twenty months old

The last month has been mostly full of vomit. Iris is down almost a full pound but has lately been eating a lot. I have her on hemp milk now, and I think that will help a bit. I have also abandoned my vegetarian intentions for her and have been giving her (organic, allergy-friendly) chicken nuggets. Anything to get her to put on some weight in a non-dairy and non-egg and mostly non-soy way. It's not that she's allergic to those things, but they don't do good things for her belly. And eggs make her vomit.  

She had her RSV shot last Thursday and vomited that night. So the pediatrician and I agreed today that we would be creative in thinking about future RSV shots. She is supposed to have five over the course of five months. She's had two and I have no intention of letting her get another one in January. It's incredibly painful and traumatic for her to have to be held down and to get two big, huge shots in her legs. It makes regular vaccinations seem like a walk in the park. 

So we still haven't made it a full seven days without vomit since this whole thing started on November 14. I am hopeful that we'll get there this week... keep your fingers crossed. I started her on Losartan again this past weekend since it seems clear that the medication is not the thing that was causing the vomiting. She seems to be tolerating it well. 

Iris has started taking off her oxygen by herself in the morning after we put oil on the tape. Her face is red on both temples because of the tape and she hates to have us touch either temple. It definitely hurts her even though we try to be very gentle. This is a serious downside to having the oxygen off during the day but keeping it on for sleeping. 

Iris loves her morning smoothie.

Really loves it.

Iris's favorite things are playing in the park (especially swinging), reading her nursery rhymes (over, and over, and over), spinning around till she gets dizzy, looking for school buses, testing her limits with her parents, and painting with our nanny.

She has become very affectionate lately, thanks to a book called Hug Machine that she got as a present. She wants to hug and kiss everything. We went outside the other day and she said she wanted to hug and kiss the sun.

What did you say, Gama?

In the park 

untethered

Iris surprised us by continuing to vomit into this week, making it three weeks since the vomiting first started. After a break during the few days my dad visited, she started up again. Evan also came down with a totally debilitating stomach flu. He was able to pull it together to help our nanny clean up some of Iris's vomit while I was at work one day, but spent most of his time in bed. I came home that afternoon with chicken soup and saltines for the both of them.

The days have blurred together for me, but we took Iris to the emergency room one evening this week after vomiting. It wasn't exactly that she had a true emergency. Rather, we just had to have someone look at her. I had been on the phone with our pediatrician and our cardiologists several times in the past couple weeks, but hadn't brought Iris in to see them. This was partially because we had the idea that it was possible that Iris got a stomach bug from her most recent visits to the doctors and why expose her to more germs if everyone was reasonably sure it was a stomach bug?

The trip to the emergency room ended up not being all that helpful and we subjected Iris to a needless x-ray of her belly. That night I decided, "No more formula." She hasn't vomited since stopping the formula, which, by now makes four vomit-free days (assuming we make it another few hours tonight). She's now on rice and quinoa milk, and I'll probably add hemp milk to get in more calories. She is eating well and I think she'll put on some of the weight she has lost, which is 10 oz.

I took her to see the pediatrician the next day and she gave me some little jars to get stool and urine samples. Otherwise, she agreed with stopping the formula and wanted to get probiotics into Iris in any way possible. She also wants me to talk to the cardiologists again, which I was already planning to do.

No cannula in that nose.

In the midst of all of this, something great has happened. Iris no longer is on oxygen during the days! I can hardly believe it. Neither Evan nor I fully understand what it means. We've lugged around this heavy and annoying oxygen tank with us for 1 1/2 years, along with the maddening oxygen cord.  We've been longing for the day when we can free her from her oxygen leash and yet it feels so anti-climactic. And now, suddenly, we have a baby free who can run anywhere she wants, untethered. She still has oxygen when she sleeps, so we are not totally free of the oxygen.

Dara and Iris hanging out on Saturday afternoon.

Evan went out of town for a business trip for a few days and my mom flew back to spend a few days with us to help out. She had just been here a few weeks before and was here for the beginning of the vomiting episodes. She has been a huge help in every way imaginable. The house is cleaner when she is around, and the endless pile of laundry in our TV room diminishes. We also get as many date nights as we can cram in. And it's really fun to hear Grandma and Iris laughing together.

Iris loves her Grandma...

...because Grandma makes funny noises.

 

thanksgiving

Thanksgiving this year was very quiet. We had planned to have a bigger gathering, but it ended up being just my dad joining us, because Iris had been terribly sick for more than a week prior to the big day. She had started vomiting before I left for two nights to a conference on the 20th, and basically kept it up until the Tuesday before Thanksgiving. We stopped giving her the Losartan, in case she was having a reaction to the medication, but it seems like she might have just picked up a stomach bug. 

  

Granddad's pretty crazy about Iris

I went to yoga in the morning, which was a fantastic way to start the day. Jill and her family came for a short visit, and Iris got to practice hugging and kissing a lot. We had a big meal to celebrate, and Dad gave us a Thanksgiving Day quiz. 

Dara & Iris play with toys

I'm not sure when we'll start her on her medication again. I'd like her to gain some weight back now that she's feeling better. She went a few days without eating anything at all and basically only having formula. It's likely that we'll start her on the Losartan in a week or so.

Otherwise, we are doing okay. And by okay, I mean that there are a lot of highs and lows, related to all sorts of health and insurance woes, along with the regular challenges of parenting, taking care of ourselves, and maintaining a relationship. Things definitely look brighter when Iris is feeling good, though, so we are relieved to have her keeping her food in her belly again. So -- there is a lot to be thankful for this year, and I'm glad to have a day devoted to the intention of gratitude.

Iris having fun playing with holiday Tupperware

Iris and her favorite Baba

ten months old

I've been looking at photos and videos of Iris over the last ten months. She's growing so well. She's particularly growing well now that she's off digoxin. Her ten month present to me last night was to take 4 oz from a bottle. However, her Valentine's Day present to me was to get a nasty stomach bug and vomit her insides out this morning. She's doing fine, but definitely under the weather for her first Valentine's Day. 

Iris on February 11 -- ten months down

For her first Galentine's Day, Jill and Dara came to visit. The girls had fun together but are not sure how to touch each other without grabbing and pulling.

Dara & Iris

new crib night

The baby monitor arrived yesterday in the mail so Iris slept in her big-girl crib last night. I got almost no sleep. We had been keeping her in her bassinet, which had been in our room with us (actually on our bed). It is much easier to check on her when she is sleeping right next to us so last night was pretty sleepless for me. I hope that I'll learn to sleep better with her in the other room.

The big event of the day for Iris is that she started lifting her head forward as if trying to sit further forward (or up) in her bassinet. I have been worried that she won't keep up with her physical development because of the surgery. We're supposed to be doing tummy time with her but keep an eye on her pain cues.

I have been successful in incorporating walks into our daily routine. Yesterday's walk was quiet and cool. Today's was much hotter. I also was also able to read some of Gulp: Adventures on the Alimentary Canal by Mary Roach. This is the book my book club is reading this month and I am very hopeful I'll be able to attend the June meeting. This is the same book club I was in back in 2010 when I was living in Denver. A couple of my girlfriends from high school are in it as well as some of their friends. I really look forward to getting involved again.

I've been getting many compliments about what a good job I'm doing with Iris. While I (of course) appreciate the positive feedback, I really don't think I'm doing anything that anyone else wouldn't do. I had planned to be home with Iris during this time even before we knew of her health issues. Confronted with this new reality, we are responding the only way we know how... I think. That said, it would be very easy to wallow in self-pity. I have found it tremendously helpful to hear from those who have had similarly difficult experiences. I generally enjoy reminding myself that I am not at all that unique; in the case of Iris's recent health issues, I doubly enjoy knowing that our story is not all that unique.

It also helps to remind myself that none of this is permanent. Soon Iris will have grown out of her reflux  (cross your fingers) and she will not need the various meds and oxygen anymore. That will be a happy day. A year out (for the digoxin), but a happy day.

In my limited free time I have done some perusing of available jobs nearby. After living at Children's Hospital for nearly 3 weeks, I had in my mind that perhaps I'd try to get into hospital administration rather than higher education administration. I miss having a job (outside of the house) quite a bit. I have decided to take a leave of absence from my PhD program. This means that instead of defending my proposal in August I will take off the the fall semester and hope to defend in the spring semester. After I defend my proposal I will be ABD (all but dissertation) and I will then (only) have to complete the dissertation itself and defend it.

Today was a two-vomit day. I keep trying to tie it to a particular medication. Really, I just want her off of all of them.

Tomorrow's goals: walk, nap, call opthamology for appointment (I keep forgetting that one), write Anne a letter.  

doctor day

Trips to the doctor take pretty much all day. I was prepared for this but unfortunately it meant that it was unlikely for me to get a nap. (Luckily, I was able to squeeze one in after Evan got home). Our appointment at the Cardiac Institute was at 12:30pm and I left the house around 11:40am to get there. It's amazing how much longer things take when towing a baby and baby gear.

While we were in the waiting area the cardiac surgeon who operated on Iris passed by and he stopped to say hello. He's done that several times when we've been in the hospital. Today we chatted about Iris's health, as always, and he asked whether the opthamologists had said anything more about her eyes. He also shared that his dad lives at home with him and therefore has learned how trying it can be to deal with oxygen tanks. That's true, but what's more trying is Iris's medication schedule.

Unfortunately there was no weaning from her numerous medications today. There was discussion of whether to take her off of Lasix (a diuretic) but no dice. So she remains on Digoxin (for SVT), Sildenafil (for pulmanory hypertension), Lasix (for pulmanory hypertension), Zantac (for reflux), Prevacid (for reflux), Simethicone (for gas), and (newly) Nystatin (for thrust).

Here's the good news: she gained weight since her Monday clinic visit. She tipped the scales at 4.49 kg (9lbs 14oz). This is essentially the same as at the pediatrician's on Thursday (yay for consistency) but more exciting is that this weights equates to a 21-gram daily gain since her last clinic visit. That falls within the "normal" range what babies are supposed to be gaining: 20-30 grams per day. The nutritionist told me not to change anything except that I can incorporate slightly more nursing as long as I make sure to keep up with the fortified breastmilk using formula. Honestly, it's a pain to have to pump every three hours so although I'm glad that she's gainig weight, I would love not to have to continue with the feeding/pumping regimen.

Lastly, we can now stop putting a bandage on her incision wound. It has healed well and can now stay open to air. So all in all, the visit was a success. We'll return in two weeks, at which time they'll discuss weaning off meds/oxygen depending on the results of tests (which tests? not sure). Next up: vaccinations, on which she is late.

Evan rode his bike to work today (50 minutes door-to-door) and I was able to get a bit of exercise in the morning and a nap early in the evening. As I write this the dishwasher is running and I keep thinking I am hearing Iris cry. She is asleep -- not crying.

Tomorrow's goals: go on a walk with Iris during the day, no vomit, start to get her on a better eating schedule, possibly catch up with some friends, read a book (?).

concerns

Iris has thrush. I think she is not eating so well (very) recently because of it. I asked someone -- perhaps one of the cardiologists at her clinic appointment -- about it and she said that it wasn't a bad case of thrush. Nevertheless, I am worried. I bought acidopholis to give to her, something that Dr. Sears recommends. She is also congested and seemed too sleepy this morning so I turned her oxygen up to 1/2 liter instead of 1/4 liter. The nurse at the pediatrician was not able to get her oxygen saturation level above 94 at that time and I think it's because of whatever congestion she is dealing with. I have tried to suck out some mucus from her nose a few times and have had varying levels of success. She vomited twice this morning to make up for her recent vomit-free past. This is doubly worrying since she hasn't been eating well. I am tired and need a nap. Evan worked this morning and is now sauteeing some veggies for dinner. 

tiny victories & daily goals

We are getting closer to finding a daily routine that approximates sustainabilty. The daily grind involves giving Iris her medications five times a day (these are oral medications, not shots), changing her incision coverings once a day, making sure her oxygen tank is working, fortifying breast milk with formula so that she gets more calories, recording the amount she eats, trying to pump every three hours, and then washing all the syringes and breast pump materials so we can start over again. All that is added to the normal babycare stuff: comforting when crying, changing diapers, playing...

In an attempt to find a routine we've found it important to set exactly one daily goal. Two days ago it was "nap for Sarah." Yesterday it was "morning run." Today I am being ambitious. My goals are: do some laundry, take a nap, go on a walk with Iris, and post something to the blog. A shower would be good, too. That might wait till Evan gets home.

There are some tiny victories to report. Iris is still averaging one vomit a day but yesterday's daily vomit was small -- what I would call a "normal kid" vomit. She barely noticed it and was happy before and after. Yesterday also marked the first day I drove alone with her. I have been nervous to drive by myself but she did great. We had to go to the pediatrician's office - about 10 minutes away. The main news is that she gained weight since her first visit to the pediatrician. Her new weight is 9 lbs 14.5 oz (4.49 kg). This is what she weighed at the emergency room a couple days ago. This is also up 7.5 oz since her visit last week to Dr. Sagel. Dr. Sagel was really impressed with her weight gain and encouraged me to start nursing Iris again rather than exclusive bottle feeding -- or at least to begin to reincorporate nursing.

Some other funny things that happened at the pediatrician: Iris peed on the table after we weighed her naked. She then pooped and peed again as the nurse was trying to take her (rectal) temperature. The nurse almost got her face pooped on.

Iris is starting to hold her head up on her own when I burp her. She is also cooing and making sounds that sound an awful lot like "hi."

As far as long term goals (i.e. this weekend), I am hoping that the three of us can have a small visit to a park on Sunday morning (Father's Day) before it gets too hot. And we're also working on getting Iris to bed at a reasonable hour. All we have read about parenting emphasizes the importance of predictability and routine for children so it's also very important to me that we get her into having a regular bed time. I expect this to take a while to lock in. 

emesis

Dealing with our daughter's medical problems has brought with it many new vocabulary words, one of which is an especially persistent annoyance = emesis.

emesis [ˈɛmɪsɪs]

n

(Medicine) the technical name for vomiting

[via New Latin from Greek, from emein to vomit]

Iris has one vomit a day. It is a rare treat when she makes it an entire day without a vomit. This may be a sign of reflux, but we are under the impression that the Zantac and the Prevacid are doing the appropriate things to combat reflux.

Yesterday was vomit-free and I was under the impression that today would be similarly vomit-free but she had her daily gut clearing while we were at the cardiac clinic for a follow-up visit.

The follow-up visit consisted of an EKG and an echo while Iris was on and off oxygen. They found that the oxygen is still helping her (i.e. she has septal flattening while off oxygen) so she is staying on it. We also were given the results of some of her genetic tests, which came back negative. We are still waiting on the results of some of the tests and I will be calling the geneticist later in the week to get a clearer idea of which results these were. I think we can tentatively say that she doesn't have any of the scary syndromes associated with aniridia that also include cognitive developmental delays. A good thing.

Iris has shown progress over the weekend in terms of her weight gain, but it's not enough. She went from 4.25 kg (9lbs 6oz) to 4.3 kg (9lbs 8oz). They want her to be gaining 0.014 kg (0.5 oz) per day and she is missing that mark. Her vomiting certainly does not help the matter.