Best case scenarios

Mae is going to be born in May. When we named her we thought she was going to be born in June. I was thinking if we scheduled an induction it would be for June 1, but it looks like she's coming either May 29th or 30th! We need to wait until she is 39 weeks, but they don't want to wait any later than 39 weeks because of her risk of still birth. Since the children's hospital doesn't do a ton of births, they don't like to schedule inductions too close together, which is why we are not sure yet if it will be the 29th or 30th.

We had another echo yesterday. She still has double inlet left ventricle with dextrocardia, but from what they can tell she is best case scenario for that diagnosis. They had been concerned about the growth of her pulmonary artery and branches, but they are looking good. All of her valves look good. We will have one more echo before she is born but they wont know what kind of first surgery she will need until she is a couple days old. We met with two cardiologist and a surgeon. They all gave really helpful information and their best guess as to what is to come. But there is no planning with this kind of diagnosis. It will be one day at a time, seeing how she does, until she shows us what she needs. There is a chance she will need either a shunt or a restriction band put on her heart in her first couple weeks, but we wont know until we know. If everything is best case scenario and she does really well we might be able to bring her home about a week after birth and wait a few months until she will need the Glenn surgery. She will need the Glenn surgery sometime between 2-6 months of age. The longer we can put off any surgeries, the easier it will be. Once she recovers from her Glenn surgery she should be fine until she will need the Fontan surgery during her second year. After the Fontan surgery is it a life time of follow ups, palliative care and praying that she does well. There are so many "ifs" and things that could go wrong at any point in her life, I need to remind myself that we will just be blessed to have her life at all.

We are very glad that we are here, at this hospital. They have a group of doctors who have taken a special interest in single ventricle diagnosis and have started two clinics specifically for kids with single ventricle diagnosis, such as double inlet left ventricle. They told us that there are a couple kids in the program already with very similar hearts to Maelyn's, and they are doing very well. It is good to hear about all of the experience the doctors have already had with this diagnosis and all of the research they are doing. It is a very scary diagnosis. There is not a whole lot of information about quality of life or lifespan. But hopefully there will be much more information and medical advances by the time Maelyn reaches different milestones, thanks to these clinics. We just need to keep praying and being optimistic.

One thing we discussed is how living at higher altitudes can have an adverse affect on children with this heart. Of course, I am like, great, we will move back east! Some people do fine and don't seem to notice the altitude, but others struggle and do much better at sea level. So they said if she doesn't seem to be doing well at some point they might send us to sea level for a while to see if she does better. We discussed other hospitals on the east coast that are also investing in the single ventricle diagnosis and they said when we are ready to move they would gladly get us connected with those programs. That was great for me to hear, even though we know we will be staying in Denver for a few years.

I am still terrified for her first 6 months of life, but I trust that we are in good hands at this hospital and that God has a plan for Maelyn. Pray for an easy induction and best case scenarios for her heart and surgeries. Continue to pray for healing and preparing us and the boys for what's to come.

We move in less than 3 weeks. We have a lot of packing to do and I am exhausted. Pray we get it all done and that the actual move goes fast and smoothly.

Understanding DILV

Now that we have found a house, and there is slightly less stress in that department right now, I've realized how much house hunting was just an unwelcome distraction from everything with Maelyn. Now that we know where we will be living, I am back to trying to figuring out how we will be living. For one, just how to live with three kids, three and under. No less how to live with double inlet left ventricle, the hospital stays, the doctors appointments, the open heart surgeries, the catheter heart surgeries, the "Fontan Heart", and not to mention Glycogen Storage Disease. 

I've been attempting to read the book Heart Warriors, by Amanda Adams. It is her story of walking through her son's congenital heart defect. It's been really hard to read. I end up reading a chapter to a few pages and not being able to keep reading through my own tears, knowing that we are going to go through similar surgeries. I've also been researching more blogs of families who have been through this to try and prepare. I know every case is different, and I don't know what is going to happen, but I need to prepare myself because it is going to be a long hard road. I found one blog this week that I was relating to and was excited to read about how their son is doing, but they stopped blogging after his first surgery. But I really want to share one of their posts with you because the father does a great job explaining what DILV is, and how hard it is to explain. I hope their post helps you understand what we are facing. 

The Dunlap Family Journey: Understanding DILV

Thank you for praying for us as we have been walking through a lot these last few weeks. Thank you for all of the cards and messages we have gotten. Continue to pray that things calm down and things with the new house keep going smoothly. Pray my car is finally fixed and stops giving us problems. Pray for upcoming appointments, that Maelyn continues to look healthy and that her heart would miraculously heal. Praise God, Tim's company had lay offs this week and he is still there. Pray that his job only gets better with the coming changes to his position. Praise God my parents are here for a few days to celebrate Ben's birthday!

I want to share some verses that have been standing out to me this week. 

This verse was huge for me when we moved here and I was struggling with being in CO and it has been appearing a lot lately. Isaiah 43:19, For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland. 

And Psalm 25.