OM gosh

There has been so much going on online within the CHD facebook and blog communities. I want to scream! It is so irritating to see people try to impose their will on someone else's life. I'm glad I have strong beliefs and just enough gumption to say what I need to say when appropriate. Oh how I wish it were appropriate all the time! LOL, yeah I'm a control freak and I like things my way.

For anyone who doesn't know...Vance has been approved and scheduled for his circumcision. I am elated.  We have waited so long for this. I prayed and cried over them not letting him have it done.  It's funny how Vu and I's ideas are so different sometimes, but others so in sync/  We both feel very strongly about this as a religious belief. Baptism and circumcision are the only two things we have stood firm on that we felt needed to be done for Vance.  We weren't sure about heart surgery, but never questioned circumcision.

  I've read comments recently that say that is wrong.  How could a mother think of a child's foreskin before his broken heart and all I can say to that is this, when you walk a mile in my shoes, live through the pain I've lived though over a child, then you can tell me what to think.  Until then, just keep guessing at what goes though someone else's head!

I see this a a symbol of God's chosen.  I spent my time defending my belief on FB so I won't rehash my entire arguement here, but I will say, if Christ had it done, why not my son??

I just think, I wouldn't even be having this convo if my son didn't have a CHD. It would have been done quietly at birth, no fanfair no drama.  So would I have missed out on the debate?  missed my chance to say I do it for God?  Maybe I got another little blessing to expand my testimony and stand up for what I believe He wants from me.

Life at home

So life is settling back down.  Vance has gotten off the fat free diet he was on as a result of the chylothorax.  His chest x-rays have come back clear, so he can eat all the fat he wants!  He's had mashed potatoes, green beans, and host of other table food.  He is so happy to eat what we eat. I have taken a break from the computer to try to get into a better house/appointment routine. I quit a game that Vu and I have played since I was pregnant with Vance and as you can see cut down on the blog. Hopefully just a short break. :)

3 more months!

That's how long it is before my miracle boy turns one!  Amazing isn't it??  I can't believe I've been so blessed.  First, just to get to be his mom because he is a documented one in a million human being. Second, that God let him stay here with us for a while. It'strue we don't know how long that could be but, no one ever knows how long that while is for any child. 
 
Lest you think yours is promised to you, I'll share a few who were called back before their parents expected. My cousin, Brian Moody, 16 years old car accident. He had everything life could offer at his finger tips, but God wanted him home. Taylor Storch, 13 year old on a skiing vacation with her family, called home so a mother of two could have her heart. Tiojai Williams, 5 years old swimming at a birthday party with his family. I'm sure we all know someone if we stop and think for a minute.

This isn't to sadden you but to help wake you up and give you a chance to appreciate your loved ones.  Tell them that you love them NOW because nothing is promised to us. I cam so close to losing my child that I never stop letting the people around me know that I love them.  They may think it's trite or just something I always say, but They will always know and I will never have any regrets.  A day couldn't go by without me telling someone that I loved them, to me that would be like trying not to breathe. It just happens without me thinking about it.  I read a poem that hangs in the parents room at the children's hospital and I'd like to share it here:

                            To All Parents- by Edgar A. Guest

"I'll lend you for a  little time
          a child of mine" He said,
"For you to love the while he lives
          and mourn for when he's dead.
It may be six or seven years
          or twenty-two or three,
But will you, till I call him back,
          take care of him for Me?
He'll bring his charms to gladden you
          and should his stay be brief,
You'll have his lovely memories
          as solace for your grief."

"I can not promise he will stay,
          since all from earth return,
But there are lessons taught down there
          I want this child to learn.
I've looked the wide world over,
          in my search for teachers true
And from the throngs that crowd life's lanes,
          I have selected you.
Now will you give him all your love,
          nor think the labor vain
Nor hate Me when I come to call
          to take him back again?"

I fancied that I hear them say:
         "Dear Lord, Thy will be done!
For all the joy Thy child shall bring,
          the risk of grief we'll run.
We'll shelter him with tenderness,
         we'll love him while we may,
And for the happiness we've know
          forever grateful stay;
But shall the angels call for him
          much sooner than we'd planned,
We'll brave the bitter grief that comes
          and try to understand."

I just wanted to share with you today that we all need to consider our lives and those around us temporary, and each day is to be cherished, not wasted. Now GO TELL SOMEONE YOU LOVE THEM!!

Sad news from 7c

In the last blog I introduced you to Grandma Martha, Hailey and La Whitney.  On Tuesday I got a call from another 7c mom translating for Grandma Martha.  Little Hailey passed away the night before.  It hit me like a ton of bricks.  She was doing so well the last time I saw her two weeks before.  I know her grandma was broken hearted.  No one loved that little girl more. I hurt for her.  She wanted me to come see her the next day, when Vance had his cardiology follow up, but I knew it would be an all day appointment, so I went down that night. I started a project a while back to provide pallative care families with a memory box, photo album and teddy bear. Hailey's mom Rachel would be the first recipient.  It felt good to have something to share, but still so sad to have to do it.  Plus I wasn't sure it would help. With the last $8 I had in my pocket I bought a rose for Martha.  I couldn't leave her out and I knew she would appreciate the thought. I went down to the hospital.  It was an emotional experience.  I could feel how alone she felt. At least Vance cheered her up. They played and you can't help but smile when that boy looks at you with that dimple and grin! We talked and I asked if they moved La Whitney because I saw another baby in her room. Then they told me, La Whitney passed away two days before.  I was hit by a wall all over again.  These two little girls stole my heart and now no one would get to share the experience of seeing their sweet little faces.  And my heart broke for their innocence.  I questioned was this allowed to happen because their parents didn't have the kind of commitment for them that would have been necessary to keep up the CHD fight. But then my thoughts shifted to the Wilsons and Deebs. You couldn't ask for more committed parents.  SO why their babies and not mine.  Yes a little bit of survivor guilt set in, but didn't last long.  I know that God doesn't randomly chose who lives and dies.  There is purpose in everything and thus proving yet again that Vance's life has a purpose.  God has a plan in mind for that boy. I have such a deep appreciation for the parents who have had to let go of their babies too soon.  When you know how blessed you are you can't help but be thankful for all you have been given.  We have the greatest gift that could ever be given right in our hands LITERALLY!

Home again, Home again, jig gidy jig

Yes we'll do a little dance!  We're home, but still busy enough that we haven't blogged or Facebooked in a few days. And not facebooking is like not getting up in the morning for me!  I don't skip it! Too many follow up appointments and work to be done getting the portagen formula he needs due to the chylothorax, though. (He is on a fat free diet for the next 6 weeks.) We literally spend the first two days home in drs' offices!   The girls came home too and will be with us for the next two weeks, so I can have a "vaca" with them for the summer. They have been really helpful he last two days and honestly I am not sure how I could manage without them.  Growing up fast.  They came to the store with me today and we picked out some fat free foods for Vance that were different than what they gave us in the hospital so he doesn't get bored with the same three veggies and two fruits! Plus I wanted to try to expand the texture of his food a bit.  He seems a bit grochy and tired, which given all he's gone through is understandable. I do worry about his not wanting this portagen and the diarrhea he has had because of it.  He lost about half a pound in the hospital and could lose more this way. We'll check him again in two weeks to see how things are progressing and possibly take him off the lasiks and aldactone if his weight is too low or if there are no effusions. For our non-heart friends, that just means if there is no fluid on his heart or lungs.  His o2 sats are still low mid to high 70's but he looks really pink so that must be better than where we were.  And we still have oxygen available IF he were to need it. He is still cheesing everyone up and learning new ways to catch a laugh or smile from everyone else.  So amazing how HE just wants everyone around him to be happy when he is the one going through so much.

Complications & new friends

Grandma Martha

Hailey

LaWhitney

Well, for as well as the surgery went we have been plagued by complications. I must admit though none too difficult for my little warrior to get over. He has had chylothorax, a "possible" stroke from a blood clot on the brain, unending diarrhea from the portagen,  and pneumothorax. What a tough little guy to go through the ringer like that and still just want to play and smile at the nurses. He is nearly ready to go home though.  Just need to get this air pocket absorbed and we're out of here. We've meet new friends along the way.  Ones I am sure will touch my heart forever. The first was little Hailey.  Her grandmother Martha was the first to tell us our little monkey was out of surgery and doing well. She didn't know us yet, but she knew he was ours because we were the "newbies" in the waiting room. Funny after being here you know who is "suppose" to be there and who are the current day's surgical family. The grandma, as Vu and I affectionately call her, barely speaks english.  As we later learned, she is from Columbia, South America. We watched her spend tireless hours at her granddaughter's bedside and tried not to listen as she poured our her mother's heart to Hailey's other grandmother in plea for Hailey's mother to be physically closer to the baby during her time of need. Her eloquent choice of words pulling both mine and Vu's heart strings as we sat silently nearby.  I was so overcome with compassion and longing for my own mother to have that dept of feeling for me that I could not help myself but to have to tell her what a wonderful mother and grandmother she was. I doubt I will ever forget her loving devotion.  Then there is little Lawhitney. She's 14 months old. Has already had 2 surgeries and is in heart failure.  I first saw her when we were in our pre-op visit.  During our times in the same day observation unit, I have never seen the nurses do much nursing, just lots of coordination of various drs, & other services, some vitals here and there, but not too much other than that.  Well on this day, I saw a nurse hovering over this child, barely getting more than two feet away from her and watching her every breath. I knew this child was seriously ill. I heard the nurse do the best she could to try to have this sweet baby sent to PCICU and not the step down unit to no avail. During the 8 hours that we were there, never once did a family member appear to sit at her bedside. It was gut wrenching to think of how she needed to be holding her mother's hand at that moment and not see anyone there.  She was eventually sent to PCICU that evening. We were there three days before I saw anyone show up to visit her and by that time I had already decided to reach out to this little heart. I bought her a dress to wear and a crib toy. Not much, can't spare much especially when we have the extra expenses of being in the hospital.  I also made her a little name sign to hang above her bed or on her door. I gave it to the nurse to give to her, but she had been moved to the step down unit again. I later ran into her grandmother and was able to pass along the gifts.  I've learned that Lawhitney's mother is a teenage mom. Barely 15, I'd say.  That is only a bit older than my oldest daughter. They live a distance away from the hospital and in the next two weeks will have to go back home.  Lawhitney's mother will have to go back to school and her grandmother back to work and home to care for her other children.  Meanwhile this precious little girl must sit and wait for a new heart to become available. I had the chance to talk to her mom alone the other day and just reach out to her, share that every day her little girl is with her is a gift from God. We were both nearly in tears and I did want to go on, but Vance started to cry from the pain of his chest tube and I had to get him back to his room to lie down. I know I haven't seen the last of little miss Lawhitney. I'll be up here trying to hold her when her mother can't.

2nd Surgery

So Vance's second surgery went well.  He ended up having the norwood, glenn and coronary surgery all at one time.  That is a lot of surgery for a little body. No hiccups in the OR like last time.  They really feel the proximity of his left coronary to the pulmonary caused that when the band was placed by compressing it. His coronary was intramural (running through the heart wall) as they had suspected but it was not very deep or very long so removing it was not as complex as Dr. Bradley anticipated. Thank God for that one. Everyone is pleased with his post-op progress.  Of course we want to see the vent off asap, but we're going to wean slowly today and see how he does.  We've got him down to 20 on the vent currently.  Checking blood gasses hourly.  His BP was a bit of a concern and I noticed that they put him on pace this morning, so I guess they are having to make up for the fact that they are sedating him a bit heavier because of all his movement.  He wants to wake up now!  He's shaking his head no which is pulling at the vent and could potentially cause inflammation making it harder to breath so thus the drugs.  Such a fine line we walk.  Every little thing affecting the other. I couldn't be happier though.  I am so proud of my boy.  What a warrior in deed!!  More updates throughout the next few days. Thank you for the prayers and God bless all of you following Vance. The support helps so much. We are God's hands and I felt his touch through all of the messages we've received from all of you.

packing and getting ready

I have no idea where to start packing but at least we aren't far from home like many others.  today and tomorrow are going to be hard.  I am so anxious and on edge.  It's so hard to balance these emotions.  I want to be happy for Vance.  He's getting to move closer to having a normal life.  Yet there is this fear of losing him. It's not an overwhelming one which is encouraging. At least I don't feel like that at the moment.  I know what we're up against and that is probably the biggest hurdle.  Sometimes I wish I didn't know so much about this stuff and could sit in oblivion. He looks so cute this morning, sitting up in bed (albeit propped by pillows).  He's grown so much and become so precious to this family. Kaytlyn and I bathed him together last night.  He is really starting to enjoy the bath and it was a treat for both of us to watch how excited he got.  I couldn't imagine a day without him.  His little smile, his non-stop leg kicks and loud mouth.  My monkey is something special! I'm just going to count my blessings while pack some clothes. Back at it tomorrow.

The glenn has been scheduled

After waiting two weeks after the CT scan, we still didn't have a surgical date. His o2 sats kept decreasing and he was starting to sweat a lot.  It was obvious that normal play that was fine before was starting to cause fatigue.  All in all it didn't take much to know he was ready for the surgery, so Dr. Havachek said they would "push" Bradley's office into giving us a date.  Well, the very next day they called with the date.  Next friday, July the 16th which also happens to be Vu's birthday, so we'll be expecting to be celebrating a very big day.

CT scan results

So the scan went well.  Dr. Havachek said he has some narrowing in the coronary that will also have to be repaired along with the additional arch work to the aorta. So not just the glenn but two other things as well.  This is gonna be a rough ride.  But at least we're ready and waiting for the next surgical date.  Everything else is done and ready. Holding our breath until then.

preparing for the next step

His PA bands are getting too small now.  His cath looked good, but D. Bradley wants to make sure there are no surprises like there were during the last surgery, so he and  dr Zyblewski reviewed the cath angogram results again.  This time they suspect that Vance's coronary arteries may not follow the normal path.  They think it's possible the arteries run through the heart wall not on the outside as usual.  So we have to have a CT scan before Dr. Bradley will consider surgery.  The Dr. that does the scans is out of town so we won't be able to get to it for another week.

the surgery

It seemed like forever while we waited for the surgery to be over. They give you a pager to text you with updates and we were glued to it, but I've since found that the pager is just a feel good thing.  I'm not sure I'll even want one next time.  They just fluff you up and tell you the real stuff later, at least that was our experience.  I guess maybe for the first time I was being treated like a normal patient's parent and I didn't know how to take it. Just give it to me straight. I've been told all this time that my boy has a death sentence hanging over him, so there isn't much you could say that I haven't heard.  But don't sugar coat it then dump it on me later.  That's what they did though.  See, my boy's heart stopped during surgery, if the rumors are correct, three times to the point where they had to do CPR. but no mention of complications on any of those texts. My jaw dropped and my eye wanted to wheal up but what was the point. He was OK now and doing fine. You know I wonder how much worse I would have been if they had said everything was fine but then come to tell me my boy had passed away?   Scary but he was fine.  My mom's reaction was overly dramatic and upset Vu and I even more.  I had to be real short to get her to stop and even then we had to get away from any negativity.  Our boy was good.  That's all we could think about.

Old stuff to catch you up on

I am really bad at story telling and I guess my blog will be the same way.  All the important points are hit, but not necessarily in the correct order. Since I stopped blogging for a while to focus on Vance, I have to go back and fill in the gaps, but I am trying to stay on top of things more this time so there are current events mixed in. Sorry but maybe it will make for more interesting reading. Soooo 2 weeks after Dr. Zyblewski (our Cardiologist) said Vance would be ok with surgery we got the call surgery in 4 days! OMg, my head was just buzzing. How do I plan for major surgery of my child in 4 days. How do I plan for my two other children and what do I tell them? Well, like everything else I procrastinate!  I did call my mom who said she'd be down asap and help me with the girls not only watching them but trying to keep their mind off of it too. So that was a relief. As far as everything else goes I was just in a daze.  I did as much around the house as I could manage, while keeping appointments at the same time. We had a long day the day before at the hospital in "same day" observation. After coming home and having dinner, my mom and her friend Michelle arrived and I spent the rest of the night til 1 am (surgery check-in 5:45am) figuring out what to pack and what to leave. The girls have school the next day but Gillian didn't want us to leave without her seeing and kissing Vance good bye.  She does love that boy so now! She got up at 4 and by the time we were leaving she was so wiped out. Mom said she was sure she was exhausted in school that day since she fell asleep in the car on the way to the bus stop a block away!

Heart Catheter Tomorrow (5/26/2010)

Anxiety is going to take over me tonight.  Vance had a normal cardio appointment scheduled for today.  Since I was downtown I planned on seeing a few other parents who were there;  A couple who just had a new HLHS baby boy yesterday and another whose baby girl has had 5 surgeries and has been struggling since Vance was in the hospital with her back in March.  We were doing the routine checks: height, weight, BP and O2 saturations.  His O2 was down. But still not out of the range they said was normal, but still 10% less than the last few times. I didn't think too much of it. After a while you start to tune out stuff like that unless it's really major.  We did his ECHO which to me looked better than the last time, less fluid.  So I figured we were in for good news. Set up the cath in a few weeks and then on to the Glen in a few months.  Well sometimes you get what you ask for but it's not exactly what you expected.  They said he is out growing his bands, which were always mean to be a temporary fix. But I could tell it wasn't something they were really wanting to happen so soon. I had felt all this time that the cath was just a means to an end, just a way to get to the next step, but for some reason I can't get over the way it's just so final.  Either they say they can do it or they say the can't.  Basically if he will live or die....so hard.

Like the energizer bunny....this boy keeps going and going and going

So when Vance turned two months old I figured it was time to stop treating everyday like his last.  We had to stop by passing things he needed like immunizations, well baby visits, etc. Just after his 2 month check up he had a high fever 103. I did what I would normally do, I called the pediatrician's office.  When they said it could be up to two hours before I got a call back because it was the weekend, I decided to call hospice.  The nurse on call said I could just give him Tylonol.  She sounded like she didn't know what to do, floundering when telling me what dosage to give him, so I wasn't very comfortable with her advise. Plus I didn't want to spend the weekend with a sick baby getting sicker until we could see someone on Monday.  Finally the Dr's office called and said we should get him to an ER babies that young shouldn't be having a fever like that. AHHH!!! I knew it! Stupid nurse! We took him to MUSC as usual.  4 hours later..yawn....we found out he had a UTI, which is not something 2 1/2 month olds normally get. It meant there was potentially an issue with his kidneys and/or bladder. More tests. But it burned me up even more with hospice. They were just going to let him get sicker.  On monday his regular hospice nurse called and said there was an issue with us taking him to the ER.  Hospice is not done that way. And if I took him back to the cardiologist there would be an EVEN bigger issue with that. Well it didn't take much for me to see that hospice was not in our best interest. They were not concerned about helping us care for Vance.  They were just collecting money while waiting for him to die!!  And I wasn't about to just sit by and let him die from neglect.  His heart giving out was one thing but anything else that was within my control to take care of was going to be taken care of. DAMN THESE PEOPLE ALWAYS DISCOUNTING MY CHILD.  I know he isn't suppose to live but WHY can't we treat him like he still is until he isn't anymore!

Reliving that moment

I read the blog of a friend today. She too made the decision to keep going with her pregnancy after receiving a terminal diagnosis. When her son was born, they, just like us, just basked in the glow of this very special very loved child.  The months of anticipation and anxiety over.  Now it's just this amazing life you hold in your hands.  Even more than your healthy children you praise God for bringing this little one into the world. You know that it was a struggle to get to this point and now the hope you had is tangible. It breathes; it's warmth; it's joy beyond joy. Then that moment...the one that lives in your soul forever...the one where you must decide to go forward with medical intervention or stop and let God take over.  So much of you wants to hold on to that life and just give it a chance. As I read, I relived that moment, the most devastating in my life,  surrounded by half a dozen strangers all with input as to how severe my child's condition was watching me shatter in a million pieces. Vu just silently rubbing my shoulders in some measure of comfort, but it's all on me. This is my decision alone.  I made the decision to continue the pregnancy, I carried him, I cried over him so many times, I dealt with the doctors, I loved him and now must make this decision not for myself but for him.  How does one go in an instant from having the most joyous experience to the most crushing?

It's been quite some time...

So it's been forever since I blogged.  Too much going on, to many places to write, share pics, etc that the blog has just gone by the waste side.  Sorry if you were following us.  If you didn't know already, Vance is doing wonderfully.  He was born Monday (fair of face and boy is he CUTE!) 11/23/2009.  They did an echo immediately after he was born but took him for another one after we got to spend about an hour with him.  He was gone more than 2 hours when they said I was "OK" to get out of bed to make the trip over to children's hospital where he was in the NICU. I doubt I was ready because I bled horribly and 6 weeks later I found out my incision had come open inside the uterus.  But we went so we could hold our precious baby boy.  Not knowing how long we'd have.  We were so elated he was finally here.  Everyone laughing, smiling, snapping pics like crazy.