Archive for the ‘Pregnancy Associated Cardiomyopathy’ Category

Breastfeeding Breakthrough!
January 23, 2008

Ok, as you can tell by the title I’m going to give you TMI… so if you are squeemish or male you might want to skip this post.  It’s funny how in person I’m so modest, but online I’m so open.  Kind of a contradiction I know.

Last night JD and I had a breastfeeding breakthrough.  Because JD was born so early his sucking reflex wasn’t very strong.  Add to that the fact that I have flat nipples, I have been using a nipple sheild when breastfeeding so that JD can latch on.  Last night he was able to latch on without the shield for the second half of a feeding!  WAHOOO.  I am sure you are wondering why it’s a big deal.  One of the perks of breastfeeding is that you don’t have to worry about a ton of bottles and it’s just on demand.  When you  have to make sure you  have a shield and it’s clean all the time it takes some of the convenience.

Oh and on the Cardiology front, I’m being started on the diuretic today.  Guess I better stay close to the restroom because I hear they kick in and you start to urinate very quickly after taking them.  FUN FUN!

Boy this whole post is full of TMI!  FUN!

Pregnant and Modest?
January 22, 2008

I’m a pretty modest person.  I don’t even like being fully undressed in front of Jeremy… so child birth was quite the experience.  By the time JD was born I didn’t care who was watching what.  Jeremy didn’t want to watch the actual birth, and I’m really kind of glad because now that I’m starting to heal my concern about who saw what is coming back.  He did however catch a glimpse of the doctor stitching up the episiotomy.  I think he is still having nightmares about it.

Between birth, the fact that I had a catheter in that they had to check every few hours, and that I was on Magnesium Sulfate for 48 hours (making me a bit loopy and often requiring extra help)  I had to learn not to be shy about a nurse checking things out, pushing and prodding.  I’m glad I’ve gotten some what used to it because now I have to deal with breast feeding and having a nurse help and watch with that.  Because JD is in the Level 2 Nursery NICU unit they monitor his feedings closely.  Checking to make sure he’s getting fluids, he’s “latched” properly, and I’m doing ok.  I still have my moments of self consciousness and it will be hard to adjust to feedings at home where there are people around and trying not to let it get to me.  With the nurses I figure they see it all the time and if I accidentally flash them (easy to do being so big chested) it’s not a big deal.

Today I had an appointment with my Cardiologist.  They are concerned about my massive swelling that has yet to go away.  If it’s not gone, or at least starting to get better in the next couple days they are going to start me on some Diuretics to get rid of the fluid and do a heart echo immediately.  The concern they have is that if it’s related to my heart and not just because I gave birth then it’s a sign that the labor weakened it more.  Good news is that excess swelling is common after birth in many women so that’s why he’s waiting the few days.  He is also having me weigh myself daily to see if there is excess gain due to retaining the water.  I am still going to be on the beta blockers till at least 3-6 months post delivery.  They will start doing heart echo’s then (unless they have to sooner because of the water retention) to make sure that I’m back to normal function.  If I am then we will get the green light to have more children later down the road (much later if you ask us).  With the next pregnancy we would do a heart echo before trying to conceive and then continue them throughout the pregnancy to make sure that the Cardiomyopathy doesn’t resurface, and so if it does it’s caught early.  So I guess in 6 months we’ll know the “are you gonna have more?” answer.

More Detail
January 17, 2008

Here’s some detail about the past few days.

I went to the Periantologist on Tuesday and because I’d been having headaches she was worried that Pre-e was coming on fast and wanted to do an amniocentesis. My OB said no and decided that with the Cardiomyopathy and the Pre-e (that just developed) that it would be better to just induce.  Granted at first I didn’t realize that was what they were saying and I was in shock when it hit me. I went straight up to Labor and Delivery at 4:30PM. I had talked to the Periantologist about the c-sec vs. vaginal delivery and she really wanted me to do the vaginal delivery because she believed it would be best for my heart.

They started me on Magnesium Sulfate, light fluids and Pitocen. Once the Pit got going they gave me an epidural right off the bat and then broke my membranes. I had no choice about the epidural because they wanted me to labor as pain free as possible.   Having an Epidural was always a huge fear of mine, but it was SO easy and didn’t hurt in the least.

The labor went very well, the only surprises were that my BP actually dipped so low around 7am wed morning that they had to give me 3 shots of ephedrine to bring it back up. It was hard to believe my BP would be low but it happened. My Epidural ran out for a little while once I was fully dilated but they got it set back up quickly.   Towards the end the monitors (internal and external) wern’t picking up my contractions completly.  They were showing them very weak and yet they were getting worse and worse.  The last nurse I had was commenting about how she wasn’t going to check me for a while when I finally asked her too and she was shocked to see how much I was progressing.  From 6cm on it felt like it went pretty quickly.  When the epidural was getting reloaded they also gave me a shot of something else to help ease the pain so I wouldn’t want to push.  All it seemed to do was knock me out.  I would fall asleep or into a daze between each contraction, even towards the end.  They wouldn’t let me push at first when I was fully dilated. Decided it would stress out my heart, that was VERY hard and finally I was allowed to push a bit after BEGGING and then finally telling the nurse to call the doctor and ask again because I was going to do it anyway. It felt SO much better to push, I can’t even explain the pain when they would just make me lay there and try to do nothing. Finally the Dr got there and he used forceps to help get the little one out while I was allowed to ‘gently’ push to help him.  The forceps were used because they wanted me to do as little work as possible but poor JD has some sad bruises on his little head now.

Jacob Diedrich Arthur M. was born at 10:50am. He is 4 weeks 3 days early. 6lbs. 9oz. and 19 inches long.  Believe it or not the Ultrasound he had done Tuesday morning put him at exactly that weight!  What are the odds?! His lungs are actually good but he is having some problems with too much blood. They have had him on some IV fluids and also taken some of his blood by incerting an IV into his umbilical cord to try and help the situation. He’s been in the nursery since he was born and I got to see him this evening for a little while. That’s the hardest thing… not having him here with me now and knowing he might not come home when I do in a few days.

I hadn’t seen him at all since the delivery and even then it was only for about a minute.  I cried all through dinner.  Lovely hormones and pregnancy.  I was told by one of the first nurses I had that until I was off the IV’s and Magnesium Sulfate with the cathader out I couldn’t get out of bed and so couldn’t see him.  My nurses tonight however cleared things up and let me go down in a wheelchair and I even got to hold him for a little while.  I can’t even explain to you what an experiance it is.

Jeremy has been AMAZING!  He was a great coach during the labor, and he is so excited about his son.  He’s been in the nursery a lot with him, even when I couldn’t be.  He’s dealing well with my emotional post pregnancy self, and the fears I struggle with since I can’t have JD with me all the time yet.

I’m really hoping he is doing well enough to come home with us Friday… the baby shower on Saturday will be interesting if he’s still in the hospital.

View pictures HERE

37 Weeks
January 4, 2008

No, I am not 37 weeks along (34 weeks) but today we talked to the OB and they may be inducing/c-sec the baby at 37 weeks.  To me that’s better than 36 weeks, but it’d be nice if we could hold out till 38.

On top of going into the OB apparently I was supposed to be going to the Hospital and doing non-stress tests on the baby once a week.  Oops.  We went in today after our appointment and Labor and Delivery was so full that all the triage rooms they normally use were being used.  After waiting for a while they put us in a normal room (so much nicer) and Jeremy got to watch TV for an hour while they chatted with me and monitored the baby.  The nurse was funny and asking me all kinds of questions about Cardiomyopathy.  She had apparently watched Beaches and asked me if that’s what the woman in the show died from.  I told her I wasn’t sure.  I came home and googled it and sure enough, thats what killed Barbara Hershey’s character.  I told her that even if that’s what it was the medication and monitoring now days is really good and it was caught early for me so hopefully we can avoid it getting worse or needing anything crazy like a transplant or a pacemaker.  I feel like it’s probably good that I’m educating one nurse at the Hospital each time I go in.  It’s a constant reminder that they don’t know a lot about the condition with Pregnancy.

More Medication
January 3, 2008

I met with my cardiologist today and he has doubled my heart medication.  My blood pressure has been climbing very slowly and my resting pulse is hanging out around 100bpm, it’s not too bad but on the meds it should be much better.  The big drawback I’m worried about is that the higher dosage of medication may make me even more tired.  I already feel like I have NO energy and sleep as much as possible.  I go back in to see him in 2 weeks to check on how things are progressing with my heart.  He shared the same concern about the Pre-eclampsia that the OB’s are worried about and seemed glad that I was going in to see them twice a week.  He made a comment about having me deliver no later than 38 weeks if things don’t seem to get better.  That is only 4 weeks away, and while I’d love not to be pregnant anymore there is still a lot to do before we have Uno.  All in the Lords time I guess.  I’m not even sure if he’s breech still.  I plan on asking the OB tomorrow when I see them.

On Monday the OB that I saw (it’s a practice, I see 5 of them and love them all) said they would discuss my “options” at 36 weeks.  I’m now confused if he meant that at 36 weeks they would talk about the labor and what not, or if they are going to give me options to actually deliver at 36 weeks (uh, only 2 weeks away).  Mom thinks he meant delivery at 36 weeks but I’m not sure.  Just another thing to ask about tomorrow.

Other fun pregnancy news, the sciatica seems to be coming back off and on.  I can also tell my hips are starting to get ready to give birth because they hurt a lot.  All the muscles seem to be getting prepped.  Emotionally I am ranging from fine to crazy lunitic woman.  I also seem to have lost my kindness filter.  I am SO SORRY to anyone I’ve offended recently.  Good thing I have no energy and stay in bed all day I guess or that list would be much longer.

Just think, soon you’ll all be able to see my little Uno!  We prayed so much that we’d make it this far, and now we have.  It’s an amazing feeling.

Weight Loss
January 1, 2008

I had an appointment with my OB yesterday.  I lost 4 pounds since the last visit (a pound a day?) I’m assuming its just water weight and I was actually shocked I hadn’t gained because I’ve been swelling a lot more.

The baby sounded good and they are still wanting to see me twice a week. I took in the Blood Pressure results I have kept since the last appointment and they are thinking the Cardiologist may up my medication since the numbers are still staying high.  We will see on Thursday when I meet with the Cardiologist.

The Doctor joked about how his mom is “trying to die” in the hospital right now and her EF % is better than mine.  I laughed, but deep down you just don’t wanna hear stuff like that.  Mom and I just laughed it off.   I just haven’t been feeling great the past few days so I’m a bit moody.  Sorry.

Hospital
December 19, 2007

I posted a short version of the hospital experience this past few days on my home blog but I decided to put more detail for those of you that care.

Sunday I was doing really well. Jeremy and Dad gave me a blessing in the afternoon and it was such a good day. When it started to get late the breathing problems started to get worse. Jeremy and I were watching a movie when I started to get a very mild chest pain. After 30 minutes we decided not to risk it and go into the ER since the pain wasn’t going away. About 20 minutes after I was strapped up to everything in the ER the pain went away and I started to feel stupid. I told them the pain was gone but they kept monitoring me anyway. I was still having problems breathing, so I guessed that was why. The chest x-ray they did was fine. About an hour after we got there they came in and put me on oxygen. I started to feel better quite quickly after that. At least another hour passed and mom, Jeremy and I were all ready to go home. We were sure they would be letting me go soon, and I kept telling mom she could leave if she wanted that it was no big deal. I was feeling so sheepish and dumb for going once again to the expensive ER. A few minutes later the doctor comes in and tells me that the Cardiologist wants me admitted. We were all taken back. I’ve never been hospitalized so I’m going from sheepish to shocked in a matter of seconds. Mom left shortly after that and Jeremy stayed with me while they had Labor and Delivery come down and administer a non-stress test on Uno. He was fine and so next thing I know I’m being wheeled off to a small room and hooked up to more monitors. Finally at 3:00am or so Jeremy was able to go home and rest.

That night every-time I would roll over one of the electrodes on my chest would pop off and they would have to wake me up to fix it. They brought breakfast just after 7am, so ya. Not a lot of time between to sleep. Not to mention the stress of being without anyone alone in the dumb hospital.

Monday morning the doctors came to see me. The cardiologist stopped by and let me know that he was ordering another ECG and starting me on the heart medication (a beta-blocker).  Jeremy was able to come quite early so it was nice not to be alone anymore.  My OB came in and told me that he wanted me moved up to Labor and Delivery so that they could monitor the baby as well as myself.  Not long after two nurses came to take me upstairs.  I was shocked at how much nicer and bigger the room was.  Jeremy and I started to laugh, and he was thrilled to have somewhere more comfortable to sit with me.

After getting the baby hooked up to all the monitors they started me on a low dose Beta-Blocker (heart med).  Within a few hours they were able to take me off the Oxygen and just after lunch they took me down to get my ECG.  It was a bit odd being wheeled downstairs in a hospital gown, the whole time I was just praying I wouldn’t happen to bump into anyone I knew!  The tech that did my ECG said “I’m no Cardiologist but it looks like your EF has improved.”  I was SO EXCITED.  Once they took me back upstairs I told mom and then we waited to hear from the Cardiologist.  He came to visit just after 5pm and told me that things were looking a lot better.  It was so nice to know that the medication was working that well already.  My EF went from 45% to 50%.  It’s now at the lowest it can be at and still be considered normal function.  Thank goodness for modern medications.  The Cardiologist let me know that he and my OB decided to keep me one more night to monitor the baby’s reaction to the meds but that if the Periantologist gave us the ok I would be able to go home Tuesday.

Tuesday morning they let us know that they were trying to get me into the Periantologist early.  I already had an appointment at 1:30pm but they were hoping I would be able to go home before that.  No such luck.  We didn’t even get to see her until it was past 2pm.  They did a big ultra sound on Uno and he was measuring even further ahead than before, 2 1/2 weeks ahead.  A whopping 4 lbs and 14oz.  (could be off 12 oz either way).  He was also not shy about his boy parts for the first time since 22 weeks when we found out he was a boy.  It’s always nice to have that reassurance that he really is a boy.  My amniotic fluid was low, so I do have to get that checked again on Friday.  The Periantologist told us to continue working with the medication and keep an eye on my blood pressure.  They are still watching the Hypertension and they just don’t want any complications on top of the heart issue we are already dealing with.  She told me to continue to take it easy and that when it comes time for delivery she’s made sure to make some special notes about how I shouldn’t be hydrated too much for fear the extra fluid would cause my heart to give out.  I made sure to tell mom (Jeremy was with me) so that just in case I forget, someone will be there to remind doctors when I’m in labor.  After all this time I would really like to live, and hold my baby.  We asked the Doctor if it would be ok to be discharged now and she said yes.  I was so excited to be done.  When we got back up to L&D I was ready to have that IV taken out ASAP!  The nurses at the hospital the entire time I was there were wonderful.  I would be thrilled if any of them were there to help during the delivery, I can’t say enough about them.

I still have followups with all the doctors still, and will probably be seeing a few of them a week till Uno finally makes his big debut into the world.  I am just happy that things were able to be caught and treated so well.

Bouncing Boy
December 15, 2007

I think to make me feel better about things little Uno has decided to be quite active the past two days!  It’s really helped me focus and enjoy this part of pregnancy, since it’s one of the only things I do enjoy.

It has gotten harder to breath over the past 24 hours.  I am really not enjoying it at all.  I was told tonight that if it gets any worse over the weekend to go straight to the ER.  Since we just got the bill from the trip I took a few weeks ago I’m praying that it levels off and I can wait till Monday to call the Cardiologist.  I am already using 2 pillows to sleep at night and I tried 3 last night but kept getting a kink in my neck.

I have been putting most updates on my normal blog since this PACM has become part of our lives and not just pregnancy related.  HOWEVER not everyone reads this blog so it’s a bit easier for me to be more open, if that makes sense.  Jeremy is having a really hard time with everything that is going on and I think reading the blog posts reminds him again what is going on.  He never looks here so it’s kind of my escape right now.

It’s amazing to me how we can go from worrying where to get $$ for baby things to all of a sudden dealing with the chance of heart failure and learning all kinds of new medical vocabulary words in the matter of a week.  Researching Pregnancy Associated Cardiomyopathy and Peripartum Cardiomyopathy have really helped me fill up my days.  It’s also helped me to focus on the optimistic things and not all the bad things.  I know we have a long road ahead of us.  Even if we are lucky and it goes away after the baby is born I found out that I’ll most likely be medicated with Beta-Blockers and ACE Inhibitors (after the baby is born for that last one) for a year.  It seems so overwhelming to think about.  I am horrible about remembering to take vitamins!

I just wanted to release a little.  I must be ready for bed.

Pregnancy-Associated Cardiomyopathy
December 11, 2007

I’ve had a few people ask me what the symptoms are for what we just got diagnosed with. It took some digging but I did find this list:

 

Symptoms

Shortness of Breath. This can be exaggerated upon exertion or when lying flat.


Fatigue. Some fatigue is normal with pregnancy and while caring for a new baby, so it’s important to know your body and what is out of the norm.


Swelling. Ankles, feet, hands, and face are all places fluid retention can cause swelling. In severe cases, abdominal swelling may also be present.

Palpitations, or feeling like your heart is racing, stopping, skipping beats, or fluttering.


Frequent night time urination.


Fainting. If this happens, please seek emergency medical attention immediately.


Chest Pain. Always seek immediate care for chest pains.

Now I want to add my little tidbits to the symptoms. The shortness of breath that I had was the main thing I had to deal with. I have joked with Jeremy for weeks that my chest has gotten so large with pregnancy it would choke me when I would lay down. It’s the only explanation I could think of for the problems breathing when I was trying to sleep or even just watching TV. Apparently it wasn’t my massive chest, but my heart that was causing the problems.

When Doctors would ask me about some of the symptoms my response was always “I’m not sure what’s normal with pregnancy.” You see I hadn’t ever been pregnant past the first trimester and so all I had to go by was what I would read online or in baby books. Most symptoms they list above are also just pregnancy ailments some women get. It is hard to know exactly what is excessive, never be afraid to talk to your doctor about something, even if you read that it is normal for pregnancy.

Fatigue is yet another thing that I always chalked up to pregnancy.

Palpitations and a racing pulse were why I ended up in the ER that one Sunday. Thanks to that ER visit I was sent for a follow up with the Cardiologist. My EKG came back fine from the ER and they decided to do the Echo-cardiogram (ECG or Heart Echo) to just make sure things were ok. They briefly mentioned that some pregnant women develop a condition of a weak heart but that it was so rare. The doctor even joked that they hardly even see cases in Utah County and “it’s got to be the baby capital of the US” he teased. That Echo was how they found the condition. I had complained of palpitations before and was told that some are normal during pregnancy. Once again it’s a judgement call as to how much is “some”.

As far as frequent Urination, I didn’t have this symptom. However I know many of you out there that are currently pregnant are not as lucky as I am and constantly have to get up to use the restroom.

Fainting, oh the fainting. I would find myself blacking out if I stood for too long. The worst time of day for me is shower time. Even in the cold of winter I have the bathroom window open, fan on, and the water isn’t too hot. I never told the doctors about the blacking out until after the ER trip. My reason for this is because my mom and her sisters had problems passing out. In the ER they told me my iron was low and that would cause me to get dizzy.

Like I said before, most of these symptoms are just typical pregnancy. Many of them can also be signs of other problems. I had quite a few tests run before they found the PACM. The least favorite being the CAT scan. It’s a rare condition, and that makes me happy because I hope no one else I know has to deal with it. The only advice I can give those of you that asked me for the symptoms is this:

I was ALWAYS afraid that no one would believe me or think I was making up symptoms. I almost didn’t go to the ER that Sunday for fear of just being sent home and told nothing was wrong. Listen to your instinct. If you feel like one or more problems are stepping over the “normal pregnancy” line then tell your doctor.