Epic Pizza

Adam and I needed to have fun, so last night we went overboard. I think never having fun caused us to overdo it. We made 2 cans of black bean dip, 2 pizzas (1 with half Hawaiian, half meat-lovers, and the other with veggies), and a cherry cobbler. Then we played Left 4 Dead 2 for two hours until we were practically falling asleep. Afterwards, we watched Pixar shorts on You-tube and went into a pizza-induced coma until just now when I woke up and decided to share some good news.

Elijah was over 6 pounds yesterday. They are scheduling his surgery week after next (Scheduling! That means they are making a schedule!). They will have his operation on either Tuesday the 19th or Friday the 22nd. That's as long as we don't have a set-back.

Possibility for set-back aside, it's wonderful to have a time that I can get my head around instead of "forever and ever and on and on and never ever stopping." They say to expect 3 weeks after his surgery (barring complications, always, always barring complications). Then, home. If he's not home by August, I'm going to start picketing outside the hospital (with signs that say "Set Elijah Free," chanting "No more set-backs" and singing "We Will Overcome").

I had a weird dream the other night. I dreamed that a "discharge nurse" came and went into Elijah's room. She had the words "Discharge Nurse" written in what I hoped was red crayon on her name tag. Her hair was all askew, like she was wearing a wig, and she was wearing one of those traditional nurse uniforms with the little hat, but it didn't fit her well and it was covered in blood. She took Elijah and shook him, and said she was trying to see if he could go home, but I said, "He can't! He still has to have his surgery!" And then I woke up.

This is taking too long.

One of these days, we will be the family that gets to roll their little baby out in the special wooden discharge bassinet and drive him away, away from that place.


------Update------
6 pounds 4 ounces. Woot.

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.

-----

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.

Progress Report, In Brief

Elijah weighs 5 lbs 11 oz today. They tell us that he will have at least another 5 weeks in the hospital, but that doesn't really mean anything to me except that they expect him to leave one day. I've sort of settled into a comfortable routine at the hospital, so I guess things could be worse. One of my favorite nurses is on vacation for the next two weeks, which has seriously bummed me out. I'll be thankful when she's back.

I started having weird fears the other day. I wondered how being in the hospital for this long would affect Elijah developmentally. I worried that he would sit up for the first time in his hospital room, or that his first words would be "IV Support" or "Urgent Message: Vent Disconnect." Being his mother, I have gross over-estimations about my child (the cutest baby in the world) and the abilities that he (the smartest baby in the world) is capable of. He has been very alert lately, and I've worried that his limited surroundings might be under-stimulating him. Then I remember that he sleeps 16-20 hours out of the day and that maybe my fears are unfounded.

I'll give a proper update tomorrow. Right now, it's midnight, and I have to wake up in four hours to pump milk, so goodbye until the morning when I will sit down and write a real, substantial post.

Odds and Ends

Well, Elijah has had a fever and runny nose the last three days. He's still getting fed the usual amounts and hasn't had any problems so far with that. He's miserable, but it's not a set-back, for which I'm thankful. They diagnosed him with a blood infection, which they say is common when they remove PICC lines, so they have him on antibiotics (again), and they are watching him closely.

The day before he got his fever, we successfully breastfed for the first time. It was really exciting. I'll be glad when all my joyful moments with him aren't tempered by moments of pain. He's been in the hospital for 60 days today.

In other news, we are moving in with my mother in three weeks. I have been spending my free moments packing up our odds and ends and making runs to mom's to drop stuff off. Between packing our things, going to the hospital, and frequent breast-pumping sessions, it's been hard to find time to be "wife of the year," but I somehow have managed (smile). Adam and I have been working on his music project, and I was able to help him with lesson plans for his work the other day. All this while making meals. He rewarded me by letting me splurge on a haircut yesterday. We had to spend the morning negotiating length because of my history. Those who know me understand. I've been known to have a mohawk, buzz cut, pixie cuts, and other styles of all shapes, sizes, and colors (Phil was largely responsible for such lunacy.). We settled on a nice, jaw-length style with bangs and lots of layers. If there's a day in the near future where I look presentable, I'll take a picture of it.

I'm going to go exercise now. It should be easier now that I'm not hindered by a soccer-ball-sized belly.

You Know You're a NICU Mom When...

You know you're a NICU mom when...

1. You not only know how to change your baby's diaper and take his temperature, but you also know how to clean and change his ostomy bag, turn off the beeping noise on his IV machine, and connect/disconnect his feeding tube.

2. You don't have to ask what NPO, PO, Bolus, Bili, PICC, PIV, TPN, Dehis, Brady, Desat, Apnea, or Lipids mean.

3. You know better than the nurses do how your baby's surgery wounds, pimples, rashes, and fecal output have improved.

4. You do not find the cow decoration in your baby's nursery to be cute or amusing.

5. All of the nurses, receptionists, security guards, and shuttle drivers know you by name.

6. All of the nurses, receptionists, security guards, and shuttle drivers know your schedule, and if you deviate, they notice and say they missed you.

7. Your breast pump starts talking to you.

Warning: Whining Ahead

Elijah's room has a crib, 4 different monitors, a rocking chair, a recliner, a fridge, and a sink. It has no windows, but it does have a digital clock that marks hours, minutes, and seconds in large green numbers. I have come to think of it as the time box, the coffin where my day goes to die. Time loses all meaning in Elijah's room. The time box doesn't mean where the sun is outside, or when I should eat, or how long I've been there. The time box only means that if the first number hits 8, 11, 2, or 5, we must do something to the baby: change his diaper, check his ostomy, or, if he's really lucky, give him a bottle.

If I happen to emerge from Elijah's room and turn left, I can see out the window. I am always surprised by what I see, namely The Outdoors. If the sun's shining, I'm surprised that there is a sun. If it is night, I am surprised that the day is gone. Anything that happens in The Outdoors is novel to me because I forgot for a while that there was any such thing. When I am in Elijah's room, there is only that room and a box that sucks time up.

We are caught in a groove of waiting. There are no exciting reports or changes. He must get bigger, and that is all. Once he is bigger, it's time for his second operation, the one that puts his intestines back together. After the operation, we start over with his feedings until he lives off of the bottle again. I wish his operation was the magic threshold and we could take him home after that. It's just the first step in a new phase of waiting. It's been seven weeks today, with no projected release date.

On a lighter note, my husband made my first Mother's Day very special. He bought me flowers, made me breakfast, and took me to dinner. Elijah slept through our whole visit, which is good because it helps him gain weight. It was a nice break from the routine, and I really enjoyed having the opportunity to have a sane day. 

Waiting and Waiting and Waiting and Waiting

There was a Code Blue in the NICU the other day. For those of you who are unfamiliar with hospitals, a Code Blue means that a patient is in need of immediate resuscitation due to cardiac or respiratory arrest. I don't know if the baby made it. We passed the mother in the hallway on our way home. Judging by her face, it looked like bad news.

It is easy to forget where I am sometimes. The nurses do such a good job of creating a nursery atmosphere. All of the hallways are named like streets (Starfish Circle, Seahorse Street - Elijah lives on Dolphin Drive). Some of the rooms have swings, baby blankets, and mobiles, and you can hear music in the hallway as you walk by them. Then you see the babies themselves and remember why we're all there. Some babies weigh as little as two pounds. Many can't breathe by themselves. Every moment they are alive is a miracle by the standards of medicine as recent as 50 years ago.

My heart broke for that mother, not because I couldn't imagine her pain, but because I could. I had envisioned that phone call so many times when Elijah was at his sickest. I knew the anguish of watching him stop breathing and imagining life without him. I grieve with her.

I also forget that Phil's gone, not just some of the time, but most of the time. When I remember, my gut feels like lead. Maybe it's just tiredness that makes me forget these things. Or maybe I am coping. It's always better to go through life without constantly dwelling on how bad things are.

Elijah has his very own crib, so we are out of the isolette. If he keeps up his body temperature, he can stay out of it. He also has a bouncy seat. His crib has a mobile that plays classical music, and he's loving it. It calms him right down. He weighed in at 1.91 kilos last night (about 4 lbs 3 oz). We have 1.1 kilos to go before we put him back together.

There are very few things that I count as a success or as progress. Weight gain is one of them. I don't get excited about him coming off the feeding tube or the IV except that those events give him comfort, if only briefly. He came off the feeding tube for a few days, but he had to go right back on it when he didn't tolerate his food well. That is not a victory. Taking out the IV will be nice, even if it just gives him a break for a while, but it is not a victory. Gaining an ounce is a victory. Wearing clothes is a victory. Those are things he won't move backwards from. My Aunt and Uncle gave me very good advice, having walked this path themselves. They told me that every day will feel like two steps forward and one step back. We had a few backward steps the last couple of days. I've become better at managing disappointment, but I'm still desperate to get him home, away from the world where babies stop breathing and their hearts stop beating and their mothers stand helplessly by.