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The Day I was Quiet for Once.

This morning my head is very cluttered with all sorts of random thoughts so my hope is that I will get some clarity by writing so I can focus on the National Sales Meeting presentations that I need to be working on right now. The To-Do list is right in front of me but for some reason, I can’t seem to get it together. This sales meeting is the culmination of a year’s work into three days of meetings about our various products and how to pitch them. This is my third sales meeting since I started working at Eaton Vance over a year ago and I have a good idea of what needs to be done. Problem is, I have this other train of thought on an endless loop that keeps interrupting my workflow. 

Yesterday we had a non-stress test because of my ‘Advanced Maternal Age’. As the nurse placed the belt and sensors on me, she asked me if this pregnancy was different from my other pregnancies. I paused and said “Yes, it is very different.” and said nothing else. I felt…embarrassed and uncomfortable, not wanting to get into the story about our heart baby. Those of you who know me know that I am open to a fault, I often say too much and tend to ‘overshare’ and then realize my mistake half way through my soliloquy. I never have the filter on and whatever is on my brain usually comes right out.

This time, I didn’t want to say anything. I didn’t want to say anything about her diagnosis or about how this pregnancy has been different. For a few minutes, I just wanted to have a normal moment without mentioning her condition and changing the mood from impending excitement to pity. I feel guilty about this, because I know I have nothing to be ashamed of and this condition was brought upon us by sheer fluke in genetics. We did nothing to be in this situation whatsoever and yet when the opportunity presented itself to explain, I fell silent. 

This continued into the examination room with the obstetrician and I said nothing about her HLHS while he was asking questions about how I was doing and we discussed delivery. As of right now, I have already started dilating and am at 1 centimeter. Of course, I could hang loose like this for a while, and I don’t feel that I am about to have this baby any minute. He asked me if I was to go into full-blown labor,would I like to have a natural birth or a C-Section. Without hesitation I said “Natural, if that is a possiblity.” He said if he was on call, he would recommend that if labor starts before August 8th. Everything else looked great, he wished us well and we would see him next week. 

It didn’t occur to me until this morning the significance of his statement. He was giving me a chance to have some normalcy in a very abnormal situation. He was the same doctor who performed the amnio, and he knew what our situation was; I know this because he asked if all of our doctors were on board with our plans for August 8th. I may have the chance to have the birth I wanted in the first place, and chose this practice for. Of course, I know babies have their own schedules and come when they are ready but this gave me something I didn’t realize I was missing until today. This gave me hope that I may be able to have the delivery I wanted, a shorter recovery time and the chance to hold our daughter in my arms- not held to my face by someone else. 

What a gift that would be, to be able to hold her the second she is born. I remember holding Elizabeth and how significant that moment was in my transition towards motherhood. Perhaps being quiet this time was a good thing. It allowed me to hear something I haven’t heard since March 5, that for a moment, we could be just like everyone else. 

 

 

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Full Term Today

It’s official, Isabelle is considered full term today. I still can’t believe how fast this pregnancy has flown by in spite of the past 4 months of adjusting to our CHD diagnosis. April felt more like a 60 day month while June felt like it was only 15 days. A diagnosis like the one we received can totally throw a person off in a variety of ways. We were robbed of the joys that a normal pregnancy brings. The excitement and hope were taken away from me. I had to shift gears from being excited to how are we going to get through this and how having a sick baby will affect our family. It’s taken me a few months to get to a place where I am no longer waking up at night terrified and full of guilt. We had an ultrasound this past Friday to check her growth and while the technician was going over her head size, abdomen and femur measurements, it occurred to me that since March 5th I have been identifying Isabelle by her disease. I completely forgot that she will also be a newborn baby who happens to have HLHS.

I have spent the past few months trying to learn more about congenital heart defects, her upcoming surgery, her care and what we can expect the first few weeks. I have been researching how and if I will be able to breastfeed Isabelle like I did my other two children. The past few weeks have been spent preparing for postpartum period, which will be in  a very public place and I needed to take the necessary steps to ensure that if I do go insane, people won’t commit me. All of the focus has been on her diagnosis and how it affects me. It has taken away the most important piece of all which is she is our new addition, and will be welcomes with the same love and adoration as our other two were.

It bothers me that I have forgotten the most important piece of having a baby, which is a baby is welcomed into the family and to the world – a joyous occasion. I have not bought one diaper, onesie or anything for this baby. Not one thing. Very different from the other two where you  couldn’t keep me out of stores. This time, I haven’t been able to bring myself to buy so much as a binky. I have been told that it is probably a defense mechanism of some kind, but it’s awkward when people ask me if I am ready and I have to lie.

No, I am not ready. I haven’t set our bedroom up yet because I don’t know how much equipment we are bringing home. I haven’t bought diapers because I don’t know what size she will be when we are bringing her home. We may need to order side snap onesies and special clothing so her tubes won’t get caught on anything. She may be sent home without any tubes, who knows? The Unknown has prevented me from walking into Babies R Us and as happy as my husband is that we haven’t spent more money, the reason behind it isn’t making him happy at all.

And I am still bitter. I found this out the other day when I was watching a Baby Story on TLC and found myself happy at someone getting a diagnosis they were not expecting. After the episode prior where a mom-to-be was upset that her hypnobirthing was being interrupted by inconveniently having to go to the hospital with all of their horrible intrusive care….well…I wanted to scream, frankly. And then this episode came on and the parents were in shock like we were and I was..happy. I was happy that we weren’t the only people who had to change gears with tears running down our faces. I could identify with this family, and it made me feel better for about 10 minutes.

The August Birth Club on BabyCenter is another place I don’t need to be. The trivial issues these people bring up make me want to comment with a snarky “Are you having a healthy child that will not require open-heart surgery? If you are then you need to shut the fuck up.” I haven’t yet, but I know the potential is there if I continue browsing there.  I have also backed off a bit on some of the Facebook pages I normally frequent because of the desire to shut off the CHD tape, or turn the volume down. Thank goodness for my job and all of the insanity that is right around the corner.

This week at work is going to be my busiest time of the year. I am so grateful I have the distraction because without it, I think I would be much worse with all of this. Next week is our company’s National Sales Meeting and I will be working long hours getting presentations set up, making last minute changes and whatever else people need. It will also be my last week of work and what a way for me to make my exit!

My family went on vacation last week, and I am happy my husband spent one night with his family without me. He gets his strength from his family, and I get it from…somewhere. I am heading into this week with a clear focus on my job and not HLHS. It will never leave my mind completely, but I can take this as an opportunity to open my heart up to another child who I want to shower with love instead of fear. One of my favorite lessons I have learned in my adult life is living one day at a time. I would like to take the next 7 days and focus on what Isabelle will bring to this family, instead of how HLHS is going to impact it.

 

 

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Final Fetal Echo and other events of a Tuesday

Today was our final fetal echocardiogram. I don’t know what happens during the ride from Plymouth to Boston, but I think with each mile that we get closer to the hospital, my anxiety level grows. By the time we parked the car, crossed the street and almost got stuck in the automatic revolving door, I had caught myself hoping that two chambers miraculously appeared. I also found myself praying to the God I am not on good terms with right now to please not add any more ‘surprises’. I think he heard me this time. The only surprise I got today was hearing that there are appears to be partial chambers on the left side. Non-functioning, but unexpected nonetheless. Heart function is still good, she is developing well and it looks like I may get the moments I was hoping for to snuggle with her before she is whisked off to surgery. Still can’t have that first moment nursing after birth but I am grateful that we will be able to spend time with her. Good news all around, and I was pleased with the report.
And then came the topic of what to do about visitors.
Honestly, I am not sure how I feel about visitors during those moments we may have with her. I’m torn between wanting to have her to myself, and to share her with our family before she undergoes surgery. I know I am being ridiculous for purely selfish reasons and am hoping it passes along with the waves of impending doom that strike without warning.
We are on the last quarter mile of the race before hitting a new starting line for a marathon.
I thought back to that day when we were told that our baby had this defect I had never heard of before and now hearing that in spite of this, we will be able to hold her like we would a healthy newborn was enough to carry me for the rest of the day. Today we were given the gift of hope only because nothing changed. Funny how that works! I am so grateful that nothing new came up, that we will be able to hold her and I have been given the dilemma of what to do about visitors. That is a gift right there. I didn’t think visitors were an option two months ago.
My apologies if my thoughts are a bit scattered tonight. I wanted to write to see if i could sort through the noise and it appears that maybe I require some sleep before things become more cohesive. And with that, I am off.

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It’s All in my Head

It’s funny what fear can do to a person. It can take a well-adjusted human being and reduce them to a pile of neurotic rubble. The mind can go from rational thought to delusional in a matter of seconds. If you are having trouble staying afloat to begin with, it can be the cement block sending you to the bottom of the ocean. Now, I am far from a well-adjusted human being but I have been given the gift of awareness and came to the conclusion yesterday that my recent increased edginess is coinciding with my increased level of anxiety as we move closer to our deadline. Yeah, I know- genius. But for the past few days, I have been puzzled by my behavior and reactions to certain situations and now it makes sense. I know it’s normal to be nervous at this stage of the game, but what I was fascinated with is how it is manifesting itself in me.
For example, there are some situations at work that are bothering me but in the past I have been able to balance out the negative with the positive and keep a healthy perspective. This past week I have been taking everything personally, and doubting whether or not people were messing with my head. Yeah, like people have nothing better to do than to screw around with my head right now! When I can step away and see things as they really are and not get caught up in what I think is happening, I do well. The fear doesn’t own me, I can still be productive and get a long with my co-workers. The past few weeks have been difficult, and I was doubting my relationship with my boss, my colleagues and reacting to what I perceive to be attacks on me. I keep forgetting that everyone is anxious right now, and it’s not just me. My colleagues are worried for me, and are probably trying to alleviate my workload so I can ease into our next phase with the least amount of stress possible. Why I couldn’t think this way yesterday is beyond me, but I am grateful I was able to take a breath before I said something or reacted poorly. I am my own worst enemy, and I learned this a long time ago. Fear, for me, converts to anger and it gives me the illusion that I have control over the uncontrollable. There is absolutely nothing about our situation that I can control other than taking care of myself and my family. This statement is something I need to drill into my skull on a daily basis. When I see other heart families lose their babies to this syndrome, I want to know what happened- what were their complications? What hospital were they at? Who was their surgeon? How old were they? Were they told that their baby had a good chance like we have been told? Did they have the same illusion that if they just got to the next level, they were closer to the Promised Land of keeping their child?
None of those answers will change my situation. None of those answers will make Isabelle’s heart whole, or ensure that she will be with us for a very long time. It gives me the illusion that if I know what happened, I can take steps to keep it from happening to her. I can control this if I just know. Fact is, right now she is safe. Right now, we were told that she has the best case scenario of HLHS, and the doctors have a positive outlook. Right now, she is safe and with us. If I let those fears overtake me, like they try to do 99% of the time, fear will rob me of what peace of mind I have right now. It’s ok to prepare yourself for the long haul that lies ahead, but it isn’t ok to allow the fear to rob you of the time you have right now.
Please don’t ask me how I came to these conclusions after my last post of self pity, I have no idea how I got to this place! All I know is, I want to enjoy the next 4 weeks with my family and these last few days of peace. We will have plenty of time to worry later, and I don’t want to rob my girls (and my husband) of this precious time before we are all separated for a little while. I’m so grateful I was given this gift of being able to see clearly in spite of myself. Who knows what tomorrow may bring- I could go right back to becoming a raving lunatic tomorrow for all I know…stay tuned. 😉

Family, HLHS, Sobriety, Work (or lack thereof)

Meltdown followed by a Gratitude List

Yesterday was a bad day. I ached, was feeling sorry for myself and was just in a bad spot. Between dealing with people at the office, being 8 months pregnant and trying to look on the bright side in spite of growing anxiety I fell a bit short. Ok, I was very short. I am tired of being this gangly, round ball with flip flops surrounded by skinny beautiful people. I’m tired of the aches and of the constant pain that is under my ribs. And I feel guilty at the same time- like I shouldn’t be because she is exactly where she needs to be and I know this.
Yesterday I was pretty upset and felt robbed. I was feeling sorry for myself. I felt like I can’t complain about how uncomfortable I am because she is right where she needs to be. People are starting the comments of “I bet you can’t wait for this to be over.” Actually, I can. I don’t want to rush right into the next phase, thank you very much. I want to enjoy these last moments of knowing that she is safe, but I have reminders all around me of how things are going to change the minute she is born. I am jealous of new moms who can hand over their babies to relatives and run off for a day. I will be lucky if I get to hold Isabelle before she has to be handed over to the surgical team. She may already be intubated when I get to see her. Yesterday was a total “Why me?” kind of day and I completely melted down by 8:30. I kept asking God why He felt it necessary to give this latest challenge to me. Have I not gone through enough? Why does so much in my life have to be so difficult? Yeah. I know- whine, whine whine.

Most of the time, I can look at these various roadblocks very differently and say they have made me into the person I am now- and can accept it with a level of satisfaction in that I made it through. Today, I don’t feel as bad as I did yesterday but it still isn’t great. I was told once that if I wasn’t grateful, I needed to make a list of things that are positive so I could get grateful. Corny, yes- but it never failed to work if only for a moment. I have nothing to lose other than a few minutes and possible some of this pain.
Here goes nothing:
Tomorrow is the 4th of July and my oldest Elizabeth is marching in the parade through town. She is also performing with the band and Plymouth Philharmonic Orchestra on the waterfront for the 1812 Overture before the fireworks. I am immensely proud of her.
We are hosting a cookout where our family and friends can enjoy themselves in our home.
My sister and nephew are up visiting and I love their company.
My brother, who I don’t see very often at all, is visiting with his wife and her family.
My husband is a huge help around the house and makes me feel better in spite of how awful I think I look.
We live near the best hospital in the world for cardiac care.
I am being cared for by an amazing team of medical professionals.
Our families are preparing to help us with the girls during the first stages of the surgeries, which is a huge comfort to me.
There is hardly anyone in the office today and I can get a lot of work done.
The chef made blueberry pancakes in the Cafe today.
Traffic wasn’t insane this morning.
I had some good laughs with my colleague on the way in.
I am surrounded by people I can be myself with, and not have to constantly pretend that I am ok.
I am not in as much pain when I walk around today.
*sigh*
Ok, I feel better and hopefully it will last more than 5 minutes this time. 🙂
I’m off to get my pancakes.