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.

 

play date

Jill and Dara came over Thursday morning for a play date. Dara is three weeks younger than Iris. It is really helpful to have another baby around -- and another mom -- to make sure that Iris is basically healthy and developing well.

In the afternoon Iris had an appointment with the pediatrician and was due for her shots. She is gaining weight well -- was 13lbs 2oz -- and her head has gotten quite a bit bigger, which made me happy. She still dislikes being on her belly but we're working on that.

 

follow up

I'm feeling much better after meeting with Dr. Sagel [the pediatrician] on Thursday and the Dr. Siomos and Dr. Howley at the Cardiac clinic on Friday. Iris has been breathing very well, though she did have a slightly elevated temperature and seems to be fighting something little. Dr. Sagel reassured us that Iris seems to be doing very well, "She looks like a healthy three-month-old. She's doing great." I think she still looks quite skinny -- and she is actually quite skinny -- but she's putting weight on fairly well.

Dr. Sagel suggested we stop fortifying her milk completely, and suggested that would help with the diarrhea she's had. She seems to have been right. She also said we should stop the Nystatin for thrush and see how Iris can do fighting it off herself. I continue to resist giving Iris the inhaled steroid Flovent but the pulmonary nurse wants to readdress this in the future. I am hopeful that Iris will be able to get by without Flovent as a daily regimen.

I'm sure other parents are all aware of this but the CDC and the WHO use differing growth charts so your child shows up in differing percentiles depending on the chart you're using. Here are Iris's records from the Children's Hospital since arriving.

The WHO [above] has Iris as being almost in the 14th percentile in the weight-for-age chart. Meanwhile, the CDC [below] has her almost in the 30th percentile. Go figure. I guess the percentile doesn't matter that much, but the trend. And her trend is clearly looking good.

We finally got a pulse ox to measure her oxygen levels at home. Getting the pulse ox involved a fairly emotive email to the pulmonary team and changing medical supply companies. We had to pay out of pocket for the oxygen set up but we continue to be under the [perhaps false] impression that we will be reimbursed by COBRA for this expense. After the appointment at the cardiac clinic it appeared she could handle coming down to 3/4L. She's been doing well on 3/4L as the pulse ox shows, which I've been checking more frequently than the doctors wanted me to do. However, in order for us to get to turn down her oxygen they said that I would need a fairly consistent record of her oxygen levels over an extended time...so I'm doing some data collection. She's been between 95-100% consistently. This would suggest we can try her on 1/2L but I'll wait till the afternoon to contact Dr. Siomos.

My mom has accompanied me to all the appointments and Evan has attended via iPhone. Mom has been particularly impressed at all our doctors who happen all to be female and to have children. Dr. Siomos has a 7-month old at home and yet she is always at the hospital. Dr. Howley has a 1-year old. 

immunizations

Evan and I took Iris to the pediatrician yesterday afternoon for her 8-week immunizations. She is now almost 11 weeks old, and so was a bit late in getting them. She got her first immunization just after birth and it was totally awful for me. I held her when they gave her the Hep-B shot and then started crying when I saw her little face register the pain of the shot. This time around I was slightly apprehensive because she would be getting many more shots but turns out that her cries were nothing compared to what we had heard during her time in the hospital. We gave her baby Tylenol in the evening and has been fine today. So, no sweat, really.

All growth signs are looking good -- she weighed 10 lbs 7 oz (4.73 kg). Her head is growing, though it's still small. And she's still very tall. We're eager to find out whether she is left-handed like her parents.

An update on medications: we've taken her off Zantac and simethicone so her med schedule is getting simplified. She now gets meds at 7:30am, 11:30am, 7:30pm and 3:30am.

The mornings have become increasingly normalized for me - I have been able to get runs in or other types of exercise (yoga this morning). I am hoping to do a half-marathon in October so the runs will have to become increasingly lengthy. Evan has been cycling to work but is still not getting the exercise he'd like to be getting. He has plans to explore the jiu-jitsu gyms in town but has been unable to figure out how to fit that in to his work schedule.