Overdue

An update on Leo is long overdue.  Sorry to any of you who have come here for an update on Leo.  I'm not exactly sure why it has taken me so long.  The easy answer is time.  I don't have any.  The days and nights are filled with taking care of this little guy and our other three.

While time is definitely a real reason the more accurate reason is harder to define.  I'm not exactly sure.  There's so much to say, yet I don't know what to say.  He is doing well.  He had his second surgery called The Glenn on January 15th.  He again came through wonderfully and had a quick recovery without any complications.  We are very, very blessed.

I haven't wanted to do a post about how hard things are because who wants to read that?  Also we know in the big picture Leo has done great!  Sometimes its hard to see the big picture, you know?  We have struggled getting him to eat and gain weight.  And we have certainly struggled to get him to sleep (out of our arms anyway).  He has happy moments, but has been generally miserable.   Our guess is that he probably just doesn't ever feel good.  At almost 6 months old (!!!) he has come leaps and bounds and we are seeing the light.  We are lifted up daily by the angels around us. Our family and friends have been tremendous.

Our eyes have been wide open to a world we never really knew existed.  The world of Heart Babies and Heart Moms and Dads.  We have seen amazing things happen with Leo and with other babies. Miracles.  We have seen warriors (for lack of a better term).  Babies, kids, moms and dads who are fighting hard and long battles.  Some have been fighting since birth.  We have also seen tremendous heartbreak and struggles.   Babies and kids who weren't as lucky as Leo.  Babies who didn't make it.  We went to a funeral of a wonderful and darling boy who fought a hard, hard fight.  He also had HLHS and was born a few weeks before Leo.  They were going to be best of friends and fight the fight together.  Now he's gone.   Why has Leo been so lucky and so many others haven't?

Our goal now is to keep him healthy until cold/RSV season is over. He mostly stays home. Definitely doesn't go to social functions. We have stayed away from parties and family get togethers. Scott and I split up for such gatherings and for church.  We don't have anyone over other than adult family members. The kids hate it, but they can't have friends over just yet. We are looking forward to spring more than ever. 

Socially he is on track I think. But he is a little behind on physical development. Both because he has had two major surgeries. But also because his heart is weak and things are generally going to be harder for him. He has a physical therapist that comes to the house to help him with the milestones. 

It's a hard realization to know that there are a fair amount of babies with HLHS.  Even a decent amount of kids.  Not so many teenagers and as our cardiologist said the other day, "I know of a few in their 20's". It's really hard to put that aside and focus on what we have now.  But what we have is beautiful.  We have a darling boy who we love very very much.  It hurts sometimes.

I think I covered it all. That wasn't so hard after all.

It has been the hardest of times for sure, but at he same time we are walking through a miracle.  Of course we are so glad he is ours and humbled to be trusted with such a spirit. 

The Floor

Leo has made the big move to "The Floor" as they call it. He is now on the third floor in the Childrens Surgical Unit and has left the CICU (Cardiac Intensive Care Unit) meaning he is not a critical heart patient anymore. This is great news and also an adjustment to go from a nurse with him 24 hours a day to a regular room with a nurse who has other patients.

He is not on any oxygen right now and hopefully won't have to come home with any. However he did not pass his swallow study meaning he is not ready to take food by mouth and will keep his feeding tube in for now.

Big news is we should be coming home at the end of the week! This is much sooner than we expected. If he was taking food by mouth we would be here a little longer while he figured that out.  But overall he is doing awesome and definitely fits into the best case scenario for his heart defect and what his poor little body has been through.

I can see home in our future.  I am both thrilled and terrified.

Focus

Leo's little lungs are doing better. They are going to slowly wean him off the high flow oxygen of the CPAP and back onto the regular oxygen. It will take a couple days.

Meanwhile he has been hanging out with me and being cute. He was trying REALLY hard to focus today. His nurse and I couldn't stop laughing. So, for your viewing pleasure...

Forgot the pictures

Macy got to hold him before his CPAP

Scowling over the air being pumped up his nose.

His most comfy position this morning. Slept for hours this way.

Setback

Leo has had a bit of a set back.  He was struggling with his breathing some and his chest X-ray showed he his left lung was collapsed and the top part of his right lung.

They took off his regular oxygen tube for a high flow oxygen.  That didn't work, so they put him on CPAP.  This is an even higher flow of oxygen to try and force his lungs open.   His left lung has improved, but the upper right hasn't.

If if still hasn't improved by the end of the day, they may put him back on the ventilator. This is a last resort. The don't want him on the ventilator any more than absolutely necessary.  The more they are on it, the harder it is to get them off for little babies with Hypoplastic Left Heart.  They start to rely on it because it's easier.

The nurse today is trying to change his position every few hours to see if that helps to open his lungs up and to help loosen the secretions he has in his lungs.

Being on CPAP means he gets to wear this cute little had that keeps his oxygen tubes in place.  Between the hat, the big tubes and his binky I can barely see his face.

He doesn't particularly like his new breathing arrangement. It makes him very grouchy, but he seems to be tolerating it better today and has slept a lot.

They are doing the next X-ray as I type this. Fingers crossed that they see a big I improvement.  I'm choosing to be optimistic that this is only a minor setback and we will be moving right along again soon.

Moving Right Along

Leo is doing very well since the surgery.  The surgeon closed his chest on Thursday.  This is considered surgery, but they don't want him traveling through the hospital with an open chest so they all come to his room, the surgeon, anesthesiologist, and the rest of the surgical team.  It took about an hour and a half.

His little body responded really well to the added pressure which sometimes can cause a lot of problems. This was a major milestone and he has continued to move right along.  He has been able to get quite a few things taken away.  All the drain tubes that drain excess fluid from the surgery are gone.  A lot of the swelling is gone.  A big step was removing his ventilator today so he is breathing on his own.  He just has a little oxygen tube for his nose now.  He also got a feeding tube put in, so he is getting milk for the first time.  They give him tiny amounts verrrrry slowly.  Like 1 teaspoon a day.

He still has little pacer wires coming out of his chest that are hooked to his heart in case it stops, they can hook up a pacemaker.  They should come out in the next day or two and then we can hold him again!!!  Much sooner than we thought.  I can hardly wait!!

His eyes are big and bright again and he looks all around from his little stationary spot. All the nurses and doctors (there are A LOT) come by and say how alert he is and how good he looks.  They can tell me all day!

Speaking of the nurses...it is a full time job to take care of these little babies.  Leo has his own nurse that sits in his room and monitors all the medicines and monitors.  They are amazing and we have had some really great ones that we love!

We definitely know that Leo is being blessed and prayers are being answered! So many things can go very wrong, very fast!  We continue to pray as hard as we can that things continue to go well.

I will try to get some pictures posted next time.   He looks much much better.

Post Op

Leo had his first heart surgery yesterday.  It was an extremely long day.  We got to the hospital at about 6:30 to see him and walk to the operating room with him.  He went in at about 7:30.  We waited in the surgical waiting room where they call to give updates every 1-2 hours.  The surgeon came in and told us how things went at about 1:30.  Then we got to see him about an hour later.

He had what is called The Norwood procedure.  It is the most complex and critical of the 3 surgeries he will have.  They are trying to accomplish 4 things.  It is pretty complicated but in short they are:

1.  Enlarge the aorta
2.  Combine the aorta and the pulmonary artery
3.  Remove the membrane that connects the right and left atriums
4.  Put in a shunt that allows blood to flow to the lungs

Everything went well and the surgeon was happy with the results. The recovery is slow and long.  His chest is still open.  They keep it open for a few days until the swelling goes down.  He has a pad of gauze and a little cover that looks like a corset with a shoelace holding it down until they close it.  The surgeon thinks they will close it either tomorrow or Friday.

The most critical part of his recovery is the first 24-48 hours.  We are halfway through.

This is the morning of surgery.  And the photos after.  Brace Yourself.  It's a lot.

I was prepared to see him like this, but it was still a shock.  I had to find a chair.  Honestly I was just so happy to see him that I was mostly relieved. (After I found a chair.) He has started to wake up some.  He opens his eyes and moves his hands and feet.  It will take him a while and that is how they want it.

Thanks for everyone's nice comments and prayers.  It helps.