A hectic day.

I won't go into it too much but it was quite a hectic day for our family. Ian's surgery was moved back and forth a few times. First it was supposed to be 10:30 am, then 1 pm, then back to 10:30, again back to 12:30 and they finally took him @ 1:40, exactly at the time Lila had her doctor's appointment with the Pulmonologist, also at UCLA. I was going to attempt to bring Lila up to the hospital and juggle her between seeing Ian and the Child's Place (a play room for patients and siblings of patients) in order for me to be there for his surgery but because it was moved around so much, and so close to her doctor appointment, Mike ended up bringing her up. This was a good thing because it would have been too much. As it was, it still turned out to be a bit tricky.

Bottom line is, Ian had his surgery and it went well. And Lila made her appointment and, it turns out she has asthma, which explains her persistent cough which has been lingering on and off for over a year.

While Ian's surgery is quite "routine" for babies in the NICU, it's tough to see. I was there with him before he left and he was quite frustrated because he couldn't eat. Especially when I held him close to my skin. I'm assuming he was wondering why I wasn't nursing him. I'm sure he could smell the milk. I pumped right before I came in but was there long enough to really need to pump again by the time he left. It was tough to see him so distraught. Generally, he's a pretty consolable guy. A change of position or a snuggle usually helps. But today he really didn't want as much time against my chest, but more preferred to be held on my lap facing me. At one point I realized I really needed to pump so told the nurse and we put him back in his bed. Of course then they said they were minutes away. So I put off pumping and tried to console my little guy while he was squirming around so upset. Eventually he would suck on his pacifier (with the stuffed giraffe attached which is a fabulous invention).

They picked him up at 1:40, like I mentioned, the time Lila was to meet with Dr. Pornchi for her cough. I quickly set up my pumping stuff in Ian's empty pod, sent a text to Mike, pumped for a short time and rushed over to the 200 building to meet them. Luckily I arrived before they had to go in. Lila proceeded to show me every Disney picture on the wall, which there were many. We met with Dr. P and through a series of questions, he deduced she has asthma. Thank goodness both Mike & I were there because it would have been almost impossible to have a conversation with him just with one of us. Lila was just too wound up.

Finished with that appointment just before 3, the time we were supposed to be available to meet with the Neurologist but no one could get ahold of him all day so we didn't know exactly when he would be there. I was originally planning on taking Lila over to a friend's house in Westwood to play with her kids while we met with the doctor but it was just getting too late. We were also a bit hesitant because she had been to quite a few different places lately and even though they are all friends (of mine and kids friends of hers) we still felt she needed to just stay with us. How that was going to work, I was really uncertain.

The Childs Place was open until 4 and if there's an available volunteer to play with her, she can stay there on her own. So Mike took her over while I went to see Ian. Soon after a doctor from genetics came by. She wanted to speak to both of us so we headed over to where they were. Mike & I slipped out for a few minutes to speak with her about a doctor in Chicago who was going to look at Ian's MRI (something we'd already spoken about before). We then picked Lila up and headed over to see Ian, which she was so excited to do!

As soon as we arrived, they let us know Neurology was there to meet. Of course... now what were we going to do with Lila. We were just going to wing it with her in the room until one of the fabulous nurses offered to hang out with her. She was so happy to go.

So basically like the meetings on Thursday, there was no really new news in the meeting. This, of course, is a good thing. There were some ups and downs. The downs were that the things Ian is doing now, sucking and swallowing, are not necessarily what he'll do later. Dr. S (the Neurologist) said that now they are reflexes that the brain stem is controlling but once the cerebral cortex kicks in to control these things, he's not sure if the functions will continue. This is something I didn't want to hear because of course I wanted to think that we've gotten past at least those particular hurdles but I guess it's just not that easy.

It's all a matter of waiting to see how he develops and, giving him as much stimulation as we can just like we did for Lila. Dr. S is telling us that all we'll need for him we'll get from the Regional Center, although I'm still going to take him to see the two Osteopaths I've spoken to in order to assess how they can help him. The Regional Center is a place I've heard so much about but have not yet connected with although now I've had conversations with the discharge nurses and they let me know they are getting these connections going.

We found Lila in a small meeting room in the NICU drawing on a white board with Katie. So adorable! We finished off with another look at the MRI which was interesting. He showed us the portion of Ian's brain that was not right and how it looked different from the rest. I know they showed this to us before but I didn't see it then. The good thing is, although there was obvious issues, he said Ian's didn't look like and extreme case. This is a really good thing. Again, we'll see how it pans out.

The three of us headed over to say goodbye to Ian but I realized I was way overdue for pumping so Mike & Lila headed home while I did my last duty there. He was still pretty out of it from the surgery so I did my thing, gave him some kisses and headed home myself, stopping in the gift shop on the way out for an attempt at a little Mother's Day gift for my Mother-in-law and a stethoscope to go with Lila's gifts for her birthday on Wednesday. Then back home for the nightly routine. Another hectic day coming to an end.