bunnies at the photo shoot etc). But he warms up with time. This picture is the closest that AJ got to enjoying the bunnies. My favorite pic of him involves one finger on the bunny, lol! AJ is as easy going as it gets in a lot of ways, you could easily dump a bucket of water on his head and he just laughs and laughs (wait, I actually do this with every bath). AJ has learned to hold his own with the best, so while he does not mind most things, if you are doing something he doesn't like, don't expect this one to bop you like other kids. No, he knows how to bring you to your knees in a matter of minutes, usually involving finger nails. I am a little worried about preschool in the fall :) Maybe that is a second child thing-survival skill?

I hope your family is enjoying the Easter season and the promise that spring is slowly but surely becoming a reality in this KS suburb!