A Real Update

So many things to talk about... I'll start with Elijah, since that's what everyone wants to know about. If you get bored after that, then you can stop reading once I finish.

Elijah, as I mentioned in the last post, is 5 lbs 11 oz, or 2.6 kilos. We have been waiting for 3 kilos so that we can put him back together, or about 6 pounds 10 oz. The reason he has to be that big is because they do not have equipment small enough to perform the operation on a smaller baby.

So what exactly are we talking about here? Well, I drew some pictures to help you out. I am not an artist - Adam is - so my pictures look terrible. Just be thankful I'm not making you Google this stuff because if you did, you might throw up that wonderful meal you may or may not have recently had. It's cuter in my drawings.


First, an orientation:

 Ok, so what are we looking at? This is Elijah's belly as it currently appears. If you can get past the oogy-ness of it, I will be happy to explain. On the left of the surgical wound is the fistula and on the right is his stoma. What the surgeon did was take the damaged piece of intestine out and brought the two ends of his intestines to the surface of his skin (they look like small red sausages... aren't you glad I didn't make you Google it?). The stoma is essentially where his small intestines end and the fistula is near where his large intestines begin. After his surgery until about a week ago, they had an ostomy bag fitted over his stoma and covered his fistula with only a very moist sort of gauze. His small intestines were doing all the digesting, the matter came out into the bag, and his large intestines lay dormant.

Last week, they made a change. Observe:

Now, instead of letting his large intestines lie dormant, they are taking what comes out of his stoma and "re-feeding" it into the fistula, causing his large intestines to get some exercise before they are reattached. It also tells the surgeons that his large intestines are healthy enough for reattachment because they are all moving the way they are supposed to. It also gives Elijah a chance to get more fluids and a few more nutrients from the milk he eats.

When he gets reattached, they will reconnect the stoma and fistula, minus the damaged bowel they removed because of NEC. The surgeons do not anticipate any long-term consequences to this experience, providing the surgery has no complications and excepting a pretty epic scar. 

We are really looking forward to him being put back together. He will be much happier for it. As it is now, he tends to mess up the rig they have him set up with, so they have to fix it, and he screams at them as a result. Kid has a temper.

They told us that he might be able to have surgery in about 2 weeks, but that is all relative to how big he gets and if he's healthy enough for it, so I'm not getting excited yet. I won't be excited until he's home. For now, it's just a joy to see him start to interact with his surroundings and get cuter every day.

He's a lot paler in photos. He looks less like Uncle Fester in person.

In other news, our moving date is June 23rd. Also, I'm the lead singer in the band my husband is starting. Yay.

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Time goes by very slowly when I want Elijah home. I have been challenged that, even though I'm anxious and generally miserable and I want this phase to be over and the new happier phase to start, this is still part of the life I have here on this earth. Even if it's only a few months, these are precious months that I have to live, even if I am anxiously longing for the brighter days ahead. Phil only had 261 months to live. How many do I have? I have chosen, instead of moping and wishing in anguish for a happy future with beautiful moments with my son, to make the most of this time, difficult and interminable as it feels. The Bible verse that came to me at this point was from Colossians 4:2-5 -

 Continue earnestly in prayer, being vigilant in it with thanksgiving; meanwhile praying also for us, that God would open to us a door for the word, to speak the mystery of Christ, for which I am also in chains, that I may make it manifest, as I ought to speak. Walk in wisdom toward those who are outside, redeeming the time [emphasis mine].


We call it the "Living Word of God," but it's times like these where it really feels alive... That even though I can't see God in person or hear His voice, He still uses his Scriptures, written almost 2,000 years ago, to speak to me in my situation.


I don't get to be mopey and sit around bemoaning my situation. I still have duties to my God that I must attend to, even in the middle of all this mess. Since realizing this, I have noticed all the things God has blessed me with, not the least of which is my marriage to an incredible man who walks closely by me in the middle of the worst crisis we've had together.


So, there's my update. If you made it through, wunderbar. I need to go figure out meals for the next couple of days and get ready to go to the hospital. I'll update again when I have free time and/or when something big happens.