Joy

This weekend my very good friends threw me a baby shower to celebrate my baby girl. It was perfect! It was just a handful of my closest friends. There were cute little decorations, made my my friend. We ate delicious food and cake. The cake was amazing, again made by my friend! We all made headbands for Maelyn and they blessed me with gifts. We ended with them each praying for me and my family. The whole thing was a huge blessing. 

During the prayer time God really pressed on my heart the word JOY. Ever since our 20 week ultrasound I have had a very hard time feeling joy. Joy about anything, but really joy about my baby. Preparing to have a baby should be joyful, and I should be joyfully waiting her arrival. But all I have had is fear, anxiety, and worry. Anytime that I get a sense of joy, I shoot it down with the reality, all of the different realities that we are facing, and the reality that she could die. I haven't wanted to prepare for her to come home, because there is a chance she wont. I really have not let myself prepare for anything beyond her 6 month mark. So when people have handed me 12 month clothes, I just shove it aside, because I can't think that far. So at the shower, celebrating her and opening presents to prepare for her birth and home coming, I was forced to feel joy for her. It was wonderful. Then I got home and started unpacking presents and getting things ready to wash and put away for her, and all I could think is, what if she never gets to use this? What if she never comes home and I have all of this ready for her? But I can't let myself keep thinking that way, I need to let myself rejoice in the fact that I am having a baby girl. God wants me to feel that joy for her, because He created her to be my baby, my joy and pride. So I am going to try and feel joy, and wait excitedly for her arrival, and maybe that will make the fear and anxiety easier. I spent this afternoon getting her room ready, not just as a guest room (which it is) but as Maelyn's room, ready for her to come home one day. 

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.

Getting too friendly with the Children's Hospital

Yesterday we went for a follow up with the fetal cardiologist. Since we were already scheduled there, I had my blood drawn at the Children's Hospital for my glucose test and the genetic testing for Glycogen Storage Disease. It felt good to kill 3 birds with one stone. I did feel a little weird having my blood drawn in a room meant for little kids, with a little butterfly needle and little tubes, but the phlebotomist reasured me that they do it all the time. (But really, I like the butterfly needle and feel like a chicken when I ask for it at the normal doctors!) We always have a good experience at the outpatient lab at the Children's Hospital. Everyone is very friendly and great at what they do. 

The cardiologist did another echo cardiogram on Maelyn's heart. It didn't take quite as long this time because they now know what they are looking at and looking for. Once again, she was not in the most ideal position so they had a hard time seeing everything clearly. I love that when I am pregnant I can really feel the baby. I can tell where the hands and feet and butt are. I can feel every kick and punch and wiggle and hiccup. This makes the ultrasounds even more fun. I get to see what I am feeling. She kept moving and I told them that she was punching me with her little fists and sure enough we checked and saw her give me one swift punch. It was really cool to confirm what I imagined those movements were. After the ultrasound, for some reason, I got nervous that something was going to be wrong or we were going to get worse news. But the cardiolosist reported that nothing has really changed. She still appears to be in the best condition for what she has. All of her valves seem to be working well and all of her arteries are good size. They are still checking the blockage of the pulmonary artery. This is where we want some blockage but not too much. They will not be certain about it until she is born and they can do an echo on her chest. At that point they can say for sure if she will need that first surgery or not. We are really praying she does not need it. 

I always think these pictures are kind of creepy, but neat.
Her hand is under her chin, and she's using the placenta as a pillow.

After the appointment we took a quick tour of the labor and delivery unit and that cardiac intensive care unit, where she will go after birth. We started with the CICU since it is on the 3rd floor with the cardiac clinic. It it very nice and looks like they will do a great taking care of her, but it looks pretty uncomfortable for us. Every room is essentially a fish bowl so that they can see everything from the nurses desk. There isn't a bathroom for the parents and the "bed" is a foam couch. If she can move to the regular cardiac unit the rooms will be more comfortable for us, but if she needs surgery she will probably be in the CICU for about a month. We went up to the 4th floor where labor and delivery will take place. Tim and I were shocked when we walked into the massive labor and delivery room. It was pretty sweet! I guess they have to be big for the dozen or so doctors and nurses that will probably need to be there. But there is also a table and chairs, a more slightly comfortable looking couch-bed, a recliner and the huge beautiful bathroom. I think it was the nicest bathroom I've ever been in. I will get to stay in that room on the 4th floor and she will be moved to her CICU room on the 3rd floor about an hour after birth. I am free to go down to her room whenever I am ready but her room is going to be much harder to recover in. There is no bathroom and no bed, the two things you really need after pushing a baby out of you. I'm also not allowed to pump in her room, since the room is a giant window. They are not sure how much I will be able to nurse her. We are praying that she will do so well that nursing will not be hindered, but I was told to plan on mostly pumping. I know it is going to be very hard for me to not be with her 24/7. When the boys were born I feel like I hardly ever put them down, and we never let them out of our sight. They were held all day and sometimes over night those first few nights. It is going to be hard to not get to hold her and snuggle her and nurse her, no less leaving her alone in her room. Tim and I were talking about how to do that. I don't know how we are going to do that. We just have to remember that she is different, and for her it will be better to be taken care of by medical professionals, than by snuggles. They need to get her well before we can smother her with love. (I might bribe the nurses to snuggle her though.) 

Tour the Labor and Delivery unit.

I also can't imagine being away from the boys so much. I know they will be fine, they are really good and do well for other people. But I am going to be an emotional wreck (not to mention the hormones from child birth making everything more intense). After I had Micah and was at the hospital, I heard a little kid outside my room and just started crying because I missed Ben, and it had been less than a day. Yesterday was a crazy day, and I only saw them for an hour before dinner time and I was surprised how much I needed to snuggle them as soon as I walked in the door. It is easier with Ben, although he is a momma's boy and he missed me a lot, I gave him a big hug and we were fine. But Micah is still so little and he is also a big momma's boy who spends most of the day on me or next to me, it is hard to not be with him. When I am even gone for an hour and get back he comes right to me needing to be held and honestly I need to hold him too. Last night we spent some time just sitting together doing nothing because we didn't see each other all day. He's my real snuggler and I think we have a special bond since he was such a hard baby, and everything he's gone through. How am I going to balance them at home and her in the hospital for weeks at a time? I am very thankful that it is only a 30-40 minute drive, not a road trip or plane ride, I'll just have to figure it out.

I have so many pictures just like this one. This is our typical spot, snuggled up together.

I am very grateful for the Children's Hospital here. I really trust them and I feel like she will get the best care that she will need. The facilities are great and the hospital has a warm and friendly feel, not overly "hospitally". I like it, but at the same time, walking in yesterday for my appointments, I couldn't help but feel slightly resentful towards it. I know how well I am going to get to know it, I know how much time I am going to be spending there, I know it's going to become our second home and that just makes a pit in my stomach. I don't want to have a relationship with a Children's Hospital. We are already close enough with all that Micah has been there for, I don't want to get even more friendly. While I was having blood drawn, I was chatting with the phlebotomist about all of Micah's blood draws. Then when I was getting ready to leave she made a comment about congratulation on the pregnancy, and, yay, it's not much longer now until shes born. And I stopped, and thanked her but explained that once she is born she is going to need all of this stuff and so I'm not really excitedly counting down the days. I don't usually tell people what is going on with her, I usually just smile and nod and say thanks. But she works at the hospital so I thought she should know, I'll be back, a lot. 

Reality Sinking In

I am starting to come down from my high on the fact that Maelyn is going to come home. Since meeting with the fetal cardiologist I've just been in this happy cloud of the "good news". I went to my MOPS group and was so happy to tell people she is now expected to live. It felt like her heart issues are nothing. And yesterday I went to women's bible study and got to happily tell the women at my table that I'm having a baby girl in June. I left everything else out. 

I started researching the surgeries she is going to need and the life expectancy. They really don't have enough data about long term outcomes, but I think I saw somewhere it's about 80% survival rate for the first 10 years. After that no one can say. Now the reality of, she is going to need open heart surgery, is starting to sink in. Watching Micah go through the liver biopsy was so hard. I never wanted to see one of my babies go through surgery again. Now picturing sending my miracle girl into the OR for them to spread open her chest is going to call for so much more. More of God's strength and grace and love and healing. I don't know how I'm going to do it. Maelyn's whole life, day to day, she will live with the risk of sudden heart failure. How am I going to let her go to school, go to sleepovers, let her out of my sight? I know everyday of her life will be special and meaningful, but they will also be stressful and cautious. I'm trying not to worry about it, there is nothing I can do about it but take it one day at a time and continue to trust God. But I do need to come to terms with what life is going to be like. 

I still believe she has 4 months left to grow and for her heart to heal. I am excited to go back for more ultrasounds in a few weeks and see how much she has changed. I know God can heal her. But I also know that if He doesn't it's because He has other plans to use her life with a broken heart. I just need to prepare myself for that life too. 

Pray for Ben and Micah. They are such amazing boys. I am already worrying about having to be away from them so much for her surgeries. Pray for Tim and I, that we would be able to make time for us in all of this chaos. Pray that God would heal Maelyn's broken heart.