Back in the harness again...

Aiden was fitted back into the harness for his hip on Friday at Shriners. He will be wearing it for 24 hours a day until June 9th when we will go back for an ultrasound. If his hip is in the socket then he will continue wearing the harness 24 hours a day for another 6 weeks or so, if it is out of the socket then we will take the harness off and he will probably have to have surgery and casting when he is about 6 months corrected age. We are really hoping this works so that he doesn't have to go through all that.

The harness isn't that bad, he shrunk about 5 inches since it pushes his legs up! His knees are up to about his belly button to keep his hip in place. He was not a happy camper for a couple of days and nights (momma got about 6 hours of sleep in 2 days - daddy was lucky to be back at work!) but, he has gotten used to it again and his smile has returned, he even laughed for the first time at momma on Sunday :) He can only wear onsies that are a size bigger than he normally wears - but it is hot outside anyway! There are also certain ways we have to hold him and feed him now since his right leg cannot be pushed inward and he can't lay on that side. It is also interesting to change diapers - we have to kind of thread the diaper through the straps of the harness.

Aiden in the harness in his favorite position

So, in the middle of all that (with a bad couple feeding days) Aiden managed to gain good weight and is up to 8 lbs. 14 oz. I think he has finally found a milk based formula that he likes and doesn't hurt his little tummy. He has been on soy formula for the last month or so and I had read that it wasn't so good for preemies to be on soy so getting him back to cows milk makes me happy. Agh...I wish I could have been able to breastfeed!!!

Aiden got to meet his new cousin Sydney on Sunday. She is Jeremy's sister Kim's first baby. She was born on May 14th, so she is almost 2 weeks old. They are pretty much the same size :) They were sitting near each other on our couch and when she cried Aiden would look at her and then get his worried look on his face - he wasn't sure what to think having another baby around! It was cute to see Jeremy and his sister together with their babies and I am glad that Aiden will have a cousin his age to play with :)

Kim and Sydney, Jeremy and Aiden

So cute!

That's it for now. We have Aiden's 6 month pediatrician appointment on Wednesday and he is scheduled to get his immunizations, i'm not sure if they will be able to give them with the harness on - we'll see! He sees his pulmonologist for a check-up on Thursday, hopefully, except for those appointments it will be a quiet week!

Naked Baby

Just had to post this pic of Aiden "au natural"....just him, no oxygen, no nothin' (OK, I had an O2 monitor on his foot)! I can't wait till the cannula is permanently off him :)

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

My First Mother's Day

After many, many years I finally got to celebrate my first mothers day yesterday. We went up to my grandma's house, my dad BBQ'd and we sat out on my grandma's back deck on a hill that overlooks a golf course. It was the first time we have been out of the house with Aiden for something other than a doctors appointment - so no medical updates in this post, it was just nice to have a day not thinking about it all!

We had to pose for some pictures - my sister took alot, I will post more when she sends them to me (hint, hint)

Relaxin' on the deck, watching the big boys play in the sprinklers

Aiden got to meet some of his cousins for the first time and I got to see my 3 nephews for the first time since September - we have been so worried about getting sick for the last 6 months or so that we had to stay away...but, everyone was well and the kids looked but didn't touch. We missed them, they have all grown so much! I can't wait until the day that Aiden is running in the sprinklers in my grandma's lawn acting all crazy with them :) Until then, he sat on the deck watching them with his mommy and daddy. He wasn't crazy about the bright light - he was indoors for the first 4 months of his life!

My boys

Looking pretty cool in his sunglasses and "I love mommy" shirt

He loves daddy, too

Jeremy had some beautiful flowers delivered to me with with the sweetest card attached and got me a digital picture frame to fill with pictures of Aiden (OK, and I added a few pictures of the dog in there, too).

Flowers from Jeremy

We had a good day out of the house, not a bad way to spend a Sunday afternoon!

Some good news and some bad news

Wow...it's been a long time since our last post :) We have been pretty busy the last couple weeks, it seems like we have a doctors appointment or a nurse or therapist coming to our house everyday...and when we don't have an appointment we are on the phone with them - even on the weekends! Aiden is still doing really well at home, mom and dad are starting to go a little stir crazy though! We don't get to get out much (except to go to the doctors, of course) and just when I was thinking RSV and flu season was coming to a close and maybe we could get out a little more with Aiden, the swine flu pops up. I can't wait until summer when the world is a little healthier of a place for him!

We got some good news today, Aiden finally passed his hearing test on both sides. We went downtown to a pediatric audiologist and she administered a more comprehensive (but way quicker and easier) test than the hospital had done and he passed right away. So, there is one less thing for us to worry about! He does go back to the eye doc on Thursday to do another exam to check for ROP, so far his eyes have been fine so this one might be the last for awhile if all goes well.

He went to Shriners last week for his feet and hips. It was different than I thought it would be. They did not want to re-cast his feet and recommended physical therapy until he is a little older and then see if he needs casts again. I'm not sure about that, while I love not having casts on his feet it seems to me that it is better to get it taken care of while he is younger and his tendons and ligaments are more flexible and easily moved. I also think that since the casts were already on for 5 weeks, why not just finish now? They also did an ultrasound on both hips, one is still dislocated and his new doctor does not think the harness he is currently in is going to fix it and she wants to put him under general anesthesia, force the hip into the socket and cast it. This is the bad news. I am not crazy about the idea of him going under anesthesia again considering he can't breathe on his own when he is under and would have to be put back on a ventilator, stay at least overnight at the hospital and then have a cast from his rib cage to his ankles on both legs for 3-6 months during the summer. There are other alternatives out there from the research I did and I am also not convinced that we have given the harness a good enough chance to work, his former orthopedist said it would take 3-6 months for it to work and it has only been 6 weeks, I am also not sure it has been fit right and that we have used it correctly. So, we are going to get a second opinion about their recommendations before we do anything. Even if casting is needed, I have seen casting done on just the effected leg and go only to the knee to make it more comfortable and better for the baby's development. I had heard such good things about the Shriners hospital and am a little disappointed in the treatment options they are giving us.

Aiden is still on his oxygen and we saw a pediatric pulmonologist who gave us an o2 monitor for home and told us to use it to start weaning his oxygen to 1/8 liter and then off oxygen during the day if he tolerates the weaning. She said she expects him to be on oxygen until he is around 8 months old due to his small lungs and being on the ventilator for so long, it does depend on his growth also. We will see her once a month. She was concerned about his weight gain and told us to aim at getting Aiden to eat 20 oz. of formula a day, right now he takes 17-19 oz. a day, so we are close! On 4/28 he weighed in at 7 lbs. 9 oz, his home health nurse weighs him when she comes every Tuesday, so we will find out tomorrow how we are doing with weight gain.

Other than that, we have had a physical therapist come and evaluate him (more good news - she said he was doing everything that he should be for his age!) and have an occupational therapist and child development specialist coming this week also to evaluate him through a state run program. After the evaluations are all complete they will write him a care plan and schedule in home therapy accordingly.

There is so much for us to do, we really enjoy the times where we are just holding and cuddling with him or playing with him on the floor with his toys. He is starting to sleep better at night - although he still has to be in bed with us and he is starting to let us put him down a little more. Which is good because Jeremy has to go back to work next week! 6 weeks has gone by way too fast!

Playing in his little gym...he loves it!

He loves kicking on the floor and looking at himself in his little mirror!

Settling into life at home

Having "kick time" on the ground - he is working on rolling over :)

In the swing

Cuddling with daddy

Little Mr. Nicolls minus the feeding tube!

Aiden has been doing so good since he came home. It has been a fun, exciting, exhausting, laughable, challenging and wonderful 3 weeks. Jeremy and I are learning how to be parents and nurses to a preemie at home.

Feeding Aiden was difficult the first 2 weeks, he was constantly having to be tube fed and at one point stopped wanting to take anything from the bottle. Last Saturday we needed to change out his feeding tube and decided to just not put it back in and see what happens. We also changed his formula, started feeding him every 2 hours instead of every 3 (he was getting 60 mls every 3 hours) and experimented until we found the right bottle/nipple combo. Well, something worked because we haven't put the tube back in. He is taking 45-50 mls every 2 - 2 1/2 hours all by bottle and has been eating over his required amount everyday. We don't know if he just didn't like the feeling of the tube in his throat or if changing to every 2 hours made the difference, but he is now telling us that he is hungry and we no longer have to force a screaming baby to eat.

He has been re-casted twice since we have been home and currently he does not have a cast on. His orthopedist showed us how to massage his feet and we have been doing that a few times a day. He will most likely get casts put back on both feet when we go to see his new doctors at Shriners next week, but for now he has a little bit of freedom :) The doctor also said his hip is doing better, Shriners will now see him for that as well. It will be interesting to see what Shriners does, they specialize in babies and children and I hear that they just do more "kid friendly" things - better casting techniques, etc.

He also has had another eye appointment and another hearing test. His eyes look really good but he failed his hearing screening on his right ear, so we have added another specialist to our list and Aiden will go see a pediatric audiologist in May to do a more complete screening to see if there is an issue with his hearing in that ear - it could be nothing or it could be that he can't hear some tones. We'll see, but we are trying not to be too concerned, we hear preemies fail the screenings for no reason often.

He is still on 1/4 liter oxygen, we have an appointment this week with a pediatric pulmonologist that will be watching his lungs and help us to wean Aiden off the oxygen and medications that are helping his lungs, so we will be interested to see what he says. The home health nurse measures his oxygen saturation when she visits and it has been at 100% each time for the last 2 weeks, hopefully we can start to lower his liter flow to get him off the O2 soon!

Other than all the appointments, Aiden has been doing the typical baby things with us - going on walks in the stroller, being held, playing with toys on the floor, being held, playing in his swing, learning how to hold his head up, being held, trying to fit his whole fist in his mouth when he is hungry, grabbing at our hands/his bottle/our clothes and being held. He has turned into a wiggly little boy and doesn't like to sit still for very long - which is a good thing...the more he moves the better!

We love having our little one home and have adjusted to life without much sleep and having him on us at all times. He was content on floor by himself this morning and I was able to make coffee, make formula for the day, wash his bottles from the night, eat breakfast, get his medications and breathing treatment together, and clear the dishwasher all in 15 minutes. Its amazing how much faster you can move when you become a mother!

Happy Easter!

Aiden's first Easter!

An Easter picture of both of our children :)

We had a quiet Easter at home today. We took Aiden for his first walk and showed him around the neighborhood - it was a beautiful day outside! We can't wait until Aiden is running around hunting for Easter eggs :)

It's been a busy couple weeks for us, it's hard to believe that on Tuesday Aiden will have been home for 2 weeks! We are still getting used to life with a little one, he still doesn't want to be put down and will only sleep at night if he is in bed with us. We are adjusting to getting much less sleep than we used to get - but it is definitely worth it :)

Our biggest challenge has been with feedings. A couple days ago he started crying uncontrollably during feedings and hasn't been taking as much, we think he may be having a hard time digesting the thick, heavy Neosure formula for premature babies, so we changed his formula last night and it seems to be making him feel better, he is much less fussy and gassy and has been taking more food by mouth. We'll see if it continues - we are trying everything to get rid of the feeding tube!

We have had alot of doctors appointments this week and a home health nurse comes to our house twice a week. They make sure we have everything we need, answer all our questions, and examine and weigh him. On friday he weighed in at 7 lbs. 1 oz. The nurse said she was very pleased with how he is doing at home and might cut her visits down to once a week. He has changed alot in the short amount of time since he has been out of the NICU, he moves his arms and legs around so much more and is grabbing at us, his bottle and toys. He holds onto my hands when I am feeding him - it is really cute. He is just working on growing and developing his little personality!

Here are some pics of our week...

Playing in his crib, watching the mobile go around

Wondering whats going on while mom & dad soak off his cast

Happy to have his cast and sling off for a few hours - look at his feet!

Bath time in the whale tub

Busy Days (and nights)

Aiden has definitely been keeping us busy since he's been home.
He REALLY wants to be held all of the time. We try to let him get some crib time every so often but it usually doesn't last very long, he complains after a few minutes. Our theory is that when we put him down he is thinking he is still in the NICU and that we are leaving him for the night.

He came home on 1/4 liter oxygen and he still has the NG (feeding) tube in place just in case he can't finish his bottle. He is getting 60ml every 3 hours.

He is still on 3 oral medications as well as a breathing treatment every 12 hours which is a medication in the form of a mist.

We will be having a nurse come to the house about twice a week to check on him.

The nurse weighed him while she was here, he weighed in at 6 lbs 10 oz.

Next week will be very busy. Every day we will have some sort of appointment.

We gave Aiden a bath today so I took a bunch of pics and a short "afterbath" video.

These pictures are "clickable" so you can view the full size :)

Aiden changes his address...

Just another quick update since I have another dirty diaper to change in about 5 minutes....
AIDEN IS HOME :)

We picked him up this morning and he slept most of the day which means Holly and I won't sleep tonight.

We had a pretty smooth day which is good since the last couple days were pretty hectic. We will post some new pics soon.

Quick Update...

Aiden is currently on 1 liter per minute at around 30% Oxygen...he is progressing towards his homecoming next week. It is very exciting to be talking to the doctors, therapists, and nurses about "when he goes home". We worked on a few feeding exercises today to continue training Aiden to bottle feed. He did pretty good, but was a little moody since he got his 4 month immunizations this morning.

There is a possibility...

That Aiden will be coming home next week.

I am so excited at the thought of our little family all being under the same roof.

Aiden's doctor told us today that her plan is to wean his oxygen to 1/4 liters per minute by the end of the week (he is on 1 1/2 currently) and to send him home sometime next week. On oxygen of course and a feeding tube. She thinks that this point he would benefit more from being home even if he is not quite 100% ready yet. We will have to learn how to insert the feeding tube through his nose, work with him on feedings and he will be on a heart & respiratory rate monitor - but at this point we will do WHATEVER! We are just hoping that weaning his O2 goes smoothly and this week is uneventful so he really can come home. We are hoping for the best but know that it might be delayed if something happens.

Aiden is 4 months old today and weighed 5 lbs. 15 oz. WITHOUT his casts and sling on. He is getting to be such a big boy! He got his casts taken off, his feet re-positioned and new casts put back on. It was quite an ordeal, but Aiden was so good through the whole thing - he didn't cry once. They had to soak the old casts for over an hour to get them off, so technically Aiden got his first "real" bath today in a little tub of warm water. The orthopedist said his feet look really good and the left one almost looks like it is in a "normal" position after only one week!

Getting his casts off - he did so good!

This is his "bad" foot after just one week in the casts

Decked out in his I love daddy shirt :)

A busy week

Aiden and Daddy

Aiden had another big day on Monday. The orthopedist came to see him and his little feet got casted. His feet were placed closer to neutral alignment (where the foot is straight and in front of his shin) and casted in that position. In 2 weeks the casts will come off, his feet will be placed even closer to neutral alignment and re-casted. The process will happen every 1-2 weeks, depending on how fast Aiden is growing and will continue until his feet are where they totally in neutral alignment, usually about 8 weeks. His clubfeet were not something we had thought of that much, since so many other things going on with Aiden were life threatening. I finally did some internet research on the subject and found out that Aiden's are not that bad at all, his look pretty mild in comparison to others I saw, in fact the orthopedist said his left foot is not actually a clubfoot - just not positioned correctly (he called it a rocking foot), so his left foot will probably be corrected before his right foot.

Aiden and Momma

The orthopedist also found out that Aiden has a dislocated hip on his right side. Without any amniotic fluid for so long his right side was pretty squished in there and the ball of his femur did not grow correctly into the socket, no cartilage formed between them making it easy to slip the bone in and out of the socket. He is now wearing a special sling that keeps his hips in the correct position for the cartilage to grow and correct the problem. The orthopedist said that it usually takes about 3 months to correct, but it also depends on how fast Aiden grows.

Aiden in his casts and sling - momma is going to find a way to make it cuter :)

Aiden is back up to full feeds (50mls every 3 hours) and off the TPN and lipids - so no more IV...yay! He bottlefeeds for about 20 minutes and whatever is left over is fed to him through a little tube in his nose that goes down to his tummy - it's called gavage feeding. He usually takes 1 or 2 whole bottles a day and gets down about 20-25mls of the others and is gavage fed the remaining 20-25mls. His doctor says he is doing pretty good considering he has only been at it for a week :) He can go home on the gavage feedings, we just prefer that he doesn't, but feeding him might prove to be a challenge in the future. He weighed in last night at 5 lbs. 13 oz. although the casts are adding some extra weight!

Almost 4 months old!

His oxygen requirements have gone back up at Mercy. We are not quite sure why. When he left Sutter he was on 2 liters per minute at 22-23% oxygen, at Mercy he is on 2 liters 30-35% oxygen - sometimes even 40%. His doctor mentioned that he had not gotten his diuretic since he got back and he may have some extra fluid built up in his lungs, so he was started back on that. I was told we should be watching the liter flow rather than the O2 percentage, as he can come home on low flow oxygen, so the plan is to work on reducing his liter flow to 1/4 - 1/2 liters per minute and get him home!

All fixed up and back at Mercy

The nurses at Mercy made him a welcome back sign

Aiden's hernia surgery on Thursday went well. He was off the ventilator and breathing on his own again right after he was brought out of surgery. He wasn't on huge pain medication afterwards like his last surgery, only tylonel, so after a good sleep from the anesthesia he was acting like himself again that night. Hopefully, that was his last surgery for a long time.

He was transferred back to Mercy on Friday morning. The nurses were so happy to see him. He is back on bottle feeds, getting down 15 mls every 3 hours. He is still on his TPN and lipids through an IV until he is back up to full feedings - before his surgery he was getting 14 mls every hour. He is still learning how to take a bottle and it takes him 25-30 minutes to finish his 15 mls. He falls asleep alot and at the end we kinda have to force feed him - it takes alot out of the little guy :) Our main priority right now is getting him back up on his feedings and teaching how to use the bottle.

Dinner last night...

Aiden licking his lips after tasting the milk :)

We will talk to his doctor when she is back on Wednesday to find out what the plan is for getting him home to us! Hopefully it won't be long now that he is all fixed up! He is ready to be a normal baby. He loves it when we hold him and has started to realize when we are leaving and fusses and cries until we pick him back up - it is so hard to leave him at night, hopefully soon we won't have to. We are all ready for his homecoming!

Some pictures

Aiden started getting milk again today - 10 mls every 3 hours from a bottle, not a tube :) He is up to 5 lbs 6 oz now. His hernia surgery is tomorrow morning and the word from his surgeon is that he will be transfered back to Mercy sometime on Friday. Although he is doing really well at Sutter, we will be happy to get back to Mercy, it feels more like "home". Since the last couple posts have been photo-less, here are a few pictures we took today of Aiden's bottle feeding adventures, etc...

Momma feeding Aiden

After lunch...sleepy baby

Daddy's turn

"What's momma doin' with that camera?"

Aiden's tummy post-surgery - if you look close you can barely see the scar. Babies heal fast!