*I apologize because this will be long...and a bit scattered because I have so much going through my head*
We made it through our first appointment with Children's Hospital today! I have to admit, I was afraid I may faint when we got to the surgery portion of the discussion, but I did good...and am quite proud of myself!
We met with the nurse on the craniofacial team for around an hour. She answered our questions and gave a brief summary of the procedure/recovery/therapy/ etc.
They would like to evaluate Ella once we are home and settled. They are really good about not rushing into surgery and letting us go through the bonding and attachment for a while before we put her through another trauma in her little life.
At this point, we still don't know for sure if there is any palate involvement to the cleft. As far as we know (from pictures)...and according to her medical, she only has a cleft of the lip, however, the nurse said we should be prepared for anything (the nurse also commented on how symmetrical her nose was...typically children who are cleft affected, especially when it affects the palate or the cleft extends to the nose, have an asymmetrical nose (one side is more flat than the other)). Some children have what looks to be a 'normal' palate but there is actually a cleft beneath the surface of the skin (luckily I remembered most of that from grad school). This is called a sub-mucous cleft. I've actually seen these at work before. The child's cleft tends to go undetected until they start talking a lot and the speech sounds very hypernasal (the opposite of what it sounds like when you have a stuffy nose...there is WAY too much air coming out of the nose). So, they will do a more thorough exam of her mouth when we get home just to check it out.
They also suggested having her hearing tested when we get home. Not a bad thing for any AP to do, since newborns here in the states get a universal newborn hearing screening shortly after birth, but a decent number of children, especially those with a cleft palate, have chronic fluid in the ears...and occasionally, a hearing loss. Most children with clefts get tubes in their ears if this is a problem. We hope to rule that out for Ella. If she would need tubes, we requested that they do it at the same time as the lip reconstruction to minimize the amount of anesthesia she will need.
Remember my discussion about "what bottle to buy"? Well, I purposely dropped the conversation because I knew we were going to be getting Ella...and she 'may' require special bottles. We were given one of the bottles today! It's a simple looking little thing but is pretty cool.
There are a few brands of cleft bottles, but we were given the Mead Johnson. It's made of a soft squeezable plastic. Most children with a cleft lip ONLY, don't have significant problems feeding as they are able to form enough suction around the nipple to suck the formula/milk. Based on these cheeks...I'm guessing Ella is being well fed! :-)
If children have a cleft lip and palate (CL/CP), they may need special feeding equipment to minimize the amount of work the baby is doing while trying to suck(thus burning the calories as fast as they are being consumed). Also, many babies with a CL/CP will have nasal regurgitation (it comes right out the nose) until they get a feeding style established...these bottles help direct the formula/milk towards the back of the throat which should reduce that. Ok, the bottles...they are a soft plastic so that we/the parents etc. can softly squeeze the sides of the bottles as the child is making the sucking action. This way, the babies won't exhaust themselves while eating. It's also typical for most babies with clefts (who are still bottle fed) to be fed in a more upright position...and they need to be burped more often as they tend to take in excess air. Again, we have NO idea if Ella will need a bottle like this, but we are going to take the one we were given, along with a small case that we are going to order, and if she doesn't need it, we are going to donate them to her orphanage for future use.
The surgery...in most cases, if a child has both, a CL/CP, the lip reconstruction will be done first. If she were born here, the surgery would typically take place at around 3-6 months. The palate surgery (of course, depending on the child and many other factors) comes later...around one year. We are guessing she will only require the lip reconstruction surgery...but again, not sure. We'll probably wait around a month before we do the surgery. The procedure will be approximately 1-2 hours. Most of that time will be the planning of how it will be closed. The closure itself is a fast procedure. She also told us that although her cleft notch is so small, the scar will likely go up to her nose as they need to straighten out and reattach all of the involved muscles. We will stay in the hospital for about 2 days after the surgery. The stitches will be in for between 2-5 days and then she will wear medical tape over her lip for another 2 weeks. During this time...the poor thing will also have to wear soft elbow restraints like these so that she doesn't try to touch the area while it's healing. I've heard the babies HATE these...so we'll see how that goes!
We were given the choice of two doctors at the hospital. Both are plastic surgeons and both have completed fellowships in the area of craniofacial surgery. We are hoping to find references before we have to make the decision.
That pretty much summed up our meeting. She gave us her email address so we can contact her if we run into feeding issues while in VN. That is always their primary concern! Hopefully it will go smoothly for us! I'm sure I'll be posting much more about this process as the time draws nearer, but for now, we feel pretty set and ready!
Now, if only we could go get her!
Seriously, how cute is she?
- - - - - - - - - - - - - - - [brotherly love] - - - - - - - - - - - - - - - [ben]
