Welcome to the life of a special needs baby

This has been one of those crazy busy weeks.  Between the two boys we have had appointments everyday this week.  Today we saw our WONDERFUL Cardiologist, Dr. Raunikar.  

Having a preemie and/or special needs child makes you quiet accustomed to tests and scans.  Initially, all of these tests and scans sounded awful.  I had no idea how all these tests work.  That brought a lot of fear with it, so today I thought I would enlighten those of you who may potentially deal with these tests.

Today we had an echo cardiogram and an EKG.  

The echo is basically an ultra sound of the heart.  A lead (a sticker with a wire attached) is placed on each side of the chest and the technician uses the probe and jelly to see the heart.  Brinkley has probably had close to 20 echos by now.  He has had so many that he generally doesn't get upset anymore.  Today he even smiled at the tech and "talked" to me through the procedure.  

The EKG bothers Brinkley much more than the echo and it is a little more difficult for the nurse.  Numerous little stickers are placed all over the front of the body.  Wires with clips are attached to the stickers.  The wires run to a computer that is monitoring certain activities of the heart.  The hard part is keeping the child still.  If they squirm the wires easily fall off the stickers.  Brinkley HATES this one.  He does not like the stickers.  He doesn't like them going on and he certainly doesn't like them coming off.  

Even with all of this going on this is how we left the doctors office:

He was quite content and ready to eat after spending nearly two hours at the Children's Hospital Outpatient Clinic.  We'll be heading back tomorrow to return the heart monitor that they sent us home with.  We'll also be getting a chest x-ray.  These are all to set new baselines for Brinkley following his surgery.  For now we'll be returning pretty regularly to Dr Raunikar, as well as all the other doctors.  Next week we only have one appointment, but the following week we have seven!  Such is the life of a special needs mom.  

Wacky Wednesday

I'll let the picture speak for itself...

Just in case you don't see it...

Leprechauns and Encouragement

Passion: a strong liking or desire for or devotion to some activity, object, or concept

This one way that Webster defines passion.  Everyone is passionate about something and they choose to express their passion in different ways.  My cousin is passionate about Notre Dame.  Just look at the way he showed up for the National Championship game.

One thing that Bryan and I have become very passionate about is finding forever families for waiting foster children.  We made that leap in 2008 and our lives have never been the same.  There were struggles through the legal process and struggles now as we battle the effects of the hand he was dealt prenatally.  But just like anything in life, if it is worth having it is worth fighting for.  (It's funny how this applies to both of our children though in completely different ways.)

Several months ago Bryan and I were asked to share that passion by writing a letter showing our support and our churches support of an event coming to the upstate.  This event is called Wait No More and it's goal is to find families for waiting kids.  In SC we currently have 550 foster children waiting to be placed in their forever families.  These children have been through the legal process and are ready to be adopted.   

As exciting as the thought of this event is, what was even more exciting was a little unexpected.  We were invited to a Wait No More informational luncheon for church leaders by the Edens family.  We were connected with them a couple of years ago through an adoption ministry that they coordinate at their church.  They too are adoptive parents and currently our boys are playing on a basketball team together.  We joined the Edens at their table along with two other couples.  Who would have ever guessed that those families ,whom I had never seen before, would bless me so much in the hour and a half that we sat together.  

The family to my left were from the Edens' church (in Pickens) and the family to my right were from a church in Greenville.  The family from Pickens has adopted two bi-racial children.  When they mentioned that their children were bi-racial my heart smiled.  It is so important to us for Reese to be friends with other children that look like him.  Before meeting this family the only other bi-racial children he knew were my dear friend Beth's children and they now live in Germany.  Just when I thought that this would be a great family to be friends with, the deal got even sweeter.  

This family was aware of Brinkley's condition and had been praying for us.  People I didn't even know!  The husband is one of the pastors at the church they attend and said that he had driven through our church parking lot a few Sundays ago and stopped there to pray for our service that day.  You can not imagine how powerful that was to us.  We serve in an area where churches do not work together.  Everyone is afraid that someone else is going to take their people or do something bigger and better.  People are just as serious about their church affiliation as they are about whether they are a Tiger or a Gamecock.  

As if it weren't enough to have met this couple, we started talking to the family on my right and found out that they have a 29 year old special needs daughter.  It was such a blessing to hear their wonderful stories about their lives with Joy.  The wife told me how she has had to fight for Joy her whole life, but how worth it every step has been.  She and her husband encouraged us and gave us their contact information.  She asked that I keep in touch with her so that she could help me or just be a listening ear.  

We never expected that we would walk out of this luncheon about foster children with two new sets of friends/support along with a renewed passion for getting the word out about these awesome kids.  

*If you or your church leader would like information about Wait No More, please contact me by email at crystalholder@marathonchurch.org.

Helping his broken heart

I have a little catching up to do.  Sorry!  Life is crazy trying to learn to balance all of this. We had Christmas with our families this weekend, so I have been tucked away trying to get my house in some sort of order.  Reese loved having everyone over and all of the celebrating that went on.  

I am reminded everyday how special both of these boys are.  I couldn't ask for two sweeter or more handsome boys.  Reese is so loving and caring.  He truly has a heart for people and I can't wait to see how God uses that.  Yesterday he took a box of large band aids out of his drawer and put one of them on Brinkley.  

He said that it was for Brinkley's heart.  He has been a little obsessed with taking care of hearts lately.  For a long time we hesitated to try to explain to him about Brinkley's heart.  One of the Cardiologists in our group encouraged us to talk to him.  After some thought and prayer we told him that Brinkley had a hole in his heart and that was why he had to go back to the hospital.  We explained to him that the doctors would have to do surgery to fix Brinkley's heart.  Since this discussion he has insisted that every medical professional we see must check his heart including the therapist and the allergist.  He also insists that they check mine as well.  So far everyone but the therapist has complied with his requests.  

My Reesey is slowly but surely becoming himself again.  We have seen drastic improvements in his skin problems and improvements in his behavior.  He was retested by the Allergist and he has not developed any new allergies and he is still tolerating limited amounts of dairy well.  The doctor agreed that many of the symptoms we have seen are likely stress induced which would explain the recent improvements in the conditions.  He started play therapy last week and we will be interested to hear the Therapist's take on the situation when we return for his next session.   We anticipate that he may be diagnosed with OCD, but we know that the potential is there for ADD/ADHD due to his prenatal drug exposure.  There is one thing that we have no doubt about though, Reese loves Brinkley!

As for Mr Brinkley, we had his 4 month check up today.  He is a now a member of the 9lb club weighing in at 9lb 8oz and 22 inches.  That puts him somewhere between the 1st and 4th percentiles.  We love our little tiny buddy!  Most parents say they don't get much use out of Newborn clothes and diapers, but our little guy is rocking his tiny stuff and I love it.  I get the privilege of keeping him little just a little longer.  

We are still struggling with his feedings and the formula intolerance seems to be getting worse.  The fact that the specialty formula is out of stock with the manufacturer and I am almost out may help move this process along.    I am expecting the Pediatrician to get back to me on Wednesday with a plan.  As a precaution, she is sending us to a GI specialist to make sure that there isn't something else going on.  She and I both feel that it is truly and issue with the formula, but since GI issues are common with Downs we need to be certain.  It is also common for children with Downs to have eye, ear, and thyroid issues so we are getting referred for yearly or bi yearly evaluations with those doctors as well.  

It's time to get the wild man down for the night, so I must go, but I will try to update a little more this week.  Thank you for continuing to follow us, support us, and pray for us.  

   

I miss the hospital

I miss the hospital. 

What?  

Yes, I said it, I miss the hospital.  Our first full week at home has proven to be a bit overwhelming.  Brinkley had several appointments and I attempted to go back to work. I quickly realized the blessing of the hospital.  It is exhausting, but while Brinkley was there I had very little stress.  I didn't have to think about keeping up a house.  I didn't have to think about balancing a schedule and I didn't have to worry about finding time for myself.  

Brinkley had two doctor visits on Monday (one was unexpected) and another on Tuesday and Thursday.  He had two the week before and has four more appointments scheduled for this month with the possibility of a fifth one.  Trying to figure out how to fit all of this in and still be able to work is tricky.  I don't know how other special needs families make this work, but I would gladly take suggestions.  I can't imagine how anyone could work full time and keep up with all of this.  

Since Reese joined our family in 2008 I have worked part time (sometimes up to three part time jobs at once to make ends meet).  It is important to us to have as much time with our kids as possible, so we live in such a way that we can get by with me working part time.  I enjoy working and it gives me an identity outside of being Mom.  Don't get me wrong, being Mom is my favorite and most important job.  Financially, it is necessary though.  The fact that I had to take 12 weeks off could have been a financial disaster if we hadn't been blessed with an adoption tax credit that allowed us to pay off our debt just a couple of months before Brinkley was born. (With the exception of our mortgage.  Dave Ramsey would be proud!)  It's a good thing since we are already well over $500,000 in medical bills for Brinkley.  

As if all the appointments and caring for a special needs child were not enough add the  expense of caring for them and anyone would be stressed.   It doesn't make it any easier when you rarely get a break from the madness.  While we were in the hospital the medical staff would encourage us to get out of the hospital and take a break.  It was nice to walk down to King St or to drive out to Mt Pleasant and have a little time to my self or with Bryan.  We didn't have to worry about Brinkley because the nurses were taking care of him.  Unfortunately, at home we don't have the luxury of trained medical professionals and their equipment on hand at all times.

Wednesday night we drove into Anderson and on the way home I went into Walmart for about 10 minutes to get a few things.  When we got home I realized that those ten minutes were the only ones I had spent away from both of my children since we came home on January 1st.  Thankfully, Bryan stayed home on Friday and watched the boys while I went to pick up birth certificates and met my sweet friend Anna for an afternoon free of children.  What a blessing!  

Brinkley has four more weeks on this formula that is reeking havoc on him.  Once he is off of it we are hoping he will be able to take a bottle again and lose his G-tube.  Once this happens and he is completely healed from his surgery we will be able to consider leaving him with other people.  Until then he will be joining us for any dates we may be able to take.  He's not a bad companion, but the fact that we are having to feed him every two and a half hours makes it hard to be gone for very long. (Taking his feeding pump everywhere is not always practical.)  

So, yeah, I miss the hospital.  I would never wish long term hospital stays on anyone, but want to encourage you to see the positive in it while you are there.  Please don't feel sorry for me, that is not why I am sharing this.  My hope is that by being honest some other family that is dealing with similar issues will see that they are not alone.  Don't beat yourself up!  Know that many have gone before you and are willing to be a shoulder to lean on or cry on if you will only reach out.  

Earlier in the week Bryan called it "A Perfect Storm".  That is so true, we are currently living in the middle of the perfect storm.  The good thing about storms is that they pass.  Maybe when this one passes it will leave me a secretary to keep up with this new crazy schedule of ours!

Oh, It's Monday!

This little fella sure knows how to keep me on my toes.  I have come to the conclusion that nothing is going to be easy or text book with him!  

We had a long sleepless weekend.  Between digging out of the clutter in our house and dealing with Brinkley's feeding issues, I am beat!  This formula we were sent home on is not sitting well with Brinkley (or any of us for that matter).  He is not tolerating it all and nothing seems to be helping.  

The main thing that kept us in the hospital so long was fat drainage.  During surgery parts of his lymphatic system were nicked and the fat from his formula was draining into his chest area.  He was put on a special formula called Enfaport that is made with vegetable and plant based fats unlike a typical formula.  This allows the body to absorb the fat differently.  Apparently it is nasty.  He doesn't like it at all and has a hard time taking it by mouth.  (This feels like a big set back to me.)  Not only is it nasty, it is expensive.  He has to stay on it for 6 weeks and the 6 week supply cost $324.  Needless to say the majority of feedings are going through his feeding tube for now.  

Brinkley's caloric intake is too low, so the dietitian at MUSC gave me a plan for how to increase his intake.  Unfortunately, this is not working so well.  If anything we are backing up.  Brinkley throws up with just about every feed.  I have tried spreading them out further, giving him the feeds over longer periods, changing the volume of the feeds, and nothing helps.  He vomits all night and just cries and cries.  It breaks my heart.  He can't be getting anywhere close to the amount of calories that he needs.  

This morning the vomiting got so bad that it burst the balloon that holds his button in his stomach.  (The button is where the feeding tube connects.)  The button fell out and I had to rush him to the surgeon's office first thing this morning to replace it.  The poor little guy can't catch a break!  

We are about to head out for an appointment with the geneticist.  Hopefully they won't need to handle him very much.  I'm not sure how much more the little guy will deal with today.  

If anyone has ever had to deal with Enfaport and has suggestions, I am all ears!  

We made it!

We started the the new year out right!  Brinkley was discharged from the hospital on New Years Day.  Our nephew Jamie and his fiance Stephanie drove Bryan to the hospital with the car bed in tow.  We made it home late that night and spent our first night with all four of us together at our house!  I have spent the last couple of days trying to dig out of all the mess we accumulated and taking both boys to doctor appointments.  

Our last appointment with the Cardiologist, Dr Raunikar, was on December 3rd and it ended with us in an ambulance on the way to PICU at GHS with a trip to MUSC to follow the next day.  Yesterday, January 3rd, we went back to see Dr R for our surgery follow up visit.  I must admit, I was a little nervous walking into his office.  There was the sneaky feeling that this visit could end the same way and we would start this unwelcome roller coaster ride again.  

Thankfully, that was not the case.  After two and a half hours of tests to establish new baselines for Brinkley we left.  We left in our car going to our house!  Thank you Lord!  

Brinkley is doing well and we will have several more follow up appointments next week.  Our biggest hurdle right now is getting back on track with his feedings.  I have been assured that it will come with time.  He has done a little better today and that has given me a little glimmer of hope.  

You probably will not hear much from me this weekend.  I'll be buried under all the junk in my house that has to be sorted and put away.  Oh the joys of an unexpected month long trip!  At least we came back with mended heart and a healthy baby boy!