365 Days Later

What a year it has been! This year has been full of blessings and hardships. Dan and I were just talking the other night and I told him like I have told everyone, I feel like this has been the longest year of my life and in the next breath, I can't believe how quickly time has passed.

Looking back I am going to highlight some of the good and bad points of this past year:

Sophie's birth
Transported to Toledo Children's Hospital for 6 days
Meeting her Grammie for the first time
Coming Home
Sophie being diagnosed with Hirschsprung's Disease
Dr. Butto finding not 1 but 2 holes in Sophie's heart as well as Pulmonic Stenosis.
Endorectal pull-thru surgery when Sophie was just 2.5 month old. It was the day after the 2 year birthday day of her twin brother's. Talk about an uneasy feeling having her go into surgery!
Training Sophie's anus to work properly
4 day stay over the 4th of July at Toledo Children's Hospital because Sophie stopped eating and she was backed up with gas.
Sophie rolled over from belly to back for the first time
Doctor Appointments in Toledo every month
Happy Birthday to me!
Sophie staying overnight for the first time with Nana and Papa
Football Season for Shane
Heart Surgery at 4.5 months- the longest 6 hours of my life...literally
We got MARRIED
Sophie started being awake more and smiling
PT and OT once a week
Shane's 11th Birthday!!
MRI needed for her vision problems - U of M was unsuccessful to say the least
Physical Medicine doctor highly recommended the MRI
MRI rescheduled in Toledo
2 doctor's urged us to have genetic testing done on Sophie because of everything that she had going on. They believed it was related to some sort of syndrome.
Sophie visits U of M for genetic testing. Mowat-Wilson was what she was being tested for.
Thanksgiving...I wasn't feeling very thankful. My husband had to tell me to be thankful for the small things.
Christmas
New Year's
Sophie was diagnosed with Mowat-Wilson Syndrome on January 2, 2012 at 10:31 am.
At that point my world ended and it is starting to start up again!
Sophie getting stronger each day
Another heart surgery needed but they are waiting for her to reach 20lbs.
Sophie laughing and smiling, and giggling daily
Sophie rolled over for the first time from back to front at her heart doctor appointment the day before her 1st Birthday!!!
HAPPY 1st BIRTHDAY  SOPHIE!!!!!!!!!!!!!!!!!

Whew! That is one heck of a year. What I am learning through this journey is that I have to take things one day at a time or even one moment at a time when a day seems too long! We are so blessed beyond measure and I tell myself that daily. Don't get me wrong, all of this sucks but it is starting to get a little less sucky!

What Do You Say?

As many of my friends and family know, I will always find something to relate back to the lyrics of a song that I like or that I have heard along the way. I have also been known to, on occasion, ok...often break out in to random songs.  As you read this please keep in mind this course:

"What do you say in a moment like this

When you can't find the words ooh to tell it like it is?

Just close your eyes and let your heart lead the way

Oh, what do you say?

Sometimes you gotta listen to the silence

And give yourself time to think."

Shane, Sophie and I were on our way back from my soon to be Sister-In Laws bridal shower when Shane seemed to be more silent that he normally is. I asked what was on his mind, a question that I like to ask every now and then. He said nothing, of course, and I asked, Are you sure? Then it started. 

Here is how our conversation went:

Shane: "What kind of job do you think Sophie will have when she grows up?"

Me: Silence

Shane: Asked me again

Me: "Shane, I am not sure you fully understand what is going on with your sister. Sophie will never be able to work, sweetie. She isn't going to have the mental capabilities to do it and your dad and I will take care of her the rest of our lives."

The look on his face was heartbreaking!

Shane: "You mean she is always going to live with you?"

Me: "Yes, honey, she will never be able to take care of herself."

Shane was quiet for a few minutes and I was fighting back tears. Not only was I trying to process everything that Sophie is going through, but everything that my son has to go through as a result of his sister not being what society perceives as "normal." 

What seemed like forever was only a few minutes when Shane piped up again and this time, I wasn't ready for what he had to say.

Shane had a tone to his voice, he was angry, he was hurt and he was sad.

Shane: " I had dreams for my sister. I dreamed she would have a great job. Now that's not going to happen. I dreamed she would drive a nice car. That's not going to happen. I dreamed she would get married and have kids, that's not going to happen. I dreamed she would be able to talk to me, who knows if that will happen. I dreamed she would play with me, I hope that happens."

I was in tears. I couldn't speak. Sophie was in the back seat sleeping and Shane was sitting next to me crying as well. 

All I could tell Shane was that it sucks, it isn't fair, and we are going to do the best we can. I said, I know Sophie will play with you. Then, I reached over and held his hand. We didn't speak, we just cried and I just drove.

So, what do you say? 

All I know is that Sophie's condition just doesn't affect her, Dan and I. It affects every single member of our family. Shane is an amazing child who feels deeply, loves deeply, and honestly cares about people. He loves his sister so much that it hurts me to see his dreams for her crushed. 

So, in our journey together as a family, as friends, I ask that once in a while you don't just ask how Sophie is doing, but also remember Shane in your thoughts and prayers. He needs them.

3 Steps Forward...2 Steps Back

With the passing of my cousin's baby girl, Sophia Lynn, I am brought back to the reality that I too still feel the same pain that Michelle is going to be feeling, either now or later on down the road. Grief hits us like a ton of bricks and I honestly believe that it is even worse when it is someone young, someone who hasn't had a chance to start their lives.

Going through everything with Sophie also makes me grieve the loss of Denton and Quinton again. I knew I wasn't over it, as I will never be, but I had developed some good coping skills, I had worked through my grief, I was in a good place, and now I feel like that I am back at the beginning of my grief journey. Not at the beginning as I am in despair, crying everyday, but that I am constantly reminded that my two twin boys are not here and they never will be. That life is here today, gone tomorrow.

In the process of grieving Denton and Quinton all over again, I am also grieving the death of the dreams I had for Sophie. Everything that she would grow to be, keeping her secrets, hearing the words I love you or mommy. The things that before Sophie, I would have taken for granted.

As I am walking step by step through this journey I am reminded that I do have blessings to be thankful for. even though the darkness is so much darker that the sunshine at this point in my life, I do know that we are blessed beyond measure.

Some days it takes everything I have for my feet to hit the floor in the morning. Some days it is like nothing has ever happened in our lives. I am learning to take things moment by moment. I was at a funeral last year when the Pastor said take things a moment at a time because sometimes a day is just too long. That statement resonated with me and I am learning to take the good moments throughout the day along with the bad ones.

2%

If someone were to tell you that there were only 170 people in the WORLD that had a rare genetic condition, what do you think would be your chances of having it or having a child with it?  I can answer that for you...there is a 2% chance of your child having this condition.

As you can imagine Sophie has had many doctor appointments in Toledo as well as in Ann Arbor. I am very pleased with both places, with the exception of an isolated incident that took place at U of M. During these different visits I was approached two different times, by two different doctors asking if we have had genetic testing done on Sophie. Of course my response was no. Why would we do that. Dan and I were under idea that once we had the HD and heart issues taken care of, Sophie would get back on track and start meeting her developmental milestones. Boy were we wrong!

On November 23rd, 2011 I took Little Miss to see Dr. Hannibal at the U. Dr. Hannibal is a geneticist. Once we arrived he started asking questions, taking pictures, examining Sophie, and he kept saying, "if it is what I think it is..." I stopped him and asked "Can you please tell me what you think it is?" Dr. Hannibal stopped what he was doing, looked me straight in the eye and said he truly believed Sophie had Mowat-Wilson Syndrome. Mowat What? Exactly, those were my thoughts. With all of my research that I had done preparing for this appointment, this is one syndrome that I had never heard of. I kept my composure for a while. I didn't want to breakdown in front of him. I didn't want Dr. Hannibal to see how scared I was. So, I sucked it up. Literally, I sucked in air through my nose so I wouldn't cry. Then it happened. I opened my mouth to ask a question and my voice cracks. I automatically apologize as if I have done something wrong. Dr. Hannibal actually told me he was surprised that  had kept it together that long. I expressed to him that I have had 2.5 years of practice.

Dr. Hannibal sent Sophie and I back out in the waiting area so I could call the insurance company to confirm that the genetic tests, which totaled over $23,000, would be covered. Praise the good Lord they were. Sophie had her blood drawn on November 28th and it was sent to Chicago to separate the DNA. I was told it would take 4 - 6 weeks before we would hear anything.

During that 4 - 6 weeks I honestly believed my daughter did have MWS. There wasn't an ounce of faith left in me to believe anything different. I started the grieving process for my daughter. I became, and still am angry. I am angry that this was happening. The only thing I asked God for was a healthy baby and He decided I didn't get to have that. Everyday for 6 weeks I carried my phone with me everywhere. I even slept with it next to my bed as if they would call in the middle of the night. I am laughing at myself too!

On January 2, 2012 I was driving the company vehicle to Jackson to make some sales calls. It had been 6 weeks and 1 day. My phone rang at 10:34 and I saw the 743 #. I knew it was the U. I took a deep breath and answered. Dr. Hannibal asked me how I was, like he really needed to ask that question. I said fine. We all know what fine means. He said he received the results back and asked if I really wanted them over the phone. I said, absolutely. Dr. Hannibal said that Sophie didn't have a mutation of the ZEB2 gene but she had a deletion of that gene which confirmed his diagnosis of Mowat-Wilson Syndrome. At that moment my world stopped. It is one thing to believe it in your heart, but it is something completely different to have it confirmed. It all became even more real.

After I received the call I went and picked Sophie up from Auntie Amy Jo's house. Sophie was spending the say with her since her sitter's son was sick. Sophie and I went home and I had to break my husband's heart by telling him my fears were confirmed. Dan and I handle things in two completely different ways. Dan doesn't deal with it until he knows for certain. I handle them at the first sign there might be an issue. I would rather prepare for the worst. 

In one phone call our entire lives changed forever. I have had people tell me it is ok, that it doesn't change anything, we still love her. I have had people tell me that God is in control and He will take care of her, that Dan and I were chosen to be her parents because He knew we would love and take care of her. As great as all of that sounds, I am going to be completely raw here, it is a load of BS.

1st...nothing about this is OK. ABSOLUTELY nothing.

2nd...you can't honestly believe that nothing changes. EVERYTHING changed...EVERYTHING. 

3rd...Yes, God can heal her, but right now, in this moment, my faith is running slim to none. God didn't save my boys, why should I expect it would be any different with my daughter?

4th...I know you are trying to make us feel better, but nothing will.

At this point I am asking my family and friends to be patient with us. We are working through some pretty tough stuff right now in our lives and it is only going to get harder before we will see the light on the horizon. Our lives are forever changed.

I am grieving the loss of my daughter. Not in the physical, but in the emotional and mental sense. My daughter may never be able to tell me she loves me. I may never hear those words from her. I may never hear mom, or dad, or I'm in pain. I will be lucky to to hear those words. In the 5% lucky. I have deep, deep pain. Please, be patient.

I have copied and pasted a little bit on MWS. You can find more at mowatwilson.org

"Mowat-Wilson syndrome is a genetic condition that affects many parts of the body. Major signs of this disorder frequently include distinctive facial features, intellectual disability, delayed development, an intestinal disorder called Hirschsprung disease, and other birth defects. Mowat-Wilson syndrome is often associated with an unusually small head (microcephaly), structural brain abnormalities, and intellectual disability ranging from moderate to severe. Speech is absent or severely impaired, and affected people may learn to speak only a few words. Many people with this condition can understand others' speech, however, and some use sign language to communicate. If speech develops, it is delayed until mid-childhood or later. Children with Mowat-Wilson syndrome also have delayed development of motor skills such as sitting, standing, and walking."

She's Truly a Miracle

It was a dinner date that I was having with my high school bff and we were enjoying an adult beverage. I had one PERFECT margarita and I felt like I had been demolished by a Mac truck. Something inside of me sparked up and I wondered...could I really be pregnant? I had only been off of birth control for one month, the month of July. During the month of July I had a 3 week battle with poison ivy...and I lost. I was at the doctor three different times and I had taken a steroid shot and pills. He had asked me if there was any way I could be pregnant. My reply...um, no! Little did I know, we conceived Little Miss, Jellybean, Baby Girl Stegg, Loomis (all nicknames given to her before her arrival by family and friends) on or around July 22. I left the dinner date with Sammie Jo and went to CVS. I purchased a pack of three pregnancy tests. I went home, talked with Dan and took the test the next morning, August 7th, 2010. 

We all know how that test turned out! I had a great pregnancy, I flirted with having gestational diabetes but never went all the way! I was able to see Sophie several times through the ultrasounds. I even had my dad come to one with me. What a great memory we share together! Towards the end I had extra fluid and I was induced 1.5 weeks early. In reality, it isn't early at all! 

I was in labor, from start to finish, for 10 hours with only 21 minutes of pushing. Sophie Marie Stegg was born at 6:21 PM on March 31st, 2010. The first thing I asked if she was really a girl. One could say I was a little skeptical!

I tried breastfeeding Sophie and she wouldn't eat. The nurses all said that was normal. They took her to the nursery so I could sleep that night and the next morning my favorite nurse, Nurse Linda, came in and told me Sophie's sugar dropped a little so they had to give her some formula from a medicine dropper. The pediatrician on call stopped in and noticed that Sophie had a heart murmur. He said that it is something pretty common and not to be alarmed. So, I wasn't. Nurse Linda came in and took Sophie again to check her blood sugar and while they had  her she wanted to do an Xray because her belly was a little big. Sophie had not yet passed her first BM either.

I remember it like it was yesterday. I was sitting on the couch that converted in to a bed just starting to use the breast pump. Nurse Linda walked in and said that she had bad news. She said that everything was going to get scary at first but then it would be ok, that Sophie would be ok. Linda proceed to tell me that Sophie had an intestinal blockage and that Toledo Children's Hospital was already on their way. Sophie wasn't even 24 hours old and she was looking at her first surgery.  

I called Dan, he was picking Shane up from school, and told him that Sophie was being transferred and was going to need surgery. Dan and Shane came  up to the hospital right away and we were able to have some time with her before she left. Sophie was whisked away. Dan and I were able to find a sitter for Shane and our dogs and we were off to Toledo. Thank God for Amy Jo! She arrived at the hospital before we did and she had all of the information we needed in order to go directly to Sophie. Sophie was in the NICU and already had her IV and machines hooked up to her before we arrived in the room. 

Toledo Children's Hospital was able to slow things down for us so that we could comprehend what was happening. The surgical staff wasn't convinced that Sophie had a blockage but they knew something was wrong. Sophie was given a barium enema and from what I hear, she took the biggest...dare I say poop, that the nurse had ever seen come of our someone so small. Sophie started pooping on her own after that so we thought we were on the mend.

After 6 days and many tests later, we were allowed to take Sophie home to wait for the results of the rectal biopsy. When we were home Sophie was still going on her own but it was a struggle for her. The results came in and Sophie was diagnosed with Hirschsprung's Disease. HD is when the ganglionic cells don't grow all the way down your colon and your colon can't retract to push the stool out. The only fix for this was surgery. Since Sophie was going on her own we decided to wait and give her time to grow. As the days went on, Sophie started having more and more trouble going poop. She would scream just to pass the stool. When Sophie was only 6 weeks old we scheduled her surgery for June 10th, 2011.

June 9th I took Sophie to the hospital to check her in and to start the process of cleaning her out for surgery. It was awful. Instead of remembering Denton and Quinton on their birthday I was holding Sophie preparing myself to lose another child. June 10th came and Sophie surgery lasted just under 3 hours. Sophie came through the surgery well but Sophie started to go into congestive heart failure. Congestive Heart Failure is completely different in babies than adults. Babies don't die, they just have their lungs start to fill up with fluid and needs medication. Sophie was started on Lasix as well as Sprionolactone. High doses to boot! 

Sophie struggled for a while after the surgery and without going in to detail there were a lot of things we had to do daily with Sophie in order to have her fully recover from the surgery. It was awful and we felt like we were abusing our child.

Sophie was finally doing well with her HD issues (besides a week stay in the hospital around the 4th of July for being backed  up with gas) but her heart needed attention.

Sophie was also born with several heart defects. Sophie has PDA, ASD, Pulmonary Stenosis and 2 heart murmurs. On August 11th, 2011 Sophie underwent a valvuoplasty and PDA closure. It was supposed to take 4 hours. At the 4 hour mark the head assistant came out and told us the hole was too big and Dr. Butto didn't think he could do the procedure and that we were looking at Open Heart Surgery. At that moment I can't even begin to explain to you what I felt at that moment. Less than 10 minutes later she came back out and told us that Dr. Butto found a way to do the procedure. We were able to see Sophie 2 hours later. That was the longest 6 hours of my life. By the grace of God Dr. Butto was able to do this surgery. Prayers were being heard and answered.

So, Sophie had two surgeries before she was even 6 months old. I wish with all of my heart I could tell you that it ended there. But I can't! The truth of the matter is that Sophie has way more going on with her than any of us could ever begin to fathom. This post is extremely long so I will break for now. I don't want your eyes to start going crossed!

Simple Life...What does it mean?

I don't know about you, but growing up whenever I would hear the word simple, it was a positive thing, something I looked forward to. A simple question, a simple answer, or even a simple math problem (there is no such thing once you pass 6th grade math). Even a simple life seemed appealing to me at times. Now that I am grown and I have a family of my own, there are days that seem everything but simple.

The word simple, by definition, means:

sim·ple 

adj. sim·pler, sim·plest

1. Having or composed of only one thing, element, or part, 2. Not involved or complicated; easy: 3. Being without additions or modifications; mere 4. Having little or no ornamentation; not embellished or adorned 5. Not elaborate, elegant, or luxurious.  6. Unassuming or unpretentious; not affected. 7. a. Having or manifesting little sense or intelligence. b. Uneducated; ignorant. c. Unworldly or unsophisticated. 

Out of the several definitions listed here my eyes are drawn to number 7a. What most people don't know is that Sophie's life, up to this point, has been anything BUT simple. Heck, even Shane's life for that matter. To simply put it, we lead a very un-simple life!

As you continue with me on this long, narrow, sometimes dark, and winding path, I can assure you that I will also share the beautiful, happy, and sometimes comical moments we encounter as a family. I do admit, we laugh everyday, even if it is to keep from crying!

Bare With Me

As I sit here and begin to type, I am hoping that people will be interested enough to read what I write. I am not a writer by profession, but with things the way they are in our lives right now, I need an outlet. This seems to be the healthiest outlet I can think of right now. Well, besides working out. I definitely don't have the time or energy for that right now and it shows.

My intentions for this blog are to just update, inform, and to educate my friends that want to be part of our lives. The only thing that I ask, if I may, is that what you read here, share here unless it is a personal email or inbox message on FB. We don't share our lives with everyone, especially the trials we have faced recently. Please be respectful. 

So, as I embark on this journey, I beg of you to just, Bare With Me!