Evie's Story

We wrote a tribute to Evie that was read at her memorial. We'd like to share it with you, along with some pictures that we haven't posted on this website before:

To describe a life so short, it would be best to start at the very beginning. We first found out Evangeline was on the way early on a cold February Sunday morning. We were surprised, nervous, and excited. We went to church that morning, this same church, with many thoughts and emotions about our upcoming adventure. We worshiped with great thankfulness for the blessing we’d received.

As the child grew in the womb, so did our anticipation and dreams for her life. At 20 weeks we were told that we should expect a girl. Happy for either a boy or a girl, we were excited to now better visualize who this little person would become. As the baby grew inside of Nicole, mother and daughter already began their bonding. Dad got in on the action too; giving pep talks to the baby, singing songs to her, and feeling for kicks. Even so early in her life we knew the little girl was mighty.

Long before we ever thought about actually having a baby, we fiercely debated baby names. About six months into the baby’s gestation we finally started coming to a consensus. We liked the name Eve or Evie, but we couldn’t decide what her full name should be. Then during a late night drive, Nicole had an epiphany. She suggested Evangeline. Matt was sold. The name was versatile for many nicknames, and it had significance. Evangeline means “good news”. We knew this baby was good news for us, and we hoped that her life would help share “good news” with others.

When autumn came and Evie’s arrival was only brief months away we were overcome by the love and excitement that so many shared with us. Our excitement became nearly unbearable. On Friday night, November 16th we were finally off to the hospital to deliver our long awaited baby. Nicole labored through the early morning, and after hours of pushing, Evangeline Marie Gustafson Kennedy was born at 11:13am, November 17th. She came out a beautiful shade of purple with a pointy cone head. We wept with joy. Weighed and measured she was 8lbs 15oz, and 21” long. She was born exactly on her due date. Mother and daughter rested quietly together throughout the afternoon. Though exhausted from a long night of labor, mom and dad could not help but simply sit awake and stare at their beautiful baby girl. She enchanted us.

We had a brief time to start to get to know our child. Evie was a quiet baby. When she fussed, a tight swaddling easily comforted her. In the darkness of early morning, Evie’s eyes opened and mom and baby bonded as they looked into each other’s eyes. The sweet little girl charmed all her visitors, but her parents most of all. We called her “the love dove”.

We only shared a single night at home with Evie, by morning we knew that she was not well and soon that day we discovered that she had a congenital heart defect. She was admitted to the Neonatal intensive care unit at Children’s Memorial Hospital to begin the fight for her life. From the moment she was admitted, Evie was in the care of amazing people. We spent as much time as we could at her bedside; touching her, talking to her, praying over her, and singing to her. Within a few days the care team at the hospital helped stabilize Evie and mom and dad were given opportunities to hold her and care for her even though she was hooked up to monitors. A few days later Evie met her grandparents. With all her family gathered around, Evie was baptized the day after Thanksgiving.

On Tuesday the 27th, Evie had her first surgery. It was then when we learned her heart defects were even more serious than first understood. With hundreds of family and friends supporting her with prayer, Evie had a second surgery three days later. She spent another 10 days in Intensive care on a bypass machine. After a long struggle to restore her health, we had to make the decision to take Evie off the machine to see if her heart was strong enough to make it or not. It was quickly determined that she would not, so we spent her last hour together as a family. Evie passed away in mom’s loving embrace. She was 23 days old.

We could have never predicted how much deep deep love we could have for a person we barely had the chance to know. What we do know about her is that she was both strong and beautiful. More than a few times she bounced back from severe setbacks, and everyday we stood amazed at her beauty. She had daddy’s eyes and nose, mommy’s ears and fingers. We hope that if she only knew one thing about us, that it would be how much we love her.

In the three weeks we had to know Evangeline, she changed our lives. We will never be the same. We were her parents, and we will always be her parents. Evie made us proud as she fought hard against the toughest medical adversity. We find some small comfort in knowing that in her short life she was surrounded by incredibly caring people and that that nurses and doctors worked as hard as they could to save her. Though we spent most of her life with deep heartache, she gifted us with great joy. We are still Evie’s parents, we will never forget her and we will always do our best for her. She will be kept in our hearts until that day when we are all reunited, and there we hope to pick up where we left off.

The Memorial

We will have a memorial service to honor Evangeline this Friday morning, 10am at North Park Covenant Church (5250 N Christiana Ave Chicago IL 60625). All are welcome. Arrangements are being made with Benson Funeral home.

In honor of Evie's memory, we invite Evie's friends to make a charitable gift to Children's HeartLink. We learned about the work of HeartLink through one of Evie's nurses. They send skilled Cardiac specialists to underserved countries to do surgery and treatment for children with heart disease. We've always understood that it was uniquely fortunate that Evie was given a shot at life with the best technology and healthcare workers in the world, but that it is too unfair that so many kids never even get a chance. HeartLink works to give many of these children the opportunities they deserve. You may donate on their website through an online form or through sending a check, and in either case you may note that it is in memory of Evangeline Kennedy.

We've been encouraged and touched by everyone's care and prayers. Thanks. We ask that you also say a prayer tonight for Addison, Seamus, Mark, Margot, and all the other boys and girls in Intensive care tonight.

Yesterday

I hope very much that word-of-mouth has gotten the news out enough already so this at least won't come as a shock to those closest and dearest to us. Yesterday, at about 5pm we lost our Evie after she was removed from ECMO. We discussed the decision to take her off of the machine with her surgeons, and it was their assessment that her heart had recovered as much as it could on ECMO, and she needed to show us if she could make it without. We consented to removing her from the machine, and it was very quickly apparent that her heart couldn't keep up. We were told she did not have much time left, and we went to her bedside and I was able to hold her until she died. She was in no pain, as she was fully sedated.

This is the hardest time of our lives, and we appreciate all the support we have been receiving. We will write more after a while, and include details about her memorial service, which we've yet to plan.

Still Waiting

As is so often the case here at Children's Memorial, when somebody says something is going to happen at 9am, you can bet it probably won't get off the ground till noon. Because the cardio-vascular team is working on a case in the operating room this morning, we're now told the weaning off ECMO won't start till "mid-day". So we continue to wait here by Evie's side. She's doing alright. Her blood cultures to determine if she has contracted an infection are still inconclusive, but it often can take closer to 48 hours to determine if one has a minor infection or not (an aggressive infection would likely be showing clear signs by now.) Still, huge odds mount against Evie. Depending on how things go its possible we won't have any news until tomorrow.

Sunday Evening Status

As many of you picked up, this morning was pretty devastating for us as it had appeared that Evie has a huge challenge to face in order to get off ECMO and survive. We cried in grief and confusion. We had those difficult but necessary conversations that people need to have about what to do in the worst case scenario. Its fair for everyone to know that from the clinical standpoint that Evie has big odds against her (and many unknowns). After a long morning of experiencing those depths, Nicole and I found some sense of resignation. While we are still highly emotional, we're also concluding that whatever will be will be. We are sad and scared. We haven't "made peace" with the idea of losing Evie, but we will not despair until we know for sure that the end has come. We will fight as long as she does, but not a moment longer.

All that said, Evie has yet again surprised us this afternoon with her fighting spirit. Once her vitals were stabilized just before noon, she has held steady. Though we won't know until tomorrow if she really has contracted an infection, she has yet to show signs of being overwhelmed by it. She is not running a fever, has good color, and stable vitals.

We've spent the entire day in Evie's company. We talk to her, sing to her, read to her, pray over her, and touch her. Tonight we've been given permission for one of us to stay in her room, so through the evening we'll continue to wait by her side.

Some where in the neighborhood of 9am on Monday morning we plan to begin to withdraw her from ECMO. We never know exactly when these things start and how long it will take. We really won't know one way or the other how this will go for hours after she's withdrawn. With that in mind, we'll encourage all of you not to read anything into our silence tomorrow. Time will move slowly.

Critical Hours

Evie did not do very well through the night. Inexplicably, her vitals were not very stable. Thus when morning rolled around she was not in a good place to begin weaning her from the machine. This is very discouraging.

There are a few possible explanations for this. It may be simply that she's having a "bad day" and she's reacting a little bit to a new dialysis machine they installed last night. The other options are more frightening; either she has contracted and infection or her heart is simply not going to get much better. In any case, the current plan is to take the rest of the day to stabalize her and give her 24 more hours of rest. Most likely we will take her off ECMO tomorrow morning because we are now going on nearly two weeks on the machine and the risks she faces staying on ECMO now are equaling or outweighing the risks of coming off. We simply have to wait and see how she does.

There is not much we can say right now. We are trying to cling to our last little bit of hope, but this is definitely not the position we hoped she would be in this morning. Pray for Evie.

Sunday is a big day

This evening we spoke with the attending here in the ICU. The care team is now recommending that tomorrow morning we attempt another trial weaning off ECMO and then attempt to take her off ECMO. We've known this day was coming and have hoped for it, but we are also very scared. There is no way to really tell how she'll do once she's off the machine. Will her heart function well enough to sustain life on its own? Will she handle the transition coming off? Will she maintain good vital signs? These are the pressing questions.

We pray that Evie will be protected from the great risks of ECMO one more night and that in the morning her heart and her entire body will have enough strength, vitality, and function to begin the long road of recovery.

The "Trial"

This morning the ultrasound technicians joined our team of doctors to take a look at Evie's heart while they turned down the flow on her ECMO. She's been holding steady between 300-330, her heart doing ca. 1/3rd of the work. When they first started the trial, they turned her down to 250 and took a look at her heart. At first they didn't see much good function so they upped some of her blood pressure meds. Within a few minutes they saw some improved function (not superb, but some good pumping in critical spots). They left her at 250 for another 45 minutes and then came back to look a second time, this time at a flow of 150. Again the heart had that same "okay" function. Blood pressures remained good and she was stable at that flow for about an hour. With all this, the doctors said it was fairly encouraging results but that they were not yet ready to take her off ECMO. The tentative plan is to give her a few more days rest at 250 (her heart doing about 40% of the work) and then try to take her off on Monday. Each day they will evaluate her. While deep down we hoped for a dramatic turn around, we also fully understand the caution the care team wants to take. It would do Evie no favors to withdraw her from bypass sooner than she was ready. If she would not do well after being withdrawn, there is very little hope that she could go back on a third time.

Late Thursday Update

Evie is basically back to where she was this morning before the ECMO malfunction. She is stable at a flow of about 330, and we're told they plan to try her at 300 again tonight. Just now, before we left her room her blood pressure looked great for a long period of time so we are guessing that reducing her flow should go well. However, the true test will be tomorrow when they plan to "trial" her off of ECMO, meaning that they will turn the flow down as low as possible and watch her heart on an echo cardiogram. The goal is to hopefully take her off of ECMO soon and increase her medications to help her along. We would be thrilled if they were able to do this, because we want her off of ECMO ASAP. It is saving her life, but also threatening her life (this morning's incident is a perfect example).

Our emotions today have been very confusing. When we found out that her troubles this morning were due to a temporary malfunction of ECMO, we were both overwhelmingly relieved and angry that it ever happened in the first place. Then, when she quickly returned to stability, we should have felt good again, but it is hard to go from preparing for your child to die to accepting that they're stable. It was a difficult day, but we capped it off with some friends who brought us Thai food, and helped us talk and laugh a little bit.

For the morning, the best case scenario is that the doctors feel she is ready to be off of ECMO. Please pray for that miracle! Please also pray that, in any case, the doctors will have the wisdom to take the best course of action. Thanks to everyone for your support!

Quick Update

Since this morning's debacle Evie has remained stable. Her blood pressures have stayed good enough that they've turned down her ECMO flow to 380. That's not as low as where she was at yesterday, but it is a good sign she's tolerating it well.

Nicole and I are doing a little better too. The sights and sounds of your child crashing and the many long minutes we spent preparing to hear the worst had left us reeling, but with a few hours now to process and relax we're not freaking out as much. We are still very scared, but appreciative of signs that at least her heart has not been set back too much by the episode. As always there are numerous unknowns.

An Incident

We woke up this morning and started heading to Evie's room about 5 minutes after seven. When we arrived Evie's heart rate and blood pressure were low and dropping. Within 60 seconds doctors and nurses were rushing to her bedside as they feared she was crashing. We were in shock. As they worked to stabilize her, Nicole and I were moved to the waiting room. Within a few minutes the surgeon joined us to say that though they are working hard to stabalize Evie, there are a few possible things going on with her and they are not good. He said that Evie either was having a brain bleed or an infection. If it was a brain bleed, then Evie is finished. If it was an infection, Evie was in extreme trouble and would be very unlikely to survive. He left us to go back into her room as they were doing an ultrasound of her head to determine if she did have a brain bleed. About 6 minutes later he returned to say that it was not a brain bleed--and it might not be an infection either. Allegedly what happened is that a circuit on her ECMO machine had malfunctioned, the machine was not filtering CO2 out of her blood. Her heart was reacting to that. When the machine was fixed her vitals started to stabilize. She is currently stable. It was one tiny little tube that came partly disconnected for an unknown period of time.

Nicole and I don't know what to feel right now. Sure we are glad that it was not a brain bleed, but the idea that such a simple and stupid malfunction could have cost her life is infuriating! Additionally, we don't know how much this has set her back. Her ECMO flow that had successfully remained in the low 300s most of the night is now back to full blast. It is undetermined how this will effect our efforts to wean her off the machine. Additionally frightening (if not more) is that we don't know how long her blood was not being effectively oxygenated and there are large looming questions about how low 02 levels might have damaged her brain. We just don't know and we won't know unless/until Evie gets off the machine, wakes up, and can have a complete neurological exam.

This morning's events only reaffirmed the truth that as long as she is on ECMO she is at incredible risk. Through this out of control roller-coaster ride Nicole and I have struggled to understand where God is in all this and what prayer/faith/and hope are for us right now. I know many people want to pray for very specific things, here is what I'd suggest: that her brain is protected from any potential brain bleeds, that her brain function is protected from the lack of 02 she experienced this morning, that she'd be protected from infection, and that she has not been set back so that we can't continue to wean her off the machine.

The Chest Exploration

This morning our doctors went in and took a look at Evie's heart. They observed that it had good pumping motion so they made the decision to try and turn down the flow on ECMO to see what happens. Since she went on ECMO the machine's flow has been near maximum, 400-420. They were able to turn the flow all the way down to 100 before her blood pressure began to drop. According to the doctors, that showed quite good progress considering how bad she's had it. So they've got her stable around a flow of 250. One could say she's almost "halfway" off ECMO. We'll do this for two days and on Friday morning they'll go in again and see if she's ready to come all the way off.

As of right now it still remains to be seen whether or not the defect or leaky valve will need to be corrected by surgery right or not. In any case, we're glad for today's progress. As many have said, Evangeline is one tough cookie.

Stability: Day 2

Continuing to be glad for stability. Fluids are coming off while blood pressures remain good. While this is fine, Nicole and I are having trouble relaxing because we know this is only a temporary state before we take a big step either one way or another. Tomorrow morning the doctors will do a chest exploration to determine the quality of Evie's heart function. What they find will determine what happens next. Our options could be either a third surgery or to begin to attempt to wean her off ECMO--depending on the doctors assessment. Tomorrow's exploration will be an incredibly important event.

To our support team back at the park: perhaps our next visitors could bring me a few pairs of clean socks (T-shirts and underwear are still doing okay).

A Little Sanity

When we went to bed last night, Nicole and I were so exhausted from the setbacks and frustrations of the previous two days. We needed something to lift us up. We needed 24 hours without a crisis. Twenty-Four hours later, we are almost ready to exhale a little bit. Evie has made good progress. Her blood pressure has remained very good--to the point that she is on a minimal dosage of medication. With that the care team has been able to drain off much of her excess fluid. Though I hate to say it about my beautiful baby girl, her appearance since the surgeries has been grotesque due to the puffiness, paleness, and the extensive machinery that supplies her life. Now that she's down over 600ml and has some pinkness back to her complexion, she's beginning to resemble herself again. So a whole day without crisis and a notable improvement to her appearance has been a big lift to Nicole and I. More importantly, this is good for Evie. We will never be able to attempt to wean her off ECMO without draining her fluids and stabilizing her blood pressure. We're now well on the path to doing that, but do note my word attempt. There is little way to predict if and how well she will be able to come off the machine. Only time will tell.

I know that many of our close friends who are far away feel helpless right now as they are not able to be with us. We want you to know that though separated by distance, your prayers and encouragement have helped. We also are very moved by the kindness of our local community; the seminary, university, and our friends here in Chicago. I am told that frequent evening prayer services have been held at North Park to remember Evie. Students and staff gathered to pray through the Psalms. I cannot think of anything more appropriate. Just as our family has experienced the gambit of emotions; elation, betrayal, gratitude, and anger... so do the Psalms reflect the full range of our human experience. We offer to God thanks for the blessings we are visited, but we also offer to God our desperate and furious laments. God is big enough to take what we have. We have been reminded of what the Apostle Paul says, that when we feel like we cannot pray the Spirit intercedes for us. Additionally helpful was the reminder from a friend last night that even the Lord Jesus felt abandonment, sadness, and anger and it was not at all wrong of him to do so.

Many people have demonstrated and pledged their desire to be a real tangible help to us. We've been blessed by deliveries of clean laundry and snacks, comforted by the company of visitors, and gladdened by many other genuine caring efforts. Some have approached us about wanting to contribute some way to help us with the expenses of medical care. A few individuals are currently working on setting up a fund, so if you are interested you can email me and I will hopefully soon be able to point you in the right direction.

If Evie is to ever leave this hospital, there is still a long road ahead of us. For now we are grateful for a boost of strength to get us through another day. We have no other choice but to press on and fight for Evie as long as she has fight in her.

Patience

Things have remained mostly the same all day today. Not much to report, which for us is pretty disappointing since we really needed to see some progress today if only for our own sanity. We are feeling pretty jerked around by the ups and downs of her status, and now being on ECMO again has been very discouraging. We have been pretty low on faith these past 36 hours. However, one of our goals for today did begin to be accomplished in the last several hours. We wanted to see her maintain her blood pressure while reducing the amount of medication she's on and drawing fluid off of her body (she's still as bloated as she was coming out of the operating room--thus far, they haven't been able to remove fluid because her blood pressure would drop when they attempted to). Her care team has successfully begun to do this. Now we have to wait and see if it can continue. While this little bit of progress makes us feel like we can exhale a bit for tonight, we are very cautious with our optimism due to the emotional roller coaster we have been on since her operation. Her condition remains very serious.

Please pray that her stability continues and that we can see things move in the right direction, even if it is at a snail's pace.

Critically Dangerous

About 3am this morning we got a call from the ICU telling us to hurry down. It was not good news. They had maxed out Evie's blood pressure medication yet her blood pressure was still dropping. The doctor was essentially telling us that Evie probably did not have much time left. We spent the morning in bitter tears as we watched and waited. Several hours passed and the morning round of doctors came. Assesing her situation, they noted that her bleeding is mostly stopped. They decided that Evie could possibly have one more chance if they put her on the ECMO machine again. We consented.

So Evie is so far stable on ECMO. The danger of the machine persists, and in addition to that we just don't know the status of Evie's organs. We'll spend the next 3-4 days giving Evie's heart some more "rest" and then next week we'll try to wean her off again. Evie has been through the ringer, and so have her parents. We're exhausted and are running low on faith. Pray for all three of us.