Hi everyone. So, I’ve been avoiding blogger for a few days now. Not really. I’ve just not gotten on the computer in the past few days. I’ve had my iphone and that’s about it. There is no way around this post so I’ve finally made myself sit down and do it.
Thanks to you all for your thoughts and prayers. We will need the prayers more than ever from here on out.
As I told you all, last Thursday, our regular doctor referred us to a Pediatric Cardiologist. We had the cardiologist appointment this past Thursday morning. It was pretty bad. It took about 3 hours and we walked out devastated.
There are 4 defects the cardiologist believes she found.
1.Atrio Ventricular Canal Type Defect
2.Ventricular Septal Defect
3.Transposed Great Vessels
4.Hypoplastic Pulmonary Artery
These are the two pics the cardiologist reviewed with us.
I will tell you I’m not good with the human anatomy and overall, I was just sick. So, as far as explaining it ALL, I can’t be the person to do that. I lost it as soon as she had the look and said the fist sentence. I was in and out but tried my best to listen to what she said. Brent picked up more as he knows more about the heart.
When she sat down, she immediately said there was nothing Brent or I had done to cause this. It happened on it’s own and there not sure where or when it happened just yet. She said more than likely it was between weeks 7-12. She asked us if I had an amniocentesis done because heart related issues are often related to genetic disorders. We did not have an amnio done but I did have a blood screening done and everything on it looked good.
Many of these defects are common. She (being cardiologist 1) said if we looked them up for research, we would definitely understand and learn more about them. However, she told us that all four of them together, are not common. She said the thing is, nothing or no one, besides a doctor, can explain to us how they are working together and/or against each other.
She (cardiologist 1) does not believe there is anything we can do right now to help any of the defects. She said we must wait until he arrives to see what is going on. She said it may require surgery immediately or it may be a few weeks. If he has to be stabilized then they would do that and get him to where he needs to be to have surgery. It will involve open heart surgery and just a series of other surgeries. We are unsure about a transplant because the cardiologist says it opens a whole different can of worms. He could reject the heart. The life is only 10-15 years on them. They don’t do many neonatal transplants as they aren’t able to save many of the hearts because some causes of infant deaths are so unknown. We are going to try to fix the heart he has first.
We were told so much it’s hard to process. And of course we are sick about it. We’ve immediately began to pray specifically and take it one minute at a time.
I tried to ask all my “why” and “how” and “maybe” questions. I asked if he maybe was just underdeveloped in the heart and still had some developing to do. She didn’t act like that was the case. She acted like what it was, it what it is going to be. His heart is currently the size of a quarter, which is portioned correctly with where he is gestational wise.
She said she didn’t think things would get better at this point but could get worse. There could be other issues/defects because of this. And the quality of life isn’t known yet. Instead of saying “she” I’m going to abbreviate and make her “Cardi 1”..sorry if that’s unprofessional, I certainly do not mean it to be. I’ll explain more below. Anyways, Cardi 1 said it gets harder to see the heart the further along I get. She said my regular doctor would monitor me and be able to detect any major changes. Well, I asked her why I wouldn’t just have an ECHO done every week. She said she would work with my doctor in coming up with a plan.
If things get worse, they will have to take him early. This would not be good because he needs to be at a certain stage (in many ways) to have the surgeries. The longer he is in me, the better because I am, essentially, his best lifeline.
Cardi 1 seemed very impressed Brent and I had no known issues, though I now know it can just be a random thing. She also liked the fact how active Cohen is and how right-on track he is physically. She asked me about my pregnancy thus far and when I told her everything had been good she simply said “hmmm”. Cohen was moving around a ton in the ECHO. He was moving around so much that they had to take a break to see if he would be still. Sure enough, when they tech stopped pushing on my belly. He would be calm. The tech did say his head was DIRECTLY on top of my bladder. I certainly could have told her that!!! I feel the need to tinkle non-stop. So, these things to me are good. He is doing his best and we want to do ours.
We go to our normal doctor Tuesday morning at 8:20. At that time, he will go over with us more of a plan and what he wants me to do to help keep this pregnancy stable and at it’s best. Cardi 1 could not really tell me those things as pregnancy isn’t her specialty. She works on hearts of unborn babies, babies & kiddos.
I say “Cardi 1” because there will probably be many Cardiologist in which we visit with. Thus far, we are looking at San Francisco, Boston & Dallas for more evaluations. Cohen’s grandparents will be sending us wherever we need to go. They asked us to let them handle finding the best and figure that part out. I’m certain our doctor will help us with this as well. They figure that will just be more stress if Brent and I are trying to figure it out all alone. Of course, we are TOTALLY open to hearing any stories and opinions from anyone as far as situations and doctors. Some of the evaluations can be done by sending the ECHO video/pictures to doctors at those places that we have found. If they can take the case, we will go meet with them. Whoever we feel most comfortable with is hopefully who can fix our son’s heart. I will have Cohen wherever the doctor is.
We will of course, be working with our doctor here as we are truly thankful for him. Cardi 1 told us first off how lucky we were our OB even picked up on this and sent us to a cardiologist. She said had we not known anything, when Cohen arrived it would probably have been a 48 hour scramble trying to save him….. with no sleep, trying to figure out things and find someone to fix it. With that being said, I thank God but I also wonder about my strength for the next 4-5 months. I’m just scared.
We are very curious to hear what Cardi 1 told our doctor after meeting with us. Cardi 1 seems like a fantastic doctor but overall, it was hard to get a feeling from her. We didn’t FEEL her confidence that she should be the one to take our case. She does seem like a very smart lady. She said she is 100% for second opinions and evaluations. She even began to tell us doctor’s names. If she doesn’t feel all 4 of these defects are common together then perhaps she hasn’t worked on all 4 defects on the same baby. Ideally, we would like to find someone who has.
Word around town (and many other places) has spread quickly. We’ve gotten calls, emails, texts & care packages. We are so appreciative God is surrounding us with great people. We are trying not to lock ourselves inside and snuggle in bed like we probably could for at least few more days. We did for about 15 about 20 hours just to process everything and have time together. We won’t give up and we know God has a plan and that’s the way it is going to be. We are tying to be optimistic and strong for one another. It doesn’t take much for us both to have a very terrible moment. We are praying that gets better every day. I think once we have a plan, we will feel more at ease. We won’t know the outcome but all we can do is give it our best. It’s just a LOT to think about and handle and it’s just scary. We want to go on with this pregnancy as we were before. We don’t know what will happen but giving up little pieces of life we were living and planning, just feels like we would giving up on pieces of Cohen.
I’ve also emailed quite a few of you who had contacted me to check in or asked me to follow up. Thanks so much to everyone that comments, contacts me and just plain reads this blog!
I’ve also had people give me contact information for people they know that have had a little one with heart issues. I’ll hope to be speaking to some people soon who may have been in similar situations. Last night at midnight, my sister in law emailed me a link to a little girls Caring Bridge page. She lives in the same town we do! In Feb 0f 2008 the mom was about where I am gestationally and her baby was diagnosed with SIX heart defects and 3 of them are 3 of the same ones Cardi 1 believes Cohen has! The baby girl was born in June of 2008 in Dallas and that’s where she had her doctors and surgeries. They spent weeks at a time there. She found out early like we did and found the right doctors and got everything set up prior to and everyone was all ready to go when the baby girl arrived. I spend a few hours reading the journal the mom wrote as everything was happening. It gave me a lot of hope and I was just amazed with the mom’s strength . I have strength but I’m certainly having to find more. Anyways, I think the little girls first surgery was about 10 days after birth and the next one was a few months later. The little girl has done amazingly and doctor’s have certainly called her a miracle. While reading the journal, I found out the cardiologist that she uses here is the same lady we went to Thursday. So, Cardi 1 does the little girl’s monitoring. She did it every 2 weeks for a while and I believe she is only having to go in monthly for her checks. I’m not sure when the next surgery will be. I’m hoping Brent and I can meet with her parents soon. I’m not sure if the mom meant the Caring Bridge site to be friends and family but I would like to ask her if I can post it.
We certainly pray that the next cardiologist doesn’t find ALL four defects or perhaps seems a bit more confident about them. We have no idea. It will kind of be a waiting game until we start seeing more doctors.
I will certainly ask for everyone’s prayers and thank God for everyone, everyday. It feels like a bad dream but God won’t put us to it if he won’t pull us through it, right?
I will keep you all updated and I promise to try to keep this blog up and going. I can’t tell you how I’ll be feeling from day to day but that’s life.
love to you all!
May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit ~ Romans 15:13