One week 4 days old - Night

Written September 12, 2013 9:18pm

We left the hospital around 5 today. The day did seem to go by quickly. We had a little excitement as the fire department showed up for a false alarm.

Evan was stable this evening. His CO2 levels were down so they'll be able to lower his vent settings.

Thankfully this evening's visit was boring compared to last night's.

Evan was out of the incubator bubble for a few minutes this afternoon. The day nurse had his goggles off. He looks so different! It's amazing the changes he makes even day to day. I swear his hair grows longer each day (and thicker!) the extra skin on his head is starting to fill in too. The goggles are fitting on his head much better. He does still manage to wiggle out of the from time to time.

One week 4 days old - Morning

Written September 12, 2013 10:33am

Evan is stabilizing. His vent settings are not high like they were yesterday. His O2 is set around 30% (room air is 21%). Last night it was around 90%!

Evan was started on a continuous sedation drip. He likes to become active as soon as his dose wears off. This will help him let the vent do all the work.

The doctors have started him on antibiotics as they await the culture results to see if he has an infection. It's better to start antibiotics as a precaution.

In exciting news, Evan is no longer the smallest kid in the room! As his nurse said "he's got seniority now!"

One week 3 days old

Written September 11, 2013 11:34pm

Sorry for the delayed update - Evan had a bit of a rough day.

I got to the hospital a little later than usual today so I missed rounds. I spent the rest of the day feeling out of the loop. Guess I gotta get my butt out of bed earlier!

After waiting all day, we returned to the hospital tonight to find out that the echo results (from that morning's test) showed the PDA had closed and that another round of Indocin would not be needed. Woot!

I noticed at one of his diaper changes this morning that his belly button nub fell off. Does this mean he's no longer a newborn??

As I mentioned above, Evan had a rough day. We know that he's going to have ups and downs and that we've been extremely lucky up to this point. All day his stats were kind of all over the board. He's usually pretty stable unless he's on his back (he loves being a frog on his belly). I ended up cupping him (one hand on his head, the other on his bottom) for about 40 minutes today. It seemed to help keep his stats nice and level (either that or his sedation had kicked in - I'm going with the mother's touch). Every time I told him I needed to leave, his stats would dip. One of the other nurses in the room said we needed to trick him into thinking I was still there. Using a few weighted pillows, I was able to slip out.

When Andrew and I returned this evening, Evan's blood gasses had gotten a little worse. The doctors made the decision to move him off the conventional vent and put him back on the oscillating vent. Evan's our little jello jiggler again. (Just a refresh - the oscillating vent is much gentler on Evan's lungs. He does require a little more sedation as the ventilator needs to do all his breathing for him. We don't want him fighting the ventilator.) They will take another blood sample in the morning. Today's bad day may be related to a lung infection that will hopefully be treated with antibiotics.

Witnessing our baby go through a bad day is horrible. To just sit by his side and not be able to help or do anything is indescribable. I'm sure Evan's had other bad moments, we just weren't there to witness them. To see the respiratory team, the on-call doctor and his nurse all looking worried, is scary. I wish he didn't have to go through all of this - what a crappy introduction to life.

Andrew should be getting home soon. He called as he left the hospital to say that the last gas check showed great improvement. As long as Evan is left alone, he is a happy camper.

I'm going to focus on the positives from today: he grew up a little with the loss of his belly button nub and he doesn't have to go on Indocin again (at least for the time being). I'm also going to replay those 40 minutes of holding him over and over in my head. Even now, after a crummy night of watching him get poked and prodded, I can smile because I got to touch him and be a mother to him. Even if only for a short while.

What is PDA?

Written September 11, 2013 6:54am

I thought I'd drop a quick explanation of PDA or Patent Ductus Arteriosus.

PDA is very common in premature babies. In Evan's case, we were told that he has mild to moderate PDA. He didn't experience any symptoms of the PDA in the first 8 days of life so they decided to wait it out. The medication to treat the PDA can be harsh on the developing system. As Evan was okay, the doctors didn't want to put him on the medication too early.

Because I'm not a doctor (yet!), I'll let the National Institutes of Health (http://www.nhlbi.nih.gov/health/health-topics/topics/pda/) explain PDA.

When a baby is born with PDA, abnormal blood flow occurs between two of the major arteries connected to the heart. These arteries are the aorta and the pulmonary artery.

Before birth, these arteries are connected by a blood vessel called the ductus arteriosus. This blood vessel is a vital part of the fetal blood circulation.

Within minutes or up to a few days after birth, the ductus arteriosus closes. This change is normal in (full term) newborns.

In some babies, however, the ductus arteriosus remains open. The opening allows oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery. This can strain the heart and increase blood pressure in the lung arteries.

Evan's doctors are monitoring his PDA with frequent echos. He has a follow up echo scheduled the morning on September 11th to see if the medication (Indocin) was effective.

I typically need to know the worst case scenarios (what if the medicine doesn't work, what happens next, will he need surgery, where does the surgery happen, etc). For some reason, I'm taking Evan's PDA on a day-by-day status. It's easy to get caught up Googling other babies and their treatment. Evan is his own little man and he'll do things his way.

Hopefully this helps a little bit with understanding PDA. Just remember, it's very common in premature babies. It is treatable and it shouldn't (won't!) have lasting effects on Evan's quality of life.

One week 2 days old - Night

Written September 10, 2013 8:50pm

Not much to report on this evening. Evan received his last dose of Indocin. Hopefully the echo in the morning will show that the PDA has closed.

Evan spent most of our visit sticking his tongue out. He also continues to suck on the ventilator tube. I hope he can be extubated soon. It seems like he's ready for the pacifier. The nurses will offer the pacifier after each feeding. This will help train Evan to suck so he'll be ready to breastfeed (someday).