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May 05, 2010 12:15

See, I say it'll be like a week until I update and it ends up being nearly two months. I'm hopeless.

I love being pregnant. There is very little that is more amazing and wonderful to me in this world than being pregnant. Feeling the movements, watching your belly get contorted by the gymnastics the baby is doing, knowing that you're going to have a new baby, and so on. It's just awesome.

However...I'm in a lot of pain and it sucks. None of my normal daily meds are pregnancy safe (all at least class C), so I've been living off of 1500mg of tylenol, every 4-6 hours, for the last 30 weeks. I haven't taken tylenol for pain relief in years, because it's so useless.
I've been taking multiple hot baths daily; just to try to relieve pain for only 15-20 minutes at the most. Anything to give me any relief. I use arm crutches on the more rough days and we've shortened any public trips so I don't have to walk as much. I've used the wheelchair carts in stores as much as I can, but it's pretty much impossible to hold Lily (especially in her stupid hip brace) while trying to steer one of those, so I haven't been able to as much as I need to.
It takes several minutes for me to even turn over in the middle of the night, due to the searing pelvic/hip pain. When I finally do get from one side to the other and relax, I can HEAR my hip grind downwards, only partially into place. After having the triplets, I was left with almost a two inch separation where my pelvis comes together in the middle. I can pretty much bet it's more than two inches right now.
It hurts to sit, to lay down, to move, to walk, to do anything. I'm in so so much pain.

I wish I could say that I can't wait till the pregnancy is over so I'll be out of pain, but I know it will linger for at least 6-12 months, just like it did last time, and it will never fully go away. My pain gets progressively worse after anything is done to my body and it can't go back to how it was before. Plus, I can only take one of my normal meds after birth and not as often or as much as I did before (since it would make for a super sleepy baby).

I also wish there was something that helped me. I can't do chiro's (and it doesn't help anyway) because of my joint disorder, massage doesn't help, I won't do acupuncture (*shudder*), and I've pretty much tried everything else. I hate chronic pain.

Anyway, enough complaining.

I've got a 'feeling' that something isn't typical with this baby. I don't know if I'm scared of something being wrong because of our experiences already or if something actually is. I have recurring dreams of the baby being born and she has Down Syndrome. Not something I would have a hard time dealing with (Jeremy would though, simply because he is already terrified of having another SN child), but it's still something. I've had enough of these dreams and feelings that I think I will be a little surprised if the baby doesn't actually have Down Syndrome. And no, I've not shared these feelings/dreams with Jeremy and don't plan to until after she's born and she's either typical or not.

Because of these feelings and my paranoia, we've had two ultrasounds (no other testing and wouldn't have ever gotten anything else anyway) to make sure there are no birth defects that would cause a need for a NICU, surgery, or something like that immediately following birth. Everything looks fine, except I have this funky scar tissue that is normally only seen in women who get pregnant right after D&C's or abortions. In the last ultrasound, they were looking at it closer to make sure it was just this scar tissue and not amniotic band syndrome (one of my massive pregnancy fears and it's also more common in women with my joint disease). Of course, the tech can't actually tell you anything, so I have to wait for the Dr report. There are no missing fingers or limbs though, that they can see, so I'm going to pretty much assume that even if it is ABS, it's so so very mild that it's not causing issues for the baby, which would be my only concern.

I'm currently 34 weeks pregnant. That's just amazing to me. It feels like yesterday that I got pregnant and here I am, almost going to have a newborn. It's going by way too fast.
I have everything I could possibly need, and more (cause what does a tiny baby really NEED, yk?), so I'm set as far as the baby goes. It's just every else that's making me panic. I need to rearrange our room so Lily's medical supplies and equipment aren't taking up the majority of it, I need to install the carseat now because there's no way I'm doing that in another 4-5 weeks when I probably won't even be mobile, I need to clean the house, get more hangers, put away the winter clothing, build my garden beds, get dirt for my beds, finish getting my seedlings started (I'm already 3 weeks late on that), I need to clean my office completely, donate a bunch of stuff, and so on. My list is getting longer as my time is getting shorter. Everyone is telling me to chill and I can do a lot of this later, but I know it won't happen. Jeremy is too busy, so I have to do 99% of this on my own. None of this will ever get done if I don't do it NOW, while I don't have a newborn to take care of. It's very overwhelming and frustrating to me.

Off of me, onto the kids:

We have had a really shitty time recently with Lily. Slight (as slight as any story regarding Lily can be) backstory here, for those who don't follow her closely:

Lily's gut has progressively shut down since her injury (4 1/2 months old). It started with just not being able to tolerate large amounts in her stomach at a time. Like, the boys would be drinking 4-5 oz bottles and she could only get fed (via g-tube) 2-3. Even then, she would puke if she laid down on her back, stomach, or if you really just moved her after feeding her. Then we had to slow down her feed to over about 1 1/2 hours. Then we had to put it at only 2 oz, at the most. Then 1 1/2 oz. Then 1 oz. Then a constant feed over about 12 hours, then 18, then 24. Eventually, we got to where we were giving her about 2 1/2 teaspoons an hour into her stomach and she was STILL puking it up. So we switched to a GJ-tube, where she gets fed directly into her small intestine and bypass her stomach all together.

That worked well for about a month, we were able to feed her about 50-60 ml's an hour (2 oz). Then she had her first hip surgery, which just made everything go downhill very quickly. She started vomiting massive amounts of bile every few minutes, all day and night. Ended up with an ulcer from the pain medication, so then was puking blood. Got that fixed with an internal glue type medication, but that made things even worse. She puked loads of bile about every 5 minutes for almost 6 months. We got the puking down to only a few times a day, but she'd ruined her teeth by that point. The back ones are brown and black and the front ones have brown lines all over them.
By that time, we were having to drain her stomach constantly into a drainage bag and she was only getting 40ml's an hour (slightly over an oz) into her intestines, but it was also slightly diluted with water now.

We switched to a high calorie formula, since she was losing so much weight (she was 33 lbs at the time of surgery), so it was 45 calories an oz instead of 30.
That worked for a couple of weeks, but we kept having to lower her feeding rate or dilute the formula more and more. Before this last hip surgery, she was at 50/50 dilution and only 35 ml an hour, but only for 12-15 hours a day. Any more than that on any of those things and she'd start a vomiting cycle. She actually pukes bile mixed with formula, which means that her intestines are backing up formula into her stomach.

After this surgery (which I'll talk about in a second), we had to drop off to 30ml an hour, but nothing less than that. Then she got a line infection (which I'll also talk about in a second) and put on the antibiotics. She started the vomiting every 5 minute thing again, so we took her off feeds completely. I very slowly started them back up, but cannot get her past 20ml's an hour (two teaspoons less than an oz) and she's still 50/50 with the dilution. I can also only give her about 10-12 hours a day on the pump. This puts her at only getting about 200-240ml's of formula/liquid into her gut daily. Because of the dilution, it's only, at most, 180 calories a day.

She had gotten down to barely 22 lbs after this last surgery, before starting the TPN. So an 11 lb weight loss in a year. She'd started getting bad bruises on her spine, elbows, and tail bone from how much less fat there was to protect her.

Ok, backstory over. A little while back, I had posted about Lily's hip re-dislocating, even with the hardware in that they put in last year. The surgeon wanted to redo the first surgery (breaking both femurs, cutting out a triangle wedge, angling the legs outwards, and screwing them into place). She would've needed to be in another body cast for at least 6 weeks, like last time, and would have the same pain issues she had last time as well. I basically said, fuck no, and told her to come up with something else. We finally chose to take the hardware out (plates and screws), try to place her hip back in socket, and do a left leg tendon release to try to keep her leg in socket. Then she is to wear a leg/hip brace all the time. I agreed to this only with the surgeons agreement that they would really take care of her pain this time, since they fucked up so bad last time with that.

She agreed. And she lied. Less than two weeks of pain medicine isn't 'taking care of it' when Lily was on narcotics for over 8 months last time and STILL had pain.

Thankfully, I finally was able to get a palliative care team through Lily's hospice program here (long term hospice, not 'dying hospice') and the Dr there is managing her pain wonderfully. She gets as much oxycodone as she needs, without me having to spend hours on the phone and at appts, arguing for it.
We still can't straighten her left leg though, it's still not in socket, and it's still painful for her. Because we can't straighten it, she can't use her stander. Because she can't use her stander, she won't use her switches. Which means she gets to do pretty much nothing. She can't play with her toys, can't 'talk' to us, nothing. I'm so mad at this surgeon. Lily didn't have any hip pain or problems before the first surgery.

During the hip surgery (March 17th), Lily also had a central line placed to start TPN (IV food), since she can no longer tolerate enough calories to sustain her via GJ tube.
It's a catheter that's tunneled under her skin, comes out of her chest, and goes into the top of her heart.

On March 23rd, she was readmitted to the hospital for an infection in her line (Staph Aureas), which was likely 'put' there during surgery (where the majority of all infections happen). She was inpatient for 5 days, when I finally convinced them to let us go home, since they were doing the same shit I could do. She was on IV fluids and antibiotics for 14 days total and was not fed via GJ-tube for almost all of that time and nearly a week afterwards.

Just 16 days after coming home from the hospital, we had to go to the ER because the cultures from her line were growing something else. Sat in the ER for a looong time, got more blood drawn from her line, got the antibiotics, and finally got home again. That one turned out not to be a real infection, just a contaminant.

She has had two yeast infections since the 23rd, horrible horrible diarrhea (which is saying a lot since she always has diarrhea), and very little gut function. Most days, I can hardly get her gut to tollerate pedialyte, let alone any actual formula. Thankfully, her liver still is looking great, so we're not too worried right now. Just frustrated.

The other kids are doing great/crazy. Dakota is finished with her kindergarten stuff already (has been for about a month) and we'll get her 1st grade stuff in a couple of weeks to start. She is so very smart, amazing, and hilarious. She's also been incredibly difficult lately. Going anywhere with her is a massive headache, even putting her in the car is a fight recently. Getting her to do anything helpful around the house (or even just NOT doing destructive things) is impossible. She's kicking, hitting, spitting, screaming, throwing things, and just being completely nasty. Therapists have no suggestions outside from what we're already doing with her. It's just a totally unfun phase where she's in the middle of trying to be older and independent, but not yet emotionally mature enough to be.
She's right around 2 1/2 - 3 1/2, emotionally, but has the 6 year old grown up attitude. It's really tough.

Coy is so much fun. He has started creating actual pictures in drawings, instead of just scribbles or shapes. He makes little monsters, people, animals, and families. His stuff is SO cute, I've thought of putting some of it on tshirts. He's super verbal, which is SO much fun. Tells jokes that make so sense, has full conversations with me, and so on. He's also totally lazy and manipulates Max and Dakota into doing things for him. It's hilarious.

Max is a complete dinosaur FREAK. He knows practically everything there is to know about them and recites facts about what certain ones eat, what period they lived in, and so on. It's really neat (and quite annoying when he asks me questions about them and chastises me when I get it wrong). We're still having a tough time with him not being able to play on his own and taking things from other people, so he can have fun like they are. I doubt that will stop for several more years, at least, though.

Jeremy is insane. There's not many other ways to describe him. Workaholic might work too. He is still a full time student at college, but is also the regional vice president of the honor society he's in, leader of the film festival, treasurer of the student government, and is campaigning to be on the international team of the honor society. He also goes bowling every Thursday night (the majority of the time anyway) and frequently goes out of town or state for honor society things. He was in Floria for a week last month, was out of town two days in March, one day (so far) this month, and will be out of town for the 22nd and 23rd of this month. He has several more out of town or state trips planned for the next 6 months too.
He does all of this stuff, then complains when he's behind on homework or overwhelmed. He also complains that I ask him to help out too much. Because switching the laundry, unloading the dishwasher, and helping me feed the kids dinner/put them to bed is a lot. *eye roll*.
He will have 3 associates and a bachelor degree super soon. He wants to get his masters and eventually a phD as well. I'm trying to persuade him against the phD, but I never win when it comes to this kind of stuff, so we'll see.

Back onto me!
I have a midwife this time for this birth. I was planning a UC last time, until we discovered I was having a litter, and I did UP until 32 weeks and still continued with what I was doing prior to hiring the midwives.
I considered another UC this time, but my personal fear is too much that I don't feel comfortable with it any more. Not fear of birth or anything like that, just fear of something going wrong with the baby and having another severely brain damaged child and it being my fault. My midwife is super hands off and knows that I really don't want much from her though. I want her to leave me alone, only bug me when I need her to (or to check heart tones), and absolutely do NOT pray over me like a midwife did last time.

I've already got my birth tub and little kit put together. A benefit of having a kiddo like Lily is all the equipment we have at the house, should we need it. Plenty of oxygen, a heart rate and oxygen saturation's monitor (and I have a newborn sized toe lead for it), ambu-bag, suction machine (should there be any need to do that), and other stuff like that. Things that we likely will not use, but put me at a little bit more ease for the newborn-up to 6 months period.
I'm really hoping for a fat little newborn this time. 7 1/2+ lbs would just thrill me. I want rolls on a baby this time! I've had 4 skinny little chicken leg babies, I need a chubby one.

Plus, plus, one of the absolute BEST parts of this birth? An amazing photographer and one of my bestest friends, babyslime , is coming down from Canada to photograph my birth and chill with us for a while!
I'm so incredibly excited and I BETTER NOT go into labor before she can come. It would be perfect if I went right to 40 weeks or a day or so after, but not before and not much after. I will do everything in my power to make sure I keep this kid in until she can fly down here, lol.

Ok, well Lily's PT is about to be here, so I'm done for now. :D
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