Mom, Evan is watching me and Nathan!

Cianna has been orchestrating getting Nathan to play with her and he's been playing a bit. I think she enjoys being in charge but also having somebody to play with. She got him to play a few turns of the game Candyland, they both enjoy telling the same knock knock joke repeatedly (oh, god, please tell it to each other and leave me out) and this morning they were playing ball. Nathan was playing by himself and Cianna joined him.  "Nathan, get ready! I'm going throw the ball to you!"  Cianna told me Evan was watching.  I'm sure he's watching a little. And it's good to see Nathan playing with his sister a bit. Briefly all 3 were occupied with this activity and didn't need my help. ;)

Happy and you know it

Reading

I'm really proud of Nathan's progress on reading this year (and really impressed with the work his teacher has been doing with him!). Here is Nathan with some of his sight words: And with his reading book: Super cool! His teacher says he has good skills but sometimes lacks the confidence to try. She is working on building his confidence and introducing new material slowly. He seems happy to show off his reading at home once he's learned it at school.

Evan at 8 weeks

Evan is making eye contact, tracking, and cooing-- generally being a baby.  He is over 12 pounds now!

5 1/2 weeks

Evan is 5 1/2 weeks old. He had an ultrasound of his hips, which came back normal. He participated in his first step up for Down syndrome walk, mostly by sleeping. He's doing plenty of sleeping and eating and is approaching ten pounds!

3 weeks

Evan is 3 weeks old. He also has his first cold and spent last night waking up screaming pretty much hourly. Other than that, he's doing fine. He is not the best night sleeper but spends lots of his time sleeping with a couple of alert periods during the day.

Both siblings are adjusting pretty well. Cianna is still very excited about "her" baby but she's also had some acting- out behaviors with mom and dad which are new. Nathan has learned to sight-read the word "baby " in addition to a whole list of words he has learned!

2 week pedi visit

At Evan's 2 week doctor's visit I learned that he gained 15 ounces in 8 days. He is getting some cheeks and I don't think we'll be worrying about his weight any further. No further concerns about jaundice either. Everything looks good except for loose hip joints, which we will have checked out via ultrasound in early November. The pediatrician said she does not suspect it is anything serious but wants to be sure. He's a baby, so is

doing lots of sleeping, eating, peeing and pooping. And so far his big siblings haven't managed to bring him home his first cold. I'm thankful he was able to start putting in some weight before that happened. At 7 lbs, the newborn clothes are fitting well instead of being too big, but with how well he's eating and gaining I suspect he will be a chunky monkey in no time.

Home!

After 4 nights in the hospital (boy, it felt longer than that!) Evan and I were discharged home. I believe they would have discharged me after 2 nights but kept me a third medically and a fourth on boarder status, meaning I could stay but they no longer feed or medicate me. On Friday, before I was discharged and moved into the boarder room, the doctor recommended I could room in with Evan Saturday night with the plan being that if it went well, I could take him home Sunday, a trial run if you will, to see if I could get him to eat adequately.  The discharge planner then asked if I wanted to do it Friday night since the room was available both nights and the doctor okayed Friday night. The plan was to do both nights, but I had a sliver of hope about going home if night 1 was successful. Since the nurse who weighed Evan Thursday evening said he'd lost a little more weight, down to 6 lbs 1 oz, I was not too hopeful, and all the nurses kept saying 2 nights. Honestly, on Friday I was nervous about it because Thursday night I had a hard time getting him to stay awake to eat as much as we would have liked. I was having trouble with both breast feeding and bottle feeding the expressed breast milk and the night nurse had to help me get him to eat more. As soon as we decided to do the border room, hours before it even happened, he suddenly started eating much better and gave me some hope of this going okay.

The boarder room is like a weird little motel room in the NICU, complete with bed, tv, and shower but no fridge or microwave.  Nurses check on baby once a shift and are right across the hall if you need them.  I won't pretend I got a ton of sleep Friday night in the boarder room but we survived the night, his bilirubin levels were okay, and the neonatologist assessed in the morning and said we could go home!

Evan has gotten much better at nursing and he has not lost any more weight since coming home. We are all adjusting to the change in our lives. His sister in particular is very excited to have him home but adjusting to what we can and cannot do with a baby.

I'm very glad I delivered in a hospital with all of the necessary medical technology to quickly stabilize Evan's breathing and provide care for him in the days after his birth. The Kaiser Roseville women's and children's center took wonderful care of him and me and I appreciate the options like boarding and rooming in that let parents have more time with a hospitalized infant.  Having the kind of breathing problems he had could have led to brain damage or worse if not treated promptly.  I had some really wonderful nurses who helped me through a difficult time and my recovery from surgery has been smoother than expected.  I wish it were possible to have even more time with the baby initially, when I was still receiving care, perhaps a unit where mothers and babies could receive nursing care together so that mom doesn't have to wait to get into a wheelchair to see baby, can breastfeed on demand where possible, and doesn't have to guess when it's time to ride the elevator up 2 floors to see her own doctors, take meds, etc.  However, we received excellent care promptly and were able to go home as soon as it was safe for us to do so. So glad to be home! 

Evan checked out fine at his follow up pedi visit and now we can get on with adjusting to having a new baby at home.

Baby Evan

Evan Donald was born by planned c section October 7th, around noon. He cried but was in respiratory distress with dusky color, grunting, and retracting when breathing. A neonatologist was summoned and he was taken to the NICU. He was on Cpap and prophylactic antibiotics. It is thought that he has fluid in his lungs, possibly due to an infection (hence antibiotics), immaturity of the lungs (which can sometimes happen even in term babies) or most likely due to amniotic fluid not leaving the lungs during birth (this can happen with c section babies). I was able to hold him briefly before he went to the NICU.

I was doing okay until I was told it might be many hours until I could see and hold him again. At that point I became sad and tearful. As a former NICU mom, I deliberately chose to give birth at a hospital that has a NICU, neonatologists, all kinds of specialists and specialized equipment "just in case", but I didn't expect to need all of that again.  I was expecting a routine c section birth and to have my baby with me right away and I was disappointed and sad that things went differently. They made an exception for me and allowed me to go see Evan in the NICU on my gurney after recovery. Then it was many hours before I was able to go again due to my nausea and vomiting and inability to sit up in a wheelchair.  I was finally able to hold him again the next morning.

Day 2 was a better day. He's come off the Cpap and is on nasal cannula. After a couple of not-so-great attempts, he was able to latch on and nurse. He seems to be nursing about every other try. We try every 3 hours and he seems to nurse every 6 hours. He is still on IV nutrition but weight has dropped from 6 lbs 9 oz to 6 lbs 4 oz.  Of course, the decrease in weight is normal for a newborn, but the NICU has more rigorous standards for weight maintenance and gain than they have on the floor.

We're expecting a brief NICU stay, although I don't exactly know what that means. Initially I was told it could be just a few hours. Now it's been a couple days and I'm hearing that it could be a couple more.

My mood goes up and down. This is not as big or scary of a deal as Nathan's NICU stay 7 years ago. Evan's life is not in danger. I am grateful that these issues are fairly minor and are expected to resolve completely.  Yesterday, I got on the elevator with the parents of a 27 week preemie who has been in the NICU a month now. The mom asked me if I was stressed. I told her that this is my second time around as a NICU mom and that I'm not as stressed as the first time because this is a term baby who will have a short stay. All true. But there is some sadness and disappointment about not having my baby with me and about not going home yet-- if everything had been fine with Evan, we could have gone home today. I'm sad about being away from my big kids, and I'm sad for Cianna who misses me and who can't meet her little brother yet because siblings under 6 can't be in the NICU. I know that this stay will be short, even if I can't be sure how short, and I'm grateful that we are here where Evan can get the care that he needs, and where the nurses have taken excellent care of us both. But I can't wait to spring the little guy out of baby jail and take him home to his family!

End of summer

Summer is winding down but we've done lots of fun stuff. Nathan has had many mornings kayaking with daddy before his ABA therapy in the afternoons, and I've taken both kids to the pool many times. Cianna is able to swim a few feet underwater now and Nathan is able to swim around in a life jacket. We've taken day trips to the lake, the coast, and to San Francisco via BART (Nathan had some initial subway fears but was able to calm down and enjoy the ride). We went to the annual Down Syndrome Information Alliance BBQ this past weekend. Nathan goes back to school the last Wednesday in August so we will have time for a few more adventures before fall, and before the baby comes in October.

Second grade

Nathan started second grade. He's at a new school with a new teacher because they have divided the sdc class and moved half of it. The new school is actually closer to our home and I've had the opportunity to meet the new teacher a couple of times now and I like her quite a bit. She does seem more focused on structuring her classroom and on curriculum than last year's teacher so this may be a bit of an adjustment for Nathan, who is likely not used to sitting at his desk (or even having an assigned desk rather than tables in the classroom). She says his tolerance for doing his work seems to increase daily. So far they've done some work on reading sight words and she is going to focus on requesting song titles by sight as well as some other sight words. There is confusion about which sight words he already knows since nobody left a list, so she is still figuring that out.  The teacher is still getting to know her students but has already identified that Nathan has a lot of strengths but often lacks confidence and motivation. Yep. And she's using music on her computer to motivate him. Yep. I think this will work out fine. 

Shopping

Coming home from Costco today, Cianna asked. "But why we didn't stay at Costco?". I asked her if she likes Costco. "I like all the stores. But I want to go shopping all by myself." I told her that when she is bigger she could go into a store and buy something all by herself if she has money and I would wait in the car. "No, you can stay home and I will take your keys."  Okay, she's going to have to get A LOT bigger for that!

And then she insisted on bringing in the giant Costco package of toilet paper herself AND putting some in each bathroom "because there's not a lot in them". Yes, that you can do (mostly) by yourself!

Is our baby ready yet?

Cianna had the opportunity to encounter some newborns recently at music class-- one of the other children in the class has twin baby sisters. Cianna entirely ignored the class and the instructor for most of the hour, and just wanted to see the babies, touch them, and "help" them. Hopefully she wasn't too much of a pest to the mom. She is very much looking forward to the birth of her brother and asks me all the time if he's ready yet. She also told me she will be "a mommy to the baby" and he will have two mommies. When her brother actually arrives in early October we will have to figure out what she can do to help. I'm trying to prep her for such concepts as the idea that she won't be able to walk around holding him! "I carry him". Nope. So we will have to figure out what she can safely do for her baby brother!

Little update

Nathan "graduated" from first grade and after a week off is in summer school. Seems to be going well. He's also doing 10 hours per week of therapies outside of school plus swimming through special Olympics together with our local Aquadarts swim program.

Cianna continues to enjoy preschool. She has pretty much potty trained herself. She also very much enjoys pretend play and dress up.

20 weeks !

Had our 20 week ultrasound. Everything looks good and we are halfway there. Cianna says his name should be "cianna, just like me!"  Um, probably not going to happen. She has been into kissing him (through the tummy of course) and saying "hi, baby" since I told her he can hear her. She says "I think the baby likes that."

"God Miss America"

I did not teach these kids any patriotic songs or songs about our country. First Nathan came home singing about "New York Islands" and was quite happy when I rapidly recognized it as "This land is your land", Googled the lyrics and sang it with him. Then Cianna came home singing about "Miss America". I thought that was odd -- does that pageant even exist anymore?-- but I figured she learned it from another little girl at school. Then I was hearing it coupled with "From the mountains" and realized it was "God Bless America". They must sing it a lot-- she knows it really well, although she is confused about some of the words. She was quite happy to make a movie of herself singing it, so here it is: "God Miss America".

Services

I was asking myself now that it has been a few months (3 months of ABA, 6 months of extra speech and OT) whether the additional services Nathan is getting for autism are making a noticeable difference. I think that the answer is yes, but a subtle one. When I reflect on it,  I am noticing an increase in Nathan commenting on things that are actually going in in the world as opposed to songs and stories from his memory-- little things like "I tripped", or "ouch! That hurt me." I've noticed a bit more response to questions rather than ignoring them, and more appropriate use of "yes" and "no" (one of his speech goals). I notice an increase in following simple directions instead of ignoring those (take your cup to the kitchen and put it on the counter, bring me your shoes). Small things that add up to more engagement with people in appropriate ways. I know that he has met or progressed on the specific, measurable goals that are written for him, but the question for me is whether that makes a practical difference in his day-to-day functioning in the real world, outside of therapy. And I think that it does. And so we press on.

Summer?

Is it summer already? Nope, it's the first of May. But it was 91 degrees and we had our first pool day this afternoon after Nathan came home from school.

Since Cianna vetoed maternity suits (I didn't love them either when I tried them on, but she didn't even want me to try them on-- she's got opinions) I will be spending the summer pregnant in a bikini hanging out with these guys who both love the water.  After an extensive internet search, both of them have swimsuits with reusable built in swim diapers. We've unfortunately already tested this idea out and it works. It's a good idea even for fully potty trained younger kids-- I've certainly been at a pool that had to get shut down for cleaning when an accident happened-- and you can find them online up to adult sizes for people with disabilities.

Grumpy

Nathan hates it when his sister cries and will often cry too. Often he seems really mad that she is making that noise. Tonight at dinner when she bumped her foot and cried, he loudly said "no hurt, no hurt!" Later, Cianna slipped getting into the bathtub. She was more scared than hurt but was crying. As I was trying to figure out whether she was hurt, she stopped crying and asked me "you please close the door? I no want my brother be grumpy." Awwww, that's just sweet.

Testing

When I was pregnant with Cianna, I forewent any prenatal testing since screening was inaccurate and diagnostic testing was invasive and with some small risk to the fetus. I wrote about that decision on this blog 3 years ago.

Fast forward to today, I am pregnant with baby #3 and the world of prenatal testing looks very different! I was given a noninvasive but highly accurate (99%) blood screening test at 11 weeks and already know that I'm having a boy without Down syndrome or trisomies 13 or 18. The change in the landscape of early diagnosis in 3 short years is amazing. I wonder what kinds of information will be available to pregnant women by the time Cianna is old enough to have children.

I know that many parents of children with disabilities fear that this type of testing will lead to earlier identification and thus to termination of affected fetuses, and this is a valid concern. Many of us probably could not have imagined raising and loving kids with Down syndrome until it happened to us, and maybe more people will choose to terminate based on the results of these tests. 

The rapidly changing world of prenatal testing is amazing and more than a little frightening. Parents can now learn sex in the first trimester without any invasive procedure and the possibility to choose whether to continue a pregnancy based on that knowledge certainly exists. 

For me, the testing was about more knowledge and ability to prepare if we did have a second child with Down syndrome. And of course as an added bonus, we got to find out that #3 is a boy and it's time to hand down all of the dresses and little pink outfits.

But there exists the troubling possibility of people using this technology to make decisions that are, to me, unethical.

One thing I have learned as a parent is that you just don't have control over everything about your child. Your actions and your words shape your children but don't control them. We may think we have control, choosing to have only children with the "right" chromosomes, but we cannot at this point predict which kids will struggle with substance abuse, anorexia, ADHD, or even (perhaps especially) autism. Even the knowledge and choices this technology brings us only gives us the illusion of control over the destinies of our children.

And the idea of selecting only "perfect" children brings to mind eugenics and of course the treatment of the disabled in Nazi Germany. It seems a slippery slope once we decide that one group of people isn't fit enough for life.  I think we all benefit from the diversity in our society, from learning about and accepting each other's differences, including the differences of those with an extra chromosome.

Challenger Baseball

Nathan is playing Challenger Baseball, which is a special needs team through Little League. The players are paired with older, typically developing buddies who help them with whatever they need help with, whether that's knowing which way to go around the bases or staying in the dugout when they are waiting for their turn at bat. Nathan seems to be enjoying it.