Ok, so it was yesterday, but I was BUSY! We had his neoatal follow up visit, and he was a rock star! He needs a bit of support in identifying objects and some other speech related things, but overall, he was truly himself: right on target and playing with the next level of accomplishments. He fed the baby and imitated the doctor checking reflexes! Such 18 month old behaviors!
Last night after we put them to bed, and after the epic kitchen clean up that defines each evening, I was reflecting on the night one year ago when we finally had both our boys home. We were dumbfounded--not sure of what the night would bring, and not sure of what to do with them at all! Well, we muddled through, and here we are, one year later. Walking, talking (sometimes!), eating sausage, blueberries and toast, and generally being a delight, that's our Juice.
The pictures are out of order, and I'm out of time so I'll explain:
1) Home from the hospital 2)in the highchair with his beloved blueberries 3)WALKING!`4) last days in the NICU.
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.
So long for now!
It is way past time to go to bed. I've been up packing for our 5 day mini vacation at a river town nearby. As I was folding all the little baby clothes, and stuffing burp cloths and bibs and washcloths around the edges of our bursting suitcases, I remembered that it had been about a year since I wrote this post. And what an amazing, scary, beautiful year it has been. And I was right, I took the "one less travled by and it has made all the difference."
And here they are, Ace 19lbs, Juice 16.12 and sooo beautiful.
No time for whole sentences!
I'm hoping to steal a few minutes soon and tell you all about the big developments around here!
Ace rolls from back to front, and front to back. Juice is rolling, but still working on back to front. He's also screeching, and yesterday started "bbbbbbaaaaabbbbbaaa" ing!
Ace is 17+ lbs, and juice is 15+ lbs.
Mama is not posting her weight...
More soon. Really!
I don't like to call myself stupid, but that is the phrase I'm parodying, so there it is.
There are two very real reasons I'm rarely writing, but then again, I think it goes deeper.
Blogs are fueled by emotion. The best infertility blogs blend either humor and pathos or just pathos and sheer volume of words/posts. My blog has always been a place were I wrote somewhat carefully thought out, carefully felt out, posts that cleared the decks for me, and opened a connection to you all. Back in 2008, Blogher was near my town,and I went to have dinner with the awesome Cecily and we talked about my blog, and hers and she said something like "I just can't read IF blogs, it's just so painful." I think Tori was 2 at the time. I get it now. I really get it. .
So I've been thinking about why I don't write more. I truly wanted to keep this as a journal of our first year, I wanted the boys to be able to read through this blog and feel as if they can see their little lives unfolding, and in turn, know me.
But it hasn't worked out that way. When they were in the NICU I was pumping every two hours and running back and forth from the hospital. When they came home I was wrestling with breastfeeding and integrating the new reality of being a mother. And then sometimes, my arms and hands hurt so much I couldn't type. That may derail me tonight.
No matter what the constraints are, another fierce reality is that I am struggling with IF and Preemie PTSD. One aspect of PTSD is shutting down, becoming numb. I am either numb, or a wobbly weepy mess when I think about what could have happened, even though it didn't. If they had been born the day of my baby shower, they wouldn't have lived. As it was, their lungs at nearly 29 weeks were very immature. We could have lost them. Juice could have not recovered from his neumothroax. He could have died. He could have died. He could have died. It doesn't matter that he didn't, it matters that he could have. There are moments when I am so shaken at the thought of his dying that I snatch him up and kiss him and hold him and thank him for being so strong. And there are moments when my mind goes to the bad place ,and I imagine trying to make it thru if he had died. So I stay numb. And I don't write, and I don't feel.
The other piece that haunts me is that we could have never gotten to the point of having children at all. When I read about failed adoptions, embryo adoptions not working, miscarriages, all of it. It all makes my heart catch in my throat and for a moment I am that person. I am the person who pushed all the boundaries, took all the chances and came away with no child. Of course I didn't, but right now, I feel quite raw.
Of course,this all makes sense in the context of it being around the time I got my positive and my first ultrasound confirming that we had two babies on the way. Nothing quite like an anniversary to get the feelings stirred up!
The aspect of IF that I have dealt with, and does seem to have stuck, is the loss of my genetic connection. I am aware of their origins, but I don't feel threatened or displaced like I feared I would. I wonder what the donors would see, who they would see, if they could see the boys. A mother's smile? Grandfathers ears? Their own features? For me,they are new beings, fresh and new. Someday when they are older, if they choose to contact their donors, we may have the answers to some of these questions, but until then, they are just my beautiful boys.
What is still so raw, and so drenched in horror is the very real bullets we dodged of never having children at all, giving birth before they could exist on the outside, and illnesses. Two of the three are dodged, but the last one isn't.
Eileen is sitting a vigil at her daughters side while she fights a serious kidney infection. I read that and I feel so sad and scared for her, and then my own terror at the thought of one of the boys, or both of the boys getting sick, and frankly dying, shoots to the surface.
In terms of dealing with the PTSD around their prematurity, I'm planning to read Alexa's book, and let her give words to some of my experience. I just don't have them yet.
But I am here. I am loved, and loving my boys. They are darling. They smile at me. ME! They snuggle into my body, and are a miracle each and every day. In the moments when I'm overwhelmed and exhausted and feeling like I bit off way more than I can chew by choosing to have twins, I realize I could have no babies, or worse, could have lost one or both of them, and I am restored.
The boys, and my husband, are all still sleeping! It's nearly 8:15 and I've been up doing kitchen clean up with the radio and cup of tea. Bliss.
So...what's new with you?
Let me se what I can get to before they all wake up...
Eh, not so good. Milk supply has been fabulous, but direct breastfeeding has been really painful. I wrote earlier about the yeast/staph/inflamation issues I was having, and most of that has resolved, but somehow, my ni.pples are just too sensitive for tandem breastfeednig. Also, even with the frenulotomy's (tongue tie procedure), both the boys have kind of mediocre latches. I couldn't tolerate tandem nursing, it was like being pursued by two barracudas. Awful for all of us. So in the last week we've moved to alternating breast and bottle feeding, and some weaning. The process is going pretty well, but we think we'll need to take the boys off the preemie forumula because they each gained and ounce and half a day on it. And that is way too much! Ace is 15lbs and Juice is 13lbs--quite large for their adjusted age of 13 weeks!
They are both smiliing, cooing, laughing and hooting like mad little hatters! Also, they are both rolling over, and Ace is determined to SIT! He won't tolerate being cradle held, and he doesn't want to lay on the floor, unless it is to roll. He's turned from our quiet baby to loud baby, lots of demands to be a big boy! Sooooo cute. Juice is our little cuddle bug. Even at 13lbs he seems like a smaller baby, he is wirey where Ace is lush.
The biggest struggle I'm having at this point, and is probably affecitng my nip.ples, is with my fibromyalgia. I'm in a terrible loop of being in too much pain to stretch or exercise, but that is what would help me to not be in so much pain! I'm starting physical therapy next week, and hopefully she can do some release work that will allow me to start stretching and strenghtneing again. Oy. I've also started taking nortiptylin.e again. It's an old antidepressant, and I take 20mg, much lower than the theraputic dose, but it has helped me with my sleep issues in the past.
All of this body pain has made me reailize that I'm not going to be pregnant ever again, and I couldn't really live thorugh another newborn period, even with just one. A third baby has never truly been on the table, but hey, who doesn't harbor a wee fantasy of getting knocked up, or doing an FET? I sure have. I've come to realize that part of why I'd like to have another child, is that I'd like a 'do-over'. I'd like to be pregnant for the whole 40 weeks. I'd like to get so big I can see the babies move from the outside. I'd like to give birth (or have a c-secition, not picky), and come home with a big, fat full term baby. And I'd like to have another go at breastfeeding. So in someways, although I can see the appeal of never ending babies, there is a big piece of this that is about 'fixing' my pregnancy with the boys. If I'd only had one in the oven, things might have been easier, but who knows, maybe not. And I'll never know. I am in such horrendous pain. My shoulders and fingers and wrists and elbows are always swollen or dislocated or imobilized or some such awfulness. And my poor hardworking breasts can't seem to recover from the normal 'trauma' of nursing.
Please hold out some good thoughts for a dear friend of mine who has had her first IVF converted to an IUI. We've all been in that neighborhood, and it sucks.
I never wanted to be one of those bloggers who gets her baby(ies) and disappears! But alas, since my iphone is older than the hills, and my typepad app needs to be reinstalled, I have become that blogger.
Ace has been home since Feb 21, one day before their due date, and we brought Juice home on March 7th.
Holy moly, it has been nuts. Crazy, scary at times, and wonderful. The crazy is the basic reality of caring for two infants, the scary is the week that neither of them wanted to eat, before the reflux meds were on board, and the wonderful is the sweet cuddly reality of our boys.
I'll post some pictures from my phone...I think. It also won't talk to my computer anymore, so I can't get pics that way.
Ace is an intense little guy. He's the type who gets upset about being upset, all the same, he's pretty easy to reach, and weighing in at 12+ lbs! He has had a horrific case of nipple confusion, and so have I. His resistance to the breast has worn me down many a time, but through some very strategic work, mostly on his father's part, he's turned into a less reluctant, nearly enthusiastic breastfeeder. The true test of Ace's enjoyment of his food is if he 'sings' to it; he's now singing to my breast, so I'm guessing I'm in.
Juice, the one who gave us such fits of fear and worry in the NICU is actully pretty mellow. He gets upset, you meet his need, and he calms down. He has these adorable little noices taht sound a lot like our cats! There are times when we think hes cryign when he's actully just sort of hollering, kitten like. VERY cute. He is an avid breast feeder, and none too shabby with the bottle.
After all of my incredible effort in the area of milk production while they were in the NICU, things sort of fell apart when we all got home. Firstly, the reality of keeping up an every 2 hours pumping schedule when you have an infant to deal with, let alone 2, is kinda crazy. Secondly, it turns out I had/have an entrenched yeast and staph issue with my nipples, plus nerve damage from pumping with bad flanges (Med.ela flanges didn't work for my shape, but pumpin pals saved my sanity ), as well as their short frenulum latches combined with nipple shield 'abuse'. I'm finally working my way of of that with the help of APNO cream, gentian violet, diflucan and supplements. Now my supply is down, so I'm going to try golacta. Hope that works. Also, my left breast, well nipp.le is just a little wonky and hard to hold onto, but the nipple shield hurts, so that's the next bridge to cross.
I've also really really really been struggling with a reemergence of my fibromyalgia, which is of course tipped off by lack of deep restorative sleep. It's been a movable feast of joint pain--not wonderful, very demoralizing, and physically exhausting.
The hope is that we can fully transition to breastfeeding in the next couple of weeks, and I can stop pumping overnight, which is what robs me of a good hour and half of their sleep cycle...which is killing me.
They are so different, and so wonderful. Ace is dark and stormy, and MASSIVE! He's so thick! A little brick of a boy. Juice is sunny and pale, and slender and can fold himself up into a little package that fits just about anywhere.
I am so so so grateful that we had the resources, both financial and emotional to take this road. Friends are starting down the IVF road, and their story is quite different than ours, but I so hope they are the lucky ones who do one cycle and have their baby. All those years of trying, and failing, and picking ourselves and living to do battle another day has taken a toll on us. We are good, we are solid, but we are scarred, and those scars, while not interfering with our day to day loving of the boys crop up and surprise us.
I hope against hope that it isn't as long between posts, but I can't promise much. Hell, I can't even get a shower more than once every 5 days! I hear the peeps of my darling boys. Time for vitamin bottles, pj's and bed time. Pretty awesome.