Wednesday, April 17, 2013

Primary Children's Medical Center

{I'm writing this at Primary's while we wait for Christian to be done with surgery, so I will post pictures later}

From the time they told us Christian would be transferred to Primary Children's Medical Center to the time the Life Flight team got to Valley View was about three hours.

The Life Flight team was awesome.  They intubated the baby at Valley View before we got on the plane.  I left the room when they intubated him - I couldn't watch it.  His body was finally able to relax when they put him on the ventilator.  They stabilized him, got us on the ambulance and took us to the airport.  Both Jake and I were able to fly up with the baby.

{Right after he was intubated}

 {From the Life Flight plane}

My mom was amazing.  She went to our house, did our laundry, packed for us and drove our car up.  She stayed with me the whole two weeks we were there.  And the girls went to my sister's house for the week (they thought they were on vacation!  They love going there).

This was the first time I'd been in an ambulance.  It's the first time I'd been in the hospital with a child, besides the time that Emmy got tubes in her ears.  It was all new and scary to me.

We got to Primary's on a Monday, early afternoon, and went straight to our room in the PICU.  We were in that room for 9 days.  Since the baby was on the ventilator and sedated, there wasn't much we could do.  We couldn't hold him, which was the hardest part.  I told the nurses I wanted to change his diapers when I was there so I could at least feel like his mom a little bit.  And since I'm nursing, I had to pump every three hours and they would give him my milk through a feeding tube.

{Sedated while on the ventilator.  The yellow tube is the feeding tube.  The tape across his face is to hold the breathing tube/ventilator in place}

On Tuesday morning, when the doctors were doing rounds, they told us some shocking news. The night nurse had found a heart murmur and through tests they found that Christian had Congenital Heart Disease/Congenital Heart Defect.  This basically means he was born with heart problems.  I just started crying.  I didn't even know what it meant for him or for us, but I knew it wasn't good.  The cardiologist that was there that day explained everything that was wrong with his heart to us and drew a picture so we could understand a little better.

{The nurse wrote everything down on a white board that was in the baby's room so we could remember everything they told us.  It was a lot to take in.}

Here is the list of things:  Coarctation of the Aorta (coarc), Patent Ductus Areteriosus (PDA), Ventricular Septal Defect (VSD), Mitral Valve Stenosis, Patent Foramen Ovale (PFO) and Atrial Septal Defect (ASD).

They let us know that they would have to perform surgery to fix his coarc, which means that there is a narrowing in his aortic artery, making it hard for blood to be pumped from his heart to his body.  They would have to close the PDA (a vessel that usually closes off when you are born), but it was a good thing at this point that it never closed off because it was feeding blood into his aorta, sort of supplementing his blood flow.  They thought they would have to patch the VSD, which is a hole between the two lower chambers of the heart.  But they weren't planning on doing anything to the ASD/PFO, it should close off on it's own (it's another hole that should have closed when he was born).  And they weren't even going to address the Mitral Valve Stenosis (a narrowing in the mitral valve) at this time.  He's too little to have surgery on it and they are hoping that by fixing the coarc, the mitral valve will correct itself.

This was a LOT of information to process.  We went from a traumatic weekend, almost losing our baby, to things being stable to this.  I couldn't even process it all yet.  I had to get Christian over the RSV before I could start really thinking about the heart issues.  Baby steps.  But we feel lucky they caught his heart issues when they did.  He could have gone a long time before they figured out exactly what was wrong with his heart, which means that he could be really sick.  We found it before it got to that extreme point and we are grateful for that.  Honestly, I would never even have known he had anything wrong with him.  The signs of his heart problems are so small:  sweaty baby (it's hard for them to nurse, almost like a workout, and he did have a hard time nursing, which would get frustrating.  I just figured he wasn't that great of a nurser), sleepy (he was a newborn, of course he was sleepy!), small (he was growing, which is great, but not as fast as the girls had), rapid breathing (I had noticed that he had a hard time breathing, but only in his car seat.  I was always nervous that he couldn't breathe that great in his car seat and would try to tilt the car seat to try to help him breathe better).

From this point on, they had to keep a close watch on Christian's heart, as well as his lungs.

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