3rd Echo

On Tuesday, October 28, we had our 3^rd fetal echocardiogram with Dr. Van Gundy. When he was done with the echo, he looked up the z-score for Caden’s aortic valve. He came back and told us some good news. First, he said the VSD (the hole in the septum in the heart) was closing which meant that more of the blood was being forced in the correct direction which meant the aortic valve was growing. The z-score went from a -4 to a -2!!! We were very excited about that. And, if the VSD closes completely, it means that the aortic valve will probably continue to grow.

However, after telling us that news, he also told us that the mitral valve was too narrow and it’s z-score was -3.7. Neither Greg or I remember anything about the mitral valve being wrong. Our guess is that they didn’t mention it to us because everything else looked so dismal, it was of minor concern. We’re not entirely sure. But, Dr. Van Gundy is very optimistic that things can continue to change and improve throughout the rest of the pregnancy.

We went into the appointment with a list of questions for Dr. Van Gundy specifically regarding location of delivery. We had received various information from different people and wanted to talk to him about the options to see what was really realistic or not. We asked him if there was a possibility of us being able to deliver at Sutter Memorial which is downtown Sacramento. He ruled that out immediately indicating they don’t have a pediatric cardiothoracic surgeon so it was just not an option at all. Next we talked to him about UC Davis Medical Center which is also in Sacramento. He has a lot of personal experience with UC Davis and his feeling was that they were simply too conservative to deal with Caden’s hypoplastic left heart problem and the diaphragmatic hernia at the same time. Then we talked to him about Loma Linda University Medical Center. He said their bent is toward transplant, not repair and that creates its own set of problems such as not getting a heart in time, anti-rejection drugs, increased risk of tumors, another transplant within 8-10 years, to name a few.

So, hands down he felt Stanford was our very best option. He really felt they were best equipped to deal with the heart defects and the diaphragmatic hernia. However, that being said, we talked to him about his feeling of the odds of viability even after surgery. He said as things are today, he is an optimist and would put the odds at around 50% survival rate. Of course, if things with the heart continue to improve, the odds of survival would probably improve as well. And, several people have asked us why we haven’t talked about in-utero surgery. It is just not an option for the situation we are in. Dr. Van Gundy said there is no possibility of that at all.

Anyway, we left the appointment feeling very positive about the improvements in the heart conditions that we knew about (VSD & aortic valve). But we also left with some new concerns such as the mitral valve and one of the arches. We continue to seek the Lord in prayer and try to go in the direction he leads us. We felt that several doors closed this week which makes some of our decision easier. But, of course there are still several more weeks to go and we want to continue to pray for guidance and direction.

OB Appointment

On Friday, October 17, we saw Dr. Sweeney for our regular OB appointment: I am 27 weeks now. We had a list of questions to talk to her about especially since seeing the perinatologist on Tuesday. One of the first things Dr. Sweeney told us is that she thought we should absolutely deliver Caden in a hospital with a great pediatric surgery team. She believes, after reviewing all the ultrasound reports, amnio results and talking with Dr. Van Gundy (the cardiologist), that Caden actually has a chance! In the beginning, she felt the opposite, so things are looking up!

We ended up spending most of the rest of the appointment talking logistics. She wants us to get a 2nd opinion on the diaphragmatic hernia since Tuesday's ultrasound wasn't as clear as they would have hoped. So, she is working on setting up an ultrasound with a different perinatologist group just to get another opinion about the diaphragm. I think it's a great idea and am happy to get as much clarity as possible at this point. So, we will wait to hear back from her about that.

In the meantime, she also said she would talk to some other doctors to find out where the best place for me to deliver would be. She was considering UC San Francisco, Stanford, or UC Davis Medical Center. She thought if all things were equal, we should deliver at UC Davis simply because of it's location being in Sacramento. This would be easier logistically with me going into labor, also taking into account the fact that we already have a toddler and can't ignore him. But, she said she would get back to us on what she found out.

In addition to delivery location, we talked about the need for Caden to remain inside of me as long as possible to give him the best chance of survival. That being said, she recommends bed rest starting at 35 weeks. This of course will be a challenge when I have Kyler to take care of. So, we might be in need of some assistance when the time comes. And, she said if it turned out UC San Francisco or Stanford would be the better option of place to deliver, she recommends me moving to that area at 36 weeks so I will be local in the area when I go into labor. My labor with Kyler was only about 7 hours and he was born at 38 weeks (2 weeks early). So taking both of those things into consideration, it would be a good idea for me to live somewhat near the hospital where I would deliver in order to make it in time.

Dr. Sweeney called me early that same afternoon to tell me she had talked to Dr. Van Gundy about his recommendation on where to deliver and he strongly advised Stanford. He feels their pediatric surgery team is more aggressive and that is what Caden needs. He said there was nothing necessarily wrong with the team at UC Davis, but he just felt they weren't as aggressive and that might mean more surgeries overall for Caden. But now we just need to do some research and find out what housing options we have near Stanford, if insurance will pay for any of that, etc.

Right now, Dr. Sweeney is setting up a consultation for us with a pediatric surgeon at Stanford so we can start making our final decisions. I am also working on getting an appointment for a consultation with a pediatric surgeon who is with UC Davis (I think) based on our referral from the perinatologist we saw on Tuesday. Hopefully once we have the information from the surgeons, we can submit our concerns to God in prayer. We want to seek his guidance on how to proceed. We really want to have as much information as possible, yet we also want to make sure we are proceeding in the direction of God's leading.

It's amazing to think we are in the position we are now based on where we started. In the beginning there was no hope, or so we were led to believe. And now, the doctors all seem to be in agreement that surgery is a great option and we should do it. God is so good to us and we are so grateful for his love and guidance in our lives.

Talking to Kyler about Caden

We weren’t sure how to talk to Kyler about Caden. In the beginning of the pregnancy, we decided not to talk to him about it simply because 9 months is a very long time for a 2-year-old. We figured he wouldn’t really understand what was taking so long for baby to get here. So we decided to wait to talk to him about it until I was further along and was showing more so that it was more “real” to Kyler.

When we had our very first ultrasound and received all the bad news, we really didn’t know how to talk about it with Kyler. He adores babies and loves to kiss them, hug them and try to hold them. We weren’t sure we wanted to get him all excited about having a baby brother when we weren’t sure Caden would even survive. But the more we thought about it we realized that regardless of whether Caden lives or not, he is still a member of our family and will be loved by us forever. We knew we needed to talk to Kyler about Caden and include him in our prayers for him. This is his brother and we want him to know about him and love him. We want to honor Caden as part of our family.

So, while we were on vacation and came up with Caden’s name, we really started talking to Kyler about him. Now he will come up to me and lift up my shirt, point at my belly and say “Mommy’s Caden”. We talk to him about his brother in Mommy’s tummy and we pray together and ask God to heal him. We are careful not to say Caden is “sick” and might die because we don’t want Kyler to think that if he gets a cold or Mommy or Daddy are sick for any reason that any of us are going to die. That could be very scary for him. So, we try to keep it very simple and very basic. It feels right and we know God is leading all of us so we try to keep focused on him. Thank you for your prayers to help us continue to know the right things to tell Kyler about his baby brother.

Another Ultrasound

Today (October 14), we had another ultrasound at the perinatologist’s office to see how things looked with Caden now. The ultrasound tech called us back and did a half-hour scan first of all. And, during the ultrasound, she switched over to 4D briefly and we got to really “see” Caden. She printed a couple pictures of his face; he had his left arm across his mouth and resting on his right cheek. So sweet!

After she was done with her part, the perinatologist came in to discuss the ultrasound. He informed us that the thickening of the skin that had been on the back of Caden’s neck was completely gone and it was “normal” now. When we asked him about the shape of the skull, he said it looked “normal” to him as well. Both of these were things they told us in the beginning indicated neurological problems. Of course, as we know, the amnio results showed no chromosomal problems but left us wondering if there were still neurological problems involved. With both of these indicators disappearing and now looking normal, we are so encouraged by the news!

He didn’t spend any time discussing the status of the heart with us because we see the cardiologist for that. Although during the ultrasound we could clearly see all four chambers of the heart, which again was something they said had been defective in the beginning. We know there are still problems with the heart, but not to the extent that was originally thought.

The last thing we talked about was the status of the diaphragmatic hernia. He told us he could see part of the diaphragm, but not all of it and it did appear that the hernia was still a problem. Caden didn’t seem to be in the best position today for them to get some of the views they would have liked. So, unfortunately we don’t have as much information about the hernia as we would have liked. But we will continue to monitor it with another ultrasound in six weeks.

As we were getting ready to leave, the perinatologist said he would set up a consultation with a pediatric surgeon. This way we can get some of our questions answered regarding what will happen at birth if we decide to intervene medically for Caden. We will be able to get a better idea of what to expect, where we should deliver, surgery timelines (in conjunction with heart surgeries as well), etc. I was so relieved to have him set this up for us because it will just help us get more information and at this point, that is all we can do.

When Greg and I left the appointment, we felt so encouraged by the positive news we had received. It seems like in the beginning we were told the worst of the worst and it didn’t seem like there was much hope at all. But, at every appointment we have had, regardless of which specialist it is with, the news keeps getting slightly better. Every week we are given more and more reason to have hope. There is more proof every day that God is with us, helping us through this situation. We are so blessed, regardless of the outcome!

2nd Echo

On Tuesday, September 30, we went to the cardiologist for our 2^nd fetal echocardiogram. Dr. Van Gundy told us during the echo that it looked like the aortic valve had grown which was great news! But, he wasn’t sure exactly where it should be until he looked it up. When he was done with the rest of the echo, he looked up the size that it should be and it turns out it still wasn’t good news. They use a statistical number called a “z score” to determine the severity of the valve opening. On Caden’s 1^st echo, his z score was -4.7. On this echo, the z score was -4. When they are looking at these numbers, they don’t want to see anything less than a -2. So, it is still not great news regarding the aortic valve. However, the VSD did appear to be getting smaller so that is good news.

The other thing Dr. Van Gundy talked to us about was viability of Caden if he was born premature. In his opinion, he would need to weigh at least 3 kg in order to have any chance of survival if we were choose to intervene. This would be close to what Kyler’s birth weight was being born at 38 weeks (only 2 weeks early). Dr. Van Gundy said if we chose to intervene, they would probably want me to go into labor naturally and not induce, and they would want to give me a round of steroid shots at 38 or 39 weeks. However, I don’t know if Caden would stay in until that time. It’s hard to say. But, knowing this information, at least from his opinion, helps us understand where we’re at even better.

Also, on Monday afternoon, September 29, I got a call from the genetic counselor with the results of the test on chromosome #22 for velocardiofacial syndrome. It came back normal so Caden doesn’t have that. This is another piece of good news regarding the possibility of something that could have been wrong and turned out to be fine.

It’s interesting because even though we didn’t receive great news regarding Caden’s heart, Greg & I both left there feeling positive. The news hadn’t gotten worse and had even gotten slightly (very slightly) better. And, we seem to have a sense of peace about the whole thing. It doesn’t necessarily make sense since things still don’t look good. But we know things are completely out of our control at this point and God is in charge. Regardless of the outcome, he will sustain us and get us through.