It' a girl!

We've be feeling your prayers and sensing a huge peace from the Lord. I spent Monday feeling a peace that no matter the outcome, my God is the same before during and after. He will never change and He will always be good. It wasn't until I started to pack up and take the kids to my friends house to head to my appointment at the Children's Hospital that I started to get nervous. Wednesday we got the worst news possible and felt we had zero hope of bringing our daughter home. Since then, each day seemed to hold slightly better news, so by Monday I was at an impasse. We had been in a place where things could really only get better, now things could totally get better or they could go back to being worse again. But we showed up to our appointment optimistic and full of faith. 

The sonographer was amazing. She spent an hour just thoroughly checking Maelyn's heart. She had an OB observing, so they were chatting about what they were seeing, and when that would make most parents nervous, we found it reassuring hearing her talking about what she was seeing. The other sonographers we'd seen didn't know what they were looking at and couldn't seem to find all the parts, but this one, she knew exactly what she was looking at. She was sure of herself, she double checked things, she had seen this before, she had seen that before, and the biggest kicker was, she found the missing right ventricle!!! I knew God could make four out of three! That doesn't mean that the missing fourth chamber works, but it changes the diagnosis. And to me it means that my God can continue to grow that right ventricle. 

So they left and gave the findings to the doctor. Then the doctor and the observing OB came in and did their own quick check on her heart. One thing that made this appointment even better was the way they talked about Maelyn. She wasn't just a fetus. The doctors knew she was a baby girl with life and personality. Once the doctor felt that she had seen enough and was confident in her diagnosis we moved to a small conference room to meet with the doctor, OB and nurse. We started out our meeting with Tim and I briefly explaining our journey over the last week and how we started out with the worst news possible and have slowly been finding more hope. So my first question was, what chance are you giving her to make it. The doctor looked at me right in the eyes and said that she has no reason to believe that Maelyn will not be able to survive the whole pregnancy and birth. I was so relieved I almost didn't believe it. It was like a weight was lifted and I could finally grasp the idea of having my baby girl again. I don't have to worry every second about her being alive. Her heart is strong enough to survive pregnancy and a normal labor and delivery. In fact her heart is strong enough that we will even be able to hold her and nurse her after birth. I had not thought that was going to be possible, if we even got that far. In fact, the doctor said that there is a chance that we might be able to take our baby girl home just a couple days after birth, like a normal baby. 

So the bad news. Maelyn's heart defect is call Double Inlet Left Ventricle with Dextrocardia. The dexrtocardia part means that her heart is twisted of to the right side of her chest. The doctor said that this does not matter to them. She can live with her heart out of place and the surgeons should not have a problem with it either.  Tim and I were talking and thought that on this ultrasound her heart looked more centered in her chest than it had previously. Even though we are not Doctors and not sure what we saw, I believe God is slowly moving it back over to her left side. You should probably just look up what double inlet left ventricle is and looks like but I will do my brief, non scientific explanation of her heart. With her double inlet left ventricle (DILV), she has a very very small non functioning right ventricle that is just open to the left and the large left ventricle is doing all the work, circulating all of the blood out of her heart. We were told that it is very good that she has a functioning left ventricle. Left ventricles are stronger and meant to pump more blood than the right anyway. All of her valves and arteries look good and strong. This is why she is okay right now and will make it through birth and at least a few days with out any intervention. Her pulmonary artery may have some blockage, they are not 100% sure yet, but that is a good thing. The first surgery would be to block some of that arteries blood flow, so if she already has that blockage, she would not need to first surgery. 

Once she comes home, the hospital has a program and clinic already set up for patients with DILV! We will be set up with a doctor and a nurse for weekly follow ups. We will be given a scale to check her growth and an oxygen monitor to check her levels twice a day. This way we will stay ahead of any problems and have a plan set up if a problem arises. She will need two more surgeries which will redirect her blood flow to the lungs. They will be around 3 months and 2 years of age.  The surgeries are going to be hard and there will be a big risks involved, but honestly, this is all way better news than we were expecting to hear. I can do this. As she grows and gets bigger and her lung pressure changes there will be more risk but she will be closely monitored her whole life by a cardiac team. There will be a risk that the surgeries fix will stop working and she will need a heart transplant, which comes with its own risks. But we will cross that bridge when we get there. Her every moment, every day is going to be a blessing. We are going to bring our baby girl home. 

This is all assuming her heart is the only problem. So far it sounds like it is. We have follow up appointments with all of these doctors in a few weeks to check her growth and her heart and my pregnancy to make sure everything is going well. We will have a lot more ultrasounds in the next 18-19 weeks and she will be closely monitored, well forever. I will be switching my OB to the University Hospital and then I will deliver her right at the Children's Hospital with their OB's and cardiac team. I am pretty sure we are going to opt for a scheduled induction. As much as we know there is a long road a head and it is going to be tough, we are so relieved and so happy that we are going to get to hold our little girl. 

Even though we got good news, please keep praying. Maelyn still needs a lot of healing. Ben told me last night that God is going to fix her broken heart, not the doctors. I believe that can happen too! I believe God can twist her heart back into place in her chest, I believe God can grow that right ventricle, I believe God can make her a miracle baby that will blow her doctors minds! Keep praying with us for all of these things.