Vivian’s first EEG was done on Tuesday.
Ben is unfortunately sick with a cold/cough thing, so we thought it best he didn’t go to the hospital to make anyone sick. This meant it was just me and Vivian headed to the hospital. She cried the entire way there :( It was really rough. She cried the entire 15 minutes I had to wait to get a parking spot. When I finally got her capusle clicked into our snap’n’go stroller system, she passed out from crying so much. Then of course, once we got into the appointment, she screamed the entire time they fitted the special cap on her.
The poor technicians were just beside themselves (and me too at that point), and started asking me if I’d tried this and that. I had to tell them that no, she wouldn’t take a bottle like this and that no, she wouldn’t be interested in her pacifier when she was screaming her head off. It took about ten minutes for me to calm her down again and then she passed right out on my shoulder, which isn’t something she normally does at all. It was definitely sleep from too much crying, not from being soothed or calmed. I hate it and it makes me feel like a bad mom when it happens :(
We won’t know the results for a few more days, when we are due back at the hospital at some point to see the neurologist again, and to get Vivian’s blood pressure checked.
We finally were contacted by our early intervention provider, The Champion Centre.
We should have been referred on to Early Intervention the week Vivian was discharged from hospital (first week of July), but due to whatever crappy reason, be it shit timing or lack of good procedures, we only got referred last week and there is a 3-week wait at all of the four providers in Christchurch. 8 weeks of no support there for us and Vivian, after all we heard about was that our early intervention provider would help with this or that. I am angry about this. I am angry about a lot of things that have happened in hospital and things that should have happened in hospital but didn’t. It seems like a lot of times we have fallen through cracks in the health care system with Vivian and she’s not even 3 months old!
We had our initial meeting with someone from Champion Centre yesterday and will be going to a meet & greet on Monday to meet the team of specialists that will be working with Vivian in the months and years to come. These include a physiotherapist, a speech and language therapist and an early intervention teacher. It’s a lot to take in, and I’m not sure we made the right decision. We could have chosen to have a home-based provider, and I’m starting to think that might be the better way to go because Vivian is so easily thrown off of her feeding and sleeping if we have to take her anywhere. They will most likely do the first few sessions with Vivian at home due to the prednisone’s immunosuppression side effects, but after that we will need to take her in once a week.
Ben and I are running really low on energy this week and with Ben sick it’s been really hard on both of us. He’s been absolutely amazing even though he feels like death warmed over and taking extra precautions around Vivian to make sure she doesn’t catch whatever he has. Fingers crossed she doesn’t get sick! We have appointments every day next week, so I can’t afford to get sick either.
We started Vivian on the prednisone Monday evening.
It tastes sweet at first but then has a horribly bitter aftertaste. I think she’s starting to show some oral aversion now…she used to be a hardcore pacifier fan while falling asleep and now she won’t take it after having prednisone, unless she is very, very sleepy. She spits it out and grimaces, or grimaces if you even put it near her mouth.
Her poor tummy has been very sore yesterday and today- she has started spitting up (spilling as New Zealanders say) a bit and she’s never done that before. She is also crying a lot more than usual, and she is already a baby who cries *a lot*.
You can just tell it hurts. She brings her little legs up to her stomach and screams. And it’s messing with her bowel movements as well, giving her horrible gas and painful bowel movements. Not fun at all. And this is only the end of day 2. I don’t know if we can take 6-8 weeks of this and still have a child that is willing to eat on her own. :( Her intake volume has been down the last two days due to her not feeling well. I am doubtful she will gain weight this week at the rate she’s going and the amount of crying wasting her calories.
I wish we didn’t have to syringe any medicine into her mouth at all; this makes medicine number four, and we have to give it to her four times a day, with food, which isn’t going to create an awesome association with her food. I thought we might be able to disguise the prednisone in some breast milk, but it’s got too strong of a taste, and some parents of IS kids have said their child refused to take a bottle after starting on prednisone, so my idea of putting it in a bottle is not going to happen.
Vivian is exclusively bottle fed because she refuses to latch for breastfeeding. My c-section, her month-long stay in NICU, the pacifier being introduced (without our permission) by hospital staff, and all these medications being syringed into her mouth have caused some nipple confusion. And my letdown isn’t fast enough or long enough for her, so she prefers the bottle. If she starts having a bottle aversion, we’re really screwed.
All of the above being said, we still managed to get a few smiles from her today and she had a long conversation with Ben after he discovered she likes it when he makes monkey noises at her. :) I hope we can still get at least one smile each day while she’s on the prednisone. It looks like it’s going to be a hard couple of months ahead for us. I don’t know how other parents get through it. One day at a time, I guess!