Christmas, More Christmas & An Early Birthday!

We have had a wonderful weekend but I am just a little exhausted.  Ok, a LOT exhausted.  I love Christmas but as this year approached I felt overwhelmed and anxious because I was not prepared and was concerned about when we would find the time to finish our shopping.  Every year we say that we are going to take care of the shopping early but we always seem to be hitting the stores on Christmas Eve.  This year was no exception, it was not as bad this year though because I started the day with breakfast with my wonderful friend Raquel and then I got my "hair did".  Regardless, next year I hope will be the exception!  Anyway, eventually all gift shopping, wrapping and grocery shopping was done and the festivities began.  It was a wonderful weekend.  From Christmas Eve with David's family, which I snatched a beautiful bird feeder made by his uncle, to a great Christmas morning with Miller and Steven, late morning was celebrated with my family and then we were joined by David's family and friends for more fun.  It was a wonderful time.  Last night, I was on the computer with Steven asleep on me and Miller right next to me, it was the perfect ending to my day...Christmas is always special but this year was just a little more special. 

Today we went over to my parent's house to have lunch with everyone again and David's parents also came.  It was a great time to celebrate his birthday even if we are a day early.  Happy Birthday David!!!  There is so much I want to say about David but well, he might kill me if I do :-)  But here are a few things about him that I love:  he loves me unconditionally, has more compassion than anyone I know, loves two little boys in a way that melts my heart and brings tears to my eyes and he is a wonderful cook :-)  Again Happy Birthday David, we love you!!!! 

I hope that everyone had a wonderful and merry Christmas!  I plan on sharing some pictures this week of our weekend, I am just too lazy to go get the camera right now, at least I am honest...until then!!!!

Tis The Season To Be Busy!

We have been enjoying some family fun so I have stayed away from the posting.  We had a wonderful trip to Acadian Village for lights, rides and funnel cakes last weekend.  The trip has become a little family tradition for us.  I love watching Miller get excited about something and Acadian Village is one of those things.  We also took a little trip around town to look at Christmas lights, Miller enjoys that but not near as much as I do.  Since this was Miller's last week of school, he had his first real Christmas party.  I am not sure who enjoyed that more, I know that he had a blast and I had a great time too.  I cannot believe how much he has grown, I wish I could slow things down!

Steven had a first this week, we did not make any adjustment to his medication!  His bp was still at a comfortable level so no changes.  I am praying that tomorrow it will still be good.  It is a wonderful blessing to start to see some control on it.  Happy Dance!

I hope that everyone has finished with all of their shopping for this next weekend.  Because if everyone is finished then David and I will be the only ones hitting the stores through out this week to get things taken care of.  I know, not very likely but a girl can dream, right?  We did get a lot done this weekend but still not finished!  Every year I say that we are going to start early and every year I am freaking out because we are not finished, ha!  Needless to say, I need to go check my list again and map out my lunch breaks for the week. 

Hope everyone has a great week, I hope to post before Christmas but if not I hope that everyone has a wonderful Christmas. 

Someone is having a baby....

and it is not me!  Today Shelby Layne is the fourth and final baby of the year being born on David's side of the family. Did I mention that she will also be the only girl out of the 4?  I am so excited and I cannot wait to meet her.  Her dad and David are cousins, their other cousin and his wife had a little boy in April and of course Brandt, our nephew was born in March so our family gatherings just got a whole lot more chaotic!  Praying that everything goes well and that both Shelby and her sweet mom will do great.

Now on to Sweet Mess, he has hypertension and it is not a result of any damage to his kidneys.  That is from the test yesterday.  Now that leaves me a little frustrated, not because I want something else to be wrong but because I think in a cause and effect way.  But there is no known cause at this time.  So we will just continue to monitor his medication and blood pressure so that he is comfortable.  Maybe one day it will be improved, however I do not really get that impression.  Our insurance will only pay $4 a month for a machine, which is not a deal for distributors or we can purchase a refurbished one.  We will be hosting blood pressure testing parties soon!  We have decided at the recommendation of the doctor to purchase one.  We will need to check it daily and I cannot see myself taking him somewhere every day for it.  Weekly visits are ok but not for the time frame we are talking about.  If this was a need for a couple of months then yes I could see myself taking him in everyday but since we are expecting more of a long term issue it is easier to use the machine at home to monitor it.  Any growth spurt will most likely cause the need for his medicine to be adjusted and we have plenty of spurts coming ahead.  So just call me Nurse Melanie!  haha 

Well I hope that everyone has a great weekend.  We plan on checking out some Christmas lights and enjoying some good ol Family Fun!  I am not sure David will know how to act on a Saturday without college football but we have some other things planned to keep his mind off of it, ha!

Inconclusive Test So On To The Next One

Well no news is good news?  Not so sure but at this point we are continuing to rule out things that could cause Steven's hypertension.  The results from last weeks pictures show that his kidneys are the same size and seem to function properly.  Which is good but still leaves us trying to find the source.  It could be genetic but generally the signs do not show this young.  So our next test will be on Thursday at TCH again..going for the 3rd week in a row.  I am a Texas Girl but going every week makes it hard to miss :-)  This next test will show if he has any narrowing in his vessels leading into his kidneys.  This is another CT angiography (he had one prior to his VSD and ASD closure) that will also show if he has any vessels branch off differently.  Since his pulmonary vein was narrow and his aorta branches off differently that normal, no telling what we will find.  After all he is our Sweet Mess for a reason.  Now, as for what happens if one is narrow or branches off differently...I have no clue! I am thinking that if there is narrowing it will be opened during an angiogram, which is the test that they initially considered but they all believe that he is still too young for that.  We went yesterday to Dr. K for his blood pressure to be checked and sure enough 110 the first time and 112 the next, so we have increased the dose for one of them and we return next week.  We were also told that if there is not a specific cause, that it is a real possibility that he will be on medication forever.  Not exactly what I want to hear but as I have said before, I do not mind the medication if it is doing the job.  Only time will tell and test after test after test....

Now on to something fun, Bryan has not been very good.  This Elf is nothing but trouble from eating cupcakes in the fridge, playing with little cars all over the living room, to emptying the toothpaste in the bathroom sink.  I have never enjoyed something so much.  Miller has the most wonderful laugh and every morning, I get to hear it.  I think I am going to be so sad after Christmas when Bryan goes back to North Pole.  I wonder what else I can hide for Miller after Christmas??? 

So have you heard who is playing in the BCS Championship Game???  In case you haven't...LSU, oh and another school Alabama.  We stayed home and watched the SEC Championship game, just us...which never happens.  Alone or not, I am pretty positive that David could be heard through out our neighborhood yelling during the first half of the game.  I am pretty sure I could be heard cheering during the second half.  David gets mad when they do not play well but I am the always positive one.  I was starting to get a little nervous though.  I am not real sure how I feel about the repeat of the game of the century but as long as LSU beats Bama twice then I do not really care.  GEAUX TIGERS!

Someone was ready to play!!!  FYI, I do have shirts for him but he spit up on all of his LSU shirts so shirtless was the last option. 

Update...If Only We Had One

Well I was hoping that this week I would have some news but still nothing to share on Steven's blood pressure.  But all I have is that it is still high and we are still not sure why.  We have not been sent a bp machine because of insurance balking on it so we are still going to Dr. K weekly for them to check it.  On Monday it was 110 so we increased the dose for one of his medications.  The test was set up for Dec. 12th but Dr. K called Dr. R (Renal Center doctor) and on Tuesday morning I got called saying the test was moved up to tomorrow, as in Wednesday.   So David and I left Tuesday evening for Houston and were there bright and early in the Nuclear Radiology waiting area.  He was given his "dye" and two hours later he smiled and "talked" while they took his "pictures" but I haven't heard the results yet.  Praying that we hear something today or it will be a long weekend.  We will go back on Monday to Dr. K and have his bp checked again and we will see if the increase is helping.

Now, more for me to remember I want to write a little about our Thanksgiving holiday and Bryan the Elf.  We had a wonderful Thanksgiving weekend, it included 4 of our favorites: Family, Friends, Food, and Football!  Since we live not far from my family we go there in the morning and have lunch with them and then in the evening have dinner with David's side.  So we get LOTS of FOOD!  On Friday, we had our first of hopefully many "Friendsgiving"  Miller was with his dad and my parents kept Steven so we were kid free!!!!  David had to work so I was kid and husband free and since there was a LSU game on I went over to my friend's house to visit and watch the game until David got off.  Then we went to his friend's house to watch the end of the game and visit.  It was my favorite day of the entire weekend.  We rarely have the chance to do whatever and not be on some sort of time constraint.  It was wonderful!!!! 

While I was enjoying my free time I picked up, what I thought would be "Ricky the Elf" but I was wrong. You see, last year Miller got the Elf on a Shelf over at his dad's house.  He comes home one weekend talking about Ricky, which left David and I asking, who is Ricky?  Miller explains my elf!  This left us laughing because why would Miller name his elf Ricky???  I thought most kids made up a name for their elf, not use a name of someone they know...because for those of you that do not know, David has an uncle named Ricky!  Well this year I decided maybe Ricky should come see us so I asked Lara what color hair and eyes Ricky had so that I made sure to get the right one.  Last Saturday morning, "Ricky" was waiting for Miller when he woke up.  But guess what, it wasn't Ricky because his hair was too dark...so as I am fumbling with what to do next Miller, all excited says "I need to give him his own name, I think I should name him Bryan!"  Really, Bryan?  And again David and I are left trying so hard to keep a straight face because why, Bryan....because for those of you that do not know, David also has an uncle named Bryan!  The Elf is for him to have fun with so we are thrilled to have Bryan come and visit us everyday.  I know that having Bryan here is creating some of the best memories for us to have of Miller at this age and the fact that his name is Bryan is just icing on the cake for our sense of humor!!

Well I need to got wake up Miller to find Bryan so off I go...wishing everyone a great weekend and of course....GEAUX TIGERS!!!!

Long Day!!!

Today was such a long day, Sweet Mess woke up at 4 and we have been on the move since.  Our appointment was at 8:30 this morning and believe it or not, we were back in the office before I finished completing the paperwork.  SHOCKER!!!  The doctor was also very prompt which is also highly unusual, haha!  The bad news is that we do not have any answers and we are still on the same medication.  The good news is that she has a plan of action.  First off, she has her nurse working on getting us an automatic blood pressure machine for the house.  This will allow us to monitor and track it from home.  (this is really great for me, since I have been messing up on the doses)  We will go back in a month for a test that will have a dye run through his kidneys and we will see if maybe he has some scarring.  From what I learned today, scarring on the kidneys can be a cause of hypertension.  If he turns out have some scars, we will probably never know what caused them.  When Steven was born the kidneys were the original reason for the earlier than normal follow up to the pediatrician.  He had a couple of ultrasounds and x-rays to evaluate the kidneys.  In August his kidneys appeared to be all good according to the urologist and all the visual imaging that had been done on him.  The doctor today mentioned that maybe his function has not been good all along, however it doesn't explain why it would only start to cause the hypertension post surgery.  But again she doesn't know because short of a VCUG done on him at 3 weeks old, nothing else shows the function.  All this to say that the first test run on him will be to try and determine the cause.  If the results are still not conclusive another type will be ordered.  We are also going to increase one of his medications but we will not start that until we receive a machine for the home and until the lab work results are back.  I think I have a plan to prevent me from screwing up his doses in the future, I would say fool proof but I do not trust myself.  ha!  Overall I was happy with the appointment.  We wanted answers or at least a plan of action and I feel that we have gotten that.  It breaks my heart to keep putting him through more labs and tests but I am so thankful for his sweet disposition.  So until our next appointment I will be a spread sheet fool with medication and bp results...umm, can anyone help me with that, I am not on the best of terms with EXCEL.  :-)

Well 4 am was a LONG time ago...so it is time for some sleep!!!  But of course I cannot go to bed without mentioning that on Friday while some of you are out shopping most of Louisiana will be holding their breath while watching the #1 Tigers take on #3 Razorbacks at Tiger Stadium!!!!  So...

GEAUX TIGERS!!!!!



 

Our Boys Are Getting Big!

You know we have had a busy week when I only blog once...I really like to blog but it requires time and that is not something that I have a lot of.  We are still working on a smooth routine around here and I think that we might have finally found it.  Of course, things start going smooth just in time for Miller's Thanksgiving break, I hope that we can pick it back up in a week.  Miller had his first field trip this week and he was one excited boy.  They went to a farm in Dry Creek that has animals to feed, a corn maze and a pyramid made of old tractor tires.  I am kind of jealous because I am pretty sure I would have enjoyed it, I know that he did!  But regardless of how much fun he had, he is even more excited to be out of school for the week, ha!  I wish I could take off this week and stay home with him but we are swamped at work and I feel pretty bad about being off on Tuesday.  I guess it just gives me one more thing to be thankful for!!!

 

Today marks two months since surgery.  David and I are wondering where the time has gone.  It seems like it was just yesterday but on the other hand it seems like a lifetime ago.  Sweet Mess is doing so great when it comes to eating and sleeping.  He has started to really pack on the pounds and is loving some baby food and sleeps most nights until 5 am.  The only sign of his surgery is the visible sign of his scar.  When we left TCH they told us that Steven might have to stay on medication for some time post surgery but I do not think that it was expected to be two months with no end in sight.  I know that as you read this, it sounds as though I am complaining but it is not a complaint as much of a concern.  If he has to be on bp medicine for the rest of his life that is fine by me, if it works!  However, I will say that I am complaining about it being two different medicines.  Can we please just give him one?  I messed it up again last night.  So through tears of frustration I told David that I am not responsible for his medicine any longer because I am doing a horrible job!  Yes, I am the one who gave him his medicine all day today, since David was working...but it felt nice to say it last night.  We will see who gives it to him tonight at 10 :-)

Well I hope that everyone has had a wonderful weekend.  I hope that if you are like Miller and have the week off that you enjoy every minute of it.  We will be going back to TCH on Tuesday and plan on coming home with answers or at least that is my prayer! 

Guess who still has high blood pressure?

I know, I sound like a broken record.  Same song, different verse but the exact same chorus.  Sweet Mess had a doctors appointment today and sure enough the bp was still high.  But it might be coming down a little bit, it was 105 today.  Dr. K decided not to adjust any medication since we will be going to TCH next week.  He did mention that one of the medications is really great for function post-op but not might be the best for the kidneys so I am praying that Steven will come off another medication soon.  That leaves only one for me to mess up!

I hope that everyone had a wonderful weekend.  We did!  David went hunting which is great for him but not so great for Miller.  Since Miller was out of school on Friday he spent the entire day with his dad until I got off work.  So he was not looking forward to coming home to just me.  Miller has always been about David or his dad...never been a big fan of mom.  I felt so bad, he cried for almost a full hour.  He never really cries but the tears just would not stop.  I was willing to do whatever, which means we went to Mimi and Pawpaw's for the night and stayed all day on Saturday.  It was a good call!  Wesley came over with the kids, my uncle and aunt also came by, it was their first time to see Sweet Mess.  That has been the bad part of being on lock down for so long but we are finally getting out and about.  It was a really good day, hamburgers, art projects, and a Texas A&M loss and a LSU win. FUN DAY!  Normally I do not pull against A&M but since they have lost their minds and decided to join the SEC, I can't help it.  Next year will be a blast...maybe Brian will start to pull for a team that will have a "horse in the race" or maybe not!  Sunday was a very lazy day.  David came home and I didn't move for the rest of the day. 

Well speaking of being lazy, I plan on getting a really good night sleep.  Steven must be going through a growth spurt and is wanting to eat all the time.  We are very happy about this but 2:30am is not the best time even if it was David's shift.  Of course Miller had to come join the party and cough and grind his teeth for awhile.  So we are praying for some uninterrupted sleep!  Well no time like the present to find out...hope everyone has a Terrific Tuesday!!!!

Long Overdue!

I cannot believe how long it has been since I last posted.  First off, Steven did not like getting his shots last week.  All I could think of, as he was holding his breath and turning blue, please don't hate me and hold this against me!  I am telling you, he can send me packing for a guilt trip with just his eyes.  Luckily he was fine that evening and the rest of the weekend was uneventful. 

Oh wait, did I say uneventful....ha!  I cannot wait for the end to mention the "game of the century" or should I say the "game of the kickers"  I am so glad our kicker is better than theirs!  haha  I am sure for most of you it was not a very exciting game and I might even agree with you but in the end it was yet another win for LSU and that is what matters.  Oh and the McNeese Cowboys got a win and so did the Saints...overall great weekend of sports for me! 

On Monday, we took Steven to Dr. K to have his bp checked.  Of course it was still high.  Not high, high just his high!  So we have increased the amount per dose of the newest medication.  Now again, I want to make sure that I am never nominated for the Mother of the Year award and as proof, I gave Sweet Mess his medication at the wrong time early Tuesday morning.  Only 4 hours early, oops...so I called the office and they told me to bring him by just to have him checked out.  He was just fine, in fact his bp was perfect!  First time since surgery that his bp was 90/60...however even though it was perfect it was too soon and I pray I do not screw it up again.  I know many of you are probably wondering how I could give him the medication at the wrong time.  All I have is that I am kinda running on fumes these days and it was early in the morning and I just messed up.  I felt horrible and cried because I was so mad at myself.  I am just thankful that he was fine and again I pray that it never happens again.  But one way for me not to mess up again is to get this resolved and maybe off some of the meds, so yesterday morning I was calling TCH regarding the appointment for the Renal Center.  I had submitted everything last week and I still had not heard from them. Well I finally spoke to a scheduler and she was very surprised to hear of a baby with hypertension so she put us in on the 22nd!!!  I will be honest, it is not exactly the most convenient of times but I am so happy that it is so soon and not in February, which was the next option.  In the meantime we will still go to Dr. K's office for his bp to be monitored.  I pray that this will all be over soon and that I can have alarms set on my phone for normal reasons like waking up instead of for medicine!

Well I hope that everyone has a wonderful Friday and a great weekend.  Happy Veteran's Day to all of the courageous men and women that have served and those that are currently serving in our military, thank you for your many sacrifices!  To the families of those said men and women, thank you for your sacrifices as well!!! 

Team Turkey!

So today I noticed a cartoon picture on several facebook pages that has a Santa and a Turkey.  Turkey is letting Santa have it for invading his month.  With all that my family has experienced this year, I am with Turkey!  I cannot remember any other year that Thanksgiving has meant so much.  I have said this in previous post but I am so extremely thankful.  I know that many of you are doing the status updates on FB with something that you are thankful for and I love reading them.  Some are sweet, sincere and some are silly that provide a laugh but I wonder how come we do not express how THANKFUL we are through out the year.  Why is it only in November and always stops on the 4th Thursday?  I have so much to be thankful for that November cannot hold it all so I might just have a pumpkin, a turkey or a cornucopia on display year round.  I have always been a Santa girl, just ask my parents, but I am officially a member of Team Turkey from this point forward.  I still love me some Santa but Turkey is my holiday of choice this year.  Please know that I am expressing my opinions of the commercial aspect of the holidays.  I am very aware that without the birth of Jesus none of us would have anything to be thankful for.  And in case any of you are wondering about things I am thankful for, well here are just a few:  for answered prayers, for the creator who answers them, for the husband that I have always said "if I have to go through tough times I want to go through them with him" and that opinion has not changed, for the two wonderful boys that I get to call my sons, for the family that I was born to and the family I married into, for the best friends that are ALWAYS there for me, day or night, rain or shine, for the employers that have been so kind to me during some difficult times, for the total strangers that have prayed for my son and family, for the doctors who chose a career in healing and for the fact that they paid attention in class :-)...oh how my list can just go on and on but my fingers would surely fall off.  I pray that your list is too long for November as well. 

Geaux Team Turkey!!!

Of course you know where this is going now...I will also be so thankful for a Tigers win on Saturday!  I cannot wait for kickoff, is it Saturday yet? 

Geaux Tigers!!!!!

11-1-11...Umm, Where Did The Year Go?

It is hard for me to wrap my brain around the fact that we are in November.  This has been such a crazy year and I am sorta thankful that it is coming to an end but also just freaked out that it has gone by so fast.  It seems like yesterday that we found out that we had a baby on the way.  But that baby is our Sweet Mess and he is 4 months old!  Ok so he is a little over 4 months, don't judge, I know how old he is.  Speaking of not judging, I am so ashamed to type this...but I did not take any pictures of Steven in his costume.  Good thing is that I can dress him back up.  Or I can beg a family member to send one of him to me.  We had our annual Halloween Party on Friday and it was such a great time.  Miller was Elvis, Steven a monkey, David a disturbing a scarecrow and I was "Wenda" the female version of "Waldo"   I will try and post some pics soon.  David is crazy about Halloween and we normally have all costumes decided upon pretty early but this year, not so much!  Even if we didn't decide on costumes until the night before, we still enjoyed dressing up and had a wonderful time.  We didn't do any trick or treating yesterday, Miller was with his Dad and Lala so he stocked up on candy there!  Thank goodness, I would hate to have to help him out with eating it.  And well, Steven is a little young to be collecting candy!

However, Steven did have an exciting day yesterday.  It included an ECHO, EKG and Lab work.  It is kinda like the movie Groundhog Day, same thing every week.  But we are glad that they are willing to follow his blood pressure.  Of course it is still a little high and so we are now increasing one of the dose of one of his meds.  Tomorrow I will attempt to contact the renal center at TCH again and get an appoitment scheduled.  Until then, we will continue to see his cardiologist here so that someone is keeping tabs on it.  On Friday, Sweet Mess will get his 2 month shots!  What a wonderful weekend we will have. 

Well I am going to wrap this up, the toothpicks holding my eyes open are starting to draw blood, ha!  But....let us not forget what we else we have in store for this weekend ~ LSU vs Alabama, No 1 vs No 2, the best game of the regular season and some might say of the entire season!

 

GEAUX TIGERS!!!!!

Questions, Answers and More Questions....

I am extremely sorry that this is very tardy but I have just been so busy that I haven't managed the 5 minutes to collect my thoughts to blog.  Monday was a typical day at TCH...a total of 7 hours!  We started with the sedation and Sweet Mess had the drunk drugs.  He didn't seem to like being inebriated, which I will remind him of when he is older.  It lasted just enough for the ECHO and then he stayed groggy for the rest of the day and night.  Lucky thing was very well rested when he woke up yesterday morning!  The fellow that we saw on Monday was the same one that Dr. K spoke with on Thursday so it was nice that he was "aware" of the situation.  When it comes to Steven's heart, we are all good!!!!  They do not care to see us again until Feb.  We are more than thrilled about that.  Prayers have been answered!!!  After meeting with cardiology we had to go have blood work and a renal ultrasound to check out his kidneys.  The concern is if the kidneys are not functioning properly then they can cause hypertension.  (By the way, his blood pressure seems to be getting under control with the new medication it was in the upper 90's low 100's)  The cardiologist spoke with the nephrologist and we will continue with the bp medication as we are until Steven can be evaluated by them.  So when we left we were not sure about anything other than the heart looks great!  However yesterday morning I rec'd a phone call from the cardiologist and the lab work looks great and the ultrasound showed no issues with the kidneys.  Of course, that called for the happy dance but we still need to find out what is causing the high bp.  Is the heart still not aware that it is fixed?  Is it genetic?  Is it something with the kidneys that is so small that the ultrasound doesn't pick it up?  We will just have to wait and see.  I will be calling the renal care today to make the appointment.  I also have to take Steven for some more lab because although we were at TCH for 7 hours the lab work was not complete for the order so we need to go have some more done.  Needless to say we are relieved that the kidneys look good but we are very confused about what could be causing the hypertension.  I am pretty sure that we will not have an answer for awhile.  The number of pediatric nephrologist is very low so it might be a month or two or three or...before we get in.  I pray that there will be an opening within the next month or two so that we can try and get this resolved. 

Well I better go get ready for work so that Miller is not embarrassed by me when I drop him off for school.  Yesterday I decided to sleep in and drop him off then come home and get ready.  He looked at me and said "I cannot give you a hug or a kiss if you are wearing that."  Really?  I do not get out of the car, I drop him off???  And NO I was not wearing pj's, I was in shorts and a tshirt!  But it is alright, I will be getting to work early for awhile.  My dear sweet "work friend", Sherry has taken another job and yesterday was her last day.  I hope that she loves her new job but I am sad that she will not be working with me.  We have had 10 years of friendship which will not end but it will stink not to see her everyday.  Good Luck Sherry!!!!  Needless to say, I am going to be "Sherry" for awhile and me and "Ben" until he gets back on Monday.  Wish me luck!!!

Have a wonderful Wednesday everyone!!!!

I Am Special Plate, Will Be Used!! :-)

I must start off with some thank you's!  I received so many responses from my last update and I needed them.  There will never be enough times that I say, what a wonderful support group we have and how very blessed we are.  I pray that you never know what it feels like to need hundreds of prayers and well wishes for a long duration but when you are in that position like we are, it is an incredible feeling to know that you are receiving them.  THANK YOU!!!!

We are extremely concerned about the possibility of Steven having kidney issues.  His blood pressure was 112 over 66 yesterday and although it was certainly lower than the day before it was not as low as we were hoping.  It was exactly 3 hours from the new medicine and 30 minutes after his regular one so it was "prime time" and even then it was still high.  Now, I am a bright side of things kinda girl and it is lower and after a couple of doses of the new mixed with the regular one, hopefully it will continue a downward trend.  Dr.K was hoping not to have to put him on the medicine but his blood work showed some high levels of different things and it was necessary.  One of the things was his potassium level and what is crazy about it being high, the potassium should be LOW as a result of his Lasek.  Dr. K notified TCH and hopefully when we get there on Monday they will have us someone to consult with.  I have all the confidence in Dr. K and whatever he says we need to do we will listen and do.  Please pray that we will have someone to consult with about the kidneys and that no lasting damage has taken place and that the bp will continue to go down. 

On to some great news, The Kindergartner made all A's his first 9 weeks!!!!  That little boy has given us something to smile about.  The I am special plate is going to be getting used!!  We are very proud of Miller for doing so well in school with the disruptions to his schedule.  I pray that he continues to keep up the good work and continue to learn and enjoy it!

To close this today, I am going to ask that you all pray for a little girl named Quinn.  She had surgery at TCH the week after Sweet Mess.  From reading her mom's blog Quinn's recovery has not been as comfortable as Steven's has.  She is currently in surgery again to repair a leak to the patch, which has caused some other problems.  She has been in constant discomfort since her surgery and her personality has not quite returned.  I really cannot imagine what her parents must be going through.  Steven started showing signs of himself before we left the hospital and only continued to be "him" more and more everyday.  But to not see all of him return would just devastate me.  Quinn is older and so I can only imagine that it is even more difficult for her parents.  I am praying that the surgery is successful and her personality starts to return as the discomfort begins to fade.  

But let me not forget....Geaux LSU!!! 

I Want A Mulligan!

I want a do over for the entire day!  Today did not go as I had planned.  Sweet Mess had his appointment with Dr. K, our cardiologist here and his blood pressure is still too high.  Today it was 135!  Remember upper 80's to low 90's is where it should be.  Dr. K sent us to have lab work done and has called out another medication to help control it.  Steven was not really crying or anything when the bp was checked so it is a huge concern.  The only "comforting" thought is that the time of day that it was checked was just before his dose of bp med so that means that it was basically out of his system and so I hope that it isn't always THAT high.  He also wants him to see a nephrologist, kidney specialist, to make sure there is not anything wrong with the kidneys.  We have had a VCUG (an xray to check the flow in the kidneys) and we have seen a urologist and everything looked good.  But Dr. K pointed out that prior to surgery Steven's bp was never this high and maybe the kidneys suffered some during the bypass from surgery.  Needless to say, he was making phone calls to see if on Monday when we go to TCH if we can also get in with a nephrologist.  High bp can cause kidney disease as well so we need to get in as soon as possible.  I am not sure if this is making sense because as usual I was by myself and I really can't remember everything.  It all gets a little fuzzy  after 135!  I can always have someone come with me and David normally does if it is a new doctor or major appointment but I thought today was going to be a little social visit and check up!  I do know that one really positive shocking thing was that someone weighs 14 pounds...look out you heavy weights, someone is moving on up!  But his weight cannot take away my worry and concern about his bp and now his kidneys.  I am emotional and just tired!  I want our sweet mess to be well, I want to leave an appointment feeling positive and not worried, overwhelmed and scared!  I remember the first appt with the pediatrician when she mentioned a big or bad murmur and I could sense the urgency in getting him to the cardiologist.  Well today I had the same feeling but instead it is for a nephrologist.  I am so thankful for Dr. K and his staff for their approach of addressing a concern.  I understand the wait and see but I prefer the proactive!

In addition to all that, Miller has strep throat.  At the end of the day yesterday school called and so his dad picked him and got him into the doctor.  Miller even took the shot over the medicine because he wanted to go to school today.  He also stayed with his dad and Lara an extra day because he didn't want to get Steven sick.  He is such a sweet boy...when did he get so big?  I feel like I have only seen him for just a few days in several months and I feel so bad for that.  We are very thankful for all the help from his dad and Lara.  It is good that when he cannot be home, he is still at one of his homes!  :-)

Although today really was a discouraging one, I was very happy to have my mom come over for the evening.  It was just a nice night with mimi!  She helped Miller with his homework, she and I got to visit and she brought prizes for us all.  Nick's boudin/boudain for us and light up cars and books for Miller.  With or without Nick's, I am just glad that she was here, especially today!!!  Thanks Mom!

Well it is almost medicine time and I am ready to try and get some sleep!  But please continue to pray for Steven and his health!  Also, I mentioned earlier this week my boss and her father, well he passed away yesterday morning, so please keep Roxanne and her family in your prayers as well.  Lastly for Miller to get well and hopefully stay well.  He seems to be very prone to strep this time of the year every year!  THANK YOU!!!!!

I hope you all have a great Friday!

A Little About This & A Little About That!

First thing, someone slept the entire night!!!!  Any guesses?  Sweet Mess did not wake up until 4:45.  Do you know how happy I was that it was on my shift?  I hope he sleeps the same way for his daddy tonight.  He was sleeping all night before surgery but he would awake around 4 in the morning and I was ok with that.  However after surgery, he was waking up at 3 every night/morning.  We really cannot cannot complain, he has never been one to wake up several times a night.  But it is still nice to think that maybe we are working toward a more normal sleep pattern!!!  Happy Dance!

Stop the dance, I was served papers yesterday for a civil suit by our neighbor.  Yep, I am a defendant.  Those are words that I never expected to type/speak! Luckily she has included my insurance company so I will not be going alone to SWLA's version of Judge Judy!  It all started after the first of the year when she told David that our tree was dead.  Well on Superbowl Sunday, (does it surprise you that I know the date by a sporting event) a storm blew threw and it blew a branch in her greenhouse.  Needless to say, after she caught me off guard and I told her who my insurance was with, she filed a claim.  Who knew that someone else can file a claim without telling you?  Note to self, never tell who your company is because they can.  While the insurance company and her son negotiated back and forth we had the tree cut down.  Note to self, budget more than $1500 for a tree to be cut down...closer to $3000, you can thank me later :-)  While the tree was being cut, Ms. Not So Nice asked the tree cutters for the branches for firewood.  I would have never agreed to this because we paid to CUT and HAUL, instead they dropped into her yard so that she can have firewood.  In the meantime the insurance company made her an offer and she said no and they said...DENIED!  And now I am heading to Judge Judy.  There are several more humorous details to this...she was planning on selling the plants to offset income and now she claims that they were plants from loved ones funerals, she also claims that when she asked the tree cutters for the branches that she said it was for firewood but all along it was to prove that the tree was rotten, if this was true does she really need an entire carport full of rotten firewood???...and I could keep going on but my opinion it was an act of God and she is looking for some extra Christmas cash.  I am looking to see the cost of running the privacy fence all the way to the road :-)  As I am making light of this, I really just do not have the time to deal with her!!!!  But I guess I am so stayed tuned!

I am hoping to take Steven to get his bp checked tomorrow but it will all depend on Miller.  He is at his Dad's for tonight and he said that he wasn't feeling well today.  This is not good news!  I feel like I still have a few shards of glass in my throat and to hear that he might be falling sick too really worries me.  I am hoping that it is all just due to the weather.  A momma can dream.  However if he is feeling bad tomorrow, then I will try and get both of them into to the Dr's office.  I am praying that in the morning he is feeling much better.  We are a man short in the office currently and we were another person short today and most likely will be for the next couple of days so I really cannot afford to be out. 

Speaking of being short a person, please pray for my boss as her dad is not doing well and is not expected to be with us much longer.  He fell about a month ago and his hip broke.  Sadly, his recovery is not what was expected.  She has "taken" care of her daddy for years and this has really hit her hard.  My heart is very heavy for her tonight. 

Well I think that is about it for today.  Hope that you all have a great hump day tomorrow and enjoy this FREEZING weather.  I am never a huge fan of the cold so I have to be dramatic about the current temps!

Weekly Wrap Up

What a weekend!  I have not been feeling well, in fact I think I must have swallowed some shards of glass.  Nothing like trying not to love on a sweet baby boy for an entire weekend.  I think I have been successful and I am pretty sure what I have is allergy related.  But I hate thinking that I am exposing him to something.  I do not want to make a trip to any doctor that is not for follow up reasons!!!!  We did have an appointment this week with the pediatrician and it went well.  Little man is quickly becoming a sack of tators!  He is over 12lbs.  While we were there, I asked them to check his blood pressure and it was in the upper 90's.  I was pleased with that at least we are seeing some improvement.  The good thing is that she wrote out an order for me to drop in this week to have it checked again whenever it is convenient.  I am so thankful for that, I have no way of checking on my own so to be able to go whenever is great.  This week we also have an appointment with our cardiologist here.  I will be so grateful to walk through those doors.  It will feel like home.  TCH is an incredible hospital with many great physicians and nurses but I like to see the same people every time I go.  We get that here.  Same doctors, same staff and I like it!  This should just be a routine visit, echo, ekg and maybe x-rays just for him to see where we are. 

Steven has been doing really well.  He shows very few signs of discomfort unless he has a attack of the hiccups!  Sweet mess is not a fan of them and he gets them all the time.  It is such a pitiful cry too.  He occasionally is fussy but who knows if that is due to his chest being in pain or just because he is a baby.  But those times are pretty rare and a bottle usually fixes it so we are good. 

Miller has been such a character lately.  Very independent and very funny.  He has no clue about his humor most of the time and that is fine by me.  The things that come out of his mouth.  He still has a mild case of Last Word Syndrome but it is getting better.  His first report card should be coming home soon as the end of the first 9 weeks was this past week so hopefully we will be busting out the I Am Special plate.  I have had it for years but always forget about it.  I really hope to dust it off this week.  Ok, yes I will do more than just dust it, I will wash it.  I also hope to be sharing some pictures this week of a scarecrow made by Miller and David.  It was supposed to be a weekend project but it didn't happen.  Fingers crossed that it will be a week day project!

I wish I had a picture from Friday night.  After David got home and showered  he put on a camo tshirt.  Well within 5 minutes Miller was putting on his camo shirt because he loves to be like David.  While I was busy searching Pinterest, the most addictive website ever, they were in the living room playing Big Buck Hunter.  I kept thinking it is good that they are not up in a blind somewhere because Miller does not have it in him to stay quiet. I think Miller will need many lessons before he is ever allowed to hunt, but he sure knows how to dress for the occasion!  Saturday afternoon was a first in our house.  Miller walked outside with a football and wanted David to play.  I was shocked.  Miller usually dislikes the game, he will ask which team you are pulling for just so he can pull for the opposite one.  Anyway, they tossed that ball back and forth for a good long time.  Again, it was a great moment that I wish I had my camera for.  Of course David was worried that Miller might be bruised up since he catches with his arms instead of his hands!!!  This morning he looked all good but who knows I might get a phone call tomorrow, haha!  As for today, we just watched football.  Very little of anything else.  No camera moments missed today.

Well let me get this wrapped up....LSU TIGERS ARE #1 in the BCS standings!!!!  WOOHOO!!!  Sadly, the Saints did not improve their record today as they lost to the Bucs...that hurts!!!   The Texans also lost another one and well sorry Cowboy fans, you also add another number to the loss column. 
On a happier note, it is nice to see the Rangers back to another World Series!!!  Hopefully this is their year!

Sorry this was so long, anyway here are some pics of the sweet mess and just to let you know, I do have pics of Miller but they include his friends and I am not sure how those friends parents would feel about me posting them. 

Getting Into The Groove...

It has been so nice to be home and getting into the groove of work, school and family time.  How sweet it is.  On Sunday early evening, Steven was laying on me and Miller was snuggled up with David on the couch and I thought this is all I need.  Give me a shack and my family and I will be just fine.  It will be one of those moments that I will always think about as the "Aha" moment for me.  I will try not to get on my soap box but isn't sad that so many people always expect to have more and somehow feel entitled to more but really should be just thankful for what they have.  I watch TV and I see protesters who are mad with people who are making a healthy living for themselves.  Really???  So I should be mad at the doctor and nurses that have taken care of myself and my children because they chose to pursue a field that pays them more than others?  I am thankful for the career path that they chose, I am thankful for their sacrifices that they have made.  I am sure they do not get to spend near the time with their families as I get to spend with mine.  Thank you and send me the bill.  Well me and my insurance company!  I also do not understand so many people who are ill with a case of Monday thru Thursday Itis every week...if you do not know what I am talking about check out most Facebook status updates starting on Monday morning.  I am thankful for my job and I enjoy it.  Yes I am tired, trust me I am VERY tired!  Yes, I wish I could have longer weekends to spend with my family but I am providing for them, if not I would not be able to pay the bills.  It is a cycle and a need but it is also life.  If you cannot afford to stay home then stop complaining and if you can afford to stay home, then do just that.  Someone protesting could use the job!  :-)  I guess I got on the soapbox but it is so hard for me to see people who are wanting handouts and people who are not grateful.  I am so thankful for the cycle we call life and I am grateful for so much and I think that if most people stopped to take a true look around they would see they have no right to a pity party.  And yes, I feel like I can say just that...and I try my hardest not to have one.  I am thankful for everything God has blessed me with and I am thankful for everything that he has blessed others with. 

Now, if I still have anyone reading this...this evening was incredible.  We started with homework that is not too much fun but is necessary.  Oh, how I wish I could understand how all of these assignments are supposed to come together.  But right now, we will just keep on keeping on and maybe it will click together and it will make sense to me.  After homework we carved our first pumpkin of the season.  I love a good ol' classic face.  Something I can do freehand and fast...it is a school night after all.  Then to conclude our evening, I made him some bath paints with shaving cream and food coloring.  It was a hit.  He painted and made "patterns" all over the shower walls but he enjoyed washing it off just as much.  So he had fun and he cleaned up afterwards.  I think I call the new bath paints a HUGE success!!!! 

One last little thing, Steven had a doctor's appointment today with the pediatrician.  His blood pressure was in the high 90's which is high but not as high so I will continue to pray that it continues to come down.  I will bring him back in one day next week just so that we can keep an eye on it.   I am so thankful that she is letting me do that.  We are also going to get our flu shots their as a family.  This way Miller doesn't think that he is the only one who has to get one!!! 

Well, short sports wrap...Saints are still have a good record but they didn't look too good on Sunday.  The Rangers need to find some bats that will start making contact as tonight's game is not looking like it will go their way.

A Family of Four!

I-10 East bound never felt so good as it did yesterday.  It was a long day but we did get the clear to come home.  Sorta!  The nurse practitioner said that we could go home but there is still a concern about the sweet mess and his blood pressure!  Obviously if she felt that it wasn't a good idea for him to come home then we wouldn't have but since we do have a cardiologist here she gave the green light.  So, that leads me to his blood pressure...on the 4th attempt the machine had a successful reading.  Sweet mess is no longer a fan of the blood pressure cuff, not sure if he ever was a fan.  He screamed and he cried and that machine was just on shut down.  The reading was 117 / 76...not too good but there is a good chance it was not accurate because of how upset he was.  Poor baby is on a pretty hefty dose of bp medicine and it saddens me that it might not be working.  We will address it again at our next TCH cardiologist appointment on the 24th.  My prayers are that our gracious God continues to heal our sweet mess. 

As I drove home yesterday I think I had an emotional release and unfortunately I do not think it has ended.  I am not sure why I am so emotional NOW!?!?!  I pulled into the driveway and the tears started:  happy to be home, happy to see David and Miller, sad that I was so exhausted, and worried about his overall health.  Do we need to go back and start the other appointments that we canceled because the heart was a priority?  Mentally drained.  I woke up this morning and I still had the same feelings.  I think a good night and day of sleep should help. 

Of course there was no sleeping today....HOW ABOUT THOSE TIGERS????  I need a new hobby, huh?  :-)  Does baseball count?  I love me some October baseball.  I am pulling for the Rangers all the way, while it is under a rain delay let me go back to college football.  My sympathy goes out to all the UT fans, just think it could be worse - be thankful it is not them joining the SEC because then the wins might not be in the forseeable future!  I do not think that there are many A&M fans looking forward to their new schedule.  Well we are back from the rain delay so until next time.  Happy Weekend!

Thursday's Thoughts!

To say that I am a little excited for tomorrow is a huge understatement.  I would be doing cartwheels to express my excitement but the fear of broken bones is holding me back.  Tomorrow is the day that we go back for post op and then we are heading home.  So please everyone be extra careful on the road tomorrow I do not want to be delayed due to any wrecks I-10 East bound!  Thanking you in advance :-)  Our appointment should be a relatively quick one from what I was told.  Hopefully sutures will come out with little discomfort but I plan on giving him a shot of ibuprofen before the appointment.  I am extremely anxious to find out how much the sweet mess is weighing these days.  Every 4 hours he must have 5 ounces or it is temper tantrum with tears.  Music to my ears!!!  I hope his blood pressure is also in check...I am praying that it is, as that is my one real concern.  I long for the day that the alarm on my cell phone is not going off for his medication schedule and I know that it will but right now I just want to make sure the medication is working.  After tomorrow we will have one other follow up appointment at TCH and then fingers crossed we can return to our cardiologist back home. 

Another important event taking place tomorrow is a fundraiser in the SWLA area for the American Heart Association.  I am so upset that we will not be in town at lunch time but for any of my SWLA people reading this, OCharley's is donating a portion of tomorrows lunch proceeds to the AHA servicing the Lake Area.  A former KPLC employee's son was born with the same congenital heart defect as Steven and her son also had to have surgery at 3 months, while her and husband were going thru their "adventure" they decided that when everything settled down that they were going to get involved and bring awareness to AHA and this is one of the events they are participating in.  So if you do not have any lunch plans tomorrow I suggest OCharley's, take out counts too.  You can check out the KPLC website (Sunrise section) and locate the video for more information.

I also wanted to mention that I didn't mean to offend any Cowboy fans from my last blog.  I was only speaking the truth!  :-)  Just be thankful that this is their by week and I will not mention anything about them.  However, their next game is away in New England...best of luck!  FYI, Angela this was mainly for you!  Haha

Well I am going to wrap this up now, I will update tomorrow once we get home.  Happy Friday to everyone, OCharley's for lunch for SWLA peeps and it is never too early for a LSU shout out!

For all the gator fans, you do know what happens to gators in Louisiana, right? 

Long Time No Blog

What can I say, I am a bad blogger!  I can't remember the last blog that I wrote so I am just giving a quick update of what has been going on.  Well it might not be quick, it might be long winded but here goes...

Since Miller was not able to come see us this weekend David and I had a little date on Saturday night while Mom and Dad watched Steven.  It was a really nice night out.  It was my first time out of the house since Tuesday, a bad case of cabin fever was starting to set in.  Date night came just in time before I began to climb the walls!  As thankful as I am to have the house here in Katy, it is just not home.

Once Sunday rolled around David and I loaded up and headed east.  Mom stayed Sunday and Monday night here in Katy so that David and I could both go home for a couple of days.  We drove straight in to pick up Miller (side note: I am pretty sure he grew a foot in a week) who was possibly as excited to see us as we were to see him.  He was such a sweet boy and asked about brother and when we were all going to be home.  He words to God's ears!  I cannot wait to have our family under one roof.  I cried leaving Steven on Sunday morning and then cried driving out of the school parking lot after dropping Miller off on Monday morning.  Emotional roller coaster that we have called life for a couple of weeks hopefully will come to an end on Friday.  When I start to have my pity parties, which seem to be a little too many recently, I just think about the other kids who cannot even go to a temporary home and reprimand myself.  Yes, at times I can hold a pretty good conversation with myself :-)!  See mention of cabin fever above, haha!

Now let me tell you about another reason that I should be ashamed of my pity parties...Sweet Mess is eating and eating and eating!  I am scared that when we go for his post op check up that he is going to weigh in at 15lbs!  I am joking, sorta...he is eating cereal and guzzling down some 5oz bottles like he might not be able to eat tomorrow.  Maybe he is scared that his repair patch is only good for two weeks or so.  David and I are so happy to see him eat like he cannot get enough.  I hope there is no limit to the amount he should gain in the 2 weeks post surgery.  But I am just thankful that he will be the only one on a scale because I have been eating like I am on a vacation.  Such is life when living with a parent again.  Dad has spoiled me rotten.  Let me be clear before Wesley or Brian chime in, I have always been spoiled rotten as I am the baby and the only girl.  We were all spoiled but maybe I have been just a little more than my wonderful older brothers. 

Speaking of my brothers, it brings me to something I just need to mention.  David and I are so thankful for our family.  Our brothers, our parents, our grandparents, our aunts and uncles, our cousins and our friends that we consider family are the greatest and kindest people in the world.  I know that we might not see or talk to you all the time but it has been wonderful to see and/or hear from you all through out this ordeal.  Each and everyone of you have helped us through this rough time in your own way.  It is not without notice and we will never be able to thank you enough.  Some might say, this is when you find out who the "true" friends / family are....make no mistake we have and we know who cares about Steven, Miller, David, and myself.  THANK YOU!

So I guess I need to wrap this up because I am sure that I have put many of you to sleep...thanks again for reading, praying, keeping up with us during our adventure and not mentioning the numerous misspelled words, use of words or all out grammatical sins that I commit! 

Wait, cannot forget the Sports Wrap....in case you didn't know, LSU is 5-0, Saints are 3-1 and so are the Texans (since they have played and lost to the Saints, I can cheer for them again)!  For all of those who are Dallas Cowboy fans, well I am sorry...sorta, haha!  And how about the Texas Rangers moving on to the ALCS, who will join them????

Happy To Be "Home"

Ok, so we are not home but it is the closest thing to it.  We are settled in and trying to find our groove.  But if I am being totally honest, I am not feeling very groovy.  David returned home yesterday after we got things unloaded here.  No reason for both of us to be sitting around until our follow up appointment.  Speaking of the appointment, it is later than we were anticipating...we will not be going for our follow up until the end of next week.  This is mainly due to the chest tubes being removed a little later than normal and the sutures not ready to be taken out.  Just a little delay, right?  I am trying to pump myself up, can you tell?  I also talked with Miller's dad and we will not be getting Miller this weekend.  Miller's little sister is having her birthday party this weekend and this is her first birthday so he will stay there for the weekend.  If my plans work out, David and I will get to see him some on Sunday.  We are very thankful for how cooperative Miller's Dad and his Lala have been, I haven't had to worry about who is picking him up or where he is staying.  I miss him something terrible but he probably isn't missing me too much :-)  As for Steven, well sweet mess is starting to be more himself everyday.  There are times through out the night and day where I am not sure what is wrong.  Is it surgery related or is it typical 3 month old related???  Then there is the medicine again.  Oh how I despise thee!  I have reset all alarms and doing my best to wake up, I am trying to alter them as well so that I am not giving him dosages at 12 and 1 am.  I hope that when we go for his follow up we will see some improvement in his blood pressure.  Through out the entire stay his blood pressure was in the 80's only once.  It was in the 90's some but seem to stay between 100-115 most of the time.  I am praying that the hypertension will be corrected with the medication and hopefully soon even that will not be needed.  I don't mind giving it to him but I am just concerned about the amount that we are giving him.  There is nothing worse than when your baby has something that you cannot check to make sure things are good.  If he had a fever, I would give him some Tylenol and check his temp.  I do not have a blood pressure machine for a child, although I did keep his cute little bp cuff!  But I have to share that I am so very sad that I was not camera ready earlier today.  While I was feeding him, he had a little gas.  Well, Dad and I got so tickled that we were laughing pretty hard and sweet mess busted out with this huge smile.  All open mouth and squinty eyes..it was the biggest smile I have ever seen from him.  I was hoping for a giggle but we will take that smile.  It was as if he was excited that he made us laugh.  I think we might have a comedian on our hands.  Well little comedian is starting to stir and I am not ready for the night.  So off to bottles and meds I go!  I hope you all have a great Thursday, the weekend is right around the corner!  Umm, tomorrow is Thursday, right?  haha!

Getting ready to breakout of this joint!

Tomorrow is our lucky day!  We will be busting out of here sometime tomorrow.  I have to tell you I am not going to miss this place.  Everyone has been wonderful, well almost everyone but our next temporary home is much better.  Steven and I will be staying at my parents house in Katy until our follow up visit.  We are not sure when that visit will be and will not find out until the morning but staying at Dad's sure beats staying here. David will go back sometime tomorrow and then come back with Miller for the weekend.  I long to be a family again and all sleep under the same roof, this is just hard.  I am not cut out to be away from my family.  I have a new appreciation for military families, not that I didn't before but just being away from Miller is enough to make me terribly sad.  This week it will be both Miller and David.  Yucky!  It is just a reminder for us to appreciate what we have and that we will be together soon, compared to some in this hospital who will not be home for long time.  My heart is very heavy for others that are here.  A young 16 year old who had a transplant at 2 and now it is starting to fail.  They are reviewing their options to see what else can be done, possibly even the mechanical / artificial heart.  Can you imagine how his sweet mom must feel?  I cannot and yet she continued to check on us because he was worried about the "baby" and how Steven was doing.  Really?  What a thoughtful and kind young man that his mom is and deserves to be very proud of.  I also realize that as we are leaving others are just starting this adventure of surgery and recovery.  Please pray for them all.  I do not think that I will ever say another prayer that doesn't include the 18th and 15th floors of this hospital!  It is the best way to help them, but I am sure that I will not stop at the prayers.  I will participate in itsmyheart.org walks and volunteer if I can, I will see if we can cook and serve food to the families on the 17th waiting area, and I will continue to drop change in RMH coin slots.  I am sure there will be other ways and I will try.  My heart is full and heavy all at the same time.  What an experience...

On a side note, does anyone else want to know how you put a baby who has had open heart surgery in a car seat???  The exact same way that you did before he had open heart surgery.  Yep, it makes sense when it is coming from someone in scrubs!  You allow the car seat to do the job to protect the child.  If something bad happens, the chest area can be "repaired" so you never take the risk that something else could go wrong.  Told you it makes sense!

Lastly, I want everyone to know that Miller loves hotels.  No need to take him anywhere just bring him to a hotel.  He thought he was king!   Of course, we did kind of treat him like one.  He also loves Vanilla Bean Fraps from Starbucks, my sunshine gets that from me!  We had a wonderful but brief time with him.  I hated to see him leave, hopefully the week will fly by!

I know that I am posting two of the "same" pictures but this is my future...I hope that when Steven is 5, I can get a picture of everyone looking at the camera and smiling.  And no "fake" smiles!

But now this is a REAL smile...he must be smiling because we are going home tomorrow and McNeese, LSU and the Saints won this weekend!  Did you really think I could get through the post without mentioning football???



Photo Post

This will be a post of pictures...

Steven before surgery, a special smile time with us!

And the wait begins, we are so thankful for our family and friends that were able to be with us during this very long day...

You can never prepare yourself for what your baby or loved one will look like once you are able to see them out of surgery, but I expected worse!

Wednesday after they had to put the breathing tube back in...

Thursday is the first time we were able to feed him because the breathing tube was removed successfully!

And by Thursday evening most everything was out except for a couple of things...

Early Friday morning was the first time we could hold him...but I do not think that he was ready just yet.

By Friday at noon everything including the central line was removed and we were ready and waiting for our room...

It was so nice to be in the room and for everyone to be able to visit at the same time...

Saturday was even better, Steven began sharing his smiles again and it was just so nice to feel like our baby was back!  Watching him sleep so peacefully is something I have missed this week!



Can you believe the progress from Tuesday until today?  It is amazing to me.  Our sweet mess had open heart surgery this week and he is starting to act like nothing ever happened!  I am still not sure when we will be getting out of here.  I think at the very latest it will be Monday but I would be more than willing to be discharged tomorrow.  Steven's blood pressure has been in the low 100's upper 90's so that is much better than where we were yesterday morning...loving the progress.  We are so blessed and thankful for the prayers and you can tell by the pictures that prayers have been heard and answered!!!!

Moving On Down...

I know, I know it is supposed to be "moving on up" but in our case we are more excited to be moving on down!  We are in a room and we get to hold our boy!!  I held him this morning briefly but it was not comfortable for him.  But this afternoon it was a different story, holding him has never felt so good!  Yep a ROOM...with a pull out bed, a private bath, and without a nurse.  A nurse is there, just not RIGHT there.  And our sweet mess is being his sweet self again.  He had a rough morning but this afternoon he was smiling and "talking" and playing.  What a wonderful sight!  Then, big brother arrived!  Another wonderful sight...I could have tackled him I was so excited!  It is so great to have him here.  He had a fabulous picture of a duck for his brother that we quickly hung on his crib.  He is such a sweet boy, even if he has last word syndrome.  Because Miller is here and Steven is doing so well, David and I are spending the night with Miller while David's mom stays with Steven.  So do you know what that means...I plan on SLEEPING tonight!  And I plan on getting started right now.  I will update the blog tomorrow and I will share pictures of Steven from the week.  It is amazing to see the progress from Tuesday to now!!!

A Special Day

So tonight I am taking a shift for a couple of hours by myself and Steven is sleeping, which leaves me with the computer and a venti pumpkin spice.  This is what you might call armed and dangerous for me.  We have had a wonderful day full of progress, it is so difficult to have him look at us with such a sad look but most of his discomfort and frustration came from having things removed.  The only thing left of real significance is the central line and that should be removed before we get moved to a room, which will be tomorrow if all continues to go well.  The doctor's have been playing a balancing act when it comes to his blood pressure as it has been high for most of the day.  It is currently under control but this is just the second time today that it is where it should be.  This is the only thing that might hold us back from getting moved to a room tomorrow.  He was on blood pressure medicine before surgery so it is no surprise that it is difficult to have it stay normal so soon after surgery.  We were warned in advance that he might still go home on one if not both of his medications and it looks like it will be both.  It will not be long term, just until his heart gets acclimated to the closure and realizes that it can relax some.  Hopefully no longer than a month.   But a little medicine for a month or even two cannot take away of all the improvements and progress that he has made today.  We are a very happy family.  Tomorrow only looks to be better, with the possibility of a room and a visit from Miller...I am so excited.  This has been a long week away from Miller and our stay in CVICU has just been tiring.  There are wonderful nurses here but it is exhausting.  Can I have a bed please???  This is not a place for comfort.  Two "office" chairs does not create a relaxing setting for a night full of sitting.  I am not asking for Lazy Boys but I think the floor might be more comfortable, just don't care to sit on the floor in a hospital.  :-)  And here are a few things that I have figured out / learned from our stay here so far. 

1. If you plan on parking your car in the garage for the day, you might as well valet.

2. Flip flops are not an ideal shoe to wear in a hospital.  If you cannot stand to have cold feet and plan on wearing flip flops, bring a pair of socks.

3. Taking turns having someone else sit with your child is wonderful, utilize your resources...aka grandparents!

4. Food court closes at 6, McDonalds is open until 3 am and reopens at 5, I did lose a bet on this, and the most important Starbucks closes at 10:30 M-F and at 9 on Sat and Sun.

5. I will forever drop some change in the coin donation slot at any and every McDonald's I visit to support the Ronald McDonald House, what an incredible organization that offers help and comfort to so many.

Well I think this is a long enough post for the evening.  I want to end this by saying that today is Steven's birthday, not our Steven but David's brother Steven.  Happy Birthday to you and thank you for looking out for our sweet mess from your home in heaven!!!!  I can't wait to meet you!!!

Update #6

We have great news, Steven is off of the breathing tube and has had his chest tubes / drains removed.  This is such wonderful progress, we are so happy.  But let me tell you it is heart breaking to watch him go through this and he cries and looks at us, with a look of please help me!  It is so difficult to wipe his tears and hold back our own.  Again we are so pleased with the progress of our sweet mess and he has been so strong that to see him plead with us by his eyes is terribly hard.  I will update more later...

Progress Report

What day of the week is it?  Because I have no idea!  This has been the longest day or days we have ever been through.  It is what I expected yet, not so much.  I plan and map things out.  But you know,  I do not consider how long each road or bridge is.  We planned to be in the CVICU for a couple of days.  But I wasn't really prepared for what all goes on in here.  I was thinking that he would be off the breathing tube within 24 hours.  But he isn't and after seeing what we witnessed this morning, we only want him off of it when he is good and ready.  The anesthesiologist that tried to take it out this morning just stopped by and said that we would try again tonight.  Our nurse also informed us that Steven will start doing test trials so that they can make sure of the good and ready part.  This morning there was only 1 test but today they will do 3 or 4.  That puts us at ease...or at least gives us a little peace that it will not be as rushed as it might have been this morning.  From the info that we are getting removing the tube is really the first step and primary focus of his healing and recuperation.  So prayers that tonight or early in the morning Steven is strong and alert enough to have it removed and keep it removed.

Speaking of prayer, it is amazing to have hundreds of people pray for you.  I hope to never need hundreds of people praying for us ever again but it feels incredible.  I think that it should be overwhelming and I guess it is but the prayers are so welcoming and comforting to us.  I know that a lot of people think that our society of social networking is an overload of sharing and I tend to agree.  But thanks to facebook aka spacebook (that is what my dad calls it) and the blog, a ton of prayers are being said for us from all over...friends, family and total strangers.  It is truly incredible. 

Another incredible thing is the community that is established in this hospital.  All you need is a child with a heart defect to become friends around here. We see the same parents and each extends their prayers, their thoughts and shares a little bit about their situation.  None of our stories start off with great news but we all have hope.  Yesterday there were 5 cases aka surgeries...I think the general number is closer to 3, it was a busy day on floor 17 which is the waiting room.  We are in the first room in CVICU so I have no clue how many kids are up here.  But there is just an understanding in everyone's eyes.  It gives incredible comfort to me, we are not alone.  In fact, the young girl in the same room with Steven, who is 3 from Beaumont and had surgery yesterday was told that she was getting a room today.  I got tears in my eyes, I am so happy for them.  It is nice to know that we are not alone.  Another amazing thing about this place is the staff.  They all just help each other out and you can ask anyone for information and they will explain it to you.  Don't get me wrong, I still don't know what most of the info is but it is nice to be told.  We also had a visitor yesterday that was sporting a lab coat and knew our names but we didn't know him.  That is because my sweet friend Maureen had called her old neighbor, Buck Kyle who is doing his residency here at TCH and asked him to come check on us.  It was so nice of her to contact him and for him to come and check on us and he came by and checked on Steven too.  There is a lot of truth to six degrees of separation.  :-)

Well our sweet mess is starting to squirm so I will update you later on how he is doing.