Sorry about my lack of blogging this last week, sometimes the time gets away from me, I have no idea where it goes! For example, my baby is already 4 months old today... how did that happen? Time sure is flying, I've already been back at work a whole month!

Payton is doing great. She is so observant these days, and very vocal. She's really starting to explore with her hands, last week she started to grab for toys when I laid her down on her back. She's getting better at sitting up and holding her head up, however she will still only allow tummy time in small doses. :) She loves to stand, whenever I try and sit her in my lap she sticks her legs straight out like a board... it's really cute! She's officially outgrown another wardrobe, and is in 6 months clothes now. She puts everything in her mouth, and loves to chew on her fingers (see below!) I think she really recognizes me and Kyle... when she sees one of us she scrutinizes us for a second, and then figures out who we are and rewards us with a big grin. It's the highlight of my day when I get home from work! :) She hasn't been sleeping very well at night lately, but it has been SO hot in our little house that no one is comfortable. We're having someone give us a quote next week on how much installing an air conditioner would cost, we think it will make this summer a WHOLE lot better! In the meantime, we put our portable air conditioner in her room so at least she can sleep comfortably at night. Last year was miserable, and we don't want Payton to have to go through that... it will make life better for everyone, so we'll see!

Yummy!

Last weekend my mom and sister came to hang out, it was really nice to see them and to relax and have girl time. Chelsea hadn't seen Payton since she was one month old and my mom hadn't seen her for five weeks, so it was way overdue!

Auntie Chelsea feeding me dinner!

Three generations!

I borrowed this from Chelsea's blog, but it's so darn cute... Hanging with Grandma C

I like standing!

Kyle has an online class right now, but doesn't have to go to the college campus for the summer. He said it's a lot of work though, they didn't really give them a break!

Helping daddy with his homework!

Last weekend Kyle went on a backpacking trip with his brothers and a couple of his friends. They went last year and had a blast, so they want to make it an annual event. Unfortunately, this year's weather was not exactly as they expected... there was snow at their campground! Even though it was cold and wet though, they still had a great time... they're thinking of doing it next July though, hoping for a guarantee of better weather :)

Kyle, Bryan and Tanner... it certainly doesn't look like June in this picture!

We've been noticing changes in Payton's hemangiomas! The one on the top of her head is flattening, and is now a darker purple color. The strawberry by her eye is a duller red, and also seems to be not quite as raised. The one underneath the skin (the one we really want to shrink) is not any smaller that I've noticed, but it is softer, which the doctor said is a good sign. She has another appointment this Thursday, I'll keep you updated!

Next weekend we are headed to my parent's lake house for the 4th of July, and we can't wait! The Halls are going too, so it will be a big fun family weekend. We did the same thing last year (without Kyle and Bryan, they reenacted) so this year we're really looking forward to having everyone together. I found out I was pregnant that weekend last year too... what a year it's been! :)

Sorry for those of you waiting for an update on Payton's appointment, my mom and sister are in town so we've been keeping busy! I'm going to keep this one short, and I'll blog all about it when they leave :)

Payton was a great patient as usual! She was asleep for a lot of the appointment this time, it was during her naptime. She got a little fussy because she kept trying to go to sleep and the blood pressure cuff kept waking her up, so we swaddled her and she passed right out! Everything is going very well, the doctor said that he can already see a difference in the hemangiomas! I've only noticed a difference in the one on the top of her head; it's started to turn a darker color, almost bluish purple in some spots. I haven't really noticed a difference in the one by her eye (the one we really want to see a difference in), but when he felt it, he said it definitely felt softer, which he said is a very good sign. Apparently they change colors and get softer before they start to shrink, so he was pleased with the progress so far. He decided to double her dose, but we don't have to go back for two weeks, which is nice. It seemed like a big jump, but he said that if necessary we can double it again, so she isn't at the maximum amount... and if this works well enough, then she can stay at this dose. He's going to reevaluate her in two weeks, and we'll decide what to do at that point. She was pretty tired all day yesterday, but we think her body was just adjusting to the new dose... It's normal for her to be a little more tired, since we're lowering her blood pressure. Don't worry though, today she was back to her normal self! So we're going back July 1st, hopefully there will be an even bigger difference by then!

Doting daddy

Naptime!

I'll tell you about the rest of my weekend in my next blog! :)

Smile

My dad took this video when he came down on Wednesday to watch Payton... There is about a three hour stretch of time when Kyle has to go to school, but I'm not home from work yet, so we really appreciated him helping us out. :) Check it out!

First dose

This morning we went to Doernbecher to get Payton started on the propranolol. We were nervous, but it went very well! She did so great, she is such a trooper. It was kind of confusing at first, at our last appointment they forgot to give us the prescription, and I didn't even think about it, I just thought they would have it there... whoops! :) Luckily there was a pharmacy just down the hall, and they had it in stock. So we got it really quick, and her doctor came in to explain how we give it and gave her the first dose. It's an oral solution, so we just give it to her with a syringe. They took her blood pressure before she got it (with the tiniest blood pressure cuff I have ever seen!) and then took it every 15 minutes for an hour after. She wasn't a big fan of the blood pressure cuff at first, she squirmed a lot when it took the reading, but she eventually got used to it. Basically we have to give it to her 3 times a day, always with a bottle. They started her off on a really tiny dose, and we're going back next Thursday to do it again, this time with a higher dose. He said her dose may get adjusted a couple more times, so we'll see how it goes. As far as her blood pressure, it was fine the whole time! I had her laying on the bed and I brought a couple toys, and she was kicking around and flailing her arms almost the whole time. She was so active that her blood pressure actually went up! :)

Thank you to everyone who has been praying and thinking about Payton, despite these little bumps in the road she is doing so great. She LOVES to chew on her hands (to the point she's gagged herself!) and anything that touches her hands she tries to put in her mouth as well. She absolutely loves her ladybug room, when I'm changing her diaper she sits there and smiles at the wallpaper, and when I put her in her crib for a nap she giggles at her ladybug mobile. She is so much more smiley, and loves to hear her own voice, even though she scares herself sometimes! She's starting to reach out and touch things on her own if we place something in her lap, it's really fun to watch her start exploring with her hands... eventually she puts it in her mouth too :) She doesn't hold on to it for very long though, she loses interest quick. She's getting so big, she weighed 13 pounds 12 ounces at the doctor today, and is already 25 inches long!

This weekend we're going to relax around the house and try to finish Payton's room. We still need to put her letters up, and move the rocking chair up there. I will definitely post pics when it's all finished! Hopefully this weather will start to act like it's summer and I'll be able to take her on a walk or something... she's sitting up in the big girl part of her stroller now, not the carseat!

Thank you again for all the positive thoughts and encouragement, we are blessed to have such caring friends and family :) Have a good weekend!

Love,
Kyle, Jenna and Payton

Eye appointment

Payton had her appointment with the opthamologist this afternoon at the Casey Eye Institute at OHSU. It was a lot of information, so I'm going to try to relay all of it to you, but I'm sorry if I leave something out on accident!

To do the vision check, she had to get eyedrops to dilate her pupils. I was a little nervous how she would react to them (even I don't like eye drops!) but she did fine. Then we had to wait for 30 minutes for the drops to work. She fell asleep while we were waiting, which was great! The doctor could still examine her while she was sleeping, and she was MUCH less fidgety. :) We really liked her doctor, he was very nice and was patient with explaining all of our questions. He said that the retina and optic nerve in both eyes looked healthy (yay!), but that the hemangioma on the left was causing a little astigmatism. With the hemangioma putting pressure on her eye, the concern is that it could cause the eye to fall behind in it's development, so we're returning in a month to check her vision again and to see what effect the medication has had. If the left eye isn't keeping up with the right, he may have her wear an eye patch for a little while each day to make that eye work harder, so it can catch up. He said we can use the eye patch now, but he doesn't think it's necessary at this point, so we're probably going to hold off on making her a little pirate until her next appointment. :) He definitely recommended that we go on the blood pressure medicine as soon as possible, so he was pleased that we're starting it later this week. Hopefully this will solve the problem of the astigmatism, because the hemangioma will shrink.

Her next appointment is on Thursday with her dermatologist at Doernbecher, which is the children's hospital. I guess they used to admit kids to the hospital for a couple days when they gave the propranolol, but they are comfortable enough with it now to only monitor for a few hours. I have mixed feelings about that; I'm really glad that she doesn't have to stay in the hospital, but I also would love to have someone constantly monitoring her heart rate, blood sugar, etc. I'll just be extra worried for a couple days, but I'm sure it will be fine. I will definitely update everyone after her appointment, and let you know how it goes! I plan on taking pictures of her hemangiomas at regular intervals to document them, so that will be interesting too. Her doctor said we may even see a significant difference by this weekend, which would be crazy!

I found a picture online while I was researching propranlol... it's pretty graphic because it's a severe case, so I thought I would post the website instead of posting it on here in case you don't want to see it. The results were pretty amazing though! Here is the link:

http://www.getbetterhealth.com/blood-pressure-medicine-cures-facial-deformity/2009.03.12

Talk to you later this week!

So much to talk about...

So, I am officially back at work. The night before and the morning I left were the hardest, I cried before I went to sleep and I cried when I woke up... but on Tuesday when I went to work I only cried a little when I left... and this morning I was just really sad, but no tears. Kyle brought her to visit me at lunch today, which was awesome. She puked all down my arm and I worked the rest of my day smelling like vomit, but I didn't even care. It was totally worth it :) I'm just taking it day by day! Payton is totally oblivious to the fact that I'm leaving her and I'm traumatized, she doesn't know what's going on anyway! It makes me feel better too that I'm leaving her at home with Kyle, not dropping her off with a stranger... but I am still SUPER happy to come home at night! Nothing has really changed at work. I was nervous about scanning when I came back, but turns out it's like riding a bike. I started scanning my first patient of the day, and it was weird, my fingers were pressing all the right buttons, I didn't even have to think about it. Only made some minor mistakes, and so I'm back in the swing of things!

We spent Memorial weekend in Pacific City with the Halls. It's on the coast, about 20 miles north of Lincoln City. We met everyone at Lincoln City and hit the outlet malls! Payton did really well considering we were totally interrupting all of her naps. She hung out in her stroller and people watched while we shopped! I spent most of my money on buying her clothes though, not me. Her clothes are so much cuter! I'm still in the "nothing fits me right" stage, but I can't really complain... it's a bit unrealistic to hope that the baby weight just magically falls off without effort. :) We stayed at a huge campground that also happened to have cabins, and when they told us it was small, they were NOT kidding...

Our little shack!

Imagine seven adults and a baby in this spacious living room!

The boys in their matching free t-shirts from our shopping trip :)

The cabin was great... just very cozy! We spent Saturday and Sunday night there, hanging out and going to the beach. Payton fell asleep in the car when we drove onto the beach, so we let her sleep in there (I was right next to the car with the window rolled down) while the girls relaxed in fold out chairs and the boys did... various activities!

Golf

Catch

Whale watching

Us :)

All in all it was a really fun weekend! We were glad to come home though... our little house felt so spacious!

Dad likes playing around :)

Napping with Uncle Tanner

My first game!

Grandma Sue bought me a new hat... isn't it cute?!

Ready for the beach!

My family was really proud of me for holding the baseball :)

Another really exciting thing happened this weekend... Payton started sleeping through the night! We were VERY excited, as you can imagine! She finally fell asleep Saturday night around 10:30, and when I woke up Sunday morning I heard birds chirping... it was 5:30 am! I put a binkie in her mouth and she slept for another hour... I was amazed, needless to say. She has been doing it every night since! We put her to bed around 9:00pm, and she's been waking up around 6:00am, getting a bottle and going back to bed for another hour or two. It was a very nice gift for her to give her working mommy! :) We also decided it was time for her to move to her room and start sleeping in her crib. I was sad but I definitely think it's best. She's a light sleeper and can startle easily, so she sleeps better in a dark quiet room where she can't hear anything, and I sleep better because I'm not waking up at every little noise she makes. We just hope that it continues like this, it's going really well so far! She's still not really on a nap schedule, so that's my next goal... to get her to take good long naps instead of shorter cat naps, which she tends to do. I'll let you know how it goes!

We switched Payton's reflux medication about two weeks ago. I was frustrated with the constant changing of dose, and it seemed to only work part of the time. Her doctor had mentioned another medicine that we could try, and when I researched it a lot of parents said they had much better success with it than the zantac. It's generic prilosec, and has to be made at a compounding pharmacy by a pharmacist. From what I understand, the zantac is an acid reducer, but the prilosec blocks the acid from being produced altogether. I didn't want to use such a strong medicine if it wasn't necessary, but the zantac just wasn't cutting it and I am happy to report that (knock on wood) she has not had any "reflux" episodes since about three days after starting the new medication. We've seen a definite improvement, and thankfully haven't had to make any trips to her doctors office the past few weeks. Yay!

Unfortunately though, poor Payton can't seem to catch a break. We started to notice last week that the area by the hemagioma around her eye was looking a little puffy, and her eyelid looked like it was starting to... droop, for lack of a better word. There was a part of me that just hoped I was imagining it, but Kyle's mom noticed it too when she saw her, so I knew I needed to get it checked out. I had a gut feeling that maybe it was another hemangioma... so I called her doctor's office and asked for a referral to a dermatologist. They gave me the name of a doctor at OHSU (Oregon Health and Sciences University for those of you who aren't Oregonians), which is known for being the best hospital in the state; they do a lot of research, and have all the cutting edge technology and specialized doctors. I looked up the doctor they referred us too, and it turns out he is the director of pediatric dermatology and he specializes in hemangiomas and other vascular birthmarks. Basically, he was exactly the guy I wanted Payton to see! We were able to get in the next day, which was awesome. The dermatology unit is on the 16th floor of a building on the waterfront, so the view was beautiful.

I know I'm a huge dork for taking a picture, but I couldn't resist the view!

Payton's appointment went ok... his opinion wasn't unexpected, but it was still hard for me to hear. Basically, he agreed with me that it looks like there is a hemangioma growing under her skin too. They're called deep hemangiomas, and he said when they happen around the eye they treat them pretty aggresively. Depending on how deep they are it may take a while for them to be noticed, until they have grown enough to be seen, which is why it took so long for it to present itself. They took pictures and measurements of her other hemangiomas as well. The one on the top of her head is starting to flake a lot, and he said that may be a sign that it has reached it's peak growth, which would be good. We have to put vaseline on it a couple times a day to make sure when it flakes that the skin isn't splitting, because that could cause it to bleed and it could become painful and infected. Something we definitely want to avoid! Anyway, back to the main issue... the problem with this new lump is the fact that it's basically a mass of blood vessels that is rapidly growing inside her skull, and we don't really know the extent of it. If it's starting to push on her eyelid, it could be putting pressure on her eyeball or other nerves as well, which could affect her vision or other developmental abilities. I'm sure this is all worst case scenario, but still scary to hear about your 3 month old baby. :( He wants her to see an opthamologist right away to check if it's affecting her vision, so she has another appointment at OHSU on Monday with an opthamologist. He also wants to see her next Thursday at Doernbecher's, which is the childrens hospital at OHSU. He said we will probably put her on propanolol to treat it, which is a blood pressure medicine. I know that sounds weird, but I guess it's a really recent treatment. About two years ago a doctor was treating two infants with heart problems, and the babies also happened to have hemangiomas. While they were on the medicine the doctors noticed that it shrunk their hemangiomas as well, so it was an unexpected side effect! Apparently they noticed a difference in 24 hours, which is pretty amazing. They've been using it since to treat dangerous or disfiguring hemangiomas. The traditional treatment used to be taking an oral steriod, but that has side effects like insomnia, irritability, and could possibly stunt her growth. Not something I want her to take if it's not necessary! The blood pressure medicine hasn't undergone any clinical trials or anything in children though, so it's still pretty new and unexplored frontier. The only side effect they've seen thus far is low blood pressure (duh) and low blood sugar, so she has to take it with a bottle. It will also shrink her other hemangiomas in the process, which is a bonus. Before she can go on it though they wanted her to have a baseline EKG, so she had that done yesterday. She did such a good job through all these appointments and being poked and prodded all day, she just laid there and was a champ! When they give her the medicine she needs to stay for observation for at least an hour, and anytime they change or up her dose she will need to be monitored too. Hopefully, this will take care of it... we really really hope so!

I don't have a really good picture that shows it, it's really subtle... but you can kind of tell (especially when you see her in person) that her left eyelid is taking on a different shape...

So, to sum up (I know this is a ton of information, trust me my head was spinning yesterday!); she's seeing an opthamologist on Monday, and the dermatologist again on Thursday, when we're presumably starting the blood pressure medicine. I'll let you know about her appointments as soon as I know something!

I would like to end on a happier note, and I think this video will do that... :)