Saturday, April 26, 2014

10 Months

Today is 10 months.  I can honestly say I'm in a better place for this anniversary emotionally than I have been in a while.  Of course that means I also have some guilt, but such is life and not as much as I would have had a couple months ago.  My counselor has been wonderful and helped me realize some things that have made this anniversary better.

One of the most helpful things she said to me was that as a mother, I have a lot of love to give and split.  Sometimes I'll need to focus on one child, sometimes on the other and that's OK.  I told her I was having a lot of guilt about feeling like I haven't given Madeline enough of my time (it hadn't even been 6 months since we lost her that I got pregnant).  And then vice versa, not focusing on this baby and being happy enough.  Reminding me that I am able to split my focus and that when I'm focusing more on one child than the other doesn't mean I love the other any less was so helpful and something I hadn't really thought about before.  Perspective.  It's amazing.  There are days that I'm going to have Madeline more on my mind and days where this baby will be at the forefront and that's OK.  That's normal.

Just because I'm not falling apart today doesn't mean I love or miss Madeline any less.  In fact I like to think she'd be happy that I'm having a good day.  That I'm remembering the joy she brought to our lives instead of focusing on the fact that we don't have her here with us.

I don't know what the next two month anniversaries will bring.  I'd like to think that I can continue to be in a good place on those days, but if I'm not it will be OK.  June will be a year and will probably be hard and if it is I won't get down on myself for it.  I still can't quite believe we're this close to a year.  I don't know where the time has gone.  It's also weird to think that I'll only be a little over a month before my due date at that point.

I think another thing that has helped today is that we're visiting Adam's family for the weekend.  We were with his grandmother this afternoon and will be seeing more of his family tonight.  There have been other happy, positive things for me to focus on besides missing our daughter.  We're truly lucky to have the family and friends that we do.

So here's to a good day of remembering how beautiful and precious Madeline was and not focusing only on the fact that she's not here with us.  I will always wish she was, but I can find the joy in the time we did have with her.

Tuesday, April 22, 2014

Pediatric Cardiologist Appointment

Today we had our appointment with the pediatric cardiologist.  We had been waiting for what felt like forever (not really I know) and it was a relief to go.  Luckily the time between when we should have had the appointment and today wasn't too bad for me.  My mom was already here to go with us when we got the call last week so she stayed through until today.  Having her here and helping me with projects around the house was wonderful.  I also had other family and friends to help me take my mind off things.  Having the weekend in between also helped because Adam and I had that time together and we not only relaxed, but also did some projects around the house as well as registered.  Last week my counselor suggested doing something fun to celebrate this baby to keep from focusing on possible negativity and registering fit the bill.  We didn't get to do that last time (we were going to the weekend I went to the hospital) and so it was something special and specific to this baby.  We got a lot accomplished and it helped take my mind off things.  Win win in my book.

We were in the appointment for at least 45 minutes with the tech and the doctor.  It was nice to see that they were so thorough.  The tech started the ultrasound and of course our daughter decided that was the best time to be a mover and a shaker.  She's a fairly active baby, but not usually in the morning.  Even though they needed her to be a bit more still it was nice to see her moving around (although it's kinda weird to see her move and feel her at the same time since she's still inside).  She had me change position at one point to see if they could get a better angle and that helped.  They didn't stop until they were able to see and hear everything they needed to.  That was a relief as well.  They didn't just say "Well she's moving too much, come back later."

Once they were through the doctor talked to us.  She said as of right now our daughter has some heart defects, but does not have Tetralogy of Fallot (I'm going to call it Tet from here on out).  Her aorta does overlap both ventricles like in Tet, but currently they estimate it's 20-30%, so on the lower side.  An overlap of 50% would be much more concerning.  She also has a hole between her ventricles, but again it's not as big as they would expect with Tet.  Currently her pulmonary valve looks normal which is good and another reason she wouldn't diagnose Tet at this point.  This also means she doesn't have the fourth problem with Tet, hypertrophy of the right ventricle.  Good news thus far!

The doctor told us that because she is still growing and developing that it's possible things could still change so we're going back in 6 weeks so they can look again and make a more definitive diagnosis and plan.  She said several things could happen at this point.  First, we come back and everything is the same as it was today.  As for the future it's a wait and see game.  She might need surgery, or she might not.  Second, we come back and things are better (specifically the hole closing).  In that instance she probably wouldn't need surgery.  Third, we come back and the pulmonary valve has stopped growing (so it basically looks the same as it did today) and then she would diagnose Tetralogy of Fallot.  If that's the case then we'll talk more at that point about specifics for the future.  We didn't talk about that today because it may not even be an issue.

So we're still in a bit of a wait and see mode (we should get used to this as parents right?) but overall I feel good and that we got good news today.  It's amazing to me that even though they can see issues right now, that as she grows the issues could actually fix themselves.  The human body is amazing and crazy.  I'm focusing on the positive.  It's much better news than we could have gotten.  Plus, if in 6 weeks she does end up diagnosing Tet, it won't be the most severe because the placement of her aorta isn't as bad as it could be (and is easier to fix, 50% and over the hole add some difficulties).  So regardless of what they see in 6 weeks it will all be OK in the end.  I feel confident in that.

Overall we got good news with some more waiting, but at least we know we can rule out any worst case scenarios that may have been floating around in our heads.  I feel better at any rate.  Focusing on the positive has really helped (and staying busy) so I'll just continue to do that.  I've already spent too much of this pregnancy worrying and thinking of negative things.  It doesn't help or change anything and I've enjoyed life so much more since I really made an effort to change my outlook (seeing a counselor is also a big part of that).  Of course I'll still have days that I'm anxious or do let the worry win, but they won't be the majority of days.  We'll have our daughter and if she ends up needing some extra care, that's just fine.  In the end all of us will be OK.

Thursday, April 17, 2014

Waiting

We were supposed to see the pediatric cardiologist today, but that didn't happen.  They called and we had to reschedule (their tech who does the echocardiograms was out due to a back injury).  So now we're going next Tuesday.

Initially I was frustrated.  I had been waiting and waiting for today to arrive so we might find out something and now there's more waiting.  But I'm trying to stay positive and look on the bright side.  She's only getting bigger which is better to be able to do the echo.  She may not have it.  As long as she's still inside everything is fine.  These are all good things.  So we have to wait a few more days.  In the scheme of things . . . not a big deal.

I had an appointment with my counselor this afternoon which also helped.  Seeing her has helped me a lot and I'm starting to feel more like myself and actually enjoy this pregnancy.  I'm not as anxious as I have been and am more positive.  So while I wish we had more information today, all in all it wasn't a bad day and Tuesday will be here before we know it.

Thursday, April 10, 2014

High Risk Appointment 4

Today I had another appointment with the high risk doctor.  The goals for today were to check my cervix to see how it's doing and to look at the baby's heart again because they couldn't get a good view at the 20 week ultrasound (her arm was in the way).

The ultrasound showed she was growing like she's supposed to.  She was active and my cervix looks great.  It hasn't opened at all and the stitch still looks good.  Then they focused on her heart.  They could see the right side last time, but not the left.  As the tech continued to look the doctor came in to be a part of the ultrasound as well.  After looking at it for several minutes he told us he's concerned she may have a heart defect.  He's not 100% sure because she was moving a lot and it was hard to get a good angle long enough but it's enough of a concern that he wants to send us to the pediatric cardiologist to get an echo and find out for sure.

The specific defect he thinks she may have is called Tetralogy of Fallot.  The link takes you to the Mayo Clinic's info page about it. Here is another from Cincinnati Children's Hospital.  With this defect there are four issues.  The first is the narrowing of the pulmonary valve which reduces blood flow to the lungs.  The second is a hole between the ventricles which causes blood to flow back and forth.  The concern here is that not enough oxygenated blood will be pumped throughout the body and the heart is overworked.  The third is that instead of the aorta coming off the left ventricle it is positioned above the hole and is therefore connected to both ventricles.  Again, the mixing of oxygenated blood and non oxygenated blood is the issue.  The fourth is hypertrophy of the right ventricle.  Basically it becomes enlarged because it has to work so much harder.

The good thing is that surgery can fix it.  If she does have this defect she would have surgery anywhere from right after birth up to around 6 months or a year.  It all depends on how she does once she's born.  Right now it's not an issue because she's getting everything from me.  It becomes an issue when she is breathing on her own.  If she is cyanotic within a few days of birth they'll do the surgery sooner.  If not, it's a monitor and see timeline (this is all based on research I've done on my own . . . we'll know more once we see the cardiologist).

Unfortunately this surgery isn't done in Lexington so we'll have to go somewhere else for delivery and the surgery if she does have it.  I'll deliver wherever the surgeon is in case she needs the surgery quickly.  We'll see where the cardiologist recommends if it is an issue.

It's been a whirlwind of a day.  Deep down I don't think we'll lose her because of this defect.  As long as she's inside me she's fine.  Once she's born, I know this surgery has been around for a while and it has a high success rate with a low mortality rate.  Afterwards lots of people go on to lead normal lives (with yearly visits to the cardiologist of course . . . that's another thing to think about).  What's getting me is more the shock.  And the idea of one more thing being added on.  I know there is no such thing as a "normal pregnancy, " but I'm really over having things pop up.  We'll deal with things as they come and there's nothing else we can do.  We'll be as prepared as we can be and as informed as we can be and keep moving forward.  Do I like the idea of my newborn having heart surgery?  Of course not.  But the surgery can fix the problem so it'll be worth the worry.

I have to keep reminding myself she may not even have this defect.  They're sending us to the pediatric cardiologist because they're concerned, but they're not 100% sure that it's there.  The cardiologist will have the equipment and expertise to know for sure.  If it turns out she does have it, there will be a plan. Just like we had a plan for this pregnancy.  And aside from this, everything has been going well and the plan is working.  So there is no reason to think another plan won't.  They're also not concerned about anything else.  The doctor said sometimes this heart defect is associated with chromosomal abnormalities, but he hasn't seen anything to make him concerned about that.

I'd be lying if I said I don't have anxiety about this or that I'm not worried.  Right after the appointment I had my time to let it all hit me and let out my frustrations (and I'm sure I'll have other times too).  But worrying is not going to change or help anything.  Right now I'm going to focus on the positives and come up with the questions I want to ask the cardiologist.  We'll be seeing her in a week.  So at least it isn't too long to be in limbo wondering.  So thankful for the wonderfully supportive people I have in my life to help me deal.

Thursday, April 3, 2014

Making it Through a Final Milestone . . . What Now?

The past couple days have been a bit rough for me.  Yesterday I was 22 weeks 4 days, exactly how far along I was when I delivered Madeline.  It's been a milestone I knew was approaching and trying not to dwell on, but that didn't work out so well.

In the morning I had my PAL support group which was helpful.  It gave me a place to talk with people who understood and also hear about what they're going through to remind myself I'm not the only one with issues.  I got support and gave support which was nice.  Afterward I went to see Madeline.  I haven't been in quite a while and I thought the significance of the day was a sign I needed to go.  I've been avoiding it if I'm honest.  I feel guilty when I go for lots of various reasons.  One because I'm pregnant.  I'm not replacing her and I know that, but it's still hard.  Also because I have to leave.  I know it sounds weird, but leaving her behind every time is hard.  I also felt horrible because her marker was dirty from all of the snow, ice and rain.  There were also several new graves around her so there's very little grass.  Her marker was covered in mud and I didn't bring anything with me to clean it.  I used  my fingers to get a majority of it off, but it still wasn't great.  One of the mothers from my support group gave me some tips on cleaning it so I'll do that next week.  Now that the weather is warming up and nurseries are opening again I'll bring her some nice flowers too.  I was glad I went to see her, but I left feeling pretty numb.  Afterwards I met some of my support group ladies for lunch.  It was another nice distraction and we talked about more than just our losses.  It's been nice really getting to know them outside of group.

I came home afterwards and spent the rest of the afternoon and night in a funk.  I was tired (didn't sleep well the night before with my anxiety about what day it was, kept feeling twinges in my cerclage which I haven't felt in weeks . . . not to mention at 3am all I could think about was at this point in my pregnancy with Madeline she was being born) but couldn't fall asleep to take a nap.  I was upset but couldn't cry (and isn't that a weird feeling?  It's just below the surface, bubbling, but the tears just wouldn't come).  I had all of this guilt hanging on me (guilt because I was thinking of Madeline so much and not her little sister that is still inside me (thank goodness), guilt because I was letting everything overwhelm me again, guilt because I was focusing on the negative and not the positive . . . the list goes on).  I just curled up on the couch with the dogs and stared at whatever was playing on Netflix.

Our daughter was pretty active last night (she tends to be at night, just like her sister).  While I always enjoy feeling her move and knowing she is doing well, it didn't bring as much comfort as it should.  Madeline was always fine.  There was nothing wrong with her.  She was active the whole time.  I was the problem.  It was my body that failed.  So while I felt her move and was thankful, it still didn't ease the tension and worry of my body failing again.  I know I have a stitch this time and that greatly decreases the chances of having the same outcome, but that doesn't mean my body will cooperate fully. I have to keep reminding myself that if my cervix tries to open the stitch will stop it's progress, we'll have notice and then go from there.  But it's still hard to accept logic.

Then midnight hit and it was officially a new day.  I felt some relief that we'd made it through and nothing had happened (again logic says it wouldn't, but my emotions don't listen to logic).  But now there's a new anxiety.  I'm now officially more pregnant than I've ever been.  I've experienced a little over half of pregnancy and delivered a baby, but I have no idea what the next half is like.  I have no personal reference point.  It's all new and that's terrifying.  Even though up until now some of my references weren't great or happy, I still had them.  Not anymore.  It's such a surreal notion and I don't quite know how to handle it.  It's like I'm pregnant for the first time, even though this is my third pregnancy.

Today has been filled with a lot of thinking.  I don't want to get buried again, but honestly the thought of leaving my house today made me ill.  I know that today really isn't any different from yesterday, I'm just as pregnant now as I was then, but emotionally it is.  It's completely different.  I've spent a lot of time so far waiting to get through specific milestones and keeping myself somewhat emotionally closed off to get through them (more so in the beginning than in the past few weeks).  Once we made it to 9 weeks there was a small relief (we'd made it past the first pregnancy).  Then we made it to the end of the first trimester.  This also brought another milestone, the cerclage.  I honestly did feel a lot better and more connected to this pregnancy after the surgery.  Still not where I should be, but better than it had been.  Then we made it to the 20 week ultrasound where we not only found out our baby's gender but also if she was OK.  Was she developing normally?  Any problems they were worried about?  We found out she was a girl and that everything with her and myself looked great.  No red flags, nothing to cause worry.  I breathed a sigh of relief and allowed myself to give over even more.  Next was hitting 21 weeks (when I went to the hospital with Madeline).  I made it through and our daughter was still doing fine and not trying to get out.  My body gave every indication it was cooperating and I could trust it.  And then yesterday was the last big milestone.  I made it through the day still with every indication my body is actually doing what it is supposed to.  I'm so thankful, but now I don't have these milestones anymore.  Sure there's pregnancy milestones in general that will still occur from here on out, but I have no reference for those.

Also making it past that last milestone broke the wall I had around my emotions.  Suddenly this is all very, very real.  I know that sounds silly.  It's been real since I took the pregnancy test and I have become attached, but somehow now it's different.  Making it past where I was with Madeline makes it more concrete.  We've made it this far with nothing bad happening and now I have to really accept that this is real.  I'm still not in a place to say that everything from here on out will be smooth sailing . . . not by a long shot.  But there is a certain weight that has been lifted and I feel the bubbles of hope I'd been keeping down for so long springing forth.  Of course it's all a roller coaster.  The hope comes up and then my emotions say, "But don't forget . . . this is all new now . . . you have no idea what this is going to be like from here on out . . . don't get too comfy . . . the pressure on your cervix will only continue to increase."  Now it's going to be about finding the balance even more than before.  Which is better?  Worrying about something you've had happen happening again or worrying about not knowing what can happen?  Both don't do a lot of good.  I can't control what's going to happen and that's a hard pill to swallow.  Somehow being able to compare this pregnancy to the last made me feel like I had some sort of control (also a fallacy but it made me feel better) and I don't have that anymore.

Luckily I have doctor appointments next week that should help ease my mind, especially with the high risk doctor.  They'll be checking my cervix again to see what it looks like now that we've made it past these milestones.  What they find will lead to various plans of action ranging from continuing as normal to bed rest.  I have every reason to think what they find will be normal and nothing will change, but it will be nice to have conformation.

To end on a positive note to keep from getting bogged down: Here's to making it through (we're almost there . . . few hours shy) the first new day of pregnancy for me.  It's been emotional, but I am so thankful that I'm here.  My daughter is active and still inside (with no indication that will change in the near future).  I'm still healthy (if anxious).  It's going to be new from now on, but that doesn't have to be a bad thing.