Meet Sienna

Our newest addition to the family....

Sienna

This is one of Kate's babydolls that she has playing mommy to.  First she fed her a bottle.  She used Kylee's after she was through with it.  Then she put her in the high chair so she could feed her oatmeal.

                                                        Kate telling Sienna to smile

            Kate said "here comes the airplane coming in for a landing."  And yes it's real baby oatmeal.

She's too funny!  I asked her if Sienna ate all her oatmeal.  She said, "aww, it's just pretend."  She also has another doll named Jenna.  Poor Jenna has to get her heart fixed just like Kylee, but lucky Jenna only has to be in the hospital 2 days!  I couldn't get her pic because she was asleep in the swing and we didn't want to wake her.

Christmas And 6 Months Old

Hope everyone had a good Christmas!

Despite being sick, Kate had a great Christmas and when she woke up Christmas morning, she said "what happened?"  She was also very excited to get to spend some time with Uncle Mike and even went to see the new Alvin and the Chipmunks movie with him.  As I mentioned, Kate has been sick with what is probably a lingering sinus infection.  Poor thing, she had a fever for a couple days, and has tons of congestion which makes her cough almost to the point of gagging.  I took her to the Dr. on Saturday and he gave her another allergy med and some nose spray which has helped.  Even though she is sick this doesn't stop her from being wild and crazy like normal.

Kylee has been doing well.  She turned 6 months on the 18th.  She did have another checkup with the cardiologist a couple of weeks ago and surprisingly her o2 sats were in the low 90s.  For a baby with her heart defects that is really good.  She had her 6 month checkup with the pediatrician and let's just say she was not happy.  They had to test her thyroid levels(which came back normal).  They tried to get blood out of her heel twice with no luck, then twice in her finger which finally worked.  Then after all that she had to get both flu shots and another shot.  She ended up crying and screaming for about 15 minutes.  She will have to go back one more time before surgery for more shots. 
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I can't tell you how much she can brighten your mood.  She almost never cries.  She loves to smile(except when trying to take her pic), talk, and loves to be tickled.  She will laugh in anticipation of being tickled, which is really cute!  She is such a sweet sweet baby! 

It's hard to grasp that in 2 weeks she will have to have open heart surgery.  Although we are excited for her to have her heart repaired, we are both scared and nervous.  I tend to go through a mixture of emotions daily, but it is hard to stay upset when she just looks at you and smiles.  As far as her surgery goes, she will go in on Tuesday, Jan. 12th for all her preworkup stuff and then we will talk with the surgeon and go over everything.  I will be bringing the laptop with me, so I will try and update as much as possible on here as this will be the easiest way.

Here are some pics of the girls, mostly Kate.  Even when she is sick, she still likes to be silly and pose for the camera.

Kate said this is the face that the bird made on her tinkerbell movie!

Oh, I'm working on changing the background on here so it's easier to read, but am having a hard time doing it myself, so i'll have to enlist the help of my husband.

Our Busy Week

We have had a busy few days full of appointments.  Last friday, Kylee had her last cardiology appointment before her surgery.  Since she is doing good, the dr. didn't feel the need to have her come back.  Her o2 sats were at 87% and she weighed 13lb 10oz.  We had the surgery rescheduled and it will now be the 13th instead of the 11th.  The surgeon does not want her to have tubes put in her ears until after her heart surgery.   She had an appointment yesterday to receive her shot to protect against Respiratory Syncytial Virus, which she hated.  She passed the 14lb mark at 14lb 2oz.  The pediatrician mentioned that at her 6month appt next week she will have her thyroid tested, which is standard procedure for kids with down syndrome, but she also has a low body temperature which can be a sign of thyroid problems.  Her temp. yesterday was 95.9.  She also had her 3 therapy appts, which are nothing different.

Kate had her speech therapy appt and is doing so well that she will probably only have 2 more sessions.  She flipped out at the dentist, which they only were cleaning her teeth, but they first tried the electric toothbrush which was quiet, but for some reason she was scared of it.  Lastly, she went to see the ear, nose, and throat specialist because she is always sick with cold like symptoms.  For the next 6 weeks she will take an antibiotic and then they switched her allergy meds, but more than likely after Kylee's surgery, she will have her tonsils and adenoids removed.

Yesterday, we took Kate to Chuckee Cheese to go play with her friend from school, Joseph.  Those 2 together are soo cute!  They are always hugging each other at school and get so excited to see each other.  When we were there another little girl and asked Joseph if he wanted to play.  They went up in the tubes and Kate loudly said, "she stole my boyfriend!  I'm coming Joseph!"  For 5 hours they ran around and played games, ate pizza and ice cream, held hands.  We also had fun getting to know Joseph's mom, Mandi.  They actually live less than a minute down the road from us. 

Kate's reading skills have really taken off.  She can recognize a ton of words, but she also can sound out alot of words as well.  Somehow she was able to sound out down syndrome today.  She amazes me!  She is really looking forward to christmas as well as Phil & I.  Next week is our last week of all appointments until Kylee's surgery.  We don't to take any chances with her getting sick especially right before surgery for 2 reasons.  First, if she gets sick before her surgery, they may have to postpone it and their schedule is pretty busy and we wouldn't be able to get her in until Feb, unless of course she started having problems.  Second, if she gets sick, it can really pose risks for complications with and after surgery.  Being in the hospital for 2-3 weeks is long enough, I don't know how others manage with longer hospital stays.  One mom, Joye, her little boy Ethan was in the hospital for 9 weeks.  Kate is also looking forward to Uncle Mike coming. The other day when we asked her about going to see the person who brings presents at christmas, she said, "Uncle Mike!"

Pics, Pics, And More Pics

Kylee puts just about everything in her mouth, including her stuffed bear.

I got all my pics that I ordered from Anna today. If anyone wants any, let me know so I can order them from her. Keep in mind that I scanned these pics, so they don't look as good as the original photos which are great!

*Check out a video with Kylee in it that I posted at the bottom of the blog.

Thankful

Since we had our thanksgiving dinner yesterday, I decided that today would be a good day to say what I am thankful for.  There are many many people and things, but the top of my list is of course my 2 sweet daughters, and of course my husband as well, but I feel the need to say I am extremely thankful for these people.  And no it is not the lady dressed in the racing gear.

Without these two people I don't know where I would be.  They have done soo much to help us, the list is endless from financial help to emotional support, to watching Kate, having her stay overnight, filling our bellies. etc. etc.    Even though I don't say it often, my mom is someone I inspire to be.  She not only is there for me and my family, but she helps my brother out, she does alot around the house while trying to catch little cat naps before having to work at night, and she takes care of my 91 yr old grandpa.  Since my grandparents moved to nc, she has been the primary caretaker of them(now just my grandpa).  She does all this while barely taking time to do for herself. 

I, we all really do appreciate all you do for us.  So, thank you!  We love you and Kate says, "I love you parrot."

My Two Sweet Girls

Getting so big!

My goofball who loves to ham it up for the camera!

Hey!

Another Visit With The Cardiologist And The ENT Dr.

Nothing too exciting to report at these visits today, which is good news.  She had a checkup first with the cardiologist.  We took her because she has been a little fussy and gets more tired with feeding.  The Dr. said she is stable and doesn't see any new issues, in fact one of her concerns had been with what is called the pressure gradient of her pulmonary valve.  This basically has to do with the amount of obstruction or narrowing of the pulmonary valve, the higher degree of obstruction the harder the right ventricle has to work to get blood out to the lungs.  Anyways, the number last time was around 115, this time it was 105, which is still high, but the cardiologist said it is nothing to worry about, it is typical of babies with tetralogy of fallot.  She hasn't gained any weight, she was 13lb 5oz.  The nurse had weighed her twice and I told her I didn't think it was right because it said she was 16 lbs and that would mean she gained like 2 &1/2 lbs in 1 week, but she insisted that that was what it was.  Needless to say, the Dr. had her get weighed again.  Her o2 sats were down from 90 last time to 84, but for her it is still good. 

After her cardiology appt, we went to see the ear, nose, and throat Dr., but he really only checks her ears.  So the plan is to talk to the surgeon who will do the surgery on her heart and see if he is ok with letting the ENT put tubes in her ears the same time as her heart surgery to prevent her from having anesthesia twice.  We will also see if they can do her hearing test then which also will require her to be sedated.  She initially failed the test for her left ear, but they are unsure if that is due to the fluid in her ear or not.  Hopefully the surgeon won't have a problem with this.  The placement of the tubes and the hearing test together should only take about 30 min.

So the only conclusion we came to was that her irritability could be due to teething and/or congestion.  Other than this, she still smiles. laughs, talks and is happy most of the time.  Kate on the other hand.....

Happy 5 Months

Today Kylee is 5 months old today.   It seems like it has been so much longer than that.  She is such a sweet baby and she definitely brightens your day.  It is hard to be in a bad mood when she almost always has a big huge smile on her face.

Things about Kylee
she weighs around 13 &1/2 lbs
she is a happy baby
she can roll from tummy to back when she feels like it
she can sit up fairly well when supported
she loves to smile, laugh and talk esp. to mommy or daddy
she loves to be cuddled although sometimes it has to be a certain way or she is not happy
she loves to taste things we eat
she loves talking to her toys but prefers people
she is a happy baby
she is cute
she is working on getting 2 teeth
did i mention she is a happy baby?

I just love her soo much!  She has definitely changed my perspective on life for the better.

Today, we had xmas pics done at cousin, Anna's house.  She does an awesome job esp. considering it is not easy getting the 2 little ones to cooperate at the same time.  Kate is so photogenic and loves to pose(thanks to grandma who has Kate model for pics all the time), but had had enough after awhile.  I think Anna said she got about 200 pics.
We took some of our own, so here are a few.

talking to Daddy

are we done yet?

please no more pictures is what is going through Kate's mind