"Dade's off of the refrigerator!"

Its been another big week of updates and things to quickly share.  I realized that we haven't even told many of you that Dade is no longer on the ventilator! Last Saturday we received a call from Dade's nurse to let us know that they were planning to take him off of the ventilator once we could get to the hospital.  We were so excited and couldn't get there fast enough!  He has been a different child ever since.  Dade has been more content and comfortable and that has been a joy to see.  Him being extubated also means that we can finally hear our little boys cries and sweet sounds.  His cry was weak and hoarse for the first few days, but is now stronger.  One of my friends was sharing with me that her children have been praying for Dade. Her son prayed "Thank you God for taking Dade off the refrigerator."  We are honored that your children are praying for our Big, little miracle.

Here was the tube down his little throat...

Here he is without the ventilator! This was him on CPAP after the tube came out. He is now just on a regular oxygen nasal cannula at 2 liters per minute.

Many of you are now asking "When is Dade going home?" We love to think about getting him home, but we have a few more obstacles to overcome before we can even get excited about that.  Dr. Anderson has stated that without any major hiccups or new issues, we should be atleast half way through this journey in the NICU. We are 66 days in...

To Do List to get home: 
1) He has to continue to do well on just the oxygen.  They will continue to wean the amount of oxygen as his blood gases are good.  It is a very big possibility that we will go home with oxygen and we are comfortable with that.
2) Dade has to come off of his sedative drug, which we are very close to, and off of his methadone.  At 5pm and 5am, he usually has a little fit as he waits on his 6:00 dose of methadone.  They will have to wean that slowly.
3) Eat! CDH babies are known to have issues with their feedings.  Reflux is usually a big factor and some babies have an oral aversion.  Its foreign to them to have to suck, swallow the milk, and have to continue breathing well during all of that.  Dade is now having occupational therapists work with him on learning how to take a bottle.  He was able to take 8 ccs on Thursday and 7 ccs on Friday.  Dade has had some spit ups, but its primarily when he is very upset or when they have just increased his amount of milk that he is getting.  We are now up to 55 ccs every three hours. 80 ccs is our goal for him to be on "full feeds" and no longer needing the supplement from TPN. If Dade is not able to take the full amount of milk by mouth every three hours, it is possible that we could also go home with a feeding tube.  It would be called a "g tube" that is surgically placed for him to receive feedings to supplement what he could take by mouth.  The nurses will give us extensive training with this and make sure we are comfortable using it.  DJ and I know that if it means that we get him home faster, we are willing to do whatever is needed.  Some of my patients have feeding tubes and am familiar with it if he needs one.

This past Wednesday, September 24, Dade turned two months old!!!  We can't believe how big he is and how much he has been through.  Two months seems like 2 hours some days and then 2 years on others.  One reason we write this blog is to keep a log of his obstacles, when they were, and what all he has overcome.  We are amazed and so proud of him.  The minute he was born the nurses called him "feisty."  I truly feel like him being feisty is one reason he is here with us today. Dade has been a fighter in every since of the word.

Last but not least...
As you know, Cold and Flu season is fast approaching.  This means flu shots and Vitamin C for some, but for babies with CDH, this means very serious business.  Dade was a little lethargic yesterday and not quite himself last night.  We were honestly concerned if he was starting to get sick.  The nurses were watching him closely last night.  He was back to himself today, but the nurses have talked to us this weekend about needing to limit guests. We don't want to take him home a day earlier than he is ready, but we also don't want to stay a day longer if there's a way to prevent it. It has meant the WORLD to DJ and I to have each and every one of you come visit.  It has given us some normalcy to at least see our friends/family and give us a bit of socialization.  However, it is now time that we limit visits to family only.  We can not risk him getting ill while he is still so fragile and only has one good lung.  As the nurse stated, "a common cold can put him back on the ventilator."  Thank you in advance for understanding as we've had to shift gears with visits.  We are praying for a calm flu/rsv season and that in the spring/summer, Dade may be a little less critical and sensitive.