Bela Girl: January 2012

Sunday, January 22, 2012

Cath and lately

It's been busy around here. Bela's cath went really well. As well as it could've gone probably. I stayed home with Ruthie in the morning and Tanner took her and actually sent her off before I got there. Normally, that would've never been ok with me, but I have to admit that it was actually so nice to not be there for that part. They gave her versed before they took her back which made her totally loopy.. I got some great video of her as happy as she could be. Tanner said she just waved bye to him and that was it! She came out of anesthesia so much more calm than last time too, and woke up much quicker. She was so thirsty she chugged her sippy cup of water, then threw it all up but immediately wanted more. She was not happy when she had to wait. We got to come home that night and we were all so glad to sleep in our beds.

Labs drawn at the cath came back with crazy thyroid results, possibly what was causing her lack of appetite and tiredness. We've been changing up her dosing and trying to get her back in the normal range. I took her to get her blood drawn last week and her TSH was still way too low. I have to take her in again tomorrow and hopefully we'll see some improvements. I think we will...the last two days I feel like I've had my Bela back. She had a fabulous day today, was her usual funny, happy self that I havn't seen in a couple months. I felt so happy today!

We met with Dr. Nigro her amazing heart surgeon on Friday to go over the details for her surgery. While some of it went over my head, I did understand perfectly when he said her oxygen sats should be in the 90's when this is over and possibly close to 100 in the months following! I'm so anxious for her to feel the increased oxygen and feel more energy as a result. Beth also said that regardless of weight issues and thyroid issues, heart wise she is in great shape going into this surgery. Her pressures are low and her function continues to be nice and strong. Music to my ears... hearing that has kinda given me a high all weekend long! I needed to hear some good news! Dr. Nigro is confident he can repair her leaky Tricuspid valve too and that she'll do just fine during the surgery. It's the recovery that can be so hard... BUT, we'll deal with that one day at a time when that time comes.

We also decided to put her G-tube back in to give her some help with her nutrition. She hasn't been eating great, and it'll help her be stronger going into surgery and help her through the recovery as well. She has good days and not so good days with eating, and this way, we can help her out a little on those not so good days. She's trying her best, but some days she just dosn't feel good enough to want to eat much. I was very against this at first, but in the last week I have had so much clarity and reassurance about it and I know that it's the right thing for her.

So the plan is to get her thyroid back in balance, get the G-tube in this week, and get her strong and ready for a March 5th Fontan procedure and tricuspid repair. Piece of cake, right?! I'll be happy when April comes around..:)

Monday, January 9, 2012

2012....

I feel a little bit like I did before Bela was born...waiting and anticipating something that scares the heck out of me. I've know that 2012 means Bela's 3rd surgery. It has been nice to have this break, but now it's time (sigh). Bela goes in tomorrow for her pre-fontan cath. It's her 4th cath, but it never gets easier for me. Hopefully it'll be quick and easy and they'll get a really good idea of what they'll need to do during surgery.

I'm not sure what is going on but Bela hasn't been herself the last few weeks and anyone that knows her can see it. We took her in a couple weeks ago and she had an echo that looked normal and drew labs that also all came back normal, but... She is much more tired and lacks the desire to do much of anything besides read or watch movies. If we go on an errand or go outside she lasts a few minutes and then asks to go back home. So we havn't been doing too much lately. I'm not sure if she just keeps getting sick back to back (she is constantly snotty) or maybe she just needs the surgery. I'm hopeful that the Fontan will at least make her feel a little better? I always wish I could take her load for her sometimes, or just for a few moments feel how she feels, so I knew what it was like. I wish I could let her have my whole, perfect heart from time to time so she could go outside and run around and keep up with her friends.

Lately I feel kinda stuck in my own life.. I feel paralyzed sometimes by my worries. I don't really know how to describe it, but when she's struggling, or when I think too much about her surgery I just sorta function at half speed. I need the strength I get from getting on my knees frequently.

So 2012.... here we go. Please be good to my baby girl...

Twas the night that you joined us...all eyes were on earth.
Awaiting with joy for a most special birth.
The angel's stood ready...for each need and care,
But all of them knew... that the Lord would be there,
And I labored on... and daddy was scared,
We waited...and wondered... and hoped we'd prepared.
We knew you were special...but so very sick,
Yet hope had grown in me... with every kick.
And soon it was time...into this world you came,
I heard a soft cry... then I called out your name....
And God held your hands...while the angels stood by,
Since I could not hold you...they hushed your soft cries.
One small angel looked to the father and smiled,
"Can you truly teach hope... through such a small child"?
"An infant so helpless...a baby so new...
"Oh please tell me Lord...is this what you will do"?
God looked from the angel...to the baby's sweet face,
"Through her my young charge... they will learn about grace".
"I penned this child's journey...quite a long time ago,
"And through her great courage...such true love will grow".
"Every hair on her head has been numbered you see.."
"It's my hope that through her... they will learn to see me.
"Oh my little one with a special heart..." "Great love will see you through.."
"See look that is your family..""They've been waiting for you.."
"I send you to their waiting arms...for a time we'll be apart.."
"But I'll always be with you...for I live within your heart.
And so we held you in our arms...And thanked our Lord above..
In you...we see the miracle,of His undying love.
So when it's Christmas morning, And I watch my children play,
I'll need no great reminders, For I see my gifts each day.

Stephanie(Mommy to Braeden, HLHS)

From the beginning:

When I was 18 weeks pregnant I was ecstatic to find out that I was having a little girl. We would call her Bela. Just two hours later my OB called to tell me they suspected a problem with her heart, most likely a VSD. After researching that, although I was terrified I knew she had great chances of living a very normal life. So I was sent to get a level3 ultrasound to get a clearer picture. After an extremeley long ultrasound, 4 doctors came in to deliver the news that it was not a hole in her heart, but rather a severly underdepeloped heart. It was called hypoplastic left heart syndrome and she literally had half a heart, the weaker half. It was the most complex and severe heart defect an infant could have. They then told us that her femer bones were measuring 2-3 weeks behind and that she most likely had a chromosome issue as well. They told us that things did not look good for our baby and her chances of living were slim to none. They spoke of abortion. We were going to lose her. It was devastating news and I felt like someone had ripped my heart out. As I struggled to get my body to stop shaking, they performed an amniocentesis. 3 days later we found out she had Classic Turner Syndrome. The first reactions from doctors were not positive. 99% of babies diagnosed with Turner syndrome in the womb spontaneously aborted by 24 weeks. No one we met with had ever heard of a survivor with these two conditions together and could offer very little hope or support. We met with a NICU doctor who suggested abortion. Finally we met with the heart team at St. Joe's. Dr. John Nigro, her surgeon, told me that my baby would be fine. Those were his exact words, I will ALWAYS remember them. It was my first glimpse of hope. I continued to see them regularly as well as my high risk obgyn, and little Bela was not going anywhere..

Bela was born on February 29th 2008, leap day, and was beautifully pink. I was in love, but so scared. She was whisked away and given medication to keep her alive. That night she started to have periods where she would stop breathing so a breathing tube was placed in her throat. I wanted to be by her side every second, I didn't know how many I would get. I was in awe that she was surviving, even if it was just a few hours or days. Her first big hurdle to jump was her first open heart surgery, the hybrid procedure. She was the 3rd baby to ever receive that procedure at St. Joe's, and the first to survive it. She came through with flying colors. Her body got stronger, she fought hard. We took her home two weeks later, another miracle. We had two crazy but beautiful weeks with her at home, then she came down with a horrible infection in her inscision. She was taken back into the OR and opened up to clean out all the infection. After a month, she came back home. Three weeks later, she developed double pneumonia and upon assessing her after she was admitted to the hospital, it was determined that she was in full heart failure. It was another miracle that she was still alive. It took Bela another month to pull through and get better. Then we had one month to get as much weight on her until her next surgery. All we did was feed her, all day long. She reached her goal weight of 11 pounds the day before her surgery. On Aug. 27th she underwent the Norwood and Glen procedures together. We were told that it would be a tough surgery and would be a very difficult recovery. 8 very long hours later, she finally came back to us. She was puffy and blue and did not look like my baby. I felt so weak. During the critical recovery time she had severe hypertention and clamped down several times and had to be bagged to get her heart and breathing going again. It was the scariest week of my life. I felt like I couldn't shut my eyes or something could happen. She slowly made improvements and was finally able to come home a month later, when she was 7 months old. She was on a month long weaning schedule to get her off Ativan and morphine, and it was a very tough time going through withdrawals. By about 9 months she was finally starting to live her life. She continued to struggle with eating so we were still using the NG tube. It was also at about 9 months that she decided she didn't want that tube in her nose. From 9 months to 12 months we reinserted her NG tube several times and day and by the end of those 4 months I was ready to check myself into a mental institution. I'm not sure what was more difficult, inserting the NG tube on a daily basis, or going through open heart surgery. It was that bad for us. It was finally determined that she was NOT going to eat, so I drove her to a GI surgeon and with giant tears, literally begged her to put in a G-tube NOW, that I could not put the NG tube back in one more time. She set up the surgery for the next morning and we said GOODBYE to those darn NG tubes after 12 longs months. Her eating has greatly improved, she loves to snack on most anything, but still depends on her g-tube (mickey button) for most of her nutrition.
We are grateful beyond explanation for the last 2 wonderfully challenging years that our miracle has been with us.