Jimmie is doing very well considering what he has just been through. We are so grateful. His situation is that he does not have ANY positive air flow at all in his nose. When all of this happened he was still on 1 liter on the “low flow”. This forces air into your nose. It helps the baby not to have to work quite as hard sucking air in. Because Jimmie’s Doctor’s best guess about this “event” had something to do with his nose- she feels this is the best thing right now. He is having more retractions in his chest trying to breathe this way, but for the most part he is doing really well. The big concern is that this does not make him work too hard.
I think he’s 2 pounds 6 ounces. Which is pretty good. He didn’t go backwards this week. But they are going to watch his weight gain very closely as well as his hematocrit which is still hanging around 36. They like it to be at 40. Pray really hard his body starts making a lot of blood on it’s own. We really do not want to face another transfusion. And that he can keep gaining weight at a respectable pace.
There are going to be issues upcoming to work out related to not being able to put the feeding tube in his nose. Eventually he will need to start learning how to breast/bottle feed and the tube not being in his nose will be an issue. But we will cross those bridges when we come to them. Also they move the tube to the nose because often the baby’s throat gets swollen, red and irritated from the tube. Pray Jimmie’s throat stays safe and healthy. Also a lot of micro-preemies go home on oxygen with a nasal cannula. All of these things will eventually be dealt with.
But the main thing Rachael has decided she will not let go of is, “What happened? And why?” When Jimmie gets big enough and is able to tolerate more testing this will be pursued. We might never know for sure. But there are things that can be ruled out. Since we don’t know exactly what happened and why- we can’t know for sure how to prevent it from happening again. That is very worrisome to us! Jimmie’s Doctor said she has seen unexplained bleeding in Preemie’s many times, but not the way it presented with Jimmie. He suddenly started screaming like something HURT. Carolyn (Jimmie’s awesome nurse) has said that in the 20 years she has worked in the NICU she has never seen that happen- the way it happened- to Jimmie.
Last Saturday when they first tried to put the feeding tube in his nose- Rachael (if you remember) had taken her first day off from the NICU. She feels terrible now because she had already decided she was not going to allow the feeding tube to go in his nose. Kathy- (Justin’s mom) said Jimmie was crying really hard as they tried to get it in one side, failed and then put it in the other side. We think this could have been the start of the event. Although his nose being compromised and in trouble has been on our radar for weeks now. Rachael and the rest of us “family doctors” (-: think it was vascular and probably a rupture. But cysts, tumors, congenital malformation all of these other things need to be ruled out. So just pray for there to be - in time- some answers. And pray that in the meantime Jimmie stays safe and that we are taking all of the right steps for this to NEVER HAPPEN AGAIN.
Justin held Jimmie for a couple of hours today. Daddy and baby were very happy and content. Rachael is extremely relieved right now, but understandably nervous about the lack of answers.
Praise God that Jimmie is doing so well. Thank you Lord for being with us and for your faithfulness.