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Tuesday, September 24, 2013

My Helper

I have a helper that loves to participate in chores, like unloading the dishwasher, wiping up spills, mopping and vacuuming the floor, watering the plants, and walking our Boston Terrier, Mobi.


video
Have a great week!

Tuesday, September 17, 2013

Thoughts a Year In

We are now over a year in from the diagnosis that changed our lives. In many aspects, life is exactly the same as it would have been if Belalu didn't have hypochondroplasia. Nevertheless, it's always in the back of my mind, but just as one facet of the many that make up who she is and how she'll face the world.

I am not afraid of different. I love that my daughter is different, and hope that my son will be, too, in his own way. I do not wish for either of them to have "an easy life." That does not mean I want their life to be hard, but I won't wish away the difficult moments. Easy does not make strong. Easy does not invoke contemplation and growth. Easy does not stir us to respond to challenges that compel us to shape our values and define who we are.

I cannot anticipate the challenges either of my children will face. I just try to prepare them to be morally and emotionally strong, compassionate and respectful to themselves and others, and to have integrity. To search for their passion and to value their place in the world. With these tools, I hope they will be able to face whatever challenges arise, and they will be better people for it.





Wednesday, September 4, 2013

Two Year Appointment

Belalu's stats from her two-year well visit. We'll be seeing Dr. Pauli in Madison next month.

Weight: 24lbs 4 oz; 20% on the AH chart
Height: 2' 6"; less than 3% on the AH chart
Head circumference: 20"; over 97% on the AH chart


Thursday, August 29, 2013

Two Years!

Recently Belalu turned two. This amazing girl of mine just gets sweeter and sweeter. She hasn't lost any of her determination, though. People who meet her, many of whom don't know her as anything other than an average toddler, tell me "you're not going to have to worry about this one." And those who do know that she is extra special, they reassure me that, well, we won't have to worry about her. I should clarify that I'm not going around telling people that I'm worried about her or anything- they just watch her for a while and then make their pronouncement without prompting.

This girl just projects confidence in herself and her capabilities. She figures things out. She gets where she wants to go, one way or another.

Her annual well visit was uneventful, as we hope they will be. She is progressing along her own curves. We celebrated her day as a family. The boys made her cupcakes while she napped, and then we ate them after dinner on the river.


It's been a busy, fun summer, so I've been absent on the web. But I didn't want to miss this occasion. Happy Birthday, sweet, gorgeous girl.

Friday, July 19, 2013

CSA 2013, Weeks Two and Three

My parents were visiting last week and then my computer crashed, so I was unable to report on weeks two and three of the CSA until now.

Week Two
For week two's box we got: Lovelock Head Lettuce, Spinach, Pea Vines, Radishes, Garlic Scapes, and Rainbow Swiss Chard. The lettuce, pea shoots, and radishes were used in salads with MB's* Asian salad dressing. This dressing is so good, I actually crave it! It made a nice complement to the sweet potato soup I made, also from MB* that also had some Asian food undertones (coconut milk, ginger, mint, cilantro). The potatoes came from the farmer's market, not the CSA.

The spinach went in a Spinach, feta and walnut lasagna, again, from MB*. I made this lasagna together with a more traditional pork/red sauce lasagna, thinking that I'd be the only one eating the veggie one. However, everyone had a little of both and really liked how they complemented each other.

The garlic scapes went together with last week's portion to make a pesto. MB* once again provided the recipe, where you combine scapes with almonds, parmesan cheese, olive oil, salt, and pepper. It is amazing. We've been spreading it on bread and also put it on some grilled chicken.

The chard I sauteed with garlic, cranberries, and sunflower seeds (yes, from MB*) like the week before, and my mom, who'd never had chard before, said she liked the combination of bitter, sweet, and crunchy.

Week Three
In week three's box we got: Garlic Scapes, Green Towers Romaine Lettuce, Lovelock Lettuce, Red Russian Kale, Pea Shoots

I immediately made another batch of the scape pesto to freeze. This stuff is soooooo good!

The lettuces and shoots went into salads. Honestly, the kale is still waiting to be used, but will be consumed tonight in the same Smitten Kitchen recipe as Week 1.

I kind of went crazy at the farmer's market last Saturday. There was finally tons of produce to be had (the season is so late this year). I bought tomatoes and basil to mix with mozzarella for Caprese salads; two baskets of snap peas, because Belalu and I ate one basket before even leaving the market; green beans; mint and cilantro; and 2 pounds of shelling peas. From the two kinds of peas and the mint I made a yummy cold mint pea soup. The basic inspiration was from MB* but I made some substitutions with ingredients I already had on hand. I had no lemons, but did have limes, so used lime juice instead and I had some coconut milk in the fridge from the other soup and used that instead of cream. It came out great, and is super refreshing for these scorching days we're in.

*Minnesota's Bounty: The Farmer's Market Cookbook by Beth Dooley


Tuesday, July 16, 2013

Our Story: The First NIne Months

After ten days in the NICU, Belalu had stabilized enough for us to finally go home. She had been put on Phenobarbital when they first realized she was having seizures, but still had two more after that, so they changed her to Keppra. That seemed to work. The Dr. wanted her to be seizure-free for three or four days before we could be released, so those additional seizures were devastating for more than one reason. Of course it was horrifying to see her turning blue and nerve wracking to hear the machines she was hooked up to suddenly go off in their shrill, heart-stopping tone; but it also meant that our countdown clock was re-started, and our family had to face more days apart while our day-to-day normality was put on hold for what seemed like an indefinite period of time.

It did indeed end, however, and we gladly left the hospital and the NICU to head home and start our "new normal." The medication made Belalu sleepy, so I was grateful that at least all that juggling of newborn and toddler was easier at first than I had anticipated. I should clarify that it was the first drug that really knocked her out- in the NICU she slept almost all the time, and even when awake, was pretty limp. I know newborns sleep a lot, but this was extreme. The nurses would try to wake her up for a feeding, and had a hard time of it. She would eat and immediately fall back asleep. Nevertheless, thankfully, we had no problems nursing and she never had to take supplements. It took some time to get the Pheno out of her system, and while the Keppra was better, she still was a pretty sleepy baby for the first three months. I was very concerned about how this medicine was affecting her brain development, but got little info from the Dr.'s, who assured me that it wouldn't. I have to admit I was not convinced. While in the NICU, we'd have these team meetings with all the Dr's studying our case, and when I had asked about the effects of the medicine on her development, the neurologist told me that it wouldn't have a negative impact. "Pheno is an imperfect drug, but it's the one we're most familiar with, so that's why we're using it." I asked him why it was imperfect- what were the side effects, and he didn't really give me an answer. Once we switched to Keppra, he told me that it was the Pheno that was making her so sleepy and limp. I still don't know why he didn't tell me that when I asked, and it made me distrust his explanations a bit. So, I continued to worry about her brain development in the subsequent months, especially since we had been told that there was a chance that the seizure-induced apnea that had caused her to turn blue could have affected her brain, too.

With E I was fairly laid-back about his development. I read up on the month-to-month milestones, and loved watching him reach them, but didn't worry if he was ever behind in some, because I knew he had his individual growth pattern and trusted that he would reach them eventually, which he did. With Belalu, though, we were constantly vigilant about her development, still not sure if the seizures were behind us or if they were indicative of something more serious that was still to be revealed. At two months, the neurologist determined that she could be weaned off Keppra. More anxiety as we waited to see if the seizures would return and relief when it appeared they wouldn't. At four months, we joyously kicked the infernal monitor out of our house for good. Its constant false alarms made us so indifferent to them that if any real emergency happened, I wondered if we'd even notice right away. I was convinced that Belalu was a normal, healthy little girl and the neonatal seizures were just some bizarre occurrence that would be left to marvel at when she graduated college and went on to do whatever amazing thing she was destined to do in the world.

Then, we watched a video of Essie at her age sitting in the bouncy chair, effortlessly reaching for the little velcro toy hanging down in front of him. And we realized that Belalu was unable to do it. At first I thought it was cognitive, but then J understood that it was physical. She couldn't reach out her arms at all. They were almost always bent at the elbows and tucked into her body. I immediately called the birth-to-three program to set up an evaluation. Since she was in the NICU she automatically qualified, but I hadn't believed it necessary at first. They confirmed that this was not normal and were concerned that she held her hands in fists all the time, too. We began to work on encouraging her to stretch out her arms to reach for things and to open her hands more.

By six months, she had made great progress, although her arms could not straighten out all the way. The PT thought that she was holding her arms in like that to help stabilize her balance to compensate for the low tone in her abdomen. At Belalu's well visit the pediatrician noted some concern that her growth seemed to have slowed down. She said that if it didn't pick up by the next appointment, we'd be referred to a specialist. I asked what it could indicate, and she said it could be a problem with her endocrine system. I didn't give it a lot of consideration, however, because I was convinced that everything was fine and in my ignorance, this didn't sound like it was related to the seizures or her arms.

Three more months went by, and all was well as far as I was concerned. And then we had the nine-month well check. I'll leave that one for it's own post.

Monday, July 8, 2013

Riding Bikes

A week after he turned four, E started riding his bike. We then lowered the balance bike for Belalu, and while I thought that it was too tall for her, we actually could lower it a little more. However, she still needs help because her tippie toes just reach the ground, so when she really wants to move, she goes back to the Tiny Trike. All of our bikes have been getting a lot of use this summer.




Saturday, July 6, 2013

The Year of the House

I haven't been talking about it here lately, but The Year of the House is still in full swing. With the gorgeous weather, I've mostly focused on the outside, but there has been more clearing away of things to charity and overall organization happening inside, too.
We spiffed up the "clubhouse" for the kids. It's a place to store E's gardening tools and a favorite afternoon reading spot.

 The stove was just a temporary additional - no worries, we don't actually use it in there!
I call this the "Secret Garden bench". Did you ever read that book? It was one of my favorites growing up.

I've also planted a ton of plants, shrubs, and flowers as well as some seeds for the garden.
Rhubarb, chives, and radishes braving the cool, wet spring!

Friday, July 5, 2013

CSA 2013, Week One

We go to the local Farmer's Market most Saturdays, and while occasionally I try to branch out and try something new, usually I stick with the foods I'm familiar with. I love vegetables and eat/prepare a good lot of them, but there are still some that I've never known what to do with. Having two little ones has made it hard to experiment in the kitchen, but now that Belalu is at the point of being able to play with her brother and/or entertain herself when I'm in the kitchen, I've gotten adventurous again.

We joined a CSA this year and receive a half share of produce every week. CSA stands for Community Supported Agriculture. The members pay for their share up front and then pick up a box of goodies once a week throughout the growing season. In our area, that's about 18-20 weeks long. Lousy, wet weather has postponed the start of the summer harvest this year, so our CSA started just last week. I'm excited about it because I will receive veggies I've never tried; we are supporting a local farm; it's all organic and locally produced; and I will have a better sense of the natural growing cycle of veggies. I've been trying to eat seasonally, but to my embarrassment, I don't even know when many fruits and veggies are in season! We are so used to buying whatever we want when we want it, that I've lost all sense of nature's true cycles. Getting fruits and veggies in season means that they are more flavorful, more nutritious (they don't have to travel around the world to get to me), and more sustainable. I also love knowing who is growing my veggies- I see them every week at the farmer's market and can ask for suggestions about what to do with the produce they grow for us. They also have a blog where they share what's going on at the farm that week, and provide recipes and suggestions for preparation for the veggies they harvest.

I've been relying on a couple of cookbooks to help me with recipe ideas, too. In May I attended a dinner at the local bookstore that featured the book Minnesota's Bounty (MB). The author, Beth Dooley, and photographer, Mette Nielsen, were in attendance, and I got to sit across from them at the dinner table. I love this book, because Beth wrote it as a field guide to the farmer's market. It is arranged by item, so if I want to know what to do with pea shoots, I go to the veggie section, "Peas," and there I can see what they look like, when they are in season, how to store them, and several ideas on how to prepare them. She has at least a couple of super-easy ideas, not even recipes really, for each item and then a couple of recipes that involve more ingredients. For example, for peas, there's a simple pea and mint saute suggestion, and then a snap pea and radish salad recipe, among other things. As you can see, the other ingredients are seasonally in tune with the featured veggie, so they are likely to be found at the market at the same time. I also consult Vegetable Harvest (VH) quite a bit, though it's based on French markets, so doesn't always coincide with what we have here.

This spring/summer in my culinary adventures I have discovered green garlic, garlic scapes, ramps, and pea shoots. I also finally found a way to eat kale (this is huge). All super delicious. I can't believe I've never had all these spring treats in my life before! (The ramps and the green garlic I found at the local Co-op, the others are from the CSA). I'm going to keep track of what we get each week and which recipes I really like so I have a record for next year. So, after that long introduction, here's what veggies are happening in my kitchen these days.

For Week One, we received Red Russian kale, arugula, spinach, garlic scapes, oregano, mint, chives, radishes. I used everything within the week except the scapes and the oregano. MB has a recipe for sauted scapes and I was hoping I would get more this week to have plenty to saute. I did, so I'll be trying that out and will post the results in Week Two's round-up. The oregano I'm not sure yet what I'll do with it. It's holding up so far in the fridge, but I need to figure out what to do with it soon. I've only used it as a dry herb before.

Arugula is my favorite green and can only be found once in a while in the stores here. I've been growing it in my garden this year, and it's been doing well. The batch from the CSA got mixed with the kale. Honestly, I've tried a few times to like kale and I just couldn't unless it was in a stew or soup. Smoothies, kale chips, saute... I just didn't care for it. So, when I decided to try it raw in a salad, I threw my favorite green in with my least favorite and magic happened. I used Smitten Kitchen's recipe for kale salad with honey mustard dressing, goat cheese, craisins, and pecans, and we loved it.  Score!

For the spinach, chives, and radishes I used a recipe from VH. It called for couscous, but I was out, so I subbed bulgar wheat instead. The chives went in a creamy chive dressing that mixed in with the bulgar and spinach that had been shredded and then I threw in some chopped radishes- I forget if that was part of the recipe or I just added them for interest.

The mint was used for mojitos, my favorite drink, and perfect for summer.





Wednesday, June 26, 2013

Our Story: Ten Days in the NICU

That day after Belalu was born and had been sent to the other hospital began a week and a half of surreality (I think I'm making that word up) that I wouldn't have been able to anticipate. I was alone in the hospital room in town, while J and our newborn daughter were in another state. He was essentially all alone, too, as he spent the day helplessly watching as they subjected her to test after test. She continued to have blue episodes, and we were very concerned about how the lack of oxygen would affect her cognitive development. Honestly, I don't now remember all the different tests she underwent, but I know they gave her an MRI and a CT scan. It was a Friday, and by the end of the day they had some additional testing to do, but since it was now the weekend, we would not get any further answers until Monday. So, we had to accept that we would continue to be confused and scared and not have any answers to allay our fears for at least two more days. We felt helpless.

My hospital discharged me as soon as possible, and by Saturday afternoon I was with my baby again. I tried to spend as much time in the NICU as possible, but the nurses would constantly urge me back to my own room as I fell asleep with her in my arms. J was back home with Juju and Essie, so it was a quiet, lonely room, though I was so grateful for the Children's Miracle Network that allowed me to stay at the hospital for free. It was so hard, though, being in the neonatal wing, hearing all those other families loving on and enjoying their newborns and then going home with them as I continued to wait until the day we could leave with her. I believed that my newborn needed to be touching one of us almost constantly- E had slept with us from the very beginning, even while still in the hospital, so having a long hall and many walls between us was a separation that wore on me physically. The few times I left the hospital to get some fresh air and a change of scenery, I think I had something resembling a mild panic attack. I would have trouble breathing, my pulse would race, and I just felt anxious until I was back holding her again. At the same time, I was experiencing my first nights without Essie. I had never been away from him overnight before. Those four days I was worried about when I thought all I'd have to deal with was a c-section seemed like nothing compared to 10 nights in another state.

I'm not sure if it was the pain medication I was taking from the operation or just plain shock, but I felt very little emotion during the NICU days. That first day, I remember looking down at my tiny little girl, who had had a healthy, uneventful pregnancy and had been born on her due date and just wondering- what were we doing here? It was a surreal place. There were no windows and the lights were always very dim. Most of the time, the only sounds were the beeping of machines or the low talk of the nurses to each other. It felt completely removed from the rest of the world. Suddenly, we were in a new category of parents. Our daughter was most likely going to have special needs. We both come from families with very little health concerns- I always took my health for granted. I had stepped foot in a hospital less than five times in my entire life- and almost all of those times were related to visiting people who had given birth. And yet, here we were. I couldn't wrap my head around it.

They finally figured out that the blue episodes were seizures, but this lent little knowledge to her state. We were just going to have to wait and see if there would be cognitive or physical delays; if the seizures would appear throughout her life or if she would outgrow them; if she had a condition with a name or would have no further health concerns. There was one Dr. in particular who was determined to give us an answer as to why this was happening, but at the same time told us that the best news would really be that there was no answer to the seizures, because that meant she might just outgrow them without further complications. Ultimately, that's how we left the hospital: without answers. They had figured out a medication that seemed to stop the seizures (Keppra), but that left her sleeping almost constantly. She was to be hooked up to a monitor in case her breath stopped or her heart slowed, an infernal machine that would go off throughout the night because she liked to sleep on her stomach and this made her breathing shallower. We were trained in CPR in case a blue episode came and didn't go away, and I was petrified she would die in my arms, because I still had a hard time recognizing the episodes when they did come.

Interestingly, that first night I was reunited with her she was lying asleep in my arms and I was just watching her. J and I had been lovingly joking to each other about her short legs since the ultrasound, and her arms and legs did seem to be disproportionately shorter than her torso, with its hugely distended belly. Suddenly, I thought to myself, "maybe she's going to be a dwarf." "Maybe that's all it is." I didn't realize then how many health problems people with dwarfism can have, so at that moment it would have been such a relief to me to know it was dwarfism and not a more dramatic physical disability like CP, which had been proposed at one point as a possibility. When I asked the medical team in the morning if Belalu could have dwarfism, though, they resoundingly told me, no, it wasn't that. This strong negation of my guess then obviously made her diagnosis nine months later so much harder to grasp.


Wednesday, June 19, 2013

A Stool for Belalu

Our daycare/preschool center is affiliated with the university where we teach, so in addition to each classroom teacher, each room also has a number of university students who work there as well as other students who come in to get classroom experience while taking early childhood courses. It's a great program and has been named one of the best in the state. We've been really happy there, for the most part.

I mentioned yesterday that B's teacher told us she had ordered a stool for her and we had been taken aback, because it seemed like it was too early for those kind of adaptations. I've been thinking about it and realized that what most bothered me about it was her being singled out already, before it seemed necessary. I resolved to talk to her teacher about it tomorrow, when she went back to school.

Tonight, however, was date night, and we're very lucky that one of the center teachers lives two blocks from us. She's still a student, but her maturity level far exceeds her age. She's studying Special Education and hopes to work in our district when she graduates. Her mother was Belalu's classroom teacher until she (B) moved into the toddler room a couple of weeks ago. Anyway, she watched the kids tonight and before she left I asked her if she knew the full story about the stool, because I had some concerns.

She told me she was glad I had asked, because she'd been meaning to bring it up these past couple of days. She then explained that she was the one who had initiated the stool being ordered. There are two sinks in their room; one they all can reach with help of a small stool, though she said Belalu has to reach in more than the other kids, and another average-height one that is where the empty cups end up after meals- they have to toss them in because none can reach to place them in. I asked if only Belalu would be using the stool, and she told me that in that room, it was going to be for all of them. However, it would then move up the rooms with her, as needed. These had been my two primary concerns. She also explained that she had been very intentional when picking it out for her, so that it would have railings that she could use. She assured me that she understood how important it was that Belalu not be singled out or treated differently. In fact, she brought that up before I had a chance to ask. I know a day will come when she'll need some modifications or adaptations made for her, but I'm glad it's not here yet, and I'm so relieved to know she has an advocate keeping an eye on her when we can't be there.


Tuesday, June 18, 2013

22 Months: An update

Belalu is quite the toddler these days. She will emphatically point her finger at you and say "no!" in a very firm voice. She oftentimes insists on walking up and down the stairs by herself. When she can, she'll hold a railing, but if not, she'll use the wall and then swing her leg around till it's on the next step. Going down, she carefully will walk or scoot on her butt, depending on how tired she is and how high the rise is between stairs. She sometimes will pull her brother's hair or hit him when he won't share with her, but then immediately rubs the same spot and gives him kisses and hugs.  Getting her in the car seat these days is often a physical struggle, and then she has to be removed screaming from the same seat when we reach our destination. However, it's not all testing limits and gauging power. When she hasn't seen me in a couple of hours, I get a very high-pitched screech of pleasure and then an enthusiastic "mama!!!" She talks a lot, and prefers to sit and look at a book by herself rather than be read to, though that is being requested more and more, too, especially if it involves Elmo. This amazes me, because she has no interest in watching Sesame St, and has maybe seen three clips of it in her life, and yet adores all the books and toys we have that feature him. She loves to sweep and help wipe up spills (in fact I think she often creates those spills just so she can wipe them up).


When I try to sing to her, she usually puts her hands over the ears or says repeatedly until I stop, "no, no, no!" When her brother sings to her, she claps and says "yay!!" They both are working on sharing, as her interest in what he's doing grows. E has learned to ride a big boy bike now, so we lowered his balance bike hoping it would be low enough for Belalu, and I really thought it would be, but was very disappointed to discover that it's not. She's really interested in bikes, and every Tues when we leave the Y, there's a women's bike group gathering for a ride at that time. Belalu just stands there and looks at all of them. I have to pick her up and carry her away or she'd never leave.

The biggest milestone for me lately is hard to discern below, but is the best picture I currently have on my computer of her ..... pigtails!!! Her hair is finally long enough to put up! I'm trying to get her to let me pin her hair back with a barrette in the front, since she sweats so easily in the heat, and the best strategy so far seems to be putting in about five in a close row and hoping she tires of pulling them out before she reaches the last one or two. I've never been able to keep a headband on her for more than three seconds.


She's now in the toddler room at daycare, and the teacher told J yesterday that she's going to order Belalu a higher stool for the sink. I guess she wanted to put her cup in the sink by herself and couldn't do it, so another kid helped. But the way she described it, B wanted to throw it into the sink and couldn't, so we're wondering if it was more about her coordination than her height. I need to talk to the teacher myself and ask more questions for clarification. Obviously, we are happy she is being sensitive to B's needs, but we're wondering if it's really necessary right now for her to have a different apparatus already.

Besides bikes and bubbles, Belalu's favorite thing ever right now is babies. She is mad about babies. Whenever she sees one when we're out and about, she shrieks "BABY!!!!!" and runs over to pat its head or give it kisses or stick her finger in its eye or nose or mouth. Given her affinity for them, I thought she'd like the documentary "Babies," which E had seen and liked at about her age. Ummmmm, yeah.... she might be a bit obsessed. Every time she sees my computer now, she shrieks "babies!!!!" and runs over to it, repeating the word until I put it on or dissolving into a fit of tears if I don't. She won't watch cartoons, but she'll watch this for a good 30-45 minutes. One day I had taken it back to the library and she was insisting on watching it, so J found a National Geographic documentary on Netflix that she happily watched most of. I was happy she didn't like watching tv, but with her toddler moods, it has been nice to have a little peace and quiet while I prepare dinner or to be able to sit and knit while watching it with her.

So, that's our soon-to-be two year old lately. She is adored by us all, and we love witnessing her develop, even as she continues to be the sweet, independent, determined girl she's always been, just in new ways.

Sunday, June 9, 2013

Out Story: Belalu is Born

We had the EV (external version) scheduled on her due date, August 18th at 10 a.m. In the middle of the night before, I had a lot of contractions, but didn't think too much of it. When we got up, E asked if we could take a walk around the block, so we did- literally one block. My contractions increased during the walk, to the point where I had to hold on to J's arm by the end. We got back home to get E ready for daycare and us the hospital, but I quickly realized that I was in labor and we needed to go right then. We dropped him off, and when we got to the hospital I was over 8 cm dilated.

I knew Belalu was still breech, because together with the contractions, I could feel her kicking me- she was lying diagonally. They gave me a shot to stop the contractions and the Dr. came in to tell me we'd be going right into surgery, since they couldn't do the EV if I was in labor. By that point, I had resigned myself to letting go of all expectations for her birth. My low point had been earlier in the week, and at this point, I just wanted to meet her and make sure she was healthy. So when the local anesthesia didn't work, and they told me they would need to give me a general one, I just surrendered and said, "fine." I still remember lying there in the OR with all those people around me, saying good-bye to J and thinking, "I am living exactly what I was petrified of." I wouldn't even be conscious when she was born. My sister, husband, and sons would meet Belalu before me. It was the complete opposite of E's birth. But as I was thinking all this, I was calm because I had surrendered all control at that point. It was what it was. As long as she was healthy, it would be fine.

Once I finally was able to hold her, I was happy to see that she nursed right away. Her apgar score was not great at first, there had been a lot of meconium, the nurse told me. She had been born at 11:40 a.m. and was 7lbs 9oz and 20 in long. Soon after we had met, Belalu was lying in my arms and J noticed that she was turning bluish/purple. I didn't think too much of it, because babies are so funny looking and weird colored at first anyway. But it happened a couple more times that afternoon, and he was really worried. The nurses and mid-wife, however, dismissed any concerns.

That night, everyone had gone home and I was lying in bed, dosing, with her in my arms. A nurse came in and told me the Dr.-on-call wanted to do the newborn exam and it wouldn't be too long. I dosed off and woke up an hour later. It was about 4 a.m. Belalu still wasn't there. I called the nurse and asked where my baby was. She told me the Dr. was still observing her. I dosed again, woke up, and asked once more why they hadn't brought her back. She told me that the Dr. would be in soon. When she came in, the Dr. told me that she had detected a heart murmur and Belalu had turned blue again. They were going to send her to a hospital across the river in another state, half an hour away. They had called an ambulance to take her, but because of my surgery I had to stay where I was.

I called J at 6 a.m. and told him what was happening. When the Dr. had been telling me all this, I was numb and completely calm. When I talked to J, my voice broke. Having to say it out loud was much harder than just absorbing the info as they told it to me. He came right over, and they wheeled our baby into the room so we could say good-bye. She was so tiny in that huge incubator. She just looked so alone, and I reached in through one of the holes to grasp her little hand and give it a squeeze. J followed behind the ambulance to spend the day with her as she underwent a battery of tests. I was left back at the hospital, alone.

Wednesday, May 29, 2013

Our Story: The final days of pregnacy

It had been so exhausting traveling alone with a toddler three weeks out from my due date. I got home that night and collapsed into my bed. As I lay there, I could feel her flip inside me. I had an appointment scheduled with the midwife the next day, since she hadn't seen me for a month, and she confirmed that the baby was breech. I panicked.

I did not want a c-section. I wanted a completely natural birth. I had had such a wonderful experience with E, and I had been hoping to have an equally great experience with Belalu. Plus, I had E, who had been my constant companion all summer and who I was already worried was going to feel slighted when the new baby came along. He had been super clingy in the past few months and I couldn't imagine that having a baby would make that better. Not to mention, having to stay at the hospital for four days of recovery and then not being able to lift him.... I did not want, could not have, a c-section.

I went to work trying to get her to turn. I had read that sometimes babies flip for a reason, so I didn't want to do anything invasive in case she had the cord around her neck or something equally dangerous. For example, I was offered some homeopathic pills that I decided not to take (and I was forever relieved that I had made that choice, since I had so many what-ifs on my list while we were in the NICU, and this was one less thing to wonder about). I did do handstands in the pool and supported shoulder stands at home. I had done hypnobirthing with E and hadn't really trained with it as much this time, but I did order the CD for flipping the baby. I drove and hour and a half to see a chiropractor specializing in pregnant women. I did acupuncture and moxibustion. I did everything I could to get her to flip back, but nothing worked. The last option was an external version (where the Dr. physically turns the baby from the outside), but it could induce labor. J was due home five days before my due date. I really wanted him to be there for the birth, so we decided to schedule the EV on my due date. I was scheduled to go in at 10 am, and was told to be prepared to have a c-section that day if the EV didn't work.

In all these days leading up to my due date, I felt helpless. I saw a c-section looming and was petrified. I didn't want surgery. On the other hand, all this time I spent trying to flip the baby was time I could have been spending with E enjoying our summer together. This wasn't how it was supposed to be. First, this baby comes out of nowhere and now I'm going to get cut open because of her? How had I gotten to this point? What was happening??!?!? (I'm sure the pregnancy hormones and not having my husband there didn't help my mental state ;) I was angry, I was scared, I was frustrated. I felt completely and utterly helpless. It was my lowest point- those finals days before my due date. Little did I know then, it was all just making me stronger for what was to come.

Monday, May 27, 2013

Our Story: The Ultrasound and the rest of pregnancy

Since I had no idea how far along I was, they scheduled an ultrasound for my first appointment. I was already into my second trimester, so not only did I find out I was pregnant that week, but that I was having a girl! It was so surreal- we had been hoping for a girl, but even that news was a little muted by the overall shock of me being pregnant and having an important job interview two days later. I had essentially skipped the whole first trimester, at least in terms of the waiting game. Mid-August didn't seem all that far away.

During the ultrasound, the technician made a comment about Belalu's legs being short. No one took it any further than that. And when I mentioned this detail to Dr. Pauli last fall, he told me that it would have been too soon to detect hypo based on leg length. But the fact remains, her legs were shorter than average from the beginning. Incidentally, we didn't do any testing. It was too late for many of them, but I wouldn't have done them anyway, just as I hadn't with Essie. I was very upset that I hadn't been taking prenatal vitamins and had been taking birth control, but the nurses and midwife assured me that the baby was healthy. Luckily, I don't drink much alcohol anyway, so while I had had some while unknowingly being pregnant, it would have been a drink here and there. Nevertheless, all these factors raced around and around in my head when we got Belalu's diagnosis and the nagging question is still there: did I do something to cause this condition?- Even though I've been assured by many Dr.'s that isn't the case, I still wonder, how much do they really know about hypo and the factors that cause it?

My pregnancy was pretty uneventful. I had had gestational diabetes with my first pregnancy, but strangely enough did not have it with the second. I did travel to Argentina when I was 7 months pregnant. It was a grueling trip for work and especially hard while bringing a nursing toddler along. Later that summer J went to Spain to visit his family while I went to Maine to visit mine. He didn't want me home alone with E for a month, so I flew back home with Essie by myself three weeks before my due date. Again, more "what-if" factors for us to mull over while in the NICU.

Friday, May 24, 2013

Our Story: Discovering I was pregnant

I had wanted to have kids close in age, but 2011 was going to be a very busy year. We had three overseas trips planned and a trip to the East coast. I was going to be interviewing for a tenure-track position at the university where I had been working on a contract basis since 2005. If things had gone according to the first plan, my second child would have been born at the beginning of Summer 2011, but with the busy year ahead, the second plan was to have him/her the beginning of Summer 2012.

In December 2011, E was still nursing, but it suddenly got very uncomfortable for me. I was nauseous, but not to the point of illness. I just didn't have much of an appetite. My lower back had begun to ache. I was feeling sluggish, but we had just moved E to his own room in a crib and he wasn't taking it well, so none of us was getting much sleep. It was winter, and the cold didn't do much for my exercise motivation. I figured my back hurt because I wasn't getting enough exercise, and I also blamed the lack of exercise on my lack of appetite.

Three months later, we go to Puerto Rico during spring break. I haul out the summer clothes, and I'm dismayed to discover that they are snug. If I overindulge, my stomach is the first place I show it. I was still exhausted, but that was pretty much a common state for me those days with an active toddler, a full-time job, and a dissertation to defend. Then I almost fainted, twice. Suddenly, (yes, really, it took that long) it occurred to us that I could be pregnant. J said it first. I remember exactly where we were in Ponce, PR. I had just left the Music Museum after nearly fainting. It was hot, there was no air conditioning, I could have been dehydrated... I excused it away, but J pointed out that my back was bothering me, my stomach was looking really round, and I was constantly needing to pee. The possibility began to enter my thoughts slightly, but it was still too terrifying to acknowledge.

The first day after returning home, while J was still at work, I took out the other test from the box I had used with E and gave it a try. Positive. I couldn't believe it. I couldn't get ahold of J, who was in a meeting, so I called my sister. She was excited- I was petrified. This wasn't the plan. It couldn't happen this year. I had too much going on. I was on the mini pill and nursing. I couldn't be pregnant. I had an interview later that week for the position I had been working towards for years. I couldn't start a new job by going on maternity leave.

I called my midwife's office and explained that I thought I was pregnant, but that maybe the test had expired and I should get a new one. She asked me what made me decide to take the test, and when I told her all the "signs," she just laughed and told me I was definitely pregnant. We had to schedule an appointment right away, because I didn't know how far along I was. Though December's discomfort did enter my mind, I couldn't believe I would have made it three months without realizing I was pregnant.

In spite of all my logistical concerns, I was actually pretty happy that I was pregnant, since I had wanted my kids to be close in age. Work pressures had forced me to postpone my original plan, but apparently someone else had their own plan, and she wasn't waiting for me to feel "ready" for her. She was coming on her terms. (I have a feeling this is going to be a life-long theme with this girl ;)

Wednesday, May 22, 2013

Our Story: Introduction

Belalu, May 2012
Around this time a year ago, we were in limbo. We were waiting for an appointment with the geneticist to see if she would diagnose Belalu with a form of dwarfism.  J was pouring over webpage after webpage, trying to determine if she had dwarfism, and if so, what kind. I was trying to stay neutral, waiting to see what a Dr. said before reacting to something that may not have even been true. He would come to me several times a day with medical terminology I had never heard before and couldn't wrap my head around "lordosis" "foramen magnum" "skeletal dysplasia"... My head spun with it all. Then there was the diagnosis. And I began writing here, to sort out my thoughts. However, I never did get around to talking about the year and a half before that: my pregnancy and her first months. I kept meaning to, but just never did. So, now, on the one-year anniversary of learning that Belalu has hydrochondroplasia, I want to do just that. I'll post by stages. I remember first entering the LP world and soaking up every bit of info I could find that could give me some insight into my daughter's condition, so I'm hoping that parents in a similar situation may find this helpful or interesting in some way.

Saturday, May 18, 2013

Noticed

Today Belalu's size finally hit me. Her friends are all different ages and sizes, so I never really saw before how small she is for her age. Some friends of ours have a daughter who just turned one recently. They have an older daughter, and when Belalu was born, they gave us a bunch of clothes for her to wear, and then I was going to pass them back for the second daughter after she was born. Now, the second daughter is passing on her clothes to Belalu. They are almost a year apart and are the same size or in the case of pants, Belalu is far smaller than the other child. Most of her pants are size 6-12 right now, but she also still wears some 6 or 9 month ones, and those are the ones that best fit her leg length.   
As an introvert, I like to observe. I don't like to draw attention to myself, especially if I'm out in public or in a group setting. I get very nervous and ineloquent when everyone listens to something I'm saying and stumble around saying whatever comes into my head. I then spend the rest of the day/night rewording in my head everything I said. So, as it becomes more and more apparent to the random observer that Belalu is different, the more nervous I get about confrontations, difficult conversations, a litany of questions; when all I want is for me and my family to go about our business unnoticed. I know I will need to set an example for my children, and I'm really afraid that I'll think of the perfect response or thing to say... five hours after the fact. I don't know how to prepare myself for what's coming, because I don't know what it will be. And it'll likely be when I least expect it. I try to tell myself that humor and equanimity are the best traits to cultivate. So, I'm working on starting there.



Thursday, May 16, 2013

Speed Demon

This girl has no fear.

We were at another family's house this evening for dinner, and Belalu found a tricycle in the garage. Her feet could almost reach the pedals, but she had to strain her whole body forward to get there, which would cause the bike to tip over. She didn't care. She kept climbing back on, falling over, getting up, and doing it all over again. No tears, no frustration, just determination and tenacity.

She has also discovered the joy of riding her brother's balance bike. She makes "brrrrmmm, brrrmmm" noises the whole time. He'll be getting a pedal bike for his birthday, which means we'll be able to lower the seat on this one once he figures out the other. I'm not sure it will be low enough for her to reach, but it'll be close.

Look at that face. No fear, I tell you.

Thursday, May 9, 2013

Hey there

Making it through the week. Balancing final exams, grading, gorgeous weather, some fun social nights, and of course, the kiddos. So happy spring finally decided to make an appearance!

Saturday, May 4, 2013

Pssst...

Good morning! I'm in the middle of a glorious, near-impossible feat. A quiet cup of tea and some Internet surfing for inspiring spring sewing projects. Everyone else is asleep. This never happens. So, while I wait for the snow to melt and savor this rare treat, I wish you a happy, warm spring weekend.

(In her book Elevate the Everyday, Tracey Clark reminds us mothers to not forget ourselves as we document our kids' lives. I'm very guilty of getting lost behind the camera, so I've made a pact with myself to look for ways to incorporate my presence more in our day-to-day photos. )

Thursday, May 2, 2013

Happy May!

This is a picture from exactly one year ago today. Hard to believe, since we woke up to snow today. E said "Mama, it's not supposed to be snowing. It's Spring." Don't I know it. Classes were canceled at the local school, but not at the university. It's my last day of teaching this semester. So, very soon I'll be posting Belalu's stats from her 18 month check ups. Give me a day or two.

I did take advantage of the beautiful weekend, though, to get a jump-start on my lawn and garden, so I'm feeling better than my last post.

Thursday, April 25, 2013

Ready for Spring!

I came home from work one day a couple of weeks ago  to find E had dressed himself to play outside.  The ubiquitous ties have since been replaced with a Superman cape.
Although all this snow is now gone, it's been below 40 degrees F most of the month. This weekend is promising to be gorgeous, and everyone at this point just really needs that to happen.

We're finishing out the semester, so I've not had a lot of free time or energy, but there is a light at the end of the tunnel. Though J is gearing up for a trip to Spain soon, and I'll be teaching a May-term course, so the excitement will continue for a little while longer, I suppose, albeit in a different way.

My house plans have not been neglected, however. I have been doing the best I can to keep up the daily maintenance and have been relentlessly decluttering. Last week I gave E's room a thorough cleaning, and it just feels so good to have nothing extraneous in there. In addition, there are three garbage bags of clothes by the front door to donate tomorrow and several boxes more ready to go to the consignment shop on Friday.

This was my hat when I was a baby. I love that Belalu wants to wear it.
I've been feeling stressed and overwhelmed with work stuff, and clutter just adds to my stress, but so does the idea of having to organize it and get rid of it. My personality doesn't really know what it wants: on the one hand, I hate clutter and stuff just laying around, but on the other, I am very sentimental and don't want to get rid of anything anyone ever gave me. All my work this week has made me I feel freer, and I really want to keep it up. When I have time to start on some bigger house projects this summer, I'll be more inspired and motivated to do them with a house purged of unnecessary stuff.

When I step outside and see all the work my yard needs, though, panic starts to creep back in. And that's when I am grateful for the winter-like spring we're having. I'm just not ready to go there yet, though I will be after next week. We were going to start seeds inside this year, but never got around to it for various reasons, and I'm not letting myself worry about it. All my house projects and plans are to improve my quality of life, not bring more stress and worry to it, so I tell myself this when I start to feel bad about not getting something like that done. There's always next year. Thankfully, we have a several great sources for garden plants in the area, and we'll just go that route this year. I am very excited for our Farmer's Market Saturdays to resume.
Dwarf arrived in the mail last week, though I've been finishing up next month's book club book first. I couldn't resist starting it, however. And I couldn't stop crying while I read it. I think I've read two or three chapters so far, and I couldn't.stop.crying. So, guess I won't be reading this book anywhere but home.

I have some updates on Belalu's latest Dr. appts, but I'll save that for another post very soon. (Hard to believe my baby's 20 months old!)

Hope your spring where you are is bringing you lots of sunshine and warmth.

Thursday, April 11, 2013

Book Review: Little People: Learning to See the World Through My Daughter's Eyes

I've been slowly making my way through this book since last summer. I've really enjoyed it, but it is so close to home I've found myself only being able to read it while in a pensive mood already. It brings up a lot of questions and thoughts that I don't always want to think about right before falling asleep, which is usually when I have time to read for fun.

Dan Kennedy is the father of a girl with achondroplasia. I really appreciate and relate to his thought process as he searches to find meaning in the diagnosis and grapples with where his daughter will fit into society. It was affirming to read someone's perspective with whom I share a lot of the same conclusions, if not a bit unnerving to read about someone going through a similar thought process I was in the middle of undertaking myself.

That was also the most unsatisfying part for me about the book. The parts where he talks about his struggle to understand what Becky's diagnosis will mean for her was almost too familiar. His questions then are my questions now. And of course, since it was written in 2003 and she was on the verge of adolescence, there are no answers. I finished it and wanted a sequel.

I realize my questions about Belalu's interactions with the world will only be answered with time. I also realize that Essie is also likely to have difficulties at some point- I think most people do. (At least in our culture it seems to be a common part of growing up.) But I only find myself worrying about her. What if.... what if.... what if... you can drive yourself crazy with those "what if"s. And then I see her determination, her intelligence, her love of people, and I find myself thinking "This girl is going to be teaching me a whole lot about life and how to take on challenges." Because I really think that's what she's going to do. And I know she's going to be fine, rough patches and all.

I've got two more books regarding dwarfism on my reading list for this summer. This one is next. Anyone want to read it with me and have a virtual book club?

Wednesday, April 10, 2013

Happy Easter and Spring

Both Easter and Spring were welcomed warmly in our house. Something reminded me that I had received a bundt cake pan for Christmas two years ago, and had never used it! So, I took it out and found that it came with a recipe for Lady Bird Johnon's Lemon cake. The lemons seemed spring-y to me, perhaps it was the yellow, and I was soooo glad I made it. Correction, E and I made it. He is my baking partner; he was the one who cracked all ten (!) eggs, dividing the whites and the yolks- the recipe only called for yolks. The cake is so moist and delicious on it's own, it really doesn't need a topping, but I had a ton of blueberries in the freezer, so I made a blueberry sauce to top it with, which wasn't a bad idea at all. I immediately decided that I had found a new spring tradition. This combo will help us welcome in the new season, though I have a feeling we'll be seeing it again sooner rather than later.
I had intended to get a picture of the cake more complete, but it was almost gone before I knew it!
Easter was really low-key this year. We've continued the tradition I grew up with- J hid a bunch of chocolate eggs around the house for E to find, and the kids got Easter baskets, mostly filled with gifts and candy my mom, a-hem, the Easter Bunny, had sent them. I did see these glasses at the $1 section of Target, and couldn't resist. They are for Belalu, but E liked them, too.

























We went out to a really delicious brunch, free mimosas included, and that was our Easter this year. I have lots of visions of decorations and crafts we could do, perhaps dye some eggs, search for plastic eggs outside on the lawn... but it was just too cold and spring still seemed too remote, and the kids are still so young. We were all happy with the day as it was, and we'll see what next year brings.





Saturday, April 6, 2013

Comments with the "m" word

I didn't think it would happen so soon. Both times it took me completely by surprise, as I suppose it always will. Neither was directed towards Belalu, and so were conversations I happened to overhear.  The first time was about two weeks ago. We were at the Y, and it was someone who occasionally watches Belalu in the daycare center there. We were going into the daycare center and she was holding the door open and commented to a guy she knew: "I figured basketball's going on with all you tall guys coming in- I feel like a midget!" Essie had to go the bathroom, so I hustled him in, thinking about how I could approach her about it. But when we came out of the bathroom, she was gone. I thought about it a lot for the next few days. I decided that it was important to talk to her about it, since she could potentially spend time with the kids and may use the word again. Or even use the word in front of her kids and they would think it's ok to use, too. Or what if one or both of the kids had heard and understood? What kind of example would I be setting for them if I just let it go without talking to her about it? So, I wished I had said something. Then, I saw her again a few days later (I don't usually see her so often) and thought about talking to her then, but just didn't. I chickened out.

The second time was last night. E and I went to his first play. It was on campus, and we had a great time. As we were leaving, we passed the student who has dwarfism (I'm guessing it's acon, but I don't actually know), and stopped to talk to her about the show. Then we went further down the hall and E got fascinated with an antibacterial soap dispenser. The hall was pretty much empty, and as I was standing there with him, a group of three guys appeared and one said in a a low voice to the other two, "did you see that midget?" His friend said, "yeah, she's a theater major." They were speaking amongst themselves, she was already gone, but the hall was so quiet I heard them clearly. But again, since it was not a comment I was "supposed" to hear, I didn't say anything. However, my mood immediately plummeted. I was sad the rest of the night. Sad for what I heard them saying about her, and really disappointed at myself for not saying anything.

I'm not a confrontational person. I don't usually talk to people I don't know or intentionally draw attention to myself. If I had been part of the conversation in either case, I would have spoken up immediately. And after the fact, I know I should have said something even though I wasn't part of the conversation, but in the moment I just couldn't get myself to do it. It took me too long to get over the shock of the comment and then formulate how to respond, and by then the moment had passed. In the case of the first comment, though, I actually got a second chance, and I still didn't do anything. I feel like I have let my children down. I'm not setting a good example, and I'm not being Belalu's advocate. I've been unexpectedly thrown into a role that challenges me and my sense of self. Clearly, I have a lot of growing to do.

Thursday, April 4, 2013

In My Kitchen this Winter

 
I swear the only way I've gotten through winter is chai tea (recipe from the Indian cookbook I got for Christmas) and cardamom bread with Trader Joe's fig spread. It's been my weekend treat.


Lots and lots of veggie soups. An old favorite: potato leek
 
A new obsession: roasted garlic and cauliflower with cheddar accompanied by sweet potato fries. 


My other obsession this winter: popcorn. I cannot get enough. I've been enjoying these two recipes a few times a week:

 

As part of my Year of the House project, I've been working on keeping the kitchen more in order. Since the kids were born, I've been good at keeping the house picked up and vacuumed, but there are things that often get overlooked or I just have a hard time finding space in the day to do. I'm working on incorporating these things back into my regular cleaning maintenance. It's been working so far; we'll see if I can keep it up! I've been feeling good since my spring cleaning. When my house is in order, life just seems to flow better. It can't hurt that B is finally sleeping the whole night through, which means I am, too. Oh, and the snow is finally melting outside. 

April so far is promising to be much better than March.






Wednesday, April 3, 2013

FYI: Sale


E modeling his POP jacket near some "builders"
I talked about Polarn O. Pyret a while back and their outstanding, high-quality clothes, especially for outdoors. They have been working really well for Belalu because they have so many adjustable components to them. Their winter gear is currently on sale, and some stuff is going for really cheap. Just an FYI if you're shopping sales for next winter. I'm pretty confident that my kids will get another season out of the stuff I bought them last year.

Monday, April 1, 2013

At the Children's Museum

So, most of these are blurry. Any tips for getting clearer photos from an iphone?






And a video.
video

Wednesday, March 27, 2013

Are you still here, March?

I have disappeared into March. It's been a brutal month, weather-wise. We've just been keeping our heads down trying to work through it. After being sick for three weeks, I finally emerged healthy but stir-crazy. So, lots of playing catch-up with housework, with work-work, etc, but always with the promise of spring break fast approaching. And then...the hotel was booked, everyone's health was good, our conversations filled with talk about where we'd eat and which car/bikes/strollers to take... and then... our destination, which had been 70 degrees the week before ... then... suddenly turned cold and snowy and there was no need to travel 7 hours in the car for cold and snowy, since we already had that right here. And still continue to have it. There is still no green to be seen in these parts.

Even our walking days have been kept to a minimum, because the wind has been frigid. I think I've managed to get out for a walk maybe once a week this month.
 We've had lots of playing inside. Lots of reading and drawing and making and watching, too.
 We've been taking advantage of the indoor gym opportunities to get some exercise and socialize.
The good thing about staying in town for break was that I got a good portion of my spring cleaning done. Walls and baseboards and doors suddenly have new life after a good scrub. Cobwebs are gone. (yes, I really had actual cobwebs lurking in the corners). It's still too chilly to throw open the windows, but the birds have been singing loudly in the trees and in the past couple of days I've noticed the snow making a slow and quiet retreat from the walkways and sidewalks around town. March is almost over, and I'm counting on April to herald in a true and proper spring. I think we deserve it after this winter.