Wow! What a week!
We had a good start to the week, and especially enjoyed having Grandma Allen come and visit! We had fun with friends on Tuesday night at Tucanos celebrating Mitch Marsh's Birthday and enjoying being together.
Unfortunately, Mommy wasn't feeling very well that evening and slept terribly that night because she was in so much pain. She was having contractions, but nothing close enough together to make her thing she was going into labor, but there was so much pressure on her pelvis and she had such terrible lower abdominal cramping that it kept her awake for most of the night.
We already had a Dr.'s appointment scheduled to see the Neonatal Specialist and Genetic Counselor, so we didn't call our OB/GYN or worry about anything quite yet, knowing we could get some answers at our appointment first, and then if things continued to get worse we would call our OB/GYN.
Grandma Allen joined us at the appointment where we were able to get a very thorough ultrasound of our Sweet Paetyn. It was so fun to see her and how she is moving and growing! She has the cutest little bum that she loves to show off! The Genetic Specialist talked to us about the two possible causes of her condition while the Neonatal Specialist looked at Paetyn on the ultrasound a little more.
One of the possible reasons why Paetyn developed Acrania is because of a Neural Tube Defect. These can be common and are often related to conditions such as spina bifida. Although Neural Tube Defects are more common, there was only a 2% chance of this occurring again in future pregnancies, and for added precaution, Mommy would be prescribed extra Folic Acid to take along with pre-natal vitamins for the first two trimesters of any following pregnancies.
As we were discussing this with the Genetic Counselor, the Neonatal Specialist stopped us and showed us some findings she had come across on the ultrasound. First of all, Paetyn's head was very low, as we have noticed it has always been when we have done ultrasounds. This is one of the reasons Mommy was having so much pressure and lower abdominal pain. We found out that the reason she has never changed position is because some of the membranes of her exposed brain are actually connected to the amniotic sac. This isn't much of a concern, because when Mommy's water breaks, they will unattach and it shouldn't cause any problem. It also turned out to be a huge blessing because the attachment has kept her head safe as she moves since it has been in the same place. If she were able to flip as she moved, it is likely that her brain would have deteriorated much more, but instead it is still quite intact.
The Neonatal Specialist then showed us even more good news! In a part of Paetyn's cheek, she could see a pretty severe cleft that extended up most of her cheek to just below her eye. It looks like her nose may be a little of center and slanted differently also. This is such good news because instead of it being a possible Neural Tube Defect, we have confirmation it's not! Instead it confirms that her condition is caused by an amniotic band which tells us there is a 0% chance of this ever happening again and it is a complete fluke! I like to think of an amniotic band like a rubber band that can wrap around any part of the baby and restrict growth of that area. For Paetyn, the bands wrapped around the top of her skull, her cheek, and possibly her nose restricting proper growth. This restriction happened within the first few weeks of her life. We were so grateful to hear this good news and we loved seeing our sweet baby Paetyn!
Mommy started to feel yucky again that evening, but took some medicine and started to feel a little better. She was able to sleep well that night, but had a really hard time being on her feet for more than 10 minutes at a time. She stayed home from work on Thursday because she was so unsteady on her feet and kept having waves of pain. She called her Dr's office because the pain kept getting worse and they had us go over to labor and delivery. They monitored Mommy's contractions and Paetyn's heartbeat. Mommy was dilated about a fingertip, but that didn't change and they weren't worried about her going into labor. While they were monitoring her, our nurse that we work with from Angel Watch came in and we were able to talk with her. We weren't so concerned that Mom was in labor, but we were more concerned because Mom felt like her body was trying so hard to go into labor, but with Paetyn's condition she wasn't able to drop, or put enough pressure on her cervix for her to be able to dilate normally. Our Angel Watch nurse was able to communicate with our OB/GYN and we scheduled an appointment for the following morning with our OB/GYN to discuss what we would like to do from there for the comfort of Mom as well as what would be best for Paetyn.
Again, Mommy was in pain most of the night and could only be on her feet for short increments of time. We met with our OB/GYN and decided that since we had more knowledge about Paetyn since the ultrasound on Wednesday, it was very possible that Mom's body was trying to go into labor, but was physically unable to. After a lot of thought and prayer, we decided that it was time for Paetyn to come, so we scheduled a C-Section for Sunday morning at 9am.
It has been a bittersweet few days, but we are so excited to finally be able to meet our sweet baby Paetyn and we look forward to spending all the time that we can with her!