A Christmas Miracle

Last week was a little rough for us.  Gavin isn't gaining weight as the doctors would like, so we are focusing on pushing calories and more feedings this week, in an effort to put some baby fat on him.  If this doesn't work, then the next step will be to put him back on the NG tube, and if that doesn't work, then we're back to talking about a surgical feeding tube.  We are also in semi-isolation now as we await for a shot that Gavin needs for his heart to prevent him from getting sick.  It really does feel like one step forward and two steps back.

But I started this blog after receiving much encouragement and advice from other parents who have kids with DS.  They told me that it really helps when times get tough or frustrating, to look back on your journey and realize how far your child and your family have truly come. 

It is easy to get caught up in the obstacles, and forget how far we HAVE already come.  Here are some pictures (finally!)for those of you who haven't been following through facebook.  Thank you all again for your many prayers, and for your part in giving us our Christmas miracle.

 

Healing Times

Our little warrior has been home for two and a half weeks now.  We were discharged the Monday after Thanksgiving and it has been a whirlwind since then!  Gavin did come home on a feeding tube, because he had still never eaten by mouth by the time we were discharged.  But feeding was the only thing keeping us there, so I was trained on how to put his feeding tube in, how to run the pump and give him all of his medications.  When the doctors first started discussing the possibility of having me learn how to put his feeding tube in, I thought to myself that there was no way I would be able to do that.  I have thought that a lot over the past few months, but when the time comes you end up doing what you have to do.  I've put a feeding tube in so many times now I feel like a pro.  I would still rather anyone else do it, but it was left up to me to ensure that Gavin was getting the nutrition he required so we made it work.

About a week after I brought Gavin home, he started taking a bottle.  Finally!  I've had to put the feeding tube back in at times, because he either won't wake up to eat or some days it just seems like taking the bottle is too exhausting for him.  Just the other day, I had to put one back in and Gavin didn't eat by mouth for over 24 hours.  Everything seems like such a big, overwhelming deal with him, because of all that he has been through.  If he sleeps for a long period of time, I'm constantly checking to make sure he's breathing.  If he doesn't seem interested in eating, I start worrying about the calories he may miss and how much he needs to grow and put weight on.  But Chris is always there, even from afar, to calm me down.  He reminds me what all Gavin has gone through and that some days maybe he's just tired and can't do it, so I need to do it for him. 

We've had two cardiologist appointments now and both have said that Gavin looks good.  He's holding his oxygen levels around 97 and 98 which is a huge improvement from where he was prior to surgery.  He will still need another surgery in a few years, because his pulmonary valve is bad, but for now he is recovering well.  Next up we meet with audiology, because Gavin failed his hearing test in his right ear.  It may be due to fluid in the ear or it may be a hearing loss.  We will also meet with an ENT at this time, since it seems like Gavin may have a lazy trachea.  It isn't causing any problems so far, but we want to keep an eye on it.

We also have to meet with an endocrinologist, because Gavin has abnormal thyroid levels.  That is fairly normal in kids with DS.  We have met with our community early intervention program, and our evaluations and early intervention therapies should begin in January.  There was a six month waiting list, but due to the severity of Gavin's problems and his age, we jumped right to the number one slot.  It felt so awesome to finally catch a break!  And our case worker is one of the sweetest people I have ever met.  Definitely a blessing!

Lorelai is doing great with Gavin.  She loves giving him kisses and making sure he's covered up and warm.  I won't say my days are easy, but getting hugs and kisses from Lorelai, hearing her laugh, seeing her love for Gavin and being able to finally hold my son in my home sure does make things bearable.  We are fortunate to Skype with Chris on a regular basis.  Lorelai loves talking to him on the computer.  Being apart is definitely hard, and unfair at times, but we are lucky to have a strong relationship and an amazing family dynamic that will most certainly get us through this next year. 

Plus, we have the most amazing Christmas miracle so it's pretty hard to stay down too long.  I still look at Gavin in awe and amazement at the things he has survived and the life that he breathes every single day.  We have a long road yet to travel, but with Chris, Lorelai and Gavin, I know that the journey will be a beautiful one.

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!

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.

Recovery

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. 

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!

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.