I'm not sure even where to start but I know a lot of people have had questions, and I wanted to share my feelings on having Oliver and a lot of emotions I've gone through during this time. Everything in my prenatal care and ultrasounds were normal, so this all came as a big shock for us.
Oliver was born 1 week early and his labor was my easiest. The day before was a little stressful though. My water was slightly leaking throughout the day. They had me come in to the birthing center and confirmed it was my water leaking. They have protocol that you need to be in active labor within 24 hours of it leaking or you need to be transferred to the hospital, so they wanted me to come in that night to induce me. I really didn't want to be induced. Brendan even had me go and do acupuncture. The lady said 75% of her patients start labor within a few hours. Later in the evening we came in to the birthing center and I explained my concerns. They said they were a little lenient with the time, so I could go home for the night and come in the morning if I hadn't started labor. I think an hour later my labor started and it was active labor. I labored for one hour at home. I went into the birthing center and Oliver was born an hour later. My contractions weren't that bad, and pushing was only for 15 minutes maybe.
When they placed Oliver on my chest, I was relieved he was out and I was done pushing. I didn't really see his head at first and then he moved his head and I looked down and saw the bump sticking out of his head. Very concerned I asked what was wrong with his head. My first thought was maybe it just got squished coming out and it would be fine. The midwives said they were not sure. Then I saw his nose and the skin tags on his ear and kind of started freaking out realizing something was really wrong with my baby. The midwives said we are not sure what's wrong so we will have to go to the hospital and have him checked out. I was in shock and crying. The midwives were trying to calm me and told me to talk to my baby, tell him you're glad he's here. I guess he was a little blue, so they gave him some oxygen and started rubbing him and then he was fine. I was sitting on a birthing stool with Brendan behind me, and my arms were on his knees and I could feel him shaking. We had to wait for my placenta to come out, which was only a couple more minutes. Oliver started rooting to eat, so we cut the cord, and I got up in the bed and fed him for maybe 10 minutes He had opened his eyes up more, and I could see some kind of white lump on his eye too. They checked him and all of his vitals were fine, and everything about him seemed normal except for the facial anomalies. I got dressed, and we strapped the baby in the car seat and followed the midwives over to the hospital, which was only a couple minutes away. They put Oliver in the NICU and were monitoring him, but everything was fine. His heart rate and breathing were normal. They said we would have to wait until the morning to have some tests done, including a CT scan on his head. We ended up being in the NICU for 20 hours I think, which was much longer than needed. They had to do tests, and we had to wait for them to be analyzed by the radiologist, and then they were trying to make appointments for us up at Primary Children's hospital with some specialists.
Those hours at the hospital were agonizing. I didn't know if there was a tumor on my baby's head and if he would even live. I was a wreck just bawling all day. Since I hadn't given birth at the hospital, and I was exhausted and hadn't slept all night, they gave me a room to lay down in. I remember walking down the halls to the room and seeing all the cute newborn baby pictures on the wall and just wishing my baby was born whole and normal like the pictures. I got into the room by myself and cried uncontrollably for a long time. I got on my knees and poured my heart out to my Heavenly Father. I remember telling him that life was already hard enough last week just taking care of my three kids, how could I possibly get through something like this? The thought came to me that I would really have to rely on my Savior more than ever. Later in the day Oliver and I were given blessings by Brendan and his dad. What stood out to me in my blessing was that this baby would bring peace.
I guess I will fast forward to now, 11 weeks later, and all the updates and information we have. Oliver's left side of his face didn't fully develop for unknown reasons. Something went wrong with his midline. It's interesting because if you cover up the left side of his face he looks normal. He has a cleft nose, a dermoid cyst on his eye, skin tags on his ear, and part of his skull didn't form. The front part where the skull didn't form is called an encephalocele, which is a rare birth defect. His MRI showed us that what is sticking out of his skull is not his brain, but fluid with maybe some scar tissue on the front. The neurosurgeon and craniofacial plastic surgeon will do a surgery together where they cut a part of his skull out of the side and use it to reconstruct the front of his skull. At this time they will also remove his skin tags on his ear. The part of the skull that they cut out will grow back within 6-8 months. This will be one surgery of how many we do not know. They think that the encephalocele could be pushing down on his eye sockets and spreading them a little, so when they remove the encephalocele they want to see if the sockets will come together on their own. Also in the MRI you can see that none of his actual brain is sticking out of the skull but that the left part of his brain has shifted forward more because there was no bone there, so when they do the surgery to repair the skull, his forehead will probably not be symmetrical, so they will do more plastic surgery for that later. They will also probably fix his hairline later too. They won't be able to fix his nose until he is 2 or 3 because they will take cartilage from his ear and his ear still needs to grow bigger. The first surgery was going to be in October originally, but they now have it scheduled for January 20th. They want Oliver to be as big and strong as possible before undergoing such a major surgery, but they want to do it before 7 months so the skull will still grow back.
The CT scan and MRI also showed that he has ACC (agenesis of the corpus callosum) which means a small piece is missing from his corpus callosum where the left and right brain communicate with each other. There are people that have this and lead completely normal lives and are of normal intelligence, but there are also people with mild to severe problems related to this. Some of them could be with his gross motor skills and speech. We have to wait and see. He also has something called polymicrogyria which means he has extra folds in his brain. We were told because of this he is at risk for seizures throughout his life. His is on the mild side though because it is on one side of his brain in a small area behind the encephalocele. Lots of people also have this and have no seizures and problems. So those are the two major concerns with him cognitively that we know of. One doctor said he will write his own story. We will have to wait and see if he hits his milestones as he grows and develops. He could be totally fine, or have lots of delays and other problems.
We also met with a pediatric ophthalmologist about Oliver's eye. He has a dermoid cyst on his iris and white part. It is putting pressure on his eye and causing a slight stigmatism right now. There are also some adhesions on his eye where his pupil and the lens stuck. Just another part of it not fully developing I guess. We are patching his strong eye for an hour a day to train his brain to use the other eye. We will continue to see the ophthalmologist every 6 weeks to watch it. I guess there is also a risk he could develop a cataract. He will start wearing glasses probably when he is 1 years old. We actually saw two ophthalmologists and they both said dermoid cysts, skin tags, and clefts are usually a part of Goldenhar Syndrome. I've googled that a lot and noticed that a lot of his other malformations of the brain were also symptoms of Goldenhar Syndrome, but when I mentioned it to the craniofacial plastic surgeon he didn't think so. He operates on them and they usually have one side of their face like their jawbone smaller than the other side of the face and he doesn't have any of that. We have an appointment with a geneticist, but not until January because they are short on geneticists. We've already had genetic testing and that came back normal. The geneticist just looks at symptoms and can tell us if he has Goldenhar or another syndrome. We will hopefully find out more then.
It has been really stressful finding out more information about each of Oliver's symptoms and going online and googling all of them. There is usually a spectrum from mild to severe and reading about the severe problems stresses me out. At times I think what will the life of little Oliver be like? Will he be able function and get a job and live on his own? Will we care for him his whole life? Will he look normal or be made fun of? I've had a lot of peace and comfort that it will be OK, but I know that doesn't mean he will be normal or how I want him to be.
As time has gone on there is a new normal for our family, and that was really hard in the beginning. Although I'm most concerned about Oliver cognitively, looking different and sticking out is really hard. The doctors make it sound like he will look pretty normal after all of the surgeries, but it is still a major stress. It was really hard in the beginning to take him out in public. I stayed in a lot because I didn't want people staring at my baby. When he was about 3 weeks old Brendan said I needed to get out and do something, so we went up to Mirror Lake and the Upper Provo Falls. I had the baby in my carrier and a lady came up and asked how old my baby was and all I could think of was that she was staring at his deformities. I thought do I say something about it or act normal? I didn't say anything. Another time I was at Sprouts grocery shopping with just Oliver, and I had him covered in his car seat and he started getting really fussy. I needed to pick him up, but was really anxious about taking him out. I was in the produce section which is in the middle of everything and there were lots of people around me. When I pulled him out, I felt all eyes on me. I struggled to fight back the tears. It was almost like this awkwardness where people were trying to act normal and get past my cart, but they were a little in shock at what my baby looked like. I wanted to get out of there as fast as possible. I had to keep telling myself Dana it's OK this is your baby. Brendan and I had similar experiences when we would go up to Salt Lake for doctor's appointments and then go out to eat after. At back to school night there were a few people that said let me see your baby and went to pull off the blanket and then didn't know what to say when they saw him. It was just difficult.
We are in love with Oliver, and don't even notice his deformities now. I'm sure a lot of you know who Stephanie Nielson is. She was burned in a plane crash and has a blog and wrote a book. I think of what she wrote on looking different and having people stare at you. One experience she shared was when she was pregnant and at her son's school and his friend was staring at her and her son said, "What? You've never seen a pregnant lady before?" Her burns and looks were normal to him. I think because I am so comfortable with Oliver now, it doesn't bother me as much. I'm fine taking him out in public now and know people are staring, but it's OK. I go with the kids to soccer, dance, the school, etc and hold Oliver in the open and kids especially stare at him and sometimes ask what's wrong with his head, and I just explain that he was born like that, but he will have some surgeries, and we move on.
These past two months have been challenging at times, but there have been so many blessings along the way. We've had so much support and love from family and friends. I have a lot more to write about blessings and tender mercies, but I'll save those for another post. I'm going to try and keep up with my blog for a little longer to give updates on Oliver.
These pictures are when the kids met Oliver for the first time. They had stayed the night at Brendan's parent's house and the next morning Brendan picked them up and took them out to breakfast and explained to them about Oliver and that he was special and told them about how he looked. Hazel was really upset about it, but when she came in and saw him she had a huge smile on her face and wanted to hold him. Niels was very excited to hold him too. Hattie was stand offish the first day. She was really worried about touching his bump and accidentally hurting him, but the next day she was fine. She asked more questions about why part of his nose was missing. In fact I think she is the one who is always trying to hold and touch him the most. She loves him!
These two pictures are when Oliver was one week old.
I took these pictures when Oliver was 10 days old. Hattie was always posing or making faces in her pictures. I love how she is more into her pose than supporting the baby's head. He looks exhausted.
These are from Oliver's baby blessing and he is 9 weeks old here. He is starting to smile and coo and develop a personality, which is fun. I will do a whole post on his blessing soon.