And another step back

Yesterday morning around 3 a.m. we get a phone call from my parents (they were staying the night at the hospital) and then a nurse practitioner telling us to get down to the hospital fast.  So Tom, Declan, and I hurried downtown.  When we got there we were met by the doctor and told that for some unknown reason, Lucas had crashed suddenly.  He received 3 epi shots and that got his heart rate up and they did some chest compression and got him stable again.  The doctor told us that she could tell we had a tough little guy because he was fighting back and helping them out.  And this morning around 4 a.m. we got the same phone call.  Lucas had crashed again.  This time they were able to get him stable with 1 epi shot.

We all ended up staying the rest of the night at LeBonheur.  My parents, Tom, and Declan went home later and I stayed the rest of the day at the hospital.  I talked to the doctors during rounds this morning and they said they don't think he is stable enough for surgery this week so it will be postponed until he recovers from this.  My heart kind of sank because he was doing so well and now this.  And he really needs this surgery to get any better.  A lot of people have asked me what exactly Lucas has.  He has a tracheoesophageal fistula (TE fistula), esophageal atresia, a small blood vessel between his right lung and heart, and he was born with a right lung that is about 1/2 the size it should be.  The TE fistula is an abnormal connection between his trachea and esophagus.  This is what's causing stuff to get into his lungs from his stomach.  The surgeons will clip the fistula and repair it so that it separates the abnormal connection.  Esophageal atresia is when the esophagus is basically an empty sac and doesn't connect to the stomach.  He will have to have surgery to connect his esophagus to his stomach.  They will most likely put weights in both the stomach and esophagus to stretch them closer to together and then connect them.  He also has to have heart surgery to fix the small blood vessel between his heart and lung.  It is very overwhelming thinking about all that Luke is facing.

I'm trying to stay positive through all of this, but sometimes it is just hard.  I look at my little boy struggling through all of this and it just breaks my heart.  It is every parent's nightmare seeing their child so sick and struggling.  Some days I can be positive and some days the seriousness of it all just gets me down.  I'm terrified.  I would give anything in the world for my baby to be better.  If I could give him my lung, I would cut it out of my own chest.  I think a lot of people think that because there are improvements that everything is ok, but it isn't.  He is very critical and the doctors remind us of this every day and always tell us the worst case scenario. I know they do this so that we aren't surprised by anything, but now I dread talking to the doctors because I'm afraid of what they are going to say.

For all of those that are praying for our babies, please pray specifically that Lucas gets stable enough for surgery.  He needs this surgery to survive.  It is a life saving procedure that needs to be done soon.  Pray for the doctors and surgeons.  And pray for twin brother Miller, that he keeps doing well.  Miller is almost up to full feeds now and he is tolerating them well.  He has had a couple of times where he has spit up, but those times are few and far between.  If he continues to tolerate feedings well, he will try a bottle this week!