Thursday, December 16, 2010

A Christmas BuzzKill

We've known about our new little one's heart condition since September 20. I find it hard to talk about the weight of it all, but since our time is getting closer (and people need to know what to expect) you're all getting it at once. We had another pediatric cardiologist appointment this morning, and nothing much has changed. The diagnosis of Hypoplastic Left Heart Syndrome (HLHS) is complicated in and of itself...but the good thing is that with all things considered, it's as straightforward as it could possibly be. What I mean by that is, well, most babies with HLHS have other major problems in addition. We are still anxiously awaiting a referral to an Obstetrician that will actually deliver the baby. Also, we are 99% sure now that the baby will be delivered at Washington Hospital Center. This is not my favorite option, but it's right next door to Children's National Medical Center...and so it's my best option. She will need medicine immediately after birth, so we will be separated until I am well enough to go next door. You can probably figure out why this isn't my favorite option. She will be considered stable and in the Cardiac Intensive Care Unit (CICU) at Children's for approximately 3 days before the surgery. The rarity of this specific heart defect prevents the doctors from telling me exactly what to expect, but we're looking at around 3 weeks in the hospital for recovery. The scary thing is that after all the surgery, wires, tubes and medicine she'll endure, the most common problem keeping HLHS babies in the hospital is their failure to eat. I consider myself fairly educated, since I have attended 2 La Leche League conferences and harassed numerous breast feeding consultants since we got the diagnosis. This being said, I feel sorry for the hospital staff in advance for my nosiness and general untrustworthiness. I believe that she is my responsibility and since she will be too small to ask why and what, an advocate is completely necessary at all times. I wouldn't leave a well child at home alone to go out and have lunch or run errands.

It's hard to complain about being pregnant now...with my back hurting and legs starting to swell when I'm on my feet too long. Because I know that she's safe and happy and warm. When it's time for her to come, she'll be on her own. There won't be a single thing I can do for her anymore...and as a parent, that's scary as hell. Most of you reading this will eventually be taking a shift or two helping with Parker. I'm grateful in advance. Parker worries me because he's very smart. He'll have everyone trained to feed him candy beans and french fries on command. He will be staying up until 2am watching Family Guy drinking Mountain Dew with a smile on his face.

All of this being said, I just needed everyone to understand what's going on and how we're adapting and how (I'm speaking for myself now) I expect things to go down. I'm sure I won't be the only one spending nights in the hospital, but when Matthew goes back to work... we have to be realistic about the commute and having at least one parent at home for Parker's stability.


  1. Hi, Lauren! I just wanted to officially introduce myself and let you know I will be following your journey and lifting you and your sweet girl up in prayer. Sounds like you have the right mindset as far as how things will go once your baby is born. We were very conservative and even though we were told 3-4 weeks after the Norwood, we planned on 8 weeks. That way we hopefully wouldn't be disappointed! And you're absolutely right about being your baby's advocate -- ask all the questions you want and feel free to question their processes/procedures to be sure your daughter's best interests are the forefront of all decisions. You are her voice!

    As you well know, there is a HUGE community of heart moms who are here for you to support you through this journey. Please don't hesitate to reach out to us when you need to.

    ((Heart hugs))

  2. Impressive Lauren, you've been doing your homework! Knowledge is power, even if it annoys some nurses. :) Hang in there, you're doing great. A practical tip: keep a binder of all records, bills, etc for Parker, you will soon be overwhelmed with all of the paperwork, so its better to get one started in advance. We're full of tips, so don't hesitate to ask questions or request feedback - or tell us to shush :)