Thursday, July 17, 2008

The last week..

has been pretty uneventful...YEAH! We couldn't ask for more at this point. Our little Bela has decided to play by the rules for the first time in her life..(well, sort of). Last Friday we made a little trip to the ER, just because she dosn't like to go too long without some thrills, I think. She had a very wet cough all last week and we were paranoid it was possibly the start of another big problem...that is how her recent heart failure all started. So we went in to have some tests done and they all came back looking great. Phew! First trip to the ER ever that didn't end up in admission. We were prepared for it but hoping and praying for it NOT to happen. She gave everyone she saw big smiles, and we knew soon after that she was okay. THe cough mysteriously decided to dissapear the next day. It was nasty while it lasted though, and has come and gone too much in her little life, so we decided to do some more testing. We went in for a barium swallow study today after her regular apt with her cardiologist. (the cardiology apt went wonderful, with Bel
weighing in at 9 lbs 9 ounces--8 ounces in one week! :)) The swallow study was not quite so wonderful. Turns out she has a severe swallowing disorder, as the speech pathologist called it. HUH?! What else!? Basically, she has very weak swallowing muscules and so she has been aspirating milk into her lungs this whole time, causing the cough and congestion, and most likely is the culprit for the pneumonia she has last month and the resulting heart failure. THey start out by giving her barium in a liquid form, the consistency of milk. If they notice any aspirations they go up to the next level of thickness. She has to go up 5 levels to the consitency of cold pudding. So bottom line of the study was: no more bottle feeding or nursing for Bela. SHe will aspirate and it is too risky to cause infections. Which sorta stinks because she actually enjoyed her bottles, they usually put her right to sleep. It also means we'll be seeing a lot more of her feeding tube, and she'll probably be using it for a lot longer now. SO much for working at the bottle and getting that thing out of her nose! It sorta upset and frusterated me a little this afternoon, but then I realized that I'm really glad we figured this all out and it will ultimatley help her stay healthier. SHe might even grow quicker without expending the calories bottle feeding. When she does start solids, I will have to thicken them up so there's not chance of aspirating. Hopefully this problem will get better over time as she gets stronger.. Barium is thick white chalky stuff and Bela decided she wanted to let me know just how gross it was so she threw up all over me right after she drank it. I left the hospital today with a huge white mess all over the front of me, and all over her...I'm sure people were wondering what the heck I feed my baby.

Overall, she's doing great. Heart wise.. everything still looks the same, which is good. Except I learned today that her aorta (which started out the size of angel hair pasta) has grown significantly (to about the size of a pen) which is a VERY good thing. In her next surgery they will be reconstructing it to make it bigger (about the size of a thumb) and doing surgery on a 'pen' is a lot less risky than 'angel hair pasta'. Sorry for all those analagies...that's the way it was explained to me. We're most likely looking at having her cathed around the middle of August and having surgery beginning of Sept. We may or may not have to stay at the hospital in between depending on what the cath shows. I sure hope we get to come home. I can't believe that's only a month away. So scary and so anticipated at the same time. There are so many risks associated with the surgery, but obviously more associated with not doing it.

We had her first apt with her endocrinologist on Tuesday for her Turners. IT was sorta wierd to have an apt for the Turners when ALL the focus has been on her heart. It was like, Oh yea, we also need to deal with this for the rest of her life. Right now she is going to need some thyroid hormone because her thyroid level came back low from her blood work. In about a year she will start growth hormone. And that's as far as I wanted to look ahead...there's much more to do but nothing that I wanted to deal with right now. The dr. probably thought I was wierd when I literally asked him to stop telling me what she needed, but I don't care...I can only take so much of what lies ahead for my daughter. He said that physically, she wasn't really a 'text book' turners baby...she dosn't have too many noticable physical symptoms. (Despite her being WAY off the growth charts). He said that she's got two of the most difficult diagnosis for growth against her so we'll continue to shout for joy for every little ounce that she gains.

She also had her developmental evaluation and we got some wonderful results...she is within her age group in every area of development right now except feeding because of the tube feeding. I was sooo happy about that!! So much hospital time and she's still keeping up. We'll get her reevaluated after this next surgery, but at least she's going into it pretty much at her level and not behind..

Wow...is that really 'uneventful' these days?!?! As long as we are home and Bela is pink and smiley, I guess that's exactly what it is...

18 comments:

emcghee said...

THanks for all the "news." I like reading about how you are all doing. Can't believe Bel is FINALLY gaining some weight! 9lbs. 9oz. Whew... what a porkchop! So glad she is doing well.

The Silly Nilly Gass Fam said...

You amaze me. I don't know how you do it. Good for you for speaking up for yourself and slowing that doctor down. I would have been totally overwhelmed and confused so much sooner. Bless little Bella, all that time aspirating her milk. It sounds like a miracle they figured that out. I'll keep praying for all of you. Hi to lil' Benson, have a good summer buddy. Lots of love, Jen

La said...

I love reading your posts. You are ahh-mazing. And I love your babies. Miss them!!

Lily's Mama! said...

Well it sounds like you had an eventful day after we ended our converstation. Leave it to Bela to throw up all that yummy stuff all over you. Don't feel bad, Lily did the same thing to me while we were still up on the 7th floor. And as mentioned above, GOOD FOR YOU, for telling the doc to slow down. You are in the here and now, yes, tomorrow will be there, but you don;t need to take on the stress and burdens of the years to come right now, one thing at a time, lets get little precious, miracle Bela through her next surgery, then they can start in on some things.

Avery, I just wanted to tell you, you are a strong woman, you have more on your plate medically then myself, and you hold your own very well. We both have special girls, but Bela has more it seems to fight against the Lily. They both inspire me! Such special girls we have, and what a strong mama, Bela has.

I am so glad for all the good news, minus the aspirating. Bela will show everyone soon enough that she can do this growing stuff without the NG. Just hang tight, give her time, she has been through an awful lot.

Stay strong, sending hugs! Talk with you soon.

Jenna

AL and ALI said...

wow! i'm glad they figured out the swallowing problem, like you said - it'll be best for her although its hard to give up her normal feeds. but i'm sure it will help in the long run. she is such a beautiful little girl.

Jennifer said...

Avery...What an update! Bela continues to be a fighter and beat all the odds. I am so glad they found out about the aspiration problem, although I am sorry it is one more thing to deal with! I can't believe she is at 9 lbs. 9 oz. -- way to go, Bela! She is bulking right up and will be stronger than anticipated heading into the next surgery. I will stop by to say hello in the next few days...still recovering from our beach trip (my mind is still there, but the laundry is reminding me I'm not!) Take care and we'll talk soon. Love, Jennifer

Matt and Jennae Porter said...

Yes, you have quite a definition of "uneventful"!! That alone would put most people over the edge. We are so glad to hear that Bela is hanging in there and hasn't given you guys any more major scares. She is such a precious little miracle and we love you all.

Lisa W said...

Such good news. I can just hear the relief in your voice and I read your words. Hooray for "uneventful" and hooray for Bela for doing so well. I know this is not your focus right now but I wanted to mention it to you before I forgot. My little sister has Turner's Syndrome. I say little but she's 23 years old. My mom has done so much research about different treatments, etc. and is a great resource when you get to the point of addressing some of that. She lives in Mesa and would be very happy to talk with you and answer any questions you might have, from a mom's perspective instead of a doctor's. Like I said, when you get to that point, that is available. I know that you are so focused on Bela's heart issues right now, as you should be. It was good to see you guys at Eden's funeral. I know that must have been very hard for you both. We continue to pray for you and your sweet family.
Much love, Lisa Whitmore

Simmons Family: said...

Thanks for the update! So crappy that she is aspirating... she'll outgrow it. Owen did the same thing for a while... and now he stopped...BUT he won't eat... I have hope he'll figure it out soon ;)! Bela's gaining the needed weight to get her through the next surgery and that's fantastic!! You'll be relieved to get that done and over with.

Prayers for Bela to continue gaining weight and strength!!! Enjoy your relaxing summer.

Andrea

Erin said...

Avery such great news to hear!!! We are so excited that things just keep getting better and Bela is doing everything she needs to right now. She is determined to get through this and show those docs there certainly is a first for everything! The schedule you keep is amazing and I marvel at how you do it all...but you are amazing so I guess it makes sense. I have missed stopping by as we have had some sickness and I wanted to steer clear, but I will drop in this next week. Cannot wait to see the new "heavyweight" in the house! Keep up the good work and our prayers continue for your family.

Dallas & Krista said...

Good stuff little Bela! Glad to get this update, I've been wondering what's been going on oh, just about a mile away. I am so pathetic, but despite that- I am glad to know that you are all well!

The Ridgway Family said...

So glad to hear that Bela is doing well. It was so wonderful to meet you Avery and I thank you for coming to the memorial. I am sure it was very difficult for you. Like you, I had almost forgotten about Eden's Down syndrome until someone would mention her life-long therapies. I know it can be so overwhelming, but try to focus on one day at a time and do not think about the future. The Lord will take care of everything, I know that. I talk to Eden everyday and I tell her to watch over her special friend Bela so know that she has a little angel caring for her from heaven.

We love you, Keisa

Karla Marçal said...

Avery, I'm so happy about the GOOD news!!!!
Every day I look for the news and I love to hear about Bela is doing so WELL!!!
Keep the faith I'll continue to pray for your family.
Sorry about my english.

Wendy said...

I'm happy that they figured out the feeding issues. I'm always happy to hearing that she's doing better and gaining weight. We'll continue to pray for Bela as she prepares for surgery next month.

Sheri Packard said...

That's the best news I have heard in a long time! I hope it continues to go this way!

Joe and Megan Karlsven said...

Avery, well I am glad that she is doing better, but still seems like there is a hard road ahead. I am impressed how strong you are and we hope that everything goes well with the surgery next month.
-Megan Thomas (Karlsven)

Myers Family said...

Hey Avery,

This is your cousin Karen! I am not so good at leaving comments, but I thought I would write you to let you know Erin gave me your blog address a long time ago, so I have been keeping up with your adventurous life! You guys are amazing and are an inspiration to us all! Thank you for sharing your tender moments and life experiences with everyone. I have been keeping you and your family in my prayers and will continue to do so. I know you don't have much time, but I thought I would let you know our blog is www.mylittlewomen.blogspot.com.
Love your cuz
Karen

Dianne said...

Hi, I've been browsing through your blog. I found it recently and it's interested me though it sometimes makes me cry...I'm 30 weeks pregnant with a little girl with Turner's and HLHS. It's not very common, but it's encouraging to know someone has been down a very similar road. I'll be checking back to see how Bela's doing...and be praying for her too.