It all happened very quick. I woke up at my usual 4:00am to take my medication that I was on to prevent contractions and my stomach was feeling a little strange. At first I didn't think anything of it, I figured I just had to go to the bathroom; however I started to notice that the pain would go away and reoccur every 10 minutes. So at that point I decided that I should probably call the doctor. After calling the call service number that the hospital had given me two times with no response, my dad and I decided that we should just make the trip to the hospital. At that point my thought was, I would rather be turned away if it was nothing than have something happen. So I arrived at the Special Delivery unit around 6:00 am at which point that connected me to the monitors. They discovered at that point that I was having contractions every 6 minutes. As part of the protocol following prenatal surgery they don't want you to labor because it is stressful on your healing uterus from the surgery, so the physician informed me that I would more than likely be having Grayden. They gave me one last medication to see if they could stop the contractions; however it did not work. So around 7:00am we got a hold of Austin to tell him to get on a plane because we were going to be having our little boy. He booked the first flight available which was at 10:00am.
We were really hoping Austin could make it down here in time to see him delivered; however Grayden and the doctors had other plans. I had my c-section around 9:00am and Grayden was born at 9:36am. My dad was able to be with me during the delivery so he was able to see his fourth grandchild being born. Although we were a little sad that Austin wasn't able to make it in time, I was very thankful to have my dad with me in the operating room. It was not as bad as I thought it would be; however it was a very odd experience. I definitely did not like not having control and not having feeling in my body. I will not go into details though. Overall though everything went well with no complications.
Grayden's APGAR scores at birth were a 7 and 9. His coloring looked really good and he was crying when they delivered him. He did require oxygen though to help him breath. I got to see him briefly before they took him down to the NICU (neonatal intensive care unit). Once he arrived downstairs they decided that he needed CPAP, which is continuous positive air pressure to assist him to breath. This provides pressure into his immature lungs to help him breath and to avoid him having to work so hard. It is a common thing for babies born at this gestation to need some level of support to breath because the lungs are one of the last things to develop fully. And for some reason we are learning that white males often have the most difficulty.
Austin arrived around 2:30 pm in Philadelphia and came right to the hospital. Shortly after he arrived we were able to go down to the NICU together to meet out newest addition. Like most premature babies, Grayden has a lot of hoses and monitors connected to him so it is difficult at times and just makes you feel sad when you see all the stuff he is having to go through to be with us. He has quite a bit of blondish colored hair and is such a little cutie, even though it is hard to see him sometimes with all of the masks and covers attached to his head. (See below)
We knew that premature birth was the most prevalent side risk of having prenatal surgery so we had been preparing ourselves in the event that it happened; however, you just always hope in the back of your mind that you won't have to and that he would make it to the 37 weeks planned. It is discomforting knowing that on top of dealing with issues associated with myelomeningocele he now has to deal with some of the side effects of being a premature baby. All that aside, he is doing very well, especially from the spina bifida side of things. His little ankles and feet and toes are moving away. The urologists say that he is voiding his bladder on his own and they are no longer using a catheter (which could mean that he has unexpected function in that area, most babies with spina bifida that have a lesion above l5 have no function in the lower parts of the sacral region which includes bowel and bladder control and movement of the ankles/toes). A cranial ultrasound revealed that he has some level of ventriculomegaly still although the doctors say it is mild to moderate and there is no need to place a peritoneal shunt at this point. His head circumference has been measured at 25cm, 24cm, and now 23.5cm, which is another good sign that he does not currently have hydrocephalus. The repair site on his back looks great and from what the doctors say is some of the greatest they've seen. Spina bifida is such a complicated disorder with many different outcomes and his functional level throughout his growth and development could change at any time, so it is hard to get to excited about things but it is certainly better when things seem to be working than if they weren't.
Spina bifida aside, his prematurity has caused a few concerns. As mentioned above, he has been wearing a breathing mask that applies pressure to his little lungs and delivers elevated levels of oxygen to his alveoli in the lungs to help get his body's cells get what they need. The extra pressure helps assist him in his breathing and can be compared, as the nurse describes, to a person blowing up a balloon. The first amount of air you try to get into the balloon is hard to push in, but once the balloon has the first bit of air in it, it becomes easier to blow up. By maintaining constant lung pressure, it makes it easier for Grayden to breath on his own. What they have been finding; however, is that his percentage of oxygen saturation in the blood has been lower than normal. In trying to determine why, they ordered an x-ray and discovered that one of his little air sacs (alveoli) had ruptured; and therefore, the air has been escaping into the thoracic cavity and not getting into his blood as required. Because of this, they have had to put a tube into his chest cavity to remove the excess air. They also have intubated him in order to help him breath and to deliver surfactant into the lungs because they feel that he may not be producing it on his own at this time (again, another side effect of being premature and having underdeveloped lungs). We have been waiting to see him again today but have remained upstairs while these various procedures are being done downstairs in the NICU.
All we can do is wait. It really makes you feel helpless. We appreciate all of your phone calls, text messages, and e-mails and we are sorry if we can't respond to everyone. We will keep the blog as updated as possible in the event that we are unable to respond to everyone individually. So if people you know are asking, please try to direct them to the blog. awg