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Cincinnati Babies
Pregnancy happenings (long)
I hate that I'm writing this, but I am hoping that by doing so, I'll get some extra prayers and hopefully someone who has experienced something similar.
I've been having NSTs 2x a week because Avery has a two vessel cord. On Monday, we failed the NST, which caused me to have to go to the hospital for a biophysical profile, which we assumed was just being overcautious. As part of the BPP, they did an ultrasound. The tech finished up, everything was good, but she left the gel on and said it was just in case the doctor wanted to take a look. I knew this probably wasn't good, and when the doctor came in and looked at the heart for about 10 minutes, I knew something had to be up. I was by myself because the NSTs are nothing and my husband hasn't been going to them with me.
The doc told me that she didn't think the heart was totally normal. Cue me getting hysterical and her going on and on and on ad nauseum, while I missed most of what she said. She said we needed to go to Children's for a fetal echo.
The echo was Wednesday, and they found out that what the original doctor suspected was actually only part of it, and the problems are worse. I don't even understand the full extent because I can't grasp it right now, but A will require surgery at 3-5 days of age, another at probably 6 months, and then probably one more at age 10. Hopefully this is it, since they couldn't get completely wonderful pictures since I'm so far along. I have to deliver at Good Sam now and had to transfer to another group of docs that deliver there, since mine don't. I know that sounds like the most minor thing, but switching doctors has been totally traumatic for me on top of everything else, and I had my first appointment today.
Today the doc said we could induce on Thursday since I'm due Tuesday of the following week anyway, and they won't let me go past my due date now. She said the extra few days won't make a difference with A anyway, since she's a good weight as it is, and she won't gain enough in those days to make a difference.
I am just completely terrified and heartbroken. I'll see her for a few minutes before she's taken to the NICU and then to Children's, and a typical stay after this surgery is about 2 weeks. I can't even get past the beginning part of all of this, and how much I'm completely dreading labor, since now I know everything begins after that. I was so positive yesterday, but today has been tough, and now having it hit me that everything starts next Thursday (if we choose, which I think we have) is more than I can really handle right now. I know the long term prognosis is really good and she should live a normal, healthy life, but any open heart surgery is risky, and that's terrifying. I can't fathom splitting my time between the hospital and my sweet little guy, and seeing my baby on a vent and hooked up to a million things is more than I can imagine right now.
I just want someone to tell me they've been through something similar and come out on the other side, because right now I feel like I'm totally alone. I have a totally amazing support system so I don't mean that, and I know I am lucky to have found out now, since usually this isn't detected til after birth, and we have the best hospitals in the country in our area, and blah blah blah, but none of that does a whole lot to make me feel better right now. It's just so, so tough.
If you've read all of this, thanks so much. I really appreciate it and am not trying to sound so totally negative. I was just thinking a minute ago that I feel so sorry for the "me" of Monday, because she had no idea this was happening, and I was so content with life and thinking this was another normal pregnancy and that we'd have our little girl here and healthy in less than two weeks.
Please don't mention anything on Facebook. Plenty of people know, but I don't want the whole world to know, for various reasons. I'd really appreciate the support here, but I don't want everyone I've ever met to be talking about it right now.
Brady 7/29/2009
Avery 4/1/2011
This discussion has been closed.
Re: Pregnancy happenings (long)
Sending big huge hugs your way. I know you're not alone and that others have gone through this, but that doesn't make it any easier. I pray that everything turns out ok.
Talk to hannah (hannah&ben). All of her kiddos have a heart condition of some degree, and I'm willing to bet she has some words of wisdom for you.
GL and I'll be thinking of you and praying for the best possible outcome.
You guys will definitely be in my thoughts. I know I don't have anything to say that can help, other than I'll be thinking about you guys all week.
My coworker had a son in July that has heart issues, not detected until after he was about 1 month old. He went through a lot of scary episodes and stays in the hospital (no surgeries yet), but so far he's doing amazing.
You definitely have the support here.
I'm here for you. Literally. I work at Children's and I'm here 5 days a week. While I don't understand what you are going through I would be happy to help in anyway that I can.
Feel free to email me and I'll pass you my contact info. melissa.a.osborne at gmail dot com (make sure you put in dots)
First - I'm thinking & praying for you!!
Second- I don't have experience with surgery/etc. but I do have very current experience with Good Sam's NICU from Nolan's stay as a preemie! All I can say is that it is a wonderful/awesome NICU & the nurses are amazing!! Hang in there!!
Oh my goodness, I am so sorry that you have been hit with this news so late in the pregnancy. It sounds like the docs at Good Sam and then at Children's are fully prepared to do everything necessary to help keep both you and baby Avery safe once she arrives. I didn't see DD until 15 hrs. after she was born due to my HELLP syndrome complications, her prematurity, and her transfer to the NICU. However, we were able to bond in our own special way once I gained strength to visit her in the NICU. I know my experience is nothing like what you are going through now, but I just want to let you know that I am here to offer you support. Thursday is my DD's 3rd birthday! I will certainly be thinking and praying for the best possible outcome for both you and Avery. Please keep us updated, and sending lots of hugs your way.
lots of thoughts and prayers Garri, YGM
First, big big hugs!!
2nd - are you talking about transposition of the greater vessels by any chance? If so, my cousin went through it, but she didn't know until after her son was born. The story has a very happy ending if you want to hear it...
((hugs)) I cant imagine how terrifying this must be for you especially so close to your delivery. We didnt have that same experience but we did have an experience of having a baby with health issues in-utero and expected health issues after delivery. We had the NICU team in my delivery room and were prepared for a long NICU stay, etc. That being said--try to look at all options, while yes, there is a possibility that your baby will have the heart issues and need the surgeries as expected BUT there is also a chance that the baby wont! Ultrasounds arent 100% especially the further along you are-- we were told Nicholas would almost without a doubt be in the NICU for at least 2 weeks...we went home 4 days after he was born with no NICU stay. He surpassed the odds, didnt have the health issues he thought he would have, etc. I would definitely prepare yourself for what they are telling you to expect but try to also remember that dr's cant see in the future anymore than you can. You are going to be in GREAT hands, I am assuming they transferred you the the Tri-state MFM's at Good Sam who are FANTASTIC doctors and the nurses at Good Sam are wonderful also (my SIL Katie is a L&D nurse there).
You will be given the strength and grace you need exactly when you need it-- it may seem overwhelming and impossible to handle now but when the time comes you will just do it. You will do what you need to do, you will power through, you are a strong wonderful mom to one awesome kiddo already and you will be a strong wonderful mom to baby #2! I will definitely be keeping you in my T&P and I will tell my SIL to keep an eye out for you next Thurs. I highly recommend her as a L&D nurse
You can do it! I am hopeful that everything will turn out for the best and that you will look back on this experience still in a positive light, you will look back at your delivery and remember the good stuff and remember that this was the day you gave life to a child-- not remembering the hard, scary stuff. GL mama!
Mom to Lily Gayle 4.25.06 Charlotte Kathleen 3.27.09 Samuel Thomas ~8.4.12~
I am so sorry you are going through this. i know what it is like to go into delivery, knowing that your daughter will be headed for the nicu. while i do not have any advice about the surgery, i will say, that when it comes to the nicu stay, be kind on your self. it is okay to grieve. and, if the wires and tubes begin to scare you, ask your nurses to explain them. knowledge helps... a bunch. we are currently at childrens nicu. if you ever want to talk or need someone to eat lunch with, dont hesitate to email me. merda.ara at gmail dot com.
also, i wanted to let you know that i get it. when people say that childrens is such a great hospital, i just feel like telling them, thats not the point...
I will definitely keep you and LO in my prayers.
We didn't have anything like this but a friend of mine has a son with a congenital heart defect and she is a very vocal advocate if you want to speak with her she'd be happy to! Her son was treated at Vandy as she is in Nashville and I can't tell you exactly what he had, but again I know it was heart related.
Another good friend found out her baby had kidney issue in utero and was told no big deal. At the age of 2 he had to have his kidney removed at Children's. I was shocked when not even a week later he was running around and playing iwth kids like normal. Kids/babies are SOOOO resilient!! They are able to take the blows and punches that adults can't and unfortunately I think a lot of times as moms we take it harder than they do.
Lots of prayers coming- and also I am a SAHM so if you need any help I can give even though I am a stranger please let me know.
Oh, Garri. I'm so sorry that your heart is heavy. I just want to give you a big hug and tell you that everything will be okay. I wish I could do that. I wish I knew. Take it one day at a time, try not to get overwhelmed. Focus on the things that you can control (laughable, huh, since motherhood seems to be one uncontrollable event after another, but still...).
Above all else, please know that we are here for you. Let us know how we can help.
Photo by Melissa Nicole Photography
think of you and Chris
I am hoping for a smooth surgery and recovery for little baby A, You have all my thoughts!
Savannah
Callista
Baby Trail Blog
"Someday we will look at our babies and know it will be worth it. If it was easy, we would not have had our babies, the babies we were meant to have." From Amy052006
Oh Garri, I'm really sorry you got this news. That had to be a major shock to your system, I know it would have been for me.
I know there are lots of ladies on here that have been through some terrible things with their babies and I hope some of their stories give you hope. I will be thinking about you and your family, and your precious little girl, this week.
Big hugs.
Tyler Anthony arrived on 9.21.09
The Chronicles of Justin and Tyler
I am just heartbroken to be reading this. I just want to reach through the computer screen and hug and rock you. I am so sorry you learned terrifying news about your baby and I hate that you were alone when you heard it.
My prayers and thoughts are with you, your hubs, and your little girl. Have faith knowing you are in capable hands. So many thoughts with you.
I am so sorry to hear this!
If you need anything, please don't hesitate to contact me through FB.
DS #1 born January 2010. DS #2 due June 2014.
A friend's brother had something similar to this and he has had a few heart surgeries over the years and is now in his 20s.
I'll be thinking of you and praying for you that everything will turn out for the best.