Let's see...the last time I posted was after I tackled the project of hanging up Lucy and Liams urns...yeah, I still have trouble saying that. It's been a long road since and we've tackled a lot.
We decided to go through another round of IVF in May and in true "loss" parent style, we kept a lot to ourselves. I'm really open about our struggles and losses but when it came to the fear and anxiety associated with going through this whole thing again, my husband and I really only felt like we "got it"...it's isolating, honestly.
On the day of our transfer in May while resting after the transfer in our hotel room, two bright rainbows lit up the bleak storm filled sky outside our hotel room...it was a small reminder that our angels were with us.
I am a POAS addict (pee on a stick) when it comes to IVF cycles. They warn you not to. I don't follow rules. So when the time came that I knew I had gotten positive results with the twins, I started testing. Negative, negative, not pregnant, then faint, faint lines that nobody else saw but me and I faced the conversation that it maybe just didn't happen for us. I came home one day after work, sobbed, blamed myself for putting myself through this possibly too soon and went to bed.
The next day, June 8th, Lucy and Liams original due date, I woke up early to get ready for work, took a test, showered, paid no attention...because my heart just prepped me for disappointment. I glanced at the test for a moment, with zero hope...1-2 weeks pregnant. I screamed. I jumped on my husband. I was elated. I also knew it was another sign that Lucy and Liam were looking over us.
We kept the news pretty hush hush...a lot of people didn't even know we had even thought of trying again...they say announcing a pregnancy after a loss is one of the hardest things to do. I didn't get that, until I was pregnant. I felt like after losing this gift months prior that I just wanted to keep it to myself because if I spoke of it I would somehow jinx it. My husband was my saving grace to convince me we were going to be positive about this pregnancy and despite the loss we've suffered this was a new pregnancy. We had to go in open minded. He's right. Yes, you're right, Matt.
As high risk as my pregnancy is, it's been very uneventful. I saw my MF (Maternal Fetal specialist/an OB essentially that only handles high risk pregnancies) right after finding out. We talked a lot. I love my doc for this main reason. It's not white coat demeanor with him. He's human. He's listened as I cried, complained, had anxiety attacks, vented anger. That first appt was just basically like meeting with a good friend who happens to be the main person helping me bring a healthy baby into this world. We set up a game plan.
So...I delivered my son Jude preterm, the twins preterm, so needless to say I am at high risk for preterm labor. Incompetent cervix. I really had no risk factors for this and honestly sometimes women deliver early but then have to be induced in later pregnancies so the fact that I had Jude early was noted with the twins but wasn't this huge red flag. Carrying twins showed the true issues I had. So I now was terrified. I knew it was a positive thing that we were pregnant with one baby. Multiples make you at risk for preterm labor in general but there also is no proven method to maintain a multiple pregnancy with incompetent cervix like there is with a single baby. For example, cerclage is not shown to be effective nor is progesterone therapy. I knew we already had that going for us.
13 weeks, I had surgery to have a cerclage...essentially they sow your cervix shut to prevent preterm labor. In Lucy's case I had really no signs of labor, my cervix just gave in and she started to deliver. A cerclage is meant to prevent this. At 16 weeks, I started progesterone therapy. Similar to progesterone shots in IVF but only once a week. These help keep the uterus and cervix "calm" and have been proven to prevent preterm labor...magic shots.
That's really been it combined with bed rest. Modified bed rest, thank God, since things have been going so well. I can take my son to school, run a quick errand, etc but I have to treat my body like glass. Very little activity when I can and a lot of water and laying on my left side. So far, these three things and God have gotten us to 22 weeks. We had lost the twins at this point in their pregnancy. So it's been very stressful but very...reassuring?...that we've gotten to this point with zero issues. I go to my doctor once a week for cervix checks and my shot. So far, so good. I actually go today so wish me luck.
Anyways, I really just shared today because it is infant loss awareness month (well pregnancy and infant loss awareness) and being that we've been through both I found it beneficial to myself and possibly others to speak out about the top ten things I've learned and that people should understand about it.
Here goes:
1. I am not this sad, broken person. Please don't feel sorry for us or think we go home every night and cry and live a somber life since loss has hit us. The best medicine for us has been laughter. We are still happy people who had shitty things happen to us. Should you be sensitive? Yes. But don't think I don't want to see baby pictures or hear the news of someone being pregnant with twins because of my loss. I'm not bitter. I want what happened to us to never, ever, ever happen to anyone else. I AM sad for what happened to us but I'm happy for other people's happiness.
2. Don't ever say at least to me. I want to karate chop people when they say this. At least, you have one child. At least, you know you can get pregnant. At least, they didn't suffer. At least, you're pregnant now. Understand this. Nothing. Will. Ever. Take. Away. The. Loss. Of. Our. Children. This baby could not possibly replace them. They are completely different people. Our five year old son cannot be responsible for filling the void of wanting more children. And quite frankly, its not ever anyone's place to determine these things. Don't "at least" a couple going through this, or the loss of infertility, etc. Ever.
3. Hard times reveal true people. Things like this make people uncomfortable, I get it. But mark my words, those that care, will be there for you. Even if they don't know what to say or do, they'll just be. I'm so thankful to certain people who know who they are that just sat there with me during what were probably really awkward moments for them because all I could do was sob. They just sat and that presence, wow, it was the best comfort possible. In the next breath, people who were not there during the difficult times will wonder why you've become closed off in sharing with them. I am not bitter or resentful but I guess more aware of fair weather people. Appreciate the ones who have climbed these mountains of grief WITH you. They are the ones who deserve to celebrate the happy times for you, too. And you owe no explanation, it's respecting yourself. You deserve it.
4. To touch on that last point...you owe no explanation to anyone, about anything. People will judge grief. They'll think you're being rude because you don't feel up to being in groups or sharing things on their terms. You know for the first few months I was scared to even go out in public. I felt like a freak. And I remember going to my first birthday party after and people tip toeing around the awkward "I'm so sorry" or "I was going to send a card but..." or just whatever. Believe it, it was just as awkward for others as it was for me. I didn't even know what to say back. So I made the executive decision to take care of me. If I wanted to talk, I would. Wanted to go out, I would. Wanted to hide, I would. Those who truly support you do not need an explanation.
5. Anxiety. Holy anxiety. I laughed when the doctor told me I was dealing with PTSD. Um, really? He warned me that it could worsen, would worsen. Suggested counseling. He was right. It got bad. I had anxiety about my five year old. If this unheard of thing could happen to me with the twins, anything could happen. I worried about the strangest things. Car rides gave me anxiety, doctor appointments, falls, anything. I was so worried that God would take him, too. It's irrational but I couldn't help it. I wanted to bubble wrap him. Honestly, still dealing with that, but, loss creates fears you never knew you had and the anxiety creates just heart stopping panic. Of course, then a pregnancy after loss, wow. Thank you to everyone who's been my support. I've had a really hard time. Panic attacks before my appointments, preparing for bad news. There was one scare where I had to be monitored for preterm contractions and due to an anterior placenta (didn't know this at the time)...They couldn't find a heartbeat. I thought I was going to just die from anxiety. I get better day by day but I'll be the first to admit this loss has changed me. I was warned I will probably be too protective when she's born and eventually will, hopefully, realize there isn't always something bad over the horizon. God help me, I hope so.
6. Life goes on and it's okay to be happy/sad. It was strange at first feeling happy about anything after losing our babies. You truly feel guilty. It took me months to realize that I can feel immense love and excitement for our life, our pregnancy and still miss my children. I'll have days where I go to a Dr appt and am ecstatic for my daughter's health and that night cry in the shower because I miss my babies and then after I'm rolling laughing with my five year old...there are no rules here. Happiness is okay.
7. Life is a gift. I have always been a grateful person. Having all my freedom taken away to the point of living in a hospital, dependent on everyone else, losing two babies I yearned for after previous loss...all this has made me appreciate the tiniest things. Like being able to watch my son run into school, taking a shower, good coffee...I am just like hell yes, life is a blessing. People who are crabby or complain about stupid things make me want to smack them. Realize what a real difficulty is, and then complain. Even on my worst days, I never complained. I only took in what God gave me and dealt with an optimistic heart.
9. Be present in the moment. My whole pregnancy with the twins I wished it away. Can't wait for this, can't wait for that. Now, I sit on the couch, feeling my baby kick and just embrace it all. It could be gone tomorrow. I know this well. So I embrace it. When my son wants to play one more game, I go that extra step. I may have urged to clean up before and rushed rushed rushed the moment. This isn't promised, none of it. So I embrace the moment.
10. Grief never ends. This is so important to understand. I say goodnight to my Lucy and Liam every single night and I relive the moments we lost them every time. Those emotions never go away. You just learn how to cope. You put the energy into love for them instead of sadness. It's okay for nobody to ever understand your grief. It's your own. Nobody needs to understand it. You don't need to explain it or justify it. It's now a part of you. The beautiful thing is, it can really be a positive trait. My grief has made me kinder, more aware, less judgemental. My grief has made me become involved in prematurity awareness and spreading my story and embracing other moms who have lost. My children both lived for hours, they continue to touch so many lives and only lived for hours. Let that sink in. Grief can be beautiful. If I can comfort one mother, educate another, just be the presence needed for someone to not feel alone...my grief has had a positive outcome. My children are always with me in that. Trust me. I can sense them, every day.
October is national infant loss, pregnancy loss awareness. Remember these babies, their mommies and daddies, sisters and brothers.
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