Monday, February 14, 2011

my valentines

One of my darling valentines. If you look closely you can see the other one in the background. Rhys wasn't cooperating with the camera so that's about as good as I could get. They crack me up when they play with each other. Zoe has recently started climbing on top of Rhys, which is only fair I guess since he's been doing the same to her for weeks.


***Disclaimer*** If you continue reading you may find yourself in the middle of TMI. Just so you know.

Last week I had my cerclage. My OB told Cody that I bled a lot during the procedure so I should expect a fair amount of bleeding and clotting. First couple of days weren't so bad, but into Friday afternoon I started bleeding a lot (think heaviest day of your period) and had some pretty sizable clots. I wasn't overly concerned at first since my OB specifically mentioned this could happen, but then it just wouldn't stop. I stayed off my feet all day Saturday, but that didn't help. As afternoon came I really started to panic. I wasn't cramping or hurting, but it was a lot of blood. I called the after hours line and had the doctor on call paged. Luckily it was a doctor in my OB's practice and not a random. She told me bleeding up to a week afterwards was to be expected, especially with a repeat cerclage, and since I wasn't cramping or contracting it sounded fine, but if the clots were that big and I was worried I should go to such and such 24 hour clinic to have them take a look.

Even though the clinic was 35+ minutes away (there aren't any 24 hour clinics around us) I decided to go. By this time it was nearly 10 p.m. so I quickly got dressed and called the clinic to make sure they took my insurance. It may sound ridiculous that I was thinking about insurance, but if they didn't contract with my insurance it would have been considered out-of-network and I'd have to pay everything out of pocket, with nothing going towards my deductible. Sadly, the lady who answered my call didn't know diddly about what insurances they accepted so I decided just to go to the regular ER. But instead of driving to the hospital my OB belongs to, which is 30 minutes away, I opted for the one 6 miles from my house.

Once at the ER I explained my situation to the front desk and the lady quickly jumped on the phone to call the charge nurse in L&D to ask if she should just send me upstairs, since in her mind a cerclage indicated a high risk pregnancy. The charge nurse said no since my OB didn't belong to that particular hospital. Fine, whatever. But then I was (literally) told I should probably go to my OB's hospital next time. Seriously?! I'm a high risk OB patient who is currently 15 weeks pregnant and just explained I'm bleeding and clotting like crazy and you're really going to tell me I didn't choose the right facility? Once in triage the nurse checked my blood pressure and the baby's heart beat, which were both fine, and told me the on call doctor could look at the cerclage stitch to make sure all was well but he wouldn't manipulate it in any way. I was reassured the baby was fine and didn't particularly think digging around down there would be helpful to the situation so I opted to go home and see my OB Monday morning.

I got up early this morning and was at the office before they opened. During an uncomfortable pelvic exam my OB said the stitch was fine, but a polyp had formed. It was on my cervix and that was the cause of all my bleeding. There are several reasons cervical polyps can form, two of which are inflammation of the cervix and clogged cervical blood vessels. He put some medicine on it, which seems to be working thank goodness and the baby looked fine on the ultrasound. I go back Thursday to have him check me again. I'm really hoping this is a freak thing and not a sign of things to come. Just one more thing to add to my catalog of random pregnancy experiences!

Friday, February 11, 2011

updates

Wednesday I had my cerclage put in. Overall, the facility was much less formal than the place I used previously, which made for a much nicer visit. With Zoe I had an IV put in and then had to wait for an entire bag of fluid to drip before I went in for the cerclage. I hate needles and I was anxious anyway, so the entire thing was needlessly long in my opinion. I was expecting a similar experience this time, but man it was so much better! The anesthesiologist put in a tiny IV, painlessly I might add, and we were ready to go. I was immediately brought into the procedure room, they hooked up the "Michael Jackson" drug (PC or not, that is what they called it) and I was out. I woke up completely dressed, sitting in a wheel chair in a small conference room. Cody told me I'd been awake from the moment they wheeled me in, however I wasn't aware of anything until about five minutes before we left. So it seems I was asking questions and making conversation for 10-15 minutes that I don't remember. Actually, Cody told me the anesthesiologist recognized our last name and asked him if we knew so-and-so (who turned out to be Cody's uncle), and I did vaguely remember that being asked, but not until he brought it up. Completely unique experience! So, the cerclage is over and done with. So far so good, but I'll feel better after my next ultrasound to make sure the baby is still doing well.

Rhys has been on baclofen since Monday and holy crow I didn't expect there to be such a good response. This medicine affects the nervous system so it is gradually increased (and also decreased if/when the time comes) as to not shock the body. This also allows for you to determine the best dosage without giving more medication than necessary. If at any time you feel that you've reached the desired result you can hold the medication at that level. We started with half a 10mg pill before bed time and the effects were immediately evident the next morning. The tone in his legs is significantly reduced, and during yesterday's PT session he was standing very nicely in his gait trainer. The dose for Rhys is increased by one-half a pill every week, over the course of eleven weeks, for a max of six pills per day. I am very encouraged by the response, and on so small a dose. Hopefully this will make it easier and less painful for Rhys to break out of the tone pattern and use the muscles as they're meant to be used.

Tuesday, February 8, 2011

new doctor(s) for Rhys

For the last several months Cody and I have been discussing the need for a more proactive approach to Rhys's CP. Our therapists are great for the most part, and we've seen a lot of progress from Rhys in the last 16+ months. But we still don't have any one person to call the shots, so to speak, in terms of managing Rhys's care. Doctors and therapists alike have commented on how much potential (for lack of a better word) he has, we just need to tap into it. The problem is we know little to nothing in terms of his CP. I mean we know his abilities and disabilities, but how to address everything not so much.

I've long been frustrated with the fact that everyone knows he has CP, but no one wants to discuss it. Of course they will if we bring it up, but I want someone who will look at him and say that's not good enough, we need to... We're increasingly becoming more knowledgeable about things (I've gotten a lot of good info from other blogs), but no matter how much we try to learn the information just isn't readily available. I hate to say it, but several times I've felt that since doctors don't expect much out of micro-preemies they are happy with anything above baseline. And, that's just not going to work for me!

So, in an effort to get as much information as possible we've scheduled with a couple new doctors to check things out. Nothing is wrong, we just want to make sure we've got everything covered. We're not impatient - honestly those of you who know something about this type of thing know there is little sense in being impatient, and that is alot coming from me as I'm the most impatient person I know - it is that there are limited windows of opportunity when these kids are young and we don't want to miss anything.

We have an appointment scheduled with a neurologist in April. I hate that was the first available opening, but hopefully they'll have a cancellation before then. If not, it isn't that critical. I am also thinking of getting a pediatric orthopedic doctor on board just to make sure everything is/stays in alignment, but I'm not sure that is necessary right this second. Lastly, I scheduled with a pediatric physical medicine and rehabilitation doctor. Lucky us, she had an opening yesterday afternoon so I bundled Rhys up and met Cody at their office.

First impression of the office, small and quiet with only one patient in the waiting room. Second impression, we didn't have to wait long after our scheduled appointment time to see the doctor. Third impression, the doctor was very friendly with no scrubs, stethoscope or lab coat and didn't look like she was in a hurry to get out of the room. In fact, we chatted with her for more than forty-five minutes.

In summary, she thinks Rhys looks great for a 23 week preemie and believes he has a lot going for him. He has good range of movement, good head control and a spunky personality that she witnessed first hand. On the flip side he has a somewhat weak torso and tone in his legs that is clearly preventing him from using them properly. To address the leg issue we are starting Rhys on baclofen, which is an overall muscle relaxant. Baclofen works by blocking nerve activity in the part of the brain that controls the contraction and relaxation of the muscles. Hopefully this will allow him to loosen up enough to engage and strengthen his muscles in the proper pattern. And if we can loosen up the leg muscles I'm hoping that will make Rhys be more comfortable in the sitting position. There are a few common side effects possible with this medication. They are minor - sleepiness, irritability, nausea/loss of appetite - but as you can see aren't exactly negotiable so we're hoping he doesn't get any of them or we'll have to switch meds.

The ultimate goal is to identify what exactly needs to be treated and how best to do that. The addition of these new specialities should take care of that and keep us on top of things.

Thursday, February 3, 2011

Off to the races!

video
It seems they are becoming friends :)

Wednesday, February 2, 2011

table for five

Yes! I am indeed pregnant. It was unexpected and unplanned, but definitely not unwanted. If you think you're shocked, you can not possibly imagine our reaction when we found out. The discovery came just before Christmas. Nice gift, wouldn't you say? Yes, I know where babies come from. But since we needed the help of an RE for the first two, and nothing changed after my pregnancy with R&B (however brief), I never suspected anything would be different after I had Zoe. Our issues were not so severe as far as infertility goes and my RE said it wasn't impossible to occur on its own, just unlikely. So it must have been something about recently giving birth, quitting nursing and just a good ole' fluke that allowed this to happen. We should start playing the lottery. Seriously.

I am nearly 14 weeks, and will be having a cerclage put in next week. I am hoping that goes as well as it did with Zoe, but I am still a bucket of worry. With each pregnancy I learn new things and that kind of knowledge doesn't do me any favors. My mind constantly spins and analyzes. I hate the never ending worry and concern that comes with being pregnant, and I'm not even talking about the potential of preterm labor. Oh to be one of the naive ones who take for granted everything will turn out perfectly. Aside from complete exhaustion I have actually felt great. But the fatigue has finally started to fade and I can now make it through the day without fearing I will fall asleep while my kids are roaming the house.

Our newest addition is due in early August, but we'll do everything precautionary as we did with Zoe to make sure (s)he stays cooking as long as possible. Delivery goal is early July, just before Rhys's birthday. Poor kid, I hate that he's going to have to share his day but it is what it is. Our "sweet" baby is below. The u/s tech at my peri's office gets a little carried away with the sweetness of things. :)
We're very excited about our new little guy or gal, even though we'll be the family circus with three children under three. We've always known we wanted at least one more baby, we just never thought to have all the kids so close together. I know someone is laughing at us and all our plans. You'd think I'd have learned by now that we don't have the final say.

Tuesday, February 1, 2011