Recovery Day 11

Well, the last few nights Ellie has had major drainage when she wakes up in the morning. I can see it on her sheet in her bed and on some of the blankets. It is supposed to be a reason to contact the surgeon but since he saw her Thursday and gave her the all clear, I can't imagine something has gone horribly wrong within 24 (now 48) hours. Of course her mood swings have been pretty violent. We love when we see "happy baby" again, but more often its crying, inconsolable baby. Baby who was up between midnight and 2 a.m. last night. To be fair, her sleep/eat/medicine schedule was completely off yesterday. She woke up at 6 a.m. crying, so I gave her medicine and she went to sleep- no food. She woke up at 9 which meant I could feed her but she couldn't get medicine for another hour, and if I wanted to wait for it to kick in before feeding her that's another 30 minutes. That runs real close to her nap time. So all day it was a math game against the clock. Today seems to be a bit better. She enjoyed a short walk in her stroller, and we were able to properly match up food and medicine times. She took a very short nap though so she was a little cranky this afternoon but as I sit and type this she's in hour 2 of her afternoon nap. In any event, I'm still desperately looking forward to the day no medicine is needed, my happy baby girl is back to her old self. And because I'm going insane from the incessant crying at all hours, and being caged up in the house it had better be soon. Her pediatrician appnmnt is Monday. Hopefully we'll hear more good news then.

Day 9- the surgeon's office

While yesterday was a shining beacon of what's to come, I did not cancel the appointment. Hubby insisted we wait until the night, if it went well we could cancel in the morning, if not we will go (and we means Ellie and I). She woke up at 2:30 a.m. and cried for 30 minutes. I'll be honest, I gave her the Tylenol with codeine. 2 a.m. is not the time for a fit. Sorry. So we went to the surgeon to see if there was some underlying issue that was causing Ellie frequent pain. There is not. Because her palate was wider than most she still has raw spots that require more time to heal. Other than that her mouth is healing perfectly well.

While in the waiting room I heard two other parents of children requiring cranio-facial plastic surgery talking and one asked about the "ten pound threshold." He made it sound as though that was the weight to be reached in order to have surgery. That can't be, I thought. Ellie was over 10 lbs when she was threatened with the G-tube.

In any event, to other moms and dads of palate recovery kids- just be patient. I know its hard. I know you're tired, and you're really over the whole thing. It gets easier and better each day, even if its just by a smidgen. But I won't fault you if you get crazy and want a follow up with your surgeon within a week hahaha. My advice would be to wait until day 10 to make the call, though.

Day 8- Sweet relief!

It appears we may be on the upswing. I hate to jinx it but its been an amazing morning and its only 10:30. Ellie only woke up when she was in an uncomfortable position last night. To be fair, it may have been fewer times if I had realized sooner her hair barrette went into her diaper. Her only cries were for hunger (she ate 4 ozs) and when she had a bad poop (which was still good for me b/c she finally pooped)! She's been a sweet girl all morning, helping me make her zucchinis for lunch and playing with her toys. Mornings tend to be her worst, if I remember correctly (and I really can't say if I do or not because my mind is mush), so we could be in for a good day. I even got to eat breakfast for a change! I've been listening to music for the first time in... who knows.... maybe I've hit a manic patch LOL... in either event I haven't decided if I'm going to cancel tomorrow's visit. I may do a last minute cancel, which is rude but I don't want to go in for no reason. I will keep updating.

Day 7, misery

The last few nights Ellie has woken up every couple of hours to cry. I called the surgeon and explained that she does not appear to be getting a little better every day, as is expected. I had also noticed a stitch hanging down in her mouth (dissolveable, right). His assistant asked a million questions and said I was doing everything right. Great, which means I'm a fantastic mom who's exhausted by a screaming child on whom I've expended all possible means of calming and healing. Read: there is nothing left I can do to stop the screaming. The stitch disappeared though, either dissolved or went back to the whole from whence it came. In either event the only thing the assistant suggested was switching from Tylenol w/codeine to regular Tylenol as the codeine can sometimes upset the baby's stomach or even make them hyperactive. I think it goes without saying that was a fail since I began this blog with stating how she no longer sleeps through the night. I called the surgeon this morning, we go back Thursday. Now, at least I have something to "look forward" to, so to speak. One of two things is likely to happen- (1) she'll heal up completely the morning of the appointment so it will wind up being a complete waste of time while expending my little precious energy and straining what's left of my nerves to get there on time, or (2) he'll have something useful to make this nonsense end.

In either event this is driving me insane. Every time I think she's getting better- she sits through a feeding without wailing, she smiles at me, she plays with her toys- my optimism is DESTROYED by the screaming and crying that inevitably ensues shortly thereafter. This is also depressing the hell out of me. She's not healing like other babies from a generally typical surgery. She is constantly miserable and I can't do anything about it. I've already done all I can and it's all I continue to do and it's not enough. And while I'm busying focusing on her and trying to save my sanity I'm witnessing so many of her playmates hitting milestones we can't do right now. It's hard to teach crawling in arm restraints. She can't talk when her mouth is paralyzing her with pain. She doesn't even want to sit alone and play anymore, only be held and rocked. I feel cheated. I feel like I've made a mistake. I feel betrayed. To say this is not how its supposed to be is an understatement. F*ing Holland.