Project Brinkley

We need your help!  People all around the world (literally) have prayed for Brinkley through this journey.  We want him to know that and to know you.  I would like to create a memory book for him and we want you in that book.  If you or someone you know has been praying for our family during this time we would like to ask you to do a little something for us.  Please take sometime next time you are out and find a postcard from the place that you live (generally you can find them in Walmart or a drug store).  Be sure to put your name on the back and any message that you would like to add.  I'll collect the postcards and put them into a book that we can share with our boys.  Just think how cool it will be to show both of them how loved they are by people that they may have never even met.  Thanks for indulging me and sending your postcards.  

For the sake of safety we would ask you to send the postcards to our church address so that we do not have to post our home address.  If you know our home address, feel free to send your postcards there.  Otherwise, here's the address:

Brinkley Holder
c/o Marathon Church Pickens
PO Box 837
Pickens, SC 29671

I thinks he likes this too much

Apparently Brinkley prefers doctors and nurses to his family.  After being home for less than 48 hours Bryan pointed out that Brinkley was breathing very quickly and not very deeply.   Sunday morning his breathing was still off so I connected his 02 meter (his number should be 94-100).  After 30 minutes on the meter the best number I could get was 85 so I decided it was best to take him to the ER.  

I quickly learned that they do not waste any time seeing heart patients.  Brinkley was immediately taken in and the evaluations began.  It was decided to admit him to continue evaluating him and keep him on oxygen.  As soon as a room was available we were moved up to PICU.  He is still being monitored and we have not been given any indication as to when we may be discharged.  

Though we have not been given a definite diagnosis, we do know that his heart and pace maker are functioning properly.  Dr Rauinkar has been checking on Brinkley daily and keeping a close watch on his heart.  He has been communicating with our team in Charleston as well.  At this point, the doctors are leaning toward aspiration and/or possibly a virus.  Friday night Brinkley got choked up on some formula, so it is very likely that he did aspirate.  We will continue to stay on the monitors until this issue resolves itself.  

I must say that if we have to be in the hospital it is a relief to be in Greenville.  Our family can have a somewhat normal life.  We love the staff at GHS and continue to meet wonderful people there.  Let's hope that we don't drag this stay out too long.  Mommy needs her little guy home!  

Hindsight

In my day turning fifteen generally meant getting a driving permit and a car.  Unlike my friends, I turned fifteen and got my first pair of glasses and a permit that said the glasses were a required accessory.  As I am sure you are aware, the intent of glasses is to help those who are visually impaired bring their vision as close to 20/20 as possible.  Much like glasses help you to see more clearly, the old saying is also true; Hindsight is 20/20.  

As we stepped back into the halls of the hospital this weekend I was reminded of all the things that have come together to bring us to this point in life.  A lot of those things didn't make sense at the time.  Many of the foster parent training sessions that we sat through were for services Reese didn't need and probably won't ever need.  Brinkley, however, will need most of those services and I would not have been aware of them or know how to go about getting them without those sessions.  All of the waiting and dealing with government agencies to complete our adoption was preparing us for all the red tape that we have to work through to get the government assistance Brinkley needs.  

Building a support network of adoptive families prepared me for seeking out a support network of special needs families.  Getting out of debt last spring has helped us stay afloat with the medical bills we have incurred.  (The before insurance portion is quickly reaching the million dollar mark.)   The Clary family was brought into our lives and we are blessed to have their wisdom and experience with their own medically complex child to help us navigate this journey.  

The longer we walk this journey the more things we see that have been preparing us.  Each day little things happen that are just what I need for later that day or week.  I would like to encourage you ladies out there to check out this resource: 

This was the best $5 I have spent in a while.  These 10 minute "talks" have been right on target for me lately.  (I plan to look for full length copies of some of these talks.)  They are perfect for taking advantage of those few minutes of quiet time in the car after you drop the kids off at school.  I bought this before Christmas, but in all of our craziness I just found it and pulled it out a couple of weeks ago.  It couldn't have been more timely.  Several of these have really challenged me.  That challenge was just what I needed at this time in my life.  

This period is tough right now, I'm not going to lie.  It is exciting though.  It probably sounds crazy, but it's exciting to think what our current circumstances may be preparing us for.  It's my hope that soon I'll look back and see that we have been able to help another family on this journey.  After all, hindsight is 20/20.  

Just a little magic

On our last visit here we spent quite a bit of time with Dr Elhoff, one of the pediatric fellows.  He was the doctor that we saw the most often (and Bryan's new BFF).  Last night was the first time that Dr Elhoff has been on duty this go around and we spent sometime talking with him about Brinkley's oxygen situation.  He decided to have the nurse turn the oxygen off and see how things went.  

This morning as we were coming into the parking deck I joked with Bryan that maybe Dr Elhoff worked his magic and Brinkley would be off the O2.  I wasn't really sure what to think when I walked into B's room and the bed was empty.  For a moment I almost panicked.  I went to the nurse's station and asked where my baby was.  Well, there he was in a swing (big shock) by the nurses.  He had decided to put on his charm and flirt his way to the prime spot.  A few minutes later his nurse brought him back and there was NO O2 on his face!  Then her face lit up and she told me that the discharge papers had been signed!  WOOHOO!  

I am writing this while sitting in the floor beside the little guys car seat.  We are trying this car seat test one more time and praying that he passes finally!  We are also waiting for the pace maker nurse to come and educate us and then we can go home!  

We have a few things that we have to take care of here in town before we can leave, but we should be back in the upstate tonight!  Reese will be so glad to have us home.   I guess Brinkley just needed a little quality time with Dr Elhoff before he was ready to come home.  We just may have to have the boys send him a thank you note for working his magic.

Working hard on his car seat test

Things are looking up

Mr Smiley has had a great day.  Both of his chest tubes were removed today!  Generally patients are held overnight to be observed once these tubes come out.  Dr Atz told us that we would probably be released tomorrow.  That was awesome news.  We don't know what to think about a one week hospital stay.  

Unfortunately, Brinkley has had issues with his O2 levels today and has had to go back on oxygen.  We are not sure how this will affect our chances of being discharged.  The doctors will let us know the plan tomorrow during rounds.  Regardless of what is decided on that we are supposed to be meeting with a pacemaker nurse tomorrow.  This will be one more thing for me to learn to manage.  It's a good thing I'm not working anymore.  I've got plenty to keep me busy!

I made a call to Dr Raunikar this afternoon (15 minutes too late).  Hopefully if the O2 is still a problem he can have us transferred back to Greenville to be treated and monitored there.  Dr Raunikar is on duty at the hospital this week and next, so he would be able to care for Brinkley himself.  I will follow up on this again in the morning.  Our prayer is that the problem will take care of itself, but if not it would be much easier on us and Reese to manage it from home.  

With this potentially being the last night that we have built in childcare we decided to take advantage of it and have a date night.  We had a nice dinner and followed it with a trip to KK!  I am not really a doughnut fan, but every once in a while I get Krispy Kreme on my mind and I need a doughnut.  This has been one of those weeks.  Doughnuts on the brain!  It was fun and we enjoyed the doughnuts.  The nurses did too since we brought some back to them.

Brink is a little too small for doughnuts, but we couldn't leave him out of the fun...

I know people probably think that we are awful not staying at the hospital all the time.  One thing that we have learned over our 13 weeks of hospital stays is that you have to take a break.  You have to have some fun when you can.  The hospital is so serious and it will consume you if you let it.  It is important to take some time for yourself and not lose sight of who you are.  I love my baby and I want the best for him.  What is best for him is to have parents who are well rested and clear headed.  Tonight a little fun with doughnuts was just what we needed to clear our heads!

Someone feels better!

This is how Brinkley greeted me and the medical team yesterday

I do believe that the little guy is feeling better!

Moving on up and some unexpected blessings

As I look back over the last week I can't help but see quite a few ways the Lord has blessed us.  This twist in our journey was completely unexpected, but none the less blessed.  From dealing with car troubles and unfruitful doctor appointments that have to be rescheduled to appointments with nurses that turned into doctor visits that landed us back here in Charleston.  Things have been a bit crazy, but I always look forward to seeing how God shows Himself through the craziness.

Yesterday we woke up and made arrangements to get Bryan a rental to go home for a few days.  We were a little hesitant about renting the car because we really didn't need to spend that money.  Soon after reserving the car Bryan got a call from a friend who was in town for a sales call and wanted to have lunch with us.  He was headed back home and let Bryan ride home with him.  We also found out that another friend is coming to Charleston tomorrow for business and Bryan is riding back with him.  What a huge blessing!  Bryan got some guy time in and we saved the money we would have spent.

Yesterday Brinkley was able to have his RA line removed.  That was one step closer to moving upstairs and... it meant I GOT TO HOLD HIM!  I had not been able to hold my baby since Thursday morning.  Last night the doctors stopped the milrinone drip.  That brings the total of drips to four and meant that he was ready to move upstairs.  

With Bryan being home for a couple of days our sweet niece, Jordan, and one of her roommates  Chelsea, came and kept me company last night.   Bryan is spending some needed quality time with Reese and taking care of some things at church.  This morning was a little rough for them and Reese and Bryan both parted at school with tears in their eyes.  Please pray for our buddy.  He is having such a hard time and we are trying everything that we know to help him.  I can't imagine how he must feel and what is going on inside of him.  

On the flip side of that, Brinkley had a great morning!  I arrived at the hospital and he was all smiles.  I think he knew what was coming!  He had a great night and took a bottle well at 9 am.  The doctors pulled the last line that was going into his groin and we were off to 8D!  YEAH!!!!  One step closer to home.  His drainage still looks good and Dr Z said that one of the chest tubes will probably be pulled today.  No word on the other tube yet, but the drainage on it looks good as well.  

My little wonder is making progress and moving his way closer to home!

Making Progress

Last night when we arrived at the hospital to say goodnight to Brinkley we noticed that several nurses were in his room.  It startled me a little so I hurried into his room.  The nurses were all smiling and laughing and said that they had all come to admire the baby. Whew!  That was an intimidating sight but I was glad to hear that they were simply realizing what we already know; we have a super cute kid!

When we left they were checking some blood work every few hours to determine if he was ready to come off the breathing machine.  His numbers looked good all night and he continued to wet as they had hoped.  This morning his numbers were still good and his chest x-ray had cleared up.  Before we left for lunch his breathing tube was removed!  YEAH!  We also noticed that he only has six drips now and after removing the tube they started giving him pedialyte through his g-tube in preparation to start feedings.  

Tonight when we went to say goodnight he had been changed over to formula from the pedialyte.  If all goes well he should be up to full feeds tomorrow afternoon or evening.  Hopefully we will be able to give him a bottle as he was starving this evening and desperately searching for his bottle.  You could hear him smacking his lips.  It was pitiful!  

His drainage is still being monitored and will continue to be.  The first 48 hours after formula is started will be crucial in determining if the chylus drainage has returned.  Please pray that we avoid this!  To this point he has had normal drainage amounts and it has progressed the way the team wants it to.  

Brinkley's RA line is now the main factor keeping us in PCICU.  He will probably keep this line 24-48 more hours and then we can consider moving upstairs to 8D.  This is the Cardiology unit in Children's Hospital and our final stop before heading home.   

Please pray for Bryan and I as we figure out our schedule for the coming week.  Bryan will most likely be going home for a few days to spend time with Reese.  We will continue to spend time at the hospital with Brinkley also.  Leaving is becoming more difficult though. He is very alert now and aware of when we come and go.  Today when he saw us he cried  to be held and he started crying when we were trying to leave tonight.  It is so much easier to leave when he is sleeping.  It is heart breaking to have to leave him upset like that.  

We are still a few days out from being able to hold him and that is difficult for us all.  It is especially difficult when he makes that sad face and starts to cry because he wants his Mommy.  I have to remind myself that it is for his safety and benefit that we don't handle him and that he won't remember any of this.  I'm grateful that we can see his sweet little face now and to see him playing with his blanket and animal.  I look forward to getting a smile out of him soon!

He's having a talk with Jordan.

Post Surgery Day 2

We were greeted this morning by nurse Liz.  She was one of Brinkley's nurses last time and we really liked her so it was great to see her taking care of him again.  Liz said that Brinkley had a good night, but that there was a change of plans on the breathing tube.  There is some fluid on his lungs so they are holding off on removing the tube.  It may be able to come out tomorrow.  We knew when we arrived that he possibly had a touch of pneumonia and that is apparently the culprit of the fluid.  He has been treated with an antibiotic and with diuretics to try to help flush the fluid out.

The team is pleased with the amount that he is urinating which shows that the diuretics are working as hoped.  His drainage from his chest tubes is still at an average level so that is positive as well.  He is down to seven drips with one of those being IV fluids.  He will not begin feedings until the breathing tubes are removed.  Our prayer is still that we will avoid the chylus drainage once he begins feeding.  

On our last go around Brinkley made it very clear that he works on his own time frame and each of the doctors have reminded us that he is in charge.  Well little buddy, we hope you are in a bigger hurry to get home this time!

Post Surgery Day 1

I am glad to say that today has been UNEVENTFUL!  Yeah!  So far so good.  

Last night Brinkley had a fever but this is not uncommon after surgery.  It lingered a little today and was normal tonight when we left the hospital.  His drainage has been normal so far and they were working him off of the breathing machine today.  C Pap trials should be starting about now and these are used to determine if he is ready for the tube to be removed.  The removal of the breathing tube is the first of a few steps toward getting back to 8D and 8D is one step closer to home.  

It was encouraging to see familiar faces in the unit today.  Cheryl was one of Brinkley's frequent nurses last time and she came to visit us today as did Nurse Shea who had also taken up with Brinkley. Nurse Laura was his girlfriend during his last stay (she hooked him up with the snazzy Santa jammies) and she checked on him yesterday.  It was also nice to see doctors and residents that we had gotten comfortable with in December.  It has been surprising to see how many of the staff members remember you and remember about you.  Cheryl even asked us how the move into our new church building went.  

Brinkley's nurse tonight is Katie and we have mutual friends.  They assure us that she is wonderful!  Little things like this bring a sense a comfort in the midst of the chaos.  I think they are God's way of reminding us that He didn't bring us here to leave us alone.  He cares about the details and is orchestrating every step of this journey.

We look forward to tomorrow and pray that he will be tube free.  Join us in praying that there will be no lung issues and that the drainage will stay under control.  Right now he has 10 different drips going and we hope to start seeing those reduced tomorrow. If all goes well we are looking at four to five more days.  Our God is able!

Not again!

To say that the last two days have been a whirlwind would be an understatement.  After three ambulance rides and an airplane (sound familiar?), this update comes to you from Charleston.   Yes, we are back in Charleston and I am working on three hours of sleep for the last 48 hours.  Mix that in with not sleeping Monday night due to Reese's stomach virus and you have one exhausted Momma!  

The story began in an all too familiar way...  Wednesday afternoon at 12:30 we left home to go to two routinely scheduled doctor appointments.  One was for a vaccine and the other for a follow up echo.  To make a long story short there was an issue getting a good O2 reading at the Pulmonologist's office where we were getting the vaccine.  The Dr was concerned so knowing that we were going to Cardiology after our visit he called the Cardiologist on call and asked him to take a look at Brinkley.  They too had a hard time getting a good O2 reading and we proceeded with the echo.  The echo was concerning so we got an EKG (we just did all of this two weeks ago).  The EKG was concerning and we were sent back to PICU at GHS in heart block.  

We arrived at GHS about 4pm and Dr Raunikar arrived soon after to prepare us to be sent back to Charleston.  We expected to be airlifted around 8pm and then it was pushed to midnight and then 3am.  We finally started moving around 3:30am and Dr Raunikar stayed with me the whole time.  Have I mentioned that we have the GREATEST Cardiologist EVER!  We are beyond blessed!  Brinkley and I flew out around 4am and arrived at MUSC at 5:45am.  A friend picked me up about 6 am and took me to her house to sleep for a couple of hours.  

Around 9am the nurse called and I was up and headed back to the hospital.  I met with Dr Kavarana and got the plan for the procedure.  After scans and tests he had decided that Brinkley's Pulmonary Artery needed to be repaired again as it had narrowed even more since the first surgery.  This would be followed by placing the pacemaker.  Due to the scar tissue from the surgery in December the procedure took significantly longer than expected.  

Brinkley was taken back for surgery about 1 pm and Dr K started the procedure around 2pm.  The procedure was complete about 8:30 pm and we saw Brinkley about 9 pm.  He is still heavily sedated and will remain that way at least over night.  Dr K said that this procedure was more difficult than the first due to the scar tissue.  We are now back to watching drainage, so please pray that he will drain quickly and that there will be no chlyus drainage this time around.  

As you can imagine, this is not how we intended to spend Valentine's Day.  As my sweet friend pointed out to me this morning we can always remember that our sweet Brinkley got his broken heart mended on Valentine's Day.  My only request is that we don't spend anymore holidays at MUSC!

Color Blind

Basketball season is officially over for Reese.  (Thank Goodness!)  I think we will be sticking with individual sports for a while.  Mr Enthusiastic needs a little more experience with working in groups before we tackle another team sport.  That's not necessarily a bad thing since he loves golf and swimming, but I digress.  

As any parent of a future Sports Center star knows, the end of a sports season means party time!  Party time was last Monday night and of course it came with lots of moms taking pictures and, what every kid waits for, a trophy!  Reese was no exception.  He asked numerous times when they would get their trophies.  He kept creeping over to the boxes hoping to get a glimpse of that majestic prize.  

After all the festivities were over Reese looked at the coach's wife and asked if she was Jonathan's mom.  This seems like a simple enough question, but it was one that nearly brought tears to my eyes.  You see, both the coach and his wife are Caucasian.  Jonathan is African American as are his parents and older brother.  Until this moment I didn't know that Reese realized that our family doesn't match.   Apparently he does and doesn't think much of it.  

We often talk to Reese about being adopted and we tell him characteristics that he has that "match" our family.  His brown hair matches both Mom and Dad and nearly everyone else in our families.  His brown eyes match Daddy and his curls are kind of like Mommy's.  He knows that God created him and gave him to us and that we love him no matter what.  One of my concerns in adopting a child that doesn't "look" like us was that he would feel like an outsider.  I know that those days may come as he gets older, but for now he appears to be color blind and I couldn't be prouder of him!  

It's official

Last week was an official kind of week for the Holders and I've got plenty of pictures to prove it!

We'll start with Monday.  Basketball season officially came to an end and Reese got his coveted trophy.

Reese and Coach Les with that oh so precious trophy!

He was so proud.  He wanted to share his trophy with Brinkley.

Brinkley saw Dr Gates' nurses and got his button changed out to a smaller, more comfortable one.  

Tuesday Brinkley discovered how to handle his orange ball on his own.  I was so proud to look over from my desk and see him holding it and shaking it.  

Wednesday Brinkley was officially 5 months old!   To celebrate we broke out the 3 months clothes.  He has officially gotten too long for his newborn clothes.

I couldn't resist this silly little face.

The first 3 month outfit.

Thursday we officially "ran out" of the nasty Enfaport and Brinkley couldn't be happier!

That's the face of a boy that just got to eat something he likes for the first time in 10 weeks.

Friday was Brinkley's first day with Ahead Start, his Early Intervention Specialists.  He worked with Ms Rachaelle and looks forward to her coming back this week for a massage.  Friday was a big day for Mommy too.  It was my first official day as a stay at home mom.  After talking about it and praying about it, Bryan and I decided that we will make the needed financial changes for me to stay home.  It was becoming more and more obvious that there is no way that I can take care of everything needed with our boys and still have enough hours to work out of the house.  

This was a tough decision for me.  I have had a steady job (often multiple jobs) since I was 14 years old.  I enjoy working and it gives me an outlet.  It is my hope that as things calm down a little with Brinkley that I will be able to spend some time meeting and getting to know moms of other special needs kids and do some volunteer work.  

With that in mind, this is not the week that things are slowing down.  Between my two boys this week we have nine appointments.  Yes, nine!  Thankfully two of those are home visits so we don't have to go out.  There is no way that I could have been at work long enough this week to get anything done.  

Currently I am being paged by one grumpy little five month old.  Now that he is on formula that he likes he can't seem to get enough!  Today that is a GREAT feeling!

The countdown is on

6, 5, 4, 3, 2, and now 1!  We are down to our last week on this TERRIBLE formula!  Thank you Jesus!  Brinkley was taking full feeds by mouth when we arrived in Charleston (as much as 72 mls).  He has reverted back to only 10 to 20 mls by mouth and the last couple of days he has pretty much refused a bottle.  This is incredibly FRUSTRATING!  

Thursday when we saw Dr Raunikar he said that it would be ok if the formula didn't last until Saturday.  This Mommy's interpretation of that was, "do whatever you can to use it up before Saturday."  And, that is exactly what I have been doing!   I'm thinking we'll be done with it on Thursday.  

I talked with our Pediatrician today and she told me to put him back on his previous formula initially.   I am hoping that we will also be able to start adding some cereal in soon.  I feel like my baby is starving!  So, If you see a crazy woman dancing through town this weekend it's probably just me doing a happy dance.  I can't wait for this torture to be over so my baby can eat!