Bela Girl: thoughts...nearing the end

Monday, January 17, 2011

thoughts...nearing the end

Today I was having trouble staying positive and patient as I near the end of my pregnancy. It's like this switch goes off when your getting close and you're no longer able to just enjoy it anymore.. Well.. that and you do get tired of the back pain, peeing every 20 minutes, heaving a giant belly from side to side trying desperately to just fall asleep, being out of breath from walking up the stairs, not being able to bend over... I could keep going but... I'll stop. I'm just ready to have a functional body and energy level back again.

....BUT.. how amazing is it that I grew a baby inside me? There's a sweet, full term baby girl getting all ready to come out and meet us. It's amazing.. it never gets old. Benson changed everything for us, then Bela came along and changed everything again.... all for the better. I can't wait to bring another into our family, to be loved and adored by her brother and sister. At this point in my pregnancy with Bela I was going to the dr. every other day to make sure she was still alive. It was painful. There was not much to be excited about and my heart felt so heavy. Every night when I'm (trying to) go to sleep, I put my hands on my tummy to feel her and get that little rush of excitement that something so BIG is about to happen to us, and that it will all be okay this time around..

I can't wait.

11 comments:

cici said...: This time around everything Will be better than o.k.
God Bless you all with a happy and safe delivery.; January 17, 2011 at 11:28 PM
The Silly Nilly Family said...: That's awesome. Congratulations! Love seeing little Benson and Bela's pictures, and it will be so fun to see your new little one too! :); January 18, 2011 at 5:13 AM
Jamie said...: I was just thinking about you and wondering if you were still pregnant. I just had my baby boy last week. I wish you an easy and exciting labor and delivery. Can't wait to see pictures. Good luck with having 3 kids (it's kinda crazy) and enjoy your new baby girl. She'll be here so soon.; January 18, 2011 at 4:43 PM
Matt and Jennae Porter said...: Yay... can't wait to meet her! She will be here before you know it. What a wonderful blessing for your family, once again. Make sure Matt is part of Tanner's mass text announcing when she's born!; January 19, 2011 at 12:36 PM
Angie Milne said...: can't wait either!!!; January 19, 2011 at 2:57 PM
Nicole said...: So excited for you and your family. Can't wait to see pictures of this new baby girl. I'm sure she'll be beautiful just like Bela was/still is :); January 21, 2011 at 8:33 AM
Dallas and Krista said...: can't wait to meet her. it will be soon enough- rest your little heart and tired body.

so not what you wanted to hear i'm sure :); January 21, 2011 at 10:35 PM
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The Joslyn Family said...: Good Luck Ave! Can't wait to hear about your new arrival.; January 22, 2011 at 3:52 PM
Victoria said...: This is a beautiful post. It seems like the Lord has had a lot of miracles laid away for the Milne family, and this is one more. Congratulations.; January 22, 2011 at 6:06 PM
The Ridgway Family said...: Avery, I have been thinking of you a lot lately. I know exactly how you are feeling as you get ready to have your little one. I knew that Kanyon was healthy, but I was still anxious and nervous. As you mentioned in an earlier post that you worry more, I did worry more about him, dumb things really, but I think it was from our past experience. She is going to bless your family in so many ways and put your heart at ease to have a "normal" baby again. Enjoy these last few days as much as you can because the fun will really begin when she comes.

Love, Keisa; January 25, 2011 at 7:35 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.