Thursday, July 16, 2009

7-17-09

My goodness how fast this week has gone. Kaelyn continues to impress and surprise us. On Monday we celebrated her 1 month birthday. It's pretty crazy to look back four weeks and see how much she has changed. She looks more mature and bigger. Last night she weighed in at a life-best 1,160 grams (2 lbs 9 oz). In no time she'll be over three pounds and chunky as a Michelin man.

This week Kaelyn had 3 tests done. An echo cardiogram, an eye test, and a head ultrasound. The echo cardiogram results said that her ductus (pda) has gone from 'small to moderate' to 'moderate to large'. Just the opposite of what we wanted to happen. So, now they are worried that she may be getting too much blood to the lungs. Kind of weird considering that for the first couple of weeks of her life they were trying to keep the ductus open and now it won't close. The cardiologists are going to perform another one on Monday but are planning on sedating Kaelyn because she was just too feisty for them and they couldn't get the best images this last time. Then, they are going to take it to a weekly meeting and get other cardiologists input on how to best proceed. We'll keep you all posted.

The eye test went well. Basically they check to make sure that no eye complications arise due to her pre-maturity. Which is a real possibility. But, the results came back good and she shows no signs of the complications. Yay.

The head ultrasound went OK. She had one not too long ago and they noticed that one of the ventricles in the brain was slightly larger than normal. They told us that it was nothing to be too worried about but they are going to keep a close eye on it. Then they did another one just barely and not a whole lot has changed. We are really hoping that no major issues will arise.

After we found out about the echo results we were kinda bummed. But then, little miss Kaelyn came to the rescue. After talking to our NP we got looking and talking to Kaelyn and noticed that they had taken her feeding tube out of her mouth and had threaded it through her nose down to her stomach. Finally we got a good look at her face without a tube and big chunk of tape on her cheek. What a beauty! We couldn't believe how cute she is. Then, since she didn't have a tube in her mouth anymore, we gave her a full-size pacifier and she went to town on it. Apparently she loved it because she wouldn't stop sucking, except to catch her breath, and the she was right back up. I know it sounds kinda funny, but that made us so happy that the echo results didn't get us too down. Part of the reason why sucking a full-sized pacifier made us so happy is because it gets her started on the path to being able to eat through a bottle. The sooner she gets her bottle feeding down the sooner we can check that goal off for her to come home. The other goals are: maintaining her own body heat, no major drops in oxygen saturation or heart rate, and getting her heart situation figured out and under control.

Now, I'll let Jeana add her touch with pics and descriptions (she's done all the others so give the credit to her, I just do the writing).

Check out that action!

Her being feisty after we put her back in her isolate.

If you're happy and you know it clap your hands

Check out those chubby cheeks.


Finally I can fit my whole hand in my mouth, life is good:)




22 comments:

Heather said...

I know that she is still tiny, but she looks so much like a big girl. I love the sucking on the pacifier. Too cute and the finger in her mouth are adorable.

Maureen said...

Wow, thank you for sharing that video. She is doing so well. You have such a beautiful daughter Wayne! Make sure you keep updating us.

Lacey said...

Look at that great sucking, you go girl. Oh I need to hurry with her blankie. I'm dying to meet her. If they have to fix her PDA, its an easy surgery. They tried closing jax in the cath lab and it was to big, so they did a PDA ligation. Its not open heart, and has a quick recover. But if her oxygen needs haven't increased maybe they'll wait. Cross our fingers for that.

Bryan & Reiko said...

Don't you love the feeling of putting your finger into the pacifier and having her suck on it. It is so weird. I hope it is okay Liz sent me a link to your blog. Your family is in our prayers.

Denise said...

Thank you for posting a video. It makes her seem so big and I am thrilled to see her in action!! Keep up the good work Kaelyn!!

Mike and Christy said...

What a cute video! That pacifier looks so big for her! We are so glad to hear she is doing so well. She keeps getting cuter and cuter. It's so cute to see her sucking on her fingers. We love you guys and I'm still absolutely loving that hat on her!

Meg said...

Lyndie says Hi to Kaelyn and is jealous she can fit her whole fist in her mouth. She has been tring to accomplish this for months.

Scrappy quilter said...

She does look so fiesty. What a precious little one you have. And so very cute. I love the fingers in her mouth.

The Lehnick Family said...

She is doing so good! She fits her name perfectly! Fiesty! What a sweet video, she will be drinking from a bottle in no time...Thanks for sharing...

Anonymous said...

What a sweetheart! It's great she is sucking so well! You go girl!

Unknown said...

She is such a cutie! I was hoping to drop a book by the nicu on way out of the university hospital, but it took so long for me to get discharged, and Antalya had had enough. Will you email me your address, and I will send it to you? My email is: sunnycardon@gmail.com

........ said...

Oh my goodness she is so darling! That video made me want another baby so bad! Dangerous! I'm glad she is doing well. I hope that the things that need improvement will improve soon. I pray for you all daily here in Riverton.

Kristen's mom said...

Love the video! She really is most adorable. We will put the little something we have working on in the mail soon.

Rebecca said...

Way to grow Kaelyn! Praise God for the full-sized pacifier!

Nate and Jamie said...

Oh wow, she is getting so big. She is definitely a little beauty! Can't wait to see her and you guys again. Keep up the good work Kaelyn

Erin said...

Hey guys,

A friend of mine came across your blog and sent me the link. We experienced many of the same things you are currently experiencing last summer. We found out at our 20 week appointment that our daughter, Ellie, had AV Canal heart defect and Down syndrome. She was due on July 25th but came 11 weeks early on May 9th weighing 1 pd 14 oz and was 13 inches long. She has come such a long way and it is truly a miracle! That was the hardest experience but it has turned out to be the greatest blessing ever! Please check out our blog and e-mail me if you have questions.
Blessings,
Erin

www.thematterinlife.blogspot.com

Erin said...

Forgot to include my e-mail: egray.mn@gmail.com

Shipley Family said...

Kaelyn is absolutely beautiful! Congratulations on your baby girl! This will be THE hardest thing you will ever have to do in your life, but soon the NICU days will be over. We too have a daughter whom has DS and was born incredibly premature.

http://shipleytwins.blogspot.com

Heather said...

Little Miss Kaelyn,aren't you something!New tricks,a new snazzy hat and yes even a new tubie.You are amazing.So darling and yes,getting oh so big.One month.. where did the time go?Before long these days will quietly fall to the wayside and be replaced with new,wonderful,magical moments,I promise.But these Mays are magic as well.Soak them in.memorize them because one day you will look back and marvel in how far you all have come.Kaelyn continues to show you the way, with her strength,determination and her never ending feistyness!Keep it up little one.Your finding your way.

Stephanie said...

Oh, she is wonderful, and gorgeous. That video did me in. She is doing so well! Give her a kiss for me !

Chelsea said...

She is so cute, I can't wait to come and see her! You are awesome, dedicated parents to keep such a detailed blog of her journey, priceless!
Chelsea Clark

The McKnights said...

She is getting so big. You can totally tell from the pictures. And that is awesome that she can suck a binkie. Oakley couldn't even do that till he was 7 months old. She's way ahead of him.