Saturday, November 17, 2012

Still Recovering

Gavin has been out of the ICU for four days now!  We are still in the hospital in a step down room, but I am able to stay in the room with him now and hold him whenever I want!  He seems to be doing well, but we still have an unknown amount of days ahead of us in the hospital.  He is still having some problems with his oxygen levels, but the cardiologists expect that as his heart is still healing from surgery.  It looks like he will be coming home on a feeding tube, so the nurses will train me on how to put the feeding tube in while Gavin works up to being able to take a bottle and feed by mouth.

Chris is safely back overseas and I'm keeping him updated through emails, but it still doesn't compare to actually being here to go through it all.  We're hanging in there though.

That's really all the updates we have for now.  We're just taking it one day at a time and waiting for Gavin to be able to eat normally and maintain healthy oxygen levels on his own.  He will most likely leave the hospital with the feeding tube and on oxygen.  I'm crossing my fingers that we can get home before Thanksgiving!

Sunday, November 11, 2012

A Healing Heart

Gavin has been doing much better through his recovery after open heart surgery than he did after his stomach surgery.  I guess he figured everything out after surgery number one!  He came out of surgery on a respirator, with a chest tube, and a pacemaker.  At this point, he is off of the respirator and the chest tube has come out.  The first night after surgery, his body reacted to a low fluid volume so his pacemaker kicked on.  Yesterday, his right lung collapsed and as his body worked to breathe and he had several breathing treatments, his heartbeat increased rapidly and kicked his pacemaker on again.  But for the most part, the pacemaker isn't on and he is doing most of the work.  After breathing treatments and chest therapy, his lung seems to be reinflating and all of his stats look good again.

He is completely off of any sedation medication or painkillers and today the team will begin dialing back on some of his heart medications.  He is still pretty swollen from surgery, but wide awake and holding our hands!  He still has a line in his stomach and an arterial line.  He has to get each of those out and his pacemaker wires out before he can move out of the ICU and to a step down unit.  It is still a long and slow process to recovery, but Gavin is fighting hard and proving folks wrong.

With all of the lines he has in his body, and how soon out he is from open heart surgery, he is not really not stable enough to be held.  But a few nights ago, the nurses on duty wanted to make sure that Chris was able to hold Gavin at least one more time before he deployed.  Within minutes, two nurses and a respiratory therapist were in the room to help move Gavin (and all of his equipment) into Chris's arms.  It was so sweet and kind of them to think of doing that for Chris and for making it happen so quickly.  They weren't sure if the other shifts would let him before he left, so they guaranteed that he would hold Gavin that night.  I was a little jealous :) , but they did let me help with Gavin's bath that night so that made me feel better.

There are still moments where we have our breakdowns, but Gavin gives us strength when we need it most.  It is heartbreaking to look at his scarred body and think of how hard his first three weeks on this earth have been.  But at the same time, he has fought against all odds and is proving to be victorious.  He is certainly battered, but he is far from broken.

Tuesday, November 6, 2012


Gavin is resting in ICU tonight as he recovers from his surgery today.  Surgery began at 0800 today, and within 10 minutes of surgery beginning, we received a call from the operating room that due to Gavin's anatomy, the shunt was not going to work so the more invasive, full repair of his heart condition was what the surgeon was moving forward with.  Around 1230, we received a call that surgery was complete and that the surgical team would begin the process of taking Gavin off of the heart/lung machine.  An hour later, the call was that the surgeon was operating again.  Around 1530 we finally received the call that surgery was complete and the surgeon was coming to speak with us.

The surgeon said that the surgery was very technical and that he had some difficulty finding and operating on certain aspects of Gavin's heart's anatomy.  But he did manage to accomplish everything that he needed to.  He had to go back into surgery because part of the patch he put in Gavin's heart detached from the artery it was in, so he had to go back in and reattach it.  He told us that Gavin seemed to tolerate the surgery well, but at this point it was all up to Gavin.

About an hour later, we were allowed to go back to ICU and see him.  I cannot put into words what seeing him after surgery felt like.  His little body just looks so beaten and battered.  I lost it for a moment as I looked at him and realized that I had mentally been trying to brace myself for the possibility of him not making it out of surgery.  So while he does look small and helpless in his ICU crib, I am so overwhelmed with joy and relief that he is there.  The nurses said that he looked great after surgery and recommended that Chris and I get some rest and food for the time being.  The first 12 hours after surgery would be pretty uneventful, and usually after that point is when things start to get rocky.  We know Gavin is strong, but it is still terrifying to watch him fight and recover when we can't do anything to help him.

Thank you all again for the overwhelming support you have provided.  The words of encouragement have really lifted us up through these tough weeks.  Chris and I have both read each and every one of your messages and are constantly humbled by the kindness and compassion you have shown our family.  Gavin is overcoming the odds every single day and we absolutely feel the prayers you have lifted for us and for Gavin. 

Monday, November 5, 2012

Preparing for Surgery

Well, as most of you know by now, Gavin's surgery was pushed back from Monday to Tuesday, because his surgeon had to do an emergency heart transplant Sunday night, and he wanted to be well rested before Gavin's surgery.  We are completely fine with that decision!

We are definitely nervous going into this surgery.  Prenatally, the soonest it was anticipated that Gavin may need surgery was 4 weeks old, but once he was born, we were told that he may be able to make it to 4 or 5 months old before having to have anything done to his heart.  Well, because Gavin has had so many tet spells (which means his oxygen saturation levels keep dropping), the surgeon and cardiologists decided that Gavin really couldn't make it any longer without some kind of surgery.

We met with the surgeon Sunday morning.  There are quite a few concerns with Gavin's heart surgery, and we won't even know exactly what kind of surgery will occur until he's on the operating table.  The goal is to put a shunt in his heart and widen his pulmonary valve to improve the flow of the oxygen rich blood from his heart to his lungs.  Some of the concerns going into surgery are the fact that Gavin is only two weeks old, that he just had a major abdominal surgery which he is still recovering from, that he is small and behind the curve on where he should be with his weight, and that he hasn't been on milk/nutrition very long to help him grow and get stronger.  To further complicate things, the anatomy of Gavin's heart is reversed from how it should be.  The shunt should be a fairly straight forward surgery, but the area where the shunt should go is on the opposite side of what it should be in Gavin's heart.  So the shunt will either have to somehow cross over Gavin's heart or they have to figure out another way to re-route the blood flow to Gavin's lungs.  If that process doesn't seem like it is going to work, then the surgeon may decide to go ahead and do a full repair of Gavin's heart.  Again, because of Gavin's small size, it would make for a very difficult surgery from a technical perspective, but also would be significantly more demanding on Gavin.  If the shunt surgery is successful, that will hopefully buy us about four months before he'll have to come back for a full repair, and that gives him time to grow and get stronger before going through the full open heart procedure.

Another big concern is placing Gavin on a heart/lung machine for surgery.  Typically, this wouldn't be required for a shunt surgery, but due to Gavin's reversed heart anatomy, he will have to be on the machine regardless.  The machine is difficult on any baby, but even moreso with Gavin still healing from his stomach surgery and being so young.  His Trisomy 21 adds further complications as well.   Coming off of the heart/lung machine will require the right balance of clotting the blood around the surgical sites, but not to the degree to interfere with the surgery, but also keeping the blood thinned when bringing Gavin off of the machine.  The surgeon told us very directly that IF Gavin makes it through the surgery, that does not guarantee that he will survive the recovery period after surgery.  So the next few days will be very critical.

We've asked about the possibility of pushing back surgery a week or two, but there are risks associated with that as well.  With the amount of Tet spells Gavin is having, there is a possibility that he could crash again and not be able to reach stabilization again.  Plus, he is on some pretty heavy medications for his heart and there are side effects and dangers of leaving him on those for too long given his age and size.  So to quote the surgeon, "neither decision is ideal, both have extreme risks, and surgery is the better of the two options at this point."

Gavin is the first case in the operating room tomorrow, and depending on what the surgeon decides, he will be in surgery any where from 2 to 5 hours.  The ICU doctors have said that Gavin really is a fighter, and they would certainly not say that he has "wimpy white boy syndrome."  The fact that Gavin is so feisty, and that he is going to surgery as stabilized as possible are things that are working in his favor.  Please keep him in your thoughts and prayers throughout tomorrow and the following days that he will be recovering.  We do feel surrounded and comforted by the support and prayers we are receiving and are forever grateful that so many of you are on this journey with us!

Friday, November 2, 2012

Fixing a Broken Heart

Gavin is fifteen days old today.  And we were told today that he will have to go in for open heart surgery in three days.

He has done well with his stomach surgery.  The GI contrast study showed everything is now functioning as it should, and Gavin is doing well with receiving milk through a feeding tube.  However, since surgery, he has really been having a tough time maintaining healthy oxygen saturation levels.  This is directly related to his Tetralogy of Fallot, and the fact that his heart is not able to efficiently pump oxygen to his lungs or the rest of his body.  Ideally, his saturation levels would stay in the 80s or 90s.  Initially, Gavin would drop into the 60s when he was agitated.  Now, the norm for him is more the 50s and 40s, and he is still dropping that low while on 100% oxygen.  A few days ago, Gavin hit the 20s and stayed between the 20s and 30s for more than 15 minutes even with aggressive intervention.  Usually, babies with TOF turn blue when their oxygen levels drop, but Gavin hasn't really turned blue except for when he hit the 20s.  He does, however, become extremely unresponsive.  His heart rate dropped into the 80s, his oxygen levels were in the 20s, he wasn't coming up with an oxygen mask on and a team of doctors and nurses spent more than two hours trying to get him back to stable levels.  Chris and I were allowed to remain in the room the entire time.  We are so grateful for the team at Duke and we have great confidence in the care that they provide.  But that was the single most terrifying moment of my life.  Since that episode, Gavin has been on sedation medication off and on, because when he gets agitated, his vitals drop to critical levels.  He gets agitated every time he is unbundled and every time his diaper is changed.  He just like to be swaddled up and left alone.  He does much better when he's being held though.  He is such a cuddler.

The doctors have also been keeping Gavin on 100% oxygen as well as a medication that is forcing a valve in his heart to stay open until he has surgery.  They tried to put him on a beta blocker today that would slow down his heart rate and allow his heart to fill longer with the oxygen rich blood in an attempt to reduce the amount of times his oxygen levels drop so that he could come off of the sedation medication.  That was started around noon today.  We were told that if that worked well, his heart surgery may be in two weeks, possibly longer if he could be stabilized.  They didn't want to do the surgery any sooner, because he's only one week out from his stomach surgery, he has only been taking milk for two days so he hasn't really had a lot of time to absorb that nutrition, and he's only 5 lbs 7 oz. 

We still aren't sure whether or not Chris has to leave Monday as originally scheduled.  Hopefully, we'll have an answer that he can stay by Sunday. 

We will update as we find out more, but this weekend our focus will be spending time with Gavin and as a family before his surgery so please forgive us if we don't return texts or calls for a few days.  Please continue to lift our little warrior in prayer and thank you all for your love and support.