Our New Normal

Ellie 

Rex

Second pediatrician visit 

Ellie (left) 8 lbs. 0.5 oz.
Rex (right) 9 lbs.

I'm going to try my best to blog every week. The twins are already growing so fast and I want lots of pictures to help me remember. I'll start with today. We had two appointments today. My grandma and mother in law have been amazing coming with me and helping when Charlie can't.

We saw our physical therapist today at Orem Pediatric Rehab for initial evaluations for both kids. We had been noticing them favoring turning their heads to the right side more then the left and significant flat spots forming on the right sides of their heads because of it. They measured their heads today and felt their neck muscles and both babies were diagnosed with torticollis. That basically just means that the muscles on one side of their neck are tighter then the other so its more comfortable for them to turn their head one way. The PT said that torticollis is more prevalent in twins because they have less room in utero. I would think that when you are only 23 weeks when you are born that you still had some good room to move around, but I'm not sure. They seem pretty confidant that it can be resolved with a little physical therapy and if we are still having issues when they are 5-6 months corrected age we will look at getting them helmets to help with the shaping of their heads. The good news is we have done the PT stretches with each of them twice today and already they are turning their heads to the left more often!

Since we got home we have also had a neurosurgery appointment for Rex at Primary Children's Hospital. This was an awesome appointment because we got another brain scan and it looked the same as when he left the NICU. No change is a good outcome. He still has grade 3 and a grade 4 brain bleeds but does not need surgical intervention right now. His neurosurgeon said that when he has a brain that looks like Rex's he really drags  his feet to put in a shunt to drain the extra fluid from the brain. We will watch his head circumference closely and work to make sure he is progressing in development. If all that continues to go well we don't need any surgery for his little brain right now. We will continue to get brain scans and meet with his neurosurgeon every month.

On another trip to Primary Children's Hospital we met with a GI doctor and a nutritionist. When we left the NICU we had all the supplies to do feedings via a NG tube and we were hooked up with a home health company to assist us. We haven't had to use those supplies once! The dietician looked at his daily intake and weight gain and the GI doctor talked to us about different concerns we had with his eating abilities. At the end of our appointment they said if he continues to improve in his eating and gaining weight we don't need to come back to see them at all. Which I am very happy about because I never knew a trip to Salt Lake with two little babies could be so complicated and time consuming. They did suggest that to help Rex gain weight we up the calories we mix into his milk from 22 to 24 per ounce. We did that for 24 hours and we aren't doing that again! Poor baby was so fussy and uncomfortable. They also suggested that we change the nipple flow on both babies bottles. Now that they are older and can handle bottle feeding more effectively we moved them to a level one nipple instead of a preemie and they take their bottles like champs! They finish their milk faster and Ellie definitely is less frustrated with it!

We also have an occupational therapist who comes to our house twice a month to work with both babies and teach us strategies to help with their overall development. We work on things like rolling over, tummy time, tracking objects with their eyes, swatting at toys, and general muscle tone. I really like our OT who comes out and it is so nice that I don't have to pack the babies up and make the trek to the doctor's office for another appointment. She has been helping us understand some of Eleanor's sensory processing difficulties which has been a lifesaver for us!

We have been seeing our pediatrician weekly to get the babies weight checked and track the growth of Rex's head. We drive about 20 minutes to see our doctor because he has experience with micro preemies. And I found out he has 10 month old twins too! The first appointment was a little rocky, Rex had only been gaining about 15 grams per day and they want him gaining 23-30 grams per day. The doctor said that if in the next week Rex didn't improve in his weight gain we may be looking at putting a NG tube in. I stressed about Rex's eating that week and tried my best to get him to eat as much as he could without forcing him to eat. We are still being very careful to avoid and oral aversion which can happen when you force a baby to eat. The good news is that when we went back he was gaining about 25 grams per day. And the week after he has been gaining 28 grams per day! Eleanor has been doing fine with her eating and after our appointment today we found out she has been gaining 35 grams per day, so we are going to decrease the amount of calories mixed into her milk. That also means that we don't have to mix and label two different kinds of milk because they are now on the same amount of calories! They have been gaining weight so well and overall look healthy. Their doctor said that if they gain again next week we can start seeing him every two weeks instead of once a week, which means one less appointment to go to!

I know lots of people probably aren't interested in the nitty gritty details of our kids medical stuff. But I write this blog first and foremost for myself, it's my journal and I'm happy to share it with everyone. I hope that it can help someone who is going through something similar or even just inform people about prematurity and what it looks like months and years down the road. I'm so proud of our two little miracles, and if you don't come for anything else, at least come for the cute pictures!