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.

Friday Night Update

Here's the recap and status for now...

THE GOOD:

• The bleeding is mostly stopped/contained
• Evie has stayed off the ECMO
• The doctors and nurses are not overly worried about her vitals for now
• She's still with us!

THE BAD:

• Evie still has two small defects that could hamper heart function (a small VSD and a leaky valve).
• Evie remains on a near maximum dosage of medication to maintain her blood pressure. If she struggles there is little room for them to do much else.

I don't know how well to articulate all this with written word, but we really dodged a bullet today. Going into the surgery Evie was not given very good odds and then when they still struggled to make a repair in the latter half of the surgery it seemed like "the end". We count her survival as a miracle and I think her doctors do too. The chief surgeon has always been very "matter of fact" with us and has never sugar coated Evie's status, but even he emerged from surgery very glad for the results.

For all this good news there is no getting around the fact that Evie remains in a treacherous position. Her surgeon, while happy with the results of her surgery, always is sure to remind us that "bad things could still happen." We know this, but we will still choose to be grateful. The next 48 hours will be telling. We'll update more later.

Where we are at now

The surgery is complete. It got very hairy in there for a while. The surgeons made their fixes and when they began to warm her up to do the cardiogram and see how well it went, they discovered that her "hole" (VSD) was not closed. We were very frustrated. They were very much running out of options but they decided to go in again but through a different valve. It was a serious and scary time. The outcome: her VSD is mostly closed, she has some "leakage" between her ventricles, but her heart is functioning without the bypass machine. There is a lot of bleeding right now that the doctors are working hard to fix.

To break it down more simply: We were in a very tough situation going into surgery, we were even in a tougher situation when they had to attempt a second fix, but for her to survive and to be off the machine (for now) is as much as a realist could hope for. So this is good, but we are far far from out of the woods. Her bleeding is serious and her blood pressure is being sustained by a near maximum dose of drugs.

That is where we are at right now. We thank God that we have not lost her yet, we still fervently pray that she can overcome the many remaining obstacles. Pray that her bleeding stops and that heart function returns safely. She is still in serious danger.

Surgery

We spoke again with Evie's doctors. They have decided if Evie is to have a chance at coming off of the ECMO machine, she will require surgery to fix the remaining defects. This will happen tommorow morning (Friday) at 7:30am and it will last 3-4 hours. The surgical procedures themselves are not expected to be difficult, the remaining question is if Evie's poor little heart will finally return to function. There are many unknowns, and there are many odds stacked against her; but if there were not a chance the surgeons would not even try. They believe she does have a chance, and that's why they insist on going back into the operating room.

We may sound like a broken record, but we still feel that there is power in prayer. We believe God listens. Join us in praying for Evie. She needs help from above.

A "Good" Night

ECMO is a frightening machine, but we live with a tension in that though it is so dangerous it is also so necessary to keep Evie alive. After working hard all day making adjustments to the machines and medications, last night the care team finally stabilized Evie's blood pressure and brought down her heart rate to more safe levels. When we woke up this morning we hurried over to catch the end of rounds and got another good report: she stayed stable all night. We don't understand all the details of everything, but when our care team is happy with results--we're happy with results. They will continue to make some adjustments to medication and machine to help her even more. Later today they will do another echo-cardiogram to look at the heart and after evaluating it, our surgeon will decide how soon he wants to take the next step. Nicole and I have always tried to celebrate the little victories, so we'll put last night in the "win column". Thank you, Lord. We're making baby steps, but we're far from out of the woods yet.

For Nicole and I: many people have expressed their desire to help us in some way, to bring us something. We are moved by the generosity of our community. As I said earlier, we don't always know what we'll need (outside of a cure for heart defects). What we think we'll ask of people is to look at our "wish list" and if you want to help us out with any of these things, give us a call first so we can let you know for sure that we still need them. With such a kind and generous community surrounding us, we don't want to be inundated with more stuff than we need.

Matt Needs:
2 pair clean men's athletic socks
2 pair clean boxers (xl)
Someone to pick up my guitar from Geoff Benge's Guitar Shop at 3551 N Damen (I'll work out the details with whoever wants to do this).

Nicole Needs:
1 Travel bottle of Shampoo
1 Travel bottle of Conditioner
2 pair women's athletic socks

As I said, we really recommend that you give us a call first if you want to bring us anything. We're slowly figuring things out, so we'll keep you posted of any additional needs. We are grateful for the deep care people have shown to us so far.


UPDATE: We have recieved all the things that we need for now. Thanks to you all. Evie remains stable and we will not know till later this evening anything more about her cardiograph results.

No News

Evie's condition has not changed much these last 12 hours. She remains on the bypass machine (its called ECMO) and the nurses and doctors spend most of the day adjusting the machine and her medications just to keep her "level". Additionally, she is now on a kind of "dialysis" just to give a little extra help to her kidneys. We are glad that she has not worsened, but it is discouraging that she is not improving as the longer she is on ECMO the greater she is at risk for brain bleed or infection.

So bad right now I just want to hear the doctors say, "She's getting better. She'll be off the machine soon. Soon she'll be awake. She's fixed. You can go home." As hard as I try to believe... it still feels like a fantasy. Its difficult to not want to give up, but Evie deserves better. If it weren't for our love for her, we wouldn't hurt this way. Because of our love for her, we have to keep hoping. Its all we can do...

We said goodbye to our parents this morning and sent them on their way. As difficult as it was for them to leave, we believe that it was necessary for them to go to be with their own communities and wait with us there in those places. Nicole and I slept at the hospital again last night. We don't anticipate leaving again tonight.

We had a few visitors today and their company was helpful. I am aware that some more are on their way tonight and tomorrow. We welcome them. We are just living here hour by hour, so we aren't very able to plan much, but if you do wish to come visit--please first give us a call to make sure we'll be around. Thank you to all.

Trying to Hope

Evie made it through the night, which is a victory by itself. The nurses and doctors said that her vitals have improved some since being on the machine that supports her heart and lungs. It is our understanding that every moment that passes with her staying steady or improving is a step in the right direction. However, it is important for us to remember that she is being fully supported by medication and machines and she is still in critical danger. Last night before bed we pleaded with God to have mercy on her and give her a miraculous turnaround by morning. While this did not happen, we are still giving thanks that she is still with us and not declining.

Today we are finding that we don't know what to do with ourselves. In the NICU we had the privilege of spending all the time we wanted with her, and even got to hold her much of the time. Time flew when we got to be with her. Now, we can barely be in her room because things are so intense that we can't risk getting in the way. Plus, she is fully sedated and looks very terrible She's bloated, her chest is open (but coverd with gauze), and she is hooked up to machines. It is hard to be with her even when we are allowed. The question I have been asking myself since the beginning of all this is "How can I be her parent now?" Now when she is so removed from us that question is even more difficult to answer. We find ourselves just sitting and waiting, and trying to hope.

We believe in God's ability to heal and her ability to fight. Please pray for her to have strength.

The Fight of our Lives

As many of you have now heard, the surgery did not go as well as we hoped. In fact, we find ourselves in a very grave situation. Here are the facts:

1. Evie's surgeons successfully switched her arteries, fixed her aorta, and patched the hole in her lower ventricles. They were pleased with their results.
2. During the surgery the doctors discovered the pulmonary artery would also need a patch, so they continued to work through the afternoon on that. Unfortunately, in their work to sutcher (sp?) the artery, another small perforation was made in her heart chamber.
3. The doctors would have tried to fix that as well, but she had now been on the table for hours and her heart had been through so much that continued surgery would be very risky.
4. They decided not to pursue that fix at this time, fearing that her heart would be too week from all the surgery. They were correct. When she was weaned off the machine it became clear that Evie was in trouble. Her blood pressure and blood oxygen were frighteningly low.

Thus, the situation we now find ourselves in is a desperately sick little girl whose heart is too weak. She is back on a machine with the hope that a few days "rest" for her heart will help, but because she is in such a volatile situation right now with blood thinners and such, this is now the most dangerous position Evie has ever been in and she is at incredible risk.

The good news: If Evie can make it through these next few days and build up some strength in her heart, the remaining surgery should not be difficult and she will go on to live a full life.

Words cannot describe the depths we find ourselves in now. In fleeting moments we can cling to some hope, but at this time they are few and far between. There is little that we or even the physicians can now do for Evangeline. God help us.

It Begins

About 11 minutes ago Evie was rolled in to the operating room. Now begins the six hour procedure to open her chest and transpose her arteries, patch her narrow aorta, and repair the hole between her lower ventricles. Preparing her for her surgery was an emotional experience. We do wrestle with some fear and we shed tears. When we are most confident, we also shed tears at the thought that it will be up to 48 hours before Evie will see and hear her parents again. We place her in the hands of God trusting and hoping that his good gifts of miracles and medicine will accomplish his good will.

I was able to survive last night and sleep with this on my mind, "Can anyone add a single hour to [her] life by worrying?" (Matthew 6.27). So instead of worrying, we will just attempt to wait.

Third time is a charm

We just heard that Evie is now tentatively scheduled for surgery tomorrow morning (Tuesday) 7:30 am. As we have learned twice now, these things can change. Even though we've done this waiting once already, Nicole and I remain very anxious as the time comes close again.

Here is a more recent picture...

A change in plans...again

Evie was supposed to have her surgery this morning, but she has been rescheduled once again. We were told this would only happen if they needed to do an emergency transplant on another child during the night prior. It turns out, that's exactly what happenend last night! It is wise of the surgeons to wait until they are fresh and rested to do Evie's surgery, and I completely understand why it is necessary to reschedule, but I'd be lying if I said Matt and I aren't severely disappointed. It is hard to keep preparing for her "big day" when it keeps changing. We'll update when we know the new schedule.

The Good Girl

Saturday was mostly a good day. Evie is much less fussy and she seems more comfortable. Last night she had her gorgeous eyes open for a long time, she also was making some funny faces. Nicole and I were energized by the chance to "play" with her a little bit as she is the most alert she has been since last Sunday. Her vitals have been impressive--no breathing problems, good heart rate, and good pulse-oxygen.

Friday night we had Evie baptized. Pastor Ryan was very kind to hurry down from Lake Geneva even after driving six hours home from Iowa. It was a wonderful and moving moment. We originally had considered baptizing Evie this spring, sometime in the Easter season. But with both sets of grandparents here, we felt there was no time like the present. We wanted everyone to know that we were not baptizing her out of fear for her destiny (that is sometimes a reason one would baptize a baby in the hospital), but as an act of confidence and faith--baptism is a sacrament for the living, it is the visible sign of God's grace. And God's grace is real in Evie's life. Last night was a celebration.

Saturday morning we met with the other surgeon who will be doing Evie's surgery on Monday. He said much of the same things that everyone else has said to us but he was also careful to remind us that this is a very serious surgery with inherent risk. It is challenging enough to move the great arteries back to their necessary spots, but the surgery will also be complicated by the need to fix some blockage in her aorta and to repair the hole they made between her lower ventricles during last Monday's cardiac catheter. Additionally, the surgery will be complicated by the fact that the aorta and pulmonary arteries are different sizes so they will need to be careful to be able to effectively attach them to the appropriate side of the heart. The surgeon did say that we had a 20% chance that they would have to use some additional synthetic materials to make the connection, and thus Evie would have to return for more surgeries as she grows. Obviously, we are hoping against this. The discussion was sobering, but as we have listened to the stories of other children who suffer through this and survive, we remain hopeful.

Surgery is scheduled for 7:30am CST tomorrow morning. It is estimated to last 6 hours. We continually ask for everyone's prayers that this surgery would be both safe and successful.

Quiet Time

As Evie has improved and stabalized, the nurses have given us the opportunity to hold Evie for a little while each day. I'm sitting across from Nicole and Evie resting together in a lazyboy--it is a beautiful sight. The baby is still doing well, but a few small problems these last 12 hours. Evie struggled a little bit with her breathing last night, so she's back on a small flow of oxygen. Similarly her blood oxygen levels are slightly lower as well, not dangerous, but lower. Additionally, Evie has mostly come off the sedation medication and is now both more alert and also a little more fussy. Its not a terrible thing, but it does remind us that she is in an unnatural and uncomfortable state. It will be nice when this is all behind us.

I was asked about how exactly this all happened after we had been discharged from Swedish Covenant Hospital with a clean bill of health. As I understand it, when babies are in utero we have an extra little blood vessel that does some of the circulating of the blood between the two chambers of the heart. About 24-48 hours after birth, this vessel naturally closes. So when Evie was born, her heart was functioning normal as it has done for the past nine months. There were no murmurs for the doctors to defect until after this vessel closes. So it was only on Sunday after we got home that the defect in her heart started to make itself known. This is how Evie appeared so normal and healthy when she was born and yet now has such a serious condition. Allegedly, this is one of the more common types of heart defects in infants.

...wow. As I type Evangeline is opening her eyes quite a bit. I'm gonna wrap this up so she can take in her dad's mug. Hopefully that won't do any serious damage to her ;)

Happy Thanksgiving

If you asked us Monday if we'd ever be able to say that this is genuinely a happy Thanksgiving, we would have said "no way." But Nicole and I are able to say that. There are many things to give thanks for. Our parents and in-laws made it in safe last night, and proud grandparents were very glad to meet Evangeline. "Auntie" Adrienne came down yesterday morning to spend the day with us, and her pressence was a blessing; her's along with many other kind visitors who have prayed with us and spent time with us.

Nicole and I begin this day feeling well. We are greatful to my friend Dave Healing for putting us up last night at his house here in Lincoln Park. So far we have not yet been able to sleep back in our own apartment. For one, even when traffic is good its a 20 minute drive. But perhaps more difficult is the fact that all of Evie's things are as we left them on Monday morning when we thought we were off to a routine pediatrician's appointment. At this point, we're not ready to be there again yet. We do believe that after Evie's surgery we can return to our house and sleep peacefully, as we would then just be joyfully waiting for her recovery. It would be like the waiting during the pregnancy again. Indeed, this surgery is Evie's second chance at life. Thank God for second chances.

I'll remind everyone again that her surgery is now scheduled for Monday. Many members of our North Park community had planned to fast and pray for Evie on Friday to coincide with the surgery. I'd encourage them to still do that on Friday, God's faithfulness is not bound by time :) Some have asked about how they can help or if we could use a hot meal. At this point, we spend about 21 hours a day here at the hospital so hot meals will likely go cold at home. We will probably be most grateful for them next week after the surgery when we will likely be spending more time back at home while waiting for Evie's recovery. Everyone's thoughtfulness warms our hearts. This is a happy Thanksgiving.

A Better Day So Far

Again, defying expectations we slept a solid uninterupted six hours. We know people have prayed specifically for that, thanks.

Every day Evie has been improving. She is still off the breathing tube, she is more awake now. The nursing staff here in the NICU is absolutely fantastic. When we woke up to go visit her, we found her "cuddling" one of the little teddy bears we placed in her bed. Our hearts burst with happiness.

This morning we met with the Nurse Practitioner from the Operating room and she described in detail the surgery Evie will undergo. As she described it, Nicole says she felt like throwing up at the thought of such a massive and invasive procedure. Still, we were reassured by her optimism. In fact, we are very happy that the doctors expect to do everything in one surgery and all with native tissues.

The one dissapointment we've faced today is that Evie's surgery has been rescheduled for Monday. We are dissapointed at the delay, but at the same time this means the doctors are confident in Evie's stability.

I can never say this enough, but we thank every one of you from the bottom of our hearts for your loving encouragement.

Fear and Hope

Yesterday remains the worst day ever. That means today was not as bad. We celebrated some victories; last night's procedure has remained effective at stabilizing Evie's vitals. It is amazing to see how much color has returned to her face and how much vitality has returned to her body. This is good.

Defying expectations, Nicole and I actually got a good 6 or 7 hours of sleep last night (after going nearly four days without any). Though going home was hard, we also felt good to refresh ourselves with a shower and some clean clothes. Hurrying back to the hospital, we were greeted with a surprise. Evie has done so well she was extubated, and is breathing well on her own now. Not only are we happy to see her progress, we are now able to see more of her beautiful face. Finally, we are grateful that we've now had a full day to do some processing and we are somewhat less hysterical than Monday.

We are not without much pain and heartbreak. While we are glad for her stabilization, the two days we will wait for the surgery will feel like a lifetime. We also are torn; we look forward to the surgery as it is her only hope for recovery, but we also fear it for the inevitable risk of entering the Operating Room. Its hard not to feel totally messed up inside.

For as terrible as this experience has been, we've been overcome by the love and support from our friends and family all across the globe. Continue to keep Evie in your prayers.

Evie is beautiful. I'm posting some pictures below so you can see how she's enchanted the wonderful nursing staff here in the NICU. These are from Sunday. That marvelous and joyful time feels like ages ago, but with faith we look forward to more coming.

Your prayers are needed and appreciated

Many of you may have heard about what we are going through with Evie right now (thank you, Adrienne, for sending out that e-mail). Yesterday was by far the worst day of our 3 lives so far, but we are slowly becoming more optimistic. Here is what's happened so far:

On Sunday night we were home with her for the first time and things seemed to be normal and fine. She had a good meal at 8 pm, but was uninterested in eating after that, which concerned us. We called Swedish Covenant around 1am to see if they were concerned about this also. They explained that if she went 12 hours without wanting to eat that they would want us to come in (to make sure she wasn't dehydrated or sick). When morning rolled around and she still wasn't interested in food and was becoming increasingly lethargic we brought her to see her pediatrician. At that time, the pediatrician suggested that she go to Children's Memorial Hospital for treatment and observation as she could have an infection. They arranged a transport for her, but before that we had to take her to the ER.

In the ER, they were far more concerned about her status. Her vitals were low and she was losing her color. This began the most horrifying hours of our life. She was surrounded by many doctors and nurses who were simultaneously starting IVs, and oxygen while trying to warm her up. Before we left, she even had to be intubated. It was at this time that the doctors began to suspect that, rather than an infection, she could have a heart defect.

When we arrived at Children's Memorial Hospital and she was admited to the NeoNatal Intensive Care Unit. They did an ultrasound of her heart to determine what the problem might be. They were quick to give us a general diagnosis. There are a few issues with her heart, but the basic problem is that her aorta and pulmonary arteries are in opposite spots, making it so her blood does not properly oxygenate. Fixing this will require open heart surgery.

While all this news is devastating, we are counting our miracles today. First, I am so thankful that Evie refused to eat. Had she just seemed "tired," I wouldn't have been concerned about her until much later. Thank you Evie, for helping us rookies know that you were in trouble! Second, I am thankful that our pediatrician was concerned enough to send us to the ER and then Children's Memorial. Third, we are so abundantly blessed to be in a place where a hospital like Children's Memorial exists. Their expertise, positivity, and confidence inspires us to hope. Evie has already had a preliminary "minor" surgery to open a valve in her heart to help oxygenate her blood for now (a temporary fix until her big surgery). This was done through a vein in her leg last night. It was done swiftly and had exactly the desired result that the surgeons were going for, so we are also thankful and inspired by that. She is currently stable, and according to the nurses and cardiologist, she is doing very well. We get to see her whenever we want at her bedside, where we can touch her, talk to her, and pray over her. While its difficult to see her in intensive care, we are at the same time so greatful that she has made it this far. In so many places and ages, Evie would have been long gone.

Right now Matt and I are at our apartment for a couple hours to clean ourselves and regroup. It is heartbreaking to be here without her, since everything is as we left it when we rushed out to the pediatrician not knowing the day would bring such nightmarish events. But, showers and clean clothes have been cleansing for both the body and the spirit, and we are ready to return to her refreshed.

Please pray for us this week. The surgery is tentatively planned for the end of the week (Friday?). Pray that the Holy Spirit will work within her, around her, and through the surgeons' hands to heal our little girl.

The first day

Wow, only 24 hours as parents and we're total pros. Just kidding! We actually have a fleet of helpers here at the hospital so it makes it seem easy. We're going to be discharged soon, as both Evangeline and I are healthy. I think the reality of our new life will set in once we get her home and are on our own!

Lots of firsts: first feeding, first clothes, first bath, first poop and pee, first cuddle with mom and dad, and the list goes on!

As far as things for mom and dad go, we still haven't gotten much of the sleep we really wanted yet. I found that I was fairly obsessed with Evie last night so I couldn't stop looking at her to make sure she was OK. I'll probably be the same way tonight, but at least I'll have the comfort of my own bed.

Hope to have some more pictures up once we get home!

Hello Baby!

Evangeline Marie Gustafson Kennedy

Born: November 17th, 2007 at 11:13am
Swedish Covenant Hospital; Chicago, IL

Weight: 8lbs 15oz

Length: 21 in