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.

Update #5 Part 2

The removal did not go as planned.  They removed it however Steven was still too sedated and did not want to breathe on his own.  So, they had to put it back in.  This required them to sedate him again.  Hopefully once he comes out of this sedation, he will be more "awake" to take control. 

Update #5

Good morning!  This is just a quick update on how sweet mess is doing.  He is currently still under sedation however he is starting to come out of it.  The hope is to remove his breathing tube shortly.  In fact, the nurse just took more blood to check and see how his levels are.  This means that if all checks out they will start to remove it.  Woohoo!  It has been a long night, my parents took the first shift and David and I came back at 2.  We will leave once the tube comes out and we make sure that he is ok.  David's parents will come in at that time.  We have been preached to by everyone, doctors, nurses and bossy besties (that I am so blessed to have) to get some sleep, we plan on it once we know he is breathing on his own.  I will update as soon as it comes out. 

Update #4 ---- Steven Is Out Of Surgery!!!

We just spoke w/ Dr. Fraser and everything was a success.  No major surprises other than the holes were a larger than expected but they are taken care of.  I will update more later...

Update #3

Well we just received news that Steven's surgery is almost complete.  They are finishing up with the stitching and will do another echo on him to make sure things are functioning properly.  If so they will take him off the bypass machine.  Prayers that all is working as it should.

Update #2

We just spoke with the nurses and Steven is currently on bypass and they should begin the repair of the VSD shortly.  Hopefully we will have one more visit from the nurses before the surgeon speaks to us.  Halfway done!!!

We Have Our First Update!

Good Morning Everyone!  We were notified around 7 this morning that they would be taking Steven back at 8.  This was earlier than what we expected but whatever works for them.  Thankfully the anesthesiologist was kind enough to take Steven from us and walk him to the OR.  We didn't have to deal with the double doors.  We still had a very difficult time letting him go, but at least we can walk thru other double doors elsewhere and it not trigger the memories of today.  We do have some wonderful memories of him from this morning.  We had the greatest smile time this morning.  Sweet mess was all SMILES!

We did just receive an update from a nurse.  Steven is completely sedated, breathing tube is in and they are finishing up for preparation for the surgery to begin.  We should have the next update in an hour or two.  So far so good!!!  We cannot express our gratitude to everyone for all of the prayers, please keep them coming!

Poked & Prodded, Just What The Doctor Ordered

We made it through pre-op and someone is resting nicely.  Two of us are not resting so nicely, ha!  It was a long day, which seems silly to say considering what tomorrow brings.  Sweet mess was such a sweet boy today, just ask the ladies aka hospital staff.  He has been a little flirt today, everyone had a little piece of smile time today.  I have never seen him like this.  I think if we lived around here we could have some babysitters.  I am being silly but it was pretty funny to watch him show his dimples all day.  Now, don't get me wrong, his lungs got plenty of exercise today too.   The lab work and the IV needle did not go to well.  But he survived and should only have a few bruises to show for it.  Once we were admitted into a room we had some visitors.  In case you do not know I have some of the most incredible best friends a girl could have.   Raveena and Lauri both came by this evening and will be here for us tomorrow.  Yep, two friends from high school and we are still always there for each other.  I am so very fortunate that they are my friends, love you both!!!!  Our parents also arrived tonight and we spent a little time with them.  We are all very anxious and ready for this to be over with.  Tomorrow will be the big day.  We are not sure of our surgery time and that is the only thing that I am not too pleased about.  We spent the morning meeting several people and all were so kind and informative.   However, nobody was able to tell us what time the surgery will be.  When we were scheduled we were told that it would be a later start time than normal.  I think that everyone forgot that.  It really isn't that big of a deal except that Steven's feedings are cut off at midnight which seems a little long if we are not having surgery until noon.  I have questioned everyone and each time they tell me someone else is going to let us know.  Considering it is almost 11 pm, I guess we will not be told tonight.  Speaking of the time...I think it is time I get ready for bed and see if I can try to get some sleep.  Not likely, but I am going to give it a try.  Thank you all for your continued prayers, emails, texts and phone calls.  I will try my best to blog tomorrow as the updates come in.  Thank you for reading, until tomorrow...

What to write about???

I have so many things on my mind but my eyes are not wanting to stay open.  As many of you know, I have a lazy eye and when I get tired it doesn't exactly open.  Well I am scared if I do not get some sleep that eye might go on strike!  haha!  But I do want to update you on a couple of things.  We told Miller bye this morning, so we survived the first step of our emotional week.  We had a great morning with him, church, breakfast and little silly time before I dropped him off to his dad.  Again, all I can say about it is that we survived.  Not easy but I am thankful that we had such a great weekend with him.  By the way, Lion King 3-D gets two thumbs up from each of us.   We arrived in Houston and although we forgot some things at home, the contact that would help me keep the lazy eye open, we didn't leave anything of importance!  We are all settled into the hotel for the week.  I am starting to think that I am crazy or paranoid, but I have checked Steven's forehead a million times today because I feel like he is warm.  I think it has more to do with me not putting him down so he is warm from being in my arms!   But that has not stopped me from praying several times today that he stay feverless.  Tomorrow Steven will have all of his pre-op screens, scans and labs done and he will be admitted tomorrow afternoon.  That will be emotional step 2 for us.  

I know that we are being showered in prayer by so many and I cannot thank you enough.  We are so touched by all of our family and friends who have reached out to us via email, text, facebook or phone calls to let us know that we are in your thoughts and prayers.  It means so much that you have gone out of your way to contact us.  Thank you thank you thank you!

Well I think my "good" eye is also starting to close so until tomorrow.  I hope everyone had a great weekend and that everyone has a great Monday.

Oh and in case you were wondering, we are just as big of fans of the Saints as we are of the Tigers! 

Still Hard To Believe

I guess it is starting to become real.  I have now received a reminder via email of Steven's appointment on Monday and two phone calls.  There is nothing funny about our adventure but the idea that one of the phone calls today started off with "I am calling to remind you of Steven's appointment" just tickled me.  Does someone forget about their child's open heart surgery?  We are not talking about an annual cleaning appointment at the dentist office!  Anyway, between the phone calls and the email the reality is starting to hit home what we are about to go through.  It is oh so scary!  But thankfully all of the wonderful prayers are going to get us through this, right?  So please do not stop!!!!  We are praying right now that all of the cooties continue to stay away.  I am so scared that we will wake up on Sunday morning and he will have a fever or green nasty nose...but our prayers are going to be answered!  I also have a heavy heart about being away from Miller for 5 days.  I cannot imagine what that will be like.  He is my sidekick and David's wing man...it will be a lonely time without him.  We are all looking forward to seeing Lion King 3D this weekend.  This is a reward for two weeks of green stars, but it is really going to be a little family time for the 3 of us.

You know me, I cannot type an entire post without bringing up the Tigers!  Currently winning 6-3 at the start of the 2nd half...Geaux Tigers!!!

Parenting Book, Hamster In The Wheel and A Week From Today!

Has anyone ever read a real parenting book?  If so, are there any chapters that cover last word syndrome?  Our Kindergartner has a bad case of it and I looked it up on Web MD but there isn't any info on a cure so I think I might be looking in the wrong place.  I love that Kindergartner but we need to get this fixed asap!  We all know I have an overdose of stress right now, therefore I am not dealing with LWS very well.  I know that I wasn't a perfect child but I know that I was scared to death of the bar of ivory soap on the bathroom sink.  I can smell it now...or can I taste it now?  However, Miller has no fear.  Maybe he doesn't fear me or fear any action of mine but shouldn't he?  I don't want him to be scared of me but I want him to fear punishment for doing wrong.  I will tell you that I also need to pick my battles or at least my timing.  We had a rough morning before school and I hate that our day started that way.  There is nothing worse that arguing first thing in the morning.  I am just having a hard time getting thru to him and having the patience to stay at it consistently rather than blow up at him.  Parenting is the most difficult job ever!

Of course, I am just having a hard time right now anyway.  I feel like the hamster in the wheel.  From work to home, I just keep running.  At work, my list and stack of files isn't getting any smaller.  I am determined to get everything marked off my list and have every file off of my desk before I leave Friday.  I am thankful for the great WORK FRIENDS that I have because even though I am running on the wheel they will jump on and run with me.  At home, we have so much to prepare for and we haven't really gotten started.  I haven't even made reservations for a hotel yet.  We have just been busy with "life" that to take time to blog has even been hard.  Who knew that carving out time to blog would be difficult?  If it wasn't for the crock pot we wouldn't have had anything to eat the last two days.   I know that this too shall pass, I just cannot wait for it to.  So for everyone that is reading this thinking that what I am typing is your life too, now you know you are not alone!  ha!

Speaking of being alone or not alone, I am so happy that people are reading this blog and finding a sense of relief that they are not alone with their concerns or fears for their children when it comes to heart defects, surgery and the overall experience.  I started this blog for our family and friends to keep up with Steven and Miller but I know that others are reading it and know exactly how I feel because they too are going thru the same experiences with their own infants.  I have said this before and I think that I have typed it too...regardless of who we know that has had successful open heart surgery, this is still open heart surgery on our child.  There is a great fear of sending our baby thru "double doors" for his heart to be put on bypass while a gifted surgeon patches his hole in his tiny heart.  I am thankful that not too many people I know can understand what that fear is...I am also thankful that if this blog is read by others who can understand that fear, then they know they are not alone.  At this time next week we will be past the sending him thru ''double doors" and instead holding a little vigil by his bed while he is in the CVICU.  I wish I could wiggle my nose and be there.  I fear the "double doors" but I will keep praying for strength and peace for these next couple of weeks.  I know that our sweet mess will be just sweet next week. 

You know me, I can't end this without a picture of my sweet mess...here he is with his cousin in their LSU pj's!  Do you understand my analogy of linebacker and kicker??? 

We have a light at the end of the tunnel with a side of vitamin c...

I am sorry that I am just now getting around to posting an update.  We came home late yesterday evening and I was too tired to sit down and collect my thoughts.  We had a very informative day and now have a plan of action.  What a huge relief.  First the CT Scan (Steven was so good, never moved or cried) showed that his aorta is extremely rare but it is a not a double arch.  From what I remember the dr saying, his aorta is different because of the way the branches come off of it.  Most of this is over my head but what was important is that it is rare but is functioning properly so nothing needs to be done about it.  However the scan did show that he might have a small left pulmonary vein.  Compared to the other three pulmonary veins the one on his lower left side is small.  This could be that the other three are enlarged but it would seem that all four would be the same way as they are all serving similar functions.  Now regarding the vein, until the surgery we will not know what, if anything will need to be done about it.  It might even be cause for another surgery later.  On to what is really important to us, as Mom and Dad, Steven's weight...he actually gained some ounces this week.  Hooray for our sweet mess!  All of this to say we are having surgery!  This morning I rec'd the phone call from the "nice lady" at the scheduling desk.  She had already spoken with Dr. Fraser and we are scheduled for Sept. 20 late morning/early afternoon!!!  I am so thankful to have a date, we can see the light!  Of course, a huge concern is Steven's overall health when we go for surgery.  He cannot be sick, no congestion, no fever, no nothing!  Which so far he has never been sick.  But you know how our luck goes...ha!  As Dr. Fraser and his nurse were talking to us, I was thinking "umm...I have a sore throat right now" and of course Miller didn't go to school yesterday because of a horrible cough.  All of this to say, if you come over to our house be prepared to wear a mask, haha!  Not really but I did go buy vitamins for us and for Miller.  I will do whatever we have to so that he will stay well for this surgery.  Thank you all for your continued prayers and support to us and our families!  I will post more information later but I just wanted everyone to know that we are home but that our light at the end of the tunnel is visible!!!!

This was the sweet mess in between appointments yesterday!

 

Manic Monday

What a day!  No doubt today is Monday!  It all started after I dropped off Miller to his dad.  I was cleaning a couple of bottles and realized that Miller's thermos for his lunch kit was in the sink.  So I had to go back and meet him again to give it to him.  Not a big deal but it set up the day to be MONDAY!  We got on the road around 11:30 to come to Houston but we didn't get here until 4:30.  That is because we were almost to the Anahuac/Hankamer exit and I realized that we forgot Steven's medicine.  It is the compound medicine so it cannot be called into a regular pharmacy so we had to turn around. Thankfully David's parents went to the house, picked up the medicine and met us in Orange with it.  Could it get any worse?  Not really but we didn't have any bath linens in our hotel room when I went to take a shower.  Tuesday has to be better, right? 

Speaking of Tuesday, I am extremely nervous.  I am so concerned about how they will keep him still during the CT scan.  I hope that they give him a sedative or give me one because I cannot stand to think of him suffering.  I hope that the scan is conclusive too.  We have to get some answers.  I know that I continue to repeat myself but I cannot focus on anything else.  It is all I think about and mainly all anyone in our family talks about.  But I am prepared to get them when we meet with the surgeon.  I have my questions all written down, I am a mom on a mission.  I pray that at this time tomorrow I will have solid information to share with you.

Well I hope that everyone had a wonderful weekend and for those of you who haven't heard LSU beat Oregon 40 to 27.  David was able to boil crabs and our Saturday couldn't have been any better! 

How cute is the LSU fan???

Appointment Time and Game Time!

Late yesterday afternoon, I finally received a phone call from the "nice lady" and we will be meeting with Dr. Fraser on Tuesday afternoon at 4.  I am so thankful that we will be seeing him.  We will know if Steven has a double aortic arch (DAA) and I do not plan on leaving until we have a course of action.  As I mentioned in previous post, Steven is not eating well or gaining weight.  From what I have read, he should be eating 2.5 ounces per pounds per day.  We are not near that.  On average Steven will eat 16 ounces a day and I could do cartwheels at 18, but that is far off from the 22 he should be consuming.  That really is the most difficult thing for us.  Should I be feeding him cereal?  If he has the DAA generally "solid" foods are a little more difficult to swallow.  He is the 13 percentile for his weight, I mean really, if you know David and me that is just wrong.  I keep saying that he is the kicker on the football team and our sweet nephew Brandt is the linebacker.  I want the little sweet mess to be HUNGRY and
 to get MAD when he finishes his bottle because he wants more.  Hopefully soon!

Speaking of football teams, do you know what today is???  Kickoff for Game Day, SEC football and of course the first LSU game of the season, hello college football.  Are we excited???  You cannot imagine!  How about the TCU vs Baylor game last night?  Go Bears, Sorry Frogs!  It was a great game and it certainly got us excited for the new season of College Football.  It is our favorite time of year.  Since we are dealing with some rain, David is worried about how he can continue with his menu for the day.  Boiling crabs in the rain is not what he was hoping for.  Fingers crossed that the weather will lighten up.  Well, I hope that everyone has a great weekend and that your favorite team wins, unless of course your favorite team is Oregon!  Geaux Tigers!

The Cone...I Really Do Not Like The Cone!

So we are in the cone for tropical depression #13.  I also feel like we are still in the cone with TX Children's.   When we left on Monday, we were told to come back on Tuesday for the CT Scan and that Dr. Fraser would be in surgery that day but he would meet with us that afternoon.  They told us to expect a phone call from his office for our appointment time.  Well as of today, no phone call.  I decided to call the nice lady that had called me last week, of course I only have her number so I didn't have much of a choice.  However when I spoke to her she mentioned that she doesn't really know what is going on and that she would email Dr. Fraser's secretary to see if Tuesday was an option to meet with him.  She also mentioned that although the notes said that Steven needed surgery in the near future that doesn't mean right now.  So....here we are and I feel like it is the cone.  The worst part is that we have a baby that isn't gaining weight.  I mean, what are we supposed to do?  Needless to say, I am praying that the nice lady I spoke with just really doesn't know...I guess we will see come Tuesday!