Saturday, October 27, 2007


We buried Jake today. It has been the longest two days of my life. So many people loved him. Here are some pictures and his Eulogy:

BORN 7-9-05 at 7:06 2 pounds, 14 ounces, half a heart

1st Birthday

2nd Birthday

Eulogy to The Face

i carry your heart with me by ee cummings

i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear; and whatever is done
by only me is your doing,my darling)
i fear
no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it's you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than the soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)

So many people knew of Jake’s amazing journey through life as a heart baby. Born 10 weeks prematurely, with half a heart, the multiple surgeries, the 2 separate resuscitations that brought him back to us twice before. Jake always had legions of people praying for him to continue being a miracle on Earth.

For those who didn’t know him personally, he was a small, chubby cheeked boy with a killer smile that could light up even the darkest room. Forceful and stubborn, with a strong personality and particular way of doing things, he waited patiently for everyone else to fall in line with his plans. He liked to walk his bike and watch Elmo, dance and sing. He spent hours playing his music and drumming.

His greatest happiness in life was spending time with his family. He never let you forget he was around or forget to pay attention. He copied our expressions and movements – anything to make us laugh. He hated to sleep or let us sleep. Some of our fondest, and not so fond, memories are of his little hand tap-tapping away on our face until we finally got up for an exasperated Jake. If four hours of sleep was good enough for him it was good enough for everyone.

We will never forget all the joy and laughter he brought to everyone and how he made each day happy and fun.

Last Friday night, with his eyes so swollen he could barely open them, with infection raging through his little body, with tubes and wires everywhere, he opened his eyes to see us standing there. And even though our jokes were bad, he mustered up his last bit of energy and smiled at us.

Jake, you are the most courageous soul we ever knew. It was a privilege to be your mommy and daddy. If love could have saved you, you would have lived forever.

Friday, October 26, 2007

Thank you

To Katie and Blues and Charles and Em and Helen and Len thank you so much for your support the past few weeks. For all the people who have left comments in the past few days, thank you also. I cannot get back to all of you but your emails will go in Jake's baby book. Knowing that so many people care is a blessing.

For the previously mentioned people, or if I read your blog - if you would like the DVD we made of Jake's life email me with your address and I will send it to you.

My email is grl e grl 333 at A to the O to the L dotcom.

Thank you everyone.

Monday, October 22, 2007

3 AM

Jake woke me every monring in the hospital at 3 AM. Sometimes he was back asleep by 4. I cant go back to sleep, so I gave in and took one of pills.

That is how it ends. They hand you a perscription, swaddle your dead baby and take him away.

I cant imagine what kind of pill could possibly help me but right now, at my first 3 am without my jake, i cant bear it any other way.

i didnt know you could hurt this bad or cry this much.

The world doesnt work right anymore. I dont understand how this happened.

He was doing better. They told me he was really seriously ill but he looked fine. His numbers, all his numbers were so good.

They asked me if they could put in an art line. A somple art line, 20 minutes. I said yes, I kissed my baby and I went to lunch.

He never came back. When I got back they were trying to get him out of respitory failure and all of a sudden they were talking about abdominal surgery. I only went to lunch. It was only an art line.

They got him back but they knew then. They didnt tell us but they knew. He started to swell up. He could only open his eyes to little slits on Friday night. Saturday morning I went to school and when I came back Joe was crying and saying they said it was over.

All his numbers were still so good. I yelled at everyone for scaring Joe. They showed me Jakes blood numbers but it doesnt mean anything to me. He is my little fighter, my Jake. It is impossible that he can die. It cant be.

I dont understand how numbers on a piece of paper mean he is dying.

Friday night, he opened his eyes, little slits of eyes and we made him smile.

He smiled for us. I dont know how that can be his last smile. He is only 2. It is his time for firsts. It can be time for lasts.

The horrible horrible thing is that no one every tells you about last things.

Today we took off all his monitors and tubes and wires. We bathed him and dressed him in the pajamas that everyone had signed for him on his birthday. We let everyone hold him and then Joe and Jake and I got into bad and we held him. Joe let me hold him until he stopped breathing.

It is not right. The world is not right anymore. I dont understand. I only went to lunch.

The worst part is that I started to forget.

When Jake has his massive stroke and it was clear that so much hard work would be ahead I decided to not look back. I started to try to forget everything that went on before because I didnt want Jake to feel like I felt he was less. I decided we would start all over again from scratch. I would forget everything he had been able to do and be happy for all he could do and was going to do.

Now it's hard for me to remember. I dont want to forget.

Here is my Jake -

whenever the phone rang he would stop what he was doing and go to stand by the phone to listen in case we were going to answer.

He would walk around everywhere with my cellphone and have long conversations. Then say "Okay, bye"

Every day after dinner he would say "bike" and we would take his bike down to the sidewalk and walk to the park. The first thing he said when he came off the anethesia from his Fontan was "bike".

When he was really little his daddy taught him to rub his hands together and look evil when we would say "Im gonna RULE the world". I would give an evil laugh "Ah ah ah" and Jake would said "I-e-e".

Every morning he would step on the scale and I would say "25 pounds of Jake" and he would crack up. If I said any other number he got mad.

I think the pill has started working. I have stopped crying and I feel different so maybe I can go back to sleep. Now I get to have firsts instead of Jake. My first morning without him is ahead.

Good night.

Saturday, October 20, 2007

No Title

They are arranging to let us bring Jake home and let him die in bed, surrounded by all of us who love him.

I cannot bear it.

"I know not how to say goodbye when goodbye is the word that needs to be said." -Grimmscrave

Thursday, October 18, 2007

Another waiting game

I didn't mean to leave you in suspense. The operation on Friday went fine. The first part went well but the second part failed. He started draining 2200 mL. I realize my millimeter count is not very fascinating but it consumes most of my waking thoughts and at any moment I can spout off his last reading and his average reading for the day and how it relates.

I kill at parties.

In spite of the failure, on Monday, at 2 PM for no known reason, his drainage went down to 60-80 per hour. The next day, 20-40 per hour. I was hoping yesterday would be the same but it was still 20-40.

I tried not to get my hopes up because a lot of things could interfere and make it appear that his drainage had stopped. But today the docs said they think he really is maintaining about 750 a day.

Back up three days however, to our worst fear come true. Face got a rare and serious fungal infection. It has laid him low like Ive never seen him before. If he has been awake for an hour total I would be shocked. He surfaces just long enough to moan in pain until something - mommy pats or position change or drugs - puts him back under. His doctors say they are more worried about him than they have ever been.

Everything is on hold while he beats this.

The problem is that in order to cure it they have to take out his central (pic) line which is delivering everything he needs. Some things can only be delivered that way that he will have to go without for the time it is removed. Like nutrition.

It feels like everything they do to help makes more problems. His lungs are going so they put in a high-flow cannula that forces air into his lungs. He is much MUCH more comfortable now that it is in. He doesn't have to work as hard which means he has more energy. To cry.

On the flip side, his drainage really is down and there is a good chance once his infection is clear, barring other catastrophes, we may not have to have any other interventions.

Since he is a huge brat he has leveled off at 700 which is the outside range of intervention. Meaning that at 800 they would persue a 2nd lymphangiogram/ligation, at 600 probably not but 700...

This fungus has given his body some time to stop the drainage on its own and I hope it takes the opportunity.

It's gonna be a sucky weekend (as opposed to the usual joy) because he will have to be monitored extra close. In laymans terms, he will have to get stuck for blood a million times and glucose-tested every two hours and poked and prodded.

This is what Ive decided is going to happen -

He will beat the fungi by Monday
Tuesday he will have a new pic line put in without complication
By Tuesday he will be draining 20 or less an hour so even if it increases slightly from the pic placement it wont be a big deal and will go back down in two days

If all that happens (and it will) then we will just be in for the long haul of drainage which takes, on average, about 3 months. Of course there will be in-patient rehab after that but please, we can do that kinda time standing on our heads.

In other news, last weekend I somehow became the mom of a person entitled to get his driving permit. I welcome this, as it is the first time in a while that my permission is more dangerous to the world than to my child.

:::laughs evilly:::

Good luck, pedestrians. Terror is on the road.

Thursday, October 11, 2007


They are getting desperate to stop his drainage.

Tomorrow, an out-of-hospital surgeon will come perform a procedure that has only been done 1 other time on a child. If that is successful, he will perform a second procedure that has never been done before on a child.

All in the hopes of stopping the drainage that is killing him milliliter by milliliter.

Let's hope it works.

Tuesday, October 09, 2007


This is a picture of Face in his sporty chair about a week after the stroke. He is still having trouble eating but, for heart reasons, he isnt going to eat for a few weeks anyway so hopefully he will regain suck.

He has some right arm movement, excellent right leg movement, no left leg, some left arm. Some hand on both sides. He said "Da" but he rarely speaks because it costs so much - his whole body shakes at the effort to get out "Da." Smiling, he does (when he's not mad at us).

On Friday he went down for his 8th procedure and everything started spiriling out of control - he had high fevers from a pic line infection, desats (50s), high heart rate probably from fever and low blood pressure from a mix of bad doctor decisions (all the doctors rotate out and he had a whole new set on Friday).

So he went critical with so many meds they didnt have enough access - 2 poles, 12 boxes (each box has an IV med). He also is leaking 1500 mL a day from his chest tube. Monday they took him down for his 9th procedure - to give him an even bigger chest tube in a different spot and put a new (infection free!) pic line in his femoral vein.

With all the fluid people have begun talking about "6 months" as a timeline for being in the hospital. One doctor was telling me the record for drianage is 900 in-hospital days. Kill. Me. Now.

No, really.

If I look up at the road ahead I start to panic so I am keeping my head down and taking it day by day, mL by mL. I am not going to consider the therapy he will need or the help Ill need to take care of him.

With this kind of hospital time it doesnt make sense to keep having an apartment so J is probably going to live with his mom - for which I intend to tease him unmercifully. Terror is gonna stay with my parents and I will become a homeless hospital waif.

Trying not to panic and keep my sense of humor. I am even more determined to keep going to school.

I leave you with a picture of a different sort. Our lives have become so crazy-surreal that on Friday night, eve of my big Chemistry test, Face started really failing. As I stroked his head and bagged him (basically forcing air into his lungs for him) J held up my polyatomic ion flash cards and quizzed me.

I hope your lives are much more calm.