Wednesday, February 25, 2009

One week update

OK, so we go two days without an update, and you all let us know! Thank you for being so diligent in following the blog, and supporting us.

Eli is one week old today, five days since open heart surgery. He continues to make progress, and we're so thankful. It's very easy to start seeing this stage as a quick setback, and forget to recognize how fragile he still is. This is still the ICU, his nurse is still dedicated to only him, and he's still being pumped with (looking across the room) 14 different medications. He's still heavily sedated, and he's still on a respirator.

Monday night/yesterday morning represented the peak of his swelling. Fluids are being retained all over his body. This is completely normal and expected. As his surgeon stated "When you smash your thumb with a hammer, the entire thumb swells. We just hit his entire body with a really large hammer, and he's swelling." At the peak of the swelling, he couldn't even open his eyes. It was most obvious around his neck and the back of his head. Late yesterday, they finally started the diuretics to help speed the process, now that his body is starting to eliminate these fluids on its own. We've seen his eyes several times today.

He's off the epinephrine, which is adrenaline, used to increase blood pressure. He's managing that himself. His respirator is now feeding 23% oxygen, only 2% higher than normal air. His blood's O2 saturation is showing 85% as I type this, exactly where they want it to be.

They've taken him off of fentanyl, a sedative, because he's building a tolerance, and have changed it out for an alternative.

He had an ultrasound/echo of his heart today. The cardiologist says "his echoes look good!" There are so signs of obstruction in either the LVOT nor the VSD. Praise God for those! We so desperately hope Eli will be able to maintain a 3 chamber heart, and these two areas are the deciding factors. Please continue to pray for these, specifically.

The rest of the equation is Paige and Tanya and I. Paige is handling this whole thing very well! She's managed to learn how to sleep with us in the room. She's not had any full-on meltdowns. We're recognizing how helpful it will be to have on-site babysitters once the out-of-state grandparents go back home. She gets play time from 10am-lunch, and someone to watch her sleep from about 1:30-4:00. So many have asked how they could possibly help, and this has become our first obvious need.

Tanya and I try to make time for each other, as best we can. We're in a Catch-22. We so desperately enjoy and even need our friends. Every visit is such a treasure for us, honestly. We're also recognizing that we're not making time for just Tanya and I because of this. For now, we're still waiting for all the dust to settle. Half of the grandparent support will be gone by this weekend, so that will throw a new twist into the equation. We're hoping to be able to finalize our system after that time. Hopefully, that doesn't read as them being a hindrance. There's no way we could do this without them. But, in a week, we have to learn how to do this ourselves. Maybe anchoring ourselves into specific "down time" with Paige will help stabilize our day, as well. We're oncomprimisingly dedicated to each other, and set on making each other a priority. Without a solid foundation, I can see how destructive this is known to be on some relationships.

One other final note. The helipad is real close to RMH, so we hear every landing and lift off. Now being on this side of the trauma, and seeing the families shattered as they watch the Life Flight, we're torn every time we hear that sound. It's a horrible scene, yet we're so thankful for the technology that makes that level of transport possible. We hear stories of accidents and crisis from other RMH residents, and we can only imagine how much worse that must be, as compared to us being able to prepare for 4 months for what's to come. Our hearts go out to those families.

What to pray for:

Eli's continued recovery, obviously.
Specifically, that the LVOT and VSD stay the course, and are a permanent solution for him.
That Paige continues to feel loved, special, and continues to handle this whole thing so well.
That Tanya and I bond even closer through trials, rather than build walls of defense.
That God continues to be glorified by the entire process. That's what this is all about.

Monday, February 23, 2009

A Note About Visitation

We've been so completely humbled by all the offers for support, and all the visitors. Seeing friends and spending time with you guys is a life line to us. We continue to cherish that time.

We've been requested by the hospital to restrict visitation a little tighter than we have been. As we've been reminded, Eli's in the ICU for a reason. He's extremely fragile right now. His condition continues to improve daily, and we're so thankful for that. However, for a while, we're limiting his visitors to immediate family, only. We recognize everyone's efforts as true care and a desire to be supportive, and that makes this restriction only more difficult. We remain desperately appreciative of simple "time" spent with you, and look forward to more of that, in lieu of seeing Eli. We will work our best to keep everyone updated on his condition.

Today is the peak of his swelling. It's so cute, his face has swolen up so much, his ears are folding up as the swelling surrounds him. Soon, he'll be started on a diuretic to bring that away. He also started TPN today, which is a "full nutrition" food, via IV. He also started lipids today, fats. Epinephrine is down, which is adrenaline to bring up blood pressure. He's starting to manage that a little better himself.

I'm running out of battery power, I'll post more soon.

Playtime with Paige

One of the biggest hurdles during Eli's recovery is trying to figure out how to be a parent to two kids who can't ever be in the same place. Eli's in the PICU, and Paige is anywhere that's not in the hospital. It's RSV season, so she's quarantined away from this place. A friend of ours is a charge nurse in the PICU. For the last several weeks, we've been using her information and expertise to prepare us for this ordeal, as well as possible. One of the things she said was "We're the most expensive baby sitters in the world, and we're good at it. Let us take care of your baby, and make sure you take care of yourself and Paige."

This morning, we invited her friends to meet us at Pump It Up. There's one just a mile from CHCC! $7/kid and all adults are free. What a deal! We had a blast... but I may have gotten a little TOO into it. :)

Saturday, February 21, 2009

The next day

Eli's doing extremely well today. All his numbers are good. They've started to reduce his sedatives, and he opened his eyes for us today. He also got a little bath, and had his hair styled. We're in a season that will be filled with both nice weather and storms. Today, the sun is shining. Here's our little hero this afternoon.

Surgery #1 Review

Disclaimer: Understand the photo might be tough to look at. However, seeing it in person, I can tell you the photos make it look worse than it is. When we started looking at this stuff online, weeks ago, we were amazed at how much was going on. Then, seeing it in person, our reactions were along the lines of "Oh... it's not as bad as we feared." Then we see the photos we took, and realize it looks like what we've already seen online.

So... it's not as "unnatural" as it appears. We'll explain all that below.

Yesterday's surgery went well. There were some unexpected positives, and one minor complication. There were no problems with the three procedures they went in for. In fact, at this time, his left ventricle is doing the job it's supposed to do. All the blood into the body is being pumped from the left ventricle.

What they're watching very closely is the LVOT (left ventricle outflow tract), which is the area immediately below the aortic valve, which is the last valve before blood goes out into the body. This LVOT area has the possibility of tightening up and not allowing sufficient flow out of the heart. If this area maintains its current status, Eli will be able to retain his now-3-chambered heart permanently. Only the two atrium are combined into one. However, if the LVOT begins to tighten, they'll have to combine the aortic and pulmonary valves so there is only one outflow from the heart, effectively giving him a 2-chambered heart.

The other thing they're watching is the VSD (ventricular septal defect), the hole in the wall between the two pumping chambers. This hole is large, and they need it to stay that way. Typically, they would opened up this hole, just like they did on the upper chambers, but the defect hole was so large, they didn't need to. It also needs to stay large for the way they've replumbed the heart.

Pray for both the LVOT and the VSD to stay large.

The only complication was the re-attachment of where Eli was hooked up to the heart/lung machine. Once they patched up those arteries, one of them didn't want to stay closed. They stitched it a couple times before they finally had to repair it with some artery material from his left arm. Dr. MacDonald's only concern is the possibility that scarring could lead to some restriction in that artery, which feeds the brain. In his words, "But I don't suspect that will be an issue. Everything looks good."

So an explanation of what you're seeing below.... Eli is actually breathing on his own. The ventilator is there only to control the saturation of gasses he breathes. We breathe outside air, which is 21% oxygen. Right now, he's being sautrated with 60% oxygen. More oxygen attracts more blood flow, and they want the blood flowing through the lungs for healing and everything else our blood typically does for us.

The two large tubes resting on his belly: Those are chest tubes, and they are not that large going into him. They're about as big as a pencil lead, and are suction to help get rid of all the fluids. The blue coil of wire sitting on his chest are wire leads to his heart. They are there in case they need to pace his heart. They haven't had to use them, so far.

He has a few IVs. There are a pair of main artery trunks going into his navel, and another main trunk in his right wrist. You can see the one on his wrist with the red "Artery" label. I think we counted 16 different medicines going into him last night. These don't all come in individual IVs. Each IV input has a "T" so another can be tagged along right behind it. The collection of spachetti next to his right knee is part of this trunking system. All that mess combines down to one tiny IV.

On his right thumb and left big toe, you can see the flesh colored cloth. Those are bandages to keep the O2 monitors on. These are only touching the skin, not penetrating it. Running under his left foot is simply a catheter. He hasn't learned not to wet the bed, yet. Around his right calf is a blood pressure monitor.

It's a lot to take in, obviously. But this isn't nearly as invasive as it looks or sounds. Come by and see him, we'd love visitors to help us pass the time.

Here's Eli, only one hour after surgery and all the technology we're so thankful for.

Friday, February 20, 2009

"Live" surgery updates post

This post will be constantly updated in the next few hours to keep all of you updated. We'll use this post to broadcast to all who are listening and supporting us so greatly.

9:00 - Eli has entered into surgery. During our last visit with him, he looked better than he ever
had. His nurse commented that his blood/gas numbers look better today than they have. We are extremely impressed with every meeting we've had with his surgeon, Dr. MacDonald. He's so unbelievably thorough in all his details and communication. I've tried to pry into his personal life to get a feel for the man, and not the doctor. He enjoys running. Today, I asked him if he ran this morning. "No, I swam today," he smiled.

We're going to go get some breakfast now.

11:00 - We received the first of several phone updates from the nurse inside the OR with Eli. He's doing very well. We had already been informed that ultrasounds and other imaging work very well, but there's no substitute to actually seeing the heart and anatomy with your own eyes. Because of this, we had to acknowledge the possibility that the full-blown Norwood procedure may still be necessary.

We've just been informed this is not the case, and everything is as they thought, from the ultrasounds. They will continue the surgery as planned. Pulmonary band, atrial septostomy, and bebuild of the primary aorta.

Thank you for following along and walking this with us.

2:00 - We got another call. Everything is going well. Eli is officially "on the machine" and they have begun the restructure of the heart. A friend took us out to lunch, and we're feeling very good. The sun is shining outside, the weather is beautiful. We're still wary for the rest of the surgery, and the coming weeks. For now, it's nice to hear positive news for a change.

3:15 - I've been working on getting some photography software on this laptop all morning. I finally made my way through a couple photos. These photos are the most recent photos of Eli, just before we sent him off.

3:30 - "Just letting you know everything's still just fine." How nice for them to take the time to tell us something so simple.

7:15 - "We're finishing up. We'll see you in the waiting room in a few minutes."

7:30 - Eli was transported from surgery to his room. We are waiting. These are some of the longest minutes of our lives.

8:30 - "He did well," says Dr. MacDonald. Most things were better than expected, and there were a couple minor complications. "He's on expected, normal amounts of all the normal medicines for someone in this stage."

We'll post more details as we gather the energy to do so. Thank you for so much support, once again. We couldn't do this alone.

Thursday, February 19, 2009

Black Clouds

Tanya and I are burnt, spun out, and frazzled. Overwhelmed. For four months, we've been learning and preparing for what was to come with Eli. We've had a chance to ease into this. Now he's here and the future has been realized. I don't know if it's a matter of everything settling in because we're looking the battle in the face, or an inability to hide behind denial any longer. To be fair, I really don't think we ever employed denial. However, as we receive more information today, the pot has begun to spill over.

Tomorrow at 8:00am is Eli's first open heart surgery. Here are some details, for those who want them. This being the first of at least three of these kinds of surgery, there are three specific goals for tomorrow's surgery:

One: Rebuild the main aorta, which is too small. This amazes me. Part of the main aorta is too small. They're going to cut out the small section, and cut the entire aorta free from the muscle that surrounds it, so that the aorta can slide freely within that muscle. They will stretch the aorta and sew the two cut ends back together. It will re-fuse with the surrounding muscle on its own.

Two: The pulmonary artery is the one that moves "blue" blood from the heart to the lungs. Eli's is completely normal, 100% sized. However, because the mitral valve is so small (4.5mm diameter versus 12-15mm, like it should be), the blood can't get back to the heart from the lungs as quickly. In addition, the hole between the right and left ventricles is very large. So... they are going to put a restricting band around the pulmonary artery to restrict flow to the lungs, but just a little. The restriction will force blood from the right ventricle to go through the hole in the heart, and into the left chamber. This will effectively create a bypass of the lungs, for some of the blood. Without this, there would be hypertension of the lungs, and they'd fill with blood.

3: They're also going to remove the wall between the left and right atrium, so the blue and red blood have a better chance to mix and relieve pressure off the areas of the cardiovascular system that can't handle it.

On another surgery, they will combine the two major pumping valves (one to the lungs, one to the body) into a single larger valve, and will finally turn the heart into a 2-chamber, one artery system. Blood flow to the lungs will be passive rather than directed. I'll know more about this process as we get closer.

Then, we learn today that Eli has thrown another significant curve ball into the equation. Eli has genetic mutations. It's extremely likely (not yet verified) that he has Holt-Oram syndrome, or "Hand-Heart Syndrome." This is a mutation in the TRX5 chromosome (that's just what the geneticist told us, I'm not that nerdy), which is the chromosome that controls the development of the heart and upper limbs at the extreme early stages of fetus development. We haven't verified yet, but Eli might have an extra joint in his thumbs. They're still opposed, but possibly longer. We won't know until the X-rays come back. These mutations are unusually common with congenital heart defects. There's even the possibility that they could be tied to underdevelopment of the brain, leading to significant cognitive issues. Whatever the truth eventually turns out to be, this only adds complication to an already extremely difficult situation. I'll share more as I learn more. We're told that any genetic mutation leads to more difficulty through this process. Great.

So the part that's tearing me to pieces:

We can rejoice that this technology even exists. The surgeon told us that 20 years ago, babies like this were sent home to enjoy the short time they had. I asked him if Eli would live 6 months without surgery, and he told me "Not a chance."

Each of these surgeries carries a 90% chance of survival. Dropping a body's core temperature by more than 30 degrees, intentionally stopping a heart, and trusting in a man-made machine to temporarily take over for the heart and lungs... is wrought with potential complications, it turns out.

We're told that 60% of kids who go through this make it to the age of 5. We've also come to understand that should everything go well, and without further significant change in technology, we should recognize the grim reality that we should expect to out live Eli, anyway.

It's been a tough day. Thanks for sharing in our pain.

I don't even know what to ask you to pray for. I'll trust the Holy Spirit to come through on his promise there. Just pray.

Bring the rain.

Wednesday, February 18, 2009

He's here!

Eli Ryan is here!

Born at 4:01 pm
7 lbs. 15 oz.
20.1 inches

Good color, alert, reddish hair =) He is oxygenating at 80% on his own, but they will still intubate and administer the required medicines. Keep praying, as this journey has just begun! Praise the Lord for Eli Ryan!

Good Morning!

Good morning anxious friends and family! This is Tanya's friend, Amy. Jason called this morning and said, "We get to stay!" I don't know many details, except that Tanya is progressing enough in her labor that they would like them to stay at the hospital instead of going home.

Please keep the entire family in your prayers today. We serve a mighty God and as we anxiously await Eli's arrival we know that he is right in the middle of God's perfect plans!

Tuesday, February 17, 2009

Still cooking...

Eli has decided he needs some extra time to cook, I guess. We were officially due on Sunday, the 15th. Here is what we know:

  • As of Monday morning, I was dilated to a 3, but was not effaced at all.
  • I have a few contractions here and there, but nothing worth timing or consistent.
  • I have an OB appointment on Thursday. So I'm sure we will talk then about what the next step is, provided he hasn't made his grand entrance yet.

Please continue to pray for Jason and me. This is waiting game is beginning to wear us down. The anticipation is very tiring and worrisome for us. The not knowing just keeps building up. We are ready to meet our son! :)

We will continue to update our blog as events begin to unfold.

Saturday, February 14, 2009

New Camera

Paige got a new digital camera from Grandma and Grandpa Salt. What a long way technology has come, when you're giving 2-year a digital camera! After they spent some time getting her to understand how it worked, she was off to the races! She takes it with her everywhere now. Here are a couple of the shots from the first "roll of film." These are all uncropped, to properly display her entire creative eye.

Thursday, February 12, 2009

Coveting your support

In regards to you being at the hospital when Eli is born:

We've had a lot of people ask us if we'd be OK with them being at the hospital for support when Eli is born. We covet your prayers and support, and would be greatly honored by your presence with the rest of our friends and family at the hospital. Please feel welcomed.

We've already developed our phone tree. Here's what we expect:

Once Eli is born, he'll be cleaned up, weighed, and all that normal stuff. He'll be put on Prostaglandin in order to keep a prenatal artery bypass open. This drug can cause respiratory arrest (apnea), so he'll also be immediately intubated as a precaution. The CHCC team will take over in the stabilization room, doing what they do. About an hour or two later, he will be transported to CHCC for more direct analysis of his situation.

We are currently in flu season, so no children are allowed beyond the first floor lobby. This includes Paige, and they're not even entertaining the idea of compromise nor exception. We've made special arrangements for Paige to meet Eli, so please be praying those work out.

We thank you for all the support you've all already offered. We are so thankful to be surrounded in love and support. We look forward to seeing you at the hospital. If you would like to be on the call list, let us know. Please also clarify whether or not you'd like to be called regardless of the hour!

Thursday, February 5, 2009

Preparing Paige

How do you explain to a 2 year-old that she is going to have a baby brother soon? I think we can talk about it all we want, but it won't truly be understood until that baby brother is here.
Then, how do you prepare a 2 year-old for a baby brother who is going to spend the first few weeks of his life in the hospital? AND totally change your world as you know it? We have always communicated with Paige about her surroundings. We talk to her constantly about things around her. Baby Eli is no different.
Ever since we found out about Eli, we've made Paige a part of the process we've been going through. We pray every night with her for Jesus to make Eli's heart better. She understands (as much as she possibly can) that Eli has owies on his heart, and that the doctors need to make it better.
Just the other day she decided to bring out her doctor play kit and help Eli herself. This simple pretend toy has been so helpful in Paige's understanding of what might happen over the course of the next few weeks.
Here are a few pictures of her making Eli better. Now mind you, she thinks Eli is in my belly button. She talks to him through it. She thinks he's going to come out of it. She gives him shots through it. It's pretty cute!
Please pray with us that Paige transitions well into big sisterhood. She has to make many more adjustments than most new big sisters.