6 weeks is not long enough

Almost 6 months old!

Well, we survived Jeremy's first week back at work! I think Aiden and I did pretty well...ok I did have one breakdown day in the middle of a tough feeding spell where I got no sleep one night staying up with Aiden for hours trying to get him to finish his bottles. Luckily, my mom came down that day and sent me out of the house and then to my room to take a nap, she took all the tough feedings that day and even cooked dinner for Jeremy and I - she rescued us :) It was hard to adjust to doing all the night-time feedings and not having a partner to pass "Aiden Duty" off to. 6 weeks off work for baby bonding time is just not long enough!

Like I said, feedings have been tough the last couple weeks. He went from taking 2 oz. every 2 hours to having to fight him to take 1 oz. each feeding. I was terrified that he wouldn't gain any weight and we would have to put the feeding tube back in. It's hard because people always say that babies will eat what they need and know when they need more or less food, but in the case of a micro-preemie that had intestinal surgery and is on oxygen, that just isn't case. We have to track every feeding he takes and watch how he spends his calories - when Aiden cries we pretty much pick him up immediately so he doesn't burn them up on something as useless as crying :)

Luckily, he has been doing better the last few days, we talked to his doctor and started giving him reflux medication twice a day and have tried just about every formula type and brand on the market, including adding rice cereal to thicken it and add some extra calories. Aiden is very picky and some formulas he just hated the taste of and refused to eat it. He did like the rice cereal in his milk, but it made him sleep all night without getting hungry...which sounds great, except that he missed out on feedings that he still needs to have in order to get enough to eat each day, so no more rice cereal! The good news is even with all that, he is still gaining weight - not quite enough, but at least he is not losing. He weighed in at 8 lbs. 5 oz. on Tuesday.

After a couple weeks of researching I spoke with the doctor at Shriners about the treatment for his hip. I mentioned to her that I didn't feel we gave the harness a good enough shot. After doing my research I found out that we were not told the correct way to use the harness and the harness was never properly fit to Aiden. We were told to take the harness off a couple hours a day and to take it off for baths, clothing and diaper changes. As it turns out, it is not supposed to come off EVER until the hip is confirmed in place by an ultrasound (which he never did have until we went to Shriners). The doctor said that she talked with her colleagues and none of them had ever done surgery and casting on a baby as small as Aiden and don't recommend it. She said she would like to fit him back into the harness and keep it on 24/7 for 2 weeks, at 2 weeks she will evaluate him and do an ultrasound. If his hip is in place than we would keep the harness on for another 6-12 weeks. If his hip is not in place we would take the harness off and she would want to do the surgery when he is older - around 6 months corrected age (about 3 months from now). So, we are going to get him fitted back in the harness, but I am still pursuing my referral to another doctor to get a second opinion.

Lets see...how about some good news??? He is free and clear from eye doctor visits! He got released showing no signs of ROP. The doctor says his eyes are perfect :) We have also been able to lower his oxygen to 1/8 liter during the day, he is still on 1/4 at night - but mostly just for our peace of mind, I think he would probably be fine on 1/8 but he breathes so shallow at night and we don't want to risk him having low oxygen saturation. I have also been taking him off the oxygen during the day for about a 1/2 hour occasionally. He actually does pretty well when he is awake. On 1/8 liter his oxygen saturation is 97-100%, with no oxygen it is around 90-95% - until he falls asleep and then it drops down into the 80's. We can't leave him off too long, we don't want him to work too hard to breathe - calorie wasting again! It's gives me hope that he will be off the oxygen in the next couple months :)

He was also evaluated by a physical therapist, occupational therapist and child life specialist from Easter Seals. They wrote up a report on where he is currently at and gave recommendations for his treatment. His gross motor skills (range of motion in limbs, head control, rolling over) and fine motor skills (grasping toys, bringing hands to his mouth, visual skills) are at a 3-6 month old range and the child development (social skills, playing with toys) is at a 0-3 month old range. This was good news - he is at or above his range for his corrected age (which is 2 months, 3 weeks old right now). They recommended he see the physical therapist and child development specialist bi-weekly and the occupational therapist once a week.

So, that was our week. Aiden has been smiling alot more lately and I think I even heard him laugh once. He is still a pretty serious baby - he's not into silly noises or peekabo, I don't think he likes people treating him like he is a baby :) He has started to be a little more interested in toys, but mom and dad are still his favorite things to play with! He is soooo close to rolling over and scoots himself across the floor when I FORCE him to do tummy time (let's just say he isn't a fan). He has been sleeping good (still in bed with us of course) and getting into a routine, he has certain times he likes to sleep, eat, poo and play. I have even caught him REALLY watching the NBA playoffs with daddy :)

watching basketball with daddy

He LOVES his bear rug - he sleeps on it and plays on..thanks Aunt Lisa :)

"Milk drunk"...staring at the ceiling fan after a feeding

A home-made outfit...not by me of course :) Knit socks by my mom's friend Kandi, owl onsie by Aunt Sara and knit blankie (that we LOVE) by Shelley