Oh where do I begin? SO many people have asked me about Addie’s story, but I’ve been neglecting to take the time to write it all out because it’s so long and it’s ever-changing. I know it’s long, but if you really want to get to know our girl, this is her full story (for the most part).
When Mathew and I went for our 18 week anatomy scan at my OBGYN they noticed something was different during the appointment. We had just found out Addie was a girl, but that she had some sort of physical abnormality. We were sent to a maternal fetal medicine doctor who determined Addie had a sacrococcygeal teratoma (basically a tumor on her bottom). We also had genetic testing done through an amniocentesis and found out that Addie has an imbalanced translocation with her chromosomes. One of her chromosome strands from 1 and one of the strands from 5 were swapped with each other, and she had more of chromosome 1 and less of chromosome 5 than a typical person. What that meant for Addie- we honestly had no idea. With scans every other week, appointments and MRIs in Houston at Texas Childrens, and more, it was a rough pregnancy- yet I loved every minute of it.
Our doctor told me that Addie would need to go to the NICU straight after being born until it would be time to have surgery to remove her SCT. He also told me because of my pre-eclampsia and cholestasis that I would need to deliver at 36 weeks. Of course, Addie had other plans and came a few days before my scheduled c-section- August 26, 2014 at 5:48 am at 5 lbs 11 oz and 18 inches long…and she wasn’t screaming at the top of her lungs. I was so worried but thought maybe they had been so quick to take her that I hadn’t realized she cried.
Once we got to see her, she had a nasal cannula because she was having breathing difficulties- something I never imagined she would have. Tests would also reveal later that she had a PDA (a hole in her heart) that would need fixing. So instead of one surgery, we realized Addie would also need heart surgery.
Within her first 2 weeks of life, Addie had surgery to fix her PDA as well as surgery to remove her teratoma. After each surgery we realized what a fighter we had! She was so strong and resilient! During this time, Addie was also intubated. She needed a breathing tube down her mouth to provide oxygen to her because she had breathing problems that we couldn’t figure out. After several months of being intubated and not being able to extubate, the discussion came that Addie would need a trach.
We fought so hard and had many tears over her breathing issues because getting a trach would mean another 2 surgeries- one for her trach and another to have a g-button because trach babies usually can’t eat by mouth. We always knew that Addie would get anything she needed medically, and we knew she needed her trach, so in November she had her 3rd and 4th surgeries.
After a few weeks with her trach, Addie started taking milk from a bottle after lots of research on my part and a swallow study. It was such a huge milestone for her! I love being able to feed her and I know she enjoys her milk so much.
In December we were told we needed to go to Texas Childrens Hospital in Houston (4 hours away) because Addie needed a procedure for her heart. She has pulmonary valve stenosis and needed a cath in order to help open the valve. Addie and I got to fly by helicopter while Mathew drove there with my mom. Addie stayed 9 days even though this was supposed to be a procedure mostly done outpatient where patients could go home the next day. It was horrible. Mathew saved Addie from dying once because we had neglectful nurses. We couldn’t hurry fast enough to get back to Temple so Addie could be home for Christmas, and she never had her procedure because she got sick while she was there. We were so lucky to be able to spend Christmas, New Years, and Valentines at our local hospital with Addie and our favorite nurses. Addie was trucking along doing really well, but was having these random spells where she couldn’t breathe. No one could figure out why they were happening, and for a while they stopped. We figured that we had Addie all figured out- but we didn’t. Not only that, but Addie had a brain bleed from some blood thinners and fluid on her ventricles that caused her to have hydrocephalus. February 2nd she had her 5th surgery- a craniotomy to remove the blood and fluid, and some complications with her drain had her back in the OR a few days later for her 6th surgery. Craniotomies are scary and messing with the brain can have a lot of consequences. Addie had several seizures and seeing them was one of the hardest things I’ve ever had to endure. She’s now on seizure medication, but we haven’t seen any seizures since February, so I’m hoping that is all behind us. At the end of February, with just 6 days until her 6 month birthday, Addie came home after 181 days in the NICU. It. Was. Glorious. We played and played until we couldn’t play anymore. Except… Addie was still having those spells and they kept happening and happening. Anytime she would cry they would happen. Our home nurses weren’t showing up for their shifts as well, so Addie could feel our stress. After 6 days at home, we asked our Neonatologist if we should take Addie in to the hospital and she said yes. Thus began our PICU journey. We have been in the PICU almost 2 months and Addie is now 8 months old. During our stay we have found the cause of Addie’s breathing issues- bronchial malacia (floppiness of the bronchial tubes). Her bronchial tubes can spasm and close when she gets upset, making it difficult for the ventilator she’s on to give her breaths. However, we have been able to adjust her ventilator to the proper numbers and she is doing wonderfully!
So there you have it. Addie’s story (for the most part). She’s a crazy girl that loves to live life on the edge. We love her to bits and know God is using her for His glory. Sure, it’s not always easy or fun, but we know one day we will look back on it as our growing time. God is good all the time, and all the time God is good!