After our second doctor's visit, and our decision not to abort our child, we made an appointment with the perinatal. This was the third appointment and ultrasound within two weeks for us. I had no problem with extra ultrasounds. Knowing that we might not have much time with Isaac made each one special, because we were able to see him alive and growing.
I remember seeing Isaac on the screen at the perinatal and thinking he looked so much bigger, even only a week later. Its amazing how God creates life, and how there are so many details that goes into pregnancy. Children truly are a miracle. Our OB had told us already that Isaac had Anencephaly, which is a neural tube defect. As a baby develops, if the neural tube doesn't close properly, it can result in Anencephaly, where the skull and brain fails to develop. There is a brain stem, which is what allows the heart to beat and organs to function, but after birth children with Anencephaly usually only live a matter of hours, or are stillborn. Anencephaly can be genetic, or it has been thought to be from a lack of folic acid. We were hoping to find out more about why this may have happened. We started our appointment with a nurse. As she was looking Isaac over she confirmed that Isaac's head was indeed missing a skull. Everything else looked normal, though. As we continued our appointment with our perinatal doctor, he found that Isaac did NOT have Anencephaly like we were told. Instead, it was an amniotic band that attached to Isaac's head very early on in the pregnancy, probably even before we knew I was pregnant. Since this happened so early, it hindered the development of his skull. The question that both Kaiwi and I shared was, "So what does this mean?" We had no idea what an amniotic band was. Our doctor told us it happens when a layer of the amniotic sac breaks or tears, resulting in strands floating around inside the amnion. These bands can attach to the baby, but usually its an arm or a leg that is affected. We were told to think of it as a rubber band. If you have a tight rubber band around one of your limbs for long enough, it can cut off the circulation and your limb could die. Many times a child can still survive from amniotic bands, depending on where it has attached itself to. A child could be born with as little as a mark on his body, or a missing limb. This is why it is commonly referred to as Amniotic Band Syndrome. Every case is different in severity and outcome. Unfortunately our case was very severe, and there was nothing that could be done. There was some good news in all of this. Meeting with the geneticist we learned that amniotic bands are not genetic. They are rare and random, and we should not have to worry about it again. Its like winning a lottery ticket. Could it happen again? Yes, but we have as much chance of it reoccurring as anyone else does. Our perinatal told us much of the same things as our OB did. The pregnancy is no risk to me, other than that I have a higher risk of preterm delivery. Isaac would grow and develop, but he could be smaller than normal. One slight risk was that if he didn't have the brain function to swallow some amniotic fluid like babies normally do, I could develop an excess of it. Thankfully that never happened though. So we left the doctor and life continued on. My pregnancy went along really well, despite our situation. I can honestly say that I experienced hardly any negative pregnancy symptoms. No swollen ankles, no heartburn, no cravings {except for a few times I had to drive down the road for some chow mein}. There was some tiredness and some morning sickness in the beginning, but as long as I had food in my stomach I was fine. I don't tell you this to brag. I honestly think the Lord blessed me with an easy pregnancy physically because it was difficult emotionally. Well, one weekend when I was about 14 weeks along I got up early in the morning to go to the bathroom. I was spotting. I woke up Kaiwi and we drove to the ER. I remember thinking on the way, "I knew this was a possibility but I'm not ready! It's too soon!" I really thought we were about to lose Isaac. Well, after a few hours in the hospital and yet another ultrasound {yay!}, the spotting stopped and Isaac was perfectly fine. The doctors there told us that it was a possibility that I could miscarry, but there was no way of knowing for sure and nothing they could do. They told me to watch for cramping and spotting but that I was fine. We went home, I took it easy for the rest of the weekend, and nothing else happened. After that the rest of my pregnancy was pretty much normal. I had all the regular doctor visits, and at each one our OB commented on Isaac's strong heartbeat and how healthy he was despite his condition. This led us into the topic of organ donation. Kaiwi and I were both in agreement that donating Isaac's organs was something we definitely wanted to do. If there was any way we could help someone else's child in need we wouldn't hesitate to do it. We were told by our OB that Isaac had to get to 37ish weeks and at least 6lbs. That in itself would be a stretch, but we we knew it would be no problem for God to accomplish if it was His purpose. At 32 weeks we had another ultrasound at the perinatal. Isaac was so big! We watched him as he moved around, not quite as energetically as before since he was running out of room. The nurse pointed out that he had a little bit of hair around his ears, and that he was doing practice breathing motions. We watched him as his chest expanded and contracted just as if he was breathing. It was at this ultrasound as we watched him that Kaiwi came up with the name Isaac. I loved it. From then on that was his name. We took a good look at all of Isaac's organs, and they were all perfect and healthy. We talked with the perinatal about donation and he gave us resources on how to get the process started. He reminded us again that donation would be a stretch, but that if we could do it it would be a huge blessing to someone else. The day after our ultrasound I took a plane to go see my family and to be in my sister's wedding. I had no idea at the time that Isaac would come just two weeks later. If I had known I probably wouldn't have been travelling, but God had everything worked out, and His timing was perfect.
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About Us...Welcome! My name is Marie, and I have been married for 5 years now. We have one beautiful son, Isaac, waiting for us in Heaven and another son, Hayden, here with us! I hope to share with you more about our journey- where we have been and where we are going. Archives
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