Tuesday, November 5, 2013

More Hurdles

Gavin went to see his General Surgeon today for a pre-op visit.  We were expecting to schedule his pull-through procedure which would close his ostomy.  Cardiac anesthesia was on board to take his case in the OR and the PICU was ready to take Gavin in during recovery.

But, we recently received a diagnosis from Duke that said Gavin has severely obstructed sleep apnea.  We knew that translated to more attentive anesthesia care and ICU recovery after surgery, but that's all we were expecting.  Today, the surgeon halted surgery until Gavin has a consult with ENT.

Luckily, our surgeon had already spoke with doctors from the ENT clinic, so we have an appointment first thing in the morning.  If the ENT says Gavin's tonsils or adenoids need to come out, then that has to occur before his general surgery.  This way, his risks under prolonged anesthesia are mitigated.  That is an extra surgery we weren't expecting, and we definitely didn't expect anything to stand in the way of surgery this week.  But, at least the care is comprehensive.  So Gavin may still be in surgery this week, but just not the one we were expecting.  And as soon as he recovers from that one, he will be going in to have his ostomy closed.  That would make six surgeries for our little man.

It is nice to finally have a diagnosis that may explain his issues with anesthesia though.  His last three times under anesthesia at the Children's Hospital here, I have stressed and emphasized to anesthesiology that Gavin has issues coming off of the ventilator.  And every time I have been ignored and watched Gavin struggle to recover in the Post Anesthesia Care Unit.  Having this diagnosis helps the doctors listen, but at the same time, it makes me livid.

I understand to many doctors, that I am just a mom.  But I am a mom of a sick child.  A mom who knows how her son cries sound coming off the ventilator.  A mom who has had to hold oxygen to her son's face to stop him from de-sating.  A mom who has spent MONTHS in the hospital by her son's bed.  A mom who has seen cardiologists, general surgeons, audiologists, opthamologists, various ICU doctors, hospitalists and primary care physicians.  A mom who has seen great medical care and outright negligent patient care.  A mom who has sat in the waiting room for 8 hours while her son was in open heart surgery without positive expectations.  A mom who knows how many swallows her son can take on a bottle before choking.  A mom who knows how to place a feeding tube so her son can eat.  A mom who knows how to put her son's intestines back into his body.  So while doctors all of a sudden listen to a diagnosis such as severely obstructed sleep apnea, I, as a mom, have communicated the symptoms prior to a diagnosis.  He desats significantly in his sleep.  He breathes loudly.  He has cardiac and lung issues.  He spent 45 days on ventilators, CPAP machines, nasal cannulas and blow by oxygen.  He has been under anesthesia six times and exhibits the same symptoms coming out.  But, apparently, he has had to struggle because I'm just a mom.  What do I know? Now that there's a clinical diagnosis, people are bending over backward to do things right. 

Now, please understand that I am grateful for that.  But I am a mom of a sick child.  I expect doctors and nurses to listen to me when I say something is wrong with my child.  To listen when I advocate for my child and not outright ignore me.  This didn't start out as a rant, but there is a lot of frustration in my heart right now.  I feel like I should have fought harder than I have.  I feel justified in my anger and frustration towards anesthesiologists, but I also feel outrage at the fact that they treated me like I was just another mom.  Anesthesiologists only deal with my child for a moment and then they are gone from his care.

But they must understand what it means to be a mom of a sick child.  I have watched my child struggle for life.  I have watched him code.  I have spent days and nights by his ICU bed just praying he would open his eyes.  So yes, I am just a mom.  But I am a mom of a sick child.  Don't mess with my son, because I will take him to a hospital where anesthesiology does listen and does respond to his physical cues instead of treating him like another patient in the queue.  Because that care does exist.  I have experienced it with my son, and that is what makes substandard care so much more infuriating. 

I apologize for the long rant, but I do think it's important to share the struggles and the frustrations that come along with raising a sick child.  I do try to focus on the positive and stay upbeat. Our surgeons are wonderful, and this issue has only been with anesthesiology.  But I think, to understand why we are so grateful for the good times, it is important to note the struggles, fear, frustration and anger too. 

We could certainly use prayers for Gavin. November is going to be a big month for him with either one or two surgeries.  Hopefully, this new diagnosis will ensure him the care he needs and deserves.  The little guy is still growing strong and fighting hard.  No matter how mad or frustrated I get, his smile and his coos make everything better.  He always calms my heart no matter what struggle we are facing.

Friday, October 25, 2013

A Year of Blessings

On Saturday, our little man turned one.  What an incredible journey this past year has been.  From the all consuming fear we felt with his arrival, to the triumphant joy we felt as he overcame obstacle after obstacle...the ups and downs have been extreme.  Yet the downs have been overshadowed by the miracle of the ups.  Many years ago, when I was having a bad day, my grandmother asked me where I was exactly one year ago to that moment.  I couldn't name it.  Her point was that these bad times will at some point be insignificant or just a memory.  A year ago today Gavin coded in the ICU.  I can remember every sound, smell and feeling I had for those terrifying hours as I prayed with every cell in my being that God would spare my child and bring him back to me.  Today, one year later, we are in an amazing place.  Gavin has changed so many lives in this year and has showed us what a strong, resilient, happy and loving little boy he is.  He laughs with his whole body.  He babbles with so much energy and the excitement he exudes when he accomplishes something new in physical therapy would touch anyone's soul.  Four surgeries, two cath labs, weeks and months in the hospital...and he is the happiest child I have ever known.

Gavin is doing GREAT!  He will be going into his fifth surgery in a couple of weeks to reverse his ostomy.  Our baby will finally be whole again.  About a month after his revision, his intestines came back out, so for the better part of eight months he has lived with his intestines outside of his body.  And while it has become a normal part of life for us, it is a much anticipated change to have that wound become a healed scar.  So we are making the rounds to prepare him for surgery.

He got a check in the box from cardiology.  His last angioplasty seems to be holding this time meaning we don't need any other interventions for his heart in the near future.  He has his vaccines up to date and is weighing in at a nice 18 lbs 6 oz.  So close to that ideal 20 lb mark that we thought he wouldn't reach until 2 years old.  Next week we will meet with an occupational therapist to get a baseline for feeding therapy before his surgery, and Gavin will get a swallow study while in the hospital to give us a more comprehensive picture of his feeding challenges.  From a sleep study, we have results that Gavin has severely obstructed sleep apnea.  The doctors and anesthesiologists are working together now to see how that will play into his anesthesia and this upcoming surgery and we will most likely see an ENT before we can move forward.  Gavin is also due for a hearing screen and then we return to the eye doctor to see if he needs surgery on his eyes.  That surgery will have to occur after he has fully recovered from his abdominal surgery.  While this sounds like a lot, Gavin really is doing amazing and overcoming obstacles every single day.  We take the challenges as they come, but these challenges are about improving Gavin's quality of life and we see so much improvement on a daily basis.  I just love this kid!

Gavin is developmentally at the age of a six month old.  And you know what?  I love it.  I am getting to thoroughly enjoy every moment of the baby stage.  He is still so cuddly and loveable.  He is a complete snuggler.  I wouldn't rush through these moments any faster.  We are getting time that others say goes by way too fast.  Every milestone he hits is after months and months of hard work and he earns every bit of progress he makes.  I couldn't be prouder of him.

Gavin has changed our lives in such a profound manner, and through that, many of you have changed our lives as well.  The prayers, the meals, the diapers, the help with cleaning the house, the phone calls, the words of encouragement, the donations of your time and talents....they have all made our journey easier and filled it with faith in times when faith was difficult to find.  I could never properly communicate the impact so many of you have had on our lives, but you know who you are.  Family, friends and strangers who have become both family and friends to us.  Please know that you have made an astronomical difference in our lives and there are wings waiting for you in heaven.

We had such an amazing turnout for Gavin's first birthday at the Step Up for Down Syndrome Walk.  Thank you so much to everyone who came out to celebrate with us and thank you to everyone that walked with us through life over this past year.

 

video

Thursday, August 1, 2013

Visiting Duke

Well, last week we returned to Duke for a few tests and a second angioplasty.  Gavin had another lung profusion scan, a sleep study and an angioplasty to address his left pulmonary artery stenosis.  It took a while to get Gavin's IV in for his lung profusion scan, but every nurse that tried, ended up holding him and singing "Twinkle Twinkle Little Star" to him, because that is the song Lorelai sings to him when he cries.  It was so endearing to see how patient and loving they were towards him.  The lung profusion scan and the heart cath showed that blood flow to Gavin's left lung was reduced by about 50% after the narrowing of his left pulmonary artery.  Luckily, after using two different balloons, the angioplasty was successful enough that he didn't have to have a stent.  The cardiologist warned us that Gavin may still need a stent at some point, but hopefully this buys us some time to get past the infancy stage before we may need to have that higher level of intervention.  There's always the possibility that this fix holds and we're done with cath labs!




We should have the results for Gavin's sleep study next week.  He didn't sleep too well through the night, but he did give me plenty of smiles and cuddles.  He slept fine as long as I held him, but the machines weren't running the tests like they needed to if he wasn't in the crib.  We survived it together and hopefully we'll hear positive news next week.

 
While at Duke, Gavin also received a speech therapy consult because he coughs fairly often when drinking a bottle.  The speech therapist noted that Gavin was showing clinical signs of aspiration while feeding and recommended that Gavin begin feeding therapies pending the results of a swallow study.  I'm still not sure exactly what that means for us, but it's pushed to the "worry about next week" list for now.
 
 
Today, Gavin went to the eye doctor.  His pediatrician recommended the ophthalmology consult a couple of months ago.  Gavin has a lazy eye and he has diminished vision in that eye.  He has to begin wearing a patch over  his strong eye for two hours a day, in order to force his weaker eye to work and grow stronger.  He was also fitted for glasses which he should get next week to help with some of his vision issues as well.  We will try this approach for two months.  If there isn't significant improvement, then Gavin will need to have the issue surgically corrected in about three or four months.  Sigh.  For the record, that would be surgery number six.  So we're going to try the patch and glasses for two months and pray that it works for our baby and that he doesn't need surgery.  Either way, we'll make it through as a family and make sure that Gavin feels all of the love that surrounds him.  Now, to get toy eye patches and glasses for Lorelai, because I know she's going to want some when she sees Gavin's.  Kids are so cool like that.
 
Next week will be Gavin's nine month well baby check so a lot of test results and new plans of care will be developed.  Thank you for all of your kind words, encouragement and prayers.  Our days are getting easier and our little man is growing and changing every day.  His smiles, laughs and coos make everything else so insignificant. 

Saturday, July 20, 2013

Nine Months Old and Proud

Gavin turned nine months old yesterday.  Every time we hit another month of life, I am again blown away by the miracle that he is.  His smile and his laugh make me want to hug him tighter and tell him how much I love him and how incredibly proud I am of him. 

So what specifically am I proud of this month?  Well, Gavin had his fourth operation a couple of weeks ago.  His prolapsed ostomy was revised, meaning his intestines are now back inside of his body (HOORAY!!!!  No more nights crying on the stairs!)  He also had a hernia that needed to be fixed near his ostomy site and he had his tongue tie clipped to help with eating and speech later on.  This was the first surgery that we have taken him to the hospital the day before surgery.  The past three surgeries have all taken place as a necessary life intervening operation when he was already lying sick in the hospital.  This time, he was healthy and while necessary, this surgery was not based on a life or death situation.  PROUD.

When Gavin had his last cath lab visit, the anesthesiologist did not listen to me when I said that Gavin could not come off of the ventilator in the OR.  He took Gavin off early and we sat in the Post-Anesthesia Care Unit watching Gavin struggle until he was given two breathing treatments and two doses of morphine, with the anesthesiologist standing by his bed doing nothing besides humbly stating he should have waited.  I still believe that had the doctor listened and waited a while longer, that Gavin would not have had that experience.  So for this surgery, I was adamant with the anesthesiologist (a different one this time) that Gavin not come off of the ventilator in the OR.  I went through Gavin's past struggles coming out of anesthesia, and she looks at me and says "Ok, well my goal is to take him off in the OR."  Chris looked at me and his eyes got big as I visually changed from polite and conversational to the mama bear advocate who comes out anytime a doctor who does not know my child tries to tell me what he does or does not need when I have lived with him through months of surgeries, ups and downs and hospital stays.  She noticed the change too and quickly said, "I'll wait to take him off."  (What's funny is right before she came in, the nurse that checked us in said she's the mom of a special needs child and she told me, "Mom, remember, you are his advocate here. Advocate, advocate, advocate!")  If there is one thing I can share with parents just starting out on a journey with a sick child, it would be to advocate for your child.  Not every doctor has the right answer and not every doctor knows what is best for your child.  There is nothing worse than having a doctor who won't listen to your concerns.  But there is also nothing better than a doctor who does listen, who includes you in your child's care plan and who genuinely knows and cares for your child.  The latter had been our experience the majority of the time Gavin has been sick.  People who are truly called to be nurses, doctors and surgeons are so often the extension of God's hands and I am forever grateful for the great ones that God has placed in our path to watch over and care for Gavin.

Gavin's surgery went beautifully.  And we were surprised to see him in the PACU not on a ventilator.  The anesthesiologist came out and said she decided to give him some medicine to jump start his heart and breathing so that she could take him off in the OR.  Now him giving him that medication was completely unnecessary and she could have just left him on the ventilator for half an hour more, but I chose to hold off on that conversation until I do my patient care survey.   At that moment, I just wanted to hold my sweet baby.  Gavin was doing great and that medication did get him off the vent without the need for subsequent breathing treatments.  He was given two doses of morphine for pain management and we were in a room in about an hour.  He had one of his nurses we had during his last operation, so there was a home-like feeling of being somewhere familiar.  We were expecting to stay in the hospital for 48-72 hours, but after 24, the surgeon thought he looked great, Gavin was only taking Tylenol for pain and he was eating like a champ.  And we LOVE our surgeon and have so much faith in him, so we were at home and happy one night after surgery.  Talk about being a pro!  Gavin was in a great mood nonstop after surgery and ostomy life is back to being almost easy! PROUD.

We went to see the surgeon yesterday for a post-op check up and he said Gavin is looking great...and that he has a healthy glow to him!  We don't have to go back until Gavin is 20lbs and ready for operation number five to close the ostomy completely.  He weighed in yesterday at 15 lbs 4 oz.  Still tiny for his age but steadily gaining! PROUD.

Gavin also rolled over this month.  After a few months of physical therapy, that is the BIGGEST milestone to date.  I actually squealed and clapped my hands when he did it.  I had a huge smile on my face for the rest of that day and I still get that smile any time I think of that moment or see him roll again.  He has great head control, he's getting stronger with his assisted sitting and next month we'll be ready to try some solid foods.  PROUD.

Next week, Gavin has another big week of tests and procedures.  We will be going to Duke for a lung profusion study to get a better idea on blood flow from his heart to his lungs through his left and right pulmonary arteries.  This will help determine if he needs an angioplasty or stent in his heart.  After his lung profusion study, he'll spend the night at Duke for a sleep study because the cardiologist was concerned about how loud Gavin breathes.  The next morning, he'll wake up and go into the cath lab for that angioplasty or stent.  He'll spend at least one night in the hospital after that, and have a swallow study done before he's discharged. 

As I've said before, there are risks with the stent placement.  Where it would need to be placed is covered in veins and arteries that are typically not there, but have grown in response to his open heart surgery.  This causes an increased risk of nicking any of those veins or arteries.  Also, that stent will have to continually be expanded as he grows which translates to multiple cath lab visits and can only be removed through open heart surgery.  We are praying that the lung profusion study shows no need for a cath procedure at all, but if something must be done, that it is only an angioplasty.  (It's crazy to say ONLY an angioplasty in regards to your child, but it all that he's been through, it really is ONLY an angioplasty!)  Regardless of what procedure he must go through, I KNOW that he will do great, because he is strong and healthy and has a team taking every precaution to do what is best for him.  We are excited to return to Duke and visit the Peds Cardiac ICU to thank all of the doctors, nurses and respiratory therapists who helped save Gavin's life and show them just how wonderfully he is doing!  Look how far he's come since then....PROUD!






Thursday, June 20, 2013

8 Months Strong

Gavin turned 8 months old yesterday.  It's amazing how strong and healthy he looks now!  He is now 14lbs and we have been working with a physical therapist to help him gain strength and meet new milestones.  He is rolling side to side, but hasn't gone front to back or vice versa yet.  His head control is getting stronger and he is progressing quickly with his assisted sitting.  We're hoping to start introducing some solids next month. 

I've been asked by a few people if it bothers me that Gavin isn't doing things that a "typical" 8 month old would be doing.  It honestly doesn't.  He has been through three life intervening operations and had an angioplasty.  He has two more operations and another angioplasty with a possible stent placement.  I could care less WHEN he rolls over, sits on his own, crawls, walks, talks or runs.  I am confident that he will do it all.  But we have been given a miracle in the very life of Gavin and the kid has been through some tough battles.  I am not in a rush to get to the "next" step...I love every minute of where he is now and the fact that he IS here now.  He smiles and laughs and coos and brings so much joy to us.  I'm not focused on milestones...I'm just loving the journey :)

Next week, Gavin will go into surgery for an ostomy revision.  The surgeon will essentially re-work Gavin's ostomy so that all of his intestines will stay inside of his body and make ostomy life a little easier for us.  Gavin's prolapse is so significant that there is a real risk of infection or some type of outside damage to the intestines.  He will still have the ostomy with the goal of 20lbs before he can be closed up for good.  But his intestines will finally be back on the inside, his hernia will be fixed and the surgeon is also going to clip Gavin's tongue tie.  If all goes well, we should spend 2-3 days in the hospital.  While I'm nervous, there is a little dance going on for no more pushing intestines in!

On the same day Gavin has surgery, our Rottie will be having orthopedic surgery.  Last year, this might of overwhelmed me.  This year, I'm using my support system to make sure everyone is taken care of and where they need to be.  That translates to: I love my parents!

I'm nervous and scared, as usual, with Gavin going into surgery.  But Chris is here and this surgery is about making Gavin better, not saving his life.  He is strong and healthy.  Stronger and healthier than he has ever been going into the OR.  The surgeon today went through the risks associated with surgery and commented that he feels silly telling us since we're pros now, but he had to do the obligatory speech.  I don't have as many questions as I used to because I have learned so much in the past year.  I feel extremely comfortable with the surgeon and my baby boy is amazingly resilient.

In about a month, Gavin will go to the cath lab at Duke.  Before that, we will do a swallow study, a sleep study and a lung profusion study.  The first two are somewhat normal in the overall care of kids with DS.  Gavin chokes pretty often on his milk, which is most likely a lazy trachea, but the swallow study will let us know if it is something more serious.  The sleep study will check for any signs of sleep apnea, but at this point, the test is more an aggressive approach to Gavin's care than any real concern.  The lung profusion study will again look at the blood flow from Gavin's heart to both of his lungs.  This will determine what will happen in the cath lab.

The cardiologist at Duke is hesitant to put a stent in Gavin.  At  this age, the rate of growth is so rapid, that Gavin would have to go back to the cath lab several times to adjust the size of the stent as he gets bigger.  The hope is that the profusion study shows things are fine, or that an angioplasty may fix the problem.  Putting hardware into Gavin's heart will be a last resort.  I love how cautious and comprehensive the care is at Duke.  They are truly amazing.

At this time, those are our big summer plans.  We always stay flexible for the unexpected, but it feels like we are in a good place and staying in that good place for a while.  I think to where I was a year ago when I first found out that Gavin had DS, and where I am today.  Talk about a blessing in disguise.  This little boy is so perfect and exactly as he should be.  Who knew that so much fear and doubt could become so much hope, confidence and love?

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!

Friday, April 12, 2013

Filling the Gaps

During Gavin's last hospital stay at CHKD,  I met another mom with a son who had some of the same health issues Gavin has.  She told me that God does give us more than we can handle sometimes, but during those times he fills the gaps with others who will help us through.  This takes me back to the force of guardian angels surrounding Gavin and our family.

It wasn't even two weeks ago that I broke down on my stairs at being so overwhelmed and feeling like I couldn't make this journey on my own anymore.  I sat there holding Gavin with Lorelai sitting beside me, and broke at the reality of not being able to do this on my own.  And then the most amazing thing happened.

I literally saw a jaw dropping force of guardian angels rise up to fill those gaps for us.  Within hours, there were phone calls of "Tell me what to do." "We want to help." "What do you need?"  There was a site set up for people to bring meals during the week to make our nightly schedule a little easier.  There were people from out of town asking how to help.  There were friends of friends who said, "I'm here for whatever you need."  Not that people haven't offered to help before, but this was the first time I had a spirit to be able to accept that help.  I don't even know the vast majority of these angels who have come to help us.  But I do know, that every single person has been hand picked to come into our lives and help us in times when we are not strong enough on our own.

The sweetest couple came over to deliver dinner one night, and mentioned that Gavin was on their church's prayer list.  I always love hearing stuff like that.  Gavin is a very special little boy.  He has churches all over the country praying for him!  An old family friend who happens to live in the area, came over to help with a bag change AND some much needed adult conversation!  To just have a moment that wasn't about work or the kids was a rejuvenating.  Last night, I was just beginning to have trouble with a bag change when my doorbell rang with an angel bringing dinner, and an extra set of hands to help with a bag change.

One morning this past week, I opened the door and there was the sweetest card and two stuffed animals on the front porch.  The note said it was "something to brighten Lorelai and Gavin's day."  As a mom, seeing love and consideration like that for your children makes your day too.  Lorelai put Gavin's gift in his carseat, and she did so for the rest of the week every morning we were getting ready to head out for daycare.  She has taken her toy to daycare every day too.  I asked her if she knew who brought her the present, and she said, "the Easter bunny rabbit."  I had to laugh.  I told her no, that an angel came by our house and left us a little piece of love that day.  Now everytime she holds that toy, or points to Gavin's, she says that it's from the angel.  Just tonight, I got a message that two sweet boys wanted to mail us a picture to make us smile since we were having such a hard time.  That is so heart warming. 

I cannot express enough how comforting this has all been.  I hope that everyone knows how much this means to our family, and how grateful we are for this powerful force of guardian angels.  Things have gotten to a point where I cannot physically do it all on my own.  But as soon as I fell down, our family was surrounded by an army that picked us up and are carrying us until we become stronger and learn to handle the weight of these new challenges.  There is darkness and apathy that makes our journey more difficult.  But I have to say, that those darkeset times are no comparison for the light and grace that floods our path and brings us through the harder days.  For the hard times, tears really only come on the days that I feel like I cannot do what is best for my children on my own.  If my life is harder, oh well.  But when it seems as though my kids are suffering, that is heart wrenching.  But I can never control the tears that come from someone's kindness and generosity.  You may think you just cooked a meal.  Or dropped off a stuffed animal.  Or wrote something encouraging.  Or mailed a picture.  But those actions have so much impact on our lives that I could never appropriately thank everyone for exactly what you have provided.  More time to spend with my kids.  More smiles on their faces.  One less item on the to do list.  Hope.  Love.  The beauty of humanity.  Kindness.  So to all of our guardian angels, to all of you who have followed our story and given us strength, thank you for filling the gaps when our burden was too heavy to carry on our own.  Thank you for surrounding us in love.

Friday, April 5, 2013

"The New Normal"

I took Gavin into the Pediatric Surgery office yesterday to have his ostomy looked at again.  I was still pretty overwhelmed from the night before, so as soon as I went to check in the tears just started flowing.  For those of you who have not spent time in a children's hospital, the MINUTE you start losing it you are surrounded by staff members and other parents giving you tissues, hugs and words of encouragement to keep hope and faith and stay strong for your kid.  It was the same way at Duke.  When you are surrounded by staff and parents who see kids struggle every day and share the commonality of having a "children's hospital" child, there is unspoken empathy and understanding that surrounds you.

This is hard.  Really hard.  It would still be hard if Chris were here, but certainly more bearable.  The surgeon came in and looked at Gavin and said that having that 11cm out was "normal."  And that his intestines bleeding into his ostomy bag was "normal."  He gave me some different methods and tips for pushing Gavin's intestines back in, and mentioned how "normal" it was for them to come out and get pushed back in.  It may be normal for a surgeon who is looking inside the human body on a near daily basis, but for me, as a  mom, it is NOT normal.  Gavin's intestines are still pink and the surgeon felt that most of Gavin's appearance of discomfort is because he is sick, because he has this bad cough where he coughs so hard he pushes everything out.  I'm always learning new things.  The surgeon said that we have thousands and thousands of nerves in our hands, but only one in the intestines.  So Gavin doesn't really feel me touching them, he probably just feels the pressure of me pushing on his stomach.  That helps some....but only if I repeat it in a way that equates to brainwashing.

Gavin could go into surgery to make his ostomy smaller, but without a life or death situation requiring it, they don't want to put him under anesthesia with his heart condition until they absolutely have to.  As long as his intestines are healthy, inside or outside of his body, they don't want to go to surgery.  So our new normal is a LOT of intestines visible on the outside of Gavin's body.  I was going to post a picture, but then I thought against it for those who may feel queasy seeing it.  The surgeon also said that I could put sugar on the intestines and they may go in some on their own.  That gives me a mental picture of a slug and salt, therefore I do not think I will be putting sugar on Gavin's intestines.

As I was getting Gavin dressed to leave and the tears of being so overwhelmed and alone during this kept flowing, the surgeon patted me on the shoulder and said, "Hey Mom, you realize that you are probably over qualified for this right?" I corrected him with under qualified and he said, "No, you're really over qualified to care for this.  If you can place feeding tubes and go through the past six months as essentially a single parent with all this kid has been through, then this is nothing.  No sharp objects around the intestines.  Push them right back into the opening.  You're just going through a rough patch.  It will get easier.  It has before, and it will again."  I still say I'm under qualified for this, but I will take the motivation from his words!

People often ask how they can help.  As a naturally independent person, it is hard to ask for help.  Near impossible to accept it.  I can't even articulate what I need most days, besides "another parent?"  I really do feel like I get through most days just fine.  The hard ones are the darkest of days, but I get through those too.  I feel ashamed when people talk about how strong or positive I appear to be.  I don't want it to seem like there is always strength and good energy.  Some days there is immense anger.  Some days heart breaking tears.  Some days indescribable fatigue.  Some days all consuming negativity.  Most days, though, simply waking up to his face and holding my 10lb (ALMOST 11 lb) miracle is all the strength and optimism I need.  I may feel like I fail sometimes, but I know without a doubt that he knows that I love him and I am always there for him.  And there are always people fighting bigger, tougher battles than we are.  I am grateful that we aren't in the hospital right now and that, although this current challenge is unnerving,  Gavin is as healthy as he can be.  I am grateful that we are able to put food on the table for our kids and a roof over their heads.  I am grateful for an every growing support network and love for my son, even from people I may never meet.  I am grateful for every message of encouragement that people take time to send our way.  I am grateful that we have so many lifting us in prayer.  I am grateful for those who have travelled a difficult journey before me and are able to offer words of wisdom and evidence of surviving it all.  I am grateful for every breath that Gavin breathes and that he has a big sister who will always watch out for him.  When Gavin cries, Lorelai will go over to hold his hand and say "It's ok Gavin" before giving him a kiss. 

Gavin's story is one of real struggle.  Highs and lows.  Triumps and defeats.  Medical miracles and nights sobbing on the stairs.   But his story, his life, is beautiful, amazing and inspiring.  To have beat the odds he has and to be so strong through days when his intestines are hanging out of his body is nothing short of incredible.  When he was born, he couldn't eat or breathe on his own.  When part of his colon died, he couldn't eat or expel waste.  Well, today, THIS day, he eats just fine, his oxygen levels are great and his ostomy is working. 

I am simply adapting to a new normal for our lives, and I know that at some point, I will look back on these days and they will be more we have conquered and moved beyond successfully.  This ostomy will not last forever.  One day his intestines will be secured back into his body and there will only be a scar to remind us of this battle.  It obviously won't be today, but I'm sure something during this journey is meant to greatly bless our lives or that of someone else who comes across our story. 

Wednesday, April 3, 2013

Hitting a Wall

I have so many updates it's hard to decide where to begin.  To say the last month has been tough would be an understatement.  There are so many obstacles and emotions right now, and at this moment, I have silent tears streaming down my face. 

Last week, I was changing Gavin's ostomy bag and noticed that his stoma was about twice the size it usually is.  I took a picture and sent it to our pediatrician, who called me immediately and instructed me to stop feeding him and take Gavin to the ER.  I tried to focus and stay as calm as I could while getting both Lorelai and Gavin dressed and getting a diaper bag and snacks ready for Lorelai.  Going back to the ER with both kids and no idea what to expect was unnerving and overwhelming, but it was my only choice so off we went.  In the ER, a doctor from general surgery came and looked at Gavin's ostomy and said that Gavin had a hernia and a prolapsed ostomy, and that he may need to go into surgery fairly quickly.  She took some pictures and sent them to the attending surgeon on call, and the attending felt we could wait until our surgeon saw Gavin later during the week.  So from Sunday through Thursday of that week, I thought Gavin would be going back into surgery, and of course, figured Chris would not be able to come home for it.  The surgery to close Gavin's ostomy ideally will happen when he reaches 20lbs and it will be a very physically demanding surgery for him.  Not that any of them haven't been, but this will fall near the realm of his open heart surgery as far as the strain and pressure it puts on his body.

I tried getting in touch with Chris to let him know that Gavin was in the ER and they were talking of possible surgery.  I couldn't get in touch with him for about two days, and when I finally heard from him, he told me that he had gone into surgery because he broke his hand during PT.  You may have felt the earth rumble that day.  I was mad at him for not telling me,but apparently he was sent to the hospital and within about an hour of being there he was in surgery.  I was LIVID that his command knew that he has a critically ill son and didn't feel the need to notify anyone.  Had Gavin actually gone into surgery that night, or if I needed Chris's input on a big medical question/decision for our son, I wouldn't have been able to have that conversation, because again, the people in this chain of command have no moral compass or professional due diligence.

A few days after the ER visit, we went to see the chief of surgery, who did Gavin's operation in January.  He said that Gavin's intestines were prolapsing, or coming out of the ostomy, because he was so severely swollen during surgery that the ostomy was not able to be made small enough to keep everything in.  Gavin has a cold, so when he coughs really hard, he basically coughs some of his intestines out.  There were 3cm of Gavin's intestines out at that point, and the surgeon just reached over and pushed them back in.  I was certainly not ready for that.  He would like to hold off surgery as long as possible, because the bigger Gavin is, the longer his repair will last.  That being said, if he needs to go sooner then we have to do what's best for Gavin.  One issue with more of Gavin's intestines out, is that it is much harder to get an ostomy bag over everything.  That process is hard enough with only one set of hands, but you add more insides on the outside and a bulge under the skin as he pushes them out and the process becomes nearly impossible.

Yesterday, I took Gavin back to the doctor because a lot more of his intestines came out. 11cm to be exact.  This time our pediatrician offered to help out to save us a trip to the ER.   She said that she would help push them back in, but that she would try to mimic what I would need to do since I'm by myself and would only have my one set of hands.  (For the record, how to push your child's intestines back into his body was not mentioned in What to Expect When You're Expecting).  She used her forearm to hold down Gavin's legs, while her left hand held the sides of the stoma and her right hand slowly pushed the intestines back in.  Then I took over putting the bag on, but it had to be a fast transition because some intestines came back out.  What wasn't taken into account was the nurse holding Gavin's arms and me holding his bottle while the doctor pushed the intestines back in with her two hands.  That's three sets of hands, not one.

The whole process and concept freaks me out, but again, I have no choice but to learn how to do this and figure it out on my own.  The whole way home I thought about how the Marine Corps has decided that we don't have a hardship or emergency situation.  I would really like to ask those people when they last pushed any human being's intestines back into their bodies...by themselves.  I guarantee the majority of those people making decisions that affect the well being of my family could not walk a single day in my shoes.  That same night, I had to push Gavin's intestines back in twice on my own.  That's tough.  It is certainly uncomfortable for Gavin, whether they are coming out or getting pushed in and to see his pain is heartbreaking.

Today I got an email from someone at Chris's command citing the Privacy Act and PII as a reason they didn't tell anyone that he was in surgery.  There is an exception to the Privacy Act when it comes to health or safety issues, and a MARADMIN that allows for notification of next of kin in the event a Marine is hospitalized or goes into surgery.  I was livid after reading this email.  For one, the command assumes I am not educated and would actually believe that PII is a reason to not disclose a surgical status.  PII involves information like a social security number, date of birth, address, etc.  So I replied back with some MARADMINs and Marine Corps Orders of my own and stated that insulting my intelligence or outright lying to me was not going to excuse their behavior.  After all they have put us through, they have the audacity to try to talk policy, procedures and acronyms as if it would confuse me and shut me up.  Man, did they assess me wrong.  I don't know that I will ever be able to excuse what they have put us through.  I think back to all the feeding tubes that I've put in on my own.  All of the ostomy bags I've changed on my own.  All of the nights at the hospital, ER visits and doctor's appointments I've done on my own.  And now putting Gavin's intestines back into his stomach on my own.  And the best this command can attempt to do is hide behind policies and procedures as though no exceptions exist and assume that I will accept what they say as truth.  My anger at this situation grows exponentially every day.  Had anyone in the Marine Corps been looking out for Chris, he would have been here with us through all of these trying times per the policies and procedures that Marine Corps has put in place for situations like ours.

So on to the tears for tonight.  I got a message from our babysitter today that Gavin's bag was leaking and that a lot more of intestines seemed to be out.  So when I got home from work, I started to prep everything for pushing Gavin's intestines back in and replacing his bag.  The poor kid was so uncomfortable.  I spent about 45 minutes holding Gavin's intestines and trying to slowly put them back in as he screamed and tried to push them back out.  During this, Lorelai is crying because she doesn't feel well and she keeps saying her tummy hurts and asking me to hold her.  I obviously can't hold her and Gavin's intestines at the same time.  She calms down and gets her foot stool so she can climb up and hold Gavin's bottle for him.  I hate that my two year old has to help me with these things, but she does her best and is a great little helper.  Of course, Dora wins out on the help so she went off to watch Dora.  I tried forever to get Gavin's intestines in.  He was squirming and crying, poop was coming out and going everywhere and when I tried to put a bag on, the intestines came out a little bit again and I couldn't seal it so the process had to start again.  Right now, his bag still isn't sealed right, but after 45 minutes we both needed a break.

As I was walking downstairs with him, he coughed and  that same 11cm came out again.  I just broke down.  Halfway down the stairs with Gavin in my arms, I just sat down on a step and held him close to my chest sobbing.  I was sobbing that I couldn't help him.  That I couldn't figure it out.  That I was hurting him and that he has to go through this.  That I couldn't soothe him and care for his wounds at the same time.  While I was crying, Lorelai came and sat beside me on the stairs and started crying because her tummy still hurt.  Gavin was still crying in discomfort from having just pushed his intestines out again.  The three of us were a hot mess having our breakdowns together on the stairs.

Then, Gavin's ostomy started bleeding so I called the on-call surgeon and spoke to him for about ten minutes.  The bleeding is normal with so much prolapse, but he said we need to come in tomorrow to have Gavin re-evaluated now that he has so much intestines coming out.  It's significantly more than when we went to see our surgeon last week, so now the surgery talk is back on the table.  Gavin is almost six months old, but he's still the size of a newborn so he needs all the blood he can keep.  Especially since he usually requires a blood transfusion prior to surgery anyways.

There are many days I somehow stumble and make it through ok.  But today isn't one of those days.  Today things just seem like too much.  The hot water heater broke this week, both kids are sick, having to put Gavin's intestines in on a fairly regular basis combined with working full time, doing laundry, cooking dinner and attempting to keep the house somewhat clean is just more than a one person battle.  I have tried so hard to be strong and just keep pushing through the days these past six months.  But today was a breaking point.  And we're only halfway through this deployment.

I know I will wake up tomorrow and start a new day.  That means that I will have survived today's challenges and hardships.  Of course, tomorrow will have the same obstacles, but I will just have to take a deep breath and remind myself of the other impossible days I have made it through.  But for the rest of the night, I will continue to hold my little miracle as he sleeps and whisper my apologies for hurting him and tell him over and over how much I love him.  At some point the tears will stop, but for now the immense love I have for my kids, combined with the frustration and overwhelming nature of our lives right now will have a much needed release.  It feels like I have hit an emotional wall.  But, I will kiss them both goodnight and wake in the morning to my two amazing blessings, take a deep breath, and fight through another day. 

Gavin has fought enormous battles through fatigue, weakness and a battered body.  He will get no less from me.  I'm exhausted, broken and dejected at times, but I will fight through it all as Gavin has.  We fight for each other and gain strength from each other.  We cry together and survive together.  And tomorrow we will laugh together and thank God that we have made it another day to walk our path together.

Thursday, March 21, 2013

Who I Am

 
Today is World Down Syndrome Day in honor of raising awareness of Down Syndrome and those individuals who are blessed with three copies of the twenty-first chromosome.  My amazing son Gavin, is a precious, amazing baby boy who happens to have Down Syndrome, and prior to his diagnosis we knew very little about it.  But guess what?  It's not nearly as bad or as scary as most people think.  Ninety percent of pregnancies with a prenatal diagnosis of Down Syndrome are terminated.  Hopefully, we can help change that statistic by raising awareness of Down Syndrome and show how amazing these kids and adults are!  I also hope that through raising awareness, that the path continues to open and grow for our kids to thrive in mainstream classrooms, sports teams, drama clubs, etc.  A common theme for Down Syndrome is "Who I Am"....so thank you for sharing in our story, in our journey and in our miracle.
 
 
WHO I AM
 

I am Heaven sent
 
 
 
I am a son



I am a little brother
 
 
 
I am a grandson 
 
 
 
I am a great-grandson 
 
 
 
I am a miracle 
 
 
 
I am a fighter 
 
 
 
I am a gift
 
 
 
I am independent 

 
 
I am an inspiration
 
 
 
I am Gavin
 
 
 
 






 
 
















Wednesday, March 6, 2013

Staying Strong

Gavin has been doing really well lately.  He is 10 lbs 2 oz and steadily putting on weight.  The growth charts are now on a steady incline!  Last Monday, Gavin had another echocardiogram to examine how his heart is doing after the last cath lab procedure.  He was such a pro during the whole thing.  He laid completely still and just cooed the whole time.  The results of the echo showed that Gavin's right pulmonary artery was measuring at a 10, but his left pulmonary artery (LPA) was still at about a 5 which is where it was before he went into the cath lab.  The angioplasty did not hold.

Our last visit to the cath lab, the cardiologist decided against putting a stent in Gavin's heart, because the area where the stent needed to be placed would have caused it to cross over into another artery.  This was because of Gavin's size and his heart being so small.  As he grows, and as his heart grows with him, more space will develop between those arteries which will cause less concern for the stent placement.  If the stent nicks the other artery, or even if it ends up crossing into that artery and causing problems, the only way to repair that would be with open heart surgery.  And no one wants Gavin to go through another open heart procedure so soon, and unnecessarily, after his last one.  But if blood flow is significantly slowed to the left lung, then we are back to concerns about whether or not his left lung will grow and develop normally.  So we were again at a point of having two options, with neither alternative being ideal.

So before rushing into the cath lab, we headed off to radiology for Gavin to get a lung profusion study.  Basically, they lay him in an MRI type machine that takes video of blood flow from his heart to his lungs.  Then, an exact percentage of blood flow can be measured and that measurement is what the cardiologist would base his decision on for our next step.  Gavin, again, was a pro!  He had a full belly of milk and just laid there.  The cardiologist asked me a few days later if Gavin had to be sedated and I told him no.  He said that was great news, because the radiology lab was always trying to sedate patients for that procedure, and now he could use Gavin as an example of a successful exam where the patient did not have to be sedated.  I was proud of my little man for being able to be that example and success story!

Well, the lung profusion study results came back yesterday.  Gavin's right artery has about 62% blood flow and his LPA has about 37%.  That, to the cardiologist, was an acceptable difference to not have to rush Gavin back into the cath lab.  So now we wait another month before we run through this test again.  It's possible that Gavin's LPA may grow on its own, or that any additional time we can buy allows his heart to grow bigger so that the procedure will be safer.  It feels so awesome to be on a roll with the good news lately!

Gavin does have a little cold right now, and he's coughing up a storm and pretty hoarse.  He's been checked out though and it's just a normal cold.  With his heart condition, there's always a concern of fluid building around his heart when he gets sick.  But for now, he just has his first baby cold!  I told Chris that Gavin's hoarse cry was so sad...that it sounded like his "just coming off the ventilator cry."  How strange it is, not only that your child has an "off the ventilator cry", but that you've heard it and been through the process enough that it is a somewhat common sound.

It just makes me so grateful for Gavin and what an incredible fighter he is.  While at his last echo, the cardiologist was examining Gavin and just commented on all of Gavin's scars and how Gavin has been through the ringer.  While a little disconcerting coming from a pediatric cardiologist, I had to smile.  Yes Gavin has been put through the ringer.  But he has survived it all.  He has come out of every fight stronger than the one before and he continues to get better with each passing day.  When I hold him and feel his heart beat and listen to his breath, I just have to close my eyes and absorb that miracle into my soul.  And when times get tough, I get look at my son and remind myself, that they have been tougher and we survived that too.  And because of those struggles, we are a stronger family with a stronger faith.







Thursday, February 21, 2013

Riding the Roller Coaster

We are still holding tight on this roller coaster ride that 2013 is giving us.  We would like to thank everyone who helped us reach out to our Congressman.  A Congressional inquiry was filed on Chris’s behalf a few days ago.  The command has thirty days to provide a response.  Unfortunately, in the consistency with the mediocrity of this command, Chris was told as soon as the Congressional inquiry was received that his life would be made more difficult, and that has begun.  This command has done nothing but make every step of this experience more and more difficult for us.  From questioning every Red Cross message, to requiring me at 8 months pregnant and as a mom of a 24 hour old baby, to request that a surgeon, provide a probability of death for our son.  Chris has been at this command for nearly six months now.  And despite multiple Red Cross messages, emails from doctors and surgeons, and our EFMP paperwork, the command has yet to begin the process or even discuss the possibility of granting Chris a hardship transfer.   It is unfathomable that the United States Marine Corps is inherently unable to send one decorated Marine home to be with his family in times of PROVEN medical hardships.  But it seems that everywhere we turn these days, the people in a position to help are either morally inept or generally apathetic and incompetent.  Our request has not been unreasonable by any means.  There’s not but so much you can do when only bad human beings and “leaders” hold the power.  How long do you fight a fight that you have no chance of winning?
That being said, I refuse to let those human beings who lack any common decency or humanity to change who I am as a person.  As frustrating, infuriating and heartbreaking as this treatment has been, I am choosing to learn from it.  I will work to be kinder to people in general.  To be slower to judge others and more willing to help those in times of need.  I will be appreciative of the blessings and miracles I have been given, and not be so quick to let the hardships and moments of darkness overwhelm me.  It’s amazing how quickly we forget all of the wonderful things in our life when things get difficult.
And speaking of wonderful things in our life….I was amazed at the outpouring of love and support everyone showed by wearing red on Tuesday in honor of Gavin.  For those of you who don’t know, February is heart disease awareness month, and on Gavin’s 4 month “birthday” we asked that people wear red in support of our little man being a congenital heart disease survivor.  It warmed my heart and brought a smile to my face to see all of you supporting our warrior!
Gavin went for his four month well baby check on Tuesday.  His pediatrician said that he looked completely healthy for the first time ever!  He weighed in at 9lbs 13oz, had great color when he’s usually a little dusky, and somehow there was no evidence of a heart murmur which has always been present!  I was standing in the exam room beaming ear to ear with pride in Gavin.  He gets his heart checked out again Monday, but other than that, we only have to go to the doctor every two months as a normal newborn would instead of every two weeks! 
I also feel like I’m finally hitting my stride with working full time, doctors’ appointments, taking care of both kids and handling the ostomy bag.  I am stunned that what was once impossible and overwhelming, has somehow become my every day, manageable norm.  Having a wonderful support network, constant words of encouragement and two kids who inspire me to smile and love with my whole soul are the pieces of strength that get me through the hard times.
Now for some MORE amazing news.  We were told that insurance refused to cover $385,000 of medical expenses at Duke.  (I will leave the healthcare debate alone, but at four months old, Tricare has yet to provide a policy number for Gavin and Medicaid has lost our paperwork three times now.  So thank goodness for private insurance).  I called Duke to ask about setting up a payment plan.  They said our remaining balance was $2,000.  I confirmed our account number and asked about the $385,000 and was told that the only thing owed to Duke was $2k.  So whether the hospital settled with the insurance company, or provided necessary documentation, or a charity organization helped on our behalf, those expenses were somehow covered.  AND, so many of you generously donated to the Give It Forward fund my cousin set up for Gavin, and we were able to cover 50% of that remaining balance on the spot.  By the end of March, we will be debt free at Duke.  How did that even happen? 
So the mental and emotional roller coaster ride is still going strong for us, but today I draw inspiration from my children.  I choose to love like a child does.  Laugh like a child does.  And forgive like a child does.  The world does jade us all, but what happens to us does not need to define us.  We must learn and grow from hardship and strive to become better versions of our current self.   While half a dozen poor leaders have put undue obstacles on our journey, nothing they throw at us can compete with the fact that God has given us a miracle.  So throw us on a roller coaster and keep the obstacles coming.  While difficult and unfair at times, none of it will be strong enough to break our spirit because we have lived through miracles.  And the largest of those miracles happens to be a warrior surrounded by a force of guardian angels that no burden can compete with.  

Saturday, February 9, 2013

Guardian Angels

I am beyond thrilled to share that Gavin has had two GREAT appointments lately!  His surgeon was very happy with how Gavin's stoma looks and doesn't need to see him back for six months.  And his pediatrician is thrilled that he is putting on weight and developmentally on track despite all of his setbacks.  This boy is a fighter and he certainly inspires me every day.

Gavin has finally started cooing some.  He has the voice of an angel.  He is becoming much more active and watching him grow is so empowering.  There are still difficult days.  Ones where negativity becomes all consuming.  But we survive those days and wake up to start a new day with a new energy.  There's no way to remain positive at all times.  It feels like we are running a race.  A race where spectators are lined all along the course, and as we get tired or hit our breaking point, voices from the crowd urge us to keep going...to push through.  And that motivation that each of you has given us has helped us through those tough times when another step seemed impossible. 

Someone asked me the other day if God has revealed his purpose in giving me Gavin.  I still don't have an answer for that, but here's what I have learned.  I have struggled in my relationship with God for years.  Not sure if I really believed in him myself, or if I believed because I was raised to believe.   People have often said that you have to have faith.  Well, it's hard to maintain faith in people and in God when you live in a such a jaded world.  I am a person that needs to see it to believe it.  But once you see a miracle....experience a miracle....LIVE a miracle.....you have seen it and you can't help but believe it.

There are times in life when coincidences occur.  And then there are times that you reflect on your journey and realize that your life was not a series of circumstances, but a beautiful, messy plan that brings you to exactly where you are meant to be. 

Is it a coincidence that out of the four colleges I had to choose from, that I chose to go to Charlotte?  While at Charlotte, that I was introduced to Krav Maga and found an instructor who, to this day, has been one of the most inspirational people that I have ever met?  He gave me the quote, "If you fall down seven times, get up eight."  He taught me that the fight's not over until you're dead.  That the spirit of a warrior is equally, if not more important, than the skill.  Is it a coincidence, that nearly ten years ago, these lessons were being instilled in me?  Or that I decided to join the Marine Corps on a whim?  That some of the women I met in the Marines, continue to inspire me and give me examples of strength every day.  That being in the Marine Corps allowed me to cross paths with Chris who is my exact balance in life.  A man who has a heart to love unconditionally, a giving spirit and patience that rarely runs out.  Chris has been through more pain and struggle in the past ten years than one person should.  But you would never know it.  He is humble man, persistently optimistic and the best father a woman could want for her children.  (After my father, of course :) )

My father decided to change his career course several years ago.  While a struggle for him at the time, it put him in a position to have the flexibility with his current job to be here when we needed him.  Is it a coincidence that my dad is in a medical career field, which made me feel more comfortable leaving the hospital with Gavin knowing I had my dad's medical experience to fall back on for the first few days out of the hospital?  My mom was affected by lay-offs.  And she chose a direction in her work to have flexibility to be with me when needed as well.  She has been able to watch Lorelai while we spent months at the hospital with Gavin.  And, (by coincidence?) I grew up in the same town as my grandparents.  At times when my mom could not watch Lorelai, my grandparents were easily able to step in and help out.  I had to travel for work two weeks ago, and with Chris gone I had no one to watch Lorelai and Gavin.  Is it a coincidence that my parents are in a position to drop everything and spend a week watching the kids at my house?  Or that my mom is always around to spend the night at the hospital when fatigue has broken me down? 

Is it a coincidence that two years ago, Chris had a cousin who spent months in the NICU with her son?  That she was able to be a source of support and help provide encouragement on the harder days?  That Chris and I have settled in an area where we are close to both of our families?  And that his family has been able to meet me in the emergency room with Gavin when I was on my own, or that his aunt has been able to care for Gavin in our home four days a week while he cannot be around others?  Is it a coincidence that my grandmother somehow always has a card of encouragement in my mailbox the exact day that I need it?  Or that a phrase from my other grandmother sticks in my head on the bad days?  When my aunt was in the hospital recovering from brain surgery, I held her hand and told her it was ok.  My grandma said, "No it's not, but that's ok too."  That comment holds so much power for me these days.

Is it a coincidence that my sister-in-law only lived about an hour from Duke, and found herself in a position to be able to drop everything and be with me through Gavin's delivery?  Or that she made it there only 20 minutes before he was born?  And that she happens to be a Godly woman who gives me encouragement when I need it?  Or that my brother sometimes works at Duke?  So he was able to stop by and see us and Gavin in the ICU while he was at work.  Is it a coincidence that a photographer, now friend, that I found when we first moved here, happened to know someone with a child with Down Syndrome?  And that person happened to be a source of advice and strength that truly understood what we were facing?  That she recommended we go to Duke?  Where every parent in the cardiac ICU had strong, unshakeable faith in God.  That Chris's deployment strongly affected our decision to deliver at Duke so that I could be close to my family?  That I work for a company that has been beyond measure in the support they have given me as we have endured Gavin's battles so that I have not had to worry about job security on top of everything else? 

Or how about the fact, that while I was on travel for work, I met someone who has a sister with down syndrome?  I started telling him about Gavin, and he said "Wow.  You're sitting here helping us like nothing is going on...like you haven't been through all of that.  You must be a warrior."....someone who has never heard Gavin's story and has no idea what the word warrior means to us.  And is it a coincidence, that the only name Chris and I could agree on was Gavin?  We didn't even know that it meant "white hawk of battle" until weeks after we picked it.  Or that his middle name, which is my father and grandfather's name, means "ruler of an army."  We didn't pay any attention to what his name meant when we picked it, but is it a coincidence that we gave him a warrior's name?

And the answer that I have found to all of those questions, is a resounding no.  None of it has been a coincidence.  Every step, turn, stumble, success, and failure on my LIFE journey has prepared me for exactly where I am today.  Surrounded by friends and family who have been teachers, coaches, mentors and cheerleaders.  Gavin is our GOD GIVEN miracle.  We were encouraged to terminate the pregnancy.  We were told it would be a medical miracle to ever bring him home from the hospital.  We were prepared for him not to survive his open heart procedure.  We watched as the blue code cart was rushed to his bedside as he crashed in the ICU.  We had a huge sigh of relief as he came home from the hospital knowing that his fighting was done.  Only to find out that part of his colon was dead and required surgical intervention. 

But now have breathed a second sigh of relief.  Gavin IS home.  He IS gaining weight.  He IS developing normally.  He IS as healthy as he can be right now.  He IS fighting back.  And he IS winning.  Because God gave Chris and I battles to mold us into strong people, before we ever knew of each other.  God prepared us with strength for this journey and he molded Gavin into a fighter of epic proportions.  Gavin has survived battles that no one thought possible.  And he has survived them as a physically stronger person than he was before he entered them.  He is such an inspiration! 

And every single one of you who have helped us on this journey, who have prayed time and time again for Gavin to have strength to make it through, who have sent messages or provided dinner, or who have sat with us through surgeries, visited us in the hospital, pushed us through fear.....each and every one of you are a guardian angel sent by God to help us through our journey.  We are certainly blessed by all of you.

So through these past few months, I have learned without a doubt, that God is real.  I have seen his miracles.  And his guardian angels...