I often feel these days that our life as a family is on hold. Or as a friend described it today, it’s in purgatory. These snapshots of our week are a needed reminder toforme that our life is anything *but* on hold. Enjoy.
At the Ronald MacDonald House letting Elijah play for a few minutes before we go back to see Isaiah.
My updates this week have been in brief picture posts, so here’s a little more explanation.
His doctor took off his oxygen and cut his caffeine dose on Tuesday, but he was dipping too much overnight and the nasal canula went back on.
They did a lung study and said it looked good, so he probably just needs more time. Dr. Kahn said he will likely still go home close to Memorial Day, but there’s a chance it will be WITH the oxygen for a few weeks. Depends how he responds next time they try to wean him. They won’t keep him in the hospital if all he needs is a little oxygen.
I am dreading the idea of bringing him home with medical equipment. It’s a simple setup…just the idea of more things to learn, paperwork & authorizations to deal with, stuff to pack if we try to leave the house…ugh.
SO hopefully we won’t have to! It’s possible after another week or two he’ll be just fine without it. Either way, we won’t be at Winnie Palmer too much longer.
Isaiah’s other job before we can go home is to be fully feeding with bottles and/or breastfeeding – no feeding tube. He’s getting this…slowly. It’s still a lot of work for him. He’s drinking some on his own but still has a ways to go.
So, we are nearing the end of our NICU stay and I’m excited about that, but I wouldn’t say it feels like “light at the end of the tunnel.” Coming home will be swapping out one set of challenges for another – but we will get to be together as a family much more, and that part will be amazingly good.
Meanwhile Ava is still adjusting to new seizure meds. Seems to be going okay so far, but she is more hyperactive at night lately than ever…typically doesn’t go to bed till 10:30pm…and it makes for long evenings. Soon 2/3 of the kids will be partying late into the night! Maybe they can entertain each other! If only they could feed themselves… 🙂
My mom is leaving for a break tomorrow. She would’ve stayed on even now if we’d asked, but she has been tirelessly helping us since the end of February, and we want her to get some rest. We are beyond thankful for all of her help.