This may come out a little jumbled, as I’m still trying to make sense of it myself, but this is the latest on our pregnancy updates for little Faith Joanna. Our ultrasound today confirmed serious heart concerns – Faith definitely has VSD (ventrical septal defect) and her heart is like a mirror image of what it should be, something called “isomerism”, where the heart is anatomically reversed. There is suspected tetrology fallot and heterotaxy syndrome – I’m trying to research these to understand the basics of what they are still and couldn’t even begin to explain it at this point as I’m feeling rather clueless about them myself – but we meet with a pediatric cardiologist on Monday and hopefully he can shed some additional light on what these are and what they mean… There are concerns with the large blood vessel, the aorta, as well as the pulmonary artery’s outflow. Again, we hope that the cardiologist can help shed some light on what all of this means, as well as what our treatment options are (if any) and what risks are associated with any possible treatment.
On other areas, the omphalocele has gotten smaller (this is the membrane sack outside of her abdomen that holds some of her organs) and is no where near the size it was. It appears more as a hernia at this point, so that’s a good thing! On the flip side, the ultrasound tech (whom our OB describes as “one of the best in the state”) could not find Faith’s stomach. Her abdomen is clearly outlined, but the stomach itself does not appear in any of the many images that were taken today. I’m not sure what this means long-term… obviously it affects any ability to feed our daughter, should the Lord see fit to give her life outside of the womb, but beyond that, it’s unclear if it is due to her small size (we are now 24 weeks) or if she simply does not have a stomach. I did not think it was possible to not have a stomach and survive, so this has me baffled, to be honest. My doc said we will look more at that in another 3 weeks when we repeat the ultrasound process.
Growth wise, she is measuring at about 23 weeks – a week behind gestational age, mostly due to her smaller abdomen. For a trisomy 18 baby, this isn’t a surprise, as they tend to be much smaller than the average baby. It does feel strange, though, as our babies are usually on the larger end… even those born as preemies.
There was no comment made about the cysts we saw on her brain in previous ultrasounds, but I was a little overwhelmed with some of the other information, and forgot to ask if they are still present or not. Ultimately, we wouldn’t know what kind of effect the cysts may or may not have until much closer to birth, if not after birth, so aside from leaving me wondering after the fact, it doesn’t have much impact on the decisions we are faced with.
Not surprising, considering my ever-growing size, there is an abundance of excess amniotic fluid – on the positive side, that fluid allows for the growth and development of her lungs. On the flip side, it does put added pressure on her heart, and can negatively affect her health in other ways as well, not to mention it’s a bit uncomfortable and causes a lot of pressure for me physically. If I’m this big at 24 weeks, I tremble to think how large we might get if we get close to “term”. We won’t go to full term, because of the risk of stillbirth and my labor history where I have gone into labor by if not before 36 weeks with our last 6 children. Only Caleb (our 9th) made it past 36 weeks, just into the 37th week because he got “stuck”. We will most likely deliver prior to 36 weeks to avoid a repeat of that, but we are not yet sure at what point we will need to deliver – again, with the risk of stillbirth still so high, there is no guarantee that we will even make it to a live birth. We hope and pray that is the Lord’s will, but we also know that it may not be. So we wait and see… I’m not very good at waiting, though – patience has never been my strong point.
Anyway, I’m still processing what a lot of this means… We’re having some internet issues with the computer freezing up frequently, so my search for information online is temporarily hampered… heart things should (hopefully) be more clear after we speak with the pediatric cardiologist on Monday. Other things I guess we just wait until the next ultrasound to see where we stand at that point – there really isn’t much we can do until then, to confirm what we saw and didn’t see today...
My doctor is wonderful and compassionate, and we could not ask for better care. Our God is faithful and gracious, and we know that NONE of this takes Him by surprise… none of this is a mistake... Faith is formed perfectly within His will for whatever His reasons are – I have peace in that. My heart is heavy with her diagnosis, yet we are not without hope… God is in control, and I am so thankful for that. I can not fathom how someone could get through something like this without His presence and am so very thankful that we do not have to walk this road without His love, His greatness, His mercy, to sustain us and keep us going in the day to day things as well as with the whole big and often-overwhelming picture.
Thank you SO MUCH for your continued prayers – we know God hears them and is answering, even when we cannot hear or see what those answers are or may be at this time.
No comments:
Post a Comment