baby mouth tricks

learning curve

Since Iris is our first child there is a lot that we don't know about typical babyness. It seems pretty clear that my concern about Iris over the last several days was due to teething. She has a strong affinity for frozen washcloths in her mouth and Tylenol certainly helped. An added benefit to Iris's teething is that she has gone back to breastfeeding full time and is almost never using a pacifier. This make the anti-plastic person in me very happy. I also had the ingenious idea to turn our ice maker on in the freezer. So now we have ice with which to cool her tender gums.

We took Iris to my friend Jill's baby's name ceremony on Saturday. This is a Jewish ceremony. Several of Jill's girlfriends were there along with their babies. It was fun to see all the child energy in the room but I was also preoccupied with trying to get Iris to take her bottle [which she did not].


An update on the house: we are getting all the floors done or re-done this week and the contractors should be done today. We will then work to clean up very well and get rid of any spiders. Evan will install some ceiling fans and then we'll begin moving things in. We are waiting for our kitchen cabinets to arrive, still need to buy a fridge, and then get the concrete countertop installed. My dad and brother plan to come up for a weekend to help us do a lot of the moving and since my brother happens to know a whole lot about tree pruning and tree care he is going to take care of some of our yard mess.

great-grandma's quilt

My Grandma Jaramillo made this quilt for me when I was born. I'm sure it helped me learn my nursery rhymes.

side effects

In the time since returning from Colorado Springs Iris has started afternoon [happy] shouting fests along with tons of drooling and an aversion to eating. Naturally, I am concerned about her weight gain. I talked to the various medical professionals at the pediatrician's office and the cardiac clinic and the consensus seems to be: it's probably just teething but watch her over the weekend and maybe go get her weight checked on Monday. She is not dehydrated. Nor does she have a fever.

She is possibly hyperactive but no one seems to care about that. I think I'll record her next hyperactive session and see if anyone changes her mind. Some of the side effects of her meds include 'psychotic episodes.' How one would determine a psychotic episode in a baby is beyond me. In general I am surprised that the doctors don't seem more concerned about the side effects of the medications. Every time I bring up the issue of side effects they say, "She's on such a small dose that it would be unlikely to see...." Of course it has taken me weeks to come up with the thought that: who cares how small the dose is, if it is big enough to have the intended effect then it is also big enough to have unintended effects and therefore they should be more concerned about those side effects.

a welcome respite

Living in Denver has its perks. One of them is being close to the mountains and another is being close to New Mexico. Evan's job also has its perks. One of them is a company vacation to the Broadmoor in Colorado Springs [incidentally featured in Act Three of This American Life's episode 459: What Kind of Country Is This?].

 

In addition to getting to meet a lot of Evan's co-workers, my dad drove up to help watch Iris. 

Evan, Dad, and Iris heading back to the room.

 Having him there was very helpful not only because he cared for Iris but also because he served as the weekend photographer. 

Dad getting ready to take a few photos of the mountains

Iris did well the entire weekend [with the exception of a difficult drive on Friday]. We took her with us to eat a couple times and she was very well behaved and refrained from testing out her vocal cords.

the media on aniridia and iris implants

I had some time on my hands the other day and found several interesting articles/videos discussing aniridia and the possibility of having surgery to implant irises. I'm posting all this not because I think Iris should get iris implants necessarily, but because I'm hopeful that when the time comes for us to make decisions about what to do with her eye care we will have some legitimate options open to us.

Iris implants are controversial. Below are a selection of videos from the TV show The Drs about a young woman who had iris implants to help correct her aniridia.

The first video is her backstory

 The second video shows a lot of yucky eye surgery stuff.

 
 Third video shows the good outcome of the surgery.

Here's another story about a teenage boy who had similar surgery done. And finally, here's a New York Times article about how risky it is to have iris implants done for cosmetic reasons.

crying in the costco parking lot

I went to CostCo earlier this week. It might have been Monday. The trip went remarkably well; I wore Iris in my baby carrier and put the oxygen tank in the cart. We have a small, portable tank that is appropriate for travel. Having a baby with you makes everything go much slower and I have found that I am able to enjoy being forced to slow down [so long as I am not holding anyone else up].

I wound my way through the warehouse and, as always, some people noticed the oxygen and others commented on Iris's nifty sunglasses. It is awfully bright in a lot of stores so I try to leave her sunglasses in such situations. It doesn't bother me at all that people notice Iris's particular accoutrements. I don't even mind it when they ask, "Is she a preemie?" or "What happened to her?" But this time around I imagined having to tell a three-year old or four-year old Iris that she shouldn't feel self-conscious when out in public. "You just let people look and you keep walking," I imagined I'd say. And remind her of the valuable lesson my dad taught me, "People are far less interested in you than you are in you." Or alternatively, "People are more interested in themselves than in anyone else."

As we stood in line at the cashier my eyes settled up on a few pre-teen girls who were out with their mom. For some reason, seeing them sparked in my mind memories of my sixth-grade self playing volleyball and all the fun I had through the years. Then I had the unfortunate thought that perhaps Iris would never be able to play volleyball and I got a little choked up. I've generally done a good job of keeping such thoughts out of my head -- Iris is going to show us who she is and what she is capable of and we have no reason to mourn the loss of any imagined future. And so far we've been told to be fairly hopeful about her eyes. She does, after all, have some iris. It's not totally absent:

The iris in both eyes is fixed -- the pupils never constrict.

In any case, I was still a bit shaken by these thoughts rolling around in my head as I headed out to the car. I started unloading the cart but it was very slow going. I heard some voices behind me; a mother with her three children. The rolling of their cart got a bit louder as did their chatter. And then I heard, "Do you need help?" The mother was talking to me. I turned to her and said yes, I'd really appreciate it. And that is what brought on tears. In about five seconds she had my car loaded up and her son had taken my cart away with him. "Don't worry about it, I've been there," she said, continuing on her way.

I'm sure she must have noticed my emotionality during the whole thing and that's fine. I'm not particularly ashamed of my own tears even in public. It makes me wonder, though, if others have stories of crying in public. I cried for basically three weeks straight while we were in the hospital trying to figure out what was going on with Iris, but hospitals don't count. I've also cried in restaurants several times, movie theatres [for reasons other than the plot], I'm sure the list goes on. Oh, and one of my favorites - on the 4th floor of Rackley in the Center for the Study of Higher Education at Penn State in front of a couple students and Dr. Geiger. Actually I've cried in Rackley more times than I'd care to admit.

4 months old

Iris is 4 months old as of Sunday. She's definitely growing and gaining weight but still so darn skinny. She eats plenty but I wish she were a bit fatter.

Baby Iris at 4 months

Her favorite things to do these days are: to practice standing and sitting up; to put hands in mouth; to figure out the thumb sucking thing; to flail her right arm up and down when excited; to kick a lot; and to go on walks in the stroller. Oh, and to vocalize:

a Morgan family vacation

Evan told me once that his family doesn't take traditional vacations. Instead, they get together and work on big renovation projects. Evan's parents came for a work vacation this past week. And work they did. In addition to painting the entire house, they installed recessed lighting in the living room, knocked down the decrepit patio roof, brought in electrical outlets in the kitchen so we can have under-cabinet lighting...the list goes on. Evan took off some time from work so he could also help with the house. I stayed with Iris most of the time but was able to do a bit of painting on Friday when Laurel came to watch Iris for a bit.

Taking a break for dinner

We had a really nice visit though I'm sure that both Montie & Teresa would have liked to have spent more time with Iris. We were able to spend the evenings together and began talking about plans for the holidays.

diagnoses & prognoses

We spent Friday afternoon at the clinic to meet with the cardiology team and the pulmonary team. Iris has been doing really well and I was feeling upbeat about the visit. As I've mentioned in the past, I realize I have not been particularly explicit about all of her diagnoses. I have tried to right that on this page. We had been under the impression that she was perfectly healthy--save for a case of reflux--so this was all a huge surprise to us.

As far as prognoses go, the doctors had prepared us for the worst. The worst being: shortened life span, neurological and cognitive development problems. After being shocked with the worst possible outcomes we have continued to ask what they foresee for Iris.

Their responses are quite positive: from a cardiac perspective, they will monitor her closely for years to come but hope to have her off the medications by age 1. She still benefits from the oxygen's vasodilation [widening of the blood vessels] effect but they do not expect that she will need extra oxygen for the rest of her life. On the pulmonary side, she is breathing much better and her oxygen saturation levels are up. There is added risk during flu season so we are to be extra careful not to let her get sick and if she does to respond immediately. The pulmonologists think that she will grow out of all of her lung problems so we have to just wait and monitor her ease of breathing and oxygen saturation. Yesterday we tried her off the oxygen for a short time and her saturation levels quickly dropped to the low 80s. When she is on a 1/4L of oxygen the saturation levels are in the mid-90s, right where we want them. Finally, we have to wait until October to see the ophthalmologist again. Previously we had been told that the eye structure looks good and that she probably has pretty good vision. They will test her vision when we visit again. She does not have total aniridia so she is able to handle being exposed to some light. She does show sensitivity to indoor light so we try to keep the lights low when it seems to bother her. Outdoors she always has sunglasses on, unless it is dusk.

She has been tested for genetic disorders associated with aniridia and cardiac problems - all of the tests came back negative. This is a good thing, however, it is confusing because aniridia results from a deletion of the PAX6 gene on chromosome 11. The geneticist said that this deletion probably didn't show up on the test because it is a smaller deletion and suggested [at my request] that we get further testing to determine how large the deletion is.

We won't know about cognitive problems for quite some time. The surgery could have caused some brain damage and lack of oxygen could have also caused problems. But she is hitting all her developmental milestones perfectly so we're hopeful. She is one of the most social babies I've ever seen [not that I have much experience] and Evan is very proud of how happy and interactive his extroverted daughter is. "It's so amazing to see her growing and developing," he remarked the other day. "I'm sure all parents say that." Yes, an awful lot do, but we still count ourselves very fortunate to have such a sweet girl.

Because she is looking so well we don't go back to the clinic until November. Now we just focus on growing -- she is now 12 lbs and 25 inches long -- and playing.