Wednesday, February 29, 2012

February 29

Leap Day 2008

Leap Day 2012

I can remember taking those pictures in 2008 like it was yesterday.  Spencer was almost 6 months old and was just barely starting to sit on his own.  I can remember sitting him in the crib and making him smile so I could get some cute shots to commemorate his first Leap Day.  Then I emailed them to people because I didn't blog yet.  It seems impossible that it was 4 years ago.  When Leap Day comes around again Spencer will be 8.  That is unbelievable.

And now, here we are with 2 kids on Leap Day.
Elliott, being 2.5 months old, is nowhere near old enough to be sitting on his own.

This pillow was a joke in providing support.
A bigger one, vertical?
We had an appointment with our pediatrician yesterday.  Elliott got the rota virus vaccine because Dr. Miloh said it was fine to do so.  So far Elliott's had no reactions to anything.  Spencer never had reactions with any of his shots, so hopefully Elliott will follow in the same footsteps.  We also started him on some of the special MCT supplementary formula today.  Our pediatrician wanted us to start it now so that when we see the nutritionist in a week we can see how much he has gained and the nutritionist can then recommend that we give him more, less or the same.  I am giving him 10-15 mL (which is 2-3 teaspoons) every time I nurse.  She wants me to give him small amounts all day long as opposed to one large amount once a day because it will help him to better absorb breast milk each time he nurses.  So far, so good.  This formula has a very strong taste and some babies refuse it, but  I am giving it to him by syringe so he just thinks it is more medicine and he loves medicine.

Tuesday, February 28, 2012

Transportation Day Part III

Sigh.  Spencer and Michael went to Transportation Day without me.  And they had fun.  And Spencer didn't seem to miss me.  Sigh.  I am already looking forward to taking 5 year old Spencer and 14 month old Elliott in 2013.  I'm already planning the cute pictures I will take of them on the school bus.

Since I wasn't there this year I have no funny stories to tell.  Even though they enjoyed themselves, Michael and Spencer, being boys, were pretty vague on the details.  You can always review Transportation Day 2010 here and Transportation Day 2011 here if you want some of my commentary.  All I can offer this year are labels.

In the back of the ambulance
Fire Truck

Golf Cart
Police Motorcycle
Back of Police Car
I only condone Spencer sitting here on Transportation Day.  At no other time in his life should he be here.
City Bus
Truly Nolan Limo
Construction Vehicle

Garbage Truck
School Bus
Michael and Spencer saw Karen, Bernie and Tyler while they were there.  Michael took Bernie and Tyler's picture in the school bus. They didn't even know he was doing it.  Michael is a stalker.
Just for fun:

Oh, and in the interest of being fair:  A little Elliott.  Baby boy finished his nap all by himself in the rock n play on Monday.  It was in the bathroom from when I took a shower that morning (and he layed in it SCREAMING), so I left it in there for his nap.  I actually had to wake him up because it was time to eat.

Friday, February 24, 2012

10 weeks and Liver Update

Elliott is 10 weeks old today.  That's 2 weeks from 3 months!  3 months is 1 month from 4 months, which is 2 months from 6 months.  Not like I'm counting or anything.  I don't want to wish away the days of him being tiny, but.......oh who am I kidding.  I really dislike (hate) the newborn phase.  I am much better with older babies and much, much better with toddler and up.  Give me a 3 year old any day of the week.
So, I wanted to talk about on the appointment with Dr. Miloh that we had on Wednesday.  Elliott's bilirubin three weeks ago was 3.6.  It is now at 3.0.  That is good.  It is going down.  Dr. Miloh did say, though, that it is not going down as much or as fast as he expected or would like (normal, by the way, is .4)  The big shock was Elliott's GGT level.  GGT is short for gamma-glutamyl transferase.  GGT levels may be used to determine the cause of an elevated alkaline phosphatase (ALP). Both ALP and GGT are elevated in disease of the bile ducts and in some liver diseases, but only ALP will be elevated in bone disease. Increased levels of GGT levels may indicate in general that the liver is being damaged but does not specifically point to a condition that may be causing the injury.  Elliott's GGT level has been trending down since we first started testing it.  Normal for a baby his age is in the 100's.  A month ago his was 330. Then it was 296.  At our last appointment it was 255.  This week it was 1,300.

We were floored.  Speechless.  I kind of had to brace myself on the desk when Dr. Miloh gave us that number.  He told us that we shouldn't get worked up over one number on one test on one day, but really, 1,300?  He also requested that we track down the chest x-ray that Elliott had during his sepsis hospitalization, because sometimes an elevated GGT level can indicate congestive heart failure.
Based on the new lab numbers, the previous ultrasounds that we had, how long we've been dealing with this, and the news that the seizures were continuing, Dr. Miloh is now exploring the possibility of a rare metabolic disease.  Elliott passed his newborn screener that looks at the 28 most common metabolic infant diseases, but there are thousands of others that are not screened.  Elliott had more blood taken at the lab at Phoenix Children's Hospital and also a urine sample so they can start testing.  Some of these tests take weeks to conduct and have to be sent to labs outside of the state.  It will be a while before we have the results of everything.  One thing that we do know for sure is that Elliott does not have alpha 1- antitrypsin.  Those results were finally back.  I won't even explain what that is, because we know for sure he doesn't have it.
Dr. Miloh was very interested to hear that the latest EEG was positive for continued seizure activity.  We told him that we made an appointment to see an epileptologist at Phoenix Children's Barrow's institute but can't get in until April.  He said that he would try to "pull some strings" to get us in earlier.  He has a hunch that the seizures are part of the big picture and we need the epileptologist on the team to help figure it out.  We're grateful that he's going to use his position for an extra push, but also terrified that he thinks it is so important.  I'd rather be told that it's not a big deal.
We also talked a lot about Elliott's growth.  Dr. Miloh wants us to start working with the nutritionists in his office.  I checked out a book called Diseases of the Liver and Biliary System in Children from the U of A Health Sciences Library.  This information was taken directly from this book.  It really explains what we are up against:

There are many causes of cholestatic liver disease, which can be divided into two groups: those presenting in infancy and those presenting in the older child. Babies with cholestatic liver disease usually have increased energy and nutrient requirements, up to twice the estimated average requirement, as a result of malabsorption, higher energy expenditure and infection.

Most infants with cholestatic liver disease will require feed modification. If bile flow is limited from the liver into the gut, fat emulsification and digestion are reduced. This causes malabsorption of fat, fat-soluble vitamins, essential fatty acids and some minerals, leading to steatorrhoea, growth failure and rickets.

Cholestatic babies often consume huge volumes of standard infant formuls or breast milk, because of malabsorption of Long-Chain Triglycerides (LCT) in dietary fat, which require bile for digestion and absorption. As fat is the major energy source at this age, the infants are not satisfied by their milk and consume large volumes to compensate. To promote growth it is essential to improve absorption by manipulating dietary fat and substituting LCT with Medium Chain Triglycerides (MCT). MCT does not require emulsification with bile and is absorbed directly into the portal vein.

Cholestatic breast-fed babies will demand frequent feeds, which is exhausting for the mother. Mothers are encouraged to continue breast feeding when possible, but the introduction of an MCT-containing formula, as a top up or supplementary feed, will reduce demand on the mother.

MCT containing formula should continue until the infant’s bilirubin level is within normal range or the child has had a liver transplant. If growth is still failing, despite resolution of cholestasis, the introduction of a high enery infant formula can be successful in maintaining growth.

Dr. Miloh did point out at the appointment this week that there is absolutely no reason for me to stop nursing.  He even said that Elliott must be getting a great deal of milk from me because he is actually gaining weight, just not as much as we would like or as much as he would without the cholestasis.  Some babies with cholestasis gain nothing at all, even on a diet of pure formula and even when solids are added.  That made me feel better. He said there is no reason I need to change anything until we meet with the nutritionist in 2 weeks because we are not at a "critical" point yet.  When we do meet with her we are going to talk about food supplementation, as well as vitamin supplementation, which we have already started.  His vitamin drops contain between 200-1000% of his daily needs (depending on the vitamin). 

Dr. Miloh did give us a free sample of the type of formula that we will need to start supplementing with if it comes to that.  It is called Pregestimil, for babies with fat malabsorbtion problems.  He gave us the sample because #1) This formula is not available off the shelf.  It must be prescribed by a doctor and you buy it from a pharmacy, and #2) One small can of it usually costs around $30.

If Elliott continues to have cholestasis and growth problems as he gets older the book gives suggestions for getting extra calories into toddlers and kids.  They include adding butter, cheese and heavy cream to everything you can, frying all meats in oil and butter, adding sugar to everything you can and encouraging the consumption of fatty, sugary snacks.
How do you think it's going to go over with Spencer when he is eating his healthy, well rounded dinner and Elliott is eating fried chicken, cheese and cookies? 
Well, that is it for the depressing update.  Spencer and Michael are going to Transportation Day tomorrow.  Elliott and I are staying home to nurse about 80 times and hopefully nap.  The next post will have some great pictures of Spencer with trucks and cars and buses.  I'm crossing my fingers for it because, if you'll remember, Michael took zero pictures at Disneyland when I was in the hospital.

P.S. On a very positive note, Elliott is lifting his eyebrows (like a curious look) when he makes eye contact and he was genuinely smiling at me today.  It lasted about 5 minutes and then he started fussing again.
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Thursday, February 23, 2012


We had an appointment with Dr. Miloh (the liver doctor) yesterday.  We were there for almost 4 hours.  We got some not so great news.  I'm going to write a whole post about it but I do not have the time or the energy right now.  It took 10 weeks but I am officially exhausted.  I'm falling asleep at random times during the day (for like 30 seconds at a time.  It's more like narcolepsy, not a decent nap), my leg is twitching and I'm having word finding difficulty.  So, right now I'm avoiding the subject entirely and talking about some of the other stuff that happened this week.

Do you remember me talking, last fall, about running into a "stalker" at the outdoor mall in Tucson?  Well Jeannette is officially a friend now.  We even talked on the phone.  She was so kind and lent us this Fisher Price Rocker after seeing it on my Elliott Pinterest board.  He doesn't love it, but we're working on getting him in here for naps.  Even like 30 minutes twice a week would be good.  I seriously don't mind holding him, but I do have another kid to take care of and Elliott doesn't always sleep in the moby wrap or belle carrier.
Last night we let Spencer take a bath in the dark with glo-sticks.  Occupied him for a good hour.
It was 80 degrees today.  We went for a walk in the afternoon and were so warm after we got back that I let Elliott wear a short sleeve onesie and nothing else.
It was warm enough for Spencer to play outside in the water.  I let him turn on the hose and do whatever he wanted with it.  He had the time of his life.

Do you know who this is?  It's actually Spencer at almost the exact same age Elliott is right now.  They might be a couple of days different.  Totally coincidentally I pulled this same onesie out of the drawer for him to wear tonight.  Spencer was 5 pounds 15 ounces when he was born, went down to 5 pound 10 ounces and then was 7 pounds 13 ounces at 2 months.  Elliott was 6 pounds 13 ounces at birth, went down to 6 pounds 2 ounces and, with his liver issues, was also 7 pounds 13 ounces at 2 months.  I find it very interesting that they were both preemies and the exact same size at 2 months.
Anyway, I tried to take a comparison photo, but Elliott would have none of it.  I also find it interesting that in these photos colicky Spencer is not crying and not colicky Elliott is.  In his defense, he's just as tired as I am right now.  And just so you know, we've decided that while Elliott is not colicky and doesn't cry as much he is just as high needs (not even counting his health issues) as Spencer was.

I have to make it through tomorrow and then Michael will be home for the weekend and I'll try to do the post about current health developments.

Sunday, February 19, 2012

Tid Bits

The granola bars we made are delicious.  We found milk and white chocolate striped chocolate chips in the bulk bins at Sprouts.  I think the stripyness of the chips enhances the deliciousness of the entire bar.  The recipe for these came from the blog of a woman who has 7 sons, homeschools all of them and is pregnant with her 8th baby.  Reading about her makes me want to cry and then slap someone.  I told Michael this week that I felt like I was ruining all of our lives. I only have 2 sons and I'm barely managing to keep us afloat.
Spencer has started lying and being openly defiant.  He's not a very good liar at all.  Example- he was rubbing Elliott's face with a plastic hanger.  I told him to stop it.  He told me he wasn't doing it.  Riiiiiiiight.  He is very good at being defiant.  We had a 20 minute argument about him wiping up some milk he spilled.  He gave me 57 excuses why it was not his fault and he shouldn't have to do it.  I know that this is all stemming from 1) having a new baby in the house and 2) having very stressed out parents of the baby (because he's a baby and because he's had so many medical issues) All of this has led to some rough days and quite a few meltdowns.  As a way to try to deal with the meltdown part we made a calm down jar.  You shake it and calm down while you watch the glitter fall to the bottom.

Wouldn't you know it......there have been no meltdowns this week.  Lying and defiance, yes, but melting down, no.
I may not be the birthing 8 kids and then homeschooling the bunch of them type, but I did help Spencer to make homemade Valentines for his class.
I think they were pretty cute.  I like that he didn't give candy too.
Spencer put these on the other day, proclaimed "I'm a real cowboy now" and ran around the kitchen yelling "giddyup little horsie" over and over.

I love these kids.

Spencer had his class picture taken last week.  This was his practice pose in his picture outfit.
When he got home from school after class pictures he put on his pajamas because he wanted to be comfy (he gets that from me), then added his halloween costume and a dolphin nose.
Then he ran around in circles for about 30 minutes.

We made slime using water, glue, food coloring and borax today.
Spencer got himself a little blue food coloring Hitler mustache. 
Now we have a bowl full of blue slime and we're not sure what to do with it. 
My parents spent the night on Saturday night. 
They brought Spencer some Mardi Gras stuff.  He's all ready for Fat Tuesday.  You'll have to ask him why he insists on adding the pig hat. 
And finally,

The look on Spencer's face when he came to the dinner table and saw this was PRICELESS.  Too bad I didn't think to have the camera ready.
He ate it leg by leg.  It was awesome. 
That's all.  Random tid bit post is done.