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. 

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. 

Our hearts

Yesterday we went for another ultrasound at the Platte River Perinatal Center. I am so thankful that my friend was able to watch the boys for us. She is a saint, with her own 1 year old, 2 year old and being about-ready-to-pop pregnant, she joyfully took our two and made us all an amazing dinner. 

While we sat in the waiting room, Tim and I were actually able to have a good and calm conversation about what what we would do if/when Maelyn passes. God has definitely been with us through this. When we started talking about it, we both had a peace and we had both been thinking the same things. We easily agreed on everything we talked about because we had both already had the same thoughts. I am glad that we were able to have that conversation that way. It felt like a pleasant conversation, not a morbid one. And this way we've already discussed it so if or when it happens we wont have to have a discussion. 

We met with a group of two doctors, a nurse and a sonographer who all specialize in high risk pregnancy and fetal diagnostics. This is what they do! They started a whole full anatomy scan. Maelyn was sitting upright and cross legged right on top of my bladder, with her hands all over her face, which is probably the worst position for the ultrasound. Watching this ultrasound was much different than the first. We asked a lot of questions and we knew what we were looking for. It was a really long and thorough ultrasound. Instead of watching her move and be cute, we were focused on what was actually there. We counted fingers and toes and I had them check four times for a cleft palate. They checked for several other things that would be an indication of her having a chromosomal defect and did not find anything new. She seems to look like a normal little girl. When they checked her bowels, they saw what the OB pointed out but they did not seem concerned as it looked minor. Her stomach and heart are still not inline with each other as they should be. We were told this isn't a big deal, it usually just indicates a heart problem, which we already can see. 

Then we got to her heart. Her little heart is a mess. There are definitely only three chambers. I kept staring and counting, hoping we would find a little fourth chamber hiding in there, but every time, only three. Apparently this is a rare but not super uncommon condition, I think it's called hypoplasic left ventrical (or right, they are not totally sure yet). The scary part for me was at the end when the sonographer sat there staring at her heart for a long time. I eventually asked what we were looking at and she started with, "well, I don't know." She could not figure out what was what, where both arteries were and where the arteries were going in and out. The doctor described her heart as twisted at one point. He also was not sure if it was the stomach out of place or if the heart is on the wrong side. I am not sure but it just sounds really bad. I wonder if this is worse that the typical hypoplastic heart. I asked a few questions about this heart condition but was told I would have to wait and ask the cardiac specialist. 

This doctor finally gave his findings. Obviously, the heart is an issue and they don't even know what they are looking at so they are referring us to a cardiac specialist at Colorado Children's Hospital. There they will do a full heart work up and they will figure out what is going on. Then with them we can formulate a plan for her heart. This doctor does not think that Maelyn has one of the most severe chromosomal defects and said there is a chance she doesn't have any chromosomal defects. But there is a chance that she may. We need to know if she does have any type of chromosomal defect because that will greatly affect her odds of surviving the many heart surgeries she is going to need. If she is totally fine, other than her heart, she has an 80% chance of surviving her first surgery. If she has a defect she has a 20% chance of surviving surgery. If she survives the first heart surgery she would still need 2-3 more. Other than that the doctor could not give a lot of information because he is not the heart specialist and we do not have a chromosomal analysis yet.

We decided to go ahead and do an amniocentesis in order to thoroughly check for any type of chromosomal defect. The amniocentesis was a very weird experience. The discomfort only lasted the night and I feel fine today. We should have preliminary results tomorrow, and more results in a week or two. We are going to meet with the cardiac specialists on Monday. Once we have all of the information we can start formulation a plan for her. I will most likely change my OB care to the Children's Hospital and deliver there so that she can go straight to surgery. However, we are living with the fact that her heart may stop working at any moment. With this heart there is also a very high risk for a still birth. While we left our appointment with some hope, Maelyn's chances of surviving are not great. 

I do have more hope. I do believe that God still has 4 months to straighten her heart out and heal her body. But I also still trust that she is His and if He needs to take her to be with Him, it's ok. We love our daughter so much, and we want what is best for her. I am wrestling with the idea of her struggling outside of the womb, when she is so cute and happy in there. 

On our drive home last night I checked my phone and listened to my several voice mails from parents and doctors. I was expecting a call from Micah's metabolic doctor with lab results and told him to leave the message. He said that Micah's labs were way down, from mid 600's to mid 200's (they are supposed to be under 150, but for Micah that change is amazing). I started crying, I needed that. They are not going to change anything about his treatment plan until we get genetic results back and they can tailor it to his type. They want to see him back in their office in a month to check his liver. This was all good news I needed. It is funny how when I had a bad day finding out Micah needed the biopsy, Maelyn made my day with that 8 week ultrasound. Then when I am having bad days because Maelyn is sick, Micah's test results come back better. The two of them already playing off each other, I'll tell you, they are already siblings. 

I decided to tell Ben about her this morning. I told him that he has a sister and her name is Maelyn but she is sick. He pointed out that she is the baby in my belly, and I agreed. Other than that he didn't want to talk about it. Then at breakfast he looked up from his bowl and just said, "I have brother and a sister and they are both sick". I just about fell over, luckily I was standing next to the wall. It broke my heart. He pointed out one thing I've be wrestling with and hoping he wouldn't notice. We aren't supposed to have 2 medically needy kids, that's not how it's supposed to work. And Ben, as the healthy one, shouldn't have to deal with that. Who knows what his idea of sick is right now. Micah has a cold, so he could just think of that, but he is a smart kid. In my heart, I think he knows. He is such a great big brother. He has been going out of his way all week to share and be nice to Micah. He went with us to Micah's blood draw yesterday and he did really well. He is always concerned for Micah and wants to be by his side when he comes to the appointments. 

I realized last night that it is now really ironic that the blog is called the heart of the Stockers. Also because Micah has a slight chance of developing heart problems due to his glycogen storage disease. So the blog is about our hearts for God, but also, literally, God healing our kids hearts. So pray with us that Micah's treatment keeps going well and he only keeps getting better. Pray that God heals Maelyn and fixes her heart. Pray that God protects Tim and I's hearts as we continue to grieve for our little girl. Pray for God to continue to strengthen and prepare big brother Ben. In general pray for finances, that insurance is forgiving and we can handle all the payments. Pray for scheduling. We have so many different doctors, it's hard to keep everyone's straight, and so many appointments I need to find child care for, I am getting overwhelmed just with that and Tim is taking a lot of time off work. Continue to pray for our sleep and the 2 am feedings. Pray for God's peace and presence in our home. Pray for God's will to be done and not our own. I pray that others would come to know Christ better through Maelyn's little life. 

Praise you God for all of my children. 

But you, O Lord, are a shield around me; you are my glory, the one who holds my head high. 
Psalms 3:3

Meeting Maelyn

The 20 week ultrasound is the highlight of pregnancy for me. I love seeing the baby move and all their little hands and feet. But most of all I need to find out gender and that is the most exciting part. With this pregnancy I was pretty sure the whole time that this was my baby girl. She had me so sick, the whole time, and more emotional. I knew she wasn't a boy. But I was still so looking forward to the ultrasound to confirm that she was a girl and we could finally name her! We were excited to tell Ben if he was going to have a brother or sister and tell him her name. I was thinking that if she was a girl I was going to get a pink tut and take a picture of the boys with it! 

On the way to the ultrasound I reminded Tim that as excited as we were, we have to remember that "technically" the ultra sound is meant to look for problems, but that had never been an issue with our boys and we are young, healthy and don't have any reason to be worried. Once we got in the room we were telling the friendly sonographer about Ben and Micah as fetus's and talking about this baby. We told her we wanted to know gender as soon as she saw it so that's where she started. We all saw it at once, she was definitely a girl! The rest of the ultrasound I was just processing having a GIRL and watching that little baby squirm and suck on her hands and toes. I loved watching her move and she looked so cute and perfect. The sonographer was very chatty and bubbly the whole time, talking about little girl. Looking back, I saw the problem but I was so distracted by her being a girl and the bubbly sonographer that I didn't think to ask. So once she was done we were told to wait in the waiting room for our appointment with the midwife and she would bring us out some pictures. Tim and I sat in the waiting room talking about having a girl, and what that would look like and we talked about names. We had one picked out but I had been having second thoughts. I told Tim I was leaving it up to him between the two names. We texted our siblings to let them know she is a girl. After about 40 minutes we went back for our appointment but then sat in the room for almost a half hour, still talking about baby girl. 

My favorite picture because that is a hand and a foot above her face!

Mouth open, sucking on hand

When the doctor came in I was confused because I was supposed to see a midwife. She told us that there was a scheduling confusion and the midwife wasn't in. I had seen this doctor the last time I was in when I was sick so she asked me how I was feeling. We talked about me for a few minutes and then she picked up her stack of paper and pictures. She casually and slowly told us that there were several concerns with the ultrasound and listed them off, one after another. Our baby only has three chambers in her heart. the heart and stomach are supposed to be inline on the left side of the body but our babies stomach is on the right and the intestines should look gray but showed up bright white which is an indicator of something in them. With all three of these things showing up she was pretty sure that it meant that our baby has a chromosomal defect, so she is going to draw blood from me so that they can extract the babies DNA and check for the defect. 

We kind of sat there in shock. I was trying to fight the tears because the way she told us I wasn't sure if it was crying material, but it sounded really scary. She asked if we had any questions. Tim double checked that they were sure and didn't need someone else to check. The doctor was sure that ultrasound was right. I was very concerned about the heart and asked if she could live with only three chambers. The doctor said, no, but if that were the only problem, she would need a series of 3-4 surgeries to fix her heart. But she said that a baby with a chromosomal defect would not survive the surgeries, and we could discus termination if we wanted. I finally really lost it and started to cry. The doctor then left us to process and said she would be back in a few minutes to get me for the blood draw. 

When she left we just held each other and sobbed. We had about 2 hours of happily envisioning our life with a healthy baby girl (not to mention the whole pregnancy) and then suddenly her whole world came crashing down around us. Her little life flashed before my eyes. Through the tears Tim said, "her name is Maelyn Aletta, she needs a name." We talked a little about outcomes, knowing it wasn't good and we swore that God could heal her, knowing that is the only option. The doctor came back and asked how we were doing..... and told us she was sending us to a perinatal specialist. 

We cried some more on the way home. We (sort of) held it together getting the boys, feeding them and putting them down for naps. We let our family know what we had learned, the best we could. And I stared researching online feeling like I had no idea what this all meant. My findings basically just confirmed my suspicions. It does sound like a chromosomal defect which will take her life. If it were just one of the three things, we might have a chance. But even if it is just one of those things it will mean a lot of surgery and intensive medical care.

I laid awake most of the night praying. Praying that God would give us a huge miracle. That we would go back for an ultrasound today and she would be better. But I am praying that if He isn't going to make her better that he would please take her home. Because in heaven she doesn't need her three chamber heart or her stomach and intestines. In heaven she is His perfect angel and she will not suffer through life without a functioning body.