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.

One Surgery Down

We are blessed to have so many wonderful people following our story and sending up prayers for us.  I apologize for the delay in updates, but it has been a long week.  Gavin's stomach surgery went well.  We were up at 0430 on his surgery day to spend time with him and hold him before surgery which was scheduled first thing in the morning.  Right before they took him back, we were put on hold because the doctors wanted to take an extra precaution and ensure that a peds cardiac anesthesiologist was available to be in the OR for the entirety of Gavin's surgery.  It made for a long day of waiting, but Chris and I took advantage of the time and spent all morning and afternoon holding Gavin!  And we were very grateful for the precautions taken to make sure that our little guy was well taken care of.

The surgeon repaired Gavin's stenosis so that food can now pass seamlessly from his stomach to his intestines.  There was some minor malrotation of his intestines so that was fixed as well, and his appendix removed.  He maintained a great heart rate through surgery and although the surgery took longer than expected, the surgeon is confident that everything went well and is looking as it should.  We knew he may come back on a respirator, but actually seeing it in him and his little incision was heart breaking.  You always want to be able to protect your kids from pain, but we're helpless as far as that goes right now.  We are fortunate that he is in such caring, capable hands and that he is receiving the superb level of care provided by Duke.

We received a call around 4:30 the next morning from the doctor saying that Gavin had taken a turn during the night and that his blood pressure had dropped, they weren't able to take the respirator out as planned and they were starting him on two different blood pressure medications.  They also told us that they were ordering an ultrasound of his stomach, head and an echo of his heart to see if anything there was causing his blood pressure to drop.  All of those tests came back either normal or as expected, so the doctor felt confident that Gavin's blood pressure dropped due to loss of fluids so they started him on fluids to help balance everything out.  Once the fluids were in, they began giving him steroids and weaning him off of the blood pressure medications.  As they weaned him off, Gavin was able to hold his own.  Around 3 this morning, he was completely off the medications, he passed his oxygen test at 6 this morning, which means sometime this afternoon he should come off of the respirator.  Those prayers are certainly working so please keep them coming!

Gavin was also losing platelets prior to surgery, so they gave him some and we were watching closely to see if his levels dropped again which may indicate another problem.  However, so far he's holding his own there too.  He lost more blood than they anticipated during surgery, but another positive, he had more than he needed prior to surgery so they didn't have to give him any more blood!  Even though he lost some, the fact that he had more than he needed before surgery means he just balanced out!  He is on some pain medication now, but his doctor said yesterday that he is absolutely amazed at how little pain medication Gavin has required and that he sure is tough!  (Well we already knew that :)....but it was nice to hear it from the doctor too).

The rest of this week will be all about rest and recovery for Gavin.  If all goes well, he will have a contrast study next week to make sure there are no leaks from the surgery, and then we can slowly start introducing him to milk.  That is so exciting!  Gavin has had his own nurse since he came out of surgery and the one on one attention has again, made us so comfortable and confident in the care the doctors and nurses are providing him.  Thank you all again for your prayers and kind words.  They are certainly giving us strength and encouragement....and we can see the results of your prayers every single day.

Chris and I were reflecting on our journey some last night.  We talked about how devastated we were when we got the first hint that Gavin may have down syndrome.  Then how much our heart brokes to hear about his heart defect and his stomach issues.  How after meeting with a doctor in Virginia that we sat on our couch talking about whether or not Gavin would ever make it home.   How we were told we would probably not make it to a full term delivery. And then we talked about where we have been this past week.  Gavin made his entrance when he was full term, is holding his heart rate and oxygen levels at good rates on his own, has made it successfully through his first surgery and just keeps amazing the doctors with how well he is doing and how strong he is.  And while his kareotype hasn't come back yet to confirm his DS, we don't care one bit that he has it.  We are so incredibly blessed to have him in our lives and we have so much love pouring out of our hearts and souls for him.  We tell him constantly how many people he has supporting him and praying for him and how many lives he has already affected in a very positive way!  He is a powerful little boy and I am so lucky to be his mom.  :)

Welcome Gavin Walter!

Well, Gavin has finally arrived!  And very much so on his own terms.  We've had quite a few eventful days and I have a lot to update everyone on, so this will be a pretty long blog.  But have no fear my male followers.  I am going to give two versions.  The "male" version that is short and to the point, and the female version which includes every single detail. :)

The short story is that I had a regular doctor's appointment on Friday.  My fluid levels were very low which led to the doctor sending me to the hospital to be induced.  That was around 2pm.  I never made it to induction, because I went into spontaneous labor on the way to the hospital and Gavin was born 5 1/2 hours later at 7:32 pm!  He certainly suprised us all!

And now for the details.  By the time we drove half a mile down the road from the OB clinic to the hospital, I began having contractions.  They were very quickly at 3 to 5 minutes apart.  My dad was with me and we went up to Labor and Delivery where the worst receptionist of all time was on duty.  Well, they wouldn't let me go back immediately because I was there to be induced and apparently there weren't any rooms available at the time.  I stood directly in front of the nurses' desk for nearly two hours with contractions that were two minutes apart and asking for a room about every half an hour.  The receptionist just kept pushing us off.  Finally, a nurse came by and rushed me back to triage around 4:30pm.  I was asking for an epidural and the contractions kept coming closer.  A doctor came in about an hour later.  In the meantime, they left me in the room by myself and my dad in the waiting room.  I was very much so in labor.  At 5:30pm, a doctor came in and checked me, I spoke with the anesthesiologist, and everyone left again for about half an hour.  At 6pm, I WALKED from triage to a labor and delivery room.  I was still waiting on an epidural and asking for one about every ten minutes lol.  (Around that time, my beautiful sister-in-law arrived to be with me through the delivery.  She dropped everything to come be by my side and I will forever be grateful for that. )  Once in the room, it was more waiting before a doctor came in to check me again and FINALLY the anesthesiologist came.  The epidural went in and I just knew relief would be coming within 20 minutes.  Well, as soon as the epidural went in and the nurses helped me lay back on the bed it was time to push.  I'm not even sure the anesthesiologist had time to close the door to the room before I was pushing.  There were about a dozen people who rushed in the room between doctors, nurses and the NICU support team.  There was a concern because they couldn't find Gavin's heartbeat, but it turns out they couldn't find it because he was coming out!  Within about five minutes, Gavin arrived!  Everyone was very shocked that I came in to schedule an induction and went into spontaneous labor which only took 5 1/2 hours from start to finish!  Luckily, the epidural hit a few moments after he was born so I was relaxed after everything was over.

The NICU team gave me thirty minutes to bond with Gavin before they took him.  He is so precious and loving...and perfect!  Medically, everything is as we expected so far.  He had an x-ray, ultrasound and contrast study of his stomach, and his duodenal atresia is actually duodenal stenosis, but the surgery to correct the issue is the same.  There is some concern now that there is a malrotation of his intestines as well, but the doctors can't really tell until they are in surgery.  If there is a malrotation, they will reposition everything and remove his appendix while they are in for surgery.  This does add some complication, but I have confidence in the surgeons.  Surgery is scheduled for Wednesday afternoon, so please send prayers up for our little man on Wednesday!

We should hear more from the cardiologists tomorrow, but Gavin seems to be doing well so far.  He has had two echocardiograms and again, things look as expected.  He doesn't need oxygen right now so that's great news!  He was on oxygen for a while yesterday because his levels and heartrate kept dropping, but today he hasn't needed it.  After several hours of trying yesterday, the team was finally successful on putting in Gavin's central line.  That will be how he gets nutrition until he can start eating on his own, so it was a big deal to get that set up.  The original line that went through his umbilical cord was not functioning properly so that one had to be removed.  But now the line is in, Gavin's heartrate is stable and he's back to not needing oxygen.  He's SO strong!  We still don't know about heart surgery, and we may not know anything for a few more days, but I am so happy with how he's doing right now. 

Chris FINALLY got approved to come home.  I will spare all of the details so that I don't get worked up again, but let's just say his unit is not exactly family friendly and they have impossible standards to meet beyond what the Red Cross requires.  But no need to focus on the negative right now.  Chris is in route to the US now.  He has been stressed too with trying to get home and see Gavin.  I know it's hard being so far away and not being able to see your family during times like this.  But we will be together very soon and I am so excited to have our whole family together again.  I can't wait for him to meet Gavin, and I feel like a kid waiting for Christmas just thinking about Lorelai's face when she sees her Daddy.  That's a lot of emotion for someone who just had a baby and has horomones all over the place as it is! 

The nurses and doctors at Duke have been wonderful.  I love seeing how much Gavin is cared for.  I couldn't ask for anything more.  I would like to thank everyone for your kind words and messages.  It may be a while before I get around to responding, but please know that every single message touches my heart and means so much.  The outpouring of love is a blanket of peace and comfort so thank you all from the bottom of our hearts. 

The Countdown Begins

Well, we've had two more appointments in the past week.  We had an ultrasound and our final fetal echocardigram before Gavin makes his arrival.  It was very difficult to see anything on the ultrasound as Gavin was sound asleep and absolutely refused to roll over or move in any way.  But we did get to see the hair on his head, all of the major organs, and get an update on his stomach and heart.  Not much has changed, which means nothing has gotten worse.  His stomach is a little swollen due to the fluid build up from the duodenal atresia, but PRAISE GOD I have no fluid build up at this time which continues to reduce the changes of going into preterm labor.  I am 36 weeks today.  At one point a few months ago, we never would have believed we would have made it this far.  We are so incredibly thankful and blessed for every additional day he has to grow and develop before making his entrance into this world.

He is measuring a week behind, but that is to be expected being that he is as sick as he is.  We didn't see much change in his heart either, but again, I'd rather hear things are the same rather than hearing something has taken a turn for the worse.  It's still difficult to determine exactly when his open heart surgery will take place without doing an echo directly on him, but right now it still looks like the duodenal atresia surgery will occur first.  We're going to have to wait to see what the echo looks like when he's born, and what his oxygen levels and breathing ability are at birth before we learn any more about when the open heart surgery will take place.

After jumping through many hoops, it looks like Chris will be able to come back on emergency leave to be here for the induction and surgeries.  We had a rough few days where we were told that a Red Cross message was somehow not official enough and before he would be released an email would be required from Duke to emphasize the seriousness of what we are facing.  At some point, all of the appointments, ultrasounds, echocardiograms, meetings with surgeons, intervention plans and NICU visits begin to take their toll and as a parent, I just started to feel beat down by the fact that this was the third time we were being asked to prove that our son will be facing life threatening illnesses/defects at birth at a time when we are trying to focus on the positive and keep hope.  But, our doctor did not hesitate to send the email to help Chris get home and emphasized the importance of what we were facing.  He insisted that we absolutely needed to be together as a family at this time.  And the response was rather immediate....they are letting him come home.  A selfish part of me certainly wishes that he were coming home for good as our challenges will not stop after surgery, but I will be more than grateful for what we are given!  It could always be worse.

We are three weeks out and counting.  We sincerely thank everyone for their thoughts and prayers, and humbly ask that you continue to keep us there.  We are at the very beginning of this difficult journey, but we have an amazing support team cheering for us.  Thank you all for your kindness and we look forward to sharing Gavin's success stories with you!

Updates

I had two appointments at Duke on Friday.  One was a regular OB check and ultrasound, and the second appointment was to meet with one of the doctors from General Surgery to discuss Gavin's stomach surgery.

The OB said that she would expect to see my amniotic fluid level increasing around now, due to Gavin's duodenal atresia and his inability to swallow.  However, my fluid levels were completely normal, and Gavin's stomach wasn't as inflated as they expected it to be.  This may mean that SOME things are passing through from his stomach to his intestines, and instead of a complete separation of the two, his pancreas may be wrapped around the area narrowing the passage way.  The surgery to repair this is the same as if there was a complete separation, but if my fluid levels aren't elevated and his stomach isn't too inflated, it reduces the chances of preterm labor.  So that's good news!

We are blessed to have another fantastic Duke surgeon on our side.  The general surgeon that I met with had prepared a powerpoint presentation just for us and for the challenges that lie ahead for Gavin.  He was extremely thorough and answered every single question I asked.  I even gave him some new questions to throw into powerpoints for others.  :)  The team enviornment is strong and really helps calm your nerves in a stressful situation.  The doctor told us repeatedly that everything he does and when he does it, will depend on what the cardiologist says and how Gavin's heart is looking.  Once Gavin is born, they will take him back for an X-ray of his stomach and a fetal echocardiogram, and within 6-8 hours we should have a plan for when each surgery (stomach and heart) will take place, as well as a better understanding of Gavin's exact health situation. 

Once the duodenal atresia is confirmed by X-ray, Gavin's stomach will be pumped and they will give him an IV for nutrition.  After the surgery, he will continue to be fed by a tube for about a week or two.  Then they will begin slowly introducing milk to him.  While duodenal atresia is a relatively rare condition, the surgeon we met with has performed two of these surgeries within the past month and one was on a 2 lb baby!  Gavin was measuring 3.5 lbs two weeks ago so he should be much bigger by the time he makes his entrance.  The area the surgeons will be operating on is about the size of the tip of a ballpoint pin.  They will surgically connect the stomach and the intestines, and that repair should hold the rest of his life even as his stomach and intestines grow larger.  That is so amazing to me!

I am scheduled to be induced.  The teams are ready to take my little man and get to work on saving his life.  Most days are good for us right now.  We are in the last stretch of waiting, and while Gavin stays inside he is growing stronger and has my body to give him everything he needs.  There are times when I feel overwhelmed with fear and helplessness when I think of the fight and uncertainty he has ahead of him, but knowing that he is in such capable hands at Duke and that everyone seems to truly care about his well being is comforting.  Chris has been gone for about a week now, and we still have no idea if he is going to be granted emergency leave to come home for Gavin's birth and surgeries.  So for now, we would really appreciate prayers that Gavin continues to grow strong and waits to make his grand entrance until his due date, that Chris remains safe and out of harm's way, and that he will be able to come home and be with us during our upcoming hard times.

Renewed Strength

I intended to use this blog to update family and friends on Gavin's status and development.  And while I don't have anything new, medically, to share about Gavin, I am compelled to share a conversation that I just had in the hallway at work.  I was driving back to work from lunch today, and I was just having one of those moments where life seems to overwhelm you and figuring out how you are going to survive what lies ahead just seems impossible.  Then I walked into work, and ran into a lady that I often pass in the halls, but have never really spoken to aside from the polite "Hello, how are you?".  I haven't seen her in a while, so when she saw me today she was surprised to see I was pregnant and proceeded to ask me how far along I was and what I was having.

Then the conversation turned to the struggles Gavin is facing, and she immediately went on to say the following...

She said, "You know what?  Gavin has a purpose on this earth and in this life far greater than you, or any of us realize.  I am a strong believer in God, and I really do feel that when this little guy is born that he is not going to be as bad as they say he is.  I don't find it a coincidence that you were asked THREE times whether or not you wanted to keep him.  He is going to be a warrior in this world, and someone is trying to not let that happen.  The fact that three times you said no, he will not be terminated...the fact that you went to get a second opinion when one doctor led you to believe he would never come home...someone wants to keep Gavin out of this world in a fierce way.  But you, you were chosen to be his mother because you are a warrior too.  Warriors don't come from weak families.  You refused to give up on him and you have fought for him, and I really feel that he is going to come into this world and serve an amazing purpose that we cannot begin to comprehend.  Gavin has already touched so many lives before he has even arrived.  You are carrying a miracle, and you have been chosen to have and raise this miracle.  I am going to certainly pray for you and your family, but I am excited to see what Gavin is about to bring us in this world."

Then I mentioned that I had asked my aunt, who has been through multiple brain surgeries, to be in the delivery room with me.  That she has survived what doctors said that she couldn't, and she is a walking miracle and light in this world.  And this lady at work responded,

"Man, another warrior in your family!  Gavin is going to have a room full of angels over him when he's born and two warriors ready to guide him on his journey.  And I'll pray that Chris makes it in time, but even if he doesn't, Gavin has his blood and with a daddy as a Marine, well that's even more warrior strength for him to fight whatever battles lie ahead of him.  Gavin is going to change this world....he already has before he's even arrived."

I mean, wow!  I was just drudging back into work, having a pity party moment and I walk right into a person that I barely know and end up receiving a message that just blew me away.  I am so inspired right now and I just wanted to share this moment with each of you!

Doctors' Visits: All in a Day's Work

Today, we had a full day of consults and appointments at Duke...we were literally in with doctors from 9 to 5!  But it was a very good day overall.  We started with an ultrasound at Duke Perinatal, and for the most part everything looks the same.  Then we met with the Department Head there, and I must say, it was the best doctor's visit I have ever had.  His bedside manner was wonderful and he really put us at ease.  He gave us permission to Skype with Chris during the delivery, so if for some reason Chris can't get home in time, he can still see Gavin being born. 

Once we finished at Duke Perinatal, we headed over to the children's hospital for another fetal echocardiogram.  The news wasn't as uplifting as our last echo, but the doctor spent over an hour and a half with us discussing the results.  It really felt like specialized, red carpet treatment.  While it is difficult to determine the exact extent of Gavin's heart problems at this point, it seems that he isn't going to be able to wait until the 4-6 month window for surgery.  Most likely, he will either have a shunt put in or have full open heart surgery before he ever leaves the hospital.  The duodenal atresia surgery will still take place within his first 24-48 hours of life, and then once he's stabilized from that the doctors will decide on what type of heart surgery to do.  If Gavin only has a shunt placed in his heart initially, then he will have to return within 1-3 months to have the full repair. 

After our fetal echo, we had the opportunity to sit down and discuss Gavin's heart condition with a surgeon.  Chris said he felt like he went to medical school today!  We learned a lot about the different procedures and complications of Gavin's heart surgery.  To say it's difficult to have these discussions in regards to your child is an understatement.  But it certainly helps to have such a caring, knowledgeable and professional team involved from the very beginning.  It was hard to hear them talk about stopping Gavin's heart for surgery and risks involved with putting him on a heart and lung machine.  Medically (and practically), I understand stopping a heart for open heart surgery.  I get it.  But as a mother, it's terrifying.

We also took a tour of the labor and delivery ward and the pediatric ICU.  Seeing newborn babies with tons of tubes coming out of their tiny little bodies, and knowing that's what my son is going to go through, was another terrifying moment of the day.  But again, the preparation we are receiving prior to going through all of this is truly a blessing. 

All of the doctors and nurses we have met with have also been very vocal about sending any amount of letters, emails, faxes, Red Cross messages or making any amount of phone calls to make sure Chris can be back for the delivery.  They mentioned working with multiple deployed military members and adamantly fighting chain of commands to do what they can to ensure Dads can come back for these high risk situations.  While nothing is a guarantee, it sure helps to have that support behind us.

I have 10 weeks before my due date, so the goal is to keep my little guy in there as long as possible!  However, next week we will have our delivery date.  They will induce labor due to the high risk nature of the pregnancy to ensure that we have a whole team on stand by to take care of our little warrior when he's born.  So prayers would be greatly appreciated that Gavin stays put until our induction date, and that Chris will be allowed to return in time to be here for the delivery.

Gavin still has a very steep, uphill battle ahead of him, but I know he has a canvas of prayers over him larger than Chris and I probably even realize.  We are in the best care at Duke and we are confidant that they will get our son home to us. 

Life Happens

Tomorrow, we have our first consultation at Duke with the Maternal Fetal Medicine office there.  We don't expect to learn anything new tomorrow, but we are looking forward to the transfer of care there and to begin meeting the team of doctors that will be watching out for our little Gavin.  We will return to Duke at the end of August to meet with Gavin's team of surgeons, so by the end of the month we should have a better, more in depth picture of what our little guy will be facing when he's born.

In addition to continued prayers for our little guy, Mom and Dad could use a few prayers too.  Two weeks ago, I woke up not really feeling right.  I felt a little off all day and mentioned it at a doctor's appointment I had that day, but it didn't seem to be cause for concern at the time.  I called Chris that afternoon at work and told him I needed him to come home.  According to him, by the time he got home, I was laying on the couch and while I was breathing and had a pulse, I was unresponsive for 20-30 minutes.  Chris called an ambulance and I was taken to the hospital.  Luckily, Lorelai was at daycare when this happened and her incredibly sweet babysitter kept her while Chris went with me to the hospital.  I woke up in the ambulance, and spent a couple of hours in the emergency room before I was released.  The baby seemed fine, my blood tests came back normal, but since then we haven't been able to get any answers as to what could have caused the episode.  But we really need prayers that this doesn't happen again....especially since Chris got an official answer yesterday that he will be leaving within a month for a one year deployment.

We are hoping that at the very least, they will delay his deployment date some, so that he will be able to be here for Gavin's birth and his first surgery which will most likely take place within his first 24 hours of life.  Because of the duodenal atresia, we are at risk for preterm labor so if Gavin comes too early, then things are complicated by his lung development and other premature factors that may affect his strength to face surgery.  Most likely, if Chris can't get his deployment date pushed back, he won't make it for the first surgery.  He can request emergency leave for Gavin's open heart surgery, but that's the best we can hope for at this point. 

On the bright side, Chris won't be going to a combat zone.  He's done his three combat tours, had his HUMVEE hit by an IED and has his purple heart.  So while we're not exactly thrilled he's deploying during this difficult time, it has been and always could be worse.  We will have the ability to talk and Skype on a fairly regular basis, and when he comes home from deployment he will be on terminal leave and finishing up twelve years in the Marine Corps. 

To say that the year ahead of us is going to be hard is an understatement.  But luckily for us we have a strong relationship and an incredible support system of family and friends.  We'll adapt to the situation we've been handed and make the best of it.  There are certainly people out there that have it worse than we do, and while we feel overwhelmed at times, we know that we are blessed with many positives and we will continue to focus on those to get through the tough times. 

A Spark of Hope

We FINALLY had a doctor's visit that left us with a positive outlook!  We are feeling so incredibly blessed!

Today, we met with a cardiologist at CHKD.  We had another fetal echocardiogram that resulted in 128 images of Gavin's little heart.  And his heart has improved significantly from our last fetal echo which was about a month ago.  The cardiologist told us that Gavin is now on the better end of the spectrum of Tetraology patients.  While his pulmonary artery was very small a few weeks ago and indicated that he would have to go into open heart surgery very soon after birth, that artery has grown today and has pushed back the surgical window to 4-6 months old!  The cardiologist also said that they are seeing good blood flow through that artery and he wouldn't expect Gavin to have the "blue baby" syndrome that characterizes most Tetrology patients.  It looks like, even at this stage, that Gavin's heart should be able to transport a good amount of oxygen to his lungs prior to his surgery.  And even better, that pulmonary artery may continue to grow over the next few weeks leading up to delivery.  So he will still require his open heart surgery, but it will not have to be immediately and his heart seems to be getting stronger!

His duodenal atresia surgery will still have to be within a few days of birth, but the fact that he will not have to endure that surgery within a short time frame of having undergone open heart surgery is such a blessing.  Now we can focus on one surgery at a time and one recovery at a time, and let his little body gain some strength before heart surgery.

The CHKD team has also offered to work hand in hand with Duke once we are set up with our second opinon there, to help ensure that both hospitals will be ready to deliver and care for Gavin no matter where Chris and I happen to be when labor starts.  After last week's appointment, Chris and I were discussing the fact that it didn't seem that Gavin would come home with us...ever.  We have been in a very dark and difficult place over the past week, and I swear I physically felt my soul break.

We went into today's appointment with that same darkness looming over us and our son's future, but today we saw a spark of hope in that darkness and it has absolutely renewed us.  We are still looking at some very serious health concerns and complications for Gavin, but we really needed that small glimpse of hope.  Our son DOES have a chance of coming home, and I can't wait to meet him and hold him and kiss him.  I don't care if his stomach has imperfections, if his heart has imperfections or if he has an extra chromosome.  I love this little angel so much already and I know he will be showered with love from all of his family and friends.

My aunt sent me a card a few weeks ago where she looked up the meaning of Gavin's name.  She said that Gavin means "white hawk of battle" and Walter means "ruler of an army" and that he sure sounded like a fighter!  My little man is fighting right now and I am so excited about that.  God has certainly been good to us.

General Surgeon Visit

Today, Chris and I met with a general surgeon from CHKD to discuss Gavin's gastrointestinal problems.  Gavin has duodenal atresia, which basically means he has a gap in his stomach that prevents food from getting to his intestines and being absorbed by his body.  Within a few days of being born, under ideal conditions, he would be taken into surgery to have sections of his stomach sewn together.  Until this procedure is completed, he is unable to eat so all nutrition will be provided to him through a central line.  It usually takes an additional 3-4 weeks before he is able to eat on his own, but this timeline is expected to be longer for Gavin as children with Down Syndrome seem to recover more slowly from this surgery.

The fact that Gavin also has Tetrology of Fallot complicates the procedure, because the doctors can't operate on his stomach until his heart is stable.  While the stomach issue needs to be dealt with in a matter of days because it prevents him from eating, that timeline will be pushed back until his heart is stabilized. 

The surgeon said that the combination of these two conditions and these two surgeries are very high risk in a newborn, and that out of high risk situations such as these in the operating room, that Caucasian males have the lowest survival rate.  We meet with the cardiologist next week, and he should be able to give us a more comprehensive picture of expectations at that time. 

But as of today, our reality is that Gavin will be a medical miracle to survive these surgeries.

The Beginning

I have decided to start a blog for our son, Gavin, in an effort to document the successes and challenges of his life for our family, friends and those who may not know us personally, but support and pray for our journey.

BACKGROUND
Chris and I have an 18 month old daughter named Lorelai.  She is a vibrant, strong-willed, enchanting baby girl who has brought an indescrible love and joy into our lives.  We are expecting our second child, Gavin in early November of this year, which will give us two babies in two calendar years!

At around sixteen weeks pregnant with Gavin, my quad screen came back positive for down syndrome.  Based on my results, I was given a 1 in 54 chance that our baby would be affected by the disorder.  We followed up  (at 20 weeks) with an ultrasound at Maternal Fetal Medicine in Virginia Beach, only to discover more markers indicative of down syndrome.  That same day, I took a blood test, called MaterniT21, which looks at the baby's DNA in my blood stream to determine if there are any additional chromosomes.  That test came back positive and has a 99.4% accuracy rate in determining Trisomy 21, which is the most common form of Down Syndrome.

Our ultrasound at Maternal Fetal Medicine also indicated a congenital heart defect.  At 22 weeks pregnant, we met with a fetal echocardiologist.  At this appointment, Gavin was diagnosed with Tetralogy of Fallot (TOF) which is a heart disease affecting four segments of his heart.  TOF is treated with open heart surgery, and often can wait several months, sometimes years, before operating.  However, Gavin's particular echocardiogram determined that open heart surgery is going to have to occur immediately after birth.  There is a critical concern with his heart's ability to pump any oxygen rich blood to his lungs.  His particular defect in this area of TOF is severe enough to require immediate open heart surgery.

During this same echocardiogram, we were told that Gavin has a narrowing in his intestines that will prevent any food/milk from leaving his body.  This will also require fairly immediate surgery, but the gastrointestinal surgery will have to wait until his heart surgery is completed and he is stable.  Until this second surgery is complete, he can only receive nutrition through an IV.  Our more immediate concern is that this condition may cause fluid to build up in the uterus and force us into labor prematurely.  Complications from a premature delivery will only make all of these obstacles more formidable for our little guy.

All of these factors together make us a high risk pregnancy.  We will be delivering at Sentara Norfolk so that the pediatric surgeons at CHKD can take Gavin immediately and work their miracles on saving his life.  This has been a terrifying, emotional and overwhelming time for our family.  Down Syndrome alone is a medical justification for termination of pregnancy.  The heart and intestinal conditions are each justifications for termination in their own right.  The combination of all three means that we are constantly met with phrases like, "If you choose to proceed with this pregnancy", "If you choose to have the baby", or "You will need to determine whether or not this is something you would like to continue with."  I strongly feel that this decision is any woman's, or couple's, right based on their own experience and beliefs.  But for us, we have seen Gavin all over the ultrasound.  And I can feel him kick and move all the time.  Chris and I have to fight for our son and ensure that we do everything in our power to give him the best life possible.  No matter what challenges he may be born with or encounter, we will not give up on him.  We will be there every step of the way and do everything we can to surround our son with unconditional love and support.  He may not be a "perfectly" healthy baby, but he is ours and he will be perfect in his imperfections.  I can't wait to meet him and hold him, no matter how long that takes.