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.