Tonight I sat in my home office, diligently working away. Caleb was in the kitchen, armed with a bottle, feeding Zoe.
Rewind to earlier this morning… A text message to the cardiologist notifying them that Zoe has not gained weight for the past three days – a difficult thing to swallow (pun intended) for me. The response we received, of course, included a threat of NG tube insertion once again. Being so close to the Glenn, I do not want Zoe in or near a hospital for this procedure. The last thing we need is for her to contract some (other) virus or bacteria. The cardiologist gave us the option to increase her caloric intake with fortification to 27 calories. We agreed, knowing in the back of our minds the increase in fortification also brings increased risk of reflux and gas. Reflux and gas or NG tube: simple decision, but also a catch 22. Increased reflux will likely prevent Zoe from eating the same volume and hence, a decrease of weight gain regardless.Ok, fast forward to tonight… Caleb is in the kitchen feeding Zoe. Mommy is working in the den. I hear Zoe begin to cough. I cringe, knowing what typically comes next. Vomit. I hear Caleb frantically trying to calm Zoe. “Shhhhh, Shhhhh, it’s okay Zoes, Shhhh, Shhhh” (we call her Zoes, phonetically ZOZ.) I begin praying. Hard. I can hear my frantic plea in my mind, as if I'm speaking it aloud. “Please God, don’t let her vomit. Please, let her keep the bottle down. Please God.” I even begin a “no vomit” mantra in my head. At this point, I'm pretty sure I’m sweating.
In that moment, I realized why I’m so anxious (and on edge and cranky and frustrated) all of the time; why my neck feels like cement most of the day. I’m praying like a mad woman that my daughter will not vomit, that she will take an entire bottle. How many parents worry about this every 2.5 to 3 hours during the day, 7 days a week? And this worry is just the tip of the iceberg. As I sit here typing this blog entry, I want to cry. How much longer can I endure this stress? Do I need to institute a meditation practice or get my butt back to practicing yoga in order to relax? Great idea, but when do I have time for that? I barely get work done and am lucky to get 5 hours of shut eye per night.Now, I feel like I need to apologize to you and to Zoe for wallowing. I'm sorry.
I'm sorry, Zoe. I love you and would endure countless loads of stress and worry for the remainder of my life. I wish someone could promise me a lifetime of such. I can't imagine the alternative.I love you Zoe Madison. Please eat and gain weight. I know you can do it. You’re the strongest 3 month old I know.
And, just so you know, my prayers and mantra worked. Zoe kept her bottle down. This time. Three hours from now, I’ll be saying another prayer and repeating my mantra – “no vomit… no vomit… no vomit.”
Stacey... I wish I could tell you that the weight gain struggles disappear. Even with a tube. Owen has always been tube fed and if you give him too much food, he pukes. Not enough, he doesn't gain. It's a frustrating battle and I keep praying it will get easier.
ReplyDeleteZoe is a rockstar. She'll do her thing and gain weight. Just give her time.
PS. If you DO end up needing an NG tube temporarily.. I am a pro at getting them in quickly. Owen had one for 20 months before I made the switch to the Gtube.
ReplyDeleteYou do NOT have to apologize - that's what your blog is for. You have to let it out, you can't keep it inside.
ReplyDeleteZoe IS incredibly strong. She rocks! She comes by it naturally from both sides!!
Maybe there's no time for yoga, but remember to breathe. You're right. It's crazy that you have to worry about something even as simple as every couple of hours whether or not she'll even be able to take a whole bottle without throwing up. I can't even imagine... Do try to keep breathing. And I'll keep thinking of you and Caleb and Zoe (and Emmy too) and sending white light and positive energy.
Wow, I could have written this exact same post last week (ok, not about the reflux, but the "please don't vomit because you HAVE to gain weight" mantra for sure). And I was feeling the same way - wallowing. Stuck in an endless cycle of vicious worry and on edge ALL THE TIME. But this week is a new week and I'm giving it over to God. Day by day. And this is an easier week. I think it's just a struggle all of us heart moms go through - especially between the Norwood and the Glenn. So just know you're not alone. Heart hugs...
ReplyDeleteWe were told that almost all cardiac babies have reflux and almost all of them are on the meds for it- but since your amazing Zoe does not throw up daily that is a great sign as far as reflux goes. It is absolutly amazing that she has not needed the NG tube either so whatever you guys are doing through all the stress is working for Zoe. Keep strong with wanting to stay out of the hospital because if the reflux is bad they will still throw up with the NG tube. You guys are doing a great job stressing & worrying, she looks fabulous! At least all heart moms can say that one thing they have mastered is "worrying"!
ReplyDeleteBreathe darling. She is post Glenn that is huge. Pre-Glenn they worry because they need them to gain weight for their next surgery. She is doing so well. Jake did not gain weight last weigh in but he is also getting longer and kids gain less from 6 to 12 months than they do in the first 6 months. If she spits up once or twice its ok, its normal. As long as she is not losing weight all is well. Hang in there. Love you.
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