Just for kicks...week 18/19

Today I am 19 weeks and 4 days pregnant. I've taken nausea meds twice today. Thankfully my heartburn and headaches haven't been too bad in the last few days.

I've been feeling swollen a lot in the last few days, too. They say that it's normal to have swollen feet by the end of a long day, but my hands and feet are most swollen when I wake up in the morning! They tend to feel a little better by the end of the day. Weird, isn't it!? The same thing happened with my last pregnancy around this time, and the doctor seemed to think it was odd, but nothing to worry about.

I've been getting weekly progesterone shots for the last three weeks, and they're going well. I was told that they can be very painful, but so far they're not so bad! I can feel the serum going in, and it doesn't feel pleasant, but it's never all that bad and I'm never sore afterwards. Yay!

I've been having "contractions" since about week nine (which seems crazy early) and they sure haven't let up. Since starting the shots, I'll have a few days a week where I'll only have one or two contractions. But some days I'll have five or more. And the average contraction lasts at least three minutes. Today I had one that lasted for over 15 minutes. It was insane.

I have another ultrasound on Friday, so we'll know if these crazy contractions are effecting my cervix at all. At this point I'm not too worried because my contractions are completely sporadic. Then again, that's how they were last time, only I didn't have as many. :S Last time, I would have maybe four a week. Ok, now I've scared myself a little!

Caleb now knows where the baby is, and loves to give him kisses. He likes to lift up my shirt and kiss my bare belly, and then he waves at my belly and says, "Bye-bye, baby" while pulling down my shirt. It's possible that he thinks my belly button is the baby, though...I'm not entirely sure. Either way, it's sweet how much he loves his little brother already!

It sounds weird, but I don't really feel like I'm pregnant. I think it's because I don't feel him kick very often. I felt Caleb kick at 15 weeks, and it seems that by now he was kicking up a storm. Maybe my memory is failing me, though. I know it's normal to not even feel the baby kick until 20 weeks, although I have been feeling this baby kicking for a few weeks now. It's just very faint and unpredictable. Sometimes I'll go a whole day without feeling any kicks. Mostly it just feels like I have a spider crawling on my tummy in the same spot, over and over again, for a few seconds. Sometimes it feels like a goldfish is inside of me, and its tail keeps hitting the side of my stomach in the same spot. It was never that faint with Caleb. It's just weird that these two pregnancies can be so very different in some ways, and so similar in other ways!

However, one thing that isn't so different is my size!

This was my pregnancy with Caleb at exactly 18 weeks and 4 days:

This is me this time, at exactly 18 weeks and 4 days, wearing the same shirt and pants:

It's ridiculously similar, isn't it?! Crazy. I just look more...tired. Can you blame me?

But I must say, I love what an over-sized belly does to my, um, rear end. Everything's just a little more...balanced. :)

And I kinda miss my long hair.

Surgery

I know, I know. It's been eight days since Caleb had surgery. I used to be so good about blogging a few times a week. And for that matter, I used to be somewhat witty. Now it's all medical and milestones, and I can hardly find the time/energy to keep up. Sorry.

So:

Caleb's surgery went well, which was to be expected. It was simple and pretty quick. They gave him versed to calm him down and keep him from having any recollection of the event, so he willingly went to the anesthesiologist and left us for the OR. I didn't even cry. Later, the anesthesiologist said that he reeeeeally fought having the mask with the anesthesia put on, and to never let anyone do anything like that without first giving him versed! I can't imagine how bad it would have been without being drugged first! Poor babe.

After knocking him out, they went in laproscopically through his belly button to the side of his stomach. Then they made the hole and popped a "button" in it. Then they covered his belly button with steri-strips, and the surgery was done!

He spent about 24 hours in the hospital, only needing pain meds once, which was a good thing. Why? Because Primary Children's Medical Center, one of the nation's leading pediatric hospitals, doesn't have dye-free children's Tylenol! RIDICULOUS! You can get it at Target!! Next time I'm bringing my own dye-free tylenol.

Anyway, he was a tiny bit tender for a few days, and by four days post-op he was 100 percent himself again!

This is exactly what his "button" looks like:

The round bottom part is inflated with water and is what goes into the stomach. Yes, Caleb literally has a water balloon in his stomach. You deflate it when putting the button in or taking it out. It's there to keep the button from coming out of place. The top part opens up so I can attach an extension tube to feed him through.

I'll show you a picture of what it looks like from the top (what you see when you look at Caleb's belly) when Caleb doesn't have to have it all taped down to keep it in place any more. Right now there's just too much going on on his little belly. It's hard to make sense of it all. And I have to get around to taking pictures, which is much harder than it should be.

We're all adjusting well to the new "norm." I'm still a little intimidated by the tube (will I know if something is wrong with it, like an infection, irritation, or unhealthy skin growth? Will I know what to do if it comes out within the first eight weeks after surgery--I'm supposed to take him immediately to the hospital after putting a special tube in the hole!). But overall, it's easier than the NG tube.

And I'm pretty sure Caleb LOVES it! Not that he loves being fed through it, he loves the tube itself! He now knows how to say "button," while pointing to his new button. The extension that attaches to the button that we feed him through we call his "tube." Whenever he sees it he says, "tube!" He chews on it or plays with it and when the tube comes open he says, "uh-oh!" When the feeding is done and we put the tube away he says, "bye-bye, tube." And other than his night-time feeds where we hook him up to the feeding pump, we "gravity feed" him using a 2-oz syringe. You take the plunger out of the syringe, attach the syringe to his tube, put the formula in the syringe, and hold it higher than the button and the formula just flows right in! Well, Little Cal loves to play with the syringe plunger. I "bop" him in the belly with it, and it is now known as the "bopper." He says "bop bop!" every time he sees it, and loves to "bop" himself in the tummy with it. Too cute, too cute. It might be weird that one of my son's favorite toys is a syringe, but I don't mind.

So, everything is going pretty smoothly at the Purser household. Caleb was weighed the day before his surgery and weighed 18 lbs exactly. I can't wait to see what he weighs next! Our feeding therapist wants him to be weighed twice a month...I think mostly because she's curious. :) I'm curious, too. He seems hungrier than ever before! He LOVES the seven solid foods that he's allowed to eat, and he can ask for most of them by name! It's so nice to know that, for the first time in his life, he can eat without being in pain. It makes the pain of the surgery entirely worth it.

And we just love seeing him without a tube taped to his face!

And we love seeing him loving food!

It's A Cowboy!

Yep, that's right! We're having another BOY!

I'm very surprised, since this pregnancy is so different from the last, but I'm OH SO HAPPY!

We already have virtually everything we need for another boy.

If (ok, ok, WHEN) this baby reaches Caleb's size, they can share clothes. If it was a girl passing up Caleb, it would just be sad. It's not so bad if it's a boy.

They will be only two years apart, so they can do all sorts of things together! They can do team roping, team penning...both are rodeo events, in case you didn't know. ;)

Caleb will take after his daddy and be pretty much the best big brother in the world.

Another Purser boy to carry on the name. (Did you know that out of all of Nate's Purser cousins, only three are boys? Good thing those three boys have a total of seven male offspring, including this new one!)

The only problem is that I'll be WAY outnumbered!

Oh, well. I love my boys. I couldn't ask for anything better.

Although I'd really like a full-term baby.

BTW, the ultrasound today was to check my cervix, and everything looks great at this point, despite all of my contractions!

P.S.--I'm still pregnant.

Photo taken at 15 weeks 4 days

I'll be 17 weeks on Wednesday. I'm getting huge. I'm getting heartburn and headaches galore.

And I still have morning sickness.

Yuck.

I take zofran at least once a day still.

On Monday I get my first progesterone shot, which I will be getting every week.

I've been having a lot of contractions (2-4 a day, sometimes lasting 5 minutes), so I'm going to request biweekly ultrasounds to make sure my cervix is holding up fine. Hopefully soon we'll find out the gender. :)

The other day I got my first stranger saying something about me being pregnant. That felt good. I like looking pregnant, not just like I ate a big lunch.

I may have felt the baby move once or twice. I could have sworn that I felt kicks, but they were too high up to be the baby, so now I keep second guessing myself. They say that you feel it earlier if it's not your first baby, but I felt Caleb kick at 15 weeks (because I had a cyst on my left ovary and he wedged himself in that corner and kicked and kicked and kicked for weeks. It hurt. I still felt bruised a week after delivery) and you can't get much earlier than that.

I feel bad that this baby is already in Caleb's shadow a little bit. Hopefully by the time he/she is here, Caleb's stuff will be a little more figured out and he/she will get the attention that he/she deserves.

Remember this?

How ironic.

New News!

7/13/13:  I've edited this blog post as we've learned more about this disease.  We were given a lot of bad information at the start, and although I want to have a clear record of exactly what we knew (or thought we knew) at the time, I didn't want someone to find this blog post through an internet search and think that the information was reliable.  The edited parts are in red.

So, after our ER visit on Sunday, I called the GI doc and she said it was time to start an elemental formula (a formula in which the proteins are broken down so they are easy to digest and there is no way a child could have an allergic reaction to it--it's brand name is Elecare) and use an NG tube (a feeding tube that goes in through the nose and into the stomach, and gets taped to the face to be held in place) because the formula tastes nasty and Caleb won't drink it. Seriously, he won't even take a sip. While he's on the formula he can't have anything else, because we need to get all of the allergens out of his diet.

What an NG tube looks like:

I knew she was going to say that, and that's what I wanted her to say because I knew it was the only way for Caleb to get better, but it made me very sad. It changes a lot of things. We can't eat in front of Caleb any more, because he'll want to eat whatever we're eating, and he's not allowed to. And NG tubes are traumatizing for babies and toddlers. It's terrible to be pinned down while someone puts a tube down your nose. And I thought that Monday would be his last day of ever eating a chocolate chip cookie or a piece of pizza, because he's sure to be allergic to either eggs, gluten, or dairy. I think I cried more than I have ever cried in a day.

Caleb's last chocolate chip cookie (for breakfast, while watching Mickey Mouse Clubhouse):

Caleb's last supper--Panda Express noodles:

So, Monday night Caleb got an NG tube and we discontinued all foods other than his formula. Tuesday morning he had pulled his tube out, so I put it back in. I brought him to WalMart so I could confine him to the shopping cart long enough for his feeding pump to pump in all of his lunch. And I bought myself a sandwich and ate it in the parking lot in the front seat of the truck while Caleb was in the back seat. Pregnant women gotta eat, too! Tuesday afternoon he pulled the tube out again, so I put it back in. It was miserable for us both. I'd say it was probably the third worst day of my life.

Wednesday wasn't so bad.

On Thursday we visited with the GI doc. We talked about a lot of things, and we got a lot of good news! Here is what we talked about/what is going on now:

• Along with his Elecare formula, Caleb can have green or clear gatorade, tuna, chicken, white potatoes, sweet potatoes, grapes, apples, and rice. The only thing we can add to any of these foods to flavor them is salt.  This is an arbitrary list and I have no idea how the GI doctor decided that these foods were ok.  Plenty of people react to these foods, so we're lucky that Caleb didn't react.
• Give him less formula at breakfast because he's more likely to throw it up, and give him 10+ ounces over the course of about 4 hours while he sleeps at night. Give him a total of 28 ounces or more in 24 hours.
• Keep him on the special low-allergen diet until he gains enough weight to be in the 5th percentile for his adjusted age. She said that he'd have to gain eight pounds at least. I don't know what chart she's looking at, because it seems normal/pretty good for a 17-month-old to weigh 26 lbs. At any rate, it'll take him a while to gain eight pounds (like...at least a year, I'm thinkin') and by then he'll still be small for his age. Either way, once he gains lots of weight we will add back one normal food every 3-4 days and see how he reacts. If he doesn't react well, we will see an allergist.  I don't know how the GI doctor decided this...two years later, at 3 years 8 months, Caleb still weighs just less than 26 pounds. We started adding foods back into his diet one at a time after he had a scope that was free of eosinophils.  His weight had nothing to do with it.
• Caleb will need a g-tube (a surgically-placed feeding tube that goes through the side of the tummy and straight into the stomach). It will be much less traumatizing for him and for me to have a surgery and one night in the hospital than for him to have a tube constantly down his throat and taped to his face. I was surprised how happy I was to hear that he would need a g-tube. I thought I would be scared, or feel like a failure. I mean, everything we have done ever since Caleb was 2 months old was with the goal of keeping him healthy without a feeding tube. He went a whole year without an NG tube. It's almost like we're back where we started, but really we're making huge strides! So, next week we have a pre-op appointment and the week after that is the surgery. Yay!
• Eosinophilic Enteritis is NOT hereditary!  Not true.  It is hereditary.  What a horrible lie to tell a patient.  I love our doctor for many reasons, but I've learned not to trust her.  That's sad, isn't it?  We just, once again, defied the odds and ended up with a major medical problem! (Did you know that there is a less than one percent chance of delivering a baby before 28 weeks? Yep. I think the odds of getting this type of EE are even slimmer.) Other types of eosinophilic disorders are hereditary (and more common), but not when they are in the small bowel. It's likely that he had a trauma to his small bowel at some point that irritated the lining of the bowel and it was never able to fully heal, making it vulnerable to the eosinophils, which are allergen-triggered. I'm willing to bet that the trauma occurred when he was about three weeks old and the NICU doctors wanted to add fortifier to his breast milk feedings. He couldn't digest it yet (he was too young and small) and he got filled with so much gas that his intestines got pushed up to the level of his nipples. Very sad. He cried a bit (which was weird for him) and he spit up. He almost perforated a bowel! They had to take him off of all feeds and put a tube into his stomach to suck out all of the air and food from his intestines. It was very serious, and very sad.  It's possible that this trauma was the "trigger" event that caused this autoimmune disease to start, but no one knows exactly what causes EGIDs, so it's just a theory.  Either way, trauma trigger or not, EGIDs are hereditary.
• Caleb's type of EE is NOT PERMANENT! YAHOO!  Lies again.  This doctor needs to read up on this disease.  This false information caused a lot of heartbreak.  This was the best news of all! Our GI doc gets about eight patients a year with Eosinophilic Enteritis, and she has had a 100 percent cure rate! Most patients get cured easier than Caleb, it seems, but she's still confident that he'll get over it with time and with the right nutrients. So, he WILL get to have chocolate chip cookies and pizza again some day! Yay!

So, there is a very detailed and somewhat long-winded explanation of where we are at now (and where we will be for a while).

Playing in the dirt while getting an afternoon "snack" through the tube:

He can carry his feeding pump and his formula on his back in this handy backpack (as long as there isn't a lot of formula in there to make it too heavy for him):

And again...

Caleb is sick. But this time I'd be surprised if it was a bug. Here is how it all happened:

On Monday I talked to the GI doc and we decided that the prednisone wasn't helping, so he got his last dose on Tuesday and we started a new acid medicine (I'm not sure why we started the new med...it doesn't make sense that it would help...it frustrates me).

Tuesday and Wednesday Caleb ate like a pro! I've never seen him eat like that before!

On Thursday, he refused to eat any solid foods at all, but he was still drinking plenty of pediasure and acting like himself, so I wasn't too worried.

On Friday the solid-food-strike continued. He was still drinking enough (but really, does he ever drink enough? No.) so I wasn't too concerned, but I decided to call the pediatrician just to be safe. I talked to a nurse who said to wait it out and call the GI doc (who was out of the office for the rest of the weekend).

On Saturday he acted normally (aka, not eating) but in the evening he threw up a significant amount and then fell asleep in the living room a few hours before bed. Then he threw up again. And again. Then he said, "all done." And threw up again. Nate and I cried. And we put him to bed.

That brings us to today. I woke up early for church (it was Nate's turn to stay home with Caleb, since Cal hasn't been to church since he started on the prednisone, because it weakens the immune system and he could get very sick...little tangent)...I woke up early for church, and I heard Caleb heaving in his room. He had no energy to cry (makes me wonder if he heaved all night long without anyone to comfort him. Sad.). So I patted his back while he retched and retched and retched. Nate slept on a blanket on the floor so Caleb wouldn't be alone. They were still there when I got back from church four hours later. Every time Caleb would drink water, he would throw up. If he didn't drink water, he would dry heave. And he would lay listless in our arms. He threw up so much that the blood vessels in his face all came to the surface and he had red spider veins all over his little shallow cheeks. So we brought him to the ER.

At the ER, they gave him an IV and took blood for tests. I insisted on doing the RAST allergy blood test (which they had never heard of...wow...I never thought I would need to have such unique medical knowledge). He would need the RAST testing done eventually, so I thought, "you might as well only poke him once!" Thankfully they obliged, even though HE RAN OUT OF BLOOD!!! Seriously. The vein didn't collapse, they could still flush saline into it, but there was no more blood to come out of it. It was sad. They went to great, terrible lengths to get every drop of blood possible. Then they gave him 100 ML of fluids.

Then the blood tests came back saying that Caleb was quite low on electrolytes, so they tried to give him 50 ML more of fluids, but the IV went bad. So, they had us give him 2 oz of pedialyte, which he scarfed, and when he didn't throw it up they sent us home.

Then he slept for two hours on the living room floor, he drank a few more ounces of pedialyte and a bit of raspberry sherbet, and we gave him a bath and put him to bed early. And he fell right asleep.

The cause of his ailment is one of three things: 1) a bug, 2) abruptly stopping prednisone, or 3) his EE is just plainly out of control.

It's likely not a bug, because he doesn't have diarrhea. It's likely not from the prednisone, because he was on such a low dose that the GI doc said that it wouldn't hurt to stop it abruptly.

So, that leaves us with lovely door number 3!! And what have we won, Stan!? A whole, new path that no one ever wants to go down! But I'm ready!

It's cruel to let a child suffer like this. I can't handle it any more. Caleb is obviously in pain and we can't expect it to go away until we get rid of the allergens in his diet. So, tomorrow when I call the GI doc, I will demand that we start Caleb on an elemental formula, that we have access to NG tube accessories in case he doesn't drink enough of the nasty-tasting formula, an appointment SOON with an allergist (I made an appointment with one in OCTOBER), and knowledge on how to do the elimination diet. Yay (not).

It makes me want to cry thinking that Caleb may never be able to have ice cream. But it's worth it to make sure that he can live a pain-free life. People these days find too much joy and fulfillment in food. Caleb will just have to find it elsewhere. And that's the diamond in the rough. We just have a lot of years filled with a lot of rough.

It's hard to say that All Bad Things Must End when your child is diagnosed with a chronic condition. The condition won't end in this life, but the pain will. I look forward to that.