Thursday, November 17, 2011

More Baby Stuff

This post is for the benefit of my very curious and, for the most part, medically-minded family.  While my mom was here she found these information sheets on the surgeries they will perform to "fix" Christopher's heart, and she thought they were interesting, so I thought I would share them.  They are kind of hard to see, so if you're really curious there is a great animation of everything here.The top picture on this one shows a typical hypoplastic left heart. The doctor drew on it as he was showing me how everything works.  Notice that the left ventricle is not formed, and the aorta is very small. The next picture shows what they did during the first procedure.  They open up the pulmonary artery and the aorta and connect them in order to make a bigger aorta, then they put in a shunt to get blood from the right ventricle to the pulmonary artery in order for the lungs to get some oxygenated blood.  When the procedure was first done, the BT shunt (colored in red on the bottom picture) was the standard.  The other option nowadays is the Sano, which is the black tube drawn in by the doctor.  That is the one that they did on Christopher because the doctors at Primary Children's believe that kids who get a Sano shunt "just do better."  Our cardiologist told us that it's a little scary because it cuts into their only good ventricle, but that the kids who have this type of shunt typically survive illnesses better than those with the BT shunt.  I was glad that we didn't have to make the decision!  The other thing they do during the first procedure is they "core out" the atrial septum in order to allow the blood to mix freely.  Now there is one big atrium and one ventricle.

 Dr. Kaza, our cardiothoracic surgeon likes to give the extra material that they use for the shunt to the parents so that we can see what is in our baby.  This is it.  It's very soft and flexible, but the rings keep it from collapsing.  I believe they told us that the shunt in Christopher is 5 mm long, but I honestly don't remember.  He will have this shunt until the second surgery is done in about 3 or 4 months, and will be on aspirin during that time to prevent the shunt from clotting.  (By the way--my hands look awful because I have to wash them so much now!)

Here is the information on Stages II and III.  We have been told to be prepared for Christopher to have some nasty headaches after the second stage because the blood from the brain goes directly to the lungs, and when he cries and it backs up into the brain, it hurts!  Those babies come out of surgery basically sitting up so that gravity can help with this.  Stage III is not technically "open heart," and I think there is actually a catheter procedure being developed to do it, but I'm not sure of that.  I guess we'll find out in a few years!
 Here are his battle wounds.  All of the holes in his stomach are from the chest tubes and drains.  The patch on his neck is where they had an internal jugular IV, and the gauze next to his belly button is where the PD catheter (a drain in his abdomen) was.

When Matt and I went in on Tuesday night we saw this list on the board and we were amazed.  Christopher was getting better pretty slowly, so to see so much get done it one day was fantastic.  Now I will translate it for you.  They gave him more blood, started a new peripheral IV, discontinued his heparin, pulled out the drain in his stomach, pulled out the line that was in his heart, pulled out the internal jugular IV, pulled out the arterial line in his right wrist, got him off of the milrinone (that was helping his heart when he was so swollen and they were trying to get more fluids off of him), and did a complete echocardiogram to make sure everything was working how it should be.  The completion of this list means he is ready to get out of the cardiac ICU!
This is what his IV tree looked like on Tuesday night.  Compare it with the one in the pictures right after his surgery to see the huge difference.  And the pump that's sideways is my milk, so that doesn't even count!  When I went to see him yesterday he was only on lipids, so there were even fewer pumps.  It's so fun to see him get better so quickly!
Being extubated and free of any drains meant I got to hold him again.  It was SOOOO nice!  I don't know if I'm ever going to get anything done when he comes home, because I don't know if I will be able to put him down.  I know he looks a little blue in this picture, but that's just because of the lighting.  His color really is pretty good.  Just another FYI for the curious, after the first surgery the oxygen saturation is supposed to be between 75 and 85%, so the babies typically are a little bit pale or blue and it's normal.

Saturday, November 12, 2011

My Boy!

I guess I'll start from the beginning.  I went into the hospital at 7:30 on Sunday morning, the 30th of October to be induced.  After a long day, Christopher was finally born at 9:51 that night.  I only had to push twice!  He cried right away, so I thought they might hand him to me for a minute, but they passed him right through the window to the NICU.  Luckily, the NICU nurse took our camera so that we could get some pictures of him.

This is what he looked like after being washed up and transferred to Primary Children's Hospital. They started him on Prostaglandin right away to keep his ductus arteriosis open.  What we didn't know was that it tends to make babies a little grumpy.  He was fussy for the 4 days he was on that, but I got to hold him and sing to him and he seemed to really like that. 

We were able to bring the girls in before his surgery so that they could meet their new brother.  They loved him immediately, but they really wanted him to come home.

For those who may not know, Christopher was born with Hypoplastic Left Heart Syndrome.  In order to survive, he had to have an operation called the Norwood Procedure performed. On Thursday, November 3rd, Matt and I got up at 5:00 and went to the hospital to hold him one last time before his surgery.  We walked with him while they wheeled his little bed into the operating room, and when we got to the yellow line they asked us to give him a kiss and head to the waiting room.   We sat there for about 7 hours, getting updates every hour or two.  I can't describe in words how it feels to be told that your newborn baby is on a heart bypass machine.  It was the longest day of my life.  This is what he looked like when we finally got to see him again.  He had 3 chest tubes, a drain from his abdomen, several different IV lines, pacer wires, oxygen monitors, a catheter, and, of course, he was intubated.


 Here you can see his medication pumps on the left, the ventilator on the right, and the chest tube drains on the bottom. So much stuff for one little baby!  We got a call early Sunday morning asking for permission to close his chest, as it was left open to allow some room for swelling. One would think that giving permission to open your child's chest would automatically give permission to have it closed, but apparently it doesn't!  A few hours later we got a call saying that they closed him, but that his little heart just couldn't pump well enough, so they had to re-open him.  That was a huge disappointment.  We waited another 3 days while they gave him Lasix to try to get most of the swelling down and they successfully closed him on Wednesday.

Here he is right after they closed him.  They took advantage of the extra sedated state to insert a
nasojejunal tube so that they could begin feedings the next day.  So far he has tolerated the food very well and really seems to be on the mend after a pretty rough start.

Today they removed the chest tubes and decreased the ventilator a little bit more.  We're hoping he will be extubated in the next couple of days so that we can hold him again.  In the meantime, we are enjoying the fact that he isn't so sedated so he can look at us.  He smiled for us today, and I took a video of him looking at us, but once again Blogger isn't letting me put videos up. 

Halloween 2011

Since I had a baby the night before Halloween, I had to miss out on the festivities.  Luckily, I had the girls' costumes all ready to go and my mom and husband stepped in to make it a fun night for the girls.  They filled their buckets to overflowing and had a great time.  Here is Wonder Woman and the pumpkin.
We were able to carve pumpkins the night before I went in to be induced.  Shannon did her own, and Leah helped me with hers. 
 The PICU got costumes for all of the kids, and this was Christopher's.  They just set it on top of him since it was too big, but it was still pretty cute!