Here we go again. :(

I've never failed at anything in my life.  Sure, I might not excel at everything I do, but I believe that with enough work I can accomplish anything that is important to me.

So why are BOTH of my children now diagnosed as "Failure to Thrive?"  My most important job in life, to take care of my sweet boys, is the one with "Failure" in the title.  Eating and breathing are two of life's most basic functions.  At least they can breathe, since apparently they really stink at eating enough to grow!

Russell had his 6-month checkup on June 22nd and he weighed 12lbs 12oz.  That's a gain of only 10oz in two months.  His weight dropped from the 6th percentile to well below the charts.  Babies at this age are still supposed to be gaining almost an ounce a day, not five ounces a month.

On top of that, he only grew a quarter of an inch in the last two months.  He went from the 48th percentile to the 6th percentile!  That's horrible!  He's currently only 25 inches.

And it gets worse.  His head circumference went from the 37th percentile to the 14th percentile.

For those who don't know, a baby's body always delivers nutrients to the brain first, length second, and weight third, because the brain is most important and adding extra padding is least important.  So when the body goes into starvation mode, weight will suffer first, then length, then head circumference.  Since Russell is suffering in all three areas, the doctor was quite concerned!

He ordered tests for cystic fibrosis, thyroid function, immunodeficiency, iron, electrolytes, allergies, and a CBC.  Everything came back normal, thankfully.

I made Russell an appointment with Caleb's pediatric GI specialist just after his 4-month appointment because he dropped from the 20th percentile to the 6th percentile and I just knew we would be dealing with problems by now.  Good thing I made it forever ago, because we still won't get in until late August!  Then we'll probably skip straight to the scope to test for an eosinophilic disorder, since Russell's diaper habits (like how I put it so nicely?) aren't quite what I would call "normal" and every time I give him a new food for the first time he gets rashes on the backs of his legs that last for a day or two and then go away until I give him another new food.

Caleb was diagnosed as FTT at 14 months.  Russell really has a leg up on him.  At 6 months adjusted age (9 months actual) Caleb weighed 12lbs 15.5oz.  That's 3.5oz more than Russ.  And Caleb was sicky from the beginning.  Russell was supposed to be healthy.  HA!  And Caleb never missed any milestones, even though he had brain bleeds.  Russell basically stopped cooing for the last month and a half and doesn't seem to recognize his name yet.  Since starting solid foods he has started cooing again, but he still doesn't babble with consonances, which he should be doing by now.

Surprisingly, the doctor didn't suggest giving Russell formula.  Because of what happened after Caleb stopped getting breastmilk (stopping eating all together) I would really, really like to keep nursing Russ.  Also because it's one of the only things that comforts him.  The pediatrician and I believe that a healthy baby will be able to increase his mom's milk supply on his own, and that only a few women really have problems producing enough.  (Although I just may be one of the few....)  So instead of just assuming that my milk is the problem, Nate and I decided to buy an infant scale to monitor how much Russell gets when he nurses from me.  After a few days of weighing him before and after most feedings, it appears that he usually gets about three ounces from me.  That's about half of what he should be getting.  So we've been supplementing with a few ounces of formula after nursing, but he went from gladly taking an ounce or two to refusing to drink any formula.  A few times we have needed to give him a bottle in place of nursing, and he won't drink more than an ounce or so, and he certainly doesn't drink it willingly.  He also gets solids twice a day and nurses immediately after.  He has been gaining an ounce or two per week since starting solids, so hopefully that will keep us out of the danger zone.

I'm fairly certain that his love of nursing is the only thing keeping him hydrated.  He used to love the bottle, but has grown to hate it.  He currently loves solid foods, but Caleb was like that to begin with, too.  I honestly feel like we're dealing with Caleb all over again, only crankier and he actually nurses.

It's been nice to have six months of ignorant bliss, thinking my baby was healthy and fine, but I suppose I always knew somewhere deep down that it just couldn't be true.  Nate is still holding out hope that it's nothing, and I'd like to say that I won't be surprised if it's nothing, but I really feel like we're dealing with an eosinophilic disorder.

He got poked three times on the day this picture was taken.

Holy cow, I love that baby!

Russell's first taste of solid foods!

Yes, we gave our little 6-month-old his first solid foods yesterday!  Rice baby cereal with formula.  Yum yum.

This is the "before" picture:

"WHY ARE YOU NOT FEEDING ME RIGHT NOW???  CAN'T YOU SEE I'M ABOUT TO DIE!!!!"

This is the "after" picture:

"Mmmm.  A full belly and feeling good!"

This is a video of the first bite:

This is a video of how the rest of it went:

He ate 2 tablespoons of dry rice cereal mixed with 2 ounces of formula!

And he loved it!  Holy cow, I have a kid who enjoys food!  It all seemed so unreal....

Until I saw this this afternoon (on both legs):

Eczema, anyone?  This is exactly what happened when we started Caleb on solid foods.  (By the way, it's much worse in real life than it is in the picture.)

If this is food allergies, that's right up my alley.

And in all of my worst nightmares.

Russell is 6 months old! What?!

My baby boy is seriously already half a year?  The next six months had better not go as fast as the last six months, or else before I know it I'll have a 1-year-old!

At six months old, Russell:

• Wears size 2 diapers
• Wears size 0-3 month clothes.  I noticed a few 3-6 month clothes were stored with the 0-3 month ones, and they fit, too, although all of his 0-3 month clothes still fit except a few of the smaller onesies and sleepers.  And some of his 0-3 month clothes are still pretty big on him!
• Can roll over easily, and while on his tummy can pivot to face any way he wants
• Got up on his hands and knees and rocked back and forth today.  Next stage: crawling!  Good thing I already went through all of Caleb's toys and packed away the choking hazards!
• Isn't much of a talker.  It's weird for me, because Caleb was a chatterbox from the very beginning.  If I try really hard, I can usually get Russell to coo and "talk" to me about twice a day, and only immediately after a feeding.  Sometimes he laughs, too, but only if I tickle him just right.
• Is only happy for about 10-15 minutes after each feeding before deciding to be a cranky pants.  He's also happy if we go somewhere (like the store) and he has new things to look at and be distracted by. He's a good little shopper!  Everywhere I go people look at him, he smiles at them, and then they say, "Oh, he's such a happy baby!"  I usually respond by saying, "yeah, right now he is," while thinking in my head, "if only you knew what it's like at home...."  But seriously, the child hardly ever gets any time on the floor to practice his motor skills because every time I put him down he cries so hard that it takes him 10 minutes after I pick him up to calm down.  It gets a little exhausting.  But if Nate is watching him while I'm out of the house, he's a perfect angel, until I get back and he sees me.  I haven't decided if he cries because he hates the sight of me or if he just loves me so much that he can't stand not to be in my arms.  Either way, I'm excited for this phase to pass.
• Can sit on his own for a few seconds, and for much longer if he has a little bit of support.  He is able to support himself with his hands, but usually he just lunges forward to lay on his belly.  He's a belly boy!
• Has THREE teeth, all on the bottom.  I'm fairly confident that the next tooth to come in will also be on the bottom.  The top teeth don't even seem to be close!  He's gonna have a bit of a goofy grin, I expect  :)
• Often has red eyes.  They look pretty dry, so I plan on asking his pediatrician about it later this week
• Got the memo on nap time and bed time!  He falls asleep on his own every single time.  Hooray!  He sleeps for 2-3 hours every afternoon, just like Caleb, and at the same time as Caleb!  It's so helpful for my sanity.  ;)  Almost every night is the same, with him going to bed around 9, waking up to eat between 5 and 6, then going right back to bed and waking up between 9 and 10 to eat again.  Before Caleb wakes up at 10, I have a little chat with Russell while he's happy, get him dressed, and put him back to bed for his morning nap, where (most days) he sleeps until about 11 or 12.  Then both boys are on the same schedule for the rest of the day.  Sometimes he doesn't want to take a morning nap, and then we adjust the day accordingly

• Loves Captain Hook, and The Captain loves him!  Yes, sometimes the cat tries to eat Russell's feet, so we have to be careful.  But Russell is much more gentle with the poor kitty than Caleb is, so Captain Hook is smart and prefers Russell's company.  One early morning, after feeding Russell and putting him back to bed, I didn't notice that Captain Hook had sneaked into Russell's room.  Three hours later I found them cuddling in the crib.  It'll be fun to see them grow up together! 

• Is in love with his feet.  Every time I put him down to sleep, I give him his feet as his comfort object.  I'm convinced that feet are better than thumbs or binkies, because a) feet are always there and he has the coordination to grab them on his own, and b) there will come a day when he can't reach his feet as easily so he'll wean himself from needing them on his own.  When that day comes, I'll give him a stuffed animal and a blanket for a comfort object
• Loves stuffed animals.  Every time I change his diaper he turns to try to reach for the things by his head (spare diapers, wipes, etc.).  I give him his stuffed panda bear and he's happy as can be!
• Went from pooping ten billion times a day to once or twice a week.  I just thought you'd like to know
• Isn't very good at swallowing.  Once a day (sometimes more) he kind of chokes on his milk, sputtering and gasping for breath with a red face and watering eyes.  He swallows a lot of air when he eats.  I'm a tiny bit terrified to give him solid foods, because of everything that we've gone through with Caleb.  Caleb used to not be able to swallow even 1ml without turning blue and his heart stopping.  Seriously.  That's when the NICU OT realized that he needed thickened milk.  Once it was discovered that he was tongue-tied and his frenulum was clipped, he didn't need thickened milk any more.  Of course, I still worry that Russell is tongue-tied and that he aspirates/penetrates (the food goes "down the wrong tube").  Well, if I have yet another kid with feeding problems, at least I have a whole ton of experience there, and we have a feeding therapist on board who we love!
• Shows interest in drinking from a cup (aka, he tries to drink his bath water as I pour it over him, and tries to grab my cup when I drink with him in my arms) but shows no interest in food.  Every day, after his dinnertime feeding, I put him in his high chair with spoons and toys while Caleb and I eat.  He loves to chew on his spoons!  This evening I'm going to attempt his first solid foods feeding so I can tell the pediatrician later this week how it went.  Wish us luck!
• Gives the best kisses EVER!  When he's really happy he loves to grab your face and pull it to his mouth and give you a big, slobbery, wet, open-mouthed smooch!  I LOVE it!  

We love this little irresistible baby!

And now for a million billion random pictures.  Enjoy!

Workin' those abs!

 What?

 Just doin' some more ab crunches.

He's always been one to like hats.  It's a good thing, too, because otherwise his bald little head would get sunburned!

Rockin' the jungle theme.

Sweet sleeping baby.

Exploring the new toy his Momma got him on clearance!  Too bad he screams bloody murder whenever I put him in it, but he will go in it and play forever if Nate puts him in it.  It's rather frustrating.

 He sure loves that tongue!

Again, when he doesn't nap well in the AM and he gets cranky before his afternoon nap, Nate can put him on his belly on the couch and pat his back and he'll fall right to sleep.  But can I?  Yeah, right.  Maybe we should switch roles and Nate can stay home while I go to work.  I think Russell would like it better that way.

"Practicing."

He was really happy today (YES!) so we had to enjoy some time on the floor and capture some of those silly expressions!

Classic Russell face.

See those toofers?  They're cute ones.

Forgive me while I vent.

I'm going to take a very short moment to feel sorry for myself.  I don't need anyone else to feel sorry for me.  I just need a moment and then I'll go back to seeing the beautiful things around me instead of the awful.

Here I go.

I hate that I cause my son pain just by feeding him.  HATE it.  

I force feed him via his feeding tube.  Of course he doesn't want to eat.  It HURTS.  And yet we put him through feeding therapy; we try all the tricks in the book to get him eating.  He doesn't hate us for it.  He tries.  But then he stops, because it HURTS.  So when he doesn't eat by mouth, I put it down his tube, and it hurts just as bad, only instead of hurting himself by eating, it's his Mommy who hurts him.

I only do it to keep him alive, I swear.  When we know that he's certain to throw it all up anyway, we just don't feed him (like at church).  He likes it better that way.

He had another scope on Tuesday and we got the biopsy results this morning.  The eosinophils are back.  The only foods that are changed from his last scope in November, where there wasn't a single eosinophil, are the formula (switched from Elecare [an amino acid-based formula] to Gerber Goodstart Gentle [a dairy-based formula]), peaches, pears, and sunflower/safflower/canola oils.  So he's reacting to at least one of those.  It's most likely the formula, since dairy is such a common allergen, so starting today we're trying a new formula.  But it could also be one of his other foods, since at the time of his scope in November he wasn't eating much other than apples, grapes and sweet potatoes, even though chicken, rice, tuna, and white potatoes were also allowed.  He just hardly ever ate any of those because he was vomiting so much that eating wasn't appealing.

So, for the past 6.5 months, Caleb has been in pain every single time I feed him.  That sure makes me feel like the mom of the year.

So much time wasted.  That's one fifth of his life.  I hate this guessing game.  I hate this disease.  I hate that my little boy has been so sick for so long and we never really knew.

Please, oh, please, just don't tell me that I have to take potato chips away from him.  It would break his sweet little heart.

There is something seriously wrong with my life.

The end.

Remember When...

Remember when Caleb was 11 days old and he was less than an hour away from getting heart surgery?

When he was one day old he was doing so well breathing and keeping up his oxygen that they took him off of the ventilator.  After almost 24 hours he had to go back on, because it was too much work for him to keep breathing on his own.  About a day later, he was doing so well that they extubated him again.  That time he could only breathe on his own for a few hours before needing to be intubated again.  I remember seeing him struggling to breathe on his own, and wishing they would just put the ventilator back in.  It was painful to watch him like that.  He had quite the nap after being intubated again!  He was so peaceful.

They did multiple chest x-rays a day, and his lungs kept looking fuzzier and fuzzier until one lobe of one of his lungs was almost completely collapsed.

At six days old they did a routine (for early preemies) heart ultrasound that diagnosed him with PDA (Patent Ductus Arteriosis).  The Ductus Arteriosis is a duct in the heart that is open during pregnancy to allow the blood to bipass the lungs, because an unborn baby doesn't get oxygen from their own lungs, they get it from their mother.  The duct is supposed to close when a baby takes their first breath, but since Caleb didn't take a breath on his own until he was a whole day old, his duct didn't close.  When the duct is open, it can allow fluid to enter a baby's lungs.  Usually, even when the duct is open, it is closed just enough that a nurse can hear a slight murmur when listening to the heartbeat.  But Caleb's duct was so wide open that there wasn't any friction from the blood passing through to cause a murmur at all.

When the nurse practitioner called me to tell me the news, she said not to worry, it was very common in preemies, and the duct commonly closes with a three-day course of a special type of ibuprofen.  I really wasn't worried at all.

So after the three day treatment was over, they did another heart ultrasound.  It was still wide, wide open (they still couldn't hear a murmur), so they decided that they needed to do surgery.  I was scared, of course.  My little baby was still well under three pounds.  (He didn't hit three pounds until his three-week birthday.)  But I was more excited than anything--I couldn't hold him until he was off of the ventilator, and he couldn't be off of the ventilator until he could breathe on his own, and he couldn't breathe on his own until his lungs were clear and functioning, and his lungs wouldn't be clear and functioning until his PDA was closed.

That day was a Friday.  They couldn't schedule the surgery until Monday morning, so they decided to give him two more days of the medication, because, well, why not?  They were not hopeful at all that the medication would work, because three doses didn't even close it a tiny bit.  But there was no harm in trying.

Sunday night I couldn't stop thinking about how I, myself, had never had surgery, but how my tiny, tiny baby would be getting surgery at just 11 days old.  It seemed so unfair.  I had a hard time watching him go through something that I knew nothing about.  I wanted to feel empathy, but I didn't know how.  So I just felt fear and sadness.

Monday morning rolled around, and we were told to be at the hospital by 7AM to talk to the surgeon before the surgery.  It was a simple surgery, performed right there in the NICU.  Caleb would stay in his isolette the whole time.  For that reason, they had to call every parent in the NICU to tell them that they wouldn't be allowed in the nursery from 7-8AM.

So we stood by Caleb's bed as the surgeon talked to us about the risks.  Infection, which is the number one killer of babies in the NICU.  A cut or strained vocal nerve that helps the vocal cords function and could lead to a very soft, raspy voice and may cause him to need speech therapy.  The scary side effects of anesthesia and having a hard time waking up (and possibly not waking up).  The possible need for a blood transfusion.  For some reason the surgeon felt the need to tell us the exact chances of Caleb contracting HIV from a blood transfusion.  Too bad he had already had two by then (and had a third later that week).

Although the surgery would only need a tiny incision under his left arm that would be so small that they would put a steri-strip over it when it was all said and done, Nate and I were still scared.

So after talking to us about exactly what would happen and exactly what risks were involved, just before ushering us out of the nursery to wait in the Parents' Lounge while they cut open my baby and reached inside of him to place a clamp on a duct in his heart, they did one last heart ultrasound.

And do you know what they saw?

Nothing.

His duct had closed on its own.

And that's when I knew that God loves us enough to provide miracle after miracle after miracle.

By that evening, Caleb's lungs were so clear that they took him off of life support for the last time.  The next day, at 12 days old, I got to hold him for the first time.

It was the happiest moment of my life.

Goin' Shoppin'!

Caleb loves cars.  He loves them more than anything else these days.  He plays with them all of the time.  He uses the space on the entertainment center in front of the TV as a sort of road.  He uses his imagination (which is so fun for me to see!).  This is the conversation that we have many times a day:

Caleb: The red car doing to da store!
Me: Which store?
Caleb: Walmart store.
Me:  What are you going to get at the store?
Caleb:  Kitty cat food!
Me:  Who is going to eat the kitty cat food?
Caleb:...Doggy food!

Well, now when I ask Caleb who will eat the kitty cat food, Caleb can answer, "Captain Hook!"

Meet Captain Hook:

He is a very dark tabby who we "rescued" from the shelter.  He and Caleb have become great friends (Caleb is better with him than I expected!) but he and Meggie are not good friends.  Meggie doesn't mind him, but Captain Hook sure doesn't like Meggie!  He was very easy to litter box train (don't you love that about cats?) and he has taken to sleeping in a box that is tipped over on its side on the stairs at night.  He loves Nate and wants to take his daily nap wherever Nate is.  He's very pretty and rather stinky, even after a thorough bath.  Despite his stinkiness, we think he'll make a nice addition to our family.  :)

This is the conversation that Caleb and I had today while playing with his cars:

Caleb: The big gray truck goin' to da store!
Me: What is the big gray truck going to get at the store?
Caleb: Tummy food!  [That's what he calls the formula that goes through his feeding tube.]

I was so excited to ask Caleb, "who is going to eat the kitty cat food?" and hear him say, "Captain Hook!"  I suppose now that we have a cat we can't depend on Caleb to get the kitty cat food when he goes to the Walmart store.  ;)

Russell is 5 months old!

Where has the time gone?  Seriously, these boys just don't stop getting older!  (It's just getting bigger that we have a problem with!)

At 5 months, Russell:

• Fits size 0-3 month clothes perfectly except for his arms, which are too long to be covered to the wrist.  Yes, my 5-month-old wears size 0-3 month onesies, pajamas, pants...everything.  We haven't felt the need to get out any 3-6 month clothes yet.  Yep, he's a little bit small.  Look at those ribs!: 
• Wears size 2 diapers (thankfully he can wear the cheap brand of Huggies...Caleb is allergic to everything but Huggies Little Movers, Huggies Pure & Natural, and Pampers Sensitive.  But then, Russell is allergic to wipes.  Seriously, kids!  If you're gonna have allergies, you should be allergic to the same things!  It would make my life easier!)
• Is rolling over proficiently.  He actually enjoys being on his tummy now that he has control over it.  He sleeps on his tummy, too, even though I always lay him down on his back
• Is in some sort of hurry to get places.  Look at him trying to get his knees up under himself!  He hasn't tried to do this since then, but still, I swear he'll be crawling before I know it!

[And notice the bond between the two boys?  Russell loves Caleb, and Caleb loves Baby Russell!  Caleb never, ever, ever holds still for that long unless he's asleep!  He won't even hold still that long while watching Mickey Mouse Clubhouse!  He just really loves his brother.  :)]

• Sleeps in his own room.  After my sister moved back to the Northwoods, Nate and I decided that it was time to get Russell sleeping better.  So we moved Russell out of the bassinet in our room and into the pack'n'play in his own room.  (This was the first night that Russell learned how to roll onto his tummy, so it was good timing!  He has been sleeping on his tummy from that night on!)  Before that night, teething had ruined him.  He was waking up 5-8 times a night, and the only thing that would comfort him was nursing.  The most sleep I got for those few weeks was while he was nursing.  It was wearing on us all.  So Nate spent the first few nights in Russell's room with him and we set some rules: 1) Russell was not allowed to sleep in bed with Nate. 2) If he woke up more often than every four hours, he wasn't allowed to nurse and Nate had to find ways to comfort him without bringing him in to me (I couldn't be in the same room as him because if he could smell me then all he would want to do is nurse). 3) When Nate brought him to me so I could feed him, I had to set a timer so he wouldn't nurse for more than 20 minutes total.  We had a habit of falling asleep in bed together and I would wake up an hour later to put him back to bed, and he would wake up 30 minutes later to eat again.  The sleep I got was never very good quality, and he used me as a binky.  After a couple weeks of 20 minutes of nursing, I decreased it to 14 minutes.  In a few more days I'll decrease it to 12 minutes, and so on, until he doesn't feel the need to be full during the night and can sleep longer without needing to nurse at all!
• Goes to bed around 9-10PM and wakes up to eat at about 3AM and 8AM (although sometimes it's more like 1AM, 4AM, & 9AM).  Right after his 8AM feeding we chat for a few minutes and then I put him down for his "morning nap" (I know, it's a lot to expect, but that's how it worked for Caleb and it fits with our lifestyle).  He then sleeps until 11AM or noon, when I feed him again.  Then three hours later I feed him again and put him down for his afternoon nap, around 3PM.  Then he sleeps until about 6PM, when he and Caleb both get up from their naps and we eat and play for three hours and go to bed!  It works for us :)
• Has a favorite toy:

• Looooves being held up in the air and kind of shaken.  He also loves it when you make him "dance."  This kid just loves movement!
• Is getting Caleb's long, dark, curling eyelashes.  YES!  *insert fist-pump here*
• Finds comfort in holding and chewing on my hair (just like Caleb did) and holding his feet.  Yes, that's right.  When I change his diaper and clothes and he's not happy because he would rather be held, he grabs a foot and holds it (sometimes chews on it) and it calms him down.  Just today he fell asleep playing with his foot and he slept with it in his hands for a good 20 minutes (until he woke up)!  I think it's rather cute.  :)  I just hope he doesn't start sucking on his toes like a thumb...that could turn into quite the gross habit!
• Does well in the little cheap-o stroller, but boy do I miss our nice Chicco! Just look at that face!  I could eat him up!
• Sucks on his lower lip off and on for about half an hour when he's done nursing.  It's so nice that he's developed a few self-soothing methods lately!

         

• Is still super duper ticklish!  And just gets more and more irresistible!: