Our first week home has been a little chaotic between round the clock meds, tube feedings, withdrawals symptoms, missing meds for her wean, all culminating in a trip to the ER Sunday morning because her G-tube came out (apparently there was a hole in the balloon that holds it in place 🤦🏼♀️). All that said we are so happy to be home, to be together as a family again.
We are trying to find our new normal and a rhythm…it is definitely not easy. John and I are both exhausted from being in survival mode for so long now. The boys are such troopers and have handled this trauma better than I could ever have hoped. But they definitely need the extra cuddles and love to help them feel more secure ❤️
I am going back to work this week after a 2 month hiatus. While I am excited to see my work family again, I am nervous to be leaving Emma and the boys. The last 5 mo the have felt like a blur and I am trying to process that in 10 days Emma will be 6 months old. I kinda feel I have missed her whole babyhood to hospital stays😢 I know it was unavoidable, but it’s so hard. But I am learning to find the bright spots in the darkness. My biggest win since Emma came home is that we have been able to nurse (it’s only a few min here and there, but it’s more than I honestly hoped I would get). I feel so incredibly proud of her and myself for making it this far on our pumping/breastmilk journey.
Emma’s cardiologist appointment was yesterday…she is doing really well. The echo saw mild to moderate regurgitation through the valve they fixed, which is not as good as immediately after surgery but soooo much better than before her second surgery. We will likely need oxygen and Lasix for a little while longer. She weighed in at 13lbs and is getting her little rolls back 😊 Most importantly she is obviously feeling better, as her sweet and sassy personality are back in full swing.
Again I cannot thank you all enough…we have been so incredibly blessed in our time of need. There are so many people we want to thank that it would probably take me a whole day to type up. Just please know that even the smallest gesture of kindness was noticed and we are forever thankful. We love you all so much. I will only be posting on caringbridge from now on if there is a medical issue or hospital stay. I will stick to posting my random updates on Facebook.
XOXOXO
The Darr Family
