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