A special little girl.
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Special needs can be all kinds of different things. It could be a genetic, physical,or mental impairment. They are just as it says, special in all our hearts.
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In 2018 we found out we were expecting our 3rd child. Overjoyed we went into our 20-week scan to check on how she was growing. As you might know babies while they’re in the womb don’t always cooperate and they often cannot get all the pictures that they need to document growth. When they were having issues getting pictures of our sweet girl’s face, I didn’t think anything of it, especially since she loved to have her hands right there. Our OB sent us to a specialist to see about getting a more in-depth ultrasound and to make sure baby didn’t have a cleft.
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After this call I started researching, like I normally do, and became overwhelmed with what was before me. I knew nothing about clefts before our sweet Amelia. Fast forward to September our baby was born at 39 weeks perfectly healthy. There are many kinds of clefts and hers was extensive. The first few month of her life was constantly driving down to our children's hospital for appointments with her specialists.
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There were 2 main focus points in her care at this time, number one was obviously making sure she was growing properly, and second was to start shifting her face back where it needed to be. Our hospital used a plastic device called a NAM to help do this. It basically helps to move the lips and gum line back where they should be and eventually helps to reshape the nose as well. In our case when we tried this everything started to go down hill and we ended up just using tape to achieve this instead.
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When we went to start the NAM Amelia's feeding skills completely fell apart. She wasn't eating and was sleeping all the time to compensate for her hunger. After two hospital stays for failure to thrive we decided that a feeding tube would be best to help her grow. It was suppose to be a short term option. It quickly became apparent that there was more going on than we had thought. Not only was she not eating well but she was also having aspirations with the milk (This just means that the little flap that blocks the lungs when you swallow wasn't working properly and she was getting fluid in her lungs instead of in her stomach.) At this point it was decided that she would be fully tube fed.We moved from an NG tube (one that goes through the nose and down into the stomach, to a G tube (one that is surgically placed into the stomach wall) when she was 5 months old. This was her first surgery.
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Our sweet baby had her second surgery at 8 Months old. This was her lip repair. Going into this we knew the amount of surgeries she would need could be anywhere from 8+. We knew the first year would be the hardest, I just didn't know how hard it would be to hand over your baby hoping for a positive outcome but not knowing if that would be the case. Her lip repair was emotional. We had come to love her exactly how God had created her and I wasn't sure that I would feel the same after she looked different. Of course I still did! She healed well, and quickly with minimal pain or issues. One surgery down, many more to go. The next one would be at a year of age. They would go in and fix her palate (The roof of her mouth). Through all this She was still being strictly tube fed.
Her palate repair came and went. The recovery was a lot harder than any of her other surgeries. She was in pain, and you could tell that she just didn't know how to handle it. She also had to wear gloves for 3 weeks to prevent her from putting anything in her mouth, including her hands. Can you image what it was like to have a 1 year old with gloves on!
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Tube feeding had become second nature to us about 2 weeks in. At first it was completely overwhelming, and I even had a medical background. There were so many steps, and I felt like I was missing out on bonding with my baby. Amelia's needs became more as her first year of life went on. We had appointments with nutritionists, occupational therapists, speech therapists and her doctors at least once a week. I was not only a mother but also a caregiver. As she has grown and changed things have calmed down and thankfully most of these services are in our home now. After her palate repair she was able to begin eating real food, and her feeding has taken off. We are on the road back to " being normal" but she will likely need more care than the average kid. When it comes to talking and speech, at this time she is pretty much nonverbal. She says mamma and hi but that's about it. She is a great communicator in other ways. Our jourey is far from over. Right now we're in a lul of no surgeries and it feels great, but she has at least 3 more surgeries to get through, likely more. She is strong and inspires me every single day.
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As a mother who has been through the NICU, (my oldest was born 3 months premature) and having a child with special needs I can honestly say that we not only experience the normal burn out that comes with motherhood, but also caregiver burnout. It is a long lonely road and often there is little support from those who haven't be through it. If you know a mom of a child who has special needs give her a hug a little longer, give her more grace when she has emotional meltdowns, know that her life is anything but normal. If you are a mom of a child with special needs know, you're not alone. Even if your child has a rare condition and you feel like no one knows what you're going through, we are all just trucking along doing the best we can for our sweet special babies.
Resources:
- Cleft Info:
https://www.seattlechildrens.org/conditions/cleft-lip-palate/
-Feeding tube: