Paroneal Tendon Repair

Well, after a year and a half of living with a swollen, painful right ankle, my podiatrist finally figured out what was going on!  My paroneal tendon (the one that goes behind your ankle) was slipping out of place, causing it to tear lengthwise.  There was no injury that caused this to occur; it just started happening one day!  After a few months in a boot, the swelling decreased drastically, which allowed the tendon to slip out of place even easier!  So surgery was the only answer.

When the doctor got in there and took a look at my tendon, he was surprised just how long the tear was.  It was a beast!  He was surprised that I wasn't in more pain than I was.  He said it was like a hose sliced down the side and laid open like a hot dog bun.  So he stitched that up.  He also made the groove in my bone deeper where the tendon sits.  While he was at it, he noticed two separate spots where I had an extra (and unnecessary) muscle attached to my tendon, called a "muscle belly," and they were helping to pull my tendon out of place.  So he detached and cauterized those.  All in all the incision was about 5 inches long!  He said it was a mess in there, but he's happy with how it all turned out.  I hate hearing that things were worse than expected, but it is nice to have a confirmation that surgery really was the best choice.

The day of surgery 

One week post-op.  He was quite alarmed at the degree of swelling I had!

Normal, skinny toes vs. sausage toes.

Two weeks post-op.  Swelling was improved, but a bit of the incision looked like it might have opened up...most likely as a result of me trying to carry the baby while hopping on one foot.  I lost my balance and had to use my bad foot to catch myself.  That was my first time attempting to handle the baby's nap on my own, and I have since realized that I can't do it without help!  Thankfully I've had a lot of people offer to help, and I've humbled myself enough to accept their offers!

I'm now almost three weeks post-op and I had my stitches removed today.  In two weeks I'll go in for an ultrasound to see how well things are healing.  If everything looks good, I'll be able to start putting weight on my foot, walking with a boot!  Wouldn't that be exciting!

The pain was well-controlled for the first week, but after that it seemed like meds weren't making a difference.  There are times when the pain is pretty bad, but for the most part I can ignore it.  I've been told to expect that it will take a full six months before I feel completely healed, but it'll be worth it to not be in pain forevermore!  There's a super good chance that my ankles are symmetrical, so I just have to hope that the same thing doesn't ever happen to my left ankle!

Feeding Tube Awareness Week 2016

Happy Feeding Tube Awareness Week!

Let's jump right to the point of my blog post this year.

"A child won't starve himself."

LIES

You hear it everywhere.  In moms groups.  In parenting magazines.  In viral internet articles.  From your own mother.  And, as I can attest, from your own pediatrician.

I'm telling you, they're wrong!

What they SHOULD be saying is "A healthy child won't starve himself."  Unhealthy children do it more often than you would think, and in those cases, thank heaven for feeding tubes!

I'm not here to tell you what to do about your 75th percentile child who seems to live off of milk and quesadillas.  Sure, I have a lot of tips for picky eaters, but let's save that for another day.  The majority of those picky eaters will be fine.

Today let's talk about the many reasons why a child will legitimately starve, to the point of weight loss, or at least no (or very, very, dangerously slow) weight gain.

• First, the one that encompasses many, many reasons:  it's less painful to starve than it is to eat.  Let that sink in a little.  My baby would have rather died a slow and painful death than eat.  Eating just hurt too much.  There are many reasons why eating can hurt, and for Caleb and Russell it was because they were reacting to foods that caused tummy aches, nausea, bloating, etc.
• Then there's the cognitive cause.  Some babies are born unable to swallow, chew, etc. due to anomalies in the brain, such as cerebral palsy.  Some brains literally don't tell the body that it needs food.  
• Then there's the anatomical cause.  There may be strictures in the esophagus, making it hard to get food down.  A tongue-tie, making it hard to swallow.  An uncoordinated swallow, causing aspiration.  A loose hiatal sphincter, causing painful acid reflux.  A congenital heart defect, causing early fatigue while eating.
• Then there's the mental side of it all.  Things like tongue ties and reflux and an uncoordinated swallow and intense sensory processing problems can cause oral aversions so severe that children will starve themselves.  Most parents know how hard it can be to get their kid to take medicine, but imagine your kid having so much anxiety over putting medicine in their mouths that they actually throw up at the thought of it.  Now imagine that happening with water, or your baby's bottle, or food that looks or feels a certain way.  It can be pretty intense.
• Then there's the hundreds of other medical reasons, many of which go undiagnosed for many kids.  I know a kid with kidney disease who requires a huge amount of fluids to keep his kidney happy, and the only way to get the fluid in him was through a feeding tube.  Some kids have such extreme hypoglycemia that they can't go all night without food, so they get a tube for that.  There are so many reasons!  The biggest factor in Caleb needing a feeding tube was his poor GI motility.  His body just doesn't digest food fast enough, so he always has food in his stomach, making him always feel full, even when he's only had one snack all day.  His body was literally starving to death, but he absolutely would not eat because he couldn't fit anything else in his tummy.  When he got a feeding tube, he would throw up half of what we fed him, because he was always full of formula.  Now that we found the medication that works for him, throwing up is a thing of the past.  But he still can't eat enough on his own to grow.  We don't know why, but we do know that his feeding tube still keeps him alive.  And there are so many kids in the same boat as him.

Well, there are just a few reasons off of the top of my head that explain why some people need feeding tubes.  I'm sure there are plenty more.  But rest assured, if a child has a feeding tube, the parents have tried everything imaginable to get them to grow (yes, even putting butter on everything, or serving ice cream at every meal).  Doctors don't go handing out tubes to every kid who doesn't eat his veggies.  So instead of questioning the parents' diligence, or knowledge, or parenting skills, think again about the many underlying reasons why a kid really will starve himself.  Then give those parents a pat on the back.  Coming to the decision to tube feed your child isn't an easy thing to do, but at times it is necessary, and then it's an answer to those parents' prayers.  

If you'd like to learn more, you can visit http://www.feedingtubeawareness.org/

To see a video of how we gravity feed Caleb through his feeding tube, go here.

For pictures of many of the feeding tubes Caleb has had, go here.

Soy Trial

After about a 6-month soy trial, Caleb starting to complain of daily stomach aches.  After troubleshooting ("are you hungry" "do you need to poop?"), he would still feel a little pain, so it was time to scope!

Since eosinophilic reactions occur in response to food proteins, and oils and sugars don't have proteins in them because they're so highly refined, Caleb has always been able to have soy oil and soy lecithin.  (Some very sensitive people can't have them, but we discovered that Caleb can.)  So the only things that he eats that have soy proteins in them are a few brands of granola bars (his favorite snack), soy sauce used in Asian food (which we use a lot), and a few odd things here and there.

The biopsy results are in and Caleb IS NOT reacting to soy!  So that's GREAT!  But the pathology report also showed some odd things ("fragments of antral and fundic mucosa with focal foveolar hyperplasia and elongated pits" in his stomach, and " mild basal cell hyperplasia, mild papillary elongation, and mild spongiosis" in his esophagus...don't ask me what any of those words mean!).  So even though the biopsies didn't show yeast, we're going to treat him for a yeast overgrowth, just for good measure, since he's been on daily antibiotics for 3 years.

If that doesn't take care of things, we may have to consider whether or not Caleb has a good, old-fashioned intolerance to soy, and think about removing it from his diet.  I'm hoping it doesn't come to that, but his comfort is a high priority!

It's a little crazy to think that Caleb's diet now is how it likely will be for the rest of his life!  That is:
*eosinophilic reactions to dairy
*eosinophilic reactions to eggs, but without symptoms...he has now passed two scopes while eating limited amounts of eggs
*behavioral reactions to wheat...we had to stop the trial before being able to scope, because his behavior was effected so negatively.  Maybe some day, when he's more mature, he can trial wheat again.

It's amazing how far he's come from the days when we could count his total safe foods on two hands!

There's a new restaurant in town called Chi-Ku and everything on the menu is Caleb-safe!  It's kind of emotional seeing Caleb choose whatever he wants, and then actually eat it.  It never gets old watching him stuff his face!

Me

We all know how my body hates pregnancy.  This time (and last time, too), I've been diagnosed with postpartum thyroiditis, a temporary condition in which my thyroid overproduces, causing hyperthyroidism.

I've had hypothyroidism for 10 years now, and my thyroid levels have been stable that entire time with me taking 88mcg of levothyroxine.  Without that tiny green pill every morning, I'm very, very sick.  Thyroid function sometimes changes during pregnancy, so I've always had my thyroid checked during each trimester and 6 weeks after delivery.  My numbers have always been fine except for after delivering Russell and Zachery, when my thyroid goes into overdrive.  With Russ, the doctor just wanted to watch it with extra blood tests  and see what would happen.  It normalized after a few months and all was fine, although I suspect that had to do with my postpartum depression and awful milk supply.  This time around, my OB wanted me to cut my thyroid pill in half and follow up with an endocrinologist.  What did the endo find?  We are grossly under-treating my thyroid and he wants me to go back on my full dose and get my blood checked again in two months.  Also, I'm very vitamin d deficient and need to take OTC supplements religiously.

I haven't felt that tired lately.  Only as tired as I would expect to be with three small, crazy boys and too many 8AM doctor appointments.  I have felt an unhealthy amount of anxiety lately, so hopefully that will improve when my thyroid normalizes.  And maybe I'll find out how it feels to be able to hop out of bed easily in the morning, and keep up with my kids all day!  One can hope....

Also, the endo ran some tests to see where I'm at with my PCOS.  I'm glad to report that I'm NOT pre-diabetic (which is a common concern with PCOS).  Not even close.  Whew!  And my liver and kidneys are happy, which is good.

Scope #8

Caleb had his 8th scope this week.  He was eating a diet of everything but dairy, wheat, and soy, but his egg consumption was limited (and mostly in the form of baked eggs).  He was also getting a tiny piece of sacrament bread for the past few weeks at Church.  Technically this trial was for peanuts, tree nuts, fish, and shellfish.  We didn't eat a lot of fish/shellfish during the trial, but he did have a piece of Udi's toast with chocolate peanut butter for breakfast most mornings.

And he...

PASSED!

WOOHOO!

The only "diagnosis" on the pathology report was "FOCAL MILD MUCOSAL EPITHELIAL REACTIVE CHANGE" in his small bowel.  I'm not sure what that means, but there were no eosinophils, so that's great!

Since biopsies have shown that he reacts to dairy, and we had to stop his wheat trial before we could scope because he was symptomatic, that leaves SOY to trial.  He was put on soy formula when he was young, and we stopped after less than a week because he seemed to be reacting to it, so I'm not particularly optimistic that he'll pass his soy trial, but it's worth a shot!  Bring on the soy sauce, edamame, and tofu!

Introducing: Zachary! (And a birth story)

Zachary LaVell Purser

7 lbs 5 oz

19 in

37 weeks 5 days

The Birth Story:

For the past month or so, my blood pressure and the protein levels in my urine have been creeping up.  Not bad enough to do anything about, but bad enough to pay a little extra attention to.  At my 36-week appointment my blood pressure spiked higher than ever (just a few points away from declaring preeclampsia) so my doctor told me to go to Labor and Delivery on that next Saturday for a non-stress test (where they monitor Baby's heartbeat and my contractions) and a blood pressure check.  Nate and I had discussed how perfect it would be to have a baby on the Saturday afternoon of a 3-day weekend.  But we both got the feeling that this day was not the day, so I didn't even pack my bags.  I headed off to L&D while Nate stayed home with the kids to mow the lawn.

A neighbor of mine was the charge nurse at L&D when I got there.  She got me hooked up and my blood pressure was reaching new levels.  The first few checks were alarmingly high.  After about half an hour my blood pressure was consistently low, though, which was reassuring.  The not-so-reassuring part of it all was the baby's heart rate.  It was in the safe range, but there wasn't enough variation.  He had been extremely active the night before, but since waking up that Saturday morning he had only moved a few times.  The whole time I was hooked up to the monitor he only stretched out twice, and didn't move at all other than that.  They were looking for his heart rate to increase every now and then, but it didn't move around at all.  After getting a good picture of how the baby was doing in there according to his heart rate, my neighbor/nurse sent the info to the doctor on call.  She came back shortly and said, "How would you like to have a baby today?"  I kinda freaked out inside!  I was excited, but not mentally ready!  She said that he didn't look too bad in there, but not too good, either, and since I was past 37 weeks they'd feel more comfortable getting him out rather than leaving him in.  I had been having the exact same feeling for the few weeks previous, so even though I know that the closer to the due date the better, there are instances where 37 weeks is better than 39 weeks, so we had to go with it!

So they sent me down the hall to a delivery room.  It was about 11AM by this time, and they wanted to monitor me for another half hour before starting pitocin, just to make sure that the baby looked like he could handle pitocin.  If not, they would have done an c-section.  But he looked fine for that next half hour (and for the rest of the induction, too), so they started a very slow, low dose of pitocin to get things started.  At this point I was dilated to 3cm, which is where I'd been for the two weeks previous.  

Nate had to bring the big brothers to their swimming lessons at 12:20, so he didn't get to the hospital until just past 2PM, after gathering my things and getting things situated with the boys.  His sister came to watch them and stay the night.  On his way out, he found the new camera that we had ordered on the front porch that wasn't supposed to arrive for another week.  It was a sign.  ;)  Today was the day, and we needed the new camera to document it!

Shortly after Nate showed up, around 2:30, the doctor broke my water and increased the pitocin.  I was still just dilated to 3cm.  I could feel the contractions, but they weren't painful at all.  Far less painful than the ones I had been having on my own for the past few weeks!  The nurses estimated that he would be born around 8PM.

Right around 5, the contractions started feeling rather painful.  I knew that I didn't want an epidural unless things dragged on, but when the pain gets real you start thinking about it.  ;)

I had always heard that when you deliver without an epidural, you feel "pressure" when you're getting close to pushing.  By "pressure," they really mean you feel like you need to have a bowel movement.  I didn't feel that at any point, but I was starting to feel like I was constipated.  The nurse said that was a good sign so she checked me again.  I was 5.5cm and 90% effaced, and she said it felt like I had a forebag of water that would need to be broken, so she'd have to call the doctor in.  I could feel it break while she was checking me, and that's when things got real.

It's a bit of a blur, but I was having less than a minute break between contractions, so they turned off the pitocin.  I was getting a little frantic with the extreme pain and couldn't stop thinking about the epidural.  They could tell I was close, even though I was only dilated to 5.5cm, so they started getting the room ready, and fast.  I started feeling nauseated.  Not 10 minutes later they checked me again and I was 8cm.  I didn't know what to do with myself, and was going out of my mind, so I started pushing.  The doctor was there and checked me again and I was fully dilated.

My first push was not a good one.  I think I was scared of what would happen if I really pushed.  Then I got scared of what would happen if I didn't push!  They kept telling me to grab behind my knees, but there was no way I was letting go of those bed rails!  I found myself screaming involuntarily.  I gave two good pushes and his head was out.  One more really good push and he was born at 5:49PM!  Just before the nurses' shift change.  ;)

They put him on my belly to rub him and suction his mouth and nose.  They didn't do that with Russell, and I was surprised how wonderful it was!  They left him there for a few moments, until the cord stopped pulsing before cutting it.  Then they quickly took him over for a weight and a diaper before putting him on my bare chest.  We cuddled like that for the next few hours!  It was amazing!  He was still all covered in vernix and blood and nobody cared!  In that time the doctor delivered the placenta and gave me one tiny stitch from a super tiny tear.

He is almost exactly three times Caleb's birth weight and exactly one pound less than Russell's birth weight!

And that's Zachary's birth story!  About 6 hours of labor total, but only about 45 minutes of pain, when I went from 3cm to delivering a baby!  It was all so bizarre, and not what I was expecting, but looking back I can say that it was exactly how I wanted it!  I can't say I'll ever be brave enough to deliver unmedicated again, but it was a really good experience with the happiest of endings!

32 weeks 3 days

I'm well into the 30s now and it's pretty exciting!  My doctor started seeing me every two weeks basically since my surgery and every time we meet he is so excited to see that I'm still holding strong!  Just a few more weeks and we'll be even more relieved!

32 weeks 3 days!

I had my checkup today and everything looked great with one exception.  The protein levels in my urine have been creeping up since about 26 weeks and today they were high enough to warrant a 24-hour urine collection.  This means preeclampsia could be our next problem.  (I called it...I really did.  I knew this was going to happen over a month ago.)  But honestly, it may not be anything to worry about quite yet because my blood pressure is fine.  I normally have super low blood pressure, so I suppose that could make it harder to catch because what's normal for everyone else would be high for me.  But with no swelling or debilitating headaches (although I have started getting a few super mild headaches in the last few weeks), I'm feeling optimistic.  Mostly I'm just relieved to be past 32 weeks, because I could handle having my baby at any point now.  Of course, I'm still holding out for a 9-pounder, so I'm really hoping this doesn't put a kink in my plans!  We'll just have to see what the labs say.  Keep your fingers crossed for me, would ya?

More generic pregnancy updates:

I seem to be recovering well from my gallbladder removal.  I was told that the internal stitches will take two months to dissolve, so that should happen in the next few weeks.  As for now, they appear to be trying to make their way out through my skin instead of just dissolving like good little stitches are supposed to do.  My incisions are getting more red, tender, and swollen, although they don't appear to be infected at all.  My OB told me not to be surprised if my skin opens up and a few stitches come out.  Sounds fine by me.  I'll just be glad to have that part over with.

We decided to be proactive about my heartburn.  Since I was feeling the pain and then treating it with zantac and tums every single day, my OB was on board with me taking generic prevacid to stop the pain before it starts.  It's made a world of difference, I tell you.  It even seems to help with the debilitating pain I sometimes feel where my gallbladder used to reside.  I don't know what's up with that, but I'm hoping it goes away after the baby comes and my organs aren't all squished up under my ribs.

I think I've developed a bit of sleep apnea.  Sometimes I wake in the night, gasping for air.  It's a strange sensation, for sure.  My doctor's not too concerned about it, especially since we're getting so close to the finish line.  I can live with it for another eight weeks.

My weight has been weird.  I gained at least 8 pounds of IV fluids during my hospital stay, and then I lost 16 pounds, putting me 8 pounds below where I was when I was admitted to the hospital.  It has taken the last 6 weeks to gain that 8 pounds back.  So as of yesterday I have gained 16 pounds total during this pregnancy.  It's definitely less than my first two pregnancies (where I gained 15 pounds by 27 weeks with each), but if I gain the expected one pound per week from here on out, that'll put me right at 24 pounds when I deliver, which is just right.  My weight was completely stagnant for a while after my surgery, so I was worried about how the baby was going to grow, but we're all caught up now.  :)

The baby is measuring just right, around 32-33 weeks.

I have another ultrasound to look at the heart at 34 weeks to check on the echogenic foci (is that the plural of focus? because there are three...).  After that, I'll see my doc every week.

I wake up once every single night to use the bathroom, usually around 3-4AM.

My aching right hip keeps me tossing and turning all night.

I've been pulling abdominal muscles, which doesn't feel that great.  It literally leaves me unable to do anything but sit on the couch for a few days, but then it seems to go away.

I'm still feeling pretty good otherwise, which is awesome.  You might be able to count my hankerin' for fresh fruit as a craving.  Jimmy John's sandwiches are also on my "gosh that sounds so good" list.  I had a dream about Jimmy John's and fruit the other night.  It was amazing.  I'm loving apple slices and peanut butter.  Hot chocolate chip cookies.  Yum.  Goldfish crackers.  Ikea meatballs.  That's about it.  ;)

Here are all my recent belly shots!:

28w1d

29 weeks

30 weeks

Today, at 32w3d.

My insanely adorable baby boy with chubby cheeks and squishy lips and a button nose at 29 weeks.

No Doubt, It's Necessary

At times I've questioned whether we did all we could do before resorting to the feeding tube for Caleb...would we make the same choice if we knew then what we know now?  Then I see Caleb come down with a simple little stomach virus (or a cold, or any other virus) and his GI system completely shuts down to where he can hardly digest anything without throwing up.  He NEEDS that feeding pump to deliver a continuous slow drip of formula (or pedialyte) to keep him from needing an IV for hydration and blood sugar.  I can't count how many hospitalizations we've avoided because of his tube!  And that's to say nothing about being able to give him the calories he needs (and can't get on his own) to grow and thrive on a daily basis.  It's true, I'm pretty glad to have that little life-saving piece of silicone in his abdomen!

Gall Bladder Woes

Once again, I woke up at 3:30AM.  Instead of bleeding, this time I was in intense pain.  For the first few seconds, if felt like an awful back ache.  It didn't take long to escalate and become unbearable.  It felt like labor cramps, but it engulfed my rib cage.  I woke Nate and told him I was in pain, then went downstairs to try to walk it off.  I thought maybe the baby had cozied up in my rib cage, and I tried to push him out.  I thought maybe I had a spinal infection caused by my weekly progesterone shots.  I thought maybe it was appendicitis, but I couldn't tell where my appendix might be since my anatomy is all squished together because of my growing belly.  The thought that I could be in labor at 26 weeks 2 days put me over the edge.  That is just way too early to be having a baby!  And besides, my belly didn't feel tight.  I tried rocking on my hands and knees.  I tried massaging my back against the door jam.  I tried breathing through the pain.  After about an hour, I sent Nate a text saying that I needed him to come downstairs to give me a blessing.  I don't remember what was said, but I do remember thinking that this wasn't going to go away on its own.

So we left our sleeping boys in their beds, called a neighbor to come sleep on our couch, and left for the emergency room.

I was in so much pain!!!!  They had to put me in a wheelchair (they wanted to send me straight to labor and delivery, which freaked me out) and Nate had to answer all of the questions because I couldn't talk or think through the pain.  There was no question my pain level was at a 10!  I never thought I'd be able to say that, because I am no wimp, but this was a 10, no doubt!

They ended up taking a urine sample, getting some blood, doing a non-stress test (monitoring the baby's heartbeat and my contractions), and starting an IV with morphine.  After the morphine kicked in, I felt like I could function like a semi-sane human again.  There was still no way I was going to go anywhere without a wheelchair, and by the time the morphine started to wear off I started writhing around on the bed again, but I had a few hours where I could think through the pain, which was nice.

Anyway, long story short, they were going to assume that it was kidney stones and we'd just have to control the pain while waiting for them to pass.  My blood, urine, and kidney ultrasounds showed nothing to lead them to believe that it was kidney stones, but it was their best guess since they couldn't do an MRI on a pregnant patient.  They were discussing admitting me for pain management (ie, giving me a morphine pump), because a few hours of morphine and some oral pain meds were clearly not going to do the trick.  When those meds were wearing off and the pain was coming back, it was easier to tell that the pain was originating from just under my rib cage on my right side.  The wonderful L&D nurse (seriously, I hope she delivers this baby in 3 months) had a "light bulb" moment and said, "Let's do an ultrasound of your gall bladder!"

So they did it, and it took a while to get the results back, so they admitted me on the Mother/Baby floor, set me up with a morphine pump (literal life-saver, there) and let me order lunch.  I took a few bites of food and couldn't keep it down.  I didn't exactly feel sick, but my stomach was just rejecting anything, even juice and crackers.

Eventually, in comes the surgeon, Dr. Patterson, to explain to me that I do, indeed have gall stones.  Two large ones and many small ones.  The small ones could travel through the duct and into my liver or pancreas and cause all sorts of serious problems there, and one of the large ones is currently blocking the gall bladder duct, causing the spasms and pain.  He said that the best course of action for me would be surgery to remove my gall bladder, and if I hadn't had lunch (even though I threw it up...) he could have done it then and there.  He also said that it's common for pregnant women to develop gall stones, and that they only feel safe removing gall bladders during the second trimester, before the growing uterus makes it too difficult to do it laproscopically.  Since I'm less than 2 weeks away from my third trimester, time was of the essence.

So I immediately start "fasting" and we plan to do the surgery in about four hours.  It's usually an outpatient surgery, but since I'm pregnant they wanted to keep me at least overnight so they could do a continual non-stress test to make sure the baby was alright and that the surgery wouldn't cause me to go into labor.  Then, on second thought, the nurse comes back in and says that they want to transfer me to Utah Valley Regional Medical Center, where they have neonatologists and an awesome NICU (the very same one that Caleb stayed at for his first 100 days of life) that could take care of us in the rare chance that this surgery caused the baby to come early.  And since I was on morphine, the only way they could send me was via ambulance.

(*Side note:  When Nate told the boys that I was going to ride in an ambulance, Caleb said, "NO WAY!" like he was jealous because it was so cool.  Russ said, "Oh no!" like he was concerned because I must be really hurt.  Those boys are so different!  And so funny!*)

Anyway, I end up in L&D at UVRMC.  We waited all night to see the on-call surgeon, who wasn't exactly on-call...they tried for hours to reach him, and he just never answered his phone.  They would have gone with another surgeon, but Dr. Patterson had already talked to him and gone over my test results and medical history with him, so he "knew" me and my situation.  They eventually realized that the surgery wouldn't happen that night, and let me eat a little jello and drink some apple juice.  I promptly threw it all up.  Nice.  The surgeon, Dr. Rasmussen, ended up coming in late that night and talked to me about the risks and benefits of doing the surgery.  He basically put the choice in my hands.  I felt a little like I would be crazy to opt for the surgery, but crazy not to.  It was dangerous either way.  If we chose not to do the surgery, it could cause serious problems for my liver and pancreas, or cause me to be in extreme pain for the rest of my pregnancy, and once we got into the third trimester they wouldn't be able to do anything about it without delivering the baby first.  If we chose to go with the surgery, it needed to be done ASAP to minimize the chance that they'd have to do a big incision (instead of laproscopic) which would require a longer hospitalization and a much harder recovery.  It could also cause me to go into labor and deliver a baby at 26 weeks, which is kind of a big deal!  That's even earlier than Caleb, who was born at 27 weeks 1 day!  We were to let him know in the morning.  So Nate and I talked and prayed about it, and I just felt strongly that I trusted the first doctor's opinion more, and he suggested the surgery right then and there.  I felt that the off chance of going into labor, or needing an open incision and longer recovery time, were worth the risk.  After all, if I went into labor, they could probably stop it, or at least hold it off for a few weeks.  Not to mention, I couldn't spend the rest of my pregnancy dependent on morphine, and there was no way I could handle the pain without it.  And then there's the fact that I was completely unable to eat or drink....So surgery was our decision.

Yes, this is my post-surgical belly.  All incisions were glued shut.  The lower one is the biggest one, and it's about a finger-length above my belly button, and maybe 1.5 inches long.  Baby Boy likes to kick it.  I don't like that so much.  It was pretty badly bruised coming out of surgery.   The two on the side are super easy to ignore, and the one on the top gets easily irritated just because of its location, but it's not so bad otherwise.

So they did surgery the next morning!  It went well.  Four laproscopic incisions.  The doctor said my gall bladder was starting to look inflamed.  Baby was going nuts afterwards, tons of movement with a good, strong heartbeat.  It was all very comforting.  Before going into the OR I was feeling like another "gall bladder attack" was coming on, which just confirmed that this surgery was the right choice.  And when I came out of the OR, that pain was completely gone.  It was replaced by a new pain, the kind you feel after you've been cut open and an internal organ was removed, but that kind of pain is more tolerable because you know that it will improve with time.

Yes, this is my gall bladder and those are the stones.  I have no idea if they're as bad as normal, or worse, but you can see two bigger ones and many smaller ones.

They let me order a late lunch, and I didn't throw up!  And I haven't thrown up since (although I've been eating really small portions)!

They monitored my little guy all through that night and until they discharged me around noon the next day.  He has a really steady heartbeat.  I felt like I got to know him better through this.  After all, he went through everything right there with me!  He's been through a lot for an unborn baby!  The heart monitor picked up and magnified his hiccups, and he hiccuped a lot!  He also would kick all day long against the monitor, which makes a really loud sound.  This kid is gonna have personality, I tell ya.  But after all of this, I feel more bonded to him.

Have you ever wondered what the outside of a uterus looks like from inside the abdominal cavity?  Wonder no more!  That's where my little guy is housed.  I'd guess he's just over two pounds right now, and safe and sound inside of his little womb.  Awww!

I was discharged after 2 nights and 2.5 days total.  Recovering at home has been hard...my lungs hurt, which is a normal part of recovering from an abdominal surgery.  I need to cough and breathe deeply, but it just hurts so much!  I've got a slight fever, and that first night at home my oxygen levels had me worried.  But today I woke up feeling half-way like a functioning human, and tomorrow will be just a little better, so I think I'll be ok.  :)  We'll see how living a gall bladder-less life effects me...good thing I never really jumped on that bacon bandwagon!  It's safe to say I'll be sad if I can never comfortably eat a donut again.  So far I haven't had any morning sickness or heartburn.  I can't say it has anything to do with the surgery, but hey, I'll take it!  There's a good chance that I can go on living without ever thinking of my lack of a gall bladder ever again, and that's the goal.

Feeding Tube Awareness Week

Parents of tube-fed kids usually have a love/hate relationship with their child's tube.  More love than hate from me, though.  We all wish our kids didn't need it (uh...how nice would it be to have a kid who can stay healthy without daily medical intervention???) but we're so glad the tube is an option!  It keeps them alive!

So for Feeding Tube Awareness Week this year, I'd like to share some of the things we love about that little piece of silicone that happens to save our kids on a daily basis!

*****

I can give him medicine without hearing him whine.  I can also give him medicine while he's asleep!  You know how when your kid has a high fever and you have to alternate tylenol and motrin every four hours?  Never mind what time he goes to bed, I can continue to give him medicine to keep his fever down without interrupting his slumber!

*****

I can keep him hydrated while sick.  You know when your kid can't keep anything down, and it's all you can do to make sure they eat popsicles, or a tiny bit of electrolyte drink every hour?  Well, I can just put Caleb on his feeding pump and set it to deliver gatorade or pedialyte at 20ml/hour, or whatever speed he's able to handle without throwing it up.  It's pretty darn handy.  In fact, at this very moment he's set to get 300ml at a rate of 80ml/hour because he has a cold and whenever he coughs with too much food in his tummy, he throws up.  He used to need IV fluids whenever he got sick, but in the almost 4 years that he's had his tube he has only needed an IV for sickness once!  And that was because his blood sugar was doing some wonky things after a day of puking, even though he was able to keep down 20ml/hour of gatorade for an entire night before going to the ER.

*****

I love that we can make sure he gets exactly the nutrients that he needs.  I've heard so many people lament that their kid will only eat hot dogs, pb&j, or quesadillas.  No veggies?  No problem.  I can rest easy knowing that he "eats" more healthy than pretty much any other kid his age.  Even though he is a veggie fan.  ;)

*****

Got a gassy baby?  No problem.  Just hook him up and burp him!  It's called "venting" and it's an easy way to get the air out of the tummy.

*****

You know how feeding a kid is a big production with all the mess involved?  You've got to do all sorts of dishes, wipe down the table, sweep the floor, wipe the kid's face, and sometimes even change the kid's clothes?  Not with a tube!  Unless the syringe disconnects unexpectedly and you spill formula all over (it happens), or the tubing disconnects while they're sleeping and instead of feeding the kid you feed the bed (it happens, and it's why Caleb's bed will always have a mattress protector)...but other than those instances, it's pretty mess-free!  All you have to clean afterwards is a tube and a syringe.  Not bad at all!

*****

When your kid is about to toss their cookies and they just look so uncomfortable...if you can work fast, instead of sending him to the bathroom to hurl, just hook up the tube and syringe and vent him.  You'll get his stomach contents out through his tube instead of letting them come up and out of his mouth.  It's so much more comfortable.  Just imagine needing to throw up, and not having to feel the discomfort of actually throwing up.  Amazing.

*****

Road trips are so much easier when you can tube feed your kid.  Imagine there's a long stretch where there aren't any fast food places (not that there are any fast food places where we can feed Caleb, anyway because of his food restrictions.  Only Chick-fil-a, which needs to expand across the country!).  Just hook him up on schedule and feed him.  Easy peasy.

*****

Well, right there is a pretty good list of reasons why it's awesome to have a kid with a feeding tube.  There are a million reasons why kids need feeding tubes--some aspirate food and drink into their lungs, causing recurrent pneumonia; some have severe oral aversions; some have low muscle tone; some have problems digesting; some have anatomical problems, like esophageal stricture or short gut syndrome; some are too weak to eat enough (like babies with congenital heart disease, or other organ failure); some need to go on a special formula and refuse to drink it by mouth because it's pretty yucky tasting (like Caleb); etc--and there's not a single parent alive who doesn't wish their kid didn't need a tube.  It's commonly believed that a kid won't starve himself.  To that I say, a healthy kid won't starve himself.  And we all want healthy kids.  For us, using a tube to feed Caleb is the best way to keep him healthy, despite his disease and special diet.  So instead of hating our circumstance, I choose to see the silver linings.  It's pretty awesome that we can use a tube to keep Caleb alive and thriving.  And it's pretty awesome that we can use it to help him burp, too.  ;)

Happy Feeding Tube Awareness Week!

This is Caleb with an OG (orogastric) feeding tube at a few days old.

This is Caleb with an NG (nasogastric) feeding tube at almost five months old.

This is Caleb during his year of being tube-free.  He was about 15 months at the time.

This is Caleb with an NG tube for the second separate time in his life, around 18 months old.

Caleb with his g-tube (gastrostomy) at about 22 months old.

Caleb today, at 5 years 3 months, getting fed lunch with his g-tube.

20 Weeks!

I'm so glad to be halfway!  This has not been an easy pregnancy.  From 6-14 weeks, I had pretty bad morning sickness and lost about 5 pounds from throwing up and being unable to eat much of anything.  Then at 13.5 weeks I woke in the night with bleeding, and was diagnosed with placental abruption.  I proceeded to bleed until I was about 18 weeks.  Now I haven't bled for over two weeks and it's been such a relief!

My routine 20-week anatomy ultrasound went well.  The baby is super active and measuring just right (two days big, actually).  My placenta is low-laying, but there is no placenta previa visible, which is good news.  There were two slight abnormalities, though.

First, the ultrasound showed what the doctor described as a "shadow" on the baby's heart.  It's called an echogenic focus, and it's basically nothing.  My doctor said it's the most common abnormality he sees on ultrasounds.  From my research, it sounds like it's a slight calcification in the baby's heart, between the ventricles or by the valve.  It sounds like it doesn't affect the function of the heart at all, which is good news.  They'll do a follow-up ultrasound later on (the doctor said 32-34 weeks) and if it hasn't resolved then we'll just have to notify the pediatrician when he's born and they may or may not want to do an EKG later on.  Thanks to Dr. Google, I found out that an echogenic focus is a marker for chromosomal anomalies, such as Down Syndrome.  There are many markers for DS that can be seen on an ultrasound, so having one marker shouldn't be significant, especially since I'm not of "advanced maternal age."  But having a perfectly clear ultrasound in no way guarantees that your baby will have healthy chromosomes anyhow.  So it's probably nothing, but now chromosome problems are on my mind and I probably won't rest entirely easy until the baby is born.

The other problem seen on the ultrasound is my amniotic fluid.  The fluid levels are fine, but it's very...dirty.  It looks like bleeding for five weeks straight leaves lots of "particles" floating around in the fluid.  If you've ever seen an ultrasound, you know that the black spaces around the baby are anmiotic fluid.  My black spaces looked like they were filled with layers of glitter floating around.  You could literally see them bouncing off of the walls.  It was honestly a little alarming to me.  The ultrasound tech said that we'd need an ultrasound in a month to follow up, but the doctor wants me to have another ultrasound to measure my cervical length at 26 weeks (you know, to make sure I'm not at risk of dilating early again) so they'll just check the amniotic fluid at that time.  The tech did say that she has no reason to believe that the dirty appearance is due to infection, so she would guess it's because of the bleeding...and while I agree with her, just hearing the word "infection" freaks me out.  We have reason to believe that Caleb was born 13 weeks early because my placenta was infected with strep and staph.  It would have killed him had he not been born when he was.  So naturally it scares me to think that there's even a slight possibility of an infection.  When Caleb started getting sick from the infection he stopped kicking (which was my only indication that anything was wrong, even though I was dilated to 4cm by that time and hadn't had a single contraction), so you can bet that I'm going to be hyper aware of this baby's level of activity.  So far he moves around more often than not--he's so active!  So that's very comforting.  If that doesn't keep up, I'm going to be calling my OB right away!

Those were the only concerns arising from the ultrasound.

Otherwise, I've been feeling much better.  I still throw up from time to time, first thing in the morning (it's always taking a sip of water with my medicine that puts me over the edge and sends me to bend over the porcelain throne, even when I eat a few bites of bland cereal before getting up).  The difference between the nausea and vomiting between the first trimester and now is that now the urge to throw up comes on super suddenly, and once I throw up I feel better immediately.  In the first trimester, I would feel on the verge of vomiting for 12 hours before throwing up, and throwing up never provided relief.  It was pretty bad.  Now I honestly can't complain.  It's not so bad at all.  I still take zofran maybe four times a week to control the nausea, but even that is perfectly fine with me.

My cramps have also decreased drastically.  They were awful the week of Christmas, when I was out and about more than usual at family gatherings.  Time spent in the car brought on cramps so awful that I ended up downloading a contraction timing app.  There were a few scary moments there!  But once Christmas was over the cramps went away almost entirely.  I credit the weekly progesterone shots, honestly.  They're designed to prevent preterm labor, and I think that's just what they're doing!  I started them the week before Christmas, so it seems that it took about a week and a half to get in my system and now they're doing their job!  Yay!  I'm still having plenty of braxton hicks contractions, but those don't worry me like the cramps did.

I feel much more stable now that I'm not bleeding or cramping.  I've even allowed myself to be more active (I actually walked through a few stores in the past week) and I haven't had any problems!  I can tell spending over 5 weeks laying low has weakened my muscles a lot, so it'll take a while to build up my stamina, but I'm glad that I'll be able to be mostly back to normal before long, with the main exception of heavy lifting.

I've also seen a decrease in heartburn recently (weird) and instead of my hair getting thicker, it's falling out more and more (I don't mind, because I have way too much hair as it is, but it's not "normal" for pregnancy, and I'm a little concerned about my thyroid levels, which have yet to be checked this trimester).  I don't have any overpowering food cravings, but I have aversions to ham and mints.  Yuck...just the though of mints...just no.  Since I'm able to eat pretty much anything these days, I've finally put on about 5 pounds in addition to gaining back the weight that I had lost.  And the best part of this pregnancy?  My mood is perfectly normal.  With my first two, I had awful and unpredictable mood swings.  I got mad at the littlest things.  I hated the sound of crying babies and whining children...I seriously hated kids during my first two pregnancies.  Now I feel like I actually have control of my moods, which is the most incredible thing!  I'm a functioning person (unlike before), and it feels great.  :)

17 weeks

18 weeks 2 days

1 day shy of 19 weeks

My little boy at 20 weeks 1 day.  Is that a smile I see?  <3 p="">

Pregnancy Update: 15 weeks 3 days

I had an ultrasound today and it appears I have three separate (yet likely related) things going on.

1) I have a placental abruption, where my placenta is separated partially from the uterine wall, which has been actively bleeding for two weeks now;
2) a subchorionic hemorrhage, where there is a hemorrhage (or possibly a blood clot) between the wall of my uterus and the amniotic sack (I could literally see a sizable bubble in there); and
3) partial placenta previa, where my placenta is partially covering the cervical opening.

This could get complicated, but since my bleeding appears to be stable (even though it hasn't stopped), hopefully it'll just clear up eventually and not be an issue.  If the bleeding gets worse by the time the baby is viable (24 weeks) then I'll end up on hospital bed rest.  Worst case scenario, the bleeding gets so bad that they have to deliver the baby super early to save its life.  The placenta is kinda vital to the baby's survival.  ;)  For now, I'm going to "take it easy" as much as possible and only do the most necessary daily tasks in hopes that the bleeding stops, or at least doesn't get worse.

Also, the placenta previa could be a big deal (it could be the reason I'm bleeding), and it could eventually cause me to need a c-section.  But since it's not a "complete" previa, there's a good chance the placenta will migrate upward as my uterus stretches and grows.  They were taking so many measurements of my placenta because it was super long.  So I guess it's just kinda getting in the way.  But once the uterus gets bigger, it'll hopefully move away from the cervical opening and it won't be an issue.

So there it is.  A lot of wait-and-seeing.  And hoping that this bleeding and these cramps go away.  I started my weekly 17p (progesterone) shots today, which are supposed to keep me from going into early labor (I took them with my last pregnancy as a precaution since Caleb was born so early), so we'll have to see if that helps with the cramps.

Alright, I'm off to "take it easy" some more.

Oh yeah, and we found out today that...

IT'S A BOY!

I seriously couldn't be more excited about the prospect of having three little boys.  It's gonna be awesome.  Every day is gonna be a party at our house.  :D

First Trimester Placental Abruption

This blog post will have lots of details that may gross you out.  It goes along with my policy of "if it's medical, it's not personal."  Be warned.

Thursday morning, December 4th, I was exactly 13 weeks 4 days.  It was around 3:30 AM when I awoke feeling like I was wetting my pants (see, personal details already).  I was a little embarrassed, thinking this is waaaay too early in my pregnancy for that to start, right?  I mean, it's not like I have 6+ pounds sitting on my bladder.  So I got out of bed and felt a gush.  I was like, seriously?  Can I not control my bladder?  So I went to use the toilet and was pretty darn alarmed at what I saw.  There was blood.  So much blood.  In my pants, turning the water red.  Blood everywhere.  It seemed kind of watery, too.  But then there was a blood clot, not huge, but certainly big enough to be alarming.  Oh crap, I think I may be having a miscarriage.

So I got cleaned up and woke Nate up.  I told him that if I start having cramps then I'm going in to the ER (after all, bleeding, blood clots, and cramps are symptoms that are pretty hard to ignore).  At that moment I felt a tiny cramp, so I was like, "I'm going."  Of course, it's 3:30 in the morning, so who would we call to watch our kids??  We decided that Nate would stay home and I'd drive myself to the hospital.

 

They were able to get me back for an ultrasound after not too long of a wait.  The ultrasound tech didn't let me see the ultrasound much at all, but after a minute of taking a look at things he said, "It's squirming around in there."  Whew!  What a relief!  He was also extremely surprised that I was only 13 weeks (and 3 days) because the baby was consistently measuring at 14 weeks.  He also informed me that I have a posterior placenta (it's implanted on the back of my uterus).  Good to know.

So after taking a look at a bunch of things, he brought me back to my ER room and they started an IV.  Or I should say, they tried to start an IV.  They were successful on their third try.  It turns out my forearms have deceptively nice-looking veins, but they blow extremely easily.  I'll be warning anyone else who ever tries to put an IV in my forearm.  

This is how it looked almost 9 days later.  I also recall how it took three tries to get an IV in my forearm when I had my tonsils out.  So after five total attempts in my lifetime, only one of those attempts was successful.  Yes, I think I'll have them stick to my elbow joints from now on.

To make a long story short, the doctor eventually came in and told me that I had a mild placental abruption.  My placenta is partially detached from the uterine wall, which shouldn't happen until after the baby is delivered.  He said it could bleed for a bit, then reattach itself and heal.  Or it could detach more and more until I miscarry.  He said to go home and stay on bed rest until I could follow up with my regular OBGYN within the next week.  He was very kind about it, but basically told me not to come back unless I was losing so much blood that I was dizzy.  There's really nothing the ER could do about a miscarriage, anyway.

So I made it home around 6:30 AM feeling very relieved that my baby was still alive and glad that there was something I could do to protect him/her.  

So I stayed on bed rest, with the bleeding getting better and worse and better and worse.  Literally every other day.  I could periodically feel my uterus contract and stay rock hard for a few minutes, but I never had any cramps.  Judging by my still-existent nausea and the fact that I could literally feel the top of my uterus growing higher and higher each day, I knew my baby was still ok in there.  All the while, Nate did a seriously amazing job taking care of the boys and me.  

I saw my regular OB on the next Tuesday.  Well, I saw the nurse anyway (the OB had just left for a delivery).  We located the heartbeat (always a relief) and she told me that there's a pretty good chance that the baby will be ok.  She gave me a 90 percent chance that the bleeding will stop on its own and the pregnancy will proceed as normal.  She wanted to wait for two weeks after the beginning of the bleeding before doing an ultrasound, to give my placenta a chance to fully heal.  She also said I didn't need to be on strict bed rest, but "modified bed rest," where I can be up and about and doing things, but don't do more than what's necessary and most importantly don't do any lifting (no more than about 6 pounds, she said).  Also pelvic rest.

Since going from strict bed rest to modified bed rest, I have been having loads of cramps.  As of today the bleeding still hasn't stopped, but it hasn't gotten worse, so I'm taking that as a good sign.  But the cramps are quite painful, and since my placenta is posterior, I get awful lower back cramps.  And then there's the overall soreness associated with placental abruption.  My abdomen is just plain sore.  Really sore.  And then there's the 10-minute-long contractions that I get when I do something as simple as bend over.  That was pretty "normal" for me when I was pregnant with Russell, so I was expecting it this time around.  But I sure hope that that doesn't harm my placenta any farther.

Also, oddly enough, the bleeding is always worst first thing in the morning.  I don't know if the baby likes to kick his/her placenta all night long or what, but after a day of milling around the house things always seem slightly better (except for those darn cramps).  

So now we wait.  There's a slight chance that the bleeding won't ever stop and then we'll just have to hope that it doesn't get any worse until I can deliver.  If that's the case, I'll be lucky if I can go full-term.  So let's just hope that it resolves!

I'll keep ya posted.

World Prematurity Day: Remember When

I love how the whole month of November seems like it's dedicated to Caleb.  :)

There are a lot of facets of prematurity awareness, but this year I'd like to focus on something positive.  The March of Dimes has a "Hugs Heal" campaign promoting skin-to-skin holding (kangaroo care) for premature babies.  It has been proven to help babies in a lot of ways.  In underdeveloped countries, where proper medical equipment is hard to come by, Kangaroo Care can literally save lives!


Kangaroo Care is "holding your diapered baby on your bare chest...with a blanket over your baby's back to keep him warm"  (Learn more about Kangaroo Care here.)

This is a picture of the first time I held Caleb.  He was 12 days old and had just come off of the ventilator for the last time the day before.  He was still well under 3 pounds at this point (he reached exactly 3 pounds when he was exactly 3 weeks old).

I was so excited when I got the call that Tuesday morning from our favorite nurse, Catherine.  I had previously been told that I couldn't hold him until he had been off of the ventilator and stable for at least 24 hours.  The day before this, he was supposed to have heart surgery.  His lungs had been filling with fluid and collapsing, but he took such a great turn that by that evening he was able to breathe on his own.  Catherine told me, "I know you thought today was going to be a 'recovering from surgery' day, but how would you like to come hold your baby?"  She was always such a great advocate for him!  She told me many times, "I'll always do what's best for your baby.  I'll fight for him and they can fire me if they want!  I only work this job because I love it.  It's worth it to get fired if it means I'm doing what's best for your baby."  And there were many times that I did see her fight for him!  I expect this was one of those times.  I can imagine her that morning, telling the NP and neonatologist, "Look, he's doing great.  He's never been better.  He's 12 days old and his mom has never held him.  Who cares that it hasn't been 24 whole hours since he was extubated?  It's time for Mom to hold him."  This post could quickly turn into "The Many Reasons Why I Love Catherine," but back to Kangaroo Care....

I picked Nate up from work on my way to the hospital.  He wasn't going to miss this!  It took two nurses and one Respiratory Therapist to move Caleb from his isolette to my chest.  Three people for one tiny baby!  They told me that I would probably only hold him for 30 minutes, because by then most babies need to return to the stability of their isolettes.  But Caleb snuggled in and fell asleep almost instantly (well, after trying to pick up his head and turn it around with that big CPAP elephant nose stuck to his face!--he was amazingly strong; and after rooting around to try to find a source of that yummy smell of milk that was so close--AMAZING to see for a baby who hadn't even attempted to eat yet).  His heart rate and oxygen saturation leveled out wonderfully.  Babies this small will often swing between high heart rates and low heart rates, causing the monitors to alarm every minute or so.  They call them "swingers."  But while I was holding Caleb, his swinging was much less than it was before.  He was so stable on my chest that they let him stay there for TWO HOURS!

The best word to describe how it felt to hold him is right.  It just felt so right to have him so close.  Yes, it would have been more right to have him inside of me for another few months, but this was the next best thing.  Mommys and babies aren't supposed to be separated so early and when they are, there is nothing better than being put back together again.  It was truly one of the most incredible moments of my life.

When it was time to put him back (and change his diaper, and start his next feeding, and for me to pump because I was getting pretty uncomfortable) they took his temperature (as they always did every three hours) and it was perfect.  There was no denying that holding him skin-to-skin was good for his health.

Nate's first time holding Caleb.

As the days went on, we were allowed to hold him once a day for those first few weeks.  Nate and I took turns holding him skin-to-skin.  There was one day where I was holding him and he let out a little cry--very unlike him.  Caleb almost never cried.  Then he spit up a little.  I remember thinking, "Oh, he's just like other babies now!  They all spit up, right?"  But Catherine knew something was wrong.  She told the NP that he NEVER cried when Mom is holding him, and that alone was a big red flag.  So they did an abdominal x-ray and found that he was dangerously close to perforating a bowel.  His bowels were so full of air that they were pushed up to the level of his nipples.  It was caused by a combination of starting giving him Human Milk Fortifier to increase the calories and fat content in my breast milk in an attempt to chunk him up (studies have shown that the faster a baby can gain weight, the faster they get out of the NICU) and swallowing air from his CPAP machine.  They immediately stopped feeds, put him on a tube (the Andersen Tube) that essentially pumps everything out of his stomach, measured his girth every three hours, and waited for him to get better.  This was the closest Caleb ever got to dying while in the NICU.  If he had perforated a bowel, it would have required emergency surgery and would have likely caused infection.  Infection is the number one killer of babies in the NICU.  It was a scary few days there, and we weren't allowed to hold him until he was more stable.  About a week later, the NPs wanted to put him back on the Human Milk fortifier.  Again, Catherine pulled out the, "You'll have to fire me before putting him back on that so soon after what he's just been through."  I was there to see this one.  Catherine is one of the most likable people ever, but when she pulls out the big guns you back down!  So they agreed to try a much more gentle fortifier, which we could all be happy with.  My Mommy instinct (which has proven to be extremely trustworthy) tells me that the reason Caleb has such awful GI motility and can't digest food fast enough to consume enough to survive is because of the trauma caused to his GI system from that fortifier.

As you can see, holding my premature baby was an amazing experience for us both.  One that quite literally could have saved his life.  And the emotional experience was unmatched.  It's a moment that will always bring tears to my eyes when recalled.  Hugs truly can heal.  And now I get to hug that big, miraculous 5-year-old all I want!

Caleb

Tonight I sat by the bed of my sleeping angel and put my finger in his hand, just like I did when he was a baby.  Only then, I wasn't at liberty to pick him up and hold him because he was too fragile, too unstable, or needed to preserve his energy to grow and learn how to eat.  Today I watched him go down a big slide on a potato sack all by himself.  Once he made it to the bottom, he immediately hopped up and came to me with a quivering lower lip and said, "I didn't like that at all.  I don't want to do that again."  And I held him in my arms, just as I wished I could all day long during those first three months.

As I sat by his bed, I watched him breathe.  It came so easily tonight, unlike his first few weeks.  I remember watching him struggle for breath at a few days old, just wishing the doctors would put him back on the ventilator so he could rest.  I was moved to tears, seeing my tiny baby struggle so much to do life's most basic function.  I wished life could be easy for him.

Tonight, as I sat by his side, I listened to the feeding pump churning away...just as I did almost five years ago.  He's still working on life's second most basic function (eating).  And that's ok.  Medical intervention kept him alive then, and it does so now.  I could never hate it.

As I looked at how much smaller my finger looks in his big preschooler hand, I noticed that it's slightly callused, unlike when he was born with skin as thin as paper.  I remembered my very first interaction with him--I stroked his leg, because I didn't know any other way to let him know I was there.  The nurse told me that it was overwhelming and even painful for tiny preemies to be stroked like that, and to provide firm pressure instead of movement.  Who knew I was touching my newborn baby wrong the very first moment I met him?  In the days that followed, he developed two scars from the monitor leads.  They were attached to machines and run by electricity, and even the imperceptible amount of heat they generated burned his delicate skin.  He still wears the scars today.

Tonight, I soaked him all in.  And I thanked God for the priceless memories of those first three months, and for every day since.

An update on Russell's food intolerances.

Remember how Russell would complain of tummy aches many times daily?  And how he was so very bloated?  And how his poop was...not right?  And remember how his villi in his duodenum were mildly damaged, so we thought taking him off of gluten would be the best next step?  Then when he went off of gluten, everything got worse?  He didn't want to eat and he had blood in his poop?  So with a strike of mommy inspiration we decided to take corn out of his diet and everything got better?  Remember that?

Well, after many months of having him off of gluten and corn, we decided to try giving him gluten again in hopes of getting him to gain weight a little easier.  His weight gain didn't improve, but he didn't have any tummy aches or other problems with gluten, so we called it a success!

Then, a few weeks ago, I slipped up and gave him some cereal that was made out of corn.  Oops.  But he didn't have any problems with it, so we decided to let him trial corn.  He has since had lots of corn--straight corn, corn cereals, corn chips, corn tortillas, popcorn, etc.  And he hasn't had a single bad poop!  No blood, no mucus.  He still complains that his tummy hurts a few times a week, but that's usually because he needs to take a trip to the bathroom (which we discovered before he even started trialing corn).  And his bloating never went away (not even when he had been off of gluten and corn for many months), but as long as he's not in pain then I don't think it's a big deal.

So it's safe to say that Russell has officially outgrown his corn intolerance.  I wish we had discovered it sooner (he was almost 2 before we finally figured out why he had been in pain his whole life), but let me tell you, it's great to have a kid with no food restrictions!!  It's like a whole new world.

Caleb at 4.5 (and oral eating/reduced tube feedings)

Caleb has been in the middle of a big change for the past few weeks.  He was doing so poorly with oral eating.  He would get a nasty look on his face just by looking at his food.  We knew we needed to intervene if we wanted him to keep the physical ability to eat and not become even more averse to food.  His weight was doing better than ever (in the 3rd percentile!!!!!), so we decided to decrease his tube feedings by over 60 percent.  Instead of giving him a minimum of 30oz of formula a day, we are only giving him 8oz of formula and at least 12oz of water through his tube.  We knew he would lose weight, but at this point we felt confident that we could get him to gain it back by increasing his tube feedings if his weight loss was just too great.  I even researched a few tube-weaning sites for tips and what to expect, even though I don't expect him to fully wean from his tube at this time.  

The first few days were rough.  He dropped a lot of weight pretty quickly (about a pound).  He was super cranky (hangry, anyone?).  I'm pretty sure he just didn't know what to do with that hungry feeling, and with his sensory processing disorder he just couldn't process that new feeling.  Finally on about day 3 he said, "My tummy hurts.  I think it's because I'm hungry!  I should eat some food to make my tummy feel better!"  Around that time, he also started bringing me food from the cupboards when it was snack time.  Amazing!

One day he asked for a piece of toast, so I toasted some Caleb-safe bread in the oven.  He ate about two thirds of the piece of bread!  He had NEVER eaten so much bread before!  So I rewarded him by bringing him to the store that very afternoon and buying him his very own toaster (since our other one was cross contaminated with wheat).  He asked for a piece of toast for his very next meal and HE ATE THE WHOLE THING!  We also went to Red Robin (the only allergy-friendly sit-down restaurant that we've brought our kids to) and he ate AN ENTIRE HAMBURGER PATTY!  This is seriously big news, people.  He now eats an entire piece of toast for breakfast every single day, because Grandma told him that she eats a piece of toast for breakfast every day.  We slather it with coconut oil and sprinkle on some cinnamon and sugar.  He also eats lunch, dinner, and two snacks.

He consistently lost weight until just this morning.  He weighed in at 30lbs 11oz, which is just 5oz down from where he started, and up 7oz from six days ago!  So he's making progress and it's entirely possible that he'll keep gaining with his oral eating!  

The last time we tried decreasing his tube feedings, he lost some weight then gained really well on his own for about a month before he burned out.  It's really hard work for him to eat that much, so I wouldn't be at all surprised if he needed his tube feedings increased again eventually.  Which is fine.  We're in no rush to get rid of his tube.  But it's really great to see him being excited about eating more!

Also at 4.5, Caleb:

• Loves playing outside
• Loves playing with his brother
• Knows the sounds of all of the letters and is starting to put sounds together.  Soon he'll be sight reading
• Is a good little singer
• Is finally able to write his own name and many other letters of the alphabet
• Is finally starting to draw pictures (mostly of cars)
• Is super emotional and has emotional breakdowns many times daily, usually over things like, "You can't go play outside until you pick up your toys."  He doesn't understand cause/effect and consequences very well.  I'm beginning to think it may be how his promised learning disability (as a result of his brain bleeds from prematurity) is being manifest.  It's hard to stay patient with him.  We have variations of this conversation every day:

C: Mom, Can I go play outside?
Me: You can play outside after your put your toys away.
C: (starting to freak out) But I want to play outside!!

Me: Then put your toys away.

C: But I don't want to put my toys away, I want to play outside!!! (screaming and crying and freaking out)

Me: You can play outside, you just have to put your toys away first.

And it eventually ends up with him in such a rage that I send him to his room to calm down.

Yesterday I ended up writing it down for him to see his choices on paper, even though he can't read.  He seemed to understand it a little bit better that way (at least he didn't end up in a rage over it).  I think he'll learn, it'll just take a lot of extra time and repetition, and a lot more patience on my part, before he can really understand.  That's how a lot of things have been for him (such as learning morals, and to respect the dog and cat).  Some things seem to come easy for him, like talking and remembering things, but some things are just really, really hard.  

Also, just a little update on his egg trial:  The pathologist said that the biopsies don't indicate a reaction, but after reading through the report myself it definitely qualifies as a reaction.  I think the pathologist just missed the memo on eosinophilic diseases being patchy--you can have a completely clear biopsy in one spot, and move over half an inch and find 100 eosinophils.  So for now we have removed egg from his diet and we'll be asking for a second opinion from his new GI after we move.

And now for a smattering of pictures!

(We took bites to make our popsicles match.)

 (Caleb made this "airplane" out of Lincoln Log stuff.)

(A lunch I made that looks like Perry the Platypus with curly hair.)

 (Caleb performing "surgery" on Russell.)

(Russell performing "surgery" on Caleb.  Everyone survived.)