What does Lilly's cleft palate look like?
Lilly has a cleft palate III degrees. This means that both Lilly's soft and hard palate are opened. However, she doesn't have a cleft lip and her gums are in tact. Even though we do not have an actual picture of the inside of Lilly's mouth, the nurse was able to show us diagrams and pictures of other patients based on the description we have been given. Lilly's mouth looks most like diagram on the top right.
What does this mean for Lilly's eating?
The fact that Lilly is 19 months old, and hasn't had surgery yet, is a good sign that she is eating adequately. According to her paperwork she is mostly bottle fed. The nurse gave us a special bottle for cleft babies. Lilly has been using special bottles in the orphanage. The bottle we were given will help control the amount of air she swallows with each gulp (cleft babies tend to swallow extra air while drinking) and the nipple will be situated in the right position under her palate opening to help with swallowing. We are hoping that we can transition to a sippy cup. The nurse said we can expect her to be able to eat soft foods. Other than biscuits, we are not sure what solid food she has been given. We will introduce her to solid foods as soon as we can, but will continue bottle feeding during her transition time. We know to expect food to come out of Lilly's nose.
How many surgeries will she have and when?
Lilly's first surgery will most likely be in August. Dr. Mlakar would like Lilly to be home for three months before her surgery, so she can get settled in first. She will have a follow up surgery three months after that. The first surgery will take extra skin from the inside of her cheek to help close the opening in her palate. The second surgery will separate the skin from from the cheek and palate and will also check both palate and cheek to make sure they are healing properly. This method has been proven to help significantly with speech issues. These surgeries should keep her from having extra nasal speech. Her surgeries will take place in the morning and she will be admitted to the hospital overnight. She will be able to come home the following evening, once she is drinking well on her own.
Besides surgery, what's in store for Lilly?
In September, Lilly will be part of the cleft clinic. The cleft clinic is a way for all Lilly's physicians to meet together, look at Lilly, and make a collective plan for her care. She will be seen by her plastic surgeon, a speech therapist, a pediatric dentist, an orthodontist, an ENT doctor (cleft babies tend to have ear infections), and a social worker (who helps navigate insurance). They will let us know what we can expect for Lilly's care both short and long term. We may meet the speech therapist before the September clinic, since he/she will help us with feedings if necessary before Lilly's first surgery.
Lilly's medical care is only one aspect of her adoption. It is good to know what is ahead for us medically, but we also need to focus on her emotional health. We are also preparing for her attachment. I am reading a great book right now called The Connected Child. It is full of great information. I will have a book review in a later post. We also hope to have an adoption process update soon, as we anticipate our Article 5 tomorrow!
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