Two days ago + yesterday morning would've been "All falls down" I feel like a house of cards. You take one away and everything else just crumbles down with it. I had literally just got done writing an email to Kate about how Dennis and I are very good at handling stress and how well we talk things through when - BAM - we just exploded at each other! It has been coming since we were in the hospital. We were forced to be in the same room, with this awful situation for 10 days straight. I mean, that's not so bad if you're at home but when you're in the hospital with nowhere to go, a sick child, and hardly any sleep...well, that's just asking for a volatile situation. But, we handled it pretty well at the hospital.
It was coming home that got to us! We even handled it for the first week. But then little things were starting to get on our nerves and I really can't even pinpoint exactly what they were. I know for him, he said I was "getting on his case" about everything he did with Lillian. And yes, I admit, I have a small control issue when it comes to her - especially now! But I think most moms do, and especially stay at home moms who are with their child every second of the day. I know what she likes, I usually know why she's crying, I can feed her without getting a bottle out etc. So he definitely exploded on me about that and I kind of exploded on him to get back to work. He's been stay at home doing work which was okay but I really just need some time away from him! And work is a nice little break. It's not too long and not too short.
Anyway, we did something we haven't done that I can remember in 5+ years of being together - we went to bed mad at each other. Ugh. I can't believe we did that. And in the morning it wasn't any better!! In fact, it was probably worse. Neither of us wanted to apologize about the explosion the night before (in front of my mom and sister!)
To make a long story short, We worked it out. I ended up calling him while I was out at the same time he was texting me. I apologized, so did he. We hate being mad at each other and we really need to be on the same page and be a solid support for Lillian AND each other.
Wednesday we went to Lillian's endocrinologist follow up and she now weighs
10 pounds 4.7 ounces !!!!
I was just hoping to shoot for 10 pounds! I can't believe it. That's a lot of weight gain in one week! The endocrinologist was happy with how things were looking. We have to get some blood tests done again when we go in on the 4th to our pediatrician for a weight check. And she did up the HGH but we started at such a low dose. I think it will help her blood sugars stay up and stable the whole day instead of lagging off a little bit in the afternoon. So I'm happy with all that and we don't have to go back for another 2 months!
Formula has been working out very well. It's actually given me a break and I think it's helped Dennis feel like he can do something more when she's hungry and I'm not readily available. I'm guessing it's also helped her bulk up a little bit too :) When she gets to a healthy weight I believe we will stop and go back to exclusively breastfeeding. The endocrinologist said to hold off on solids and wait until 6 months and then when we start, to make sure to check her sodium levels pretty often to make sure it's not throwing anything off. I'm fine to wait on solids since we were going to wait until 6 months anyway.
Things are also starting to get semi back to normal...or at least as normal as they will be now. I have learned that we can adapt very well to change. Lillian is now getting back into naps most days (not all days ugh!) *She's napping very nicely right now!* She's been sleeping so much better at night, no more waking up with that heartbreaking cry - which leads me to believe she was just overwhelmed/stressed/insecure after being in the hospital and coming back home. But she, too, has adjusted back to life very well. And I'm starting to learn to get back out of the house. I just have to make sure I have a good way/place to nurse or a bottle of formula, glucameter, emergency meds (though I doubt I'd need them, I have to carry them) and whatever medicine she'll need while out (I already forgot one the first time I left home!)
I have decided not to let this condition control mine or Lillian's life. That's not fair to either of us.
The last thing I wanted to write about was this: How am I supposed to tell everyone about Lillian's condition? Part of me wants to tell the world about it. Part of me wants to stay Eff them, they don't need to know anything. And, part of me is just going along with what Den and I decided (to tell them just about the endocrine part and leave SOD out of it.) Of course I'm telling my best friends and people close to us about SOD mostly because I need to vent to someone. Part of me also wants to do what Kate did on facebook and just put up the "Welcome to Hollands" story and let people come to me if they wanted to know.
It's hard because so much of it is "wait and see." We really only know for sure about the endocrine part of the condition. We have no idea about her eye sight, mental development, or even growth. I guess I should just play it safe. People can get overwhelmed with "maybe's" and it really drives me crazy when people say, "oh well, those COULD happen, it's not a definite." Well, try living your life day by day with these could happen's hanging over YOUR head. I'll just tell things as they happen. That seems like a good plan?
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