Hi everyone. Sorry to have left you all hanging for a few days. We’ve had probably the busiest and worst week. I can’t believe it’s only been a week.
The good news, at this very moment, there is still some good hope for baby Cohen!
Today(Thursday), I am 23 weeks and 2 days pregnant.
We have had two appointments since my last post. On Tuesday morning, we met with our OB. He did not get a good vibe from the cardiologist we met with last week. He told us, at this point in time, he did not feel much optimism and really wanted us to be prepared for what could be reality. He is an upfront and straight forward kind of guy, and we knew that ahead of time. He said things would be a lot more hopeful if it were one or two defects that would be much easier to repair. Right then, there were what we believed was 4 defects and they are as bad as they can be. Some babies have these defects but perhaps not to the extent the cardiologist believes Cohen’s are. The majority of the heart is not good. Therefore, it being fixable is going to much harder, if even possible. Our OB did agree with us going for second opinions and trying to find out what was out there as far as solutions.
When we left the OB’s office Tuesday, we did not feel good. We felt quite hopeless just as we had leaving the first cardiologist office last Thursday. Luckily, I was able to get into a cardiologist at Children’s Medical Center in Dallas the very next day(Wednesday). Hubs, his mom and myself drove to Dallas and met with the Cardiologist.
I had an ECHO done right away once we arrived. It lasted probably about 30 or 45 minutes. Cohen is kind of a ninja! He was moving, kicking and doing flips. He would be shy too and try to cover himself up when they were looking at certain places. It was nice to see him and his activeness. A cardiologist in training did the first half of the ECHO and then the cardiologist we were meeting with came in for the second part and did the ECHO with her. We met with them right after to go over their findings.
Overall, they (the two docs at Children’s Medical ) agree with what Cardi 1 (who we met with last week) found defect wise. However, they were able to go in so much more detail and they really didn’t focus on all the problems so much. They went right into talking about the solutions. They specialize in these solutions and believe in themselves. The newest and possibly worst concern is the pulmonary veins. The blood flow pattern seen on the ECHO leaves the docs to believe there are some location issues with the pulmonary veins. This is not a good thing because with the veins in the wrong places, they can not function properly and therefore create a muscular type condition in which the veins tend to contract and cause blockages. This is specific prayer. There is a surgery they can do for these veins to put and connect them where they need to be, but this must be determined post arrival.
However, the vein situation is not a common thing, so they’ve only seen two babies with this at Children’s Medical. One did not make it after surgery and one is doing good at this point (no details on age or anything). The cardiologist could not see the veins good enough yesterday to make a complete decision about their whereabouts or function, but she did say she was worried. She said at my 28 week appointment, she will see if she can see them any better but she doesn’t really feel as though she will. She will check the ECHO on this blood flow situation to see if the veins are still indicating something isn’t right. They MUST be there to be repaired and in which that case that we probably won’t know till birth as well.
As far making repairs on the heart, they have a series of 3 open-heart surgeries they are going to aim to do. To start out with, there is a “short cut” in the heart that allows oxygenated blood to get pumped back into the body while Cohen is inside me. This shortcut is called the PDA. It is open in womb because his lungs haven’t developed. A few days after birth, it typically closes. They will give him an IV in his belly button of a particular medication to help keep it open. The side effect of this medication is the baby forgets to breath and they have to put them on a ventilator. I believe this happens quite a bit. We will pray it does not.
The first surgery will be done probably in the first 3-4 days of life. This is called a BT Shunt. The purpose of the this shunt is to get the blood flowing where it should and to allow the lungs to develop a certain pressure if they can. The second surgery will occur 4-6 months. This is known as the Bidirectional Glenn Shunt. I believe this shunt re-routes the blood flow from the pulmonary arteries directly to the lungs. During the second surgery, they will remove the BT Shunt from the PDA and allow that close naturally. The third surgery will probably occur close to 2 years old and is called the Fontan. This surgery will help the 1 ventricle to pump blood out to the body while blood returning from the body passively flows into the lungs (with help from a little suction from the single ventricleUltrasound, normal fetus – ventricles of brain
Ultrasound, normal fetus- ventricles of brain).
Instead of 2 pumping chambers with a left and right atrium and ventricle, he will have a single pumping chamber with a top atrium and bottom ventricle.
They did speak more about the transplant but they want to keep that “in their back pocket” as a last option.
Because of the heart condition, Cohen has Heterotaxy Syndrome. This basically means his stomach is on the left side and it should be on the right. That will be another surgery to try to move it to where they are supposed to be in the abdominal cavity. We will have to keep a very close eye on him to make sure nothing inside begins to twist. They will not be able to do this surgery until he is pretty stable. When they do this surgery, the will also remove his appendix. They do that because if he ever were to need it out, doctors might get confused with things not being exactly where they expect. There are also complications with this because he could have a spleen issue which will lead to him needing to be on antibiotics for a few years. His risks of viral infections are much higher.
At 28 weeks, the cardiologist wants to see me back for an ECHO and to meet with the surgeron. I will also meet with the high risk OB I will start seeing in Dallas. The appointment is tentatively schedule for the 31st of March. I will actually be 29 weeks at that point. We didn’t do the tour yesterday so we will do that then and speak with many other people. I will tell you, we were SO very pleased with the people we met with at Children’s Medical Center. They were SO nice and helpful! They were amazing to have gotten me in so quickly. As soon as we arrived, the lady I spoke with on the phone greeted us and took us right back for the ECHO. I have the direct phone number for the two ladies I will be in constant contact with and they will be setting up all the appointments and everything when needed. Much less stress with their help!
The doctor wants me to start living in Dallas a month before I have Cohen. I will still have c-section but it has not been scheduled just yet. As I probably said in the last post, the longer he is in me, the better. I will be in Dallas a month before in case I go into early labor.
Every doctor hubby and I have met with has informed us they are certain that with the degree of Cohen’s heart condition, it would not be compatible with life IF he has any chromosomal genetic defect. With that being said, we have decided to get an amniocentesis. We did contemplate this for many reasons but overall, our doctors and our hearts tell us it would be best for multiple reasons. We feel it will answer many of our questions. Every doctor tells us in their first sentence, “this is nothing either of you did”…”this is not your fault”… and we do believe them. In doing the amnio, maybe we can find peace with maybe what caused this. We also know that our chances for another baby with a CHD (congenital heart defect) has increased by 5% and the amino can tell us more on that as well.
No, I would not normally have an amnio but at this point doctors are thinking it is best in our situation and will help us all in many ways. I know there are risks, but no matter what, God is has a plan and that I just have to trust. We know God has a plan for Baby Cohen and we are just trying to follow what we are lead to do.
If Cohen does not have a clean amino, I will carry him as long as I normally would but I would have him here and not in Dallas. He will live with God blessed him with and between now and then, we will try to start working on peace with that. No matter what happens, he is our son and we will enjoy the seconds, minutes, days or years we are blessed to have him..in and out of the womb.
After leaving Dallas yesterday, we briefly thought we would continue looking for other opinions. We may still, but right now we feel comfortable with what Children’s has to offer and the doctors attitudes. We may see about some other doctors around the country looking at the ECHO, we may not.
I won’t lie to you, I KNOW that I sound a lot stronger in writing than I probably do if you were to talk to me in person or on the phone but I’m working on it. I look like I got run over by a train and I am indeed struggling with my emotions and questions I want answered. I know most questions can’t feasibly answered right now. I am a mess BUT I know I have to keep it together for myself and hubby..and most importantly Cohen. I just take lots of deep breaths and try to stay busy. Some moments I feel a lot of peace come over me and the next minute I will lose it. I think hubby is the same way. I’ve been praying for God to show us his plan. I highly believe he is working through the doctors. Well, last night I had two dreams and I was in labor in both. In one, I birthed Cohen and in one I did not. I don’t know what either of those mean. No matter what, I will still be giving birth to him. God just isn’t revealing anything just yet. I just thought they were very interesting dreams. I don’t remember much detail as I immediately woke up after each …at the same part.
Waiting, of course, is the hardest part and that probably won’t stop for quite some time.
Hubby and I are getting lots of support in many ways. We have AMAZING family and friends. People are being SO kind and helpful to us! I seriously don’t know what we would do without our support system. And the internet/blogging community, oh my goodness! You guys have also been wonderful, too. All the prayer requests being spread, emails, comments and gifts are SO thoughtful of you all. I know I’m so behind on emails. I will work on them in the close future. Just know, I appreciate them all!
As I type this, Cohen has been kicking me non-stop! Just wanted you to know. I think he is thinking about you all, too.
I am going to try to get back to blogging regularly. I just only have one thing in mind and one thing going on! Maybe I’ll just start cooking a bunch and posting recipes on sugar and spice? 🙂
I’m getting to see some of my best friends, that I don’t see too often, very soon and that excites me. One of my besties who lives in Dallas came to see Hubby and I at dinner before we left town last night so that was nice.
I have turned the option off to comment anonymously. I should have done it a while back but simply forgot. If you want to remain anonymous to the blog community but yet want to leave me a comment, please just email me. Do not get me wrong, in the last post, I had some WONDERFUL and helpful comments that were left as anonymous but then the commenter would leave their name and email. That was great. do believe you can enter your name and not have a Google account or anything. I won’t acknowledge any negative comments but I do look forward to the uplifting ones as this is the situation we are in.
HERE is the first post on Cohen’s heart. It is also the previous before this one so you can click “older posts”.
Love to you all!