California Clarification

 

Laguna Beach, California. October 15, 2012

I would love to say that our Southern California vacation clarified things for us but I feel just as lost.

It was however peaceful, calming, tranquil and very very necessary. 

It’s been a while since I’ve written and I think I strayed because we’re still so unsure of the future.  

Three weeks ago I had my surgery: Hysteroscopy (HSC); with lysis of intrauterine adhesions. As we traveled into Chicago on a rainy Wednesday I expected to feel nervous or scared but I was completely at ease and relaxed.

 

view outside of FCI Chicago IVF Center. October 3, 2012

view outside of FCI Chicago IVF Center. October 3, 2012

I was more unnerved that my cell had no reception as I waited, bored, in my room hooked up to an IV.  I eavesdropped on my surroundings and heard a few women talking of their journeys, some of the amazing nurses expressing love, concern and passion for their patients and then counting… lots of counting(?). The doctor later explained that they were doing Egg (Oocyte) Retrieval. I couldn’t help but think of each of these girls and contemplate their full stories. It made me sad that they had to go through this but happy that they were taking the steps to move forward. I had to remind myself that they could be doing this for a variety of reasons – Egg Donation for Surrogacy, IVF (In Vitro Fertilization), Egg Freezing (Oocyte Cryopreservation) for cancer… the list goes on and on.

In the end my procedure went well… I was “cleaned out” and given a souvenir to show my before and after (bottom right). The black dot on the bottom 2 photos shows the opening to my Fallopian Tube from inside my Uterus. All the “cloudy” stuff is what shouldn’t be there but I’m told it’s scar tissue from my D&C in March and also blood clots from my many clotting issues. 

The next step is to have another ultrasound in a couple weeks to make sure everything still looks good after this procedure. IF we get the go ahead we can try to conceive with the plan Dr. Kwak-Kim prepared for us. I say if because the last visit was up in the air and she wanted to take it step by step.  

It would be so much easier if we were just told Yes or No.

Infertility comes in so many forms and I hate to admit that it would be nice to have a definitive reason.   You Can or Cannot. An absolute cause or reason that would prevent us from having a child of our own.       I know this sounds like the easy way out and cowardly but this decision is so hard for me. My husband will do whatever I want and our families will support us no matter what we decide and sometimes that makes the choice even harder – like it’s all in my hands, on my shoulders. Which… in a way I guess it always has been… it is my body and I’m the one that will go through everything and that scares me knowing that if something goes wrong it would be my fault. Can I live with that? Some people say it’s in God’s hands but is God going to make the decision for us? No. Maybe I could have said Yes if we had that definitive Yes or No.

All of this amazing support shouldn’t be confusing yet I’m as undecided as ever. I truly want to adopt at some point in our future but my biological clock is ticking (I really hate that phrase). I kind of feel that if we are going to try ourselves it’s now or never? Should I freeze my eggs to give us a chance later and start the adoption process now? There’s always the big… ugly… “what if”. 

What if we decide… not to decide? I know we’d be happy but there would always be something missing. There’s a long list of “what ifs” but we have to decide.

For now I’ll go back to my happy place… and contemplate life some more. 

It rained a couple days before we were here which caused this massive stream from the Laguna Foothills to crash into the sea. It was amazing to watch these 2 entities mixing together.
Aliso Beach, Laguna Beach, California. October 15, 2012

 Update to come in a couple weeks after my next ultrasound.

Thanks to everyone who has been following our journey. I never imagined I’d have 550+ views in such a short time, people reading this from all over the world and new friends that have similar stories. This was originally meant to be for family and friends… and for my own sanity to “let it all out”. Thank you!

: )

 

 

 

Eeeny, Meeny, Miny, Mo

Confused?! No. Not me 🙂

A lot happened since my last post. Dr. Kwak-Kim has quite a plan for us but the catch is that it’s everything but easy. Her 3 page plan is super scary, risky, expensive, overwhelming, time consuming, etc., etc.

recommendations during conception cycle
1. Metanx – once daily
2. Low Carb/Low Sugar diet
3. Vitamin E – once daily
4. Vitamin D – once daily
5. Prenatal Vitamin – once daily
6. Calcium Caltrate with Vitamin D – twice daily
7. Baby Aspirin – once daily
8. Prednisone – once daily 48 hours after ovulation, twice daily after positive pregnancy test
(Fasting blood sugar monitored monthly)
9. Lovenox injections – once daily starting on cycle day 6, twice daily after positive pregnancy test
(Uterine Biophysical Profile 5-7 days after starting Lovenox)
10. Prometrium – twice daily starting 48 hours after ovulation
11. NK Assay, TH1/TH2 cytokine, Chemistry panel TFT on cycle day 2
12. Pregnancy test, Estradiol, Progesterone level 10 days after ovulation

Ok, now the plan during pregnancy
1. Chemistry Panel, APTT, CBC with platelet count every month
2. TSH, Free T4 and Free T3 weekly to monthly as needed
3. Antiphospholipid antibody, anti-DNA/histone antibody, ANA, NK assay, PAI-1 and TH1/TH2 cytokine with positive test then as needed throughout pregnancy
4. B-hCG every 2 days until heartbeat is established by ultrasound
5. Blood Pressure monitoring monthly
6. Ultrasound using grey-scale and Doppler to assess pregnancy development every week starting at 5-6 weeks
7. Triple Test (AFP, B-hCG, unconjugated estriol) at 16 weeks: screens for open neural tube defects and aids in assessing risk of fetal chromosome abnormalities
8. Non Stress Test and Biophysical profile exams weekly starting at 28-30 weeks
9. Thyroid ultrasound to follow up on cyst in 6 months

Long story short: I’d be at the doctor at least weekly starting pre-conception through the entire pregnancy.

After my regular OBGYN broke up with me (“while she respects our doctor/patient relationship she just doesn’t feel comfortable treating me”) I was sent back to Dr. John Rapisarda at Fertility Centers of Illinois. My appointment today was a surgery consult with a sidebar gestational carrier consult. I left just as confused but a bit more educated. We have a lot of research to do and important decisions to make. I don’t have to have surgery if we use a gestational carrier or do adoption but if we want to try ourselves I need to have surgery to remove the crud that’s there and soon… like next week if we want to stay on schedule.

Interesting thought: some states consider using a gestational carrier or surrogate a “Purchase or Sale of an Individual.” Under this law, the sale of a human being is against the law. Some states actually require you to legally adopt your child from the surrogate even with no genetic connection. Luckily, Illinois is surrogate friendly. Too bad insurance companies aren’t. We better start thinking of creative ways to raise $50,000 for surrogacy or $20,000+ for adoption…

I guess our next step is to educate ourselves more about using a surrogate or adoption. I may go ahead with the surgery either way if we can’t make our minds up. I don’t want to be set back another two months if I can help it. After surgery we’d wait another month to have another ultrasound and then start the pre-conception plan if everything looks ok.

We’ll update you soon

Thanks again for all your support, thoughts, prayers, kind words and love!

And the verdict is…

…hung jury…

Good news is… I got a new iPad because my husband feels bad for me 🙂
Bad news is… Things didn’t stay as positive as we were hoping.
I’m still processing everything and honestly I don’t remember all the details. Very long story short my lab results showed 3 other gene mutations on top of MTHFR – all having to do with blood clotting… All not good. There are some concerns with hormone production due to these gene mutations. I have Very poor blood flow to my unusually small uterus combined with irregular uterine structure. Labwork also reported a vitamin D deficiency and a possible thyroid issue. My TSH (Thyroid Stimulating Hormone) was normal but for pregnancy they like the number to be 2.0 or less and I have a 3.3 so the doctor ordered a thyroid ultrasound which showed that I have some pretty good sized nodules on each side (still waiting for results from the radiologist). Dr. Kwak-Kim also has a system of rating your reproductive system and out of 21 points (21 being good) I have a 7.
So on top of my uterus being small, my clotting issues, vitamin deficiency, polycystic ovary syndrome, possible thyroid issue and recurring pregnancy losses she still believes that I can carry a baby. The question is how long and how healthy will both of us be? The doc also ordered another HSG (saline ultrasound) where they make you sign scary forms about surgery and risks and then put strange objects in strange places, fill the uterus with saline and then ultrasound it to see your uterine structure and lining. During the ultrasound I hear “what is that?” and “that’s interesting” and “I’ve never seen that before”. All things that you really want to hear when your mind is already whirling with negativity, doubt and “OMG, I’m going to loose it any second now so hurry up”. Turns out my uterus is harboring some very irregular tissue and a possible calcification of some sort which formed within the last 5 months.
Now we’ve put the brakes on everything while we figure this part out which means surgery again and puts me at my 4th D&C. Once this is done we have to wait at least a month and then go back for another ultrasound before we talk next steps. She already had me start on several new medications however…

Prenatal Vitamins
Baby Aspirin (helps with clotting)
Metanx (vitamin B supplement since my gene mutation prevents activating folic acid into VitB)
Vitamin D
Vitamin E
Antibiotics
Prednisone (steroid to help with hormone production)
Calcium (supplement while on Pred as it can deplete bones of Ca)
Lovenox Injections (heparin – blood thinner)
Crinone (progesterone supplement)
Low Carb diet (helps with polycystic ovary syndrome, PCOS)

I’m not even sure I got all of this right. My mind is running laps 24/7 around what to do. I know we should try again but is all of this worth it without a guarantee? What if something happens to the baby or me? What if I get put on bed rest early on? Are we prepared to have weekly blood draws and ultrasounds every couple weeks? The meds already make me sick… Can I handle that along with possible morning sickness and fatigue? What if I can’t handle this emotionally? Are we spending thousands of dollars on this treatment when we could be saving for surrogacy or adoption? The list goes on and on…

We’ll start with surgery… see what that results in and go from there. That’s all we can do at this point. This leads me towards adoption more and more. As I try to stay positive for myself, my husband, and our families I cannot help the fact that I already feel exhausted and utterly drained. It’s hard to sound upbeat and positive in this post because this is my way of getting it all out… Therapy if you will – I’d owe you thousands of dollars! So I apologize for the frowning and sad faces that I bestow amongst you.

I am again so extremely thankful for our amazing family, supportive friends, cooperative co-workers and a wonderful team of doctors and their staff for holding my hand through it all.

Now I’m going to play with my new iPad and relax. I’ll update you all as soon as I understand more myself 🙂

Good News?

I had another ultrasound on Friday… I couldn’t believe my ears when she said that things were looking better!  It is very rare that I get good news at my appointments.  The cyst that they did not like was gone, my endometrial layer was thinner (but still irregular) and the blood flow to my uterus was much better!  It seems as if the new medications are doing their job.  I still don’t know much else until I meet with the doctor on the 30th to go over my labs and the overall next steps… but for now I smile thinking about the future.

Thanks to my sister-in-law who connected me with an amazing woman – whom I’ve never met before and had no reason to open her heart and lives to us but did anyway.  I received an email about her 2 adopted children and their journeys.  She is amazing and I admire her strength and willingness to share.  She only solidified my choice to adopt a child.  If not now… in the near future.

 “I can honestly say it makes absolutely no difference how or where your kids come from

because you love them exactly the same :)” – T.O.

Number 3

On my 31st birthday, March 4, 2012… We found out we were pregnant for the third time!  I called the doctor right away as instructed… went in for bloodwork the following Monday.  My hCG was at a good level, 2 days later I went in for repeat hCG to be sure my numbers were doubling and to our surprise they were!  We were so surprised by this pregnancy because the doctor told us not to be disappointed if it took at least 6 months considering only one ovary was connected but it happened the first try!  This has got to be The One, right?!  I kept going weekly for bloodwork and all looked great. My first ultrasound at 6 weeks was ok, I got my first ultrasound image of my little nugget.  We told only family knowing that we are high risk but why shouldn’t we get excited? Why shouldn’t I get out the baby books, start thinking of baby names, start dreaming about baby things and thinking about decorating the nursery?  We have every right to be happy, hopeful and excited just like every other pregnant couple.

At 7 weeks I decided that maybe things were going ok and my husband didn’t need to ask off work to come along to my appointment.  I laid back… looked at the monitor and the ultrasound tech was immediately quiet… and I knew.  There was no further growth from the previous week and it seemed as if I had miscarried again.  I didn’t get to speak with a doctor, I had a million questions running through my head and I was so terribly sad that I had failed as a mother again.  They had me return 2 days later for a repeat ultrasound and sure enough there was still no growth.  My heart was broken for the third time.  I was scheduled for my D&C a couple days later.

During these days you battle internally whether you should wait to be 100% sure… maybe there’s a slight chance that they’re wrong? What if I have the D & C and the baby was still alive?  Your family is trying to be supportive and at the same time they ask a billion questions that make you question your questions.  Nothing seems easy but you end up trusting the professionals.

 I checked in to the hospital, the needles fought every vein and it all seemed like it took too long. The doctors and nurses were oogle eyed at my laparoscopic pictures from my previous surgery because they’d never seen it before.  I try to play it cool but really I’m dying to get this over with and in my past. It’s hard enough going 3 days knowing there is a baby inside of you that is no longer thriving.  So I sign the forms and unfortunately I know the process. Overall everyone at the hospital was wonderful and supportive and I’ll never forget the nurse that kissed my forehead and told me not to give up as they wheeled me away.  This one sadly seemed easier than the others.  It may get easier but it hurts just the same.

So now we’ve been referred to another doctor…. which makes doctor number 5. I’m tired and considering that it just was not meant to be but at the same time my life is lacking something. Call it selfish need or wanting to prove myself wrong but we’ll try again (even though last time I said “one more try”).  I call the doctor and it turns out that I have to be “accepted” into her program.  First I need to fill out a 12 page packet and get my records… 87 pages later I turn in my packet and they say they will call to schedule an appointment within 24-48 hours after the doctor reviews my chart if I am accepted… That was Wednesday and by Friday still no call so I was sad all weekend.  Then I got the call Monday!  First appointment is 3 hours long on a 12 hour fast and must drink 32oz of water 1 hour before appointment.  I had asked what possible tests she could do considering I’ve done them all already but it turns out Dr. Joanne Kwak-Kim has formed her own studies and tests (which also means insurance likely will not cover due to them being “experimental”).  So as we wait for this appointment (and my culture results from my D&C) I will revise my long list of questions.

Our Journey…

They say “education is our strongest weapon…”  but the truth is there’s not much information out there for us. There are medical studies, images and old forum posts from long ago… so… here I go. On February 16th, 2009 I went …