Wednesday, November 17, 2010

gone for good!

You know when life is being so good to you you wonder if it's your turn for something to happen? Is that a horrible way to think? I don't think I used to think that way, before Bela's medical issues came crashing down on us one day. I guess I just don't want to take one single day of my life right now for granted. Time is going so fast and there's so much good..
To name a few...

1. Bela is an eater.
Such a simple thing to say, but what a HUGE accomplishment for her! Most of the time I knew that one day I'd be able to say that, but there were also days I was unsure if she'd ever get her tube out. It hasn't been easy since that day she pulled out her own tube. The first week was BAD. She was not eating very much and I was worrying myself sick everyday. We prayed like crazy during those days. There's only so much you can do to get your daughter to eat when she is refusing. She hit a really low point and now looking back, I realize that she needed to get there in order to decide she needed to eat.
There are NO words to describe how good it is to not tube feed or do anything associated with it. I can't believe how easy life is without it and how much more time I have to enjoy life and my babies. Throwing all her supplies away was liberating!

2. Yesterday we had a GREAT cardiology appointment.. our best yet!
Not only was she up from 9.6 kilos to 10.1 kilos :):):):), assuring us that her tube is definately staying gone for good, her echo looked fabulous! Her heart function continues to be better than anyone originally thought possible.

3. Benson turned 5!
That boy is the definition of sweet, I could not be luckier to be his mommy. He loves that he can now say he's 5. I'm not sure how I feel about having a 5 year old yet.. but he's sure fun.

4. Baby number 3 is healthy and the pregnancy is going great.
I can't believe I'm already 29 weeks. Bela's cardiologists did a fetal echo on the baby and reassured me that everything formed perfectly. I could not believe the difference between her heart and Bela's. I'm really enjoying this pregnancy, apart from horrible sciatic nerve pain. I'm so grateful for her health.

5. It's the holidays! What isn't happy about that?! I'm baking too much though. I usually control myself, but something has happened to me latley.. I just made these and they were amazing.. yumm.

Tuesday, October 5, 2010

Bela's tube feeding journey

Bela today at the park.. tube free. I tucked her shirt in to keep sand out of it. You can tell there's no bump, just a perfect, smooth little belly. :)

I wanted to documented our journey with good 'ol tube feeding... sorry, this may be long! I have been tube feeding Bela for 2 years and 8 months.

The horrors of the NG tube are STILL with me. I cannot think about it without having horrible thoughts, but as Tanner always has to remind me, we did what we thought was best for Bela at the time. IF I could go back in time, (which is a very silly thing to say, because I can't) I would have NEVER subjected Bela and our family to that devilish little tube for as long as we did. Getting through a year with that thing was probably the single hardest thing on me we'd been though up to that point . It really was that bad. We tried and tried to get her eating before we put in the G-tube, but she was just not ready yet. I know that she needed the G-tube in order to learn to eat. It was a very crucial step for Bela. She needed lots of time to heal from the pain and trauma that the NG tube caused her. A week after her first bday I stormed (quite literally) into Dr. Graziano's office and with tears in my eyes begged her to schedule us asap because I was not going to put it in again. I was DONE. I know I was not the first mom she had seen in that condition . She scheduled us the next morning and told me Bela would never see one again. Although terrified of another surgery, there was real relief on that day. Her g-tube has been good to us. It has allowed us over the last year and 8 months to very slowly break down the trauma that the NG tube, breathing tube, suctioning, reflux, aspirating, gagging, and vomiting had caused. She really had SO much to overcome. It took several weekly therapists, trips to Tucson to work with more therapists, and lots and lots of work at home. And now.....

1 year and 8 months later...

We said goodbye to the G-tube today!!!!!

I'm still trying to wrap my brain around it. This morning about 9 a.m. I was in the laundry room doing laundry and Bela was in my room watching a cartoon. It's right down the hall so I can hear everything that goes on in my room. I came in with a pile of laundry and noticed she was holding something in her hands.. I thought it was nail polish or something. I put the laundry in my closet and went over to see what it was and to my astonishment, it was her tube. What's wierd about it is that the balloon the holds the tube in her tummy was completley inflated. You have to deflate the balloon in order to get it out of the tiny hole in her tummy. I have NO idea how she got it out, and how she did it without any pain, crying, or any peep at all. It was all the sudden just in her hands. She never usually messed with it, she knew if she tugged it hurt. It's a mystery.

So anyway, I sorta freaked out for a minute, trying to decide what to do first. It's ironic because I hadn't used her tube in 10 days. I decided it was time to stop giving her food here and there through her tube and to see what she was able to do without using it at all. Her eating has been so great lately so we were giving her a 'trial run'. I really felt like I was just holding her back by giving her a little of her food through the tube.. She wasn't having to be truly hungry. Her eating skills were finally there, so I went for it. She's been doing so great, there was talk of possibly removing it in a month or so IF she maintained her weight. But I wasn't sure if I should just seize the opportunity to just go ahead and be done with it for good or stick it back in. Only thing was, her hole looked completely shut tight already. I had no idea how long it had been out, but the hole is so small it closes up really quickly, so you don't have a big amount of time to get it back in if it comes out. It looked like it'd be really hard to get it back in, not to mention painful for her. I called Tanner twice, but he was in a meeting and didn't answer. So I called her cardiologist NP for her opinion. She told me to just go ahead and leave it out, that it would probably be a good thing for Bela and thought maybe Bela was just trying to tell us something. She's really good at that usually. So what was done was done! It was OUT! I'm still trying to wrap my brain around the fact the she no longer has a tube. It's really wierd after so long to not be able to feed her even if I wanted to. I'm just so used to it.

After I talked to the NP, I went back in to talk to Bela. She was still playing with her tube, and I asked her what she had. She held it way up and happily said, 'My tube!' Then I asked her if she was all done with her tube, and she clapped her hands and said 'All done, mommy! Yeah Bela!'

I feel really hopeful about this. I had been confused about what to do and Bela decided to make the decision easy for me. I think it was an answer to prayer really, because I had been praying a lot lately through this little 'trial run' about her eating and about knowing when and if she would be ready to remove the tube. It feels like a blessing. Then she proceeded to eat a great, big lunch right after! She still has her days and meals that she doesn't want to eat much, but she's 2 and that's just normal. Then there are meals where she eats great. I just HOPE so much that it's enough. I want to just be able to trust her to eat when she wants and how much she wants. I can't begin to say what it would be like to not have to count calories, and to count every bite of food she takes. And I am seriously considering burning her tube feeding supplies that take up two drawers in my kitchen! Just throwing them away just doesn't seem like enough..:)

Hopefully today marks the very end of Bela's tube feeding journey. It's cause for celebration around here!

Eating her M&M's during conference. She was 'playing bingo'. She loves chocolate.

Wednesday, September 8, 2010


I can't seem to wipe the smile off my face or find the ground.. I am elated! We are having another precious baby GIRL. More pink it is!!

A baby girl with a beautiful, healthy heart with 4 chambers that I did count out loud. And then I cried.

I realized as soon as I laid down on the table that I was extremely nervous. All the sudden I realized I was about to find out if there was something wrong and I didn't want to go thru with it. What if? I wasn't ready to handle it. But we had the same tech that did Bela's ultrasound and found her heart defect and she knew how I was feeling. So she went straight for the heart and right away up popped the most BEAUTIFUL thing I have ever seen. 4 chambers and a nice, big left ventricle. I don't think until right then I realized how much I'd worried I wouldn't see that, and it felt amazing to see it so clearly.

I want to remember this.. The tech said on a little 8 ounce baby it is extremeley difficult to get as great of pictures of her heart as we were able to get. She said our little girlie was in the perfect position right from the start to get perfectly clear images of her heart. She must've known I needed to be comforted today. It was a tender mercy.

Then I met with Dr. Huish who further told me it was perfect and that all other measurments were too. He told me to stop worrying and enjoy the rest of my pregnancy. Feels soooo good!

Tuesday, September 7, 2010

Pink or Blue?!?

Tomorrow is our 'big' ultrasound. For me, the 19 week ultrasound used to just mean finding out the sex of the baby. Now I feel like it's more of an afterthought, although still ultra-exctiting. I cannot wait to know if another baby boy or girl will join our family, but oh how I want to see a healthy baby on that screen!! I want to hear that everything is measuring perfectly and that the heart has 4 beautiful functioning chambers. I want to see them and count them. And then I might finally let go of that tugging worry that I've been trying to dismiss for 19 weeks. I'm so nervous, but I'm ready.
I've started to feel some good movement this last week.. I just LOVE that part of pregnancy! I've been waiting {not so patiently} for those first movements.. It has been reassuring to me, and I'll take it..
Wish us luck! :)

Monday, August 16, 2010

Patriotic Bela

I love this girl

{picture taken back in July by Ang}

Thursday, August 12, 2010


There is one happy, snuggled up little girl in her crib right now. We've been home a couple hours now and the minute we laid her in her crib she fell asleep. I keep checking on her and she seems very comfortable. She's so glad to be home. She'll need a few days to recover and some good rest.

I'm ready for my turn to crash now. I think I slept maybe an hour all together last night. Bela had a rough night and wanted mommy to 'hold you' all night. I wish yesterday morning I could've just had a tiny glimpse of her home sleeping in her crib tonight so that I could've spared myself some of the worrying of yesterday, (was that really just yesterday?) but unfortunatley that's not part of the deal. You have to go thru all the worrying because it's all such an unknown until it's over.

I said this during her 2 day g-tube surgery stay, and I'm saying it again, I honestly have NO CLUE how I did that for weeks and weeks that turned into months. I walked Bela around the unit today and saw many post op newborns fighting for their lives, and it is... I don't even know what the words are to describe it. It's humbling that Bela is where she is today, it's inspiring that these tiny heros are up there every day in the fight for their lives, it's heartbreaking to watch mothers standing over there fragile new babies, wondering if they'll have a tomorrow. It's frightening that it's a world our family knows so well, it's inpsiring when you see a 3 year old with 4 giant drainage tubes smiling at you from her hospital bed where she's been for over a month, it's a lot of things. It's very emotional, to say the least. It's a whole different world in there, and it's easy to forget that world when you've been home awhile. How very precious good health is, and how very often it is taken for granted..

THANK YOU to all of you who were praying for her. I received so many texts yesterday letting me know she was being prayed for and thought of and each time I read one it brought a smile and a beautiful reassurance. In those moments, they mean SO very much. When you're sitting there, staring at the wall, feeling so empty, and an 'just wanted you to know we love you and are praying for Bela' message pops up it's just what you need. We felt so much love, and that's what it's all about..

Being comforted by daddy while she was coming in and out of sedation

And now...Good night! :)

Oh, and one more thing... She did get that IV out. I held it on her while she was getting meds through it for the first 6 hours or so, and then as soon as she got her chance, it was out. And she was so proud of herself. They were very nice and allowed her to keep it out the rest of her stay.

Wednesday, August 11, 2010

Room 9

The relief I feel when she is back in my view is indescribable. Even though she's a little beat up, wearing an oxygen mask, and bandaged in a few places, she's done with the hard part and on her way to recovering.

She came back about an hour ago, a couple hours less that planned. :) After taking measurments they decided it best to balloon her aorta and were able to stretch it from 7 mm to 10 mm. Ideally it should be 14 mm so they may have to repeat this whole process in a few months from now to stretch it a little more. And then at her next surgery, when she is opened up, they'll most likely have to take the whole narrowed 'chunk' out and rebuild it using a piece of a vein from her neck. Sound complicated? Yeah.., we'll deal with that when we get there. And that's just the aorta! That's on top of the already complicated surgery.

The doc seemed pleased to get it from 7mm to 10 mm today so we'll take it. Should help alleviate some of the pressure build up in her heart for now.

I'm SO grateful to say she's back, everything went well and there were no major complications. At one point her blood pressure dropped substantially so they had to pull everything out, give her a heart med and some time, then try again. The second go around she responded much better and her pressures stayed higher.

She is sleeping right now, but was one MAD little girl when she came back up. She woke up and immediatley started pulling out her IV yelling, "get it out!" She was thrashing and her leg incision started to bleed and nothing was calming her down so they gave her some good ol' ativan and since it's her drug of choice, it calmed her right down. She will probably wake up again soon and be just as mad and get more drugs until the effects of the anesthesia wear off. But I'm pretty sure she's not going to give up on getting that IV pulled out until she's succeeded. I'm telling them she's one determined little girl.. they saw a glimpse of what I meant when she woke up. I'm SO glad she is.

I guess someone else is tuckered out too...

Not so good to be back

Bela is finally in the cath lab. She woke up this morning with yellow snot dried all over her face. I seriously couldn't believe it. The morning of her cath... of course. So I texted our NP and still came, knowing there was the possibility we'd be sent home. It took three hours to decide, but finally her cardiologist and anethesiologist decided she was okay to go ahead with it. It has made the nervous pit in my stomach that much worse. I don't know why that had to happen today. She hasn't been sick in so long.

When we were given the go ahead they asked us if we wanted to walk her into the cath lab. I didn't know if I wanted to or not, but figured if I could be with her that much longer I'd go ahead and do it. I had no idea what I was agreeing to. When we got in there they had the gas mask ready and had me hold it on her while I was holding her. I think it might've been one of the worst experiences I've had so far in this place. Seriuosly, I was a mess after that. As she arched and fought and wondered what I was doing and why she was feeling so wierd, I had to force the mask on her face and hold down her hands. She cried out to me, mommy, mommy. It seemed to take forever, and then finally her eyes started rolling into the back of her eyelids and she stopped fighting, limp. I don't know what was worse. Fighting or how she looked when it finally took over. I NEVER again want to see her like that, or do that again. It was just horrible. I usually hand her off to a nurse crying, but now I know that that is WAY easier.

I'm trying to get ahold of myself and stop seeing what just happened in my mind. It's just crummy being back here, in this waiting room, writing about her in a procedure. It never becomes easier, somehow I know that I will never just accept that this is her life, never just be okay with it, as much as it is completely her life.

I'm reminded by her nurse that this is just a cath. I know that. But nothing is 'just a' anything when it's YOUR daughter. It's just not easy, none of it.

Her cardiologist that is doing her cath said he'd have the surgeon come in to "just to be there in case." That's not what I want to hear, but he was clear and forward with us about possible complications, and I appreciate that about him.

Tanner just said to me, aren't they supposed to page us with an update? To which I responded, well it's only been 45 minutes. And he said, longest 45 minutes of my whole life. SO glad he's here with me. He loves his little girl.

We are in the waiting room with a family waiting for their son in a 6 hour surgery and I feel for them. There is nothing like waiting during open heart surgery. I am grateful we have another year before hers.

Waiting on an update.. Will write when I get one.

Sunday, August 8, 2010


The week of the 11th has come.. darn it. Bela's cath is on Wednesday. When everyone else will be sending their kids off to their first day of school, we'll be sending her off to the cath lab.
Today I was so grateful for church. I'm grateful to start the week off with it every week, but especially this week. Although I tried to make a comment in Relief Society about Wednesday, I'm not sure anything really came across. I wasn't even emotional thinking about what I'd say, but as soon as I started to talk, I couldn't get anything out. I think it was the first time I'd actually put it into words to anyone but Tanner. All the sudden I felt so scared. And then there were so many great friends that wanted to know more about it, what was going on, how they could help, what they could do for us. That is why I love my church. There is such a strong sisterhood of women ready to serve and help wherever needed. It was nice to get it out there. To know that maybe some of them will remember her on Wednesday and say a prayer for her. It is uplifting and helpful. I'm so worried about complications and my mind is very occupied right now. During sacrament meeting my favorite scripture was read:

For God hath not given us the spirit of fear, but of power, and of love, and of a sound mind.

A wonderful reminder to me. There were weeks I read it everyday.
Today we talked about the possibility of Benson going on an airplane trip with Grandma and Grandpa Milne to a cabin on a lake in Washington from Tuesday to Wednesday. Of course my mommy mind starts to think of all the possible things that could go wrong. Benson gets lost at the aiport, he falls in the lake when no one is watching, he's sad and lonely at night. I have total confidence in my in-laws, it's just what my mind does. It's so annoying. Is that normal? I wonder if I am up to having a third piece of my heart walking around and able to get hurt and feel pain. You become a mother and your heart is forever changed. You feel the most incredible amount of love and joy you never thought was possible. And because of that you are also capable of feeling pain you never thought you could feel. It's a very vulnerable feeling. That's being a parent. For me, it's doing everything you know how to do and having hope it is enough. It's realizing how much you need a loving Heavenly Father and his constant guidance.

It's 10:00 at night and through the monitor I'm listening to Bela singing 'I love you, you love me, we're a happy family" over and over. Oh she makes me smile.
There are two sides to Bela's heart. One is fragile, broken, and overworked. But then there's the part that matters, and she has got more heart than anyone I know. This month I was supposed to be watching for signs of heart failure, but all she's shown us is her happy, energetic, non-stop heart. The one that is more powerful than the broken one. You would never know that her heart is struggling.. it's just another miracle in her life.

Wednesday, August 4, 2010

Baby #3

Yep that's right! We are very excited to announce that #3 is on it's way!

Thursday, July 29, 2010

Feeding clinic!

Every summer I forget how hot it really gets here. Then the heat comes and I clearly remember and I wonder how we'll make it though. I love being outside.. I would spend all day outside if I could so it makes me so stir crazy! It's hard to entertain my munchkins all day inside. Bela asks to go to the beach pretty much every day. I wish we could too Bela!

I had my IFSP meeting today, and for the majority of the world who doesn't know what that is, it's a semi annual meeting with a state worker assigned to Bela's case. Today we discussed Bela going to preschool on her 3rd birthday and it blew me away! She would still have to qualify for it, and both her therapist and her case manager didn't think she'd qualify because she isn't actually delayed in any areas. I'm getting her evaluated next month, and if she does qualify she'll start school in February! My baby! I do think it would be very good for her. Especially snack time. :)

In regards to eating, she has come so far. However, her quantities are still so tiny. How do you get a 2 1/2 year old to eat more when they are DONE! She is so dramatic. She'll take 6 bites of something and then say, in an extremely dramatic voice, Mommy, I'm SO full! She just says it to get out of her chair. She'd rather be playing. There are a few things she will usually eat a good amount of: noodles, pizza, mac and cheese, quesadillas, and sweet potato fries. Everything else just gets nibbled on.

BUT...I'm so excited because we have finally gotten our dates and are going to Tucson on August 24th, 25th, and 26th for a 3 day intensive feeding clinic with Marsha Dunn Klein. She's a fabulous feeding therapist who is very hard to get into, because she's so well known and because she spends most of her time traveling to teach others about her program. I am so excited! I hope it gives Bela a big nudge in the right direction. Her home therapist thinks she now has all the skills needed to eat, it's just a matter of increasing how much she is eating and drinking. Which is hard to do! So I think this is a great time to do this more intense program. It's like she's SO close.. she just needs to eat a little more calories at each meal and she could get her tube out!

My little painters... trying to stay busy.
Thanks for checking in with us!

Monday, July 19, 2010

3 weeks

Bela's cath has been scheduled for August 11th at 9 a.m, check in at 7 a.m. I'm so glad we're the first case. It's no fun having her hungry and not be able to explain why I can't feed her.
It's just going to be another couple days that I put myself in the "I have to do this, there is no other choice" mode and get through it. I count my blessings everyday to have had 2 hospital free years. Amazing! She is doing so very great right now, I know she'll just bounce right back, and hopefully have even better heart function after.

Saturday, June 26, 2010

my sweethearts

This is for no special reason in particular, it's just time. This is one of those just for me posts..:)
All about Benson at 41/2:
You still LOVE superheroes.
You newest obsession is Teenage Mutant Ninja Turtles.
You love to play outside, especially riding your bike.
You loved preschool and know all your letters and letter sounds and can write a few words, but you would not participate in your graduation. You stayed behind the door hiding when everyone else walked in the room. We were wondering where you were and you were nervous to come in. It made me smile because you're just like me. Then when it was time to say the poem I know you had memorized, you didn't say a word. Oh and you refused to wear your hat. But it was cute to me because it is just who you are.
You're so creative and imaginative when you play.
You love to make up stories and I could listen to them all day long.
You still sometimes confuse yesterday and tomorrow and I think it's funny.
Your best friend are Ethan, Jaden, and Eden.
I still have to buy pants with a built-in belt and usually tighten them all the way.
You love doing things with just Daddy.
You like to pick out your own clothes everday.
You like to make up words and then laugh at yourself.
It took you until you were 4 to finally be fully potty trained. You just simply did not want to stop playing to go. I'm glad that's over..
You like to eat with chopsticks.
You still love to dress up in super hero costumes, but not everyday like you used to. Sometimes you just need a cape and then you can imagine you're anyone you want to be.
You hate getting your hair done and having 'stuff' in your hair. It really bothers you and it's such a shame cuz you're so handsome when it's done.
You LOVE your sister and still always make sure she is okay if she's sad. Seriuosly, you amaze me with how kind you are to her.
If I put you to bed you always want me to sing "sweet little Benson".. you say "it's kinda a baby song but it's okay because it makes me happy".
You eat just about everything, but your favorites are probably peanut butter and jelly, potstickers, toast with honey, and ceasar salad. You are a great little eater and I am SO grateful that you are.
You could draw, color, and cut for hours. You even like to make your own books.
You love book of mormon stories.
You are sweet and compassionate.. you like to tell me that nobody is better than anybody else. You also tell me often when you see Bela's scar that you don't want anyone to cut Bela again.
I wonder when you will stop wanting me to kiss your owies when you hurt yourself. I'm so glad it still makes you feel better.
You teach me that learning is exciting and that there is something amazing in even the simplest things.
You're getting SO big, helpful, grown-up, and smart. It's exciting and sad for me at the same time.
You bring so much to our family and make us smile with your fun, sweet personality. You've always been so calm and easy and I am so grateful for your good natured little self. You are so loved little man, I can't begin to tell you how much.

Bela at 2:
You are truly amazing in every way. You're special, there's no doubt about it.
You have such a funny personality and you make us laugh everyday. You have so many expressions and we could sit and watch you all day.
You love to take baths and start taking your clothes off mulitple times a day yelling, 'Bath!'
Your favorite thing to say at the moment is "Look at that!" about everything! Your world is so exciting. It is becoming less of a scary place to you and you are much more comfortable with 'life'. You were very unsure about it for awhile and I don't blame you. It is just so nice to see you enjoying it more and more.
You still don't go to church with us because we want to keep you as healthy as possible. I miss you every week though and long for you to be in my arms at church.
You LOVE music. Some of your favorite songs are sweet little Bela, Old MacDonald, Wheels on the Bus, and Itsy Bitsy Spider. Hearing any of those songs always cheers you up.
You still do not eat everything you need by mouth but you have come SOOO far, and I am SO proud of you. Food is now enjoyable to you and it isn't a scary thing anymore. You just eat like a little mouse.
Your favorite foods are probably noodles, cheez-its, and yogurt.
You love your naps, but you go like crazy until it's time.
You love playing in the sand.
You like to go in the car, but not for very long. You're so excited to get in, then 3 minutes later you want to go home.
You love princesses and your pink ballerina skirt from Aunt Lauren.
You love the TV (too much). Your favorites are Dora, Caillou, and Diego.
You love books and to read, but like the car, you are usually only interested in a book until about half way through and then you want a 'new one'.
You don't like to be told no. You bury your little face in your hands and cry until I can't say no anymore.
You have angel eyes. Pure, sweet, and innocent. I feel closest to heaven when I'm with you.
You can say anything now and even use a few sentences, which is funny because you're so tiny.. 21 lbs tiny.
It's a struggle to get you to grow, but you are, slowly.
You will finally let the echo tech do an echo on you without screaming. It is a very nice change. And you are even getting much better about getting your blood pressure too.
You had your first doctors appointment a couple weeks ago where you didn't throw up from being so nervous. YEAH!
You are my greatest teacher. You remind me to be strong when I feel weak. You make me remember what is important, and when I look at you, it is easy to see who we truly are.
Sometimes when I hold you late at night when you are having a hard time going to sleep, I can't help but remember how hopeless we felt when you were first diagnosed. I can remember so vividly certain experiences we had with you, amazing and painful. You are here for a reason. I know that because you statistically shouldn't be here, and I have watched you pull through time and time again when you shouldn't have. You have been blessed and protected your whole life and it has been a priviledge to be a part of it all.
I can't express how lucky I am to be your mommy, and how much we love you.

Upcoming Cath

I'm going to try to end my blogging slump.. Not sure why my posts have been so few and far in between.
Lots has been going on. We saw Bela's cardiology team just one month after the last appointment I wrote about because it looks like she's going to need a cath in July. This cath was very unexpected for me so it has taken me awhile to wrap my brain around it and get used to the idea. I DON'T want Bela to be back in the hospital and under anethesia and be cut again and of course whenever there's possibility of something going wrong, it worries me to death. But Cath's are something that I'm told she'll probably need about every year of her life, so I better get used to it. So anyway, I'm not sure the exact date yet, but it will probably be mid-end of July, and it'll be here way too fast. They need to get some real accurate measurements to get a better idea of what's going on in her heart, and they will most likely balloon open a portion of her aorta that is too narrow and causing pressure build-up for her only good valve. The only issue is, Turner Syndrome causes the tissue in the aorta to be very weak, so they are cautious to say the least about doing this, but they feel it is best.
So that's that. Some good news...IF they are able to successfully stretch open the aorta with the balloon enough, we may be able to push back her big surgery a WHOLE YEAR! So not next summer but the summer after that. That would be fantastic due to the snail pace of her growth. If she had a whole year to grow bigger, I would feel SO much better! We'll see.

As far as other news, me and my babies are in California at my parent's house for 5 days, and guess what?! My parents are actually in their house! (they live in Brasil and only come home a couple times a year) I feel like the luckiest girl in the world to basically have both my mom and dad to myself for a whole 5 days! I miss them so much being so far away. It's always SO nice to be home, and to have them here is just wonderful. Not to mention this PERFECT weather.. I just want to sit outside all day long! Love it!

Here's a couple pictures from Tanner's little bro's wedding day. It was such a great day and I couldn't be happier about my new sister!

Wednesday, May 12, 2010

Yesterday's appointment

Yesterday Bela and I spent the day at St. Joe's. When I pulled into the parking garage she cried, 'no, no, no'. She was NOT happy to get her vitals done. She took off down the hall, threw a tantrum, then threw up everywhere. After awhile she calmed down enough to take her pressures. She loved her echo and happily watched Elmo during it, and smiled up at Gary who could sing along to every song.
The verdict: Tricuspid valve regurgitation looked slightly improved! Yeah!
Aortic valve still looked bad, and her upper (arms) and lower (legs) pressures were 18-20 points different, and they worry at 20-40 points different. Her aortic narrowing is causing the difference. I was told signs to look for if the pressure increases. I'm prepared, and I'm not worried. They may have to do a cath to balloon open the aorta if problems do arise before next surgery, but hopefully we won't have to do anything until then and combine everything with the surgery. Balloon the aorta, work on the valve, and do the Fontan surgery.
Surgery is tentatively scheduled for next summer, about a year from now. It was weird to hear that they sat down and discussed her case and came up with a date, but great to hear that it isn't for another year!
Her weight was up over a kilo! About 3 pounds! We exchange progress eating orally for pounds gained, but it'll all work out in time..

Overall it was a good appointment. I am so grateful for the care she receives and the investment they have taken in her and her little heart. She is loved there and we so love them..

I talked for a minute to a 29 year old woman sitting in the waiting room. She had just had pacemaker wires put in over the weekend. She had had 4 open heart surgeries during her life and said she's going strong. She said 'your daughter has a much better chance than I did when I was born, and I'm doing great." I struggled not to cry and told her thank you. Sometimes in between appointments I want to forget that there are things going on inside Bela's heart that are terribly wrong, but appointments force me to face it all and bring all my fears right up to the surface. It's always overwhelming to me, and I was grateful for her encouragement.

Tuesday, May 4, 2010

Photo session...

...capturing my sweet, creative 4 year old and my adorable, miraculous 2 year old.

silly babies

Bela's birthday