Neonatal Development Appointment

This past Thursday, Lily had a neonatal development checkup. The nurse practitioner adjusted Lily’s age back four weeks (since she was born at 36 weeks + 6 days) while doing her assessment and was quite pleased with how she’s doing. Lily was able to track a picture all the way across (when she was only expected to go half way), stopped when she heard a sound (and it was by her right ear which has the hearing loss), and she had gained almost a pound since her pediatrician appointment just a few weeks ago. Her neck strength and control is getting better, but she is still a bit wobbly.
So- Lily is doing well. That isn’t to say there isn’t anything that could be better though. She has little arm spasms that we’re pretty sure aren’t seizures and could just be a result of the brain injury. We’ll be asking about that at our next neurology appointment unless something changes that really worries us. She also has trouble with mucus getting stuck in her throat and she gags and chokes a little on it. This happens mostly in the morning just after waking, but does happen occasionally throughout the day. Lily also arches her back and neck. The nurse said that premature babies do this, though it’s likely connected to the brain injury as well.
There’s a prayer list for you then!
Lily’s next appointment is at the cardiologist in March for an EKG and echo cardiogram to make sure that the little hole in her heart has closed up as the doctors expected it to.

Here is Lily with her big sister Sarah who turned 3 this past week! 

Hearing Test

Lily had a follow up hearing test Monday afternoon to check her right ear. The two hearing tests she had while still in the NICU showed hearing loss in that ear. This test confirmed that she had mild to moderate hearing loss, but they're not sure yet what part is actually not working correctly. The eardrum is moving, and that's good, so we'll have to go back again to do another test to see if the bones are working. We only got halfway through the left ear test because she woke up and was wiggling too much, but so far that ear seems to be doing better than the right.

Sunday evening Lily did a good job of turning her head to look side to side at two toys hanging on opposite sides of her play mat and was able to keep her head up straight while on her belly for almost a minute. She has also been able to roll herself over from tummy to back and scoot a little forward when she's on her tummy. She's building up her muscles and knows how to get what she wants!

Thank you all for your continued prayers.

Ultrasound Results

You all are some really good pray-ers (and God is good!). Lily did so well yesterday in the car and during the ultrasound. We just got the call with the results- there isn't any more bleeding! It's so nice to have good news.

Thank you all for praying!

Prayers for today's ultrasound

Prayers would be appreciated today specifically for Lily to do well during the ultrasound of her brain, for the bleed to be resolved, and for her contentment in the car on the way to and from the appointment. Many, many thanks.

Neurologist

This week Lily had her two month well child check up on Tuesday. She weighed 9 lb. 15 oz., which is just shy of half of what Jacob weighs, at 18 months! She’s also grown 4 centimeters since she was born.
Thursday was her first follow up with the pediatric neurologist. He has ordered another ultrasound of her brain to check the little bleed that was found on the MRI and brain ultrasound while she was still in the NICU, to make sure it’s getting smaller and not bigger. We’ll be doing that next Thursday, the 6th.
We also noticed that she’s got a bit of a ridge on the top of her head, and the neurologist wasn’t sure about it, but to ask the pediatrician. (He didn’t mention anything about it on Tuesday when we saw him.) If he thinks it’s not going to resolve itself as her brain gets bigger, then we’ll be referred to a neurosurgeon for his opinion, though we’d have to go to Miami for that.
We’ve got a follow up with the neurologist in 3 months and will schedule an EEG to see if Lily is having seizures (there was evidence of them when she was in the NICU) and whether she needs to be on the anti-seizure medication she’s currently on.
Next week Lily will have a developmental specialist coming to our house (this will be twice a month) and will start her twice weekly physical therapy sessions.

Please pray for her cooperation during the ultrasound, for the bleed to be resolved, and for her complete recovery! Thank you!

And now…smiling pictures!

Colic and Smiles

Last Friday Lily’s cry seemed weak and hoarse, after sounding fine on Thursday. It didn't improve over the weekend and was so pitiful, we called the pediatrician on Monday to see if we needed to come in. We were able to get in and since Lily didn’t have any other problems, (no fever or cough, no signs of seizure, etc.), the doctor didn’t seem worried and that her voice just may have been hoarse from crying so much. The previous few days, and especially nights, had been pretty rough. We told him that if this had been any other child, we probably would have ignored it, (sorry, kids), but since it was Lily, we were concerned. He said that everyone is sort of on hyper alert with her, and that’s okay. He also said Laura could start drinking chamomile tea and that we could give some to Lily to help with the colic that she seems to have. The past few nights have been much better, thank goodness.
She weighed in at 9 lb., 4 oz..,so she’s still gaining weight well and the doctor commented that she’s got good head control.

We’ve seen a few sort-of smiles from Lily here and there but yesterday got some real ones (and a few oohs and coos!). Maybe we’ll get lucky and be able to get a picture soon. She is very good at focusing on faces and turns to look at all the kids when they come over and talk to her and tell her how much they love her. They’re even starting their own physical therapy with her, trying to get her to hold onto dinosaurs.

Therapy

Lily is 7 weeks old today! She had her first Occupational and Physical Therapy evaluation appointments this week. The occupational therapist said that Lily was doing really well and that unless anything changes, she won't need to come for therapy, which is really good. The physical therapist said that one of her shoulders seemed a little tight and gave us different stretching exercises to do with Lily, mostly as preventative. We'll be going to physical therapy twice a week, but the therapist was again pleased with how Lily is doing.

Please keep praying for her!