Sunday, January 31, 2010

A Miracle in 2010!?!

There has been a flurry of exciting news in the IF blogosphere recently and I am humbled to be able to add my own. The Friday before Thanksgiving I found out that I was pregnant! I had just gotten back in town from a business trip. I had expected to start my new cycle while on the trip. I filled up on all my medications for the month and packed my bag with feminine products, heating patches, and ibuprofen. The night I returned home, I pulled out my chart and realized I was already 20 DPO! Whoa, what infertile woman goes 20 DPO without noticing it (one who doesn't take her chart with her on business trips)! The next morning I went into the bathroom, thinking I had an extra test in the closet – nope, just a full pack of ovulation predictors. I went to the store, telling myself I couldn't be pregnant – a pregnant woman couldn't hold her first morning urine for long enough to go to the grocery store to pick up a test. But the test immediately came back positive!

So, here is the briefing of the info I know all of you will be most interested in, and if you want to read the full story of how I got through the first trimester, and how Dr. Kwak-Kim in Chicago helped me, you can read the longer post below.

We had started the month thinking it would be a break cycle. I had just had my surgery for Ashermans at the end of September and we thought we would wait one month to recover post-surgery and then hit things full force in November. Obviously that didn't happen. Dr. Stegman had ordered an ovulation ultrasound series. I wanted to make sure that my uterine lining was thick enough for a baby to implant (thin linings can be a symptom of Ashermans). It also meant I could check the ultrasound series off of my list of IF tests, as this was one thing that we hadn't done yet since we knew, with three conceptions, that I ovulate at least some months. During the ultrasound, everything looked great – my lining was measuring nice and thick, and I had several follicles growing. So we threw caution to the wind and gave it one shot…and it worked!

In the past, I have always gone a year-plus between pregnancies. This was the equivalent of getting pregnant two months in a row, though spaced out over a 5-month period due to pregnancy/miscarriage/post-miscarriage complications. I totally credit Dr. S for clearing my endo – I have gotten pregnant quickly two times since my laparoscopy in January. I credit Dr. KK for helping prevent a miscarriage this go round. It has been a crazy three+ months.

What I was doing:

  1. Eating really healthy
  2. Exercising a lot – increasing my variety and intensity
  3. Taking Folgard for the first time (because of my MTHFR blood clotting disorder)
  4. Baby Aspirin
  5. Multi-vitamin
  6. Flax Oil

What I wasn't doing:

  1. Femara
  2. Mucinex
  3. B6
  4. Amoxicillin
  5. Progesterone

As you can tell by this belated announcement, it has taken me awhile to get used to the idea that I might actually carry to term. I am finally starting to pull out pregnancy books that have long been banished to the basement and I am trying to stop saying "if we have a baby in July." It is hard to transition between the IF/miscarriage world into the pregnant world as other pregnant bloggers have stated recently. I am also feeling a lot of "post-IF" blogger guilt. I don't understand why me and not so many of you. I so very wish that all of you will be in my position soon. Please know that you are in my prayers daily and that now that my prayers for myself have changed, I am able to focus my prayers even more intently on each of you.

At mass this morning, this verse stood out to me thinking about the process of TTC and all of you. "It [love] bears all things, believes all things, hopes all things, endures all things." 1 Corinthians 13:7 If that doesn't sum up what each of you ladies goes through day after day, I don't know what does.

The Full Story

Earlier this fall I started thinking that I wasn't too happy with how my NAPRO doctor was responding to my miscarriages. He had done some tests and even found a couple of things (MTHFR heterozygous mutation [a blood-clotting disorder] and slightly elevated Natural Killer Cells). However, he thought both were minor issues and didn't need treatment – not even baby aspirin or extra folic acid which is pretty standard for a MTHFR diagnosis. I got to thinking, I have had three miscarriages and my sister has had two. Between the two of us, we have had five miscarriages and have never carried out of the first trimester. I felt strongly that there was something going on – this was not just random.


For a few months, on the Catholic Fertility Yahoo! Group there has been a lot of talk about Dr. Joanne Kwak-Kim, a reproductive immunologist in Chicago. I knew that she takes miscarriages seriously, that she takes insurance, and is pretty easy to get into, so we decided to give it a shot. I wanted to try to get in before the end of the year because I had already spent so much money in insurance, I knew it would be way cheaper to get all of her tests run in 2009 than it would be if I waited until 2010. I sent in all my paperwork and records in October. Not two hours after getting my positive pregnancy test, I got a call from her office wanting to set up my initial visit! They could get me in around mid-December. I let the receptionist know that I had just found out I was pregnant and that I wasn't sure if I should still plan to come now, or just wait and see what happened (I know her treatments are best started pre-conceptually). She said she would have a nurse give me a call back. The doctor went ahead and looked through my files that day and a nurse called me shortly afterwards. She said that from the information they had, she definitely felt I needed to be on some different medicine and that mid-December would be too late. Dr. Kwak said that if I could come out to Chicago on Monday or Tuesday, they would work me into their schedule (this was a Friday). So, I got on the phone with my husband and we decided to go for it. God was obviously opening some doors for us. I spent the rest of the day at work booking flights, hotel, car rental, and getting directions. We took off on Sunday night and were in her office first thing Monday morning.


I loved everyone on her staff! We were basically the first people there for the day and they brought me right in for an ultrasound. We were able to see the fetal sac and the yolk sac and we were only 5 weeks, 2 days. This was huge for us, as with our first and third pregnancies the yolk sac never developed. They were also able to tell me within 15 minutes of getting to the office that the blood flow to the baby was not good – the pressure within the vessels was too high. Next, I got my blood drawn – 21 vials! Then they let us leave for about an hour to get some breakfast because Dr. Kwak had a phone consult with another patient – I love that they didn't waste our time. When we got back, Dr. Kwak came in for an exam – she said, "I'll do a quick physical and then we'll go into the conference room to get some real work done." They brought my husband in and we went to the conference room, joined by two other doctors. Dr. Kwak went over my records and was able to tell me three things off the bat that could be causing my miscarriages. 1. The blood flow to the uterus; 2. The MTHFR; 3. The high NK cells. She explained how they all affected the baby and wrote the orders for my medications then and there. Before I left, the nurse taught me how to give myself injections of Lovenox, gave me a shot in the butt of progesterone, and left me with some samples of medicines.


Her protocol was as follows:

  1. Lovenox for the blood flow to the uterus and MTHFR
  2. Baby aspirin for the same
  3. Metanx (folic acid/B vitamin combo – the 2nd generation Folgard) for the MTHFR
  4. Prednisone for the NK cells
  5. Prometrium – for progesterone support and for NK cells
  6. Calcium and Vitamin D supplements (because Lovenox can cause bone loss)
  7. Weekly blood work
  8. Weekly ultrasounds in first trimester
  9. Exercise was limited to only low-impact aerobics, swimming, or yoga; 5-7 lb. hand weights; no ab work

We were thrilled to finally have some answers as to why we were losing our babies! Also, my progesterone level was at a 30, unsupplemented which was huge for me. When I did my hormone profile a year ago, my progesterone averaged a 5 post-peak!


We went home for Thanksgiving and my parents took us on a getaway weekend to the Georgia mountains. While there, I started spotting. I waited until the evening to tell my husband and we never told my parents. The following Tuesday, I was still spotting. We had an ultrasound and saw the baby and the heartbeat! I had a second episode of spotting about a week later. All ultrasounds were showing a healthy baby, measuring with to-the-day accuracy and a strong heartbeat. Thank God!


I had an OB appointment at Tepeyac at 8 weeks and Dr. B was on board and excited about my treatment plan. I think he thought it was overkill (I wondered as well, but found out at week 10 that it was not), but he said why not throw in the kitchen sink? He also said he was going to present me as a case study at their next doctor's meeting. I am legend now!


The Monday after Christmas I had a follow-up phone consult with Dr. Kwak to go over all my bloodwork results. I was at 10 weeks. Two new issues were found: Elevated Th1/Th2 cells, treated with Prednisone which I was already on. A homozygous mutation of PAI-1 (a blood-clotting disorder). Over the summer, my sister found out she had PAI-1 and I requested to get tested. The results came back negative as you may remember from this post. I thought it was weird that my sister would have it and I didn't, and always wondered if I should get retested. Well, thank goodness Dr. Kwak ran the test! I have since found out that there are two PAI-1 tests that can be run. One is for the polymorphism (genetic disorder) and the other is a PAI-level (I'm guessing this is testing your blood-clotting rate). I only had my levels tested this summer and those came back normal. I had no idea that the genetic test was never run – once again, thank God for Dr. Kwak! Treatment for PAI-1 is Lovenox which I was already on and possibly Metformin. Because my glucose and insulin levels were in range, she didn't think I needed to go on Metformin, but had my levels retested to make sure they were still normal. She also said to cut back on carbs and sugars and to focus on good carbs (whole grains). This is exactly what I was doing pre-conceptually, but due to the holidays and some queasiness, I had not kept up with the program. Testosterone was also found to be a little high, but the Prednisone works to counteract that, so all that was needed was a retest.


The blood flow to the baby had not improved, though hadn't gotten worse, which is good considering that the baby had grown from imperceptible on an ultrasound to over 4 cm. We upped my dose of Lovenox to 60 mg twice a day.


Next we found out some bad news. The blood lab had not sent my results to her office since the end of November! Originally I was asking for my results, but they were coming back good and I didn't want to obsess, so I stopped asking about them. I have never had a problem with a doctor getting my lab results, so I was quite surprised. One of the nurses spent the entire time I was on the phone with Dr. Kwak calling the lab to get my results and during that time they only found the most recent lab (which was obviously most important). The results were not good. In the past month, my progesterone had dropped from 58 (excellent) to 14 (horrible). My estrogen had dropped from 480 (perfect) to 130 (bad). She ordered two forms of estrogen for me, had me up my Prometrium and add progesterone injections. It seemed like overkill with two forms of each hormone, but I knew my hormones would be tested a week later and my meds would be changed up. The next day, like clockwork, I started spotting – the first I had seen in weeks. We were able to get an ultrasound for that Thursday (New Year's Eve) and prayed that it would turn out okay, otherwise we were going to have a horrible start to the new year. Luckily everything was great – I didn't even realize just how nervous I was until after we saw the baby and heartbeat on the ultrasound. It took a while for the butterflies to go away.


We retested my hormones the next week, the lab actually sent the results on time, and everything had much improved. I was able to halve both progesterone supplements and she wanted me to stay on the same protocol for estrogen. An ultrasound showed that the blood flow to the baby had improved as well with the increased dosage of Lovenox. I am now starting to wean off of the estrogen, Prednisone, and progesterone. Hopefully I will be able to come off of all of them at some point this trimester.


In other exciting news, my sister is also pregnant and is due one month ahead of me (I'm due July 25). Being my older sister, I am glad that she is able to take her rightful place in the family as the first to have a baby, although I am not letting her have too much time in the spotlight!


For those of you who have read this far, I am guessing you wouldn't mind seeing a couple ultrasound pictures, so here is my two favorites from the past few months. These are both from 11 weeks. We are so lucky to have picture of our baby's development week by week, and now bi-weekly.





Monday, January 18, 2010

God Provides

I was quite curious as to how much money I spent on fertility testing/treatments this past year. I knew that it was more than we had ever spent before as I had three surgeries, tons of bloodwork, countless ultrasounds and more medications than ever. In all of this, I never knew how much insurance would be covering, and just had to trust. We are very lucky to have an amazing insurance plan. We have truly been blessed by this. Even with seeing three out-of-state doctors and having all surgeries at out-of-state hospitals, everything has been in-network! Being that we get our insurance through a Catholic organization, I am sure that they have a lot of restrictions on what is covered as far as fertility testing and treatment. Hats off to my doctors for always coding my visits and orders in ways that were chargeable under my insurance plan!

So, I spent a thrilling evening in front of my computer with all my insurance statements from the year to do some calculations. This may not be totally complete, but the gist is:

Insurance was billed about $63,000 for this year's events. They handily cut that down to only $17,500, of which I was charged $3,600. Medications kicked our out-of-pocket payments over the $4,000 mark. Overall, not bad at all! Considering that ART procedures could cost several times that amount and that I have REAL answers to my problems and will not have resort to expensive ART "treatments" every time I want a baby, working within the guidelines of the Church really pays off!

I am so thankful that God has provided for us this past year. Without insurance, there is no way we could have afforded this level of testing and treatment. God also provided so that we could afford to make out of town trips, some requiring hotel rooms and flights without breaking our budget. And he even allowed us to have flexible enough work schedules that we could literally take days off of work to make visits to doctors and recover from surgery, sometimes on just days notice!

Looking into our future, we know that at this time next year, we may have a different insurance plan. How expensive that plan will be and how flexible it will be in covering future fertility expenses is a total unknown. So it is amazing to see God's hand at work. I feel that we have covered so many bases and received so many answers over the past few years when we have had affordable and comprehensive insurance. We have been able to check so many things off of our list that we will not have to repeat in the future. How generous God has been with us. He knew what we would need at this time in our lives and He provided. Insurance, flexible work schedules, and access to excellent doctors are definitely not things that I thank God for on a regular basis, but what a gift they have been!

"If God so clothes the grass of the field, which grows today and is thrown into the oven tomorrow, will he not much more provide for you, O you of little faith? So do not worry and say, 'What are we to eat?' or 'What are we to drink?' or 'What are we to wear?' All these things the pagans seek. Your heavenly Father knows that you need them all. But seek first the kingdom (of God) and his righteousness, and all these things will be given you besides." Matthew 6:30-33

"If you then, who are wicked, know how to give good gifts to your children, how much more will your heavenly Father give good things to those who ask him." Matthew 7:11


"Are not five sparrows sold for two small coins? Yet not one of them has escaped the notice of God. Even the hairs of your head have all been counted. Do not be afraid. You are worth more than many sparrows." Luke 12:6-7

"My God will fully supply whatever you need, in accord with his glorious riches in Christ Jesus." Philippians 4:19

Reflection Questions
1. In what ways has God provided for me on this journey?

2. What doors has He opened that I did not expect?

3. Do I remember to thank God for the mundane things in life – even insurance and doctors?

Prayer of Thanksgiving

Almighty God, Father of all mercies,
we your unworthy servants give you humble thanks for all your goodness and loving-kindness to us and to all whom you have made.
We bless you for our creation, preservation, and all the blessings of this life;
but above all for your immeasurable love in the redemption of the world by our Lord Jesus Christ; for the means of grace, and for the hope of glory.
And, we pray, give us such an awareness of your mercies, that with truly thankful hearts we may show forth your praise, not only with our lips, but in our lives, by giving up ourselves to your service, and by walking before you in holiness and righteousness all our days;
through Jesus Christ our Lord, to whom, with you and the Holy Spirit, be honor and glory throughout all ages. Amen.

Sunday, January 10, 2010

Humbled

After mass on New Year's Day, we were blessed to be asked by friends to be godparents for their little boy (to be born a few days later). It is always humbling to be asked to be godparents, especially for people who you aren't related to, but this one was especially humbling. Why? Because I remember how I felt that day when they announced after mass that they were expecting. I remember the look my husband and I exchanged when another set of friends exited the church and we again witnessed to the pregnancy announcement. I remember trying to unsuccessfully tune out all the giddy talk that was exchanged between some of the girls while I tried to focus on a conversation with the guys. I remember not responding to the mass-emailed pregnancy announcement that was sent a couple days later (I had already said my congrats in person, no need to do it again via email, right?).

Were my feelings unwarranted? No, they were true to my situation. Was I wrong to focus inward on what I didn't have instead of on the joy of a birth announcement? Probably. I have a major tendency to be self-focused, especially related to anything having to do with pregnancies or babies. Was I putting up defense mechanisms to protect my aching heart? Definitely.

But God works with us despite our weaknesses. We see it throughout salvation history. God takes sinful and weak men and makes them the great leaders and figures of the bible. God can take us where we are and work through us as long as we allow ourselves to be His instruments. Sometimes He asks us to do things we do not wish to do, but when we take on His challenge, we find that we benefit more than we sacrifice.

How incredible to see God taking my weakness and turning it into something beautiful. This little boy and this family will always be connected to us. In fact, we will have responsibility towards this child – something we never expected that spring day.

"Have pity on me, Lord, for I am weak; heal me, Lord, for my bones are trembling." Psalm 6:3

"Those whose steps are guided by the Lord; whose way God approves, may stumble, but they will never fall, for the Lord holds their hand." Psalms 37:23-24

"Three times I begged the Lord about this, that it might leave me, but he said to me, 'My grace is sufficient for you, for power is made perfect in weakness.' I will rather boast most gladly of my weaknesses, in order that the power of Christ may dwell with me." 2 Corinthians 12:8-9

"For God is the one who, for his good purpose, works in you both to desire and to work." Philippians 2:13

Reflection Questions
1. Have I fallen into focusing on myself instead of the joys and sorrows of those around me?
2. Am I open to God's call, even if it is something I do not want to do?
3. How is God using my weaknesses for good?

Litany of Humility

O Jesus! meek and humble of heart, Hear me.

From the desire of being esteemed,
Deliver me, Jesus.

From the desire of being loved...
From the desire of being extolled ...
From the desire of being honored ...
From the desire of being praised ...
From the desire of being preferred to others...
From the desire of being consulted ...
From the desire of being approved ...
From the fear of being humiliated ...
From
the fear of being despised...
From the fear of suffering rebukes ...
From the fear of being calumniated ...
From the fear of being forgotten ...
From the fear of being ridiculed ...
From the fear of being wronged ...
From the fear of being suspected ...

That others may be loved more than I,
Jesus, grant me the grace to desire it.

That others may be esteemed more than I ...
That, in the opinion of the world, others may increase and I may decrease ...
That others may be chosen and I set aside ...
That others may be praised and I unnoticed ...
That others may be preferred to me in everything...
That others may become holier than I, provided that I may become as holy as I should…

Sunday, January 3, 2010

A New Year's Reflection

Happy New Year! The new year has always been a time of excitement for me. It helps to have a set time where I can think about what I want to accomplish in the year ahead, instead of letting life flash before my eyes. For me, last New Year’s was different. Instead of excitement about the year ahead, I felt…nervous. I had never sat up on New Year’s Eve feeling nervous about what may be in store in the year to come. It perturbed me because I knew that the nervousness was related to my infertility and miscarriages. Infertility had taken over so much of my life that instead of feeling hopeful anticipation about the year ahead, I was worried about what may be in store. I feared another pregnancy loss and how I would cope. I’m sure my laparoscopy that was scheduled for the end of January contributed to the nervousness as well.

But I made it through 2009. It was filled with lots of doctor’s appointments, three surgeries, one pregnancy loss, my sister’s loss of her second baby, a short-lived case of Asherman’s Syndrome, and diagnosis of endometriosis, two blood-clotting disorders, and hormonal issues. I also made it to the magic number of three miscarriages when doctor’s agree extensive testing must be done and they classify you as a recurrent miscarrier. But I found that even with three miscarriages, most doctors still blow off the issue unless they can find something significant in their testing.

When I went to write our Christmas letter this year, I gave up and decided to just write a short, hand-written note in each card. This isn’t exactly the type of news that Christmas letters are made of, and we didn’t do anything too exciting during the year other than some visits with family. Still, 2009 didn’t conquer me and I ended feeling thankful for the gifts that I do have. Some of our friends faced so many challenges this year, and even though last year wasn’t great, I am definitely thankful that I don’t have to bear the crosses that some of our friends have been asked to carry.

Looking into 2010, I am not nervous. I found that even though difficult things happened in 2009, there was still a lot of joy and happiness in our lives. I am blessed with an amazing husband who is perfect for me. We live comfortably, have secure jobs, enjoy close relationships with our families, and have developed some wonderful friendships. Most of all, I know that God is always with me, even when I don’t understand what He is doing with my life or why He is taking so long in answering my prayers. He is generous in the grace that He shares. His love is ever faithful, even when I am not. It is so easy to focus on this life, to think about what I do or do not have, the dreams that were not realized this past year. It is so easy to forget that I am living for the life to come. I will only find true contentment in heaven. I have cause for joy and hope in my Savior. May this year bring all of us closer to the joys of heaven!

“Do not worry about tomorrow; tomorrow will take care of itself.” Matthew 6:34a

“I consider that the sufferings of this present time are as nothing compared with the glory to be revealed for us.” Romans 8:18

“May the God of hope fill you with all joy and peace in believing, so that you may abound in hope by the power of the Holy Spirit.” Romans 15:18

Reflection Questions
1. How has the Lord worked in my life over the past year?
2. What non-fertility related goals can I set for myself in 2010?
3. What can I do this year to bring me closer to the goal of reaching heaven?

Opening Prayer from Mass
Father of light, unchanging God, today you reveal to men of faith the resplendent fact of the Word made flesh. Your light is strong, your love is near; draw us beyond the limits which this world imposes, to the life where your Spirit makes all life complete. We ask this through Christ our Lord.