Nova's Heart - 4 months of life, a lifetime of love

Sunday, April 30, 2006

I got back online after we got home this afternoon to find an email from another of our favorite CVRU nurses. Seems Nova's name is still floating around CVRU. I'm absolutely convinced that the nurses really underestimate how much they mean not only to us specifically, but other families too I'm sure. After a few days trying not to ruin everyone else's vacation by sobbing the whole time, it was really so nice to hear that they still talk about him and us. It means so much that he made a difference to them.

I have to make that appointment with Dr. Watts yet... The one where he explains exactly what happened. I didn't think I had any questions, but as time goes on, I realize that I do. I just don't know if I'll be able to hold it together long enough to hear the answers, or if he'll even have the answers I need.

Anyway, I think we'll run over to CVRU and say hi whenever we go to The Sanger Clinic to talk to Dr. Watts.

posted by Erin @ 11:58 PM 1 comments

Friday, April 28, 2006

We're off again for the weekend. Myrtle Beach here we come. Have a good weekend.

posted by Erin @ 8:54 AM 2 comments

Wednesday, April 26, 2006

I got his death certificate in the mail today. Such a cold and impersonal document to mark the passing of such a beautiful soul.

He deserves more, more than a few slots filled in according to governmental protocol, he deserved more than 4 months and 4 days.

It just wasn't enough.

posted by Erin @ 11:37 PM 2 comments

I just got a huge box of these. I sell them through my grief support site. They're really pretty cute, you put your child's picture where the face goes. I have one of Alexis, and one with Nova's picture in it too.

Normally they sell for $9.95 plus shipping, but I'm running out of room to store them, so I'm marking them down to $7.95 and offering free shipping. All profit goes into the fund to help parents who, like me, lose a child and have trouble paying for the burial.

(Paypal is having issues so email me if you can't use the button)

posted by Erin @ 9:46 AM 0 comments

Tuesday, April 25, 2006

I never was one to like labels.

When I first found online support groups for parents of children with (and adults who have) Congenital Heart Defects, one of the first things I noticed was that most parents have created a signature that includes their child's particular list of defects, complications, surgeries etc.

~Erin,
Mom to
Nova - PA w/Collaterals & VSD
Alexis - Angel Baby 8/17/01 - 8/29/01 died following OHS for ToF
and Tommy, Kory, Kassi, Brendon, and Terra - all HH

I never really used a signature like this, but if I had it would now have "Angel Baby" beside Nova's name, and his birth and death dates as well. They are like badges for the parents whose children survive, and sort of like those name tags you wear to your High School reunion, so you can identify the people who will "get" your concerns and issues the most readily. The ones with similar tags to your own will comprehend the names of the procedures your child will (or did already) experience. You know that they'll understand the alphabet that identifies your baby's problems, and all the medical jargon that comes along with it.

My alphabet doesn't seem to fit in there anymore - all those HLHS/HRHS's and ToF's and TGA's once seemed like a foreign language. I'd have to look up the abbreviation and study up on how similar or different it was from Nova's heart. Now I understand so much more of it than I ever wanted to. But RIP is a whole other language, one I speak fluently, but still can't really communicate.

What I can say, with absolute certainty, is that I don't want to wear around a tag that says "~Erin, Mom to 2 angel babies." It's a particularly heavy badge to carry around.

posted by Erin @ 8:44 PM 0 comments

Monday, April 24, 2006

So yes, we made it home, all in one piece. The drive time was as peaceful as I could possibly have asked for - even Terra the Terrible Two Year Old was well behaved. The visit was nice. It's been so long since I've been to Troy to see his family, I guess I forgot what great people they are.

Scott's mother and I seemed to hit it off in a way we never really did before. We never disliked each other, we just never connected. This time we did. I don't know if it's the fact that nearly a decade has passed since we last saw each other, or if it's the fact that we each just lost our youngest son, or maybe it's something else I'm not thinking of, I don't know.

All I know is that Scott's family is a bunch of really wonderful people, and they were all in so much pain. And yet many of them were trying to console Scott and I and say whatever they could to let us know that they cared about Nova's death. I had already decided that it would be rude and presumptuous to expect them to have to bear any part of my grief when they had so much of their own. Scott's mother extended her condolences, and all I could say was, "This isn't about me Connie, you have so much of your own stuff to deal with right now..."

It was a difficult thing, trying not to interject my own grief into theirs. I will admit that I cried through much of the service, and for my own loss as much as for theirs.

And there was so much family, the reception was full of friends and family, and little children and babies. So many babies. It seemed like everyone had a baby. One of them was born on April 3rd, a little girl with a full head of black hair. She's Scott's niece and her name is Alexis, Alexis LeClair, our daughter's name.

(Scott swears that her last name isn't LeClair - that she has the father's last name, but her older sisters wrote "Alexis Marie LeClair" in sidewalk chalk outside their house, so I dunno...)

We spent a couple of extra days there. We intended to leave on Friday morning but ended up staying until Sunday afternoon, and I felt as though I held my breath for 4 days. It was not my place to cry in the face of their grief, and I didn't. But it was a rough ride home. All the emotions all mixed up and bubbled over and I cried through Pennsylvania, Maryland, West Virginia and a good part of Virginia. I felt like I'd spent days wearing the various masks that were expected of me (or maybe they were entirely self-inflicted.) I just wanted to sit there in the dark and be as empty as I felt, and watch the lights in distant cities just slide by in silence.

I don't regret handling it that way. I'd have felt terrible if I'd have expected them to support me right now, they barely know me, and never even met Nova - but I won't even try to pretend that it wasn't one of the most difficult things of my life to do. My life still revolves around my son in some ways, and I felt almost guilty for not acknowledging him.

I don't know if I did it "right" but it's how I did it anyway, and I did the best I could.

posted by Erin @ 8:01 PM 4 comments

Tuesday, April 18, 2006

My absence is nothing to be concerned about... I haven't lost my mind, been institutionalized, or decided to let this blog grind to a halt.

On Easter Sunday, my husband's little brother passed away after a long battle with Leukemia. Nova and Alexis now have their Uncle Randy to watch after them.

We'll be making the trip to Troy, NY (12 - 16 hrs, via conversion, van with 5 kids... God help us) for his funeral. We'll be out of town until Friday evening. I doubt I'll have time to do much blogging while we're there, so there probably won't be anything new here until the 21st or 22nd.

posted by Erin @ 12:07 PM 4 comments

Monday, April 17, 2006

cafe' cafe': Attempt to Mark the Death of a Child

posted by Erin @ 11:37 PM 0 comments

This is a huge thank you to Tammi. I needed something to make me smile, and this did, in a huge way!

posted by Erin @ 10:56 AM 0 comments

Sunday, April 16, 2006

"When love is lost, do not bow your head in sadness; instead keep your head up high and gaze at the stars for that is where your broken heart has been sent to heal."
~ Unknown

Surely the stars are images of love.
~ Philip James Bailey

The sad and solemn night
Hath yet her multitude of cheerful fires;
The glorious host of light
Walks the dark hemisphere till she retires;
All through her silent watches, gliding slow,
Her constellations come, and climb the heavens, and go.
~ William Cullen Bryant

Now twilight lets her curtain down And pins it with a star.
~ Lord John Campbell

posted by Erin @ 11:21 PM 0 comments

Saturday, April 15, 2006

When I decided to start this Blog, chronicalling the trials and triumphs we'd experience during Nova's life, I had no idea that there were other heart families out there doing the same. I never expected to meet so many wonderful people, or to have so many of them (you) become such a part of my daily life. I have been amazed, repeatedly, by the strength and compassion I've found in all of you.

One of the members of this circle, Michael, of Wisdom Heart, has recently found out that his daughter Sophia would be going in for surgery. My heart goes out to them. I know it was not the news they'd hoped to hear, and as parents, we all know how frightening it is when our child faces open heart surgery.

I also know that there's nothing I can do to lighten their emotional burden right now.

In March he announced that he'd be walking in the American Heart Association Heart Walk in Kansas City, and was taking donations to support the AHA. Lately our small circle of Heart Families has amazed me with the amount of generosity that is shown when one of us is having a difficult time. Today, I tried in a small way to return that generosity and made a donation in Nova's name.

I'd like to encourage each of you to do the same, and show Michael, his wife Patty, and their beautiful daughter Sophia, that we're here for them right now.

-------------------------------

I made this post earlier and then later I realized that Michael had made a thank you post, and I was replying to it. See, I made that donation to Michael's cause in Nova's name, because I realized halfway to Walmart, halfway through a mental list of Easter basket fixings, that mentally, I was shopping for 6, but would only be buying for 5. I gave that money to Michael's cause in lieu of Nova's "Easter basket"

When I posted that as a reply, I had to enter that group of letters called a 'word verification strand' and that's where things start to get oddly philosophical, and a little weird.

The word verification strand for my reply was "dxmort" - in doctorese/Latin... Dx means diagnosed, and Mort is the Latin root word for dead. I don't think there was any better way of getting validation for making that donation.

Nova didn't need that basket - he's gone. But other children do need that money for research, to save other babies' lives. Without it, thousands of mothers will have children born with Congenital Heart Defects, children who, like Nova will be unnecessarily dxmort.

Go donate, save parents from what Scott and I are going through, save other kids from dying.

posted by Erin @ 11:23 PM 1 comments

I didn't realize until this afternoon that I hadn't yet explained what happened to Nova - how he went from doing so well, to doing so poorly in such a short period of time. Eventually, we'll make an appointment with Dr. Watts so he can answer any final questions we might have. But here's the basics.

What killed Nova was actually an infection. He'd had others, including the yeast infection, but this time it was something far more serious, and turned into a condition called sepsis. He was gone before we even knew what sort of infection it was, or where it originated, but what matters is that sepsis results in shock, which basically means that the body refuses to pump blood to the extremities in order to keep critical blood flow to the core organs. This causes a major drop in blood pressure, basically, the heart continues to beat, but the blood goes nowhere. Not even to the brain.

Nova was brain dead. We had the choice to either wait for his heart to stop beating on its own, or to unplug the ventilator. Either way, Nova was already gone, the only organ that was functioning was his heart. Ironic, isn't it?

We didn't see any point in letting it go on, this false sense of life that really isn't life. So we spent a little time with him, told him how much we loved him and how proud we were of how hard he'd fought. Then they removed the tubes and IV's and removed the ventilator, and I held him and rocked him until his heart stopped. We stayed with him for a while afterward, I don't really know how long - I just couldn't make myself put him down and leave him, knowing it was the last time I'd see him.

It was hard, but it felt better than making him go on, lifeless, for our own reasons. To do that felt selfish. I take comfort in knowing I was with him when he died. He loved to be held and snuggled close, and he hadn't been able to be held in six weeks. It was just right that he died in my arms.

posted by Erin @ 10:09 PM 2 comments

Scientists have formed a theory explaining a phenomena I've been seeing lately. It seems that when a star goes supernova and dies, there is a cloud of debris left in the wake of the explosion. Gravity then causes this dust to collect, and a new planet is (or, can be)formed.
Yup, no surprise to me. I've watched as all of you have gathered and become a new world for me, all because of Nova's death. It's been quite a stellar thing to experience.

posted by Erin @ 12:11 PM 1 comments

Friday, April 14, 2006

Someone that I "met" fairly recently through another website emailed me today. We never really got well aquainted because shortly after I joined that site, I found out that Nova had the heart defect, and just stopped going anywhere much online. She and I have been emailing back and forth lately, she's such a sweetheart. Today she asked what I thought of having a star named after Alexis and Nova. I never thought of it before, and I really like the idea. Of course, between that conversation, and that gorgeous full moon out there, I found myself staring at the sky tonight.

The big dipper was right above my house, full of nothing, and pouring it out over my roof. A big sticky scoop of darkness that smelled like baby powder and tasted of memories, and for a minute, just a second really, I wondered if he's eating well.

How he loved his bottles...

posted by Erin @ 10:46 PM 1 comments

Thursday, April 13, 2006

I don't know what to say here any more. I don't want to let Nova's blog go unattended, but I'm not sure what else to add now. Surely his story isn't over, is it? I know that his impact on our world continues. I can't bear to think otherwise. So I'm going to continue to post about the things that prove that his tiny little fingers are still shaping this world in some way.

Today, I got an email from one of Nova's nurses. It brought tears to my eyes, and showed me another way that he left his mark. I'm posting it here, to share it with all of you who became so involved with his story, and with our family.

Erin,
I just visited your website for the first time. I have to tell you that I think you and your family are very special people. When work called to tell me that at that very moment Nova was passing away in your arms, I was at once sad that I couldn't be there and happy that I wasn't. I thought I wouldn't have anything to say to you. I thought how ironic that after you, Scott, and I had spent hours talking (well mostly you and I) that I wouldn't have anything to say. But at the funeral, I did not feel uncomfortable at all talking with you.

Nova's funeral was the first child's funeral I've ever been to and it was very difficult. But I am so glad I came. As nurses guarding over your children, I think it is important to see the whole story. What happens after you all leave CVRU, no matter what the outcome. But it also adds perspective to my life outside of nursing.

I feel very privileged to have been able to share in Nova's life with you. I loved Nova. I loved taking care of Nova. It would be awful to say that some children are not special, but some touch us, as nurses, in ways unexplainable. It is not by chance that you came to have favorite nurses. It is because we felt something special for Nova. People always ask me if I have to remain detached in order to do my job. But I feel just the opposite. I have to be able to become attached to some in order to do my job.

I will never forget Nova, you, or your family. I think that you all are so much more than meets the eye. I read the part of your website that said people offered an ear to listen but you wouldn't know what to say. Well, I don't believe that. You are truly gifted in the way of words. And I want to make sure you know that on any given night of the week, or even the weekend, you can call CVRU and talk to any of us. And you can call me personally as well. My number is XXX-XXX-XXXX. And you don't have to have anything earth shattering to say. I promise.

You and your family will be in all my prayers

posted by Erin @ 10:32 PM 2 comments

New posts are down below, this one is going to float awhile so it gets seen

There are so many posts for and about Nova. Songs, poems, thoughts, prayers... So many that I am struggling to keep up with finding them, let alone reading them or replying to them. I want to post a link to each of them, and I know I'll never be able to find them all again. Technorati says there are 9 links from 8 sites, but that is only a fraction of them.

So if you've posted something about Nova and our story, please please PLEASE email me the link to it, I'd like to do a sort of scrap book, both an online version, and an offline version, to keep with his things.

Also, for those of you (many) generous souls who have made a donation in Nova's name, (If I haven't contacted you personally, I apologize, things have been so hectic - and there are SO many of you! I've just gotten lost totally as to who I've thanked and who I haven't!) please email me your home address or your paypal info, so that I know how I can repay you. I'm afraid most of the paypal donations came in without any snail-mail addresses, and I don't want to miss anyone who needs me to repay them.

MAIL ME!!!

And now, I think I'm going to try to catch up on the email - you're all such wonderful friends, and there is MUCH email to be replied to!

posted by Erin @ 10:24 PM 2 comments

Wednesday, April 12, 2006

There's something I should say, but I don't know what. A poem I should write maybe... I don't know. This whole thing has been so full of everything, and I feel so empty despite the wonderful things that have happened.

It is a craving - I remember it... Finding myself in front of the refrigerator, or staring blankly into the cabinet, no idea how long I'd been there, but knowing, again and again, that what I wanted so desperately wasn't in there.

I have been so lucky, so loved, so much a part of some inexplicable miracle, and I'm glad of it. It has been much easier to survive, and will undoubtedly be much easier to bear. But that is not to say that I am not terribly unspeakably empty, broken, and craving.

I have laughed and smiled more in the last few days than any grieving mother has the right to. I don't regret a moment of it. Nor do I deny that I just cried over the ending bit of LOST because I want my magic island, my miracle cure, my fat and naked baby - wrapped in sand and rocking in a cradle of branches on the beach, backdropped by all the sappy cliches of crashing waves, and the night sky draped behind us like Elvis painted on velvet.

Is it a little crazy to be jealous of fictional characters in a weekly drama? Probably, but I've done very little in the way of defending my sanity over the years, especially the last 5. I know I lost my mind after Alexis died, I don't know if I ever "got it back" so to speak. I think I just managed to become functional, in spite of it all. Now... Well, now I wonder if I haven't completely lost it, maybe I just haven't realized it yet, the insane don't ever know they're insane, do they?

I have received a load of email, offering to listen if I want to talk. I appreciate them, every one. But what am I supposed to do? Call someone up out of the blue and say, "Ok, I want to talk..." Do I start the conversation with something "Hi! How you doing!?" I mean, what is there to say really? We all understand the futility of words, my call would only serve to make someone else uncomfortable. I understand myself enough to know that I'd never cry, it isn't allowed, I don't do it, I can't do it, not with an audience. I don't want to talk anyway. Conversation isn't what I want. What I want is for this all to be unreal, undone, over.

But you see, this isn't something that will ever be over. There is no audible click that signifies the moment when you're done. There isn't a party with confetti and balloons and much rejoicing when you've paid your penance, there is no door prize. Grieving is never done. It is a journey that seems to have no real destination. Somewhere, some time, I read a saying, one that seemed perfectly valid at the time. It said "Grief is a journey from loss, through pain, to healing."

Now it sounds like the directions that Map gives Dora. Loss, Pain, HEALING! Loss pain, HEALING! Swiper no swiping! Oh maaaaaan... How utterly ridiculous it sounds now. What does "healed" mean exactly?

It is something I once thought I was. Or maybe something I tried to convince myself that I had achieved. Now, it is something I wonder if I'll ever be.

posted by Erin @ 11:40 PM 2 comments

I had briefly mentioned an email I received a few days ago from the mother of a 21 year man who was addicted to drugs. I had been waiting for her permission to post her actual email. I got her reply this morning, and I'm absolutely overjoyed that she consented. I truly feel that each of us has a purpose in life, a reason, a goal to fulfill - to change someone, to touch them, to better them in some way, or to leave them open to some way to better themselves.

I think that this letter may mean more to me than any other I've ever received in my ten years of being online, because it exemplifies the power of the struggle Nova experienced, and how much he has and still is impacting our world.

He was such an amazing little guy. I miss him so very much, but if his passing has saved this woman the same pain I'm feeling over losing my son, then his life was well lived indeed.

I've changed the son's name, and omitted hers, for the sake of their privacy.

----- Original Message -----
To: erin@poeticacceptance.com
Sent: Monday, April 10, 2006 8:54 AM
Subject: Nova

Hi Erin, I just wanted to thank you for being the kind of Mom you are. Because you shared your abiding love for Nova with us all through your writings on the net, he indeed touched lives in unexpected ways and places. I have to tell you the way Nova's life affected my 21 yr old son's life, because it's nothing short of a miracle.

Jack is a drug addict, pacified these past 8 months on daily methadone doses to curb a 4 year self destruct, hammering every drug imaginable. Of course this beats strolling the streets for just any ole drug to inject, but as you know, it too is an opiate rendering many of the same side effects as any opiate. It's a 'ball and chain' and all the other cliches' used to describe addictions.

I shared your post stories about Nova's daily struggles with Jack. He was humiliated to learn a little baby boy on the East coast, through no choice of his own, had to have some of the same drugs he's abused by choice. John enters a rehab on Good Friday, April 14, miraculously inspired by Nova's suffering and death.

Nova had a voice because of you, Erin and his courage will be heard and respected far beyond those hospital walls if you will please keep writing.
---------------------------------

This story was also a part of Nova's eulogy, and will forever be a part of my memory of the miracle that is Nova.

posted by Erin @ 11:01 AM 0 comments

Ang talks to Nova

Erin posts a memorial (but I can't find the permalink, so scroll.)

Mary and and her husband Juan take a few moments here and here for Nova

Laura is touched by Nova too.

Mike commemorates our friendship, Nova's funeral, and much more.

James writes a poem or two for Nova.

Nova on the Women's Self Esteem boards

Kriss shows her support for Nova

Erika talks about Nova (and man have people followed her link!)

Michael's post about Nova's passing

Julia dedicates this poem to Nova

Martin references a poem in memory of Nova

Vickie writes a poem for Nova

Drawing on Words posted a Poem for Nova...

A Poem written by Chelsea for Nova, and more here

and one that Shyloh dedicated to Nova.

The Walsh Family breaks the news and says a prayer.

Waterfall posts Logan's Song for Nova.

Billy helps me say goodbye

Cicero sends his condolences.

Mandie says a prayer

Carla shares her thoughts - and they spread to the comments here.

Nova (and Alexis) makes a cameo on Blogher.

posted by Erin @ 10:24 AM 0 comments

Tuesday, April 11, 2006

It's been a very long 12 hours since I woke up. I'm tired and a little empty, but I wanted to write down all the names of the funeral attendees.

Scott, myself and the kids. (obviously)
My mother
Sheryl and Jerry (sis and bro in law)
April (my niece)
Noelle (sister)
John (brother)
Trish and Rodney (my best friend/sister and her husband)
Tiffany, Shanda, and Mel (3 of Nova's nurses)
Mika and Gina (Maeghan and Heidi Heart Foundation founders)
Mika's mother whose name escapes me.
Arlen (the preacher)
Garren and Peggy Dean (landlord)
Mr. Trull (funeral director)
Mrs. Deese (Works for Lakeland Memorial)

Shanda, Tiffany and Mel are 3 of my favorite people in the world. Jane is another nurse who I love dearly, sent her thoughts and love - she worked 12 hours last night, and had to work 12 tonight, so she couldn't make it. I think I might call her in a few minutes. (Ha, I stopped midpost and called her. I adore her, she's wonderful!)

It meant so much to me that they came. The nurses were his family for those 6 weeks, and I love them. There were others that I'd hoped could make it... but I'm sure that most of them were either working, or just getting off of work. I know that they were there in spririt.

There were flowers from Eve (Eve, it was gorgeous, seriously honey, beautiful) Trish, Jimmy (Sheryl's boss - another breathtaking arrangement) and The Maeghan and Heidi Heart Foundation. I wish I could save them all forever.

I wish I'd have had a tape recorder to tape the eulogy Arlen gave. He pointed out the meaning of his nickname "Nova" and the scriptures and overall message were really beautiful. He is one of those people, one who just exudes love and acceptance and faith and an unspoken power that just radiates through you when you're near him.

Mika's sister sent enough food to feed the neighborhood. Seriously. And it wasn't fried chicken, which is the official comfort food in the south, and boy was I glad! It was spaghetti and salad and garlic bread and 3 deserts and enough sweet tea to drown our sorrows... and it was damn good, let me tell you.

We came home, and my family came with us, and we gorged ourselves and had a lot of chaotic conversation, what with 6 kids in the house. Noelle picked up her daughter on the way over, and she's 3... Terra and Maddie had an absolute blast together. It was nice, and loud, and a little crazy, but all in a nice family togetherness sort of way.

After the family left, we went to get some balloons. 8 heart shaped ones, one for each of us. We wrote secret notes to Nova on little cards that we tied to the ribbons, and we took them out in the yard and set them free. Yes, I do know that Nova will never read them, but it gives the kids something tangible to do, something that they can use to say their goodbyes, since we had no viewing and they hadn't seen him in so long.

All the kids' balloons soared - mine and Scott's got tangled in a tree. We refused to go inside until they came loose, so we lit a fire in the firepit and spent some quiet time together, an impromptu campfire night, sans marshmallows. My balloon eventually came free, but Scotts never did, so we took a star shaped balloon from one of the flower arrangements and he did it again. Now that one, it flew forever, and we watched it until it disappeared.

All in all, it was a beautiful day. It wasn't somber and depressing at all. There were a lot of smiles and laughes and love and conversation and hugs. Some tears, sure, but it was more about appreciating the gift of his life than anything else.

I'd have rather the family came for that homecoming party I was planning, but all in all, this was good.

Our digital camera refuses to take outside pictures anymore, it just comes out all white no matter how we set the settings, so we used a regular camera. There are pictures of the casket and flowers, pictures of the balloons, but I have to get them developed tomorrow, and when I do, we'll scan them and share.

posted by Erin @ 10:01 PM 1 comments

Let me say this, and be clear - funerals are not for the dead; they are for the living.

There is a certain arrogance in our humanity that convinces us that the dead are listening to our insignificant words of sympathy and grief, a sadistic need to watch as the casket is lowered into the ground, a selfish desire to take that final opportunity to say the things we didn't, to attempt to assuage our guilt or emphasize our love.

Nova is gone.

The emptiness of my arms is all the convincing I need. He can no longer hear my tears or declarations of love, but for four months and four days he knew that he was loved beyond expression. Every moment he was in my arms, from his first breath, we adored him, and he was comfortable in that knowledge because we showed him.

He isn't looming somewhere above or below us waiting for us to say the things we never did, but should have, he isn't expecting some too-late apology for wrongs we perceive that we have committed against him.

And he is not the empty lifeless form inside a 36" box waiting to be swallowed by the earth. He is not.

He is the magnetic force that has brought together hundreds of people he never met. He is an indescribable energy that changed people's lives, touched people's hearts, brought tears to innumerable eyes. He is the reason I received a note from the mother of a 21 year old man in a state Nova never even heard of - an email to thank me for changing her son's life by sharing Nova's story.

He is the beautiful face and courageous heart that touched people in ways I can't even explain - he is the stimulus that brought about a generosity of spirit that I have never before experienced.

I will always miss him, I am left missing a part of me that can never be replaced, aching for another moment to hold him, smell him, feel him against me in the quiet of night.

I will also live feeling a sense of pride in what he accomplished in so short a time, blessed by having had the chance to see his beautiful smile and know it was for me. And I will always feel honored to have carried him inside of me, honored to have given birth to the phenomena that is Nova.

posted by Erin @ 12:48 AM 6 comments

Monday, April 10, 2006

I've been doing a lousy job of keeping up with replying to your comments. I'm sorry. I want to say again though, thank you all so much. So many people I've never met have said that they'll be at the funeral in thought and spirit... I'll be honored to know you're all there, in whatever capacity, physical or mental. I am such a lucky woman to have friends like all of you.

posted by Erin @ 9:59 PM 0 comments

A Poem written for Nova:
Thank you Chelsea

white dwarf implosion and the supernova

can you feel
the rings of saturn
on your fingers?

the impositious reaching
of a life
built from strung-together
nebulae.

stars hang
in a spring's bleeding
veils.

the coronal aura of
your very existence.

in that family's universe
you were integral,

you were a world.

in a sunset's
dying blush,
we feel the warm breath
of your dissolving
on our skin.

posted by Erin @ 4:40 PM 1 comments

http://shylohspoetry.blogspot.com/2006/02/today-i-set-you-free.html

Today I set you free
to be who you need to be
Our paths crossed
In a magical place

It was the perfect choice
But your heart was too fragile
Our destination was not meant to be

Day by day, reflections
Of us in shattered glass
This is a place I can never return
Our destiny was never meant to be

Poems of love will now fade
Trails of tears will be distant
In the oasis two soul mates
Stand with faces silent

The thunder of forgotten dreams
Will now sound throughout infinite
May you be at peace
Under a gossamer sky
And fly on the wings of an angel
Throughout your journey

posted by Erin @ 1:02 PM 1 comments

Sunday, April 09, 2006

click to read full sized

Mr. Whaley (sp?) at McEwen Funeral Home wrote up the obituary. He was pretty impressed with the fact that so many people have gotten so involved in Nova's life, especially in the online world. (I'm not sure what he meant when he said "internet pay chain" ...) He told us that he's been blessed through his experience with us, and our experiences. All I know is that I'm so impressed with how peronally he has taken our son's arrangements. He's been wonderful.

He called earlier today to tell me that he had Nova ready and that if we'd like to come spend some time with him, we could. We declined. I held him as he died. We said our goodbyes, let him know how proud we were of him and how brave we thought he was. Now I want to remember him as the baby in this picture. I just couldn't go back and see him the way he looked after he died.

posted by Erin @ 9:25 PM 4 comments

Saturday, April 08, 2006

There will be a simple graveside service at 11:00 am on Tuesday morning at Lakeland Memorial in Monroe. McEwen Funeral services are handling the arrangements. We don't know yet who will officiate, we've been trying to contact Arlen Smith from New Covenant in Matthews. Unfortunately, we haven't had any luck there, and will have to start looking for an alternate before time runs out and we find ourselves preacherless. I don't belong to a church, so I don't even know where to begin. Arlen spoke at Alexis' funeral, and I'd hoped to have him do Nova's as well. I suppose we'll see what heppens, but I guess tomorrow, I'll have to start doing something.

The flowers are taken care of. We picked a simple all white spread for the casket. Choosing them was actually one of the hardest things I've had to do so far. There are catalogues of pictures of different arrangements on caskets to show how they look. It's difficult to say out loud, "It's only a 36" casket so we don't need a full sized arrangement..."

We haven't picked a headstone yet, but that can wait a while I suppose. To be honest, I just don't think I'm ready to choose headstones, fonts, styles, shapes, colors. It all seems a little clinical/technical... like I'm building a webpage and picking templates and background colors. No, just not ready to do it today. Maybe Monday.

His obituary is basic, with a picture. This one.

because it's my favorite. I cropped it so he wasn't all naked and hanging out, but he's definitely being "Nova" looking right at you, all strong and sparkly. The Nova we had home, the one we loved so dearly.

It's supposed to be 72 degrees and sunny Tuesday. We couldn't ask for more perfect weather. I'm sure the ceremony will be beautiful, but the truth is, I dread it. I'd almost rather skip it all together, but that isn't fair to him. So it's open to whomever would like to attend. I know my landlord will be there, we saw him today to pay the rent. And of course my family will all be there. Some of my friends, and maybe Scott's friends too, even though they're really more like business associates. Mika is coming. I don't know how she'll do it. Her daughter was the same age when she passed away, it's bound to bring up memories. Scott's family won't make it I'm sure. They're all in New York, and pretty well tied up with Randy, who is arranging his own funeral. Scott's mother just cried and cried that she couldn't come. That poor woman. I can't imagine her life right now.

I don't even know who else might come, I won't be surprised if there are a lot of people there. I still have to call CMC/CVRU and let them know where and when it is. Have I explained how much I hate using the phone? I think I have... and man have I done some serious time on the phone these last couple of days. Most of it with people I don't even know, or barely know. But I've had some really nice conversations too, so I won't complain. Wait, I guess I already did huh? OK, so I shouldn't complain.

posted by Erin @ 8:37 PM 3 comments

I don't know what to do with this. Or with myself. I have to keep reminding myself that I don't have to call the hospital and check on him.

There is no instruction manual for losing a child, no right or wrong to grief or loss, but I almost feel guilty tonight. The tears dried up when the stream of visitors and phone calls started. Everything now is just quiet. Too quiet.

I want you all to know how much the outpouring of support has meant to us. How much it means to know that Nova had the opportunity to touch so many people. Anyone who knows me knows that my philosophy has always been that we were all put on this earth to touch people, to leave them somehow better, or at least open to something better. Alexis never had that opportunity. Her 12 short days of life and her relative anonymity didn't allow for it.

But Nova managed to touch so many people's lives, so many people followed his story and loved him, and so many people mourn for him right now. He was special, and not only to us. We are so grateful that you all cared and were effected by his life. That through you he was allowed to fulfill his purpose.

He was so beautiful. I am indescribably lost without him.

posted by Erin @ 12:29 AM 3 comments

Friday, April 07, 2006

My house has been full of people, my phone has rung off the hook and somewhere along the way, I hit this weird numb auto-pilot. I'm just oddly calm. I know that part of it is exhaustion, but I have to admit that a big part of it must be all of you praying for us and all the thoughts and wishes and support.

So many of you have donated. I'm in awe of the amount of love and caring that you've all shown. Everything that we needed has been provided for, and more - thanks to you and friends and family.

Thank you all so much. I can't even begin to put words to my appreciation.

posted by Erin @ 10:56 PM 0 comments

I don't want to do this. I don't want to have to do this. But I'm doing it anyway.

The funeral home is allowing us to set up a payment plan, the cemetery however, will not. They want $775 up front before they will bury Nova. I'm not big on begging, but for Nova, I'll beg.

The good news is, they've decided to start another row in Baby Land, and bury him in the same area as Alexis. I don't know why that means so much to me - my rational mind knows it doesn't matter, but I really want him to be near his sister. Now he will be.

For any of you who do decide to donate, I will do my absolute best to repay you, I already owe so many, and it will take me a while to pay, but I'll do it. The button is in my sidebar.

posted by Erin @ 3:51 PM 4 comments

The poem/quote posted below was sent to me by one of Scott's friends. I didn't know who it was at first, but letely I've been getting a lot of mail from people whose names I don't recognize. But Scotty recognized the name in my inbox as a friend from his NASCAR sims racing league. I had no idea any of them read my blog. It's good to know he has friends that have read along and support him. God knows it has made all the difference in the world for me to know that all of you were reading and supporting me. I hope you all know how much we appreciate it.

I'm off now, to deal with the ugly business of funeral arrangements and burial plots, and trust me, it's definitely a business, and a lucrative one at that. It sickens me to think about all the people who will profit from my son's death - the same people who profitted from my daughter's. We're using the same funeral home and cemetery. It isn't that I resent them exactly - they do their jobs, and it's a job that needs to be done. I just wish I could do this without signing payment plans and thinking about just how much money they'll be making.

Alexis is buried in an area called Baby Land. I wanted to have Nova there too, but Baby Land is full. There's no room for him there. It makes me sad that he can't be with his sister. It makes me feel like he's going to be alone.

posted by Erin @ 10:11 AM 3 comments

There is a sacredness in tears.
They are not the mark of weakness,
but of power.
They speak more eloquently
than 10,000 tongues.
They are the messengers
of overwhelming grief,
of deep contrition,
and of unspeakable love.

- Washington Irving

posted by Erin @ 9:44 AM 0 comments

Thursday, April 06, 2006

Nova died in my arms at 4:23 this afternoon.

We love you little man. You fought hard, you made us proud. I don't know what to do without you.

posted by Erin @ 8:08 PM 8 comments

Wednesday, April 05, 2006

The sunset tonight was gorgeous. I mean gorgeous. Too I've been in too much pain to really enjoy it. Migraines. One for me, one for Kory. He had the added blessing of puke. It was lovely. Nothing like a sweaty puking teenager lying listlessly across a waiting room couch - yeah, his hit on the way there, or I'd have put him to bed and left him home. Wish I could have put my head to bed and left it home. I'm in hell, just for the record.

One of my 2 favorite Patient Reps worked her last night tonight. Don't know who will replace her. CMC better hope to God that Joan doesn't quit too. Joan and Michelle keep the joint running, poor Joan. Hope Michelle's replacement is damn good.

Nova is doing well - they re-re-re-inserted the right chest tube. It's been in and out and in and out and now it's in again, but he needed it. It drained off 71 mls in the first few minutes. (Again, 30 mls in an ounce, so nearly 2 1/2 ounces of fluid.) His black eye looks much better. He's still a little swollen, but not too bad. He looks really good actually. They've added another antifungal to his Rx cocktail - that's 3 antifungals, simultaneously. They started the tube feeds back up at 10am this morning - he's up to 8 mls an hour - he was at 12 mls an hour before yesterday's procedure. It sort of scares me to believe that he's really doing ok now, part of me is still holding its breath waiting for the next complication to come up. God help me, please let there be no more complications.

Have I told you guys about the kids from Uganda? Samaritan's Purse sponsored two children from Uganda to come to the US and have open heart surgery at CMC. Dr. Watts does a couple of kids a year through this sort of program. It doesn't surprise me, it's just the sort of thing I'd think Dr. Watts would do. Amazing isn't he?

LOST kicked ass tonight didn't it? I watched through my fingers as I held my head and begged for mercy. I missed the first half but I just had to watch the rest, despite my head. I thought they were going to kill Hurley off, and I was going to be pissed off in a major way. I can't figure out exactly where they're going with this new plot line, but it's sure better than killing him off.

OK, I just can't type any more. I'm going to go lay down.

posted by Erin @ 11:08 PM 1 comments

Not long ago, I joined a Yahoo group for Congenital Heart Defects. I'm not very active. I've only posted a couple of times, but I get the messages in my email, so I read all of them. They make me think differently about how parents cope with things, and how differently you see things after you learn that your child has a major health issue.

Tommy, my oldest son, was a difficult pregnancy. I went into premature labor repeatedly, nearly died of a severe kidney infection, was put on bed rest, and gave birth something like 6 weeks early. Fortunately, there were no complications. He was over 7 lbs when he was born, and was discharged the same day I was 3 days later.

When he was about 18 months old, he went through this phase where he refused anything but a bottle, sliced American cheese, and dill pickles. His pediatrician wasn't worried. He gave me the "kids know when they're hungry, they won't let themselves starve to death, when he gets hungry, or tired of pickles and cheese, he'll eat..." speech. I proceeded to feed his strange appetites without thinking much more about it, for about a month, until he decided he didn't like pickles or cheese anymore, and went back to eating pretty much anything I put in front of him.

Today, I got a message via the Group, in which a first-time mother of a one year old Heart Baby asked about her child's refusal to eat finger foods, or baby food either for that matter. All he wanted was a bottle. His diapers were normal, his pediatrician wasn't concerned etc...

My first thought was to respond by telling her my Tommy story, and then I gave it some more thought. Heart babies seem to have feeding problems, lots of them. I've never had a heart baby post-surgery at home to eat, I have no experience with any such thing. Maybe it is the same as any other baby goes through, just a phase or whatever. And maybe it isn't. I don't know.

What I do know is that when I get Nova home, I'll be freaking out about every little thing. I'll have no idea what's 'just a phase' that any child would go through, or what's a sign of a potential problem. I'll be asking a million questions of all of you. His pediatrician and cardiologist will probably hate to see my name on the caller ID because I will drive them insane. I'll be paranoid, and seeing signs in everything he does, every change he goes through, and I'll never be able to believe that there's any such thing as "normal" or "nothing to worry about" when it comes to him.

So, am I nuts? Or is this a pretty normal reaction to all of this? All of you with older or post-op kids, do you freak out about every little thing?

posted by Erin @ 12:55 PM 4 comments

Tuesday, April 04, 2006

Man, what a day it was. They called for him at ten, but didn't start till nearly noon, then they told us 4 - 5 hours, but only took like 1 1/2. We thought they started, we thought they'd be half done, then they had just started, then it was hours to go, then -poof- all of a sudden they were done.

This morning, I was cussing people (under my breath of course, mostly... but that's a different post all together.) This afternoon I was skipping down the hospital hall.

They told us we'd get to see him somewhere around 2:15 or so, but we didn't actually get to see him until nearly 4. And frankly, he looked like hell. He has a black eye, blood in his urine, and he's swollen again (which is what caused the black eye) but he's beautiful. Every mother falls in love with their baby at birth, I just keep falling in love with him. He's beautiful, even when he looks like he lost a fight with Mike Tyson. I am reminded (all too often) to appreciate every minute with him.

Anyway, the urine in the blood is because of the high doses of blood thinners he was on last night, but nothing to be concerned about, the swelling is normal, the black eye is because of the swelling and the position he was in during the procedure, as the swelling began. Nothing to be overly concerned about at all.

Here's his "Nova" hat, on his pretty little head, at 4pm. If you look really hard you can tell that his left eye is black, and swollen shut. Looks like he went 13 rounds with Dr. "Magic Fingers" Stern... but hey, he won ;)

posted by Erin @ 11:45 PM 2 comments

We went up to see him at 10:00 this morning, and at 10:10 the cath lab called to say they were ready for him. We assumed (silly silly us) that he'd be going back then, but they actually didn't start the procedure until 11:52. We'd been told that it would take 4-5 hours to complete the procedure.

Dr. Stern came in a few minutes ago at at about 1:30 to say he was done, that there were no complications, he tolerated it well, and we'll get to see him about 2:15.

I'm going to start calling Dr. Stern "Magic Fingers" or something. Nova just likes him. I told him that from this point forward he's got to do whatever Nova needs done, because he does so well for him. He said he'd be glad to. :)

We haven't seen him yet - I can't wait!

-------> I was so excited that I left out the detail! The blood clot was 4 cm in length, and blocked something like 90% of the SVC - Dr. Stern cleared 80% of the blockage, and thinks that the blood thinners will be able to eat away the rest of it. He also said that he was "very concerned" about the possibility of major complications, but that Nova "didn't turn a hair" and sailed right through it.

I was honestly so relieved that I thought I was going to be sick. I was more worried with this procedure than anything else he's had done.

posted by Erin @ 2:01 PM 5 comments

Monday, April 03, 2006

Nova had another CT scan today to assess how much the blood thinners had reduced the size of the blood clot in his superior vena cava (SVC). The blood thinners have made no difference at all, and the SVC is nearly completely blocked. This means that there is very little room in the vein for the blood to flow through from his head and arms back to his heart.

Tomorrow he goes in for an Angiojet cath to try to clear the SVC. This is sort of like sand blasting away the blood clot and sucking out all the bits. If it works with no complications, it will be a wonderful thing. There is a chance that the clot will come loose and travel to his lung, which would kill him. And there is the chance that the clot is too hardened for the procedure to work, which leaves us with the only remaining option, which is to go back to surgery, and basically we'd start all over again where we were 6 weeks ago.

And here we are again, the thing that saves him might kill him, and there is no choice but to do it. I don't know how much more he can take. I don't know how much more any of us can take.

He goes in for the procedure at around 11 in the morning. I have no idea how long it will take. I'm praying that it is successful, uncomplicated, and that he tolerates it as well as last weeks balloon cath.

They also saw, via the CT scan, that the veins in his groin, on both sides (femoral veins) are completely blocked. There is nothing they can do to correct that. They tell me that the blood finds other smaller veins to travel back to the heart and that those veins being blocked isn't as serious as it would seem. The major problem with these veins being blocked is that they can no longer be used for future heart catheterizations, and we know he'll need future caths. They'll have to resort to using the vein in his neck (external jugular - the one they used last week) to do tomorrow's cath, and future caths. Unfortunately, the more you use a vein, the more likely it is that the vein will deteriorate and become unusable/blocked. Eventually, they may have to use the vein from his liver.

I love the nurses in CVRU, the doctors are wonderful. I love Dr. Watts, and Dr Stern is amazing too. I have been blessed with every one of them, and am grateful to Joan and Michelle (Patient Reps) for how helpful and sweet they have been to us.

I'm sick of them all, I'm sick of this ride. I'm sick of bad news and hearing the words "devastating" and "catastrophic" and "death" used in reference to my son.

This is tonight.
I saw a hat on another heart baby's site that said "I'm a Miracle" that came with a matching onesie. It was adorable, and I fell in love but I can't afford $26 for the set, so I hit eBay and had one made for him. $4. There's no matching onesie, but he can't wear any clothes right now anyway. Her name is Colleen, and she's wonderful. As soon as she read his story, she rushed the order, and included an extra hat for free that has his name embroidered on it. If you need personalized baby hats, she's the one you should talk to. We didn't get pictures of the "Nova" hat, but it's seriously cute - the hat has multicolored stars all over it, and his name on the folded part. Unfortunately, getting this one on him and taking the picture pretty well ticked him off, so we'll get pics of him in the other tomorrow morning.

posted by Erin @ 11:02 PM 2 comments

So this morning I called the hospital and asked again about the yeast culture and the confusion about the positive/negative results that the nurse told me about yesterday. Apparently, the nurse during the day was wrong. There have been no negative culture results. He still has the yeast infection.

I don't know why she told us that yesterday, it isn't as though we were even asking about it, she just volunteered the information out of the blue. I'm pissed off and disappointed, and I feel like an ass because I told Dr. Watts that it had come back negative, and it wasn't.

Now we're back to worrying about having to remove the Broviac, which can't be done until they can get another line in. He hasn't done well with keeping an IV, and getting rid of the Broviac is a major deal because of that. And of course, there's still the concern about where the yeast may be colonizing, or where it may start colonizing, such as in his heart...

Anyway, Dianne said he's tolerating the tube feeds well, and they hope to have him off of the IV nutrition (it's called TPN) by 8 o'clock tonight. They're taking him back to do another CT scan to check the blood clots in his Vena Cava, and as always, running more cultures.

I'm so upset about the yeast infection, and the nurse telling me something that wasn't so. I can't even put into words how angry and confused and frustrated I am about it.

posted by Erin @ 10:47 AM 2 comments

Sunday, April 02, 2006

ARGH!!

So the day nurse (whose name escapes me right now) said the yeast culture was negative, that they'd run another culture to make sure it was a true negative, not some weird false result. OK, great - but I didn't ask WHEN they'd run the second culture. So at 8pm I asked the night nurse, Vivian - and she said that the she hadn't seen any negative result on the yeast, that the paperwork she had still said positive! But the paper she showed me was from 3/31, so I'm thinking she wasn't looking at the most recent results.

That better be the deal, because I'm going to be highly pissed if there was never a negative result!

Anyway, yeast aside, he looks great! Everything is still going in the right direction, and there's every indication that we're on a positive trend. Thank God, I mean, he's been through enough already!

I had the audacity to ask today if they thought maybe he'd be home for his 5-month "birthday" and I was told that maybe I should shoot for celebrating that in PICU or in his own room, and maybe he'd hit 6 months at home...

So, basically, another month. Sheesh!
OK, I know, I know, but I'm feeling impatient today! Tomorrow is the 6week mark!

posted by Erin @ 11:12 PM 0 comments

Well, the good news (and perhaps his gift for his 4 month b-day) of the day is:

The latest culture for the yeast came back negative!!
They'll run another culture to make sure it wasn't a false negative, but it looks like we've beaten the yeast. That is extremely good news. I am so relieved! That means that a lot of complications (such as having to remove the Broviac central) aren't an issue anymore!

He's done pretty well for the 2 hour stints that he's been off the narcotics while the AmBisome runs. They'll leave him on that for several weeks even now that he's negative for yeast, as a prophylactic treatment (to prevent it from coming back - and I don't want to hear one joke about rubbers either!)

So we go back up in 20 minutes, and I'm going to run outside and enjoy this gorgeous day, and it is gorgeous!

posted by Erin @ 6:32 PM 0 comments

Saturday, April 01, 2006

The guy 2 beds down coded while we were visiting at 6. I didn't want to see any of it so I went to the other side of the crib so my back was to him. They, of course, asked us to leave, but let me tell ya, it ain't a pretty thing. Then they couldn't find any of the family members, the wife wasn't even answering her cell phone. They managed to keep him going, or rather get him going again, and he was "ok" at 8, but I could have done without that experience tonight. And the guy with the artificial pump waiting for the transplant passed away sometime today.

I sure do like the good days better - and there are more good days than there are days like these last 2. I'm glad that most of our 40 day stay has been more positive. It creates a really difficult atmosphere in CVRU when they lose someone. I mean, I've talked plenty about what amazing people those nurses are, and how involved they get - so I'm sure it effects them on a certain personal level too.

But despite all that went on around him, Nova is doing pretty well still. The biggest news of the day is that they lost the IV in his arm. Back down to just the Broviac central line, which they really want to get rid of as soon as they can. Doesn't look like that's going to happen though. He's slightly swollen today, nothing major. The day nurse said he was awake and looking around quite a bit, but he was asleep while we were with him. And they decided against giving him the AmBisone simultaneously with the Versed and Morphine, which means that while the AmBisone is running (it takes 2 hours to transfuse) he's off the narcs completely. While he was off the narcs, he wasn't showing any withdrawal symptoms, and was still calm and perfectly fine. I won't delude myself into thinking he won't have withdrawals, we already know he'll probably have to be on Methadone to kick the addiction, but it was good to know he didn't have any problems today.

They did switch the blood thinner from Heparin to... Crap I forget the name of the new one... Anyway, the new one is safer for long term use. They want to get the blood clots taken care of as quickly as they can because they feel that each clot is at this point probably a tiny little yeast colony, and colonies are resistant to the antifungals. The yeast "hides" in the clots, or, that's how Dr. Timmons put it anyway. He's so sweet - and he's a fan of the Easy Button, which can only mean good things about him right?

There's still considerable drainage from his chest tubes, and until that's taken care of, they won't consider extubating him - so we'll be trying to be patient about that. I'm really concerned about feeding problems when we finally get him off the vent. I suppose I should worry more about the fluid, the yeast, the fact that there's still some bloody residual in his lungs from the lung perforation, and the other issues for now, and not so much about extubation, but it's something that does concern me.

Oh, they're upping his tube feeds 2 mls every 8 hours... Hopefully he'll tolerate that and do well with it. The more he can get nutritionally, the stronger he should get. Recovery time, according to one of the various doctors and nurses we spoke to, is in direct ratio with the level of nutrition the child receives. Makes sense on one hand, but then, he's been getting IV nutrition all along, so I'm not sure I completely understand. I'm just glad he's getting some food in his belly. He's barely eaten for nearly 6 weeks.

Anyway, overall, a good report.

posted by Erin @ 10:50 PM 0 comments

I never know where to start with Nova's updates. Sometimes I feel overwhelmed myself with all the medical lingo - I hope you guys don't feel the same! So where do I start?
How about we start with the bald spot? Yup, a new one. The doctors want the central lines out as soon as possible, because foreign bodies tend to attract colonies of infection. So today, they removed the central line from his neck that was placed there a few days ago for the cath. Wouldn't you know, as soon as they did, the IV line in his foot went south, and they were left, again, with just the Broviac line in his chest. With all the meds he's on, one line just isn't enough, so they spent the day trying to get a new IV in. One of the spots they tried was the right side of his head. It was unsuccessful, as were several other spots - unfortunately, now he has a bald spot. I'm not really worried about it, hell, hair grows back. It's actually kind of funny. See when Scott was a kid, he was a street punk (sorry honey, but you know it's true!) and he was once whacked in the head with a brick, which scarred, and he has a tiny bald spot on the right side of his head. So of course we had to joke that now Nova and Daddy have matching bald spots.

Anyway, eventually they did get another IV in his arm, so they have enough spots for all of his meds again, for a while anyway.

He's off the Dopamine again, his vent is down to 30% oxygen (room air is 21%) and his sats are great and he hasn't desatted or had any periods of struggling to breathe. He's still pink and warm, and looking great. They're talking about getting the Broviac out as soon as possible, but I'm thinking that won't b until the yeast is cured. He's still on both antifungals for that, but no other antibiotics. They're feeding him again, but still only at 2mls an hour, just a trickle to make sure his digestive system is still functioning basically.

Aside from Nova's stuff, it was a tough night. Yesterday evening, a pediatric patient who received a heart transplant died. They weren't there long enough for us to even figure out if it was a boy or a girl, or how old they were. Then tonight we got there to find out that there was a new patient in CVRU that we never even saw that died after we got there, and that another patient who's got an artificial pump to keep him alive long enough to find a donor heart has had to be brought back nearly 100 times in the last 24 hours. As a matter of fact, we were up visiting Nova when they were "shocking" him at one point.

Then there's the baby in the bed next to Nova. We kind of check up on him as much as we can when we're up there - he's so perfect to look at, and the parents are obviously so frightened and concerned. Tonight I finally got a chance to talk to the mother for a while, and she told me that her son was only born with 1/2 a heart. I don't know anything about any such defect, no idea what it's actually called, but I cannot fathom the fight that little guy is going through, or how hard this is on his parents. I don't, to be completely honest here, even understand how he can survive something so massive. I think a lot about him, and them, and hope that the doctors and the powers that be can deliver the miracle they need.

I found out that what he has is HLHS, in case anyone else was as curious as I was... HLHS is a serious (very serious) heart condition that will require 3 surgeries, one he's had already, another at 5 - 6 months of age, and one when he's 3 years old. I've read some about it, but not a lot. There are links about it in the right sidebar there --->

So tonight, there were many tears in the waiting room. It was a difficult night emotionally. Every time someone's family member dies, or goes through a particularly difficult situation, it becomes personal. Every one of their tears is a reminder of how lucky we are, and how easily it could have been Nova that didn't make it. I just want to hug them all, to take away their pain... I'm all too familiar with what they're going through.

posted by Erin @ 1:38 AM 2 comments