Thoughts From a Somewhat Healed Grieving Mother

Often people assume that when you lose a child, that is what you are losing. Nothing could be farther from the truth. When I lost Harper, I lost her whole life. I lost the sweet baby cuddles, the breastfeeding bond, her first giggle, her first step.
Going to school for the first time, losing that first tooth, the kisses before she walks out the door, graduation, her wedding, grandchildren. I lost all of it. Every single beautiful moment, and even the not so beautiful ones, are gone in the blink of an eye. She is forever frozen in my memory as that tiny preemie baby hooked up on machines.

And that's just what I lost. What about what her twin sister lost? The best friend, by her side every step of the way. Someone to understand you, that is going through the same stages with you. They were identical, so they were literally two parts of one whole. One egg split in half. What emptiness may she feel as she gets older? She is already a classic "Twinless Twin", in that she has to have someone with her at all times, she doesn't walk across the living room by herself, she grabs my hand or her sister's hand and walks with us. It is in her very makeup to not ever be alone. And now she has to do without that companion, that person who gets you because they have had all of the same experiences as you.

I would not understand the extent of her loss, except for the fact that my mother is an identical twin. Her and my Aunt are connected in a way that nobody is able to explain. They feel each others pain, they love each other absolutely unconditionally. I dread the day that one of them passes, because I have no idea how the other will keep going.

What a wonderful gift that is, and what a horrible thing for it to be ripped away before they even get to enjoy it. Adaline and Harper were already like the Ying and Yang when I was pregnant with them. Even when Adaline was being extremely deprived from the placenta and had no bladder, she was always the feisty one. She would kick and flip and get really worked up when the nurse put the monitors on my stomach. Harper was just chill, shed flip around a little bit, give me a few kicks, but never with the craziness of Addy. We have several ultrasound pictures of them kissing, and often it looked like Harper was patting Addy on the head, like she was already trying to calm her down!

So please keep this in mind the next time you ask me if I'm "Okay now". The answer is no. I never will be. Because every single moment I am missing something. Every time Addy is in my lap I wish I was seeing double, when we cuddle up at night there should be twice the snuggles.

The biggest jolt for me after losing Harper was how the world kept going. I remember around 3 days after she passed checking my Facebook. A couple people were on vacation, some had a birthday party, but all were still living their life like nothing had happened. I was like how? How is the world still going when my baby is dead? How does everything just keep on like nothing ever happened? Like the worst thing I could possibly imagined had not just happened?

But that is way it works. The world keeps going. I have people tell me all the time "I don't know how you do it.". I promise you I have no special secret. I just. keep. going. My oldest daughter still had to go to school, have help with homework, have clean clothes to wear. My middle still needed breakfast made in the morning, attention through the day, help with her ABCs. Adaline was still in the NICU and needed me. There was no possible way for me to just curl up in the corner and die like I wanted to.

So I went through the motions, I did everything that I was supposed to, maybe not as well as I used to, or with the same enthusiasm, but at least they got done. When Addy came home from the hospital I followed instructions, took care of her and watched her growth take off. When it came apparent it was time for me to make some money again I got a job. At Christmas I made cookies and wrapped presents. All the way until this May, a year and three months after Harper passed, I went through the motions.

Then all the sudden in May, I woke up. Things started to mean something again. I did stuff because I cared about it rather that just going through the motions. I realized how I had skated by in motherhood since Harper passed, and I realized how much I had missed. My memories of Adaline's first year are foggy and honestly I do not remember a lot. Arianna would be starting Kindergarten in the fall, and how had that happened, the last time I had really paid attention she was 3 1/2!

Oh the change in my children when they realized they had me back! When I was "zoned out" they older two had gotten into a habit of watching videos on the tablet in their room pretty much all night. All of the sudden I was being bombarded as soon as I got in the door, with stories of their days and requests to do this or that.

So yes, I am "better", but do not mistake that for healed. There is a gaping hole in my heart, and some days that hole hurts so bad it takes everything I have in me to get out of the bed in the morning, but that is just the way it is going to be, maybe forever.

Intro

Welcome to my blog!

A little bit about me and mine before I get into the nitty gritty stuff!

My name is Katie, I live in Weaverville, North Carolina with my husband, Matt, and our three children: Hailie is 10, Arianna is 5, and Adaline is 22 months. We also have Harper Grace, who is Adaline's twin, that is with us in spirit only.

This blog is going to be about the things that I have a passion for in my life: pretty much my family, and everything related to them.

I also wanted to make this blog to speak of things without having to hide my grief. Yes, it's still there. No, it will never go away. I am still finding ways to cope, and I want to talk openly about it, which I think could also be therapeutic. Sharing our journey with TTTS is important as well, it is possible Adaline is here today because I did not trust the doctors, and instead did my own research (mainly blogs, there is not a whole lot of official info out there).

I encourage you, if your babies have been diagnosed with TTTS, you can email me at hailiesmom515@gmail.com, and please do, I want to help you like people helped me!

The Start of Our TTTS Journey

This is going to be a long starter post, but I feel to record our journey accurately I have to start from the first. So to start, an introduction:

 I'm Katie, 27 years old and married to an amazing husband and father named Matt. We live in Weaverville, NC with our two beautiful children: Arianna who is 3 1/2, and Hailie who is 8.

 We started trying to get pregnant again over a year ago. We tried for around six months with no luck until some back and nerve issues steimed us for 3 months, then we were back to trying.

Finally, on August 21st 2015 we got a positive pregnancy test! We were so incredibly thrilled, but cautious as well. We had a loss at almost 14 weeks when Hailie was a baby, and when I was pregnant with Arianna I had low levels and had to take progesterone.

I went in September 2nd to have a pregnancy confirmation ultrasound, and for them to take my blood for the first part of testing my levels. The appointment was a mess, almost all the doctors were either gone or at surgery. I had to wait a good 2 hours to go back for my ultrasound, and when I did it was an ultrasound tech who was used to doing anatomy ultrasounds, because at this office the doctors usually do the early ultrasound themselves. She could not find a heartbeat, but we saw a small baby and it was still early, so I wasn't too worried.

Before I go on I should say that this pregnancy felt different from the very first. I am usually only a little sick feeling and very tired at the first. This time, I was straight up getting sick every single day, and truly felt like I had the flu. We were relieved when, after I went back 2 days later just for another blood withdrawal to compare how my levels were increasing, I got a phone call saying my levels were perfect.

I went back for another ultrasound a week after the first one, with hopes of hearing a heartbeat. It's an understatement to say I was blown away when right away two little circles popped up on the screen. It was twins!! I was in complete shock, and Matt thought I was playing a joke on him until I sent him the ultrasound. My first thoughts were excitement, and then moved quickly to worrying about how in the world am I going to afford two at once? How can I even care for two at once? Those fears were quickly replaced when I started to do research on the type of twins we had. They are Mono/Di, which means they are identical, they share a placenta, but have a thin membrane in between them, and have separate amniotic sacs.

The first thing I was worried about was vanishing twin syndrome. That is where one twin essentially vanishes and is absorbed. Every ultrasound we were so pleasantly surprised to find both twins still there and thriving!

So when we went for our first Maternal Fetal Medicine Specialist appointment, the biggest thing we were worried about was whether we were going to find out the gender of our sweet things or not. At this point I was one day shy of 16 weeks.

The ultrasound tech had a hard time finding the membrane, but besides that everything seemed to be fine. Then she got really serious and didn't say anything for a minute, flipped the machine off, and said the doctor will be in to talk to you in a minute.

It turns out our little babies had borderline/stage one Twin-to-twin transfusion syndrome, or TTTS. Baby A had too much fluid, at 9.something, and baby B had too little at 2. The reason the tech had a hard time finding the membrane is that baby B is pretty much suspended in it like a teardrop, with a small amount of fluid above its head. She said that most likely we would need to go to Charlotte and have the laser surgery that severs the connections where the babies are sharing, giving them essentially separate placentas. Though we were in the beginnings, she said most of the time this progresses and it is pretty much inevitable that the surgery will be necessary. If we do nothing, the babies will most likely die.

We were devastated of course. I had done some research on TTTS, but it was not something I assumed was going to happen to us. She set me up with an appointment to come back in Friday for a recheck, as it can progress rapidly, and said she would get in touch with Charlotte.

I got a call in the middle of the week that Charlotte did not have any openings the next week, and they were hesitant to even see me so early in the pregnancy and being borderline/stage one. So she contacted Cincinnati, who said they are comfortable doing the surgery this early in the pregnancy, and did have appointments. We waited until the scan Friday to make an actual appointment at Cincinnati.

So we had our scan Friday November 20th, which unfortunately showed some progression. Baby B had a small amount of bladder fluid left on Tuesday, and now had none. There was also a small lack of brain fluid (i believe that is what it is called). Due to the progression in just two days, she said it was time to go to Cincinnati. After many phone calls from our MFM's office as well as Cincinnati, we finally got everything settled.

We are driving the 6 hours up on Monday night for our appointment on Tuesday. They said I will have testing in the morning, including an MRI, Fetal Echocardiagram, and intensive ultrasound, then in the afternoon we will sit down with the doctors and discuss our options. If it has progressed enough to have surgery, we will have it on Wednesday, I will have to stay in the hospital for a day, and then we will have to stay in Cincinnati for 5 days after that for monitoring.

I also want to thank Mary Slaman at the TTTS Foundation. This woman is amazing! It felt like she knew more about this than the doctors did. She was able to direct me to articles citing the importance of bed rest and nutrition to help this condition that had not been told to me by the doctors. She also arranged to reserve and pay for the FULL duration of our stay at the Marriott near the hospital, saving us so much money! This foundation is truly a lifesaver and what they are doing is making it possible for me to get the care me and the babies need and just focus on that, and not all the financial craziness. I will update Tuesday!

Halloween Adventures

We are huge Halloween people around here. No joke, we decorate October 1st (September when I can get away with it!). We do crafts, adventures, ect. So I wanted to share some of our fun times this last month!

Craft and baking time! We tried to do a craft and treat everyday for 21 days. We didn't quite hit that, but what we did do was a blast. I cannot wait until next year when Arianna can be a little more active in the craft making process.

 

Apple Cinnamon Mummies

Handprint Bats

Witch Hats

Mummy Balls

Cupcakes!

 

We also visited the Hickory Nut Gap Farm for the pumpkin patch like we always do. Honestly, trying to get the pumpkin patch thing done was a nightmare this year! It was still really hot, so I got the girls these cute coordinating jean dresses to wear. We got all pretty and drove almost the whole 30 minutes there, just to have the sky open up, and it POURED rain! We had to turn around and go back home, where it had never even rained. The next weekend we finally made it there, and it was warm at our house, but out there it was freezing! We had to rush because both of the girls had bare legs :( The farm was awesome though, they had added a whole new area, a barn, where they had baby cow's and these neat tricycles to ride. Arianna was pretty grumpy, so we didn't stay for very long, but I got some decent pictures!

 

 

 

 



Yesterday was Halloween! We got all festive (For some reason I didn't get a picture of Hailie in her school Halloween outfit).

 

 

Made a super yummy mummy pizza for dinner, with Halloween cookie cake for dessert.

 

 Then we got ready for trick or treating! Hailie wanted to be a zombie after watching Paranorman, but she wanted to keep it girly, so zombie Cinderella it was!

                 My booutiful ghost!  My first ever homemade Halloween costume, I was so proud!

We stopped by Mamaw and Papaw's on the way out for some treats and loves.

Then we went to downtown Weaverville to trick or treat. It was such a blast! The streets were so full it looked like a movie scene. We did the trick or treating thing for about an hour, then we went to DQ to visit aunt Ashley and get some awesome over filled blizzard's. Overall it was an awesome night, and both kids acted sooo good!

Halloween has always been so much fun for me, I love starting and continuing traditions with my little family!