Donations to Seattle Children's

Some have asked us if there is a foundation or non-profit for donations in Aimee's name. Beth and I feel strongly that if you feel like making a donation for Aimee's sake, please consider sending it to Seattle Children's Hospital. Life would have been so difficult without the amazing work done there by so many wonderful people. Of course, if you have a foundation you support, please donate to them in her name there. Either way, we feel honored by the fact that others will benefit because of her testimony.

The link to Seattle Children's Donation site is:

http://waystohelp.seattlechildrens.org/donations/

Have a great week
-Lynn

Its been one long week.

Lynn and I survived our first week without her. It was packed with ups and downs, but we made it. Today we went looking for a new place to live. We have been renting an apartment and we thought that it would be nice to have a fresh start in a new place. However, once we thought about packing everything up and moving out we had a change of heart. It tore us apart to think of driving by this place someday and not being able to go inside. This is the only home that Aimee has known. I can't tell you how many times I have walked up and down that hall burping her at 3 in the morning. I think I would even miss the squash that splattered on the ceiling when I dropped the jar of baby food. Even though her bassinet is gone I can still see it when I walk by. Sometimes I catch myself just staring at the place where it use to be. I know the day will come when we will be ok with moving on, but I just can't do it yet.
My family flew in from Texas to be here for her memorial service. My daddy and I had a chance to have some of those priceless "daddy-daughter talks". When my mommy went to be with Jesus in 1990 he went through the same thing. He found comfort in living in the same home that they shared. Her touch was everywhere. I still remember we had a big sheet of paper on the fridge that covered the entire bottom door. At the top my mommy wrote "Jesus is my..." and we filled the bottom with everything that we could think of: friend, shepherd, healer, savior... I think I wrote down some pretty corny ones, but that piece of paper stayed on the fridge for at least 3 years.
So for now I don't know if I am ready to move. There is still a bottle in the fridge-I know it is gross, but I promise I won't leave in in there for 3 years! I still have lots of baby food in my pantry that I can't part with yet. Every once in a while at the grocery store I sneak away to the baby section and just smell the baby lotion. It has a way of bringing me right back to that place. I feel like I just gave Aimee a bath and wrapped her up in her little towel and snuggled her till she was all warm and cozy. I miss my girl so much it physically hurts.
Thank you all so much for coming to her memorial service. It was such an encouragement to be surrounded by people that have supported and loved us through this. Sometimes just being there makes all the difference in the world. We love you guys!

Chloe's Poem

In Her Mother’s Arms

Angels dancing in the sky,

And there the babe lies, in her mother’s arms.

The snow falling in the night,

And there the babe sleeps, in her mother’s arms.

Innocent Moon peeks through the clouds,

And there the babe struggles, in her mother’s arms.

A dog barks, a bird chirps,

And there the babe cries, in her mother’s arms.

Then all’s silent as they watch

All is silent as they watch

The miracle, the lamb, the babe,

As she drifts to her home in heaven,

In her loving mother’s arms.

Dedicated to the little angel Aimee

By Chloe Bazlen

Chloe is Beth's amazing 12 year old cousin. She loved our little angel so much. Thanks for letting us share her with you Chloe Bell -We love you so much! XOXO Beth&Lynn

Life keeps on going...

It is all I can do right now to hold myself together. Today I tried cleaning up our house and I keep falling apart. I opened a drawer to put the silverware away and her little baby spoon was there. It was the one that she had her first solids with. Just the sight of it made my heart drop. I could remember the confused look on her face the first time I gave her applesauce. She just sucked on it and eventually spit it out no matter how many times I tried. But just seeing her spoon reminded me of the giggles I would have watching her try something she didn't like. Bananas were her favorite. She would eat bananas any day. I miss the sounds of her eating and breathing. I hope I never forget her sweet little sounds.
I have been talking to her pictures as if she was there listening. I rock back and forth when ever I sit down. I keep thinking I need to buy diapers. I wake up in the morning and the first think on my mind is change her diaper and feed her. It feels weird sitting in the passenger's seat of the car and not in back watching her. I order decaf out of habit. I keep thinking it is about time she had a bath. I miss her so much. She was supposed to have a doctor's appointment today... it feels kind of eerie knowing that life goes on.
Many people have asked how she passed and I don't mind sharing it. It is up to you if you want to read on. I understand if you don't- It is only now that I am able to relive this in detail and write it out. On Saturday we were watching a movie and I was cuddling with her on the couch and her oxygen saturation kept dropping.
No matter how much we gave her it wasn't making a difference. Her breathing started to slow down and she became very congested. I can't even begin to tell you how much agony your heart feels when you are holding your precious child while they slip away. She would take a breath about every 30 seconds and I would just sob and bury my face in her neck praying for her to pass quickly. My heart was pounding as I watched her rosy little cheeks pale. I knew this was coming but once I got there I was in so much pain I couldn't think. There were times when she would get a bit better and we would tell her it was ok to go home. We told her well done good and faithful one Jesus is waiting for you. Lynn was sobbing as he was speaking the 23rd Psalm over her. Our family surrounded us and stayed up with us until about 3ish. We know she wasn't in any pain, but it was only by God's grace that we were able to make it through that valley. Lynn and I took turns holding her till about 3 in the morning when we finally fell asleep with her in Lynn's arms and she was holding on to my little finger. Our hospice nurse was here during the whole time and was watching her and helping us keep her comfortable during her passing.
It was about 3:40 when our nurse, Tonnie, woke me up and told me her heart had stopped beating. I was disoriented at first but then I saw her and pulled her close in my arms held her to my chest and rocked her. I don't know if I can finish this now. I 'll post when I can.

Memorial Service

Just a very quick update. There is a memorial service planned for Friday April 25th at 3 PM. It will take place in the prayer chapel at The City Church 9051 132nd Ave NE Kirkland, WA 98033. Please call my cell (425) 463-6492 or email me at lynn.heinemann@gmail.com for any questions.

-Lynn

Also, some have asked to pass on my brother's poem "Clay." Please share it with others as you see fit but I do ask that you will always attach his name and our blog address to the end of the poem. It is his work and I forever want him to be recognized as the original author.

The Day After

We are still here. I keep thinking she could have taken us with her and this wouldn't feel so bad. Guess it wasn't supposed to be that way. I was looking for something on the floor today and instead found a little shoe under the couch. All the walls and excuses I put up this morning didn't do anything after that. I might as well work through it instead of trying to forget. Anyway, we had to go to the funeral home this morning to sign papers and finalize everything - you end up feeling a little cruel signing papers and making huge decisions so quickly. In ways, it feels sterile and heartless but there is nothing you can do. We have been told we should write a book and we are considering it. At the very least we have notepads around and are constantly writing out our thoughts. I am picking up a digital voice recorder to record my thoughts whenever they happen. After a few days and weeks the memories will not be so clear and I want to catch those painful sharp memories now where they are. Pray for us as we go through the process of moving on. The door is closed and no matter how hard you try to reopen it, there is no handle just a path in front of you.

We will keep our blog going because many have told us they read it every day. I always considered my thoughts to be a little dangerous but Aimee's purpose has not even started to be realized. Her witness and testimony will continue to be effective for years and years to come.

Also, a MAJOR praise report - one of our close friends gave us a car tonight. We started praying for a car yesterday because Beth will be getting a job and we were not sure where to start with that. Wow. We love you 2 so much.

-Lynn

"Clay"

"Clay"
By John Heinemann

The Potter takes two lumps of clay.
It's up to Him to make it any way that he wants.
One lump can be a bowl.
And another very similar lump can be a million dollar vase.

I am a bowl {being misused as an ash tray}.
Made from exactly the same kind of ceramic as her.
The potter had the right to make me that way.
The right to make me a bowl.
And I added the ash. Added society's overused trash.

She had no ash. No trash.
She was.
She was and she loved and smiled.
Nothing more.
How many boys wouldn't have died in foreign fields if more people just were.
We were made naturally good.
We made ourselves evil because we could.
And the ones that matter listen to their nature.
It doesn't have to be all of them. Even half. Or an eighth.
Because just one person causes a family and all of their friends.
To step aside and listen. To love. To create.
Like they listened to The Potter when He said she was precious.
Like how they loved her when the unwashed masses couldn't see why.
Like they created family bonds stronger than most.

But those kinds of people are rare.
That is why they are the proverbial million dollar vase.
Those people who appreciated what they were looking at.
Will feel doubly that empty space.

Perhaps they'll teach a few others.
And with a new knowledge those others will go.
Knowing that truth is beauty, beauty truth.
That is all you know on Earth, and all you need to know.

{I am proud to say this is my brother. His talent is endless.}

Finally Home

I am very sad to be writing this but rejoicing at the same time. Our little Aimee Elise went to be with Jesus at 3:40 AM Sunday April 20th. Beth and I are of course a little shell-shocked right now but we are so happy to know that she is whole and healed now. No more surgeries. No more 2AM trips to ER. She quietly went to sleep in our arms and did not struggle or experience any discomfort. It was a very peaceful passing and we had time to say our goodbyes. I can barely think of the words to write. It hurts so terribly but inside we have a peace and quiet that passes any understanding. It's like peace itself has taken residence in my heart to wash away the blinding pain that is there.

A memorial service is being planned but I do not have any exact details. It will most likely be at The City Church in Kirkland, WA sometime in the next week. I will do my best to post the details as soon as I know anything. Thank you all for your prayers, letters, and emails. I guarantee this is the hardest thing any parent will ever have to do but through Christ, amazingly enough, all things are possible. We welcome any questions you might have - feel free to email any time.

Lynn & Beth

Let it snow

Today we were keeping warm inside while it was snowing -yes, snowing... all day. Today I had one of the best moments I can ever remember. We had a roaring fire in our fireplace. I had Aimee in my arms and huge soft flakes were falling. It was the closest thing to pure bliss I think I have ever felt. It seems like God has been giving me so many of these moments were all I can do is be still and rest with her. Lynn's parents flew in last night and have been doing everything from dishes to dinner to help us out. I was able to snap a picture of a tender moment that Grandma G had with her little grand baby. It is such a joy to share her. We have had so many of these little pieces of pure happiness the past few days. God is so good and knows the perfect way to prepare me for the road ahead. I think days and moments like this will never be far from my thoughts.
Today Aimee has had trouble regulating her temperature as well as her breathing and it can be so hard to watch her. We have been successful in keeping her calm and treating any agitation quickly. She has been kept safe and warm in the arms of family and friends all day. I don't think that she has been in her cradle for more than a total of 10 minutes today! We will keep you up to date and let you know if there are any changes.

I just wanted to write a quick note to update all of our faithful blog readers! Aimee is very comfortable and is sleeping almost all of the time. Our hospice nurse has been visiting more frequently and helps me keep Aimee from getting too agitated. I can hardly believe it -even though I am watching it with my own eyes, but she is slowing down and her little body is just not handling food, sleep and normal functions like it use to. I can see all of this happening, but my mind just refuses to accept it. Right now the only thing keeping me going is the peace that I have in the hope that I will see her healthy and complete again. I don't know how anyone could go through this with out knowing this peace. It is my firm foundation that I am grounded in during this storm. At home we are snuggling as much as possible and savoring every precious breath and sigh she breathes. We have been so blessed by the people who have come by to visit. It means so much to us that you have taken your time to comfort us and just listen while we are going through this. I love the company and the friendship! Thank you! For now I am signing out - I am going to go cuddle my little princess. -Beth

Home Sweet Home

We are at home and it feels so good to be back. During her stay the hospital I caught up on as much sleep as I could. It was sorta humbling to be snoring in front of her team of doctors and wake up in a pool of drool and try to play it off as if I was "just about" to wake up... Ever since we got home our living room has been turned into a mini hospital where we have everything set up for her comfort. We have oxygen, feeding pumps, monitors with bells and whistles that drive me nuts. Basically everything that the hospital could offer we have here. Unfortunately, I have not been able to feed Aimee by mouth for the past week. She is having a lot of difficulty eating and ends up getting the food in her lungs which causes pneumonia. So we have a little tube going down her nose and into her stomach. She is fed 24-7 and seems to be content with a full belly...who wouldn't be huh? Lately she has been sleeping a lot and there are a few precious windows where she is awake and cooing. Oh, those moments are pure gold. It has been such a difficult past week. I miss my feeding time with her. We would snuggle and I use to turn off every thing just to her the little noises she would make with her bottle. Call me crazy but I miss all of those great burps too!
When Aimee had that close call on Saturday I can't explain it, but it was amazing how much peace Lynn and I felt during the most excruciating pain. During her "last minutes" I have never felt so scared. It was sorta like standing on the edge of a cliff. You can't see the bottom, but you know you gotta jump. I wasn't scared of what was going to happen to her, but I didn't want to go through the pain. However, through it I was rejoicing knowing she would be in the arms of Jesus in an instant. Lynn and I were just thankful that she would not know anymore pain or discomfort. It brings me such joy and peace knowing that this little sweet baby girl would go directly from our arms to His.
We have prayerfully decided to go back to hospice and make Aimee's life as comfortable as possible. Her treatments are not going to be as invasive as they have been and our decisions are going to be based on her ease and relaxation. It is such a difficult decision to make when there are other options out there. It gets easy to second guess yourself and sometimes I honestly struggle with what others will think. But, we have been praying for wisdom and I know God has been guiding us. Lynn and I agreed from day one that we would not keep her on machines to sustain her life. We just don't want to keep her trapped here when she could be in paradise with Jesus exploring colors sights and sounds for the first time.
Lynn and I feel like we have already been given a miracle. We know that nothing can keep her from seeing, talking or walking whether it is on this side of heaven or not. I know this may not be what some of you are expecting from us, but God has given us wisdom, strength and direction and we are going to follow. We love all of you so much. Your prayers have been covering us and holding us during the most heartrending time of our life. Thank you for being a part of it. -Beth

Quick trip to ICU

Last night was a real rollercoaster of a ride. About 9 PM, Aimee was getting a dose of medication through her feeding tube and may have had some reflux. However it happened, she stopped breathing entirely and went Code Blue (meaning life-threatening emergency for the few that may not know). The emergency team rushed in and used a hand bulb and face mask to start breathing for her. They moved her to the ICU in the following ten minutes and kept breathing for her the entire way. They asked to put in a breathing tube and we decided not to do that because it is so invasive and painful for her. They told us that she was not breathing on her own and that since we did not want the tube that she would pass away fairly quickly. They brought a couch for us and pulled all the wires and tubes hooked up to her. Then they pulled the breathing mask and left us alone holding her. At first she had a very hard time breathing but after two minutes or so, those cute big eyes popped back open and she looked at us as if to say, "Something going on around here? What you crying for?" So after 15 or 20 mins we got her back in bed and on monitors again and we moved back OUT of ICU this morning and will probably head home on Tues or Wed. This little girl loves attention but has some scary ways of getting it. Please be praying for us though because this kind of thing can happen at any time and may even happen again very soon. It is very serious right now and we are leaving it in God's hands as to what happens. Breathing tubes are very uncomfortable and even painful for a person especially a 9 month old infant; you have to be sedated to keep from panicking or pulling the tube out. We decided a long time ago that life support was NOT an option for us or Aimee and we have filled out the paperwork that puts Aimee on a DNR (Do Not Resuscitate) order.

Update April 5th

Hey there friends. We are back at Children's again. There has been a lot happening in the past 3 weeks. We brought her back last Wed and unfortunately it looks like she has pneumonia although there seems to be some debate among the staff about that. Over a month ago, Children's prescribed a medication called propranolol to help with her storms. That worked very well until Beth and Aimee went to Austin to see Grandma and Grandpa. We think the change in schedule and environment triggered her storms again and now propranolol does not work at all. After returning home, she seemed to improve briefly and then went downhill again. Lately she has been going through quite a lot for such a little lady. She sometimes has storms 4 or 5 times a day and they are pretty scary to watch. When we got to Children's, they decided to replace her medication with something called clonidine. However, instead of giving her .05 ml they gave her .5 ml, 10x the normal dose. It put her into a super relaxed state and dangerously slowed her heart but she came out of it with no expected long term effects. Only problem was that at the peak of the medication's effectiveness, she went into a very bad storm confirming it does not work for her. We thought that things were going alright and then late last night she started to get some thick secretions... basically thick and nasty phlegm that was making it hard for her to breath. So now they are testing her to see if she has a respiratory virus and we are still in isolation. Long story short, we have no clue still of what's going on and we are waiting for a care conference with all of her doctors to make a decision of our next step. Please be praying that we find a medication that works for her or something changes with her health. Praise God for the staff at Seattle Children's for their dedication for this little girl.