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Here and okay.

14 Apr

When J was a tiny baby, spending the first three and a half months of her little life in the hospital, I experienced dread, despair, agony and anxiety, almost on constant rotation. I took meticulous notes each day about her weight, her input and output, her vitals, even down to who our nurses were. These were my only toeholds in what felt like a river rushing around me. Looking back on that time, it all feels like such a blur, but one moment, one feeling, does stand out. A single flower in a field of weeds.

It was, I believe, my second time visiting her. The time when, two days after my c-section they wheeled me for the second time across the street to the Children’s NICU and I held her for the first time. And I was just filled with this sense, this deep knowledge, that she is here now and everything will be okay. No matter what we have to face, she is here now and everything will be okay.

In the weeks to come, as we waited for her surgery day to arrive, I faced simultaneous feelings of desperately wanting the day to come so we could just MOVE ON already, and then desperately wanting to delay my tiny infant going under the scalpel again. I remembered back on that very kumbayah, “it’s all good,” life-is-wonderful moment of clarity and though, WTF was that. Where did that come from? Everything might not be alright. Why did I believe that so deeply, for even a moment?

But in fact, whatever creeped into my soul that day and whispered those words to me was right. J is good, guys. J is great. Her central line was removed last June, about ten months ago. She’s now eating solid foods three meals a day, drinking regular old whole milk from a sippy at every meal, just being a normal kid. She does still have a g-tube (hope to get that out next month) and struggles with bacterial overgrowth but these are minor, minor things.

She loves… walking outside. “‘Alk! ‘Alk!,” she’s always asking. She is almost unbelievably good at learning songs and picks up on beats and words and melodies and sings them back to us. Al Green. Peter, Paul and Mary. Bruno Mars. Her vocabulary is exploding, every day. She hears a plane in the sky and says, “A pane!” And even despite the overgrowth (which, let’s just say can cause frequent bathroom trips), she’s been potty trained for a few months now and sometimes says “Oh gosh!” when sitting on the potty. She’s feisty as hell, her favorite word is “no,” and she will be TWO years old next month (though sometimes it feels more two going on twelve).

Part of me can’t believe that, while even more of me is like yeah. Totally. This girl was meant to be. She hung on through one month in the freezer, a transfer, she implanted and then survived a river of bleeding when we lost her twin, she grew like a champ in utero despite her gastroschisis, she survived months in the hospital, two major bowel surgeries, almost a year on IV nutrition, a month of vomiting before we diagnosed her overgrowth. I mean this girl’s a fighter and she doesn’t even know it.

She’s a fighter, she’s a champ, she’s a force. She is here. And everything is okay.

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The precipice.

13 Mar

Everyone I know is pregnant.

Okay, not everyone. But a great many people that I know personally are currently hosting occupants in their uteri. Which is cool. I no longer feel that familiar, infertility-induced twinge of pain when I get that news. There is a twinge of something though.

I think it’s because, when your kid reaches a certain age, it’s only natural to address the question of number two. If it didn’t occur to you first, it certainly did after you’ve been questioned about it for the millionth time, and questioned you will be.

The thing is, I can’t easily answer that question for people without going into all the caveats, nuances and traumas that influence that answer. Do we want another child? Yes, but.

Yes, but we don’t know if we can conceive on our own. Yes, but we are worried that ART played a role in J’s birth defect. Yes, but we are still slightly traumatized by my pregnancy, J’s birth, and her infancy. Yes, but we don’t know when the time is right. Yes, but part of me wants to wait until J is more aware of her impending big sister status, and we can enjoy that excitement together.

Still, I feel my heart calling for number two. I crave a newborn, and all the typical newborn things I didn’t get with J. I want another chance at a healthy pregnancy and a natural delivery.

But I know that there are no guarantees. We may face secondary infertility and we may have to do IVF again. I may get pre-eclampsia again and I may have to have another cesarean. The baby might not be totally healthy and we might have to spend more than a few days in the hospital.

Five months ago, I became unexpectedly pregnant. We were not trying. But then again, we never knew why we struggled to conceive. So I took it as a gift. It scared the sh*t out of me, but it was a gift. And then spotting led to an ultrasound led to an ectopic diagnosis led to a shot that didn’t work led to increasing hCG led to please take my tube out before it bursts and I bleed out internally, which ultimately led to surgery to remove my right tube.

And honestly? I’m glad it’s gone. I realized that it might have been the problem, or part of the problem at least, all along. During my initial IF workup, they couldn’t see my right tube. They chalked it up to a muscle spasm, or something along those lines, but who knows.

So that’s where I stand. Wanting, but afraid. Somewhat of a precipice, but maybe it just feels that way. From here, I’ll have to just see which way the wind blows.

Clinic days.

12 May

Thank you all so much for your kind words on my last post. I can’t tell you how many times over the past months I’ve started an update post like that only to get frustrated and depressed in the recapping of it all. Sometimes it’s just easier to talk to my husband or our care providers or my parents or anyone who knows the ins and outs of everything, instead of explaining it in detail, in writing no less. The weight of explaining everything is heavy and for so long I just couldn’t bear it.

That said, after your comments, I’m so glad I did! Now I feel like I can come here and update you much more easily on how she’s doing, now that you’ve had a primer in all things bowel rehab. This Thursday we go to clinic. Clinic is where all of her care providers – the home PN team, the surgeons and the nutritionists all come together to see how she’s doing and see whether or not any changes need to be made in her “plan,” aka PN, meds, etc. A lot of their decision is based on her weight, so every time we go we’re always holding our breath when we get taken back and she is weighed.

We stopped her last round of antibiotics on Friday and already we’re seeing signs of the overgrowth returning. It’s crazy how fast it rears its ugly little head. She’s already taking less formula, which makes us worry what her weight will be. We try to compensate with more high-calorie solids if we can but sometimes she’s not so interested in those either. We’re also a little nervous because when we were at clinic three weeks ago, her bloodwork looked a little “dry,” aka dehydrated. This is concerning because even if she’s able to maintain her weight without PN, if she can’t maintain her hydration then we may need to keep the line in for longer (who knows how long, some folks have them indefinitely) to continue giving her IV fluids to support hydration.

This is her first weight and bloodwork since we stopped PN altogether so there’s just a lot riding on this appointment on Thursday. And it’s such a long day. We first take her to the lab for bloodwork. Even though she has a central line from which you can draw blood, they always insist on an arm stick for the blood draw. So that sucks to watch. Then we’re at clinic for a good 2-3 hours while we wait to give them our update and then wait for them to go huddle and make a plan and then wait for them to come back and discuss it with us. She usually ends up missing her afternoon nap altogether which is tough for all of us. I’m so glad that DH always takes the afternoon off on clinic days to come with and help us. It’s such a huge help to have him there and talking to the surgeons, asking questions, making the plan, etc. is really a team effort.

So that’s what we’re looking at for this week. But once we get through clinic, we have an awesome weekend ahead of us! We’re celebrating Juni’s birthday on Saturday and cannot wait to come together with our family and friends to celebrate the gift she is. I’ll have more on that soon.

Maybe

26 Jul

Maybe I’m scared of diving into my own complicated web of feelings. Maybe I’m not as open to sharing as I once was. Maybe I’m just too busy, too worried, too stressed, to bother with blogging. But whatever the reason, I’m not feeling up to posting right now.

I did want to let you all know that baby J is doing well (“Turtle” no longer seems apt). Her second surgery to repair her atresias went well and her recovery is going well and we continue to watch and wait and hope as life here in the hospital, well, goes on. There is no expectation or timeline of going home in the near future. Thank you all so much for your well wishes over the past few weeks. They’ve easily been the most challenging of my life.

I’m continuing to mull over what I want to happen to this space at this point. For now, I know that blogging feels like a chore and another chore is the last thing I need right now. This isn’t your typical “I’m a mom now, what do I do with my infertility blog?” question. It’s more like a “my baby has been in the hospital since birth with a threatening birth defect and complication, how do I cope and function?” kind of question.

Until I know the answer, there may be a bit of radio silence around here.

Catch up

27 Jun

The past two weeks have been one thing after another. Just when we’re starting to settle in to a routine here at the hospital and finding our sea legs, I wake up with searing chest pain after I go to sleep on my birthday, unable to catch my breath.

We left Turtle alone with the nurses for the first time ever while security rushed me over in a wheelchair  to the Brigham ER. Six hours later, one chest X-ray, one CT scan, a heart ultrasound, an EKG, after giving blood and urine, they ruled out preeclampsia complications and an embolism. They gave me morphine for the pain, which was wonderful, until it wore off and the pain was still there. It ultimately lasted about nine hours. We got back “home” to Children’s, promptly got colds, and hoped it would never happen again. The ER attending clearly thought it was just a panic attack because he told me to just “breathe through it” if it happened again.

It did, on Father’s Day around noon. I was completely incapacitated, just lying on my bed here in the hospital, in the worst pain I could imagine. We didn’t know what to do. Another trip to the ER? We couldn’t see what they would do differently. The pain lasted about twelve hours this time. My parents suspected it was my gallbladder, so I got myself a new PCP at Beth Israel and saw a resident there the next day.

Two days later, a gallbladder ultrasound confirmed that there were stones present. I scheduled an appointment with a surgeon for nine days later and hoped I’d make it. But of course I didn’t. On Friday night I had another attack and this time I couldn’t take the pain. So at 3 am, DH put me in a wheelchair and rolled me to the BI ER. There we waited with people coughing all around us while they gave me morphine (sweet relief!) and ordered another ultrasound.

They ended up admitting me to the hospital on Saturday afternoon and long story short, I had my gallbladder removed laproscopically on Tuesday morning around 4 am (after being an “add on” to the surgery schedule all day and continually being bumped). I spent three and a half miserable nights away from my baby girl, most of the time just sitting around, starving “just in case” I needed to go into surgery, trying desperately to pump and watching my supply dwindle to next to nothing (where it remains for now). More than a few meltdowns were had. I fully acknowledged my newfound fear of dying, now that I have a baby.

But. I was discharged 11 hours after I went into surgery and taken right back to Children’s to see my girl. I missed her so much! I missed just being in this hospital room with her all day. I missed all our favorite nurses who have become our friends. As much as I’ve hated being here, I suddenly saw it in a new, more appreciative light. We may not be home, but at least we can be at the hospital all together.

Everyone keeps telling me how strong I am. I still don’t understand it. I really feel like I’m just getting by and doing what I absolutely have to do, they only things I can do.

ps. One quick point of clarification: Turtle is not in the NICU. She cleared the NICU after two days. She’s very stable and just needs to keep growing on TPN. We’re on a surgical floor for infants and toddlers. She will be back in the NICU for a few days after her next surgery, which is scheduled for four weeks from tomorrow.

On daycare

5 Feb

We’ve been on the hunt for a suitable daycare situation for over a month now. I’m pretty set right now on returning to work after Turtle is born. I’m not sure it’s even a choice. Could we maybe scrimp and save so I could stay home with Turtle full time? Maybe. But do I even want to?

While part of me would love to spend all day every day with my child, smothering him in this overwhelming love that already pulses through my veins, part of me, frankly, would not. (Though if money weren’t an issue, I probably would.) But I know what it is to be home with only kids and chores all day (granted, they were not MY kids, and I know that does matter) and I don’t care so much to do it again. I also know what it is to live on basically one income, relying completely on my husband to provide for me. I don’t care to do that again either.

Should I be feeling more guilty about this than I do? Should I be torn and crying over having to go back to work? I know I will feel differently once he’s born, and of course, depending on any complications that come up, I very well may not be returning to work when I plan to. But for now, I’m kind of okay with it.

I just happened to read this blog post from the sister of a husband of a friend of mine, who stays home with her three kids. At first I felt a flash of guilt upon reading this. She argues that no one loves and adores your kids like you do. Which is of course true, but I’d argue, so what? Why does my kid need to be worshipped and adored all day? Are any of us, once we get older and leave the house for school, college, work, etc.? As long as his needs are met and he’s engaged with in a kind, engaging and appropriate manner, he can get all the lovin’ and more that he needs when he comes home to mama and papa.

Confession: I was a daycare kid my whole life. My daycare providers at times had less patience for me than my parents, but it taught me a lot. And anyways, I didn’t need them for love. I definitely resented not having a stay-at-home mom at times, when I got sick at school and the nurse had to call a neighbor to come pick me up. Or when my parents weren’t endlessly available to go on field trips, volunteer at school, etc. But I also really respected my mom for her career and learned so much from her confidence as she went out into the world every day and brought home respect from her work world and a decent salary too. I wrote about this a few years ago on my personal blog much more eloquently.

I also recently read another much better blog post on this whole debate. On why women feel the need to belittle each other’s choices. Is it because we’re jealous of what we don’t have? The truth is, you’re going to feel guilty no matter what choice you make. But there’s as much value in choosing to stay home as there is in choosing to go to work.

As far as I can tell, no matter what decision a woman makes, she’s offering an invaluable gift to my daughters and me. So I’d like to thank all of you. Because I’m not necessarily trying to raise an executive or a mommy. I’m trying to raise a woman. And there are as many different right ways to be a woman as there are women.

I started this post thinking I was going to dive into our daycare hunt but I’ll save that for another day. For now, there’s just this: I’m choosing what works best for me and my family right now. I reserve the right to change my choice as my needs and the needs of my family evolve. And no matter what, I’m doing so with respect for all women who must walk this difficult line of to stay home or to work, every day.

A note from my Dad

24 Jan

Just got this email from my Dad and had to repost here in full, because he’s the best ever and because I want to remember it forever.

Shel,

Hope you are continuing to feel better overall.   It was so very nice to get that pic from you yesterday.   It seems about right from the time we saw you at Christmas to now.   You look great and also lovely and also beautiful.   I am grateful for all of us reaching the cusp of parenthood/grandparenthood.  It is an exciting time both for the new experiences we are encountering along the way, and for the always present jitters we feel about the unknown.   But that is the way the future is and, historically speaking, always has been…unknown until we get there.   I know there is always so much to think about, but in between making lists and plans, do take moments each day to reflect upon and take pleasure in the miracles that are occurring within you and around you.

Dad

Good advice for all those struggling with the transition from struggling to get pregnant to struggling with pregnancy after infertility (you know who you are!).

Okay, I might have to go cry now.