Friday, December 6, 2013

Have heart

Sometimes music says it better . . . .

Head On
By: Man, Man

There's a knock at your door
You don't even recognize the stranger
It's you from before
Tryin' to warn you all about the dangers
There's a hole in your head
At least that's what everybody's guessing
It's why you're always misread
It's why you sleep but you never feel rested
You never get your rest in

Hold on to your heart
Hold it high above flood waters, 
Hold on to your heart, 
Never let nobody drag it under.
Hold on to your heart
Even when your body's bitter
Hold on to your heeeaaarrrtt
Never let nobody take it over
ever take it over
Ever take it over from you.

There's a call on the phone 
You don't even recognize the number, 
It's an old episode, 
Of trying to put the lightening on the monster,
Of the life you have led, 
That is always a mess
Are you dreaming of death?
Are there ghosts in your chest?
Are you always so restless? Yes you are
Is that hard? 


Is it all a game 
But bait and switch your brains
And follow your leaders to hell
Is it all the same vein of insane, 
As drinking from a poisoned well
And I need new skin for this old skeleton of mine
'Cause this one that I'm in
Has let me down once again
Over time, 
And I need new skin for this old skeleton of mine
'Cause this one that I'm in
Has let me down once again
Over time.

Hold on to your heart
Hold it high above flood waters, 
Hold on to your heart, 
Never let nobody drag it under.
Hold on to your heart
Even when the whole world's bitter
Hold on to your heeeaaarrrtt
Never let nobody take it over
Ever take it over, 
Ever take it over, 
Ever take it over, 
Ever take it over,
Ever take it over from you.

Tuesday, November 5, 2013

Coming up for air: of boobs, body image and a new award

Warning: this post will contain material about babies, breastfeeding woes and postpartum body issues. If you are not in an okay place with your journey, please, please, PLEASE skip this post. As always, there will be others. For now, take care of yourself. And know that it is my firm wish that no matter the road, everyone here finds resolution and happiness after living with infertility/loss.

Two and half months. That's how long it's been since I've found time to sit down at my laptop and actually type out my thoughts. Time has flown by, as has the last few days of summer and we are now firmly in fall here in the Pacific Northwest. As I watch the leaves change, revealing the red and gold that was hidden beneath their summer pigment, I reflect on all that has happened in our little world and how it relates to what's been happening in the community. For the last two and a half months, I've been reading and drafting posts in my head. But since the arrival of the Beats, and with them the onset of sleep deprivation, I've been forced into a new role of being more of a passive observer of the ALI community. Truthfully, it's been strange to be in this new role, with me struggling with feelings of guilt for having abandoned this space. I marvel at those who have recently found resolution who are posting regularly (seriously ladies, how do you do it?), but am also now getting better at acknowledging that my time away has been one that was necessary to my health and for the health of my family.

Tonight, after Grey has been kind enough to allow me an exceptionally long nap, I'm stealing a few moments while the rest of them sleep to give an update. All of this will be expanded upon in future posts, so please forgive the brain dump. But sometimes when one restarts something, it's best to jump in with both feet.

The Beats:
As of today, the Beats are 14 weeks olds (6 weeks age adjusted). And how far they've come. Back in August when we brought them home from the NICU, He-Beat was just under 6 lbs and She-Beat was under 5 lbs. Today, He-Beat is 11 lbs 2 oz while She-Beat is 10 lbs, 11 oz. It's amazing how much these two have changed since they've been home, with them actually looking like babies, chubby cheeks and all. Everyone who is familiar with premies is floored with how much they've grown and with each day that passes they continue to flourish and grow, making eye contact, smiling and interacting regularly now with Grey and me. They also have developed an interest in toys and mirrors, with each of them having a preference for certain objects over others. It's been a lot of fun to watch and not a day goes by where I don't thank the universe for having them be part of our lives

The big thing in our world has been breastfeeding. Or should I say our attempt to get breastfeeding off the ground. Since the Beats were born at 32 weeks and, hence, didn't have the ability to even suck from a bottle, a lot of time and energy was initial placed on making sure they were getting the calories they needed to survive and grow. This meant that up until their due date, Grey and I have been focusing on bottle feeding these two, with me expressing breastmilk following every feed. Though I've been happy to do this in order to feed them, the reality is that they whole process of feeding them, pumping and prepping for the next round takes between 1 1/2-2 hrs. And seeing how the Beats eat every 3-4 hrs, that leaves very little time for anything else.

Because of this, I've been trying to prioritize breastfeeding. While in the NICU I regularly met with the lactation consultants, talking about positioning, latch and even strategies for getting each Beat to the breast. Initially it seemed like the plan we had devised was working, with each Beat getting on the boob almost every other feed. All that changed when I went in for an appointment and learned that She-Beat, even after 20 mins of sucking, was only getting 1-2 ml in a feeding session. When asked what could be done to correct this, I was given a syringe with a NG tube attached and told to have Grey push breast milk in the corner of her mouth while she was at the boob. Needless to say, I left that appointment feeling fairly frustrated.

Here's the thing with breastfeeding: as "natural" as it is, the truth is that for many it requires some work to simply get off the ground. And that's if you're lucky enough to be able to identify the issue AND correct it. Because of this, there are many who will not be able to breastfeed their babies and ultimately will have to turn to formula to feed their children. It goes without saying that this decision is rarely made lightly and usually involves addressing feelings of failure and guilt. But one of the things that always makes it harder is this misconception that not breastfeeding is due to the parent simply being lazy or selfish. Yes, there are cases where it's simply this cut and dry, but those (like always) are rare.

Recently, with the push for breastfeeding, lactation consultants have become more readily available, which is a good thing. The problem is that the model most operate on doesn't work for babies struggling to feed. Granted I'll admit that I have no idea what type of training your average LC goes through, but from what I've witnessed many lack a basic understanding of the mechanics of sucking, leaving them unable to assess if a newborn is actually able to latch properly let alone draw milk from the breast. And it is this lack of understanding that does a disservice to a mother who is struggling to breastfeed as usually they are unable to pinpoint the problem and instead lay the blame for the process not working on the mother. I've seen it too often and, frankly, like dealing with an incompetent physician, only causes more harm than good.

After my last experience with the LCs I was ready to throw in the towel and stick with pumping for feeding the Beats. What changed my mind was when an IRL friend who had also struggled with infertility and then with feeding her son, gave me the contact information for a well-known local LC, Renee Bebee. (Please note, I'm making an exception of sharing real life names in this case as I believe Renee is the reason we've made the progress with have and, thus, I want to spread the word. If you have specific questions, please contact me directly) Upon contacting Renee, she immediately made an appointment to come to my home the following day to observe the Beats during a feeding session, which was something none of the other LCs offered. In addition, when I talked with my friend about her experience, she shared how much she appreciated Renee being open to using formula in order to make sure the newborn is receiving proper nuriousment; a rare consideration as many LCs are so militant about solely using breastmilk. What really separated Renee from the rest is that she spent time examining the Beats, particularly their mouths. And though He-Beat was okay, with us simply needing me to reposition him at the breast to get him to latch better, she discovered that She-Beat had an unusual form of tongue called submucosal tongue tie. I'll write more about this type of tie later and what we've learned about how it has impacted more than just breastfeeding for She-Beat, but what I will say is that getting this resolved would have been next to impossible without Renee's guidance as our pediatricians and the LCs immediately dismissed this possibility and kept trying to convince us that some babies simply lack the ability to breastfeed.

Thankfully, though we've had to fight to get this covered and had to wait to see someone who specializes in clipping this type of tie, it's already proven beneficial to She-Beat as she is now well on her way to breastfeeding without a problem, but resolving the tongue tie has also seemed to resolve her ongoing issues with constipation. Two huge wins for us.

The Body:
In the midst of all of this, Grey and I have been trying to deal with our own ongoing issues. I could write a small novel about all the drama with our condo and a rant about Congress and how thoroughly they've screwed the average scientist is for another post (though I will say that I now have many, MANY colleagues who are going abroad as lack of funding is driving them away). During all of this, Grey and I have both been job hunting. And let's just say that it's been interesting. To date, Grey has had one position disappear after the higher ups decided they couldn't afford the position during the final negotiations, a hand full of positions where he was strongly considered only to be turned away as he wasn't in a position to start immediately, grants applied for disappear (see rant about Congress) and a general tone of "you're an exceptional scientist, but we can't afford you at the moment." On my end things have been better, but that's due to the fact that I have yet to complete my postdoc, making me incredibly cheap to hire. There are some promising things on the horizon, though, with both of us scheming to making sure all the pieces fall into place.

Anyway, while dealing with job hunting and unemployment for me, the other fun bit has been following up on my diagnosis of Antiphospholipid Antibody Syndrome. If you'll remember a while back, about a week before I delivered the Beats I had an ultrasound performed on my liver where they discovered a number of masses. Though believed to be hemangiomas, it was decided that I should have a MRI performed to rule out other possibilities. I've never had an MRI performed, though I am familiar with the equipment. So I naively assumed that outside of dealing with a tight space, I would have an opportunity to catch up on some sleep during the procedure.

Yeah, I clearly didn't know what I was in for.

Needless to say, I now know what an animal shipped in the cargo hold of an airplane feels like. Outside of actively having to calm myself while in the machine because of how tight of a fit it is, I was also traumatized by all the buzzing and beeping the machine made as it took the different images. Just when I thought I had heard every combination, I got a new strange one. Add in the fact that they injected me with a contrast agent, which is a heavy metal that resulted in my developing a massive rash across my chest, and I was fairly messed up for a couple of weeks afterwards.

The good news is that the masses were confirmed to be benign. The bad news is that my current physicians suck. They suck in that they haven't been forthcoming about the results (I've had to ask on three separate occasions for them to let me know what was found) and when asked about their interpretation of the results, they've either ignored me or stared at me blankly. Granted, I'll admit that I'm a bit of a strange patient as I'm usually interested in working with my doctors regarding my care, but this whole experience with them has made Grey and me wonder if this HMO specifically hires physicians and nurses who averaged a 2.0 during their medical training. Unfortunately, we're stuck at the moment with what we've got, but all of this has really affirmed my decision to take my prenatal care out of network as I'm beginning to think that otherwise not only I would currently be 6 feet under and Grey would be navigating the world as a widower but that our precious Beats wouldn't have made it.

At the moment, the plan has been to "wait and see" with me keeping in contact with my MFMs to get a referral to a hepatosurgeon if anything weird comes up. All while I prepare to break-up with another set of doctors.

Needless to say, none of this has helped with some of the body issues I've been facing as of late. While pregnant with the Beats, I easily gained the recommended weight all while following Dr. Luke's guidelines. As I watched the scale climbing, I was able to stave off any anxiety as I knew all of it would be to the benefit of the Beats. Even after I delivered, I was patient as I knew that it would take some time for the weight to come off. All part of pregnancy, was what I reasoned. The problem is, though, that since the MRI the numbers on the scale have started to climb again and I feel very much like I'm in a minority as most women in my position are actually losing weight. And what I believed I would be able to manage simply by breastfeeding is proving to be a losing battle.

Yes, I know that compared to infertility and loss gaining weight postpartum isn't a big deal, but I also know that it depresses me that the misshapen body that I see in the mirror isn't progressing in a direction I'd like it too. Add in that all this extra weight is wreaking my joints and making movement harder and it's a wonder I'm not more stressed.

I'm trying to manage: currently I get the Beats out for walks 2-3 times a week and I've been cutting back on sugar where I can. Still there's a long way to go. Another post for another time.

The Stork Award:
Ending on a positive note, I received notification from Teresa @ Where the *bleep"* is our stork? that I have the honor and privilege of being one of the first bloggers to receive a new blog award she designed, the Stork Award. I absolutely love the theme of this award, being that each of us has our own unique story to tell, not only on this journey but also in life.

How it works:
1. Include the Stork Award icon in your post
2. Link to the person(s) who nominated you
3. Answer the 10 questions about yourself
4. Nominate as many bloggers as you want to receive the award 
5. Ask your nominees 10 new questions 
6. Link your nominees and let them know they've been nominated
7. Post the Stork Award icon on your blog side bar if you are so inclined 

I promise to answer all of Teresa's in a future post, but considering what an amazing honor this is, I felt it was necessary to not only thank her about also to spread the love. I'm limiting myself to 15 bloggers with the hopes that others will have the opportunity to give their own nominations, but there are so many wonderful bloggers out there with their own inspirational stories. So go spread the love.

Here are my nominees for this wonderful award:
And I'm reusing Teresa's questions:
  1. Do you like to plan things out in detail or be spontaneous?
  2. What embarrasses you?
  3. What are some of your favorite websites?
  4. How would you explain your basic life philosophy?
  5. Would you rather be hated or forgotten?
  6. What do you like least about yourself?
  7. Do you have a favorite number? Any particular reason why you like that number?
  8. If you could try out any job for a day, what would you like to try?
  9. If you could go back in history, who would you like to meet?
  10. How are you, really?
As the Beats are officially stirring, that's all for now folks. Many posts within a post and I promise to write more soon. In the meantime, love and light to you all. And may there be happiness and resolution to your journeys soon.

Tuesday, October 15, 2013

Let there be light

There are two ways of spreading light: To be the candle or the mirror that reflects it~ Edith Wharton


Today is Pregnancy and Infant Loss Remembrance Day. Today, like so many of others in this community, I am remember the angels we lost too soon. Though life a year later is so drastically different, the scars left by miscarriage are still very real.

Tonight at 7 pm I am lighting a candle in remembrance of our angels as well as for the angels of dear friends. I will remember the joy that each of them brought to us and thank them for being guardian angels to the Beats. And, like last year, I will allow myself to grieve my body failing them in hope that in my grief I learn to forgive myself for losing them too soon.

To my fellow brothers and sisters who are lighting candles tonight; to those who are tending the wounds and scars created by loss: my heart is with you and your angels. May this wave of light spreading around the world bring all of you peace.

Monday, September 9, 2013

Surviving NICU

I'm sure a number of you are curious as to what's been happening in Grey and Cristy land, specifically an update on the Beats. So before I delve into today's post, wanted to share an update: the Beats are home!! It's been two weeks since the entire family was discharged from the special care nursery (miraculously enough, both Beats were ready to go on the same day), making it a month total that the Beats were in the hospital. The hospital staff still talks with amazement with how well they did and how quickly they progressed during that time. And that car ride home is one that I will never forget. Since being home, we've been focusing on establishing something of a routine, juggling feeding schedules with sleep, cleaning, getting somewhat nutritious meals and keeping the chaos to a dull roar. Needless to say, in the moments that we think we've got it down, a new curveball is thrown our way reminding both of us that there's still so much to learn. But with the failures comes the moments that I will forever treasure, holding fast to those smiles, giggles, looks of wonder and all the milestones.

Since being home from the NICU, I've been thinking a lot about the whole experience. On one end, not really knowing what to expect was somewhat of a benefit as we went in with zero expectations for the entire process. But on the other hand, having some idea of what we were getting ourselves into would have been useful, as it would have attenuated some of the fear and uncertainty. So in the spirit of this other point, I've decided to write a survival guide for the experience. Keep in mind, this post is very much from one person's perspective and the care their babies received (specifically 32 week twins), so an additional advice or corrections would be greatly appreciated in the comments section.

NICU Survival Guide

1) Be open: This is by far the one advantage Grey and I had going into this experience. As I mentioned before, I had zero experience with NICUs prior to the Beats being admitted. Ultimately this turned out to be a good thing for us as it gave me nothing to compare to (which I am highly guilty of doing). Why this was important is that we were blank slates for the nurses and the care team, meaning that it was very easy to teach us how to care for the Beats while they were there. When we were transferred to the special care nursery, though, we found we had to reset our thinking and change our expectations. Luckily someone had warned us ahead of time that things would be drastically different between a level III NICU and a level II, so we were a bit more open. Still, that transition was hard as what I had come to expect wasn't what we were experiencing. And though the Beats progressed, I was only when I excepted that the situation would be different was I able to truly get with the program. My point is keep an open mind. Learn the policies and procedures for the NICU you're in and the care plan for your baby (babies). Don't be afraid to ask questions, but remember that one person's experience will most certainly be different from your own.

2) Integrate yourself with the care team: In other words, make a point of sitting in on rounds. Most NICUs I've heard of give parents this option yet too often many parents chose not to, instead choosing to remain in the dark with their child's care or waiting for the doctor to give them a summary later. I can't emphasize enough why you don't want to do this. Sure, rounds tend to be filled with jargon and it can be intimidating to be sitting with a group of people who have far more education than most of us ever will. But rounds is the time when the entire care team comes together to discuss the health of your child. Meaning that any pertinent information about how they are progressing, changes in their care or even recent hiccups will be discussed there. In addition, by being present, you'll get to know your care team faster. For example: rounds at the university NICU involved two dietitians, the nurse for the shift, the attending physician, the physical therapist/respiration therapist and up to 10 residents. Those residents were the ones who worked with the attending for delivering news about test results, changes in care and even answered questions, so if we hadn't sat in on rounds it's likely we never would have seen the attending physician. Sure, those first couple of days of rounds were intimidating, but it quickly became a time where both Grey and I could ask questions, plans for the day could be solidified and, most importantly, learn who to talk with about different aspects of the Beats' care.

3) Your nurse is your life-line: I can't begin to stress this enough. Outside of the fact that the nurse on duty is the one of the medical team who will probably have the most contact with your child for the day, there's the added benefit that these people are a treasure-trove of knowledge. Think of the world's best nanny with medical experience. Even though Grey and I got to know the physicians very well, it was the nurses that I credit the most for getting the Beats home so quickly and for teaching us a lot of the skills that we're still using at home. Grey actually joked about bringing all of them home with us as it became apparent that I would listen to them without argument. Did I always agree with them? No. But I also learned quickly that there was usually a reason they were doing what they were doing and, hence, it was to our benefit to follow their instruction. In addition, they were a great resource not only for clarifying medical questions/ modifying care (the physicians also listened to them too), but also for transition to the outside world.

4) Get involved: This is a general follow up with integrating yourself with the care team. I can't begin to tell you the number of babies I saw who didn't have parents during their time in the NICU. The nurses were amazing for stepping in and making sure that no infant in their care was neglected, but it was always met with sadness that the parents couldn't be bothered to be there and showed so little interest in their care. Part of this is likely due to the fact that there was a fear of failure/doing more harm than good. After all, your baby is in a fragile state. But it's important to remember that your baby needs you. Even if it doesn't seem like it. Hence it's important to swallow your fear and open yourself to failure and uncertainty. It can start with simply learning how to take your baby's temperature or changing their diaper (not an easy task with all those wires and tubes). It can even mean simply being present and reading to your baby through the isolette. As time goes on, it can mean Kangaroo care, helping with feedings and even learning how to read the monitors. Regardless, make a point of getting involved.

*UPDATE: My Vegas pointed out that I need to clarify this point. I fully recognize that there are parents that are unable to be with their babies on a daily basic. At the university hospital, we encountered parents who came from as far away as Alaska for care and many of them could only stay for a short period of time before having to return. In addition, I met parents who had other children at home and because of work schedules/life were unable to be at the NICU. The thing is, even though these parents weren't always able to be physically present, they were certainly still involved. These parents would call daily, make a point of coming at the end of the day to drop off milk, and even set up a schedule to make the most of the time they did get in the NICU when they visited. This is drastically different from the mother who couldn't be bothered to spent time with her infant because she wanted to go clubbing or was more concern with making sure she got her "congratulatory shots" for having gone through child-birth.

5) Don't live at the NICU: The above said, know that it's equally important not to live at the NICU. This one was hard for me, as I was convinced that if I wasn't there for the Beats 24/7, I was somehow failing them as a mother. I was concerned that I would miss something or not be there when they needed me most. The thing is, what I learned quickly (thanks again to the nurses) was that if I didn't give myself time to heal after my C-section and, equally importantly, didn't take the time I needed for my mental/emotional well-being, I would quickly become a burden to the Beats instead of a help. Leaving the NICU the day I was discharged to go home was so incredibly hard (and required a nurse intervention to get me to do so), but what I found was that by allowing myself to sleep, get my home in order, see friends/family and even get a few moments outside of the Vault allowed me to go back in refreshed, renewed and to be the mother the Beats deserved. So, as tempting as it is to live at the hospital, remember that it's important not to. Your family needs you to be healthy for the road ahead.

6) Celebrate the milestones: This was a valuable lesson I learned from my IVF experience. Yes, the ultimate goal is to bring your child home. But waiting to celebrate for that day is a recipe for unhappiness as it will seem like an eternity. Instead, make a point of celebrating each milestone for your family. For us, this started the day my milk came in. I still remember being in shock about getting hugs and high-fives over the increased production of one of my body fluids (seriously, my cervical mucus didn't get this type of attention). Some milestones we celebrated was the Beats getting their IVs out, getting He-Beat off of CPAP and later Hi-flow, them reaching their birth weights, the day the began the protocol to transition to open cribs, their transition to open cribs (ie "popping the top" of the isolette), them wearing clothes, eating from bottles, etc. You get the idea. Celebrating these milestones gave us hope and helped make the time pass that much faster.

7) Make your space your own: One of the first things I noticed when we entered the Vault was the homemade signs that hung from the door of each patient room. Not to be excluded, the nurses had made signs for the Beats the day they arrived, helping them act as identifiers for each patient. The signs were more than that, though. They became a way to personalize the space for each family, allowing for some sense of normalcy in an otherwise foreign environment. For some, your time in the NICU will be so short that you won't have time to really do much in the lines of personalizing your space. But for those with an extended stay, I really encourage you to ask what you can do. Most NICUs won't allow toys in the isolettes or cribs, but decorating the walls with family photos or pictures, bringing in personal blankets, clothes and even making signs are all things that can be done to make the area fell like an extension of home. Keep in mind anything that you probably don't want to bring in things that are precious or valuable, as it's not uncommon for things to be lost if incorporated into the laundry, but that shouldn't stop you from claiming your space.

8) Be prepared for the emotional crashes: Despite all the good that can come from one's NICU experience, the reality is that having a child in intensive care is a scary and emotionally draining experience. So don't be surprised if in the middle of all the good, you find yourself emotionally crashing. I can't begin to tell the number of times I lost it over seemingly small things. I still remember the day I cried for close to 4 hours after a less-than-minor incident. Not one of my prouder moments. The reality is, there are going to be moments where your world will crash down, so don't fight it or beat yourself up. Instead, do what you need to do to get through. In some cases, it meant calling it an early day and going home. In other cases, Kangaroo Care was the remedy for the situation. Just do what you need to do and don't for a second let anyone make you feel guilty for it.

9) Get support: On that note, know that you are not alone in this experience. Unlike infertility/loss, each NICU will have resources for you to tap into to get support for all aspects of your life. During the 4 weeks we were in the NICU, I spoke regularly with a social worker, met frequently with lactation and PT and even found support from the nurses. But the greatest resource came from the other parents. Prior to leaving the university, Grey and I connected with another couple we met in our twin course who delivered their twin boys just days after us (they were 30 weekers). They ended up following us to the special care nursery and occupied a space next to ours. The staff at the nursery loved the interaction we had with the other family, as we began checking in with their boys and the parents very regularly. In addition to this family, we learned about the parent liaisons, which were a group of parents who had graduated from the NICU who helped other NICU parents navigate the emotional aspects of the journey. Just having someone to talk with who "got it" made all the difference on some days.

10) Be selfish: Years ago, I had an opportunity to attend a talk about patient care for those battling cancer. One of the most shocking parts of the talk was when the speaker emphasized dealing with the emotional baggage of the patient's support system. More times than not, he stated, the patient will end up spending resources managing family members or friends who are struggling with the patient's prognosis. It's never done in a malicious way, but life traumas tend to bring out the worst in some people. Being in NICU won't exempt you from this. I had the unfortunate opportunity to witness this happen during our first days at the NICU, where a MIL was ultimately banded from the NICU after it became clear that her emotional baggage was hindering the parents from being able to care for their newborn son. I still remember the attending marching the dad into the social worker's office and explaining to him that he had to start dealing with the family dysfunction for the sake of his son. The truth is, as hard as it can be, the NICU is not the place for people to work through past traumas or their emotional baggage. Hence you may need to tell people that visiting the patient is not an option. Grey and I were fortunate in this regard as by the time the attending cleared the Beats for visitors they were also being moved to the special care nursery. Even then, we found that we didn't have time to accommodate visitors due to the Beats' schedule. Did I feel guilty? Hell yes! But I also know that if I managed other's needs, our babies would probably still be in the hospital instead of at home with us. So as much as it goes against your nature, don't be afraid to put your needs and your baby (babies) needs above others. And don't be afraid to ask for help in order to do so!!! After all, the goal is to bring them home.

I'll end by saying that by no means are these guidelines hard and fast. Again, this is what worked for us and our children, but each experience is different. Still, I hope that by sharing some of these things others will find a smoother experience. And if there are additional suggestions or clarifications, please feel free to leave them in the comments below.

Sunday, September 8, 2013

Challenging Taboos

Four years ago, while sitting on a balcony in Washington DC, Grey and I began a discussion about expanding our family. I remember the fear surrounding this decision, with Grey voicing his concerns about the gravity of such a decision and me fighting back tears over the fear that we would not even begin the journey because of those concerns. Ultimately, we did come to an agreement and the decision was made that November I would stop birth control and the end of December would be when we would begin the TTC process.

Unbeknown to both of us at the time, that night would mark the beginning of a journey very few talk about openly. That as the months rolled by, we would find ourselves facing a disease that is marred with taboo and misinformation. During that journey, I've had my heart and soul ripped into a million pieces. I've questioned life and its cruelty. And even come face to face with a darkness/bitterness that is truly worse than death.

It wasn't until this last year that I began to see the "benefits" of this life-changing trauma. Faced with the belief that our dream of parenthood was dead, I learned some valuable lessons. I learned I'm stronger than I gave myself credit for. I learned how to find hope in moments of uncertainty and pain. I learned that happiness is a choice and that no one can chose that path for me except myself. I've learned that a full life is not dependent on living according to the formula that so many in society push. That living with infertility and loss does not damn one for eternity and, in a strange way, can actually open the window to wonderful possibilities in life.

And I learned first hand that if I want to destroy the taboos and stigma surrounding infertility and loss, I had to raise my voice and share my story without shame or apology. That by doing so, I could finally cure myself of the bitterness/darkness that had haunted me for so long.

This past May, the theme for NIAW was "Join the Movement." During that week, bloggers from all over the country (and even the world) wrote posts telling their stories and encouraging their readers to raise their voices to help change the conversation about infertility and loss. If you haven't had a chance to read these posts, I recommend you take some time to do so. The theme from each of these is clear though: ALIers are tried of being seen as taboos. And they encouraged all around them to begin challenging the taboos associated with these life-altering traumas.

A few weeks ago, I received an email from Pamela Mahoney Tsigdinos. In her email was an announcement about an upcoming event she is organizing called "The Cycle: Living A Taboo" that addresses publicly the taboos surrounding infertility/loss. Pamela's post as well as Loribeth's post summarize this nicely, so take a minute to go visit and comment. In addition, though, I'm posting the letter that Pamela sent me along with her message.
As many of you know, I'm part of a non-profit event organizing team. We're reaching out to personal networks to ask for help in spreading the word about an unprecedented all-volunteer effort to de-stigmatize infertility. We've created (below)  a proposed letter for those we know to send out or to customize for blog deliver. We're particularly eager to get people in the NYC area to attend, but we also want to expand visibility for the effort largely as we think we can help spark a national dialogue that goes far beyond the event. Please feel free to customize for your respective audiences.
I encourage you all to spread the word. Even if you can't attend the event, making it known is the first step towards change. So take a moment today to do so in your own way. Blog about the forum (and share a comment on Pamela's blog so it be linked to the event website), tweet about it (join or support #TheCycleLivingATaboo) or even simply send a copy of this letter to those closest to you. Regardless, now is the time to challenge the taboos surrounding infertility/loss. Now is the time to raise our voices for change; to begin the discussion that is long overdue.

Dear Friends and Colleagues,
You are receiving this letter for one or all of several reasons: 1) You have been part of my personal history with infertility; 2) You know someone else who's directly impacted, or 3) You have an interest in being part of an unprecedented forum that raises awareness about emotional traumas, including societal impacts, risks and myths associated with infertility, childlessness and fertility treatments.
On Friday, September 27, 2013 , in Lower Manhattan at the BMCC Tribeca Performance Arts Center Theater #2, "The Cycle: Living A Taboo" will convene patients, doctors, authors, filmmakers, and trauma therapists familiar with infertility and treatments for this long overdue public dialogue. The 90-minute program will include dramatic readings, film segments, and intentional conversations about stigma, hype versus hope, and trading losses in for life. The Cycle will be recorded and filmed; segments may be used in a documentary of the same name.
Your presence as part of the audience or your support of this triumphant group is absolutely needed to mark the beginning of societal change in how we universally speak about this once taboo topic.
Event co-producer and documentary filmmaker, Irina Vodar, collaborated with a team of medical and mental health professionals and patients to share their trials and triumphs, and ultimately give birth to a language that supports and offers compassion to those who live this taboo in silence.
"We aim to challenge conventional wisdom and foster a new, more open dialogue about infertility," said Pamela Tsigdinos, co-producer and author of Silent Sorority. "Rather than remain silent, for fear of being shamed or judged, we will give voice to what has been a profoundly misunderstood and misrepresented human experience."
Tickets are $30 through September 20; $40 hereafter. To reserve a ticket, please visit:

Who Should Attend:  People facing a diagnosis of infertility, those who have experienced fertility treatments—whether they succeeded or not––and those who have adopted children are welcome to attend this historic event. Organizers also invite friends and family members of people coping with infertility and those whose loved ones did not become parents after treatments failed. Also welcome are fertility doctors and nurses, representatives from the mental health community, including social workers, psychologists, and psychiatrists, and members of the media who interested in improving how they report on issues linked to this complex health condition.
When: September 27, 2013 at 8:00 pm
BMCC Tribeca Performing Arts Center, Theatre2
199 Chambers between Greenwich and West Street To learn more about the Forum and the documentary, please go to The Cycle: Living A Taboo
On behalf of the Forum team I thank you for your support and presence on Friday, September 27.

Monday, August 12, 2013

Here (part 2)

As stated before, there is a new and special warning for these posts as they will cover more than a birth story. So in addition for anyone who is still on the trenches, if stories about preterm birth or NICU trigger any PTSD, please skip these. As always, there will be other posts. Focus on taking good care of yourself first.

Like oh so many, when I started TTC I naively believed all babies went home with their parents after birth. My thought process went as such: get a positive pregnancy test, wait 9 months, give birth (vaginally or via c-section) and baby goes home. The whole idea that something could happen that would deviate from the norm was never considered (mainly because it was never talked about).

Then infertility hit. And as I began to follow other bloggers, I began to learn the horrible truth about the "norm." I learned that a BFP doesn't equal a take home baby. I learned that the unimaginable could happen in the second trimester and beyond. And I learned about a place that those born too early or born ill could go, where physicians and nurses worked side-by-side with parents to help these kids survive and ultimately go home. And I watched as updates on these moms and kids came in, with me watching them grow and progress.

But what I didn't understand was how heartbreakingly hard it would be to to be a parent of one of these children.

Back in February, when it became very apparent that the insurance-recommended birth center and OB/GYNs were ill equipped to deal with this pregnancy, Grey and I began a search for a hospital and an OB/GYN that could meet the needs of myself and the Beats in case the worst happened. Our goal was simple: find an institution that not only had a care provider who wasn't overwhelmed with managing Antiphospholipid Antibody Syndrome (APS) and a twin pregnancy, but also find an institution that contained a nursery that could provide the Beats with the necessary level of care in case they came early. It was then that I began learning more about neonatal intensive care units (NICUs), their structure and what to expect. 

For those dealing with a high-risk pregnancy, I recommend you take some time researching what level of care your nearest hospital can provide and what that means with respect to the country you live in. In the US, there are 3 levels, ranging from support for late preterm infants (34 weeks gestationally or greater) to very, very preterm infants (24 weeks or greater and in some cases earlier than 24 weeks). Hence it isn't enough to determine whether the closest hospital has a NICU as the level indicates what degree of care that facility can provide for an infant. Meaning that if you give birth to a child that requires more advanced medical care than the hospital provides, you very well could be spending the next few days separated from your child as they've been transported elsewhere for care. For me, I knew all too well the meltdown that would occur if that happened.

Fortunately, the university hospital where my MFM clinic resides also has a level 3 NICU. While touring labor and delivery, I made a point of asking lots of questions about the facility, hoping to gain as much information as possible. What both Grey and I learned was that the facility was new, expertly staffed and well hidden, meaning tours were not given as precautions about infection and disease were at the highest level. As much as we hoped to never visit the facility, knowing it existed and was considered excellent gave me a sense of calm.

Following the birth of the Beats, Grey and the neonatologist teams whisked the Beats off to the NICU to begin their care. Once my c-section was complete, my team transferred me to a gurney to be relocated to a recovery room. Prior to leaving the operating room, my anesthesiologists topped off my epidural with morphine before pulling the catheter, as I wouldn't be able to visit the NICU with it in. Immediately I was warned that this meant I needed to monitor my pain levels, alerting the medical team when the morphine wore off so that I could function.

Once in recovery and following my first sips of water in 12 hrs, I got my first crash course in breastfeeding, with me pumping and hand expressing those first drops of colostrum. Once those were collected in a small syringe, Grey helped the recovery room nurse wheel the gurney out of the room, navigating the hallways to a hidden service elevator. The nurse yanked out a magnetic security card and tapped it against black panel, bringing the elevator to life. Over the next few days, Grey and I would become quite familiar with this elevator, using it to reach this NICU which we affectionately nick-named "the Vault."

Let me cut to the chase and state that the Vault is unlike anything I've read from others about NICUs. Instead of having one central floor with multiple incubators, each infant is given their own room (with the exception being the much sought after twin or triplet rooms). Outside the doors, homemade signs identify each of the patients in addition to a coding card of yellow, orange or red that indicates the level of precaution that needs to be taken within each room. The uniform for the NICU nurses is of brightly colored scrub pants, cross-trainings or Dansko clogs and a colorful satchel that they use to carry a phone that is directly linked to their patients monitor and the central system and what ever other materials they may need during their shift. Instead of a somber mood, the nurses are all cheerful, greeting the parents and anyone new with a smile and compassion. Each nurse, we learned, could have up to 3 babies they were monitoring, all dependent on the degree of care their charges required. To prevent infection in the NICU, a surgical-style sink is positioned at each entrance for visitors to scrub in after performing self-screens (no one who is sick is allowed into the NICU) and a policy of applying a hand sanitizer when entering and exiting a room is strictly enforced. In addition to all of this, parents are allowed access 24 hrs a day with access to one pull-out bed for a parent to spend the night. A sibling program is in place to allow older children the ability to visit their brother or sister and family/friends over the age of 13 yrs are allowed to visit too. The patient rooms are spacious and decorated with warm tones to give a sense of ease, with easy access to breast-pumps and pump kits and mothers being encouraged to pump in the rooms. For premies, any mother who is unable to give her child expressed breast milk (EBM) has access to donor breast milk to feed her child (find more information here). Outside, there is a Japanese style garden, fitting into the theme of calm, clean and simple. In short, this brand-new NICU is state-of-the art and the university is very proud of this facility.

It was within the walls of the Vault that I finally had the opportunity to touch the Beats, study their faces and wonder aloud how something so beautiful could possible have come out of me. For being 32 weekers, it was clear that they were incredibly strong and more than one nurse commented on the size of their umbilical cords indicating that they were well nourished (I owe that one to Dr. Luke). After what seemed like mere seconds, I was taken back up to my assigned recovery room for observation. I urged Grey to stay as She-beat was ready for her first round of kangaroo care, figuring that after the 24 hr watch I would be able to jump right in to helping out.

The next day proved to be one of the most physically painful one I've ever lived through. Despite the warnings at 4 am that the morphine was wearing off (lots and lots of itching), I naively told the nurse that I wanted to start with the lowest dose of pain medication, thinking if I needed more I would simply up the dosage later.

Big mistake.

By the time the morphine had completely worn off, I was past a point of return and clearly disoriented because I wasn't use to what I was feeling. In addition to the searing pain from the incision, I was dealing with what felt like extreme constipation on top of severe bloat. My condition had worsened as expected, with me wondering if my legs would split open from the extreme bloat, but what I hadn't counted on was that my bowel would also be out-of-wack from the surgery, resulting in my whole GI tract stopping completely for the next 2 days. Because of the pain I was unable to spend much time with the Beats those first two days, which lead to extreme feelings of guilt and frustration that resulted in quite a few meltdowns. In my eyes, not only had my body failed my children, kicking them out into the world too soon, but now I was failing them as a mother too.

Thankfully, my doctors and nurses didn't allow me to stay in this state for very long. A prescription of furosemide w/ potassium chloride caused me to start peeing off a lot of the bloat, allowing me to bend over for the first time in a few days. To deal with the irritable bowel, I ingested a wonder drug called Simethicone which alleviated the constant rumbling and discomfort caused by the gas. In addition, I managed to beg my physicians for intravenous iron instead of ferrous sulfate as I didn't want my bowel to snap shut due to severe constipation. All of this on top of daily Miralax, Colace and a nice cocktail of Oxycotin w/ Tylenol got me to a point where I could function again.

Within 3 days of surgery I was ready to be discharged. All with a new diagnosis of HELLP syndrome and a number of physicians who now believed that not only did I have APS but that it really was the reason for the past 3 1/2 yrs of infertility. All I could focus on, though, was that I would be leaving the hospital without the Beats. That I would be leaving my miracle babies behind in the care of strangers. As Grey and I watched other beaming mothers being wheeled out of the postpartum unit holding their newborns, Grey and I walked out hand-in-hand fighting back tears and promised the Beats that we would be back very soon. For all the pain and despair of infertility and loss, the one thing we had both learned was how to be strong during the darkest moments.

Over the past couple of weeks, Grey and I have incorporated ourselves into the daily workings of the Vault. The physicians, residents and nurses have gotten to know us on a more personal basis, with us sitting in on rounds for the Beats and actively participating in their care. I've been very fortunate that my milk has come in so quickly, allowing me to feed them solely EBM for the time being and allowing us the ability to begin working with the lactation consultants to begin their orientation to breastfeeding.

On their end, though the Beats are not the most interesting medical case, they continue to impress the staff with the strides they make on a daily basis. Two weeks after they were born, the were both breathing without assistance, free of IVs with increases in the amounts of their daily feeds and actively gaining weight. It wasn't long before they each had the tops popped on their incubators, transitioning them into open-air cribs. A huge step forward for any premie as they are now able to regulate their core body temperature. After 2 weeks in the Vault, the Beats have graduate to a special nursery where they are focusing on growing, gaining weight and learning how to eat (who knew that remembering to breathe following swallowing was so difficult). Currently they are both learning how to eat from a bottle on top of holding up their heads, moving around and charming all the nurses. For two kids who were asked to grow up incredibly fast, they are not only meeting the challenge but setting a new standard. They inspire me daily to fight for them and be the mother they deserve.

Overall, we've been very lucky. Considering how bad everything got so quickly, I can't begin to imagine what would have happened if we hadn't had the medical staff and personal to make the calls that ultimately got us to where we are today. The truth is, all of this could have ended very badly and the postpartum appointment I had focused solely on the fact that this was not only a near-miss but also what steps needed to be taken to assess the seriousness of this autoimmune disease in regards to my health. But that's another post for another time.

For now, I'm taking each day as it comes. The best part of my day is when I get those few hours of kangaroo care with the Beats, with me holding these sweet babies close and thanking them for coming into my life. The worst part of the day is when I kiss them good night and promise them I will see them in the morning. Though some are quick to insist that having children in the NICU is the most painful thing they've ever had to face, I know all too well that though this part of the journey is hard, it's completely different from the years infertility and loss. That though there are moments where I can't keep my heart from breaking, there are still many moments of hope and joy. 

Sunday, August 4, 2013

Here (part 1)

New and special warning for these posts as they will cover more than a birth story. So in addition for anyone who is still on the trenches, if stories about preterm birth or NICU trigger any PTSD, please skip these. As always, there will be other posts. Focus on taking good care of yourself first.

Grey and I have been going back and forth on what exactly we want to share for the events of the past week. While some have no issues sharing various aspects of their lives, we are both very private people who are also dealing with a lot of family drama. As much as I'd like to believe otherwise, the truth is sharing too much is a dangerous thing for us. All that said, we ask for understanding regarding omitting certain details from our story. Though I understand that this can be frustrating, the reality is it is Grey, myself and the Beats who have to live with the consequences for any information shared.

Let's start from the beginning.

It's been no secret that since the beginning of July I've been battling hypertension and liver function issues. What I haven't been forthwith about is the degree of monitoring my MFMs have been doing since our second trip to L&D that identified this issue. What quickly was becoming baffling/concerning was that though my labs were indicating preeclampsia, I was lacking a lot of the other symptoms. Hence my MFMs were being vigilant, warning me that things could quickly escalate.

And this is where I failed. Even with the warning of packing a hospital bag, I wasn't prepared for how fast all of this could progress.

Wednesday July 25th, I awoke with a start realizing I had overslept and was running late for my weekly appointment. Because of some issues with iCal, Grey overslept too and wasn't able to get ready in time to get out the door. As I kissed him goodbye, I looked him in the eyes and assured him that this was just a routine appointment and that I would be home by 10 am.

Following a long wait at Phlebotomy, I raced over to my MFM appointment to start the day with a NST with Nurse J before meeting with the physicians. During the NST, the Beats were rocking, kicking and jumping around, but my blood pressure was far from good, spiking at 134/82. Though not considered in the range of hypertension, it still caused all of us to pause. When the NST was completed, I was taken back to the exam room and my blood pressure was rechecked. Though lower at this point, it was concerning that it was fluctuating as much as it was. Despite this, I figured we were still in the monitoring mode as I had been experiencing similar trends before. What I wasn't prepared for was that the labs would come back indicating that not only were the markers for liver stress skyrocketing, but so were markers indicating kidney stress. And just like that, a bed was booked for me at Chateau L&D.

Following the appointment, I was given 30 minutes to wander down to the hospital cafeteria to eat some breakfast and begin making plans. I learned later that the second I texted Grey the news, he immediately packed our laptops and proceeded to run to the bus stop that was 10 blocks away. In the meantime, I made arrangements for Jaxson and Daisy to be watched and alert those we knew in the area of what was happening. I still remember the texts from MissC simply stating "call me," with her trying to piece together what had happened within the 24 hrs since I saw her and Cooper. After all, I looked healthy. What had gone wrong?

Following breakfast, it was back to the clinic to receive the first of 2 shots of dexamethasone to promote maturation of the Beats's lungs. While there, a new nurse named Nurse T talked me through tentative plan of getting me into a flex room where they could start magnesium sulfate in hopes of bringing my blood pressure down. Though usually used to delay preterm labor, magnesium sulfate is also effective at treating this aspect of preeclampsia. The first 20 minutes of that medication were the worst, with the veins in my arm burning from the initial bolus, but after that it was manageable, feeling like I was lying on a bed of hot coals. In addition, I was prescribed restricted bedrest, all with the hope of keeping the Beats in utero as long as possible.

At 12:50 pm I was wheeled into what would be my new home for the next few days. Grey and I started marking the course of events with the different nurses who were assigned to us as the hours became a blur and it was hard to distinguish when exactly certain events happened. Each nurse we had during this period was amazing in her own way, ranging from wicked senses of dry humor to being incredibly sweet. It was funny how each one came into being in charge of my care during the moments we needed them most, helping us make decisions about the next steps, giving us reasons to laugh and even helping us encounter the unknown.

By Friday afternoon it became clear that the Beats would be delivered prior to the 36 week mark, but Grey were hoping that we could get them a few more days. By that evening, though, we were told that I needed to prepare for the possibility of a C-section in the morning. Grey and I held tight to one another as we met with one of the neonatologists to talk about the realities of raising 32 week twins and what their time in the NICU would look like. It was during the rare few moments we were alone together that I allowed to tears to come. Despite the fact their outlook was potentially positive, the reality was that things could go very wrong and I was overcome with guilt, anger and sadness that my body was once again failing our children.

At 1 am I was awoken by our nighttime nurse and told I needed to stop all liquids as it was very likely I would be going in for surgery in the morning. As she gave me the rundown of what to expect, she could see I was in shock by the news. To calm me, she sat by me and proceeded to tell me about all the craziness that was currently happening in L&D. Apparently the floor was beyond capacity, with only those who were actively laboring or in an emergency situation not being turned away. I'll admit, we both had a good laugh about the woman who refused to leave after getting this news and instead had been pacing the halls for close to 10 hrs hoping to get her body into that final stage of labor. "We keep telling her that home will be more comfortable, but she refuses to believe us!" she exclaimed. We also talked a bit about the different cases the university hospital sees, as it serves a large population ranging from prisoners to well-educated citizens with each case also ranging from being very straight-forward to incredibly complex to a flat out emergency. Before she left me she told me that though I was in serious condition, we were actually in a good spot as the doctors had had time to plan and prepare. And she commended me and Grey for being so active to setting the stage to allow for the best possible outcome. It was those words that allowed me to sleep for the next 5 hrs. It was those words that I would hold on to for the next 5 days.

At 7 am my primary MFM came into the room with a team of residents and told us that I was going to be prepped for surgery at 10:30 am. In addition to my liver and kidney biomarkers still being on the rise, my blood pressure was now officially in the hypertension range, I had gained 20 lbs in 48 hrs due to an accumulation of fluids and that my fuzzy thought processes were worrisoome. It was then I was diagnosed with an atypical form of preeclampsia called HELLP syndrome. Though I had zero protein in my urine (they had done a 24 hr catch) and my platelet count was okay, they weren't willing to wait. After answering a few questions from Grey, the decision was made to go forward and the team left us to make final phone calls to family and friends to alert them to what was happening. Grey was also given some pink scrubs to wear in the OR as the usual blue ones were being stolen and they wanted to discourage future temptations.

At 10:30 am, I was given an additional IV and then wheeled into the OR. Sitting on the OR table, a 38.5 week pregnant anesthesiology resident attempted to insert an epidural without success. The attending anesthesiologist proceeded to take over and while successfully inserting the catheter told me about how he was actually on paternity leave and had just welcomed a son 10 days before. The only thing I could think of was that this situation was an infertile's worst nightmare come true, but somehow I managed to bite my tongue and allow them to do their jobs while I smiled.

Grey and I had talked previously about what we wanted to happen if a C-section was necessary for delivering the Beats. I knew I didn't want my arms strapped down, but as I have a history of fainting from overly bloody/painful looking situations I was also okay with them leaving up the drape. Grey wanted to see though and the surgical team happily accommodated him, only requesting that he not interfere with what they were doing. Numb and nude from the neck down, everyone began to work with me only feeling tugging and pulling the whole time. Suddenly I heard excitement in everyone's voices and Grey's eyes began to fill with tears. Eagerly snapping photos and bouncing like a small child, Grey looked at me and said "He's crying. Cristy he's crying!" meaning that Beat A was able to breathe on his own. Within a couple minutes later the same excitement and tears of joy returned with the arrival of Beat B.

Born on July 27, 2013 at 11:20 am PST, via Cesarean section

Beat A (He-Beat): HTC. Weighing 4 lbs 5 oz
Beat B (She-Beat): EMC. Weighing 3 lbs 7 oz

Both born into the world with an amazing set of lungs. The most beautiful noise I've ever heard.

As agreed upon, Grey left me to be with the Beats and oversee what the neonatology teams were doing. The original plan was once prepped for NICU, the team would bring each Beat over for me to see before taking them down. That plan was immediately scratched when I heard a loud clang and a gasp. Within a couple of minutes I learned that one of the scrub techs had fainted, nose-diving into one of the side tables. As the team split, with a couple of nurses working to assess the situation and call a team to get her down to the ER while another nurse stepped in to assist the MFMs with completing my surgery, the NICU teams made the decision to bypass me seeing the Beats and to simply get them into NICU. Grey came over to me with a look of what-do-you-want-me-to-do, and the second I mouthed "Go" he turned and joined the NICU teams. About an hour later, I was sewn back together and transferred into a L&D room for close monitoring and observation. Over words of congratulations, my primary MFM warned me that it was likely my condition would worsen before it got better. "But we're not going to let anything happen to you" she promised.

And with that began a strange next few days, fueled by physical pain and uncertainty coupled with joy and hope.

To be continued . . . .

Friday, July 26, 2013

Failing miserably

Another quick update as I currently restricted to a hospital bed. Please forgive the lack of sensitivity, but I don't know when I'll be able to post next.

Here's the rundown. I've gone from suspected preeclampsia to rapidly progressing to preeclampsia. Liver and kidney levels are crappy as ever and my blood pressure has jumped significantly. Add in severe bloating in the legs and mild headaches and the result has been a guaranteed hospital stay until the end of this pregnancy. To counter all of this, they started me on magnesium sulfate. I'm sure there are many out there that can share their horror stories with this drug, but needless to say it's not a fun one. More on the specifics at another time.

On the flip side, the Beats are doing amazing. They had a growth scan a week earlier than originally planned and they are not only developing well but measuring ahead. He-beat is 4 lbs 8 oz, while She-beat is 4 lbs 5 oz. This puts them in the 63-68% compared to singletons. The doctors have been very impressed. Only concern with them at the moment is She-beat's heart rate dips when I use the bathroom, but she's been doing better. Unbelievably proud of these little fighters.

What all this means is it's likely that the Beats will arrive in the next few days. As much as they are rocking all of this, my body is failing miserably. Today Grey and I signed a living will as well as power of attorney for me in case my body continues to crash. Granted we both have long agreed on how to proceed if the worst happens, but there were still tears when faced with the reality of all of this. Also, there's the added fact that the one goal I was holding onto during this entire pregnancy, which was getting them to at least 36 weeks, is pretty much gone. Still, now is not the time to grieve the loss of wants. Now is the time to utilize the resources, support and love that is currently surrounding us through not only this amazing care team but also from family, dear friends and this community.

Thank you all for your support, well wishes and prayers. We'll update you when we can.

Thursday, July 25, 2013


Tapping this out on an iPhone, so this will be short.

Been admitted to the hospital for monitoring due to preeclampsia. Luckily we've caught it early, but we've also been warned that the Beats may be delivered via C-section sooner than later. Needless to say, I'm terrified. The Beats need longer to grow and develop. After all the hell from the past three years, the universe owes me this one.

Please keep us in your thoughts. Somehow we need to get through this.

Tuesday, July 23, 2013


Greetings to everyone here from ICLW. It's been a long while since I participated, so bear with me as I reacclimate to the process. For more details about our journey, you can visit the TTC tab, but here's a not-so-brief summary of the past few years: 

Tossed BCPs in 2010 and began the roller-coaster that is TTC (and am now throughly convinced that Valium should be included with all prenatal vitamins, OPKs, BBTs, HPTs, etc). Diagnosed with unexplained infertility in 2011 and began 3 rounds of Clomid + IUIs in the summer of 2011, all of which were BFNs. Our REs immediately recommended IVF and we went through our first round in December 2011. Exited 2011 with a BFP and hope for the future, woke up on Jan. 1, 2012 to learn something was wrong. Diagnosed with a blighted ovum on Jan 11 and underwent a D&C. First FET was March 2012, which resulted in a BFP and increasingly high betas. A few days later, started to bleed and cramping, despite betas climbing. Our April Fool's day present was a diagnosis of a completed miscarriage and an explanation of "bad luck." FET #2 was in June 2012 which resulted in a BFN and me completely losing faith in the process. Stopped treatments with the intention of pursuing adoption. After lots of research and finding an agency, we learned that no agency would work with us as there was the possibility we would be moving within a year. Also told that "we were young and had time." Cue more grieving and finding a marriage counselor to help my husband Grey and I handle the emotional backdraft. Began researching living as a family of two (aka childfree living) and healing our marriage.

July 2012, met up with a good friend (Jay @ who works for Fertility Authority for lunch, which turns into a very candid discussion. She offers to have FA review our case and see if they can find another RE for a second opinion. After much internal debate, I agree and within a week have an appointment with a new RE. New RE decides that given my history, doing a RPL panel would be useful. October 2012 we receive a possible explanation for all our years of heartache: I get a tentative diagnosis of Antiphospholipid Antibody Syndrome. New RE pitches new treatment plan and after much more internal debate, meltdowns and literally cursing the universe, Grey and I agree for one final FET with our last two embryos. Following many months of intense therapy and oodles of support from people in this community we transferred two hatching embryos on Jan 2, 2013. Today I am just shy of 32 weeks pregnant with our miracle twins, the SugarBeats.

Grief. Defined as a multifaceted response to loss that has emotional, physical, cognitive, behavioral and even philosophical dimensions. Grief is something that our society is ill-equipped at dealing with, with the modern age pressuring its citizens to push off what minimal social customs we have to deal with it in favor of ignoring the issue at hand. Hence, actually dealing with grief requires time, energy and whole hell of a lot of help.

Back in 2010, I began to explore the different aspects of grief as I was dealing with therapists who where having extreme difficulty in understand why each BFN was leading to a meltdown (side-note: it's for this reason that I sincerely believe that anyone living with infertility/loss needs to find a therapist who specializes in these issues as most therapists are utterly worthless if not down-right destructive to the person dealing with this life trauma. RESOLVE has a fantastic directory of professionals who specialize in mental health and infertility/RPL). It wasn't long before I stumbled upon the Kubler-Ross model, commonly known as "the 5 stages of grief." The whole premise of the model is simple: when a person faces the reality of a life trauma, be it impeding death, morality or other awful fate, they will experience a series of emotional stages: denial/shock, anger, bargaining, depression and acceptance. The amount of time one can spend in each of these stages varies, with some quickly skipping through one stage while spending a great deal of time in another. Also these stages are not linear, allowing for a person to cycle back. For me personally, I spent a lot of time emotionally swinging between anger and depression while I flew through denial/shock and bargaining. Hence I've been a pretty pissed off individual during this journey and anger/despair has been a continual theme of therapy.

The stage I didn't start to explore until last summer was acceptance. For 6 months, I read, analyzed and struggled with acceptance of infertility and our losses. There were many meltdowns that happened during this time, with days where I truly wondered if I would come apart at the seams. But I also knew that I was long overdue with this part of the process. And so I worked hard to confront the Jabberwocky in my life and finally came to the realization that in order to be at peace, I needed to stop fighting everything around me.

And then, I stopped. Partly because I thought I had achieved my goal. Partly because I found myself in an unexpected place with a pregnancy that was progressing. Instead I did the thing many infertiles and RPLers do and began mentally checking off the days to each milestone. I braced myself for the worse to happen and tried to live each moment of this experience out of fear that it could easily be gone at any moment.

It wasn't hard to be this way as I had encouragement from the outside world. For the first time in 3 years, people were no longer afraid to reach out and support us. But what was unspoken was this assumption that it was safe to do so because we were finally cured of our infertility. That with this pregnancy progressing, not only would there be babies to "oh" and "ah" over, but that the scars and the pain would magically be washed away.

There's a hard truth with dealing with infertility/RPL that so many struggle to accept, mainly because it seems to counter-intuitive to the journey. It's a truth that seems unnatural and goes against the longing we feel in our hearts. It's a truth that until last summer would have brought fresh tears to my eyes, causing me to rage and I would have been the first to reject.

The truth is carrying a pregnancy to term will not cure you of infertility or loss. That despite the fact that we struggle so hard to achieve this one goal, thus overcoming the physical definition of infertility, healing does not come simply by bringing home a baby.

I know what you're thinking: isn't that the whole point of fertility treatments? Isn't this why so many suffer through the medications, the physical discomforts and even allow themselves to hope for a future of holding their children? The problem with this assumption is that it sticks the burden of healing directly on the child instead of forcing the individual who has lived through the trauma to confront their grief. It's also part of a bigger issue in our society, where the idea that having a baby is to cure all the other aliments of life, such as chronic unhappiness, repairing/salvaging a marriage/relationship, giving someone a purpose or even allowing someone to finally feel loved. Though it is a natural assumption that pregnancy will heal infertility/loss, it's one that ultimate inhibits healing. I can't begin to tell you the number stories I've heard from ALIers who are parenting who still feel resentment and acute pain following a pregnancy announcement. Those that talk about strife in their relationship despite finally parenting. Those that still have panic attacks over losses that happened years ago or feel a strong sense that they are still somehow unworthy.

During my time exploring the adoption and "childfree" living literature, I found that this issue was tackled directly and productively. Hence, though these routes are not the way the majority of us on this road will resolve, there is an advantage to these paths of resolution as working through grief and ultimately acceptance is key in order to be successful. Sadly, it's something that I think is also easily ignored for anyone resolving through pregnancy after infertility/loss.

All of this came to a head for me this past week. Last week, after Grey had a long discussion with Lucas about my anger towards him, the letter that David, Grey and I have been working on was sent out. To his credit, Lucas sent an incredibly thoughtful and controlled response instead of simply shooting back a nasty email. He has anger too over the last few years and it's clear that we both have a lot of work ahead of us mending this bridge. But what got to me was his final sentence.
Finally, leaving these issues aside, my wife and I want you to know that we are very happy and excited for you and Grey, and the two little one that are about to arrive.
And with that well-intentioned and sincere sentence, I found myself hyperventilating and fighting a powerful and primal urge to run away from everyone and everything in the world. To simply disappear with the Beats.

Dee and I had a long, tearful conversation about this yesterday, during which time it became incredibly clear that I still haven't finished this last part of the grieving process. Granted I fully accept that I though I will forever identify as being infertile that life will still be okay, but what I haven't done is detach the trauma from the Beats. To take the necessary steps to ensure that dysfunctional patterns will cease with me so that they can truly live their lives unburdened and free.

Today, I'm mustering the courage to confront the Jabberwocky. To look it dead in the eyes and actually understand why I am so afraid. Part of this process involves me actually giving in to a good friend who really wants to throw a baby shower. Part of it involves me setting aside my pride and admitting that Grey and I desperately need help. And the other part involves responding to Lucas's letter, taking the time and care to acknowledge how my past actions and behaviors have lead us to the standoff we are at today. But the biggest part is also no longer allowing the fear of acceptance to prevent me from embracing it. To finally give in to all that has happened and allowing healing to final be completed.

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