People who don't have kids should...

I just have to vent over this for a minute.

If you know me then you know I've had 4 kids. You know I had a hard time losing weight after Alexis and stayed in the 130s-140s after her. You know after Kayden it was easy to lose weight getting myself down to like 120-125...After Tavion it was impossible and after Isaiah I've had a hard time, from being in and out of hospitals with Kayden, stressed, etc. So after watching some videos and reading, I get sick of seeing people who don't have kids say we use our kids as excuses about weight loss, saying we have kids so we're too busy. I admit some people will use that. BUT what about people who really have no one to watch their kids, can't afford to pay for a gym membership, can't get away from doctors or hospitals because they have a special needs child, or how about the ones who flat out can't afford the fancy healthier food?! If you don't have kids you have no clue what it's like trying to lose weight after having a child. You should not judge and say we use them as an excuse. Instead of telling them it's an excuse give them a bit of different advice. Find them alternatives if they can't afford the gym, or can't afford your diet foods, or your healthier options. Or afford daycare, we aren't all fortunate enough to have a mom, dad, brother, or sister to watch our kids and sadly a lot of our friends have nothing to do with us because they think it's a disease to have a baby so we're no longer fun anymore.

I for one have decided this, I love food too much lol it's true, always have always will. Before I had kids I could eat anything and never gain a pound or show it. And even now I can eat what I want and I still don't gain weight and it doesn't show, my weight is still from after I had Isaiah, Tavion, Kayden & Alexis. I weigh myself at least once a week sometimes more out of curiosity because I'm trying to lose it in my own ways. I've been managing my portions, drinking nothing but water, I did drink a juice one day because I LOVE cran grape juice lmao, and I've been doing some home work outs that I've found online through youtube or just googling. I'm losing slowly but that's all that matters! I'm trying to get my muscles tightened back up in my tummy, because after having a baby those muscles get lose and flabby lol google it it's true, or you already know from experience. I've lose about 3 lbs in a month and most of it came off in the last few weeks when I've actually became serious about giving up soda. Over the last few days I have been eating smaller meals 5 a day and sometimes because I am so busy during the day it's not even a meal it's a grab and go snack or like a granola bar or something haha! I'm going to prove all these psycho's wrong that you don't need a gym to lose weight, you don't have to buy expensive diet foods to lose weight. You can do it at your own pace and in your own way. But you do have to commit to it, especially doing like I'm doing, it'll definitely take longer but you don't have to give up food. Yep I still eat ice cream, I really don't eat sweets anyways but I've went to a couple birthday parties and Alexis' so I've had a piece of cake, so don't give up stuff just don't eat a huge piece like you use to. I still don't think I've ate more than I ever have. I eat about the same, I've just got to get rid of the baby weight I never got off before. It's hard when you're stressed because stress can keep weight on you. I've been trying to keep myself more relaxed and not stress over a lot. But it's still hard because of Kayden, I stay paranoid about my other kids and it's still hard without my baby. My rant is done. But I hope these people who don't have kids will stop judging us and saying we use them as an excuse, you don't know what it's like so chill the eff out. Oh and if you have 1 kid you don't know what it's like having 3 or 4 kids so you probably shouldn't judge the ones who have more. Having one kid that doesn't have any special needs is a piece of cake, unless you have no baby sitter, etc. If you've got 1 kid you can put them in a stroller and go for a walk. So this is mainly for my fellow mommys who have 2 or more kids, and have a harder time.

Just another hard night.

Today was such a good day, I felt like I got a lot accomplished even though I didn't do a whole lot lol! I mean I did what needed to be done. Well it went downhill at about 5pm. All the kids decided they just didn't want to listen to me so they went wild, my mom is sitting on the couch doing nothing because she doesn't feel good so it was 4 against 1!! And ya know if you actually KNOW my kids and Lyndsee then you know that they can get H Y P E R!!!!!!!!!!! Well anyways fast foward, Isaiah decided he wanted to pull over the table we have a few pics of Kayden on and one of those green plants that someone sent from his service...So the dirt went everywhere on the carpet, the table fell and hit Isaiah, he may have a black eye maybe not. But it just upset me because I tell them ALL the time, leave the table alone, don't touch it...but they don't listen. I know Isaiah doesn't know any better he's not even 15 months old. But it's just upsetting because it's Kayden's stuff. Even one of his little puppy stuffed animals sits on it and it got dirt on it. Oh but before this, Tavion knows better than to mess with Kayden's stuff he hasn't done it in awhile, tonight I went in his room because I kept hearing something and he is under Kayden's bed pushing it up with his feet!! UGHHHHH!!!!!!! I know Kayden's stuff won't stay out forever, and I know kids will be kids. But Tavion has been told and told and he's left it alone for so long and tonight he just decides he wants to push my buttons. Thank goodness it's bedtime and they are all sleeping...EXCEPT TAVION!!! Go figure, he doesn't know what sleep is!

So tonight I've been having a hard night, I'm missing my baby so much!! I can't understand why God chooses some people to lose their child. Does he think we're not good enough to take care of them or something? I hope not. I try not to think that but sometimes I do and I can't help but cry!! I try to hold the tears back but sometimes they come out without notice...My heart still aches for him, I physically feel it. I just wish I could find my place again, I once knew who I was and now, I feel like I'm lost inside a cave and I can't find my way out, and no one is coming to find me!! I can't understand this, God took my baby home, but yet he isn't helping me any with this job thing, or getting out on my own. That's discouraging. And I can't help but question my faith anymore or question anything anymore. I mean geez it's been pushing 7 months since I've been searching and applying, I've applied to SO many places I can't remember where all I've applied. How sad is that?! Ugh! My heart just hurts so bad, I know I can't live in the past, and the future hurts to much to even think about, so I try to live in the present but some days that's even too much to bare. What am I suppose to do?! Go to therapy?! WTF for because I miss my son?! No sorry that won't help nothing is going to help me because a fucking therapist doesn't know wtf I'm going through, only someone walking this road knows how I feel and can relate to all of this!! Anyways this blog will be continued on another bad night, which I know I'll have ♥

Think before you speak...

I've got to vent a little. So a girl left me a wall post on facebook saying about Kayden after I told her he went to Heaven waiting on a heart transplant. She said 'poor thing you should have brought him to chb'. For one thing my SON is NOT a 'thing'. Another thing, do not tell me what I should or shouldn't have done. I already have enough guilt as it is. I do feel like I failed my baby some times, especially on those extra hard days.

Let me try to break down Kayden's journey for you into numbers...it may be a little hard because I'm super pissed and upset over this insensitive comment.
1.November 2010--Kayden had a cath, the results were not good, I probably blogged about this, but let me refresh some memories--His pressures were too high to be a candidate for transplant (I didn't know this until June 2011). Options were:Valve repair, valve replacement, transplant. I was told, he was too high risk for the valve repair or replacement and that Kayden would probably not come out of it. I was also told his body was hardly pumping enough blood to his body for him to survive...UVa wanted to get a second opinion and sent his results elsewhere.
2.Children's Hospital Boston (CHB) is the ONLY one who responded. The cardiologist called me personally and explained to me about Kayden's heart and what they thought they could do to fix it, he said there was only about a handful of people in the country with a heart like Kayden's. I guess because he had DCM and the tricuspid valve issue, he had some minor things going on but nothing that really damaged his heart or that I know of.
3. Boston changed his surgery date 3 times, first it was suppose to be in April 2011, then May 2011..And finally when Kayden got hospitalized in February 2011, his cardiologist in Roanoke flat out said he was worried Kayden wouldn't make it until May if he didn't have the surgery, SO he e-mailed the cardiologist in Boston and they changed his surgery to March 2011.
4. He had a cath and MRI done then. The cath results were actually better then, than they were in November. Kayden's heart rate & BP dropped during the breath holds of the MRI, thankfully he made it through it okay. And he was okayed for the surgery on March 17, 2011.
5. April 2011--He was hospitalized 5 days after coming home from Boston. He developed a pleural effusion and had to have a chest tube in for another week. After that is when Kayden went downhill again.
6. May 2011, his cardiologist in Roanoke, finally said he needed to be on the transplant list and e-mail UVa. We got the appointment at UVa on June 14, 2011.
7. When we went in Kayden was in cardiogenic shock (excuse my spelling), he went straight to the PICU after the clinic visit, he pretty much immediately got sedated, put on the vent, and got his PICC line placed. They were worried about him needing to be put on ECMO then or even not being able to come off the vent.
8.UVa did take 2 weeks to get all the tests done and blood work back before placing him on the list. They DID tell me if his liver or kidneys failed we'd have to find a way to get him to Boston. BECAUSE UVa said they would not attempt to take his glenn down and put him on ECMO, because it'd be heroic. So Boston would be the ones to do that.
9.After coming back from the cath lab Kayden had a hard time and didn't fully recover from it, after being taken off the vent a little over a week after the cath, he took a nap & woke up completely out of it. He couldn't control his movements, he couldn't talk, couldn't focus. NOTHING. UVa had no idea what happened and after he'd passed i looked through some papers I have and it said it appeared to be a mild  case of chorea.
10. Kayden became an Angel waiting on his heart at UVa, should i have taken him to Boston because he was a high risk case?! Maybe. BUT when you're faced with that kind of decision, you're head isn't thinking like it should. I didn't put all these pieces together until after Kayden went to Heaven.

I would rather have my baby back than to face all of this. I have to live EVERY DAY UNTIL I DIE WITHOUT MY BABY!!! If you haven't lost a child then you probably should always watch your words because you may not mean them to come out like it sounds...but the way it sounds could be VERY RUDE and insensitive.

Thanks for listening to me vent! Sorry if I missed anything but I had to explain this to people who have no idea! Kayden knows I did all I could for him, nothing could change this. Doctors are not God, God is the only one who has the ultimate say so. HE had the power over my sons life.

CHD Awareness--Faces of CHD: Bryana's Story

On Nov. 9, 2010 My husband and I welcomed into the world our 3 beautiful daughter Bryana Faithmae Crews. She made the perfect addition to our already wonderful family. When she was born we had a lot going on our 2 other daughters (age 9 &5) were both playing t-ball and softball.  We thought we had yet another perfectly healthy daughter until Nov 11 when we where suppose to be dischared.

 Our whole world caming crashing down. They said they heard a murmur in her heart and Wolfson's Children's Hospital wanted to do an ecko on her. At 2pm they said they were going to release me but Bryana was going to be transfered to Wolfson's Children's Hospital. They took her to the NICU to get ready to be transfered. They had to put an IV in her head and that just killed me. Around 530pm they came and got her. We took our older daughters to my parents so we can be with her. When we got there they had done some test but no answers yet. They said we wouldn't know anything till the morning. When morning come we talked to the cardiologist and said that she was basically born with half a heart. She was born with one chamber instead of 2 and 2 main veins coming out of the heart instead of 4, and her aorta was turn the wrong way. I was told all the medical names but I just can't remember them. We were told that she will need in the future at least 2 open heart surgeries and possible 3.

 On Nov 15 we were finally able to take our daughter home. She was doing great. we didn't have any monitors or anything hooked up to her. On Dec 15,2010 She had her first cardiologist appointment since we came home and it was not good. Her oxygen was in the high 50's low 60's. Of course they wanted to admit her into the hospital. When we got there they put her on oxygen and scheduled a cath in the morning. When they did the cath they found that her veins from her heart to her lungs was very narrow and there was not enough blood flowing to the heart. They scheduled to put a shunt in on Mon Dec 20, 2010.

The morning of Dec 20, 2010 came and I felt helpless that she needed help I me as her mother couldn't help her. When I had to hand her over to the sergeon and they went behind the doors I just thought I was going to died. I wanted to be in there getting cute open and hurt and not her. They had her back in the OR for 5-6 hours (what to me seemed like a life time.)  When they were done nothing had us prepared for what we were going to see. She had a breathing tube, she had all kinds of IV's coming out of her and hooked to so many  monitors. All We could do was to touch her. I so wanted to crawl in that bassinett and hold her and take the pain from her.

She came out of the PICU on thurs Dec 23. She was doing reat. We were going to get to go home on Christmas morning but she had a little fluid by her left lung and her ribs. They gave her some medicine to help it go away. The next day they check again and It was gone. we got to go home. And Eryn and Jayda didn't want to Christmas until their baby sister came home. So we all got our Christmas present a day late.

She was doing great when we got home. Then when she went back to the cardio on Dec 31 they had found that the fluid was collecting again. She was amitted again. They put a chest tube in and found that she had chyle. On Jan 5 she was released on a no fat diet.

 We were so glad that she was home and doing great. On Aug 3,2011 she had her 2nd open heart surgery. It killed me once again to hand her over to the surgons again. I felt that I had air taken right out of my bady. This time it lasted bout 6 hours. When we went into see her this time we were somewhat perpared for what we were going to see. When we got in there she was not on a breathing tube. When she hear her Father and I she sat straight up. They had to sadate her. She had the IV's and all coming out and hooked up to monitors again. This time she was in for 9 days and got to come home. She was home for awhile had great Dr. appointments. In Oct 24 she was amitted again because it looked like she has chyle again. They put a chest tube and when it was all drained she went homw Oct 31.  The next week  Nov 7 she went back to the cardio and the fluid was back again. She was amitted and another chest tube was put in.   She spent her 1st Birthday in the hospital. on Nov 11 they put her on no food or fluids. She was given her nutions threw an IV. She was like that for 14 days. She went from being 13lbs11oz to under 13lbs. The surgoen finally decied to do emergency surgery to fix the leaking on Nov 22 she had the surgery. At first it looked like it didn't work because she had alot of fluid come out the day after surgery but on Thanksgiving it had slowed down. Then she was able to come home on Nov 29 once again on a fat free diet.

This year we spent Christmas and New Years home and so greatful that she is doing wonderful. She is going to have her last surgery which is the fontan Summer of 2013 then we should be done.  She has taught all of us that know and love her that anything is possible. Always believe and pray and prayers are answered. She is a happy 15 month old doing just about everything a 15 month old should do.

Happy Heart Day!

HAPPY HEART DAY!!! So today is the end of CHD awareness week, but it doesn't end with the stories, I have one more I got today that will be posted tomorrow =]! I'll continue to help raise awareness throughout the year. The balloon release went well today, I had a few balloons pop but it's ok, I can read the names and will put their name on the wish lantern tomorrow night! It's sprinkling so I couldn't do it tonight =[! Oh well, it's still going up so it doesn't matter lol!!

Today is Kayden's 7 month Angelversary! I miss that little fella so much, I don't think some people quite understand just how much I truly miss him. I want him back so bad that I can feel the ache and the pain inside my body. I know I've got a broken heart, I feel it every time I hug his Mickey Mouse pillow and kiss it goodnight, or kiss his picture goodnight. I want to just note a few memories about Kayden, or a few things he liked. I've done it already all over my blog. But I want to do it here so I can eventually write it down somewhere. I want to NEVER forget things, I want to be able to tell Lexi, Tavion, & Isaiah about him.
♥Kayden LOVED to cuddle when he was a baby, he loved blankets all of his life.
♥He was a very bald baby, lol he had almost no hair but it was so cute
♥He hated having his diaper changed. He'd kick me all the time
♥Mickey Mouse, Spongebob, Lightening McQueen and Mator were his favorites. Oh and I can NOT forget Toodles.
♥I loved hearing him say 'OHHHH TOOOODLES'
♥3 words 'Go way me'
♥He had the cutest little laugh that could brighten anyones day
♥He went to speech therapy and learned so much, but hardly ever talked (somedays)
♥Kayden had 6 surgeries in his short life
♥He hated shoes
♥He didn't like sweets
♥He loved chips, bacon, and sausage, oh and pepperoni's(roni's)
♥He loved gravy with anything, especially his fries.
♥He'd eat fries with A1 sauce lol. He'd also eat ketchup and mustard by itself (eww)
♥His cardiologist in Boston played cars with him the day we left the hospital
♥He didn't like being around a lot of people
♥He loved going to Wal-Mart =]

I'm gunna try to document more about Kayden so I will always have things he liked, or he did, or whatever somewhere. lol. Did that make a bit of sense?! Anyways it's late and I'm going to bed!

CHD Awareness Week--Faces of CHD: Alexia's Story

I was born December 29th, 1985 at 2:35 am. I was born by C-section at 42 weeks gestation I was prenatally diagnosed with hydrocephalus and it wasn't until I was a day old that I was found to have Double Outlet Right Ventricle, Multiple VSD's and Mild Pulmonary Stenosis as well. At 2 days old I had the Pulmonary Artery Banding dnoe. I was hospitalized for a month after that. At 6 months old I had the Blalock-Taussing shunt put in and I was hospitalized for 2 weeks following that surgery.

When I was 18 months old, circumstances changed as did my living situation. I now was in an area that had access to better medical care. I was now seeing a cardiologist in San Francisco named Dr. Stanger. Shortly after I began seeing him, he told my mom and grandmother that there was a pediatric cardiologist in Sacramento and that I should be seen by him because it was much closer and much easier than making the 2 1/2 drive to San Francisco every 6 months.

So by the age of 2 I was seeing a new cardiologist in Sacramento. He was kind and patient and dealt with the incessant questioning by my grandmother. In more recent times it was a joke in out family that Dr. Juris was scared of my grandmother. My mother allowed my grandmother to ask more of the questions when the three of us went to the appointments.

When I was 4, it became clear that it was time for me to have my Double Outlet Right Ventricle repair. It wasn't clear what options the surgeons down at UCLA would go for. So in June of 1990 we drove down to UCLA with my grandmother's husband and my uncle. I had a cath done to check the pressures and so that the surgeon who would be operating no me had an idea of my cardiac anatomy. After the cath my family had a meeting with Dr. Hilel Laks who was to be my surgeon. Dr. Laks was torn between the Fontan and a new experimental surgery that he thought I would be a good candidate for.

So we were sent back home so that he could do his research now that he had an idea of what my cardiac anatomy looked like. In early August we went back down to UCLA where Dr. Laks told us that he though I would be a perfect candidate for the experimental surgery he wanted to do. Apparently I was his ginuea pig.

My Double Outlet Right Ventricle repair surgery took 10 hours. The recovery from this surgery was rough and I coded twice during the 3 week long hospital stay. But finally the day came to leave the hospital and go back home.

The kitten was a gift from my grandmother's husband after my surgery at 4 1/2.

When I was 6, I was kicked out of the special education class I was in. My teachers said that I was too bright and that staying in this program would severely limit me. The goals that were set for me at IEP meetings were being frequently met and exceeded.

When I was 8 years old I caught pneumonia in February and I missed 2 months of school. Thankfully I was able to remain at home with no hospital visits. Two years later when I was 10 years old I caught pneumonia again. This time I was home for a month.

Also this time my mother attempted to admit me to the hospital. My mother took me to the registration desk at the hospital and told the lady behind the desk that she (my mother) was admitting me. At this time my cardiologist, Dr. Juris happened to walk by. He asked my mother what she was doing and my mother told him that she was admitting me. He told her that she cannot admit her own child. He listned to my lungs and my heart right there in the middle of the hospital lobby. He told my mother that I had pneumonia and that he would call in some meds for me.

About  6 months later I went in to see my cardiologist and he ordered a cath. After the cath he told my mother that I need an aortic valve replacement. My mother told him no and that I was doing too well for her to put me through that. My mom lived in denial until I was 12. Then it was almost too late.

Winter break during sixth grade was hard. I was filling up with fluid. I was coughing a dry cough and dry heaving. I was also sleeping on 6+ pillows because I couldn't breathe. I was also sleeping in a strange fashion. I would sit Indian-Style and then leave over with my hands tucked under me. I knew it was heart related but no one else seemed ready to believe that. I underwent test after test to see if anyone could figure out what was going on. There were doctors considering a GI issue so I was hospitalized for that. Tons of bloodwork was also done.

It wasn't until the beginning of February that I voiced my thought to my grandmother. We were walking the halls. I was in my wheelchair with my grandmother pushing me. I said "What if it's my heart?" My grandmother immediately said "It's not your heart" on February 5th, I proved I was right.

I was drinking fries and a chocolate milkshake when I aspirated. The last thing I remember is doctors shouting orders. They were demanding drugs. I was on the vent for a week before the surgeon came to my family and said that I need an Aortic valve replacement on that day or I was going to die.

That afternoon I was rolled into the OR 12 hours later I came off of the OR table. I was in no means out of the woods yet, but I was stable. I continued to have problems. My sats were so unstable that I couldn't be moved without my sats taking a significant nosedive. As a result of that I developed a Stage 4 bedsore on my tailbone that will never fully heal. I was on the ventilator for a month and the first solid food I ate when I was finally off the vent was green grapes. I don't think green grapes had ever tasted that good.

2 weeks later, on March 19th I was discharged. I could not return to school until seventh grade but thanks to the kindness of my teachers, as well as my grandmother's tutoring I was not held back.

When I was 16 I began dating an old friend of mine. It was a whirlwind romance and he proposed after 2 months together. A week after he proposed, I called it off knowing that I was no where near ready for marriage. We dated for a little bit after that but then we called it quits. We still remain good friends to this day.

In June 2005 I was told by Dr. Juris that I would need a second Aortic Valve replacement. I was heartbroken as I was told when I was 12 that the first replacement should last 10-15 years.  However, I was starting to experience symptoms that were indicative of heart failure. Dr. Juris wanted to do this at that point because my right ventricular function was still really good.

June 13, 2005 I had my heart cath. Because I was second case I had to stay overnight at the hospital. In the weeks that followed it was decided that we would go with a mechanical valve this time because the valve life was 25-30 years. the only drawback was Coumadin and the frequent blood draws that I would need. I decided it was worth it to avoid surgery for a long time.

They attempted a Cardiac MRI during the month of June as well but I freaked out. They had had to adjust the leads on my chest several times and then push me in and out of that tiny tube multiple times. I informed the techs that I was going to throw up. They got me out of there and then I sat up and the room seemed to spin. I was a hysterical mess. I was crying and begging them not to make me go back in that tube. Even after a Valium I flat out refused to go back in. The next day I had a Cardiac CT and the only issue there was the techs wouldn't listen to me when I told them where to put the IV in for the contrast dye to be administered. This resulted in nearly 30 minutes of sticking me. Finally the radiologist himself had to stick me himself and he got me on the first try.

Monday july 11, 2005 I arrived at the hospital at 5:30am and by 6:30am I was ready and waiting to get going. Of course I didn't get moving until 8:00am. I don't remember rolling down the hallway to the OR at all. The next thing I remember it's Wednesday and they are pulling chest tubes. I didn't get the second tube removed until Saturday along with the urine catheter. The following Tuesday, just 8 days after surgery I was released. It was my shortest hospitalization following surgery and I would have been out sooner but some old arrhythmia issues had resurfaced. It took me several months to get my energy back but I finally got it and I felt better than I had in a long time.

It took me a long time to figure out what I want to do with my life but recently I have come to the realization that I want to teach preschool. I am very close to that goal already and I look forward to being able to make a difference in a child's life nad in the lives of their families.

CHD Awareness Week--Faces of CHD: Faith's Story

Today's story is about a very sweet little girl who fought HLHS. Faith's story is amazing, this story touches my heart to no end. Kayden's birthday is on December 21. As you guys know his last birthday with us was December 21, 2010. At the end of the story please read more of what I've wrote so you'll understand what I'm saying =].

I am the luckiest Mom ever. Faith was and always will be the most amazing little girl that ever lived and my husband and I consider ourselves to be so blessed to have been her parents. Faith could light up a room with her smile and made it her personal mission to make everyone she came in contact with laugh. She was more compassionate and loving than any other two year old I've ever met and our lives are better for having  known her.

My pregnancy started out blissfully normal. I had no morning sickness, gained very little weight, felt great. When we found out we were having a little girl in May of 2008, we were thrilled. When I went back to my doctor two weeks later, she said they were concerned the baby might have clubbed feet and to go see the high risk specialist but that it was no big deal. The high risk doctor was going to be on vacation for a couple weeks and, since we were told it was no big deal, we scheduled the appointment for about 4 weeks later when I was 26 weeks pregnant. We never, ever thought there would be something wrong with out little girl and saw it as another opportunity to get more pictures of our little princess.

On June 24, 2008 we went to the high risk specialist and our world turned upside down. The ultrasound took forever and then the doctor told us he thought the baby was missing part of her heart. He said in his career, he had only seen one other case like ours, of a woman who had been in a few weeks earlier. The doctor called a friend of his down at Columbia University Medical Center in New York City who set us up to come down the next day to be evaluated by another doctor. The drive to my parents' house from the doctors was horrible. We couldn't stop crying, couldn't believe what was happened. Couldn't believe that the baby that we wanted and loved so much had something so major wrong with her. Telling my family that day was one of the hardest parts of this journey since they too loved her and were so excited over another granddaughter, another niece. It was awful but we remained hopeful that maybe things were no so bad, maybe the doctor was wrong.

My parents went with us to Columbia the next day for the first of many appointments and tests. I kept hoping there was some misunderstanding but when we finally sat down with the doctor and she gave us the news....we were devastated. Our baby was going to be born with Hypoplastic Left Heart Syndrome (HLHS). HLHS affects 1 in 50,000 babies and is the most severe Congenital Heart Defect (CHD). In HLHS, the left side of the heart is either severely underdeveloped or non-existent and is 100% fatal without intervention. In our case, one chamber was completely missing, the other was so tiny it was useless and there was significant narrowing in the veins. We were given three options: late term abortion (only done in 2 states after 24 weeks pregnant--not ever a real option for us); compassionate care (let the baby die of natural causes within the first week of life); or a series of there open heart surgeries designed to redirect the blood flow throughout the body. After having an amniocentisis done to rule out any chromosomal deficiencies that would make the baby ineligible for the surgeries, we decided the only real option for us was the three part surgeries.

The day the baby's heart condition was diagnosed, naming her became our top priority. All the names we had been considering just felt inadequate now. We wanted her to have a name with strength and power to it and decided on Faith Margaret. Faith to give her strength, Margaret after my mother, grandmother, and great-grandmother. It was the perfect name for our little warrior.

Knowing our daughter was going to have a bumpy road ahead of her changed the rest of my pregnancy. I was scared of everything. I would buy an outfit, then panic and not do anything for days after. I was so afraid we were going to lose our little girl before we even got to meet her. I couldn't bring myself to set up a nursery but had a baby shower bother before and after she was born (one before as proof of our belief our little girl was going to be ok, one after her first surgery as a celebration of how well she was doing). I would cry for no reason and wanted to keep her inside of me forever, where she was healthy and thriving. We had to move to New York City two weeks before Faith was scheduled to be induced to ensure that she would be born where we wanted her to be rather than the local hospital. Everything I had planned for went out the window when Faith's heart was discovered.

I was admitted to the hospital on Sunday, September 28 and induced for delivery on Monday. Faith, however, had plans of her own and was ultimately born on Tuesday, September 30, 2008 by c-section. We didn't get to hold her, though they did take pictures of her before whisking her away to the NICU to be hooked up to different machines. My husband got to see her that afternoon but they wouldn't let me go to her until almost 12 hours later. By this point I was in full fledge panic and all I wanted was to see my little girl for the first time.

We didn't get to hold Faith until she was three days old because of all the wires and things she was hooked up to but spent hours at her bedside, talking to her and touching her. She had her first surgery when she was 6 days old (the Norwood). This surgery put in a temporary shunt to hold open the PDA in her heart until she was big enough for the second surgery. The surgery went well but that night, fluid started building up in her chest and Faith's oxygen levels dropped causing her to crash and have her chest reopened. We rushed back to the hospital at 3 AM but by the time we got there, she was stable. Faith's chest was open for the next couple days while her body adjusted. She finally was able to come home after three long weeks in the NICU, just in time for Halloween.

Faith thrived at home. She wouldn't take a bottle and had to be tube fed but was such a happy little baby. She had her second open heart surgery on February 12, 2009 and had no major issues. The Glenn operation removes the shunt and redirects the blood flow in the top half of her body. We were home in 2 weeks and Faith bounced back immediately at home. She continued to thrive, meeting all milestones and making us happier than we have ever been.

On July 21, 2009, Faith went back to Columbia for a catherization. Things did not go well. They found that her right pulmonary veins were very narrow and didn't give us much hope. For the first time in her life, we had to face the very real possibility we would lose our little girl. The doctors were grim, giving her at best 50/50 odds of having the Fontan surgery but they really didn't have a plan as to how to treat the veins other than to pray they grew. We were devastated but were not going to give up on the love of our lives.

With the help of our pediatrician and cardiologist, we found out Boston Children's Hospital had an entire department devoted to kids like Faith. Armed with our parents, my husband and I took Faith up to Boston in December 2009 for a variety of tests. When we met with the doctor, she said Faith had Pulmonary Vein Stenosis. Pulmonary Vein Stenosis is an extremely rare condition with little research done on it. Cells grow within the vein and stop blood from being able to flow from the heart to the lungs. A lung scan showed that Faith was getting less than 1% blood flow to her right lung and there was a very real chance of her losing use of that lung. We were scared but the doctors were very confident that putting Faith on an experimental chemotherapy called Cleevac could stop the stenosis. Like cancer, cells were growing where they shouldn't be and the Gleevac was targeted to destroy these unwanted cells. Faith had a cath done on December 21, 2009 to see if she'd be eligible for a surgery that would restore use of her right lung. We were the only people rooting for Christmas in the ICU because it would mean Faith would be eligible for surgery. The cath was a success and Faith had her third open heart surgery on December 23, 2009. This surgery was successful, we were thrilled! We spent a week and a half in the hospital after this surgery and took Faith home, armed with Gleevac and a plan. We were so confident this medicine was going to save our little girl.

2010 was a year filled with hospital visits for us. Once a month my mom and I would take Faith up to Boston for a sedated echo and lung scan and to evaluate the effectiveness of the Gleevac. Things were overall, positive. Faith was responding to the medicine and her stenosis was becoming manageable. She had two caths during the year, both of which were successful and Faith continued to amaze us in every way. She was such a talker! She had more words than any other two year old I've ever met and LOVED to snuggle. she was a late walker and always preferred to be carried but she could do  it and would get this little devil grin each time she succeeded.

After Halloween, things began to change. Faith began to retain fluid in her face and stomach. We asked all of her doctors about it but no one seemed concerned or have any thoughts on what was causing it. In early December 2010, her doctor decided another cath was in order to see if they could find out what was going on with the fluid. We scheduled the cath for January 3, 2011.

On Saturday, December 18, Faith started randomly screaming and complaining her tummy hurt. Her stomach was very large and distended. She would wake up in the middle of the night screaming but I would go in and giver her a drink and rub her tummy and she'd go back to sleep immediately. On Tuesday, both Faith and I were exhausted so I called the pediatrician, cardiologist, and GI doctors. Her pediatrician finally got back to me late that evening and suggested I take her to the Emergency Room at Yale-New Haven to rule out an intestinal blockage. After a few hours in the ER, we were discharged saying to give her Maalox.

Wednesday, Faith was very sleepy but I thought it was just because she was so exhausted. No one had been getting much sleep so I thought it was just catching up with her. Her pediatrician called around 3 to see how things were going and I said they were the same, Faith was still screaming, still complaining. He suggested I bring her in to see him at 5:15. At 4:45, my mom and I got ready to go. Faith was fine, she was talking, acting like a sleepier version of Faith but nothing major.

Something happened on the ride over to the doctor's office. I don't know what. She was grunting in the car but I couldn't see her because it was dark out. We got into the lobby and she didn't look right. I was so scared. Her eyes were rolled back and she was nonresponsive to me. I though she'd had a stroke and we quickly hurried upstairs to the office. When we got in the office, she seemed to snap out of it a bit and cried when I got her udnressed, sat on the scale on her own. I started to think maybe I'd imagined it. The nurse left us and almost immediately Faith's back gave out and she started turning blue. My mom ran and got the doctor and they came in and started working on her. I was holding her when all of a sudden she stopped breathing and I felt her little soul leave her body. They kicked me out of the room to work on her while they were waiting for the ambulance. I went to my mom but I knew in my heart she was gone. It is a feeling I can't describe other than to say I literally felt her leave me, I knew she wasn't coming back. We were rushed to the ER and they worked on her for over an hour before it was time to let her go.

Our world has been turned upside down since December 22, 2010 when we lost our little princess. Nothing is the same without her here. We are so blessed to call ourselves Faith's parents and consider ourselves lucky to have known and loved her. Being on the CHD roller coaster has had its ups and downs but all in all, we are better people sicne she was here and we wouldn't trade her for the world. We had our second child, a heart healthy baby girl on June 21, 2011. Hope Margaret looks just like her big sister and has so many of Faith's personality traits. We always said that if she has half the personality and spunk of Faith, we will be twice blessed as the luckiest parents there ever were and so far, that's proving true.

Faithy truly loved the world and the world loved Faithy but we know she danced with the angels now and lives forever in our hearts.

Faith's story touches my heart, she went to live with the Angels the day after Kayden's last birthday on Earth. As I was celebrating my baby's birthday praying he'd still be here a year later, another family had no idea they were going to have to let there baby go the following day. Although I knew in 2010 the possibilities, I knew there were families out there who were in the position. This just makes me so sad! Faith had to of been Kayden's little Angel while he continued his fight to July 2011 ♥

CHD Awareness Week--Faces of CHD: Sydney's Journey

Sydney is Madi's sister, if you haven't read yesterdays story please do it's about Madi's journey with dilated cardiomyopathy & transplant. Their mommy Linsey is one of the strongest mama's I've met online! She's amazing ♥


Even though all of the genetic screening that was done on Madi showed no genetic markers for cardiomyopathy, her doctors felt that it was very important to screen Sydney often to be sure that it did not manifest itself in her.
She had her very first echo at about two weeks of age in Minneapolis, and words cannot describe my relief when we were told her heart looked great.  At a little over a year old, she had another echo.  This time we did it at Mayo Clinic because we had transferred all of Madison's care there following her transplant in late 2009, and it was easier to just double up with Madi's already scheduled appointments.  Sydney was sedated this time, as she was just over a year old and was not so sure about the idea of getting an echocardiogram done.  When it was over, our cardiologist told us that her left ventricle was slightly on the large side, but that since her heart function was fantastic, we were in the clear still.
Then came the two year checkup.  On October 14th, 2011, Sydney went back to the Mayo Clinic for another evaluation.  And then the other shoe dropped.  Dr. Driscoll pulled up the echo report for Sydney and told us "Sydney's heart is not normal.  I am afraid that she also has dilated cardiomyopathy."  I have never felt so helpless in my life.  At that moment, all I could do was run.  Run from my feelings, from God, from the doctors, from my life.  I went into the bathroom and laid on the floor, sure that I was going to puke all over.  I sobbed and sobbed.  Why was this happening again?  Why us?  Why BOTH of my children?  Why, why, why?
I finally composed myself and rejoined my kids, hubby and doctor in the exam room.  I took a deep breath and asked what our plan of attack was going to be.  Was her heart function bad enough to need a transplant too?  How sick was my baby?  Why was this happening when the genetic screens on Madi came back normal?  How was I going to do this again?
Dr. Driscoll informed us that there were a few things on our side.  One, Sydney's heart function at diagnosis was at where Madi's was at its very worst.  A normal heart's ejection fraction (the measurement of the squeeze of the heart) is between 55 and 70%.  Sydney's was at around 24%, so in essence her heart is pumping at half capacity.  The heart has dilated and enlarged to compensate, so her stroke volume (amount of blood input & output) is normal, which means that technically she is not in heart failure.

When Madi was diagnosed, her heart was so bad that she had had strokes.  Sydney did not.  Sydney was perfectly asymptomatic and remains that way today.
Starting that very day, we began an extensive medication regiment for Sydney.  She takes medication that controls blood pressure and medication that lessens the workload on her heart.  She also takes aspirin to help thin her blood and hopefully prevent any blood clotting incidents.

There are plenty of kids whose heart function improves on these drugs.  We are hoping that Sydney will be one of these children.  Her latest echo showed that her ejection fraction is right around 31%.  The cardiologist said that in essence her function was the same as it has been, but to me to go from 24 to 31% is a victory.  As long as we keep up in this fashion, we should be ok.  As long as her heart function stays stable or gets better, that is.  So where do we go from here?
Well, we have submitted large amounts of blood from all four of us to a geneticist at Mayo.  He is doing a study on familial dilated cardiomyopathy.  Who knows what that will bring.  They may discover that we carry a gene that we didn't know we had.  Maybe they will map a new gene based on our DNA profile.  For now, that's all up in the air.  Not much has changed in the way of research on dilated cardiomyopathy in 50 years, so it's still a lot of flying by the seat of our pants.  Not ideal, but what else can we do?
We continue to pray.  And pray.  And pray.  That Sydney's heart function will be better and better every visit that we have with the cardiologist.  That she will not need a transplant.  

I kind of feel like after all we have been through, we deserve it.

CHD Awareness Week--Faces of CHD: Madi's Journey

I'm so late posting this today! Alexis had her 6th birthday party at Chuck E Cheese so it's been a LONG day & I've got a terrible migraine. So today's story is being taken from her mommy's blog, this little girl's name is Madi, she is a transplant recipient ♥

Madison was born on April 2nd, 2006 after a completely normal and healthy pregnancy.  She was pretty and pink, and wide awake.  All of her Apgar scores were great.  She had no breathing issues, and though she was little, she was absolutely perfect.

Fast forward to October 5th, 2008.  Madi, then two and a half, was acting funny after her nap.  She was whiny and clingy and didn't seem to be "with it."  Then my husband noticed that she was not focusing her eyes in any one place, and we got worried.  Panic struck when we realized that she could not stand up.  We quickly called 911, and an ambulance took us to our local hospital.  Once there it was determined that she would be better served at a children's facility, so they took us to Children's Hospital in Minneapolis to try to figure out what was going on.  After some tests and scans, the neurologist came in and told us some extremely shocking news:  Madison had suffered a series of strokes.  To say that I was stunned would be an understatement.  The plan from there was to admit Madi and try to get to the bottom of why this was happening, and hopefully prevent it from occurring again.  In the following hours, it seemed that time went by in a blur.  Madi had an MRI to confirm that yes, it was strokes she was having.  Then she had EEGs and xrays done.  I never in a million years expected what would come next.  A cardiologist came into Madi's room and sat down.  He informed us that Madi had a disease called Dilated Cardiomyopathy. (What's that? )  Her heart was extremely enlarged and was not functioning properly.

This bad heart function caused her blood to thicken and clot, causing the stroke.  We were told that the strokes probably saved Madi's life, as we were previously not aware that she had a problem at all.  Right then and there, our lives totally changed.  Now we had a child with an extremely sick heart.  She was pumped full of IV medications and had numerous specialists added to her team.  Our cardiologist explained to us that it was his hope that we could maintain Madi's fragile heart function, and perhaps better it, with a medication regiment coupled with frequent monitoring.  After about a week in the hospital Madi was released.  We came home with two grocery bags full of medications for our tiny little girl, and learned to administer blood thinner shots in her legs twice a day.  And life went on.  She had a few setbacks here and there, and had to be re-admitted to the hospital in February of 2009.  I was 9 months pregnant with our daughter Sydney, and Madi's heart function was so bad that her heart was barely pumping.  Again the doctors pumped lots of heart meds into her IV and within 5 days, her function was good enough that we got to go home.

Sydney was born on March 24th, 2009, and had an echo right away.  It showed a normal, healthy heart.  We breathed a sigh of relief.  The genetic testing that had been done on Madi showed no known genetic components or underlying disease, but since so little is known about cardiomyopathy's origins, it was decided that we would monitor Sydney with yearly echos.

In July of 2009, Madi's heart function still was not much better, and her cardiologist recommended getting a transplant workup at the Mayo Clinic "just in case."  After that was done, we had a major setback.  While Noel and I were at the movies one evening, my dad and stepmom had to call the ambulance for Madi, thinking that she had had another stroke.  It turns out that some of her medication had reached a toxic level in her blood, causing her heart rate to plummet into the 30s.  She was implanted with a pacemaker after her heart showed some rhythm issues, and we thought we were on the road to recovery.  Again.  This was also not to be.  Every time the doctors tried to extubate her, Madi's vital signs would plummet.  It was decided that the docs at Children's would send her to Mayo in a LifeLink ambulance in the afternoon of August 5th, 2009.  I was so lost.

When we got to Mayo, we were told that the plan was to gradually wean down all of Madi's IV heart meds and get her off the ventilator and sent home to wait for a heart.  In the meantime, since she was so sick, they would be listing her as status 1A on the transplant list.  The morning of August 7th, 2009, after 18 hours on the list, a heart became available for Madi.  (We would later learn that there were two hearts offered that day-nothing short of a miracle!)

Madi was in surgery all day long.  When we finally got to see her, she didn't look that great.. her color was awful and she was totally lifeless on her bed.  About 6 hours after her new heart was in, the bottom fell out yet again.

Madi was rushed to the OR to be put on ECMO (basically bedside bypass) in hopes of saving her life-her new heart was failing.  Thankfully, the new heart just needed a few days' time to recover, and with the help of the ECMO machine, it did just that.

We spent a total of 62 days in the hospital, and another two months at the Ronald McDonald House beyond that.  There were days when we would have six appointments.. there was always something.

Now we are two years post-transplant.  Madi is doing spectacularly.  Though she will be on meds the rest of her life, not much keeps this girl down.  Transplant is not a fix.  It's like trading one set of problems for another.  She has extreme risk of cancer, needing a kidney transplant, and maybe a new heart someday.  There are many things she cannot do because her immune system is suppressed to prevent rejection.

But she's here.  That's what matters.

CHD Awareness Week--Faces of CHD: Christopher's Story

I am not sure where to start, but I guess letting you know how I learned about CHD. It was when my youngest son was born and I was told , quote, “your son has a lousy heart.” Those words were followed by, “there is nothing we can do, take him home and enjoy him.” Okay, I am thinking, “it’s 2008, what do you MEAN, you can’t fix his heart!?” People in general perceive CHD’s to be something like a minor hole in the heart, something that can be grown into, or “fixed”. The reality is that these children, SOME of them have the option of surgery, but not without lots of risk. Christopher is one of the ones that surgery isn’t an option for. His condition of dialated left ventricular non compacted cardiomyopathy means that that when a fetus is in utero, their heart is sponge-like ?(non-compacted)?. When they are ready to be born the heart will compact and become more solidified like a muscle. CJ’s heart did not do that - resulting in the cardiomyopa?thy (weakness of the heart). It affects his right and left ventricles where it is very hard for his heart to pump and function correctly. Nothing is missing, out of place, or backwards. It’s the whole heart, all big, stretched out, and stiff. We took him home at 45 days of age and he was admitted into hospice the next day. The doctors told us that his prognosis was six months or less. We had to learn to accept that each day may be his last. It is a very hard thing looking into your beautiful child’s huge eyes and knowing he is just on loan for a short while. God is the only reason I made it through that period of time, and I never let go of my faith that God would make my baby whole and it was a win win situation for him no matter what. The footprints prayer, well that was me, God literally carried me through. I remember people saying "they don’t know how I could sleep at night". Well, in the beginning it wasn’t easy and the pulse ox was a huge comfort as I could listen to it beep and know his heart was still beating. But somewhere along the way, I grew more confident, and eventually the pulse ox got dusty and I felt peace in knowing that Christopher was going to be okay. Some people called it denial, some people called it an amazing act of faith - I tend to agree with the latter. I trusted God and with that trust came the biggest peace that is very hard to describe. We celebrated Christopher’s birthday weekly and monthly, cake and all. Eventually, his expiration date came and went, he still remained a hospice patient, and we were still taking it one day at a time. His first birthday arrived and I cannot express to you the joy I felt that whole MONTH. The day we were promised NEVER to see was here!!! We had a huge celebration, and continued to give all honor and praise to the Lord. Christopher continued to get older and when he was 15 months old his hospice nurse decided it was time to take a look at his heart (we weren’t allowed any more ECHO's) with Christopher being a hospice patient and they “didn’t want to keep getting our hopes up”. The doctor told us that his heart had slightly improved but that he was still hospice status. Two days later we received a call from him that our visit left him feeling like it wasn’t finished and he took annother look at his ECHO. He also had all of his colleagues review it and Christopher’s heart had improved so much that in his good conscience, he could not recertify him for hospice! Okay after trying to put into words how I felt on his birthday, this is even more difficult to describe. Our language does not have a strong enough word. I can tell you that God does reward trust and faith and Christopher is a living breathing example. In February 2010, it was discovered that Barth Syndrome is the cause of Christopher's cardiomyopathy. Barth syndrome is a rare, sex-linked genetic disorder of lipid metabolism that affects males. Typically, boys with Barth syndrome present with hypotonia (low muscle tone) and dilated cardiomyopathy (labored breathing, poor appetite, and/or slow weight gain) at or within the first few months after birth. Other important features of Barth syndrome include bacterial infections because of neutropenia (a reduction in the number of white blood cells called neutrophils), muscle weakness, fatigue, and short stature. Although most children with Barth syndrome manifest all of these characteristics, some have only one or two of these abnormalities and, as a result, often are given incorrect diagnoses. It is very rare, less than 200 known cases worldwide. So much that if people would hold hands from one end of the world, all of the way around, only one of those people would be a boy with Barth syndrome. There is no specific treatment for Barth syndrome, but each of the individual problems can be successfully controlled. He is now 3 years and 8 months old, his 4th birthday is rapidly approaching and I am basking in every minute with him. I still know better than to take for granted my time with him as we don’t know when god will call us home. It is a true miracle that my christopher is alive today. God is still in the miracle business. Also, doctors have to tell you what they have learned in the text books, but that doesn’t mean God or the child in question is reading that same book. I don’t know God’s plan, but I know that the least I can do is to continue to honor and praise Him, while also helping to spread CHD awareness. MORE ON BARTH SYNDROME: The main symptoms of Barth syndrome include: Cardiomyopathy dilated or hypertrophic sometimes with left ventricular non-compaction and/or endocardial fibroelastosis Neutropenia chronic, cyclic or intermittent Skeletal myopathy with general fatigue Growth delay that can be substantial until late teenage years What is Barth syndrome? Please note that there is great variability between different patients. There is also great variability with regard to any single individual over time. Cardiomyopathy and/or neutropaenia may not always be present at diagnosis and may vary with age. Boys with Barth syndrome often look deceptively healthy Major clinical problems Congestive heart failure Gross motor delay Growth delay until late teenage years Exercise intolerance, lack of stamina Risk of serious bacterial infections Risk of fatal arrhythmia Other clinical observations Fetal death / stillbirth Feeding problems Frequent diarrhea Recurrent mouth ulcers Hypoglycaemia, especially during early childhood Characteristic facial appearance (large ears, deep set eyes, myopathic facies), nasal quality to speech, waddling gait, positive Gower’s sign High incidence of minor congenital malformations Osteoporosis Chronic headache and body aches, especially during puberty Mild learning disabilities Cardiolipin abnormalities 3-methylglutaconic aciduria You can read more about Barth syndrome at http://www.barthsyndromefoundation.org/ And you can follow updates on Christopher here: http://www.caringbridge.org/visit/cj08/mystory