Bela Girl: I hate germs!

Thursday, August 20, 2009

I hate germs!

Bela came down with something again.. SIGH...
Despite her hospital time, I think the thing that delays her the most is how often she is sick. I worry about it a lot.. how much can one little body, one sick little body, take? It seems like we just get a couple weeks of health in between being sick. Today will be day 3 which is usually always her worst day. She was up last night from 2 a.m until 6 a.m. I stayed up til midnight to feed her one more time because she didn't get enough calories or ounces in the day, and then at 2 am she was crying. She just wanted to be held and was okay if she wasn't put back in bed. SHe was however wheezeing a little when she breathed and she had a nasty little cough that sounds too much like croup. I could handle it until about 4 and then Tan took over. He took her downstairs and watched TV with her and at 6 he woke up to her head right up next to his, sound asleep. So sweet..:)
I already had a cardiology apt. scheduled for today so we'll go in at 2 and see what they think. I'll be glad to get a look at her heart and make sure everything is okay. And I hope the scale is nice today!! We've been working so hard for some weight gain!
Hoping it's nothing serious and that she'll be back to feeling good soon! I just don't understand how she catches EVERYTHING?!?! Maybe we're getting too relaxed. The last three weeks we have taken her to church with us all three hours. Maybe she's touching too much stuff while she's there and we should go back to going home with her... I dunno. It dosn't seem like all the other heart babies get sick as much as Bela.. am I wrong?

8 comments:

Stu and Angie Milne said...: oh bels.. sorry she's not feeling good ave :( hope the news from the doctor is good!; August 20, 2009 at 10:40 AM
Carl & Mickie Yeates said...: You are such a fabulous mother to do all you do. Thanks for keeping up the blog. Bart had an ear infection every month his 1st year. And he was a Healthy kid. Take care of yourself and kiss Bela for us.; August 20, 2009 at 11:21 AM
Branton Family said...: I am so sorry Avery that Bela is sick. It does seem that whenever we feel we have made progress with Zach, we take another step back with him as well. If its not feeding issues, its congestion or breathing issues. Hang in there, I pray things will get easier and that you will have strength in the mean time to deal with all of the challenges. Keep us posted on how the cardiologist appointment goes. Ours is next Wednesday...Amy; August 20, 2009 at 11:42 AM
The Simmons Family said...: Bummer. I am so sorry that Bela is sick again. Some kids just get sick easier than others.

Owen has not ever been sick, other than heart sick. I don't take him anywhere and if we do, he stays in his stroller so he can't touch anything. I know this is overdoing it a little, but it's working. We also use hand sanitizer like it's going out of style. Owen actually asks for it now when we get in and out of the car. I know.. OCD.

On another note.. PRAYING that cardiology goes well. Bela's weight is up and there are no surprises.

I'm excited to see Dr Graziano on Wednesday and get the Gtube planned.

Andrea; August 20, 2009 at 12:49 PM
Katie said...: I think our girls are on the same healthy on/off days! Maddie is sick again too...started Sunday night. She was sick mid-July and now again, 3 weeks later! I hate it too and wonder as well if we're being to relaxed by going to the grocery store, etc. I'm in total fear of our oldest starting Kindergarten next week since she's sick enough and now new germs will be creeping home with him. The funny part is that she's the only one with the illnesses! The rest of us a fine. So it's a bummer and yes, their little hearts don't need to work this hard! They already do when they're healthy!!!

Here's the blog I wanted you to see...didn't ever hear from you thru email so here's Katelyn's blog address:
http://purelykatelyn.blogspot.com/

Love,
Katie (Maddie's mom, HRHS); August 20, 2009 at 1:46 PM
Melodie said...: Avery, Not for nothing... but I keep Scarlett as sheltered as possible (like Owen's mom with Owen). Scarlett only leaves the house to go to the pediatrician or to the cardiologist. I don't even visit grandma unless I'm 100% sure no one is sick in her house, and I make EVERYONE sanitize their hands around her. As a result (knock on wood), Scarlett hasn't been sick yet. I don't know if that's really the reason why... but maybe you might wanna consider not taking Bela to church with you, and watching services from home/internet somehow? Just a thought.

I've only taken Scarlett to church with me twice and I was nervous the whole time that someone might sneeze on her. Luckily, I can watch mass (I'm Catholic) from home tho.

I really hope beautiful little Bela gets better soon. It was nice meeting you last night. :); August 21, 2009 at 2:16 AM
Lindsay said...: This comment has been removed by the author.; August 22, 2009 at 7:52 AM
Lindsay said...: Taylor has a running nose & cough more often than not. It seems like once she gets over it, she catches something again. But with my 2 and 4 year olds constantly smothering her with attention- it doesn't surprise me. It does get old. And when she's sick, of course she doesn't eat well. So no, you're not alone in this!

Still...I'm sorry things are so rough for you!; August 22, 2009 at 7:55 AM

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.