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.

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 brainskull, 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.


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