Pregnancy after PPCM--Part 1

After I recovered; got my diet down; exercise routine down; and my cardiologist, therapist, primary care manager (PCM), and perinatologist (high risk OB) all to give me a green light on trying to conceive once again, the IUD was removed and on August 2009 we were ready to go! Unfortunately things did could not happen fast enough for us. I had a very negative view of pregnancy b/c of my first (and so far only) experience. To me pregnancy was uncomfortable, dangerous, scary, and warped my body in ways that I never thought possible, so I just wanted it to be like a band-aid: to come, and go quickly, "just rip it off" type of thing. I used to cringe at the thought of being pregnant again...but I wanted a baby, what's more is I wanted a baby that was half my hubby and half me.
People often ask me why I would risk my life again. It's simple in my mind, I LOVE my husband, I think he's a wonderful human being and if I can make someone that is part of him, if future generations can have part of him then I've done a REALLY good thing. Corny, I know but it's true.
So we started trying and failing...at least failure was what I felt every time I got my period. What was worst was that my daughter's second angelversary was fast approaching and I couldn't help but feel like maybe I didn't deserve to be a mom, maybe being totally happy was an impossibility. As the months passed a dove deeper and deeper into a new depression and I felt like I was trying to swim with cement shoes on because I knew that depression was not going to speed up the process.
During these trying months I kept a journal since I didn't want to make my journey public just yet and now I'll share my journal entries with you all....

September 8, 2009
I got my period today. Even though it was one day late I wasn't disappointed. It's funny how sometimes you just know. I knew it wasn't my month. Still there's that little shade of what wants to be hope waiting on the sidelines waiting to make the change.
Once that shadow of the desire of hope is smudged out of existence comes the fear and pressure from the time crunch. I am now 28 and as my new OB put it "if we're going to do this, the faster [I] get pregnant, the safer it will be for all involved." According to the little bit of research that exists on the subject the risk for PPCM goes up with pregnancy after the age of 30. Not to mention that the chances of multiple pregnancies goes up shortly after the age of 30 as well which can also increase the chance of PPCM.
My rational side tells me that it's not likely that it will take us a year to get pregnant (much less 2). Sadly, hormones and rational thinking are not BFFs so I know that each month I have to deal with PMS I know I will have to deal with these irrational fears. So here's hoping that there are not many PMS weeks in my near future!


Thanks to the tons of therapy I knew myself well enough to know that if this didn't work quickly I was going to have to deal with all sorts of irrational fears. Unfortunately being aware of them doesn't make them less frightening. Beyond that I had to deal with external fears. My family was just as scared (if not more) scared than I was and it's really hard to keep a positive outlook on things when people you love are still questioning your decisions. My hubby seemed like he was the only one in my corner for a while and I was afraid of even telling our family we were trying (tho everyone had their suspicions). A pregnancy was going to be simply impossible to keep a secret despite the fact that we live in a different state than our family, but we are still too close. So I had to prepare my family for my (hopefully) fast approaching pregnancy and find a way to deal with those irrational fears of my own...and so my trip down Mommy Lane just kept getting more complicated by the month!

to be continued...

What does it take?--Part 8 (Final)

And so now you know everything I had to do to get all the doctors going in the right direction, what I've gone thru and how it affected. And now what? Well, now we try the whole 'we're having a baby!' thing again. Easy enough right? Funny, kids don't come right when you want them...so that was a journey all on its own! And so the beginning of a new journey on my trip down Mommy Lane begins...trying to get pregnant!

What does it take?--Part 7

In mid July of 2009 I finally got to meet the perinatologist (high risk OB) and she reacted as most doctors usually react when they meet me. She asked me about my condition and how it's affected me personally. I told her how I was lucky enough to have recovered and unlucky enough to not have my daughter, and how we wanted to try again. She went on this long rant about how I was not treasuring my life enough and how I shouldn't gamble it away on another pregnancy. She kept talking to my husband about whether he was ready to raise a child on his own and since they would probably have to deliver early that it would probably end up being a special needs child. She didn't tell us anything we hadn't already read about or considered but having it thrown in our faces had me feeling distraught to say the least. We told her it wasn't a decision we had made lightly, we had considered the risks and consequences for nearly two years and that we felt that considering my particular statistics the chance of relapse was somewhere between 2-10%, that according to the cardiologists we had seen and consulted with (one being one of the leading cardiologists in the field) that my body should be able to take a full term pregnancy provided I continue doing exercise (as my body dictated); continue my low sodium, low fat, low cholesterol diet; and I am monitored very closely. She still seemed hesitant but told me that if our mind was set then we needed to get pregnant as soon as possible since I was so close to my 30th birthday, because once I hit 30 my chances of relapse go up as well as chances of other complications. We agreed with her, we told her that we were well aware of the time crunch and that was why we had gone to see her.
After I left I felt awful, I felt selfish and like maybe we had made the wrong decision. My husband held me while I cried and reassured me that everything will be fine. Then he asked me the one question that cemented our decision...what is the worst that could happen? My answer was simple as far as I was concerned:
Well, I know that I won't die, I can take this! Worst case scenario I end up relapsing, but since everyone is keeping a close eye on me I don't think I can get bad enough to where I would need a transplant. But our baby...I was not willing to consider the worst, worst case scenario...loosing him...b/c we were not going to settle for that again! But he could end up being born early...too early and that scares me. He could end up in the NICU and be special needs.
My hubs asked if we could handle a special needs kid, the answer again was plain to see...
Yes! We know a few little miracles that were born very early, and they all have grown to be very normal kids, yes they had rough starts, and their parents nearly lost their minds watching their little ones in the NICU but they all made it through and they all tell me that those tough times seem like such a long time ago and they are overshadowed by their kids' accomplishments and milestones.
We talked about that for a long time and he said "Ok, so we know we can deal with the worst case scenario, but what if we don't do it? You are completely recovered don't have to take any meds, and can lead a completely normal life, what if we don't do it?" I told him "Well, we'll always be wondering about the what ifs" he asked if we could deal with that, and we agreed that we could not, so with that our decision was made and we were not going back! We were going to start trying to conceive our second (and last) child.
And after two and a half of the longest years of my life, I had finally reached another milestone in my trip down Mommy Lane.

To be continued...

What does it take?--Part 6

I've mentioned my therapist before but I don't think I've ever really talked about him. Since the day I woke up in the ICU medical professionals had been trying to diagnose me with post-partum depression, or just plain depression and have tried shoving pills down my throat or sending me to a support group. But in all honesty, when it comes to getting help it's only good when you are ready to accept it. When we moved it took a big toll on me and my husband and I dipped into an even bigger depression than I had before, my heart seemed to be under control and I now had to face the loss that we had suffered. I would have nightmares of waking up in the ICU and holding my lifeless child, I would be doing everyday things like shopping and have a flashback so real that I swore I was still living those early days and only dreaming of a less painful future. Of course those flashbacks would result in a horrible panic attack where I would have trouble breathing, I would start hyperventilating and would curl up in a ball and be unable to move from there. Eventually it all became too much to bare, what was worst is that I could see how much it would hurt my husband to see me go through these and not be able to fix me. So I went to my primary care manager (PCM) and asked for a referral to a therapist. I told him what I was going thru and told him I was ready to talk to someone about it.
A few days later, I met my therapist. I was overwhelmed by just how much stuff I had been holding in. It was an amazing experience to be able to talk to someone who had no stake in my situation, that wasn't affected by tears, someone who I could drop the mask for and I could just be as I felt at the time...broken. I realized that I had been too preoccupied with helping my family not hurt that I hadn't allowed myself to heal and the cut my soul had encountered had festered. That I had allowed the doctor that had neglected me to break me and that I was no longer the strong, independent woman I had always seen myself as. Slowly, we worked thru my pain and my fear and after each session I would recap it to my faithful husband who would always take some time off work to be there for me if I needed it and surprisingly it helped him too. And slowly we began to heal. That doesn't mean that it no longer hurts, I think it's always going to hurt. But it's manageable pain, I can now reserve time to cry if I need it and I know why I'm crying (which is so important). I can also allow myself to be happy without feeling guilty or out of place while doing it. All of this is thanks to my therapist. When I went to him to let him know that my cardio had given me the all-clear for having another baby he was beyond excited for me (no longer completely detached from my situation)and he was able to prepare me for what I could possibly feel as I tried to conceive, and when I got pregnant. And I still see him for "maintenance" lol.

The next step was to get a referral to a perinatologist (high risk OB) and that was an adventure in and of it's own. I felt like a hurdle jumper! I had to see my PCM (where all military referrals start!), then I had to go to a bigger military hospital to see an OB to get my annual exam and push the referral further, and after 3 months I finally got a referral....to a doctor that is no longer in the area lol, so I had to research local doctors then call my insurance to change the provider and I had finally set an appointment to meet up with the peri and see if she would take my case. And that was just another millions stepping stones on my trip down Mommy Lane...

to be continued...

Pregnancy Update! 18 Wks

OK so the last time I did a real-time update I told you all that I am pregnant. Well today I am officially half way down my journey! Since I have to have a planned c-section and since last time I was pregnant I went into congestive heart failure at 37wks my OB and I have decided that the best preventive route would be to deliver at 36wks, and today I am officially 18wks!! My last cardiology appointment (on the 2nd of this month) went great! I had my 2nd trimester echocardiogram and it showed that my ejection fraction (EF) was 66% well above the borderline "normal" of 55% and my heart was measuring all normal so I don't have to see him until July (just before delivery!) which is a REALLY good sign. My OB appointment went equally well I got the all-clear to go swimming instead of boring myself with walking everyday and we found out that the Bean is a BOY!!!
People ask me how I feel about having a boy after having lost our little girl. To be honest I feel relieved, the entire time I didn't know what he was I honestly thought I didn't care. However, now that I know he's a boy I find it a relief. I feel like had he been a girl I would have a higher chance of feeling more anxiety towards the end, that's not to guarantee I won't, not to mention I realized that I would have felt like I was holding my breath for the rest of her life, hoping and praying that she didn't get PPCM. Considering the research on PPCM is very limited and it's still not entirely clear wether PPCM is genetic or not I would have been scared.
So overall I'm doing really well!! I've gained about 2lbs so far and all within the second trimester (just like it's supposed to happen), I don't have any swelling, no shortness of breath--tho I have horrible allergies! And most importantly my little guy is doing great!
I'm on top of the world on my trip down Mommy Lane :)

What does it take--Part 5

After 4 months we moved states. Talk about tough!! We had to acclimate to a new culture, new weather patterns, and new elevation. Not to mention I had to make sure I had all my ducks in a row (pick up copies of my medical records, set up new doctors, and make sure our move went smoothly administrative wise). It was a nice distraction and I was looking forward to the move, the truth is OKC had never really been the ideal place for this little TX girl and after loosing my daughter I hated everything about it. Everything but my cardiologist! I was really nervous about having to find a new cardiologist.

When we arrived in our new home in New Mexico we were surprised at the giant house we had gotten. We were surprised at how remote it was, and we were surprised that our cell phones didn't work! The scenery however was beautiful!!! I hadn't lived by mountains since I was very little in Mexico and I loved looking at something other than flat, barren land. The house was beautiful and it was the first time in our married life that we had gotten placed in a single family home vs an apartment. I had set this house up months in advance, before everything happened, so it was tough looking at it without picturing Michelle's stuff all over the place. The fact that we had very little furniture at the time didn't help the situation. Once we got settled and I didn't have anything else to occupy me I dipped into depression once again. To add to that I noticed I was feeling short of breath very quickly and didn't know why this was happening. I began having panic attacks, one was bad enough that I went to the ER they have here (a tiny room with ill-equiped staff) where the nurse on duty told me that I was merely having a panic attack and that I needed to calm down. Once I made them give me an EKG (b/c I was not leaving without proof that I was not having a heart attack!) I went home and the next morning I made an appointment to see a PCM (primary care manager). Since the PCM wasn't available for a week or so and I needed refills I went into the clinic and they were able to set me up with my refills and I asked what I had to do to get a referral for a cardiologist, the doctor on duty told me that he was the "cardiologist equivalent" and that he'd be happy to consult me, I told him thanks but no thanks and insisted on a referral. I should inform you that I am an Air Force wife, in an different branch post...in the middle of no where. Needless to say...tough times! But more on this later....when I met my new PCM I told him about the panic attacks I had been having, and about the shortness of breath (which by this time was beginning to get better). He told me I had experienced something called "elevation sickness" and that it was very common in this area...can we say BIG sigh of relief!?! And he agreed that I was indeed having panic attacks and I was in a deep depression which of course was understandable. He strongly suggested seeing a therapist and maybe taking anti-depressants. Well I was on enough pills so I took the first option.

A few weeks later I went to go see a therapist for the first time in my life. It's helped me a lot, 2 years later I still see him. I feel like it's good to have that kind of person in your life someone that will listen to your problems no matter how petty and will help you reflect on them. I highly recommend it! Slowly with a lot of work and some wonderful advice from my therapist I was able to dig myself out of the dark hole I was in and focus on having a fulfilling life, not one stuck in the past.

As for the cardiologist situation: after lots of advocating on my behalf I was referred to a bigger military hospital where I saw a military cardiologist...well saw is such a hard word to use. You see, my cardiologist had this useless secretary that would never be able to schedule me for an appointment (I called her "the Gatekeeper") in the 10 months or so he was my cardiologist I was able to see him 2 times after months of trying to see him. With the goals I had in mind this arrangement was not going to do, so I got a referral for a civilian cardiologist (which I got to pick!). This of course didn't come without a lot of work on my behalf and my PCM's.

Selecting my cardiologist was a little difficult I didn't want to have to change again, so I googled to my little (big) heart's content. I found a doctor that had studied at several prestigious hospitals (Mayo clinic included) I scheduled an appointment and printed out all the info I could find on PPCM for him to study if he wasn't familiar with it. When my appointment came I took all that research I had done and went to meet the new cardiologist. The first question out of my mouth was "how much do you know about PPCM?" he looked at me with a puzzled look and said "actually I know quite a bit, I studied at the Mayo clinic under a doctor that was studying it when it first became an actual diagnosis, I've treated a good handful of women with PPCM...is that what you have?" after sending a quick 'thank you!!!!' to God or whoever was looking out for me that day I told him my story. He immediately browsed my file then sent me for an echo and full spectrum of blood work. A couple of weeks later I saw him again and found out my EF (ejection fraction) had gone up again! Now it was at 73%! And since I had been on the meds for a year and a half I was now eligible to start weening off the meds. He also didn't think I was a nut job for wanting to have another shot at motherhood which made me very happy!

Weening off the meds was a long process, he wanted to be careful and ween me off slowly while increasing my cardio activity. He told me to start adding a little more sodium in my diet (up to 2300 mg a day) so we could test my body's limits. It was awesome to see that I was living like a normal human being for the first time in what seemed like FOREVER and feel great while doing it! At the end of my pill removal process I went on a 4 mile hike up a mountain with a group of friends, I had a bit of a panic attack when I found myself short of breath (once again forgetting elevation does that to a normal person--until my therapist mentioned it when I told him about it). Other than that I was happy that I was able to survive it. When I saw my cardiologist again, he did another echo that looked the same as the last time I had gotten it. I told him about my hiking and he was VERY impressed. He told me I could get off my meds, and I asked him "ok...can I get pg again?" he smiled and said "I don't see why not...you climbed a mountain! You can do this!" of course I started crying and he told me to control my emotions because I was going to have too many soon. He recommended that I continue seeing my therapist and that I see a high risk OB before I decide to get pregnant but that I had the "all clear" from him.

And so feeling on top of the world I went off to fight for the referrals I needed to get the "all clear" from all the other doctors to continue on my trip down mommy lane.

To be continued...

What does it take -- Part 4

About 2 weeks after having left the hospital I had follow ups to schedule and go to. Let me tell you scheduling an OB appointment after having lost a child is painful. I remember I called my OB's office and telling the lady on the other side that the Dr had told me to call her for a post-partum follow up and she wanted to see my on ___ date. The lady asked me if I had given birth, and I said yes. She asked how I was enjoying my baby and I told her she had been stillborn. And she said "Oh! You're that Mrs. _____!" ....what do you say? Well I said "Yeah I guess" and of course began to cry. Yay hormones! So she went on to tell me that my Dr was going to see me during her lunch hour so I wouldn't have to wait. I told her I appreciated that. And got scheduled for my appt. You are actually going to hear very little of my follow-up OB appts because they are too painful to remember. I will tell you this...during my first OB appointment she took off the little tapes that they had put over my c-section incision and I asked when they were going to remove the stitches and she told me that they would dissolve by themselves that I was really more glued together than anything else. Talk about scary!!! When we went outside and I saw the ground covered in sheets of ice fear took over me. I would only shuffle along holding my belly because I honestly pictured my uterus flopping out onto the ice or something like that. Looking back that is one of the funniest experiences I've ever had LOL.

Luckily my first cardiologist was AWESOME!!! He's incredibly young but I think that's what makes him such a great doctor. He didn't want to accept a negative prognosis for me, he did his research and found that usually a combination of ace-inhibitors (A-I) and beta blockers (BB) combined with diuretics to get rid of the extra fluid, a fluid restricted diet and sodium restricted diet usually yielded satisfying results. He sat me down and he told me what most cardiologist would tell me--that I wasn't guaranteed a chance to get to be pregnant again. I was told that PPCM research is very scarce and that the truth was no one knew what caused it and that curing it was hit and miss, to consider myself lucky if I didn't require a heart transplant. Then he told me "let's fix your heart first, then we'll see how you can get pregnant again if you decide to do so" talk about HOPE!!! So we got to work! I started with a ridiculous list of meds and even had to get a pill sorter to keep up with everything. I stuck to my diet restrictions like glue, and would do exactly what he told me what to do.

Just before Christmas we got the call that our daughter's urn was ready, now we had to go pick her up. I couldn't let my hubs do that alone and so I went with him. I hadn't gotten a chance to really come to terms with anything and here I was in the car going to some funeral home I'd never seen to pick up what was left of our daughter. I could tell my hubs was not ok, but I didn't know what to do to fix it. So I just held his hand and told him how much I loved him and we went in the funeral home. He did all the talking and the lady there was very nice. She took out the urn and gave it to us to inspect. The second that urn hit my hands I lost it and so did my husband. I couldn't believe that was all that was left of our Michelle. After about 45 minutes of crying in the car, we finally pulled ourselves together and went home.

Christmas came and my dad and little siblings came to visit for a week. It was nice to have them there but painful to see the pain they had in their eyes. My baby sis (8yrs old at the time) was especially confused. So we all did our best to pretend nothing bad had happened and celebrate for the kids. We rented movies and would spend our days clumped up in our living room watching movies (minus the popcorn and goodies). New Years eve I was allowed to leave the apartment to go with my hubs and pick up my cousins from the airport. I was so happy to see them, they were just what I needed, people my age that would distract me...well ok, they are a little younger but still an excellent distraction! We got back to the apartment and chatted up with my parents for a couple of hours then went to bed. The next day my parents and siblings left. It was hard to say goodbye to my mom after having depended on her so greatly for an entire month. Beyond that she was taking my Michelle. We had decided that the best place for her to be was at my Grandma's house with my grandpa's ashes and my brother's ashes. So I had to say goodbye and I couldn't do it, just like when I had to say goodbye to my brother (died of cancer in 2002) I couldn't do it, so I didn't I just said I'll see you soon! I knew I'd be home to see her soon.

After a complete meltdown, I turned to my cousins (who were also crying) and said..."so where are we going?" they looked at me confused and asked if it was safe for me to go out and I said "I have to, I might go insane if I don't PLEASE let me out of here!!!" so after talking to my hubs we decided to go to the botanical gardens and to the zoo (my two favorite OKC places). I would have to stop often and take food in case I got hungry, and it was FREEZING but I needed to get out and the fresh air felt so good! After I told my cardiologist we had done that he was very impressed that I was able to hold up to such day trips. Soon all my family was gone and my hubs and I were left to pick up the pieces and march on.

A month after waking up in ICU everything finally hit me. I remember I was at the checkout line at the store and realized it had been exactly one month. I turned to my hubs and said "I almost died a month ago" he says that I got a panicked look on my face and began breathing quickly and he knew I was about to have a panic attack so payed quickly and got me to the car so I could freak out in peace. I honestly just remember telling him that but I don't remember how I got home...funny how the brain works that way.

Three months after my hospital stay I was completely recovered. With an ejection fraction (EF) of 65% (normal is anything above 50-55%) and was able to do cardio for up to 25 mins. Considering I started at 5 minutes a day it was rockin'!

To be continued...