I have heard from many that my abrupt ceasing of updates about Baby Dominic has thrown a wrench in their morning routine. They say they no longer have anything to look at in the morning with their cup of joe (sorry!) and have requested updates again. So, for all of you, and for the sake of my own sanity, I will try to start back up, while simultaneously giving me that creative outlet I so need. I am transitioning all updates to this new blog I have made for Baby D, so please subscribe to it (should be a button on the right side of this post) so you can be notified of any new posts.
It's not that I wanted to stop writing, it's just that being home these past two weeks have been a time filled with joy, exhaustion, love, being overwhelmed, beeping, and adjustment. We got so used to our old new life that our new, new life has taken a bit to settle into. I am having to re-get used to being at home with the kids all day (well, except for school days...), learning how to manage the new routine of having someone in our home all night and the first half of the day, and am dealing with the inevitable changes our kids have gone through during these last 4 months. But now, I feel like we are settling in. The kids seem to be calmer, less anxious and it is so nice sitting down as a family, all 6 of us, and having dinner, or reading a book, or anything else.
As far as the nursing goes, it isn't as weird as I thought it would be. All of our nurses are really great and I have been able to make peace with the fact that they are here to help, and while I have them here I need to be doing stuff I can't do when they're gone. So, I clean, spend time with the kids, nap sometimes. It is weird though, like having a babysitter watch your kid while you're home. I have that whole guilty complex, like I should be the one taking care of his every need, not some stranger. But I also realize that this new life can burn you out FAST so I am trying to take the time I have, when I have it. With all that being said, it is a little weird to have someone always there... when I bathe him, or cuddle him, or sing to him. I just try to remember that this is our home and they are guests, so I do what I normally would do. I walk around in my PJ's, treat my kids like normal, and love on Baby D like normal. And with it being our home, I am kindly assertive about certain things, like the way we like him fed, or the fact that we don't allow shoes on the carpet in his room. I have found it easier than I thought I would setting boundaries while being friendly and respectful. Really I should attribute that to the nurses, they have all been so accommodating and professional.
So, most days we have a nurse come at 10pm til 6 am for the night shift and then another nurse comes from 6 am to 2 pm. As you might guess if you see the time on this blog, our nurse for tonight called in sick, so I am up with Dominic. Tomorrow my parents will take the kids and when the day nurse gets here, I will sleep. Speaking of parents, have I told you how blessed I am to have my mom? She comes over everyday after the day nurse leaves and stays with me until Mike gets home. Really, there is just no way for one person to watch all the other kids, cook dinner, and do normal household stuff with Dominic... at least no safe and attentive way. He is constantly needing something and he has to be monitored so closely the other kids would be neglected. I love my mom.
So, as far as the docs go... we went for an evaluation for a head re-shaping band last week to treat his plagiocephaly (or mis-shapen head) caused by the prolonged hospital stay. I knew that I should have been turning his head more when he was in the hospital, but I delibertely made the choice not to because for a lot of it he was so uncomfortable and in pain I just didn't want to move him from his comfy spot. So, lesson learned: you get a hole in your neck, your crazy pediatric PT mom won't worry about repositioning too much ;/. The PT who evaluated him said he has mild plagiocephaly and she is on the fence on whether or not to treat it, but even if she wanted to she couldn't. They now use a 3D imaging machine to get the current head shape that they then use to make the re-shaping band. To use this machine though the babies need to have some sort of head control, and oh yeah, they need to be able to have the neck uncovered. Not so cool seeing as the trach tie that is holding the trach in that is keeping him alive is around his neck. Apparently only normal kids need these bands because no provisions were put into place in the design of this method that allows for children with special needs to be imaged. Thanks. So, the plan for now is to come back in 2 months and hopefully he can have better head control and we will re-assess.
Speech and Occupational Therapy has come out to evaluate him, and we are still waiting on Physical Therapy. I am excited about our ST and OT, they both seem knowledgeable. I think we will probably start with the therapy the week after Thanksgiving... woo hoo! As I mom, I have total brain farts about PT stuff when it comes to my kids. I was talking to the OT and was like, well, he shouldn't have head control yet, he's only 4 months. Then I realized that was totally wrong. Indeed he should. He is developmentally delayed, but he is my baby so I just can't see it.
We also went to the endorcinologist, and as you can probably guess nothing exciting happened there... I will spare you the boredom of that story. The Opthamologist though was a little more eventful. He assessed Baby D for quite some time, then decided to dilate his pupils then assessed him more.. total with him about 30 minutes (impressive). I have been thinking for quite some time that Dominic can't see well. A mom just knows these things. The doc said that he is extremely far sighted and that he has cortical visual impairment. He's not sure the extent of it, but he did seem sure that he does have visual impairment. So, cortical visual impairment is different from normal blindness because the problem is coming from the brain, not the eyeball. So, either in his brain, or on the way to the brain, the info is getting lost causing his brain to not recognize what his eyeballs are seeing. The doc is sending us to The Retina Foundation in Dallas for a more specific test that will quantify how much he can see. Apparently they will put contacts on his eyes and somehow measure his level of vision.
Next week we have the plastic surgeon, Gastroenterologist, Neurologist, and Cardiologist.. all before Thanksgiving. Well, by now you all probably are having vision problems too reading this ridiculously long post, so I'll cut it off there. I will try to write every day, or at least a few times a week, to keep you all updated on our sweet little man. Thank you for all of your support and prayers.
In the Sacred Heart,