Thursday, February 19, 2009

17 Months and a Stressful Day

17 Months

Well, Julianne is 17 months old today! I can't believe how time flies by. Julianne weighs more than 25lbs. Its funny to me that she's been wearing the same size clothes since August. She's really just grown taller, not wider, so her clothes are slowly becoming the correct length.

Julianne is crawling, standing and beginning to cruise at our ottomans! She's getting around so well that we have to put her feeding pump in her little backpack on her back so that she doesn't get tangled in the tubing and pull it out! She calls it her "bat pat." She can throw a ball to you (see the video below)...a big ball or a small one. She LOVES that game. Julianne can put most of her shape puzzle pieces into place and can stack all the rings on her stacker. She loves to turn the lights on and off, knock with our door knocker and touch any trees or leaves that we pass.

Cruising the ottomans

The "Bat Pat"

Julianne continues to do well in the speech department. She can count to ten now (when she feels like it), although three sounds like "free" and seven sounds like "befen." She has a musical, toy Maracca that counts in English and Spanish. Today, she was playing with it counting in English and looked at me and said, "enno?" Silly mommy thought she was saying "yellow" which usually sounds like "yenno," so I said, "yes, its yellow." Julianne went back to playing, then looked back up at me and said, as clear as day, "uno, dos?" Obviously, she wanted it to count in Spanish, not English. So, I switched it to Spanish. This girl cracks us up! She likes to say "whaaaaaaat?" and "good boy" and is so sweet when she says "I nuf you daddy, I nuf you mommy" (translation "I love you"). God has brought so much joy to our lives through Julianne. Its hard to remember what it was like without her.

"I nuf you, Grammie and Grandpa"

"I nuf you, Mimi and Papa"

As I mentioned before she's drinking about 3 oz a day and eating some sour cream. Julianne also likes to "brush" her teeth. We really just use it for oral stimulation at this point, but its great that she's putting the toothbrush in her mouth on her own! She won't put much in her mouth besides her fingers.

The Neurologist appointment this week went well. She said overall Julianne looks great. Her left side seemed to have slightly lower tone than the right, but definitely not an amount to be concerned over. She'll have another appointment in 6 months.

The Opthalmologist appointment was a little disappointing. Julianne's astigmatism hasn't gone away. The good thing is that it hasn't gotten any worse! She does have a significant astigmatism, according to the doctor, and she is recommending that Julianne get glasses. She said we could wait 6 months to a year if we want without causing any permanant damage. The doctor told us that Julianne has 3.00 dioptres of astigmatism. You may be wondering, how in the world does a doctor know what Julianne sees. Apparently, with the pupils dialated, the doctor can actually look into Julianne's eye and see that the shape of her cornea is different (causing astigmatism). We are, however, going to get a second opinion. Its not that we don't believe this doctor, its just that Julianne is already treated for so many things that we want to make absolutely sure we're not treating something that doesn't need treatment...does that make sense? Anyway, we are expecting that she probably will need glasses and will get them within the next 6 months. Wating a year would put it pretty close to her Fontan and we don't want too much change going on at once. I'll update about this after we get the second opinion.

Julianne did get her button changed today. It was heartbreaking! I don't ever want to go back to the Bard (the button she had) because it was so traumatic to remove. They had to pull pretty hard to get it out of her (with no sedation or anasthetic) and it bled a lot (I won't go into the details of how they have to get it out). Julianne has been sore all day and slept for 2 hours after the procedure. A MAJOR point of frustration today was that Julianne was SUPPOSED to get a Mic-Key button. This is what we'd researched and planned for and what we told the nurse we wanted when we made the appointment. Well, when we got there I wanted to confirm that she was getting a Mic-Key. Nope. They don't use those. Julianne got something called a Nutriport (which I had no time to research), which they told me is just like the Mic-Key (its not). It has little feet which keep it raised from her skin to help prevent moisture from getting trapped under the button. It's also EXTREMELY difficult to connect and disconnect to and from her feedings! Julianne is so sore from the Bard removal that connecting and disconnecting has been painful for her today...she was screaming, I was crying and the whole time I'm thinking I'm going to accidentally pull this thing out with all this pushing and pulling! It was so bad that we resorted to just feeding her by mouth for the rest of the day (which is basically an ounce here and there) and putting her on continuous feeding tonight for 10 hours! We're stressed about this...can you tell? I am praying that nothing goes wrong over night and that tomorrow she will be more comfortable. The nurse says the port will never get will remain a tight fit like it is now. We'll see how it goes. If it continues to be a problem we'll have to get a different button, but changing it shouldn't be NEARLY as big of an ordeal. Please, if you keep Julianne in your prayers, remember this issue.

Thanks for checking in on our baby boo! Thank you, as always for your prayers and sweet words. Its awesome to know that there are so many people who care about and pray for our little girl.


Anonymous said...

Dear Jessica thank you so much for taking the time in your busy day to post all this information. I wish I could have been there sweetie to give you moral support through all you and Julianne endured yesterday.My prayers will certainly be that Julianne would heal from this ordeal and the connecting and disconnecting would become uneventful.I enjoyed watching the video clips , photos and sweet stories in Julianne's life. As I have said before God gave Julianne the best he had in parents ; be assured you & Kent are making the right decisions for your "baby boo" as his Spirit dwells in you. May God give you his Grace day by day moment by moment as you both wrap yourselves around and enjoy this most beautiful gift in your lives, Julianne. We love you ! Grandpa & Grammie

Drew Caperton said...

We'll be praying for Julianne. I know this has to be very frustrating for you guys.

Anonymous said...

Oh my gosh, what a stressful ordeal. I hope you two are better today. Maybe Julianne will begin to drink and eat more by mouth soon and then her new button can be removed. She can use her "bat pat" for toys instead of formula. Hope to see you all soon. Love all the pictures that you take. The one's with both sets of grandparents are really special. Julianne is so lucky to have so many people that love her-even if we all don't live so close. Love you all so much.

Anonymous said...

We're sorry to hear she had such a rough time yesterday. We'll be praying that her belly feels much, much better.

Loved the pictures and video........she is such a cutie pie, and getting cuter every day. I think she'll look just sassy with some red glasses!!!! : )

We'll see you soon.....huges and kisses!!!

A. Stac

katie said...

We're praying for Julianne! Wow! I can't believe how much grace and patience God has given you both in the different trials you've encountered--you're an inspiration and blessing to all who read about your ongoing journey with Julianne.

Thank you for letting us know about specific issues we can pray about. David enjoys seeing the pictures of your "baby boo" that we're praying for, and enjoys hearing updates on everything she's learning. He even wants to make her something... :) I told him she's not interested in guns or pictures of cannons, though.

We love you!

Elysmom said...

Awww... how awful that she was in so much pain. I hope she feels better today. Poor baby.

I just changed Elyse's Micbutton for the second time. the first time i forgot to use the lubrication thing and my poor baby was in pain. i felt awful. the second time was fast and easy. i was so proud of myself... i changed it all by myself.

Anonymous said...

Forgot to say, love julianne's jean jumper. So cute. Like i told you, no need to rush into glasses. Plenty of time for that later. You are right, she has surgery coming up next year. You sure don't need more to worry about. You know what is right, Jessica. Your judgement always seems to steer you in the right direction. Love you.

jan tompkins said...

Just stopping by heart baby blogs today. Wanted to say hello. I check in on your Julianne and think
she is just beautiful and sooooo
smart. Love the Christmas video when she says "Jesus".
God Bless you all.

jan tompkins said...

Oh, just for the record, our daughter is a pediatric cardiology nurse in SC, so we have an interest in these little treasures.

The Butcher Family said...

What a BIG girl! Julianne is growing so may have a ball player on your hands (she is pretty impressive with those skills)! I love her little vocabulary!

We will definitely keep the g-button in our prayers. I can imagine she is sick of having it messed with. We'll pray it heals quickly and that the new button will be easy to work! No fun for either one of y'all!

We love y'all~ Rebecca

Rachel said...

I am so sorry to hear about her pain with the button. I will pray that this pain subsides very soon, however I am so impressed with her language. I thought my daughter was smart, very smart but she can only count to 5 in English and she is 1/2 mexican but just cant seem to get the spanish language going. Julianne sounds like she is a very smart cookie!

Keeping her in my prayers always.

By the way, i sent you an invite to my private blog. hope you can check it out and see my cutie pies!