Wednesday, November 25, 2009

Up Date on Vada ~ 2nd trip to Peoria ~ Pediactric Cardiologist

As many of you may have read in our last update on Vada, we went to Peoria last week to meet with a diagnostic doctor in regard to Vada's “distended” stomach. While we were there we learned of a heart “defect” and a stomach “defect”. (I just wanted to mention that I strongly do NOT like the word “defect” when pertaining to our child. She is not a toy, she wasn’t made faulty, and we can’t & wouldn’t if we could return her. God does not make mistakes and for some reason we were given this situation with Vada. We love her and will continue to do so. She is not “defected” to us, so I think they should change that term… but that is just me) With that being said (or vented) Both defects alone are indicators of Down Syndrome, and since Vada has two specific indicators we wanted to know what else we were possibly looking at. So we choose to do the Amniocentesis. The Amniocentesis consisted of two tests, a FISH (Fluorescent In Situ Hybridization), and a Karyotype test. The results for the FISH test came in last Friday, and we are still awaiting the results of the Karyotype. The FISH test came back positive for Down Syndrome. The diagnostic doctor mentioned Trisomy21, so I am assuming that is the cause for the diagnosis. In this update I am going to leave some links at the end, if you are interested in learning about any of the tests that have been done or Vada’s Diagnoses.
Today we took our second trip to Peoria to meet with Vada’s Cardiologist. This visit was not as dramatic as our first, which is a major relief! It was however a long appointment. Three hours to be exact! Two of those hours were the Sonogram/ECHO. It was straining on our nerves because through it all we didn’t get an answer to what we were looking at or for until the very end. Vada’s heart condition has been diagnosed as Transitional Atrioventricular Canal (AV Canal or AVC). In Vada’s case this actually consists of two different issues with her heart. The first being an Atrial Septal Defect – (ASD), this is the largest of the two issues. Atrial septal defect is a “defect” in the septum between the heart’s two upper chambers (atria). Meaning there is a hole in the upper part of her heart where the two chambers connect. The second problem is called a Ventricular Septal Defect (VSD). A ventricular septal defect is a defect in the septum between the right and left ventricle. The septum is a wall that separates the heart’s left and right sides. This is another hole in her heart, although it is smaller than the ASD. The doctor said if we had to choose on whether we would want the hole to be larger on the top, or the bottom, this is how we would want it. Meaning that while the holes in her little heart is NOT a positive thing; we have a better outlook on the situation because of where the holes are situated. If it were reversed, and the largest hole was on the bottom it would be something more extreme than it already is. So as of right now, the doctor said that if this continues to remain the same and not change for the worse then we can hold off on surgery until she is four to six months old. With her having Down Syndrome, it’ll probably be closer to four months, because people with Down Syndrome in general already have issues with their lungs. Plus holding off too long can cause to other serious medical conditions. The recovery on this surgery may be right around three weeks. The doctor also said that as of now she won’t need any medications prior to her surgery to help her heart out, and that in most cases this is a one shot ordeal. So hopefully she won’t need another heart surgery anytime again. After she fully recovers from the heart surgery she should be able to do all “normal” child activities. This all seems positive to us. We will be taking our fourth trip to Peoria on December 30th to meet with this doctor again. (Trip number three is in two weeks with the Diagnostic doctor)We will repeat the procedure that was done today just to make sure everything has stayed the same & then we won’t need to meet with this doctor again until Vada is born.
Justin and I are looking at today’s doctor’s appointment in two different ways. The first is we didn’t learn anything worse than what we’ve already been told. The second is that we have had one of many of our prayers answered (so far). We didn’t want both of her surgeries to be all at once. We also didn’t want them to be as soon as she was born. We are concerned for her strength, and I am saddened by the thought of our baby being so far away, in a hospital with complete strangers. So we are grateful that the heart surgery can be held off for a bit. That will give her time to bond with her family & grow stronger. The surgery on her stomach however, cannot be held off. I’m not for sure if I already mentioned this in the last update, but Vada will need to have surgery on her stomach with in the first three days of her life. The doctor told us that we could hopefully bring Vada home within two weeks after being born. Again with her having Down Syndrome, it may take a little longer. We are trying to figure a way to keep me up there for the majority of this stay. It breaks my heart to think that this is the way she is coming into this world, and I do not want her to be without me & frankly I don’t want to be without her either. At our upcoming doctor’s appointment we’ll be asking about a possible Ronald McDonald house for situations like ours, so we can afford to keep me in Peoria more often than not. If you know of anything please let us know. We would greatly appreciate it!
What we know so far…
Vada has Down Syndrome. She will need surgery on her stomach after being born, and then she will have time to be at home before her second surgery. We will learn more with each appointment & continue to post updates on Vada’s health. Please continue to keep her and our family in your prayers.

GOD'S blessings and Peace,
Tara & Justin


Atrioventricular Canal (AV Canal or AVC)

Atrial Septal Defect (ASD)

Ventricular Septal Defect (VSD)

What is an amniocentesis?

What is a Fluorescent In Situ Hybridization or FISH Analysis?

Prenatal Testing for Down Syndrome

What Causes Down Syndrome?

Tuesday, November 24, 2009

Update on Vada ~ Trip #1 to Peoria ~ Diagnostic Doctor

I am writing this to give you an update on Vada. I first want to thank all of our friends and family who have been so supportive these past couple of days. Many of you have opened yourselves up to us & we appreciate it completely. As of right now there is not a whole lot anyone can do, but pray. Towards the end of this pregnancy I am sure that it’ll become very busy & we are grateful to have all of you to turn to. Thank you for your love, your friendship and your kindness. Mostly, thank you for your prayers.
As most of you may know this past Monday Justin and I took a trip down to Peoria to the St. Francis Diagnostic clinic. About three weeks ago our mid wife, Rita found an abnormality in Vada’s stomach that had concerned her. After a second sonogram confirming that whatever was seen in the original sonogram was still there, Rita referred us to Peoria. Justin and I were pretty confident that I personally was just over reacting and that everything was going to be confirmed to be “okay” or “normal”. (Just another FYI, I personally have been a nervous wreck this whole pregnancy. There has been one concern after another. So, when Rita told us about this abnormality, I started researching immediately. Which probably just scared me more, but I am one of those people who need to know. I am impatient when it comes to finding out news, especially if it has the potential to be on the negative side & is pertaining to my family. That’s why I mentioned me over reacting. Believe me, I have been told on a number of occasions, in not so many words that I was in deed over reacting.) I wish in this case I could have just been told that I was over reacting. I would have felt like a fool, which wouldn’t have been the first time, but then I could have moved on being happy.
During our appointment we received an extensive 3D/4D sonogram. It took about a half hour or so, and when the sonographer was finished the doctor came in almost immediately. The doctor began scanning my stomach to show us the areas of her concern with Vada. The first thing was what we had originally come down to Peoria for, Vada’s stomach. The second area, something we weren’t expecting was Vada’s heart. The doctors do have an idea of what both abnormalities are, but until we are for sure, or until Vada has been diagnosed, I am not going to mention any terms that were given to us, yet.
Vada’s stomach looks like the opening to where her stomach would start to digest and then pass along food is too narrow. (Honestly, I am not 100% for sure that I am explaining this part correctly, but I think it’s fairly close) As we were watching the sonogram the doctor stopped to let us see that Vada was actually pushing, we could see her little body tense and un-tense, she was trying to get things to pass, but it wasn’t working. Now, obviously she is getting food, because she is growing (1lb-1oz. now), and she is “passing” fluids to some extent, she is just having a very difficult time. Then the Doctor scanned to her heart. This too is hard for me to put into words. Where part of her heart is supposed to meet another part, it isn’t. It kind of flapping. We were given a “suspected” term for this also. The doctor said that more than likely she will need surgery on both after being born, and that we would need to birth Vada in Peoria, verses our home town. We’re hoping that if surgery is needed, to do her stomach first and hold off on her heart for awhile to let her body get stronger. We will have a better idea as time passes, but we won’t know everything for sure until Vada is born.
The doctor also said that she would like to perform another test, an amniocentesis. I had originally declined this test b/c I didn’t feel it was necessary, and in many cases I still don’t think that it is. This test consists of taking amniotic fluid from the uterus. It is done by a sonogram guided needle, and it carries a risk (from what I have read) of 1 out 125 pregnancies that will rupture and cause a miscarriage. For our situation, when the doctor said she wanted to do it, we understood why. So, we had the test, and shortly after were released to go home. About 15 minutes outside of Peoria, we thought that I was leaking fluid, so we called back to the diagnostic center and was told to go to the E.R. We were admitted and in the beginning I was monitored, because I had started to have contractions. (The contractions btw, are considered somewhat “normal” after having an amniocentesis done.) We checked ourselves out of the hospital and came home around 9pm. We’re pretty for sure that it was not my fluid, since there has been nothing since. My contractions stopped for the most part during the night, and I only experienced two more yesterday.
So, now we wait. We will get the results back on the amino test within the next 3 weeks. However, this test is not 100%, there have been many cases where couples are told one thing and it turns out to be just fine. What we do know is Vada is alive, and she seems so strong to Justin and I. We know she is growing every day, and that regardless of what may or may not be happening, she is still our gift from God, and we will love her no matter what may happen. We know that there is an abnormality in her heart and in her stomach. That’s it, everything else is just speculation. Justin and I will be going back to Peoria this coming Tuesday. We will have our first meeting with the doctor who will be our Pediatric Cardiologist. We may know more then. I will continue my care with our Mid Wife Rita, as well as meet with the Peoria doctors monthly. I have re started my hormone injections because we need to keep Vada “in” as long as my body can hold her. With my past of pre term labor this is the best idea. The stronger she is the better. I’ve been off of the injections for around 3 weeks, and I have noticed some difference in myself. I am defiantly more sensitive, cranky & just blah on the injections, so my here’s my pre-apologies. :)
With all of this being said, whatever happens is not in our hands, we have no choice in this matter, and that is how we look at it. God is in control here, this is all his will, and this is our child, we love her no matter what. Please keep us in your prayers, praying really does make a difference. We know that God is listening. We understand that there is a reason for what is happening, we may not understand why, but we are not angry, we are however scared, and it hurts just as it would for anyone.
We will continue to keep you updated on what is happening & what we are finding out with Vada. Like I said already, the majority of what we find out will be after her birth. Thank you again to all of our friends, and family.

Thursday, November 5, 2009

Our Vada

So, this pregnancy has had its ups and downs from the very beginning. Needless to say, everything has turned out, so far, to be just fine. However, our newest concern was brought to our attition Last week during our 20 week routine sonogram. Vada's little belly is distended & during our 1st u/s her bladder was pretty empty. So our mid wife wanted to check again to see if any changes had occured. So we had a 2nd u/s ( I am using 1st & 2nd very loosely, we have had more u/s & honestly I lost count of what number these would be technically be) which was this past Tuesday. Vada's belly was still distended, so this is being considered an abnormality b/c we (including the midwife) are not for sure why her belly is like this. Its not overly huge, its just not the size it should be.
The one thing we know is it seems like this is the only abnormality were looking at, which is great. It rules out a lot of possibilities, at least this is our understanding of the situation so far. The next step is to go to St. Francis in Peoria. Rita said that they have an u/s machine that could tell if Vada had a hang nail. I never knew that was possible, but if she says it I believe it. Justin & I are hoping the answers we are looking for will come from what happens during this trip to Peoria. However, it may be one of those things that we'll have to wait until Vada's is born to find out.Whatever the case, I feel a little more confident that things are going to be okay.
Yesterday and today was horrible. The waiting and the not know was such a horrible feeling. Its hard to not let your thoughts travel to the worst side of things. However, I feel that I have been blessed with a wonderful husband and family, wonderful friends, and a wonderful mid-wife who is on top of things & is caring! Thank you to everyone for your prayers & your time that you have given to help out. Thank you for your love, support & for your advice! Please continue to pray, I truly believe that your prayers do wonders!