2 more weeks to go...

Well, we have officially hit the panic button I think! We made a trip to Babies R Us this past weekend, just to feel like Caleb will have a few of the necessities once he is able to come home. Guess it will tie is over for now, we will have a much better idea of needs once we get Sara moved to her new room and can set up a nursery once again. Never thought we would be doing that!!

Today was another Perinatal specialist appt. at the hospital. Non-stress test went fine. My blood pressure, etc. continue to remain stable which is nice, even with the swelling in my feet and ankles. The sonogram showed that I had low amniotic fluid. They like it to be between 8-20 (I know, quite a spread, huh?!) and mine was 8.7, so the doctor was a little concerned, but did not make me come back any earlier then my next scheduled appt. (next Wed.) It has me on edge, that's for sure. It is certainly nerve racking that is really could be that low, but he said there are reasons it could have been low at that point in time that they checked it, so here's hoping it was just that particular moment they caught it low! I am now nervous that I will go next week and it will be even lower and they will immediately admit me. We will NOT be ready for that!! Oh, the sonogram also showed that his estimated weight at this point is 8 lbs!! Again, ESTIMATED! Here's hoping it truly is an estimate and they are a little on the high end of that estimate, esp. with 2 weeks to go!

Here's hoping next week's appt. will go smoothly and the fluid level will be back up into the normal range again!! I need that last week to finalize things around here!! :) Not to mention Ryan's 9th birthday on Saturday!! Happy Birthday Ryan!!

Thank you so much for your support and prayers on Caleb's behalf. We are almost there!!

Joanna

specialist, surgeon and a tour of the NICU, OH MY!!

Whew! What a day! After another two hour visit with the perinatal specialist, John joined me and we were off to meet with the pediatric heart surgeon. As with everything else, it will all come down to how Caleb does after he is born as to whether he will need any kind of surgery. The surgeon mentioned not wanting to do the complete reconstruction surgery until he is as close to 1 year old as possible. The heart will be stronger and most of the tissue they need to work with will be much better to work with then when he is first born. So even if Caleb does not need a surgery right away to put the shunt in the smaller vessel, he may need it somewhere in the first year, just to tie him over until he does have the complete "repair".

From there we got a tour of the NICU (neonatal intensive care unit). This is where Caleb will spend his time in the hospital. He will not be with me in my post labor room as he needs to be closely monitored. They will do a sonogram of his heart and keep a close eye on his oxygen levels, etc. there. So I guess we will be spending most of our time in the NICU. The hard part will be that his big brother (& sister) will not be able to see him as you have to be 12 to be allowed in the NICU. :( That will make for an interesting recovery. Heart surgeon agreed that there is not immediate need for a c-section at this point. He said to try for a regular delivery and see how he does. We just hope it does not cause him any unnecessary stress.

In the end, the OB specialist put me on the schedule for my induction to be on August 11th!! So we have 2 1/2 weeks to get ready....wheee...let the fun begin!! It feels like such little time to prepare ourselves, let alone Ryan and Sara for their time at home with grandparents...how does one write out your child's schedule as if mom was still here to take care of them?!

Pediatric Cardiologist appt. #3

Good afternoon! I have been to see our pediatric cardiologist again today...third visit for him to do a fetal echocardiogram. He is keeping an eye on Caleb's vessle sizes, as well as overall heart function. Thankfully, I can say, after laying on the extremely uncomfortable table for an hour, he said that there are no major changes. Caleb's aorta and pulmonary vessel sizes continue to remain about the same size (no major increase or decrease in size) and his overall heart function is good. He did mention one valve that seemed to be leaking some (not closing off all the way like it is suppose to), but he was not overly concerned about it. Seems to come with the "AV canal defect". He also did not have any major opinion about whether I should have a c-section or try for regular delivery...so that part is still up in the air. We will also still have to wait and see if Caleb will need any sort of heart surgery right after he is born. The cardiologist mentioned that the first two days of his life will certainly tell the tale. How well he manages to breath, how well his heart functions, etc. all on their own after he is born. So where I was hoping to receive a couple answers...we still do not have any. How he is born will be determined by how he handles the contractions, etc. Whether he needs any sort of heart surgery right after he is born will be determined by how well he does on his own once he is born. I guess we will see if the heart surgeon, that we meet with on Friday at Fairfax Hospital, has an opinion about how he needs to be born. Cardiologist also mentioned that it also may be determined by how well his non-stress tests go these last few weeks.

So, with no major changes, the cardiologist did not need to see me anymore! Yea, one doctor off the schedule for now. :) I am sure he will be seeing Caleb on a very regular basis after he is born though...

Will let you know how the weekly specialist appt. goes on Friday, followed by the meeting with the heart surgeon. Here's hoping that the non-stress test does not take as long this week. I would really like to be able to grab some lunch between a two hour specialist appt. and the meeting with the heart surgeon! :)

Joanna

Good evening! We wanted a way to let everyone know about how our little one is doing...we finally decided on the name Caleb Andrew. Thus why the blog is titled that way. :) He is currently holding strong at 35 weeks! The true test will certainly come when he is in the real world and his heart and lungs are truly tested by his first breaths. Below is how he has come to be and the journey we have been through with him already. If the long posting is not below, click on "welcome" to the left or "older post" at the bottom of this page.

Thank you so much for your prayers and support during this already hard journey!
We can only imagine what God has in store for us in the upcoming months. :)

Joanna

Welcome!

Welcome! We created this blog to help keep our family and friends updated about what all is going on with our little one. He is not in the world yet....but one more month!! :) I have recently had a couple appts. with the specialist in Fairfax Hospital who has taken over my care...well, more like Caleb's care/progress. They have gone well so far and will hopefully continue to do so. The appts. are far away and are insanely long, but hopefully I just have a few more to go! I have another appt. with his pediatric cardiologist next Tuesday where he will hopefully tell us that his vessel sizes have not changed and then it will be back to Fairfax Hospital next Friday (7/23) for my weekly check-up as well as a meeting with the pediatric heart surgeon who will eventually do Caleb's heart surgery. Below is some email updates that I have sent out over the months, just in case you need to be updated on what all has been going on in our household....

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!

Joanna & John