Lilah is done with OT!

Well things have finally gotten back to normal now that the fair is over and school has started. There are a lot of things to tell! Dave took care of the kids for most of the fair. He is an amazing father! Yesterday he mentioned something about how taking care of the kids during the day is harder then going to work. :D

We have a new nanny two days a week and she is amazing. She was one of the few people we interviewed that Lilah took to right away. She was the ONLY one that Lilah started talking to the minute she held her. There were lots of other reasons we chose Sue, but that was really reassuring to see.

Alec has teeth! His two bottom teeth came through during the fair. I found them one day when I was trying to help him get a wagon wheel in his mouth and he bit me. SURPRISE! It explained a few of the odd behaviors from him. I thought it was just me being gone so much.

He has also started to rock on hands and feet, mostly pushing himself backwards as well as pull himself up on things. We are in the process of removing everything from the house... I mean baby proofing the house.

Lilah has really gained strength over the last few weeks. She is sitting up alone and can maintain her balance for the most part. Her OT coach said she should really only have one or two more sessions and then be done! YAY!

Speech is a whole different ball game. Lilah is struggling to eat anything that isn't a puree. She immediately gags and then wants nothing to do with eating. I have slowly given in to the struggle. I am realizing that it doesn't do any good to get upset that she isn't eating and that it's not my fault (this was a SUPER hard thing for me to realize). So we do our best and don't worry. I know one day she will get it and take off eating like nothing we've ever seen.

Both kids are doing great. Their smiles in the morning or when I walk in the door from work are priceless. We just recently took them to the doctor for their 9 month checkup. Alec was 19lbs and in the 25th percentile for kids born on his actual due date (no adjustment there!) and Lilah came in at 14lbs... just barely on the chart but we'll take it! It's hard to believe we are getting so close to 1 year. Someone had recently asked me if I had gone through the blog and re-read some of the earlier posts. I think I might have to be a few years out in order to do that. Dave pulled up one photo from back in the NICU and I started to cry. I actually even saw one of our core nurses on the fair grounds on my way home one day and I couldn't bring myself to go over and say hi. I didn't think I could make it through a sentence without losing it. Those ladies were so amazing to my kids I tear up just thinking about how blessed we have been.

Here are some photos/videos:

We have had a few more firsts at our house. Alec got his first haircut

It's a little uneven but he was squirmy!

And Lilah surprised me today as we were playing outside in the grass. I was holding Alec and must have put his sippy cup near here. Next thing I know:

She drank from that sippy cup on and off for almost ten minutes! I was thrilled!

In speech she is working on eating chunky foods without gagging and increasing her solids intake. It's been going good so far!

I hope that she keeps stealing Alec's cup because she won't drink hers for beans!

She is also starting to sit up on her own. We are still working on tummy time and rolling over but she'll get there

We are into solids!!! Lilah tried out rice cereal with the speech therapist and loved it! Since then both kids have tried out avocado, sweet potato, and banana. Alec has loved it all. Lilah couldn't stomach the sweet potato but wasn't opposed to the other two.

We visited the Gastro Dr and they told us there was nothing more they could do to stop the projectile vomiting. She just has to grow. Not the news we wanted but they were not concerned so I guess we will just keep on doing what we're doing.

Where does the time go?

Since I last wrote we've been to a pediatric Chiropractor and switched Lilah to a hypoallergenic formula. 

The Chiropractor was awesome, but there was no change in her feedings or reflux. 

The formula was, well, an adventure. Overall, Lilah seemed to be more comfortable with feeds, but she didn't take anything by bottle and the volume of formula that came out of her mouth and nose at each feeding was amazing. We have since switched back to our original formula. 

They have increased her speech and OT visits and it seems like we will be at the hospital for visits at least once a week for the rest of the summer. They have me using a very soft brush to massage her limbs along with joint compression to work on her tactile sensory. This will hopefully help with her gagging which always leads to big spit ups. 

We are also working with her and mouthing different textures to address the gagging. I gave both kids carrots the size of thick markers to try out. Neither seemed too impressed. 

They also got to try out swimming for the first time this year. Both kids did really well. The g-tube does not put any restrictions on swimming. Yay! The very next day I gave Alec a bath and the splashing continued. The whole kitchen was wet. 

Alec is starting to sleep through the night again. He is also insisting on being held at every waking moment. Almost any time he is put down on the floor he cries. He is getting really close to being able to stay in a seated position without support. He also does not stop talking. Sometimes I feel like I live with a little Ewok. 

One more quick note: Today Lilah has rolled over five times (she had taken a break from rolling over the last few weeks). She would only flip from side to side where her legs are flipped over, but her torso is only on it's side. Today, lots of flipping all the way over. She really doesn't know what to do once it happens. For me, it is encouraging to see. They have been telling me to help her roll over, but the second I would touch her back or arm, she resisted and would go back to her back. Can you stay stubborn? I think it is safe to say this is Lilah's world and we are all just livin' in it. Have a wonderful night!

Below is a little slideshow since I added a bunch of photos. The thu

What a week. I had a whole post drafted and ready to go and I logged on a few days ago to find my phone didn't save it, so I decided to use my computer to blog instead of the app on my phone... but who has time for that?!?

Lilah had a follow up appointment with her surgeon last Monday. He had me take out the old button and put in the new one. It was the first time I had to do it and it was sort of cool and really creepy all at the same time. So much so, I didn't notice that the new button is GLOW IN THE DARK!!!! A really cool concept except we have to keep the button covered so she doesn't pull it out so the glow part doesn't get activated. Oh well...

Lilah's feeds have gone back down to zero. We are feeding her five times a day now, and we try at every single one of them to get her to eat. You should see the stuff I do, faces I make, sounds that come out of my mouth... all very ridiculous. As long as it keeps her happy with the bottle in her mouth. Unfortunately, she is spitting up or projectile vomiting with almost every feed. Thank goodness it is summer. I just strip her down and feed her in her diaper. We are meeting with the pediatrician next week to come up with a new plan.

She is sleeping flat in her crib now. I have taken out the elevation and the danny sling that use to keep her up at an incline and she is doing really well. She sleeps through the night and I often have to wake her at 5am to start her feeds again. Luckily, she usually falls back asleep after we've tried the bottle and the pump starts.

Alec on the other hand is not sleeping through the night every night. He has been rolling up a storm. Even asleep when we put him down for the night he instantly rolls over. However at some point in the early morning he realizes he is on his tummy and starts to wail loudly. Sometimes I can rock him back to sleep and sometimes the swing has to do the work.

The other thing Alec is working on is teething. The amount of drool that comes out of his mouth is fantastic! Between his drool and Lilah's spit up, I am very grateful for all the burp cloths given to us.

Here are a few pictures of the kids:

I feel as if it's been years since my last post. The first few days after school gets out are always a bit overwhelming for me. I not only try to re-organize and prioritize my summer work at school, but I also start up all the work for Sweet Martha's. Now throw in three doctor appointments for the kids and you are verging on chaos.



Lilah had an eye appointment on Monday. If you recall, she has a very mild case of ONH - optic nerve hypoplasia (http://www.aapos.org/terms/conditions/83) which can cause some vision problems. Luckily that is the only thing they are looking for at this time. Her original MRI in the NICU showed her brain structure was normal.



The appointment went really well. They dilated her eyes and ran a few vision tests. For the time being "everything looks great" and she will have a follow up appointment in six months.



On Thursday both kids had a pea pod appointment. Because of their gestation, they were asked to be in a study that watches catch up growth and inflammation in preemies. They have had many weight checks and labs done in the NICU that corresponded with their normal labs so there was no additional sticking. They also took samples of my breastmilk.



Now that they are out, the study will continue to monitor their weight and brain activity over the next two years (and possibly longer if they can fund it). It is called Pea Pod because they use a machine that looks like a small spaceship with a pod type holder for the babies, that measures body fat and muscle mass by air displacement.



The last doctor appointment was a six month NICU follow up check up. Both kids saw OT to check developmental milestones as well as a nurse and doctor for general well being. Both kids are right on track, however Alec is much stronger and further along in development then Lilah. They were not concerned though. Lilah is still keeping up with where she needs to be despite the feeding trouble and two additional months in the hospital. They gave us a few things to work on her core strength and we will be back in a few months to check her again.



Lilah's feeds continue to be very little by mouth. We are lucky to get her to take an ounce all day. I've been slowly increasing the amount of formula she consumes (we are verging on five ounces). With the increase comes more spitting up. Her speech teacher said the reflux will get worse before it gets better and I'm hoping this is the "worse" part. I always knew having babies ment more laundry, I just didn't realize it was MY laundry that would be increasing! Ha!



With the spit up, her weight has been a concern for us. They want her gaining anywhere from a half ounce to ounce a day. As of right now, she is just above that half ounce mark. I am hoping the increased feeds will help us stay there.



There is another challenge we are facing when it comes to Lilah's feeds. She has now rolled over three times (yay!) and when she gets really good at it, we have to get rid of her danny sling (this is a fabric sling in her crib that allows her to sleep at an angle to help the reflux). The challenge is the night feeding. I was waking up one or two times a night to feed Lilah as she slept to get enough calories in her. Now that she won't be at an angle, I would have to wake her to feed her, which isn't good for her development. So we have moved to cue based feedings at night, meaning I don't feed her unless she wakes me.



Yesterday I woke to very loud lip smacking. She was able to go about five hours between feeds and took 20 mL by mouth around 4am. Just now she went six hours between feeds and took 20mL by mouth about an hour and a half ago (I need to get back to bed!) This whole process has increased the amount of time I am up at night but has also increased the number of hours between feeds so it's a trade off. A weight check in a few weeks will let us know if we can keep doing this, fingers crossed!



In general, despite the feeding stuff, Lilah is doing great! She seems pretty happy most of the time and has really started talking up a storm! Her smiles and laughter are increasing and we are so excited to watch her hit milestone after milestone.



Alec is going great! He is rolling over and scooting around on his belly. He is also close to sitting up on his own. The rolling thing has been trouble at night. He will wake up at 1 or 2 or 3 AM crying because he has rolled over on his stomach. A little rocking puts him back to bed.



In a few weeks we will get to switch him off the expensive preemie formula and hopefully a few weeks later start him on solids. He is also talking up a storm as well as spitting. It's is pretty cute!

Video of Lilah talking and Alec spitting:

I compared my baby pictures with photos of the kids awhile back. Now that they have put on a few pounds let's revisit them:

It's had to believe that it has been over six months since the kids were born. There is still not a day that goes by that I don't get teary eyed with how amazing they are.

Alec is over 14lbs. He is in the 50th percentile for his corrected age (they compare the kids in growth and development to what age they would have been based on their due date of February 10th). If he can get over 56 in the next six weeks, they will let us which to a less expensive baby formula and possibly start to introduce solids. He loves to swing his arms around like crazy to get all of the hanging toys to move and make noise. He is also babbling up a storm... We are really enjoying the fun noises he makes.

Lilah is doing well. She is about 12lbs and is in the 25th percentile for her corrected age which is awesome considering all of the spitting up she does. We have been increasing her volume and speed of the pump so between that and her reflux, it's been a little bit of a challenge. Her attitude couldn't be better about it. She is still fussy at times (who wouldn't be? Reflux hurts!) but her smiles even to strangers are become more frequent. She isn't rolling over just yet, but it will be any day now.

A few days ago she was on the play mat and started to pick up her butt with her legs and move closer to a toy she couldn't reach. She's a smart girl! She does not babble like Alec yet, but she does like to put out a quick scream for no reason other then to test out her voice. Those sounds are pretty funny too.

Not much is new.

Alec and Lilah both have their sixth month appointments this week. Time flies!

Lilah isn't taking much by mouth theses days although feeding time is still a happy, calm experience which is good. Last night after 15 minutes of trying the bottle, I started up her pump and noticed she was sucking on her tongue like there was a bottle there. I took a chance and put the bottle to her lips and she actually took about 25mL while her pump was going. It was strange, but we'll take it!