Almost two

My little J is turning two in a few days, and I realized perhaps that’s why I’ve been a bit more emotional and thin-skinned lately. I’ve been thinking back to two years ago, when I was in the hospital for pre-e. I feel a strange longing for those days spent being watched carefully, sleeping in the hospital bed, ordering meals to my room. Of course it was hard in many ways, but the hard bits fade. The edges blur slightly and you look back and think, it wasn’t so bad.

I even do that with J’s days in the hospital. Sometimes I miss them. Should I feel guilty for that? I don’t miss her being sick or struggling or the sheer agony of the days before and after her surgery, but I kind of miss living there sometimes, which blows my mind. We were practically kicking the door down to get out of there. Yet every time we were admitted for short inpatient stays after the big one, it felt like coming home.

Now, on the almost eve of her second birthday, I am itching to go back and remember the day. I took her birth story post down long ago because of the pictures coming up in image search engines and it all made us nervous. Still, the story is a good one. I get requests for it. So I’m bringing the text of the story back, in case you’d like to take a walk down memory lane with me. If not, skip to the bottom for an update on how she’s doing.

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Turtle’s Birth Story

This is the most surreal blog post I’ve ever written. Turtle is here, you guys. Let me start at the beginning.

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On Monday they ordered more labs to check in on the state of my pre-eclampsia, including bloodwork and another 24-hr urine collection. On Tuesday, I knew my OB would be on call and stopping by sometime in the morning. DH had been leaving the hospital room around 6:45 am to get to work but I asked him to stay this day to hear what she had to say. By 9 am he was getting antsy to get to work and finally decided to leave, even though we had asked our nurse to page Dr. Caring and let her know we were waiting to meet with her.

As he’s heading out the door, our nurse says, Dr. C on the floor and consulting with Dr. Kind’s practice. She would be by soon. So he came back and waited. And I’m so glad he did because she came in and basically said, how do you feel about delivering today? I was 36w3d at that point and my pre-eclampsia seemed to be getting a little bit worse. My blood pressure readings were creeping up and one of the liver indicators in my bloodwork had made a jump. She didn’t want to wait and then have to have an emergency c-section. With Turtle’s condition, we needed to be able to plan ahead a little bit and coordinate with Children’s. So Tuesday, May 21st it would be!

We had about six hours to get ready, which included flying DH’s mom up from the DC area and making all sorts of arrangements. I was a ball of anxiety in these hours, really anxious about everything to do with the surgery. I was trying to live in the moment as much as possible but I’m afraid most of this time is a blur. I did take notice of every one of Turtle’s movements and told myself this was one of the last times I’d ever feel him move inside of me.

Eventually they got me up to labor and delivery and started prepping me for surgery (including the super fun hunt for a place to put an IV in my tiny veins). We planned for DH to be with me during the birth, then he’d go with Turtle to the NICU for stabilization, and eventually over to Children’s. At that point, my mom would come into the OR to be with me for the rest of the surgery. This was an accommodation on the hospital’s part but oh my god, no one knew how important that ended up being.

After they got my spinal in (horrible feeling, I cried), they laid me down and I tried not to think about my naked lower half splayed open for all to see while they catheterized, sterilized, and did god-knows-what-else to me. I was so glad it was my own OB doing the surgery, someone I trusted implicitly and knew well. I kept getting nauseous and the anesthesiologist kept having to fix that. I tried to just focus on a spot on the ceiling and couldn’t help but think how much courage this was requiring and how much of an equal sacrifice a c-section is.

Finally, it was time and they allowed DH to come in and sit by my head behind the curtain. I felt lots of tugging and pulling all over but nothing hurt. I think I remember hearing that they could see the baby. Then more tugging and pulling. Then something about how the baby came out peeing. Then these words that changed my life, “Is it a girl or a boy?”

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DH and I met eyes immediately in confusion and, frankly, terror. What did they mean, is it a girl or a boy? Of course it was a boy! We had a MaterniT21 test! We saw boy bits on an ultrasound! Was there some sort of scary ambiguous gender thing going on? It seemed to take forever. The anesthesiologist kept saying, congratulations, we’re just confirming if it’s a boy or a girl. Meanwhile, DH and I are frantic, trying to wrap our heads around the fact that it could possibly be a girl.

We hear some faint cries from the other side of the room and after an eternity, a nurse in yellow scrubs comes over to say, it’s definitely a girl. WHAT! Then she asked DH if he wanted to see her and he was like, um yes! Off he went and off my mind went spinning. At some point, a NICU resident came over to tell me something about meconium, getting a tube in her stomach… I honestly couldn’t even listen, all I could think was, TURTLE IS A GIRL!

They wheeled her over for me to see but she was far away in an isolette and I could barely view her. Then she was gone, DH was gone, and they went to fetch my mom. When she came in, she was all smiles and the nurse told me she hadn’t told her anything yet. I’m sure she was babbling on about something but I just met her eyes and said, “Mom. It’s a GIRL.”

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Everyone in the OR, especially my OB, is shocked. We’re all trying to figure out how this could happen. My OB is getting her office on the phone to call Dr. Kind’s office, get ultrasound records and the MaterniT21 test results. She’s resolved to get to the bottom of this. Meanwhile, my mind is still spinning.

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Here’s what I know in recovery: she’s a girl. She’s on her way to Children’s. She looks good. She weighed 7 lbs. 11 oz., same as me, but I was late and she was way early. She scored 8 and 9 on her Apgar. She was born at 3:24 pm on May 21st, 2013. She’s a she.

Then I’m throwing up and they’re starting my 24-hour magnesium sulfate treatment to prevent seizures and the nurse is being amazing and putting ice cold washcloths on my face and I can’t really think about anything. I hear she’s in surgery around 5 and out around 7. I hear she did well. DH calls me and says the NICU nurse wants to talk with me. She tells me Turtle did so well in surgery and the surgeon is really pleased with her results. Her belly was big enough to fit all of the bowel back in and close up nicely. She has a lot of healthy bowel. BUT. There are two blockages (atresias) that will need to be fixed with a subsequent surgery in 6-8 weeks. It’s my worst nightmare and a dream come true all at the same time.

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The past few days have been intense. I’ve been so occupied by my own recovery that I haven’t been able to really miss her or fret about her. The magnesium treatment is not at all fun and essentially knocks you out for 24 hours. Still, I was determined to see her on Wednesday, so as soon as my 24 hours were up, my nurse and parents started trying to get my to a place where I could be wheeled across the street to Children’s to see her. The pain and discomfort I felt as soon as I stood up required every ounce of determination I had to make it to the bathroom. I had to, otherwise I could not have gone. They packed me in the chair, catheter and all, popped some Per.cosset and even though I felt like hell and was really only about halfway with it, I got there. I saw her. I touched her that day for the first time. All I could do was reach into her isolette and stroke her head and cheeks but I did it.

The next day, yesterday, was a little bit better and with DH’s loving help I was able to shower and see her again, and finally hold her and fall in love. By this time, everyone was on our case about the name. It was hard to say goodbye to the perfect boy name we had for a boy Turtle (we’re still not revealing it and might save it for the unknown future). It felt like saying goodbye to the son we had been bonding with and envisioning since December.

We were determined to name her ASAP though. It just felt like she NEEDED a name, we couldn’t keep calling her “baby girl.” So yesterday we pow-wowed over lunch while the grandmas watched over her at Children’s and narrowed it down to three names (first and middle, all different). I felt strongly about one, DH loved another, so we compromised and went with the third, which we both loved.

Blog world, I’m so proud to introduce you to my darling daughter. Our wild, unpredictable little girl.

I’ll likely still call her Turtle on here for now but wanted to share her name because I’m oh so proud of her.

In terms of the gastroschisis, all of her bowel was able to be placed back in her belly on her birth day. She came through the surgery like a champ and the surgeons, like I said, were so pleased with the result. However, we’re still looking at another 6 weeks or more until they can get in there to repair the blocked portions of bowel, and then possibly another 6 weeks or more after that until she can leave the hospital. It’s a long haul but I feel surprisingly okay with all of it. And just so, so lucky to have our precious little girl here with us after EVERYTHING. Infertility, IVF, vanishing twin, early bleeding, gastroschisis, breech position, pre-eclampsia, no one ever said it would be easy and it wasn’t but she is a miracle and she is here.

ps. She is 100% a girl. A strong, feisty, pulling her tubes out girl. They confirmed her uterus and ovaries in surgery just to make sure. The MaterniT21 mix up is being blamed on the vanishing twin. The ultrasound showing us “boy parts” was early, around 14 weeks, when a mix up can easily occur. After that, we couldn’t see anything due to the gastroschisis. And that, my friends, is how even the best of modern medicine and 30+ ultrasounds can miss the fact that you’re having a girl, not a boy.

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And now, she is almost two years old. She is walking, running, climbing, sliding, balancing, kicking, dancing, even doing yoga with me. And she has more words than I can count and is starting to pay attention to pronunciation. (Big Bird is now just Big Bird, “dede” no longer.) She’s stringing little phrases together. Counting, “one thumb, TWO thumbs!” (She very much loves having two thumbs.) Like most little girls, she is equal parts sass and love. But she’s friendlier than most and generally loves life. Doing things. Being outside! It’s all the best thing ever.

On the medical side, we are still challenged by her bacterial overgrowth. But she did get her g-tube out a few weeks ago! That was a victory, for sure. But it won’t feel complete until she has surgery to close the hole, which doesn’t seem to want to close on its own. It’s more of a procedure than a full surgery, but it does require general anesthesia so a part of me is already nervous about it.

Still, as the months continue to roll by, and the person she is continues to emerge, all the pain and anxiety described above gets minimized. Which is good and natural, but some days, like today, you want to hang on. And remember. And fist bump your former self and your husband and your baby and everyone because, we are the lucky ones who survived and thrived. And I won’t ever forget that.

Here and okay.

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.

Update on J

Juniper is growing bigger and stronger every day and we are so proud of what a true champ she has been through everything. The whole process of rehabilitating her bowel has been so much longer than what we originally planned for but we have tackled it all as a family and I guess that’s what matters.

Kids with bowel issues, it’s a never ending roller coaster. As you all may recall, from birth through her bowel repair surgery at 7 weeks old, J had to receive all of her nutrition intravenously. It’s called Total Parenteral Nutrition (TPN) and it’s basically IV fluids that have a lot of extra stuff that your body needs to grow and thrive. So instead of processing things through her bowels (aka eating, absorbing nutrition and pooping out the rest), she was processing everything through her liver. (Side note: some kids’ livers can’t take this for very long. The fats they use can cause the liver to fail, which is why a Children’s doc invented Omegaven which is a fish oil-based IV fat. It has been a true life saver for many though it is very expensive and you have to get special permission to be on it. Luckily, we haven’t had to do this with J.).

Since her surgery, we’ve been on this looooong journey toward weaning PN and getting her to take enough nutrition either by mouth or through her g-tube to sustain growth. In the meantime, she has been on PN and lipids overnight, every night, since we got home from the hospital. We prepare her PN in a sterile manner and hook her up to her pumps right before bed and in the morning I unhook her (all of these things involve masks, gloves, alcohol wipes, saline and heparin flushes, etc.). Her PN is delivered through a central line, which is like a permanent IV that is implanted in a major vein and comes out through the center of her chest.

Caring for a central line is hard work because there is not only the constant risk of it getting pulled out by accident but you also run the risk of coming down with an infection in the line, which could lead to blood infection, which ultimately, if not treated immediately and correctly, could be fatal. Few people in our lives understand what it’s like to live with that hanging over your head every day. It’s awful. Any time she has a fever (which luckily has only been twice, once for a UTI in November and once for RSV in February), we have to hightail it to the ER at Children’s in Boston to get blood cultures going and start her on some serious IV antibiotics until the cultures come back (which can take up to 48 hours). They start the antibiotics proactively and if your cultures are clear, then stop them (instead of waiting for a positive and then starting, which could be too late). In the meantime, you are admitted to the hospital to wait it out.

We were doing great with the PN weaning until in late December, she suddenly stopped eating well. She started refusing bottles, vomiting frequently, and having diarrhea. And worst of all, losing weight, which caused us to actually have to increase her PN (the OPPOSITE of what we wanted). For a long time, the docs didn’t know what was up. They thought she had a stomach virus and then developed a bottle aversion as a result and/or some kind of allergy. It wasn’t until we went in for the RSV and she was on heavy antibiotics for 48 hours and we came home and she suddenly was back to DOWNING bottles like it was her job (which hey, it kind of is), did we realize she has Small Intestine Bacterial Overgrowth (SIBO). It is what it sounds like, an overgrowth of bacterial in the small intestine (where there shouldn’t be much bacteria). Common for kids who’ve had bowel surgery, motility issues, and who have been on antacids for a long time (J has/had all three).

As a result we lost a lot of progress. BUT we are finally getting control of the SIBO. J takes antibiotics every other week to keep it in check. When it is in check, she eats so well and gains weight. Since starting antibiotic treatment, she has started gaining weight again. All this is the long way of being able to tell you this and have you understand the triumph: we are no longer on PN. Now, we are still giving her IV fluids every night. That’s part of the weaning process. You start replacing nights of PN with nights of IV fluids (which have way less calories). To put it all in perspective, in December we were down to 3 nights of PN/4 nights fluids. As the result of the SIBO we had to go back to full 7 nights of PN. We finally started weaning again in March and just this week went from 3 nights PN/4 fluids to ALL FLUIDS.

This is huge for us but we’re also cautious and trying not to get too excited. What it means is that if she is able to keep gaining while on only IV fluids, they will go to every other night, and then down to nothing. And if after that she is STILL gaining weight? We’ll wait about 4 weeks and then she will go back into the OR to get the blessed central line out.

I love her central line. I appreciate what is has done for us. It has literally kept her alive since she was born, delivering the nutrition to her blood stream that she could not get any other way. But I cannot WAIT to get that thing out. I was remembering this morning the first time I saw it. I was in her room at Children’s (our first room, a double – ugh), and they were doing a dressing change (this is a sterile procedure that needs to be done once/week). I stepped back to let the nurses work and caught a glimpse of that thin white line sewn to her tiny chest. It scared the crap out of me. I remember the first time a nurse let me flush it with saline. It seemed like the craziest thing! I didn’t know then that I’d be doing that every day, twice a day, and it would become second hand to me.

Most of all, I remember a dream I had many years ago, during the throws of IF. I dreamt I was holding my daughter and I was FILLED with joy. I knew she was mine (biologically) but something about her wasn’t mine. I didn’t know what at the time but the dream felt so real. It felt like seeing the future. That joy stayed with me when I woke up and I always knew I was destined to have a daughter. When our MaterniT-21 test said we were having a boy, I was shocked because I KNEW I was supposed to have a little girl. Now I know what that dream meant. I’m saying all this to put in perspective what it will mean to have her line out. Some part of her is still not mine. It belongs to the line. I want to go swimming with her, take a bath with her, go anywhere with her without worrying about germs, fly with her, travel with her. I want all of her to be mine.

We are so close now and everything is going pretty well and it’s scary. I don’t want the bubble to burst. I’m terrified of not getting over this last little hump to the promised land.

Pity

We all say we don’t want pity when life hands us a heaping pile of lemons. But do we mean it? Pity has a negative slant to it but isn’t pity, when kindly intended, just another word for sympathy?

That’s the other reason it’s been difficult to share too much of our situation with those we know and for me here on this blog. I don’t want to look like I’m trolling for pity. I don’t want to be all “woe is me,” even though sometimes? Woe really IS me.

I do want sympathy but I don’t want pity. Not because pity is a dirty thing but because I don’t want to be pitiable. It pains me to think of people saying “I’m sorry” to our faces, while thinking “thank god that’s not me” silently to themselves. I never thought I’d be one others would pity, especially not at this part of my life. Sympathy feels good but pity makes me sad. Thinking of others pitying us makes it feel like this really is as bad as all that.

And yet I want to say to some, don’t skip over my pain. Don’t minimize what I’m going through. Don’t talk to me like everything is normal because it is not. I feel this distance growing between me and my closest girlfriends because they just can’t begin to understand.

I know, I sound impossible to please. The truth is that the needs of someone in the midst of a serious and ongoing personal situation like this are ever changing. I need people to be there for me and yet I need space. I need friends and family to walk that fine line between pity and sympathy. I need to be handled with care without feeling like I’m being handled with care.

You’d think the people here in the hospital would be the best at walking those lines but some of the comments we’ve had from people you wouldn’t believe. Last week I had J in the Baby Bjorn and was walking her around the floor while also wheeling along her IV pole when someone with a staff badge passed me, looked at our pole and said, “that’s a lot of baggage!”

How do you respond to something like that? A cutesy, “We don’t travel light!” with a laugh. Or a more pointed “thanks for the reminder!” Because I had almost for a second began to get used to OUR normal before you reminded me how fucked up it really is.

Or there was a doctor, the head of surgery no less, who suggested on rounds that maybe I don’t hold her enough as the reason she had been vomiting two nights in a row. That slayed me. I make every effort to hold her as much as possible, just usually not at the time rounds come by.

Other docs are amazing though. One surgeon, a male no less, had the awareness to acknowledge how good it is that I managed to have some breastmilk for her (about a month’s supply, for what it’s worth), since that’s the easiest thing for her newly working bowel to digest. I’ve thought about a whole post on the challenges of exclusively pumping while living in the hospital but how many different ways are there to explain how much it sucks to exclusively pump while living in the hospital (and having gallbladder attacks and your gallbladder removed). I did my best but in the past weeks despite my efforts, my supply has gone down and down. I’m now dry, and sad for it because I so wanted to experience breastfeeding J. We had a few times where we practiced with latching and it was wonderful.

Oh well. Next baby. (Now that really is a whole other post.)

It’s happening

Well I was planning to blog today about something else but things have changed. Our surgeon came in this morning at 7:30 and woke me up to tell me that he’s decided to move Turtle’s surgery up to NEXT THURSDAY. It was supposed to be July 26th but he feels she’s growing and doing so well that those two extra weeks of waiting won’t be necessary.

As I said on Facebook, I am simultaneously excited and freaking out. I have been looking forward to this surgery with a strong mixture of hopeful anticipation and utter dread. My husband, the pragmatist, doesn’t get it. Is it a mama thing or what? My heart is just wailing, they’re gonna cut my baby open.

He says, but it’s necessary, they have to, she’s broken. I know this, logically, of course. She literally cannot live like this forever. Her bowels are broken. She cannot process food and absorb nutrition. You can only be on parenteral nutrition for so long before your liver is damaged.

I know this. But I just think of them wheeling her alone into surgery, without me. Of them messing with her consciousness and putting her to sleep. Of her tiny, precious body lying vulnerable on the table. Of the scalpel cutting across her entire belly.

Will she feel alone? Before they put her under, will they comfort her, talk sweetly to her? And how will I cope during those four to eight hours? I can’t even imagine what I will do with myself. Sit catatonic in the massive surgical waiting room here? Pace manically? What will she look like when she comes out of surgery? Will she be sedated? Will they take all her pain away? Will she be scared when she finally wakes up? Will she be swollen?

These are the real mama questions I want to ask but with the surgeons we have to ask the logical questions, not the emotional ones.

I know they’re experts, the best in the world. I know she’s a champ. These platitudes only help a little. What helps is thinking of this as a necessary step, a big leap forward, toward going home. Toward our real life. THIS is all not real. We don’t live in a hospital. I don’t have a nurse call button or an endless supply of supplies or people coming in to take vitals or an IV pump or a fold out chair for a bed in real life.

Very soon I won’t have a baby with an NG tube and a central line and all these things coming out of her that we need to be extra careful about. Soon she’ll only wear mittens so she doesn’t scratch herself, not so she doesn’t yank her tube out of her nose, or worse the central line or G-Tube that are stitched to her. Soon I’ll be able to pick her up and WALK AROUND. Without a nurse disconnecting her from things. I’ll just scoop her up and hold her any way I want.

We have a beautiful, real life waiting for us out there and the wait just got a little bit shorter. That’s the only thing that helps me cope with the fear. I wonder if it’s somehow connected to our infertility and loss as well. The feeling that I could still lose her. That this is so good it could possibly just be a dream. I know I won’t lose her. I know she’s here forever now. But that extra layer of irrational fear haunts me. IF’s parting gift perhaps.

So she’ll be in surgery next Thursday. Please mark your calendars and think good thoughts for our girl that day, all day long. After surgery she’ll likely go back to the NICU for a few days for the early part of the recovery. This is better because she’ll be under the close watch of the most experienced of nurses, but it means we’ll give up our private room on this floor. This room has really become home and I will miss it. When we get back to this floor, who knows where we’ll go. Hopefully we’ll still be able to arrange to both sleep here. When she’s in the NICU, we can’t sleep there. We can be there, anytime we want, but there’s no way to sleep there. They have rooms somewhere in the hospital for NICU parents but they go quick and they often run out of availability.

Eventually though we’ll come back to this floor and the real work of beginning feeds will start. She may have to have an ostomy and a third surgery, depending on what they see when they get in there. Our hope is that they will be able to repair the blockages and reconnect her bowels next Thursday. If they can’t, this ostomy plan will go into place and will likely delay our homecoming by about two months. If that happens, I very well may have to quit my job, as I can’t in any way fathom going back to work while she’s still in here. And frankly, even after she gets out, I want some time with her at home. I feel I deserve it. I feel cheated out of my maternity leave. Maybe that’s wrong to feel, but I do. Which of these scenarios we’re looking at will be a lot clearer after she gets out of surgery.

After she gets out of surgery next Thursday. Next Thursday. Holy shit. My baby.

If I don’t blog before next week, please keep us in your thoughts and I’ll try to come back as soon as possible with an update on her condition, even if it’s just a few lines.

Day in the life

Note: I wrote this a while ago but never finished it. A few things have changed but I still felt it worth posting.

I have spent the past eight (now eighteen) days living full time at Turtle’s hospital bedside, in a space of maybe 50 square feet. I leave for maybe an hour each day (excluding Saturdays when we’ll try to get a few hours at home with the pets), but only if there’s a family member to be with her while I’m gone. And even then, it’s hard.

The hospital has already become my home and I’m settling into as much of a routine as you can in a place with zero privacy and constant interruptions. In the morning, DH leaves for work early and I usually wake up with him. I have to get dressed, pump, and eat (not always in that order), and be presentable in time for the surgical rounds, which usually take place between 8 and 9. The rest of the morning is spent tending to Turtle, talking to nurses, pumping again, and sometimes straightening my hair.

I try to hold her for at least an hour before lunch and love to fall asleep with her in my arms. Often that is the only time I get to hold her in the day because it’s such a production, between the NG tube connected to suction in the wall and the IV lines to get her out of her crib and comfortable in my arms. How I long for a baby without a million things attached to her! That I can just pick up and squeeze and snuggle without worrying about tugging at tubes and lines.

I’m allowed two free meals a day since I’m pumping so after my free lunch, the afternoon goes by quickly in a blur of again, tending to her (calming her, swaddling her, changing her), interacting with the nurses as they come in to take vitals every few hours, and sometimes getting some reading done or making some calls. And of course, pumping. In the late afternoon my parents arrive with clean laundry, dinner, and anything else I’ve asked them to bring from The Outside. Our small space gets even smaller when they’re here but I truly couldn’t do this without them.

DH comes back around 5 and then we all hang out for a bit. Sometimes we go eat early while my parents stay with her. There is a lovely garden here (that they are sadly trying to tear down!) that we go to as a respite from the clinical setting and to eat dinner. After my parents leave and we’ve eaten, we spend the evening hours admiring Turtle, caring for her, talking with each other, greeting the night nurse, and sometimes watching something on Netflix. Oh, and pumping. Always the pumping.

We don’t have a set bedtime, just depends on how tired we are and what’s going on with her. Turtle does a great job with sleeping through the night (remember, she doesn’t eat), really only fussing when her diaper is wet. We’ve only had a couple instances of nighttime fussiness that’ve been hard to control. I try to get up with her as much as possible to give DH a chance to rest before work but sometimes he can’t help but wake up too. It’s nice knowing too that nurses are coming in and out to check on her and they help keep her diapers changed, swaddles tight and binkies in as well.

The next day, it all starts again.

We’re quickly learning the ways and politics of the floor. Your nurse is your lifeline and it’s important to get her in your corner. We’ve had some amazing nurses that have taken pity on us and pulled some strings for us. One of our night nurses arranged for us to get two sleeper chairs by Turtle’s bedside, even though you’re technically only allowed one and only one parents is supposed to stay the night. She understood how much we both desperately wanted to be with our newborn and together and her rationale was, what’s best for mom and dad is best for the baby. Ever since that night, no one has said anything about our both sleeping here. We’re lucky too to have the window spot in the room, which has way more space than the door spot (yes, they’re double rooms for families with recovering babies – not easy). Last night’s nurse helped us narrowly avoid getting a new roommate, so we’re forever indebted to her too.

(We have since been moved to a private room after having three different roommates over four days including a pair of particularly disrespectful parents with a screaming baby that kind of made us lose our shit. The private room is completely amazing but we have no guarantee of staying in it as it is reserved for patients with infections. For now, the nurses understand that we’re here so much longer than most everyone else and have promised to try to keep us in this space.)

We’ve also learned how important it is to take an active role in Turtle’s care, and that we can effect some of the decisions made. We are the only constant between all the different nurses coming on and off their shifts, and only we know what has been told to us by surgeons that doesn’t always get communicated back to the nurses. DH kind of showed me the ropes with this by paying amazing attention to detail and asking a ton of questions right off the bat. Now that he’s back at work he fully expects me to be his eyes and ears around here and stay on top of everything, which was a little tough at first, especially when I was still focused on my own recovery, but I learned quickly and now I’m pretty fastidious about all the details and keep my own detailed notes.

It’s hard to really put into words all the emotions I’m feeling, which is why I haven’t blogged much because it’s overwhelming to parse it all out (and beyond that I feel like I have so little time). There are so many moments of joy and pride in my daughter, in watching my husband be a father. I feel unbelievably lucky a lot of the time. But I also feel a deep sadness in having to be here, especially for as long as we do (if we get home by October, that would be amazing). I feel stressed, knowing she probably won’t get out of here before my maternity leave is over and what the hell am I going to do about that? I don’t feel at this moment that I can return to work with my baby in the hospital. I don’t think it’s right that I should have to but financially? I’m not sure how we will make it work and besides, she’s on my insurance because it’s more comprehensive and this little hospital jaunt is probably costing many several hundred thousand dollars.

My mama bear instincts are in full gear and I am filled with anxiety when certain people touch my child, especially student nurses, people in training, people I don’t know, and even some people I do. DH felt this feeling much earlier than I did and I couldn’t quite understand it but now I do. I miss my dog, my bed, my kitchen, my having doors that lock. I dream of taking Turtle for a walk in our neighborhood with the dog, having skin to skin time without a central line and a gastronomy tube between us, breastfeeding her, bathing her. I long so much for these “normal” things.

And then I beat myself up because I’m so damn lucky to have her at all and because she’s doing so well and is so very loved and special. I have days where I can’t stop crying and a depression takes hold. I’m irritable and I just want to be left alone with my baby. Thankfully these days are not every day.

So that’s where I’m at. Full time with my baby, sleeping and pumping when I can, loving her more every day, and dreaming of the day she finally comes home for good.

Week by week

Week by week. That’s how we’re taking things at this point, according to Dr. Kind this morning.

At our weekly ultrasound, the dilations have continued to grow (many are over 3 cm now) and alarmingly, to me at least, my amniotic fluid has shot up. We had been hearing the fluid level was normal for weeks now and had been taking that as a good sign. Today it was 27, definitely out of the normal range.

What does this mean? Well it seems his bowel is getting sicker, perhaps ceasing to function as well. There could also be a blockage developing, which would prevent the fluid from going through his system, thus increasing the amount.

It means Dr. Cohen wants to talk to Dr. S, our surgeon at Children’s. It means that 37, possibly even 36 weeks, could be out the window. It means they’re really starting to weigh what will be more beneficial for the baby: more time in the womb vs. getting the healing process started. It means that at any one of these weekly appointments, they could decide to pull the plug.

Turtle is still in a breech position right now, which is making the possibility of a c-section all the more real each day. After the appointment, DH and I decided that it’s definitely time to pack the hospital bags, and I’ll probably want to start working on a c-section birth plan as soon as possible.

At this point, I honestly don’t know what to feel. We’ve had to be so flexible in terms of when and how this baby will come out that this really just feels like a little bend in an ever shortening road. What feels easiest is to take myself out of the equation altogether and figure, whatever the doctors think is best, is what I’m on board with.

Do I want to deliver before 36 weeks? In my ideal world, no. I want him to stay in as long as he needs, I want him to emerge as big and strong as possible. But this clearly isn’t my ideal world in any fashion, and if taking him out earlier is what’s best for him, let’s go for that. Do I want a c-section? Ideally no, but if it’s best for him, I’m all for it.

All I want is a healthy baby. And as things start to get more serious with his condition, everything else just feels like noise and clutter next to that goal. So for now we continue to wait and watch, we continue to take everything as it comes, we continue to cling fiercely to the hope that everything will be okay in the end.

Processing

I’m still trying to process the results of our appointments on Monday, hence the delay in my posting.

The good news is, Turtle is still growing right on track (even a little ahead). His dilations have not grown very much. His bowel is still moving, still appears to be alive. My amniotic fluid level is still good. He seems to be getting enough oxygen and he passed the non-stress test with flying colors. And my blood pressure is great. That’s the good stuff.

The less good is that he’s still in a breech position and we learned that with his condition, he cannot be delivered vaginally if he’s breech, nor should we attempt a version. We also learned, after a couple weeks of getting ourselves a little psyched up at the prospect of a natural birth, that Dr. Kind will want him to come out when we hit full term (37 weeks). His reasoning is, he’s full term, he’s big enough, let’s get him out and deal with the gastroschisis.

We were a bit surprised to hear this, as all along he had been saying that he wanted to get to “at least 36 weeks if not much more.” I’m not sure what changed, since he even said something along those lines at our last appointment two weeks prior. It could be the fact that he still has these bigger dilations that aren’t going down.

Either way, that means a scheduled cesarean if he remains breech, or a scheduled induction if he turns. Now lately I’ve been feeling very much like I don’t want a c-section at all. Like the very thought scared me, of lying on that table, belly sliced open, and not getting all the hormonal and emotional benefits of a natural birth. It seemed like it would make the journey that much harder, emotionally, when he is taken away.

However, I’m not thrilled at the idea of an induction either, as I’ve been reading so much about how the contractions are more painful, how you’re tied to your IV, how sometimes it fails, how it leads to more interventions and can end up leading to a c-section anyways. I don’t know why I was thinking I might be able to go into labor on my own but it’s pretty clear that unless my body magically kicks into labor fairly early, that won’t be the case.

At first this felt very devastating. Dr. Caring, while understanding that this is not the birth we wanted, went ahead and reserved OR space for us on May 28th (37w3d), which felt very scary and real indeed (that’s less than five weeks away!). The more I’ve thought about it though, the less sure I feel about anything.

I’m thinking maybe it is a good idea to take him out at that time, maybe he’s safer here in the outside world than risking fetal death (this is a fear of mine, though not directly related to anything in particular, other than once hearing that the risk of this is slightly increased – very slightly – with gastroschisis). I’m thinking maybe a scheduled c-section isn’t that bad. It definitely appeals to the planner in me. And I’ve heard that going in for a scheduled c-section can mean a better recovery, vs. being induced then ending up with a c-section anyways due to stress on the baby, not dilating quickly enough, etc. I’ve heard too that a c-section recovery isn’t necessarily that bad.

So now I’m really confused. I don’t know what to hope for anymore. I know whatever the experience ends up being is secondary to whatever is best for Turtle. I’m trying to focus on that. But do I want him to turn and then open up the possibility of an induction, which scares me? (Scared of the painful contractions, scared of maybe having to get an epidural, scared of being hooked up to all the machines, scared of ending up in the operating room anyways after all.) Or do I want him to stay breech and go with the scheduled c-section, which also scares me?

Do we stick with our doula, if it’s looking like we’ll be having a scheduled c-section? Knowing she will NOT be able to accompany me into the operating room? Is it worth the cost of her full fee if she’s not providing actual labor support or should we come up with some hybrid fee for prenatal (and perhaps postnatal as well) counseling? We are meeting with her this weekend to discuss these things.

So yeah, I’m confused. And I hate not knowing what’s coming. But in some ways it is nice to know that sometime during the last week of May is most likely when Turtle will be here. And then the healing can begin.

ps. New updates on the Turtle page, including (giant) belly shot from today!

A day.

So yesterday was a day. Extremely long, exhausting, informative, terrifying, mystifying and at times even relaxing, sweet and exciting.

We started at our high-risk OB’s office for another routine ultrasound. In this ultrasound, we learned that Turtle has turned from transverse to breech. I am really hoping he will continue the cycle and get (and stay) head down soon. Overall, his size and weight looked good. The weight estimate was 4 lbs. 3 oz. but this is likely skewed by the fact that his belly is measuring 2-4 weeks ahead due to the dilated portions of his bowel. His abdomen is currently in the 97% percentile.

My amniotic fluid looked good, 11.1 cm pockets of fluid (normal = 5-20). This is important because high amniotic fluid can indicate a blockage in Turtle’s bowel. The dilations are still around 2.5 cm. Up slightly but still in the same neighborhood. Overall though, Dr. Kind was pleased with Turtle’s overall growth and size for this stage and by the fact that the dilations seemed to have stabilized for now.

Next up was my delivery OB. These appointments seem a little bit pointless as all they do is record my weight and listen to the heartbeat (which we always have just seen on ultrasound downstairs). If I have a question, I ask her but otherwise they are incredibly short meetings. Still, I really like my delivery OB (I am HOPING she is the one who delivers us) and enjoy these meetings with her.

Then we had a short break before our 1 pm ultrasound at Children’s, so we hunted down a grilled cheese food truck we’ve been dying to try. We ate like little piggies and enjoyed the first really nice day in Boston so far this spring.

At Children’s, the ultrasound was about the same news. In this one, they got an amniotic fluid measurement of 15.6, which they said it changes depending on how the baby is positioned. Turtle’s femur and humerus bones are both measuring ahead (the humerus is quite a few weeks ahead at 33w1d) which we liked to see. In this ultrasound we got to watch the loops of bowel as they moved around inside his belly. We were told his movement is a good sign of activity (and not dead bowel) which is great. They showed the blood flow activity in color on the portion of the bowel outside his belly and there appeared to be blood flow there as well, which is again, good news. We want healthy bowel to put back in and get working ASAP!

Next up, meeting with our surgeon (well the one assigned to our case, he won’t necessarily be Turtle’s actual surgeon). We really like this guy. He is calm, confident, very smart and such a good listener. He said this issue of having some dilated loops of bowel is common with gastroschisis. The amniotic fluid level indicates that there’s not a complete blockage (though there still could be some level of blockage). He reminded us once again of our worse case scenario: a blockage that cannot be repaired because the bowel is too inflamed. In this case, they put the broken bowel back inside, close him up, wait MONTHS until it has healed, then take it out, repair the blockagae, close him up again and THEN begin the process of getting his bowel working and accepting and processing food again. Oh how I hope this isn’t the case for us.

Still, Turtle’s bowel is not the most dilated they’ve seen. At this point, there’s nothing that can be done but to watch and wait and see how it looks when he is born. The surgeons from Children’s will come over to Beth Israel and be present at the delivery and they will determine, bedside, whether it will be possible to repair and close immediately or whether a silo will need to be placed. They often do the surgery within 4-6 hours of birth as this is the best time to work with the bowel and assess it.

Something we learned: if they close him in the first 24 hours, we’re only looking at about a week in the NICU. If they place a silo, it’s more like 2 weeks or more. We were under the impression that we were looking at 7-10 days either way. More NICU time does not excite me one bit.

Which brings me to the next line item of the day, a tour of the NICU at Children’s and the regular floor. Well, I’m skipping the meeting with the lactation consultant, which actually was very interesting but likely something for another day. Nothing can prepare you to be in a NICU if you’ve never been in one, especially not the one at the top children’s hospital in the country. It’s like a spaceship in there, more medical machinery than you can imagine, and nestled in these giant spaceship apparatuses, the tiniest little babies. They seemed so alone in there. My first reaction when I walked in was, holy shit I’m going to lose it.

But I didn’t want to cry. Not when this was a place where people were trying so hard to bring some good and healing to these precious lives. It’s not supposed to be a sad place. It’s a magical place. It’s a place where the marvels of modern medicine work their hardest to heal the tiniest lives. It was HARD to imagine my son spending time in that place. Hard to imagine myself there day in, day out. It’s very cramped with machinery and hardly a comfortable place to sit and be with your baby. But, it is where he will be and I will get used to it.

When he’s in the NICU, we are allowed to stay in a dormitory-style room within the hospital. Once he is released from the NICU though, he will go to the regular floor, where rooms are shared and there’s only one reclining chair for one parent to stay overnight. We are still trying to figure out how we will work this, with DH being back at work and us not wanting to spend every night for two months sleeping apart. We’re hoping to work out a rotation schedule with my parents who will be here to help us out. If possible, we’d like him to never be alone. The regular floor is much busier, with fewer nurses per patient. You have to stay on top of the staff to get what you need done. And he will hardly be able to advocate for himself.

No, SOMEONE must be there. It’s going to be rough though and I worry about how much DH and I will miss each other and how we will be able to support each other through this tough time if we’re spending so much of it apart. Anyone with any experience in this arena, please reach out and let me know what some viable options might be for us.

After that, we had a few hours to kill, so we went and walked around our old neighborhood in Brookline, got coffee, sat in a courtyard and talked about how surreal this all still is on some level and how that’s probably protecting us in some ways. We had dinner at one of our favorite old places. Then it was back to hospital land for our 7:30 pm tour at BIDMC.

I have to say, I thought this would be my favorite part of the day, the “normal” part, but I actually hated it. Aside from being EXHAUSTED by this point, with horrifically swollen feet and feeling the urge to pee constantly, I didn’t like being grouped in with all the people who were getting their normal birthing experience. It was especially painful to hear about how mother and baby are never separated, except for maybe an hour or two. Knowing I will be in a different building, away from my baby for days. Hearing about what you do when you get discharged and are taking baby home, knowing we won’t be discharge from this hospital to go home two days after he’s born like most people. I’ve really started to come to terms with our lot in this pregnancy, but it didn’t help to have it laid out so plainly before us just how different of an experience we’ll be having. Plus it was like 20 pregnant ladies together in one place – not something an infertile is used to.

Anyways, I got home, showered and fell promptly to sleep. I’m still tired today! But glad it’s over, glad it wasn’t so bad, glad we learned more, and glad especially that the end is in sight. Whatever will be will be, I just want him to get here!

ps. If you made it to the bottom of this post, I applaud you. I know it was a long one but I had to get it all down. Might be too “in the weeds” for a lot of you readers and I apologize if that’s the case!

Back to reality

I think we’ve been living in a fantasy world these past two weeks since our last ultrasound (which was overwhelmingly positive, perhaps our best ever this pregnancy). For the past two weeks, it’s felt like everything will be okay and we can breathe a little and enjoy the pregnancy and forget, at least a bit, about the trials that await us.

Today’s ultrasound was splash of cold water in the face.

I don’t have any growth to share, because they didn’t check it. They were solely focused on looking at the bowel today. And things have taken a turn. At our last ultrasound, the dilations had not grown. After weeks of growth, they were holding steady around 1.5 cm, comfortably below the 2 cm threshold we were told was the point at which we would start to worry about them. We fervently hoped that this meant any constriction of his bowel had leveled out and no further damage was being caused.

Today, they were bigger, and one, or perhaps a few (not exactly clear on this), is over 2 cm. Dr. Kind said he saw one at 2.4 cm. This was what we had been dreading and I didn’t know what would happen.

Here’s what happened: he called Children’s Hospital. He wanted to talk to “our” surgeon (the one assigned to our case) about, I’m guessing, what to do in this situation. This pretty much scared the living daylights out of me when he went to make that call. He came back from connecting with the surgeon and said the surgeon said to “do nothing.” He said this happens and you just have to watch and see what happens, essentially.

Which – we knew. We knew there was nothing they could do now. Dr. Kind made it pretty clear that if they delivered him now, he’d die. Vast prematurity plus gastroschisis, he just couldn’t live, he said. In fact, the earliest they’d want to deliver me would be 36 weeks. This gave me the feeling that if I don’t make it to 36 weeks, Turtle doesn’t have a very good shot at life. 36 weeks! Forget viability, 28, 32. 36! That’s seven weeks from Saturday.

Saturday, my shower. I kind of collapsed into a mess of tears leaving the office, thinking about all the plans we’ve made. How I’m scheduled to get my hair and make up done, how we’re unveiling the nearly complete nursery. All these things for a potentially very sick baby. It hurt so much. It still does.

DH and I went outside and I cried into his shoulder and he was strong for me. And then we went and sat in my car while I continued crying and we just coped with what we had learned. Or not learned, as it was. We still don’t understand the point of going through this dilation monitoring roller coaster if there’s nothing that can be done at this point. He’s either going to make it to be at a viable point for delivery or he’s not. And if he does, he’s either going to survive all of the surgeries and we’ll get to take him home, or we won’t.

This is the risky tightrope we must walk in order to have a chance at building our family. And I hate that part of me that shouts, but it’s not fair! Because I know life is not fair. Shitty, horrible, unfair things happen every single day and as far as lots in life go, I still think mine is pretty good.

We sat there in the car and began to get mad at ourselves for living in this fantasy world these past two weeks. For hoping, basically. For letting our guards down. We should always have a defense up, we agreed. But then no, we said. Why shouldn’t we hope? Why shouldn’t we have faith? We’re still figuring this out.

But in the midst of that discussion I realized that we need to go full force ahead. I’m going to celebrate this baby on Saturday with a smile on my face and my head held high. Because even if this story doesn’t end with a relatively healthy living baby of ours, I want to know that we loved and cherished everything along the way. That we believed in him and we celebrated him. I think I would regret not doing this much more than I would regret doing it.

Just need to make sure I get a few more tears out before Saturday comes. Wring myself and hang me out to dry. I’m determined to make it as happy as possible.