These past few weeks we have been doing okay. We have our moments of sadness, but mostly we have been enjoying our time we have together and even better with the weather warming up. But, yesterday was a roller coaster of emotions.
There has ever only been one death that has really impacted me before. I still remember that day so vividly- and it was almost 6 years ago. I was in high school, and it was a family friend who passed in an accident involving a tractor. I wont drop too much detail because it is not my story to tell, but this has been the only death that has really impacted me. Until now.
Yesterday, we drove the long drive to our doctor. This was also the day we would go talk to the funeral homes and the hospital to get some arrangements made for when our time comes.
We pulled into the first of the two funeral homes we would look into- it felt weird 'shopping' around for a funeral home because its a place you hope to never have to go to. But I felt such a calmness when making the arrangements earlier in the week.
TJ was able to take the day off because it was such an eventful day and it involved making decisions we needed to make together. I was so happy to have him with me. Even though it was a sad/hard day, it was nice to see the humor in him- we both really needed it; to remember that we can be happy and laugh together. I wont lie, this has been super stressful and difficult for our marriage- he works all the time to provide for us and when I do get to see him I just cry, hormones from pregnancy do not help make this any less hard.
We went in to the first funeral home- we met Jim; a man whose stature was a bit intimidating, yet he was so welcoming and we could feel his sincere condolences with his firm and gentle handshake. We went back into a conference room passing a service room that was hosting a viewing. It was odd to be seeing a viewing take place while planning what we would be doing in the next few months.
I came prepared with so many questions; luckily TJ knows what a morbid creep I am and wasn't too alarmed. ;) Poor Jim on the other hand, he said he has never had to tell people as much as he did to us- what was planned to be a half hour appointment was approaching an hour. We learned so much about the process of what would take place of our sweet little baby. I felt like I was just doing an article for a paper or something- I was trying not to really think that this was for Eva, rather than just getting informed for someone else- not MY baby.
He asked if we had any other questions. There was one question I didn't want to ask, but I needed to know. How would they come take her? It still makes me cringe thinking about this. We are not leaving the hospital with Eva. She will not be coming home. Even though I have known this for some time, it is still hard to fully comprehend. Essentially this man, Jim, gets to take our baby girl to a place no parent wants to send their child.
While they do it in the utmost respect, it still felt cold. He gets to take Eva on her first and last car ride. Something that every parent remembers; the first car ride home. I remember ours with Marley. I was so nervous, I made TJ take all the back roads because I didn't dare go over 40 miles an hour, that was our precious baby we just had and I would rather go snail paced than to hurry and rush to our home. It was odd leaving the hospital, like what do we do now? With Corbett it was a bit different, we had to rush to get to Primary Children's and I didn't feel like we were driving fast enough! Funny how one kid to the next has changed. And now again with Eva.
But we don't get the luxury of driving her home. We don't get the luxury of walking in the door and telling her this is where we live, where she will grow up and learn. This will never get to be her home. Her home is in Heaven, while that place is ever so lovely....its not here.
We spoke a little more trying to lighten the conversation as much as a meeting like this could. And we left feeling no less comforted or prepared than when we came in.
As we drove to the next home, we tried to discuss what our thoughts were- we were given more options than what we originally thought could happen. I was grateful to know about these options but it didn't help our thought process or decision any less easier. We were still so confused on what we should do.
The next funeral home was nice as well; we met with John, who was so warm and welcoming. Why are these guys so nice and welcoming? I wasn't upset that they were so welcoming and kind to us- because this is their job. It just sucked that we are once again, stuck in making these decisions for Eva.
He was very sensitive to our needs and answered all the questions we- I- had. And I am pretty sure I weirded him out with my odd questions, but was ever so polite and didn't have a nervous look on his face like I was some creep. That was nice :) ---Can I just stop for a minute and tell you how wonderful TJ is? He sat there with me and listened to everything I was asking, not cringing on the things I am sure he didn't want to know, and for not being scared of me. Haha! He knows I am morbid and is okay with that. Normally if I get too creepy he just sends me to talk to Cyndi. But he told me that he was glad I came prepared with my questions. It was good information to learn.--
This death will not just affect TJ and I. Not only our parents and family. This will affect our children. Yes, those two who I sometimes don't think about in a sense of affecting. When I look to June, I see a part of TJ and I dying along with Eva. But then I remember that this will be hard on the kids too. Marley and Corbi. The innocence of their childhood will change.The things other kids wont have to worry or deal with. And honestly I am not prepared for the hurt that will happen to them. I want to protect ALL my children, and I feel selfish because I have been so focused on how TJ and I will make it after wards. So focused on how I am going to get myself back up off the floor to take care of my children. How do I feel so torn that I want to take care of Eva but I can't because I have two other kids depending on me? How do I put my grief aside to help my kids process all this?
The other day we went to a play group and there was a little baby in a walker. Corbi loved pushing her around and laughed while playing with her. This was without a doubt the cutest thing, but it also pained me; Corbi won't get to push his little sister around in a walker making her laugh. Instead he only gets to say goodbye and I hope and pray he will remember her. Remember that he does have another sister who was too perfect for this world.
John explained that even in his 35 years of being in service he has only had a infant death once. We are case number two, and how they have been so fortunate for that, they gave us so many options to help our children grieve. There it was again- not about us, but our children. I have to add that all my questions that day had been about making this not scary for them, because I am aware that while we have talked about Eva dying, we have not gone over the process of saying goodbye to her. I will do everything to help my kids not be scared of this process. Because this 'process' is all we will have of Eva, and I don't want them to be scared.
We once again left feeling peace, but also more conflicted. We still didn't have a game plan of exactly what we wanted to do, and now we didn't know which funeral home to go to. We wanted the best option for Eva and we liked them both. (we liked them as much as any person who is put in this position could--haha, I feel weird to say that 'I like funeral homes' ;) )
Enough of the death talk, we were heading over to check on Eva!
Kerri was so happy to see us, we have formed a unique relationship and felt so comfortable with talking about everything Eva. It was really awesome because she grew a pound over the month!!!! We got to see her SUPER long legs and had them kicking away. She eventually settled down and we saw a new side to her- she was hangin' out and chillin' just like Corbi does. Legs out and hands behind her head. It made me laugh because I think it is so funny that Corbi does this and now Eva. It was precious to see that she is a perfect mixture of both of them- yet still so stubborn with her hand in front of her face. :)
Each ultrasound I am learning so much, and Kerri wears a proud badge stating that I could be a ultrasound tech when I am done because I can point out what we are looking at. It was nice to have a normal conversation. She did mention that I am slightly over the the amount of amniotic fluid I should have BUT Eva's kidneys were working and she had a full bladder- another good sign, she can swallow! This was such amazing news to hear, this means she is doing really well, that her organs are functioning. Small victories!
We met with the our doctor who just went over the small stuff and we headed over to the hospital to meet with the bereavement lady who was going to be our support when Eva comes. It was hard walking into the labor and delivery wing. It was very small from what we have been accustomed to and seeing the nursery first thing walking in was not the easiest.
They gave us a tour of the basic wing and we met with the head nurse who spoke with us a little before Jane arrived. -Jane is the 'bereavement worker' so she basically handles all the comfort care for us. She is such a wonderful woman!- The hardest part was when they told us we would be staying in the least occupied rooms. Which were right across from the nursery. It was so hard to look into that joyous room and only see heartache for us. Because our baby will never go into that nursery to get checked up on. To pass her hearing test, get poked for screenings. None of that will happen with us for Eva. We look into that room and see heartache and pain.
We spoke with Jane and she is such a wonderful lady. She hasn't been through loss directly but her daughter has, so she was very emotional when meeting with us. She gave us an in depth tour of what we will be doing. She showed us the cuddle cot that we will use, for those who do not know-and I hope you never have to use one- a cuddle cot is a 'cooling pad' placed in a Moses basket to lay babies who have passed in to help....preserve...them longer ( I hate using that word), it will allow us more time to be with her.
I still am struggling with wrapping my head around this part. I would be so happy to just be pregnant forever rather than have to have the best and worst day all in one. One part of me is so excited to finally meet Eva. But it is also so hard to think about, as this will be my only chance I will get to hold her in my arms physically. June was a month we were so anxious to have arrive, and now...as it lingers near I struggle. I am envious of those other expectant moms who are 'so excited' to have April, May, June, and so forth to come so they can no longer be pregnant and have their babies. It hurts so much to see all these moms who are so anxious- and they have every right to be! I am so happy for all the moms who I know who are expecting a new little bundle of joy. Because it is so wonderful that they are adding to their family, that they get to have a sweet baby to snuggle and love on. While these moms are so anxious for the time to come to an end, I am anxious that it doesn't. In the end *I* am the mom who doesn't get to take her baby home to love on. *I* am the mom who will come home to an empty bassinet. *I* am the mom who struggles to watch other babies even now make milestones, because I wont get that with Eva.
Now I say this and I don't want my expectant friends to stop posting and being happy that their babies are making these wonderful milestones- because it is very wonderful! YOU are a mother and deserve to be proud and show off all these wonderful milestones, to be so excited and anxious for your birth month to come around, count down the days until you get to hold and love the baby you created; the baby you have carried tired and endlessly, sick and emotional for nine months. You deserve to be so happy, and I hope that I am not taking away from any of that- it is not my intentions. I am so happy for all my friends who are having babies, I really am. Just know it is also hard for me, because I was so excited too- and while a part of me is still, it is hard to know at the end of this pregnancy...I still come home empty handed.
I really try not to make this so sad, because honestly I feel so blessed and loved at the same time. When we had to go to the funeral home to make arrangements, I was sad that this was our reality. But I also felt such peace and an overwhelming love surround me. I knew that Heavenly Father had surrounded me with loving angels to make this day less hard. Without these prayers I know I couldn't make it through the planning, and so for that I thank each of you again for the prayers in our behalf- I feel them daily. I know that as I cannot fully grieve for a loss that is still yet to come, I feel such peace at times because I know this is not the end. We will get to see Eva again, and while that is a long time from now...I still will always be her mom. Forever. Eternity.
Friday, April 21, 2017
Thursday, March 9, 2017
Update: 25 weeks
Last week, I had my first follow-up with my doctor since we found out about our sweet Eva. I knew it was going to be a long day and I was lucky enough a friend was able to watch my two kids so I could go without having to drag them around. TJ had to work and couldn't take it off so I was on my own. Typically this wouldn't be an issue. I always went to my appointments by myself and then eventually with Marley in tow. It wasn't anything big happening, just the normal 'appointment'.
This time I felt different; I was anxious, nervous, and sad all wrapped in one. Mind you- my doctor is an hour and a half away, and without kids in the back seats to try and calm down I really had lots of time to think. I kept thinking that I was going to have a positive attitude today, that I was going to go in and not cry. I was tired of constantly crying and my eyes have a constant ache because they shed so many tears lately.
I went in for my ultrasound first thing, and I was happy to see that the same ultrasound tech came to greet me. It was weird for sure to say I was happy to see her but it was nice to have someone I was familiar with. Because the truth is, I will never forget her face. She changed our life with her saying "I will be right back".
We talked about how things were going and I was able to be honest and not just say 'good', she knew. She had told me she kept thinking about me and we talked about the specialist I went to see. She seemed to be more talkative which I was grateful for. To not be left alone in my thoughts.
I asked a lot of questions, basically what we were looking at and she told me everything on what she saw, every detail. I know I already said I was grateful for her talking in general but I was again grateful she told me everything she was looking at- this gave me the chance to get to know Eva more- get a better description so I could picture what she looks like. Because she is bigger than the first time they saw this.
I stated last time that Eva has what they think to be a cleft palate. We were able to look more and see that we believe it is to be on her upper lip. I know it sounds crazy, but I am glad to know exactly where so I can picture her better in my head. Then I asked the hard question of where does her head stop.
Even as I type this my heart just aches and I cant help to have tears, because I know that this is not a glitch on the monitor. This is real. This is who our Eva is. She is perfect to me, but not perfect enough to live a full happy life here with us on earth. It pains me to my very core that this is our reality now. I wish I could fix this, I would give anything to just be able to make her whole and healthy.
When we went to the specialist they gave us a disc of pictures of Eva, and I still haven't looked at them. But this time I asked so that TJ could see more of Eva since he wasn't with us. And I have looked at them, because the truth is, this is all I will get. I wont get to have photos of milestones like crawling, or first food, first steps, first hair cut....I only get few ultrasound photos and 'bump' photos we take because those are the only milestones we will get with her. She is growing, we just don't get to clap for her, or hug her sweet little face and tell her how happy we are she is doing so great.
We were still taking all the pictures needed for sending to our specialist, and we couldn't help but laugh. Eva is stubborn. Just like her big sister. She would NOT mover her hands away from her face. We would try different angles and still, her hands were covering her face as much as possible. This just made me laugh because I was learning more about Eva- and that she is ever so much like her big sister. So stubborn and probably just as sassy too.
When I met up with my doctor we briefly talked about what our next appointment was to look like. I didn't want to go into detail as TJ was not there to be apart of it. We just talked basics on if I can travel far distances and when the hospital would give us the okay to induce labor.
This was only my second time meeting with my doctor as we had moved and switched things around, but I feel so comfortable with her and I feel that she is our best doctor that we have for our situation. She has only had this happen once and that was in residency. BUT I feel she is doing great amounts of research and calling fellow colleges to help us with the best care. And for that I am so grateful for. I am still a 'normal' patient but also feel like she is going above and beyond to help us.
At our next appointment we will be going over to the hospital to take a tour and meet with the staff to start our birth plan. I wont go into much detail but we will be making the decisions of how our 'birth plan' will go and the 'after' as well. This is an area I struggle with. Because of TJ's work schedule we are trying to coordinate this to happen on his week off. Not only that but we have a busy month, full of wedding anniversaries and birthdays.
Eva is due on our wedding anniversary (14th of June), and our sweet, stubborn, and sassy 3 year old turns 4 on the first of July. We want to give us enough time to grieve a little before we celebrate 4 years with our first born. Because that is a miracle in itself- we have almost survived 4 years of this sassy person! And we want that to be joyous and celebrate even though we are missing a piece of our heart. There is no easy answer to say 'okay lets do this day' because in reality we are saying 'okay, this is the day we will say goodbye to Eva' . No easy way. And because all of this is a gamble, we have no idea if she will be stillborn or if we get a few minutes with her. Our chances of stillbirth increase as we move closer to 40 weeks, but do we risk it to spend 5 live minutes with her and loose potentially 3 weeks with her in the womb kicking away? The only safe place for her is in my belly, and I can't say if I want to be selfish and keep her those 3 extra weeks or give us-her parents- the chance to meet her alive if only for a minute or so. Bring back the scoop of sucks and load it on the plate again.
I want to do a quick update as well so this isn't so gloomy. I have a picture of our sweet Eva, and because of circumstances I want to share this picture because it is what we will have of her.
This is a side 'profile' of her entire body. it shows her body and legs curled up real snug, then you can see her head as well as her little nose. She has the same nose my kids have! We are currently 25 weeks in the photo but measuring at 23, so she is still behind on growth but the good news is- she is growing! She is about 1 pound 4 ounces of kicks and punches, and I am enjoying each one as much as I can.Eva loves it when TJ rubs my belly. She starts kicking and moving around if he stops rubbing, and this is something he is already used to with me! So, once again we have another mini-me who just loves to have her back scratched and rubbed ;) Poor guy will never get a break!
We finally got our little representation of Eva- a lamb!
When we spoke with the child counselor, she recommended us getting something to have to represent Eva. While she is still here with us we can create memories of Eva with this lamb. We adore our lamb and she is very much loved on. We all give her hugs and kisses but my favorite is at any given point the kids will go pick her up from her special spot in our living room and give her a big hug and kiss; sometimes even a snuggle while watching a show or reading a book. They tell Eva lamb how much they love her. This has helped with the 'dealing' portion of grief as we know Eva will always be with us. Maybe not in person but she will always be our little lamb!
Greg Olsen has always been my favorite artist and TJ and I both LOVED this picture of Christ holding a lamb. To me it is Christ holding and loving our little Eva.
There are so many specific people who have helped with this time of hardship, and I want to thank those who have been so wonderful and supportive to us. Those who have answered the phone no matter what they were doing to listen to me cry and just to talk about what I needed to--Thank you. And to those who have reached out with comfort and support and prayers, we appreciate them--Thank you.
Those who text and call me just to check how I am doing and if I need anything--Thank you. My new ward has been phenomenal and I am so grateful to be in such a loving ward.
To all those who have donated to our youcaring fund--Thank you! We are so grateful that there are so many willing to help those in need. I have an overwhelming sense of gratitude as my brother updates me with the support we are given. We really appreciate it all!
Along with the youcaring I know there were so many that reached out on Facebook, I may not personally reply (as this is still a hard time) but I appreciate your kind words and thoughts to us.
So to end the thank-a-monies ;) I want to share with you our song for Eva. Marley is the one to ask for it in the mornings during breakfast- I feel music is a 'relief' from all the grieving and this song is so dear to us. We know this to be our 'baby Eva song'
Sunday, March 5, 2017
My dear children
A letter to my children:
I hope one day you don't remember the bad days that happen more frequently. I hope you know that even on my hard days I enjoy your laughter, smiles, and humor that without a doubt you got from your dad.
Even though I probably seem so distant -which is, without a doubt, the biggest truth- I love to see that you two are so kind to one another, that you play so well together, that you are so smart building puzzles all by yourself without help. I notice on these days that I have less patience and can barely get up off the couch to take care of me let alone you.
I'm sorry that I get so tired and just want to lay down and sleep. I notice you seeing me drifting into sleep and you go grab a blanket and tuck me in and lay with me. At three years old you are so aware and kind to know how to help.
I know this is all affecting you two, being the big sister it seems you have learned the roll of caring for your brother with helping him get drinks of water or helping him with some cheese when he gets hungry.
I wish I had more energy to go do fun things like going out in the snow, coloring, or working on the alphabet for preschool. I know I am struggling, but I also notice you struggling too.
I see the hurt in your eyes when you stop during playtime and come to sit with me. Telling me you are sad about Eva. I ask you if you want to talk about all you can muster up to say is why does Eva have to die. I wish I had an answer for that, a good one. I wish she didn't have to die. I wish that we got to bring her home and you got to play the big sister roll of helping me with changing her clothes or holding and burping her. Teaching her how to crawl and walk, laughing with her. I wish SO much that we didn't have to say goodbye at the hospital instead of hello.
I hope you know without a doubt this is not your fault. After talking about it the first few times when you were still so confused, I saw the sadness in your face and tears like you did something wrong. My sweet Marley, you did nothing wrong. I wish I didn't have to bring such hard reality to you. I wish we didn't have to talk about death, and know that it is so real, and happening. To us. To you. I see the fear that you think mom is going to die too. Which in a hard truth, part of me will die. When Eva dies, a part of mom and dad will go with her. Just like you.
I wish that I could take away the hurt you feel knowing that this baby we have wanted for so long is no longer an excitement for you. You no longer ask me when Eva is coming because you know that as soon as she comes, we have to say our final goodbye to her.
I want you to meet her, but I am also fearful as well. What if she passes away in your arms? This is a hard truth that we have to deal with and face. Every mothers worst nightmare is having to say goodbye to a child. But I am sure it is your nightmare too, saying goodbye to a sister you have wanted to see grow.
But during the meantime while we sit and we wait, I love having the happy memories. The ones where you sit and read to Eva and tell her all about Star Wars. I have memorized the book because its what you want Eva to know about you. And I believe one day you can sit with her and have in depth conversations with her about why Darth Vader is the best while doing her hair. When I think about this, I cant help but smile and laugh. Because you really have this huge obsession with Star Wars. And really, when we ask you what you want Eva to know and learn about you....of course you pick Star Wars!
Even during my hard days you still like to have tickle wars with Eva, and sit and put your ear to my belly. Then laugh because you say she farted. This also makes me laugh you find it funny you think she farted.
I try to have you put your hand to where she is kicking and get to feel that special bond with her, but you get so annoyed because she doesn't like to move right away or moves around so you miss it. This makes me laugh and know that once again, I have a stubborn girl just like you.
I love that every morning you ask if we can listen to 'baby Evas' song and we sit quietly and listen to her song and then a few more songs like it so we can feel her close by.
I love that even though it is hard and sad to hear you say it, that you pray for Eva. This is something you come up on your own and have no help from us. You ask Heavenly Father that Eva doesn't have to die. Oh my sweet Marley, how I wish this was true. I wish and have asked the same thing. I hope that the doctors are all wrong and that she comes out perfect and can live a long healthy life just like you and me.
But once again, this is our reality. In June we have to say goodbye to something we wanted so badly. In June, we will have to watch a part of us die- and I hate to bring that sadness on you my sweet children. Because I know you will be hurting too, along with us. Though it will be different for you, I know it will still be difficult knowing that our lives will not be the same.
As much as I want you to always remember your sister, I don't want you to remember the pain this has brought into our lives. Because I promise, one day we will start having more frequent good days, and maybe even go on some crazy fun adventures. These things I want you to remember more than anything!
In my prayers I ask that this doesn't ruin you, it doesn't take away your sweet innocence, I wish that this didn't have to happen so you didn't understand how real death is. That it just happens to some people when they are old or get sick or something sad happens. THIS is our 'something sad happens', and it is so real.
It is......so....real.
And for that, I am sorry.
Tuesday, February 21, 2017
The day our world changed
This day, this day will forever be planted in my memory as the day our world changed.
(This is a long read, and it has all my raw emotions on what went on during this day(s) )
I can still smell the way the radiologist room smelt, and the way it was a bit cold in the room- not too cold but enough to make my exposed belly a bit chilled.
February 2nd: We traveled the hour and a half to see our doctor for a first visit, also the anatomy scan. To us this was just a triple check to see if we were still right and the ultrasound was true. I mean we would have felt so silly after announcing that we were having a girl to have to turn around and say "psych, its a boy!". We had a plan to get things done that day prior to the appointment, TJ had to go take some tests for work and we had to get some shopping done while we were in town (We really could not waste the time and not do shopping- to all those who live a bit further from a 'town' understand ;) )
To us this was just a normal day, with this being my third I knew the routine and wasn't nervous because I have had two healthy kids so I didn't think anything could go wrong. Boy, do I wish I was wrong.
We first went in for a routine check up, meet our new doctor, catch up to speed. TJ had to take his tests so I was running solo with the kids in a small doctors room- boy was I just so annoyed that the DMV *had* to be closed for a lunch hour because I could have used a hand with these hooligans. They liked to touch everything, and there are many....objects to touch in a gynecology doctors office. Talk about wanting to crawl in a hole, luckily my doctor was super nice and understanding- it didn't even phase her! (I guess in her profession she is used to it a bit). Overall the appointment went really great and we had a separate appointment for the ultrasound, she informed us that she doesn't go into the ultrasounds like I have been used to. So we went out to the waiting room because we had an hour to kill before it was time to do the anatomy scan.
The kids were already done, being in the car all morning and not being able to really run around makes them go crazy! We found a pediatric wing that gave us some knock out drugs....TOTALLY kidding, but a girl could dream, right? No, we found the pediatric wing in the clinic and they had coloring tables which was about as good as the knock out drugs. We sat and we laughed with the kids and played a version of Simon Says with Skittles because coloring only could take up so much time. Seriously, trying to entertain two toddlers for an hour in a doctors office with no toys (flu season)....if you can manage this you will feel like you have won Ninja Warrior because it is....intense.
It was finally time to go see the radiologist and we had to wait a FEW more minutes. The kids found water to drink from (again, like Ninja warrior, we had to avoid this crazy obstacle of water everywhere and being kicked out for bringing two crazy kids- luckily not a lot of water was spilled but the kids sure did get there water intake in for the day!) We were called back and went to meet our radiologist. She was a sweet, quiet lady with short blond hair and glasses- she didn't look like the super warm person, but didn't seem totally cold either. Just another day another ultrasound to her. (She probably saw the two kids spilling water everywhere in tow and wasn't super excited about that- whatever)
She started the ultrasound with the cool gel that I wished was a bit warmer but I was too excited to see our baby to even care how cold it was. I wanted this radiologist to have a somewhat better day (maybe she was having a bad day and that is why she didn't greet us with the biggest smile ever? I can only assume but I wanted to make her smile and talk to us more) so we tried to play games like: "lets-guess-what-we-are-looking-at" and "is-this-the-leg?" We felt a sense of accomplishment when she smiled and started talking to us more, even laughed when Marley let out the manliest of burps ever (if you know Marley, she takes pride in this and in fact does have these loud belches that you swore were from a grown man- where does this even come from?) But things started taking a turn of events.
She started asking me what my due date was, like it didn't say in the chart she had and asked me who my doctor was- again, information she could easily check the chart for. She kept looking around and act like everything was normal and in a quiet yet nice voice and a faint smile said "I will be right back". My heart sunk. I have a mom friend who is a radiologist and I know that that didn't mean something good. I started to panic. "TJ something is wrong" "No its not" "It is, because she said she would be back" "Maybe she is tired of us talking trying to make her laugh" I know he was just trying to crack a joke but I knew that something was off. They don't up and leave because they have to go pee.
It seemed like forever while she was gone and it was so quiet in the room besides the noise and chaos from our two kids. But it was a different feeling in the room, I started shaking because I could feel the cold more and because I was scared. Shortly after the radiologist returned in the room but kind of stepped back and in came our doctor. Why would she be coming in when she said she doesn't do the ultrasounds? I knew we heard a heartbeat and I felt movement so, what else could be wrong?
She mentioned that she just wanted to double check what the radiologist had seen (What did she see, and why didn't she show us first?!?!? I was almost mad at the radiologist for hiding something, like I was being tattled on and our doctor had come in to discipline me). At this point I knew something was amiss but I was hoping that this radiologist was new or whatnot and that it wasn't anything. They put more gel on my belly which I didn't even feel but at the same time felt colder due to the shaking and pit-in-my-stomach feeling. They checked what they were looking for- it was her face.
Our doctor tried explaining what she was seeing, and honestly, I remember it sounding so gibberish. She was saying things like "skull", "fully formed", "didn't". Nothing was making sense! She said that our baby had A__________(it wasn't anencephaly but a different word for it). "Well, what does this mean?" "I am not going to sugar coat this, it means that your baby is not viable." Viable? I heard her heartbeat, I know she is not dead. Why are you telling me she isn't viable?
They asked us if we wanted the kids to be taken outside for a minute so we could talk some more. No I don't want to talk, what more is there to talk about? You told me my baby isn't viable! We reluctantly but willingly let the radiologist send them out to play with some friendly nurses, and our doctor sat on the bed. I sat up- this couldn't be good.
I don't remember everything she was saying, it was muted by my sobbing and shaking. She told us that when our baby is born she is not going to make it. She gave us some options, and got started on the information for the specialist. She told us that the ONLY maternal and fetal medicine doctor in the state was in Fargo. I had no idea where exactly Fargo was but I figured it couldn't be that far. Wrong. Its a 5 hour drive.....from there.....and we lived an hour and a half away from the doctor.
She gave us a minute to be together and went out, the radiologist was still in the room. I asked the question more than once because I wasn't understanding "is she in pain? Am I causing her to hurt?" She told us no and that she couldn't feel anything. This didn't make my decision any easier. Because I knew that if I were causing her pain I would do what it took to help her not hurt anymore. But instead this complicated my feelings even more. I repeated more questions that our doctor already answered but I needed to hear them again.
During those few minutes we just held each other in silence and tears. Our doctor came back in with two appointment slots for seeing the doctor in Fargo. One was for the next morning at 7 am or on Monday. There was no way I was going to wait all weekend to talk with this doctor who had better equipment to tell me that it was all a glitch and that they were wrong and had outdated old crap of equipment. Plus TJ started his new job on Monday. So we took the Friday morning appointment not knowing what more to even do, just sit there. We couldn't move.
My doctor, who I have felt so close to-with this only being our first visit with her. "I know we just met but I am a hugger and I feel like I need to hug you." She isn't much older than I am but I felt such a motherly tenderness in her embrace. And I sobbed some more.
I forgot how to move, what should I be doing right now? All I could do was be a blob on the bed and cry. But then my bladder reminded me it was full and had been full for some time. I managed to make it to the bathroom where I took one look at my face- lobster red and splotchy ( I wear my emotions very well) and sat and cried even more. This time it was the noisy sobbing; why in the world was this happening?
Something I want to always remember (and this is where our religion will come out): When we prayed for this baby we were not in any position to bring a baby into the world, just barely getting a job and going to school full time with me at home with the kids. It was a true test in our faith that if we listened to the Lord we would be blessed. TJ told me "this is still a test of our faith" I know this is a very private moment but its something I want to share because it is who Eva is. She has been our spiritual, trial-testing pregnancy from the start. We decided we still felt her name was to remain the same.
So we started our journey home, which was still so quiet (besides the blurring noise of the movie in the back-which we were so grateful for at that moment) and we sort of went into auto pilot mode. We didn't want to eat, I couldn't even think about food or water. All I could do was weep about the news we just received. We didn't make any phone calls or talk much. Besides, they told us that we needed to see the specialist to confirm what was going on, they could be totally wrong! During our drive home we did make a decision- we were given a few options and knew that the specialist would go over options the next morning. We didn't even mention them to each other but we both felt the same thing. I remember watching an episode of Private Practice (sister show of Grey's Anatomy). One of the characters (Amelia) has a baby with the same condition (I remembered it was something brain because she was a neurosurgeon and she had a baby without a brain) and she found a way to donate her boys organs. This was all I could keep replaying. But the thought still made me sad and weep. I didn't want to have to think about this, no mother should!
We took a brief stop to do a potty trip for us girls and when we got back in the car TJ was reading an article about a family in a similar situation, and they were able to donate their babies organs. We were quiet for a short time when we brought up the subject on what to do. Either way it wasn't any decision or option that we wanted- we wanted our baby to be healthy and to be able to live! We both thought to ourselves that the best way we could do some good, that this wouldn't be for nothing was to go to term and donate Eva's organs to help other babies. We didn't really discuss rather than just agree that this is the best way we felt.
Now, as hard as this decision, there was still the termination of pregnancy that was weighing my mind. But that is a different post for a different day. Like I mentioned , none of the options they gave us were ideal. We just wanted this to be a sick twisted hazing ritual to all newbies of North Dakota.
I felt better, as I was still sad, I started to feel more numb than sad. If I couldn't keep my baby, the least I could do was allow other moms to keep theirs. That somewhere out there Eva would still live on. To me that was a comfort; the heart that was inside Eva now could help save another baby and still be beating somewhere in the world, she would still live on and get to experience life in a sense. How badly I wanted her to live but I started to look at the bigger picture. My baby could save lots of babies from having to die. This could be Eva's mission!
My mom had been texting me that day with 'how was the appointment' and I wept each time but changed the subject with 'TJ passed all his tests!' and 'How was work?'. Just small talk because we didn't want to mention anything yet until we say a specialist. But it all took a turn when my mom called me- something I couldn't hide my sobs from. And it was the first time I actually said the words of the diagnosis, it was the first time it felt like this is real and not a dream.
(More religion) We spent the night quietly on the couch just 'watching' a show. Meaning the show was playing but I am not sure what all happened, we were trying to distract ourselves from reality. And for that time it felt really nice....to feel nothing. We were trying to get a hold of some priesthood holders to come over to give us a blessing. It was already so late at night and we had to get up in 3 hours to drive to Fargo. Without even asking questions I asked the only person that I knew in our ward and she gave me the appropriate number. We got a hold of him and without questions he came over within 20 minutes. This is a lot to ask for at 9:30 at night. I know it was a blessing in itself the willingness and speed to come over.
Now I don't want to share their identities because they shared some personal stories of their own and it is not my place to share those. But they had no clue or understanding of what they were walking into when we opened the door. But I will say it was a special moment that we knew that Heavenly Father was aware and listening to our hearts that he sent these two men.
I was hoping for a miracle, or something. I wanted to ask them to say that everything was okay and nothing was wrong. As I sat during my blessing I kept hoping to hear those words 'miracle' and 'healthy'. Any indication that there was nothing to worry about. What I did hear what that Heavenly Father loves me and he knows my pain. That I would feel His closeness. More words were said but nothing about this being a sick game and that we were to have a healthy baby. Why? If Heavenly Father truly loved me, why would he put me through this? Why do I have to feel this pain? I didn't want his comfort and closeness; the best way I could feel He really loved me is if he made a miracle happen and that our baby didn't have to die. I wasn't angry with God, but more hurt and alone than anything.
We were going to stay up that night since we needed to be on the road at 1 am. But both being emotionally drained we decided two hours of sleep would be good. We prepped the car with food for the trip and headed for bed. I felt that Heavenly Father answered one of my prayers because that night (or should I say nap) I felt like I was in a theater, watching a black screen, feeling no pain. But, I wasn't alone. Nobody in particular but I felt love.
The alarm went off way too soon and we somberly got the kids loaded up and headed out to Fargo. It was dark outside but the moon and stars were so vivid that it made the dark skies not so dark. We aimed to make small talk to keep our minds preoccupied and not think of the appointment that would come in a few hours. The kids didn't sleep so the sound of the movie going wasn't bad for any of us. It kept them busy but left us busy to our own minds as well.
When we entered Fargo I felt like there wasn't a glitch on the screen, that this all really was real and not a dream. BUT I still had that hope it was not real- that the radiologist and doctor were wrong.
We met with the one of the nurses, Erin, and the radiologist, Amber. They were both so sweet and kind, but I didn't feel like it felt.....overly done. Not like they were looking at us and saying they felt sorry for us. But more like we really care about you. And I had never met these ladies before but felt okay with them. I hope you never have to meet them at the same time in their workplace; I could never wish that upon my worst enemy. Being there meant something was utterly wrong.
I know radiologists aren't supposed to mention much to you because they are not the doctor, but I decided to ask anyway. I asked her if it really was bad and not by some miracle our baby was perfectly fine. She told me that it didn't look good, and that there are some things concerning and unfortunately this was all real. I hated hearing it but I appreciated her honesty.
Good news is they let me pee before they started so I didn't have to sit and hold anything while we waited for the doctor to come in.
It was like an a crowd of people came in to our room (it was only three: Amber, Erin, and Dr. Van Eerden) and they had some nurses take our kids out- more signs that this was real and that something is really wrong. He started out telling us what we already knew, that Eva really did have anencephaly. He discussed further on what that meant and did a 'live' ultrasound explanation of what exactly we were seeing. I kept asking about Eva's heart, and if it was healthy. It was hard for me to say but to know if she had a healthy heart was really important because that meant it could help save another baby somewhere. Then came the other news.
This wasn't the only thing that was wrong. She also had a cleft palate or lip, but didn't know the severity of it because it was in ultrasound. Okay, I can live with cleft palate....its not the end of the world, just something physical. He then kept adding more things that were wrong. It felt like we had already had a huge plateful of suck and he kept adding more spoonfuls to it, where it felt like we couldn't hold the plate any longer because it was so heavy.
He told us that during his viewing he did not see any fluid in the stomach, which could indicate that there is an esophageal issue and she is unable to swallow at all. 2 scoops of suck.
He then mentioned that because of the blood vessels to and from the placenta to the baby there is a possibility that she may have down syndrome or another genetic issue. 4 more scoops of suck.
This could have happened that all these issues combined caused this genetic issue to accrue or it was something that TJ and I caused with our genetic make-up. 10 more scoops of suck.
He asked us if we had any questions. "Can we discuss about organ donation and how that works?" "Unfortunately, we do not accept organ donations from babies with anencephaly". Lets just back in a semi load of suck and dump it on us.
There was more talking about reasons why they wont accept our little Eva's organs and it also took in a factor that they didn't know what exact genetic issue she had, and they went into further discussing the testing that would need to be done. I just couldn't wrap my head around it. There are babies out there who could use these organs to live, if my baby cannot use them to live then why do these other babies have to suffer still? I wanted so badly to feel peace with our decision to donate Eva's organs so that other families didn't have to say goodbye to their babes, that some sweet little baby would get to have our Eva's heart and she would live on in a sense. Now you tell me that this perfectly good heart has to die with her?
We were left to be alone for a bit again and to 'process' what we heard. We both just felt so....overwhelmed. Our minds were aching so much from holding the plate of suck, it just seemed impossible.
We met with lots of counselors and then met with another counselor who specialized in child grieving. That's right- we had to somehow tell our two children who were so excited to be adding a baby- that this baby is going to die. (Lets back up and add another 5 scoops of suck, for each kid)
We were given good information and a special book to read to the kids when we are ready, but we mainly just spent the time with the counselor crying. How were we going to bring our kids in and tell them this news? We couldn't take any more scooping's of suck! The child counselor brought the kids in and helped us explain -and by this I mean she did the talking as we silently wept.
Again that is another story for another day, but Corbi is too little to understand as much. Marley was able to sit and listen as she explained what was going on. She asked about what our babies name was (for some reason she said Ella, but she knew it was Eva- she was trying to be her silly self if a hard moment which we appreciated) and explained that Eva had an owie on her head and that right now mom is keeping her safe. But when the time comes and Eva is ready to be born, mommy wont be able to keep Eva's owie safe and she will die. (they told us to avoid saying to be with Jesus or go to Heaven so they don't blame and get mad at Jesus for taking their sister away). She talked to her about what the brain does and with the owie that Eva has, she will die when she is born.
This is a lot to have to bring in on ourselves, let alone or precious innocent 3 year old. Not only are we going through something, our children are too. Add on the scoops.
It was another long drive home after being up all night and spending 4 hours in with the doctor and counselors we stopped along the way for some food because we had forgotten that we are indeed human and needed food to survive.
We made some calls to start our grieving process (like I noted before, they advised us to tell people so we could start the grieving process) and it was hard to put out there that this is our reality. It isn't a dream, it is a nightmare we are living. We are going to have to say goodbye to this little girl we have been praying for. We won't get to see these milestone achievements like if she will walk or crawl earlier than the other two kids. We wont have a table setting of five. We are saying goodbye to a journey we were so excited for.
That night when we finally arrived home exhausted in all aspects, I asked for peace and comfort as I drifted into sleep and was welcomed back to that empty theater showing a black screen feeling my Saviors sweet comfort and love for me.
(This is a long read, and it has all my raw emotions on what went on during this day(s) )
I can still smell the way the radiologist room smelt, and the way it was a bit cold in the room- not too cold but enough to make my exposed belly a bit chilled.
February 2nd: We traveled the hour and a half to see our doctor for a first visit, also the anatomy scan. To us this was just a triple check to see if we were still right and the ultrasound was true. I mean we would have felt so silly after announcing that we were having a girl to have to turn around and say "psych, its a boy!". We had a plan to get things done that day prior to the appointment, TJ had to go take some tests for work and we had to get some shopping done while we were in town (We really could not waste the time and not do shopping- to all those who live a bit further from a 'town' understand ;) )
To us this was just a normal day, with this being my third I knew the routine and wasn't nervous because I have had two healthy kids so I didn't think anything could go wrong. Boy, do I wish I was wrong.
We first went in for a routine check up, meet our new doctor, catch up to speed. TJ had to take his tests so I was running solo with the kids in a small doctors room- boy was I just so annoyed that the DMV *had* to be closed for a lunch hour because I could have used a hand with these hooligans. They liked to touch everything, and there are many....objects to touch in a gynecology doctors office. Talk about wanting to crawl in a hole, luckily my doctor was super nice and understanding- it didn't even phase her! (I guess in her profession she is used to it a bit). Overall the appointment went really great and we had a separate appointment for the ultrasound, she informed us that she doesn't go into the ultrasounds like I have been used to. So we went out to the waiting room because we had an hour to kill before it was time to do the anatomy scan.
The kids were already done, being in the car all morning and not being able to really run around makes them go crazy! We found a pediatric wing that gave us some knock out drugs....TOTALLY kidding, but a girl could dream, right? No, we found the pediatric wing in the clinic and they had coloring tables which was about as good as the knock out drugs. We sat and we laughed with the kids and played a version of Simon Says with Skittles because coloring only could take up so much time. Seriously, trying to entertain two toddlers for an hour in a doctors office with no toys (flu season)....if you can manage this you will feel like you have won Ninja Warrior because it is....intense.
It was finally time to go see the radiologist and we had to wait a FEW more minutes. The kids found water to drink from (again, like Ninja warrior, we had to avoid this crazy obstacle of water everywhere and being kicked out for bringing two crazy kids- luckily not a lot of water was spilled but the kids sure did get there water intake in for the day!) We were called back and went to meet our radiologist. She was a sweet, quiet lady with short blond hair and glasses- she didn't look like the super warm person, but didn't seem totally cold either. Just another day another ultrasound to her. (She probably saw the two kids spilling water everywhere in tow and wasn't super excited about that- whatever)
She started the ultrasound with the cool gel that I wished was a bit warmer but I was too excited to see our baby to even care how cold it was. I wanted this radiologist to have a somewhat better day (maybe she was having a bad day and that is why she didn't greet us with the biggest smile ever? I can only assume but I wanted to make her smile and talk to us more) so we tried to play games like: "lets-guess-what-we-are-looking-at" and "is-this-the-leg?" We felt a sense of accomplishment when she smiled and started talking to us more, even laughed when Marley let out the manliest of burps ever (if you know Marley, she takes pride in this and in fact does have these loud belches that you swore were from a grown man- where does this even come from?) But things started taking a turn of events.
She started asking me what my due date was, like it didn't say in the chart she had and asked me who my doctor was- again, information she could easily check the chart for. She kept looking around and act like everything was normal and in a quiet yet nice voice and a faint smile said "I will be right back". My heart sunk. I have a mom friend who is a radiologist and I know that that didn't mean something good. I started to panic. "TJ something is wrong" "No its not" "It is, because she said she would be back" "Maybe she is tired of us talking trying to make her laugh" I know he was just trying to crack a joke but I knew that something was off. They don't up and leave because they have to go pee.
It seemed like forever while she was gone and it was so quiet in the room besides the noise and chaos from our two kids. But it was a different feeling in the room, I started shaking because I could feel the cold more and because I was scared. Shortly after the radiologist returned in the room but kind of stepped back and in came our doctor. Why would she be coming in when she said she doesn't do the ultrasounds? I knew we heard a heartbeat and I felt movement so, what else could be wrong?
She mentioned that she just wanted to double check what the radiologist had seen (What did she see, and why didn't she show us first?!?!? I was almost mad at the radiologist for hiding something, like I was being tattled on and our doctor had come in to discipline me). At this point I knew something was amiss but I was hoping that this radiologist was new or whatnot and that it wasn't anything. They put more gel on my belly which I didn't even feel but at the same time felt colder due to the shaking and pit-in-my-stomach feeling. They checked what they were looking for- it was her face.
Our doctor tried explaining what she was seeing, and honestly, I remember it sounding so gibberish. She was saying things like "skull", "fully formed", "didn't". Nothing was making sense! She said that our baby had A__________(it wasn't anencephaly but a different word for it). "Well, what does this mean?" "I am not going to sugar coat this, it means that your baby is not viable." Viable? I heard her heartbeat, I know she is not dead. Why are you telling me she isn't viable?
They asked us if we wanted the kids to be taken outside for a minute so we could talk some more. No I don't want to talk, what more is there to talk about? You told me my baby isn't viable! We reluctantly but willingly let the radiologist send them out to play with some friendly nurses, and our doctor sat on the bed. I sat up- this couldn't be good.
I don't remember everything she was saying, it was muted by my sobbing and shaking. She told us that when our baby is born she is not going to make it. She gave us some options, and got started on the information for the specialist. She told us that the ONLY maternal and fetal medicine doctor in the state was in Fargo. I had no idea where exactly Fargo was but I figured it couldn't be that far. Wrong. Its a 5 hour drive.....from there.....and we lived an hour and a half away from the doctor.
She gave us a minute to be together and went out, the radiologist was still in the room. I asked the question more than once because I wasn't understanding "is she in pain? Am I causing her to hurt?" She told us no and that she couldn't feel anything. This didn't make my decision any easier. Because I knew that if I were causing her pain I would do what it took to help her not hurt anymore. But instead this complicated my feelings even more. I repeated more questions that our doctor already answered but I needed to hear them again.
During those few minutes we just held each other in silence and tears. Our doctor came back in with two appointment slots for seeing the doctor in Fargo. One was for the next morning at 7 am or on Monday. There was no way I was going to wait all weekend to talk with this doctor who had better equipment to tell me that it was all a glitch and that they were wrong and had outdated old crap of equipment. Plus TJ started his new job on Monday. So we took the Friday morning appointment not knowing what more to even do, just sit there. We couldn't move.
My doctor, who I have felt so close to-with this only being our first visit with her. "I know we just met but I am a hugger and I feel like I need to hug you." She isn't much older than I am but I felt such a motherly tenderness in her embrace. And I sobbed some more.
I forgot how to move, what should I be doing right now? All I could do was be a blob on the bed and cry. But then my bladder reminded me it was full and had been full for some time. I managed to make it to the bathroom where I took one look at my face- lobster red and splotchy ( I wear my emotions very well) and sat and cried even more. This time it was the noisy sobbing; why in the world was this happening?
Something I want to always remember (and this is where our religion will come out): When we prayed for this baby we were not in any position to bring a baby into the world, just barely getting a job and going to school full time with me at home with the kids. It was a true test in our faith that if we listened to the Lord we would be blessed. TJ told me "this is still a test of our faith" I know this is a very private moment but its something I want to share because it is who Eva is. She has been our spiritual, trial-testing pregnancy from the start. We decided we still felt her name was to remain the same.
So we started our journey home, which was still so quiet (besides the blurring noise of the movie in the back-which we were so grateful for at that moment) and we sort of went into auto pilot mode. We didn't want to eat, I couldn't even think about food or water. All I could do was weep about the news we just received. We didn't make any phone calls or talk much. Besides, they told us that we needed to see the specialist to confirm what was going on, they could be totally wrong! During our drive home we did make a decision- we were given a few options and knew that the specialist would go over options the next morning. We didn't even mention them to each other but we both felt the same thing. I remember watching an episode of Private Practice (sister show of Grey's Anatomy). One of the characters (Amelia) has a baby with the same condition (I remembered it was something brain because she was a neurosurgeon and she had a baby without a brain) and she found a way to donate her boys organs. This was all I could keep replaying. But the thought still made me sad and weep. I didn't want to have to think about this, no mother should!
We took a brief stop to do a potty trip for us girls and when we got back in the car TJ was reading an article about a family in a similar situation, and they were able to donate their babies organs. We were quiet for a short time when we brought up the subject on what to do. Either way it wasn't any decision or option that we wanted- we wanted our baby to be healthy and to be able to live! We both thought to ourselves that the best way we could do some good, that this wouldn't be for nothing was to go to term and donate Eva's organs to help other babies. We didn't really discuss rather than just agree that this is the best way we felt.
Now, as hard as this decision, there was still the termination of pregnancy that was weighing my mind. But that is a different post for a different day. Like I mentioned , none of the options they gave us were ideal. We just wanted this to be a sick twisted hazing ritual to all newbies of North Dakota.
I felt better, as I was still sad, I started to feel more numb than sad. If I couldn't keep my baby, the least I could do was allow other moms to keep theirs. That somewhere out there Eva would still live on. To me that was a comfort; the heart that was inside Eva now could help save another baby and still be beating somewhere in the world, she would still live on and get to experience life in a sense. How badly I wanted her to live but I started to look at the bigger picture. My baby could save lots of babies from having to die. This could be Eva's mission!
My mom had been texting me that day with 'how was the appointment' and I wept each time but changed the subject with 'TJ passed all his tests!' and 'How was work?'. Just small talk because we didn't want to mention anything yet until we say a specialist. But it all took a turn when my mom called me- something I couldn't hide my sobs from. And it was the first time I actually said the words of the diagnosis, it was the first time it felt like this is real and not a dream.
(More religion) We spent the night quietly on the couch just 'watching' a show. Meaning the show was playing but I am not sure what all happened, we were trying to distract ourselves from reality. And for that time it felt really nice....to feel nothing. We were trying to get a hold of some priesthood holders to come over to give us a blessing. It was already so late at night and we had to get up in 3 hours to drive to Fargo. Without even asking questions I asked the only person that I knew in our ward and she gave me the appropriate number. We got a hold of him and without questions he came over within 20 minutes. This is a lot to ask for at 9:30 at night. I know it was a blessing in itself the willingness and speed to come over.
Now I don't want to share their identities because they shared some personal stories of their own and it is not my place to share those. But they had no clue or understanding of what they were walking into when we opened the door. But I will say it was a special moment that we knew that Heavenly Father was aware and listening to our hearts that he sent these two men.
I was hoping for a miracle, or something. I wanted to ask them to say that everything was okay and nothing was wrong. As I sat during my blessing I kept hoping to hear those words 'miracle' and 'healthy'. Any indication that there was nothing to worry about. What I did hear what that Heavenly Father loves me and he knows my pain. That I would feel His closeness. More words were said but nothing about this being a sick game and that we were to have a healthy baby. Why? If Heavenly Father truly loved me, why would he put me through this? Why do I have to feel this pain? I didn't want his comfort and closeness; the best way I could feel He really loved me is if he made a miracle happen and that our baby didn't have to die. I wasn't angry with God, but more hurt and alone than anything.
We were going to stay up that night since we needed to be on the road at 1 am. But both being emotionally drained we decided two hours of sleep would be good. We prepped the car with food for the trip and headed for bed. I felt that Heavenly Father answered one of my prayers because that night (or should I say nap) I felt like I was in a theater, watching a black screen, feeling no pain. But, I wasn't alone. Nobody in particular but I felt love.
The alarm went off way too soon and we somberly got the kids loaded up and headed out to Fargo. It was dark outside but the moon and stars were so vivid that it made the dark skies not so dark. We aimed to make small talk to keep our minds preoccupied and not think of the appointment that would come in a few hours. The kids didn't sleep so the sound of the movie going wasn't bad for any of us. It kept them busy but left us busy to our own minds as well.
When we entered Fargo I felt like there wasn't a glitch on the screen, that this all really was real and not a dream. BUT I still had that hope it was not real- that the radiologist and doctor were wrong.
We met with the one of the nurses, Erin, and the radiologist, Amber. They were both so sweet and kind, but I didn't feel like it felt.....overly done. Not like they were looking at us and saying they felt sorry for us. But more like we really care about you. And I had never met these ladies before but felt okay with them. I hope you never have to meet them at the same time in their workplace; I could never wish that upon my worst enemy. Being there meant something was utterly wrong.
I know radiologists aren't supposed to mention much to you because they are not the doctor, but I decided to ask anyway. I asked her if it really was bad and not by some miracle our baby was perfectly fine. She told me that it didn't look good, and that there are some things concerning and unfortunately this was all real. I hated hearing it but I appreciated her honesty.
Good news is they let me pee before they started so I didn't have to sit and hold anything while we waited for the doctor to come in.
It was like an a crowd of people came in to our room (it was only three: Amber, Erin, and Dr. Van Eerden) and they had some nurses take our kids out- more signs that this was real and that something is really wrong. He started out telling us what we already knew, that Eva really did have anencephaly. He discussed further on what that meant and did a 'live' ultrasound explanation of what exactly we were seeing. I kept asking about Eva's heart, and if it was healthy. It was hard for me to say but to know if she had a healthy heart was really important because that meant it could help save another baby somewhere. Then came the other news.
This wasn't the only thing that was wrong. She also had a cleft palate or lip, but didn't know the severity of it because it was in ultrasound. Okay, I can live with cleft palate....its not the end of the world, just something physical. He then kept adding more things that were wrong. It felt like we had already had a huge plateful of suck and he kept adding more spoonfuls to it, where it felt like we couldn't hold the plate any longer because it was so heavy.
He told us that during his viewing he did not see any fluid in the stomach, which could indicate that there is an esophageal issue and she is unable to swallow at all. 2 scoops of suck.
He then mentioned that because of the blood vessels to and from the placenta to the baby there is a possibility that she may have down syndrome or another genetic issue. 4 more scoops of suck.
This could have happened that all these issues combined caused this genetic issue to accrue or it was something that TJ and I caused with our genetic make-up. 10 more scoops of suck.
He asked us if we had any questions. "Can we discuss about organ donation and how that works?" "Unfortunately, we do not accept organ donations from babies with anencephaly". Lets just back in a semi load of suck and dump it on us.
There was more talking about reasons why they wont accept our little Eva's organs and it also took in a factor that they didn't know what exact genetic issue she had, and they went into further discussing the testing that would need to be done. I just couldn't wrap my head around it. There are babies out there who could use these organs to live, if my baby cannot use them to live then why do these other babies have to suffer still? I wanted so badly to feel peace with our decision to donate Eva's organs so that other families didn't have to say goodbye to their babes, that some sweet little baby would get to have our Eva's heart and she would live on in a sense. Now you tell me that this perfectly good heart has to die with her?
We were left to be alone for a bit again and to 'process' what we heard. We both just felt so....overwhelmed. Our minds were aching so much from holding the plate of suck, it just seemed impossible.
We met with lots of counselors and then met with another counselor who specialized in child grieving. That's right- we had to somehow tell our two children who were so excited to be adding a baby- that this baby is going to die. (Lets back up and add another 5 scoops of suck, for each kid)
We were given good information and a special book to read to the kids when we are ready, but we mainly just spent the time with the counselor crying. How were we going to bring our kids in and tell them this news? We couldn't take any more scooping's of suck! The child counselor brought the kids in and helped us explain -and by this I mean she did the talking as we silently wept.
Again that is another story for another day, but Corbi is too little to understand as much. Marley was able to sit and listen as she explained what was going on. She asked about what our babies name was (for some reason she said Ella, but she knew it was Eva- she was trying to be her silly self if a hard moment which we appreciated) and explained that Eva had an owie on her head and that right now mom is keeping her safe. But when the time comes and Eva is ready to be born, mommy wont be able to keep Eva's owie safe and she will die. (they told us to avoid saying to be with Jesus or go to Heaven so they don't blame and get mad at Jesus for taking their sister away). She talked to her about what the brain does and with the owie that Eva has, she will die when she is born.
This is a lot to have to bring in on ourselves, let alone or precious innocent 3 year old. Not only are we going through something, our children are too. Add on the scoops.
It was another long drive home after being up all night and spending 4 hours in with the doctor and counselors we stopped along the way for some food because we had forgotten that we are indeed human and needed food to survive.
We made some calls to start our grieving process (like I noted before, they advised us to tell people so we could start the grieving process) and it was hard to put out there that this is our reality. It isn't a dream, it is a nightmare we are living. We are going to have to say goodbye to this little girl we have been praying for. We won't get to see these milestone achievements like if she will walk or crawl earlier than the other two kids. We wont have a table setting of five. We are saying goodbye to a journey we were so excited for.
That night when we finally arrived home exhausted in all aspects, I asked for peace and comfort as I drifted into sleep and was welcomed back to that empty theater showing a black screen feeling my Saviors sweet comfort and love for me.
Sunday, February 19, 2017
Our Story
As most of you know we are currently expecting our third baby, and we are ever so lucky that it is a girl! I am not one to blast on social media our babies name until they decide to come into the world, but this brings a different circumstance. We have decided long before we found out the gender that if it would be a girl we would give her the name Eva Carolyn. Eva, after my maternal great-grandma (whom I am also named after (Eva May)). Carolyn after TJ's maternal grandma Carol Ann (with her permission and blessing we have combined the first and middle name to have Carolyn). We were so thrilled when we went to the ultrasound place to confirm our intuition that this baby was indeed a girl!
Now, as happy and excited we are to be having another baby and another girl; we are also very heartbroken to share this news. We have been advised by our doctors to share this information with others so we can start the grieving process. I have found my outlet is writing and hence the reason for this blog.
It is with a sad heart that we tell you:
Eva has anencephaly. This is also a severe form of spina bifida. Basically what we know is something happened during the early stages of pregnancy that caused her brain to not fully develop. Her brain along with her skull have formed but not correctly. With this information and nothing to do to fix it- our sweet Eva is not going to live for more than a few hours if we are lucky
There are other issues that we have found with meeting with specialists that confirm this diagnosis among others. At this point it doesn't matter to me what else is 'wrong' with Eva; because at the end of the day nothing else matters. We will be saying goodbye to our baby.
I will leave with a brief description of what Anencephaly is. I ask if you are to google just read the information and skip looking at what google posts for images, they always put the worst up.
Anencephaly is the absence of a major portion of the brain, skull, and scalp that occurs during embryonic development.[1] It is a cephalic disorder that results from a neural tube defect that occurs when the rostral (head) end of the neural tube fails to close, usually between the 23rd and 26th day following conception.[2] Strictly speaking, the Greek term translates as "no in-head" (that is, totally lacking the inside part of the head, i.e. the brain), but it is accepted that children born with this disorder usually only lack a telencephalon,[3] the largest part of the brain consisting mainly of the cerebral hemispheres, including the neocortex, which is responsible for cognition. The remaining structure is usually covered only by a thin layer of membrane— skin, bone, meninges, etc. are all lacking.[4] With very few exceptions,[5][6] infants with this disorder do not survive longer than a few hours or possibly days after their birth.
The National Institute of Neurological Disorders and Stroke (NINDS) describes the presentation of this condition as follows: "A baby born with anencephaly is usually blind, deaf, unaware of its surroundings and unable to feel pain. Although some individuals with anencephaly may be born with a main brain stem, the lack of a functioning cerebrum permanently rules out the possibility of ever gaining awareness of their surroundings. Reflex actions such as breathing and responses to sound or touch may occur."[4]
At this time we are still processing the hard news, and we do not have answers- all we know is we are going to have to endure the hardest thing we have had to go through. With this being said, we would appreciate the love and support and prayers (if that is your gig) and good thoughts as we are figuring out what our next steps will be. I will continue to update this blog with our story, thoughts, feelings and how we are doing.
Though Eva's life will be short here on Earth, she will always be in our hearts.
Once again, we thank you for your thoughts, prayers, support and love. We will need them in these hard weeks, months, and years to come.
Thank you
TJ and Sadee Carney
Now, as happy and excited we are to be having another baby and another girl; we are also very heartbroken to share this news. We have been advised by our doctors to share this information with others so we can start the grieving process. I have found my outlet is writing and hence the reason for this blog.
It is with a sad heart that we tell you:
Eva has anencephaly. This is also a severe form of spina bifida. Basically what we know is something happened during the early stages of pregnancy that caused her brain to not fully develop. Her brain along with her skull have formed but not correctly. With this information and nothing to do to fix it- our sweet Eva is not going to live for more than a few hours if we are lucky
There are other issues that we have found with meeting with specialists that confirm this diagnosis among others. At this point it doesn't matter to me what else is 'wrong' with Eva; because at the end of the day nothing else matters. We will be saying goodbye to our baby.
I will leave with a brief description of what Anencephaly is. I ask if you are to google just read the information and skip looking at what google posts for images, they always put the worst up.
Anencephaly is the absence of a major portion of the brain, skull, and scalp that occurs during embryonic development.[1] It is a cephalic disorder that results from a neural tube defect that occurs when the rostral (head) end of the neural tube fails to close, usually between the 23rd and 26th day following conception.[2] Strictly speaking, the Greek term translates as "no in-head" (that is, totally lacking the inside part of the head, i.e. the brain), but it is accepted that children born with this disorder usually only lack a telencephalon,[3] the largest part of the brain consisting mainly of the cerebral hemispheres, including the neocortex, which is responsible for cognition. The remaining structure is usually covered only by a thin layer of membrane— skin, bone, meninges, etc. are all lacking.[4] With very few exceptions,[5][6] infants with this disorder do not survive longer than a few hours or possibly days after their birth.
The National Institute of Neurological Disorders and Stroke (NINDS) describes the presentation of this condition as follows: "A baby born with anencephaly is usually blind, deaf, unaware of its surroundings and unable to feel pain. Although some individuals with anencephaly may be born with a main brain stem, the lack of a functioning cerebrum permanently rules out the possibility of ever gaining awareness of their surroundings. Reflex actions such as breathing and responses to sound or touch may occur."[4]
The cause of anencephaly is disputed.
-https://en.wikipedia.org/wiki/Anencephaly
At this time we are still processing the hard news, and we do not have answers- all we know is we are going to have to endure the hardest thing we have had to go through. With this being said, we would appreciate the love and support and prayers (if that is your gig) and good thoughts as we are figuring out what our next steps will be. I will continue to update this blog with our story, thoughts, feelings and how we are doing.
Though Eva's life will be short here on Earth, she will always be in our hearts.
Once again, we thank you for your thoughts, prayers, support and love. We will need them in these hard weeks, months, and years to come.
Thank you
TJ and Sadee Carney
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