Judah James Robinson (4/28/12) - The overview

A lot of you might not be familiar with our story so I thought I would share a VERY brief overview of the past few years.  
Josh and I were blessed to have our first baby London Brooks Robinson on November 25, 2008.  We got pregnant again and lost that baby at 12 weeks pregnant (May 2010).  It was a very devastating time for us but God gave us strength and peace to carry on.  Then we got pregnant again and I felt certain that we would not lose that baby but we did at 11 weeks pregnant (April 2011).  Again it was very difficult because we really wanted to have another baby and of course anytime you lose a baby it's heart breaking. The Lord (like always) was so faithful to help us through that time.  We did a lot of traveling during the summer of 2011 and we were SHOCKED to find out in August that we were pregnant again.  Very guarded but very excited about this baby.  Everything seemed to be going great and for the most part I even felt great (when I was pregnant with my daughter I was sick ALL the time). 
On Friday November 18th we went to our Doctor and we were SO excited because we were finding out the gender of our baby.  Long story short the ultra sound tech found some things she was concerned about - Our Doctor  sent us to a specialist and luckily we only had to wait 3 hours! They got us in so fast thanks to Dr. Dorsey who is in my opinion the greatest OBGYN there is! 
Dr. Bombys said our little baby had Dandy Walker but that is all we knew on the 18th.  She sent us to Cincinnati Children's Fetal Care Center where I went through a long and stressful day of tests (November 27, 2011).  After all the tests we met with a team of Doctors, Neonatologists, Cardiologists, Genetic Specialists and so on... They told us that Judah had Dandy Walker which can be mild or severe but there is no way of knowing until they get older. Dandy Walker is where the vermis (in the brain) is either missing or under developed.  The vermis controls coordination and lots of older people have Dandy Walker and don't even know because they didn't use to do Ultra Sounds like we do these days.  It can be so mild where it has no effect, it can make you clumsy, give you headaches, or it can be more severe but like I said there is no way of knowing until they start needing coordination skills. 
They also said that Judah has Transposition of the Great Arteries which basically means that the Left ventricle that pumps the blue blood is flowing where the red blood (oxygenated blood) should be flowing and the Right (Red Blood) is flowing where the Blue blood should be flowing.  Also they said he has Pulmonary Stenosis which is where the pulmonary valve is abnormal (it would kinda be like if you had a water hose and put your finger over half the hose - the water is forced out more quickly). They have never seen a person have transposition paired with just pulmonary stenosis so they told us they weren't sure what the best plan was and that they would have to "put their heads together to come up with the most intelligent plan".  
My pregnancy went by quickly and I found myself wanting him to stay in my belly as long as possible! Our induction date was set for April 15th.  They started the induction at 11pm, my water broke at 2am and he was here by 4:35am! He wasn't breathing when he came out and it was so quiet in the room I didn't know what was happening.  I could see them working on him but no one was talking.  I had to ask 4-5 times if he was alive and all my nurse would say was "he has a heart beat".  God was there!  He kept me so calm the entire time and that in itself was a miracle.  It was also a miracle how fast he came because they didn't think he would tolerate labor and delivery because his heart rate was dropping after my contractions.  But literally I went from 4cm and 60% to fully complete in minutes! Literally pushed for 12 minutes and he was here.  They got him stable and took him to the NICU.  He was transported over to Children's at 7:30 am.  
I came over to Children's on a 4 hour pass to see him (3pm).  He seemed to be doing so well!  A Doctor came in at around 6:15 to say that he might be able to go home in a week or two and then they would want him to come back in a month or two for the Arterial Switch (Switch the arteries).  Literally as she was talking his vitals started going crazy (6:30pm) - All of sudden there were about 25 people in his small room and pouring out into the hall way (We had the day shift workers here and the night crew that was coming on so it was double the people).  I sat down and watched as they worked on my baby boy - for 3 minutes they did CPR - It seemed like 3 hours! He had went into cardiac arrest.  Everything happened so fast but basically we decided to put him on ECMO because they had NO IDEA what caused him to arrest and they were concerned it could happen again and if it did it could be fatal.  Within minutes they were preparing him for ECMO and we were asked to leave the room because it's basically considered a procedure and they need the room sterile (ECMO is a heart and lung bypass).  While they were getting him ready he went into cardiac arrest again but this time they did CPR for 10-15 minutes.  They got him on EMCO and started chilling his body to prevent any of his organs from being damaged (He would be cooled down for 48 hours).  Walking back into the room that night just about took my breath away.  There aren't words to express the feeling of helplessness I felt at that moment.  Such a tiny baby surrounded by such big machines.  The next day (Tuesday) was all about getting him stable and letting his body rest.  Wednesday his lactate and glucose were crazy high (Glucose in the high 500's-600's and Lactate 18 - They wanted his glucose at 120-150 and his lactate below 2) they could not figure out why it was so high.  It's not uncommon given the trauma that he had went through on Monday evening for these number to be elevated but not by this magnitude.  That day seemed to be the day things shifted - We called on prayer warriors to stand with us and pray for Judah - Every single time they would test his glucose and Lactate they were dropping! By Thursday morning he was basically perfect with his glucose and lactate.  On Wednesday night they started warming him back up and throughout the early morning hours on Thursday he had 3 seizures - two that lasted 30 seconds long and one that lasted 3 minutes.  They told us on Thursday morning that there was severe brain damage and that he was not responsive at all and had no gag reflex.  We with thousands of people went to prayer and by 4pm the head of neurology came back up to say "we looked at his CT scan on better screens and we feel optimistic".... GOD DID THAT! He said there was no way of knowing for sure without and MRI but he was on ECMO so they couldn't do an MRI.  
Friday morning a team of Cardiologist met and decided the first thing they needed to do was a heart cath.  Dr. Beekman came in and basically said they were going to look at the coronary artery first and take pictures of that to see if he was even a candidate for the arterial switch and in his words "if the coronary artery is abnormal then the options are not good".  Second thing they were doing was ballooning the pulmonary valve (This is the valve that is like a water hose) and our biggest prayer with this is that there WOULD BE NO LEAKING!! The valve is kinda like a door - The door opens but doesn't open up all the way - so the balloon is like if you were to kick the door in - it would open freely but then you want the door to close all the way - NO LEAKS.  Then they were going to look at the hole on the left side (that everyone has) and if it was to small they would balloon that and make it bigger.  Seeing him transported to the Cath Lab while he was on ECMO was one of the scariest thing I've ever seen! Dr. Brad told the transport team before they left "one wrong move and you can kill this baby".... That is NOT something you want to hear!! It took 32 minutes to transport him down the hall! Kissing him at the door of the cath lab was heart breaking! I just wanted to rescue him! We went to the waiting room and waited... Well, the Coronary Artery was GOOD, they ballooned the pulmonary valve with "minimal leaking" (We're praying for NO LEAKING though) and also ballooned the hole.  Dr. Beekman said it went better than his best expectation!! AND they had to turn off ECMO during the cath to get accurate pressures and he did so well that they decided to call the surgeons and TAKE HIM OFF ECMO for good!! We were so shocked but PRAISING God like you would not believe!!  Since I've lost track of days I can't remember what day he had the MRI but all I do know is it came back NO BRAIN DAMAGE! Praise GOD!! The only thing they could see was that he had less blood circulation then they would want but he also had lower circulation to his body that same day.
The weekend and the beginning of the week were rather quiet and wonderful! Our little Champion was doing better and better every day.  On Wednesday they were planning on taking the breathing tube out but then he had a jump in his glucose and lactate and they weren't sure why.  So they put him back on a paralytic and of course WE PRAYED and those number came down.  They were telling us they wanted the PDA (Ductus Arteriosus) to close and now they aren't sure if that's good or not... it's so confusing.  From what I'm gathering most of the Doctor feel he needs a full repair and some feel they should just close the duct first then go back in later to do a full repair.    
Some of you have been asking WHY Judah's heart is so complex - I am going to try to make this as simple as I can (if that is even possible) - With Transposition & Pulmonary Stenosis paired together it makes it kinda of difficult because if they do the Arterial Switch That means that his Pulmonary Valve would become is Aortic Valve and the Aortic Valve would become the Pulmonary Valve.  They are concerned because your Aortic Valve pumps the blood to your whole body so it's important that that valve is good because it does a lot of work.  The Pulmonary valve only pumps to your lungs so it doesn't have as far to travel and requires less work.  Once he gets older they could put in a artificial valve but it's not an option as an infant.  
Up here in the CICU (Cardiac Intensive Care Unit) you hear lots of crazy stories.  Last week we heard about a kid who had an artificial valve put in and then his body actually grew a valve so they were going to take the fake one out... how cool is that! GOD IS GOOD!! 
Here is where we are - We Trust God! This is by far the HARDEST thing I have ever gone through but I know God loves Judah far more than I ever could!  Sometimes you just have to remind yourself that God knows whats best even when it hurts the worst! WE BELIEVE that GOD CAN heal our son! We believe that he will!  I don't know how or when but I know God is ABLE and I'm standing firm in the belief that GOD will show up and show off :) God has already done so much in the past 12 days and I believe He is going to continue to do more! We have the Firey Furnace Faith - We believe that God is able to deliver us but even if He doesn't we will not bow! 
God is not allowing this to happen as a punishment but instead He is drawing His people closer to him. He is changing hearts and lives and many people have come to know Jesus through Judah's story and he's only 12 days old.  Even before he was born people were being changed by what God was doing in and through our little family.  We are not strong in ourselves but strong in the Lord.  We have no strength in ourselves but ALL our strength has come from the Lord.  We're nothing special and yet God is using our weakness, our trials and our suffering and bringing good things to pass! Our lives are not about us and so often we get focused on it being about us... our lives should be about one thing - TO MAKE HIM KNOWN!  Thats what God is doing here - He is being KNOWN! Even though this is a hard road to travel we are blessed by all that God is doing in your lives! It gives us great joy to hear about how your life has been changed by GOD through Judah's story!  May God continue to draw his people closer to him and reveal himself to the world!  Praying, believing and standing firm in GOD!! 
Thank you to everyone who is standing with us for Judah's healing!  I don't know how God is going to deliver this healing but I'm praying it's through his own hands!  If God allows Judah to have surgery then God will be there to bring him through it.  God has gifted these Doctors and Surgeons and blessed them with ability to help others but like I said - Our God is able - God do your thing :D 


The Proud Mamma of The Strong and Mighty Judah,
Jillian