Friday, June 23, 2017

TWO!

Last Sunday, my brand new baby who was only born a few weeks ago turned TWO!



At her check-up the other day, she was 23 pounds and 34". Skinny little string bean, like usual. She's starting to become more sure of herself, in terms of being able to traverse stairs and rocks and roots and things, and now is the time that I get to start having mini heart attacks every time I take her to the playground.

Language is also through the roof. It's so fun to be able to start having real conversations with her, ones where she can speak almost full sentences. She gets the concept of funny, which apparently doesn't usually happen this early, but knowing her parents it makes sense. She also gets frustrated quickly, which is her mama through and through.



We took our teardrop trailer out for a four-day road trip/camping trip last weekend for her birthday. We bookended two camping nights with two nights at my mom's house, because we haven't taken the trailer out much and need some practice with it. And with camping with a toddler. The first day we went to the John Day Fossil Beds and camped in a campground east of Pendleton, and it rained on us. And I forgot the propane so we had no way to make coffee in the morning. Oopsies. Then the second day we wandered around Pendleton, spent some time fixing the hatch on the trailer (it wasn't latching correctly), had a yummy lunch and spent the afternoon and night at a KOA. KOA's are not really my favorite, but we wanted something easy. It had a little playground, which was nice for part of the time, but the rest of the time older kids were throwing gravel down the slide and climbing on the roof of the play structure, so we couldn't play there.

Back at Mom's, we had a sweet little family birthday party. Mom made white cake with strawberries and whipped cream frosting, and Ivy got some great gifts, including a balance bike that she's been talking about for weeks but now refuses to ride. Heh. And an orange soprano ukulele, one that she can "tune" and bang on the floor and stretch out the strings all she wants, to save my ukes from toddler abuse.

This week we've seen some signs of sleep regression. It's a combination of the normal 2-year-old regression and not having her daycare nap routine, I think. Our daycare provider takes two weeks off in the summer and this year Cory is staying home with her the whole time (besides our extended weekend). He's had kind of a rough time getting her down for naps, but on the bright side I was able to put her down for bed over an hour ago and then come downstairs and eat ice cream in peace. And write a blog post in peace. Ahhh.

Overall - she's a pretty cool kid. I feel very lucky every day, especially around her birthday when I pull memories of her birth and details of her NICU stay and our days apart, recovering in separate hospitals; and mull them over. They always bring with them those old feelings of loss and longing that were such a big part of my life for so long. They're still there, they'll always be there, but they've got a slightly different hue now that Ivy is our world, colored with gratitude and joy every time she smiles.

Tuesday, June 13, 2017

Another Dilation

Miss Ivy was a trooper yet again last Friday, when she had what the surgeon called a prophylactic dilation. And after three weeks of eating everything in smoothie form, she was definitely ready for it!

We had an early call time again, 5:30am for a 7:30am procedure. Cory stayed behind because he had some kind of stomach bug, and as a little bit of insurance against catching the bug, Ivy and I slept in our little teardrop trailer out on the patio. It rained a little bit overnight, and it smelled and felt so good to be breathing in the fresh wet air. Even with a window open and the fan lid up a bit, we were still nice and warm with long sleeves and one comforter. I knew I wouldn't sleep well anyway, trying my hardest to wake up on time, so it worked out well to sleep in the trailer.

Up we got, and Cory made me some coffee for the road, and we made it to the hospital and got checked in. Ivy was more interested in the ride-in cars last time than she was this time; we still made it around the hallway loop several times but she ended up having a little tantrum because she wanted the toy pterodactyl that was hanging from the ceiling in the nurses' station. Luckily, that was towards the end of our wait, and soon the nurse came in with some Versed to help Ivy relax. Like last time, Ivy grabbed the syringe and wouldn't let go of it all the way to pre-op.

We did a little more waiting in pre-op, and we said hello to the anesthesiologist and the nurse who was assisting in the room, and the surgeon. And then they wheeled her bed away and I showed myself to the waiting area.

Tangent: I really wish there were no TVs in the waiting room. The first time we were in there, someone had turned on a news channel whose programming tends to lean the opposite of me, politically. This time was more benign - a show about cats - but it was asinine and seemed to be more commercials than programming. I found a spot at a table as far away from it as I could.

When the surgeon was finished, he came out and chatted with me for a few minutes. He said everything went easily and well, and he didn't see any reason for us to see him again (as long as we keep cutting her meat extra extra small). He told me to make an appointment for a followup in July, but to cancel it if she's doing well. That sounded good to me!

A few minutes later, a nurse led me into post-op, where another nurse was holding a rather upset Ivy. She did NOT want to be held by the strange lady. They brought me a rocking chair and we cuddled for a few minutes, during which a still-kinda-drugged Ivy lost control of her head a bit and bonked it on the foot of her bed. Oopsies. When she woke up a little more, we were escorted back down to the day surgery unit so that Ivy could have a popsicle and get her IV out. The nurse pulled the TV over to our chair and turned on Minions for Ivy, who was uninterested (and neither was I). Luckily, it wasn't much time before we were discharged.

The rest of the day consisted mainly of Ivy being tired, sleeping fitfully, and being cranky while she was awake. I stopped for lunch with my dad and sister before we headed home, and for the first time ever I had to leave a restaurant to keep Ivy from disturbing the other customers. She threw a spoon, which she never does, so I asked for a box and the two of us walked up and down the street for awhile and petted a dog while my dad and sister finished their lunches. I really think that, though some of it was that she was tired and a little sore, the rest of it was that she just REALLY wanted real food and wanted no part of the pouch I brought for her. The surgeon told us to start re-introducing chewable foods at around the week mark, but I knew how tired she was of her diet so I decided to start easing her into them the next day, and we both enjoyed a weekend of fight-free meals! Hooray! She was happy to eat what I gave her.

I hope with these dilations that we are now set up for success. As much as I appreciate our surgeon for all that he has done for Ivy (and that's an understatement - he saved her life!), I'm happy to not have to see him anymore. So that's our goal: cut the protein smaller, and get this girl eating!

Sunday, May 21, 2017

#3

Ivy is such a champ. It's so amazing to watch this kid maneuver through hospital visits and strangers poking her.

On Wednesday morning, I called the surgeon's office as soon as they opened. The doctor who works with us often (she works with the surgeon and often our routine checkups were with her) called back after having made an appointment for us with the radiologist for early afternoon, to give us some time to get up there, and said that the surgeon had earmarked Wednesday morning for us for another dilation, if the esophagram showed anything. So Cory opted to stay home, since we were going to just go up and come back.

Ivy was pretty nervous this time, but she laid on the table bravely, and only cried a little bit. They filled a sippy cup with a contrast she hadn't had before (it's always been barium before) and we did what we always do - suited up in our lead aprons and fed her while she laid on her back and then on her right side. And when we were done, I snapped a quick cellphone picture of the screen. (I'm gathering a collection of them, apparently.)



We ran upstairs to the surgery office when we were finished, and our regular nurse helped us out, before the surgeon came in. I told him what I thought it was - lunch meat - and he said "ah, yes, protein again! Just have to cut it smaller!" I told him she had eaten that same lunch meat cut in that same size a dozen times before with no trouble, though I was more telling my guilty self. He offered to admit us so that we could spend the night in the hospital and not have to go home and come back, but last time we did that was awful, so I stayed far away from that idea. Then he ran off to check on insurance stuff and never came back, but another nurse came in to tell us what time to show up in the morning (5:30).

Back at home, at bedtime, I tried sideline nursing Ivy in bed. But the milk was coming back up, so Cory had to get her to bed without me. It was hard, but after quite awhile she was out. And then of course she woke up a few minutes after I went to bed myself, and I put her on the other side of me to try to nurse her back to sleep and the milk went down just fine. So the meat must have been on one side of her esophagus but not the other. She went back to sleep, and Cory went to sleep, and I stayed up for quite awhile longer, letting my brain process for awhile.

3am came pretty early, but one nice thing about going to the big city at dawn is the manageable traffic and the plentiful parking spaces. Ivy slept in the car, so by the time we got checked into the children's day surgery unit (because it was scheduled, we weren't admitted) she was well-rested and in a good mood. That made alllll the difference.

We had an hour until we had to be in the OR, so after taking vitals we were free to roam around the halls. There were several other kids there too, but most chose to stay in their little rooms, so the halls were wide open for us. In one corner, a dozen ride-on toys were parked, so we walked around the halls about sixteen times, pushing Ivy in cars and ambulances and taxis and trucks, until we were summoned back to our room to be transported to the OR.

The nurse gave Ivy a syringe of an anti-anxiety medicine, so that she would be relaxed when they took her away from us, and Ivy sucked on the empty syringe for half an hour as we got checked into the OR and waited to talk to the anesthesiologist and the surgeon. I overheard the people next to us saying goodbye to their infant who was about to have a 6-hour heart surgery, and I wanted to give them hugs. Ivy settled into her bed as the meds kicked in, and they wheeled her into the back.



Since we're experts at this now, we knew how much time we had (and we were more relaxed!) so instead of huddling in the surgery waiting area, we walked over to the cafeteria and grabbed breakfast and coffee and brought it back to the waiting room with us. It was really nice to feel so much less anxiety over the procedure, even though there was still a lot of anxiety over her general condition and what we were going to do to keep food from getting stuck again. But breakfast made the hour go quickly, and then the surgeon came in to talk to us.

The surgeon had poked the stuck food down her esophagus, and with just a little nudging it went down easily. He said again that though he had dilated that day and planned to do it again, it wasn't a stricture that was causing the food to get stuck, it was a lack of motility at the original repair site. I asked again if we should just avoid meat altogether, and he said it wasn't necessary, we just had to cut it up very small (like mincing, I assume). And he assured us that it would get better (we know that, but it's nice to hear).

After another few minutes, a nurse escorted me into post-op, where Ivy was just waking up. It was quite a difference from last time, when she was so sleep-deprived from the horrible sleepless night in the hospital that she half-woke from anesthesia and then took a three hour nap. She woke up, took a few minutes to be groggy, and then by the time we carried her back up to our little room in the day surgery unit she was doing pretty well. She always has some big coughs just afterwards, and tape residue around her mouth, and her breath smells like plastic for a few hours. The nurses brought her apple juice and a grape popsicle, and she made short work of them. And then we got our discharge papers and got to go home! As much as I appreciate the hospital, it was really nice to be able to play in the halls and be in and out relatively quickly, and not have to constantly be on the monitors in the day surgery unit.



I assume we had a prescription for painkillers (we did last time), but we didn't fill it (and didn't last time, either). We went home and gave Ivy some Tylenol in the afternoon, which was all she needed. And Ivy is back on purees and liquid until she goes in for another dilation on June 9th. So 22 days of liquids. Poor thing.

Monday, May 15, 2017

Guilt

Last Thursday was Ivy's post-procedure check-up, after two weeks on pureed food. We had a good discussion with the surgeon to ask what next steps were. He said to keep giving her chicken, just cut it up smaller. And when she got something stuck, even if she is able to bring it back up herself, he wanted to know about it; as he would likely dilate again, even though he thinks biggest reason things are getting stuck is the lack of mobility at the surgery site.

I've been struggling with some pretty heavy guilt today. When I picked Ivy up from daycare, I got a report that something (likely lunch meat) had gotten stuck in her esophagus at lunch, and while water was getting down at the end of the day, purees weren't. I confirmed it at dinner - some purees were getting down, and plenty of water too (thank goodness she wasn't being obstinate and spitting everything else), but that was it.

So the current plan is to monitor her through the night and into the morning, and call the surgeon in the morning if things don't get better. She has had lunch meat stuck before, many months ago, and it ended up coming up the next morning without me even knowing it was stuck, since breast milk was getting past it, so I'm hoping this is a similar situation. I was able to get her to chug some "milkshake" (Pediasure) earlier, and I'm hoping it forced the food down. In the meantime, she's in a happy mood, and is singing and playing and being generally happy and normal.

But boy, this guilt. Is this happening because I'm not cutting her food small enough, even after two trips to the surgeon? I'm definitely less conservative than Cory is, in terms of bite sizes, because almost everything goes down just fine... until it doesn't. Is it something we just have to live with, and nothing we do will keep it from happening? I have no idea what the norm is, because there's such a range of severity with EA/TEF kids and most of the moms in the Facebook support group (the ones that post, anyway) have kids with g-tubes and oral aversions. I just keep coming back to how I should be more careful, and cut everything so much smaller than I think I should. I don't know. I just know that it feels a lot like my fault, whether or not it is.

Wednesday, April 26, 2017

Again?!

On Sunday evening we turned on Fantasia while Cory and I ate some Trader Joe's orange chicken and rice, and I started working on something for Ivy for dinner. Ivy popped over to my bowl for a few bites, and then sat down for dinner... and nothing stayed down. Crap. I knew exactly what bite of my chicken was the culprit. I tried pushing water, and she mostly just spit it down her front, and whatever did go down came back up. I tried pineapple juice, and she had a few tiny sips (which came back up) and wasn't interested in any more. So then we hopped in the tub. Usually I tell her not to drink the bath water because it's got icky bottom germs in it, but this time I let her help herself, and filled up her little bath toys with cold water from the sink as well. She drank quite a bit, but it all came up. So we got out of the bath and got in bed around 8, and I tried nursing her; she could get about ten seconds in and then started poking her fingers down her throat and I'd have to quickly push her into a sitting position so she didn't choke on the milk.

So I called the surgeon's office. I knew if nothing at all was getting down, it was time to start worrying about dehydration. The on-call resident conferred with her partner and called me back, saying "wait for a call from the hospital, saying a bed is ready for Ivy, and come on up." I got off the phone and had a tiny tantrum at the foot of the stairs. I couldn't believe I let it happen again. I was SO upset at myself.

While we waited for the hospital to call us, we hurriedly packed some toiletries and I got dressed. We left Ivy in her pajamas and grabbed some clothes for the next day, and a few dolls and books. It didn't take long for the hospital to call us, and we were on our way by 9:30pm.

Cory had gotten up that morning at 2am, as he was working on a presentation for work, so he was super tired by then and I drove us up in the dark and the pouring rain while he and Ivy slept a little. It was actually a really nice drive, just 'cause usually Portland traffic is the pits. But it was nice and light at that time!

We got to the hospital and went up to the pediatric unit, and settled in. The night nurses put Ivy's pulse oximeter on her toe, and set to work putting in an IV (for fluids) while she sat on my lap. She bled pretty good, but they got it in, and she DIDN'T CRY. I was amazed. She barely flinched at all. Kind of cracked me up later to think that she's the one who says "owie!" any time a kid touches her. Silly thing. The on-call doctor who I'd talked to on the phone also stopped by to check in on us and have us sign a consent form. "It looks like [a surgeon we hadn't met] can get Ivy in at 9 or 10, but she might be able to switch her with the 8am surgery." That was great news

By midnight, the nurses had finished taking vitals and let us go to bed. But by that time, Ivy was exhausted and stressed out, and wasn't able to nurse to sleep, so she cried and fussed until 2am, when she finally fell asleep in my arms and I was able to get out from under her and go to sleep next to her. (I didn't even try to get her in the crib they gave her; I knew she wasn't about to allow that to happen.)

At 4:20am, she woke up suddenly, which was actually kind of a good thing because about 15 minutes later the nurses came in to check vitals, which would have woken her up. I got to watch the dawn begin, which was something I did a lot when we were in the NICU, and it was nice. Ivy fell asleep a little after 5am again, as did I, until 7:30 when the surgical team came around to check in. They had decided to give her an x-ray first, before going in with the scope, which was going to mean a little longer stay. The surgeon said "we'll keep in touch," which brought me back to our original NICU stay, when we suddenly realized we were on hospital time, which meant "wait around for forever, and then suddenly things will happen."

We passed the time as best we could, watching a lot of YouTube videos (she calls them "La-La" because this video was one of her first favorites to watch), and reading books, and taking off her doll's clothes, until about 10:30 when a hospital worker came to pick us up and take us down to radiology. He put us in a little holding area while we waited, which was fantastic for Ivy because she wasn't hooked up to her IV or oximeter so she got to run up and down the little hallway outside all the x-ray rooms and get some of her energy out.

And then in we went, and she did a great job lying down on the table and calmly drinking the barium while the radiologist watched the x-ray screen. (Last time we did this, she cried and I had to sing to her to calm her down.) She even asked for more barium when it was all over, the poor little hungry thing. The radiologists were amused.

Then we were put back in the holding area while we waited for our transport back to pediatrics, so Ivy and I ran up and down the halls some more, and once we got back upstairs we hung back a little bit and explored the pediatric ward. We looked out some windows and climbed on some benches and walked around. Our normal surgeon's partner found us in the hallway and let us know that he decided to add her to his caseload that afternoon, which was nice to hear - he knows her esophagus well. We said goodbye to her and wandered the halls a little longer, until Cory texted me to say our nurse wanted to hook her back up to the IV.

Cory ran down to get him and I some food, which we took turns eating while hiding in the bathroom so Ivy wouldn't see us. Anytime anyone came by to ask if they could get us anything, Ivy started asking for "rice?" or "broccoli?" which broke my heart.

I was able to get her down for a nap a little after noon, and then a little over an hour later a transport suddenly showed up at our door, with no warning, to take Ivy down to the operating room. The nurse appeared as we were scrambling, apologizing, as she had only just found out herself. Hospital time strikes again. We were led down into the basement of the hospital, and said hello to the anesthesiologist, who happened to be the same one as for her original repair, which was cool. He was concerned that she wasn't going to appreciate them taking her away from me for the surgery, so he popped something into her IV, and after a few seconds she started having a hard time holding her head up and she started giggling. And then they took her away and we settled into the waiting area.

We always think it's not going to take as long as it does. They have to work on the anesthesia, and then do the procedure, and then she has to sit in post-op and wake up a little before they let us see her, which takes about twice as long as they say it's going to. So we wore down the batteries in our phones trying to pass the time for about an hour, and then the surgeon came out to tell us it was finished. He confirmed it was a piece of chicken again, and that it was stuck because of the lack of muscle motility at her repair site, but he went ahead and gently dilated her esophagus just a tiny bit to see if that would help, even though he didn't think it necessarily would. He said again that chicken and hot dogs are the most common things that get stuck in TEF kids' esophagi, and that we should just cut the pieces smaller. He said he understood us wanting to help her practice on slightly bigger pieces, though.

Someone came awhile later to take me back to post-op, where Ivy was practically climbing up a nurse to be held. She handed her to me, and Ivy immediately fell back asleep. So I sat in a rocking chair and held her for several minutes until our transfer came, and I carried her sleeping body all the way back up to her room, and sat down, and held her for three more hours. Poor girl was exhausted.

At that point, really all we were waiting for was for Ivy to drink clear liquid, and then milk, and have a wet diaper. Her pediatrician called from Corvallis, and said something like "I know you're a good mom..." and expressed concern that the same thing had happened twice now, and suggested maybe we stop feeding her chicken altogether for a couple of months. (I don't think I'll go quite that far, because it had been three months almost to the day since the last time, so holding off at that point would have done nothing; but I do think we'll probably stick to ground chicken for awhile.) Cory went back down and got us some dinner, which we ate, and by then I was getting pretty sore from sitting in one spot while she slept, so I decided to try to transfer her to the crib. And of course she woke right up. So we started in on a sippy cup of apple juice and pedialyte. She slowly drank about half of it and then was uninterested, and just wanted to nurse. So I let her nurse, and ended up pouring out most of the rest of the cup and told the nurse that she drank it all. (Bad, I know, but I knew she was doing OK and I wasn't going to wait a few more hours for her to finish the juice when she was also doing just fine with milk!) She drained me dry, and had a wet diaper soon thereafter, so the next time the nurse came by to do vitals we let her know we were ready to go home.

Ivy did fantastic yet again as the nurse struggled with several layers of tape and removed the IV, and we packed everything up and were out of there. Ivy immediately fell asleep in the car, and I caught a few winks myself. We got home around 10 and fell into our comfy bed.

Ivy has a checkup with the surgeon on the 11th, and until then she can't eat anything thicker than yogurt. This will be an interesting couple of weeks! Luckily she is still eating pouches of fruit and veggie puree, and enjoys yogurt. I'm grateful again for the little food processor/immersion blender that I picked up to make my own puree, it has already come in handy to make fruit smoothies and a macaroni and cheese frappe (ew). And pureed cottage cheese.

The guilt was strong with this one, friends. I was pretty shattered that it happened twice in three months, with the same food. It's so hard to balance being super cautious with helping her practice with potentially difficult foods. And as she's still so tiny as it is, having to avoid a healthy food that she likes is sad. But again, throughout all of this, I'm reminded of how good we have it and how much worse it could be. And thankful that we have such a good surgeon just an hour and a half away.

Monday, April 3, 2017

See ya, March.

We are closing in on two months until Ivy turns TWO! Good gracious, how time flies.

It's kind of hard to update here, mostly because I feel like the milestones aren't coming as furiously as they were during her first year, and they're a little more complicated to explain. For instance, I can't just type out a bulleted list of her words, because her vocabulary is exploding. But let's see if I can categorize some stuff into at least a semblance of an update.

Words
Might as well start here since I just mentioned it above. Ivy's favorite words are "no" and "owie," like any good toddler. She usually takes the last word or two from the things we tell her and repeats them in the form of a question. "Time to get your boots on!" "Boots on?" It happens especially if the words are new. I also can see her struggling to remember words, which is fascinating to watch - before Ivy, I thought that the reason there was a communication breakdown between toddlers and their parents was because they physically couldn't quite say the word yet. But I watch Ivy try out a few collections of letters before she hits on a real word. The one that happens the most often is that she says "doo" instead of "dip."

We are working on words for colors; she's got a few colors sort of figured out but it depends on what shade or what object we're looking at. She can count to ten, though, and has been able to do that for awhile. She's got some of the alphabet as well- and this weekend she started pointing out the letter A on things. Whoa.

Personality
Ivy does NOT like it when kids touch her. It's really strange. She is cool with initiating touch herself, but if one of the kids at daycare tries to hug her, she yells "owie!" and seeks out the nearest mama. And if they take a toy that's in her vicinity, especially if she doesn't know the kid very well... bring on the waterworks. Learning to share is hard!

We also have the normal shyness that I think most kids have. It takes awhile before she warms up to new people (or people who she doesn't really remember). She gets friendly relatively quickly, unless we're at the doctor, which she now remembers is the source of shots and strangers touching her, in which case she gets super clingy and wants to nurse.

In all other ways, she's a pretty great kid. She likes to help, she's generally in a good mood (though toddler molars are the pits), but see above for her favorite word. Most of the time it's not a big deal, though when I'm in a hurry and she's dragging her feet I get a teensy bit frustrated.

Food
This girl eats like a bird, still. It is hard to get much into her. I was pretty stressed out about it a few weeks ago until I remembered that she also didn't drink much milk back when that's all she was ingesting. The other babies drank upwards of twice as much milk as her in a day. She only weighs about 20.5 pounds, which is still pretty much off the charts low, and I'm kind of steeling myself for the doctor visit in June. She seems like she has plenty of energy and is happy, so I think in general she's fine, but it takes an hour to eat dinner every night because we're trying to get just one more bite down her throat. Cory has started to make deals with her: "If you eat one more bite of meat, you can have a bite of this dessert!" I usually take the "woo, look how silly I am; oops you got some food in your mouth!" tactic, or sing little songs about eating, or make funny noises or that sort of thing to get her to eat more.

One of the things I really need to do but just haven't yet, is meal planning for her. We tend to not eat a huge variety of things because neither of us is good with meal planning, and I do want Ivy to try lots of new things. But because she's got toddler taste buds, sometimes I bank on new stuff being yummy and it's not. I also want to get as much protein and good fats into her as I can. So I need to sit down and plan out lunches and dinners and snacks for her soon.

Our usual favorites are avocado, tomato, lunch meat, broccoli, chicken, tuna, peanut butter, yogurt, bananas, blackberries, and of course anything sweet. She hates milk (any milk besides mine) and eggs (even in things like Dutch babies).

TEF Update
Things are going really well with her esophagus lately! When we were on our east coast business trip in late February, my mom came with us to watch her during the day and made sure she cut the food extra small because she was worried about Ivy getting things stuck. Since then, there have been very few times Ivy's gotten anything stuck! I'm not sure if it's because she's got four molars now so she can chew stuff a little better, or what, but it's been really nice. We still cut things pretty small, and avoid certain foods, but even things that she's historically had issues with (like tomato skins or chicken) have been fine.

Nursing
Happily, there is no end in sight to the nursing! I love that Ivy still wants that closeness. She usually nurses first thing in the morning when she wakes up, and then as soon as we get home, and then to fall asleep. If she wakes up in the middle of the night, she needs to nurse to fall asleep, which I think will slowly stop on its own as she gets older. We co-sleep, so it's pretty easy access. The only time I ever feel ever-so-slightly tired of nursing is those nights where she doesn't feel well and hangs on for super long periods of time. It ends up making my back hurt by morning, from sleeping in odd positions. For a few months I had some near-constant SI joint pain, which I realized was from the way I was sleeping, so I've been adjusting my hips just a bit every night and it's much better. But sometimes teething and being sick just make for a rough sleep.

Sickness
Oh man, it has been the WORST early spring. We actually avoided being sick most of the fall and winter, except for a couple of colds that moved into Ivy's lungs and needed a nebulizer treatment or two. But I think we're on cold number 7 in a row right now. It has been two months of a raw nose and waking up coughing and, this weekend, losing her voice, which is kind of cute but I still feel bad. Luckily, none of these colds have needed a nebulizer, and most of them have been so mild they haven't come with fevers either. Cory has had bronchitis for almost two months, too, which was pretty awful but is finally just about done. I'm thankful to still be nursing so that my immune system is still pretty superpower-y. Allergy season is coming, though, after a very wet winter. Grass is my kryptonite. We'll see if nursing can combat THAT. Anyway, you can leave us alone now, germs, we've had our share of sick.

Siblings
I don't know why this is suddenly happening, but the last month or so I've been feeling ready to try for another. That always brings up complicated feelings, because I get into internal arguments with myself about why I should be hopeful or why I shouldn't even think about the possibility of it working when it hadn't for five years. ("But I had that polyp removed, maybe that was the biggest problem!" "Bigger than the low sperm motility problem?!") Right now the plan is to not make plans. Cory doesn't want to go through IVF again (interestingly, when we briefly talked about it over the weekend, he was more against IVF because of how physically and emotionally difficult it was, not how financially difficult it was; when finances was the biggest reason he didn't want to try again, last time), and I don't really want to either, but at the same time... I kind of do. We had decided when I was pregnant that we wouldn't do IVF again, and that if it happened naturally it happened. But of course I still have that little niggling wish in the back of my head, or little niggling disappointment in not being able to build a family the way I want to, that I don't think will ever fully go away.

Whoops, this wasn't supposed to be about me. But look, a nice long post! Ha!

Monday, March 27, 2017

Heartbeats

When I was pregnant, the overarching theme of those ten months, the focus, the moments that could ground me or send me into a panic, was heartbeats. It was that way from the very beginning. Did the embryo implant? Could we see the tiny heart beating at 20dpo? What about 22dpo? When we saw that first tiny flicker of Ivy's beating heart, it triggered such a confounding feeling of joy and worry, and it took weeks of followup ultrasounds and then Doppler uses before the worry mostly faded. When my heart rate started to go up a short time into the pregnancy, I'd sit as quietly as I could at the beginning of each prenatal appointment, breathing slowly and half-meditating, telling my heart to relax, but in the end it took medication (that I'm still on) and borrowing a blood pressure cuff from a friend to monitor myself every day. And then in the waning days of pregnancy, sitting for an hour at a time in the clinic's recliner, belted with monitors, knitting wool soakers to keep the minutes ticking away, listening to the quick heartbeat of someone I'd never met but already loved, already was so connected with.

Last night as she slept next to me, I spent a few moments (as I usually do) smoothing Ivy's hair and kissing her little forehead. I rested my fingertips on her belly and felt her slow, even breaths. And then I found her heartbeat, silent under my fingers (so unlike the amplified galloping I heard during prenatal appointments), beating delicately under her little ribs, and I realized that it may have been over a year since I last searched for her heartbeat. All of the prenatal appointments came rushing over me as I felt the tiny thump. So did how I felt during what was likely the last time I felt her heartbeat, when she was newly home, her tiny body between Cory's and mine on the bed, when I couldn't sleep for the disbelief and overwhelming emotion of having a REAL LIFE BABY after all these years and treatments and needles and days in the NICU. Every day I'm thankful for our miracle, but sometimes the littlest things are the greatest reminders of that.

Wednesday, January 25, 2017

Hospital Visit

We have spent the last few months since my last post being kind of insulated and routine-y, going to work and coming home and doing chores and enjoying watching Ivy continue to develop. I had a post all set to go with a list of words that she could say, but then she had a vocabularial explosion (heh) and I couldn't keep up. She's even started rocking the two-word sentences. So the post remains a draft.

Christmas was also great fun; I loved watching her as she got the hang of unwrapping gifts, and played with her cousins and ate little bits of cookies and things. Oh, and she had a pediatrician appointment last month, where she finally realized that doctor's office = shots and was duly upset, and a routine appointment with her TEF surgeon, where she doesn't get shots but was still concerned that they'd change their minds at any moment. Both appointments were successes; in fact at the surgeon's visit we saw him for a total of three minutes.

For Sunday's dinner, we had some wonton/dumpling things and some stir fry with chicken. Ivy shared out of my bowl, and since I was cutting up individual bites as I went, I cut them especially small and fed them to her.

I sometimes have wondered about whether I cut food up too small, whether Ivy has mostly grown out of needing me to do that extra effort. Sure, things get stuck a little bit, but she has figured out that if she sticks all four fingers down her throat, all the way up to the joint where her fingers meet her palms, she can gag herself and bring up whatever is stuck. It's usually things like tomato skins, or chicken, or various things that she doesn't chew. It scared me a bit at first, and I even asked in the TEF community on Facebook if I should be worried about her new habit. The consensus was that she's pretty smart for figuring out how to get the stuck food out, and I eventually grew used to it. I remember even the other day when I picked Ivy up from daycare, one of her slightly younger classmates was eating whole pretzels. I thought "hm, if other kids are OK eating that stuff, I wonder if Ivy'd be able to work it out?" But the previous week she'd gagged herself and brought up a small piece of ham lunchmeat from 24 hours prior, so I was pretty sure I wasn't being entirely overprotective with my small-cut food and my tomato skinning.

On Sunday night we got ready for bed, and as Ivy was nursing at bedtime she suddenly stopped and stuck her fingers down her throat. She'd only been drinking milk, and had nothing else since dinner, but the fact that milk came up made me wonder if there was something stuck in there, preventing at least some of it from going on. I made a mental note of it, and gave her a bunch of waterwent to sleep. (We ended up having a terrible sleep - she nursed on one side so long that it started to get painful and I tried to pop her off to switch sides, but she was awake enough to fight with me about it. She was wide awake for at least an hour, and I think only half-asleep for lots longer than that. Could it have been because whatever was stuck was uncomfortable? I wasn't sure.)

The next day, we were at lunch when we got a text from daycare, saying that Ivy wasn't able to keep anything down. She'd take a bite and then gag herself, and it was happening a lot more than usual. So we took her home and I left a message for the surgeon - if it was still stuck and bothering her that much, it was starting to seem like a concern.

As I waited for a call back from the surgeon's office, I fed her pineapple juice, which I've read has an enzyme or something that helps stuck food go down, and experimented with giving her purees and very small bites of food. Everything came up, save some of the water and pineapple juice. She didn't act any different than usual, other than the frequent gagging, and that made me feel good - and she had wet diapers so I knew at least some liquid was getting through.

Finally, the surgeon's assistant called back and asked a bunch of questions. At first she'd been leaning towards having us go in that evening, but as Ivy wasn't dehydrated and we were an hour and a half away, she consulted with the surgeon and set up an esophagram (x-ray) for 10:30 the next morning. Almost immediately after the phone call (around 4pm), Ivy fell asleep on me and ended up sleeping for fourteen hours straight. (Hooray!) I took the opportunity to get a few things packed up too, as the surgeon had said there was a chance Ivy would be admitted, depending on what was going on in there.

In the morning, we packed more things (a couple changes of clothes for her and me, in case she puked up barium from the esophagram) on me), some books, a doll or two, etc. and headed up to Portland. Ivy was not excited about the x-ray; she cried a lot as we forced her arms up above her head and pinned her down. But when we were done (it's a pretty quick procedure) I glanced up at the monitor and and could immediately see that something was stuck in there.

We got Ivy dressed and walked up to the surgeon's office to await further instructions. "We need to admit her; we are just waiting for them to get a crib in the room." So we went down to admitting, and then up to the 7th floor of the children's hospital, 5 floors above Ivy's first room in the NICU.

We were third in line on the surgeon's schedule, so we hung out in the (really nice, big) room and tried to play with Ivy a bit and then try to get her to take a little nap. But without being able to nurse, and being in a strange place, she was not at all interest in letting her guard down. It ended up being OK, because it wasn't long before it was Ivy's turn.

We were escorted down to the pre-op room in the basement of the children's hospital, where we talked about the procedure with the OR nurse and the anesthesiologist and the nurse who would be assisting in the procedure. Everyone made sure to repeatedly reassure us that it wasn't a big deal, it wasn't actual surgery, but we really weren't worried - after all, it was being done by the surgeon who did her original esophageal repair. And the procedure was to put her to sleep with gas, put an IV in her hand while she was under, and send a scope down her throat to see what was stuck and pull it out. They would also check to see if she needed a dilation (if the food was stuck because of a narrowing of her esophagus) and do that while she was under.

Then the nurse grabbed Ivy and whisked her away, and we were ushered into a waiting room, where we waited for about 45 minutes, and then the surgeon came out with a little jar of a rather hard-to-identify piece of half-digested food. (And it was a small piece too: about the size of the tip of my finger; easily swallowable by a toddler.) He said everything went just fine, and she had no stricture, but that the food just happened to hit the exact spot where her muscle motility pauses.

I'm not sure how much I've explained that here, from her original surgery, but when the surgeon cut and sewed her up, it meant that the muscles in her esophagus don't move food down in one smooth motion: they stop at the repair site and then pick up again just below.

The surgeon said she'd probably take another ten minutes before we could go in and see her, but it ended up being more like twenty. And then the nurse came in and led us to our sweet sleeping girl, lying on her side with her arms curled up and the sweet little rosebud mouth that she gets when her face is a little squished, just like the day we first met her. Her daddy was the first person she saw when her little eyes opened.

Once she was fully awake (and a little upset), I was able to carry her as we followed the nurse back up to Ivy's room. They took her vitals and we showed her nurses the little vial of what we concluded was likely chicken. (They were all wondering what it was in there!) And then, finally, she was able to NURSE. That was the best part of the day - it was so hard to tell her no when she was in a strange place with strange people and tired and uncomfortable. She nursed for a good long time, and we ordered room service (as a nursing mom, I got a "free" tray and Cory had to pay extra for his) as we hadn't eaten anything since breakfast, aside from a tiny vending machine snack while we were waiting for the procedure to finish.

We had to wait for a wet diaper, which was delivered about an hour after nursing, and then we got discharged. The nurse warned us that IV removal was usually not very fun for little ones (I had been dreading it too) but Ivy just sat on Cory's lap and watched the nurse pull it out. And then we were free! Ivy fell asleep at about 7, as we were on our way home, and we were home by 8. (She only slept until 4am, but that's another story.)

Today she's eating and drinking and acting like normal. I did give her a few tiny pieces of chicken with her dinner tonight, after a lunch of soft foods, and she has stuck her fingers down her throat a couple of times which worries me - but hopefully I'm just being overly concerned. Guess we'll see - that would almost be amusing to go up twice in two days for the same problem twice over. Almost.