Fear on the Edge

Lately, I admit I have let fear take hold of me. I feel like I am standing on the edge, preparing to jump and I am just plain scared.

On the eve of my anatomy scan, I have the “normal” worry about the overall health and growth of my girls. I also have the added weight and worry about the impact of NAIT (my platelet issue) on the girls. I worry that I or the doctors will make the wrong decision which could forever impact the health of one or both of these precious girls.

This worry and fear actually led me to get into a little spat with my OB at my last visit. It started as a disagreement between whether delivery should occur at 37 or 38 weeks (protocol says 37, which was my argument). He kept insisting that he would make that decision when the time comes based on the monitoring of how they are doing. The huge flaw in his argument is that there is no way to monitor “how they are doing” in regards to NAIT because there is no blood test to monitor and the only thing an ultrasound can tell us is if there has already been a bleed on the brain at which point it’s too late! I reminded him several times that there is no way to monitor them, at which point he finally snapped “well, you’re the one who decided to get pregnant” and walked out of the room.

This worry and fear for their health has also given rise to a fear of guilt. As my OB not-so-gently stated, I did decide to get pregnant even with this medical issue. I chose this for my girls. A few weeks back I was really struggling with this, wondering what mother puts her children knowingly at risk. Thankfully, I have come to a place of overwhelming peace on this front. I was driving; worrying; praying - and then God made it really clear to me. I am being obedient to Him and whatever happens is therefore His intended plan to bring glory to Him. I didn’t get reassurance that they will both “be fine” but I have been covered in God’s grace and peace. Having this weight lifted has been huge.

Yet, even when that weight lifted, I still stand in fear. Going to the doctor; standing my ground; advocating for my health and my babies health; battling wits over medical journals with professionals who are top in their fields – it’s all exhausting. And then there are the infusions. I know they will take 5-6 hours each at one per week and I know the list of possible side effects. And still there is an overwhelming fear of the unknown. This fear has me on edge; it brings me to tears. 

Please keep us is your prayers over the coming days and weeks. Our anatomy scan and follow up with the hematologist is tomorrow. My first infusion is on Thursday, September 18^th. 

Released from the NEDC

As I've previously grumbled about, the process of tapering off the POI has been a bit of a headache. Last Thursday I was due for a final blood draw of my progesterone and estrogen levels to confirm that my body was doing its job in the absence of the medications. I had a doctor’s appointment the same day so I figured I would take advantage of the “big city” Atlanta facility who could actually run the tests STAT rather than going to my local hospital which takes several days to process the results.

I had my blood drawn on Thursday, July 24^th and by Monday July 28^th the NEDC still had no results. I was back at the doctor on Monday anyway so I stopped by the lab to check on why the results had not been sent. They told me they were not sure if the results had ever been sent but that they would put in a request to have them sent.

Tuesday morning they finally sent results to the NEDC, but instead of sending the blood results they sent urinalysis results from my 9 week OB appointment. After multiple phone calls to multiple people (many who were less than friendly), I finally found a really nice customer service person who had my results sent over. Vinessa called me a few hours later to tell me that my levels looked great and reminded me to send them information on the birth of our babies.

I love the staff at the NEDC and I feel so blessed to have been able to work with them now twice, but it really feels like a huge milestone to be fully released from the NEDC. 

Contractions!?!

Sunday night as I was getting Leland into bed I noticed I was having several sharp abdominal pains. Robert finished reading to Leland and I went to rest in bed. After a short time, the only way I could describe the pains was as contractions. They were rhythmic and at their peak, they were strong enough to take my breath away. I tried emptying my bladder, drinking fluids and resting  - but they persisted. I never had any Braxton Hicks contractions with Leland, but having had contractions during my induction with Leland I was nearly certain that what I was feeling had to be contractions.

Worried, I called the after hours line with my OB / MFM office. The on-call doctor ran through the typical questions - sex? gas pains? ligament pain? - she seemed to imply that if it really was contractions that would be the sign of a miscarriage and that at 13 weeks there would be nothing to be done about it. She did recommend I come into the office first thing Monday.

Monday morning, I called for an appointment and was relieved that my OB actually had an available appointment. As soon as he came in, I explained what had been happening. He immediately said that contractions at 13 weeks with twins is completely normal due to the extensive stretching of my uterus. He reassured me and pointed out that they will continue as I continue to grow. I had a brief ultrasound to see their heartbeats. Right now babies are both transverse (laying left to right) one on top of the other.

I am so relieved that they are growing and doing well. Contractions are scary, but I am relived to now know that they are normal - maybe even a good sign of growth. Though, between working full-time, toddler wrangling, and running back and forth to the doctor, I am feeling the physical toll more that I would have expected so early.

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.

Our Journey

Here's the recap of our journey:

1999 - age 15 - diagnosed with Oophoritis (inflamed ovaries) after 18 months of no periods. Told to take BCP and see a doctor when I was ready to have kids. Is this really a diagnosis?

2001 - started dating my husband

2006 - married

2007 - age 23 - got a real diagnosis of Premature Ovarian Failure. My ovaries look like raisins. Told donor egg IVF would be our only option.

March 2009 - Traveled to the National Institute of Health in Bethesda, MD for Premature Ovarian Failure study. Concluded Premature Ovarian Failure was likely autoimmune. Introduced to the option of embryo adoption.

May 2009 - "diagnosed" pregnant by my GYN. One week later - negative Beta.

December 2010 - started embryo adoption process

February 2010 - accepted with the National Embryo Donation Center

September 2010 - home study complete. Matched with 5 embryos.

November 16, 2010 - FET#1. Thawed 5 embryos. 3 embryos survived and transferred.

November 26, 2010 - POAS. BFP.

November 29, 2010 - Beta 993

December 15, 2010 - First u/s. One heartbeat.

July 3, 2011 - low amniotic fluid. Leland born at 35 weeks.

September 23, 2011 - first day back at work (more on this later)

Through this crazy journey I have found strength is God, trusting in His perfect timing. I have also found strength in my amazing husband and in the incredible group of women bloggers I follow. At times when I felt my journey wasn't progressing, reading their stories kept me going. In comparison to so many my journey has been short, but it hasn't been easy. And while having my miracle baby heals many wounds, it does not make me fertile.

Finally, a few things about me. I'm an attorney - I practice juvenile law. I have three furbabies - 2 cats and a very spoiled Cavalier King Charles Spaniel (Daisy). I enjoy traveling, sewing, baking, and kayaking - and any adventure with my husband by my side.

No One Ever Told Me

I think all women going through pregnancy or life as a new mom have a "no one ever told me moment." I first witnessed this in college with one of my adjunct professors. One semester in college the professor in 4 out of my 5 courses were pregnant - oh the hormones! One of the professors with a new adjunct. One day we informed her about a schedule change due to our yearly career day. She response with what I called her no one ever told me meltdown. It started with no being told about the career day and spiraled down into all the things she was never told about pregnancy.

Since then I have noticed that most women have this moment. One friend of mine noted after the fact that no one told her that on the 3rd day after birth her newborn would eat constantly to help bring her milk in. She thought her daughter was starving and had a pretty rough night.

Despite all the reading and advice seeking I have done, even I had my no one ever told me. I did not know that having an epidural or spinal block (I had one for 24 hours because of the c section) caused the digestive system to shut down. Yep, even the books I read forgot to mention that. This system shut down results in horrible gas pains, days with no movement, and a total lack of appetite. And no though to mention this prior to the recovery room? Being a new mom is full of surprises.

Has anyone else had a "no one ever told me moment"?

Pregnancy Weight & Wii Fit

I have a confession. I gained a lot of weight during my pregnancy. I mean a lot! I keep telling myself that it is not really all my fault. First, I blame the hormones during the transfer protocol (I gained 9 lbs during that time). Next, I blame my thyroid. I spent more than half of the pregnancy with low thyroid levels. We kept upping my Sy.nthroid levels, but it kept getting off. During a time in which we discovered that my thyroid was particularly low I was packing on several pounds a week. For the last month - when we finally had my thyroid regulated a gained barely any weight. Finally, I blame the horrible swelling.

So, here is the breakdown. Pre-transfer weight = 152. Pre-pregnancy weight = 160. End of pregnancy weight = 200. A final weight gain of 48 lbs or a 32% increase in my body wight.

The upside is, I am actually making progress losing the weight. In the first 12 days I lost 23 lbs (mostly water I assume). Then I got on the scale at my doctor's office at five weeks and I had not lost anymore weight. That was discouraging. But I am determined to track my weight and get it off. So bring in the Wii Fit. I dreaded getting on it, knowing I would have to watch my little character swell up to represent my now larger size. Having avoided the Wii Fit since before the transfer, I was not looking forward to being interrogated by a video game as to why I had gained so much weight and failed to meet my prior weight loss goal. I braved it and got on yesterday. It my surprise, I have lost 5 lbs more.

So, today I weigh 172 lbs. 12 lbs more than my pre-pregnancy weight and 20 lbs more than my pre-transfer weight.