Tuesday, May 21, 2013

Welcome Home Daddy!

For those of you who don't know, Chris finally made it back home!  We were at the airport at 4am the day he arrived and Lorelai was very excited.  She started crying when I woke her up, but once I told her we were going to get Daddy she instantly perked up and reminded me multiple times not to forget her "Welcome Home Daddy" sign.  She started getting tired while we were waiting, and had just started crying when Chris walked up behind her.  When she turned around and saw him she just held up her arms for him to pick her up, gave him her sign and hugged him tight.  There was such relief knowing he was finally home.  Gavin, on the other hand, slept through the whole thing.

The first time Chris helped me changed Gavin's ostomy bag after getting home, he was pretty shocked at how much intestines live outside of Gavin's body now.  But he's back in the swing of things now and has even done two bag changes on his own. 

As I was catching Chris up on things, I told him how people have been bringing us meals several times a week.  He couldn't believe how many people who have never met us before have just stepped up to help our family when we really needed it.  I filled him in on folks who have come to help with Gavin and Lorelai during the week or for bag changes, and made him sit down while I showed him the life altering gift given to us by Veterans United Home Loans here in Virginia Beach.  We were given a year's supply of diapers, maid service, a date night on the Spirit of Norfolk, some toys for Lorelai and a full day at the spa for me!  To just have someone walk into our home and change our lives like that left me shocked and speechless.  Even now I don't know what to say.  The generosity and kindness of people continues to inspire me and give me strength.  I cannot wait to pay this forward.  Everyone should get to experience that moment at some point in their lives and I would love to be a part of that moment for someone else.  It is indescribably beautiful. 

As soon as Chris started getting used to the ostomy bag, he was able to experience a trip to the ER with both kids.  I think he was somewhat stressed out with having Lorelai and Gavin there, the crying, the questions, the doctors, the tests...I thought it was the easiest trip I've had there so far, because he was with me.  But, of course, it's always stressful.

Gavin had just had a great checkup with his pediatrician.  He was looking better than ever, he was closing in on 13 lbs, had a successful first physical therapy appointment and we were relaxing about finally getting a break.  And that night things started to change some.  Gavin started coughing, he was breathing harder and faster, he was throwing up every feed before eventually refusing to eat, and his intestines became extremely swollen.  I called the surgeon on call and he recommended bringing Gavin into the ER.

Once we arrived, Gavin was tested for RSV, sepsis, and had xrays of his chest and abdomen.  His heart looked enlarged and he had signs of a respiratory infection, but his abdomen seemed to be ok and there were no signs of sepsis or intestinal infection.  There didn't seem to be any answer as to why his intestines were swelling.  While in the hospital, Gavin's oxygen levels dropped to 72 which required him to go on oxygen through the night.  It was scary, but such a different, more calming world having Chris with me when all of this happened.  We never had an answer or treatment options from the hospital, so we left with Gavin the next day once his oxygen levels stabilized.

We heard from our cardiologist the following day.  He felt that this ER visit and these symptoms were related to Gavin's heart, and just increases the urgency with which we need to get Gavin into the cath lab for a stent in his left pulmonary artery.  Due to the severity of the stenosis there, his blood is shunting and mixing which is causing a buildup of pressure, oxygen and blood in his chest which is finding an outlet through his intestines.  In addition, Gavin now has an abdominal hernia which is putting additional pressure on his intestines.  The general surgeon wants to take Gavin into another surgery for an ostomy revision.  Basically, he would put Gavin's intestines back in his body, fix his hernia and then make the ostomy opening smaller so that his intestines will stay put in his body.  This would be an additional surgery that was unexpected, but would help us get to the 20lb goal mark Gavin needs to be at before going to have his ostomy closed.  But, general surgery can't do anything until Gavin's heart is fixed.

So next week we will go to Duke for our cath lab consult, be in the cath lab a week or two later, and then once recovered, meet with surgery to find out when Gavin will go back into the OR.  If his stent placement goes according to plan and provides the relief needed, Gavin should go into surgery sometime around the end of June or beginning of July.  Then, between 12-18 months of age, he will go back into surgery to have his ostomy closed.  It's crazy to think we're coming up on our second cath lab procedure and fourth operation with Gavin being seven months old.  But he is a fighter, and certainly bigger and stronger than he has been prior to any other operations.

I am just so thankful that with these new complications, Chris is here with us.  It certainly is an answer to many, many prayers.  Our family has truly been blessed by Gavin, this journey we're on and the support and love we've received from so many of you.  Life if scary, uncertain and fragile at times.  But it is also precious, healing and resilient.  We have to hang on to our faith and keep hope during the dark times.  And we can do that because we've lived through miracles, we know our guardian angels are watching over us and we've seen the beauty hidden in the dark times.  We've seen those who have joined our journey and helped us when we fell down.  We've seen Gavin grow and heal and smile and laugh.  He is such a powerful little boy who has profoundly changed our lives for the better. 

Wednesday, May 1, 2013

Six Months Strong!

Gavin is officially six months old and going strong!  I am in awe that I am sitting here writing this, thinking of the fear and uncertainty that filled our lives six short months ago.  We are more blessed than any family should be.

Gavin just weighed in at a whopping 11 lbs 6 oz.  He's in the fifth percentile for height and weight, but he is steadily gaining and holding to that fifth percentile line.  So while he is still quite a tiny warrior, the size of his fighting spirit is massive.  Three operations, a heart catherization, and two ER visits down and he is doing amazingly well!

His size and developmental milestones put him at about a three to four month old age range.  He spent his first three months in the hospital having operations, so I see this as God's way of giving those three months back to me to spend with my baby boy.  The times that I couldn't hold him when I wanted, or the days he remained unconscious...God has been so gracious to give me that time back with my son.

For DS babies, six months is a pretty big milestone.  It starts a whole slew of other appointments and preventative care measures that track his health and progress, so that we may intervene as soon as possible for any other challenges that pop up.  For the month of May alone we will:
     *Return to audiology for another hearing test
     *Go to opthamology for an initial eye exam
     *Draw blood work to check thyroid levels
     *Repeat newborn screen blood work (It came back abnormal for certain cell counts at Duke, but Gavin has had so many blood transfusions, that we have had to wait until he is back to all of his own blood before a repeat test can be drawn)
     *Blood draw to determine if Gavin is anemic, or if there is some other reason why his color is dusky
     *Cardiology for the start of his once every three month echocardiograms (down from once a month!)
     *Physical and Occupational Therapy once a week (There has been a freeze on services for folks on the wait list, but that freeze lifted and we were pushed to the top of the wait list due to the severity of Gavin's needs for therapy.  I am SO excited to get started and see what my little man can do!)
     *General surgery just to check in with Gavin's ostomy and prolapse
     *Pediatrician for a weight and vitals check just because she likes to check in on Gavin every three weeks :)

Whew!  Looks like all of my vacation time from work will be in doctor's offices just for the month of May!  But I don't really mind.  It is more time during my day that I get to spend with my baby boy.  Sure, it's not the most ideal of settings, but I still get that time that I would normally not have while at work.  And, by the end of the month, we will have an even clearer picture of his health status and hopefully check some things off until he hits his one year mark.

But, as many of you already know, May won't be SO overwhelming with appointments and therapies.....because help will soon be flying back over the Atlantic!  For every one of you who helped us by writing letters to our Congressman, we thank you!  His office was able to move mountains that wouldn't budge before that inquiry was filed.  You took a few minutes to write a letter on our behalf, and in doing so, you helped bring attention to our case which resulted in a hardship transfer being granted!  I apologize for all of the exclamation marks, but there is so much excitement, anticipation, hope and RELIEF that my other half will be home soon.  Everytime Lorelai hears a plane, she asks if it's Daddy coming home.  I can't wait to tell her when it really is!

So wow, this past six months has been one heck of a journey full of some pretty hard and challenging times for our family.  But we survived it as a family.  Watching our child struggle and fight for his life from the day he came into this world is something that has forever changed us.  Watching him win that fight and become a medical miracle has forever changed us as well.  We have been fighting uphill battles for many months now.  But, it seems as if we are just reaching the peak of the mountain and taking in the breathtaking view of God's beautiful world.  Our son is STILL HERE and is growing stronger each and every day.  Our family will be together again soon.  Our guardian angels are surrounding us in full force.  And peace fills our home and our hearts.

We are certainly aware that we have more battles and surgeries to fight with Gavin.....but, for now, can I get an amen to the off-season!