Delayed

As you may know, I made the call to have Zach evaluated for speech. He just doesn’t say enough to mesh with my ideas of what I think he should be saying. I made the call, and they told me a couple of things. First, he has to be a few months behind in order to qualify for services through our state’s early intervention program. If there is too slight a delay, I can still get him help, albeit privately. Second was that, despite the fact that Zach is almost 2 years old, they are continuing to adjust for his prematurity by subtracting the number of weeks of prematurity from his chronological age, then rounding down the next whole month. So while Zach is 20 months old, as of this next week, they assessed him as a 16-month-old.

Until I got the letter.

I thought it was just speech.

They said no, that he is delayed in communication and fine motor skills.

AND  that he is delayed enough for services.

They weren’t supposed to say that. They were supposed to tell me everything is just fine and I am just a worrying mother. Not that my worrying is right on target.

Here in a few minutes, I am going to get up from this desk and do a quick dusting in the living room and maybe vacuum because the case coordinator is coming by today to meet us. To explain how this all works–physical therapy and speech therapy for Zach. Further testing, even, to ensure that it is only prematurity that has caused this and not some other issue. And about a million thoughts are swimming in my head.

What was it? The breathine? Mag Sulfate? Indocin? What about the damned pain medication that I didn’t want to take but had to in order to survive that ordeal? And not only am I wondering which drug I was given, but which dose? Which injection, pill, dosage increase did the trick? Or what if I would have been tougher and held on a little longer? And if so, how much longer would have been enough? A day? A week? Where did we fall short of that threshold where everything woulld have been okay.  I thought it was all fine. Zach is almst 2 years old, and I thought I was finally past all of this. That we made it through, completely unscathed. This is so fucking unfair.

And Evan. Having a child–any child–with an autism spectrum disorder makes you much more likely to have another with an ASD. Are both of my precious miracle boys disordered?

I cannot even think about it now. Right now, I am going to put down the textbooks for a little while and pull myself up by the bootstraps. And help my Zachy.

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What I Have in Common With Michelle Dugger

Okay, I don’t know where to start with this one.

Michelle Dugger (Duggar? Hell, I don’t know) is pregnant again, this time with Baby Number Twenty.

Holy shitballs.

I won’t forget her last one. I watch the show on occasion out of freaky curiosity. They don’t get welfare or anything. They support all of their children themselves and appear to do well. The kids all appear to be well-adjusted and well-mannered. But I cannot get the last one out of my head. I was just beyond the first trimester with Zach, and looking back, it was about a month before I went into preterm labor for the first time and my problems started. All I had to go on was that I had this complicated history with my pregnancy with Evan and was foolishly hoping it would be different, though all signs said it wouldn’t be. I had already suffered a placental tear. And I watched as they delivered her 19th baby at 25 weeks. I cried. I cried as a pregnant woman fearing for her new baby. I cried as a NICU RT who has had a hand in resuscitating preemies. Most of all I cried because I was watching a family go through what we could have gone through with Evan and mercifully escaped.

And my first thought when I just found out she is expecting the 20th was, “how fucking irresponsible of them!”. I mean, yes, the 25 weeker is now almost 2 years old and doing well. They credit God for that, and I credit modern medicine. I’m glad the baby is okay. I can see how this would give them license to do it again. But then again, she came close to death multiple times. She could have been horrifically disabled and had the quality of life of a rock. She didn’t die, she has a shot at a decent life, but she almost didn’t. Why tempt fate? Why have another one, given that you have already gone through this ordeal, and chance doing that to another baby? And doesn’t the likelihood of complications increase with maternal age?

Oh.

Maybe this makes me an alarmist. Maybe it makes me practical and concerned for a yet-to-be-born child. Either way, it makes me the biggest hypocrite I know.

I haven’t had 20 kids. I have 2. The oldest almost didn’t make it into this world. The last one was a complete surprise, but we armed ourselves with the “every pregnancy is different” mentality until it proved to be the same horriffic experience. My doctors advised me that I shouldn’t have any more. Not that I couldn’t. Big difference. But then they later retracted the statement and now joke with me that it is time for another when they see me at the hospital. And just three days ago, John ‘fessed up that he really wants another one. Truth be told, I do too. We agreed that it shouldn’t be now, considering our current financial slump. I should complete my MBA first. We need a bigger house and a bigger car. We want Zach to be out of diapers and the issues with Evan to be somewhat stabilized. John needs to be working to offset some of my income in the event that bedrest happens. It needs to be done in a very controlled manner, with me starting off the pregnancy on the kind of footing one doesn’t have when it comes as a surprise. We want to first visit the OB practice and request that, since it doesn’t seem to help, I not be placed on strict bedrest, but am allowed to work as tolerated. And I will say no to the brethine pump and uterine monitor that is behind 36 hospital trips and admissions. I will accept the progesterone injections because we have no way of knowing if they aren’t behind they fact that Zachy wasn’t born until they took him out surgically. And I absolutely have to be under the age of 40. I had problems in my mid-20’s, after all. Beyond 40 seems to be pushing it too far for someone with my hustory.

Am I as bad as Michelle Dugger? Isn’t this reckless of me to even think this way? To chance something awful happening to me or to another baby? Evan was born at 34 weeks and Zach at 33. What if a third one is born even earlier, per the trend?

But we want a girl. And we will try in a couple of years. We will do so with the hope that I won’t have the same problems. That if I do, the baby will have the same luck as Evan and Zach and suffer limited effects of prematurity. Maybe we are tempting fate a little too much, also.

Role Transition

So what’s happenin’? Well, A lot and yet not so much.

The NICU stuff is winding down as we get closer to the day where we will start keeping the really sick babies. When you have a baby at my hospital, they warn you to not let anyone without a specially marked badge in to take care of your newborn. OB staff and NICU staff, as well as Peds staff all have these badges. The core NICU respiratory team is o be no different. So today, I had to go and get a new badge. The special marking? A bright pink stripe. Mine used to have a lime green stripe. How did they know pink is my favorite color? Actually, when I got it, I was appalled. my title is written all extra ginormously and the pink is glaring. Proof?

Pink means "Gimme yo' Baby!"

So not a big deal, I know. it’s the little things. I also renewed my NRP–Neonatal Resuscitation Program for those of you not in the know. It’s the fourth time I’ve taken it and it won’t be my last, as it expires every two years. The video for it cracked me up. They actually included RT’s in the scenarios with the rubber babies. As in, “Call Respiratory Therapy STAT.” And the guy who is supposed to be the therapist shows up and says, in utter robot fashion, “I…am..the…resp-ira-tory ther-a-pist. How…can…I…help?” Yeah, whatever, Dude. That is so not how it goes. I don’t wait to be told what to do. I know my role and get to work immediately. I’ll throw elbows if I have to. Same as wih the adults.

I’m sort of nervous about the change in roles. I’ll still be taking care of adults, too. But I will be on my own with the sick preemies and it worries me. I will see what could have been with both of my boys, and I will be crying a lot. Maybe this makes me less fit to care for this patient population. Maybe it makes me more fit. I guess it’s a matter of opinion. But someone saw me fit to be placed on the team. And so I shall do my best for the little ones while I see Zach’s and Evan’s faces the entire time.

Testing 1, 2, 3

Gah! I am so frustrated! As many of you know, Evan has had some difficulties of the behavioral variety. And we have Children’s Hospital just right there. In other words, the best of the best for just about anything that can go wrong with a child. It all started with ADHD and medications from the family doctor over 3 years ago. Ritalin of varying dosages, Adderall, Straterra, Concerta, back to Adderall. Sometimes it works for just a bit before it stops working. Sometimes it doesn’t work at all. And I swear Straterra made it worse. But somethings amiss. This is not simple ADHD, and after fighting this for years, I told my doctor, who made a referral to Children’s. While I was pregnant and on bedrest. And they were booked. I settled for someone else with horrible results. So we tried Children’s. Again, no appointments, and this time they advised me to call every day to see if they had cancellations, but they were booked too far out to schedule something. Again, I gave up until I tried again. More referrals, even though my insurance doesn’t require it because I elected the most expensive, most comprehensive big-dog policy. No dice. And this shit has been going on for a couple of years. I try everything for Ev. And this year, when he started school, I was optimistic that he would have a better year with his new teacher.

Until she escorted Evan out to the car after school so she could talk to us. He’s being awful in class, according to her, and I am at a loss. Do I believe Evan, who has a track record of manipulating us? Or do I believe the teacher, who may or may not have some bias against Evan in such a small, intimate school? Whatever I should do, I know one thing: I cannot do this anymore. I cannot fight Evan and satisfy the school that while his behavior is atrocious, we really are trying anything and everything here at home. I cannot deal with the turmoil that arises from telling Evan it is time for homework/ dinner/ bed/ to come inside/ to take a shower. I can’t take the yelling and the blood-curdling, murder-movie screaming. The pounding on walls intentionally to piss off the neighbors during his rages. The lashing out at John and John losing his cool because it really is beyond human ability to tolerate this shit day in and day out for literally years of your life when you have no other outlet, when home is your job and there is no escape. At least I get to go to work. But even so, I cannot take the lack of decompression all of us humans need. I work, sometimes under extreme stress, and I come home to more stress from school. And to comound it all, there is no peace in my home, the one place I should be able to relax and unwind and take a deep breath…

We called the school. We hated to, but we have our backs against a wall with nowhere to go. We told them we were going to have to take Evan out of the private school and put him in public school. To which the principal told us not to and wanted to know what was going on. She knows us well. I told her that at least the public schools have special education for kids with problems, should Evan need that. And she sounded like she was about to cry when she told me Evan is way too gifted to do that to him, and that he will get lost in the shuffle or mixed up with the wrong kids. And she’s right, but what else can I do? So we devised  a plan that breaks my heart. The next time Evan was to have one of his rages, we were to take him to the Children’s ER. Maybe then he would get seen, even if it meant he would have to be hospitalized first. How? How could I do that? How could I take my precious child to a psych ward? How? Someone please tell me. But then I got an idea, and I called Children’s 24-hours emergency intake line. And I unloaded it all to them: the breakdowns, the behavior, the manipulation. Everything. And they put me on hold while a guy got on the phone. And I told him. And the end result is that Evan has an appointment on September 6th. Yeah, just like that. Why couldn’t they do that 2 years ago? So what is the game plan?

My soon-to-be-10-year-old baby is going to be evaluated for Asperger’s Syndrome. Because I think he has it. Because his principal, though admitting she is not a mental health professional, say Asperger-like traits in Evan as well. What are they?

Well, all of this time, Evan has never been able to make friends his age. He flocks to adults or little kids, but never his peers. If he is invited somewhere, he is never invited back. This has always been the case, but we thought it was his high IQ.

He is too rigid. He seems to handle change on the surface, but if you look back later, you can see a sort of unraveling in Evan. When I graduated and started working the hours I do. When John stopped working and started staying home with him. When I got pregnant and put on bedrest. When Zach arrived.

He is afraid of everything. Last year, John’s mom came for a visit and they all went to an amusement park for a day. Evan had such a meltdown out of fear for a kiddie ride, that they had to shut the ride down to get him off of it. A kiddie ride. This summer, while he was visiting his grandma, they took him to this indoor play place for kids, and he was afraid of everything: the slide was too high. The rocks on the rock-climbing wall may come loose under his feet. The teeter-totter may cause him to lose balance. So while the kids around him played, Evan sat in the ball pit alone. Sorting the balls by color. Why is he afraid of everything?

I fight and fight with him to do  homework, but he can sit for hours on the computer, researching the Titanic and the history behind it. Or the history of aviation. Occasionally he will play games on my Facebook page, but mostly he just reads on those two topics. He’s even prepared reports for his teachers just for fun. And he will talk about them incessantly.

He has no empathy. I would be in the hospital during my pregnancy, and he would know that the possibility of Zach being born too early to survive was great. And he still would throw tantrums for silly things. To take him out to eat, to a book fair, to the mall or an amusement park. John did most of these things with him, but he wouldn’t stop because I couldn’t go. He seems to have no empathy at all.

He reads at the level of a college student. He speaks like an adult. In fact, my mother-in-law said that during his visit, he used some words to which she didn’t even know the meaning and would look them up in a dictionary when Evan wasn’t looking. But regardless of all of this, he writes like a toddler. I cannot read it at all. They had to have an 8-pocket organizer for school, and the teacher had them label the pockets with things like “homework” or “For Parents”. Meaning we are to go through it each night and filter out the stuff that is meant to come home. I couldn’t read the labels at all. I had to ask Evan to tell me what they are, and since have memorized the squiggles that are supposed to be letters. And as the years pass, it seems to get worse. Not better at all. He does cursive just fine, but the schools have stopped that.

The rage. The endless screaming. I could deal with raising of voices. I could, I think. But I cannot take the screaming. And I cannot take the feeling of loving the child so much and hurting because he is obviously hurting, but yet not liking him at all. The gut-wrenching impulse to just run away from this is intolerable. But I resist. I resist because I love him so much and I know that somewhere in there is a reason for this.

Asperger’s Syndrome, though the cause and science behind it is unknown, is linked to prematurity (Evan). It is also linked to slowed language development in babies (Evan), clumsiness (Evan again), and more.

So we are going. To test my brilliant kid for a disorder that is a form of autism. I’m scared for him. But more than anything, I want a name to this suffering, to know that there is some reason for it, that this isn’t all my fault. I want help for my baby boy.

Eventually

Our niece is having a baby girl. A baby. Girl.

And when I heard, I swear I had to be the worst aunt ever. Because my face fell. And my heart broke just a little bit.

And at first I thought, “why can’t I have girls?” And I was seriously…sad. And of course this instantly turned to guilt. Because I have two amazing little boys. Perfect, miraculously healthy little boys. What in the hell is wrong with me? Why would I think like this? And then I thought that maybe it isn’t just about the baby’s gender. I think it’s about the whole damned pregnancy experience. Not that I would wish my experiences on anyone, but it really isn’t fair. At all.

Which turned to even more guilt because there are people out there who’ve lost babies. Who have babies with disabilities. I have two preemies who are perfect. I am so undeserving. I am such a piece of shit.

John immediatey asked me if I am really that upset about not having a daughter. No.

I’m upset that I’m not ready to be finished yet.

That I don’t want to go through it again. And yet that is the only way to have a chance of having a daughter.

I’m upset that it took 7 years of no birth control for me to get pregnant with Zachary. That I’m 34 and I don’t have 7 years. That we have hurdles to overcome before I can even think of putting my family through that. John needs not only a job, but one that is capable to replacing at least most of my income for the entire pregnancy. That as soon as the stick reveals two pink lines, my team of doctors will write the order for bedrest, and so we need to wait for John to accomplish this before we can even think of it.

I’m upset because there is no way pregnancy should ever be so fucking traumatic that I have all of these issues as a result of two of them. I’m upset that it is likely that I need psychotherapy for what I thought I was getting over.

I’m upset by the unfairness of it all. Because while I thought it would make me feel better to at least be able to shop for little girl stuff, it wasn’t the same. And I kept throwing things in the cart. As if, with each item I pulled off the shelves, I would heal a little more. And I didn’t. Instead I felt the wound splitting a little more, the pain of it all feathering outward from the epicenter llike it was going to consume me. Those little pink pants with the ruffles on the bottom…you are a fucking failure as a woman. The lavendar sleeper with the tiny, delicate embroidered flowers…you cannot do that to these boys again. The white eyelet dress…it will kill you if you do that to yourself again. The baby pink cardigan…you can’t you can’t you can’t…. And so it went, until the cart was brimming with every piece of negative self-speak my mind could generate.

And this whole time, Zachary was smiling up at me from his seat in the cart. He is so sweet. Those eyes. Those huge blue eyes. But wait…They are turning colors. Flecks of green mixed with the blue. Green like sea glass. And I have only seen that eye color in one place: the mirror. He isn’t a girl. He may be the last one. But that child is all mine. And the connection there runs so deeply that I swear I can feel the invisible cords that connect us tugging on my soul when I am not with him. Maybe it’s wrong for me to have this feeling because his job is just to be, but this child will be my healing. He will make me whole again. With each smile from him, the gap in my soul started to close a little more. Eventually there will be nothing but dense, jagged scar tissue to remind me of where I have been. And it won’t matter so much any more. That’s all: just a reminder. As if I could ever forget. Eventually it will just be a story I tell when someone asks.

Eventually.

>Letting Go of Things

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It started with the shoes.

This past week, I have been streamlining our very existence. And it started in Zach’s closet as I packed up the outgrown clothes that had been loaned to us so they can be returned. And I saw the shoes. 16 pair of Pediped shoes, in various infant sizes, all of which Zach had outgrown. I lingered on them a bit. They were so cute and I remembered when he was that small for just a minute. And then I put them into a bin and moved on to the next thing. Newborn swaddlers. The source of the sleep-filled nights when he was a newborn and none of the other new parents out there were getting any. And the Boppy with which I used to nurse him. And so on, throughout Zach’s room. I tried to do this before and couldn’t. The obscene amount of tiny newborn clothes still filled Rubbermaid totes all over this house because I couldn’t stand the thought of getting rid of them. And so I started going through those as well. I kept a few things like the outfit he wore on the trip home from the hospital and the little Ralph Lauren one-piece he wore in his newborn portraits. He’ll have those when he is an adult. But the rest? It went into the bins, also. And I took all of it to a consignment shop and got rid of it. I made room for new things. The walking toys Zach is really starting to use now as he finally pulls himself up to stand and is starting to find his legs, the bigger sizes of clothes he will be wearing when he starts to take his first real steps. New, new, new.

How fitting can you get?

Out with the old and in with the new.

Now, before I say what it is I am about to say, I want to first say that I have no intention of offending anyone who might read this, and if you start to feel offended, please read it all before you come to any conclusions. But I was never this person. I honestly thought the whole organic, extra-crunchy, all-natural stuff was silly. My mom never got into any of that with any of her 7 kids, and we were all healthy. Natural childbirth? What? Why, when there are such good drugs out there? I have said similar things as recently as when I was pregnant with Zach. I think it was my way of coping with the fact that I have never had a normal pregnancy. I would tell you I didn’t give a damn as long as the baby was healthy.

I lied. I cared. Oh, I cared a lot. And I wouldn’t even admit it to myself. So imagine my surprise when I feel this deep sadness after Zach’s birth, all over the experiences I will never have. I never dreamed I would be that person. But I was. I literally had some symptoms of PTSD. Seriously. I would wake up in a cold sweat after having nightmares. It took until Zach was about 6 months old for me to stop having flashbacks. I would feel needle sticks in my hips all of the time. And I felt like I was the biggest wuss on the planet each and every time. And I was too embarrassed to admit this to anyone. I alluded to it and that is all. I endured a lot of pain for my children. For both Evan and Zach. And don’t get me wrong: I would do it all again for either one of them. But even though I would love to have a little girl someday, I will never do it again. I will not put myself, my husband, my children through that. This is a big change from what I said when Zach was smaller. I said almost immediately that I wanted another one. Not anymore.

So what has happened? Well, I realized that the reason I couldn’t bring myself to get rid of Zach’s newborn things is that I was trying to hold on. To the experience of pregnancy and new baby, the hope of a normal childbirth experience. I just couldn’t let it go. (I also think the emotional trauma of losing Ben so early in his life has something to do with this, but I cannot even scratch the surface of that because is and always will be a part of who I am.) But as I sat in Zach’s bedroom floor, going through the tiny sleepers and onesies that I had previously latched onto, I realized how silly I was being. I don’t need tiny outgrown shoes or sleepers. I have Evan. I have Zach. And just like I needed to rid myself of some of the outgrown things that had accumulated in order to make room for the new, I also had to let go of those feelings. Because there are so many new things coming our way: Zach’s first steps, first tooth, first real word, first birthday. And Evan will be 10 years old this year. One whole decade! My baby! Such wonderful memories are coming my way as my life with these two miracles continues to unfold before my very eyes. And I need the room. I need to let that weight go so I can move on.

I will always remember. My pregnancies took so much out of me. So much more than the average woman has to give of herself to become a mother. I never could understand why that was. I always had such bitterness about that. And now I finally get it. I had to give more of myself, but in my eyes, my kids are so much more than the average. And it was so worth it.

And so here I am, 9 and 1/2 years after Evan’s birth and 10 months after Zach’s. And I have finally let go. I’m healed and whole. And just like it took every ounce of my being for those boys to make it into the world, I love them with every ounce of my being now.

>Ending for the Third Time

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I am finished with breastfeeding/ exclusively pumping. It was great. It was real. We did it. I’m glad we did and despite all of the trouble, there is no doubt in my mind that I would do it all over again. I love him that much. But it’s really over. I finally got myself down to where I can quit pumping. Yesterday, I pumped twice and only produced 1 ounce total, on both sides, for the day. Yes, I’m really done this time. And to tell you how really done I am…..(Erm, I should say “finished”, because the mix-up of finished/ done, as well as the exchange of good/well are just two of my pet peeves.)

So anyway, I was about to explain how finished I am.

I am so finished that I made a phone call to a local breastfeeding boutique tonight to see how I could go about selling my pump. The big MamaJamma. The Symphony. The one that retails for $2K. And at first the woman didn’t really believe that I bought one. She said that most people who have brought them in have stolen them, that they only own one themselves and the rest of theirs that they rent out are actually leases from Medela, etc. I gave her the serial number and she called Medela and discovered that it was indeed sold to a buyer by the name of Andrea XXXXX, that it is available for resale. And she offered me $1K (and another $200 in merchandise was thrown in), which I thought was pretty damned good considering I have used it for the better part of a year. And with my employee discount at the hospital, I only ended up paying $1600. So if you do the math, it cost me $400 to use my own Rolls Royce of breastpumps for 8 months. And so I met her this afternoon and sold my pump.

I sold it.

John couldn’t understand why I teared up as I was packing it up. Because he is a man and just doesn’t get it. I did everything. I really did. And we had a good run, Zach and I. I remember when he stopped nursing altogether and I thought it was over. And then the pride I felt when he drank a full bottle of my milk and seemed to prefer it to formula. When Zach was about 4 months old, I dropped down to where I was getting 1/2 an ounce total output for both sides and I thought it was over. And I kept on. We have toured every nook and cranny of Cincinnati in order to find obscure herbs recommended online by sites advising on increasing milk supply: teas and tinctures and capsules. I remember the day John went to run errands and came back to find me completely topless with Zach in just a diaper in his Moby Wrap while I was doing the dishes. Desperate for time to do Kangaroo Care in between my crazy pumping schedule, this was the only way I could manage to do it. He really did think I had lost my mind at that point. But if it was supposed to increase supply, I was going to do it. I didn’t care what it was.

I sold my pump.

I hated the damned thing. Waking me up every 2 hours. Sucking the life out of me in more ways than one. Making it so my life was consumed with pumping schedules and ounces produced and ways to get more, more, more. But I loved the thing. Because you cannot convince me that it would not have been over when Zach was just 2 months old if I hadn’t bought it. And I am so connected to this baby, and I believe this is why. Because while my body wasn’t tough enough to maintain him during the pregnancy, damnit I was strong enough to feed us both.

I sold it because I knew that I would always try to do better, try to do more. That so long as my body kept making mere drops of milk, I would try to make ounces. I had to close this chapter.

I sold my pump. This chapter is closed. I love you, Zachary.