...how the journey to mend our son's broken heart changed our family forever...
Sunday, October 4, 2009
Our first inclination something was wrong with Baby Bennett
We went in for what should’ve been an hour ultrasound on Thursday and left about 6 hours later. There's a really serious abnormality in baby's heart. The aortic valve is small (and may not actually be working at all - they're not sure) and there's a hole between the two ventricles that shouldn't be there (that's actually what's keeping the baby alive as it's not otherwise getting blood to the left ventricle due to the inoperative aorta). It looks like the heart has developed a work around to get blood flow to the left ventricle, but that work around only works so long as a valve remains open, but the valve in question is one that is open in utero but closes within days of birth. The good news is that, based on what the pediatric cardiologist saw today, she thinks we have a good likelihood of making it to term. It’s pretty early for them to tell exactly what’s going, but they’re reasonably certain it’s one of 2 things (only time will tell):
Scenario 1: Aortic Atresia with Venticular Septal Defect (Best case scenario)Everything stays exactly as it is and the body keeps pumping blood through that hole. Within 48 hours of baby's birth, they put baby on medicine to keep the valve open temporarily and within the week, baby is moved to Children's Hospital LA and has open heart surgery to replace the valve. This surgery has a 5-10% mortality rate. Baby stays in Cardiac ICU up to a month and then goes home. Someday, baby will have to have another surgery to replace the valve (somewhere between 4-5 and the teenage years). These kids are otherwise normal, completely active kids and can participate in sports and everything else.
Scenario 2: Hypoplastic Left Heart Syndrome (HLHS) (Worst case scenario)The left ventricle gets less and less blood flow and eventually stops working altogether sometime before baby is born. Within 48 hours of baby's birth, they put baby on a medicine to keep the valve open, move baby to Children's Hospital and do a more invasive open heart surgery within the first week. Baby stays in hospital a little longer than under Scenario #1. This surgery has a 10-15% mortality rate. Baby goes back at 4-6 months for surgery #2 and then at 4-6 years for surgery #3. Fatality rates from surgeries #2 and #3 are somewhere between 1 and 2%, but approx 10-15% of babies die between surgery #1 and #2. These kids go on to lead more or less normal lives, but are more sedentary due to the fact that they really have only one functional ventricle. As the doctor put it, "they're not going to be Olympic athletes" - but well, let's face it - with Dusk and my genes, this kid wasn’t going to be an Olympic athlete anyway. The doctor seems to think we'll fall into Scenario #1 based on what she's seen already, but we won't know for a few more months. She's going to follow me with fetal echocardiograms every 4 weeks and we'll go from there. The good news is that we’ll know before birth which scenario we’ll fall into.Obviously, we're stunned and (and yes, the thought “can’t we just catch a break” has run through our minds). But the silver lining in all of this is that we live in Los Angeles with really world class hospitals - and Children's Hospital LA (where baby will most likely be treated) is an awesome hospital, so we'll be in the best possible hands.
So, even though we're a bit overwhelmed, we're feeling positive and like this is something we can handle and something that can be fixed - thank God for that! But, we could some prayers for baby and us. Specifically, we’re asking for a miracle – that the problem resolves itself before birth and baby won’t need any surgeries (btw, the doctor was pretty clear this wasn’t likely to happen – hence, why we’re calling it a prayer for a miracle). And if that’s not in God’s plan, just for peace and good doctors to help us and baby through.
Thanks everyone and we’ll make sure to update once we get closer to baby’s due date and know more!
Subscribe to:
Post Comments (Atom)
Amy, thank you for sharing all this information with us on this blog. I know it must be tiring having to repeat the same info. all the time, so this is a great way to share the info. I want you to know that we are praying for you hard, and thinking of you all the time. Pls let us know how we can support you (dinners, grocery/ Costco runs, baby-sitting,,,) anything you need. Sending our love, Colin, Gina & Dylan
ReplyDeleteHello Everyone, I am Daniel Steve by name and i live in Texas USA, i will like to talk about the goodness of God in my life after so many months of trying to get a loan on the internet and was been scammed so i became desperate in getting a loan from a legit lender online. But as God would have it, i saw a comment from a friend called William Ken and he talked about this legit loan company where he got his loan fast and easy without any stress so he introduced me to a man called Mr Mason Diego who controls a firm called Diego Loan Company, So i applied for a loan sum of ($170,000.00USD) with low interest rate of 2%, so the loan was approved and deposited into my bank account in less than 48hrs, that was how i was able to get my loan to keep my broken business running and also to pay off my bills so i am advising everyone of you who is interested in getting a loan fast and easy to kindly contact them via email: { diegoloancompany@yahoo.com } to get any kind of loan you need today, thank
DeleteHOW MY RELATIONSHIP WAS SAVED BY DR BRAVE!!!
ReplyDeleteMy name is Natalie am from California, i never believe that my ex boyfriend will ever make up with me again just because of the incident that happened on a day that suppose to be his engagement night he called me on phone asking me to came and meet him at royal palm bunch hotel,that same hour on my way going there i meant an old time friend called jack will son,he was my first love during our high school days he put some pressure on me that same night but i tried my possible best to explain every thing to him that i am with some one already but he refuse to understand me and still putting more pressure on me saying that i should hangout with him,we were together all through that night,and my boy friend waited for me all through that night.but i never known all in the name of old time sake i was dealing with the wrong person jack i known before later turn into something else after having sex with me,my boy friend was hot and was very agree with me because he was to propose to me that same night but i never known of that i apologize to him and told him a lie that my father was ill that i was the only one available to talk him to the hospital,he was convince but later few days to our wedding some body from no were came and testify against me that i have been cheating on my boy friend with an evidence of a photo of that same incident that happen between i and jack. my boyfriend was very agree with me and throne me out of his house saying is over between both of us,he discovered that his ex girlfriend who traveled to Canada to visit her uncle was back he later go back to her and i held he was planning to marry her,but due to what happened i still loves him very much and i Bella can not afford to loose him to another,i sick for help in difference places but there was no solution,last i meant my friend jenny we both attend this same high school together so i shale my problems with her and she introduce me a powerful DR called Brave,Dr Brave help me in getting my love one back immoderately without any delay my ex boyfriend later came back to me with much love and our wedding was planned and we finally got wedded and blessed with three lovely kids. I Bella will forever be thankful to Dr Brave for helping me restore my marriage back he can also do the same for you email: bravespellcaster@gmail.com
Hello my child I receive your mail and I want you to know that you have noting to worry about for our problem will be solve in my temple so all I want you to do now s that I can start the casting of the spell is to get th items needed to cast the spell so once I am about to get those items from you I will tart the casting of the spell as soon I get them from you and you will see the good result in the next 21horus okay and the items are sell over here in out local market and it is going to cost you just 120usd and once I am about to receive it from you I will start the casting of the spell or your problem to be solve okay once again I want you no that you have noting to worry about or my god,s is with you okay so I will be waiting or your mail soon. That I can get the items and start the spll for your problem to be solve okay
ReplyDelete
ReplyDeleteHello, my name is Miss faith, I'm from USA. I want to inform you all that there is a spell caster that is genuine and real. I never really believed in any of these things but when I was losing Garvin, I needed help and somewhere to turn badly. I found consultant.odia spells and i ordered a LOVE SPELL. Several days later, my phone rang. Garvin was his old self again and wanted to come back to me! Not only come back, the spell caster opened him up to how much I loved and needed him. Spell Casting isn't brainwashing, but they opened his eyes to how much we have to share together. I recommend anyone who is in my old situation to try it. It will bring you a wonderful surprises as well as your lover back to you. The way things were meant to be." you can contact the spell caster on ogbonispelitemple@hotmail.com he's very nice and great.