Tuesday, November 24, 2015

Neonatal Follow-up Clinic appointment

Today was one of my most-looked-forward-to appointments: Neonatal Follow-Up Clinic day!

The reason I love these appointments that come once a year is that Elsie is looked at and evaluated by several specialists in different areas. I really like knowing how she is doing compared to her same-age peers, and what things we need to work on. This place has such great resources for parents and families in need, and they truly want the best for each child.

Today's appointment went very well. Elsie was seen by a speech & language specialist, got her vital signs taken, did cognitive testing, and was seen by a developmental pediatrician. All of the people we encountered were thoroughly impressed with Elsie. She is at her age-level or above for both speech & language and cognition. The lady who did the cognitive testing was stunned when I told her that Elsie had had Grade 2 and Grade 4 brain hemorrhages.

I talked to a few people there about when we could remove Elsie's gtube and who had the final say in authorizing its removal. We haven't used her feeding tube since July. I can't even imagine using it ever again! Elsie is doing so well eating orally. She eats like a typical 2 year old in every way. I know there are some doctors who recommend leaving the tube in until after cold/flu season is over, just as a precaution in case extra fluids or medicines are needed if the child gets sick, and that is reasonable. It won't be the end of the world if we keep it in until spring. I don't think it's necessary, but it won't be the end of the world. We all decided that I would call the GI clinic at Primary's, where Elsie's gtube was placed, and ask what their recommendations were.

I called the GI clinic this afternoon, and the nurse I spoke with didn't see any reason why we should keep it in, but she sent a message to the GI doctor to get his approval. Since it is almost Thanksgiving, she said they might not get back to us until Monday, but that they would call us back when the doctor responded. This possibility of being done with the feeding tube very soon is very exciting to me. Again, if the doctor says that we should keep it in until spring, I'll be a bit disappointed but it's not the end of the world. After all, spring will be here before we know it!

I'm so proud of my sweet little girl today. Elsie is incredibly smart and has overcome so many obstacles. I love her so much!


  1. Elsie has overcome much ... because she has parents who fought for her and who have done everything possible to nurture her!
    Be sure to save this picture of her. When she's a teenager and is complaining about bad hair days, you can show it to her and put things into perspective;)
    We love you all lots!

  2. So happy for Elsie and for all of you! What a wonderful blessing!! Love the picture! What a delightful little girl!