2 years and counting

So much has changed over the last two years since Vance's birth.  The major medical struggles are mostly in the past.  We have one more open heart surgery to face at any time now.  He has about 4 more lbs to gain before they do the next cath.  It's been so long I can only imagine how scared I'll be all over again. Now that he is older, we've been comfortable thinking everything will be fine, but it's always so risky. And complications can pop up anytime, like we found out after the last surgery.  I am very happy to say that none of those have had any major lasting affects.  He is still stronger on his left side than right, but therapy is improving those areas where he favors the left side. He goes to cardiology some time next month for his check up.  They have all been very good, so I anticipate the same.  Although he is getting older and less cooperative with the echos, that isn't a huge issue.  We've been spending this time between surgeries focusing on Ds issues that delay milestones.  Overall he has done well. Everyone says he is pretty normal 2 year old.  The hurdles I'd like him to overcome in the near future are language and behavior related.  Again, that is typical for any 2 year old. He throws things, has temper tantrums when things don't go his way, and he has his baby language for everything.  But He's signing over 75 signs on his own.  Has started pairing two signs to make sentences, like eat banana (which all moneys love right?).  He hugs and kisses everyone randomly.  He's a sweet and affectionate child..  At this year's Easter picnic for DSAL he kissed Piper Slattery.  She's a cute little girl his age.  It was the most adorable thing ever.  He walked up to her, took her by the shoulders and kissed her.  When she looked surprised he ran off to play. Boys will be boys right?  The Most major change in our lives has come over the last few months.  Vu and I are no longer together.  It's been a very difficult adjustment on us all.  But time will work all those issues out for us.  The second huge thing in Vance's life to come later this year is the addition of a little brother or sister.  (Vu's having the baby, NOT ME!!) So that is an exciting thing for Vance.  I can't wait to see him do big brother things.  Hold his little sister or brother's hand, teach them how to do stuff, share his toys. It's something I wasn't sure he'd ever have in his life so I am very thankful for that.  Beyond things at home, he will most likely start school in November after his third birthday.  I am a bit nervous about that.  There has been so much in the news about special needs kids being mistreated in school.  It hurts my heart because I see these kids all the time with their families at events.  They are the sweetest things, so innocent.  How anyone could treat them badly is beyond my understanding.  I don't deny that there are times when they can be difficult, but every child is that way at times. I really wish people knew their stories and what they have already been through to get where they meet them. That is our society today though.  No one thinks about anyone other than themselves.  We don't stop to try to see there are reasons behind people's actions before we react in turn.

It's been forever!

I quit writing because I wasn't getting any new members or feedback on what I had written, so I just stuck to facebook where the majority of people who keep up with Vance look for updates daily.  It's funny if I am not on there at least every day I get comments asking if every thing is ok with us.  Here I could go months without a comment, but Vu asked the other day why I hadn't blogged in a while, so I figured at least one person is interested. I wonder how some moms with special needs kids manage to do this daily.  It's all I can do to change my one or two sentence facebook status every other day. I always thought that if I stayed home I would have so much time on my hands to do things I enjoyed or just relax, but it seems the opposite.  The work is NEVER done when you are a stay home mom of a special needs child. Not that I am not content. I think I'm finally there.  It was very tough giving up my career and devoting myself to a thankless job no one notices but me.  But love is about sacrifice and that is just one of the MANY lessons I've learned since having Vance.  I never thought my testimony could be stronger, but my love for God has grown deeper and my understanding multiplied.  I can't begin to tell you what my little man has taught me about the gospel, about Christ, about our Heavenly Father. Well, I could start, but I'd never finish.   On to the purpose for being here~ VANCE.  We've had nearly 2 years with him now.  In that time, he's had 2 heart surgeries, a stroke (TIA) affecting the left side of his brain, hundreds of hours of therapy, a few bumps and bruises and probably a million calories. :)  He finally weighs 22 lbs. Still has 6 teeth. And signs at least 60 difference signs. Pretty awesome especially since he was only signing about 10 in April. He started sitting up at 8 months, standing at around a year and was 19-20 months when he started walking.  Now he's working on running.  He walks backwards but still has trouble stepping over things. He loves to swing or slide.  He throws things which is nice when it's a ball but bad when it's an open cup or when he only holds it for a few seconds and we're doing therapy.  He is super independent now.  Too many hands on him for therapy so now he hates that. He also hates getting dressed or diapering. :( that's a major challenge!  He had his circumcision last December without any complications.  Glad we were able to get it when we did because medicaid stopped paying for them in January.  This December he will have his adenoids removed along with tear duct unblocking (not sure what the actual name of that is) and possibly ear tubes.   We will look at new heart cath once he gains another 10 lbs.  It feels like that could be forever.  He only gained 4 lbs in 6 months and is projected to slow down even more. This momma has to work on bulkin this boy up! So that's Vance at the moment. Hopefully I'll be better at this, but I always promise that and never live up to it.  All I can do is try though.  Something is better than nothing, :)

Out of sight out of mind

I guess I am like the typical person.  When things are going well it's easy to get so wrapped up in everyday life that things slip from our mind.  My blog has been one of those things, but not the only.  Randomly it will pop into mind that Vance for all his accomplishments (and yes there are many! :) will NEVER truly be over the hump when it comes to his cardiac issues.  He may be at a point where life seems normal, but anything could give at anytime.  We do the best we can to find ways of working around his heart defects, but you can't rebuild a heart like you can rebuild an engine.  For all the medical advances there have been in this area, there are still some things that are just left up to God to determine.  When I mention to Vu or friends about this fact every one wants to kind of head me off as if acknowledging it is asking for it to happen.  Leave well enough alone mentality.  OK that's fine I'd sure enough rather not think about it, but there's always something that pulls you in you know?  I am a follower of the Rachel Amariah blog.  I have been for some time.  I started following her because I saw so many similarities in the way her mom felt having to be faced with her child's mortality daily and how I felt before Vance's first surgery, at times even up until after his second surgery. Rachel had heart defects among other heath issues.  Her parents were told just as we were that she would live a very short time and that surgeries would most likely not prolong her life.  They took her home, just as we did and just spent everyday loving her, getting to know her, but always carrying the heavy burden of knowing that any day could be the last.  When you are in a situation like that it, days become hours, hours become minutes, minutes become seconds.  And there are 86400 of those in a day.  Anyone of them could be the one. It's a very overwhelming feeling.  Uncertainty of what you can and can't do during the course of a day.  Should I go to the store? Can I make it from a friends house to mine in time for Vu to see him before he stops breathing? Will he be able to leave work in time to make it home?  Should we try to schedule family holidays?  No I can't go to someone else's house and have something happen there.  No I don't want anyone else to be traumatized by being at our house if something happens.  If it did how would I tell everyone to leave?  These are the things that cross your mind.  Why is all of the relevant now when Vance is doing so well?  Because Rachel passed away. She lived 14 /2 months. Her parents just like us began to think of life as normal.  Everyday became a day just like every other. Although the were aware of their daughter's condition they had learned somehow just like we have to put that out of sight.  You can't live life like that everyday.  It becomes to so consuming that you MUST find a way to adjust and by not allowing it to stay in the forefront you are able to go on with life.  After a while, you just don't think about it anymore, that is until something happens.  To those of you who are blessed with health, remember death comes for us all eventually.  Just because you put it out of sight or out of mind does not mean it won't come. Be blessed and love each other everyday.

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.