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: