Well, after much hesitation, I've decided to start a blog for our family. I'm hoping that this will be a way for everyone to keep connected and updated with us as we walk this journey with you. Let me post a bit of info for those of you who don't know what has been happening in our world for the last month or so.
BTW, I am pregnant again with our 3rd baby due September 27
th!
April 20th: I get a phone call from Dr. Seligman around 3:00pm. He proceeds to tell me that my quad screen came back normal for Down's Syndrome and Trisomy 18, but at an increased risk for spina bifida (1:33) and that it means there is a 97% chance everything is normal. I struggled with that concept for a few minutes despite having been a math teacher, but I think my brain was just trying to think through everything he just said. I am scheduled for our BIG ultrasound on the 28th to find out if it's a boy or girl, but begged him to see me sooner. I just didn't think I could wait another week. The nurse calls me back and says to come in the next morning at 8:00 for an ultrasound and I am relieved.
April 21st: Jason and I head to the dr and my great friend Lisa, comes over to stay with the boys so we can go together. She has been a lifesaver with this pregnancy and I owe her big time. Lisa, you are the best! Thanks for all you have done for me. So, the sonographer looks at the baby's spine which is completely normal Allelujah! and then starts to ask me if I've been leaking amniotic fluid. I tell her no and she looks concerned. She starts to look for vital organs, but still not saying much. She does tell us that she is having a hard time seeing the kidneys, but that it could be from the reduced amount of amniotic fluid. At 9:30, we have an appt with Dr. Seligman and decide to come home, pick up Jackson and take him to MDO. As I am telling Lisa about the sonogram, she tells me that it sounds like Potter's Syndrome, a condition her mother had with one of her pregnancies many years ago. Still not knowing for sure, I at least knew that whatever the doctor was about to tell us, we were in for a long journey ahead.
9:30, we are pulled into Dr. Seligman's office and wait for him to come in. He gives me a big hug and reconfirms to me that I'm going to be ok. For a moment I feel relief. He sits down and tells us that the baby has Potter's Syndrome a condition where the kidneys never formed during the first few weeks of conception and that without kidneys, the baby is not able to produce amniotic fluid, a crucial process in the development of the lungs. Without this, the baby would not survive to full term or would only live a few hours outside of my womb. Jason and I looked at each other with the most confused look and at least for me, I was thinking, how can we face another huge medical obstacle. Lord knows we have already seen our fair share in the last 5 years. I desperately scramble for a fix, "can't we just put the baby on dialysis until we can get a kidney?", "isn't there a way to force my body to produce the amniotic fluid?" Certainly in this day and age if medical advances and technology, I'm not going to have to bury my baby. All of these were answered with "I am sorry, there is nothing we can do." I lost it, right then and there, with Jason just holding me. At this point we were given all the possible options, termination, inducing early, continuing on until we couldn't take it any more, or trying to go full-term knowing the outcome would still be the same. I asked the question that I feared the most, "Am I at any danger to carry this to full term?" Thankfully, the answer was No. There is no risk to me whatsoever. With all of this still freshly processing, he said let's not make any decisions right now, do another sono in a week, and see how things look. Then decisions will need to be made. At this point, I am 17 weeks, the baby's heartbeat was 156, and looked otherwise, perfectly normal. We leave the doctor's office and head straight over to our church and talk to a priest. Fr. Jim is wonderful, has the perfect thing to say to make you feel comfort, and offered us the cremains garden as a place to bury our baby if we decided that was what we wanted to do. On the way out the door, he stopped us, gave us a statue of Jesus carrying a cross, and said that he felt we needed this in our home as we were carrying a big cross right now.
April 27th: Jason's parents come in town to watch the boys so we could go to the doctor. As I lay on the sono table, I am desperately seeking a miracle. As soon as she puts the conducer on my belly, I can see that things are still the same. At least they weren't any worse. I just wasn't prepared to make any more decisions. The baby looked fine, other than the lack of amniotic fluid and kidneys. It's amazing how it can even survive. I've now crossed into my 18th week. I should have been finding out the next day what we were having and instead we were getting ready to head over to the funeral home to make tentative arrangements. How life can be so weird.
April 28th: We asked my next door neighbor, Tanna (another angel) to watch Brayden for us so that we can head over to Moore Funeral home do gather as much information as possible. After we dropped Jackson off at MDO, we head up there. I think we were both in denial as we just went through the whole process, picked out burial plots, looked at caskets, looked at the headstones we had to choose from, did we want to be all buried together one day or bury the baby by itself. I just couldn't imagine not laying with my child again. So we thought we'd just buy 3 plots, had everything picked out for the baby, and then the sales pitch begins. It's a little like buying a house, and a little like buying a car. As I'm standing there looking at the infant casket, I can feel the baby move. It takes all of my being to not just break down and scream out loud. This is not normal.... people don't bury their babies.... how are we going to pay for it ($7600 for just the baby). Of course, they try to get you to sign off and finance what you've picked out. I said, we'll take the info with us and decide what is best over the next few days. Thankfully, my parents were coming in town the next day and we would have them to talk through all of this with. Boy was I in a mood the rest of the day.
April 29th: I decide to go to bible study and get away from everything for a couple of hours. I could tell when I woke up that morning, I wasn't in the right frame of mind. I am so glad I went, as it helped me to escape this nightmare even for just a moment, and to be surrounded by some great prayerful women who were so encouraging. When I got home, I just cried, and cried, and cried for hours. I could hardly stop to catch my breath. Jason just sat there on the couch holding me and praying for us out loud. It was one of the most beautiful prayers I had heard. Just as I was starting to settle down, my parents arrived. The mere sight of them made me ball all over again. It was as if having them here was going to finally take the pain away. We cried together and then I took them to the church to see the cremains garden and to the funeral home to show them the plots we had picked out. It was more real this time around and I cried several times while walking around the cemetery. This was the beginning of several decisions that needed to be made. I couldn't have done it without my mom here. She was instrumental in helping me to process through all the emotions and helping to gather all the information for Jason and I to go through. At this point, we have decided to cremate the baby and bury it at church. Since there is no way for a permanent marker to be set, we are going to donate a memorial plaque to be placed there in memory of the baby.
April 30th: My mom and I go to the specialist, Dr. Goldaber, a perinatologist to see what he has to say. Again, Lisa B. came to my rescue and watched the boys so I wouldn't have to go by myself. He pretty much said the same thing, the baby has Potter's Syndrome II, which is the only one that is not genetic or hereditary. He also said the baby has a 0% chance of survival, which seemed so severe even though it's the same thing as we heard before. I guess just having a number associated with it was hard.
May 8th: It's been since Tuesday that I've felt the baby move. I realize that I'm going into the weekend and I decide to call my drs office to see if I can get a heartbeat check. They tell me to drink a coke, lay in the bed still for an hour, while she talks to my doctor about what they want to do. At 4:30, I go in for a quick sono. The heart was beating and I was told again that without any fluid, the baby isn't able to move much. This is why I don't feel a lot of movement. So back home I go and wait until my next appt.
May 13th: I go for my regular office visit and see the baby moving and still very much alive in my belly. I call it a "him" since I already have boys, it's easier. I see his hand by his face and his mouth moving as if he's saying, "Hi Momma!" I had tears roll down my cheek as I try to fathom the idea that I'll never get the chance to hear those words. Then, for the first time, his legs were apart. I ask if she can tell the gender. No one up to this point has been able to see. She looks, and looks, and first says that she thinks it might be a girl, but can't say for sure. Then she switches and says she thinks she sees something, boy parts. She keeps looking and now says, I think it's a boy. She even put "It's a boy" on the picture with an arrow pointing... then 5 ????? follow. So, for now I think it's a boy, but I guess that could be wrong. Maybe when I go back on the 27th, they'll see something more defined. After my sono's I go into Dr. Seligman's office. It is kinda weird that I don't go into an exam room. He basically says everything is still the same. I ask him again how the baby is surviving without any amniotic fluid. He tells me that amniotic fluid is for cushion and lung development. The umbilical cord is sustaining everything else. I guess now that I'm out of the "fog" things make more sense. The next day, I fly to Charleston, SC for my sister's wedding. He gives me the ok and off I go.
Thanks for putting up with such a long post. This is my way of journaling and sharing with all of you the details if you choose to read. From the first day (April 21st) Adrienne Vaughan showed up at my door at 5:30 with a meal for our family. For the next three weeks, meals arrived every other day from AECPTA. I can't thank all of you enough for meals, cards, emails, phone calls, blueberry muffins (thanks Lisa V.) and your support. We wouldn't have survived without you.
