Sex: to know or not to know?

First off, I have to announce the wonderful news of my newest nephew’s birth! My sister gave birth to Brady Matthew on Friday afternoon. Even though he was born at 34wks, he was a healthy 5lbs 1oz and is making great strides in the NICU. He’s already drinking from a bottle, and it appears he’ll only need a short stay at the NICU!

I know several of you are already aware, but for those who haven’t heard there have been some major headlines this past week in regards to the weekly Progesterone (P17) injections that women like myself in high risk pregnancies are prescribed weekly from weeks 16 to 37 to prevent preterm labor. In the past these injections have been made inexpensively by compounding pharmacies. I actually just picked up my first prescription for the compounded version last weekend and started these weekly injections on Tuesday. Now a drug company has received FDA approval for a branded version of this medication called Makena, and with that the costs are sky rocketing. Seriously, the cost per dose had been around $10 and under the branded version will be $1,500!!!! I won’t get into all the details here; you can read more about this in these articles.

Women who fall into the income guidelines and are uninsured will have access to the medication; the concern is where all of us in the middle will land in terms of coverage. The drug company making this new medication has written letters to compounding pharmacies ordering them to cease and desist making their compounded versions so that their medication, Makena is the only option available (per FDA rules). When I filled my last prescription for the injections at my pharmacy I had to pay a $30 co-pay. I talked to the pharmacy the other day and they are uncertain of how these changes will affect them at this time, but I wasn’t able to get a refill this early so time will tell how much I’ll be paying for this medication at the end of the month. As someone who works in the healthcare system, another concern is our already overwhelmed state funded Medicaid programs that will have to shoulder the enormous cost of this medication. This serves as one more example of how the arbitrary and sometimes greedy prices pharmaceutical companies set can wreak havoc on people’s lives.

Now on to a lighter topic, sex: to know or not to know? With our first pregnancy we knew we wanted to find out the sex of the baby without a doubt. This time around we feel differently; we’ve been very seriously considering keeping the sex a surprise. In terms of coping with infertility and loss, we’ve been forced to become more patient and have learned that sometimes the wait is worth the payoff. I’ve heard from women on both sides, those who have found out the sex and were extremely happy with their decisions, and those who haven’t and said it was the best surprise they’ve ever experienced. We’re pretty certain at this point we’re not going to find out. So much has been taken away from us in terms of infertility, and this is one amazing surprise we get to experience together. Anyone out there regret their decision one way or another?

Waiting...

My appointment with the OB was pleasantly uneventful, got another heartbeat check and the reassurance that all is well. I start my weekly progesterone injections this evening, another tangible act that I know is helping to keep this baby healthy. My doctor is so supportive and wonderful. She asked how I was handling things emotionally as I progress farther into the pregnancy. I answered honestly, that I think I’m doing well considering, and that I know I’m doing all I can to keep this baby healthy, but the reality is that the farther I get the scarier it becomes, the more there is to lose. She reassured me that as I get closer to the time when I lost Lily, if I need to come in for a heartbeat fix or just to hear that everything is okay from her that it’s alright. It’s so nice to know she is empathetic towards my loss and understands the impact it can have on this pregnancy.

The waiting room of the OB’s office is still a really difficult place to be as an infertile and as a loss survivor. The scars of infertility feel so exposed when in that space, that feeling of being out of place, of not belonging and uncertainty. It’s still so hard to see so many people who pregnancy appears to happen for so easily, so many who appear to not be ready for pregnancy, yet are experiencing it without difficulty.  I doubt I’ll ever feel completely at ease in the waiting room of an OB’s office, but I also feel that given the life experiences that have brought me to this point, it’s normal and understandable to feel this way. I’m just relieved to have a doctor I feel I can put my faith in and that’s enough for me.

At work the news about my pregnancy has been spreading, and I’ve been receiving a lot of congratulations mixed in with the question, so this is your first? It’s almost a relief really, to be able to talk openly about my daughter. To have the opportunity to share her story and this major part of my life. One of the nurses I work with sympathetically asked if it’s difficult for me to talk about her. I told her no, it’s nice to talk about her. She’s my daughter and just like every other parent I like to talk about her, but so few people ask. It’s nice when people care, when they want to know, when they take the time to listen.

Thank you all for the positive thoughts, prayers, and hope that have been sent for my sister, brother in law, and their baby. She’s still stable on strict bed rest in the hospital and they are planning to induce on Friday when she reaches 34wks!

Updates...

With anxious anticipation we finally had our monthly OB appointment this afternoon. I was SO ready for this appointment! The doctor found the heartbeat right away and it was measuring at 155bpm. We’ll have another appointment next Tuesday to go over how to administer the Progesterone injections I’ll be starting on a weekly basis, even though Nick has administered about 150 of them throughout my two pregnancies. I will also be doing the PENTA screening at that appointment. This is a screening done in the 16^th week of pregnancy to assess prenatal risk for neural tubal defects, down syndrome, and trisomy 18. Although we didn’t do any screening on my first pregnancy, we decided that any additional information we get will help us to mentally prepare for whatever is to come.

We’re still really looking forward to our appointment with the MFM specialist on March 21^st, but feel more reassured now that we’ve had another heartbeat fix and heard from the doctor that everything appears healthy. As we were leaving the clinic though, we saw a couple that had been called back shortly before us, the woman probably 20+wks pregnant. They were standing in the parking lot hugging each other sobbing. It broke my heart; I thought of all the things that may be wrong, all the terrible news they may have received. It’s so random, the good news and the bad, so awfully sad and random at times. It was hard not to run up to her and give her a hug and tell her you’ll get through this, you’ll survive.

In other unexpected and scary news, my younger sister is pregnant with her second child and quite unexpectedly went into preterm labor early Monday morning when her water broke at 32wks 3 days into her pregnancy. Thankfully, they got to the hospital right away, and although she is now hospitalized on strict bed rest, the contractions are not occurring and they’ve been able to administer steroid injections to develop the baby’s lungs. She will remain hospitalized in the hopes they can get her to 34wks on March 11^th at which time they will induce if she doesn’t go into labor before that time. The baby appears to be healthy and is measuring at 4lbs 7oz so hopefully the NICU stay will be short & sweet. So please send lots of positive thoughts, prayers, and hope my sister & brother in law’s way; this is a long awaited and very hoped for baby!

And finally, Sunday marked 8 months since Lily’s birth and death. It’s so odd; it doesn’t seem that it was that long ago at all, maybe a few months, but certainly not 8 months! I definitely feel more at peace emotionally with my grief than I have in the past. It’s there, but not as raw or painful or ever present as it was in the beginning. There are more components that make up my life, more pieces of myself that I’m able to focus on. One thing I know with certainty is that my relationship with my husband has grown only stronger with all we’ve been through in the past year. I’m so incredibly thankful for him and feel that as long as he’s by my side, we can survive whatever comes our way. 

Stand up!

It’s so difficult to not go there in my mind. The other day at work I was walking through the hospital and I started to feel some back pain, completely normal during pregnancy, but I couldn’t help it, my mind went there. Back pain was the first symptom I felt the day my pregnancy with Lily ended, radiating back pain. As I begin to worry, I attempt to calm myself and think through the pain; it’s not radiating, it’s not coming & going in a pattern, it’s just a little back pain, but it’s also a reminder. Things could change in an instant.  Such is the anxiety of a pregnancy after loss, riding an emotional roller coaster trying to make it to the end of the ride. Overall doing well, feeling a little less fatigued and really looking forward to my next appointment on Tuesday!

As a woman and a social worker, I believe strongly in a person’s right to self determination. Throughout our journey with infertility I have been incredibly aware that I am so lucky to live in a time and place that allows me to make the decisions that have been afforded to us. Keiko posted an important update on recent legislation that all of us as women should care enough about to get involved. And as she said, those of us ladies who have struggled with infertility need to be especially cautious of some of this legislation which attempts to control women’s access to healthcare and can have a major impact on infertility treatments in the future. Do you want someone legislating what you do with your frozen embryos? As someone who has been on the receiving end of donated embryos I am incredibly thankful, but maintain that it should be the CHOICE of the donor couple what to do with their embryos and should not be a decision that is taken out of their hands. Furthermore, one of the most infuriating pieces of legislation has to do with investigating all miscarriages!  Imagine miscarrying after 6 weeks and your doctor having to report it to the government. This is so absurd I am quite certain it will never become law, but the fact that someone in office is so ignorant as to even suggest this makes me realize how important it is that as women we stand up for our rights! Click here to sign a letter in support of Planned Parenthood and to speak out against the funding cuts they will receive. These cuts will have a dramatic affect on the healthcare resources available to women in all of our communities. Vital resources such as birth control, cancer screenings, HIV/STD testings, and other lifesaving care! So ladies, I urge you…stand up, speak out, and let your voices be heard!

Lastly, this website, Damn You Auto Correct, brought me more laughs than I’ve had in a long time…hilarious!

Listening brings understanding & blog hop...

If you didn’t catch Stirrup Queens post earlier this week about discussing infertility, you’ve got to click over and check it out. As always, it’s incredibly well written and delves into the fact that it’s not just a matter of us talking about infertility, but also the need for people to actually listen to what we’re saying. I think that it’s likely all of us who have been open about our infertility struggles in real life have encountered ignorance as a result of that, and the fact that people often respond with judgment and unhelpful advice further ads to the frustration. I hope that in time understanding of infertility and assisted reproductive medicine will improve, and that the legislation surrounding mandated coverage will follow suit.

Those of you in the BLM community have probably seen that Franchesca has started the Small Miracles Blog Hop, and the topic this month is hope. If you haven’t already, I encourage you to join the hop and discuss what has brought you hope lately.

Of course this pregnancy has brought hope and continues to, but I think that the gift that allowed this pregnancy to occur in the first place is what truly brings me hope. Hope not just for me personally, but for the broader humanity that is the world in which we live. The fact that there are people like our donor family who care enough to reach out to us, a family half way across the country who they didn’t even know before, and to take the massive leap of faith of entrusting us with their embryos fills me with such hope. Hope that there continues to be incredibly good people and amazing acts of love that exist in this world. I think as a society we tend to focus so much on negative, tragic, and awful circumstances that we lose sight of all the compassion and kindness that occur as well. That is the hope that propels me forward and leads me to believe that although there has been a lot of sadness this past year, ultimately our future holds joy and memories to embrace.

Lastly, had to share this beautiful article. I loved how the author described how grief, while always a part of us, changes throughout our lives. “It seems that the longer we’re here experiencing the ride of life, the more life gives and takes from us. In this journey, our souls, like tattooed bodies, hold the patterns of brightly blooming, colorful pain that burns and slowly heals over time until it fades into the outline of our memory – still there, always there, but never quite the same.”

Conflicting emotions...

First off, I know I’ve been a bit MIA lately, but I’ve honestly just been so tired, trying to catch up on sleep when I can since I’m not sleeping great at night, and just trying to take things one day at a time. I received a call from my OB’s office to notify me of my appointment with the MFM specialist. I’m scheduled to see her on March 21st; they said after I check in, I’ll go for a sonogram and then I’ll have a consult with the specialist. I’m really looking forward to this appointment and a bit disappointed it’s so far away. I have my next appointment with my OB on March 1st. I’m very happy to report that as of yesterday I’m officially off the Progesterone injections and Estrace pills! At my next OB appointment we’ll talk details about starting weekly Progesterone injections beginning at week 16, but until then I get to enjoy a bit of a drug free vacation. Also, for those of you who have experienced preterm delivery in the past, a friend shared this article with me about a new medication that has been approved by the FDA to prevent preterm labor in women who have experienced this in the past. I plan to talk with the doctor about this at our next appointment as well.

So mentally I’ve been trying to take things one step at a time; I’m really glad to have hit the 12 mark, but it hasn’t really taken the worry away as I still know all too well things can go wrong past the first trimester. Seeing this article yesterday was another sad reminder that things do not always end as they should.

Since losing Lily it’s been hard being around pregnant women and hearing people talk about their newborns, but I did take a big step forward this past weekend. I visited my dear friend Rachel and her new baby Simon. Both she and I were a little worried about how this visit would be emotionally, but thankfully it was wonderful. It had been a very long time since I’ve held a healthy newborn in my arms. I held Simon for a long time during my visit and it was incredible. He is fantastic, and in a matter of only a few minutes I fell completely in love with the little guy! During the past few years of struggling with infertility, the thought has crossed my mind that we’re trying so hard to reach this goal that everyone says is the most amazing thing, to become a parent, to have a child, but is it really what we want or is just the message that has been engrained into our minds through society’s expectations? That day though, holding Simon, I left knowing that without a doubt I absolutely want this and that all of the struggles and challenges will be worth it when we hold our baby.

A fellow blogger had mentioned to me that the farther along she’s gotten in her pregnancy the more fear she has felt. I didn’t think I would feel that way, but at this point I’m definitely feeling more fearful. Last night I had a really hard time falling asleep worrying about what would happen if something went wrong and feeling so uncertain of whether I should share the news about my pregnancy with co-workers on my floor in the hospital where I work. I’m extremely torn emotionally in this respect. On the one hand, I want to embrace this pregnancy fully knowing how incredible it is, but on the other hand I’m having a difficult time not feeling terrified of all that can go wrong, and my more cautious side has me feeling apprehensive about getting too excited, planning too much, or sharing the news with too many people.

Yesterday I read my friend Tiffany’s blog and it completely brought me to tears. She talked about how when I lost Lily she made the decision to take a picture of her son, Julius, every day because she knew how life could change in an instant. She felt Lily made her a better mother and helped her to cherish the time she had with her son. Tragically, only about three months after this, her son died as a result of SIDS. I know there are no guarantees, and I have learned intimately this past year that life can change drastically in an instant. I guess I need to learn to integrate that reality into also attempting to cherish what I do have while living in the moment. As one of my favorite songs says…Let it be, let it be, let it be

Reassurance...

We met with our new OB for the first time today and it was wonderful! I can’t say enough good things about her; she completely set me at ease, and I feel confident I’m in capable, compassionate hands. We discussed my history and she answered our questions. She highly recommended us seeing the MFM (maternal fetal medicine) specialist to determine what she would recommend given my history to prevent preterm labor. There is only one MFM specialist in our area and she is in high demand, so they refer me and we wait to hear from her office as to when she wants to see me. The OB checked the baby’s heartbeat with a doppler and it was a strong 172bpm. I’ll return to the OB’s office in a month for my next check up with her and wait to see when the MFM specialist will see me.

You may have noticed I’ve been avoiding placing one of those pregnancy tickers on my blog up until this point. I decided since I’ll be 12wks Saturday I suppose it’s time to take a leap of faith and add it. As Nick said, we’ve been trying so hard to protect our hearts against another loss, but even if something were to happen again, nothing we do or don’t do will make it any less painful. I definitely feel reassured after our appointment today and know that a lot of this is out of our hands, so we hold to hope and we wait to see what the future holds for us.

Lastly, I have two close real life friends, one of which recently received difficult news and the other with the most amazing news. I’m hoping all of you incredibly supportive bloggers will stop by to offer them some love. First, my dear friend Melissa just experienced her second failed IVF cycle. Many of you know the frustration and pain of going through IVF only to not make it to transfer. Please flood her with support and encouragement as they try to decide how to move forward from here.

And to end things on a happy note, when I started blogging I knew it would likely bring me support, but little did I know I’d make some real life friends in the process. One of those friends was made out of tragedy; both she and I lost our daughters last year. We’ve traveled through the grief of losing a child together. Rachel has been an immense support to me, and today I’m thrilled to report she welcomed her rainbow baby into this world! There had been some concerns previously about whether he may have some health problems, but this time the universe got it right, and in the midst of a crazy blizzard, Simon Kale was born weighing 8lbs 13ozs and thankfully perfectly healthy!!

Also, to all of you who have lost a baby, I encourage you to stop by my amazing friend Tiffany’s blog for her giveaway this month! She is such an incredible person and has also started a new organization called In His Name to pass on support to families affected by SIDS losses; check it out & be inspired!