Monday, September 29, 2008

Slow progress..

So slow...if you blink you might miss it. But it's definaltey getting better, and we'll take every little bit of progress that comes Bela's way...
Anyway, I keep thinking I'm going to get some time here or there to write a good post on the happenings around here, but the time just never seems to come. So I'll use whatever little time I have left before Bela wakes up to write a little something. It's been a hard, sometimes very frusterating week. Bela is supposed to be getting better, but somedays it feels like she's getting worse! She still continues to throw up, about the same amount if not more than before. We took her off formula because it got to a point where she just wasn't keeping anything down and she seems to do much better with just breast milk. I add a little rice cereal to the milk since she should be eating that now. She throws up still, but seems to keep much more of it down. I feed her every hour for 15-20 minutes so it seems like its all I do! Especially when she throws it up...I get her cleaned up and do it all over again. We have seen improvements in the last few days since we made the change so I hope she can keep that up. We got her off all her medications that she was addicted to just a few days ago and I've noticed lots of improvements since then too. She still isn't sleeping very good and I'm sure it has a lot to do with the throwing up since she is never full and content. She takes maybe two 15 minute naps all day. I try soo hard to get her to sleep, then 15 minutes later something wakes her up, whether it's to throw up or because she's in some kind of pain. I hope that gets better, for all our sakes. She just likes to be held and walking around, so it gets very tiring, and by the afternoon she is just so exhausted. She is still sleeping okay at night, she does wake up and throw up sometimes, but she sleeps pretty good. We're heading in the right direction, it's just a long road...
It's still just so wonderful to have her here, although she is my drama queen and is extremely high maintenance, she is an angel and we love her to death. She has the ability to just comptletley melt your heart with her smiles..
We have our second apt. with the cardiologist tomorrow since the surgery and I hope we get all good news. I think we will...she seems to be recovering little by little. Her coloring looks much better and her breathing sounds better too. She paralyzed a vocal chord while intubated so she still sounds hoarse, but it'll come back on it's own in a few more weeks. She probably won't have gained much weight from all the throwing up, but as long as her heart function is good, all is well. We'll work on the feeding issues.
SHe's started some therapies, but they don't do much work with her yet since she is still in recovery and has some serious stranger anxiety...wonder why. HOpefully we can start speech therapy soon and get her eating even a teaspoon orally. That would be a start!
So we're doing survival mode most days, but we are getting through and are being blessed along the way with some very sweet blessings. Thank you for being concerned with us, lots of people have called and asked how things are since I haven't posted. It's really hard to get around to updating when she dosn't sleep, so I'm either feeding her or holding her pacing the house... sitting does not work for her. It'll be a great day when I can sit down again..:)
Thanks for all your continued help to us...I know it's been 7 months, but we are still grateful for any help we can get!

Hey...that turned out to be a pretty lengthy post! Til next time, here's some pictures of the last couple weeks...

this is probably my favorite picture...she loves her brother..

and her brother loves her. It is so nice to not be so scared to let Benson get close to her for fear of her getting sick.

I realize there are a lot of bumbo pictures, but she is just too darn cute in that thing.. She only lasts for about 3 minutes before she decided she'd like to be held again, but it's a start..

My brother Jordan and his wife Lauren welcomed their first baby into the world last Friday. I got to be there for the birth and it was a very emotional experience for me. He is just beautiful and perfect. I was amazed the whole time at how calm everything seemed to be and I decided that I'd like to do it that way next time I deliver..:)

Benson likes to be 'just like Daddy!'

Her tiny little hands and feet... But look! Her arms are filling out a little! :) I love how she looks posed for these pics.

Tuesday, September 16, 2008

One week home

I've had lots of worries on my mind this week. I think I had this plan in my head that after we came home from the hospital after the Glenn that things would be 100% different. But I forgot about that fun period that lasts about 2 months called recovery. Normally we're in the hopsital for all of the recovery period and then some, but this time we are definatley doing the recovering at home. Which is good, and bad. It's hard to watch her go through withdrawals. She shakes and vomits and just looks downright scared. We came down on the dose a bit and it made things worse, she has been throwing up every feed since, so we have to go back up.. It's a little discouraging since we don't get our Bela back until those meds are gone. IT's okay though, we just have to move a little bit slower. Her breathing has been very loud and it seems sometimes like she is trying so hard to breathe. Her oxygen sats have dipped into the 60's when she gets really agitated and she turns an awful color. So we took her in today and we actually had some good news. Her heart function looks great and there was no fluid around her heart or her lungs. So they are all just normal recovery things that will just have to get better over time. I was glad to hear that they are normal and expected. She will just need her time, probably about 2 months or so to be all better.

And then there are the meds!! 10 of them at 6 am, 7am, 8 am, 9am, 12pm, 4pm, 8pm, 9pm, 10pm, 12am, and 4am. Around the clock. The nurse told me today I looked tired and I said, 'have you seen her med and feeding schedule?' But her meds will slowly be weaned down and eventually she should only be on about 3 or 4.

I am so looking forward to finding some sort of normal groove to my life. We don't have to go back to see the doctor for another 3 weeks...that seems like forever!! Hopefully Bela will allow that... :)
Some things I'm looking forward to:
Finally getting around to potty training my almost 3 year old.
Being a full time resident in my home now instead of a visitor from time to time.
SHOPPING for Bela!
Holding a calling in church.
Sounder sleep, and more of it.
Weaning meds.
Getting rid of the darn, beeping pulse oximeter.
Doing another swallow study and hoping for good results to be able to start bottle feeding again.
A stronger baby with every passing day.
A lot less stress.
Seeing my friends, hopefully I still have some of those :).
Spending more time with my boys.
Less vomiting, more growing.
Going back to church with my family of four.
Doing my own grocery shopping.
Being able to go outside and not die.

Here's Bela Boo this week...I must say she is looking fabulous for 3 weeks out:

This is Benson sleeping in his "Bat suit" as he calls it. Daddy brought it home with him from work a few days ago as a surprise for Haloween and Benson hasn't taken it off since, except to wash it once. He even wants to sleep in it.

This is what happens lately when I try to take a picture of Benson:

At least I got one! I can't get over how dark Bensons eyes are and how light Bela's are. Some kids come out and look like clones of their parents, not mine!

We're so blessed and are very grateful for those blessings. I'm so humbled and touched at the comments that are left on our blog. I am so amazed at how many lives have been touched in some way by our sweet Bela. We know that the Lord is using her and this experience to teach us and to teach others about patience, love, understanding, compassion, strength, endurance, and the beauty of life, now and in the life to come. I hope that each one of you that reads this has been able to see the hand of God in all this and the love that He has for each of his children. Prayers really do get answered...
Of all the things that I know to be true, I have been most grateful to know that I have a Savior that suffered and died for me, not only for my sins, but also for the pains and sorrows of this life. Through him, I have come to learn that we can recieve strength when we seem too weak, comfort when it gets too hard, and help when our burdens just seem too heavy. I have prayed many many times for Him to take away Bela's pain and suffering because He has already felt all that for her. And each time I do, I feel so much peace that He is doing just that. How blessed I am to know that!

Thursday, September 11, 2008

Some of you might already be aware of this, but we are home! We got discharged last night and have been busy adjusting to life at home again with new meds, schedules, and drs orders, but we've been LOVING being together. I woke up this morning and immediatley smiled, knowing that both my babies were asleep in their own beds in their own rooms. Tanner and I are actually still having a hard time believing that this is all real, that we are really home after two short weeks. What was supposed to be her most difficult surgery and recovery actually turned out to be the shortest stay we've had so far. I feel like someone is going to call and say 'just kidding' any time now and we'll be back in room 10 in the ICU.. I just can't believe how well she did and how fast she recovered from such a major surgery. We weren't quite sure what to expect, but this was definatley not it. The only way to explain what happened I'm sure were the countless prayers offered on her behalf and the many tender mercies of the Lord in blessing her with healing. I have seen His power throughout her short life many many times. There have now been 8 separate occasions that her life has been preserved. That is extremely humbling. I am just so grateful for the blessings we've been given and for the miracles that have taken place.
Bela is still going through some withdrawals so we have her on a month weaning schedule at home. She's not back to herself yet, she's very sleepy and when she is awake she is very spacey, but we hope to have the real Bela back very soon. I can already tell that she is stronger though.. She has thrown up one time in the past 4 days and that was because she got two feeds too close together. Its been amazing.. all I have ever known of Bela is at least 3 huge throw ups a day, each one consisting of about 3 or 4 seperate throw ups, and so I'm not quite used to none yet. I think she will grow so much better now.. YEAH BELA!!
I'll post some pictures of her home soon...thank you all for your prayers and concern on our behalf.. we love you.

Tuesday, September 9, 2008

A Picture Post

Since pictures say a thousand words, I think these will convey to you HOW MUCH BETTER our little Bela has gotten over the weekend! Sunday and Monday have been very tough withdrawal days for her, but today they seem to be getting a little better. Probably because yesterday they decided to give her more meds for a couple days and then try to slowly wean again. She couldn't handle coming off them the first time. She couldn't stop her little body from shaking and kicking, her eyes were plastered open, and she is doing this weird hacking, gaging thing and keeps throwing up her feeds. It's been really hard to watch her go through them, but they are definatley a part of heart surgery. After you get your heart fixed, you go through drug rehab. So now we just work on getting little miss Bela off her drugs (we'll probably still come home on some and continue weaning from here), and then get feeds figured out and we'll be able to come home!

She had a lung profusion study done yesterday and it looked great!! Better than they expected it to look I think... They were worried about her left lung profusion, and it actually looked even better than the right lung! Go figure...

I think she's been held nonstop since's too hard to put her down. We all take turns and she is loving it. It's been a great weekend, full of lots of progress. She got her oxygen cannula off and her central line out of her neck (you can see it in the first picture of's a nasty little thing). All her meds are off now execpt her home meds and two that she is still trying to come off of.

We got this adorable onsie from some friends of ours on the floor. They have a little girl one month younger than Bela that was the second hybrid case after Bela. SHe will be having her Norwood/Glenn procedure done on Thursday. Please add her to your prayers this week because little Addison already had a different surgery a couple weeks ago that didn't give the results they'd hoped for. So now they've decided she needs this surgery instead, so she has gone through more than she needed to. She has just almost fully recovered from surgery, only to go back in to the OR for an even bigger one. They are an incredible family.. Addisons story is at Thank you!

Saturday, September 6, 2008

Sleeping Beauty

Dad here... Bela has had another great day. She has slept most of the day and for the most part has remained pretty calm.

We found out today about 2 other HLHS and Turner's babies that were born and passed away within the last month or so. We count our many blessings and were again reminded that Bela is an absolute miracle. I am constantly asked by friends, neighbors, and even business associates, how she is doing. I usually struggle to explain what she has been through or is going through that day, but now I know my response, MIRACULOUS! Today they took out Bela's art line and hopefully tomorrow the central line will get taken out. Another good day.

Avery was able to hold Bela for the first time in 11 days. Tomorrow will be my turn.

Friday, September 5, 2008

Progress, progress

First and foremost...The tube is out!!! For awhile there I was a little nervous about reintubation, so I didn't want to post that she had gotten it out, only to repost an hour later saying it was back in. But it has now been out since around 5 pm last night, so it is out for good!! They were keeping a very close eye on her last night because she sounded pretty wheezy and was very agitated, but she settled down and pulled through once again! Last night we kept trying to give her her binky but she didn't want anything to do with something being in her mouth again, but today she has remembered what it is and how much she loves it. I don't think it's been out of her mouth all day. She finally got to eat again, although it's going pretty slow right now. She went without eating from yesterday morning at 6 a.m. until about 11 a.m. today.. Terrible, I know. But she was soo good about it. She is always good about everything she has to go through. She's made up of something very special.

They also took out her now I get to change her diapers! She's come off a couple of her meds and they are coming down on the others. By tomorrow she will hopefully be able to get off most of her IV meds and switch to oral meds so that her central line can come out of her neck. Since it is a central line (close to her heart), if she were to get an infection in it it would be bad so they like to get it out as soon as possible. I'm obsessed with seeing things get taken off her....It's one step closer to holding her again! Once the breathing tube went so did two other large machines and monitors, including the one with the dumb sticker that was on her entire forehead. I was so excited to see that go! Now I can see her entire beautiful face again. She just looks wonderful today.

So now's the time that really gets busy, as if it hasn't been busy enough. It gets harder and harder to keep her happy when she is fully awake but can't get off her bed that she has already been laying on for 10 days. At least we have a TV in here and that will occupy some of her day. This is also the time that everything get's better too. They seem to improve so quickly after the tube is out and I get to have my little girl back. I'm so excited for her to be stronger and feel better I can hardly stand it! I'm so happy that she'll be able to experience life as a normal baby and stay far away from the ICU. I can't wait to get home and practice eating, grabbing, and rolling becuase she was getting sooo close! I'm just so excited for her to finally just be a baby for awhile.

She has had a great morning and is resting very comfortably, thanks to the food in her tummy now. She is getting an echo right now and she hasn't even budged for it.

My mom left today...:( Always sad for me since she is soo much help. I have the two most incredible, selfless mothers that have been constantly 'on duty' for an entire week and a half now. I could NOT have done this past 6 months without them. It always amazes me how much work my two kids are! They manage to complelety wear out 4 adults every day. One of them is a little high maintenance though... just a little. She is worth it all though..

Tuesday, September 2, 2008

The ups and downs continue, but for the last 20 hours or so she's been a little angel. She hasn't been naughty at all... I told her that even though she dosn't feel good and she might be angry and confused, it's very naughty to just hold your breath until you turn blue. I really hope she listened and is done with that.

They've come down some on her sedation and every now and then she'll open her eyes and look around for a few minutes before drifting off back to sleep. She isn't getting as angry or agitated as she was before when they do their assessments.. Please, please pray that she will continue like that instead of getting so mad she refuses to breathe and has more of her little episodes. They said if she has a good night tonight, they can start weaning some of her ventilator settings and GET THAT TUBE OUT!! I'm so ready for it to be gone beacuse I miss my little girl so much! I miss seeing her eyes and her smile and seeing her kick with excitement. It will be a very slow weaning process I'm sure, but anything is better than nothing! I think she really scared the docs (and her mommy) so no one has wanted to push her too much.

As you can tell from the picture, she looks TONS better today. She has gotten off most of the fluid and so her face looks back to normal almost. She dosn't seem to be in as much pain today, and I think we've rounded a corner and gotten past the worst.

Everyday that she makes some progress and looks a little better is such a blessing, and we are overwhelmed with gratitude and happiness that she is fighting so strong and is still here. Today I feel like shouting, SHE'S DOING IT!! SHE'S OVERCOMING EVERYTHING THAT WAS SUPPOSED TO GET THE BEST OF HER! I know that it is the hand of God blessing her little body with His power. He has never left her, or us, and has continually strengthened us all with His love. I'm honored to be her mommy and to be a part of this miracle from above.

Monday, September 1, 2008

Sleep over at St. Joes

Dad here... Avery and I both spent the night at the hospital. I won't complain because Avery does it every night and doesn't. I always tell Avery that someone is going to creates a Marvel super hero character after her. She is amazing!

Right after Avery posted last night, Bela's oxygen saturations dropped and she clamped against the resperator. She turned really blue and they had to override the resperator and manually give her breathes. My mom and brother were here to experience a glimpse of the anxiety that we go through. It was relatively mild compared to other times, but nontheless it stressed us all out. She had two more of those episodes during the night. Aside from the fact that we constantly worry about Bela, sleeping here is not very accomodating. I would like to compare it to sleeping through the night with your alarm clock going off every five minutes expect that the alarm is associated to your daughter and you can't just press snooze and go back to sleep without making sure she is ok. Bela is calm at the moment and holding mommy's finger.