Genetic Update

We feel a lot better about Giuliana's prognosis after today's appointment. We found out that the genetic test that we've been waiting for took a close look at Chromosome 11, which is where Beckwith-Wiedemann Syndrome (BWS) appears. Children with Beckwith-Wiedemann Syndrom have a higher risk of getting cancer. They are prone to cancer in their abdomen. Joe and I are happy to report that BWS is not present for Giuliana on Chromosome 11! This just means that it is not in her genes, and they are going to draw blood (a methelation screening) to look and see if it is present in her DNA.

Giuliana does have characteristics for a clinical diagnosis of BWS. She has Macroglossia (a large tongue) which is the only major characteristic that SHE has (there are other major characteristics, and luckily if she's not showing signs of them now, they will not develop later), along with stork bites on her forehead and the back of her neck, and creases in her ear. Joe and I forgot to mention it to the doctor, but we believe she also has an umbilical hernia. The doctor said that many BWS children where BWS appears in their chromosomes, have cognitive development delays and she does not see Giuliana having and delays. So she shouldn't have any problems processing information, learning language etc.

In addition to the methelation screening, she orderd blood to be drawn to check Giuliana's Alpha-fetoprotein (AFP) levels. She will have to have her blood drawn for AFP levels every 6 weeks until she is at least 3-4 years old. In a few months they will perform another abdominal scan (most likely an ultrasound) to check her organs for cancer. She will have this test done every 3 months until she is 8 years old. While the doctor cannot predict the future, she feels that with these tests Giuliana's prognosis is very good.

The state also provides a program called Early Intervention. This is a family-centered service to assist families to help their children reach their fullest potential. We have an evaluation scheduled in 2 weeks where our Service Coordinator will come out to our house with an Occupational Therapist, Physical Therapist, Speech Therapist, and Developmental Therapist to see if Giuliana is eligible for this program.

Joe and I have been heavily researching Beckwith-Wiedemann Syndrome online over the past 7 weeks to educate ourselves so we know about our daughter's syndrome, and so we know what questions to ask the doctors. If you would like to read more about Beckwith-Wiedemann Syndrome, I have put some links below.

www.beckwith-wiedemannsyndrome.org

www.cancer.net/patient/Cancer+Types/Beckwith-Wiedemann+Syndrome

www.bws-support.org.uk/index.html

On another note, Giuliana has begun to smile regularly! Below are a few pictures and a short video. Also, Gunnar had his first baseball game this weekend and his team won! Yay Nunnar as Giovanna would say! He played right field, left field, and pitched for 2 innings.

The Girls

We have SMILES!

Smiles and babbles

ENT Doctor Update

Today Giuliana saw the Ear, Nose & Throat doctor. We really don't have any new information. 90% of our questions were answered with, "We'll just have to see how she does as she grows." He did tell us that on the spectrum of enlarged tongues, that hers is moderately large. It's not the largest tongue, nor is it the mildest. He was able to see the back of her throat which is a good thing and it appears that her tongue is only large towards the front. However, he did recommend that we get a machine called a Home Pulse Oximeter to monitor her breathing and oxygen levels.

I was upset the car ride home because yet again, we pretty much left the doctor's office with little more information than we came in with. As I thought about it more, it's a good thing. If all he wants is for us to monitor her oxygen levels and come back in 6 weeks, then she must be doing pretty well, right? So in a twisted sense, it was a good appointment!

Over the weekend we celebrated the family March, April, May, and June birthdays. Below is our first family of 5 picture! Since Saturday, Giovanna has been singing her version of "Happy Birthday." Below is a video, if you can't hear, she's singing "Birthday you."

When I get ready in the mornings, Giovanna likes to participate in my routine. She uses a cotton ball to "remove her eye makeup," then she brushes her hair, and she loves the blowdryer. Below is a funny video of our morning blowdrying.

The Lees 2010

Awe, sisters!

Blowdryer

Birthday you!

Sooooo Big!

Last weekend we celebrated Grandma Annie's 70th birthday. The family got together and went to dinner at Calo (mmmmmm) and then back over to Laura & Jerry's for cake & beer! This weekend is the big March, April, May, June birthday celebration!

Today Giuliana had her 1 month checkup, no shots! Overall she is doing very well weighing in at 10 lbs .08 oz, 21 1/2" long, and her head measuring 14 3/4" (all measuring in 50th percentile). She has started cooing and is very squirmy! It's amazing how strong she is. She will squeeze my finger while she eats, she continues to scooch over the boppy pillow, and when I hold her while sitting in the rocker, she climbs up my chest almost over my head! Unfortunately we don't have any test results yet for the genetic testing. We are scheduled to take her to the ENT doctor on Wednesday, and the following week we take her to the pediatric genetics doctor. It looks like we have a long road with a mountain ahead of us to conquer. Joe and I continue to pray for her health and enjoy Giuliana every moment we can.

Grandma Annie and the grandchildren
Grandma Annie made this M&M jacket for Gunnar

when he was Giovanna's age, and it has been passed on!

Giovanna loves M&Ms!

I like this picture of Giuliana on the changing table


Giuliana sitting on the boppy

Maynos!

Giovanna absolutely loves tomatoes, or as she calls them, maynos! The other day, Joe took her to Jewel because we needed tomatoes for our taco dinner. Joe turned around and sure enough, there was Giovanna chomping away. The tomatoes are right at her level and she grabbed one and took a bite like eating an apple! Joe went over and talked to the produce guy to explain what happened. The produce guy laughed and threw the bitten tomato in the waste pile!

Another mayno story: the other day Joe was making pork towers for dinner which also requires a tomato. Again he went to Jewel (this time he left Giovanna at home with me) to get a tomato. I was in the shower when he came home. He set the grocery bags on the floor while he ran downstairs to take the pork tenderloin out of the freezer. By the time he got back upstairs, there was Giovanna chomping away on the only tomato! He ended up cutting the whole tomato up for her to eat and of course, he had to go back to Jewel for another tomato. He bought two this time!


Giuliana update: Giuliana is doing well. She's our little piggy piggy, as we have now upped her bottles to 4 oz. and she continues to sleep well for us at night. We got the test results back for her Thyroid, and those came back normal. We're still waiting on the genetic tests. I called this morning, but the doctor did not return my call. It's very frustrating to sit and wait. Below are some more pictures for you to enjoy.

Giuliana on the boppy

Giuliana on the recliner

Giovanna eating her mayno

We Like This Picture

I forgot to add this picture to last night's post. I think it's a good straight on picture of Giuliana that my sister took.

Are They Twins?

I found the pacifier picture of Giovanna, and wanted to show the two of them next to each other! Whoa right?!?! We got a digital frame, and as I was uploading pictures to the frame, I was shocked at Giovanna's infant pictures and can't believe how much the girls look alike.

Giovanna

Giuliana

Fabulous Big Brother & Big Sister!

Gunnar has finally held Giuliana! This year was our Easter, and things were a bit hectic around the house, so Gunnar helped us out by holding Giuliana while Joe and I were tending to other matters! Gunnar has been great. He is so sweet and genuinly concerned about his little sister (although he looks a bit scared holding her in the picture below!!!). Also, tonight, Giuliana was having a bit of a meltdown, and I was trying to put Giovanna down for a nap. Giovanna kept getting out of bed, so while I was trying to calm Giuliana, Gunnar kept walking Giovanna back to her bed for her nap. After awhile, I decided to just let her stay up. She eventually fell asleep on the living room floor on the boppy pillow. I still can't lift her, so I tried waking her up to walk back to bed. Gunnar was helping me trying to wake her. It was so sweet how gentle he was being with her.

Giovanna is loving being a big sister. She is always kissing Giuliana, covering Giuliana with her blanket (her bits as she now calls it), and when I burp Giuliana, Giovanna burps her baby too! Today I was amazed. When I finished giving Giuliana her bottle, I set it on the coffee table. Giovanna picked up the bottle, so I asked her to put it on the stool in the kitchen (that's where she keeps her drinks). She was in there for awhile, and quiet, so I thought she was getting in trouble. I went in the kitchen and couldn't find the bottle. Giovanna is good about throwing things in the garbage for us, so I thought that's where she put the bottle. Luckily she didn't, but I searched the kitchen, dining room, and living room and couldn't find the bottle. I thought to check the sink, and the little gem that she is managed to get the bottle into the sink!

The Easter Bunny brought Giovanna roller skates this year. It's been cold outside, so mommy let Giovanna try out her skates in the house (even though daddy said not to, oops!) Below is a video of Giovanna skating with Papa.

Gunnar holding Giuliana for the first time on Easter.

Trixie #1 and Trixie #2!

Giovanna "roller skating!"

Chatty Cathy!

Giovanna has earned the nickname, "Chatty Cathy!" She is a talker! Below is one minute of a ten minute phone conversation she had with Auntie Loda.

Giuliana is doing well. Things are a rollercoaster for us since we still have to wait a week or two for test results. We're trying to stay positive and enjoy every newborn moment with Giuliana. The only news we have from her doctor's appointment is that she's gained 3 oz since she's been home. She now weighs 8lbs 6oz, and is eating and sleeping very well! I can't believe how strong she is. Below is a video of her at tummy time. She's not a fan! The other night I put her on the boppy so I could warm up a bottle and came back to her on the other side almost off the blanket. This morning I was able to catch it on video. It takes a minute to get going, but she scoots over the boppy!

Giuliana Payton is Here!

Giuliana wanted to come into the world on her own terms! I was scheduled to have a c-section on Monday March 22nd. At about 5:30 a.m. on Sunday March 21st, I started to have contractions. After about 3 hours, I told Joe it was time to go to the hospital. By the time we got there, my contractions were about a minute and a half apart. It went pretty quickly. Giuliana Payton was born via c-section at 12:10 p.m. She was 8 lbs 14 oz and 19 1/2 inches long! Joe was able to see her and take a few pictures, but the neonatologist said he was concerned because Giuliana has an enlarged tongue and she was having trouble breathing. He came and told me he did not feel comfortable with her going to the nursery, and he was sending her down to the NICU. I got to kiss her and she was whisked away.

With everything going on, I really didn't process what that meant. I thought she was just going to the NICU to get checked out and would be in my room with us. It really hit me when I was in recovery, and I could hear the other woman's baby crying in her arms, and ours was in intensive care. Nobody would really tell us anything, and if they did, they were very vague.

Finally after 3-4 hours, Joe and my parents were able to see her. Only the parents and grandparents were allowed in the NICU. I physically was unable to get out of bed, so I couldn't go down. It was the hardest thing in my life to lay there unable to move and not know what is happening to our little girl. Joe and my parents were able to hold Giuliana, but she was connected to monitors, she had an IV, and a feeding tube. Finally, the next day I was able to go down to the NICU and hold her.

The entire week is pretty much a blur. Slowly she came off the wires and tubes and she was strong enough for us to bring her home. We still do not know what, if there is anything wrong with her. They have been running a bunch of tests, but it will be 2-3 weeks before we get any kind of answers about her future. We know we have to take her to specialists, but hopefully we will find out more after we visit her pediatrician. I was discharged on Thursday, and we were blessed to be able to bring Giuliana home on Friday afternoon.

I can't wait for you all to meet her. She is such an angel. I hope you enjoy the pictures, and if you are the praying type, please keep our little Giuliana in your prayers.

Joe holding Giuliana for the first time

Giuliana in the NICU

When she came off the feeding tube, we were able to feed her.
I was burping her here.

This was right before I was being discharged

Giovanna and Giuliana in their matching outfits

sitting on daddy's lap at home!

I really like this picture. Giovanna has one just like it!

They really look alot alike.

Giovanna loves being a BIG sister and is full of kisses

for her baby sister.

In The Spirit Of The Olympics

In the spirit of the Olympics, today we decided to participate in a winter sport. . .SLEDDING! I don't think we have any future Olympians on our hands, but we had a blast! Gunnar got plenty of air time, and Giovanna really enjoyed her first sledding experience. She was at the top of the hill whoo hooing Gunnar, awing at his and other kid's wipeouts, and just laughing up a storm having a good ole time. Joe and Giovanna did wipeout once, but that didn't stop them. After sledding we went to Superdog for Giovanna's first drive-in hotdog! She LOVED eating out of that little box. She got really mad when I tried to take it away from her! Also a Baby Lee #2 update: I recently had a doctor appointment with an ultrasound. Unfortunately, Baby Lee #2 was not cooperating, he/she is head down facing my back, so the ultrasound technician was not able to get any good pictures to share. However, we did learn that he/she is measuring at the 59th percentile weighing in at 4lbs 12 oz.