It has been almost two weeks since Braden was released from the hospital. The time has been spent getting back into a routine of sorts while trying to fit in lots of doctors appointments, phone calls and meetings. Everyone, it seems, still wants a piece of our little man.
I have become Braden's nurse; It really is a full time job. He has a round the clock meds schedule and a unique feeding plan, that just changed this past week. Braden had been on continuous feeds through his NG (feeding tube) but just started having bolus feeds during the day. I really have to work with him to take formula from a bottle. He has had to relearn that skill, sucking and swallowing without gagging. Plus he is on a funky low fatty acid formula that can't possibly taste good! Braden started on Tuesday taking in only about 10-15 ml of liquid by mouth and then taking the rest through the tube to finish off each feeding. He progressed to about half an ounce and then this evening he actually drank the entire bottle. We were ectastic!!! The best part is he is finally getting into a more normal hunger/eating/ sleeping pattern. We rejoice with every bit of progress Braden makes. And I have to say he has the best lopsided baby smiles!
Next week Braden heads to Seattle for a pacemaker clinic. At a cardiology appointment last week the doctor reported (after looking at some test results) that Braden's heart is still enlarged due to swelling. He has had a fair amount of trauma to his little heart in such a short amount of time. We are encouraged by that news and choose to believe that the heart block condition can still change as that swelling goes down. No one is saying that to us medically because unfortunately there is a tendency to be brutally realistic. Yet, the need for a pacemaker can change and that is how we are praying for Braden, a temporary condition. We are praying for safe travels and a good report for the upcoming pacer check.
On a lighter note, our last family member came home today and now we are really all back together. Lucy, our 2 year old beagle, has just returned from my sister and brother-in-law's house, where she has been since right before Braden's birth. It was very exciting to have her back with us. Lucy was not overly impressed with the baby. She gave him the beagle sniff test and I guess he passed. Now we really have a full house with 4 kids, 2 cats , and 1 dog. HELP!! Really though, we love all the activity and controlled chaos. We are blessed.
-Jenni
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