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Fetal echo (very long - no way around it)
I am home. I have taken my first shower since Monday, and finally feel like a human again. On the ultrasound yesterday, they noticed that the ascending aorta, where it comes out of the heart, was dilated in a part, and larger than it should be. It is like a small balloon coming out of the side of it. It has never been noticed before, and his heart is otherwise structurally normal - no holes, 4 chambers. We had the fetal echocardiogram today, which basically is another ultrasound, except they focus on the baby's heart. Luke, of course, thought it was playtime, and was not very cooperative about letting them get the pictures they needed. The tech took some pictures, and went and got the doctor to review them while we waited there to see if they needed more. The doctor spent forever looking at them, twisting his head this way and that way, which to me was not a good sign. He scanned me again himself and took more pictures, and finally talked to us. He said he agreed with the ultrasound, that the ascending aorta is dilated and should not be. At this point, it is impossible to definitively diagnose the cause - they are taking pictures of a heart within a body, within a body. They can only see so much. They need to do an echocardiogram on him when he is born, at which point they can measure pressures in various chambers of the heart and its arteries, and get a more accurate picture of what is going on.
Basically, he said that the aortic dilation could mean one of two things. First, it could be dilated because there is a problem with the valve below it, most likely stenosis. This essentially means that the valve doesn't work as well as it needs to (has difficulty opening/closing), and this is a result of the pressure caused by that. This, while not ideal, is repairable. He could have a valve replacement, or it may not even cause him problems at all (though he did mention they don't usually see this in babies of his gestation). The other option, and the one he seemed to be leaning more toward, is that it could be a connective tissue disorder, more than likely neonatal Marfan syndrome. I was already in tears at this point, because I had suspected this, and I know the prognosis. If this is the case, Luke would be lucky to see his second birthday. I don't remember all the details of the disorder, but I know it does not have a good outcome, and if I remember correctly, babies eventually die from the extra stress of the body on the heart. Abraham Lincoln had a form of this (it is not as serious if it does not develop until adulthood) - basically, people are tall and lanky, with extra long arms and legs. The strain of the heart trying to get blood to the rest of the body eventually causes it to give out.
I have been in tears most of the time since we got this news. I did feel better after speaking to my ob. He reminded me that there is NOTHING we can do until he is born, and that yes, I can and should cry, but of course stressing about this is going to cause added stress to my body, which could put me right back into preterm labor. As far as that goes, I am on oral terbutaline every 4 hours for the next 2 weeks or more and bedrest at home. I can't work, and at home basically need to try to stay off my feet as much as possible, but I'm not confined to bed. I will have weekly scans, and I assume weekly ob appts from here on out to monitor everything.
Thank you ladies for all of your prayers. I was able to write this without tearing up, but reading through your responses to July's post, I got emotional again and teared up. You ladies are all incredible, and DH, Luke, and I cannot thank you enough for all of your prayers and support over the last 3 days. I can honestly say this has been the scariest week of my life.
This discussion has been closed.
Re: Fetal echo (very long - no way around it)
Weather,
I am sure it took a lot of strength to write all of that. I am so sorry you are going through this and I can only begin to imagine what this week has been like for you. You, DH, and Luke are all in my thoughts. Please take care of yourself as much as possible and try to rest if you can. We are thinking of you.
Weather,
I am so so so sorry that you are going through this. I know it must be hard not to stress about it, but try to stay positive. Your family will continue to be in my prayers.
OMG. I am so sorry. I have some hopeful words. DH was born with a hole in his heart (I know this is completely different). However, the point is. They told his mom that he is lucky if he makes it past 5 years old. Well... he is 29 now.
My prayers and well wishes are with you, sweetheart.
Weather honey - I am so sorry. I cannot imagine how stressful and distressing this is for you. It is times like these... when I so wish that there was something more I could do than send extremely good thoughts your way.
I hope that it turns out to be manageable (or even nothing at all!)
We are all here for you.
BF help & support * My Charts
4 Clomid cycles + 3 IUIs w/ injectables + 1 IVF = 1 m/c, 1 ectopic
FET May 2011 = BFP! Beta 1 (8dp5dt): 336, Beta 2 (12dp5dt): 2033, Beta 3 (14dp5dt): 4706
? So thankful for our little guys, born at 33 weeks. ?
Thank you ladies so much. While this is rare, I recently took care of a baby with neontal marfan, and the outcome was not good. I am trying to pretend I am not a nurse right now, because knowledge is dangerous. I was already crying, and dh had no idea what the diagnosis meant.
And let me just AW my dh for a moment - I need to take my next dose of the terbutaline by 6:30 cst. He cannot find a pharmacy with it in stock, and the only one I have been able to find with it in stock will take him a good hour and a half to get there and back because of traffic. He has been driving around town while I have been making phone calls to find it. This man has been my rock this week.
we will all continue prayers until his healthy birth and perfect echo afterwords!
(((hugs)))
OMG, I cannot imagine what you must be going through right now. I am so sorry. Stay strong, and hope for the best. You will be in my thoughts.
::hugs::
Baby #2 on the way!