A Long Week

This has been a long week full of ups and downs. Everyone seems to be slowly recovering from colds. Thankfully Tyler never seemed to have more than a sniffle, especially amazing since I had bronchitis.

We had some good news on Tuesday from the neurosurgeon. Tyler finally has a normal feeling baby soft spot. His post surgery emptiness finally filled in last weekend giving him a nice round head with a slightly sunken fontanel. The MRI showed his ventricles and cyst are smaller. The only thing odd we saw was a pocket in the right upper part of his ventricle which hasn't shrank in size. We don't know if that is another cyst forming despite seeing no evidence of bleeding in Tyler's post surgery CT scan or if it is still a pocket of air trapped from surgery. If you line the weird spot up with the CT scan the air pocket is in the same place as this abnormality. So we wait a month and have another MRI. Worst case it's another cyst that they will need to fenistrate. They would go in the same place they have in the last 2 surgeries and if it's a cyst it's much easier to get to this one. If it's air we should see it dissipating over time. The surgeon keep commenting on how good Tyler looks. He was awake and alert for her, talking to her, and just looking around.

The other appointment we had on Tuesday was a meet with lactation to see if we can teach him to nurse. I haven't really tried over the last 3 weeks because he was rather bad before surgery and then there was so much post surgery pain I didn't want him to associate nursing with his tummy feeling bad. It took a solid 2 weeks for his tummy to recover. They moved his innards around to make room for all the tubing for the shunt and that tends to irritate the bowel. My little superstar latched on right away and really for the first time took a full meal at the bar. Since Tuesday, he's taking close to 75% of his feedings at the bar. In the late afternoon if I don't catch him early enough he's too fussy and wants a bottle. But all said and done I've been able to cut down to only 5 pumps a day instead of 8 and will be able to continue to drop pumpings over the next couple of weeks. I get around 3 hours of my life back!!!

We also met our new eye Dr this week. Thankfully we don't have to go to Dartmouth for this one. She took another very thorough look at his eyes with all the torture devices previously used on him. He screamed but overall allowed her to see what she needed. The first thing she said was he has huge symmetrical optic nerves. Going on to say it could be swelling from the hydrocephalus. It may go down now that the shunt is in. She also said large optic nerves can be a sign that a shunt has malfunctioned quickly saying that she doesn't think this is the case here. My reply was he could also have his mother's eyes with abnormallyy large optic nerves and will soon become a glaucoma suspect. Unfortunately, she agreed that could also be the case. As for this slightly wondering eye, that could just be he is only 2 months corrected age and the muscles just haven't developed enough control yet. We go back in a few months for another exam. Overall his eye look really good and we just monitor him and see what the wondering eye does and watch his optic nerves.

We also seen Early Intervention. A physical therapist and speech therapist came to see him. He had one of his great alert times for them and was cooing up a storm. The speech therapist was very excited with the amount of noise he made and how expressive it was. Tyler is able to move his arms and legs very well and equally. He can also move his neck the full extend despite having tight muscles. We have a simple stretch to do for him to help that. They did see his wondering eye and will recommend the MICE program for him. This program offers specialist therapist for seeing and hearing to come out with the regular physical therapist. At the end we heard that Tyler is displaying all the correct cues expected for a 1 month old baby. Hooray!!!

I'm hoping to relax a little this week. So far we only have one Dr appointment scheduled and that is another day up at Dartmouth. We see a development Dr, Neonatology, and Audiology all on Thursday. Now if only I can get Zoey (the dog) to get well again so I don't spend all week at the vet's.