NICU follow up Appt

Today Kyleigh had a 6 month check up/follow up appointment with the NICU clinic of Women's Hospital. It was an interesting visit. According to the CDSA she should have had the follow up at 3 months but somehow her chart was ear marked for every 6 months for 2 years. As it turns out we will not be going for any more follow ups to their clinic because Kyleigh is already connected with so many doctors and specialists at Duke Hospital and therapists through the CDSA. However, today she saw the nurse, Dr. Wimmer (neonatologist), Becky the PT (physical therapist) and a nutritionist. She weighed in at 10 lbs 8 oz and a length of ---oh I forgot but she is long. :) Her length is on the mark with the growth chart and so is her head circumference. But her body weight continues to be below the growth chart record and less than 10%. She will remain on the high caloric diet for now. I also found out that it is safe for her to take the Vanilla flavored EleCare formula that we ordered even though the can says for 1 year old or older children. That is good news as we will no longer have to add vanilla flavoring once we finish out the unflavored cans we ordered.

Dr. Wimmer listened to her heart and said he couldn't hear the murmur but that sometimes ASD (atrial septum defects) are hard to hear because the flap closes and doesn't allow for sound of blood flow to be heard. On the other hand, it could mean that her heart murmur has resolved itself and that is great news. He said the place on her back was a hemagioma (forgive the spelling as I have no earthly idea how to really spell this medical term). Regardless, it is a harmless spot of tissue and blood vessels that usually gets bigger before eventually disappearing. He looked at her eyes and told me that the puffiness of the right eye seemed to be from her lymphatic system overproducing fluid and it also was completely harmless unless it affects her vision. He noticed the bad spots on the back of her head and suggested we contact Dr. Whelan for a stronger prescription medication ointment to clear it up. He also suggested we speak with Dr. Ulshen about her acid reflux and address her medications. There are many new drugs available that we could consider if Dr. Ulshen feels that they will work after reviewing her records.

The physical therapist worked with her some on rolling over. She did a great job again today. She will roll from tummy to back with assistance and much grunting. It is so cute. She also will sit propped on one hand with support from an adult but not without complaining :) That's my girl! She showed us some positions to work on and ones to avoid that will help strengthen her trunk area. The PT and doctor both seem to feel that Kyleigh is not as "high" muscle tone as the other therapist have reported but that she responds to pain and reacts with constriction when moved suddenly. We go to see the neurologists at Duke tomorrow to confirm and rule out the possibility of CP (cerebral palsy) as well as address some of her medications. The PT and Dr. Wimmer felt that Kyleigh nervous system was still immature and that would explain her still having the startle reflex and response.

They also addressed her car seat. They were concerned that it had been altered with noodles by the therapist to adjust her position. Although they agree her position in the car seat is incorrect and causing problems for her, the alteration of the seat could be damaging in the event of an accident. They suggested we "test" drive many car seats and find one that she "fits" into without modifications for the most safety. If they had tested her in the car seat today she would not have passed the safety test. So it looks like Babies' R Us here we come to give you more money -- again!

They also addressed the concern about training her to use a cup starting at 8 months. Currently, she will not spoon feed without complete and utter tears. I have no idea why she suddenly is refusing to spoon feed but it is very dramatic for child and parent. The occupational therapist suggested we take a break from the spoon for a day and dip her food with the pacifier and offer it that way but not to use the bottle feeder. At her surgery for the cleft palate she will not be allowed to use any suction or place fingers or objects in her mouth as it will interfere with healing. So using the pacifier for feeding is no different than using the bottle feeder because it isn't teaching her to eat but allowing her to use her sucking skills more. They noticed that she calms easily with her pacifier but suggested that a few months prior to surgery we wean her from the pacifier as she will be unable to have that after surgery as well. Can you imagine? The one thing that soothes her and she can't have it! I want them to come to my house and soothe her then after her reflux episodes that make her body completely shake while she cries and tell me not to give her a pacifier. Honestly, I thought this wouldn't be a big deal because Kaitlyn gave up her paci before age 2 but 8 months!!!?? Really?? To some parents this is trivial and their child "never took a paci"---well congratulations but my child doesn't suck her thumb and this soothes her. I am so frustrated by this news just as much as I am frustrated with the fact she is refusing food right now. She is even decreased her formula intake with the exception of her first morning bottle. I hope she gets through this soon.

On a positive note her double ear infections looked clear today and they should after 15 days of an antibiotic!

Well, tomorrow brings a host of another day with doctors. She will see Dr. Freedman at the eye clinic in the morning to check her pressure. It was extremely high last week and we need to see that the drops have made a difference or they will be scheduling another procedure/surgery to reduce the pressure. Then she will see the neurologists at the Lenox Clinic. Pray for us. Pray for Kyleigh. God Bless.