Friday, October 26, 2012

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.  :)


  1. That is the most beautiful thing I have ever read! God bless u both. Shaun Kirby

  2. Many prayers being sent to all of you from all of us in Nebraska!

  3. I remember all of this and it makes me cry to read it! You guys are doing great! We are feeling so blessed now that Max has DS; we wouldn't have it any other way. We know God picks strong parents for his strongest children!


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