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.  :)

Sunday, October 21, 2012

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. 

Friday, October 5, 2012

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!