A Busy Month!

On Wednesday, the 11th, Christopher was not eating anything for me, so after calling some doctors, I took him up to the ER at Primary Childrens, thinking that they were just going to show me how to place an NG tube we would be right back home to celebrate Matt's birthday.  That didn't happen.  As I was placing the tube, the cardiologist came in the room and told me to hold off, because he wanted to run some tests to make sure the eating problems weren't masking a heart problem.  He had an EKG and another echo, and after clearing his heart they decided to admit him to see if they could figure out a way to get him to eat and gain weight. I got him to his room and settled him in, and by that time it was pretty late, so I headed home since I was getting a sore throat.  I had a nice little cold for a few days and the doctor asked me not to hold him, so we just went up after Matt got home from work and he held him for me.  They tried to feed him, but he kept resisting and throwing up, so the NJ tube was the only option.  He was put back on continuous feeds that way, then a speech therapist came to see him and she asked the doctor to do an endoscopy to see if his vocal chords were working, because she was pretty sure he was silently aspirating.  Well, she was right!  The endoscopy showed that his left vocal chord is paralyzed in an open position.  If you recall, when he had his heart surgery he had his aorta repaired because it was too small.  Any time the aortic arch is operated on, the nerve that serves the vocal chords can (and usually does, to some extent) get injured, because the nerve goes up and under the aortic arch.  It usually heals in time, but if it is permanently damaged then the right vocal chord will just take over, and the left vocal chord can be injected with something so that it closes.  This also explains why he has had some difficulty swallowing, because he probably has a loss of sensation on the left side of his throat, and the muscles on that side are also affected.  Add to that his reflux problem, and you have a baby who develops an aversion to eating, because it gets into his lungs!  So, we didn't feed him anything orally for a week to give his lungs a chance to recover.  I had a speech therapist show me how to position him when it was time for him to eat again, and he remembered how to do it just fine.  He started off very slowly, but he's working his way back up very nicely.  After a few days of eating orally again and a positive trend of weight gain, we got to bring him home on Monday.  By that time, the cold had moved through everyone in the family, so that was pretty good timing!  He is off the lasix now, but they added erithromycin to his meds because in low doses it improves motility. (Did you know that?  I didn't know that!)

Here is a view of the mountains I got to pass every day on my drive to the hospital.  We finally got a decent snow storm, and it was beautiful!

Here's a shot of all the equipment we have right now.  It's really not too bad, but he's not easy to just move from room to room.  Don't worry, I hold him a lot.

The sisters couldn't be happier to have their brother (and mom!) home again.  They couldn't wait to hold him and take pictures with him.

 

Doesn't he look so grown up in this picture?  Needless to say, I am head-over-heels in love with this little boy.

Cute Pictures and an Update

I love these girls.  One of their favorite things to do is to don their aprons and help me make dinner.  Since this one was easy, I pretty much let them do all of it.  Shannon is cooking the chicken and peas and Leah (in her Cinderella dress, of course) is stirring the orzo.

I went to check on them the other night and found them like this.  Keep in mind--they have bunk beds.  I hope they stay friends forever.  They sure do like to play together.

This is Leah with her "Nanny."  I should clarify that it's her grandmother, since when I usually say nanny people think we hire someone to take care of her.  Somewhere in that family line they started saying nanny instead of nana, and it has stuck for several generations.  I would also like to point out that Leah is a very snugly little girl, but only when she is getting "tickled."  See how Nanny is tickling her foot?  It's her favorite thing.

As for the Christopher update, this picture sums it all up.  I took him to the ER on December 30th because he was requiring quite a bit of oxygen when he shouldn't have needed any (well, supplemental, that is).  They admitted him and he ended up staying almost a whole week.  They did some echocardiograms and thought maybe his Sano shunt was narrowing, so they thought of doing a cardiac catheter procedure to balloon it and open it back up.  Well, they gave him some blood first and that perked him right up, so they held off on the more invasive procedure.  Then he started not eating very well.  We tried a few different bottles and nipples and eventually he was doing ok, so we brought him back home.

Unfortunately, he did worse and worse at home until last Wednesday (Matt's birthday, no less) I had to take him in again because he just wasn't eating much at all for me.  I expected to learn how to place an NG tube in the ER and be out of there, but the cardiologist wanted to run some more tests to make sure there were no underlying causes.  He was admitted again and is still there and is still not eating.  In addition to that, he has taken to throwing up every day and it losing weight.  So, they replaced the NG tube and tomorrow he will have a swallow study to see if he is aspirating anything.  They may push the tube back down to his intestines so that he doesn't throw up anymore, or they may consider diet changes (dairy intolerance?).  Basically, they really don't know what's going on and they have told us as much, but we are still hopeful that they will get it figured out.  At least he's in a great hospital and is being well cared for!  He is quite a bit more fussy than normal, but it could just be because he has tubes all over again.  The doctor has asked that I not hold him because I have had a cold, so his dad has been holding him and singing to him.  He still smiles for us, as evidenced in this video.  We sure do love this little man!

Christmas!!

Christmas couldn't have been more perfect.  Since we have to be so germaphobic this year, we missed out on the Gingerbread Festival, the Zoo Lights, the Messiah sing along, the lights at Temple Square, and we had to limit the visitors as well, but I can honestly say I didn't really miss any of those things, because we had this:

The real Santa Baby!

We got to see the girls' faces light up when they both got the princess dresses they asked Santa for.  Naturally, they had to put them on immediately.  Shannon is Princess Tiana from "The Princess and the Frog," and Leah is Rapunzel.

Here is Leah dancing with her Rapunzel hair and Shannon playing with Leah's new doll.  Believe it or not, this is after I had cleaned up a bit!

The boy, enjoying his chair and watching all the excitement. We got this outfit from a neighbor and I just love the little red pants!

Christmas morning!  I love how they look just completely overwhelmed.

Another thing that I just didn't get to this year was having the girls do a play.  That is, they didn't memorize anything.  Fortunately, they are always willing to perform, so when I told them that I wanted to see them sing a song together, they were very willing to oblige.  Christopher even sang along!

The kids got "A Charlie Brown Christmas" book, the movie of which I think we've watched 100 times this season. I am not exaggerating when I tell you that Leah sat in this spot for a solid hour and pushed the same button over and over again, singing along each time.  She REALLY likes this book!

Leah is 3!

Sorry, Lori, no pictures of the boy today.  I'm waiting until he doesn't have the NG tube anymore, and that should be in the next day or two.  I haven't fed him anything through it since Sunday, so give me a few more days of good bottle feeding and I will take it out and take some more pictures of him.

It was Leah's 3rd biurthday on December 3rd.  She wanted a Cinderella cake, and since we are simplifying everything around here because we don't sleep much, I just used a plastic princess that we got on a cake a few years ago instead of the Barbie that I usually use.  I did make an ice-cream cake for her, though.  She had a fun party with just us and one friend.  They had macaroni and cheese (by FAR Leah's favorite), ate cake, played dress-ups, and watched a movie.  Happy birthday cute girl!  Here she is blowing out her candles. (Yes, I finally figured out how to post videos again.  For some reason now, I have to "finalize" the video by saving it to my computer from the camera, opening it with Windows Live Movie Maker, and save it in there.  Kind of weird, but it works!)

Being Home

Christopher has been home since the day before Thanksgiving.  I went to the hospital to get him and spent all day there learning how to feed him and give him his meds and everything.   As soon as we got home we had the oxygen delivered, the feeding equipment delivered, and a nurse came and taught me how to use the pump for the feeding tube.  It was a pretty overwhelming day!  He came home on 6 different medications, so for the first few days I was very busy.  I had to refill his food bag every four hours, pump every 3 hours, give him aspirin once a day, lasix and zantac twice a day, propranolol 3 times a day, and I weaned him off of his methadone and ativan over the next four days.  Plus I had to change his diaper and console him whenever he cried.  We aren't supposed to let him cry very much because it wastes calories that he needs very much.  Babies after this surgery burn 150 times more calories than "regular" babies, so in order for him to grow he needs to burn as few as possible with things like crying and shivering.  I also have to mix Progestimil with my breast milk to add more calories that way.

   

He is currently being fed through an NJ tube, which goes right into his intestines.  They start this way in order to slowly introduce food and to make sure they don't aspirate anything because the swallow reflex is still weak.  Christopher's cry was so weak when he left the hospital that they didn't even bother with a swallow study because they are pretty confident that he would have failed.  Apparently the nerve that makes the vocal cords work is the same nerve we use to swallow, and that nerve very commonly becomes inflammed after aortic arch repair.  His cry has slowly gotten stronger (although it's still pretty weak), and he is scheduled for a swallow study on the 12th of December.  A speech therapist has been working with him and she thinks he is doing really well and will be able to pass.  She put a few drops of breast milk on his binkie to get him to salivate and practice swallowing, and you should have seen his smile!  Anyway, if all goes well on Monday the tube will be pulled back to his stomach so that we can start introducing food slowly that way, then eventually it will be removed and he will be able to bottle feed.  I really wish I could just breast feed him, but he needs the added calories of the formula, so I will continue to pump.

The girls have been begging to hold him, so after having them wash their hands really well, we let them hold him for a minute.  They were in heaven.  They just adore their little brother.

 

He had his first follow-up appointment on Wednesday of this week and everything looked great.  They took him off the oxygen (yay for fewer tubes!).  They also had me go down to once a day on the lasix, and I gave him his last propranolol this morning.  The first night off the oxygen his sats got a little low, so I put it back on him, but since then he has been right where he should be on room air.

  Here his is after his sponge bath today in his Christmas outfit that a friend gave us.  Pretty handsome!  (Lori--I squeeze him now.  It doesn't hurt him, I promise.) 

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.

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.