#flashback: Bringing our CDH baby home (freewrite prompt - spent and tired)

I could never forget the day we brought our CDH survivor baby back home. Imagine how devastating it was when we were told he had only 50% survival chance and also the excruciating pain we had to bear when we heard many CDH babies gained their wings to heaven during their first week or few months at hospital.

After four months of hospital stay, we were thrilled that we could finally bring our baby home. Few things that we needed to prepare before we brought him home were to raise fund for him bi-PAP (home ventilation to support his breathing which cost RM25000), suction machine to help him suck out mucous daily, learn how to do suction correctly, learn how to resuscitate him in case there was any failure in breathing or apnea, thoroughly clean the whole house so that it was clean enough for his lungs (incomplete one) plus getting his room ready which we were required to have proper power function and good power sockets for his breathing machine as well as trays for it and to keep his feeding apparatus and other equipment in order.

It was a tedious journey to get all these done while also needed to go back and forth to hospital to take care of him. Doctors and nurses had to ensure we know how to take care of a fragile baby at home so that we would not endanger his life. Day by day we were watched of our performance and I strived hard to do it well because I really eager to bring my baby home.

Day in and day out we drank countless cups of coffee to stay awake because he was an every-3-hourly tube-feed baby round the clock. But we were glad to be given chance to care for such precious baby. To us, it was a gift of heaven. And he is still today our miracle baby.

No one would ever believe such thing exist, I mean if I never encounter this, I would never know CDH exists. Unless I am a doctor. How would anyone believe that a baby could be born without a diaphragm and his organs like liver, kidney and intestine were up in his lungs? This sounds absurd to me but I wasn't in dream, it was real.

Nevertheless, he made it and could come home at 4 months old. Days of preparation and much money was spent too for his arrival at home. T'was a worthy well-spent and tired journey indeed. And definitely a memorable one. He is 4 years old today, still kicking the CDH complication. We can never be proud enough to be his parents.

Thank you for reading a little journey of my CDH survivor.

If you do not know what freewrite is, it is a plan by @mariannewest and @improv to just free flow write out our thoughts, where there is no fear of whether what we write is good or not. Just relax and have fun and write in that 5-minutes-time. Here is the introductory post. Come on, you can start joining and have fun too! ☺ And now we have @freewritehouse, yay! Have a visit and you will not regret it!



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