Who knew we were all so passionate about sleep? Those comments in the last post were very thought provoking. Except for that Eric guy.

Apparently parents choosing to sleep or not seep with their kids is a very hot topic. The way we see it, different strokes for different folks. There definitely isn’t a right answer here. Parenting is all about what works best for your family. But if we were to bring Paige to our bed, how would we procreate? Don’t you want us to have more kids? Come on! Think of all the new stories I would have if we had another. In all seriousness, having one kid in our bed would create more problems than it solves for us.

Anyways, I meant to post my experience with sleeping next to Paige a few weeks ago. Let’s put it this way, I know prisoners of war that aren’t tortured like I was when we are in the same bed. Did I mention she has a head that used to be in the 90th percentile? I have never been head butted, kicked, and rolled on so many times in such a short period of time. Just so you are aware, the Paige rule of sleeping is: 84 percent of her body must be touching yours!

When we had that family therapist out here a few months ago she said something that has resonated with me since that meeting. She provided us with 3 pages of suggestions with helping us put Paige down. Her philosophy was to use the suggestions that work for us as a family because it wasn’t her job to tell us what to do. I really like that approach because most professionals in the medical field usually tell you what to do based on the way they practice medicine. It’s usually a very absolute approach. What’s good for the goose isn’t always good for the gander, right? At the end of the day, it’s us parents that have to take all the available information and use it to make the best decisions for our children. The NICU teaches you this lesson the first day.

I’ve also received numerous emails in addition to all the comments on the last post. I guess misery loves company right? (Sarah: That was the longest email I have ever read. Thank you for putting forth that effort to help us) Based on everything I’ve read and discussed with friends, family, and specialists, we’ve tried just about everything. But, being the resourceful folks we are, there are still a few more tricks up our sleeves!

For fun, let’s describe our nighttime ritual. We try to stick to the schedule as much as possible. We eat around 5:30. Depending on how the babies nap, we usually draw a bath between 6:30 - 7 based on their crankiness. I want the babies to stay up as late as they can so hopefully they wake up later in the morning. We’ve incorporated dimmers in the house, so when bath time approaches, all the lights are dimmed. Televisions are turned off and some cool tunes are put on. The babies no longer play in the bath. The bath is now just to relax them and signal bedtime is near. About 15 minutes in the bath we pull them out and get them dressed for bed. Paige typically gets a deep pressure massage while I’m changing her into her PJs. Then we bring them into Cole’s room where we have 2 recliners. We each take a baby and brush their teeth and just chill out with them for 15+ minutes. Cole still gets a nighttime bottle and a breathing treatment, so we usually spend over an 1/2 hour with him. He’s usually a limp noodle by the time we actually put him in his crib. Thank goodness he loves going to bed. Anyways depending on Paige’s day, sometimes she can fall asleep in the recliner or sometimes she’s on the verge of sleeping. Either way, as soon as we get up to bring her to her bedroom, she’s wide awake.

The moment she enters her bedroom, she’ll clamp up on me and breathe a little more heavy. If I choose to lie next to her, she would lie with me and she absolutely loves it. However, the moment I make a move for the door, she’ll pop-up and start wailing. Whether it’s 5 minutes or 50 minutes, she has a sixth sense about me being in the room. When she was in her crib, she would cry from less than a minute to up to 20 minutes before falling asleep. I don’t want her in a big bed right now, but after watching her in her room without her knowing it and seeing her break her crib with her head and bang her head with the force of her body, there is no way we were going to keep her in that crib.

Anyways, with moving to the big bed, we’re slowly trying to train her to sleep. Basically we put her in her bed and walk out. We have a gate on the front door so we don’t close her door anymore. I’m hoping this builds her trust keeping the door open so she realizes we haven’t really left her. Anyways, when she gets up, we go back in and put her down. This goes on for a long time, but after doing it for what seems like a 244 times, you can tell she gets it, but now she’s just fighting it because she’s stubborn (like mommy) and maybe a little manipulative (like daddy). This regimine takes a lot of time to incorporate. It’s a ton of work, but we are slowly and I mean slowly seeing progress. I’m guessing if this technique is going to work, it will take at least 1 week of vigilance. The real challenge comes when it’s 3 in the morning. Paige can wake up from 1 to 3 times a night and cry for 20 minutes to an hour each time. It’s hard to muster up the strength to continue the program and not go in and sleep with her.

You have to remember, we’ve been dealing with these sleep issues now for almost 11 months. Do I think she’s having night terrors. Nope, she does the same freak out during nap time when it’s light out and she’s not asleep. Is it normal for kids this age to cry like this? Yep, but since Paige has been doing it since the beginning of the year, this is more of a Paige issue than being a 2 year old issue. Is she like this because of her eyes? Maybe, but Cole has worse eyesight and doesn’t have any of these issues. Is she like this because of the dark? Nope, she’s like this at nap time as well. This girl is extremely bright, but extremely high strung.

We’ll keep on trucking with this routine for a week and see what happens. Like the doctor said, if she’s still having these issues in the middle of the night, we’ll do a sleep study to rule out seizures (which we totally don’t think she has).

I’ll write a post tomorrow about Paige’s move to her new bed now that its been a couple of days. I want to see how tonight goes before I write about it. Better safe that sorry, right?

Paige during bedtime

So we upgraded Paige to the Big Girl Bed yesterday (queen mattress on the floor). It was not something we planned on doing or even remotely wanted to do but we were out of solutions. She had such a fit in her crib the night before she gave herself a bloody nose. And we just can’t handle the screams and body slamming anymore. So we moved her into Drew’s room; which is further away from the rest of the rooms and moved Drew into her old room. This was hard for me to do because I finally put the last touches on Drew’s room last week. We moved the bed frame out of the room and all the furniture that wasn’t bolted to the wall and placed the mattress in the center of the room on the floor.

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Paige during naptime!

Nap time yesterday went great. She was soooo tired from her swim lesson (we had a private swim lesson yesterday–everyone must be out of town?) she went down with no problem. The weird thing is that she is so noise sensitive, but in her new room we put a baby gate across the doorway and because of the gate we can’t close her bedroom door. But she slept great at her nap yesterday and she slept pretty good for Paige standards last night. The only problem is keeping her from tantruming (and to keep her on the bed) we have to be in the room with her until she drifts off. That’s great for Paige because she goes to sleep quietly but I can not do that for her starting on Monday. There is no way I can lay next to her or sit on the edge of her bed with Drew. I dread Monday because I think she is going to be spoiled from these last couple of days where Eric and I “help” her fall asleep. I would love to help her everyday but that’s not reality. It’s going to be ugly. The other good news is that when she wakes up she waddles herself over to the baby gate and yells until someone gets her. I much prefer the yelling to the ear piercing screams. This Big Girl Bed just might work. We’ll see. It has to work because I don’t see her letting us put her back in her crib anytime soon.

Well, if the queen bed doesn’t work out, there is always the choo choo wagon.

So yesterday I was bound and determined to work out at the gym.  I was so incredibly stressed out with what’s going on with Cole that I thought a workout would be good for me.  After all it’s been months since I last went to the gym and I did have a goal of losing 16 lbs by December.  December is three weeks away and I’ve still got 16lbs to go.  Anyways, getting into the gym has always been my difficulty with working out.  The logistics of opening the outer doors while carrying a child and pushing a double stroller just seemed too difficult to bother going.  But I went yesterday and made it inside.  Yippee!!  I was feeling so proud of myself.  While I was spending precious moments of my workout trying to figure out how to use Eric’s IPod the manager of the nursery at the gym came out to get me and told me I had to leave with the kids because of Drew’s rash.  Huh?  I explained to her that he’s had it forever and it’s just a teething rash.  It’s policy and I had to leave the gym, the only workout had was loading and unloading kids out of the car twice in a 15 minute period.

I was telling one of our therapists this sad tale and she asked why they were undressing Drew in the gym in the first place.  I told her they didn’t, his shirt just rode up a bit and it’s all over his chest.  She took a look at it and said it looked pretty bad and I should get him to the peed.  Our awesome peed office got him in yesterday and it turns out it’s not just a teething rash, well, kinda, but it turned into a possible bacterial infection.  Don’t freak out.  It’s not MRSA.  But we still are prescribed an antibacterial cream and heavy duty steroid ointment to clear it up.  So I guess getting bounced out of the gym day care was a good thing after all.

This whole thing with Cole has left me completely dismantled.  I just didn’t see it coming and as Eric said in his previous post, it’s like we got overconfident that Paige and Cole were going to come out of their prematurity relatively unscathed.  We still are incredibly lucky and always will be…it’s just scary when I hear words like Legally Blind.  With Paige’s prescription the doctors were saying she might not be able to drive a car (they have since said she probably will be able to), but now with Cole’s prescription twice that of Paige’s…how likely will he be to drive?  Is he going to be able to attend public school?  The same issues I had with Paige are resurfacing.  At least this time I’ve already accepted the worst with Paige so now I just need to apply that same acceptance to Cole.  The glaucoma scare is getting to me too.  Supposedly the doctor’s office is going to coordinate with Children’s hospital to get us an OR time and call me back.  With Thanksgiving coming, I’m sure they are not scheduling as many surgeries as normal which bothers me.  I called yesterday just to see if they could give me a date.  I knew they wouldn’t be able to but I feel so helpless and scared I thought it was worth a shot.  I think their exact words were “ma’am did we tell you we’d call you with a date?”,  well yeah but, “then ma’am we’ll call you as soon as we have a date”, well yeah but did you know they are saying possible glaucoma??  After reading more on glaucoma on the scary internet, I have so many more questions for the doctor too.  I just need this glaucoma check soon before I go crazy with the “what if’’s” and we can move forward with whatever comes at us. 

Another thought:  we always kind of attributed Paige’s personality quirks with the possibility of her vision impairment.  It could still be that she has more anxiety due to not seeing well…but now that Cole’s vision is twice as bad as Paige’s….why is he so calm and pleasant?

We had our 6 month follow-up with the eye doc.  Saying it didn’t go well would be an understatement.

Let’s start with Paige.  Her prescription didn’t change.  She’s still a -6 in each eye.  I’m not sure I’ve mentioned this before, but Paige has Nystagmus.  Nystagmus is an involuntary shifting of the eyes.  Basically Paige’s eyes shift uncontrollably left to right.  Here is a video of what it kind of looks like (note: that’s not Paige’s eyes, but some random person).  When Paige is stressed or really tired, the shifting gets a lot worse.  Another side effect of this condition is something called the null position.  Basically since Paige’s eyes are in a constant state of motion, she’ll tilt her head to compensate.  So instead of looking straight ahead at something, she’ll tilt her head up and to the right to compensate. There is no cure for Nystagmus.  There is a surgery where they detach and reattach the eye muscles that help stabilize the eye movement and help correct the null position.  If Paige’s eyes keep getting worse then we’ll probably be having some sort of surgery in the next 6 months.  The past month her eyes have seemed to have gotten worse.

Then there is Cole.  Cole’s prescription has become much worse.  He’s now a -10 and a -6.  The doc thinks he may have glaucoma.  I just started reading about glaucoma tonight and I can pretty much tell you it scares the shit out of me.  There are so many uncertainties from this potential diagnosis.  Here we go again talking about blindness.  Not in a million years would we have thought we would be talking about Cole like this.  For the doc to correctly determine if he does have glaucoma, he’ll probably be going under general anesthesia next week.  Since there are so many long term issues with not treating glaucoma early, we are trying to get that surgery scheduled ASAP.  On the flip side, if he doesn’t have glaucoma, he’s becoming super nearsighted which is also very concerning.  You can choose extreme nearsightedness behind this door or you can choose what’s behind the mystery door…both are a losing proposition.  If he does have glaucoma, he might have to have tubes in his eyes the rest of his life and manage the disease with drops.  I have no idea how that would work.  Anyways, the course of treatment will be decided once we get an official diagnosis.  As it stands now, with his nearsightedness, Cole’s legally blind.  Not sure though as he seems to see things just fine.  Everytime he rubs his eyes, is it because of the pressure?  Is he in pain? Could this be anymore confusing for us as parents?

During the first year of life we were left wondering what the long term outcomes of P & C were going to be.  As we have watched them grow, I have to say thoughts of what they won’t be able to do has escaped my mind.  Now they all come flooding back with one little doctor’s appointment.  Sometimes being a parent sucks as there are so many things pertaining to your child’s well being that are so far out of your control.  When is it supposed to get easier?