The Latest

Our darling little Champ is just that, a champ! He's been through so much, but God continues to pull him through, and Judah just keeps hanging in there! 2 days ago he finally reached extubatable levels on his vent...meaning he was finally breathing the same level of oxygen that we breathe (21% , or room air) and he got down to the lowest possible vent settings. It was a beautiful thing when the nurse practitioner came in 2 nights ago to wean his vent settings a little more after a great blood gas came back, and she couldn't! There was a little celebration in his room over that:) Now that we're finally past the hypertension we're trying to process and work through all of the health problems that we're learning about. Thankfully, Judah is at the perfect level of hydro cortisone and his thyroid med. (can never remember the name of that one) to replace those hormones; and other hormone replacement therapy won't come until later. The opthamologist did an eye exam yesterday morning, and Judah's eyes looked normal - praise the Lord! There's nothing to be done about his brain right now. Bottom line is that it just didn't form properly. He developed large ventricles and his pituitary gland is in the wrong place and underdeveloped. Time will tell if that will mean developmental delays for him, or anything else. His cleft lip/palate are at the bottom of the list, but we have started talking about oral feedings for him...that is what will keep him in the NICU for up to 2 months. He has to learn how to eat. My long term goal is exclusive breastfeeding; my short term goal is using a combination of nursing and the Haberman bottle (special for his palate), so we can at least get him home. The LC and one specific nurse practitioner have been extremely supportive and encouraging about the breastfeeding. They both believe nursing Judah exclusively is a reasonable goal. It will take time, patience, practice, but my prayer is that we'll get there. The big thing now seems to be his kidneys and other urology concerns. The urologist is trying to buy Judah some time by attempting to stretch him out a bit with a bigger catheter so they can do the telescope procedure to break up the valves. Rerouting the bladder to drain out of his abdomen would be a more invasive surgery, and of course, we'd rather avoid the VCAG bag, too. I'd much rather my baby boy be able to pee into his diaper than into a bag. So, time may be Judah's best ally right now. We'll see. The Nefrologist came by yesterday to start Judah's file. Apparently, Judah's kidneys are a more complicated problem than we understood at first. Because of the combination of the reflux and valves, Judah's kidneys developed abnormally, and are not functioning properly. There's been some improvement since birth, but we don't know if he'll ever have completely healthy kidneys. One of the consequences of these 2 conditions is that Judah's kidneys will make urine constantly, regardless of getting sick. When we're sick, our kidneys slow way down on the urine production to help protect our bodies from dehydrating. Judah's won't do that, so he runs a much higher risk of becoming dehydrated and needing to be specially hydrated during a bout with the stomach flu, a fever, or even the common cold. Not encouraging news when there are 3 other germy kids to live with. And one of them in school. I'm trying not to think ahead to things like this...it's extremely overwhelming and discouraging. Grace for today. That's the key. Judah is teaching us so much about taking each day as it comes, moment by moment, hour by hour, and just trusting God to provide the grace needed for that day. It's a hard lesson, but a very worthwhile one. And we have the privilege then of seeing God extend His grace to us over-abundantly, in ways we never anticipated!