Overdue Update

Ella

Ella's really growing up and getting big!   She's still on the nasal cannula and her feeding tube is now in her nose.  She looks great!!  Now we can see her full face. She can suck on her pacifier, and she's not wasting calories trying to pull it off her face like she did with cpap.  CPAP was so much more work for us and the nurses.  It was so hard to fit it to her face and head and to keep her nostrils sealed around it.  Nasal cannula just lays in her nostrils.  Her oxygen requirement through the cannula is very minimal, usually about 25%.  (Our room air is 21% oxygen.)  They've also turned her thermostat off in her incubator. They set the temp now and are slowing bringing the temp down so that she can learn to keep her body temp up.  She still in the incubator though and not yet in an open crib.  She's wearing clothes now too! 

Since the CPAP hat gave her a pretty severe conehead, her PT and her OT gave her a little donut/halo thingy to lay her head in.  They come twice a week to check her out and stretch her.  The halo helps her balance her conehead so that she can lay directly on it and correct the shape.  It's a little big for her so she's actually able to scoot away from it.  Then she sometimes gets her chin in her chest causing her oxygenation and heart rate to fall.  We try to use it just a little every day.  It actually is helping a lot.  She looks much better. 

Ella is up to about 25 ml of milk every 3 hours.  She now weighs 3lbs 4oz.  Here's Ella!!

Luke

Luke is improving, but he had one big scare over the past two weeks.  One night he dropped his heart rate so low that his nurse had to had use a hand pumped bag in an effort to bring him back up.  (Basically giving him CPR.)  She still couldn't get him to come back, but the neonatalogist came quickly.  He was able to bring him back up by bagging him really hard.  Thank goodness!  It was very scary for Kristen.  :( 

Apparently Luke and Wilson have matured enough now that they are much more aware of the tube down their throats.  If it's not in just the perfect spot, they clamp down,  refuse to let the vent work, and just plummet.  The hand forced air pops them back open and brings their numbers back up.  We went through a couple days of Wilson and Luke having to be bagged multiple times a day. 

Since birth Luke hadn't made much pulmonary improvement, so we took a big step and started steroids.    About two weeks ago they attempted to take him off the oscillating vent and put him on the conventional vent. That lasted for two days before he had one little mucous plug in his vent tube that caused a desaturation of oxygen in his body so severe that he couldn't quite recover from it.  He had to go back to the oscillator.  After that he just remained stagnant.  Dr. Maylock talked to us about the pros and cons of giving steroids to babies like Luke.  Apparently some time ago they stopped using steroids on newborns because it was thought to cause CP.  Typically these babies were on long courses of steroids.  Now medicine has swung back to using steroids on babies who are a few weeks old (not just born) and for just 3-5 days.  So we decided that since Luke was so stuck in a rut, we should give him the 3-5 day dose of steroids.  Kristen had just read some blogs about kids with severe BPD (Luke has severe cystic BPD) who were really helped by them.  After 3 days he went on the conventional vent and has only been at 21% oxygen.  The best thing about the conventional vent is that he can receive albuterol and pulmicort through the vent.  Now we can focus the steroids right on the lungs, which is perfectly safe for him.  Also, he could not be held when on the oscillator.  So now that he's on the conventional vent, Kristen held him for the first time tonight!  Here's Lukey!

Mommy holding Luke for the first time.

Luke is up to 7 ml of milk every 3 hours, and he now weighs 2lbs 5oz.

Our Little Lukey

Wilson
Wilson has made some great improvements! Last time I wrote he had just been placed on CPAP.  Wilson lasted about a week on CPAP before they tried him on nasal cannula.  After just one day on the nasal cannula, he just ran out of steam.  We were so upset!!  They put him back on CPAP, but he didn't even have the energy for that anymore.  He had to be reintubated.  We let him rest up for a week and pumped him full of albuterol, caffeine, and pulmicort.  Tuesday they put him straight from the vent to the cannula!  He is doing very, very good on the cannula this time!  Every time they go to the cannula, it's like "the big reveal"!  We have no idea what they really look like when they're on the vent or CPAP, so the cannula is so exciting. 

Wilson did give us a scare by not putting anything in his ostomy bag for 10 days.  In other words, he didn't poop for 10 days.  We were very nervous about it.  Finally he came through.  Whew!  Because of his intestinal issues, Wilson just had milk for the first time today.  He started off with a couple of days of pedialyte, but now he's getting 3ml of milk every 3 hours.  They're only going to increase his feeds very slowly to be certain his bowels are working right. 

Wilson is adorable!!  We're still trying to get a good picture of his double chin.  This kid is gaining weight right before our eyes.  Wilson is 2lb 12oz.