My Big Fat Lesbian Divorce – Gabriels Heart

In Uncategorized on July 21, 2013 at 6:35 pm

It’s really freaking hard to think that it has been almost a month.

So, here is the run down on where things are.

August of 2000 I gave birth to a wonderful boy. In fact, two of them. I had twins. Only, mid way through my pregnancy (at 20 weeks) I was told I was going to have twins, yet one wasn’t alive. They were in fact, conjoined. When I tell people, they want to know how the boys were conjoined, and usually think of what is full conjoined twins or most commonly known as Siamese Twins. The boys were conjoined, but by one long umbilical cord. The cord made a stop off in the placenta, but kept flowing to the other baby. It is called T.R.A.P Syndrome. Gabriels heart worked for both babies.

When I was told, I was devastated. I grieved the loss of one child, though I had to carry to term, and every day I worried about the health of the other. I was told there was a chance he wouldn’t survive the pregnancy or delivery or birth. The amount of stress was immense. I was grieving the loss, and also trying to prepare the birth of the other without knowing if he would survive. I literally didn’t just reserve one plot for burial, I had to hold two. Yes, it was that awful.

I spent a lot of time (as you can imagine) seeing a specialist, and having ultra sounds done. Every week, and as the time got closer every few days, it was really hard to lay there in the ultrasound room. I wanted to hold that baby so bad, yet I was so afraid to hope. It is a safe thing to say that I walked around in pretty much a depressed state most of the time. I isolated myself and had just enough energy to keep my shit together and try to keep on keeping on for the sake of everyone else. Though I would sit in the bathroom, lock the door, and just cry.

When Gabriel was born, he was transported to the NICU at Doernbechers. I was told that his heart was a mess, and they needed to help him. I was stuck at the hospital where I birthed him, because the medication used during the birth still hadn’t worn off. So off my new baby went, while I watched him being taken via hospital in that big tube. I was just beside myself with worry. He was so beautiful, and I couldn’t even be there to comfort him.

As they were taking Gabriel to the NICU at Doernbechers, the funeral home had already arrived to take Isaac. I had just given birth to two boys, yet I was there in my room, alone. My arms were empty. My heart, full.

Gabriel stayed in the NICU only 10 days. A far cry from the months they tried to prepare me for. I was told that his heart rate was normal, his oxygen level was normal, that everything about him was good and we could go home. I stayed awake for weeks at night, ready to pounce on every whimper. I was terrified to fall asleep. I was so scared something would happen to him, and I wouldn’t be able to help him if I was sleeping. But eventually I settled down and accepted that Gabriel was good. I even took him back for a follow-up echo cardiogram in 2005 *just to be sure* because no matter what, something in the back of my mind always worried. Again, I was told everything was fine. In fact, I remember that Dr telling me specifically that I would never have to have him tested again because his heart was absolutely fine. When the Pediatrician heard a murmur in 2007, and he was looked at once again, I was told again.. he was just fine. The studies were normal (I don’t like the word “normal” btw. I like to use “typically developed”, but for the sake of this and tell you the study results, normal it is).

Gabriel has had some struggles. He is hyper mobile, which means he can turn his leg almost completely backwards. It’s a fascinating, yet concerning trick. He has been plagued by tiring easier than the other children, though his drive to engage is healthy. He finds himself discouraged that he hasn’t been able to finish a “whole lap” at school like the other kids in his class. He’s short and if you recall from an earlier blog, was diagnosed as IGF1 deficient. I attributed some of these things to his poor muscle development and IGF1 levels, but I decided to still have the genetics specialist take a look and see what she thought might be going on.

When we went, she didn’t think he had Ehlers Danlos syndrome, but wanted to do an echo cardiogram to rule it out. So, we scheduled for it to be done on a day we had a lot of other appointments.

I am so thankful she did.

Because the same Dr who told me in 2005 that Gabriels heart was normal, told me in the hall, that Gabriels heart is in fact, not okay. I was just devastated. I still am. We were quickly shuffled to another floor to do an EKG and to meet the Professor of Pediatrics. He explained to me that Gabriel has Anomalous Left Heart Coronary. Meaning, a coronary artery is in the wrong place and it’s trapped between the heart and heart muscle. It’s not something people are even aware they have, usually until it’s too late.

I find myself once again in that place that I am so worried about Gabriel. I am so angry at Doernbecers for not finding this sooner, and telling me that I never needed to bring Gabriel back for an echo cardiogram, back in 2005. Yet I am so thankful the genetics specialist ordered a test, and the radiology technician found it. Mind  you it wasn’t the Dr who first did the test himself and missed it that found it, it was the technician who found it.

Frustration aside, I am trying to just cope with this moment to moment. Because I find myself in a familiar place with my Gabriel once more. I am worried about his health, I am worried about the surgery… no, I am terrified about the surgery. As the date draws closer to his surgery (open heart), I find myself wishing the days would go slower and I can have every moment possible to hold Gabriel.

Everyone keeps telling me not to worry, that medicine has progressed so much. Get real, I am his Mom. Of course I am worried. I have been this place before with Gabriel and it’s not an easy place to be. It’s scary as fuck, pardon my language. I cry, a lot. All I can think about is to get Gabriel through this complete and perfectly perfect and that kid can run a lap at school and kick some ass doing it. But yes, I am going to worry.

Anxiety anyone?

When I stood in that hall (Because as soon as I realized something wasn’t good, I asked him to speak to me in the hall. The Dr was actually going to drop this news in front of Gabriel and his brothers) I felt like I was being told all over again, that I was in limbo. The worry, the tears, the pleading with God, that this was just some awful dream. Only this time, I held Gabriel and cried. I listened as he told me not to worry, but that if anything did happen he wants to be buried with his twin (that was so hard to hear).

I am trying really hard to keep focused on this surgery, and in between my random bursts of tears, I am trying to focus on his upcoming birthday (which is a few weeks after his surgery). We will make it through this, and we will celebrate. We will have a kick ass 13th birthday party, and Gabriel will be better than he is now.

I do have to say that I have been sorely disappointed in that the people I thought would step up and be a support, haven’t been. I cleaned a lot of people off of my Facebook page and regretfully have closed the door of some friendships for now. I really need as much positive support (positive not meaning tell me a bunch of crap how I shouldn’t worry), but I mean by willing to listen and validate. When I was pregnant with the twins, I actually had a woman tell me “Well, when I miscarried a baby, I wasn’t left with anything so you should be happy”.. Yeah, right? .. wtf?  Even now, I have told people that if they look it up, I do not .. NOT.. want to hear their Wikipedia run down. I am listening to the doctors only right now. They are the ones with the information I need. Yet, I had a neighbor tell me how she looked it up and then proceeded to tell me things I asked not to hear. I cut her off, both conversationally and in contact. I can tell the difference between the people who are wanting to help and maybe say something that could have sounded better, and the ones who really should just think about what they are going to say, yet say it anyways.

Thank you to those who have stood up, for your love, support, and most of all prayers. If you have been reading this blog since I first started it, you have been with me through quite a bit in the past few years. I want you to know, that just knowing someone out there is reading this, has always been a great comfort to me. I may not see where the words fall, but I have always felt as though they fell in soft places.

That all being said, I need to rush off and get some things done. One being I should probably think about what to do for dinner. Apparently money doesn’t grow on trees, and neither does a fully cooked dinner for a family of five.

  1. Reblogged this on My Big Fat Lesbian Divorce and commented:

    The blog posted before I was finished writing. Apologies for the resend, but this the complete entry. It was a premature enter button push.

  2. My Heart goes out to you and Gabriel. Yes, words fail to convey the Good Wishes and Prayers that are on their way to you.. Thank you for sharing, and know that I will be praying for you both….and the doctor performing the surgery. You all are in my thoughts.

    • Thank you so much Karen. That means a lot to me. Especially prayers for the surgeon. From what I understand this is a rare heart condition, and they only see 1-2 cases a year. While I believe we have the best surgeon for the procedure, it’s still pretty unnerving. Gabriel is handling it all pretty well himself. The only thing he asked, was if he could pick the date, because he wanted to feel good about the date. So we have the date written down and believing that peace will find its way on that day. Thank you so much again.. *hugs*

      • Hugs right back to you and Gabriel. He sounds like an amazing young man, yes, even at ‘almost 13’ he is a young man..

  3. I’m keeping you all in my prayers my dear friend, you and Gabe especially. My heart goes out to you. Whenever you need to rant, vent, cry or pray even, you are welcome to call.
    ((((SUPER BIG HUGS))))

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: