prednisolone baby

Iris was on a steroid burst again. She seemed to handle this round better than the first time. She actually napped. And she was very, very funny when she was playing. Here's a video I took of her walking back and forth, mummy-like.

springtime activities

 

Iris had her first Easter egg hunt. She wasn't really interested in the hunting aspect, but more the egg-shaking aspect. She picked up two eggs at a time and shook them and that was good enough for her. The event was mostly overwhelming for her since there were so many kiddos swarming the place. Evan's mom gave Iris her Easter dress and my mom sent the white sandals.

We visited the botanic gardens on Tuesday--Earth Day. It was a free day at the gardens, so it was swarming with people. There is an iris and lily garden that had just a few irises blooming. We stopped to get a couple photos with some irises.

 

One of Iris's favorite springtime activities is to play in our backyard and put rocks and dirt in her mouth. 

We are headed to State College next week so I can defend my dissertation proposal. Iris is still on 1/2L of oxygen, which is a great disappointment. After getting back from Texas in March she had to go all the way up to 1/2L and hasn't come back down since. We are about to start her on a short course of steroids (prednisolone) after having tried a few days on a diuretic (Lasix), which had no effect. 

We visited Iris's daycare on Thursday. She is set to start the first week in May and I am terrified. Even though the staff will get trained on her oxygen care I am sure that they are going to neglect her snotty nose and one of us will come to pick her up one day only to find that she is completely stuffed up and therefore getting no supplemental oxygen. She also isn't great at taking a sippy cup and she is going into a room where they don't really do bottle anymore. Evan reminds me that I am doing my motherly duty, which is to freak out before starting daycare. 

sick

I haven't posted in a while for several reasons. Most recently, the whole house has been sick. Evan brought back a nasty cold from his trip to Baton Rouge and he spent most of the previous week home from work. Iris and I got sick over the weekend and then my mom finally succumbed a day or two ago.

The weekend was pretty rough. Iris noticeably did not feel well and then started coughing loudly right around bed time on Saturday. I called the pulmonary clinic and (after many missed phone calls) we finally got a prescription for a single dose of steroids that we would give to Iris in an attempt to keep her out of the hospital. Evan fulfilled his fatherly duty and drove to the 24-hour pharmacy at 11:40pm to pick it up only to find that the steroid was in fact a pill that we had to crush and somehow get Iris to take. We finally were able to get her to take it at 2am with the help of a medicine dropper and a bottle.

She had been sleeping with us on the steroid night. The night before I mostly held her in the recliner next to her crib. She was so congested that we propped up her crib and had to suck her snot out repeatedly.

After giving her the steroid we had a crazy baby on our hands for 36 hours. She barely ate, wouldn't sleep, and needed constant attention. Meanwhile, I was spewing a river out of my nose, and was having trouble making enough milk due to lack of sleep and general sickness.

The good news is that we are all finally on the mend. Iris woke up rosy-cheeked on Wednesday morning and has been her old self, with the exception of some very strong desire not to be force fed baby food.

Another reason I haven't posted anything substantial for a while is that Iris has been driving me crazy by biting me while nursing. She has mostly stopped this habit, thankfully, but it has heightened my desire to wean her, which makes me want her to take a full bottle even more. She has gotten up to taking about 1 oz from a bottle, but not more. She also doesn't know what to do with a straw at this point and she only kind of knows how to drink out of a cup. All a work in progress.

laughing in the emergency room

Iris was having trouble breathing yesterday so my mom and I brought her to the emergency room just after 5pm. I called them on the way to let them know we were coming. I don't know if that helps things move faster but it couldn't have hurt. We've never had to wait the two times we've been in the emergency room but it probably is because she is a cardiac baby.

The short of it is that the steroids seem not to have worked and that it appears she still needs her Lasix to get rid of fluid in her lungs. In other words, she may not have had any inflammation in the first place and all she needed was to up the lasix dose since she's been gaining weight. The question then becomes - why does she still have fluid in her lungs? Unknown.

We got discharged from the emergency room around 11pm, maybe a bit earlier. I started out wanting very much to go home right away but at one point they talked me in to staying over night because she apparantly needed more oxygen [see below]. Evan drove down to meet us and helped re-convince me that there was no need to stay over night.

A big baby milestone was that Iris laughed for us while we were there. She has been laughing in her sleep but not while awake. Waking laughs are a new treat.

Now then, on to the oxygen story. I have become increasingly unimpressed with the medical folks we're dealing with. That's not to say that I am not sympathetic to the very real human aspect of practicing medicine. As a mother, though, it's infuriating when you think you are doing the best thing for your child only to find out that you have not been told the whole story. It's a problem of asymmetrical information combined with inconsistent care from the millions of nurses and doctors who see Iris. I could go on bu I'll get to the point.

When we arrived and were checked in, I confirmed that Iris was on 1/2 L of oxygen as directed by the pulmanology team at our Friday appointment. As far as I knew they left her on 1/2L when we were sent to the room. So imagine my surprise when the fellow came in to relay the message that they were concerned that she needed a full liter of oxygen to keep her sats [saturation levels] up. No one told me they had changed her oxygen flow at any time. The opposite happened at one point. When we took her to do a chest x-ray we put her back on our mobile oxygen tank at 1/2L. If she was on 1L beforehand they should have put her on 1L for the x-ray. They did not. All that time her sats were fine, meaning above 94%.

When I was told of their concern about her needing 1L we got into a long discussion about the chart and when they would have changed her oxygen level and particularly why they would have done it without telling me. Basically, I think it was mischarted and the nurses had a harder time setting her oxygen level on the wall than on our home machine. So they meant to set it to 1/2L but it was accidentally set higher.

Anyway, to avoid beating the dead horse, I later requested that they lower her oxygen when it was clear that 1L was keeping her in the high 90s and even 100, higher than necessary. At 1/2L she dropped to where they wanted her all along, above 94%. (This was after receiving her dose of Lasix, too, so that muddied the waters.) 

We all came to an agreement that we could go home and come in for a follow up in a day. She had a previously scheduled appointment with Dr. Sagel today, so we're keeping that and then return to the cardiology clinic Friday a 8:30am.

Today Iris is 3 months old. I typed this all with one hand while she sleeps in my arms.

steroid burst

We met with cardiology and pulmonology today in a 5-hour visit to the hospital clinic. They did an echo, an EKG, and an x-ray. The conclusions: she has very mild septal flattening while off oxygen so she will stay on the oxygen and continue the sildenafil. We can take her of the Lasix. Her oxygen saturation levels are low so she is now up to 1/2 liter instead of a 1/4 liter. The x-ray showed that she had hyper-inflated lungs so she is starting on steroids to address the inflammation. She will have 3-5 days of a ‘steroid burst’ and then we will continue to give her inhaled steroids for 3-6 months. Evan and I are both unhappy about this, particularly Evan. I am hopeful that we can keep this shorter rather than longer but it is important to protect her lungs as much as possible.

She gained weight again - averaging 25 grams/day for the 18 days between clinic visits. She is now 4.95 kg (10.9 lbs). We think of her as a normal-sized baby but she is really still quite skinny.