Elliott......HEALED!

On Monday, May 21st we took Elliott to the lab to have blood drawn.  It had been close to 2 months since his last blood draw and we were really, really dreading it.  Each draw has gotten more and more difficult as he has aged.  I started out keeping track of how many draws he had, but once we got above 10 I stopped writing them down. 

When he was 1 month old he would sleep right through a blood draw.  At 2 months he would fuss a little bit and then easily recover.  At 3 months he cried, a lot.  Now, at 5 months we could only imagine his horror that we would let these people stick a needle in his arm while we held him down.

Luckily, and to our surprise, it went better than expected.  His veins roll a lot (apparently all baby veins do) so they had to poke around a lot to get the needle in the vein, but once they did he was fine.

(I will have random pictures of Elliott from the past 2 weeks throughout this post)

On Thursday, May 24th we had another follow-up with Dr. Miloh and nutrition.  This was a big appointment because it was where Dr. Miloh was going to recommend a liver biopsy or not based on Elliott's liver enzyme numbers. A normal level for GGT (a liver enzyme) is 12-120.  Elliott's had gotten up to 1,503 at its highest.  His other enzymes were elevated too, but not as much.

First, they weighed him.  13 pounds.  Then we waited in the exam room.  In they came.  I was holding my breath.

Dr. Miloh wasted no time in telling us that his bilirubin was normal (total and direct) and they are actually both at the bottom end of normal.  They can't go any lower.  His ALT and AST were also normal (right smack in the middle of normal).  His GGT was 140!  Only 18 points above normal. 

Dr. Miloh declared him to be officially over his neonatal cholestasis.  He has a functional liver.  He said, in these exact words, "he is a normal, healthy baby.  He does not have any medical problems."

Since none of the testing (ultrasounds and blood work) showed that Elliott had any structural or metabolic issues, the best guess is that Elliott had an immature, not yet functional liver because of his prematurity.  Just as it was starting to mature and work (the blood tests from when he had regular jaundice showed his bilirubin levels were starting to improve) he got sepsis and a vulnerable-to-begin-with- liver was all of a sudden forced to contend with filtering a body full of e.coli bacteria.  Filtering all that e.coli out of his blood sent his liver into a tailspin and it took him this long to recover.

Dr. Miloh does not expect that he will have any more issues.  He told us to stop giving Elliott his liver medication.  We're doing one more blood draw and one more follow-up in November, right before Elliott turns one.  That blood draw should be a blast.  Anyone want to go out for margaritas after it?

The not-so-pleasant nutrition witch lady didn't have much to say.  When Elliott was first diagnosed with neonatal cholestasis his weight was 77% what it should have been for his height.  His body just could not absorb fat.  He is now at 92%.  Anything above 90% is considered OK.  OK, as in, no need for a feeding tube.  I still think that she wasn't happy with his weight and thinks I'm crazy for being so hardcore about nursing.

I asked the nutritionist if there was any reason that Elliott needed to continue receiving pregestimil or if we could supplement with a formula that is easier (not to mention cheaper) to get.  She said we should continue with the pregestimil because the MCT oil is still good for him and will help him to grow.  Then (and this was the best part of the appointment, other than hearing the good news about Elliott), Dr. Miloh told her she was wrong and Elliott didn't need pregestimil because he no longer has a fat malabsorption problem.  He said we could put him on whatever we wanted.  

 

 

We've been supplementing with pregestimil since February and we've gone through about 15 cans of it.  Of those cans we only had to purchase 1.  It was $33 dollars, though, so that means we got about $500 of free formula in the form of "samples".

Since we don't have to go back to Dr. Miloh until November and we no longer have to work with the nutritionist (yay!), our pediatrician is back to being completely responsible for Elliott's care.  We had an appointment with her today.  Elliott gained 13 ounces and 3/4 of an inch in one week.  We have changed nothing (well, we did start with a bit of solid food, but not 13 ounces worth) so I take this as real proof that Elliott has a totally functional liver.  If he gets to 14 pounds by 6 months (and he totally will-that's 3 ounces in 16 days) he will be AT the 5th Percentile.  I will take it!

 

 

The plan from here is that we are slowly reducing the pregestimil and changing him to gentlease formula (that is available on the shelf of any store!).  We are also going to wean him from duocal over the next 10 days.  We'll go back for his 6 month check-up in 18 days and she wants to see how he gains without the duocal.  Then we'll reduce the amount of calories in his formula.  Right now we mix it to be 26 calories an ounce.  We'll go down to 24, then 22 and then 20.  Then, as we increase his amount of solid food, we'll decrease the amount of formula.  The only problem with this plan is that Elliott is addicted to the supplementer.  He likes the immediate flow and the constant flow that you don't get with straight nursing.  At this point he will not nurse without it unless he is already full and sleep nursing.  

 

 

I started using the supplemental nurser, instead of supplementing with bottles, because I plan on nursing past age one.  If I have to keep using the supplementer I will.  At some point (probably around 12 months) I'll start using water instead of formula.  I also hope that he'll be more likely to nurse without it once nursing becomes more for comfort than for food.

Dr. Miloh mentioned to us that it can be difficult to accept that a baby that was once really, really sick is now healthy.  He told us that it will be hard to change our frame of mind in thinking that Elliott is really fine.  When he told us that I thought, "whatever, I totally accept it.  I'm thrilled". Then, about 4 hours later, while I was nursing, I thought, "damn.  He was right." 

It actually is really hard to change our thinking.  In February I was convinced that Elliott was going to die and if he didn't he would need a liver transplant, and even then he still might die.  I was ready to have them cut a piece of my liver out to give to him.  I spent a lot of time thinking about how I was going to mother this really sick baby and how I was going to mother his brother.  I worried about Spencer and how his life would change with a sick sibling or a sibling that died and a mother who would then lose her mind.  I worried about the pain and suffering Elliott would face and if he would ever be able to do things like swim lessons and play dates and baby gym class.  And now, just 3 short months later, I have nothing to worry about.  Really.  I don't worry about a lot of the stuff I worried about with Spencer, because it all seems pretty inconsequential with what we have faced.  That doesn't mean, though, that I feel any less protective/over protective.

Our pediatrician said that she has worked with families that had sick babies that took until the kid was 2 or 3 to really recover and accept that they were OK.  I believe it.  I have been worried about Elliott really, since the day I found out I was pregnant, but definitely since December 5th when I went into labor at 33 weeks.  It took almost 6 months but I finally feel like I can stop worrying so much.  I hope it makes me feel better because worrying is exhausting.

It's weird and wonderful at the same time.

I'm Back

  I'm back. Finally.  Getting our computer fixed took waaaaaaay longer than anticipated.  Life without a computer is no bueno.

  This is the two week saga:

  When our hard drive failure was imminent we contacted the Geek Squad at Best Buy to fix it and make it better.  They told us we needed the set-up disc specific to our computer for them to do anything.  We didn't have that disc because, this is too perfect, the Geek Squad set up our computer when we originally bought it and they didn't ever give us the disc.  So, we contacted HP to get the disc.  They told us that the hard drive for our computer was no longer being made/sold and we would have to just buy a whole new computer.  They actually told us that if we tried to save data from our old hard drive on to a new one it would corrupt everything.  Lying bastards.

So, Michael called the IT guy at his work.  He does private consultations in his off time.  He took our computer for 5 days, bought a new hard drive and transferred everything.  Successfully.  For less than $200. I was really, really, really worried that we had lost 3 years worth of pictures.  I got lazy in  June of 2009 and haven't backed up pictures since then.  Bad me.  Guess what I will be doing this summer? I do have thousands of pictures in my picasa albums that are all from the blog, but it would have sucked to have lost access to ALL of our pictures.

Now I'm behind on the blog.  It's like when I had to catch up after my 2 week bed rest in the hospital stay and Elliott's almost 2 week in the hospital with sepsis stay.  

These are some of the things I need to cover:

1) Elliott's latest appointment with Dr. Miloh (the hepatologist).  We got very, very, very good news.  That will be my next post because it's just mean to say that we got good news and not share it ASAP.

2) Michael's birthday.

  

3) Elliott starting solids.

  

4) Spencer finishing school for the year (including comparison pictures of his first and last day while wearing the same outfit).

  

5) Some stuff about my job.

 6) A random post with pictures that don't fit anywhere else.

  

But, Elliott will be up in the next hour-ish and instead of blogging I am going to foolishly try to go to sleep before then, resulting in me feeling like I am paralyzed and suffering from Alzheimers disease when I get up after only sleeping for 45 minutes.

  

Until my next post these tid bits will have to keep you entertained:

  

Spencer has been sleeping in a tent on his bed for 2 weeks.  He shows no signs of becoming bored with this set up.

Elliott can successfully fit 5 fingers in his mouth at once.  He's working on 6, but this currently results in gagging that lasts for minutes.

He also has the best back of the head hair I have ever seen. 

I mean, what is up with that line where it goes from random curly to straight up and down?  Is that part of his DNA?  Does an enzyme or a hormone control that?

All three of these bums continue to ruin each and every attempt at a beautiful picture for my blog header.

Crash

I am writing this post on my kindle fire. Did I mention I bought a kindle fire? Last spring (in a moment of great clarity and foreseeing of the future) I bought a short term disability policy for myself. I am self employed and work less than 25 hours a week so it was VERY difficult to find a policy that would cover me. But I persevered, knowing the loss of my income would be devastating to our family. I was thinking more along the lines of car accident, but then I found myself in the hospital on doctor ordered bed rest for 2 weeks. And guess what? My policy has a hospital rider, so I got paid for that time. Generously. Like more than I actually make when I work. Most of it went to paying our taxes. A big chunk is being saved for when I don't work over the summer. I wanted to buy a huge flat screen TV with the rest, but the policy didn't pay that well. So I bought myself a kindle fire as a reward for sleeping in a labor and delivery bed while dilated to 8 cm for 2 weeks. Anyway it's a good thing I did because our hard drive crashed yesterday. The actual message said that a hard disc failure was imminent. We have an appointment with the Geek Squad tomorrow to buy a new hard drive and have them transfer everything. I will have a hard core meltdown if we lost everything because I got very lazy about saving pictures to an external drive in, oh, 2009. Good thing I usually include 154 pictures with every post. Until we get the whole mess straightened out, I'm on this and my phone. I hate leaving comments on my phone, so you might not hear from me on your blogs for a bit. P.S. This is my 700th post. I was hoping to do something awesome. Definitel y not this. P.P.S. The kindle fire is great for web browsing, reading, games, watching movies,etc. Writing blog posts? Not so much.

5 Months

5 Months!

Date

May 16, 2012

The official 5 month picture

Weight/Size
Elliott had a weight check at the pediatrician's last Thursday and was 11 pounds 14 ounces. He was 24.5 inches.  He was gaining about an ounce a day so I'd guess that he is about 12 pounds 5ish ounces today.  We see Dr. Miloh next Thursday for a liver appointment so we'll get another weight check then. 

 

 

Elliott is wearing 3 month and 3-6 month clothes.  He is totally out of newborn and 0-3 month clothes.  The outfit he is wearing in these pictures is actually 6-9 months.  It's a little big.  He is wearing size 1-2 diapers, but his tummy has gotten so round that they are tight around his belly!

Sleep

This varies a lot.  Some days he takes no morning nap, some days he takes an hour morning nap.  Some days he goes down for his afternoon nap for 2 hours without a peep, some days I am in there every 15 minutes rocking him.  He sleeps great, every night, from about 9 pm to between 12 and 2 am.  He is up every night, without fail, between 12 and 2 and again between 4 and 5.  I nurse him and he's back to sleep again until between 7 and 8.  Not a night goes by that I don't rock him at some point.  He stopped sleeping with me in bed after his acid reflux got really bad about 3-4 weeks ago.  We just couldn't get comfy together.  He's been sleeping naps and night in the rock n play. Even though we love it so, Elliott is getting too long for the miracle blanket.  He sleeps so good with it, but he gets mad that his legs are all bunched up.  We tried the halo sleep sack swaddler which is longer, but he busts out of that within an hour.  Just last night we went back to the merlin magic sleep suit now that he is officially within the correct weight range.

Movement
Elliott wants to stand all the time.  He likes standing on our laps and he likes when we lay down in bed and let him stand on our stomachs.  He is still rolling from tummy to back, although he will stay on his tummy for longer now.  He is SO close to rolling from back to tummy.  He can get almost there and then his arm gets in the way and stops him from going all the way over.  Spencer had the same problem at this age. Elliott loves it when we blast him into the air and do baby benchpresses.  He started playing in the jumperoo last week.

Communication
Lots and lots of cooing and prebabbling.  He hoots all the time.  Michael came home from work and Spencer, Elliott and I were hanging out on the bed together.  Michael asked if there was an owl in the room.  He laughs when we do something silly or when we tickle him.  He can make eye contact like nobody's business.  We have entire back and forth conversations that last minutes made entirely and of hoots and grunts.

Sweet Remembrances

1.  Elliott's first picnic in the park

2. Elliott's glamour shots at Sears (that we still haven't received.....don't even get me started on THAT one)

3. Elliott starting to sit in the high chair and liking it.

3. Elliott going in the jumperoo for the first time and loving it.

4. Going an entire month (6 weeks actually) with NO blood draws.

5. Being completely off (completely unneccesary) seizure medication and having no ill effects from the weaning process. 

Spencer took this picture!

Food
Nursing 8-9 times a day. Still supplementing with pregestimil formula and duocal.  If his liver enzymes are looking better we are looking forward to decreasing the formula and duocal as his ability to digest and absorb fat improves.

 

 

We're going to ask Dr. Miloh if there is any reason we can't start solids because of his liver issues.  This boy is ready to eat.  We'd like to start at the beginning of June if we get the go-ahead.  Banana is at the top of our list.

Mood
Happy!  He fusses when he wants to be standing and he's not.  He fusses as he's getting tired.  He cries when he gets too hungry.   Other than that he's a pretty happy guy.  With that said, I decided to take both kids to Target this afternoon.  I was nervous about germs, but we have permission from his pediatrician to rejoin the world.  I was so happy because he didn't cry in the car at all on the way there and I was thinking, "this is going to be great.  We're really doing this".  I got him out of the car seat, into the front carrier and we walked into the store.  He was fine.  We walked over to the carts.  I pulled a cart out.  Elliott started crying.  Screaming, actually.  I spent 10 minutes (hiding in an aisle) trying to calm him down.  He just got louder and more upset.  Nothing I did worked.  After 10 minutes I decided to leave.  Spencer and I were both pretty disappointed.  We love ourselves a Target trip.  The only thing I can think is that he was completely overwhelmed because he is 5 months old and is familiar with only 1) our house and 2) hospitals and doctor's offices.  Maybe Target was too much for him.  Or maybe he was on fire because it was 106 degrees and he is used to a life of air conditioning.

Medicine
No more keppra! He took his last dose on April 26th.  It's too bad that we had him on antiseizure medication for 4 months when he never needed it.  He is still taking ursodiol for his liver.  He is still on a multivitamin.  We started him on zantac for acid reflux last week.  It's helping a lot.  Spencer was on it too at this same age and eventually he just stopped having problems even with no medication. 

Likes and Dislikes

Likes: standing, being tickled, blasting off like a space ship, the jumperoo, sittting in the high chair (most of the time), sucking on his fingers.

Dislikes: going to Target

Mama's Mental Health
I'm adding this heading this month because between 4 and 5 months has been huge for me.  It's the first time that I haven't felt like I was going to lose my mind since Elliott was born.  #1) All of his health issues are resolving.  There were no more seizures to worry about (apparently there never were!) and his liver stuff just keeps getting better and better.  He's also gaining weight and the threat of a feeding tube seems to be less and less of an issue.  I no longer spend hours each day reading medical journal articles online.  The only thing I'm worried about, daily, is not knowing if we're going to do a liver biopsy or not.  #2) We're definitely out of the newborn phase.  I can sit Elliott in his seat or the rock n play and take a whole shower (it's still quick), without him crying the whole time.  That's HUGE.  #3) We have more of a routine, which makes each day more predictible, which makes me less crazy.  #4) Elliott's nursing is way more efficient which gives me more time in between.  I have an app on my phone for tracking when he nurses and for how long.  In January, we were nursing for 9ish hours in a 24 hour time frame.  We're down to 3-4 hours now. That's also huge. #5) He is sleeping so well independently.  Yes, I still nurse and rock him to sleep.  There is no "just put him down drowsy" fairytale in our family.  Yes, I still have to rock him a fair amount during naps and 1 or more times during the night.  But he sleeps on his own way more than with my assistance.  Again- HUGE!

Well, it looks like I took more pictures than I had headings for.  And I didn't even include like 40 of the pictures I took.

If you made it all the way here, thanks for reading.  I print these monthly reports for Elliott's baby book, which is why they are so detailed.  I have this delusion that Elliott is going to care when he's an adult.  Maybe his wife will.  I commend you for your dedication.

I took this just after midnight last night, so technically it was the 16th. 

This is sumo baby.

Mudder

Spencer still does not have the "th" sound in his phonemic repertoire, therefore I am his mudder, not his mother and we celebrate mudder's day in this family.

 

 

The day started with Elliott and me nursing (it was actually the third time of the day if we're being perfectly honest), Michael going to pick up our breakfast from Chompies and Spencer making a "list" of places I needed to look for my hidden present that he made at school.

  

This is the list.  #1 (on the right) is the laundry room refrigerator.  Can you tell what the things on the left are?  From top to bottom: Spencer's closet, the bathtub, the guest room closet, the living room chair, under the kitchen table and Elliott's crib.  Duh. 

Once Elliott was nice and full and the list was made, we enjoyed our breakfast in.  I don't think we'll  ever again go out to breakfast on mother's day.

  

Spencer had eggs, bacon and a bagel (not pictured- it was being cream cheesed).

Michael had eggs benedict.

I had an omelet, a potato pancake and an english muffin.  I ate it all.  And then I did not eat for the rest of the day.

Elliott chomped on a spoon.

Ginger licked her lips in anticipation, but no morsels were shared with her.  Sad.

After breakfast it was time for presents and pictures.

This is what Spencer made me.  It was hidden under the chair in the living room.

I FINALLY have enough silicone egg poaching cups to make 2 poached eggs for each of us at the same time.  It took 3 mother's days to accumulate 6 of them.  This will no longer be true when Elliott starts eating eggs, so Michael will have to buy me 2 more next year.

I got this sign to hang above the coffee maker.

I also got a dress, a shirt, a frame for the picture we had taken of the boys at Sears and fuzzy flip flop slippers.

It was the best mother's day ever!

Kisses for all.

Later in the day Spencer and I went to Target.  I bought Elliott his first pair of sunglasses.

This is him saying, Jesus Christ! Take. These. OFF!

Jumperoo

This was Spencer the first time we put him in the jumperoo. It was his 5 month birthday (February 6, 2008).  If I remember correctly he started crying right after I took this picture and it took something like 2 hours to calm him down.  Even after he was calm he kept losing it again all day.  He'd just start crying out of nowhere.  Man that kid was intense as a baby.  He was in overdrive all. the. time.

So here we are 4 years later and the baby of extreme emotion is now the big brother.  We decided to put Elliott in the jumperoo tonight.  He likes standing so much that we thought he'd be happy to be able to stand on his own.  He's just ever so slightly too short, even on the lowest setting, so Spencer happily carried his biggest book from his room to the living room.

It ended up being too big of a book. Elliott should be on his tippy toes and not flat footed.

He wasn't sure what to think of it at first.

Hmmm.  Do I like this?

Then Ginger came over to check out the commotion.

Then Spencer got all up in Elliott's business.

Then Ginger felt momentarily ashamed.  Of what we do not know.

And then Elliott started bouncing around like a madman.

The verdict?

He loved it.

We're so glad.

I mentioned before that my friend Sandy gave the jumperoo to me when I was pregnant with Spencer.  I'm so sad that I don't get to share Elliott enjoying her gift with her.

I've had the same dream about Sandy twice in the last couple of weeks.  I'm at a party and the doorbell rings.  Someone opens it and Sandy comes walking in.  I run over to her and give her a big hug and say, "But Sandy, you died.  There is no way you can be here.  I don't understand this."  Then she laughs and says, "No, that was all a big mistake.  I never died.  It wasn't me.  It's so crazy and it's been a huge mess." 

I don't think it takes a psychologist to figure out what that dream means.