I thought ear infections were bad for language development...

Hattie is on amoxicillin for her first ear infection, though the doc couldn't actually see in her ears, even after scraping out wax :( All the humans in our house are on amoxicillin, unfortunately.

The one upside is that she has learned the appropriate use of the all done sign through the last 10 days of being ill. She HATES having the mucous washed off her face, nose suctioned, etc. So we have been signing "all done!" every time we finish torturing her, and now she does it too! Although, she signs all done 5 seconds into activities she doesn't want to do now. Again, the struggle with teaching your child to communicate is that I have to deal with her communication. What do I do when she says she's all done being in the car seat as I am buckling her in?!?

So at this point she is consistantly and appropriately using the signs for milk, more, all done, dog, hello/bye, no and flashcards. She sometimes seems to be using eat and mommy as well. I feel like our relationship is a lot more in depth now that she is able to really communicate with me. SO MUCH FUN!

Cake free birthday

I have been trying to find an alternative to birthday cakes since Hattie's big day is this week. All the suggestions I can find online are things like cupcakes or cookie cakes. Really, Internet? The whole idea is to avoid putting a ton of sugar in my girl's tiny body.

But today I have finally found some good ones! Hooray! Here they are, in case any other moms are looking for ideas.

1. Edible Arrangements. Fruit or veggie kabobs in a container that looks like a birthday cake.
2. Watermelon cupcakes. Cut out mini cakes of watermelon, serve on a platter. Put a candle in the birthday girl's "cake"!
3. Stack "Cake". Stack up something like books, clothes or boxed toys and decorate, like a diaper cake at a baby shower.
4. Box "Cake". Decorate a box with a lift-off lid. Fill it with little toys and favors for the other guests.
5. Fruit Pizza or Fruit salad
6. Meatloaf "Cake" decorated with ketchup
7. Banana or other fruit bread(I personally love strawberry bread)
8. Fruit cake. Click on the link. Its BEAUTIFUL.
9. Wholesome Baby Foods has some nice recipes if you do want a cake, but want to do it without the sugar, etc.

Snuggly Baby

Hattie is a very snuggly baby. She is by far happier when she is in physical contact with one of her parents. She has developed some really adorable falling asleep habits. We do most of our nursing in the side-lying position, as she is falling asleep. But she is getting to tall to curl up between my chest and folded legs. So lately she has been lying on her side facing me, but propping her legs up on my legs, as though I am a human foot stool. She'll sleep for hours with her legs in the air, at a 70 degree angle.

She is also all about patting me. I pat her back while she falls asleep, and sometimes she reciprocates by patting my chest(thwack! thwack! thwack!) or she hold my hand while I pat her so I'm also waving her arm around. Its very silly, very cute and very Hattie. I am having so much fun with her now that she has her own little habits and preferences.

Too many tests

Its been a rough week-a long visit with the cardiologist on Tuesday and an EEG this morning. Two echocardiagrams, an EKG and a chest x-ray were performed on Tuesday. Dr. P thought she saw a second hole, which would have meant that Hattie has had a much more significant heart defect than we thought. She actually told me that this would mean open heart surgery by the end of the summer. Thankfully, there is no second hole. Hattie still has a large atrial septal defect, which will need to be repaired, but we hope that won't happen until she's 2 or 3. In March Dr. P mentioned that she was optimistic that the hole will close on its own. She no longer believes that to be the case, but its amazing what the words "emergency open heart" will do for your perspective.

And then today. Ugh. Hattie had to be sleep deprived for this test, which meant bath time at 11pm and waking her from a deep sleep very very early this morning. Anyone who has spent months celebrating every successful attempt to help an infant fall asleep will understand how much I did not enjoy interrupting that slumber.

We went to the hospital and I really was not prepared for anything to be painful. This is a non-invasive test. It turned out to be the most miserable procedure we've had done so far. I don't know if it was actually painful or if the problem was Hattie's exhaustion. The tech had to mark her head with what looked like a colored pencil. I know this was painful because the woman(who had a very gentle demeanor) had to rub the stupid thing into my daughter's scalp for the marks to show up. I cannot wait to get the hospital survey, for once I will fill out the damn thing. Then she rubs an abrasive cream on each spot, dips the electrode in some goop that looks like the wax I shoved in my mouth when I had some kind of dental spacers as a kid. She sticks the goopy electrode on Hattie's head, covers it with a patch, puts industrial strength glue on the patch, and blows compressed air over the top. Repeat 25 times. Hattie is not a fan. In fact, she cried every time the woman touched her, even screamed a few times. My baby does not scream. She fusses, communicates, moans. She does not scream. This was worse than immunizations, even double leg immunizations.

Whoops, I got a little worked up there. Most days I don't think of us as a special needs family, but today I did. Babies shouldn't have to experience stress like that. I did what I could to minimize it-insisted on breaks, nursed throughout, held her the whole time-but it still sucked. And I know that there are babies who experience much worse, medically and otherwise. But it still sucked.

Silly Hattie

Tonight Hattie and I played "roll away from mommy."

We were lying in bed, nursing. She would roll twice, so that she was lying on her tummy. Then look around, laugh, make faces at me, kick her legs, we both laughed. She used her arms to pivot so that she faced me and started making the sign for Hattie Snacks. More exchange of silly faces and laughing. Eventually I roll her back to me for more nursing and we repeat the whole thing. After a few rounds she started rolling herself back to me, but only some times. Sometimes she'd do one roll, than lie on her back and giggle at the ceiling fan.

I love co-sleeping. Its like a sleepover, but every night.

Just keep swimming, swimming, swimming

Hattie loves to swim. I don't know if I've posted about this before, but I wanted to make sure to record this. HATTIE LOVES WATER! We went swimming today with our friends who have a baby 2 weeks older than Hattie and it is just excessively fun to get this girl in the pool. She now kicks her legs on command and smacks the water when I say "Splash splash splash!" I'm trying to train her to do both moves at the same time when I say "Swim." We aren't there yet.

She also loves running water. Its a major problem if I try to wash my hands without giving her a chance to do the same. I can't wear her and wash dishes because she gets PISSED. And no matter how long we are in the bathtub, it is not long enough.

If she's crying, you can actually get her to stop by turning on the sink. She'll go from crying to laughing straight away. That's how good natured this kid is.




Why yes, I am a fish. A cookie monster fish, to be precise.

Teething: My least favorite parenting experience so far.

June 30th: Hattie becomes unusually crabby...and stays that way
July 4th: A sliver of white appears on Hattie's gum...We're teething! No wonder she's unhappy!
July 6th: Hattie returns to her normal, happy self, although is less interested in independent play, making physical therapy a sometimes frustrating experience
July 13th: Hattie is becoming a little fussier again...
9:30am Today: I see a tiny pearl on Hattie's upper gum...the tooth has moved down! It looks like an ivory pencil lead protruding from her skin. It must be just a corner, but progress! Wahoo!
6:30pm Today: Hattie's gums are smooth and pink. No tooth in sight. That bastard went back into her gums! She's been chewing on my face all day and we don't even get anything to show for it!

The joys of breastfeeding

I think I was a better advocate for breastfeeding BEFORE I started doing it. Any time I talk about my experience with nursing, words like "thrush," "cracked nipples," "bleeding," "biting" and "PAIN" have to be used, unfortunately.

Hattie has developed this lovely habit of biting me. She doesn't have teeth, so I guess you'd say she is clenching down. But either way, it hurts. She seems to do it when she is feeling fussy, overtired or distracted. So we were having some luck nursing while lying down, but then it started again last week. And is being complicated by a thrush infection.

So last night I'm nursing Hattie and see a shadow in the corner of her mouth. Only nightlight is on, and its pretty dark, so I tell myself I'm imagining things. And keep telling myself that for 4 or 5 minutes. Finally I turn the lamp on and there is blood streaked all over her face. Not hallucinating! So that's good, anyway.

I find a little bit of blood in her mouth, but cant find a source. I shake Chris awake with phrases like "There is blood all over the baby and I cant find where its coming from"(Have I mentioned that my husband is a real trooper for putting up with me?) We can't find any problems in her mouth or sinuses(thank you NoseFreda) so we are assuming its from my traumatized nipple. Nice, huh?

By the way, if you are considering breastfeeding and have stumbled onto this post, it really is worth all the bad stuff. Seeing your little one smile up at you or fall asleep snuggled in tight is worth ANYTHING.

Elimination Communication

Elimination Communication(EC) is something I've been reading and thinking about since Hattie was born, but hadn't had the time or confidence to try. The theory is that babies, like puppies, do not want to soil the place they sleep and will signal that they need to pee or poop, the same way they signal that they have other needs. But since we put them into diapers we don't have to learn those signals, and eventually we train them to ignore the discomfort of hanging out in wet pants all day. Then we ask them to start noticing again right when they are busy learning about independence and the NO! word-age 2.

So with EC you read your baby's signals and provide opportunities for them to use a potty chair or toilet. For about a week I've been trying to giving Hattie potty breaks when she wakes up from a nap and it has been quite successful. Keep in mind that I often nap with Hattie, so over half the time I wake up and say "I should take you to the potty....right after this snuggle...oh wait, you just pooped. Lets snuggle more!" Clearly, this is me being trained to offer at the right times, not her being trained. But how is that different than being trained to ask your three year old "Do you have to pee now?" every time you see them wiggle or dance around?

Its actually really fun when it is successful. And so much less messy. I just flush the mess away, use one wipe to clean her up and away we go. If it continues to go well, I'm going to try to figure out her peeing cues, although I think that will be harder. Even if I don't get good enough to catch everything, I think this has to be helping her make some connections about what is happening in her body, and I think that is a good thing.

Yard work

The weather was gorgeous today, in the 70's! So we did a lot of yard work-raking leaves, cleaning out flower and garden beds, scraping gutters. And it was finally warm enough for Hattie to be outside with us while we did all of this. She loved it! She played in the grass, tried to eat our wind chimes and watched birds.

Raspberries!

Hattie loves putting her fingers in her mouth. About a week ago she started to try to talk with her fingers in her mouth, resulting in a raspberry like sound. Now she's figured out how to do it without the fingers in the mouth, and she LOVES to look around saying "whooooppffffttwhooo!"

I'll try to catch it on video, its pretty cute.

Good news!

Hattie sees a fabulous pediatric cardiologist, Dr. P. due to an atrial septal defect. From what I understand, this is a hole in the upper chambers of her heart that allows the blood to flow backwards, forcing her body to work extra hard to move all the blood she needs. The last time we saw Dr. P, in January, Hattie had a chest x-ray and it showed that her heart was enlarged. At this visit there were also 2 attempts at an EKG(ever tried to hold a 3.5 month old still long enough to complete an EKG?) and an echocardiogram, during which Dr. P managed to manipulate an infant toy to keep Hattie's attention, run the echo machine and alternate between soothing noises and medical descriptions of Hattie's heart. Quite impressive. At this time we talked about medication(which we decided to wait on), the hole was considered large, and we were told to come back in 2 months and watch for signs of heart failure.

Today the radiologist who looked at Hattie's x-rays could not even tell that her heart was enlarged. Dr. P said that it is still a little enlarged, but we think her heart is doing what we want it to, meaning that the heart will grow larger and the hole will stay the same size, gradually making up a smaller and smaller percentage of the chamber wall. Her weight continues to be good, she's active and her EKG looked great. We don't have to go back for 4 months!

Hooray!

Others looked for the Fountain of Youth, and again never found it. But they mapped Florida.

There is a piece of prose often given to new parents of children with special needs, called Welcome to Holland. It is beautiful, I first read it when I was pregnant with Hattie and we didn't know exactly what her special needs would involve. I clearly remember sitting at a computer in the kid's apartment at work, bawling my eyes out during a lunch break.

Now that I know the source of Hattie's troubles, I spend a lot of time reading about Down Syndrome. I love her care providers, but none of them specialize in Down Syndrome specifically or have time to keep up to date on the current research and wide range of therapeutic interventions parents are trying out on their kids, desperate to gain even the tiniest improvements that will make their kids healthier and happier. There has been a lot of progress in recent years that has given us more information about how the chromosomal abnormalities effect our kids, but no easy answers about stopping it. Nothing your pediatrician is going recommend, or your physical therapist will bring up at a visit.

I've found my way onto a website that lists interventions that a mother wishes she'd known about from the beginning and only discovered for herself through hours and hours of reading, googling, email groups, etc. And she writes

"It is like we have arrived in a previously unknown continent. Some came because of the love of challenge, and some were forced to come against their will. Nevertheless, we are here, facing a world of bounty, but also of extreme danger.

Some of us are explorers, and like the explorers of old, are looking for things that may not exist. For decades, explorers in the New World searched for a Northwest Passage. They never found it, but in the process that guy Mackenzie mapped half of Canada. Others looked for the Fountain of Youth, and again never found it. But they mapped Florida. New discoveries are happening all around us.

Some parents are more daring explorers than others. Some came and stopped at the east coast. And that was enough—and awesome for them. Some pushed west. Some are mountaineers who brave the dangers but benefit in the awesome beauties. Some, like Lewis and Clark are pushing all the way to the Pacific and opening a continent before us."

I have a clear image of the Fountain of Youth that I am pursuing. When I stop long enough to be honest with myself, I know it is a mirage, that I won't really find it. But along the way I will discover as much of Florida as I can, and every step I take will make things a tiny bit better for my sweet little girl, and that makes it worth it.

Part-Time

Officially, today is my first day of being a part-time stay at home mom. I asked my boss to cut down to 20 hours/week, which she approved. My part-time status begins today, although I think I'll be working 30+ hours this week since I didn't have much notice.

I'm nervous and somewhat sad to be losing some responsibilities at work. I love my job and my program. But I'm looking forward to having some TIME. Time to sleep, clean my house, eat food that doesn't come in a wrapper. Time to research the best things to do for Hattie, then actually do them with her.

I thought we could handle working opposite shifts, and maybe we could have in other circumstances. But most of my days are spent driving around town to appointments or staff meetings, then I come home, hand off Hattie and go back to work. I'm exhausted, not spending as much time doing her therapies as I'd like and my house is a wreck...I am not exaggerating. So, with spring fast approaching, here's hoping for positive changes.

talking

I love that this kid is at her most smiley and talkative in the 3 minutes before she is so tired and angry she can barely think. We go from "coo, giggle giggle" to "RAWR! ASLEEP ME!"

Aunt Kasey

Thank science for Aunt Kasey!

Chris woke up with a HORRIBLE backache today, bad enough that he went to the chiropractor, which is saying a lot. I really needed to go in to work for a little while, but couldn't leave Chris to carry around an 11 lb darling when he could barely tie his shoes.

So the lovely Kasey came over and took care of Hattie for a couple of hours, carrying, changing and generally experiencing life with Chris as a manager. Kasey is Hattie's "guideparent" a non-religious equivalent to a god-parent. Her job is to be an extra adult who is committed to Hattie, to be a mentor and friend, someone she can talk to instead of Chris or me, but who will give her better advice than a peer. Kasey took 3 days off of work to be with us during Hattie's labor and birth, has brought treats and companionship many times in the last four months and is just generally an amazing friend. I tried to repay her for tonight's caregiving with Whitey's ice cream, but her willpower is far greater than mine and she left without it. Now it is in my freezer, calling my name. Rats.

Rolling

This baby is trying her hardest to roll. I put her on her tummy today and she managed to get her butt way up in the air and most of her body tilted to the left, but she can't get that one arm out of the way. soon, very soon....

She's also displaying more signs of her unique personality...such as impatience. She was chewing on a toy that vibrates, but only for 10 seconds, then I have to push the button again. All of a sudden she lets out a shout as though someone has pinched her. I frantically search for the cause, then turn on the toy again to distract her, and she contentedly starts chewing on the pig's ear again, as though nothing happened.

OT Evaluation

Today Harriet was evaluated by an occupational therapist(OT) at the lovely Children's Therapy Center. What kind of occupation does a 4 month old baby have, you ask? Well, playing, of course! Hattie already has one OT through the Area Education Agency, Teresa, who visits us twice each month. Teresa focuses on oral strength and feeding issues, last time she gave us this really cool baby toothbrush that has little nubs on it. The point is to stimulate Hattie's gums and tongue to help her gain awareness of her mouth. Anyway, today we met Kara, who will focus on fine motor skill development with Hattie-grabbing, grasping, etc.

Hattie was in kind of a crabby mood, so Kara played with her in between bouts of nursing and pacing the room. Kara was very happy with Hattie's progress, she is reaching for things above her head, holding onto small toys and raking, which means she is feeling things with an open fist, as though using her hand as a rake. We are going to keep working on holding toys for longer periods of time, and encourage her to grab for things when sitting up next to a table. We'll be back to the CTC next month to see Kim, a fantastic physical therapist.

Getting back to the blog

I started this blog while on maternity leave as a way to document the happenings in Hattie's life. A combination of an online baby book for Hattie and a newsletter for our friends and family I guess. I never gave any one the web address because I wanted it to be finished first. Well, lets be real people. Ain't gonna happen.

I have about 20 unpublished posts started and 20 more in my head. So I apologize, but I hope to go back and fill in the blanks as soon as possible, as well as keep up on future happenings. If you are really interested in the minutiae of our lives, feel free to subscribe, I think that will update you when I post something back dated by months.