Update! FPU!

OMG! Finally, a much needed update on Lincoln's progress!

Lincoln has gotten so big! He was 8lbs 12 oz on his second month birthday! (tenth percentile for weight, length and head circumference, but he is steadily gaining.) He is just ovevr 9lbs today! He Is getting chubby cheeks and fulling out nicely. He looks healthier everyday. His incisions are all fully healed from his ECMO and his hernia repair surgeries.

Lincoln continues to do well with bottle feeding. He started taking his full volumes by mouth And was gaining good weight, so the docs allowed him to feed on demand via breastfeeding ( without supplementing via gavage) while I was at the hospital. After a few days, they also switched him to on demand with bottles too. Once the docs saw he could eat like a champ, they removed the feeding tube!

At the begining of August, Lincoln was switched to be under the care of the Red Team (there are three other teams of docs as well, blue, green, and yellow.) The red team is also known as the "Discharge Team!" We were very excited to hear this because it meant Lincoln was doing very well! The red team is very oriented towards going home and helps streamline everything needed for that to happen. It is run mostly by nurse practitioners with an attenting neonatologist overseeing everything. The approach is more laid back since the patients are typically doing very well and need less attention. The team told us they would be relying on our input since we know Lincoln the best.

With the switch to the new team, things took off. Last Saturday Lincoln's oxygen flow was turned down to 1.5 liter at 30% oxygen. This was a huge step, since any flow under 2 liters is considered "low flow" and does not reqiure high humidity. (This was a requirement for discharge. Lincoln had to be off of the high humidity since no equipment at home can offer that.) Linc was doing great for about two days and then his feedings began to decrease. He got down to taking only half of what he normally does and since he doesnt have a feeding tube anymore, he was just missing out on calories. The nurse practitioner suggested going back up to 2 liters on high humidity. She said his inability to eat could be a sign that his body is working too hard to oxygenate itself and he needs more support.

I was crushed by all of this. I didnt even realize how excited I had gotten about Lincoln's latest oxygen wean until someone mentioned that he may not be ready. Since it had taken three attempts to get Linc off of the high flow, I really didnt want to put him back on it. I asked if we could try to keep him off the high humidity and only turn up his oxygen to 2 liters at 50% while eating only to see if that would be enough support to get him eating again. It took a couple of feedings to see the change, but it worked! I was so pleased Lincoln making good respiratory progress. He had already done so well with advancement on feedings.

Then, last Wednesday (two days later) Lincoln's surgeon thought he looked great when she did her morning check up at his bedside, so she turned his flow down to 1 liter (the final requirement for discharge)! He was switched to 100% oxygen since that is what is available at home. (100% at a low flow of one liter is about the same as breathing 30% as compared to 21% room air. Since the flow is so low, linc just gets a whiff of the Os through his nasal cannulas.)

That evening at the hospital, Lincoln's nurse said that he had passed his hearing test ( another great accomplishment for a baby that was on ECMO!) and that we should bring in his car seat since it didnt look like he would he here long! She also asked if Dan and I would like to stay with Lincoln for 48 hours in the Family Participation Unit (FPU) on Sunday and Monday. The FPU is a room in the NICU with a bed, bathroom, tv and microwave. The FPU is a place for parents to practice caring for their little one before going home, with the equipment and med schedule they will be on at home, too. So Dan and I spent the night with Lincoln for the first time together last night. Things are going great in the FPU. It was an adjustment, and will be again at home, but we are getting along just fine. The nurses just bring Lincoln's meds when we call for them and get anything we may need. Dan and I are on our own from now on!

My, how things change so quickly! Just Monday the nurse practitioner was talking about going back to high humidity, and now Dan and I are just one night away from bring home our boy! At last after 81 days in the NICU!