The sun is shining bright here in Chapel Hill, where our sweet boy turns 10 weeks old today! I find myself amazed in looking back on all we've gone through so far &, in spite of so many obstacles, how much Isaac has grown. His red hair has filled in nicely since his grand entrance with a mullet in February. As the sedation meds continue to slowly wean, his personality shows through a little bit more each day. Mr. Personality, he's quite a charmer. But there's no room for guesswork when he's upset or irritated - Isaac lets you know!
On the road to recovery, Isaac is experiencing some speed bumps today. His pH continues to be low & acidotic, causing fatigue & strain on his heart. Respiratory therapy has gone up significantly on his vent settings to compensate. His central line no longer draws back & has begun to leak, so we're hoping to thread a new cath over a wire. Once Isaac is successfully feeding through the G-tube & IV nutrition is no longer needed, he'll only need a peripheral IV instead of a central cath line. Hopefully we can last just a few more days on the line he has as the PICU team has been given the green light to start feeds through his G-tube today. However, Isaac continues to become more edemidous with minimal urine output over the past 24 hours. His liver is somewhat enlarged as well. Isaac's body temp has been low today, so blanket & a neo-natal warmer are being used to help. The concern, however, is that this may be the temperature drop before a fever spikes. Much to pray about.
Isaac has come a long way, but he still has quite a ways to go. Our goals/hopes for today is to rewire the central cath for adequate access & blood draws, establish slow feeds, bring his pH to normal levels, & get him to pee out a lot of excess fluid. Lots of area for prayer. We're so grateful to our awesome God for the time He's given us so far with our sweet boy & for bringing him through so much already. Five surgeries in only 10 weeks of life - that's a lot for anyone to go through, let alone a newborn. We have seen God work in miraculous ways in Isaac's life already & are asking Him to do it again.