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
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