On Wednesday, a new reality sunk into our lives. We went in for a level 2 ultrasound to see if our little peanut had a cleft pallet. We were told at our original 20 week ultrasound that there was a “shadow” on the lip and they wanted to look into it further. We were also told that baby was in less than 3rd percentile for weight and had cysts on the brain. Both sound scary but after researching and talking to some doctors we realized that the cysts usually always go away by birth and since we have smaller babies anyway, the weight should even itself out. A cleft pallet was hard, only because you don’t want your little babe to go through anything they shouldn’t have to. Surgery on my baby is not at the top of my list. After having to wait a month to have our level 2 ultrasound, and a lot of prayer and peace about it, we braced ourselves and were ready to see if peanut would be born with a cleft pallet.
As we were getting our ultrasound I was so excited to see little babe in the womb. Baby was so cute as always, and our technician had told us she was going to be super thorough on this ultrasound, from head to toes and boy was she ever. She came to the head last, and indeed we found out peanut would be born with a cleft pallet. My eyes watered over and Ry squeezed my hand, but we were prepared for this. Surgery is amazing and so many people told us you would barely know.
Baby is laying on it’s side. Even at 1 lb and 4 oz you can see the chubby little cheeks. Taking a little rest now with it’s eyes closed and under it’s nose is a dark spot. On baby’s upper right lip is the cleft pallet.
Then the doctor came in.
A doctor we had never met before came in and shook our hands and said, “I’m very concerned for your baby.” I was thinking the same thing, poor thing was gonna be born with a cleft pallet which would mean a feeding tube, no nursing at first, surgery within the first year of it’s life. We’ve never dealt with anything like this before. But then I sensed that wasn’t what she was talking about. And soon our world came crashing to a halt. I don’t remember much after this point. She just starting pointing out one thing after another. Your baby only has 1 kidney, there is possibly 2 holes in the heart, the line in the brain does not have an opening which means the right side and the left side may not be connecting, babies hands are always clenched and aren’t opening up, it has a cleft pallet, it’s weight is low. I mean how much can a mom take at one time. And it just didn’t stop. I looked back up at the screen at what seemed like a perfect little baby in my eyes. Lord, we were just supposed to be coming in to see if baby had a cleft. I didn’t prepare myself to hear this. How could you???
And after the list was done she told us, it doesn’t look good. All of these signs are pointing to a genetic disorder called trisomy 18 (a genetic disorder in which a person has a third copy of material from chromosome 18) or trisomy 13, (a genetic disorder in which a person has three copies of genetic material from chromosome 13, instead of the usual two copies.) And she went on. Most babies die inutero with only 10% making it to their first birthday. Ryan was so strong for me. I think he knew I needed it. He somehow was able to listen while my mind blurred and I couldn’t hold in the sobs that kept escaping. I was not prepared for this. But, she said….there are options. And continued to tell us of a great man that use to deal with these “situations” that was killed in a church. Ryan wasn’t quite sure what she was talking about but I knew right away. She was talking about the doctor who performed late term abortions. Dealing with the situation meant killing my little baby. My mind was numb but was at least able to say that that was not an option for us. Even though my head was whirling as to what this little baby would be like? Would it even look normal?? Could I handle this news?? It’s all too much.
and I kept seeing this on the screen above us..
We then went across the hall to talk to the genetic counselor who asked if we were going to “continue on with the pregnancy.” I just still can’t believe that’s an option. She told us a little more about the chromosome disorders and I think she explained it, although all I remember were the words, setting up hospice care if the baby is born, funeral planning and talking about getting an amniocentesis to run the genetic tests to make sure this is what we were dealing with.
I dont really remember the drive home. I had a headache by the time we went to pick up the kiddos. We tried to call close family and friends and fill them in. The emotions were so raw. When we got home we told the kids that the baby was a girl and that she was sick. That she might not come home to live with us, but instead might go to live with Jesus. They shook their heads and two minutes later Kynlee brought the pictures of lil girl and said, is this baby!!! Can you show me!! There is something so precious about the innocence of children.
I can’t lie and say that my mind didn’t start whirling like crazy. Lord, I can’t do this. I can’t be a mom to a super special needs baby. This will change our lives forever. This is too much. My prayers were please take this little girl now so I don’t become more attached, so that I don’t have a baby that I have to say goodbye to after a year, so that I don’t have a baby that I need to be a constant nurse full time for the next 5 years of my life. It’s amazing how human nature takes over. And sad.
That night I started googling like crazy. I wanted to know what we were up against. After leaving the doctor there seemed like no hope. They told us that we can doctor with our normal doctor since there is no special treatment needed. They can do the same thing for us that they would at Children’s. Basically wait for your baby to die. I told the Lord, God please take this baby now if you are going to so I don’t have to go through this anymore. Just take her fast. And then I found pictures. So many pictures of kids with Trisomy 18 and 13, also known as Edwards Syndrome and Patau Syndrome. And what I couldn’t believe is how normal they looked. They were precious. My prayers started to change.
These are some of the symptoms of Edwards Syndrome….
and here’s some faces of it…
Wednesday night we went to bed and Ry prayed over my belly and for this little girl. She was kicking like crazy and Ryan could feel her. It was almost as though she was telling us she’s alright. I’m a fighter mom and dad. My eyes could barely open anymore and sleep didn’t come that well.
Friday Ryan and I went in for an amniocentesis, where they stick a needle into your belly and extract 2 tablespoons of fluid from your amniotic sack to get the babies old skin cells that have flaked off. They tell us they will have the results in 10-14 days, a long time for this mom to wait. I can’t tell you that I’m all too hopeful for these results. With the list we got I’m pretty sure it doesn’t look the best. I was excited to see little girl again though. She seems like such a fighter! I have to tell you that one of the hardest things about this process is feeling her kick. I try to run from reality but every time I feel her kick I am brought right back to it. But there is no easy answer. When I don’t feel a kick after an hour or so I start praying like crazy to feel one. She usually obeys:) What a sweet girl. I’m praying the Lord gives me strength during this waiting game of not knowing what is going to happen. How long I’m going to get with my little girl. Because He does know. And she wasn’t an accident.
13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
Prayers have been holding us up during this time, and I thank you so much for them. I can already see the effects of them. Thursday after we got the news I got a call from a doctor at my clinic. My doctor was out of town and he was taking her calls. I found it quite amazing that another doctor would want to take this call. And soon I found out it was more than amazing, it was Jesus taking care of us. This doctor just happened to be a deep man of faith whose first words were, “I think you know why I’m calling, and I just want to offer you my deepest prayers.” I could tell he was sincere. He proceeded to say that him and his wife have 3 beautiful blessings but they lost one baby at 18 weeks. He knew the pain of losing a child but still didn’t pretend to know what we were going through with this circumstance. He allowed me to ask questions and I just wanted to know from a Christian doctors perspective, what would you do?? If this were your baby?? He said what a privilege it is to know that we know God has a bigger plan, and a better place than we can imagine. That he would love on this baby as long as the Lord gave him and let this baby join Jesus at the right side of the throne of God when the time came. *sobs and tears, but it’s so true. We as Christians can have a peace about this. It doesn’t take away the pain, but it makes it easier knowing they are going to a much better life. After telling him thank you so much for the phone call that I believed was not a “coincidence” and him asking if he can put my husband and I on their prayer chain, we ended the chat. God is good.
We have also been flooded with emails, text, messages, visits, phone calls, gifts, food, and love that is so amazing in the body of Christ. Thank you to everyone!! Here are just a few beautiful gifts we have been blessed by in the few shorts days we have been delivered this news…
and a fridge full of food…
So I’m writing this blog part as grieving and therapy for myself, part to keep the story straight for everyone who heard about it, but mostly for prayer. Prayer for this little baby girl.
Ry and I decided to name her and amazingly I had my girl name picked out from the beginning. After I found out about baby girls condition I hate to admit it but I wasn’t sure I wanted to use my girl name on a little girl that may not be with our family long. Selfish. But the more I thought about it the more I realized the name was meant for this little girl. So Ryan and I just ask that you join us in prayer for this little girl, Juliet Faith..that we like to call Jules:) Pray that she makes a huge difference for Jesus. That she is used by God as well as her story. That through it all God receives the glory. And that she is strong because selfishly as well I want to meet her and see her beautiful face!!
I’m gonna leave you with this you tube video that a friend actually showed me a few years back. I cried then when I watched it but had no idea it would come back full circle. I wouldn’t have even remembered what the little boy suffered from had we not gone through this. I think it is just an amazing testimony to Jesus and pray Jules will be as well!
Thank you for your love and support!
The LORD gave and the LORD has taken away; may the name of the LORD be praised.