i know my blog has been a bit sporadic and when i do post it’s usually about the tiny love dictator that robs us of all sleep but melts our hearts all at the same time… but that is seriously 90% of my life right now. sure in between feedings, poo poo changes and pumping i manage to put a hunk of meat in the crockpot for dinner but not a whole lot else going on.
photo: kristin jones
this period in life has been unexpected and different than what i thought it would be and i’m not sure how much of that is the typical newborn stage and how much of that is due to otto’s heart condition. either way though i’m learning to enjoy it and savor it and snuggle him while he’s still so small.
we’ve been working the last few weeks on getting his weight up. up until last week we were feeding him strictly breast milk what he could eat through the bottle and then when he tired we NG tube the rest. we then raised the amount he was eating and we still were not gaining weight like we were supposed to. maybe a half ounce a week. which to ottos credit at least wasn’t backwards but not even close to the growth rate he should be. we started mixing in a special supplement with the breast milk to give him an extra boost of calories and it worked! he gained 11oz last week and then another 5 this week! i’m actually nervous/excited for our cardiology appointment next week to see what they say about his progress.
in terms of ottos actual feedings he’s been eating more and more on his own. he’s even finished an entire bottle on his own. we’ve been working on his refluxes too. poor little kiddo starts coughing and puking the second you lay him on his back so we ordered a crib wedge and then have been using that fisher-price rock and play sleeper to keep him propped up. that seems to be greatly helping him in terms of keeping his food down but that pesky reflux cough just won’t leave us alone. we started a medication for that two weeks ago and i’m thinking it might get changed up a bit at the next appointment because it really doesn’t seem to be doing anything so far.
other than that we are staying the course and working on getting big. that might change at our appointment next week but stay tuned. we are really hoping to get some idea for his future in terms of surgery but i’m not holding my breath and (trying) to be patient. i know that the older and bigger he is the better off we’ll be in terms of success and minimizing a second surgery but i just want to put this behind us.
thank you all so much for sharing your stories, prayers and well wishes for otto. i seriously do not think we would be in as good of a position as we are now without them. thank you!