Home Sweet Home

March 16, 2011 - 1st Day home



They finally meet




First picture of all 4 of us !



2 weeks and 2 days passed by since John's Norwood procedure (for those non-heart parents, its the first open heart surgery) and 20 days old and the doctors were confident that we could take him home. They all agreed he has recovered nicely and I'm competent enough to properly care for him. This baby comes with a special instruction manual and I spent two full days and nights learning how to do it all. I now know how to  check NG tube placement, how to place the tube in, how to administer 5 types of medications, how to begin teaching my son to eat by bottle and feed by NG tube, how to work a pulse oximiter machine, etc. It's not an easy job but one I will never complain about doing. I'm just glad to be able to hold him, which he took to fondly I may add, whether it's me or Joe, this baby LOVES to sleep on our arms. We love it too, however he did spend the entire night in his mini crib/ bassinet in our room sleeping, minus the time I had to wake him up to feed and change the diaper.  It was also nice to spend the night in my own bed as opposed to the very nice to have but uncomfortable to sleep on futon that the hospital has in the kid's rooms for parents who spend the night. 

Emily was quite happy as well. She got to meet her little brother the day before on Tuesday in the hospital. Her innocence looked past the beeping machines, feeding tube and the IV line on his head and was SO happy to finally see this baby brother we were all talking about.  It was amazing to see her smile and be so excited.  However the next day when we brought him home, though she was also happy and excited, she was also more needy, wanting her paci for more than sleeping and wanted to keep forcing her baby brother to take his paci, which he doesn't take unless he's hungry.  Today, the second day in, she's a little better and that is to be expected. I know it was going to be hard going from one to two children, but between the fortifying, pumping, feeding, administering meds and getting the baby to sleep, leaves little time for Emily time with mommy, so I don't blame her for her behavior and only wish it gets better for all four of us. 

Back to John, he has done well at home for the first 24 hours and so have Joe and I.  We got decent amount of sleep and the house is not a complete mess yet, I have much more to do in order to organize our new normal routine but baby steps is our theme lately.  I prepare a 24 hour chart that points out each feeding time, medicine time, wet diaper count, vomit time, pulse ox spot check and a space for notes.  All this will be on a quiz later when the home nurse comes and visits 3 times a week.  I didn't pass my first quiz today because I did not have the exact amount of wet/soiled diapers John has had since we came home but I will not be unprepared again !!! I am also working on putting together John's binder of information we have received including the paperwork from the hospital, nurses, doctor visits, medications, etc.

We are pretty much sequestered at home with John as he has strict orders from ALL cardiologists on his team to stay away from public (germ infested) places and from allowing sick visitors. As we became OCD now, we purchased loads of hand soap and gallons of antibacterial hand sanitizers for us and foaming fun ones for Emily.  It just so happens that Emily just began to cough and have a sniffly nose since yesterday and I have to call the pediatrician to make sure I don't have to come in with her. I was ok'd to take John for limited walks around the neighborhood and on the back yard when it gets nicer outside. We do have a cardiologist appointment next Thursday and of course that is a necessary outing. 

For now we will try to work on a routine or "organized chaos" as most heart moms call it and hope I don't end up medicated as well as my sister likes to call it.

We are also still praying and ask for your prayers that he continues to do well, grow and prepare for the next surgery. God has proven to be good thus far and we continue to ask for strength for John and for our entire supportive family who is on this journey with us.