CHD Awareness Week

Hi all!

I have been majorly slacking again with the blog. Shameful. ;P But what better way to jump back in than to dedicate a posting to my inspiration of the week(all the time, really. But especially this week), Miss Ava.

Let's first start with some CHD facts.

* Congenital Heart Defects are the #1 birth defect.

* Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood.


Ava was born without any complications, and certainly with no prior indication of what was going on with her little heart.











Ava was my dream come true. My healthy, beautiful, perfect little girl. She was cute, and as pink as could be. Who would of thought...

There was no indication of what was going on in little Miss Ava's body. The doctor detected a murmur, Ava wasn't eating very well(milk was coming out of her nose and she would tire before taking much in), but were reassured that everything was fine. Ava spent the night with me in the hospital, anticipating an am discharge. That morning, the nurses took Ava to, as they told me, "run just a couple of simple little tests to make sure that murmur is harmless." Hours went by, something wasn't right. We ask nurses, they don't seem to know much though. Finally, Ava's pediatrician comes by and says that we are officially discharged. I specifically asked, "So the murmur was harmless, then?" He gives us a big smile and says absolutely. Free to go home. We are SO happy, SO relieved. We ask where our daughter is and he lets us know she is on her way back to the room. He leaves the room. My husband has to go pick our son up from school. Not 3 minutes after he leaves, an older gentleman in a white coat with a very stoic look on his face and an apparent aversion to eye contact enters my room. Now, I am not psychic or anything, I don't even believe in such a thing. But I just knew. I can still feel that fear and utter sadness deep in my heart the moment I first met Dr. Van Gundy, as if it were just earlier today. He asks to come in, to speak with both my husband and I. I let him know my husband won't be back for at least 20minutes. He asks if he may go ahead and speak. I think I kind of just nodded my head and grunted.

I am a Pediatric Cardiologist. Your daughter has something very wrong with her heart. Something we refer to as Hypoplastic Left Heart Syndrome. A very serious form of Congenital Heart Disease. You have two options. Permit her to be transferred to UCSF or LPCH, or take her home and give her comfort care until she passes. Her CHD is not compatible with life. Without surgery, she will die. With surgery, there are many fatal risks involved. Her quality of life is unknown and nothing is guaranteed. I have had parents go through the surgery and later regret it, and vice verse. You have two options. I am sorry. I am going to leave now and return in a bit. Please discuss this with your husband and make your decision.

And there I was. Alone. Broken. Confused. And the most scared I have ever been, and hopefully will ever be. I tried to hold it together long enough to call my mom and try to get a hold of Greg. I somewhat succeeded. I can't even remember what I said when I got my mom on the phone, but I know it was enough to alarm her and for my husband to decide to leave Greg at the grandparents before coming back to the hospital. Once he got there, the nurse came in and gave her apologies, said she was going to shut our door and to take as long as we needed.

My sincere apologies to any other new mommies that day at Mercy San Juan who may have heard me screaming and crying.

We let it all out, and immediately wanted to see our precious little girl. Nobody warned me for what I was about to see. Not that it really would of made much of a positive impact on my mental stability at that moment.



Imagine giving birth to an absolutely perfect, beautiful, precious, special little baby. They score so well on their little newborn APGAR tests, you struggle nursing them, but love that bonding time, they spend their first night of their life right beside you. You are SO exhausted, but can't help spending half the night just staring at your little miracle. You wake the next morning and continue staring in awe, just totally smitten. You take in her newborn smell, her baby bitty toes, fingers, who does she look like, look at that perfect skin! The next time you see your baby, she is hooked up to so many machines, her umbilical cord has been cut for more access, and half her tiny face is covered in tape. Tape that is holding in her breathing tube. She is in a new room of the hospital. One you've never seen before. This room is full of tiny little babies, all hooked up to breathing machines, tubes, lines, on medications that are keeping them alive. Heartbreaking and soul crushing doesn't even scratch the surface.















As a mommy who hadn't even heard of CHD before, who only knew of defects caused by poor decisions made on the parent's part, I couldn't stop thinking, "I did this. What did I miss, what did I do wrong that put my precious child in this position?" I hated myself. I can honestly say it took months, if not longer, to get over that, for the most part. I went over my every activity with a fine tooth comb. Ava's birth was planned. I started preparing for her weeks before we actually conceived. I read every book and article I could get my hands on about how to have a healthy, and safe pregnancy. Those who were around me while I was pregnant with my diva, can vouch. I was almost neurotic about making this a healthy pregnancy. But it simply wasn't enough. What I, in my naive state, grew up believing was simply; you take care of yourself while pregnant, you make every possible effort to make that baby priority number one ideally even BEFORE you are pregnant, and you will be rewarded with a happy, healthy child. A few exceptions, for someone of my age and with my somewhat clean family medical background, highly unlikely. Never even heard of CHD. Why? Why is it that the number one present at birth defect, the number one cause for death in the first year of a child's life, taking twice as many children's lives yearly than all forms of childhood cancer combined, has little to NO coverage. And funding to match.


CHD Facts:


* The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD. Source: Children’s Heart Foundation

* This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation

* The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year. Source: Children’s Heart Foundation

* Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation

* Though research is ongoing, at least 35 defects have now been identified.

* 4-8% born with CHD have Hypoplastic Left Heart Syndrome

* 4-10% born with CHD have Atrioventricular Septal Defects

* 8-11% born with CHD have Coarctation of the Aorta

* 9-14% born with CHD have Tetralogy of Fallot

* 10-11% born with CHD have Transposition of the Great Arteries

* 14-16% born with CHD have Ventricular Septal Defects

* Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood.

* It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications.


These are our children, and they are dying. My daughter is a "happy ending" story. But Ava's story is far from over and we are promised nothing beyond the now. I have seen far too many of Ava's heart friends struggle just to live, or pass away. They all deserve better. And don't we owe it to them to help achieve that?

February 7-14 is chd awareness week. Please take just one hour this week, you pick the day, and educate yourself. Find out the symptoms and warning signs of CHD. Urge an expecting friend to ask for a pulse ox reading on their newborn, share the story of a chd warrior you know. If you are reading this blog, you know of at least one. :) Know that just because you see our babies running around and keeping up with the other children, or you can barely notice that fading scar down their chest, does NOT mean they are "cured" or that CHD's "can't be that bad." The statistics say it all.

This week, I am going to celebrate my warrior, and all heart heroes. I am also going to remember and honor those that earned their wings far too soon, and the families they left here on earth. I love respect and admire each and every one of you!

LPS

So Miss Ava had her lung perfusion scan last Friday at the hospital. We were set up with a 2:30 appt, 1:30 check in time. Ava was all sorts of smiles and happiness on our way there, even once there she was cool. Alert and guarded, but not nervous like in previous visits last year when she started crying the moment we entered the hospital. Thank goodness. She was also VERY hungry, though, and slept most of the wait.

There was only one moment where mommy lost her cool and got upset with people not doing their jobs. What do I mean? Anesthesiology comes in at about 3:30(keep in mind they were supposed to START at 2:30 and diva girl hadn't had anything to eat since dinner time the night prior), to let us know that the correct medicine for the scan had not been ordered, and someone is on their way no to deliver the proper meds from their midtown location. Okay, midtown isn't far from where we were at, at all, but I think anyone who has experience with this hospital knows better than to actually believe when they give you a time("by 4pm")for when the medicine will be on campus. Case in point, our scan was supposed to start at 2:30! It was an hour later and they were just NOW realizing they didn't have the right medicine?!!! Absolutely ridiculous. They are lucky she was asleep and "comfortable" because had she been awake and miserably hungry, we would of left.

Anyhow, the medicine ACTUALLY arrived on time, in fact it was a little early(I'd like to think my playing mama bear helped expedite things along a bit). So as soon as it was physically at the hospital they brought us back to the recovery area to a bed and got ava some anti-anxiety meds. Not only to help with the sleepy mask time, but for afterwards when she would be waking up to a bunch of mean doctors in her face. I know from past experience, this does not work much on my girlie, but, as long as it helps her fear even slightly, it's good. So then it is time to walk her to the scan room and hold her as they get the sleepy meds mask ready. As soon as Ava saw that mask she covered her mouth and nose with her hands and burrowed her little face into my shoulder. So much for the meds helping the children not remember that day's events. :/

Once she was asleep and secure, we were escorted yet another waiting area. I kept busy texting updates to friends and family and posting updates on facebook. :P Husband kept busy playing video games. :)

After about an hour and a half wait, someone came and let us know Ava was out and doing well, and that they were taking her up to the 2nd floor surgery recovery. WOAH. A place in that building I haven't ever been. I have been to the peds surgery recovery on the first floor, MANY many times. As well as the cath lab recovery, etc. It was pretty darn chaotic up there for so late in the evening! And Ava was out to the WORLD. For some reason, they gave her another dose of profolol right before they brought her back up, which knocked her out COLD. So we just waited, and waited...and waited. Finally little miss came to and we got the flip OUT of there! :)

There is always a strong feeling of accomplishment every time we leave the hospital, even for an outpatient procedure like that day's lung scan. It's a great feeling, though I wish we didn't really ever have to take her in.

So anyways, now we wait. We have a followup with Ava's cardio on Friday, he SHOULD have the results by then. I say should, because it will have been a week later and that is the whole purpose of this visit. I also say should though because I know how things go...So let's hope for some great results from the great placement of her stent and no more intervention for a LONG while. PLEASE please, please! I will update after Friday.

In the waiting room, sleepy and HUNGRY.

In recovery, very sleepy mama.

Day after, having fun at the park with our friends, the Weaver's! <3


Strike a pose, sista!

The week ahead...

Here is why I am hoping beyond hope that this week goes by slowly. We have to make a trip to UCD this Thursday for yet ANOTHER lung perfusion scan. Standard check to make sure everything is functioning well after the last heart catheter/stent placement.

Here's why this one is making me nervous. Well, more so than usual. Ava is going to be unconscious for this one. At this age this is, I am told, standard because do YOU know of a 3.5yr old who would be happy to sit perfectly still for at least 20minutes(seems more like an hour PLUS) on a cold bed w/machinery surrounding her? Yeah, me either.

So this Thursday, 1:30pm, we report to a place we know all too well in a building we know even better. It sucks. That whole hospital(parking garage included) gives me serious anxiety. I know it's this mental block I need to get over and on with, easier said than done though when you have seen your daughter go through even a fraction of what little miss had to go through in the first few months of her life before she even came home, and how much of a struggle it was to GET home.

Anyhow, enough of this Negative Nancy shtick. Ava is a strong, brave, resilient little girl. And I am somewhat relieved the she doesn't have to sit there awake for this stupid procedure this time, it breaks my heart seeing her strapped to that stupid bed terrified and the genius people in charge think offering her a lollipop and constantly reminding me that it would be best if she were calm, are helping. Wow, I sort of totally jumped ship from Negative Nancy to Bitter Betty right there. :)

Please keep Ava in your thoughts and prayers, that she has no adverse reaction to the dye or to her sleepy meds, and that her pulmonary arteries are behaving themselves, PLEASE be behaving yourselves, PA's. Thanks all! Will update after Thursday!

Oh, and on a much more positive, not to mention totally cute, note, Ava starts pre-ballet this Wednesday! She's super mega excited. YAY!

Heart Hugs always,
Jen

Please excuse the dust...

Still working on Ava's blog layout. I am making the background and header myself in photoshop, and I only semi-halfway know what I am doing. If anyone knows how to make those nifty photo buttons for your blog, please let me know! STAT! :)

Ho Ho HO!

Kind of late. But our Christmas was a good one. A super one. A magical one. Just like they should be!

The kiddos had their own Advent Calendars, of the 99 cent Trader Joe's variety! Don't judge me. One of these years(only been saying that for 9 now) I will fill up one of those super cute fancy ones with a super cute fun activity to do each day and seal it with loooove. Pfft. Like when I have grandchildren, maybe. Sorry offspring, but until then you're just going to have to settle for a piece of chocolate and a hug during the 24day countdown to Christmas. :)

We made(the kids made) a lovely Gingerbread House, and didn't kill each other in the process. Photographic proof...









We attended the Kelly Karnival at Greg's school. The kids had super fun noshing on pancakes and other breakfast fare. Followed by some fun crafts, but you can definitely tell G probably won't be asking to attend next year. Plus he said my pancakes were way "tighter" than the ones at the school. OOoh, score one for THIS betterthanschool's pancake-makin mama!



Caught!



And then trying to act innocent...



Again!




Can you tell the decorate your own cookie table was a big hit with my kiddos? I swear I feed them regularly at home...




My lovies.


We made our annual trip to Sloughhouse and picked out a rather plump tree. Then the kiddos helped decorate. And, of course, willingly posed next to the tree while doing so. Promises of m & m's played no part, swear...













And inbetween all the madness, gifts were wrapped, lights were seen, homemade hot cocoa w/marshmallows was consumed, MANY many times(by the kids, of course), baked goodies were made and delivered, and so on. Finally, it arrived. Christmas Eve. Which also happens to be my most wonderful hubba hubby's birthday! I won't disclose his age, men at his stage of the game really don't appreciate such acts. So we traveled out to Lincoln to visit Greg's side of the family and celebrate the birthday's(it is also Greg''s stepfather's birthday on Christmas Eve) We ate a most delicious dinner made by Carol, visited, played games. Then the time came for the mini's to put out cookies for Santa and his reindeer and get their shut eye on! I didn't stay up that much longer, just long enough to help Santa fill the stockings and put out the Santa Gifts. In the morning we woke up, Mama Carol made a very yummy breakfast, hubby came back from work(he's on the graveyard shift, total lameness :() and we all opened gifts. The kids made out like bandits, like they always do, and were so happy and thankful for each gift they opened. Greg and I also received some very nice and thoughtful gifts.































Later that day we came home and had the second and third round of gifts. These kids are SPOILED! :) All in all it was a really great Christmas, the ONLY thing that would of made it better would of been husband not having to work and the whole time. But this is what he does for his family, and I am forever thankful to him for ALL that he does. I am one very lucky wifey/mama. :)

And just a few more photos, for those still with me on this one...