Tuesday, January 20, 2009

NICU Follow-Up

If you had read a while back, I mentioned that I was anxious about our upcoming appointment with the NICU follow-up team and Charlotte's neurologist, Dr. Mantovani. We had the appointment yesterday afternoon. After a long weekend battling Charlotte's 2nd ear infection of her life (pretty good huh?) and then tackling the runny nose, coughing, wheezing she's been doing since Tues. last week, I was ready for good news and help.

We did recieve some great news and were very proud of our star student as she performed great for the therapists on Monday. She is delayed with gross motor skills, we know this, but is doing WAY more than the Dr.'s ever thought she would be able to do. Charlotte averaged the gross motor ability of a 14-15 month old. Cognitively (aka "smartness"), she was averaging the age of a 23-24 month old and has almost caught her peers! She has learned so much and just exploded with personality and has such a zest for learning, and it really showed. She impressed the therapists and we were proud parents sitting on the sidelines as they oooohhhhed and ahhhhed over our "big girl".

On the other hand, our big girl is not so much of a big girl, weighing in on Monday a mere 17# 12 oz which is the average weight of a 7-8 month old and she was 30 1/2" tall, the average height of a 14-15 month old. This was very disheartening news as she has put on less than 1/2 a pound in the past YEAR and only grown 1 inch. Dr. Mantovani knew we were more than puzzled, as is he because he feels there is no neurological explanation for the unexplained problems we are experiencing (BP and metabloism). Her weight continues to fall farther and farther off the growth chart, and now her height is slipping too, where it once was at least following the curve. Her head circumference (brain growth) continues with the curve which tells us that at least it is probably getting what it needs.

Dr. Mantovani is aftraid that despite what we have been doing to pack her food with calories and giving her more than the average child should require, it is not enough and she is "malnorished". This term sounds quite negative, but in no regards, is reflective on us. He says that he knows we are doing all we can, but the numbers are showing that even that may not be enough. Her body is NOT playing by the rules and we have to figure out what rules it is playing by.

Easier said than done.

His suggestion... #1 Consult GI Dr. again - determine if there is any way we can physically pack more in to what she is eating. And, determine what is a safe amount to give her. Too many calories can be taxing on the liver and kidneys and would need to be monitored closely. #2 If that doesn't work, wipe our slate clean and go to the Mayo Clinic for a team of specialized Dr.'s to put their heads together to help us and our little girl. He suggested no later than this summer...

I can't tell you the # of times he said to us "She has never followed the rules, she has always been a very atypical case and individual, and she is very complex". To hear a man who is very knowledgeable say that is quite frustrating and also mind-blowing. I appreciate his honesty and recognition that this is beyond his spectrum of care, but I really just hope that someone can help us. It frightens me to think what may happen if no one can.

We have so many questions...but first started with Charlotte's GI Dr. Utterson. After speaking with me yesterday, she wanted some time to think over the situation. Today, she returned my phone call with orders for a test for fat in her stool and an abdominal ultrasound of her pancreas. We are also very meticulously counting her calories again to give her a better idea of how much Charlotte is currently taking in, and how much we can safely increase them. We have much ahead of us, and this excludes the fact that Baby #2 will be making his/her presence soon. We wonder if we will ever be able to give her "enough" for growth. What is happening to what we are giving her? Why has she progressively gotten "worse" despite her awesome current eating habits?

We are scheduled to see Dr. Utterson in the office on Feb. 2nd right now, and will also be seeing her Nephrologist (BP Dr.) on Jan 30th and Endocrinologist the week after seeing Dr. Utterson. We need EVERYONE on board! I will also be making a follow-up appointment with her Pediatrician soon since she saw her when she was sick and waned us to return in 2-3 weeks, we can discuss all of this then. Lots to cram in, but Charlotte is Oh, So worth everything we can do.

The Hawns

2 comments:

John & Kelly said...

If you decide (or need) to go the Mayo Clinic route, let me know. We know some great people in Rochester :)

Zehr_Family said...

Jen,

I have followed your family since we were asked by an friend to pray for you while you were in the hospital. I want you to know I continue to pray for you and your family, especially Charlotte. I know what it is like to have an a-typical person in your life. My husband has non-hodgkins lymphomas but it is not like any other form that the doctors have ever seen. We are constantly told he is a miracle to be going this long withot needing chemo or radiation. His cancer is in the DNA and cannot be seen with standard lab test. His test have been sent many times to the Mayo clinic and we have sat on pins and needles the entire time. They have fantastic doctors there so if you have to go...you will be taken care of. Charlotte may become like my husband, a walking text book for the doctors to constantly be writing in to not only help him but help others if there are anymore like him. So, I will continue to follow you and pray for you all! Charlotte is a Blessing and will always be!