Friday, February 27, 2009

The ladies...

We are really blessed where we live that I have so many great friends! Back in December they wanted to throw me a shower, but really I just wanted to go out to dinner with the girls, so we did. It was so fun and refreshing that we have started to do it monthly. This last month we went bowling and it was so fun! It was bitter sweet because Mandy (far left in the picture below) was moving the next day to Hawaii, I know kinda hard to feel bad for her! She and I were pregnant at the same time and delivered a week apart and both had similar issues and she has 3 other boys that are close to ours so we loved to hang out with them! Plus our neighborhood is pretty tight, mostly because there is so few of us and we live in the middle of tumbleweeds! So it was very sad.I keep myself comforted knowing that I still have Pam!

Thursday, February 26, 2009


Davis has Hyperphe too!

So he will also be seeing the specialist on April 15th!

(It probably just means they will want to monitor him. Obviously there is not enough of the phe in his blood to cause brain damage, although John and I laughed a little and said maybe this will explain what happened when he hit the terrible twos! So it probably means nothing more than we are the luckiest people in the world that of all genetic disorders we carry the one you would want, and we got a mild form that wont really ever effect their life. At least they will have something interesting to contribute to their biology classes when they talk about genetics!)

Tuesday, February 24, 2009

6 weeks old

He is growing so fast! Hes not real fond of being on his tummy but we still try... Hes getting tired
Most of the time he just sucks on it to keep him happy
And this is the picture you usually dont see...

Monday, February 23, 2009

The verdict is in...

Beckhams eyes are going to be beautiful brown!!!
They still have blue on the outside but the light brown in the middle is starting to move outwards. His lashes are also starting to grow as well as the size of his chubby little legs...
our boys have the longest lashes ever and I love them!

Thursday, February 19, 2009

Mr Independent!

Caleb has really grown in leaps and bounds since Beckham has been born! Its been amazing to watch him and see myself start to trust him and treat him like he is growing up.

First off all he is so helpful and will help me get things when I'm feeding the baby or will help Davis get his shoes on or get a drink. Its been a life saver! He also loves to hold the baby....Its so nice to just have him hold him for me for a couple of minutes when I have to do something. Today he even helped me hold him at the restaurant while I got ready to nurse and then he handed him to me.

He also has started taking showers all by himself in the morning and getting himself completely dressed. Its wonderful to just tell him to go get ready and he knows how to do everything himself!Poor kid...its hard to feel all grown up when Mom sticks the camera in the shower...but hes a good sport!

He has learned how to call 911, John at work, our address and we are working on learning my phone number right now. He rides his bike without training wheels. He knows to check if something has peanuts in it before he eats anything not from Mom. He helps clear the table at night, sort the laundry, and all sorts of other chores around the house.

Most of all Ive learned I just have to trust him because he is much more capable that I sometimes give him credit for...or maybe there is a part of me that has been holding onto my baby. There just isn't much about him that's "my baby" anymore!

Tuesday, February 17, 2009

Total breakdown....

No, I am not having one (that I know of at least) we are going to talk about the total breakdown in communication with the state, my pediatrician, and everyone else involved in newborn screenings and PKU.

First of all they knew he had the hyperphe after the 2nd test but we were told he didn't. Then we were told that the test being sent back east (the bladder bag and heal prick) were to get a definitive answer for whether or not he has PKU but in reality its to test for some obscure form of PKU (I don't think my pediatricians assistant still gets this) because they already knew he has the hyperphe.

Finally after all of my pushing and insisting someone from the state call me directly, we find out about the hyperphe. We were told that since its not full PKU that needs a special diet, for now, that we don't get referred to a special Doctor. At the same time there is no one that I can ask my questions to so I just keep pounding the newborn screening people at the state with my questions. Its such a rare thing that there isn't much info on the Internet and they usually refer you to a specialist so pediatricians don't know much about it other than a definition. And my pediatrician just kept asking me if another Dr had called me yet.

Then about future care...First they told me we do two more blood tests, one in 4 weeks and one 2 weeks after that and then he never has to be tested again. Then they change and say just have him testing again sometime before 6 months. Then its two more times before 6 months. Then its get him tested basically when you feel like it! Not that they ever contacted me about the change they just told me something different every time I contacted them.

So after me hounding them with yet another e-mail this is part of the response I get back...

It's nice to see parents who really take the time to understand their child's newborn screening results and ask so many questions. Honestly, we have parents who can't even remember what their child has, nor do they follow through on appointments or treatment. We certainly don't have to worry about your family. Good job!

Don't hesitate to ask any further questions. I know April is a long time to wait for your appointment with Dr. Longo, so call me anytime.

Really a nice way to say YOU EMAIL US A LOT (which I do) But lets look at that last line apt with a Dr!?! Who is Dr Longo?

Apparently we have had this apt since he was two weeks old, they just forgot to tell us! Seriously though, I'm so grateful that we have this apt so I can finally get clear answers from someone who knows what they are talking about!

And last of all.... after 3 calls to my Pediatricians assistant I got Davis' protein and amino acids tested so we can confirm that he is either totally fine or if he actually has the hyperphe too. Poor John had to take him in to do the test because they had to draw blood from his arm and Davis can hold a grudge and I didn't want to be the one holding him down!

Monday, February 16, 2009


Every night Beckham has a little fussy time and the only thing that makes him happy is to take a bath. We loved our big bathtub before Beckham but now its the best! He just wants his head propped and then he just kicks around and smiles and talks to us. I mean he goes from crying to silent in seconds when he gets put in the water.
He must be our son!

Sunday, February 15, 2009

Happy Valentines Day!
We had a very nice (wish I could say quiet) dinner at home. Not many women get to eat with 4 good lookin' boys on Valentines but I was so lucky! We decorated the table all up and exchanged Valentines and it was so fun to see how much the kiddos enjoyed it.
John and I had a talk about how we want to teach our boys to be good dates and so these dinners are a really good chance to teach some etiquette...half way through we thought maybe in a few years it will be easier. We did make a point to eat on the nice china and I even went to DI and found cheap, but real, glasses for the boys to toast with. It was fun to watch Davis try to handle such a tall glass!
Hope your day was special too!
Lots of love from our home to yours!

Friday, February 13, 2009

Last night we put Baby Beckham to bed at 10:00
and he didnt wake up until....

5:00 am

I feel so good today!

Tuesday, February 10, 2009

4 weeks old!

I cant believe it!
We are all healthy, happy, and feeling good...not sure I thought this day would come but Im going to enjoy it while its here!

Sunday, February 8, 2009

My first photo shoot

Okay so I did my first photo shoot of my good friend Mandys sweet baby. It was so scary for me! I love to develop new talents but I prefer to do it where no one can see until I'm good at it. So this whole practicing photography makes me very uncomfortable. Some of the pictures turned out great and some of them...well I learned how NOT to take that shot.
These were some of my favorites....
Thanks Mandy for letting me experiment on you and many thanks to Kekoa who was perfect and slept the whole time and let me pose him however I wanted without waking up!

As uncomfortable as it is to practice I need lots more, so please let me know if you would be willing to let me practice on you! Its free and I will give you a disk of the pics I take.

I really want to do families, not just newborns!

Thursday, February 5, 2009

3rd PKU test results...updated


Okay so I just got off the phone with the geneticist and it IS official that he has PKU. I guess the second test did confirm it but the medical assistant didn't get it. The big test that they sent back east was to test for a special PKU mutation called Bioptrin (a very very rare mutation of PKU) which they automatically test all PKU patients for. That is what we wont hear back from for 4-6 weeks from when he was tested.

The great news is that he has a form of PKU called mild hyperphe. As of now that means that he does not need a special diet and that he could live a normal life without any special diet required. From what I understand the next year will kind of determine that. Here is what I found off of this site:

Treatment of Mild Hyperphe:
Blood levels and diet are monitored periodically to assure that the PHE level is maintained between 2-6 mg/dL. When your child begins solid foods, a blood test should be obtained by your child's primary care physician. As your child progresses to table foods, another blood test should be performed. If the blood PHE is great than 6 mg/dL, the child should be referred to a metabolic clinic.

So for now I'm just grateful that he has a mild form of a very livable genetic disorder, really we are counting our blessings that this is what we have to deal with. She also said we are lucky that he is boy because there are complications with girls even with mild hyperphe and pregnancy that can cause birth defects to the baby because of the protein that is not being metabolized. So all around we have been blessed.

For all of John and my brothers and sisters just know that we are both carriers of this so there is a chance that you also are a carrier and can pass that to your kiddos too. You would have to have married someone who is also a carrier to produce a child with PKU but its something that if your children marry someone who is a carrier and they are a carrier they can have children with PKU. There is info on that site above that explains how the genetics work.

Oh and just to let you know how rare it is, on the site they gave me as a reference guide there were almost 45000 babies tested in Utah in 1 year and 9 had it. So that's pretty rare and I will let Mark work on the % that is and report because my mind is fried from trying to read all this medical jargon!

Just one more thing...I called AZ because Davis also tested positive and then his second test was negative BUT with us knowing that we are both carriers I wanted his numbers. Beckham has so far been under 4 (good). Davis' first test came back at 3.3, 3 is too high. His second test came back at 2.2 so they called it "normal." What I'm trying to figure out is could he also have mild hyperphe since it seems unlikely if this is so "rare" that he would be a false positive. I'm waiting to hear back from the geneticist about what they think.

Tuesday, February 3, 2009

3 weeks old!

Here is what we have learned in the past 3 weeks about you...
  • You have huge hands and grew out of your mittens before you have grown out of any clothes
  • You were never small enough to wear the preemie clothes that we have but fit your newborn clothes perfectly
  • You have a small oval birthmark under your left ear
  • You have a sixth sense for when Mommy is about to drift off to sleep and love to fill your diaper right about then
  • You established a first with Dr Marsden when you emptied your bowels right in the middle of your circumcision. Other than that you are very good at not going potty during diaper changes...thank you :)
  • You have expensive taste in diapers and anything else gives you a rash
  • Your umbilical cord went really deep into your belly button and it took 2 1/2 weeks for it to fall off
  • You LOVE to take baths and you just go still and quiet in the water. Last night you sat in the bath with Daddy for over a half hour
  • You eat very sloooow
  • You don't demand a lot but when you do want something you want it 5 minutes ago and don't have any patience for things like heating up your bottle
  • You love your pacifier and your swing
  • You love to be swaddled, especially in your swaddler that gets you really tight, you are not content with just blanket swaddling
  • You sleep a lot even for a newborn
  • You are perfect in every way
  • Our family would be incomplete without you
  • You are already growing up way to fast
Still no PKU results but he looks like he is past the bronchiolitis part of RSV and is no longer retracting...hopefully no asthma in your future (my fingers are crossed)!

Sunday, February 1, 2009

Hangin' Tough

Our boy is fighting and hes winning!
So far so good....We have been taking him in twice a day to get his nose and throat sucked out, which he hates! It helps keeps him clear and Friday night the stuff they were sucking out started to get really thick. On Saturday because of the thickness the respiratory therapist said she thought at that point that we were going through the worst of it. Last night he didn't even really seem like he needed to go in but we took him anyway just to stay on top of things and not lose any ground. They also had lowered his rating to a 1 because he was still retracting but he was doing better. His appetite is back up and hes eating like crazy and starting to be more awake. Which is fun for us but I think for him it makes him realize that he doesn't feel very good so hes more fussy, not that we blame him. He still has a cough that sounds like sandpaper in his lungs poor guy. John just called and when he went in this morning he was a 0!!! Yea!

I'm trying not to get my hopes to high since we have had it explained that with RSV you think you are over the worst of it and getting better and then WHAM it will pick up speed again. This is actually where Davis is and hes been having a horrible bout with it again. We are surviving and all staying home today just to make sure we aren't bringing any other nasty little virus' into share with Beckham until we feel this is under control. Caleb and Davis are going stir crazy...perhaps a ride in Daddy's truck will perk them up!
All bundled up to go the hospital
Updated: Well, I was told I shouldn't get my hopes up (but secretly I did)...tonight for the first time when I listened to him he was wheezing so John is taking him down to the hospital as I type.His nose sounds pretty clear but his little cough has gotten worse. Argh!

Later: After they sucked him out the wheezing stopped Yea! As long as we can keep the bronchiolitis at bay we will be okay :) This is when you don't want to have a family history of asthma, but we are too late there!

Pray, Pray, Pray