From early April when we told our families...
John and I found out back in January that we are expecting!! This came as a HUGE shock as we never thought we would be able to have another child of our own - let alone it survive the first trimester without me taking the extra progesterone I had to take to even have Ryan!! Each day that went by, I figured the miscarriage would start any time now…but by week 9, I decided I should go and get checked out to make sure something wasn’t really going on. They did a sonogram at that point and found the tiny sack and flickering heartbeat. We were shocked, to say the least. At a complete check up, around 11 weeks, my regular OB recommended that I go for a prenatal/first trimester ‘screen’. This was to include a sonogram where they check a few different areas and do some blood work. At that sonogram, they found extra fluid at the back of the baby’s neck, which is an indication that it’s lymphatic system is not working properly. They also found no nasal bone which is an indication of Down Syndrome. This specialist recommended that I go to an amniocentesis doctor and have an CVS procedure done to see what we are truly dealing with. This brought me to about week 13 and I had to make a huge trek to this specialist who is near Fairfax Hospital. My appt. was scheduled for the Monday after the huge snow storm we received in early Feb. Luckily the roads were just clear enough for me to make that CVS appt. Sure enough, three days later, it was confirmed that this baby does in fact have Down syndrome. This test is 99.9% accurate as they draw fluid out of the area the baby is in…it is not a guess on their part by raised blood work levels or anything like that…it is fluid straight from the baby. The specialist that did the amnio also found extra fluid on each side of the baby’s neck during their exam, so that was on top of the extra fluid that the first specialist found just at the back of its neck. We still do not know what that means, besides the lymphatic system is not working like it should be…like the lymph nodes are full of fluid instead of it running through?! It can be much more severe as they can find this extra fluid in all kinds of places throughout the baby, but this one seems to just have it at the back of the neck for now. Anyway, to carry on…NO ONE, NOT any one of these doctors could tell us what kind of future this baby has, when or IF it makes it to full term. Of course, they also worry that if it does make it to full term, what kind of quality of life it will have. We went back to the first specialist a few weeks ago, just to get the fluid areas checked out to see if they were improving or getting worse, etc. They did a COMPLETE check over everything with the baby, measured bones, you name it. He came in to talk to us after 2 hours of being under the sonogram tool and said that the fluid spaces seemed to be the same, but they also found the heart to possibly have a defect now! I think the heart chambers are suppose to look like a + when all four valves are healthy/connected. This specialist says that they are looking like the top valve is not coming down to meet the others…so it looks like a hole in the heart? He referred us to a pediatric cardiologist at that point, but we have not been yet. We have had enough doctors appts. and bad news to last us quite a while…and there is really nothing the cardiologist can do at this point anyway. Anything they determine through sonogram would be addressed after baby is born. The ONLY think we do know in all this, that it is a boy. We have NO idea what the future holds…whether he will make it to term…what kind of quality of life he will have after he is born, etc. It is a completely overwhelming experience to say the least. I am currently almost 20 weeks (due around mid-August) so the reality of it all, as I start to feel him flutter every now and then, is setting in.
From 6/1/2010 - my first appt. with the pediatric cardiologist to see IF Caleb does have a heart condition...
I certainly wish I had amazing news to share with everyone…but we did not receive any. Well, unless you count the doctor’s comment that they have seen worse as good news, then that is about it. I still need to process everything in my head and try to find some extra information to pass along to you all, but we were basically told that this little one has TWO heart defects, not just one. This will require me to switch all of my attention from our local doctors to the specialists at Fairfax Hospital and I will have to have him there. He will need surgery as soon as he is born, because there are two defects to deal with and I will most likely have to have a c-section because of it all!! Both defects are typical with Down Syndrome babies, but not typical for baby to have both at the same time! Go figure. His first defect is basically where his heart did not heal up through the middle like it is suppose to – creating 4 chambers. He has two large chambers, instead of 4 smaller ones. On top of that there are two long vessels that pump to and from the heart. One of his vessels is too big and the other is way too small. So his first surgery right after birth will be to put a shunt in to keep the small one from collapsing?? Again, so much information thrown at us this morning, it is very overwhelming and I need to do some extra searching to figure out what we are dealing with here. In the end, he will need at least 2 surgeries, one right after he is born and one when he is 4-6 months old. I will be dealing with a hospital far from home and having to deal with a c-section on top of it all. Wheee….
Sure wish I had better news to share. I go back to this heart doctor in 3 weeks for him to check the size of the vessel that is too small, as he predicts it will just keep getting smaller. We certainly need a miracle here, especially where these vessels that are the wrong size are concerned. These vessels should measure around 5-5 ½ mm at this point and his small one is only measuring 3 ½. The vessel that is too large is measuring over 6. So they are very uneven. Otherwise, if we were just dealing with one of these issues, either the canal defect (heart not being in 4 chambers) or these vessels being different sizes it would be one surgery after he is a little older, but not with both of them combined. He still has a 15-20% chance of not surviving, so we are just quite overwhelmed at this point….
I just wanted to let you know that I had a second pediatric cardiologist appt. yesterday afternoon. He wants to see me every few weeks just to keep an eye on the little ones heart conditions. Thankfully, yesterday, he did not see any significant changes, especially with the two vessels that cause him the most concern and the ones that would require the little guy to have surgery right after he is born. I did learn that we are talking about the Aorta (to the brain) and the Pulmonary (to the lungs). :) So hopefully things will continue to stay stable, because if they do, there is a better chance that he will not need the immediate surgery right after he is born. He will come home with a couple medications (which he would need whether he has the first surgery done or not), but would be able to wait until the major reconstruction is done between 4-6 months to correct the vessels being different sizes at the same time, rather then two different surgeries. Thank you so much for your prayers and support through this journey!!
From 6/30/2010 when I had my first appt. with the Perinatal specialist at Fairfax Hospital who has taken over my care and will be doing the delivery...
Stress test was fine, sonogram was fine, etc. He was measuring a little big, so that is fine with them. The Dr. mentioned inducing around 39 weeks, which would be somewhere around 8/11. But she mentioned inducing/normal delivery. I questioned it against the cardiologist recommending a C-section and she looked at me like “why would I need one of those”?? So this should get interesting…guess I will ask the cardiologist next time I see him on 7/20.
I think that about brings us up-to-date. Next is a cardiologist check-up on the 20th to check his vessel sizes again and hopefully will show that they have not changed...again. Apparently, when one is small, it tends to get smaller. But hopefully/prayerfully his check-up will show that they are still the same size as they have been.
Thank you so much for sharing this journey with us!
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