A heart parent.

We live each day with the unknown. It's all uncharted territory that were being faced with. The most crucial time of Eli's life is the first few years. We have to get him through the first 3 stages and come out being able to sustain himself. When things go quiet we usually know things are somewhat NORMAL. 

I have realized that I am one of many mothers that looks to the web for more insight on things we don't hear of often. I saw that a baby born with HLHS is 2 in 10,000. Once you have one, your chances of the next child having it is 1 in 4. For me, at first, this wasn't difficult to fathom. The closer I get to little Eli approaching the sadness starts to set in. This will be my last baby. Do I know that for sure. No. But that's the plan.

We are just down to our final 4 weeks. With Eli's induction set for July 21st. I find myself physically ready, but mentally I still feel weeks behind. I am so close to being a mother of 2. 

Which that in itself, is a whole new blog entry. 

Xoxo 

Eli's surgeon-Dr. David Morales

David L.S. Morales, MD 

Chief of Cardiovascular Surgery, The Heart Institute, Cardiothoracic Surgery Co-Executive Director, The Heart Institute Clark-Helmsworth Chair of Cardiovascular Surgery Professor, UC Department of Pediatrics Professor, UC Division of Surgery 

Clinical Interests Congenital heart surgery; heterotaxy syndrome; pediatric heart and lung transplantation; mechanical circulatory support 

Research Interests Clinical and translational research related to mechanical circulatory support and tissue engineering MD: Yale University School of Medicine, New Haven, CT. Residency: General and cardiothoracic surgery, New York-Presbyterian Medical Center, Columbia University, New York, NY. Fellowships: Congenital heart surgery, Texas Children’s Hospital, Baylor University, Waco, TX. Board certifications: Surgery, thoracic surgery, congenital heart surgery. 

I swear I am not being a creeper, as Danny calls it. I just wanted to know the basics. Right? Who wouldn't wanna know a little background on the man that's about to hold your newborn baby son's life/heart in his own hands! HELLLLO! 🙋ME! That's who! He was very nice. I immediately told Danny before he walked in the door that I really hoped this guy wasn't an asshole. Luckily, he wasnt. I don't think my hormones could have handled a jerk-off and the loads of information we were about to recieve. Although being an hour late, the guy answered all questions and gave us what I think we needed. I left feeling a bit overwhelmed, but more hope filled my heart. 

As we were leaving, he said..."see you and your son in a couple of weeks"...my chest felt like it was on fire. I couldnt catch my breathe for just a split second. Wait, what? A couple of weeks! Seriously, we are to that point now. I couldnt quite grasp it until later in the day when I was trying to explain how the appointment went to a few coworkers. I had a brief moment of panic in the bathroom. I collected, and went about the day. Seriously, a few weeks. I am a ticking time bomb. And thats just now evident to me. Someone still wanna tell me this is all just a dream...or am I about to be slapped in the face with one of THE most difficult journeys of my life!

So close!

Holy smokes, where do I begin. What a crazy few weeks it has been with little Eli James! First off, let me just start off by thanking everyone who purchased a shirt for Eli's HLHS awareness! The turnout was amazing. I couldnt believe we sold 53 shirts! Also, a huge shout out to Aaron Yoder for getting those bad boys done so quickly and so nicely! Cant wait to place another order in the next few weeks :) 

 Eli has not been doing well with his NSTs. Each time, I am required to be released by a physician because he does not want to accelerate much past the 130s for heartrate. They like to see a 15 beat increase from his baseline rate which is usually around 125s so hes not accelerating very well on his own. Once a physician has overlookd his graph and sees movement, rate and contraction, she determines the next step. Which has been for me to just resume activity like normal. No need to be admitted or bed rest...until last week! I was put on bedrest for the weekend and while that seemed to help, it kind of made things a bit more real. I was able to get some time on the couch and off my feet. Although many moments I caught myself picking up toys, playing trains with my oh so handsome 2 year old and going outside to remind myself that I wasnt in a cage! Sunday night things seemed to just get worse. I woke up around 4am to some very heavy contractions. They were coming about every 8mins. I almost panicked. BUT I remembered how awful those contractions were with Lucas, and just kept telling myself...these, arent that bad! I timed them for another 4 hours and thought I better call the doc to get back in and checked to make sure I wasnt dilating more. Pfew! I wasnt! Eli just wants out, basically. I was given meds to keep the contractions at a hault, and keep baby Eli from exiting his premises for another 2 weeks. I am not allowed to take the medication after 36 weeks...So once the meds are done, its free reign for baby Eli to come out and meet us! We are expecting him not long after the medications are complete. So that puts us at the first week of July! I have a few people who did guess that early, so we shall see. I am back to work. I find myself struggling for air this time around when I am trying to have conversations, and its become quite difficult to sit in my chair for more than 20 mins at a time. I am not even close to being as huge as I was with Lucas. But I think its because Eli is big for these types of babies and the less weight gain on my end, is playing a huge role in my not so comfy quarters! Here is whats next for us for the rest of June!! 

June 19th, meet Eli's surgeon (DR.MORALES) 

June 21, NST 

June 25, NST 

June 28, doc appt/stop meds/growth ultrasound-which will give us a close estimate of how much he will weigh at birth! 

 My next updates will be for the month of July! ARE YOU KIDDING ME! Thats the month I am due! Thats the month we are going to have another baby boy! 

  Shit.

NST #5

Same routine. Different day. Today I was put on the monitor first and then I got my fluids checked. Eli's heart rate was monitored for the 20 minutes or however long it took to get his increased rates above baseline. 

Well that took a bit. He had to be buzzed twice and still couldn't get it high enough for the tech to feel comfortable. She came in and said "now don't get worried but I called the doc to come check his graph"! YEAH OK! I won't freak out. Secretly I was planning my escape. 

Doc overlooked the graph and said she was fine with the increase. Even though it wasn't as high as she would like she didn't see any signs of harmful distress. She said, "were getting closer"...how close? Can someone just tell me now ha. This would make things a lot easier :)