Charli's 4 days

Charli Rose was born June 8,2013 at 6:41pm via C-section.

This is what I know.....I am still piecing it all together............
She needed to be resuscitated minutes after birth. This I know because of a medical bill I received days ago. She immediately was taken to the NICU. She was 2lbs 14 ounces and 15 inches long. Ben was with her by 7pm.

I met my daughter for the first time at 11pm on June 9, 2013. I was able to hold her "skin to skin". She was on a ventilator to breathe. My tiny baby girl was so fragile.

She had a rough night. She needed a blood transfusion. She was taken on and off of the ventilators. At one point she was just using a cpac to breathe. We were hopeful.

June 10, 2013 we were told that Charli had bleeding in her brain and lungs. They had already inserted a tube into her side to release air that was filling her chest cavity. That procedure was done that way because of her size and was now facing infection. We were told that her brain bleed would not heal. Everything that we would do from here on out would be painful and traumatic to Charli and would not save her life. She would never be a healthy little girl. We were devastated.

Ben and I decided at that time that we were not going to do anything more medically to prolong the inevitable. We would allow Charli to be given morphine to make her comfortable but that was all. Hardest decision we have and will ever make in our lives.

June 10th we called family and close friends to come and see Charli Rose because she was not going to make it. With about 20 friends and family, Charli was baptized.

June 11, 2013 we decided that after 5pm at night we were not going to have any more visitors. We were going to spend that time with Charli Rose alone. We knew she did not have long and we wanted her passing to be in a calm and quiet setting with her mom and dad just loving her. The doctor changed over her ventilator so we could hold our daughter. Ben and I just held and loved our daughter.  At about 11pm, I was handing Charli over to Ben and realized that I was soaked. My precious little girl had peed all over me. :) I left the NICU to go back to my room to shower. I got back to the NICU at about midnight. The minute I entered the room Charli's heart rate started dropping quickly. Her ventilator was already giving her 100% of her oxygen.

This was the beginning of the end.

June 12, 2013 1am- We knew she was going to die soon. We asked for all the tubes and cords to be removed so we could see our daughters face before she passed. We asked that she was given more morphine for comfort. For the next 45 minutes we held her and admired her tiny face, cringed as she took tiny gasps for air(doctor had warned us of this), and cried in disbelief. We took pictures. We just loved her.
At 1:41am the doctor pronounced her dead. We could not believe it was over. I looked at my daughter and saw almost relief and a small smile on her face. She was not in pain anymore.

Our amazing nurse offered to let me bathe Charli. I did that and enjoyed putting her in an outfit and putting a pink bow in her hair. We wrapped her in a blanket and cuddled her longer.

At about 4am we finally thought it was time to hand Charli to the nurse and walk away. I never wanted to let her go. It was harder and harder the longer I held her. She lost the little color she had so quickly.

There are so many details that I don't remember. I wish I would have had the courage to write this down right away or as it was happening. Physically and mentally I was struggling. We still can not believe that this happened.

Charli Rose ......the start

May 24,2013-
Went to bed after noticing a small red bleed while going to the bathroom. Told Ben and decided that I would keep an eye on it through the night.

May 25,2013-
Went to the bathroom when I woke up and was having more red bleeding. Called my doctor's office and was told to go to the ER. Spent May 25-27th at Children's Hospital on the Labor and Delivery floor. Got two shots off steroids to help strengthen Charli's lungs......just in case. Sent home on modified bed rest.

June 1,2013-
Worked 4 hours to tie up loose ends until I would return to work after Charli was born. Thought that would be November. Was 26 weeks 3 days pregnant.

June 2, 2013-
Went back to ER with bleeding. Admitted.

June 5, 2013-
First real red bleed. Smaller one. 24 hour monitoring off baby and not able to eat or drink just in case. Bleeding stopped two hours later. Found out I would be staying in the hospital for the next ten weeks until Charli Rose was born via c section at 37 weeks. 27 weeks today.

June 6. 2013-
Another red bleed. Bigger than the last. Stopped an hour later. Again 24 hour baby monitoring and no food or drink just in case. Got a pic line.

June 7, 2013-
Red bleed. Scarier than the last two. Another 24 hours of monitoring and no food or drink. Anxiety level at that point was through the roof.  Had a blood transfusion.

June 8, 2013-
Bleed at 11am. Called Ben and told him to take Carter to his last soccer game that was at 1pm. Was tired of interrupting the boys lives. This bleed was over within an hour. Brief sigh of relief. 5:30pm I skyped with Oliver and he was sad. I asked him and Ben to come to the hospital to cuddle with me and watch a movie before visiting hours ended at 8pm. 6pm I started to bleed. Called Ben at 6:17pm and told him that this was a bad bleed and I was about to call the nurse. Told him to hang tight with Oliver.  Nurse came in and saw the amount of bleeding I was having (was like a waterfall) and got me on the baby monitor. Baby looked fantastic, like she always had through all these bleeds. Within minutes there were ten people in my room and then I heard the words........"We have to deliver." Already hysterical, I lost it. The doctor called Ben. All I remember is yelling "It's too soon!" over and over. And then I was put to sleep. Charli Rose was born at 6:41pm. 2lbs 10oz 14.5 inches long.

June 9, 2013-
I woke up terrified at 3am. My mind was slowly waking up but I couldn't move my body or speak. I still had a breathing tube and I was in excruciating pain. I was throwing up and having panic attacks that I couldn't breathe. When they finally removed that tube after two hours of torture, all I could do was whisper. I tried to make sense of what was happening or had happened. Over the next couple hours I learned of what the night before had consisted of. I was told that my baby girl was doing well and was in the NICU. The second I could talk I called Ben. All I wanted to do was see him. I learned I was in surgery for 4-5 hours the night before. After they closed me up after the c section and tubal ligation, the pushed on my stomach to check my uterus. I started to hemorrhage. They could not stop the bleeding. It was not safe to open me back up. Eventually they did an embelazation that cut off the blood supply from my heart to my uterus. I lost 3 liters of blood and had 5 transfusions. Finally saw Ben and pictures of my baby girl.

Charli Rose Grassel

 

I didn't get to see my precious baby girl until 10pm that evening. I pumped and was able to get a small amount of milk for her. It was excruciating getting in the wheel chair for the ride down to the NICU. They let us hold her. She was doing well at this point. Only getting some oxygen but was breathing on her own. Missy and Tracy came to see me and got to meet her. Mike and Julie got to meet her. Mary and both Carter and Oliver got to meet her this day.

We were so in love with this tiny beautiful baby girl. We were scared to death of the future. But we had that time of ignorant bliss. We could not believe that she was doing so well after being born so early. We were told she would be in the hospital most likely until her due date. She needed to be able to eat on her own, breath on her own, and be strong enough to sit in the car seat. We welcomed the challenge.

Never once thought we would only have 4 days with our girl.

And then there was 5........

Although I am writing this today, January 15, I don't plan to post it until after the 22nd when I go to the doctor.

Doctor for what you ask? Well, we are expecting baby number 3!

 I know, I know, it comes as a shock to many. Especially since I myself was convinced that any more kids would make me crazy. Don't get me wrong, I have always wanted a huge family. 5 kids like I had growing up would be great. I look to the future and just see huge family dinner with grand kids all over the place. That sounds fun to me. Love everywhere.

So here we are expecting another little blessing in September 2013.


I want to try my best to chronicle this process in between bathroom breaks and overwhelming nauseous spells. As you can see that has been my reality for now. I will be 7 weeks pregnant on Wednesday. The all day sick to my stomach feeling has kicked in. So tired I can barely function is here. Smells of things are making me crazy. Nothing sounds good to eat. I'm so thirsty all the time.

Wow...I started this post in January and today is May 3,2013. I am 22 weeks pregnant with a baby girl.

April 28th 2013 (21 weeks pregnant)

Despite some bumps in the road with this pregnancy we are chugging along. I have a complete posterior placenta previa which makes this pregnancy high risk. I am a strict restrictions from my doctor. June 10th I have another ultrasound to asses the placenta and see if it has moved. Facing bed rest at some point is scary. Healthy baby is priority though.

I was very sick in my first trimester and ended up only gaining one pound. At 22 weeks I have only gained a total of 3. With 18 weeks left I hope that the weight doesn't pile on.

Did I mention we are having a baby GIRL??????? Yay!

Update on the kiddos to come...................

The diagnosis update

Two weeks ago Ben went back to the his neurologist for a follow up appointment.

To make a very long story short ............

Ben was diagnosed with CIS. http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/diagnosing-ms/cis/index.aspx

He is in the category of High Risk due to the fact that there are multiple lesions on his brain.

We are currently researching two medications he needs to choose between to start as soon as possible. Both are shots that he will need to give himself. Expensive.

Knowing that Ben will develop MS in the future as turned our worlds upside down. We are completely re-evaluating everything that we had planned out. This changes everything.

We decided to rent a place as oppose to buying. Having our future be so unknown makes it very difficult to lock into a 30 year mortgage.

We found a beautiful place in Wauwatosa. We start moving in a few weeks. We are very excited to have a three bedroom place with a natural fireplace. The little things make us very happy. :)

This weekend starts the season of what we affectionately refer to as "500 Christmas's".  Saturday is our first of 5 Christmas parties.

Tis the Season.

Sick Sick Sick

The day after Carter had his reconciliation he came home from school with a 101.1 fever. His stayed sick for three days. He even spike a 103.5 fever on Wednesday night. He never threw up though. Crazy sickness. He went to school yesterday because he asked his dad if he could, although I thought he should have had another day home. He seemed to have done ok. No more fever but he was super tired and went to bed early. Hate this time of year. Oliver was throwing up last Monday but had no fever.


This morning in the car Oliver asked me ...
"Mommy, when I am 31 and a mom can I come to your work and share your chair?"

My response (to myself) was "Oh honey I hope you have your own job and chair to go to!"

My response to him.."Of course honey."

Reconciliation

Monday November 3, 2013

Carter and 32 of his 2nd grade friends participated their reconciliation. They were all adorable all dressed up and anxious to say they were sorry for their "sins".

It was very nice and Carter really was excited about it.

Happy Thanksgiving!

In honor of Turkey Day tomorrow, I thought it would be appropriate to write a post on what I am thankful for. God knows I don't give thanks enough. And what better way to let someone know you are thankful for them, than in a public blog post. :)

2012....What I am thankful for..........

7 year old Carter......(his sense of humor, the way he still wants to cuddle me (as long as we are at home and no one can see, and his love for math.)

3 year old Oliver.......(his silly disposition, facial expressions, and his love and knowledge of cars.)

Benjamin......this man loves me more than I deserve. He thinks I am beautiful with no makeup, sweatpants and tshirts. He has done things for our family that I can never repay him for.

Sammy......It took a long time for us to get to the place we are now but my little sister is my biggest support system. She is the person I call first above everyone else when I need a shoulder to lean on. This girl is an amazing and I am so thankful to have her in my life.

My parents......My mom and step dad are amazing and have always had my back.

Jack and Jill......Jill's words of wisdom are simply priceless.

Katie and Joe......My "little" sister and "little" bro make me melt when I see them love my kids so much. I am so thankful that they are such an amazing aunt and uncle to Oliver and Carter.

Fat cat Bugs.........I am so thankful for this fat and loving cat. Having this cat sleep on my feet every night makes everything right in the world in a odd way. He needs us as much as we need him.

Mary.......I am thankful that she has endured us taking over her house for the last year. Nuff said.

Tri City Hyundai.....I never thought that a job could be a place I wanted to go. This company has been a blessing this year. I looked for work for a long time. Not only have I found a job that doesn't suck but I found a group of people that genuinely care about each other.

Jessica......This woman has been a huge part of my life this past year. Countless phone calls, papers corrected, and late night glasses of wine and girl talk. I can not imagine my life without you as my dear friend. Surprised after all the time that pasted after high school how in no time we reconnected like no time had passed at all.

Mike, Julie, Nick and Steph......This family is an amazing light in our life. They are always so welcoming and loving to our family. As Ben's aunt and uncle they never once make Carter or I feel like we are not a true part of the Grassel family. And Julie taught me to knit! :)

Health....Last year on Thanksgiving I was in the hospital having emergency surgery to have my gall bladder removed. Today I feel great. My kids are healthy. Oliver has had no histiocytosis events. Ben tested negative for MS(right now). So right now in this moment I am thankful for our health.

Grandma's House daycare.....I can not say enough how amazing Oliver's daycare is. Ms. Lynn, Ms. Darcel, Ms. Laurie, Ms. Katie.......These are fantastic educators. My 3 year old has learned more from these ladies than I would have ever imagine from a daycare. What preschool child knows dinosaurs with correct pronunciation as well as characteristics, habitats, and what they eat? These teachers are genuinely concerned for my child. They are priceless.

Golden Gyro's.......I am thankful for their strawberry sundaes.

I am so thankful for many other things too. I could really go on for days. Bottom line is even if it sounds minuscule to you......these things are huge to me.

I am truly blessed.