The Hardest Thing I’ve Ever Gone Through

Some knew, others didn’t. We didn’t feel comfortable announcing to ‘the world’ knowing it would come with all these congratulations, but in the back of our minds not knowing if we would even make it this far. We just wanted those who knew to understand it was a very serious and scary situation for us, and still is. Yes, life is something to celebrate, but this journey we have been on has been very scary and all a big unknown, not only to us, but to the doctors as well. Let’s take this back to the day I found out I was pregnant, end of March I literally lost my job the same day (that’s a whole different story in itself) I was very hesitant to be excited even when that first test came back positive, as we had been trying for about a year. I didn’t really have a gut feeling that something was necessarily wrong but, since having Brooklyn I have just become more aware of all that goes on with trying to conceive and even after. Infertility, miscarriage, stillborn birth, ectopic pregnancy, molar pregnancy, etc.. I guess I’ve become so paranoid about certain things since having my first child that I kept telling Rey to just wait til our first appointment to make sure things are okay. First appointment comes and although I still didn’t feel something was necessarily wrong as I entered the doctors office, I couldn’t be all giddy and happy until I saw the baby and heartbeat. Right away our doctor assured us that there was in fact a baby and heartbeat, but she wanted to do further scans, not really saying why. Right then I knew, this wasn’t something we did in my first pregnancy so something must be wrong. I went to a different room right there in the office to do a vaginal ultrasound so they could get a better picture. We were told that the placenta was abnormally large for how far along I was and that there was some sort of membrane she was seeing that would indicate possible twins but that there was only 1 baby and so we were going to be sent to a specialist to get further knowledge on what could be going on. Luckily we got in the next day to see the specialist. We did more scans the next day and then had our consult with the specialist, what was said is sort of a blur. Although she didn’t shoot our hopes down completely, all I remember was we left with still really no answers. We were told it could multiple things going on, some variation of a molar pregnancy was talked about, either a partial molar pregnancy or because of the membrane like thing they were seeing on ultrasound she wondered if at any point this was a twin pregnancy turned into a twin molar pregnancy due to the mass they were seeing on the placenta, but because she wasn’t 100% sure, next thing you know we are being transferred to see an oncologist because molar pregnancies can develop into cancer. This oncologist was suppose to be someone who supposedly had more knowledge on what may be going on. The following week I was able to get in to see the oncologist, with just looking over scans from the previous doctor and blood work that they ordered she wrote it off right away that it was a partial molar pregnancy and that unfortunately I would have to have a D&C. For those that aren’t familiar with molar pregnancy (I’m no expert myself but have read a lot on it), a molar pregnancy is an abnormality of the placenta, caused by a problem when the egg and sperm join together at fertilization and to my knowledge there are 2 types’. Complete mole and a partial mole.  Complete molar pregnancies occur when a sperm fertilizes an empty egg, it will have only placental parts (there is no baby). Because the egg is empty, no baby is formed. Unfortunately, an ultrasound will show that there is no fetus, only a placenta. Partial Mole occurs when 2 sperm fertilize one egg, the mass contains both the abnormal cells and an embryo that has severe birth defects due to having triple the chromosomes. In this case, the fetus will stop growing at some point or be overcome by the growing abnormal mass rather quickly. Of all the reading I have done, the only time there is ever a viable baby from this type of pregnancy is when it is a twin pregnancy. It is a 1-22,000 to 1-100,000 chance of a twin molar pregnancy to occur, but how was I suppose to know if it was that or a partial mole? So I questioned the oncologist about finding out if there was a way to test if the baby that was growing inside had triple the chromosomes or was a baby with the normal amount of chromosomes. She told us there was no testing we could do and that our only option was a D&C. She informed me that I could call my regular OB and schedule my D&C with her since I may be more comfortable with her. We left devastated. We had been trying to get pregnant for over a year. And now I had to call and schedule a D&C and still be pregnant until we were able to get it done. At this point I was over it, I felt like it was basically a wasted pregnancy and hoped I could get in right away to just get it done and over with because this was such a wanted pregnancy I was very upset with the whole situation. So the next day I try calling and leaving messages for my regular OB to schedule this procedure we needed to have done. We played a bit of phone tag but I was finally able to schedule an appointment for the following week. After making my appointment I’m just like thinking to myself uhh how do I even prepare for this type of procedure so I call and ask if at this appointment the D&C would be performed so that Rey could be there with me and the medical assistant told me it would not, that if that was the case she would definitely consult with me first and then we would schedule that afterwards. So I’m thinking great, now I have to be pregnant for even longer with this ‘wasted’ pregnancy. I feel horrible now that I at one point thought about this pregnancy in that way, but how else are you suppose to feel when an oncologist tells you that and basically gives you no other options other than a D&C? A doctor who was suppose to be the most knowledgeable one we saw. Well my appointment with my regular OB finally arrived and I had like this hint of hope in the back of my head like something positive was going to come out of this, I didn’t know what, but I was so in my head about what she was gonna say and why I couldn’t just schedule this procedure and get it done and over with. Well she comes in and wants to do another ultrasound to see if there is still a heartbeat and if the baby was growing on track with how far along I was. Sure enough it was and there was a heartbeat. So what did this mean? Well to my surprise she basically told me I had OPTIONS. That this was indeed either a partial molar pregnancy or a twin molar pregnancy, but since she knew that this was a wanted pregnancy I MAY be able to carry this out if it was a viable baby. So long story short she tells us the high risk OB said they would follow me if I wanted to carry on the pregnancy. I have been followed very closely every week for a period of time with blood work and ultrasounds due to all the complications that can occur to myself and the baby, and then switched to every 2 weeks at around 17 weeks along due to blood work and scans showing stability with the pregnancy. I was hospitalized most of August at 22 weeks and 5 days due to some bleeding they wanted to monitor, everything else is still looking fine as far as the ultrasounds and blood work pertaining to the molar aspect of my pregnancy. Now this suspected partial mole is the least of our worries, we are hitting more bumps in the road and these ones are pertaining to the baby’s brain. September 3rd at my ultrasound they noticed the baby’s ventricles in the brain were dilated more than normal, and that the shape was a little off and there was some type of lining my doctor assumed may be blood. They diagnosed her with bilateral ventriculomegaly. Same day I had an amniocentesis performed, recommended by my doctor that I had been putting off, to rule out if there’s anything on there that would have been the reason why this was happening. Next, we immediately got the ball rolling to get an MRI scheduled, schedule an appointment with a pediatric neurosurgeon and then an appointment with the neonatologist at the NICU. I have since had the MRI, had both of my visits and have been in a very emotional state. Basically the neurosurgeon said that most likely between 24-26 weeks an ‘event’ happened (hypoxic ischemic injury) where the baby wasn’t getting enough oxygen to the brain at one point which caused a grade 4 hemorrhage on the brain. She said the baby’s brain hasn’t been able to develop properly because of the early damage to it. She also says she suspects the baby’s brain function for most of the brain probably isn’t going to be very good. She said the part that’s damaged is the area that involves executive functioning such as making decisions, personality, moving properly, hearing, eyesight.. She said the part that looks undamaged is the brain stem, which controls heart beat, blood pressure, breathing, and the sucking function might even work properly. She said she suspects the baby is not going to be very functional, that she won’t go to school, and probably going to have very severe cerebral palsy and a lot of delay. She said there’s enough loss of brain tissue that she suspects she’s not going to be a normal kid. She said she may take a bottle, may be able to breath on her own and may even cry but that babies like this don’t live past a year. She said when she’s born she won’t really look abnormal, her head may be small but she may still take a bottle and seem fine.. But she also said she can’t definitely say that’s exactly what’s going to happen. We know that this is the worst possible thing that may happen to her, and I'm not upset that the doctor gave us this information rather than trying to paint a pretty picture for us. BUT, we truly don’t know what the outcome will be until the baby is here, which gives me the tiniest bit of hope that she may be better than what the neurosurgeon suspects, but I'm definitely not naive to all the possibilities. This whole pregnancy has been a big unknown, whether I would make it to viability, whether the molar aspect would negatively affect this pregnancy or the baby, and now whether this baby is going to survive and what she will be like, but I wouldn’t change what I have gone through for anything, knowing all the complications that MAY or MAY NOT happen, and just holding onto hope that all of the worse case scenarios won’t be what we go through because so far we have been beating the odds.. I have fought so much for this little one and all I can do now is hope. It’s all been out of my hands and I have struggled not having any control over what will happen in the end. And if I don’t go into labor early, we still have about 2 months to go. 2 more months of waiting for the unknown.  I still don’t really know how to deal with all my thoughts and emotions. All I know for sure is this little one has always been loved and always will be loved. This has been the absolute hardest thing I have ever experienced in my life, and it’s still not over. I think now with there not being any intervention we can do to 'fix' things, I'm finally ready to share our story. I have since found a facebook group for those going through the many variations of ventriculomegaly and what it can cause, and it has given me hope. So many of these families are told the worst possible scenario/diagnosis, which I don't disagree with, I would rather be prepared for the worst but hoping for the best, but SO many of them when their baby is finally here what the doctor originally told them is not what ends up happening to their little one. I'm not a very religious person but I believe in the power of prayer and am asking anyone reading this to just keep us in your thoughts and prayers because at this point that is all we can do. Thank you for reading