20 weeks and its a.....

BOY!! All I can do is laugh at having 3 boys, 2 of which are a year apart... my house is going to be crazy! We are excited. Everything looked great. He is weighing in at a whooping 12oz and wiggling around like crazy. I haven't felt him much because the placenta is posterier(?). Dr said I should start to really feel him in 2-4 weeks.

Poor birds

We have these birds that built a nest in this bamboo shade right out our back door. It has been pretty fun to watch them build the nest and then to watch them bring food back and forth to the baby(ies).... Until today.

I knew this would happen, but I thought maybe they would escape... THE DOGS.

Garrett looked out the window today and saw the dogs chasing something and he yelled for me to come. I looked out and saw the dogs chasing something and two birds divebombing the dogs. I got the dogs inside but not without a casualty. One of the babies is right outside the back door, presumably dead. It hasn't moved at all. I am just leaving it alone for now, hoping that it is just scared--- but I re
ally don't think so. The poor mama and daddy bird are flying around everywhere chirping, looking for their baby. It is the circle of life, I guess- but man, I am sad for the birds.

UPDATE: The baby bird is alive and hopping around the back yard. I wonder how long it will take to learn to fly bc I am trying to keep the dogs from getting it.

18 weeks

Well last week was 18 weeks and I am feeling fine. I think I have felt the baby move some. In fact I know I felt it last night about 3 am as I was laying there waiting for Davis to wake up. This one is not as active as Davis was, I was already feeling Davis from the outside at this point. Jason says that is good, maybe it will have Garrett's personality. Davis has definitly been a challenge- good thing he is so cute!!

Things are going ok on the PKU front. His level was good this week, so we are keeping everything the same. I have started to try to introduce his formula in a sippy cup- he isn't so sure about it, mostly it just pisses him off. I think it comes out too fast. I am going to buy one of the straw ones today to see if he likes that any better. I think that is what I started Garrett out on. Katie, the dietician, says the earlier we get him on sippy cups of formula the better and easier it will be to get him off the bottle. I want him off the bottle by the time the baby comes, for sure!

I had a pretty sad day on Sunday thinking about PKU. On the message board that I read, I read some threads about what others are feeding their babies. It made me sad to think that Davis will never have any of that stuff and his whole life is going to be full of measuring out foods and reading labels and restriction. Then we went to 7-11 and the cashier gave my 5 year old a cookie. It made me really sad to think that we would have had to tell Davis no- he can't have that cookie. It sucks. Generally I try to have a good attitude about it because I KNOW things could be alot worse, but Sunday was just hard. I try to think of all the things he CAN have and how healthy he will be- but I was just down on Sun. I am sure I will have those days throughout his life. I can't dwell on the "can't haves", I need to focus on how LUCKY we are that he was diagnosed properly and how far the diet has come. I read an article that those that were not diagnosed (before newborn screening) were mentally retarded by a year of age... He is almost 8 months old, so he would be showing signs of brain damage already, if he hadn't been diagnosed. When you look at him and watch him interact with Garrett it is had to believe that things could be so different! Thank goodness for newborn screening!

PHE is good this week

Davis' phe level was great this week. It was 2.0 (range is 2-6) so that means he is tolarating the baby food well. Last week he was getting 8 exchanges. This week we have bumped it up to 10 exchanges, which seems like a lot. He is getting 2 TBS of rice cereal and a stage 2 fruit for breakfast, a stage 2 fruit and veggie for lunch, and another stage 2 fruit and veggie for dinner. And he HAS to drink 24 oz of formula. He is turning into quite the chunk! His little thigh are getting little rolls in them. He is sitting and rolling like a champ. Not too close to crawling. He seems like he wants to get places, but can't figure out how to do it. I am not pushing it either because one he starts crawling, I have to figure out something do to do with all of Garrett' toys that have a million little choking hazards to them (legos...). He has gotten his two bottom teeth. Teething wasn't so bad, but he is always a bit fussy, so he wasn't any fussier than usual!

16 weeks

Not much going on in the pregnancy world-waiting on movement.
Went to the Dr last week. Up 2 lbs. Everything else looked good. Set up sonogram for June 8. yay!

Davis is good, eating some fruits and veggie baby food. He is sleeping pretty well. He gets up around 5am for a bottle and then up for the day around 7.

10 weeks

Here is the belly picture from 10 weeks. I think it is getting bigger, but not because of the baby. Because I can' quit eating!!! And all I eat is bready type stuff. I am feeling kinda nauseaus this morning, not bad at all-just a tiny bit.

I ordered a doppler this weekend. I guess I will get it later in the week. I wasn't going to do it, although I did it with both of my other pregnancies. But my next Dr appt. is still three weeks away, so I just need to make sure the little peanut is ok.

I am tired. Davis is sleeping horribly therefore making me very tired during the day.
We went to lunch with a friend of mine that has babies that are 14 months apart- all I have to say about it is that I am going to be VERY busy...

So can he have chicken???

I get the strangest responses when I tell people that Davis has PKU and basically that means he can't have protein. I guess I am a fairly health consious person and I really put some thought into what I eat, but it just amazes me that people don't know what consitutes protein.

Can he have chicken, soy, how about salmon, nuts, fish? What about milk, cheese, yogurt?? Oh he can't have milk, can he have goat's milk??

It is just crazy to me that people don't know that all of these things are considered protein.

I understand people are shocked when I say he can't have regular bread or pasta because to me those things aren't protein, but flour has alot of phe in it- so he can't have anything with flour either.

It is just surprising how little people actually know about the foods that they are consuming.

Happy St. Patricks Day and Happy 5 months

This was taken a few days after he turned 5 months, but he was grouchy on that day so I didn't get a good shot of him.

Things he can do: (or has stopped doing)

Has stopped sleeping through the night -sigh-
Can stand with support
Plays with his feet all the time
Is having fewer witching hour evenings
Has started rice cereal, although it is me poking it in his mouth and washing it down with formula-he has yet to enjoy it. Maybe when we start real food he will enjoy it more
When on his tummy he scrunches up his legs and pushes off, but just can't figure out how to make the top half of him move
He is getting more and more fun every day

Eight Week Belly

Here is the eight week belly shot.
No new symptoms to report, in fact I am pretty much symptom free.
Next Dr. appt is April 17. We will do the nuchal screening. Hopefully at that sono they will be able to tell if its a boy or girl.
My cousin is due one month ahead of me, so it would be fun if they were the same sex-but who knows, I guess its a 50/50 chance.

It's all good!!

We have one baby and one strong heartbeat!! Yay

Weight is 133, so I am 2 lbs lighter than at this point with Davis. This makes me feel great because I have not been running and eating pretty badly since I found out I was pregnant. Had I continued on like I was doing (not pregnant, of course) I would probably be in the 120's, which is my goal after this little one is born.

Heart rate was 140, which is about the same as Davis at this point.

Due date is October 26th. We will do a C-section either one week early if no previa or two weeks early if I have previa again.

We talked extensivly about banking the cord blood, which we did not do with either Davis or Garrett. But we will with this one. We talked about the possiblity of them (who is them??) finding a cure for PKU through stem cells. It is a no-brainer for us to bank it now. Who knows what the future holds as far as that goes, but we will be prepared should anything ever come up. I feel kinda guilty now for not banking the others. It really makes me wonder if the reason that this one was conceived so easily is because eventually we will be able to use the cord blood to "cure" Davis. Whew-heavy thought!!! I really pray that this can happen!

Nervous about tomorrow

I have my first Dr. appt in 23 hours from now. I am so nervous that something is going to be wrong. I do not feel pregnant in any way. Jason assured me that I felt the exact same way with the other two, but I just don't know. At this point with Davis I had already had two sonograms and bloodwork, so I knew I was pregnant and it had a heartbeat. With Garrett I think I was too naive to think something could be wrong. With this one I know so much more and have read so many stories about empty sacs, fetus' that have stopped growing, etc... that it really makes me nervous. I really, really want this baby and hope that it is growing like it should be.

I guess we will see tomorrow at 10am-yikes!!!

Into the food journey

Well I got word yesterday from Davis' dietician that we can start rice cereal. His Phe level was a bit low again (1.6) so instead of adjusting the formula recipe, she decided it was time to introduce cereal. He is to have 2 Tbs. of rice cereal a day in addition to his formula. We will do that for two weeks as his dietician is on vacation next week. In two weeks we will check his phe and, hopefully, add other foods. Two Tbs. of rice cereal is 2 exchanges. So he is having two exchanges at this point,the more exchanges he can tolerate the better. But we won't know how much he can tolerate until he is eating table food,so probably after a yr old. Unfortunatly that number doesn't really change much as they age,so what he is able to eat at two is the same amount he will be able to eat at twenty-two.

He didn't really seem to like the cereal- he just looked at me like "what is this?" and spit it back out. So we must practice!!!

Anyway I guess we are about to embark on the crazy world of feeding a PKU child. I think it is pretty much the same as a non-pku as far as baby foods go, just no meat baby food. Although I will have to start counting exchanges and keeping count of what he eats. From what I have heard Gerber is great about supplying the phe amounts in all of their foods- so that is what we will feed him only.

I have mixed feelings about starting food. I am excited, yet scared. Scared because this is when he becomes "special". We have already started adjusting our diets a bit. Garrett doesn't get chocolate chip pancakes anymore, instead he gets strawberry or blueberry pancakes. No more hot fudge sundaes at McDonalds-we willl come home and eat a popsicle or get a slurpee instead. We are TRYING to eat more fruits and veggies. This will be a learning experience for us all for sure!!

6 week belly picture and symptoms check

Here is my 6 wk belly picture. Remember I am only 4.5 months post partum, so I still have a belly from that- LOL.

Symptoms:
Extreme thirst therefore excessive peeing
Insomnia at night, tired during the day
Very vivid dreams
Boobs hurt (maybe??)-they probably hurt from me pushing on them to see if they hurt

That is it-kinda freaks me out that I am not really feeling ANYTHING, I hope everything is ok with the little bean!

Insomnia

I.
Can't.
Sleep!!!

It is horrible, I am up for hours during the night. I get up and watch TV 1-2 hours each and every night. I haven't been this tired since Davis was a little bitty newborn. I can't nap in the day either because I have two children I need to take care of and because if I nap during the day I think that will make sleep even more elusive.

I am feeling nervous about this pregnancy because I have no symptoms really. I mean I do have insomnia and I am tired, but that is it. My boobs aren't even sore. I keep poking them but they just aren't sore. My first Dr. appt isn't until Mar. 13. I am just a normal pregnant person with this one, so I don't get to have early sonograms like last time with the RE.

My friend that just did IVF found out she is having twins- yay!! I am so excited for her! We are due within days of each other, although I am sure hers will come early since there are two of them. It is going to be so fun to go through pregnancy with her. We have known each other since 8th grade. Of course this is her first pregnancy so I want it all to be about her. I will just give advice or comments when asked.

Jason is hunting this weekend so it is me and the boys by ourselves. I keep trying to imagine when he goes hunting next year I will have three little ones at home with me-- whew, makes me tired just thinking about it. But I can't wait!!! I am getting soooooo excited about this pregnancy

Told the parents

They were shocked to say the least, but excited! They could not understand how it took so long and we went through so much with the other two and this one just happened.

I am waiting to tell friends until after the first sonogram-just in case.

But I am really getting excited! Life is going to be so crazy for the first year or so I am sure, but we will get through it. All I can think about is how much fun we are going to have.

I secretly wanted this to happen, never in a million years did I think that it would but I really wanted an "oops" third child.

I am beat today- so tired and sooooo thirsty. I have probably had a gallon of water today.

Davis' phe was low today for the second week in a row. It was 0.9, so we have changed the recipe-- less of the PKU formula so maybe it will be a little easier on his tummy.

Well- good night- it is 9pm and I am tired so I am going to bed...

I am scared to tell my Mom

I feel like I am 15 and unmarried and knocked up, I am really nervous to tell my Mom.
I mean it is silly to feel this way. I am happily married, can take care of 3 children financially, have a house (although we probably need to move to a 4brm house)--but still I can't help it- I feel nervous.

I am sure they are going to wonder why in the world we would let this happen having just had a child with PKU. But here is the way I look at it... first there is a one in four chance this child will have PKU and a 3 in 4 chance it WILL NOT. So odds are in our favor there- but if he/she does have PKU then that will give Davis someone to commiserate with. I have read lots of stories that adults with PKU wished they had a sibling with it as well to go through it with.

I will feel bad for this child if it has PKU, but I will feel bad for Davis if it doesn't. He will be the only one with the different diet. I guess there is no sense of worrying about it now- at this point it either has it or it doesn't.

Still in SHOCK! I feel hungover today. I am going to make myself go for a walk when Davis wakes up. Literally I could sit on the couch all day. I didn't sleep well last night though. I went to bed at 10pm, woke up-wide awake at 11:30. Got up and watched The Lakehouse until about 1:30am. Fell asleep around 2am. Davis woke up at 3am, went in and re-swaddled him and stuck his paci in his mouth. Then I couldn't fall back asleep. I think I finally went back to sleep around 4:30am, then up at 7am-Whew-
Guess I better get used to getting up in the night again. Davis started sleeping through the night about 8-9 weeks, so hopefully this little one will do the same...

February 19- Deja Vu

So last year on February 19, our 8th wedding anniversary, we tested positive with Davis.

Today on February 19, our 9th wedding anniversary, we TESTED POSITIVE WITH OUR THIRD CHILD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Holy Shit is all I can say.

Eighteen months to get pregnant with Garrett.
Two years plus IVF to get pregnant with Davis.
One month to get pregnant with the third.

Were we trying? Not really- but not preventing- who would have thought after all we had been through to have our two boys that we would get pregnant so easily.

Davis and the baby will be ONE year apart. I am due October 28. I was due on Oct 31 with Davis. I am living a deja vu!!!

Four Months Old

Well Davis turned four months yesterday (will post picture as soon as I download of camera). What a crazy four months it has been...

Things he can do:
Roll from stomach to back
Giggle
Suck on hands
Grab and hold on to things
Sleeps through the night
Can bring the house down with his screams
Track you with his eyes all the way across the house

I swear I think he is getting teeth. Everyone thinks I am crazy, but when he is in one of his full on screaming fits you can see two little slits on the bottom gum. I bet within a month he is cutting teeth... Maybe that explains the grouchiness-- LOL

We went to the Ped today. He weighed 14lbs 10oz (50%) and was 25 3/4 inches (75%)and he has a big noggin-(89%). We will not be starting food yet. That will probably be next month. The PKU doctor is in charge of his food and food schedule and we go to clinic next month so I am assuming that is when they will give us the go ahead.

I am participating in an event called Texas Tough that benefits Children's Hospital and specifically the PKU dept. It is a run, bike and swim event held on different days throughout the year. The run (5K) is coming up in March. I have already raised $2500 for the PKU dept. Team PKU's goal is $50,000. I feel so lucky to be part of such a great group!
It is nice to know that someone cares about your child! I met a girl, Sarah, down at the lab when he was first diagnosed. Her daughter is a couple of months older and also has PKU. She and her husband have hit the ground running with the diagnosis. They organized Team PKU for the 2008 Texas Tough bike event and raised $17,000. They have also formed the PKU Foundation. I feel very lucky to have met them. I think we will be close friends over the years to come

Whew-what a difference a week makes

Phe level this week.... 4.9, so within range-- yippee!
It made me so excited to hear this after having two weeks of high level! And to top it off it was a beautiful day here (upper 60's) and sunny. What a great day It is funny how that little number can affect my whole outlook-this week it is good.

Tonight I am going out with some friends that I have met through Garrett's school. Margaritas are always fun :) and talking with new friends is too.

My friend, Suzanna, is doing her transfer today- so thoughts are with her! I am as anxious for her to get pregnant as I was myself. It is funny because my transfer was Feb. 13 last year so her due date will be very near Davis' birthday since he was born 2.5 weeks early. Oh- I so hope this is it for her!!!

I feel lucky

I feel so lucky to have PKU in this day and age. I just read an article that said they started testing people in mental institutions in the 1960's when they came up with the test for PKU and over half of all people in institutions had PKU.
Can you imagine???

How lucky are we that we live in a day that my son's PKU was diagnosed 9 days after birth? Of course it isn't the greatest diagnosis-- but still it was diagnosed.
Without the PKU test we would be facing a life with a very mentally disabled child.
It is so manageable by diet that he will grow up to be fine.

I have my bad days for sure--- but mostly I am so thankful that we know what we are up against and all it takes is a dietary change.

Thanks be to God for the newborn screening!!!

I have stumbled upon this blog from another that I read.
My heart is breaking for this family. Here I am worried about what my child will eat and this family is dealing with childhood cancer and most likely the death of their daughter.. My thoughts and prayers are with them. Please say a prayer for them and their sweet daughter

How long is "a while"?

Davis' phe level was high again this week-13.6, so we are adjusting the formula recipe to bring it down.

But my question is this.... how long is a "while"? That is the answer I get when I ask about brain damage. His level has to be high for a while for that to happen. But noone can seem to tell me how long that is. I feel certain it is longer than two weeks (which is how long it has been too high) but how much longer is it.

I know they can't tell me an exact timeframe and I am sure it differs from person to person but I just wish I had something more definite. Something to make me feel like I am not causing my child brain damage...sigh...

"Goodlooking eyes and magic ears"

Garrett is so funny. He and Jason were on a walk yesterday and they were talking about the trolls that live in the creek by our house. Garrett said "oh I see them with my good-looking eyes". Laughing Jason asked him if he meant that his eyes were pretty and Garrett said "no-I can see good out of them, they are good looking eyes".

Then this morning I asked him if he heard Davis cry in the middle of the night. He told me that he didn't because he has magic ears and they turn themselves off in the night so Davis doesn't wake him up. Hmmm Jason must have the same magic ears because he doesn't hear Davis either...

What a sweet big bro.

Garrett is the sweetest. When I was pregnant with him I went to one of those paint your own pottery places and painted him an airplane piggy bank. Well last week he told me that he wanted to make one for Davis. So I searched on the internet and found one near our house. We went last week and he painted a robot piggy bank for his little brother. We picked it up yesterday and he brought some change from his piggy bank to put in Davis'. What a sweetie!!! I just love him to pieces

The witching hour

This sums up what the evening hours look like around our house. Davis gets a bit fussy in the evenings. I have started putting him down for a nap around 5pm, hoping he will sleep through it- sometimes it works and sometimes not...

He rolled over!!!

Davis rolled over today during tummy time. Yay!! He also hit his head on the hard plastic side of his little mat, so he cried too. It is ironic that he rolled over today because we quit swaddling him last night because he kept getting his little leg out and because he is getting to the age where he should start rolling and today he did.

His phe level was high this week- 13.4, but the dietitian thinks it is because I fed him a bottle while we were waiting for blood draw-so I am to continue on the same recipe and we will see next week. He is not at all fussy like he was a few weeks ago when it was 15, so I think he most definitely had a little virus or something.

On another note, Garrett has learned how to dial my phone number. He spent the night at Mimi's last night and he has called me about 100 times. He is so funny because he gets mad if I answer it-he just wants to leave messages. This morning I got a message that said "Mommy- I wonder what Davis and Daddy are doing?? I hope Daddy doesn't have to go to work because I want to play with him today." How sweet is that! Too bad Daddy had to go to work.

Hope for PKU

I just received an article today that has given me hope in dealing with this...

There is a drug about to undergo clinical trials that has worked in mice. It is an injection and it made their Phe levels totally normal.

I am sure it is a long way off from getting FDA approved-- but just to know someone out there is working on something that may help my child is so encouraging. It makes me really thankful for all of the people that I don't even know that are working on something that will affect my family. Wow!

We went to a fundraiser dinner tonight for Garrett's school and a local hamburger joint. What will Davis eat there in a few years... nothing- oh maybe a fruit cup or applesauce. Not fair! Why him?? Why can't I be the one affected. He is so innocent and has no idea what is in store for him. Of course I will try to make his diet as "normal" as possible- but how normal can it be? It makes me so sad to think about it, especially when I see him smiling. He is so happy now. I really dread starting food. It is funny-with Garrett I couldn't wait to start rice cereal and baby food. I am dreading starting food with Davis. To me it marks the beginning of a whole different life- for him, for me, for all of us.

I will do whatever I can for that little boy. I will make his childhood as normal as can be. I will cook low protein foods and buy whatever I can so that he can enjoy food like the rest of us.

But for now, I hold onto HOPE that by the time he is 5 or 10 yrs old there will be something to allow him to eat a normal diet and he will never remember being any different.

I'm back

WOW-- it has been a while since my last post. The pregnancy went along pretty uneventful, except I had placenta previa. C-Sections are required when there is a previa, obviously, because the placenta is blocking the escape hatch. The C-section was pretty easy, recovery was easy and breast-feeding was just starting to click.

Davis Merrill W. was born on October 13, 2008 at 7:37am. He was 6 lbs 7 oz and 18 inches long. He is absolutely adorable!



Then... we got the call...

Our pediatricians office called to say that Davis had had an abnormal result on his newborn screening and that we needed to take him down to Children's Hospital and have it redone. His phenylalanine level was high, possibly indicating PKU. I had heard of PKU and new a little about it. I knew enough about it that I knew it was not good. I called my husband in tears, who was working an hour and half away, and he decided to come home immediately. I was at my Mom's house- so me, Davis, my Mom and Garrett headed down to Children's for the diagnosis that would change our lives!

It was confirmed the next day that he did have PKU.

What is PKU??? His body lacks an enzyme that is responsible for converting Phenylalanine (Phe)into Tyrosine. When high levels of Phe build up in the body, it becomes toxic to the brain-causing brain damage and mental retardation, among other things. Phenylalanine is found mostly in foods containing high amounts of protein. The Phe levels can be controlled by diet and he can maintain a normal life by following a very strict diet. The diet consists of a formula that he will have to drink for the rest of his life. This provides all of the nutrients and vitamins and calories that he can't get from food. His diet will consist of mainly fruits and vegetables. He will never have any protein (animal or plant) and starches may be eaten in moderation. Imagine a child going through life with no chicken nuggets, pizza, ice cream, corn dog, etc...

It really sucks- I know it could be worse- but it is pretty bad. It is something that he will have to deal with his whole life. I really worry about how he will be treated in Jr. High when kids are so cruel. And in college when he can't drink beer. And at birthday parties when he can't eat pizza at Chuck E Cheese or have cake and ice cream. And when he goes over to friends' houses to play and he has to bring his own food. I still cry when I think about those things and how different his childhood will be due to his diet.

We have to go down to Children's weekly for blood draws to make sure his Phe level is between 2-6. Over 6 is too high and could cause brain damage, below 2 is too low and could cause him not to grow. This week we were at .7- so we have changed his formula recipe to get it up. Two weeks ago it was 15 and I freaked out! Of course the level has to be high for a period of time to cause brain damage, but that is all I could think about.
Anyway when we go down to Children's I see kiddos that are worse off than him. It makes me feel bad to be sad about his diagnosis because it could be worse. I know that. But still no one wants something to be wrong with their child, no one wants their child to be different.

So that is where we are now- dealing with PKU. This blog will probably mostly focus on the dealings of PKU and the diet.