Pictures and a countdown

Today was the 35 week ultrasound. The good news is that lil Flacher boy decided to stay cooking while we were at the beach. All the warnings from the doctors and worst case scenarios that were thrown out at us, never came to pass! The not great news is that the left ventricle has increased pretty dramatically up to 30mm now, as I have said before, this doesn't hurt our little guy and it isn't causing any damage, it is just an indicator that the fluid is in fact being blocked significantly and we will need to act on that. However, his head size is back to measuring in the normal range and his weight and heart beat were typical. I did download a few pictures to show everyone. The first one is a zoomed out picture of the opening on the spine. He is facing away from us in this picture and curled into a little ball, which gave us a great view of the spine. The little black slit that the arrow is pointing to is the lesion on his lumbar spine. This is the best picture we have of his lesion so far. Something about this photo is comforting to me, that little black opening isn't scary.

The next picture is a good shot of his little face. I know the ultrasounds are very hard to see what is going on sometimes, so I won't post too many. I have seen so many at this point that I am getting pretty good at seeing through the interference. This next one reminds me of the emperor from Star Wars, like he is gazing out of the darkness of his hood and you can only see his nose and lips, but not his eyes. 

He seems wise to me in this picture. While we are out here worrying about what is going to happen and what life will be like, he is all comfy in there and just practicing puckering his lips and breathing - the important stuff. He isn't worried about life outside of that little emperor hood, he is going to deal with what comes his way and it will be the only life he will know. Today at the appointment we were discussing delivery options and my MFM doctor said he thinks a vaginal delivery would be better at this point, he isn't worried about infection b/c I will have to be on antibiotics during delivery anyways since I had a positive strep B test and that would protect the baby from infection. We don't have to worry about a sac rupturing since the lesion is flat and he thinks if we can avoid a C-section, it could help with my bonding with the little guy quicker, which could prove important for recovery. The real decision will be left until next Tuesday, July 1st when we meet with the neurosurgeon. He can give us more insight into what he thinks will be best, based on his experience. On that day we will most likely schedule whatever procedure we decide on and it will be during the 38th week - which is 3 weeks away!!!! That is what hit me like a charging rhinoceros (we are still in an animal phase at our house). 3 weeks, we are not ready! It seems like someone started a countdown officially today and I have this feeling that there is too much to do and some of it can't be done. I want to spend as much time and uninterrupted playing with both of my boys. I want to give them so much attention right now so they can feel loved and appreciated. I am scared that once the baby comes, he will, by nature of his needs, get all of my attention. Their life will be babysitters and waiting rooms, possibly not sleeping in their own beds for long stretches of time. Don't get me wrong, they will most likely love it, we have such an amazing village helping us raise these kids that they will be on one big field trip and play date constantly, but I worry that they will lose track of their relationship with John and I. I don't want them to think that we are choosing the baby over them and that we have left them to their grandparents because the baby is more important. 3 weeks doesn't seem like enough time to get in enough loving on them to make that impression, especially when life is still going on around us. In these moments, I have this impending doom feeling, that when the baby gets here it will be all chaos and crazy emotions, which sends me into another guilt fog b/c the arrival of a new baby should be so exciting and tiring and joyful. You hunker down as your own new family unit and bond and get to know the newest little squirt, while watching the existing squirts become big and bigger brothers. We will be robbed of this at first and that makes me sad, we don't know how long before the boys can even meet him, let alone when he can come home. What will they think at that point? Will they love their little brother? Will they even want to come home? Will they have enjoyed that dose of life without us and without a new little baby stealing all the attention, that they will be unhappy to come back to us? Not sure I could handle that. I don't want any inkling of resentment towards this little guy from his brothers or even from myself and I am not 100% positive that that is possible. I have to remember that it is the spina bifida to hate and to resent, not the baby. Keep them separate!!! This baby will help both boys be more compassionate and accepting, right? He will help them see that everyone is different, but that isn't something to fear or ignore or to avoid, differences are for us to embrace and to learn about. He will teach them that. He will also teach them that they aren't the center of the universe and sometimes other's needs will come before theirs. That can be a hard lesson to learn at their age, but ultimately it is a positive one....right?

Next appointment is a non-stress test on Thursday!

Non-stress Test

Today was a new kind of appointment, we did what was called a non-stress test on the baby. They hooked me up to a monitor (much like when you are in labor) and it measured the baby's heart rate over a period of 20 minutes while I clicked a clicker every time I felt him move (very scientific if you ask me). Regina, the lady who runs the non-stress test, explained that they want to make sure that when the baby has a bunch of movements his heart rate increases at a normal rate and then decreases back down to resting at a normal rate. This is to ensure his oxygen levels are good. Luckily, he passed and it was nice to have an appointment that didn't result in any disappointment. This will be what our Thursday appointments are from here on out and Mondays will be ultrasounds to measure his little parts. At 36 weeks, we will do another growth ultrasound which will hopefully show that is he is still growing and getting bigger, otherwise we would have to deliver sooner rather than later. No appointments next week, since I will be on vacation with the Flachogers crew. When we get back we have our neuro appointment with Dr. Vogel and I have been collecting all kinds of questions for that one, so looking forward to having a little more information from a true SB specialist soon.

Yell it from the rooftops

Today's appointment was relatively low key. The ventricles are both 20 mm now, which is the smallest decrease we really have seen so far (also the least amount of time between measuring, but I am blocking that out for the moment). Everything else is measuring normal - well as normal as spina bifida can measure. The thing that most struck me today was the entirety of this pregnancy. I have said many times, that I enjoy being pregnant (obvs since we are about to have 3 kids under the age of 4), but I feel people are kinder to me and much more social. Maybe I am not approachable in my everyday non-pregnant life - I guess it could be the blueberries in my hair or the snot on my sleeves from chasing around kids all day - but normally random people on the street don't take an extra notice to smile or say hi. However, when I am pregnant, I feel like people always smile at me or make a nice well-meaning comment. Even if it isn't about the baby or the pregnancy, just a hello or a joke about the snot on my sleeve, people seem much nicer to the rounder version of me. Which leads me to an awkward situation. It seems taken for granted that babies will be healthy. When people ask if it is a boy or a girl and I always tell them how I enjoy not knowing, when it is possible, because I like how special it makes the birth day and the whole birthing experience. To this, many people answer "That is true and it doesn't really matter as long as it's healthy". It's like a hot knife to my gut. Our baby isn't healthy, does this mean we won't love him as much? Does this mean he isn't wanted as much as his brothers were? Does it make us less excited to meet his sweet little chubby face in a few short weeks because he isn't the perfect picture of a healthy baby? It ranks up there with "Got another little soccer player cooking in there" or "Another healthy little boy to run around after". I know that these people are completely well-meaning and have no idea how much those harmless little comments cut right through me and take my breath away, but I can't help but wonder if I should tell them at that moment. He most likely won't be able to play soccer or to run around with other little boys. I want people to know about our son's diagnosis, I want them to know that this can happen and that it will be okay. Health shouldn't be a qualifier of if we will accept our babies or not. Health is not something I will ever again take for granted in myself or those that I love. I will not assume that health is status quo and all that matters, I will now cherish it for the gift and the blessing that it is. I want to tell everyone around us about his spina bifida, because when we meet our son, it is going to be there, glaringly obvious, that he is not healthy and I don't want to feel like I hoodwinked people during the pregnancy so they wouldn't feel sorry for him or for us. I want them to know now what is happening, so they don't feel pity for him once he arrives. He is going to be a fighter (he will need to be with two older brothers and cousins that won't give him any GD pity and will pick on him and fight with him like the little boy that he is). I just don't know where the line is on who you tell and when you tell them. The passing stranger that I will never see again? Probably doesn't care at all. The acquaintance that lives down the street with two little kids around the same age who we see on walks regularly? They will probably figure it out, do I tell them now so they aren't wondering later what happened? Do I give them a head's up so we don't have the same awkward run in and conversation about chasing more kids around in the future? The friend of a friend whom I am not sure if they know through the grapevine and now it's like an elephant in the room b/c they don't want to ask and I don't want to give them more information than they really care to know about us? I really want to yell it from the rooftops or the mountains or the playgrounds so it's out there for everyone to know and to see and to be comfortable with. I don't want people dancing around the topic out of fear or uncomfortableness. I want to make it an open conversation so we can all learn and be ready to help out this little dude, however he may need it, with no pity of fear of his diagnosis. I want people to know that even if babies aren't 'healthy' they are still our babies. It's the spina bifida that is awful and we hate, not the baby.

Next appointment Thursday June 12th - then beach vacation!!!

Latest Ultrasound Info - 32 weeks

We had another ultrasound today. As I have said before, I don't like that room, it will always bring me back to Diagnosis day! The ventricles have once again increased, to 18mm (left one) and 21mm (right one). Don't love this news, but it isn't concerning of anything with the baby. There is no damage occurring from this since the pressure isn't building and stressing out the brain as it would in someone older. We were told that his head is small though, in the 3rd percentile, which is odd for spina bifida, but really it is hard to measure a baby's head who has spina bifida because the U/S machine has a pre-set shape it uses to measure head circumference - a circle - but babies with sb have an elongated head more like an oval or ellipsis, which makes it difficult to get an actual reading when you only have a circle to try to fit it into. Even though I know this and the logical side of me says pay no attention to the numbers b/c they mean nothing at this point in time, I find myself obsessing over what it could mean. If his head is too small, the pressure will build on his brain easier b/c where will everything move to if the ventricles continue to swell? Why do logic and reason seem to go out the window when your child's health is on the line?

He is also measuring small overall, the 26th percentile for overall weight. I know that John and I make small babies - 6 lbs 9 oz and 5lb 11oz respectively at full term - but hearing that he is small made me nervous. Will he be too weak for surgery? Is he malnourished? They even did an extra reading with the doppler to make sure the blood flow through the placenta is strong - which it was and it looked fine - but that stupid little emotional devil on my shoulder keeps yelling louder than the logical guy on the other shoulder.

Sometimes the emotional guy helps out though. The baby's lesion is flat, there is no sac sticking out from his back that has the nerves all bundled in it, his nerves are still flat in his back, but just open to the fluid. The logical side of me knows this could mean nothing, the nerve damage could still be pretty extensive, but the emotional side of me says, if the nerves are flat maybe they are safe, maybe the amniotic fluid can't get to them and he will have minimal nerve damage. No one knows either way what the chances are, but I can convince myself on any given day that it is good...or bad!

The other decision looming is how to deliver. This could be decided for us based on various things, but right now it seems like it is still up in the air. There is no good evidence, that I can find, about one being better than the other, as far as vaginal vs. C-section for babies with sb. Some people seem to think that vaginal is better since it will get the baby's cortisol level up and make him stronger for the surgery that he will have to go though very soon after birth, not to mention the normal benefits of vaginal birth. But I have also read that a C-section could save some 'level' of damage on the nerves. There is no definite answer and both have pros and cons. Currently I am leaning toward C-section, but that scares me b/c the recovery is harder (with two little ones to already be taking care of) and I won't be discharged until days after so I won't be able to get to the NICU to see our little man for days...I want to breastfeed him, will that make that harder? With all the meds he will be on and the stress he will be under, it is so important for him to get good nutrients. Luckily, we have our meeting with our neurosurgeon scheduled for July 1st. Dr. Vogel. He will be the one who will have the most answers of anyone we have met yet. He is a sb expert and will be in charge of little guy's care for most of his life. Hopefully he will have some answers or at least a better idea of some guidance for us and hopefully he will be ready to deal with me and my logical AND emotional side.

Next appointment, Monday June 9th.

Even a millimeter can break your heart

We had a doctor's appointment today (one of many in the upcoming weeks). The appointments have been spaced by 2 weeks and this is only the second 'regular' appointment so I am still learning what to expect and how to handle all the information. The challenging part is that in between appointments, although I am constantly thinking about this little guy (who seems to be doing non-stop flips in my bladder region!) and all the challenges he may face, I am busy enough with life that spina bifida isn't as doom and gloom as it once seemed in my eyes. Our life has gone on since Diagnosis day and with some education and information on SB, the outlook isn't as terrifying as we had once viewed it, but when appointment time comes, it is back to the reality that this baby's spine is not formed correctly and he could have some major health complications that he has to deal with. It is a chilling and emotional alarm clock to wake me back up to reality. Today on the ultrasound, his ventricles had increased to 19 and 16 mm, up from 11 and 14 mm. That is so small and minute that it is mind boggling how much it shook me. I guess, I was in more denial than I had thought. I talk a big game when discussing our little guy with everyone, like I am fine and I am calm and feel good about what the prognosis is and will be able to deal with whatever we need to, but today when those little millimeters had increased, I felt myself losing it. I was still hanging onto some type of ridiculous hope that everything was fine and his symptoms were going to be minimal and surgeries, like shunts, might not be necessary. For some reason though, with the increase in those darn ventricles, it was like my reality check that this is in fact happening and it might not be a best case scenario for him/us. Which leads me to even more emotions. I feel guilt for being scared of the future. This isn't about me, it is about our darling little boy and HIS life and HIS challenges. The fact that it scares me and I am fearful of how to parent a baby that will need me to be more than I have ever had to be, makes me feel selfish. The number of times I have used the pronoun I in this post is worrisome to me. A good parent does not make their children's problems about themselves. They put their kids first without a thought....Can I do that correctly? I can't even fully accept yet what his diagnosis might be. I am being unrealistically optimistic and that probably isn't a good start to being the mom he needs.

One of the wonderful moms in a spina bifida parent group had a great quote. 'Having a child with disabilities does not require a strong parent, it creates one.' I like that a lot and am hoping that it is true.

Another little anecdote that I have fixated onto is a metaphor about grieving: Having a baby with special needs is like planning a vacation. You have been planning a vacation to Italy. You bought books, read up on all the hot spots and cool things to do. You may have even already been to Italy and loved it so much that you are feeling ready and excited to expand on your last trip. You are very prepared and excited with images in your head of how much fun you will have and the memories you will make. You get on the plane, but it takes you to Holland. You didn't plan for this, you are now stuck in Holland and there is nothing you can do. You aren't prepared and you are wishing you had been able to go to Italy. You are hearing from your friends and those around you how much fun they had or are having in Italy. They are posting pictures of being in Italy and are having the time of their life doing strictly Italian things that you can't do or find in Holland. You are happy for them, but you are sad to not be in Italy. The problem is that Holland is also beautiful, but in ways you don't know about because you weren't prepared. It is ok to be sad about missing Italy, but if you spend too much time grieving the missed trip, you won't be able to see the beauty in Holland. Don't miss what's around you b/c you are held up on what you had in mind. Holland will have it's own beauty and memories that you can't even imagine.

Starting out

Since we found out that baby boy #3 has an open neural tube defect, we have been dealing with many emotions. Finding an outlet for these emotions has been challenging, so I started writing
many of my feelings down. This helped some, but the wonderful group of moms of kids with Spina Bifida that I joined encouraged me to blog about it. This will help communicate my thoughts on everything with those who would like to know as well as keep those close to us in the loop with updates. So let's see how this goes....

We found out on March 12th that our little guy has spina bifida. This was easily the worst day of my life, I think I will forever remember the details of that day pretty vividly and I now feel that my life can be broken into two parts, before Diagnosis Day and after. It has been a bit of a whirlwind since then, our moments have ranged from feeling hopeless despair like it is all a bad dream to hopeful and inspirational from those around us and those that I have met. The major cause of pain, for me, has been that this is my fault. I have had countless pep talks from doctors and other moms that this isn't my fault and these things happen, but there is nothing that anyone can say that will change my mind from the fact that this is my fault. We weren't trying to get pregnant, I was not taking the pre-natal vitamins which have the necessary folic acid in them that can help reduce the likelihood of Spina Bifida.  I was very sick at the beginning and couldn't eat for days at a time, I had to go on medicine to be able to even drink water...could this have caused it? I know spina bifida is determined very early in the pregnancy (first 3 or 4 weeks), I didn't even know I was pregnant then, could I have done something during that time to cause this? Even though I have come across those that took the vitamins, planned for pregnancy, did it all 'by the book' and still had babies with spina bifida, I will always have this hanging over me that I did something. It is my job to grow a healthy baby and I was unable to do this for my son this time.

After finding out at our 20 week ultrasound about the baby's diagnosis, we have been run through many more test (MRI's, Fetal Echo, Ultrasound, etc.) and we now know that the lesion (the opening in the spinal cord) starts around L3/L4 (the 3rd or 4th lumbar vertebrate) and goes all the way down the spine. The frustrating part about the pregnancy phase of this diagnosis, is there are no answers for what any of this means for baby boy. The damage to the nerves from the amniotic fluid is completely random and affects each individual differently. So he could be paralyzed, or he may walk. He could have no feeling from hips down or maybe no feeling in just his feet. His brain could be affected by the shifting down the spinal cord (Chiari II) and need a shunt or it could have no symptoms. He could have no bowel/bladder control. I have heard the phrase 'wait and see' more times than I can count. I have endless questions that no one can seem to answer and it is hard to deal with that. What will our little guy go through? How can we best be prepared to help him and give him the best chance at achieving all he wants to achieve?

As I have explored the spina bifida community, I have been amazed by the strength and tenacity of so many of the parents and caregivers of these young little fighters. It seems it takes a special kind of parent to have a child with special needs. You must learn to fight for your kiddo and be their advocate. You have to be proactive, but knowledgeable. Patient, but persistent. I find myself doubting that I have these qualities in me. My little guy deserves someone to fight for what is best for him and to learn everything they can about what he is going through and might face in the future. How do I find this strength? How do I channel an inner warrior mom that can help my little guy? These are some of the thoughts that keep me up at night. However, in the same stream of consciousness, I remind myself that this is spina bifida, it is not cancer, it is not terminal (the vast majority of the time). He will be expected to have a long life given proper medical care. He will get to have a life and be loved by an amazing family. Although he will have different struggles than our other two dudes, he will still be a little boy. He is a child that happens to have spina bifida, he is not spina bifida. I don't like the word disability for many reasons....he will have his own Flach-ability!!