Tuesday, September 27, 2011

What a Day!

I drove down to Seattle this morning, dropped our stuff off at the home, swang by the hospital, and then drove the car to U-village and dropped it off...again. Hopefully third times a charm and it will get fixed this time! I stopped by the hospital real quick to see Cohen before I dropped the car off because I just missed my boy. I got up to the NICU and saw that the results from Cohen's echo yesterday were on the front of his chart. So I peeked and saw that it said that the right side of his heart is now moderately enlarged, which is worse than it was. The Drs were hoping that it would be smaller, so needless to say I was upset and was sure that when the pulmonologist came they would say that they were just going to keep him on the high flow and wait and see what happened. I went and dropped the car off and on my walk back I just had all these questions and thoughts running through my mind. I was worrying and worrying, thinking that I would never get to take my baby home.

When I got back to the hospital Cohen was in his swing but woke up when he heard my voice. So I held him and took a good nap. The pulmonologist, Dr W (that's a lot shorter then writing "pulmonologist" 700 times), came about 4:30. We also had a medical student, a resident, the senior resident, and his nurse in the room to see what he would say. He came in and listened to Cohen's lungs and watched his work of breathing. Cohen does have what are called retractions when he breathes. If you watch his tummy you can see that he kind of has a "pulling" when he breathes down by his lower ribs. I don't really know how to explain it other than that. After he assessed him, he decided to take off his oxygen completely just to see what happened. Cohen did GREAT! He had no oxygen on for about an hour and he never dropped his O2 sats below 90%!! Dr W said most chronic lung babies like him will live at about 70-80% on room air (no extra oxygen on). Cohen even took a big poop with no oxygen on and still didn't drop his sats :) I think he must have wanted to impress his crowd. Anyway, he did really well and so Dr W felt comfortable not only taking him off high flow but changing him to low flow! So Cohen is now on .25L at 100%, which is a level that he could go home at...YAY! They will leave him there to see how he does and check a blood gas Friday to make sure he is still doing okay.

When I asked Dr W about Cohen's heart he said he would be interested hear a cardiologists input on whether the enlargement of the right side of Cohen's heart (RVH) is caused by the lung disease or by his PDA. It really could be either and I have no idea how they would tell, but it's something I may bring up in rounds tomorrow to see what they say. Dr W said that it's not great that Cohen's heart is enlarged, but it's kind of similar to Cohen having chronic lung disease. It does show them that he is still a "fragile" baby. However, at this point there is nothing that they would do to treat it. It's something that will hopefully not get worse and that as his lungs get better (if that's what is causing it) that his heart will get better with time. He will follow up with a cardiologist and a pulmonologist when after he goes home.

{Cohen could barely keep his eyes open after all the action}
I had also heard that the pulmonologists can be a little stingy with feedings. They often want the babies to kind of be "backed off" on their feedings. The UW doctors had suggested doing drip feeds at night where he just gets his food continuously so he doesn't have to wake up and be hungry or get a big bolus of food and have to digest it. This would let him rest a little more and conserve some energy. BUT Cohen gets to keep doing what he's doing and then if he does okay with his new oxygen rate then he will get to advance feedings a little. Right now they just want to see how he does with the lower oxygen before they change too many things.

The UW Drs also had been throwing around the idea of steroids to decrease lung inflammation or adding another diuretic to get rid of any extra fluid and make it easier for his heart/lungs. However, Dr W thought Cohen was doing well enough to not need either of those! Yay!

This morning I was just preparing myself to be disappointed with Dr W's visit and we were actually very pleasantly surprised! It's nice to have a fresh pair of eyes see the situation. And also, Cohen isn't a preemie anymore, he's a big boy. Dr W works at Children's and sees chronic lung babies all the time where as the NICU is used to little tiny babies. It was just nice to have a new perspective and someone willing to try something new and see what happened. I was SO SO SO happy to have him down to a level of oxygen that he can potentially go home on. I was practically skipping out of the hospital. I immediately called my mom because I had texted her when I found out that Cohen's echo looked worse. When she heard that she called my brother and a few of her friends asking them to pray. And they must have, because this day turned out way better than I had anticipated. I don't think I could have handled anymore lack of progress or bad news. We are incredibly thankful for all the care Cohen has gotten at UW and how far he has come, but we are so ready to see him not struggling and to be getting better. It's hard to watch your baby struggle and be sick. We know he will do well when he gets home and we just can't WAIT to get him there. I am feeling a little more optimistic that that may happen sooner than his 4th birthday.

Whew, I know that was long and the bottom line is: we are excited! Prayers have been answered! Please pray that Cohen does well on the new rate and that his heart doesn't get any larger. And for patience for us :)

1 comment:

  1. I think my 'guess' was 8 pounds 12 ounces, so you tell that little bundle of joy to slow down his chunkiness so Jenny can win the weight lottery for going home ;) Pictures are just GORGEOUS and isn't it amazing to see how small the thermometre looks compared to the size of Cohen? He used to be about the same size as IT. Wow. Praise God for the fresh eyes, the amazing professionals, the army of praying family and friends and strangers, and for YOU, Jana.