Bela Girl: Home

Thursday, March 15, 2012

Home

It's been wonderful to be home.. It's just crazy to me that we are done with the Fontan. I can't say how amazing it feels to say that. It's hard to describe what it's like to wonder and worry and speculate and dread a surgery for 4 years. I had no idea what to expect since she was so little with her previous surgeries. And I can't believe 8 days later we were home. Done. It's DONE! Feels soooooo good.

The last few days have been a little rough for Bela. She is restless and uncomfortable most of the time. It's just going to take time. It's hard to be patient for her to come back to me because she was just too good before... I have to remind myself that it's only been 10 days. I just miss her.

She wants to be held and dosn't want to walk too much. She isn't sleeping too great either. She threw up a couple times yesterday but didn't throw up today at all. I think she just needs to get all the drugs out of her system. She got a ton. She's on a ton too, can't wait til some of these are gone! This is just her 9 pm meds. Her schedule is crazy again, but lots of these will be gone soon.

As far as her arm and hand, I am feeling very hopeful because we're seeing her use it more. Today she was able to make a thumbs up with it! Her NP was finally able to give us a possible cause.. she thinks it may be peripheral nerve damage from her arterial line. It's uncommon but can happen. All that matters is that it will come back to full function. Such a scare, but it's all going to turn out ok.

Her heart is being monitored 24/7 with a portable EKG monitor for the next 3 weeks because she was having some rhythm issues. I'll find out how she's doing when we have our first appointment on Tuesday.

It is so good for her to be home. The real healing and recovery happen at home. I am so happy that she can be back with Benson and Ruthie. She just needs to realize her happy little life will go on and I think she's going to be just fine. I love her to death, it's hard to see her struggling, especially since she was doing so stinkin good. But we'll get back to that girl, even if it takes a little while.

Thank you for your help getting through the last couple weeks. We are blessed with the most amazing family and friends. We've felt your love and are so grateful for it. Thank you from the bottom of our hearts.. especially Bela's. :)

13 comments:

Katie said...: Amazing!!! So happy Bela is home and doing so well just post-op! Yes, it's such a relief to have the Fontan over with. We're coming up on our year anniversary and it's been the best thing for Maddie. She is as healhty as she's ever been :) Congrats to you all and heart hugs!
Love,
Katie & Maddie (HRHS, 4 yrs., Washington); March 15, 2012 at 9:41 PM
Lila said...: Been thinking so often of all of you. Recovery just isn't something you can hurry. Maybe that is good that we can't. It takes time to mend something perfectly. You have all been so patient, a resounding lesson for all of us that watch and wonder with you.
Love, Lila; March 15, 2012 at 10:13 PM
Anonymous said...: If only I could fast forward to next week... :) It'll be a great feeling to have the Fontan in our past. That little Bela has had quite a traumatizing week, and I'm sure she is so happy at home. I hope things continue to go up from here! Thinking of you guys!; March 15, 2012 at 10:17 PM
Deborah said...: you guys are amazing! i'm so glad to hear that you are back home!! little bela is my hero :); March 15, 2012 at 11:27 PM
Anonymous said...: So glad to hear that Bela is home...been praying for her and you. It does take a lot of time for them to recover from something so traumatizing. I think the emotional part takes longer than the physical. Will continue to pray.; March 16, 2012 at 6:39 AM
Ali said...: Everytime I read your posts, I have tears streaming down! I can't tell you enough how amazing and inspiring you are. She will be back soon and every happy moment will be even sweeter.; March 16, 2012 at 8:55 AM
Andrea said...: You are amazing Avery and what an icredible little spirit Bela is. Glad things are going well and that you are home and can be together as a little family. You are such a great example to me.; March 16, 2012 at 11:32 AM
Sean said...: Hi Avery, I served in BH when your Dad was President and I am also friends with your mom on FB. She has kept us posted on little Bela. I have a daughter the same age as her. She is always asking me how Bela is and loves hearing updates. She is so happy that Bela is home and is feeling better. We will keep you and your family in our prayers and look forward to the future updates.; March 16, 2012 at 1:20 PM
Auburn said...: Amazing! Still can't believe she is home. I pray that her spunky little self will be back before we know, and I pray that you'll be able to get through this too! You all are amazing!; March 16, 2012 at 3:02 PM
Unknown said...: I was told about your story from a good friend and told to go visit your blog. As I have read through your blog postings I am truly touched at the spirit Bela has. Bela and your family is inspiring to me and many. Thanks for sharing your wonderful story that gives me hope for everything.; March 26, 2012 at 10:39 PM
Dallas and Krista said...: Just thinking about you tonight. Why have I not come to see you since you've been home? Please forgive me? Hope all is well still. Loves.; March 28, 2012 at 8:55 PM
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Anonymous said...: Omg I'm so happy to share this!!! I've been thinking I've lost my mind and it was some mental case. I myself had my tubes tied after my 3rd child. I have a condition that makes having babies so hard on my body. About 6 months ago I too would feel something like "kicks" of course I thought I was out right crazy. I never spoke to anyone about what was going through. How could I? They'd think I was nuts!!! Well my periods have been getting so bad that I reached out to my best friend who also had the operation to see if she had experienced any symptoms with her periods since! Of course we were in the same boat. I broke down and told her I almost felt at times I was pregnant I felt so crazy just typing this out to her. I was beyond nervous she would think it was a nut case. To my surprise she also had similar symptoms. We both are researching what this could be. That's when I came across this website on Google of dr Itua Herbal Center. While scrolling through these comments I stumbled upon how he treated HIV/HHerpes also helped a woman to get pregnant with his herbal medicines. When I read what he had been going through I just broke down and cried for the longest time. Finally I got a help that I ever wanted I and my friend purchase Dr Itua herbal medicines and we both used it which was really effective it cure my cramp issues so I will recommend anyone going through some health issue to contact Dr Itua Herbal Center on E-Mail : drituaherbalcenter@gmail.com Or Whats-App +2348149277967 He cure HIV/Aids, Herpes, Cancers, And other stubborn disease make sure someone here talk to someone about this who is going through the same thing as us. Ty for sharing. I now know we're not alone!!!; March 20, 2021 at 9:24 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.