Eight Years Ago

Alright, I have to steal the keyboard back for one post...

It was 8 years ago today that Jason and I walked down the aisle to vow before God our commitment to each other. I remember people asking me if I was nervous. And I remember very vividly being very calm, as I knew this was the man God brought for me to spend the rest of my life with. I'm certain that Jason felt the same.

Over the past 8 years, we have been through lots of things. Jason worked hard while I finished school. He supported me through my first years of teaching. When I had the spare time, he encouraged me to volunteer and work at the zoo. Now he works so hard to allow me to stay home with our kids. It's been a huge sacrifice for the entire family, but so worth it in the end.

Jason is the best daddy I could ever imagine to Paige and Eli. He loves to play with them, love on them, and grow them to know and serve God. There is no way these kids will grow up not knowing their Daddy loves them very much. As a mom and friend, it is amazing to watch Jason with his kids. I love to watch him play with Paige.

In this most recent storm we have endured, I can't imagine going through it with anyone else. Jason has been a rock and huge support for me through it all. As we have to make decisions and as we learn more about Eli's condition, I'm so glad we are in it together. Jason and I see so many things the same, we rarely have to discuss them in length to come to a conclusion and decision.

Reflecting on the past 8 years and what God has done in our lives, I know His work is in the middle of our marriage. Everything we have and will endure is to shape us to what God can use for His glory. Jason and I are in for the long haul. We have a vision for our marriage. We want to be 80 years old, walking on the beach holding hands, madly in love with eachother. The only way we can do that is by enduring the times we are in now. For better or worse.

Jason, I love you more today than I did 8 years ago. Thanks for being there to accept me as your wife as I walked down the aisle to you. I look forward to 50 more years with you, so we can be 80 and walking on the beach together.



Okay, you can have the keyboard back now...

Getting dressed and drinking milk

Eli is doing very well, lately. He's been moved to the "less-intense" side of the ICU. His old room was in a set of rooms designated specifically for high-needs cardiac patients. Eli had to give up his room for someone with higher needs. He continues to build up his breathing strength, but he's been extubated for almost a week now. "He's on his own," as the nurses say.

He's also starting to take milk from a bottle. He's not great at it, but he's getting used to it. They give him as much as he'll take in 15 minutes, then feed him the rest through his feeding tube. The bottom end of the feeding tube, incidentally, has been raised from his intestines all the way up into his stomach. While he used to have a direct shot into his "gut," all his nutrition now comes through his stomach like the rest of us.

We've had the opportunity to change a few diapers. What an unusual blessing this is, to finally get to change a dirty diaper ourselves. Today, we even put some clothes on him!

The medical staff has always refused to give us times and dates, because Eli dictates them, they don't. So while we don't have actual numbers, it seems very fair that we should expect Eli home before Easter. This will raise a few new concerns we hadn't considered. Eli has to stay healthy. He has another surgery some time this summer, and to get sick before then could be a major set back.

This has led us to an unusual realization. We've tried very hard to keep everyone as updated as possible, through this blog. There are so many who are reading, and trying to stay informed, to let everyone know individually (letters, phone, whatever) would have been impossible. This blog has served as a wonderful piece of therapy for us, as well. The transparency we've been afforded has been great. In fact, we hadn't realized how tuned in most of you were until recently, when we started talking about holding Eli. We've been put into a really hard spot. We now recognize how closely you've all been following, and how attached you've become. So many have become excited about finally getting to meet Eli and hold him, and all those little things that make babies so great.

Having pulled you all in so closely, we're now forced to ask everyone to keep a bit of a distance, in a manner of speaking. There are two reasons behind this. First and foremost is Eli's continued health. The more who hold him, and love on him and everything else... the more chance he has of getting sick. In addition, he's still a little overwhelmed by human interaction. It doesn't take much to get him worked up. Then his heart rate increases, his breathing accelerates, and his blood/oxygen saturation begins to drop. You and we have red and blue blood, Eli has all purple. We're used to 97% oxygen saturation, he's used to 85%. When he gets worked up, it drops into the 60% area, and we've even seen it drop into the 40% when he's extremely worked up. When we get home, we're not going to have all these special monitors any more, and we're going to have to learn how to read him ourselves.

Between these needs, and his need to stay healthy, we're going to keep him a little isolated. We still intend to be in public, we're not turning into hermits. You should expect to see us at church every week, and at the grocery store, and so on. We don't want people to avoid us, by any means. We just hope we don't offend anyone when they ask to hold him. And this brings us to our second reason for some space... we need to figure out how to be a family, finally. What's going to happen with Paige, who's been a role model child with constant attention? What are sleeping arrangements going to be like? What will his needs be, and will Eli have special requirements?

To make a long story short (I'm not so good at that, am I?), we still need all of you. Please continue to call, write, and even visit us. But also please also give us some time to understand how to care for a very fragile little baby before we're as reckless with him as we were with Paige (I still laugh when I think of how much we used to scare some of our friends with how daring we were with her). There are always adjustments to be made with any new baby, his will just require more attention.

The pictures above are from today, when mommy was bottle feeding him.

Hold him in our arms

Eli was extubated again today. I think we're going to stick with it, this time. He still has an IV in his left foot, but there's nothing tied into it right now. He still has the feeding tube, and an oxygen feed to his nostrils.

The only drugs still being pumped into him are methadone and valium. These drugs are used for weening him off the Fentanyl and Ketamine he's been on for the last 5 weeks. The latter drugs are opiates, and create a dependency. Without a gentle ween from them, he will go through severe withdrawals. Because he was on those drugs for such a long time, the weening process will take a little longer than usual. We've not been given any timelines, but my understanding is that we should expect roughly a week of diminshing doses before they're gone. The potential upside is that we might have the opportunity to begin teaching Eli how to eat while we go through this, rather than wait for him to head down into regular care. Today, he had good control over sucking on a pacifier, already.

We held him today, finally. He stayed in Tanya's arms for a couple hours while I made the drive from work in Bakersfield today. Then, he slept for over an hour in my arms. We finally have a little baby. A real, live, red-blooded (ok, purple blooded at this stage in his life) human being. More than ever, now we want to take him home and begin showing him the world.

Possible Extubation: Round 2

Eli's been doing very well on his lung exercises this week. We were just told that if tonight goes well, he'll be extubated again tomorrow. Tanya and I are a little gun shy about this, because we've seen him working so hard during his sprints. We're going to have to trust the doctors, but our fears of him not being ready continue to dominate our thoughts.

Please pray that Eli is ready and does well.
Please pray that Tanya and I get decent rest. We're both so constantly exhausted.
Please praise God with us that He has chosen to use Eli to bring glory to His name already.

A whole month

Can you believe Eli came into the world just over a month ago, already? Today marks one month since his first surgery, when he was only 2 days old.

After having to be re-intubated, Dr. MacDonald warned us that this week would be a long, difficult week because we wouldn't see any changes. All of Eli's changes would be happening on the inside. His lungs would be strengthening, his heart would be healing, and so on. However, we're not going to see any changes, so it's going to feel like we're stuck for a short bit. Tanya and I had already realized this ourselves, so we've sort of hunkered down to prepared to see... nothing.

Luckily, Dr. MacDonald was wrong! This week, Eli made some of the biggest visible changes yet! Sure, he's still intubated, but he's lost so much fluid and has become so much smaller! His head is finally larger than his chest again. We can see ribs when he breathes deeply. He has little arms and legs. His legs even fold in now, so he looks like a baby when he's sleeping, rather than being spread eagle because he was so bloated. He looks like a little baby! Before, many of the nurses would stop in and comment on how cute he was. Yesterday, the custodial staff was in there looking at him, making the same comments. We're awfully proud of our handsome "little man."

They've also taken out all catheters! Both of the last two chest tubes and the bladder catheter are gone. He's using a diaper, just like a real baby. And we don't have to change it, they do! The only tubes still in him are IVs in each wrist, and the IVC (IV line, direct to heart) in his belly button. The number one concern on his care sheet right now is the IVC, and the fact that it's been in there 30 days. Typical longetivity for that line is about 10 days. Being in there an entire month now, it's a very serious threat for infection. They would have removed it already, but they're having trouble getting a good "central line" for Eli. He's a hard poke. The doctors are starting to chatter about the possibility of putting in a Broviac line. It's a little invasive, and requires a quick trip to the OR, but it's a lot safer and affords better care for Eli.

Update: The IVC was removed late last night, and they were able to establish a couple other IVs. The Broviac may still be in his future, but we'll cross that bridge when we get there.

For today, we're very excited about his progress. Here's the little guy.

Re-Intubation

Eli fought and fought, but breathing on his own was just more than he could handle today. He's been re-intubated, and they'll try again next week, probably. In the meantime, they'll start running him through some strengthening routines. His lungs and all the muscles needed for breathing just aren't strong enough yet. The reality is that he's been intubated his whole life, so he's never had to use those muscles. The exercises they'll run him through will help build those back up.

He was off the ventilator for 4 hours, breathing on his own. Although it was very labored, he was maintaining proper blood-gas levels on his own. He was just exahusted... (literally?)

The photo was taken during that time. We've all commented on how much he resembles Paige, but it's even more pronounced without the medical tape moustache, don't you think?

Extubation

Eli was taken off the respirator this afternoon. That was about an hour and a half ago. He's struggling quite a bit, so there's very real concern that he'll have to be re-intubated. His voice doesn't work yet, but he's constantly crying... a silent cry, but his face still shows the struggle all too well.

This is pretty hard to endure. I just want to do something, but I can't. A lot of you have made comments to us about our strength. It's now that we realize our strength was based around how well he has been doing. Now, with struggle in our face, it's not so easy to be upbeat. This isn't a life threatening situation. Worst case, they'll just have to put the respirator back in and try again another time. Still, it's agonizing to watch him struggle so much.

As I've been writing this, they took another blood-gas test, and his numbers aren't as good as they were an hour ago. They're checking oxygen levels in the blood, among other things. They also gave him some sedatives to calm him a little, and they're going to re-test his blood-gas in another 15 minutes to monitor the trend.

Please pray that God would allow Eli the strength to continue breathing on his own. Please also pray that our desires don't clash with God's plan.