Climbing the wall of worry

One of the nurses yesterday said, "We never stop worrying." She meant that parents, nurses, and doctors, never stop worrying about all the little (and not so little) things that can go wrong.

Even though Aidan has been doing really well, we worry about:

- Heart Murmur: Dr Mischel yesterday said she did hear more of a murmur in Aidan's heart beat yesterday. Ever since day 4 or 5, the "swooshing" sound of a murmur has come and gone. A murmur could mean that Aidan has "Patent Ductus Arteriosus" (PDA):

www.nhlbi.nih.gov/health/dci/Diseases/pda/pda_what.html

www.healthsystem.virginia.edu/uvahealth/peds_cardiac/pda.cfm

Often, PDA will correct itself, and nothing will need to be done. But if it doesn't Aidan could need a procedure where they would surgically close the duct in his heart. Many preemies have this problem, and need the surgery to correct it.

- Hernia: Dr Mischel also said yesterday she is pretty sure Aidan has a small hernia. She told us the same thing Dr Kaempf told us a week ago, that they don't do anything about this now, but sometime around when Aidan comes home, they will repair this.

- Swollen Nasal Cavities: Tom the RT last night mentioned that Aidan's nasal passages were swollen, and he did have slight bleeding from this. This is caused by the irritation of having his nose suctioned every 6 hours to keep it clear for breathing.

- Increased Oxygen Spells: Over the last week or so, Aidan's oxygen levels have become much less stable that they were in his first 10 days, and they have had to increase Aidan's supplemental oxygen to try to combat this. Some nurses tell us it is worrisome that he was doing better in the past, and that this is a downward trend in his overall state, so they try to look for a cause. But other nurses, and the doctors, don't say this, but say it is expected for a 31 weeker to have issues like this, and all of this is expected. My take, is that over the last 10 days, they have taken Aidan off of IV food, and have dramatically ramped up his milk that he needs to digest. His body is working *so* much harder now than it was 10 days ago. I also notice that many times, especially after he is fed, that his breathing becomes erratic. I think he is burping up food, so he is not breathing well because it burns.

- Apnea Spells: Two nights ago, at 4:20am and 4:30am, the nurse recorded that Aidan had heart spells down to 70 beats per minute, followed by a stop in breathing, and Aidan required stimulation to recover. Last night, she mentioned to me that because Aidan is having these problems now that he didn't have before, she was concerned that he could be developing sepsis.

- Retinopathy of Prematurity (ROP): Premature babies can end up with abnormal growth of the blood vessels in the eye due to getting excessive supplemental oxygen, which can lead to retina problems.

www.nei.nih.gov/health/rop

This is why when Aidan is on extra oxygen, they try to keep his level between 80 and 95. Giving Aidan too much oxygen can hurt his eyes. At some point soon, they will give Aidan his first eye exam.

I do think that Aidan had a much better day yesterday, than he did 2 days ago. I think this is because they increased Aidan's CPAP pressure (from 4 to 5). This is going the wrong way from weaning him off the CPAP, but Aidan needs the increased pressure to help him keep his lungs open.

Hopefully, Aidan will again have a good day today. We'll find out soon, Denyse, Linda and I are about to head off to the NICU.