About

Nothing prepares you for a 6 months and 24 days long hospitalization; for six surgeries in the first four years of life; for countless other procedures, numerous complications and a life of two steps forward, one step back.

Nothing prepares you for the amount of hope and disappointment, for the happiness and fear, for the anxiety as you breathe, for the restlessness while you sleep and the nausea when you eat. You just know you have to do all that. You have to eat, shower, sleep. You have to hope. You have to keep breathing.

This blog won't prepare you either. Your path is unique. But you are not alone.

I hope to build a community around these pages; a community of moms doing their best to give their children with Fontan hearts the highest quality of life they can achieve.

I cannot and will not tell you that everything will be ok. Because, it might not be.

I do know, however, that you can do it! You can handle it. You can breathe through it. Because I saw mothers doing it every day. And because I did it.

And if you feel like you cannot go on; like you will suffocate in your tears or break from your numbness, I hope these pages will offer some solace.

I hope to gather a pool of experts around these pages; experts that will be at your service, answering your questions, soothe your worries and support you in caring for your baby.

Emanuela was born on January 18, 2018 with a single ventricle heart. That is a simple version, for non-geeks. But her official list of cardiovascular and non-cardiac diagnoses goes on (nerd alert! :) ): transposition of great arteries (TGA), ventricular septal defect (VSD), pulmonary valve atresia (PA), central and peripheral pulmonary stenosis, resuscitation, ECMO, cerebral haemorrhage, cerebral palsy, slight psychomotor delay, temporary adrenal dysfunction, recurrent nerve paralysis and dysphagia - feeding problem, jejunostomy, supra-ventricular AV re-entry tachycardia (concealed Wolf-Parkinson-White syndrome, concealed Kent), AV block grade 3, volvulus, iatrogenic (neurological injury) post radiofrequency ablation and pacemaker placement.

By now, some of these were fixed, removed or she recovered from them. But this is a rough summary of what we went through.

By sharing our experience, I hope to provide ideas on how to spend quality time with a bedridden baby and to share knowledge on how to make the life of a deprived child better, one day at a time.