The Next Surgery

Well, it has been quite a while since I've updated everyone on Jacob.  Needless to say, he's done great.  After his last surgery in 2014, we did have to go back in due to fluid around his lungs, but after a week or two in the hospital and a change in diet (to a horrible formula called Enfaport - terrible memories).  He did have a cath a couple of years ago to check out some narrowing and they were able to ballon it and that did the trick.

In the years since, he has grown up into quite the little man.  He started Preschool last year and he's just a sweet little boy.

Hiking at Graveyard Fields (9-23-17)

He and his brother love each other and play all the time.  Jacob loves Paw Patrol (and every other cartoon just about) and monster trucks.

A couple of months ago, we had a scheduled cath to check everything out in anticipation of having the Fontan surgery, which brings us to today.  As I speak he is back in surgery.  The Fontan essentially re-routes the blue blood coming from the lower body directly to the lungs (it is currently going into his heart and mixing with the red blood, which is less efficient).  You have to wait for this surgery as the lungs need to be fully developed and the heart/ body at a large enough size to put a big enough tube in there to last him a long time (so he won't outgrow it).  The surgery does take quite a while -  most of the time involved is cutting through scar tissue though (3 hours they said).

There is a new surgeon here at Levine, Dr. Kirshbom, who replaced Dr. Peeler who did his previous two surgeries.  He is supposed to be an excellent surgeon, which is why we are back here!

We aren't excited to be here by any means, and it was really hard to leave Ethan behind with his Nanna and Pops, but it was also good that they were there to take him to school and take care of him while we are gone!  Of course, Ethan got a fever the night before we left, just to add to all of the excitement...

Our prayers are that everything goes well and he recovers quickly.  The main concern for recovery is fluid around the lungs (remember that?), which is a result in the change of pressures in the lungs from the redirected blood flow.  So we'll be in the hospital until all of that stops.  It could be anywhere from a week to a month +, so we'll pray that he doesn't drain too bad. That is about all of the update for this moment, I will keep you posted as to how everything progresses!

Superman!

Jacob has progressed really well over the last two days.  Today we were able to move up to the progressive care floor from the ICU.  He had his chest tubes removed this morning, he was weaned off of his oxygen all of the way, and he had both of his central lines removed.  He has definitely had some pretty bad headaches the last couple days, but this afternoon was the first time we got to see him back feeling pretty decent.  He talked to us and smiled a bit!

He did develop a clot in his leg where one of the central lines was, but it isn't too big of a deal.  We will have to give him shots for a little while to treat it, but it won't keep us in the hospital.  The clot is in an artery (and it is pretty much fully blocking it) but since it is in an artery, it can't go back to his heart and cause any issues.  His body has also kind of worked its way around it, as his foot is still warm (not quite as warm as the other, but not cold).  They still want to treat it though b/c they will be using his arteries in the future for caths and such.

All in all, he has done really, really well and we are so happy to almost be through this stage!  We are planning on getting out of here Sunday provided a roadblock doesn't jump up and try to stop us!  Apparently, Jacob really wants to be home to watch the Superbowl :).

Thank you for your continued thoughts and prayers!  We'll let you know how it goes!

One more surgery behind us!

Jacob had is Glenn procedure today and is doing well all considered.  He was able to come off of the ventilator in the operating room so he was breathing on his own when we came up to the ICU.  The surgeon, Dr. Peeler, said that everything went well, very straight forward and so now, we are just in healing mode.

Jacob isn't feeling great; the Glenn operation gives babies a headache that is pretty bad the first couple days, then steadily subsides over the next couple weeks.  This is caused by the change in blood flow that the surgery causes and the time it takes for the body to balance out.

Jacob was able to take some pedialyte this afternoon, then around 5 he took about half a bottle of breastmilk.  This seemed to help him calm down a bit.  He is still keeping his eyes closed and is pretty whiny/ grumbly all of the time right now as he sleeps.  Hopefully by tomorrow afternoon, he'll be a happier baby!

Getting Ready for the Glenn

Well, the day we've been waiting for/ dreading/ looking forward to getting over with is nearly here.  I know it has been a while since an update, but Jacob has been busy gaining weight and doing well and keeping us busy (his brother has helped with that too!).

Chunky Monkey

If you can't tell, he has gained some weight!!!  He is up to nearly 14.5 lbs.  We joke that we let him teeth on frozen butter :).

A few weeks ago, Jacob has his routine catheterization to check out his heart.  Everything looked great, actually the Cath Dr said that he had the best heart function for an HLHS baby that he had seen in the last year!  There were no surprises and based on that, we went ahead and scheduled the surgery.  His Glenn procedure will be Wednesday (the 29th).  Tomorrow he has a pre-op visit, just to do blood work and meet with anesthesia, do an X-ray, etc.  We'll be going back to the awesome Ronald McDonald house tomorrow night and will be at the hospital first thing in the morning Wednesday (6 AM!) as Jacob will be the first case.

You may be wondering, why the surgery now if he is doing so well?  Well, basically, there is no benefit to wait any longer to do the surgery.  Jacob may be able to go another month or two before he has to have the surgery, but we might as well and get it over with now while he is healthy and bug free!  We were told to expect about a week in the hospital, so we are keeping our fingers crossed for that or even better if we are lucky!

So, all of that being said, pray for our little Superman!!!

Super Turtle!

We are all rooting for a quick recovery!!!

Supermen!

Merry Christmas

Well, it has indeed been a while since I've sent an update, but that means that Jacob is doing well!  We are just extremely busy with our normal day to day life!  Jacob is still gaining weight well and is nearing 13 lbs.  He is getting more and more active each day and really is coming into his personality.  He likes to talk and smile and coo and just be cute in general.

We are getting closer each day to his second surgery.  On January 9th we have a visit to Charlotte with the Cath Dr.  He will perform a catheterization on Jacob to check out his heart and all associated circulation to see exactly when he is going to need the surgery and if there is anything special they need to repair during the second surgery.  We expect to have surgery the 3rd or 4th week of January at this point, but we will see for sure soon.

Jacob had a Merry Christmas today and slept calmly while we opened his presents for him :).  He is excited to play with the wonderful gifts everyone gave him!

I hope that all of you have had a wonderful Christmas!

Two months Old!

Well, it has been much too long since we've had an update!  Just wanted to share a few updates about Jacob.  Jacob has been growing and gaining weight really well, and continues to bottle feed pretty well.  He is up to almost 10.5 lbs!  A week or so ago he celebrated his 2 month birthday!

Then

Now

It is hard to believe how much he has grown and how far he has come!

Friday he went to the pediatrician for his 2 month shots (4 of them).  Needless to say, Friday night and Saturday weren't a lot of fun, as he was feeling a little crummy.  But he is back to his normal self now and still managed to gain plenty of weight today!  He is on a every 2 week appointment schedule now finally with the cardiologist and every month with the pediatrician.  That makes our lives a bit easier!

We've had a nurse now for several weeks and she has been great.  She does an excellent job taking care of Jacob and will hold him all day if that is what he is in the mood for!  For now we are doing 8 hours a day until the end of the month.  Starting in December, we'll probably go to 4 hours a day so that we can keep the nursing for longer, hopefully till his next surgery.  Our current nurse will be leaving us at the end of the month, so we are hoping for another good one the next time!

Jacob is definitely developing well.  He is much more active during the day now, and coos a lot and definitely moves his arms and legs a lot.  He is a handsome little boy and loves to snuggle!

Thanks again for all the thoughts and prayers, Jacob sends his love!

Getting Bigger

I know it has been a while since I have posted.  My only excuse is that we are ridiculously busy!  It has something to do with having two little boys :).

Jacob is doing great.  We've been going to the cardiologist every week, and he is steadily gaining weight here and there.  He just broke 4 kilograms yesterday for the first time, so he has gained 1.1 pounds since he has come home!  Everything else is also looking great for him as well.

Our Little Boy

Ethan is also really enjoying having a little brother, despite the fact that he doesn't get quite the attention he used to.  He has really taken it all in stride and is doing so well.  It is just crazy to think how much he has grown up through this whole experience.  He loves his little brother a whole lot!

Big Brother

Big Kiss

Buddies

Jacob has been doing great on his feeds (obviously) and sleeping well through the night (except for when we have to wake him every 3 hours to feed him)!  The nurse started this week for 8 hours a day 10-6 PM.  She has been great and is a relief for Angie, especially knowing her mom is headed home next weekend.  Speaking of Angie's mom, she has been a huge help for us and we are really going to miss her!  It is going to be pretty crazy without her here, but we'll manage one way or another.  We are definitely thankful to have the nurse during the week so Angie can get a few things done and entertain Ethan.  Our dog and cat (Cody and Cashmere) came home this week, so we really have a zoo now at home!  We are happy to have everyone together though!

All in all, Jacob is doing great and progressing along.  We have a couple of more weeks of going to the cardiologist each week, then we'll be every other week which will save us a bit of driving!  Sorry again for the lag in updates, but he is doing well and thanks everyone for the thoughts and prayers as always!