Baby steps

Little by little, this baby making process is moving along....

We apparently misunderstood the treatment plan we were given by the RI. It wasn't IVIG or Humira. What they meant was use Humira for a month, test to see how it's working and if it is, then do one IVIG. The other option they gave us was to do one IVIG then a week or two later, do another IVIG. We had another consulting phone call via facetime with Karen Pace and she explained everything. After speaking with her for about an hour, we decided on a compromise of Prednisone and one IVIG. I contacted the AEB Center and they agreed that it was ok to do that! Yay!

So the next step is to contact companies who administer IVIG through a home health care nurse. Because I am a teacher and cannot spend my entire day on my cell phone, my DH called them for me.  (I just love him!) So he found a place in Knoxville that is contracted with my insurance. I left a message this afternoon with the AEB Center to let them know which one we are going to try to use. Hopefully I will hear from them tomorrow and they will send my orders so we can figure out how much this is going to cost us. Ugh. If insurance covers any of this I would be shocked. But after all we have spent this far it almost seemed crazy to go small at this point.

I did start on my 10mg of Prednisone tonight, they called in my Lovenox which I will begin on CD6 of my next cycle. I'm on CD 16 of my current cycle so I've still got a little time to get this all figured out. This is one time I'm thankful for long cycles.  If we can get these crazy infusions set up we will be good to go! It's starting to get a little exciting!!!!!:)

One step closer

I didn't post about our second LIT trip to Mexico because it was basically the same as before. Everything except for we didn't eat at the Mexican restaurant because it's gross and we received a triple dose instead of just the double. Our friends went back with us that were there the first time and I received a singe dose of her husband while she had a single dose of Brad! There was also one other couple there for their 3rd round. Ugh! We were really hoping we didn't need a third trip.

Luckily it has been long enough after the second round to get my blood drawn and the results are back! My LAD went from 5.2 to 73.7!!!!! The AEB Center likes for this number to be 50 so I did great on this one. This is what the Mexico trip was for so it definitely worked. So glad we went and did the triple dose that second round.

My t-reg was also good at 2.3. They like to see 0.7 or greater on this one so I 'm good there too. As of right now, we don't need any more LIT treatments for now. Yay!

Now for the bad news. LIT doesn't usually work for your elevated NK cells or cytokines so those are still too high. It brought them down a little bit but they are still too high so the fix is either IVIG or Humira. I have emailed our consultant, Karen Pace, with Conceivable Solutions to get her opinion on the two choices. IVIG is of course the clear choice if it were free but it's outrageously expensive so we would rather not do that unless we have to. Not only is it expensive but you must be hooked up to an IV for 4 to 5 hours for each infusion. It would be way easier to just take shots of Humira but we don't know if that is enough to combat my baby killing body! I have an online friend whose NK and cytokine levels are comparable to mine and she just took Predinosone prior to pregnancy and throughout the entire pregnancy. She now has a healthy son who is 8 weeks old.

So now we have to decide which path to take. According to my cycle app on my phone, we have around 25 days to figure out what we are doing. IVIG expensive infusions, Humira to suppress my immune system or Prednisone to combat the inflammation. We're getting closer to our baby!!!!!

First LIT trip to Mexico for a little bambino!

Warning! This post is extremely long because I am not only writing to inform you guys but also to document the experience for my future child. Did you notice that hint of hope and faith? ;)

We're back from south of the border! Let me just say that whether or not any of this will work, it was quite an experience...

We flew out on Friday to Phoenix, rented a car and stopped off at a new outlet mall. It's so hot there that they have those fans that push out mist everywhere. Since I couldn't take any of my medication for asthma, the heat really got to me! Here I am beside a huge cactus next to my favorite store.

After a little shopping we went to our usual fertility treatment restaurant, The Cheesecake Factory, in Tucson. Next we drove to Nogales, Arizona to stay close to the border at the Candlewood Suites. We have been working with a woman named Jossie from the clinic in Mexico (She's the only person there who speaks English) and she told us if we stayed here they would come pick us up and drive us to the clinic. We were nervous about staying so close but the hotel was super nice!

Even though the bed was comfortable, I didn't sleep at all. I was wide awake with my thoughts wondering what they were going to do to us tomorrow. Would we be late and they would leave without us or worse, would they not show up at all? Is this clinic going to be clean enough? Eventually I slept but when I woke up I was driving Brad crazy that we would be late. Fortunately we were a few minutes early; Unfortunately the driver, Cesar, was not. We waited an hour and half and finally we received a call from Jossie stating that he was running behind with the rain and waiting to cross the border. Luckily we met another couple, Amy and Ken, who were staying there and going with us to do their first LIT! Amy spotted a brown minivan next door at the Holiday Inn so we knew it was Cesar. I had seen this van on blogs when researching this whole process!

Waiting at the hotel

We go to McDonald's right beside the border to pick up one more couple. This was their second round and the husband spoke some Spanish so they were a big help. The wife reassured us that everything went fine and there was nothing to worry about. They gave us a lot of comfort in an uncomfortable situation.

When we crossed into Mexico, no one cared. There was no one checking to see if anyone belonged there. You just drive right in. What we saw was pretty scary. Rundown houses piled up on a hill, stores with bars and gates. I know we have places like this in America somewhere but not where I live. I guess I'm sheltered. After seeing this, I was a little worried about the clinic itself. When we arrived at the clinic and walked in, it looked nice, clean and like something you would see here. Whew!!!

The fence on the border

They took the husbands in the back room one at a time to draw 10 viles of blood each. It's kinda weird laying down completely to get blood drawn from someone who can't speak to you.

Since it was now waaaayyyy past our lunchtime and the boys weren't allowed to eat anything before the blood draw, Cesar took us to a nearby Mexican restaurant to eat. Cool atmosphere, gross food but then again I eat like a 6-year-old so I'm very picky. We were even entertained by a genuine Mariachi band thanks to Amy.

They brought out the English menu. It didn't help much when you don't know what anything is anyway. 

 Cesar picked us back up after lunch and we rode back to the clinic to wait for our injections of our husband's white blood cell serum. (Weird.) While waiting I went to the bathroom but there wasn't any toilet paper. I warned the girls about it and the wife who had done this already told me you have to ask for the toilet paper. They keep it behind the front desk. What? So anyway I did and afterward I found out that the septic system or whatever they have instead doesn't allow for you to put anything in the toilet, even toilet paper. Oops.

Notice how nice the hallway is. If you were scared about the clinic, don't be!

One by one, they took us back for injections. We were warned by the couple who had already been there that they give them to you right on the doctor's desk. A double dose means you get four injections in each forearm. It felt like long bee stings. It hurt but it wasn't as bad as I thought it would be.

After we all got injected, Cesar took us back to the homeland! We sat in the line of cars to wait our turn to get checked out to come back over and watched as countless Mexicans tried to sell junk on the street in between cars. Food, jewelry and one guy even had a microphone. Not sure what was going on there. None of us bought anything.

We dropped our veteran couple off at the McDonald's and arrived back at the Candlewood. We said our goodbyes to our new friends and started our drive back to Phoenix to spend the night. Here are a few pics of the views we were enjoying. Breathtaking!

We went to the Talking Stick Casino where Brad won $70 on a 2 cent slot machine! We don't really gamble so I put $10 in. When I won $7 I was ready to quit. This describes our personalities so well. I am so conservative while Brad takes risks that scare me. SO glad we were both willing to take this risk to do LIT for the chance at a baby. Let's just hope our bet pays off. 

This is a pic of my injection spots Monday night. I am red, itchy and puffy. Yay!!!!! It makes me feel like it's working or something. ;)

Infertility won today

Feeling a little discouraged after our appointment. Although he did say he would work with us on doing IUIs after LIT, he certainly didn't agree with the diagnosis but that wasn't what upset me. When we explained our 3 IVF cycles, he is quite certain that our problem is embryo quality. Even though Cincinnati never told us our quality was bad, it was concerning to the doctor we spoke with today that out of 3 cycles we only had 1 frozen embryo. He said out of that many embryos we should of had more make it to freeze. The saddest part about this is I believe that too. It always bothered me that we never had any to freeze but it never seemed to bother the group in Cincinnati. Now I'm not so sure we're ever gonna have our own genetic child. Infertility won today. 

Back to an old friend!

Please say a prayer for us tomorrow. We've got a doctor's appointment with our RE in Knoxville (one we used before moving to IVF) to discuss whether or not he will be on board with these immune treatments once I get pregnant again. If not, we may have to go to a brand new RE in Atlanta (who states on their website that they are proponents in reproductive immunology) and we really don't want to switch doctors again. The Cincinnati group was great but there is no reason to go there since we will no longer be using IVF. They also weren't thrilled about immunology. 

Crossing the Border!

We finally have a plan! We had our phone consultation with one of the doctors at the Alan Beer Center in CA on June 12th. This is basically what is wrong with us:

A crossmatch was done to determine how well I responded to Brad. My result on this test was 0.52 and they like to see 50 or above for good implantation and a healthy pregnancy. I am not producing the necessary antibodies needed to protect the baby from miscarriage or stimulate the placenta.  The solution (hopefully) to this issue is lymphocyte immunization therapy (LIT). I have explained this before but I will again just in case you missed it the last time.

LIT is when they draw blood from your husband and the lymphocytes are extracted and made into a serum. Then the serum is injected into the wife's forearm just under the skin. After 3-4 weeks the process is repeated. It's not that expensive and seems to raise pregnancy rates when this DNA thing is a problem. Unfortunately it's not available in the United States. In January 2002, the FDA suspended the use of LIT in the US until they can establish its effectiveness. The only way to get this treatment is to go out of the country and Mexico is the closest place. The reproductive immunologist in CA used to perform LIT before it was suspended by the FDA with good results. He even said since the suspension their pregnancy rates have gone down because not everyone is willing to travel to Mexico to get this done. We are willing!!!!So now we have passports and we are just waiting on our infectious disease panel results to book our first trip to Mexico. Yes, we are crazy people. We just want a baby, our own genetic baby if possible. 

I have a few other issues but they aren't as severe as the one above. My antiphospholipid antibodies test(APA) test was positive, autoantibody to nuclear components test was borderline positive. My T regulatory cell assay demonstrated low T regulatory cell level which are implicated in miscarriage and implantation failure. I had elevated NK killing capacity and had three thrombophilia positives: MTHFR A Heterozygous, PAI-1 homozygous, Factor XIII heterozygous. I already knew about my blood clotting factors but I didn't start my Lovenox injections early enough during my last pregnancy. 

So here's the plan: 
Take the first trip to Mexico as soon as we receive infectious disease results to do the first LIT injection. 
3-4 weeks later, return to Mexico for the subsequent injection. 
3-4 weeks later, recheck LAD (the test that I scored a 0.52 on) and NK cells. 
Take folic acid for MTHFR, baby aspirin, vitamins D and E, prenatal vitamins.
If cleared for a conception cycle, intralipid infusions for elevated NK cells if needed. 
If intralipids are still elevated, begin IVIg infusions. 
Begin Lovenox injections on cycle day 6.
Take progesterone suppositories. 
*I have an appointment this month with a local RE to see if he is on board with these treatments. If not, we will have to contact someone else to work with us on these issues before we can start with the plan. Not everyone is a believer in reproductive immunology yet. 

If we get pregnant, we will have a CBC with platelet count every month while on Lovenox, retest APA, retest ANA, retest TH1:TH2 intracellular cytokine assay and retest our T regulatory cell assay. If T regulatory cell assay is abnormal, they will continue to test through the first trimester. NK assay testing will be repeated every 3 weeks starting with positive pregnancy testing, then monthly after the first trimester. A Beta should be drawn every 3 days until a heartbeat is established. Progesterone level should be preformed at the time of a positive pregnancy test and weekly through first trimester. Test TSH and Free T4 (thyroid tests since I have a history of thyroiditis) with a positive pregnancy test and then as needed. 

It has taken us a while to get all these answers but needless to say, everyone is going to keep a close watch on me before and after a pregnancy. That is such a comforting feeling. I loved reading the part about heartbeats and first trimesters. I hope and pray we get to those stages and beyond. We covet your prayers as we begin our next steps on this journey we call infertility. I pray for you girls daily. 

Mother's Day

How do you deal with this dreaded holiday as an infertile? My husband and I decided years ago that we would not attend church on Mother's Day or Father's Day. Here's a sample of what we probably missed this morning: "Let's have all the mothers stand up for a flower. How about the mother with the most children. The oldest mother. The youngest mother. The mother with the youngest child. The pregnant mother.....blah, blah, blah" Funny how they never mention the mothers who lost their children in the womb or soon after birth or mothers who haven't ever conceived but are mothers at heart. Once again infertility and pregnancy loss remains taboo.

Mother's Day is always filled with baby dedications at church so that's an added bonus! Yuck. I think it's beautiful that families are standing up stating they are dedicating their babies to the Lord, to train them up in the way they should go. I just don't want to watch it. So instead we stay home and watch golf, The Players Championship. Surely you're safe watching golf. Nope.  Every 5 minutes they are showing mothers with their children (mostly babies) and plastering Happy Mother's Day all over the screen. I guess the only way to get away from it all would be to sit in your living room in silence but even that wouldn't work. The yearning of motherhood is always there and on Mother's Day it's magnified times 100.

But then I start to feel guilty about this day. I have a mother, a wonderful mother. There will be a day that she will be gone and I will regret throwing my pity party about not being a mother myself. It's very hard to navigate my feelings. I am so thankful for my mother. She is the reason I long to be one myself. She is loving, selfless and emulates every quality that I want for myself as a mother. I will go visit her in a couple of hours and instead of thinking of herself as she should on this day, she will think of me and how hard this day always is. And that is the reason I want to be a mother. To put my children ahead of myself the way my mother does. To know what it feels like to have a mother's love for her child.

Maybe next year I'll have a Happy Mother's Day.....I've been saying that for 6 years now.