We were fully expecting to be in the step down unit until Monday at the earliest but after one day in the step down with eating and even nursing going well, they let us come home last night! It was so great to have all IVs taken out, and all monitors, wires, and feeding tubes disconnected!
They sent us home with three special medicines – a blood thinner, a drug to help pull fluids through the right channels, and heart slowing drug (if her heart beats a little slower, it gives the hypoplastic right ventricle just a little more time to fill so that it can pump more volume and hopefully grow more).
Other than the extra medications we need to give her, last night was similar to the first night at home with each of our newborns – lots of baby cries and restlessness trying to figure out the sleeping easting schedule. Doing that one eye kinda half way open squinted face kinda thing while weighing out with each other the pros and cons of feed vs. binky vs, pick up and soothe vs let cry. But this time it was different - a little easier to recognize the wonder of a night like that. Marveling at the miracle of life and feeling grateful for the joy of having her here.
There are so many unknowns in terms of what happens now. The main hope at this point is that the muscle in her right ventricle will relax allowing the ventricle to grow and more fully develop. We will be monitoring that closely over the next few months. We will go to our local pediatrician this week and back to CHLA the week after to see how that ventricle is doing. If her ventricle does not grow, we will likely be back for another procedure in a few months. If the ventricle does grow, it could be a while before she would need any other procedure.
14 comments:
She's just perfect and beautiful! I'm so happy that you can be home now. Prayers for continued miracles.
Yay Shelby!!!! Way to be a "normal newborn!!" So happy you guys are home!!!!! There's nothing better. Well done on surviving your first few weeks as a heart Mom and Dad!!! You both are doing a remarkable job. Love the pic of Bennett holding the baby. I bet they're all so glad to have their Mama home!!
this is awesome.
Hi. thanks so much for sharing your journey on this blog. We are all pulling for your daughter. Also, a close relative of mine is about to give birth to a little boy with a heart defect. The doctors predict he will need a stent as well, so it has been very educational for us to read about your experience as well. That's in fact how I found your blog - Googling for personal stories on infant stent procedures.
This has been so inspiring to read, thank you for sharing! This is the power of blogs. We just had our fifth and it looks like our children are all about the same ages. It was just amazing to read about this precious baby girl of yours, and about your patience and faith...and the faith of your four other littes at home. Prayers for all of you and thanks again for sharing your story in such a beautiful way.
What a miracle.
She is such a beautiful baby! So happy to hear that she is doing well.
I'm thrilled she's home! :)
That's so exciting you all get to be home together, and so quickly! Shelby is beautiful! We can't wait to meet her! -Justin and Shellee
continued prayers for that precious heart ~
So happy you guys are home! Congratulations!
so happy for you!
Hurray! Hurray!
So glad you got to go home! Congratulations. Hope all goes well. We'll continue our prayers for you!
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