- I am so thankful for social media right now. I have been able to join amazing support groups, virtually "meet" people from all over the place and develop strong relationships with these amazing woman. I have even been able to physically meet a few local Trisomy 18 moms who have given me amazing guidance and support throughout this journey. Most have lost their beautiful babies, but one is still fighting at the hospital and will be 7 weeks old tomorrow!
- Social media would never have allowed me to share our story the way we have. Every "like" we see on the Micah's Fight Facebook Page (www.facebook.com/micahsfight) brings a smile to our face. I can't believe in just a week we are well over 250 people rooting for Micah. I love seeing familiar faces, as well as names I've never seen before. I pray everyday that Micah's story is touching lives and inspiring others. I pray we have opportunities to do this on larger scales and allow Micah's story to inspire many more. The stories people share with us really help us move forward with a smile :)
- Earlier last week was scary- I was having a hard time standing or doing really anything without losing my breath and becoming exhausted. It only lasted for a few days, but was absolutely terrifying. I felt like myself again on Thursday, but I thought that was the new normal and it was very scary.
- I don't know one person that didn't have any discomforts during pregnancy or birth. The thing that helps going through the aches, pains, lack of sleep, frequent bathroom trips, trouble breathing, weight gain, and other body changes is knowing that you get your "consolation prize" or reward for all the discomforts- you have a child. It's so much harder going through all this knowing the chance we will leave the hospital empty-handed is much greater than the possibility of going home with a thriving Micah. I pray we are able to continue this pregnancy without further complications, and that we will at least be able to meet Micah alive, and introduce him to others.
- I've been going to a few baby showers lately for second babies. Before I knew of Micah's diagnosis, I would have never expected a baby shower. Justin and Micah would be just under two years apart, and due around the same time of the year. We have kept everything from Justin in storage so other than a few things- we really have the majority of what we would have needed. Now that I'm attending these showers, it makes me so sad we won't have our own. Not because I didn't want one- but because the circumstances surrounding our situation. I've mentioned that we haven't purchased anything for Micah and are not preparing a nursery. I can't imagine losing a child, but I'd imagine that having a bunch of "stuff" and a full nursery for a baby that will never wear those clothes, or sleep in that nursery, or need those diapers, would be way too much for me to handle. The only things I can imagine buying for this pregnancy Micah are all sentimental and necessary things. We won't be stocking up on diapers- but I'd like to find a special outfit to photograph Micah in that Matt and I can pick out together- no idea where they even sell Preemie outfits? I want to find a cute "Big Brother" outfit for Justin that he will hopefully be able to meet Micah in. Maybe personalized blankets or other things that I can remember him by. Things that if he didn't make it, I could keep a beautiful memory box for him. Something I could turn to when I needed to feel close to him when he was physically gone. A memory book of some sort with quotes or nice things people have said to us... I don't know. Just things to celebrate Micah. I'm rambling again.
- With the last post above- I want to be very clear about something. My situation will NEVER take away the joy I feel for my loved ones with their healthy pregnancies and newborns. When I go to a baby shower- I do not feel any less joy for you because of what's going on with me. In fact, this pregnancy has really shown me just how amazing and miraculous the whole pregnancy process is. I know those who I see frequently know this- but please don't hide your pregnancy or anything from me.
- Please don't be afraid to ever ask about Micah (by name or otherwise). You will never offend us or make us sad. You can't say the wrong thing. Silence from those we care about is honestly the hardest thing we've had to deal with. It makes us feel like you don't care. Not everyone is good with words. I never know what to say. As long as you are coming from a good place- just know that the only wrong thing to say is nothing. If you have a question- ask it. We enjoy talking about Micah. We hate feeling like the elephant in the room that everyone avoids.
- We have been getting so many thoughtful cards, letters, and gifts. We can't thank everyone enough. I can't believe how thoughtful some of our friends are. I've wanted to post pictures of everything we've been receiving, but I've been afraid of how it may make us appear so I haven't. I just want to show how appreciative we are.
- It's not all sunshine and rainbows. I know that Matt and I generally appear to be happy and positive. We strive to be like this. I try to stay upbeat as I'm terrified of falling into a depression or not being the best mom and wife I can. With that said, this entire situation sucks. We are devastated every day. We fall more in love with Micah everyday and it makes it so much harder to imagine the inevitable. We don't know how our journey will end. That's terrifying. We don't know if we will fall in the majority who delivers a stillborn baby either pre-term, or at the end of our 40 weeks, or the small minority who bring their babies home from the hospital. It feels like we have so much time left in our pregnancy, but we also know that July is just around the corner and each day could be our last. We want to spend as much time with Micah as we can- but the only thing that scares us more than how we would handle losing a child- is how we would handle having a surviving, very sick, very special needs child. I can say this now as I've never laid eyes on Micah, but it honestly terrifies us. I just want to meet Micah. I want to love him, and hold him, and kiss him, and I want Matt to feel him move around like I am blessed enough to everyday.
- Shocking- my "quick thoughts" weren't exactly quick, but I do feel better getting a lot of thoughts "onto paper" instead of running circles in my head.
- We have our next appointment this Wednesday, April 9. This appointment will be with our high-risk doctor where we will check to see how Micah is doing. I'm hoping for some more beautiful images- especially the 3D ones :) T18 babies are generally born very small (only 4-5lbs full term) as their growth is very slow. At our last visit four weeks ago, Micah was measuring on track still. We are praying he is still growing at the right rate. The next major worry I have is that at my other appointment two weeks ago, my uterus was measuring three weeks ahead. That's a lot. I'm really worried about the amount of amniotic fluid there is. There are many complications that can be caused by high levels of amniotic fluid- both for me and for the baby. T18 pregnancies are notorious for having very high levels of amniotic fluid. Although it would be a welcome miracle, pray that my measuring three weeks ahead is actually just Micah beating the odds and being a big baby, and not because of extra amniotic fluid.
I have so many random thoughts running through my mind lately. I thought that doing a bunch of bulleted points would be easiest for me to write- and for you to read :)
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"Micah's Fight"Since we "went public" with our journey a couple months ago, we have had such an amazing outpouring of support. We have had many people reach out to us who are otherwise strangers. The support and prayers help us carry ourselves to the next day and assist us in putting one foot in front of the other. We couldn't go through this along. With that said, I wanted a better, more efficient and quick way to be able to update those who would like to follow our journey and gives us another outlet to share Micah's story. I decided to create a Facebook page and Twitter account. We all know that even getting this far, that Micah is a fighter. Please help us share our journey and as a previous post says, "give this pregnancy a purpose" by liking our Facebook page and sharing with others who may be interested in following our story. You can follow us on Facebook by liking Micah's Fight. (www.facebook.com/MicahsFight). The page will have quick updates or thoughts in between blog posts. I will of course continue to write this blog as it is incredibly cathartic and I've had such great feedback- thank you. Although I have never used Twitter- it looks like I've found a way to link Facebook and Twitter so that if the bird is your preferred social network, you can still follow along. @MicahsFight (www.twitter.com/MicahsFight). Thank you again for all of your continued support, gifts, cards, calls, etc. We couldn't do this without all of you. Even those who just follow along silently- it means so much to know that we have people out there supporting us. Dr. AppointmentThursday morning was our regular check-up at the OB. These appointments are mostly for checking my weight, blood pressure, and other vitals. We ask any questions we have, and the doctor checks for the heartbeat. They are much different than the appointments at the specialist where we are there much longer and the focus is on Micah. We get an ultrasound and his vitals are measured.
Our OB is very close to our house so I bring Justin as it's typically a quick appointment. My doctor advised that Matt make it a priority to attend every appointment since we could learn at any time that his heart has stopped. Our appointments at the specialist are much longer and it's best we find a sitter for Justin. The way we have it worked out now, we visit each office every four weeks for now. Eventually my OB appointments will switch to every two weeks, and then every week. The way we have it now, we will have an appointment every two weeks and alternate between offices. This is very manageable and I don't feel like I'm always in the office, or always waiting for the next appointment. We are so lucky to have Matt's base office being so close to home. It allows him to come to our appointments without spending much time away from work. With his iPhone- he's never really NOT working anyway. This new position Matt was offered six months ago was such a blessing as it allows more flexibility for our current situation than the other would have allowed. Matt headed into work and then met Justin and I at the office at 9am. We were seen right away- and everything with me looked great. We also heard Micah's heart rate immediately which was a nice change from when he liked to hide from the doppler and give his parents gray hair. We also heard him moving around on the doppler. It sounded like someone tapping on a microphone. After he moved around for a bit, his heart rate went up which is what it's supposed to do. If we had never had an ultrasound we wouldn't have known anything was wrong with him. Matt and I are very thankful that we did learn so early, so we can spend this time being thankful for each day we have with him knowing it could be the last day. Another part of the appointment is where they measure your fundal height. This is basically measuring the height of the uterus from outside of the body. Your uterus grows along with the baby and the fundal height measurement gives a pretty accurate assessment of the growth of the baby without an ultrasound. The doctor decided to measure my fundal height since my uterus seems visibly higher on the outside than it should at this point in my pregnancy. Sure enough, I am measuring three weeks ahead. This is a pretty significant amount and couple be explained by only one of two things. One- the baby is measuring three weeks ahead, or two- I have a high level of amniotic fluid. There are a few things we know about Trisomy 18 that come into play here. Of course there are always exceptions, but generally, babies that survive to full term are very small and weigh typically only four to five pounds. High levels of amniotic fluid are very common with T18 and other genetic disorders. My (non-medical) understanding of complications with high levels of amniotic fluid are that the baby is not recycling the fluid as quickly as it should. Additionally, as pregnancy progresses it becomes extremely uncomfortable and painful for the mother and can trick her body into thinking she is further along than she is. This could lead to preterm labor and puts many mothers on bed rest as it can lead to complications for the mother's health as well. Right now, my blood pressure is still great so hopefully it will stay that way and I will continue to stay healthy. Until we have an ultrasound we won't know the reason for my belly measuring so far ahead. Until I have definite answers, I try not to let myself stress out too much. I like to do a bit of research on my own, but know that stress can only harm myself and my baby. There are an indefinite number of things I can allow myself to stress about with this. I refuse to let what can potentially be unnecessary worry harm myself of my baby- both physically and emotionally. We have another appointment in two weeks where we will have another ultrasound and learn how Micah is doing. We'll also learn what is causing my belly to measure so far ahead. Lastly, because of my scary trip to Labor and Delivery a couple weeks ago where I was having regular contractions every two to three minutes, my doctor requested that my cervical length be measured by ultrasound to see if I am currently at risk for preterm labor. Prayers that everything goes as smoothly as it can, and that there is a miracle and Micah is measuring big and it's not excessive amount of amniotic fluid. I apologize to all of those who checked in with me and were worried because it had been so long since I posted an update. The reason why I hadn't posted anything is because it's been peacefully uneventful! I think for the first time in months, we have actually just been living our normal lives (with this pregnant belly) the way we would with any pregnancy. It's been nice to have things be uneventful for a little while. Since I really only started this blog as a way to get my feelings out and then as a way to share our story with everyone- I hadn't had to put thought into what to write on here. Whenever I had something on my mind that I needed to "talk about"- I came to the blog :) With that said... by the end of this post I will no longer be referring to him as "the baby", or "Baby Boy K2", or whatever I usually call him... since this is the longest we've gone without wanting to change it- I THINK we finally have a name for our baby. I think choosing a name for any baby is hard. Both parents have to agree on the name. So many names get ruled out because we know too many *insert name here*; or oh I knew a _____ in high school/college and they were _____. When we chose the name Justin- it wasn't a name either of us fell in love with- it was the first name that both of us actually liked and didn't have a negative thing to say about it. Our last name can be tricky, and we had already decided on the middle name, "Dennis" after Matt's dad. Justin simply fit and now I couldn't imagine calling him by any other name. Matt thought that JD sounded like a great nickname for when he's playing high school baseball ;) When we learned this baby was a boy, we started trying to think of a name. Like we did with Justin, we chose the middle name first. We decided that there were two names we would chose from based on what sounded better with the first name we liked. Matt's Uncle Mike passed away when Matt was eleven, and I've only heard great stories about him. We added Michael as a possible middle name. Matt's middle name is John and it is a family name as well- his Grandpa John passed away a few years ago. We knew we wanted to honor the names by choosing either Michael or John as middle names. Choosing a first name for this baby was so difficult. We had so many "rules". I realized that whereas most children grow into their name and give their name an identity- this baby's identity will likely be defined by his name. I hope and pray that if his life does not- that his legacy will live on. There is a chance that his name is all that most will know him by. Without sounding hopeless (because we are not)- there is also a chance that one of the only legal documents bearing his name will be a death certificate. I do understand how morbid and upsetting that is to read. It has been very upsetting for me to think about. This baby needed more than just the first name that Matt and I were impartial toward. When deciding on his name, as I mentioned earlier, there were a list of "rules" the name had to fit.
We went through two other names before deciding on this name. It seems like the third time's a charm and this name is holding strong. We first liked the name David Michael. Many reasons for choosing that name- but it ultimately came down to me not feeling connected to the name David and it seeming too mature for this little baby. It came down to a preference thing. Next was Daniel John. I thought of calling him Danny. We loved this name for many reasons, but it was ultimately too popular for us as we started thinking of all the Dans and Dani/Dannys we knew. We went back to the drawing board and both made a list of names we liked that fit our "rules". I continued going back to one name time after time. This name fit all the "rules" we had for it. I felt an immediate connection to the name. This names honors both Uncle Mike and Grandpa. This brings me to tears typing it- but it's a sad but true fact that I may be the only one to carry this baby while he is alive. I am so blessed to be the one to carry our baby boy, but it's heart breaking I may be the only one. This name allows Matt to have a connection that I won't. He will also have the same middle name and initials as his dad. I decided to read a little about this name in the bible and the verse I saw really solidified it for me. Religion aside- Matt and I have always wanted to raise our children to be good, kind, just, moral people. I think it's all that any parent hopes of their children. As I mentioned earlier- when Matt and I made the decision not to terminate our baby's life we chose to walk humbly with God. This perfect, precious, loved baby boy I am carrying is Micah John. Every day I remind myself to live the way Micah told Jerusalem in the bible... act justly, love mercy, and walk humbly with God.
The weather was gorgeous earlier this week, and Justin and I were finally able to get outside and be nice and active :) One night after dinner, Matt and I decided to go on a long walk through the trails in our neighborhood with Justin and Roxie (our dog). I felt a little funny during the walk- getting some pains in my abdomen, but I didn't think too much of it. By Wednesday, they were much worse and more frequent. Typical contraction feeling- tightness and pressure- sometimes hard to talk through. I tried to ignore them and when Justin went down for a nap, I knew I needed to lay down and take it easy. I could feel the contractions more intensely as I allowed myself to rest. I really didn't want to bother Matt at work or cause any unnecessary worry for something that was probably nothing. By the time he came home from work, they were getting worse and I decided I needed to call the doctor. She told me to start tracking them and to page her if they were unbearable or coming every five minutes. Once I started timing them, I realized they were coming every two to three minutes. She told me I needed to go straight to Labor and Delivery at the hospital to get monitored and make sure I wasn't going into active labor. The thought of that happening at twenty weeks with a healthy baby would be terrifying- but a Trisomy 18 baby was horrifying. We made plans to drop Justin off for the night, and headed to the hospital. I apparently wasn't doing as good of a job as I thought at trying to pretend like I was fine, because the woman at check-in demanded I sit in a wheelchair. I don't know why that was so scary to me. We went straight to Labor and Delivery and my doctor had already called ahead. Instead of sending us to triage first, the put us in a delivery room. At our hospital, you labor and deliver in the same room. Going into the same room I was in the day I had Justin- with the warming table, and scale, and baby blankets and everything brought a whole new flood of emotions. The registrar came in to get us registered and she told us, "Congratulations!" and that "Matt would get his hospital bracelet after the baby was born". That was hard to hear. We were not there to have a baby! I was hooked up to machines and they ran a few tests. They checked for the baby's heartbeat and it took a long time to hear it. Long enough for the nurse to ask us the last time we had heard it, and when our last ultrasound was. FINALLY, we heard that beautiful sound and it was perfectly normal. I made jokes about how he was such a little stinker... already giving us gray hairs all the time :) They determined I was not in active labor, wasn't sure what were causing the contractions... but sent me home with strict instructions to rest and come back immediately if they got so intense they were waking me up. That entire ordeal was terrifying- but luckily all is good and we have no idea what happened. I need to try to take it easy and accept defeat sometimes. Anatomy ScanThursday was uneventful after the stress of the previous night, and I was doing ok. I read through a book a friend gave to me that another mom wrote about her journey through pregnancy with her baby girl with Trisomy 18. It was nice to read about someone with often similar feelings to me. Grandma Marge came over to watch Justin this morning, and Matt came home from work to attend the appointment. I had been preparing myself to hear the worst. There are tons of common problems babies with Trisomy 18 have, and I wanted to prepare myself the best I could. We know that our baby has Trisomy 18- but we didn't know how it had affected his body. I was having a really hard time accepting that we just weren't going to hear good news. They weren't going to tell us that we have a perfectly healthy baby like we had heard with Justin. I didn't lose faith, I'm just the type of person to always prepare myself for the worst and hope for the best. It makes things a lot easier to stomach when receiving bad news. I am never in a position where I wouldn't be able to hear good news- it's the bad news that is so hard to accept. When we arrived at the office, I requested a certain sonographer. She has been so compassionate this entire time. The first sonographer did not give us any pictures of our ultrasound at the appointment we received the bad news something was seriously wrong with our baby. When we went back again, this other sonographer made sure we left with picture memories of beautiful boy. I sat in the waiting room reading and rereading my serenity prayer bracelet other sweet friends sent us. Luckily, the sonographer I requested came in :) I began by letting her know that we requested her and how much we appreciated her compassion. She doesn't view our baby as a diagnosis- she views him as a living baby who deserves so much more. We got to see our little guy flipping all around, kicking and punching. Such a little fighter. I know that this is very vain- but I promised I would share my real feelings in this blog. I was very worried our baby would have a cleft palate/lip. In an earlier ultrasound, we learned that his arms were deformed and he had heart abnormalities. If I was having an otherwise healthy baby- a cleft palate would not be a big deal at all. I know many babies who had simple surgeries to repair it, and they are completely fine. Knowing this baby may not have the chance to take his first breath and that all we will have to remember him by are pictures, I just wanted his face to look "normal". We may never see him grow up, take his first steps, say his first word, or hit his first baseball... our only relationship with him may be through memories in pictures. I had been praying about this. I asked the sonographer if it would be too early to detect a cleft palate- she said it was not. She showed us his perfectly formed mouth. I wave of relief went over my body. Small victories :) She sat with us and allowed us to get some video of our baby boy. It was so nice living in ignorance of not being able to medically understand the images we were seeing. She mentioned to us that another mother brought in a recording device from Build a Bear and they recorded the baby's heartbeat on the device to put into a stuffed animal. She told me that if we wanted to do that, I could call her and she would meet me anytime to get his heartbeat recorded. She is absolutely amazing. Before she left for the doctor to come in, she told us that she wouldn't recommend it, but she could show us some 3D images of the baby. The reason she said she wouldn't recommend it, is because this early- even a perfectly formed baby might look very deformed in a 3D image. Babies are of course very boney and the sonographer wasn't sure the images would bring us comfort. Matt and I didn't mind and prepared ourselves for whatever we would see. The images couldn't have been more beautiful. We were all surprised. He looks like a baby. Reminded us of Justin :) I'll attach some pictures at the end of the post. I normally wouldn't share ultrasound pictures publicly, but thought you all would like to see our baby boy. If not- don't go all the way to the bottom of the post :) Just a head's up- they do look a little bumpy and "incomplete" in places. It's the imaging and not the baby. After our sonographer left, the doctor came in. We learned more about how the T18 has affected our baby boy. Instead of both arms being deformed- it now appears that it's only one hand/wrist. His hand is bent inward toward his forearm at the wrist. That was much better than we thought. We learned that it appears that one ventricle in his heart is wider than the other. This means that one side of his heart will be working overtime. We don't know exactly what that means for the future of the pregnancy, but I believe it would be something that would normally be repaired with surgery at some point. We aren't at the point where we have decided if we would put our baby through surgeries- I think it might be on a case-by-case basis and we'd likely decide just to keep him comfortable. Lastly, we learned of choroid plexus cysts on our baby's brain. I was fully expecting to hear this as it's a very common marker for chromosomal abnormalities- specifically Trisomy 18. It's what causes the extra fluid that shows up around the head and neck in a Nuchal Translucency screening. Perfectly healthy babies can have these cysts as well. The cysts typically dissolve by late pregnancy. Overall, we view this appointment as a great one. We got to see these incredible images of our baby, watch him flip all around, and didn't really learn of anything we didn't already know about. He's so perfect. Although I already developed such a bond with him, the 3D images made him seem so much more real. I now have a face I can look at whenever I want. My perfect baby boy. I couldn't be more in love with him. This baby has a huge purpose and lately I've found myself asking, "why". I don't ask in a negative way. Although it's very hard to deal with at times, Matt and I feel blessed that we were chosen to be this baby's parents. We believe ALL children are a gift from God- and this baby is no different.
So what's my reason for asking, "why"? I know there is a reason for me to be carrying a baby with such a dismal prognosis. We may never know the grand reason, but is there an earthly reason? On church on Sunday, the message was about, "Who am I?" Bringing an identity to your life. That affected me so much- this baby may never have his own identity- as his parents, we are the only voice he may have. I am constantly told how strong I am. I don't feel strong. I feel like I am positively living my life the only way I know how. One foot in front of the other- usually with a smile on my face. I can't imagine going through this without Justin or Matt. I don't want to be strong- sometimes I want to check into a hotel, escape everything, and sleep and cry all day. That's not a possibility for me- I have a life to live. I am a wife and a mother. Sunday night and each night since then, I've been having vivid dreams of what could potentially be a bigger purpose for this baby. Through sharing our story thus far, I've received an outpouring of support from friends, family, and most meaningful- complete strangers. Every time we hear how our story has inspired others in a certain way, or just gave people perspective on their own lives- I can't explain the feeling it gives me. I never thought I'd ever be someone to inspire others. I never expected to be in a situation that would help others in their lives or be of some sort of inspiration to them. I am often desensitized to the sadness of our journey. I try to focus on the positive- and it takes someone telling me that they shared my story to a stranger on the plane and the stranger sobbed, for me to remember that what we are going through is so sad. My mom ran into a elementary school teacher of mine and shared our story. The teacher cried for us. That's when I remember our story is a sad one. One night I had a dream I was on the Ellen Degeneres show sharing our story. Another night, I was being interviewed by a local news station. Last night, Matt and I were on the "Today Show." I don't know why I keep having these dreams, but combined with the message at church last Sunday- I can only guess that the purpose might be to share my story on a larger scale. Maybe we will help someone going through a hard time. Maybe we will help another family feel less alone. Maybe we will help people appreciate the small things in life and show more gratitude for what they have. I don't have the answers. Please share this blog with anyone who may be inspired by our story. Please help me to give this journey a purpose here on earth. Friday 3/14 is our doctor appointment where we will find out exactly how the Trisomy 18 diagnosis has affected our baby boy's body. Prayers and positive vibes for strength to handle the news we receive, as well as strength to get us through the next few days more calm than we were the days leading up to our previous doctor's appointment. What a great few days we've had. Matt surprised me by telling me he had some vacation days that weren't going to carry over into his next review year and he had to burn them! We had a full five days as a family. It was so needed. Having Matt home allowed me a break because two parents watching a toddler is much easier than one :) I even treated myself to a MUCH needed haircut! My sister and her boyfriend told us they were coming over to watch Justin so Matt and I could have a night off! It was awesome having people tell us they were watching Justin here, and pretty much forced Matt and I out :)
Thursday Justin celebrated his 18-month "birthday". It's so hard to believe he is a year and a half old already. Time has a tendency to go so fast, while so slow at the same time. We started the day with his 18-month check-up at the pediatrician. Within the first week of Justin's life, we found a pediatrician at the practice we just fell in love with. She is a wonderful doctor and has such an incredible comforting nature. She will tell you if you need to worry about something without sugar-coating it, but will deliver the news in a reassuring way. She really gets to know each child, and the family as well. He had a great visit! He's developmentally ahead of the game in many areas, and is in the 20th percentile for weight and 90th for height. Never saw myself having a tall, skinny kid! (They're not worried about his weight- he is a great eater and if you've seen him, you know how insanely active and busy he is all the time. He has a wicked metabolism. Who did he get that from and can I have some of it?!?) It's usually pretty easy to tell I'm pregnant, but you never want to offend a non-pregnant woman. I've had some pretty creative ways of people asking lately. "So, have you thought about having another child?" while glancing at my stomach- or in the words of our pediatrician, "any exciting things going on in your life?" When I told her I was pregnant, I also quickly explained our baby's diagnosis. She told me she actually has experience with this rare condition and in her years has worked with three families. I asked her how long each lived and if they were boys or girls. As I expected, they were all girls. For whatever reason, 80% of Trisomy 18 babies are girls, and boys have a more serious prognosis. One little girl lived for a couple weeks, another for a couple months, and another for about eight months. That may sound pretty dismal to most of you, but it's the unfortunate reality that Matt and I accepted when we chose to carry this baby. We actually took that as GREAT news. We know that there is a very good chance (at least two-thirds) that this baby may not make it through pregnancy or childbirth and our baby will be born sleeping. Finally hearing a doctor with whom we've built a great relationship with and trusted has experience with LIVING children is such an amazing thing. Since the strong majority of babies diagnosed with Trisomy 18 live abbreviated lives, doctors have a tendency to view them only as a diagnosis of "not compatible with life" and not as the children they are. Knowing our pediatrician will look at our baby as any other child and not push us to the back burner, is the most amazing thing to hear. I really can't put it into words. The next thing that our doctor said brought me to the verge of tears. She told me that our family is on a journey with many stops along the way. Some not quite where we thought we'd end up, but she is on the bus with us and we'll go through the journey together. She gave us all big hugs before she left, and we know we have found so much more in a pediatrician than just her incredible medical background. Keep praying for us and keep us in your thoughts as we get closer to the anxiously anticipated appointment at our specialist this Friday (3/14) where we will learn more about exactly what is wrong with our baby boy without just the open ended diagnosis. Let's pick up where I left off from Part 1. By Wednesday, the March of Dimes mix-up combined with the lack of movement I had been feeling really sank in. Justin hasn't been sleeping through the night lately, so I've been exhausted. The appointment was the next night and I was getting increasingly anxious we wouldn't feel a heartbeat.
When I shared with Matt how hard of time I was having, he mentioned that we knew this was a strong possibility. We knew it was very likely that we would be told our baby boy's heart stopped beating. I told him that just because I was fully aware of it didn't mean that it made it any easier to handle. When I am faced with a stressful situation like this, I tend to talk about until I'm blue in the face. Matt talks about it when he's having an OK time with it. When he's having a harder time, he keeps everything inside and becomes a bit short-tempered. We will need to start working hard to find the best way to cope as a couple. This is obviously something that our relationship has never faced and I'd say that 90% of the time we are handling it very well; together. We need to figure out how it get closer to 100% of the time. Now that I'm typing this, as long as we can keep it to just 10% of the time, it's probably healthy there are blow-ups. If we never fought or had some sort of release, it wouldn't be healthy. Yay, go us. I asked a few people for extra prayers on Wednesday. I posted something in one of the groups I'm in and those ladies all sent their thoughts and prayers for us. Before that I reached out to a few family members. Justin and I continued our day as normal. We went to our afternoon play group and he was being a menace. Time-outs weren't working, my patience was wearing thin, so we left. I was definitely feeling my blood pressure rising and knew I needed to calm myself down. When Matt got home from work that evening, I begged him to take Justin and have a father/son dinner date. I prayed quietly while laying down and felt baby boy for the first time. I can't explain that moment. That quiet time was absolutely necessary and Matt is an amazing father and husband. Thank you again and again, Matt. I met up with some friends that night where we just sat and talked for hours. About everything ranging from some college adventures to the best cake I think I've ever had. Thank you girls. Sometimes (often) escaping from my daily routine is the most therapeutic thing for me. I/we are always looking to add things to our schedule, whether it's time apart- or time as a family. When I'm out of the house and Justin is asleep- Matt gets some alone time (or time for him to play darts with his buddies) which is helpful to him as well. I felt much better, but was still anxious about the appointment the next night. I wasn't convinced I'd hear a heartbeat. I was not ready to say goodbye. I never will be, but I just want to be able to meet him, hug him, kiss him, introduce him to the outside world and all the friends, family, and not so distant strangers that want to meet him. We're very open to that. I can't reiterate enough that we don't want this to be a private thing. I want this baby to touch as many lives as he can in his short time. This blog can be shared with anyone. I don't want Matt and me to have to grieve this alone. I want to share with anyone who wants to know our story. Once we have a name, I'll start a Facebook page for people to follow along with as well. Stay tuned... I imagine you'll see a post coming up soon about the struggle in choosing a name for this baby. Thursday morning arrived and I received a call very early from the doctor office. I knew what that meant right away. Four women went into labor that night/morning and the doctor and midwife weren't going to be able to see patients that afternoon. The nurse asked me if everything was ok. I wasn't sure if she had looked at my chart, but told her about the Trisomy 18 and that it had been four weeks since we heard a heartbeat. I told her that I was fine waiting, but now that the day was here, I couldn't imagine waiting longer. She completely understood and asked if I could get there right away. I called Matt and he was able to meet me at the office. They saw us immediately and after finding out my typically great blood pressure was slightly high (shocker!), we went straight to the Doppler to listen for the heartbeat. This stinker hid a little, but after what seemed like forever (probably five seconds) we heard that beautiful sound. I had never cried hearing a heartbeat before, but this one definitely brought tears to my eyes. I can't put into words what a relief it was to hear his heartbeat. We discussed a few questions we had and got some great answers. We are in amazing hands. If anyone in the area needs a recommendation for an OBGYN, I can't say enough amazing things about our office. Without me saying anything, the doctor decided that waiting four weeks in between visits was too much for our situation. We will now only have to wait two weeks in between. We set up the anatomy scan for Friday, March 14th. I'm anxious about that one. Of course we'll find out if there is still a heartbeat, but we will also see him on ultrasound again. We know what his diagnosis is, but other than a few early abnormalities detected, we have no idea how our baby has been affected so far. The specialist will go through each inch of our baby and tell us of every abnormality they detect. That is going to be so insanely hard to hear. No one wants to hear something is wrong with their child, and I imagine the news will be just as hard to hear as the diagnosis was. I originally made the appointment for that Monday, but had to call back and reschedule when I realized that I would need that weekend to digest everything. Please continue to keep us in your thoughts and prayers and pray extra hard not only for the appointment itself, but for the strength to get to that appointment and to handle the news we receive. <3 First and foremost, I'm sorry it has taken me so long to update after our appointment. We are so blessed to have so many people from all over praying for our family and reading this blog. I know that this website is the only way many of you are updated. From now on, I will at least post a very brief update after appointments.
With that said... WE HEARD A HEARTBEAT! Last week, each day was harder than the prior. I didn't share this openly on the blog, because I didn't want people to worry unnecessarily. Although I had been feeling this baby at least once a day for weeks, I didn't feel him for a few days before the appointment. I didn't think anything of it at first since I typically feel him when I'm inactive and there wasn't very much of that. I was constantly trying to keep myself busy the best I could to keep my mind from wandering too much leading up to the appointment. I didn't feel the baby because I was active and I was so active because I couldn't feel the baby. A viscous cycle. I kept myself relatively calm... until I checked the mail. I'm not entirely sure how the March of Dimes (MOD) got this information, but I received a big packet in the mail from them. When I opened it, there was a letter "sending condolences for (my) loss". In addition to the letter were several booklets on various topics ranging from, "Bereaving the Death of your Baby" to, "How to Prepare to Try Again". I used to lose it at an emotional YouTube video or the Sarah McLachlan animal rescue commercial. I've lately found myself to be what Matt calls, "emotionally desensitized". I don't think the magnitude of the packet from March of Dimes hit me right away. Instead, it chipped away at me little by little. At first I wasn't mad at their unfortunate error. I was grateful that there are organizations out there to help families in their time of need. We just aren't there yet, and I'm hesitant to check the mail :) I've said it many times, I'm pregnant until I'm not. This diagnosis doesn't make me any less pregnant. Don't ignore this pregnancy or this baby. I'm still pregnant and he's still alive. Also, so I don't forget... I've been told by many people that they are sorry they hadn't reached out sooner, or that they had been avoiding us because they didn't want to say the wrong thing. Guess what? As long as it's coming from a good place, you can't say the wrong thing to us. This is a situation that (thank God) many people will never be exposed to; directly or indirectly. I wouldn't know what to say to someone. Matt and I have agreed that the only wrong thing to say is not to say anything at all. If you want to say something, but don't know what... just say that you are so sorry that we are going through this and that you are thinking/praying for us. Honestly, a simple, "I'm sorry" or "thinking of you" means so much to us. Although we don't have big news everyday, this is still our everyday reality. For those of you who have specifically asked to be updated after an appointment, we are so lucky that there are many of you. We don't keep a list of people who have reached out each time. It shouldn't be like this, but it's hard to remember who wants to be updated and who we've already reached out to. Even those who are very close to us. Please, please, please don't be offended if you find out an update through Facebook or this site and not directly from us. Feel free to contact us again after the appointment. If you've ever reached out to us and we haven't gotten back to you, please follow up. Sometimes I get a message while I'm driving, or in the middle of something and I cannot respond right then. I do my best to remember to respond, but since I'm in a constant state of distraction, I don't always remember. You aren't bothering me if you follow up. You're helping to make things easier :) It's been about a week since I last wrote. Although most of my posts are, this post will definitely be all over the place as I get a lot off my mind...
First, the stomach flu took over the family. Rox (our dog) randomly threw up twice. I didn't think anything of it because this dog has many similar attributes to a vacuum. Her face is always on the ground looking for her next morsel of food. I think this is why Justin and Rox are best friends. J loves feeding Rox while he's eating. His new thing is to hold food out at her while telling her, "No!" Thursday evening we were playing downstairs. Justin had been totally fine... all the sudden he just kinda stops, coughs, and the proceeds to vomit everywhere. It reminded me a lot of the scene in, "Big Daddy" when the little boy throws up all the sudden after singing the "Kangaroo Song". I got him cleaned up and he was totally fine again. About 40 minutes later, it happened again. He got sick about ten times from 5pm to 1am. He woke up the next morning totally fine again. I'm not sure I got a wink of sleep that night. I was always on standby to go into his room- luckily I caught it every time. For the record, Justin was a champ. He didn't cry when he got sick, he let me take care of him and he made the trash can each time. A lot of the reason I couldn't sleep is that it got me thinking about this baby boy I am carrying... If it was this taxing to take care of a typically healthy kid, how will I be able to handle our new baby boy if he lives. It's a completely terrifying thought. Although the statistics are stacked against us, the odds were far less that we'd even ever be in this situation. There is much less than a 1% chance that someone my age would have a baby diagnosed with T18. Of the babies diagnosed with Trisomy 18, only 20% are boys. The fact that we are having baby boy with Trisomy 18 is so insanely rare. Five percent of babies will live to see their first birthday. Five percent seems huge compared to the fraction of a percentage chance for us to even be here. Matt and I have a hard time believing in statistics right now. If there is any chance at all for something to happen, you could be that person. I'm not going to lie and tell you that Matt and I didn't think of playing the lottery... Back to the stomach flu... I did warn you this would be all over the place. Matt woke up very early Saturday morning sick, and it lasted about 24 hours for him. He had it much worse than Justin. The entire time my boys were sick, I was so worried about them. I hate more than anything when my family is sick. It's such a helpless feeling. Poor Matt just wanted to sleep, but I was up in the bedroom every hour asking if he was ready for more water/gatorade/ginger ale/broth/saltines- anything really. When Justin woke up from his nap, Matt finally got the rest he needed. Justin and I were able to enjoy the gorgeous day and went on a mommy-son date at Fairfax Corner. I got a decaf "coffee" drink, Justin had a mango sorbet, and I finally bought myself some new maternity jeans. That was a huge deal for me. Something I had been fighting myself on for weeks. I needed new jeans... badly. I don't know how long I will be pregnant. I may be pregnant for 40 weeks, or today may be my last day. Maternity clothes are not cheap. Matt and I have to be smart with our money on one income. (I have temporarily taken a giant step back from my part-time job as a Wine Consultant to focus on taking it easy and focusing my minimal energy on my family.) Medical expenses are already starting to roll in. While they are manageable right now, the future terrifies me. I try not to let it stress me out, and it's not something Matt and I have even talked about, because we will cross that bridge when we get to it. Right now, being smart with our money and trying to save while still enjoying life is our goal. I think I was just using money as an excuse to not buy new maternity jeans. I think I'm just scared to buy anything for this baby/pregnancy. My sister asked me a question I had never thought about the other day. She asked if I wanted to have a baby shower for this baby. If it was a healthy baby, I would not. It's another boy and they will be just under two years apart. Other than nursery furniture, double stroller, diapers, and things here and there, we pretty much have everything we needed for a healthy baby boy. I'm not planning a nursery right now, because I know I would have such a hard time having an empty nursery. If this baby lives, we can always put together his room. I'm not planning anything for this baby and I feel guilty about it. I know I will want to buy him sentimental things before he is born. A hospital outfit since we will be getting professional pictures in the hospital this time, and some blankets, personalized things (choosing a name for this baby is an entirely different blog post), I don't really even know. Things that if he doesn't survive, we can cherish and remember him by. Someone mentioned they had a celebration for their T18 baby while she was pregnant. Each person brought something special for the baby- not the typical practical or cutesy baby shower gifts, but each gift was something that the guest was truly giving to the baby or mother/father. It was a beautiful celebration of the baby. I think each guest made a page for a memory book that the parents could read later. I think I could do something like that- something happy to celebrate my perfect baby boy, while also helping my family and friends feel a bit more "bonded" to the baby. Bringing it back to the stomach flu one last time. I don't think I've ever been so scared to be sick. This baby is strong. He has survived the odds against him already! Regardless of how strong he is, (we will learn more in a few weeks when we go back to the specialist) we already know he has a heart abnormality. I was so scared that if I got the stomach flu that the baby wouldn't survive. I ended up with a painful stomach ache on Sunday and felt pretty run down and was so scared that I was going to catch the stomach bug. Looking back, I think the stomach ache was because I accidentally slept on my stomach while in the guest room Saturday night. I also hadn't had a slept more than a couple hours at a time for a few days... Today is Tuesday, and I'm still in the clear... Thursday is our appointment at the OB. It's a regular pregnancy check-up. We won't learn anything about the baby... just check my vitals and listen for the heartbeat. I'm trying to stay strong, but I know there is a chance we won't hear a heartbeat on Thursday. I know that no matter what, I won't be ready for my baby to go. I'm definitely not ready now. I pray every day that I will at least get the chance to meet him, hug him, kiss him, tell him how much I love him. I want my family and friends to meet him. Hang in there baby boy, we love you. I am in a number of support groups for people in similar situations. There have been many "strangers" who have contacted us to thank us for sharing our story as they are going through something similar. I have learned that this blog is not only helpful to Matt and me, our friends and families, but this website is also helping those we have never met as they go through their journeys as well. Feel free to share this site. It is a wonderful feeling to feel that what we are going through can help others as well. I know hearing about other's struggles always put life into a new perspective. I saw this and had to share it. What a beautiful metaphor. It really reflects what I feel right now. When I'm sad and grieving, I'm grieving for the idea we had in our head of what this baby would be like- our "Italy". Instead of cancelling our trip completely, we are choosing to go somewhere else. This place may not be as obviously beautiful, but it will show us more beauty and teach us things we never would have learned in Italy. WELCOME TO HOLLAND
by Emily Perl Kingsley. c1987 by Emily Perl Kingsley. All rights reserved I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. |