Three Specialists in a Week!

I am sorry to have been so slow in getting another update posted. I think life would be hectic enough with the addition of another kid (it's hard to get used to saying "kids" or "the girls"!), but this time of year has made it even more hectic. Thank goodness for on-line shopping, that's all I can say! Anyway ....

Several weeks ago, we met with a pediatric neurologist. He said that he sees many babies who are referred due to suck/swallow or feeding issues. He checked Annie out and felt that her muscle tone was good and that she looked good otherwise (strength, etc.). Before the appointment, I had become convinced that Annie's feeding issues were solely anatomical with her lower jaw formation, but he didn't agree. He felt that Annie is having trouble coordinating everything as well, but it's not anything that warrants an MRI at this point. He felt that the MRI would, in all likelihood, come back normal so it isn't worth the risk of sedation and all of that. (Fine by us.) The other option -- if we did find something -- wouldn't change how we're handling Annie at this point (working with the special bottle to feed her, etc.) so, again, it's not worth doing anything else at this point. I gathered from him that it's a wait-and-see game for him. We didn't make a follow-up appointment now, but we'll wait to see how things develop with Annie over the next couple of months.

The ENT guy seemed to be concerned mostly with making sure that Annie's airway is not compromised by her lower jaw formation. He said that her breathing is good and there is no reason to be concerned about that. He found fluid in her ears, so he wants to check on that in 6 weeks. She didn't have an ear infection; rather, he felt that it was a drainage issue that could be tied to her anatomy/jaw positioning.

The lactation consultant in Concord recommended the appointment with the ENT doctor as a means of getting to a speech pathologist. Through both of them, we met up with a speech pathologist who works for the state. Her specialty is suck/swallow issues, especially with preemies and newborns. She came out to our house a couple of days after we met with the ENT and she was awesome. She definitely was the person with whom we needed to connect! She worked in a NICU for 10 years and just seemed very knowledgable and competent. She, too, talked about Annie's airway, saying that she was doing a great job "protecting" her airway when she eats. Overall, everything she had to say was positive as far as how Annie is coping with her anatomical challenges. We talked about the coordination issue and she seemed to think that it was a tough call -- would Annie have the coordination issue if she didn't have the anatomical issues to deal with? No one can know that just yet.

The speech pathologist did put a name to this and said that Annie has Pierre-Robin Sequence. The sequence, as far as I understand it, is just the lower jaw formation. (At least that's about all it is for Annie. Some babies with PRS have cleft palates and require either feeding tubes or tracheotomies to help them breathe or eat.) Interestingly, in some cases PRS has been linked to issues or disruptions in the first trimester of the pregnancy. INTERESTING since we know that whatever happened with Annie's heart happened in the first trimester. In fact, the speech pathologist was glad to hear that Annie's heart had already been checked out -- I guess there can be some link there to the development that occurs in the first trimester. (I get in over my head on the science very quickly -- my apologies to our doctor and medical friends!)

The thing with PRS is that it is linked to other issues in about 40% of cases. So ... you guessed it ... we're on to another specialist. We'll be seeing a medical geneticist sometime in the near future so that full genetic testing can be done. The most common syndrome linked to PRS just doesn't fit for us -- I think we would have seen it elsewhere in our family by now and the symptoms just don't add up for Annie -- so I am cautiously optimistic that the genetic testing won't reveal anything too exciting. That could be denial at this point though.

Meanwhile, Annie's chromosome analysis and other blood tests have all come back normal so far. She continues to gain weight, albeit slowly. She was six weeks old a few days ago and we weighed her at a whopping 7 lbs. 12 oz. Still, she is doing everything she should be doing (except nursing!) and seems alert and happy. She's very calm and only cries when she's really hungry, and that's not very often. We still have to wake her up or feed her by a schedule, because she rarely lets us know she's hungry.

Jamie (since a few people have asked) is still in love with being a big sister!! She thanks me just about every day for having her. Out of the blue she'll say "oh, thank you, Momma, for Annie!" (Seriously.) She's having a hard time not having her every whim and desire met at the drop of a hat, but mostly she blames Scott and I for that. Annie still can do no wrong as far as Jamie is concerned, she just wishes she wasn't sleeping and eating all the time so that she could 'play' with her more.

The photos are from Annie at one month (on the red blanket with hearts from my sister Lori) and on the plane on our way to St. Louis to surprise my father for his 70th birthday. Jamie's pic is from a few weeks ago. She decided to 'pretend' to be sleeping, which lasted about one minute before she was really asleep (of course).