Hospital frustrations

Madeline is 9 days old today. And for all the people asking, we decided on the spelling "Madeline". We always agreed on that spelling, but I had a freak out moment in labour where I asked Bernard "What do you think about the spelling Madelyn? I think I like it better." Actually, I prefer the more "traditional" spelling Madeline, but I don't want people pronouncing it as "Ma-de-Liiiine", and "Madelyn" is spelt more like it sounds...

Today when I went to visit our baby girl, I was happy to find her CPAP free!! They put her on a bit of oxygen though, but it's so nice to be able to see her face better now. Now there's just a very thin tube under her nose, that's all :) Unfortunately I forgot my camera though! She's looking really good though and is pretty stable too.

Yesterday I forgot my camera too and was kicking myself because yesterday she was so alert and awake my entire visit. And also yesterday was my first time to see her with the hiccups, and also to see her sneeze :) Silly little things I know, but when I only see my daughter for such a small amount of time, it is actually quite special. Yesterday as well, she was spitting up some milk so she even smelt like a regular newborn :) 

I've got a few frustrations with the hospital at the moment. The first frustration is their policies on bringing in the breastmilk. I understand that they just want to make sure that it's all safe - but they don't accept breastmilk storage bags, only bottles. And they only accept frozen milk as well. And it's one bottle for one feed only, they'll throw out any remaining milk. 

I'm currently doing great with pumping, I'm pumping about 800mL a day and Maddy's only drinking 480mL a day. Yesterday she was drinking 60mL eight times a day, so I was putting around 100mL into 8 bottles, knowing that they'll throw out the extra 40mL but at least I know they have the milk there if they wanted to increase her feedings.

Anyway, I went in today and the nurse told me that they're now feeding her 40mL twelve times a day. So what that means is that in the past 24 hours, they've given her the eight feeds that I sent up pouring out 60% of the milk, but then also feeding her another four formula feeds. I know it's just a stupid thing, and that formula isn't going to kill her. But I hate knowing that I have plenty of milk that she should be drinking that would be better for her than formula, but because of the hospital policies, they pour out that milk and give her formula instead. I'll have to bring up 12 bottles a day now, and then when the pediatrician changes the system again, it will probably mess up how much milk I've been putting into each bottle, and then they'll have to feed her formula to make up for it. It's crazy... I know I shouldn't let it bother me but when I'm pumping for hours each day, waking myself at 4am to pump, knowing that this is the ONE thing I can do for my daughter, it really gets on my nerves that they're not giving her that milk and pouring it down the sink instead. 

My second frustration at the moment is that the doctors are at a headlock as to who is going to do the next tests on Maddy. She needs two things assessed - her airways and her cervical spine. The ENT wants to do the endoscopy to see her airways, and the orthopedic doctors want to do an MRI to assess her cervical spine. For both procedures, she will need to be sedated by the anesthetist. The ENT is refusing to do the endoscopy until the orthopedic doctors assess the spine, the orthopedic doctors are refusing to do the MRI unless Maddy is sedated, and the anesthetist is refusing to sedate Maddy until she knows the state of Maddy's airways and the results of the endoscopy. So no one wants to make the first step there. 

The pediatrician has been trying to get those three departments to sit down together and find a workable solution, but so far he hasn't had any luck there. The head of the NICU department is away at the moment but will be back on Monday and the pediatrician we've been talking to is hoping that he'll be able to help get it all done somehow. 

In the meantime, we're pretty much just waiting for the results of those two tests. I asked the doctor when we'd be able to hold Maddy now that she's off the CPAP, but we can't until we know the state of her cervical spine. I asked him when they are going to try feeding Maddy by mouth rather than by the NG tube and he wants to know the results of the endoscopy before they do that. 

I asked how much longer Maddy is likely to be in for, and his vague answer said that they had no immediate plans for her to come home. I think it will probably be at least another 2 weeks.

So that's where we're at right now. Maddy's getting stronger and looking good. She's getting more alert. But we're just waiting on the results of a couple of tests before they can start thinking about managing her condition and sending her home with us.

Please pray that the doctors can work together to find a solution so that Maddy can get these tests done soon, and that the results of the tests will be good so that she is able to come home soon. I really miss her...