Home Sweet Home???

So we have been sent home.  Not what we had in mind!  Steven had the echo, ekg, and x-rays done today however there is concern that he might have a double aorta.  Yep, maybe something else in addition to the VSD.  Because none of the images were clear enough to determine if he does or doesn't, they had to schedule an appointment with radiology for a scan.  We will be going back next Tuesday to have the CT scan and then consult with surgeon.  What can I say, our sweet little mess might be a little messier than we thought! ha!  Although we are disappointed that we have been delayed we totally agree with the reason behind it.  We were able to meet with both the cardiologists and the surgeon today.  There is no doubt he will have surgery for the VSD but the idea of going in and not being a 100% clear of his heart and all it's differences would just be a gamble.  As a mom, I am worried about the lack of weight gain because he still isn't gaining.  However the doctor's were not that alarmed that he isn't gaining, they are more curious as to why.  Our cardiologist in LC, had discovered that Steven's heart was not the same "design" as most and we were told that it was not a concern just that it would be important for the surgeon to know.  Today they spent an hour doing an echo to try and get a good view of the aorta but it never happened.  Steven was extremely patient with them (he must get his patience from his daddy) as he slept for most of that hour.  From what I understand a symptom of having a double aorta is not feeding well, which is what they think might be behind his lack of weight gain.  However most of the symptoms and Steven do not match so I am not going to fret over it.  When we asked what it would mean, it was just that it would be something else that needs to be fixed.  We also found out that where he has another opening in his heart the flap that isn't closed also has openings in it.  The doctor described it as swiss cheese.  The list of repairs just keeps getting longer, huh?  I feel so bad for Steven but I have never seen such a good baby.  The only time he fussed, well the only time he showed them his lungs was during the x-ray...he was not a happy camper!  It was very tough for me to have to hold him down for it, how in the world will I survive this surgery????  Well it has been a very long day so I am going to wrap this up.  It is going to be another long week and then we get to try it again.  Hopefully it will be conclusive and we will be able to proceed with the surgery.  The only good thing about it being delayed, we will be able to watch the LSU vs Oregon game at home instead of a hospital room!  Go Tigers!!!  Thank you again for all of your messages, texts and prayers, please keep them coming...I hope we didn't lose any prayers because we are Tiger fans!  :-)

Surgery or No Surgery That Is The Question

Well here we are waiting for the morning to arrive.  We had a wonderful dinner with my dad and David's cousins, it was a great distraction from what might be the most stressful week of our lives.  Of course we might be meeting some doctors tomorrow and going home to wait until they think he is ready.  I will be honest, I will probably be disappointed if they send us home.  It is purely selfish reasons, knowing that the surgery is necessary the waiting is so difficult.   But of course, if the team of doctors here do not feel like it is the right time I would never want them to do it.  I am just exhausted and my personality needs to know when and where.  Like I said it is selfish! 

Speaking of me being selfish...I know that there are so many people reading this and praying for us but I would like to ask that you please keep our parents and family in them as well.  I know that for them it is difficult not being here with us and they are very concerned and worried about Steven.  I know that for our parents they are also very concerned and worried about David and me.  We are so very blessed and thankful to have the family that we do but I want them to not be sad and worried about us. 

Now on to some major thank you's and apologies!  I have received so many wonderful messages, phone calls and text messages but I have responded to very few!  I am so sorry but between trying to stay awake, work, and being a mom, I have failed at being a thankful friend!  Please know that I have read or listened to each one and cannot be more grateful.  Thank you thank you thank you!!!

Well I am exhausted and I am going to try and get some sleep...ha!  I am thankful that Steven doesn't know anything about what is going on.  I love that our sweet mess is young enough that he will not remember any of this!  Just wanted to share how much Steven likes his pj's...

A Little News To Share

Yesterday, after I clicked "publish post" the nice lady from the appointment desk called.  She wanted to let me know that they were still trying to coordinate schedules.  Because our cardiologist wants the surgery to be done as soon as possible, TX Children's is trying to work it out for us to come and stay.  Now, we might get there and they decide that he can stay like he is for a little longer and we will just come back home.  I guess we are still in the "cone" (see previous post). We have canceled all other appointments including the immunizations shots that he was supposed to have this morning.  Just wait and see.  This afternoon she called to let me know that our appointment with a cardiologist is 8:40 Monday morning.  We will meet with Dr. Frazier at some point in the afternoon.  Yep, you read that right, Dr. Frazier so far I think we have our man, aka surgeon!  At that time we will know if surgery will be next week or not.  What a LONG weekend we have ahead of us.  Of course, it could also be a long week.  Back to that lesson in patience.  I want this over with, I want our sweet little mess to not be a mess anymore...but my emotions are still mixed. 

This evening we told Miller that we would be taking Steven to the doctor and that we might be staying so that he could have surgery.  He asked if it was on his heart, what a smart little man!  I explained that he would be staying at his dad's while we were gone and that we might not see him until next weekend.  I think I should be hurt by how ok he was with that, haha!  I hope that I can survive without him for 5 days, I have no doubt he will be just fine without me...just ask him!  I also wanted to let you know that Miller is starting to be like school, I am not sure that he would admit that but I can tell.  Of course he did ask me if he had to go to school in the fall?  Really?  He also told me that his "best buddy" gave him a "purple eye" today.  I left it alone...I wasn't sure what to say to that, but don't worry I do not think the eye is purple or black just a little red. :-)


Well I hope everyone has a good Friday and enjoy your weekend!  I will probably post an update on Sunday, just to calm my nerves.  But I will update on Monday as soon as I know what the doctors say.

PS. Never leave Miller alone with a camera!

Today's Test is of Patience...I FAIL!

If you live in the gulf coast you know what is like when a hurricane is churning out in the gulf and you are in the cone?  You wait and you wait...well that is what today has been like for me.  And I am still waiting!  I haven't heard back from the appointment desk for the hospital and I have left a message.  Some of the information I have read indicates that if your child is scheduled to have immunization shots you need to make sure it is ok to have them.  Well we have a shot appointment in the morning at 8:30.  I guess I will try to reach her again in the morning before we go.  Even if we didn't have shots in the morning I just want to have some information.  It is so difficult for me just to wait and still concentrate on work.  My brain is running 90 mph right now...how are we going to tell Miller that Steven is having surgery?  when should we tell him? how will he handle staying at his dad's for a longer period of time than normal?  who is going to feed the dog?  how bad will Steven look when he comes out of surgery?  how long will our stay really be?  how do you put a 2 month old in a car seat who has had open heart surgery? how do you pack for an indefinite stay?   where exactly is the hospital?  I could go on but you all might really start to get worried about me.  My mind is ALL over the place!  So what is another sleepless night, it will not be the first and I know that it will not be the last. 

Hopefully tomorrow we will have some real news to share!

Only One Ounce :-(

That is what our sweet mess gained in a week.  One Ounce!  He is supposed to gain that every day, not in a week.  We have known that surgery would be a must but not gaining weight makes it even more real and it also creates an urgency to have the surgery.  So as I was typing this I rec'd a call from Texas Children's.  The lady asked that I go ahead and get Steven registered so that we can get moving.  She told me that Dr. Frazier was in surgery so she has not spoken with him to make verify that he will do it.  I am praying he says yes.  I know that it shouldn't matter because if we go to New Orleans or Houston we will be coming HOME with a healthy baby boy and that is all that matters.  It would just be nice to have a home to stay at and family and friends around us while he is in the hospital and when we get out.  But again, Healthy Steven is all we really want!  I will update as soon as I hear something and hopefully it will be today! 

Breathing Treatments, Quick Trip to the ER, and a Beautiful Baptism

What a strange weekend!  Miller came home with a cough and a wheeze on Friday.  I think the heat is the cause of it or at least I hope so.  He coughed all night long, I know this because he slept next to me on the couch.  Miller had decided it was Family Fun night, watch a movie and sleep in the living room.  I agreed and by 1am I knew it was a mistake.  He couldn't sleep and made it so I couldn't either.  I finally convinced him to take a "breathing treat" so that he would fall asleep.  It was only 6 in the morning!  Poor thing is feeling better but still has a small cough but at least it hasn't been ALL day.  David also woke up yesterday not feeling well.  He had a rash of red itchy bumps last week and was diagnosed with poison ivy.  He got a shot and prescription for antibiotics but on Saturday morning he woke up with more bumps and even his lip was swollen.  We decided to take a quick trip to the ER because it didn't look like any poison ivy we had ever seen before.  So two more shots and two more prescriptions and he is finally feeling better, still not sure what he got into but at least it doesn't look like it was a fight with someone's fist!  Our day ended with Steven's baptism.  It was a beautiful ceremony and we are so blessed that so many of our friends and family were able to attend.  Steven did so good!  He never made a sound and only smiled when the water was poured on his head.  He is one sweet little mess!

This week is another busy week for him.  Hopefully we will hear something about the referral to TX Children's. 
Hope everyone has a great week and for all of my Texas family and friends, I hope that the start of the new school year is a good one for your kids!!!!

 

Not Enough Coffee In My Life

I try, I really do!  But mistakes are bound to happen, right? All week I thought Steven had his 2 months shots on Thursday of this week.  Yesterday morning I woke up thinking that I might want to call and confirm.  Sure enough, his appointment is the 25th.  Glad I called and didn't walk in there like a fool.  I think that all of these appointments are starting to get to me.  I even have an appointment book just for him and I still screwed up.  Oh well, no harm!  But last night I fell asleep and didn't give him his medicine.  Not good!  I have my phone set for every dose of medicine, it goes off all day.  It starts at 6am and continues off and on until 11pm.  Thank God for smartphones!  Except that the smartphones cannot actually pinch the user because that is what I need.  I went to bed around 10:30 maybe even 10:45 and fell asleep before 11.  I didn't wake up until 1:30.  I felt so bad and then wondered what to do?  Give him the dose and just start the 8 hours from there?  Skip the dose all together and wait for the next one?  Finally decided to give him the dose at that time and just start a new schedule.  Can someone please tell me how I am supposed to wake up at 1:30am for his dose when I can't wake up 15 minutes into my sleep?  Maybe Starbucks every night will help.  At least he doesn't hold it against me, this morning we still had our smile time.  He is such a morning person, it is the best way to start my day.  I am posting a picture from the other morning...it is just a little smile of what I get every morning.  I hope everyone has a great weekend!  We start our week off with blood work on Monday, cardiology on Tuesday and 2 month shots on Thursday...for real, this time! 

Finally Some Good News!

First let me start off by saying, Thank You for all of your prayers!  I debated about going "public" with Steven's health concerns for a long time, did I want my friends to find out thru Facebook or a blog?  Did I want any negative comments about putting out his story in such a public forum?  Then I finally decided that I would start it because it would be good for me and would anyone really read it???  If a couple of people decided to read it and pray for him then a "few" more prayers were more than worth it.  Let me tell you, it has been more than worth it.  I am so grateful for the kind messages that have been sent, the friends asking for their friends to keep us in their prayers and nobody has yet to mention my poor writing skills and my errors!  What a wonderful experience!  But I do need to apologize if you are one of the people that had not heard about his heart and had to read about it, I am very sorry.  Please do not be mad at me!!!

Now on to the good news!!!  Today was Steven's dr appointment with the urologist.  David was able to come with us to Lafayette for the appointment and I am so thankful.  I do not know my way around Lafayette at all, except for the mall and shopping areas around it :-).  Anyway, this appointment was scheduled following the ultrasound he had a birth that showed one kidney was enlarged and some reflux.  Steven had a VCUG (an x-ray that tracks the urine) at  3 weeks and it showed everything looked good but his pediatrician still wanted us to go the urologist.  Due to some other concerns, Steven had another ultrasound done at 5 weeks and it too came back normal so I felt pretty confident going in today.  Who am I kidding, I was confident and at peace going in because of the hundreds of prayers!  Guess what, they worked.  The dr looked at his ultrasounds, VCUG and a quick examine, then turned to us and said he is all good.  The kidney is no longer enlarged and it was nice to meet us.  I waited to do the happy dance until we got out into the hallway, but rest assured I did it!  One thing that I have learned in all of this is that when you do not have to come back for a follow up, everything is really ALL good.  We were not asked to schedule a follow up!!!  We are so blessed and our prayers are being answered. 

A quick update on kindergarten, things are looking up.  Today is day 3 and Miller's only complaint is the food isn't good and wants to bring his lunch!  Must be bad if a sandwich is better.

Hope everyone has had a good Wednesday like us!!!

EKG, Ultrasound, X-ray, Blood Work All Before Noon

Today was a busy day for Steven.  I took him to his weekly cardiologist appointment and it turned out to be a hectic morning.  As if trying to get Miller to school by 7:40 wasn't stressful enough for me, ha!  It was a good appointment even though he had to endure a lot.  Every week the EKG and ultrasound are done on him.  He doesn't even cry anymore.  This is the second time for the x-ray and he handled that pretty well.  But when it comes to the blood work he could have that every day and not get used to it.  I think he screamed so loud he might have made sedated patients in the hospital wake up!  The blood work was crucial today because the dr needed to see how his little body is handling his medication.  He has two different kinds that he takes several times a day and the dr needed to make sure his body was handling it well before increasing it.  The results were good so now he takes more per dose and 1 more dose a day of another one.  The reason for the medication is to hopefully slow down his breathing some and the other is to flush his lungs of the blood that is being pumped in.  The last couple of weeks I have been worried that Steven was going to become a case study because his symptoms did not match the natural stages of VSD.  Today's visit showed that he is starting to show the progression.  This is good because his body can handle the surgery now.  Another good thing about the visit, a referral to Texas Children's.  We really want to go there for surgery for one reason, the support we will have around us between family and friends.  Steven's cardiologist is fine with us going there as long as one particular surgeon will perform the operation, if he doesn't we will probably end up in New Orleans.  Prayer request of the week, Dr. Frasier (sp?) will perform the surgery!!!!  We hope to have an appointment for a consultation in two weeks.  We do not know what timeline is ahead for Steven with the surgery.  I do know that we are at the max when it comes to us giving him the medication without having to be admitted to the hospital.  I hate the idea of this sweet little boy having open heart surgery at such a young age but if his body can handle it, then let's get it done!  Thanks for reading and thanks for the prayers!

Kindergarten Is Boring...Life According To Miller

First day of school did not go as I expected it to.  Miller was very excited about his first day of school, uniform - check, new shoes - check, endless amount of supplies - check, and watch - check.  He was all set.  His dad was the lucky one to bring him to school on his big day, he walked him to his class and our big boy was excited to be there.  At the end of the day, David was waiting to pick him up and call me with the excited litte boy that his dad had dropped off.  However, David picked up a bored little boy.  Yep, BORING!  That is the word he used to describe his first day of school.  How do I tell the little man that it only gets worse from here and the first day is the "FUN" day?  I have a feeling this is going to be a long year!  But even if he didn't enjoy the day, he sure looked cute!!!

Where to begin?

Well I guess maybe at the beginning...while I was pregnant it was discovered that the baby had only a two vessel cord.  After seeing the specialist, we learned that the results of this could be something or nothing.  However, Steven was growing as he should and everything checked out on the ultrasounds.  But now I am starting to think that Steven has the something.  The day after he was born he had an ultrasound done that showed a little reflux on his kidneys, because of the that we had a one week follow up appointment with his pediatrician.  At that appointment the pediatrician asked me if "they" had told me he had a heart murmur.  To this day I cannot remember if she said "bad or big" but I think she could have said both!  Needless to say, we have now been to the cardiologist every week.  Steven has been diagnosed  with VSD, ventricular septal defect, which is a hole between his lower two chambers.  It is likely that he will have surgery to have it closed.  Not only that, we are making sure that everything else is ok.  That means that we have some other appointments in addition to the cardiologist coming up.  In fact, this week is Tuesday cardiologist, Wednesday urologist, and Thursday pediatrician for 2 month shots.  Oh and Miller starts kindergarten tomorrow.  It is going to be a busy week for us, we are just praying that it goes as smooth as possible.