Hey everyone. Sorry it's been so long since my last post...life around here has been extra busy!
On December 13th, 2014 we welcomed our second daughter, Julia Anne Wookey, to the family. She was born weighing 9lbs 1oz and measuring 23 inches long. I knew she would be a big girl - we don't make small babies.
Labor and delivery went well. I started having contractions around 9am on the 12th and they steadily got stronger. Chad and I headed to the hospital around dinner time. The nurses monitored me and baby's heart rate for quite some time; Julia's pattern for her heart rate was a bit abnormal during my contractions so they wanted to keep an eye on it. We had the exact same scenario happen during my labor with Abby and in the end they decided to admit me and then the fun began.
I labored all through the evening and eventually succumbed to the pain. I asked for an epidural and they also gave me some laughing gas while the anesthesiologist made his way to my room. Chad got a kick out of me while I was using the laughing gas.....it gave me quite the high and apparently I was saying some pretty interesting things!
Once the epidural was in it was smooth sailing; it was the perfect epidural. I could move my legs and feel the tightening of every contraction without feeling the pain. I got a little bit of rest (as much rest as you can get in a hospital with a nurse constantly taking your blood pressure and checking your contractions while hubby snores on the couch beside you!) and it was finally time to push by about 4am. My contractions had majorly tapered off - there were huge gaps of time between them - so I "pushed" for half an hour but it only took three contractions to get little Julia out at 4:38am.
She had the cord wrapped around her neck so the doctor had to cut it. Chad was going to cut it just as he had done with Abby, but medical necessity took over. It was not a big deal in the end and paled in comparison to abnormalities that were quickly noticed with our baby girl.
We found out that our little munchkin was born with Apert syndrome. It's a very rare genetic abnormality. We've been told it happens to around 1 in 100,000 babies, so our Julia is very special. It's a random chromosomal mutation that happens in the FGFR2 gene that has very significant effects. The mutation causes craniosynostosis and syndactyly. Those big medical terms basically mean that some, or all, sutures in the baby's skull are fused prematurely and there is fusion of the fingers and toes. The premature fusion of the sutures causes increased pressure on the brain and doesn't allow for regular growth and expansion to occur. This along with the underdevelopment of the face causes people with Aperts to have different shaped faces and heads. Also, due to fetal development malformations there are eye problems and respiratory issues. Babies with Aperts can be born with cleft palates as well. All you need to do is Google the syndrome and you'll be bombarded with information and pictures.
We are SO thankful in regards to Julia's health. Yes, she has Apert syndrome but she has mild presentation of a lot of these issues. She doesn't have any palate issues so she eats, breathes, and sleeps just like any other newborn. Her face and head are definitely differently shaped than a child without Aperts but for now I get to treat her just as any other newborn would be treated. It's allowed for a feeling of normalcy in our household which has been such a blessing.
During our stay at the Children's Hospital in Vancouver she had an x-ray done of her head and neck and an ultrasound done on her brain. The doctors said there may be possible fusion of some of the vertebrae in her neck but they wanted to look again once she was a little bigger. The ultrasound revealed that her brain looks really good which was a huge relief. Apert babies can have some pretty major hydrocephalus and there can be abnormalities within the parts of the brain as well. There doesn't seem to be any increased pressure on her brain and her fluid levels are normal so there's no major issues to be addressed immediately.
We will be having multiple appointments with neurology, plastics, and ophthalmology along with our pediatrician. There is no concrete plan yet but my understanding is that Julia's first surgery will be around 6 months of age to begin the separation of her little fingers and toes.
Apert kids will typically undergo 20+ surgeries in their lifetime. I can't even fully comprehend that right now....but I do know we'll be logging many hours at Children's Hospital. We have a great team of doctors all working to give Julia the medical care and attention she will require. At this point in time we know she will have surgery done around 6 months of age on her fingers and toes and then another surgery between 9 months and a year old for some cranial reconstruction.
There are many issues that will need to be addressed in the months and years to come. Surgeries, recovery time, eye appointments, dental appointments, physical therapy, developmental tracking....to name a few. We're still unsure as to whether Julia is able to hear or not. She failed her screening tests at the hospital so we are waiting to do a full audiology exam. If she has partial or full hearing loss we will be learning sign language as well. There is also the question of cognitive development. The majority of children born with Apert syndrome have mild to no mental disabilities but only time will show us the extent of Julia's situation.
The list can go on and on....BUT, I am choosing to take everything one day at a time. I get completely overwhelmed if I think about every single "what if" and so I choose to focus on the present and let God work out the rest. We have had such an amazing outpouring of love and support from family, friends, and total strangers. We are so utterly blessed and I cannot say thank you enough! We know that Julia was made perfectly and that she has a very special life laid out for her. It's not going to be easy but I'm optimistic that it will be rewarding and totally worth it.
On December 13th, 2014 we welcomed our second daughter, Julia Anne Wookey, to the family. She was born weighing 9lbs 1oz and measuring 23 inches long. I knew she would be a big girl - we don't make small babies.
Labor and delivery went well. I started having contractions around 9am on the 12th and they steadily got stronger. Chad and I headed to the hospital around dinner time. The nurses monitored me and baby's heart rate for quite some time; Julia's pattern for her heart rate was a bit abnormal during my contractions so they wanted to keep an eye on it. We had the exact same scenario happen during my labor with Abby and in the end they decided to admit me and then the fun began.
I labored all through the evening and eventually succumbed to the pain. I asked for an epidural and they also gave me some laughing gas while the anesthesiologist made his way to my room. Chad got a kick out of me while I was using the laughing gas.....it gave me quite the high and apparently I was saying some pretty interesting things!
Once the epidural was in it was smooth sailing; it was the perfect epidural. I could move my legs and feel the tightening of every contraction without feeling the pain. I got a little bit of rest (as much rest as you can get in a hospital with a nurse constantly taking your blood pressure and checking your contractions while hubby snores on the couch beside you!) and it was finally time to push by about 4am. My contractions had majorly tapered off - there were huge gaps of time between them - so I "pushed" for half an hour but it only took three contractions to get little Julia out at 4:38am.
She had the cord wrapped around her neck so the doctor had to cut it. Chad was going to cut it just as he had done with Abby, but medical necessity took over. It was not a big deal in the end and paled in comparison to abnormalities that were quickly noticed with our baby girl.
We found out that our little munchkin was born with Apert syndrome. It's a very rare genetic abnormality. We've been told it happens to around 1 in 100,000 babies, so our Julia is very special. It's a random chromosomal mutation that happens in the FGFR2 gene that has very significant effects. The mutation causes craniosynostosis and syndactyly. Those big medical terms basically mean that some, or all, sutures in the baby's skull are fused prematurely and there is fusion of the fingers and toes. The premature fusion of the sutures causes increased pressure on the brain and doesn't allow for regular growth and expansion to occur. This along with the underdevelopment of the face causes people with Aperts to have different shaped faces and heads. Also, due to fetal development malformations there are eye problems and respiratory issues. Babies with Aperts can be born with cleft palates as well. All you need to do is Google the syndrome and you'll be bombarded with information and pictures.
We are SO thankful in regards to Julia's health. Yes, she has Apert syndrome but she has mild presentation of a lot of these issues. She doesn't have any palate issues so she eats, breathes, and sleeps just like any other newborn. Her face and head are definitely differently shaped than a child without Aperts but for now I get to treat her just as any other newborn would be treated. It's allowed for a feeling of normalcy in our household which has been such a blessing.
Two days old - at Children's Hospital
During our stay at the Children's Hospital in Vancouver she had an x-ray done of her head and neck and an ultrasound done on her brain. The doctors said there may be possible fusion of some of the vertebrae in her neck but they wanted to look again once she was a little bigger. The ultrasound revealed that her brain looks really good which was a huge relief. Apert babies can have some pretty major hydrocephalus and there can be abnormalities within the parts of the brain as well. There doesn't seem to be any increased pressure on her brain and her fluid levels are normal so there's no major issues to be addressed immediately.
We will be having multiple appointments with neurology, plastics, and ophthalmology along with our pediatrician. There is no concrete plan yet but my understanding is that Julia's first surgery will be around 6 months of age to begin the separation of her little fingers and toes.
Her toes are all fused but are still quite flexible and each toe has a nail
Her fingers are not as lucky - they are bunched together and a
couple of the fingers share one nail bed
Apert kids will typically undergo 20+ surgeries in their lifetime. I can't even fully comprehend that right now....but I do know we'll be logging many hours at Children's Hospital. We have a great team of doctors all working to give Julia the medical care and attention she will require. At this point in time we know she will have surgery done around 6 months of age on her fingers and toes and then another surgery between 9 months and a year old for some cranial reconstruction.
There are many issues that will need to be addressed in the months and years to come. Surgeries, recovery time, eye appointments, dental appointments, physical therapy, developmental tracking....to name a few. We're still unsure as to whether Julia is able to hear or not. She failed her screening tests at the hospital so we are waiting to do a full audiology exam. If she has partial or full hearing loss we will be learning sign language as well. There is also the question of cognitive development. The majority of children born with Apert syndrome have mild to no mental disabilities but only time will show us the extent of Julia's situation.
The list can go on and on....BUT, I am choosing to take everything one day at a time. I get completely overwhelmed if I think about every single "what if" and so I choose to focus on the present and let God work out the rest. We have had such an amazing outpouring of love and support from family, friends, and total strangers. We are so utterly blessed and I cannot say thank you enough! We know that Julia was made perfectly and that she has a very special life laid out for her. It's not going to be easy but I'm optimistic that it will be rewarding and totally worth it.
Love you guys. Praying for you daily!
ReplyDeleteThank you so, so much!
DeleteThank you so much for sharing this post. I have been thinking about baby Julia and wondering how your little family has been doing these last weeks.
ReplyDeleteYou and Chad are going to be the very BEST parents for this little beauty and she is going to do some great things. Be blessed on this new journey, find peace in the quiet and comfort in the here and now.
There's not much quiet around here lately so I most definitely should look for peace in those fleeting moments! Thanks for your love and support :)
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