Dreams and False Alarms

As I sit in the dark with 6% battery...

Isn't that silly? It's going to eat my post when it shuts down, and still I persist. It's 6:30, it's dark, and the house is still asleep. My tea is cooling, but I dare not disturb my own peace by having the microwave beep. The boys are three. Truly, madly deeply three. Ace is a songster. He sings nearly constantly. A mix of all the places he learns songs:old MacTonald/Eine am tev ot/elevator elevator way up high/Hanukkah oh Hanukkah/happy birthday/bubble space bubble space is just for me. And loudly. so loudly. Juice is our little engineer. Always building, figuring, planning and executing one thing or another. They couldn't be more different, which is just what I wanted. But let me admit this to you right now: this is really hard. So hard I have doubted myself right down to the ground and then some. I had to go to a stress management class for moms because I was turning into the worst aspect of my own mother, and I was terrified and ashamed of myself. Luckily it helped, and I remind myself often that it's my job to stay calm, and it's not my job to win. That last bit is the meat of the matter! I thought "no, it's my job to win!". Wow. That is a recipe for struggle right there. So I've been working on that, and it really has helped. The boys are in preschool three days a week, and they are growing by leaps and bounds. They are potty trained, can dress themselves, pour their own milk (from a little pitcher), and are on the way to being able to make pb&j's! But, much to my distress juice has a classic toddlers diet, and will eat fruit but no veg, and can spot green things a mile a way. His brother does eat vegetables, and fruit, and a lot of nuts, so at least I know it's not all me! And what else? I went back to work very part time before their first birthday. It's been good, and bad. I'm a therapist. I love the work in the room with clients, but I am a really distracted business woman. So basically, it's a hobby, and it's draining us financially, and it's leaving me stretched thin and depleted. So as of June 1, I'm closing my practice and I'll be a real life sahm! Oh the groceries and laundry I will do! Really, I am looking forward to that. Kind of odd. In another way, I think it will help with my stress management. I am not anywhere enough to get anything done. The rhythm of my days is pretty chaotic. Also, my mom died. February 11. She started to feel sick last summer, and hen her back started hurting, and through a series of really quack like moves her doctor made the whole situation worse by not even following up on the epxray that showed something fishy at L-5. my parents refuse to sue him. But a strongly worded letter, letting him know what a fuck up he is shall be landing on his desk in the next few months. So I'm here, really needing to write, hoping to find my writing legs again, and hoping there is someone out there who wants to say hi.

So, it turns out, the astrologer was right

I've alluded to some pretty severe physical problems that I've had since the boys were born, but it wasn't until early July that I knew why: I now have Rheumatoid Arthritis. It turns out that for a person like me, having my immune system suppressed during pregnancy had the effect of my body manifesting yet another auto immune disorder.

The astrologer reference is this:

About two weeks before I started the cycle that resulted in my boys, I was at a local holistic pharmacy and there were lots of people selling and sampling lots of things. One person was a health astrologer, and she disclosed that she'd also struggled with infertility, and decided not to have children. She said that in my chart it was pretty clear that if I did get pregnant that I would have some long lasting health effects. I was a bit shocked, but given how she described her own IF aftermath, I thought perhaps this was just sour grapes. Ya, not so much. I don't usually put much stock in astrology, but I must admit, she got it right.

About the time that the boys both came home, aprox 3 months after their birth, I started to have excruciating pain in my hands (as well as my shoulders and elbows, but it turns out that was other crap). My fingers would swell and get stiff, as would my feet. I just chalked it up to fibromyalgia and the sleep deprivation and the normal stress of breastfeeding, and over using my hands for expressing during pumping.  Turns out, that was the onset of the RA.  It starts in the hands and feet. It is at its worst when you are at rest, unlike regular arthritis which gets worse the more you use the joint.

I suffered and beat myself up, and let it be said, took care of my babies, with some pretty messed up hands, for quite a while. It wasn't until late June that I decided to go see my Rhumatologist and see if there was anything I could be doing for my Fibro that would help with the hand and foot pain (I thought maybe I could take an antidepressant...that is the typical treatment, or maybe a course of prednisone). He looked at my swollen and crabbed fingers and said "Well, sometimes pregnancy tips off Rheumatoid Arthritis, lets do the blood tests to be sure." So we did, and three days later, I had my answer. Ugh.

The one downside to the drugs is that they are not compatible with breastfeeding. My doctor felt comfortable with me breastfeeding through August, but didn't want to wait much longer to start the meds--my joints were at risk. The prednisone controls the pain to some degree, but doesn't suppress the immune system. I pushed through July, but near the end it was clear to me that I was in more pain than was healthy. And the boys were going through a bitey phase and I just said "buh bye" to breastfeeding. Oddly enough, my last nursing session was on my 9th wedding anniversary. It was with Ace, and for once, he was quite sleepy and contented during the nursing session. It was a sweet note to end on. I filmed a last nursing message with each of the boys.  Within about a week I found myself really energized, and physically feeling a lot better than I had in months. Breastfeeding was exhausting, and given the double whammy of fibro and RA, I don't have a huge reserve.  

I'd been freezing my pumped milk for months, so we actually had enough frozen breast milk to give them 6+ oz's a day for two months. The last breast milk bottle was last week, and I was surprised that that was the moment that felt like 'weaning'. I felt sad. Washing the bottle, feeling the extra slipperiness of the fat on the bottle parts. Knowing I had made this, and that I had nourished my babies, however partially at the end, was intense for me.

The standard treatment is to start with an old chemo drug called Methotre.xate, and if that doesn't control the symptoms, then to add en.brel or hum.ira.  Right now, I'm on the Metho.trexate and 15 mg's of prednisone to control my pain, and swelling. My dose is being raised this weekend (you take it once a week). I'm close to having my pain controlled, but there are still some very sore days and intermittent swellings. One of the distinct advantages of having gone through IVF is that I'm not freaked out by giving myself the injections of hu.mira or en.brel in the belly. Ya gotta take your advantages where you can, eh?

This felt like a huge slam, but it was also a relief to know that part of why I was such a mess after the boys came home was that I was coming down with another auto immune disorder. Oy. I'm working on forgiving myself for being such a mess. Without knowing what was going on, I really beat myself up. Left a few pretty deep whacks...

The reason it hit when it did is that their immune cells died off in my body, and when I was left with my own immune system, it went on the attack. Ever since I had mono when I was 12, my immune system has suffered with an inordinate sense of guilt...it let me down, and now it attacks with vigor, whether its my thyroid, my pigment or my joints. Oy. I wish I could tell it to forgive itself!

I'm starting back to work, very part time, in the next two weeks, and I'm turning 41 next saturday.  I'm starting to feel like I can handle this twin motherhood gig, but just barely, and that is HUGE. I have really really struggled with my confidence as a mother.  

However, the boys LOVE me! They are so attached. See me as their secure base, and want me to hold them when they get tired, or get scared or get a booboo. It's really starting to get fun! I'm getting more involved with the twins club in my area, and took the boys on my first solo outing on Tuesday. It was very edifying.

I'm also starting to think about re-tackling that paper I'm writing about infertility, and really hoping to get it published in the next couple of years. And ya know what? I never wrote their birth story. I need to do that. The 'anniversary' AKA their birthday, is coming up in a 2 months, and I'm feeling a lot of what I didn't feel then--to much to take at the time.

I'm also going to give myself permission to use this space again. I think I stayed away because I felt like I should be doing something more practical, but in reality I've been quite isolated. Sometimes those puritan habits get you in trouble (oh yes, and in the intervening months, my father has secured my "descendant of the Mayflower" status, so I really get to claim being a puritan, except my ancestors were actually after land and money, and got fined for fornication just about as often as they did for not going to church...)

Let me see if I can find some pictures to show you of my little darlings:

Ace is almost 21 lbs and Juice is closing in on 19. They are both long, but A is long and solid and J is long and slim. Both are ADORABLE!

This is Juice, getting a munch from papa.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

And this is Ace trying to get the hang of eating solid food. That's a rice cracker stuck to his forehead.

 

 

 

 

 

 

 

 

 

 

 

 

 

So long for now!

390 days ago--What a difference a year makes

390 days ago, my life changed forever. Two babies took up residence in my body and my heart. Happy one year-of-being alive my darlings.

Drive by blogging!

Hi!

Sorry for the silence. I'm hardly ever home, and even though I can, and do blog from my phone, my hands are full of either babies or my bre.asts (pushing the milk out during pumping).

If you would like to be friends on Facebook, where I can upload a picture and a description nearly one handed, send me an email at sarah at dreamsandfalsealarms.com

Ok! For a real update:

The boys are now 34 weeks old. Asa weighs 5.8 lbs and Judah weighs 4.8 lbs. Judah is behind because he had to spend a week on dieuretics to clear his wee lungs of fluid. Now he's off them, and will probably catch up with Asa in no time (he's gaining weight like a champ!)

They are both working on breastfeeding. This week Asa has take 4mls, 14 mls, 16mls, 22 mls, 26mls! directly from the milk bar! We are going to start doing pre and post weighing with Judah today. Asa is fiercely sucking on his paci during feedings which means he's made the association between hunger and his mouth!!!!!!!!!!!!!!!! Go brainstems! Their development is unfolding right on schedule, which is really nice. After everything else we compromised to have these children, I'm so happy to be able to breastfeed them.

Pumping, which is now going to segue into breastfeeding is going well. I found the magic flanges from this company: Pumpin Pal. This company saved my sanity! The flanges are shaped more like a baby's mouth and come off nipple at a more natural angle. Go look for yourselves. There is no danger of me becoming one of those moms who loves pumping, but at least I don't hate it and my breasts aren't in abject misery at all times.

Asa may be home by the end of the month...or maybe sooner? He's mastering feeding, and temp regulation, what is next is not having any bradicardic episodes during sleep for 5 days.  Every time he has one, it resets the clock 5 days.  Judah is making huge strides, but he is still on a nasal canula with oxygen, so until he's off of that, he can't come home. There is a chance they'd send him home on oxygen, but it's a slim chance, and we really don't want him home before he's really ready to be here.

This is going to get hairy really soon for the following reasons:

Judah may be in the hospital for 2 or more weeks longer than Asa which means carting Asa back and forth to the hospital every day, and managing the transition from gavage (tube in nose) feeding to breast and bottle feeding, during which I will have to pump after each breastfeeding session until they can really empty my breasts.

Hauling Asa back and forth.

Leaving our sweet Judah alone at the hospital.

Being home without both our boys.

So some of it is logistical and some of it emotional. Eventually we'll all be home together, but it feels so attenuated.

Add to all of this that beyond the normal period that most people have to isolate their preemies and newborns, because of Judah's severe lung damage, and Asa's less severe but rather involved lung damage, we are going to have stay isolated a lot longer than usual. 

One thing that I've been thinking about is the invisibility factor that becoming a mother has entailed: I felt invisible when I was going through infertility, I had lovely moments of being seen as a pregnant woman, but those were fleeting since I was in the hospital with the kidney drama and then on bedrest, and now, to protect our babies health, we won't be out in public with them much.  Honestly, this is superficial, but it is also a life experince, to be the one pushing the stroller with the babies who lites up the face of even the most crumudgenly old coot. I've seen so many others do it, and I wanted that for myself.  I was in the pharmacy and there was a mother with ther 5 month old baby, soothing him and cooing to him, and I realized, here I am again. Part of the club, but with my badge on the inside. What a different moment it would have been if I'd had one or both of my boys. A moment of connection that I could force, by inserting my status into the situation, but that is another way of being invisible.  Truly, I wouldn't endanger our boys by taking them someplace that wasn't safe for them just because I want to fulfill a fantasy, but it's a loss nonetheless.

Despite that rather introspective paragraph, mostly I'm just happy as a clam. I can't wait for the real mothering to begin. Right now it's like I have a job, but not like a 'real' mom in the ways so many of you describe, but it will be here sooner than I know.

I'll post some pictures soon from my phone. They are in the same crib! It's sooooo cute!