I'm just so tired. And to be honest, I'm not sure when the next time I won’t be. I just keep trecking along.
Ian is still making progress. They are determined to get him off of all IV meds, which gets him closer to coming home. He is now down to just Milrinone and his dose keeps going down. So far he seems to be tolerating it fine which is a nice change. They are going up on the other med (I can't remember the name right now) that is supposed to compensate for the lowering of the Milrinone.
As of Wed night, he's completely off of any other nutrition besides breast milk and as of this morning, he's up to a full feed which is now 67cc. I need to work on keeping up with him. I'm barely making it with what I'm currently producing. I have been taking Fenugreek and some other colic tabs I picked up at the homeopathic pharmacy that the pharmacist said would help with my production. Also have been drinking a lot more water and trying to eat more protein. Having major soreness though. The lactation consultant in the NICU came by yesterday. She gave me larger shields for pumping and said maybe I should see my doctor. Because I’m having so much pain I might have what they call Thrush. I didn't try to nurse him again yesterday because of it. If I do have it and am nursing I guess he can get it in his mouth we might pass it back and forth to one another. Would have hurt too much anyway. We'll see what the doctor says.
I still am holding him quite a bit which is still so lovely. I’ve just decided to ditch any top and have him against me. It makes such a difference in how we connect. He smells so yummy I just want to munch him up! He seems to really dig being close to me as much as I enjoy having him.
He’s gaining weight and is now almost 10 lbs! It really makes a difference in his look. His little face and cheeks have so much more of a "normal baby" look to them although his legs and bottom are still so small and thin. Coupled with the cute onesies, the mobile and blankies and, besides the tubes and wires coming off of him, he almost looks like he could be sleeping in a crib at home.
They’re having to give him a potassium supplement as well as some electrolytes. It all comes through his feeding tube. He's now been taken off all other nutrition (which included these supplements), I guess his body has to get used to making up these on it's own. He's also still getting his diuretic, which causes the body to deplete them as well so maybe that’s the problem.
Funny thing happened while I was in yesterday morning. We’ve been stressing over Lila’s persistent cough and have been trying to get another opinion as to why it won’t go away. We’ve been asking Ian’s doctors and they finally got back with a name just the other day. I meant to make the call in the morning on my way in but was running late. I was trying to get in when the OT would be there and the nurse said 11 am was good. --- As I walked in, they were doing rounds with the new residents and speaking about Ian. That’s always interesting. A very good thing I overheard is that they changed their mind about doing another MRI. I was going to speak to Dr. Anderson about that anyway to find out why they needed to do another. In order to do it they have to sedate him and probably intubate him again, which I was not happy about. He’s finally getting a decent cry, probably because his throat is finally healing a bit. --- Then a doctor came by and introduced himself. His name was Pornchi. This is a name I’ve been searching for the last week!
When Ian was first transferred to UCLA, a couple of people had suggested I contact this doctor for Ian. One woman said he saved her child’s life because no one else could figure out what was wrong with him. After taking Lila in again to the allergist and speaking to her regular doctor with still no answers, I thought I’d call the doctor I was referred to but couldn’t find the email or notes with his name. And there he appears, apparently taking care of little Ian as well.
The frustrating thing about his visit is he was explaining why they were giving Ian breathing treatments twice a day (the same thing his older sister is doing at home). They’re trying to open up his airways because now his lungs are trapping too much air. This could be because he was intubated and his airways are swollen from it, or it could mean he has some sort of lung disease. It’s too early to tell. Just before Ian’s ready to go home, he’ll do another scan of his lungs to see what the problem is. Let’s hope for the best.
I spoke to Pornchi about Lila and he said to make an appointment for her. He also said persistent cough is his specialty!
We got Ian a Nano and a little speaker to go in his crib for when we're not around. I figured out how to record Lila and I singing songs. It’s a sweet thing that she can do for her little brother and she’s quite the singer! I remember a while back a nurse saying we could do this and we should choose things that we did while he was in utero so he’d be familiar with them; Small World, Jingle Bells and Deck the Halls were top on the list of Lila’s favorites. I added those as well as some children's music, and classical music. This is for him to have while he's awake and we're not there.
This was the first time I've ever sync’d an iPod, which is usually Mike's thing. I really wanted to have our recordings and I knew he didn't have time to deal with it. So he showed me how to sync to my laptop and now he's calling me the DJ ;-) I recorded me reading some books tonight as well. I’ll bring my laptop in to sync it to his Nano as I add things. Hopefully it works out for him and is not too much for him or for the nurses to deal with. I'll ask how it went when I go in.
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