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!