Jessica Jensen

I don't often put my feet into the pool of Congenital Heart Defects (CHD) very often any more.  Mainly, I don't feel I can offer much to people that are in the same position I was almost ten years ago...  "Hi, my name is Dan, sorry you're having to deal with all this, I know how you feel, but my daughter passed away..."

Not really a message of hope for people new to the world of heart defects.

I am still on a couple of lists, and I do still read through the messages, but for the most part, I am a quiet bunny.

Back in October 2000 when I first landed with a bump in the world of CHDs, the first list I joined was PDheart, a US-based support group with a scattering of International members, one of the first people to welcome me was Nancy.  Back then, her daughter Jessica was still young, but she told me her story and everything they've been through, and ended with the words "She is classed as terminal"

Over the years, we got quite close, and every now and then would get in trouble with list administrators for having conversations that veered off on considerable tangents.  I'm sure there are some that recall the great Teletubbie Debate that disrupted an entire list for almost 24 hours... Oops.

Nancy and myself often chatted on instant messengers, resorting to voice chat occasionally.  Depending on the time of day - bare in mind she's in Arizona, and I'm in England - either my kids would be in bed, or her lot would be in bed, but every now and then, either Bethy would join in, or Jessica would come on.

We'd chat for ages, mainly about England, Harry Potter, Hogwarts, Power Rangers...

It's not often that I am lost for words, but recently, the updates of Jessica have been steadily getting worse. I've jumped on every email from Nancy, reading what's going on.  The last message from her I've copied below (with permission):
Jessica is continuing to decline. The last time she ate anything solid was last Sunday, Aug 1st. She has had several days of being comfortable 99% of the time. I just can't remember when she was so peaceful... she's been in so much pain for so many years. She has been sleeping more and becoming more withdrawn the last couple of days. My parents were able to arrive into town safely and have been here to visit with Jess twice. My sister, (who's son passed away almost 2 years ago from a brain tumor) flew into town and came to see us also. Jessica has a couple of visitors come by and she didn't really open her eyes much for them but did a little wave with her fingers when they left. When I was talking on the phone, I mentioned that my sister was coming into town she smiled. As soon as my sister came her eyes flew open and she adjusted herself in her bed so she could see her aunt. We haven't seen my sister in almost 3 years. It's soooooo good to have her in town for a few days.

Jessica has pretty much been nodding or shaking her head and even signing a few words instead of speaking but a few hours ago (about midnight) she perked up and started talking to me. Of course she would... it's party time at midnight. hehe! Poor kid threw up earlier in the evening (and that woke her up!)... mostly dry heaves. I called the hospice nurse and they want me to put the anti-nausea lotion on her wrist every 4 hours 24/7 if possible. That way we can keep on top of the nausea. I've also noticed that instead of fluid building up in her feet and ankles, she's got some building up in her knees. She is also quite congested at times. Most likely due to lack of activity but she is too weak to do anything except to go potty (which is a portable one that we bring into her room and it's 1-2 steps for her to take at most.

We are having to shift our thinking. All these years I've done my best to keep her alive and as healthy as possible. Now the goal is for her die as peacefully and comfortably as possible. She has been going through the dying stages for several months already - we just didn't know it due to her CHF keeping the weight on. But there's nothing that we could have done anyway. The hospice nurse explained to me that the GI doctor was wrong when he said that Jessica was starving and that we needed to get her to eat. He said that most doctors have been trained to save lives and concentrate on that so much that sometimes they forget that dying is also a natural part of life... if the body is dying it doesn't need food and it will reject it... just like she did Monday night. Vomiting, high fever, etc.... we had been trying to push her to eat and she even got mad and yelled at me, "why is everyone trying to make me eat? I can't eat". A little while ago, after she started talking, she asked me what I thought she could eat. I said that I wasn't sure that she should eat because I didn't want her to throw up again. She said, "I didnt eat today or yesterday so I'm worried" I told her that her body doesn't need to eat right now and that I could get her more soda, popcicle, jello.... she asked for Root Beer. She seemed relieved that I wasn't pushing her to eat and that it was ok not to. She isn't aware of time as much anymore and I was surprised that she thought it had only been two days since she had eaten anything. It's ok. We are just playing it by ear and loving her as much as possible.

Thank you all so much for your lovely emails. I have received quite a few privately and I appreciate each and every one. I pray that God continues to bless her with peace and comfort and that she is able to go on to her new life with joy in her heart knowing that so many people love her. She has her cousin who will greet her (and whom she dreams about every night - they usually go to Disneyland in her dreams)... so I know she won't be alone. There are many others who will be there for her too.

Love and prayers,
Nancy
I read that email over and over, and wanted to mail Nancy, but every time I opened a new mail, I just sat staring, not sure exactly what to write.  I did eventually fire a mail off to her, but I was truly lost for words.  Really, I still am.

The day Bethy died - the very morning - Nancy phoned Guys Hospital as she had been reading the updates whirling around the world and wanted to speak to me.  We chatted for... I have no idea how long...  I don't really remember the conversation, but that's not the point.

Nancy, I know I've already mailed you, but I will say it again.  Jessica, you and your whole family are in my thoughts.  I am sending good vibes and everything your way.  I wish I could do more for you, I wish I could say something to help or make things better, but know that you are all on my mind.

Please feel free to use the comment section to send her messages, or visit her blog, Are We Having Fun Yet.  Jessica loves getting comments too :)

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6 Responses to “Jessica Jensen”

Kim said...

Oh how sad. It's really hard to know what to say in this kind of situation, but it's better to say something, even if you feel it's inadequate. The person receiving it will be grateful for any words of comfort, no matter how small, rather than think people don't care . xx

Anya said...

So so sad to read this, I 'bumped into' Nancy when Bethy was sooo poorly (was there anyone who didn't meet through Bethy) and read her website then - the Jensens have always seemed a remarkable family - not hard to see where Jessica gets it from - May I have permission to post this on HeartLine as I am sure there are some old timers who remember Jessica?
Thanks Dan - thinking of you too
Anya x

debbie said...

I also came across Nancy and Little miss Jess when I fell upon the world of Dan and CHD UK, Jess is an inspiration to all, although we knew that Jess was Terminal, Nancy her mum and family did everything to make Sure Jess did well and survive, you did your very Best Nancy knowing what the future was going to be, your a fantastic mum to an Amazing daughter,, it is so sad to read the updates that i am scared to what is comming in the next one..

Thinking of you all to another brave family in the CHD world,,

Nancy said...

Dan, thanks for the email and for this post. You know we'll always be friends, Dan! You can't escape it!

I told Jessica that you sent and email and that you 'almost' prayed for her. She smiled at that! hehe! We talked about Bethany a little while ago and how she will be happy to meet Jess in heaven. I'm sure they will get into a lot of trouble up there and Bethy will have Jess running around with underwear on her head. LOL - I love those stories about Bethy. Jess and Bethany have so much in common... I'm sure they will be the best of friends.

I agree with Kim that saying something is better than nothing and if you want to send me an email with just a ((hug)) then that's fine too. I appreciate your friendship and in the future I'm going to have more time to bug you here on your blog so watch for it. ;)

((((Hugs)))
Nancy

Phoenix said...

I really don't know what to say but I felt I had to say 'something'. im sending an Angel to watch over you and to help you through this time. Much love to all. xxx

Posh Totty said...

Thinking of Nancy and the whole family no end, especially Miss Jess and sending loads of love and strength their way Xxxxx