Off the ride, at least.

I don’t even know where to begin. Perhaps I’ll start at the end, which is today. Today is the end of a seven-week pregnancy. Today is the end of my only natural pregnancy where a heartbeat was seen. In a few hours I will take misoprostol in the hopes of passing this pregnancy on my own, without a surgical procedure.

I am prepared. Preparing for it makes me feel calmer. Here’s the plan I’ve devised: I’ll have a light, nutritious lunch at 12:30. Chicken, kale and lentils. With lunch, I will take my last prenatal vitamin. At 2, I will take a full dose of Tylenol. At 3, I will insert the four tablets close to my cervix, put an overnight pad on and take to my bed. I will watch a movie and wait for the pain.

It could take a while, or it might not be long at all. Under my bottom, will be a waterproof pad from the hospital. Next to the bed will be a heating pad, a full water bottle, Tylenol #3 (the heavy stuff, should I need it), and waiting for me in the fridge is juice and coconut water to drink once the heavy bleeding kicks in, to keep my blood sugar up and keep me hydrated. I hope the worst will pass before I’m ready to sleep. DH will sent a few alarms to wake up and check on me in the night, if I’m not up frequently anyways. I will try to collect any remnants if possible for testing. This may be difficult to identify. It is okay if I’m not able to collect anything.

That is the plan. It’s a good plan. I take comfort in the plan.

~~~~~~~~~~~~~~~~~

Here is the beginning. Let me get this down. For my own record, if nothing else. Ready to take a roller coaster ride?

On June 26th, at 12 dpo, I took a HPT. I had a hunch. We are semi-passively trying naturally for a second baby for an undetermined period of time. Probably a long time. Possibly forever.

It was beautifully positive. Beta that day was 58. Two days later at 4 weeks exactly, it was up to 181. Beautiful. Encouraging. Progesterone was 24.4. Is this real life? For the next four days I will marvel at how I’m not spotting. I always spot when I’m pregnant.

4 weeks 4 days (18dpo), a small gush of bright red blood. Cue crying. Cue “of course.” Cue blood test. Beta: 1,987. What? Begin spotting regularly now, mostly brown blood.

5 weeks, 1 day. Gush of blood with a thumb-sized clot.

5 weeks, 2 days. Ultrasound. Weird, emptyish sac barely seen in uterus. Concern of second ectopic in last remaining tube. Beta, 19,382. Breathe?

5 weeks, 3 days. Repeat ultrasound with radiologist. Normal sac seen in uterus, with yolk sac, with embryo. WITH HEARTBEAT. HB = 104 bpm. Cue relief. Enter real hope.

5 weeks, 5 days. Another bleed. More small clots.

6 weeks, 1 day. MAJOR bleed. Golf ball clots.

6 weeks, 2 days. Repeat ultrasound with radiologist. Heartbeat seen immediately. Up to 120 bpm. Embryo growing appropriately. Bleeding in uterus also seen. More relief, more hope.

6 weeks, 2 days eve. Small bleed with clot. Keeping the faith.

7 weeks, 1 day. Another large bleed with palm-sized clots. Faith wavers.

7 weeks, 3 days. Repeat ultrasound. No heartbeat found. Embryo appears to have stopped growing 3 or 4 days prior. Fifth loss, third miscarriage. Blighted ovum, chemical, vanishing twin, ectopic, now this.

~~~~~~~~~~~~~~~~~

Why am I writing this? I don’t know, I just need to. It’s not for sympathy. I have plenty and while the acknowledgement is nice, what I know is that this is what trying to make a baby means for us. It means the roller coaster. It means the very real possibility of loss every single time. I really have accepted it.

But, I’ve never lost a pregnancy where a heartbeat was seen. So that does feel like new emotional territory. I’ve never taken misoprostol. So that will be new too. My cynical side has so much sarcasm to spew but I’m keeping it at bay. It’s a ruse, anyways.

The only way out of all this, for us, is to decide we are done building our family, and we’re not ready to do that. So, on we go.

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.

—————–

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?”

**************

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.”

**************

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.

**************

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.

**************

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.

—————–

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.

The precipice.

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.

A birthday moment.

It hit me as we were singing “happy birthday” to her that holy crap, this baby is one whole year old. I felt myself tear up but then it was time for cake cutting and passing plates and no time to be weepy. Thank goodness for bright sunshine and sunglasses.

The real breakdown moment came on her actual birthday. A quiet day just spent hanging out at home as usual, other than lunch with Daddy on his lunch break and cake after dinner. I went upstairs to get her up and that day, because of a mix up with Children’s and our infusion company (blah blah boring story), anyways, that day she was already disconnected from her pumps (which is usually something I do when I go up to get her but DH had done with the early morning bottle).

So for once, I got to just scoop her right out of the crib and into my arms and say “happy birthday, sweet baby,” and boom, breakdown. Because this baby I almost didn’t get, that almost didn’t stick, that had a complicated gestation and birth and 101 days in the hospital and still with the medical interventions and tubes in her body and SHE’S ONE. Holy crap.

We did it. We made it. It’s not over but it’s HUGE. I was just overcome in that moment with all the feelings. Pride, in her, in us. Joy. Relief. So much relief. So I held her close and really wept into her shoulder for a good five minutes. And then she smiled at me and we went on with her birthday.

I’m sharing more photos and stories from her birthday party today on my other blog but just wanted to share that with you all. I knew you’d understand.

And, one.

Five hundred twenty five thousand six hundred minutes.
Five hundred twenty five thousand six hundred moments so dear.
Five hundred twenty five thousand six hundred minutes.
How do you measure, measure a year?

My baby is one today. A year ago, I was sitting in my room at the hospital, reeling from my OB’s news that she was planning to deliver our baby boy that day, because my preeclampsia was escalating and they needed time to plan the transfer to Children’s. He would be going almost immediately into surgery, we knew that much.

In daylights, in sunsets,
In midnights, in cups of coffee,
In inches, in miles, in laughter, in strife.

But as we know, it didn’t turn out quite as we planned. He was a she. A gorgeous, happy, resilient, amazing little she. The she I had dreamed of. A year ago, at this very moment, I didn’t know what was in store for me. Hours upon days upon weeks to spend waiting in the hospital. Learning a new language, a new family, a new life.

I look back with nostalgia for that time just before we became a family of three, and sadness for what the me of a year ago had in store in the months ahead. The angst and tears and Everest of worry I know she will go through, and endless runs to Starbucks. And walks in the garden. And laps around the floor, Juniper in her Baby Bjorn, and me wheeling her pumps alongside us.

How about love?
Measure in love.

How do I measure the past year? Not in the giant pile of batteries that have powered her pumps, powered her, in fact. Not in syringes, dressing changes, IV bags, sterile gloves, doctor’s appointments, x-rays, surgeries, meds, none of that. All that is part of our story and our reality still, and I appreciate it all, but it’s not what matters.

I measure the year in how much she has grown and blossomed. How she has thrived. How she has overcome. And I measure it in how much I’ve grown and thrived and overcome, and my husband too. I measure it in how much love and closeness we have. The utter joy we feel when we’re all together. The rightness and the destiny of it.

Needless to say, it’s been a hell of year. The absolute most trying of my life. And the absolute BEST.

Here’s to ONE. And two, and three, and four, and five, and the lifetime.

Here’s to her. I love her beyond measure or comprehension.

Clinic days.

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.

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.

Ruling my roost

Ladies and (well honestly) more ladies, I have been inspired. I’m on a mission to become master of my domain. Ruler of my roost. Basically, the time has come to get all clean and organized up in here.

My house isn’t terrible, like not Hoarders terrible, but it’s kind of all the time cluttery. And when I take the time to clean, it’s usually just trying to keep up with dishes, bottles, and laundry (which I do on a daily basis). I don’t exactly, okay this is embarrassing, but I don’t exactly clean clean. I just recently started making myself vacuum J’s room and sweep in the kitchen and eating area. But like, washing toilet bowls, scrubbing sinks and tubs, mopping (haha), dusting, these aren’t activities I can honestly say I engage in on any remotely sort of regular basis.

I like to say I didn’t get the cleaning gene. Because I can cook up a storm and bake you under the table. My mom is the opposite. She absolutely loathes cooking of any kind but is OCD about cleanliness in her home. I wish I could have both. I wish keeping organized and clean came naturally to me because I truly do enjoy a clean and tidy space.

If I was working, honestly, I’d pay someone to do it. Since we’ve been home from the hospital, my mom has come over a few times to do it. But I’m realizing that it’s a skill that can be learned and worked at. Cooking well didn’t always come naturally to me either. When we first got out of college I was mostly eating things that came out of jars or boxes (just add chicken!). If I asked the me of back then to whip up a lemony zucchini and ricotta lasagna (a recent dinner) or swirl together some chia seed pudding (new fav breakfast of DH’s), I would’ve been quite puzzled indeed.

I’ve been inspired first of all by just spring cleaning in general, and by the fact that Juni will soon be mobile which scares the crap out of me because eww our floors, and by the fact that I know a large part of my day to day unhappiness is caused by stress over how cluttered things are, and by Belle‘s recent series on cleaning. She’s my new hero. Please keep teaching us, teacher! (Also: I want this book!)

And honestly, I’m home all day and it’s kind of embarrassing. Belle talked about the sense of accomplishment in having a cleaning routine and I so admire that.  But one of my biggest problems is, you can’t clean while there’s clutter, but you can’t clear the clutter if there’s no organized place to put it. Most of our closets are overrun with stuff we don’t ever use. That needs to change. If everything has a place, I can put it there, and then I can come up with a cleaning routine that works for us and is (hopefully) manageable.

This is all part of me finally accepting that, for now at least, I’m a homemaker. So I should try to be a better one. I’m used to excelling in my career. And even though housework never ends, hey, neither does office work. Projects lead to more projects. There’s still plenty for me to take pride in around the house. I actually started this post a few weeks ago and have done A LOT since then. I’ll be back soon to update you all on my progress. I’m starting with organizing and then will get a good cleaning routine down.

Wish me luck on my journey!

IVF? WTF.

I’ve been away a long time, I know. I still don’t know exactly what to do with this space or my other blog. I’m just not in a super share-y place these days (years?), at least not where baby J is concerned.

(That said, I made some real connections with some of you out there and seeing as I’m so infrequently here, I’d like to ask those of you who still read this, who feel connected with me still and feel so inclined, to please email me so we can keep in touch, or find me on FB if we’ve emailed in the past and you have my full name. Not on a blog is where I (not terribly often, I’ll admit, but sometimes) share updates on how she’s doing. But I will say this, she’s flippin’ gorgeous. And the greatest joy. But I worry all. the. time.)

Okay. Formalities out of the way, I’m back today because this is a space dedicated to trying to make a baby and all the ups and downs that go along with that pursuit. Lately, the thought of a number two has crossed my mind a few times. Specifically, a boy number two. Given the whole gender craziness we went through with J, DH and I both have this sense of loss. The moment we found out J was a girl, we were both given this mind-blowingly AMAZING gift, but we also lost this boy we had been dreaming of, bonding with, picturing. Loving.

In a strange way I feel like we’re owed our boy. That’s crazy I know but it’s a feeling I can’t shake.

Some ladies out there who were roughly “cycling” around the same time as me are already thinking of or in some cases are pursuing or already pregnant with their next little one(s). I regard this with this whole mix of emotions. On the one hand, I’m jealous. Jealous that they’re there, and they’re confident, and they’re doing it. Also? I’m scared. Because as much as I want it, I don’t know if it’s the right time. I don’t know if I’m ready to share my body. I don’t know if I could handle another traumatic pregnancy, and birth, and infancy. And I think you always risk that, every time a baby is made. And then there’s the big thing.

Which is, a not-so-insignificant part of me is terrified that IVF is to blame for everything that went wrong with my pregnancy and J’s health. Maybe that’s unfair to say, maybe that same part of me is just looking for something to blame or just to make some sense of it all. But I didn’t have any of the main risk factors for pre-eclampsia or gastroschisis. Except IVF. Which sucks because, there’d be no J without IVF, I’m painfully aware of that. But I’m terrified that if we did it again, we’d face the same or some other struggle as a result.

In my darkest thoughts, I’ve always worried that we forced the issue with J. We MADE Mother Nature give us a baby where maybe she wasn’t ready to, or ever going to. And so, we paid a price. WRONG, I know. Effed up. But these are thoughts in my head sometimes.

And then I think of all the healthy babies born as a result of IVF. I wonder if any of our embryos are destined for a breathing existence on this earth, outside of their cold frozen little petri dish or glass vial or whatever they’re in. Do we owe them something? Now that we’ve created them? Or would it be better to try on our own, just try, because who knows? Maybe? Before we tumble down that path again.

Can we even get pregnant on our own? The curse of the unexplained. We did once, unsuccessfully, a long time ago. Will our new insurance even cover infertility? Another dark curtain I’ve yet to pull back.

More importantly, are we ready. Sometimes we think all the struggles with J would go by much faster if we had something else to focus on, something positive. Or would that intensify the whole thing. Make it that much harder? Is it unfair to her to make another baby right now? Is it unfair to not?

J is nine months old today. Things are not where I thought they’d be by now, with her health I mean, but I’m making my peace with that, or at least desperately trying. When she turns one is when we might get serious about all this but clearly, many things need to be figured out, sorted through, dredged into the light and dealt with before that can happen. But the first step is figuring out what those demons are. And that’s what I’ve always adored about IF blogging.

So if you’re still there, thanks for listening.