Thursday, April 24, 2014

I'll be ready next year.

It was a typical Easter Sunday around here.  The kids got up way earlier than they should have, especially considering they may or may not still believe in the Easter Bunny.  But the lure of chocolate and other items in their basket was too much.

They seemed delighted with what they got and enjoyed a nice breakfast of candy.  It was a long Lent for them as well so I let them indulge.

I was hopeful that Mass would lift my spirits but unfortunately, it did not.  I wasn't able to sing any songs because I felt like even trying to raise my voice would cause the tears to start. 

I did my best not to look at all the cute babies dressed in their Easter finest but Peter and Sarah insisted on pointing each one out.  And I let them.  They seemed to take joy in looking at the babies and even though it was breaking my heart, I couldn't tell them that.  So I painted on a stoic smile and sat there like a robot nodding each time they pointed out a little one.

I am certain that next year I will feel the joy that Easter normally brings but this year it just wasn't there for me.

After we got home from Mass we headed next door to my parent's house for lunch.  My best friend's family was already there and we enjoyed a wonderful meal. My mom is a great cook!

After the meal, we took all the kids outside and let them take turns at a pinata that my aunt got for them.  Even though I thought they might be a little old for the pinata, they all had the best time hitting it.  And it was loaded with lots of candy - the good stuff, too.  Lots and lots of chocolate.

It wasn't the Easter that I had hoped for but all in all it was nice day with friends and family and I know the kids had fun. 

I love this quote from Pope John Paul II -  

"Do not abandon yourselves to despair. We are the Easter people and hallelujah is our song!" 

I'm sure that next year, I'll be ready to sing it.

Wednesday, April 23, 2014

And here I am.

The visitation and the funeral are over. My sweet baby has come and gone.

And here I am.

I want to write it all down.  I need to write it all down. But I just don't have the words yet.  And every time I try to type a sentence the tears start.

But I was afraid that if I didn't try to write something - anything-  today that I wouldn't ever want to write here again.

Dan is back at work today.  His company has been so kind to him with all the time off he took for his mom and for Rebecca and for that we are so very grateful.

Peter and Sarah are still on Easter break this week and honestly I'm glad.  Not quite sure I'm ready to be sitting in an empty house.  Although, part of me thinks a quiet house may be exactly what I need.

I'm a crazy tangle of emotions.  Crying one minute, laughing the next.  Wondering why this  happened at all, thanking God that we had her even briefly.

I'm always trying to thank God.  And I say trying because if I'm being very honest these last two weeks, I haven't felt very thankful.  But I'm trying because I read a Lenten devotion last week that I can't stop thinking about.  Every Sunday at Mass, I hear these words...

"Before he was given up to death, a death he freely accepted, he took bread and gave you thanks, he broke the bread, gave it to his disciples and said, take this all of you and eat it. This is my body, which will be given up for you."

I've heard those words so many times that I guess I've taken them for granted.  But this devotion I was reading reminds us that right before his death, a very painful death he did not deserve, Jesus gave thanks!   So, even in my struggle with Rebecca's short life and her death, and my questions, and my tears, I am trying to remember to give thanks.  It's not easy.  And I'm struggling with it, but I'm trying.

And I'm going to try to get back to normal - whatever that is -  around here.  The blog will have pictures and stories of fun times and normal life.  But I'm sure it will also have moments of sadness and reflection. 

Because just like my tagline says up there, I'm just taking it one day at a time.

Friday, April 18, 2014

The obituary.

Rebecca Irene Cotell  -  April 10, 2014 -April 15, 2014

Rebecca Irene Cotell passed away on Tuesday, April 15th, 2014. She was born on April 10th 2014 in Winston-Salem and was baptized and anointed at birth. She passed away in the loving arms of her mother and surrounded by her father, brother, sister, grandparents and uncle.

Rebecca was the beloved daughter of Elizabeth Tesh Cotell and Daniel Patrick Cotell. She is survived by her parents as well as her brother, Peter; sister, Sarah; maternal grandparents, George and Donna Tesh of Arcadia; uncle, Brad Tesh of Arcadia; aunt, Catherine Cotell of Alexandria, VA; uncle, Robert Cotell of Frederick, MD; uncle and aunt, Richard and Jennifer Cotell as well as her cousin, Jillian Cotell, all of Needham, MA. Rebecca was preceded in death by her paternal grandparents, Robert and Irene Cotell of Wellesley, MA.

Rebecca's time on this earth was short, but no child was ever loved more. She will enjoy eternal rest until her loving family comes to meet her again in heaven.

A funeral service will be held Tuesday, April 22, 2014, 11:00 a.m., at Holy Family Catholic Church with her great uncle, Rev. Robert Browne, officiating. The family will receive friends and family on Monday, April 21, 2014, 6:00-8:00 p.m., at Vogler and Sons Clemmons Chapel. Burial will follow funeral service in the church cemetery.

Tuesday, April 15, 2014

Good night, sweet baby.

Rebecca passed away this evening at 9:01 PM.

At 4:20, as the kids were coming in the NICU door for a visit after school, she took a turn for the worse. 

So we spent the rest of the evening loving her, kissing her, holding her hand and rubbing that sweet little head.  I believe she received more hugs and kisses in the last 5 hours of her life than many people receive in years on this earth. 

My heart is broken but I do take comfort in knowing that she is resting tonight in the arms of Jesus. Thank you all for your prayers and support.

Monday, April 14, 2014

Monday Update

Rebecca is still fighting.  The big news of today is that her morning x-ray showed a tiny spot in her right lung that might be a pneumothorax which is basically a small hole in the lung. This won't be repaired as it is a very painful procedure and might ultimately be what causes her to pass.

Every day, based on the latest information, the doctors review the different scenarios but unfortunately they all lead to the same outcome. It's so hard to believe this beautiful little baby isn't going to be coming home with us.

Sunday, April 13, 2014

Sunday update.

We are in a bit of a holding pattern here...and I don't mind one bit.

Rebecca spent the day entertaining visitors - my parents and my brother came this afternoon and they brought Peter and Sarah.

Baby girl loves it when we get her out of the warmer, swaddle her and hold her. It's always a production but so worth it to get to snuggle with her. And when we are holding her she tries to open her little eyes to get a look at who's holding her.

When we put her back in the warmer and the visitors are gone, we sit be her side and hold her tiny little hands,  massage her long feet and rub on her soft strawberry shaped head and whisper to her that she is loved.

The nurses let us change her diaper and take her temperature every two hours. And we know how to work the suction machine so we can help her get rid of all the saliva that has no where to go. And we are going to help give her a bath tonight which thanks to all the equipment and tubes and wires probably won't involve an actual bathtub.

Rebecca can't cry because of the tube down her throat but we know when she's upset. Her brow furrows,  her back arches, her arms flail and her feet kick. She may be the quietest baby in the NICU but we always know when something isn't right.

We have been revueeing our options and we aren't going to put in a feeding tube and tie off the trachea/stomach fusion. There are a lot of risks and potential downsides to that.  We also aren't going to remove her from the ventilator and other machines and watch her wither away either.

Instead we are taking a more middle of the road approach. We are hanging back, keeping her breathing and fed and we will just see what baby girl does.

If she starts to go on her own (which will most likely be the case due to the chance of fluid filling her lungs or air in her stomach bubble causing the stomach to push on her lungs) then we will make sure she is as comfortable as possible and love her as long as we can.

I think this approach  leaves the door open for God to show his power and his might. We are allowing her to live.  And if he wants to jump in with a walk on the water, feed 5000 people with 5 loaves and 2 fishes, raise Lazerus from the dead miracle then we will willingly accept that! But if that's not his plan then we will accept that as well.

And I guess, ultimately, that's what saying yes to God is all about.

Saturday, April 12, 2014

Rebecca Update

I was released from the hospital today and immediately headed to Rebecca. She was stable today although the doctors insist that the end is near. (We had a bit of a scare this afternoon with a clogged tube and thought it was over. However, it ultimately ended up being fine.) We are enjoying every minute we can with her. Even though it's a big production with the tubes, we had her out of the incubator and held her for 5 hours. Peter and Sarah even got in on the fun when they came to visit as well. Thank you for all the prayers. It is a comfort to know that Rebecca is so well loved!

Friday, April 11, 2014

It's been a long, hard day.

I got a pass from the hospital so I was able to spend the day with my sweet Rebecca.  The nurses went out of their way to let us all hold her.  It was very complicated due to all the wires and tubes but it was wonderful to get to hold her even if it was only for about 30 minutes.

Later, after Peter and Sarah left, we met with her entire medical team and the news was not good.
In addition to the esophageal atresia (EA) where the top part of the esophagus ends into a pouch and doesn't continue on into her stomach , they believe she also has a tracheoesophageal fistula (TEF).  This means that the other portion of her esophagus which does go to the stomach has a portion that has fused with her trachea.

They were hoping to repair the EA yesterday but after arriving at Brenner, she was struggling so much to breath they ultimately ended up putting her on a ventilator.  Because her esophagus is so tiny, they had a very hard time even getting her onto the vent.  Apparently it took several skilled doctors attempting to vent her before they were successful.  Dan said at one point there were over 10 people around her trying to keep her alive and get her on the vent.

It is the medical team's opinion, based on the trouble she had yesterday, that she would not survive the surgery.  And now that there is a TEF involved as well, they are worried that they would get in there and there wouldn't even be enough esophagus to do the repair.

After that heartbreaking news we were left discussing our options.  After many conversations and many more tears, we are still trying to decide exactly which option is best for Rebecca. But whatever we decide, it will end with us saying goodbye to our little one.

Please pray for wisdom, peace and comfort.


Unfortunately they weren't able to get Rebecca's breathing stabilized yesterday so they had to put her on a ventalator. The doctor said they don't like to do that because once you put a T18 baby they never come off. This was not good to hear but I do know, thanks to a T18 Mom's Facebook page that I joined, that this isn't always the case.

Because they put her on the vent and we're having trouble getting a tube in one of her veins (they were finally successful but it was hard because things aren't where they should be due to her extra chromosmes) they did not do the EA surgery.  And then the doctor said she was too small so we needed to wait anyway.

I am waiting on a pass from my doctor and as soon as I get that my parents are going to take me to see her. I will have to come back here tonight but will hopefully be discharged tomorrow.

So at this point we are still praying for a miracle.