Monday, December 31, 2012

Not today :(

This morning I anxiously awaited the morning rounds.  When they finally made it to us around 11 am I expected the team to come in and tell me that we were going home.  Instead, they passed by me with no word and disappeared.  Radiology soon cam in to take a chest x ray.  A little later Dr Bradley came in to check his incision and said that it was healing well and Dr Bandisoe would be coming to talk to me about discharge.  This sounded promising to me!  

When Dr Bandisoe finally made her way back to us, she told me that Brinkley had not passed the car seat test and would have to return home in the car bed.  That stinks!  We really want to get him out of that thing.  It does not seem very secure to either of us.  As disappointing as that is, it will not keep us here and we'll take it.  However, the chest x ray will keep us here.  There was a little "schmuck", as Dr Bandisoe called it, on the left lung.  We will have to stay tonight and have another x ray tomorrow.  They are trying to make sure that the drainage has not started again.

So, Brinkley and I will ring in the New Year from his room at MUSC and pray that we will end the day celebrating in our home!

*Pray for Bryan and our dear friends who will be driving him back here tomorrow.  It is a little scary to think about them be on the road with all the folks who have been "enjoying" their new year.  

Sunday, December 30, 2012

Let's try this again...

It's back!

If you have been following our journey very long you may remember the excitement this car seat brought me in the NICU.  (You can read about it here.)  Well, that moment of excitement happened again today.  This morning Dr Bradley, the surgeon, came in and removed Brinkley's chest tube and the pacing wires that remained.  This was followed by an echo and an x ray.  These were to make sure that there was no bleeding around the heart and that the drainage had truly dried up.  The doctors were pleased with these.  

This left us with an IV, the monitoring wires (heart rate and oxygen meter), and his G-tube (feeding tube).  The monitoring wires will stay until we are ready to walk out the door and his feeding tube will remain.  If you are keeping score, that means that the IV is the only thing left tying him to the hospital.  

This afternoon, the IV was turned off!  Other than feeding times, he is no longer bound to his bed or even his room!  He has made incredible progress over the last few days.  After everything was removed the nurse told me that they were ready to do his car seat test.  (You may remember that Brinkley failed his test both times in NICU and we came home in a car bed. We are trying to go home from MUSC in a regular car seat.)  Just like in NICU, this is a sign that home is on the horizon!  

I have gotten mixed reviews from the team today as far as the exact date, but it is safe to safe that we should be discharged by Wednesday!   I am hoping that I will get a more definitive answer after rounds are made in the morning.  

Please pray specifically that he will pass the car seat test.  Today they attempted it twice and he was so close to passing.  They will try again over night or tomorrow, but he will have to pass it twice to go home in his regular seat.  Pray that my little procrastinator will try again and get it this time!  Here's to spending New Years in the upstate!

Saturday, December 29, 2012


Yesterday Brinkley was started on a medication called Octreotide.  The goal was for it to start to dry up the drainage from the lymphnodes.  We got mixed reviews on its effectiveness beforehand.  

As of right now it is working wonderfully.  Better than expected to be accurate!  If this continues,  his chest tube could be removed tomorrow.   He would stay on the meds another day and then we would have a day or two of observations before being discharged.  

If all goes as planned (we know Brinkley's opinion of our plans) we could possibly be discharged by mid week!  

Thursday, December 27, 2012

Four weeks later

We are now well into our 4th week in Charleston and the tiniest Mr Holder is still taking his sweet time.  Brinkley's chest tube continues to drain 18-25 ml's everyday.  Dr Kavarana said that 10 is our magic number.  Brinkley needs to drain 10 ml's or less for two days in a row for the chest tube to be removed.  

Yesterday Dr K told us that he wants to give Brinkley a few more days before considering any other actions.  There is a medication that we can try and if it is not effective there is a surgical procedure that we can consider.  Dr K is not a fan of the surgery as it only has a 50-60% success rate.  He doesn't want to put Brinkley through the stress of a surgery that may not actually help him.  

We have learned that Dr K is very meticulous and does not rush anything.  At times that seems like a blessing and a curse.  We are ready to be home!  Reese referred to our home as "our old house" this week.  The poor little guy is so confused!  It was great having him with us this week.  He and I are home in "our old house" for the night.  I am taking him to play therapy tomorrow and then heading back to Charleston.  Bryan will be here for church on Sunday and will be staying to take Reese to another appointment next week.  
The stress of our current lifestyle is wearing on all of us.  Reese is having issues with his skin, allergies, and behavior.  We are going to try to focus on him over the next few days to see if we can get all of these issues addressed.  

Reese is not a fan of the drive from Charleston to the upstate.  I tried to help him out and we took our midway bathroom break at Toys R Us in Columbia.  He saw the Chuck E Cheese close by and asked if we could go there.  I agreed that we could go to the CEC at home if he would be good for Mommy.  He was really good at TRU and then when we got home, so I held up my end of the deal.  

Chuck E Cheese was a success except for one little issue.  Somehow on the way there Reese got a mini Hershey bar and it is now all over his car seat and the upholstery of the rental car.  The upholstery is cream and did I mention in a RENTAL CAR!  Any suggestions of how to remove that by 5pm tomorrow (Friday) would be greatly appreciated!  

Tuesday, December 25, 2012

Merry Christmas!

Merry Christmas from the Holder's!  

Brinkley Claus

I had many grand plans for Christmas photos with my boys.  Have no doubt, I will get those pictures.  My boys won't know that Christmas is over when we finally make it home.  I will be that crazy lady sending Christmas cards out well after Christmas.  Like any new mom, I want to show off my handsome boys.  I even prepaid for my cards with the intent of getting the pictures that I wanted and then having the cards made.  

Well, those cards are still paid for and I am still going to make them.  People will have to understand and over look the fact that they don't arrive until well after New Years.  What the heck, we may start a new tradition and send out Valentine Cards instead of Christmas ones.  (At the rate we're going it'll be Valentine's before we get home.)

My neighbors are going to think we are crazy, but we are putting up our tree when we get home.  I am determined that my boys will have Christmas in our house in some shape, form, or fashion.  We've been in the hospital since December 3rd, so I did not have the chance to even attempt to pull out our Christmas decorations.  Thanks to our niece and some very special friends, both of our boys had Christmas trees, one at the hospital and one at the apartment.

I must be honest and say that this has been much harder than I thought it would be.  Not having my boys in the same place has been tough.  It was hard to leave Brinkley at the hospital alone last night.  It wasn't what I planned for my baby's first Christmas, but his sweet nurses helped Santa find his bed. (They even put his Santa suit on him before we got here!) He woke up to his gifts from Santa and later Reese helped him open his presents from us.  

Yesterday I went in the grocery store to get a few things and as I was leaving I saw a middle aged lady and a gentleman (maybe 30ish) with Downs walking through the parking lot.  Earlier in the day I had noticed a teenage boy with Downs a few rooms up from Brinkley.  After seeing these two men, I couldn't help but think of my Brinkley as he grows up.  

Our lives will never be the same.  Every child changes your life and family, but it seems that a special needs child takes that to a whole new level.  Those gentlemen were reminders to me of the joy and heartache that our future most likely holds.  In my mind they represented the fact that we are going to have ups and downs.  Like the young man here in the hospital, we will probably have our share of days with doctors, hospitals, and therapists.  Like the gentleman at the grocery store, we will likely have many more times where life seems normal and we are doing normal family things.  The toughest part was accepting that this is our new normal.  

Though that is a tough reality for me to accept, I also have to say how blessed I am.  Our sweet baby has turned on the charm since we have been here and he has started smiling a lot!  He has even attempted to giggle a few times.  People have been so good to us here.  The sweet ladies from Cross Bridge have been checking on us and visiting with us at the hospital.  They even brought us a traditional Christmas dinner last night. It made us feel a little more at home as we sat down to enjoy it at lunch time today.  As I was sitting here writing this, a gentleman came in to tell me that a group had brought dinner to the waiting room down the hall.  I just went in there to find more traditional Christmas food including sweet potatoes like my aunt makes me.  I felt so stupid, but I broke down in tears as the lady put it on my plate.  I thanked her and she said she understood, she was here with her child two years ago on Christmas.  

I think the Lord just used those sweet potatoes to confirm something in my heart.  The last few days I have been feeling like there is something that the Lord would have us do for others facing this same situation.  Our family often talks about doing something for Christmas rather than putting so much focus on our gifts.  A simple as it is, those sweet potatoes may have just clearly shown me what we are going to do next year.  Who better to serve these families than someone who has walked this road also.  I'm pretty certain that you will find the Holder's serving Christmas dinner at our Children's Hospital next year.  

Saturday, December 22, 2012

He doesn't look like he has Downs

For many people in my generation this may be the face of Down Syndrome to you: 

Chris Burke, a teenager with Down Syndrome, was one of the stars of the late 80's TV show Life Goes On.  This was probably the only experience that a lot of people had with Down Syndrome.  I loved this show and never would have imagined that it could be a foreshadowing as to what my life may be like in the future.  

My cousins and I were very blessed to have grown up participating in activities at our local YMCA with a young man named Brad.  Brad was about our same age and had Down Syndrome.  He looked different from Chris Burke and he had different levels of ability than Chris.  I don't remember Brad's last name and I am not sure where he is now, but I am so grateful that we had the privilege of knowing him.  Again, I would have never imagined what his presence in my life was preparing me for.  

Over the last few months we have met and come into contact with many children (of all ages) with Down Syndrome.  In some ways these children all look similar, but in many ways the all look very different.  My goal in writing this is two fold.  First, I want to be able to share with my boys the journey that we have been through with them.  Secondly, I want to educate others about the things that make our family unique.  

Today, I hope to educate you.  When we share with people that Brinkley has Down Syndrome we tend to hear, "He doesn't look like he has Downs."  Honestly, there are times that I look at him and I don't think he looks different.  There are other times that the shape of his beautiful little eyes scream at me that he has Downs.  One of the things that I have learned is that children with Downs first and foremost look like their families.  There is no denying that this little round face is very much like his Daddy's.

There are physical characteristics that are common with Downs: slant of eyes, small features, placement and shape of ears, and an often protruding tongue.  Children can have all or any combination of these (along with a few others) just like the children in your family may have any combination of the physical characteristics that are common in your family.  I have not been able to find any research that supports the theory that the less prominent the features the less severe the case, though this is a popular line of thought.  

Like Autism, children with Downs can fall anywhere on a spectrum of severity.  Nearly all children with Downs have some level of cognitive disability, but it varies from child to child.  Many children with Downs are mainstreamed in school and only need extra help in one or two areas of study.  Children with Downs can (and do) accomplish the same things as children without Downs, they just do it at their own (often slower) pace.  

Since getting Brinkley's diagnosis we have become so much more aware of how many people around us are living with Downs.  It is amazing how much has been learned about Downs in just the last twelve years.  Children are living longer and healthier lives.  In my parents generation it was common for these children to be institutionalized because of how little we understood about helping and teaching them.  Today, with therapy, our children do the same things as their peers.  

I would encourage you to check out the photo gallery linked below to see the many faces of Downs.  You will see that they do share some common things, but they are all very different, and all VERY beautiful!

Friday, December 21, 2012

Christmas Time is Here

Brinkley is continuing to make slow progress and we are taking care of a lot of little things such as formula issues and scheduling a car seat test.  In the midst of all the things going on at the hospital, it was nice to have some time with friends this week.  A good friend was in town for business and we met up with him for dinner.  One of our former students now lives here and we enjoyed meeting her for lunch and catching up. 

This morning I made a new friend.  Ashley stopped by to introduce her self and share her story with me.  She is also from the upstate and we have mutual friends.  She was here for her son to have a procedure today and took some time out to encourage me and just be a friend.  What a blessing that is!  No one can truly understand this road unless you have walked it yourself. 

We closed out the day with some special visitors.  Bryan's sisters and our nieces arrived to pick him up and bring him home for the weekend.  It was nice to see them for the few moments that they got to visit with us.   Soon after some of our dearest friends stopped by to say hello as they arrived in town to have Christmas with their daughter who lives here.  

Bryan went home to be at the church's Christmas service and to bring Reese back for Christmas.  Yes, we are planning for a nice Charleston Christmas.  It will be fun to be low key with our boys, but it does not feel like Christmas.  Today was the first day that it was even remotely cool.  I just can't get in the mindset that it is Christmas when people (including Bryan) are out in shorts and t shirts.  This weather is crazy!  Today it was around 50, but that is the first time it has been less than 70 since we have been here.  Maybe I should put up a palm tree instead of a fir tree.  It would certainly seem more appropriate for the weather!

Thursday, December 20, 2012

"Mommy, you don't cry..."

In college I was introduced to the Myers Briggs personality test.  After Bryan and I were married we participated in a marriage class that used our Myers Briggs profiles.  I am an ISTJ meaning that I am a thinker rather than a feeler.  I internalize things and think them through rather than react out of feeling or emotion.  Generally, I am not an emotional person.  I rarely cry which is a pretty big joke in my husband's family since they are all criers.  

Apparently Reese has never seen (or noticed) me cry.  Today (Sunday) was a tough day.  The stress got to me and I broke down.  I'll spare you the details.  I have tried to keep things as normal and stress free as possible for Reese.  That, however, has proven to be near impossible.  He is a smart kid and picks up on much more than we give him credit for.  As I stood in the bedroom sobbing, Reese (as is typical with his precious spirit) wanted to console me.  He kept saying he was sorry for hurting my feelings.  I tried to explain to him that he had not hurt my feelings, but that Mommy and Daddy are sad and ready to be home too.  I told him that sometimes things are hard for Mommy and Daddy too and that makes us cry.   

Soon after this we started outside to get in the car.  Reese and I were outside for a few minutes before Bryan came out.  As I was putting him in his car seat he said, "Mommy, you don't cry.  You are a grown up and grown ups don't cry."  My heart sank a little bit.  I want my son to know that women can be strong.  I want him to learn to love and respect women.  I want him to know that men can be strong and caring.  I want him to strive to be a strong, caring, and respectable man.  I want him surround himself with strong, caring, and respectable people.  Where I missed the mark though is teaching him that being strong also means being real.  

Strong people love and with love comes hurt.  No one can handle everything on their own.  It takes a strong person to be able to cry and deal with the hurt and frustration that comes with this life.  We weren't intended to live this life alone.  God made it clear that he created Eve to give Adam a helper (Genesis 2).  He needed someone to share this life with.  The ups and the downs of life, the good and the bad.  God also made it clear that no one is expected to handle everything thrown at them with no emotion.  Even Jesus, our ultimate example, had his moments.  When he saw the state that his dear friend Lazarus was in he cried(John 11).  He even asked his father to intervene in His time of struggle and take the struggle from Him (Matthew 26).  

If my goal is to teach my boys to be like Jesus, then have I really taught them well?  Jesus himself had moments where he showed strength in weakness, so to speak.  With that in mind I need to be real with Reese.  He needs to see that Mommy and Daddy sometimes need to let it out.  We need to allow ourselves to feel and to hurt, openly.  We need to be open about needing strength from our Father to get through the tough things in this life.    We need to cry and we need to talk about why we are crying and how our Lord hears our cries and cares for us.  

I am amazed sometimes at how clueless I really am with the whole parenting thing.  I am even more amazed at how much I learn from my 4 year old.  Personality profile or not, it is my job to teach children to be real and being real means that grown ups, even this Mommy, cry sometimes.  

December 19th

Yesterday was a day of huge significance for our family.  About ten years ago we made the decision to answer the call laid out in James 1:27.  Then in 2007 we started the process of adoption.  I can not even begin to describe to you the feeling I got when the phone rang one afternoon in December of 2008 and the social worker on the other end of the line said that we had been chosen for a five month old boy.  An appointment was made for us to come to social services and be presented with all of his information.  After that appointment we prayed and sought the council of some trusted medical professionals and came back the next day to let them know that this was our son!  

The morning of Friday, December 19, 2008 we met a social worker at the Department of Social Services and she took us to the far other side of the county to the foster home where our baby was living.  As we pulled into the drive way the foster mom came out onto the porch holding a baby.  My heart dropped when the case worker told us that the beautiful baby was ours!  We went into the house, met the foster mom and her children, and held our son for the very first time.  Monday, December 22nd our dream became a reality when that same social worker arrived at our house with that beautiful baby to officially bring him home! 

A long three year process began to make him legally ours, but we knew the moment we saw him on December 19th that he was ours.  

When we arrived at the hospital yesterday morning to see that Brinkley's ART line had been pulled we heard those beautiful words again.  "Would you like to hold your baby?"  I couldn't help but remember that sweet moment four years ago to the day when Reese was placed in my arms for the first time when I held Brinkley for the first time since his surgery (nearly two weeks ago).  I must admit I was a little nervous with his chest tubes, but I was extra careful and gave him gentle cuddles that we had both missed so desperately.  

Earlier in the year, a former student of ours and one of his friends had been arrested here in Charleston for attempting to climb the Ravenel Bridge (formerly the Cooper River Bridge).  Facebook and Twitter were full of pleas and campaigns to Free Choco.  We had jokingly started our own campaign to Free Brinkley.  Free him from the PCICU.  The nurses and doctors have been WONDERFUL in there, but we knew the sooner we moved out of ICU the sooner we go home.

Well, our efforts came to fruition yesterday afternoon.  Around 3pm Brinkley was moved out of PCICU to 8D.  (8D is the Pediatric Cardiac unit of the Children's Hospital.)   We followed the team from PCICU to take him to his new room and then we promptly began decorating his room for Christmas.  In our last visit with Dr Kavarana (the surgeon) yesterday he said that Brinkley's chest tubes would probably need to stay 4-5 more days.  Yes, you did the math right.  That means that our projected discharge date would be Christmas Eve or Christmas Day.  Realistically, we don't know how much longer we will be here.   Dr Graham, the Cardiologist, said it best yesterday when he said, "Brinkley has made it clear that he is in charge."  It is amazing how much a little 8lb 7oz baby can dictate.   

It may be kind of nice to have a low key, stress free Christmas here in Charleston.  The Bryant's have graciously given us their guest apartment so that we can spread out and enjoy the time with our boys.  As is true for most families, holidays are hectic and quite honestly frustrating for us.  We have so many places to be and everyone wants their share of our time.  We never get to enjoy each other and what the holidays are really about for trying to get from one family member's house to the next.  We are looking forward to celebrating with our families next weekend when things can be more relaxed and everyone can enjoy it a little more.  Especially Brinkley with his new happy, healthy heart!

Wednesday, December 19, 2012

Catching up

As you can imagine, things are a little hectic for us.  The last few days have had plenty of ups and downs.  Sunday seemed to be a positive day and we were hopeful for good things to happen on Monday.  

Sunday afternoon we took Reese the Aquarium.  We asked the Guest Services folks at the hospital if they could help us get discounted passes and they gladly made arrangements for us.  To our surprise, when we arrived we found out that the passes were free.  That was a huge blessing!  Reese had a great time.  Later in the evening we were in the car and he said, "Daddy, thank you for taking me to the 'quarium.  It was awesome!"  (His teacher sent me an email last night and said that he talked about it at school also.)  It was nice to be able to spend some fun time with him in the midst of all the chaos.  

Monday, however, was not so pleasant.  We got up and packed Reese up.  Bryan took him to meet Jordan and sent them on their way back to the upstate.  The nurses prepared us and Brinkley for his RA line to be removed.  This was one of the last ones standing in our way to being able to hold him.  They got everything prepared and asked us to leave.  We went across the street to a cafe for lunch.  As soon as we sat down I realized I had missed three calls in a row (12:07, 12:08, and 12:09) from Jordan.  I called her back to hear Reese answer and let me know that he is not a fan of the long ride between Charleston and the Upstate.  "Mommy, I don't want to watch tv and I don't know what to do."  Apparently the DVD player had lost his attention.  I talked to him for a while and tried to console him only to be interrupted by a call from the hospital.  

Brinkley's nurse was calling to let us know that they had to change the plan.  Rather than remove the line, they had to replace the chest tube that had come out over the weekend and leave the line in place.  His lungs had to be drained again before they could attempt to remove the line.  

That night he started running a fever and his white blood cell count was highly elevated.    Trying to cough up the junk in his lungs was extremely painful since his breast bone is still healing from the surgery.    He was miserable and nothing we did seemed to console him.
All I wanted to do was snuggle him and let him know that it would be better soon.  I managed to maneuver myself to get my arm under his neck as if I was holding him and get half way up on the bed to be close to him.  I am sure this looked quite awkward, but you gotta do what you gotta do.  When he got quiet for a moment we rushed out before he could get stirred up again.

Yesterday he was able to get the RA line removed and while they were working they restitched one of his chest tubes.  So then we were waiting on the ART line to be removed from his groin so that we could hold him.  The nurse told us that they planned to pull it that evening before the shift changed.  Five pm rolled around and she went to get permission to pull it.  The Fellow on call told her to hold off because they wanted to use this line for some lab work during the night shift.   

We came back after dinner and the shift change and Dr McHugh, the Fellow, apologized for teasing us so much and explained the plan.  She assured us that it would come out the next day and we should be ready to move when a bed came available upstairs. She also talked to us about his fever and how they were following that.  She was so positive and told us how wonderfully he had progressed the last few days.   Brinkley was full of smiles and we enjoyed loving on him before we went to settle in to our new location for the remainder of our stay.  

Gladly, we got off that roller coaster on a high after seeing this:

Technical Difficulties

There have been a lot of ups and downs over the last couple of days that I want to share.   However,  currently we are having trouble getting access to the internet.   Hopefully I will be able to update from the hospital later today.  Please stay tuned!

Sunday, December 16, 2012

A little excitement

Brinkley's nurse met me at the door of the PCICU this morning.  She couldn't wait for me to see the outfit that she had put on him.  (He has not worn clothes since Thursday the 6th.)  I scrubbed in and walked over to his bed to find this:

He looked very cute in the Christmas PJ's that she picked out for him.  She told me that one of the chest tubes came out over night.  It was insinuated that he may have played a part in the removal of that tube.  (He is perfecting his lasso skills.)  She anticipates that the external pacemaker lines will be removed tomorrow when the surgeon returns from his vacation.  Those lines as well as the line going into his groin have to be removed before we can handle him or move out of ICU.   His lung x rays continue to improve and he has a productive cough that is helping to break up the junk in his lungs.  He should move upstairs to a private room tomorrow or Tuesday. 

It is an understatement to say that we were excited to hear that we are so close to moving on up!  

Saturday, December 15, 2012

Now it's Reese's turn

I apologize that this update is not very eloquent.  There is not a lot to report about Brinkley.  His lung x ray is continuing to improve a tiny bit each day.  Other than that, there isn't really any change.  We have seen several of the medicines and drips disappear.  He only has three lines connected as of tonight.  He has been much more alert since removing the breathing tube yesterday.  Bryan got a smile from him this evening.  This is the first time he has smiled at Bryan.  

Most of our action today came from Reese.  He was up crying most of the night with his ear hurting.  We took him to urgent care this morning to confirm that he has an ear infection and get him started on an antibiotic.  This is his 4th ear infection since the end of September.  Yes, I fully expect to be talking to our pediatrician about tubes when we return to the upstate.  September was the first one he has ever had and now we can't seem to shake them.  

The urgent care doctor seemed to agree with me in thinking that his allergies may be the underlying issue.  A few months ago we changed allergists because the former one didn't seem to want to cooperate with me.  I will be the first to admit that I am not a trained medical professional, but I am his mother and I have good instincts.  Brinkley's doctors keep telling me to trust my instincts, but Reese's allergist apparently thinks I have none and refused to do the things I was asking her to do.  I called the new doctor earlier this week and had no problem getting an appointment to do exactly what I was asking.  

I am hoping that we will be able to get some answers to his skin issues, the constant nasal issues, and the reoccurring ear infections.  All these things aggravate him and at times he is miserable.  It breaks my heart that I can't do anything that seems to help.  I am hoping that we don't have to go back to the strict diet that he had been on before, but I have a feeling that may be the direction that we are headed in.  

Hopefully the surprise we have in store for him tomorrow will make him feel better.  The great folks at MUSC made arrangements for us to be able to take him to the Aquarium tomorrow.  He is going to LOVE it!  

Friday, December 14, 2012

Charleston... we have a procrastinator

I'm a planner.  I don't like waiting around until the last minute.  Structure and routine are my friends, my best friends!  I like to have a plan and stick to it.  That is one of the many reasons that this journey has been difficult for me.  Brinkley obviously has no attachment to structure or my plans.  He has made this perfectly clear in every way expect his feeding schedule.  That he insists on sticking to.  

I shouldn't be surprised about this "attitude" of his.  His Daddy is certainly not a planner.  Routine and structure make him a little crazy.  Like Brinkley, he is quite serious about eating routinely, but that is where the routine ends.  

Mr Brinkley has earned many "badges" in his short three months of life.  He is a strong little fella.  Today he added a new badge to his collection.  The Procrastination Badge.  

When I left the hospital last night the staff was satisfied with his pacing at 98.  Ideally, they wanted him to be in the 130-140 range.  However, he was able to maintain is blood pressure with that pace so we were going to go with it.  This morning I arrived at the hospital around 8 am and his pace was 125 with great blood pressure and oxygen numbers. I told someone today that he hit a grand slam in the bottom on the 9th.  

This was further confirmation that no pace maker was needed.  The lungs are continuing to clear up and we were able to have the breathing tube removed today!  
Look at that sweet face!
We still have many steps to take before we can talk about going home, but we are making progress.  They plan to remove the external pace maker sometime this weekend and then I can possibly hold him.  He may be able to have the chest tubes removed this weekend also.  The breathing treatments will continue until the lungs clear up and the nasal cannula will stay as it is basically serving as a humidifier.  They are aggressively treating him with two antibiotics for some bacteria that was found in the lungs.  His cough sounds pitiful, but I am so glad to be able to hear him for the first time in a week.

Though I get terribly frustrated with procrastinators, I'll take it!  Improvement is better late than never.  

*As if Brinkley's surprise wasn't enough to warm this Mommy's heart today, look what greeted me at lunch time:

Thursday, December 13, 2012

CHD Tango

Todd, a parent of another child with Tetraology of Fallot, called it the CHD (congenital heart defect) Tango.  The two steps forward and three steps back involved in this process are inevitable.  Yesterday I purposely avoiding sharing the biggest blow to our day.  We wanted to know for certain what we were dealing with before we shared any information.  

We were greeted with not only the news of lung issues and the need for another chest tube, but we were told that Brinkley would require a pace maker.  Another surgery and more time under anesthesia and pain meds was the last thing we wanted to hear.  We wanted to hear that the breathing tube was coming out and we were making progress toward moving out of ICU and being able to hold our baby.  

There were many questions and reservations going through my mind.  We were not able to speak directly with the surgeon or one of the cardiologists at that time.  This is when I put the call in to Dr Raunikar.  After talking with him we were more at ease with the decision and prepared to move forward.  This morning I was able to speak with the surgeon and the plan was to proceed with surgery tomorrow around 2pm.  At that time Dr Bradley, the surgeon, turned down the external pace maker to its lowest setting.  

With the pending surgery in mind, we rented a car and Bryan headed home around noon to get Reese and bring him back to be with us.  Not knowing how things would progress, we were unsure if we would have another chance to get him.  The plan was for them to stay at home tonight, gather up some things we need, and head back this way in the morning. I stayed at the hospital most of the day and Jordan joined me later in the afternoon.  

Around 5 pm we left and came back here (Cross Bridge house) for dinner.  After the shift changed at 7pm I headed back to the hospital to meet the night nurse and get the latest report.  Tara was our nurse again tonight and she was pleased to meet me at the bedside with great news!  After watching Brinkley for the day, the surgeon feels like he is able to maintain his blood pressure with the heart pacing as it is now.  This means that a pace maker is not necessary!  

The Fellow on duty tonight talked with me about the decision and said that the next step is to work on removing the breathing tube tomorrow.  We will continue to observe him after this and make sure that this does not affect the pacing.  If there are no problems, they will dismiss the plan and we will continue with aggressive treatment for the lungs.  (There was some improvement today and we started antibiotics to deal with some bacteria that was found.)  The lungs can be treated more aggressively without the tube.  This means we could potentially be holding our baby this weekend and even possibly moving out of ICU.  

Brinkley made it clear today that he is ready to be held!  I've told his nurses that he loves to be snuggled and that is what he needs more than anything.  While I was away today he got upset and had to be lifted up to adjust his positioning   The nurse said as soon as she lifted him up as if she was going to hold him he immediately stopped crying.  Later, after I returned, he had to be lifted up again and the same thing happened.  My baby needs love!  I am more convinced everyday of the importance of love and nurture in his recovery.  

With the two steps forward today we just may be inching closer to that snuggling he and Mommy both want.  After this I may never put him down!

Honesty is the best policy

Can I just be honest with you for a minute?  This is hard.  It is really hard.  I haven't held my baby in a week and I haven't seen my precious Reese in nearly a week.  

When we talk to Reese about adoption we tell him that sometimes Mommys and Daddys can't take care of children and keep them safe so another Mommy and Daddy adopt them to make sure they are safe and taken care of.  I don't feel like I am doing a very good job of that right now.  We are a nine days away from the 4th anniversary of the day Reese joined our family.  December 22, 2008 we received the best Christmas gift we could have ever received.  Reese is a very special blessing.  It brings tears to my eyes just remembering his sweet little voice repeating that back to us, "Reese, what are you?" "A very special blessing".  

Our family is doing a wonderful job of taking care of him while we are away, but I miss him desperately!  

In August he started 4K and, bless his poor teacher's heart, his home life went crazy within a couple of weeks of that.  As if starting school wasn't change enough, he was dealing with parents that were stressed out with a complicated pregnancy.  He started school on Tuesday, August 28th and I was admitted to the hospital on Tuesday, September 4th.  Needless to say, his world has been a little upside down.  

We have been so proud of the progress he has made with his writing and learning to recognize his letters and numbers.  He has done well academically.  Behavior, on the other hand, has had its ups and downs. We have had quite a few notes sent home about times he has not been able to control himself.  It has been so hard to tell if some of this is simply because of our less than normal home life or if he is showing us that there is another problem.  

It has been a struggle to know how to handle the issues that we are having with him.  The calls to us crying and begging for Mommy and Daddy don't make it easier.  His prayers break my heart.  "Please make Charleston not so far away."  As much as our whole family loves Charleston, I have to agree with his prayer.  The seven weeks in NICU were hard, but at least I got to make the 20 minute drive home every night/afternoon and put my arms around my buddy.  The thoughts of being here another full week at the least makes this Mommy more than a little blue.  

I'm praying for some meaningful time with Reese this weekend and for wisdom and peace about how to handle his behavior issues.  I'm also praying for strength to make it through this time.  I'm not supermom and I am reminded of that more and more everyday.  What I have to remember is that I am not supposed to be supermom.  I am supposed to be me and right now me is tired and feeling helpless.  Just a reminder that it is not about me and I am not expected to do this on my own.  

Psalm 121

New Century Version (NCV)

I look up to the hills, but where does my help come from? My help comes from the Lordwho made heaven and earth. He will not let you be defeated.  He who guards you never sleeps. He who guards Israel never rests or sleeps. The Lord guards you.  The Lord is the shade that protects you from the sun.  The sun cannot hurt you during the day, and the moon cannot hurt you at night. The Lord will protect you from all dangers; he will guard your life.  The Lord will guard you as you come and go, both now and forever.

Wednesday, December 12, 2012

It's a dreary day

The weather has been beautiful since we arrived last Tuesday.  The temps have been in the mid 70's and it has been sunny.  Today, however, that changed.  We woke up to a dreary, cold, and rainy day.  Much like the weather, we have been feeling pretty crummy today.  The days are starting to take their toil on us.  

We arrived at the hospital this morning and met our nurse for the day.  She told us that the left lung had continued to improve, but things had shifted and the right lung had a large amount of fluid around it.  It was going to require an additional chest tube for drainage.  Also, the pacing has not made any progress yet.  This was hard to hear.  I had a hard time holding it together.  

Dr Raunikar called us this morning and spent 25 minutes on the phone with us.  He was walking us through everything that has happened to this point and talking about future plans and treatment.  He was very encouraging and helped us to feel a little more at ease with the slow progress.  Thankfully, any and all follow up will be able to happen in his office.  That is a blessing that we will not have to come back and forth to Charleston.  Before leaving us he prayed with us.  This is just one of the many reasons we are in love with him!

Soon after speaking to Dr Raunikar, the chest tube was placed and they were able to immediately drain a little over an ounce of fluid from around the right lung.  That is a lot of fluid from my very small baby.  The immediate x ray showed some improvement and another one will be done tonight or early tomorrow.  Once these look good we can work toward removing the breathing tube.  

Bryan and I both were exhausted after an emotionally draining morning.  We told the nurse that we were going to go home to rest and she said, "I don't mean to be rude, but you look tired.  I think that would be a good idea."  We just ate a quick dinner and will be headed back to check on him in the next few minutes.  

Please pray for us as this is beginning to be very draining.  Pray for the pacing issues and pray that we will be able to enjoy some time with Reese this weekend.  

Tuesday, December 11, 2012

Another day in PCICU

When we were expecting Brinkley I saw a photo of a nursery with this verse on the wall.  I had read this passage many times, but that day it hit me that this is exactly what my Brinkley needs to be reminded of everyday.  When he arrived I made the design that you see here and put it on the wall in his NICU room.  It was always by his bed or in front of him.  Now, I realize that he cannot read or even understand what this means right now, but I know and everyone who came into his room to care for him knew.  I can't wait to get it back up for him.

We'll be waiting a few more days for that room though.  Today the doctors stopped guessing on the number of days.  Brinkley has made it clear that he is going to do this when he is good and ready and not a minute sooner.  He is continuing to make small progressions everyday.  Today his x-rays are getting clearer.  The respiratory treatments appear to be helping.  They also determined that there had been some nicking of surrounding vessels during the surgery.  This is common and is not dangerous.  It has however caused some drainage that is mostly the fat content from his formula.  Because of this, he will be put on a different type of formula until this has time to heal.  This is not a bad thing since I didn't feel like he was tolerating the formula well.  The dietitian was going to help me makes some changes, but I guess Brinkley took care of that for us.  

We are still watching the pacing issue.  Dr. Habib, the attending this week, wants to give that a little more time before making a plan.  Pray that it will take care of its self.  

My sweet Brinkley is chosen and set apart and I can't wait to have him well.  Look out world, here he comes!  

Monday, December 10, 2012

Not much change

Today were we able to be fairly productive with business type things.  The hospital sent someone to meet with me today to take over our insurance issues.  Brinkley qualifies for several forms of supplemental insurance and I have not been able to get anywhere with the follow up on my own.  I was able to sign off on some paperwork that gives them permission to take care of all of it for me.  They fill out the paperwork and do the follow up.  What a blessing!  I was also able to get some things at home taken care of via a few phone calls.  

As for Brinkley, we haven't seen much change today.  The attending doctor came and spoke to me for a few minutes before we were asked to leave the PCICU due to an emergency with another child.  They had just done an x-ray of his lungs but he had not had time to see it yet.  With that being said, he has been getting some respiratory treatments today.  His left lung has a lot of secretions that are breaking up and draining very slowly.  There are a few different things that could be causing this one of them being infection.  He is being watched closely for this.  He can not come off the breathing tube until this has cleared up.  Another reason for this could be the placement of the tube, so the tube was adjusted and we will see if it makes a difference.  

The other big issue that we are dealing with is his heart pacing.  Right now they are pacing his heart with an external pace maker.  After this type of surgery it generally takes some time for the heart to re-pace itself.  Like everything else, he is doing this very slowly.  They have been able to adjust the machine a little, but he is still not able to be removed.  Now we are watching to see if he may require a permanent pace maker.  

It is going to be another day or two before he can come off the breathing machine.  We can't move out of ICU until this happens and we can't handle him until then.  Please keep praying!  We are content to be here as long as we need to be, but we want to snuggle our baby!


Faith is placing all that you are, all that you can be, and all that you do in the hands of God.
Jim Burns

God has a funny way of using unexpected things in my life.  This morning I opened up my email and found that two of them were perfectly placed a midst all of the Christmas sale reminders.  The first was from Jim Burns (a youth ministry guru) and it was about faith.  I have heard these verses hundreds of times, I have even taught on them, but today I needed this reminder:

Now faith is being sure of what we hope for and certain of what we do not see.... And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him.
Hebrews 11:1, 6

Right now I can't see much with Brinkley expect a lot of cords, tubes, and equipment that we thought would be gone by now.  He is progressing so slowly that sometimes it feels like it will never change.  If feels like he is going to struggle forever and I will never be able to hold him and comfort him.  (I haven't been able to hold him since before surgery on Friday and we are looking at a couple of more days.)  I have to keep reminding myself that there is a plan and it is all going to come together in the proper time.  It may not be my time, but it is the perfect time. I have to have faith and hold on.  

The next email that I opened was this:

"The people refused to enter the pleasant land,
  for they wouldn't believe his promise to care for them.
Instead, they grumbled in their tents
  and refused to obey the LORD."
Psalm 106:24–25
view in context

encouragement for today

The "pleasant land" was waiting for God's people to enter and conquer—and the people refused to budge. Yes, the Israelites would have had to step out from their comfort zone. They would have had to trust that it really was a good land and that God would take care of them. They didn't trust; they grumbled. How many blessings might you be refusing because of unbelief? To what might God be inviting you, if only you'd be willing to stretch beyond your comfort zone and trust that he is leading you to a very good place?
—Diane Eble, author of Abundant Gifts: A Daybook of Grace-Filled Devotions

It is hard to think about it this way, but right now this is our "pleasant" or as other translations phrase it "promised" land.  Though MUSC may not look like the land flowing with milk and honey, it is where our promise is going to be fulfilled.  God has fixed Brinkley's broken heart and He is going to continue to take care of us.  Unlike the Israelites, we jumped (or more literally flew) out of our comfort zones.  We are trusting that he is going to care for us and our sweet Brinkley just as He promised.  

It is my prayer that we would be able to avoid the grumbling and stay out of our tents.  Our better than new baby will be blessing enough, but I can't wait to see what else He has in store for us.  We are placing it all in His hands.  They are so much better than ours anyway!

Sunday, December 9, 2012

Post Surgery Day 2

This little guy is working on his own time frame and doesn't seem to be concerned with how we feel about that.  He is still in PC-ICU recovering.  There are still some issues with fluid on the left lung, but it has improved drastically and is continuing to get better.  The anesthesia has worn off completely now so he is a little more alert and is moving around.  He opened his eyes up fully this afternoon and smiled at me. (He just started smiling two weeks ago and has been a little stingy with the smiles.  This is only the third time he has smiled at me.)   They are using pain meds and anti anxiety meds as needed to keep him comfortable and calm.  

With the breathing tube in, he is not able to cough.  As the secretions are breaking up around his lungs he feels like he needs to cough and appears to be gagging.  He gets really upset and tries to cry, which the breathing also prevents.  I broke down today seeing him struggle with this.  It is so hard to know that he needs help and I can't help him.  The nurse and respiratory therapist suction him when this happens and then he is able to calm back down.

The fact that Brinkley is a preemie, still small, and has Downs have somewhat created the perfect storm for him.  All of these things are playing into his recovery time and making things a little slower than expected.  He has his own ideas of how this should work and it is not the same as ours.  Originally, the thought was that he would be able to move off of all assistance by today and move back to the pediatric cardiology unit today or tomorrow. That is not going to happen for a few more days.  The doctor told us this morning to plan for at least 14 more days here.  

Apparently Mr Brinkley is planning on having Christmas at the beach!  

Saturday, December 8, 2012

Post Surgery Day 1

I have had several texts asking about Brinkley's progress today.  I am a little behind as we have tried to spend as much time with Reese as possible today.  First thing this morning we went to the hospital and sat with Brinkley and met with the doctors when they did rounds.  Bryan and I took turns staying in PCICU with Brinkley and in The Atrium with Reese.  The Atrium is a wonderful HUGE playroom in the Children's Hospital that is for patients and their siblings.  Reese LOVED it and begged all day to go back.  

Brinkley had a pretty uneventful night.  Of course he was heavily monitored all night and had a few echo cardiograms to make sure that things were working properly.   There were a few dips in numbers, but nothing unusual or worrisome.

This afternoon there was some concern with his lungs and the way that the fluid was draining.  This was examined and dealt with and seems to be moving in the direction that the doctors want now.  Down Syndrome causes low muscle tone which may be contributing to this issue as well as some of the other fluctuations that we are seeing in the numbers.  He is still heavily sedated but is being weened off the machines and medicines/drips slowly.  He was starting to stir around a little this evening and opened his eyes up a tiny bit to peek at Jordan and I.  That was certainly a welcomed sight!

We have been told that it will probably be Monday before enough of the tubes are removed and he is stable enough for us to pick him up and hold him.  I have been giving him plenty of kisses on his little cheeks.  

Reese is headed back home tomorrow.  We enjoyed a fun time at the beach with him today.  And yes, the wild man stripped himself down and went for a swim in December.  He was having such a good time we didn't have the heart to stop him.  Oh well, guess I'm not winning a Mommy award for that one.  

Friday, December 7, 2012

One long wait

Around 4:30pm we got a call from the Surgical Nurse Practioner.  I anticipated that she was going to tell me that they finished a little earlier than expected.  Well, I was wrong.  Quite the opposite in fact.  

We were told ahead of time that Dr Kavarana is very meticulous.  The Cardiologist told us that after completing the procedure the Dr K would inspect his work with a scope to insure that he was satisfied with the repair.  After doing this, he decided that a portion of the valve repair was not to his liking.  It was acceptable and could be left as it was, but it may require a touch up at some point in time.  Rather than leave it that way he wanted to correct it.  This would take an additional 2 to 3 hours.  

The surgery was complete around 7pm and Brinkley was sent back to PCICU (Pediatric Cardiovascular Intensive Care Unit).  We got to see him around 8:30pm.  He was still under anesthesia and on the ventilator.  They will keep him somewhat sedated for another day or two and he will be worked off the ventilator sometime tomorrow.  He has a little fluid around the heart, which is fairly common with this type of procedure, and they were working to drain that when we saw him.  Please pray that they will be able to get this under control quickly.  

Thank you for your prayers today and keep them coming.  We still have a long road to recovery and hate to see him covered in tubes and cords.  Slowly but surely we should start seeing the cords and tubes disappear.

It's surgery day

Mommy and Brinkley had an uneventful night.  I slept fairly well to be in the hospital.  He was a little fussy due to going NPO (nothing by mouth) at midnight.  This boy likes to eat and the fluids in the IV just don't do it for him.  Just wait little buddy!  In a few short days you will be able to eat better than you ever dreamed!  

Due to the fact that he was going NPO and we are going to adjust his feedings after surgery, Dr Spencer (the attending Dr in this unit) said to give him as much as he wanted whenever he wanted it yesterday and last night.  I did, and boy did he eat.  I was quite surprised at how well he did!  I believe that I will have one chunky monkey after his heart is repaired and he can catch up on all that he was missing!

He had several Tet spells yesterday, but none through the night.  Hopefully, in a few short/long hours that will be a thing of the past.  No more Tet spells for him.  

Bryan is on his way back here with Reese.  Please pray for safe travel for them and that Reese will be good for Jordan and her roomates today.  They have graciously offered to take care of him for us.  If all goes well, we plan to take him to James Island to see the Christmas lights before he goes back home on Sunday.  

Please be in prayer today.  Pray for Brinkley to be strong.  Pray for Dr. K (I have no idea how to spell his name) who will be performing the surgery.  Pray for us as we wait it out and then learn how to care for Brinkley and his fixed heart.  

We have asked our families to stay home and pray for us from there.  We want to have all of our attention focused on Brinkley and the team caring for him.  Don't worry about us though.  The wonderful people at Cross Bridge are making sure that we are cared for while we are here.  

With that said, if you are looking for deserving places to make year end tax-deductible gifts, please consider giving to either of these organizations in honor of Brinkley:

Thursday, December 6, 2012

We have a plan!

Brinkley will be having surgery tomorrow.  It will be late morning or early afternoon.  The process will last about 6 hours.  They are going to be able to do a full repair!  We probably will not be able to post anything until tomorrow evening. 

Charleston Day 3

First things first, let's all wish Brinkley a happy 3 month birthday! 
3 months old

To celebrate, some hospital volunteers came by with a cart and let me choose a toy for him.  
Bryan dropped me off at the hospital this morning and he headed home to spend some time with Reese.  (I'll take my turn next weekend.)  The doctors made rounds this morning and gave me an update from last night.  He had a couple more tet spells during the night, but otherwise had an uneventful night.  (We like uneventful!)  The nurse practitioner for the surgery team made rounds with the doctors and talked with me a little about meeting with their team.  Both surgeons have been in surgery this morning, so I have not seen them yet.  I expect them anytime now.  
While we are here, I am taking advantage of our time and having all of my questions and concerns addressed.  I just spoke with the nurse practitioner for another surgical team about Brinkley's g-tube.  There have been some issues with leakage and irritation.  She has made a plan for us and is taking care of it.  Yesterday I talked with the dietician about some concerns with the formula and we are making some progress on that as well.  
We have also seen OT and PT and they were familiar with our therapy center at home and talked about how wonderful they are!  They evaluated Brinkley and said that he is in the 50th percentile for his skills according to his real age.  If you are familiar with preemies you know that medically they are evaluated based on their adujusted age (this is the age they would be had they come on their due date).  To have Down's generally also puts children behind on these scales.  Our little red-headed wonder is showing everyone what he is made of!  He is not letting Down's or prematurity hold him back!  He is continuing to amaze me and his care givers.  
I have been so overwhelmed with the love and support that we have gotten through this journey.  I am so blessed and thankful!  It has amazed me to see friends from high school and college sharing our story.  Former students from ministries that we have served in, people that we have met through the hospital and total strangers are having prayer times for us and telling people about our sweet Brinkley.  Thank you, thank you, thank you!  I can not thank you enough for the prayers and the support.  Journeys like this often feel very lonley so it is nice to know that so many people are thinking of us.
Please continue to pray and I will try to update later when we have a surgery plan.