Best-laid Plans

So I had every intention of keeping up with this. Let me tell you how that plan went awry.
I went on maternity leave on January 15th out of sheer exhaustion and in a great deal of pain due to a pregnancy-induced condition in my hips. You would think that this would give me lots of time to blog, but instead I went into nesting mode, tidying the house, prepping freezer meals, getting errands run, attending my multitude of doctor's appointments.
Nearly a month flew by...my due date came and went. I was in false labour from January 26th (so we didn't end up planning anything serious for my birthday just in case). Finally, on February 11th, labour really picked up. I got some sleep that night, but by early morning, it was looking good. It kept intensifying until we finally decided to go to the hospital around 10:30am. Labour moved along well and my wee boy was born at 2:18pm.
If you followed my other blog, you'd know that I am a carrier of nephrogenic diabetes insipidus. My wee boy has NDI and has the distinct honour of being one of the earliest diagnosed kids that our doctors have seen. Normally, symptoms show up around day 4 of life, but Orin was diagnosed on day 2.
Here is a summary of the first few weeks of Orin's life as posted on ThatBoard:

Orin is three weeks old today. He was diagnosed with nephrogenic diabetes insipidus on day two. The earliest diagnosis of this condition in recent memory at this hospital. He has been a mostly permanent resident of the NICU since then.
The long and the short of the condition is that his kidneys don't concentrate his urine properly, meaning that he ends up with a build up of salt and can dehydrate very quickly.
So for Orin, this has meant a stint on IV fluids. His first one was in his hand. That was rough, especially since the nurses told me that it took several attempts. When his body started rejecting that one, they jabbed him another 6 or 7 times and ended up putting one in his head. I cried when I saw him with that one. His body started rejecting that one within a day so they moved it. Another in his head. One of the worst moments of my life happened with this IV when, in a fraction of a second, he got his finger wrapped in the loop of tubing taped to his head and started to pull. Luckily, Dave and the nurse intervened quickly because I became mentally paralyzed. Between exhaustion, stress and my fear of needles, there was nothing I could do, my mind went blank and I just started to pace in circles while my baby screamed. :'(
when he blew out the 3rd IV in less than a day of getting it, the decision was made to put a central line in. They were hoping to go in through his arm. The second choice was his belly button in one of the major arteries - very dangerous because if it came out, he could bleed out very quickly.
Of course, they couldn't get it in his arm, so belly button it was. I cried really hard when I saw him after this. A nurse cried along with me because she said that she could see my heart break when I saw him. He slept for nearly 6 straight hours after the procedure because the stress of it wiped him right out.
This central line meant my sweet boy was on limited access because we didn't want to jostle him about too much with that line in so he came out for nursing and that was about it.
Things are a little blurry at this point, but I think he had the line in for 4 days, at which point it was felt that he was out of the real danger zone he was getting into and we could start working on methods of getting fluids into him that would work at home.
Since then, we have been trying various combinations of medications (he is on three right now), salt solution, sterile water and breastmilk in our attempts to get him gaining weight. Unfortunately, none of these methods has worked yet. We have been sent home on a couple of day passes, which was absolutely wonderful.
Unfortunately, we are in hospital again because he is still not putting on weight. Yesterday the decision was made to put a feeding tube in to try pumping water into him that way. If he hasn't put any weight on by tomorrow, I suspect the paediatrician is going to put the IV back in. Just the thought of it makes me feel sick and teary because it feels like we are moving backward rather than forward :(. What's more, the paed wants me to start supplementing him every second feed with formula because he is worried about the lack of calories in the water. I have been saying the same thing since they started pushing water into him before BM, but no one listened to me. Now, my milk supply has diminished some AND Orin is getting fussy at the breast because it is slower flow than the bottle he is taking water in. All that said, supplementing with formula does not work for me at all and is entirely unnecessary according to the specialist at the IWK and the neonatologist here, so I have asked for a few days of making the breast first choice again before we take any other action. I have purchased low flow nipples for the water bottles and fenugreek in case I do struggle to keep up with him on my own.
I found out from a nurse that the paed (who, I admit, is very knowledgeable, but is lacking in bedside manner and creative problem solving skills which are needed with a condition as rare and challenging to manage as thus) foresees Orin being in hospital for another two weeks. I could really use some positivity to get us out sooner. I am being allowed to stay because he is breastfed exclusively and pumping doesn't work for me (I get abou half as much with the pump as I would estimate the baby gets) and while I am very grateful, I am missing my home and family like crazy. Isabel has changed so much over the last 3 weeks - she is in a big girl bed, she is using the potty, she uses personal pronouns consistently and is just SO bright. It makes me really sad that I am missing it :(
Anyway, that is the gist of it. the absolute worst things about this are missing Isabel, what this seems to have done to her trust in me and the feeling that Orin may never be *mine*. It still feels like he belongs to them and I am just a bystander waiting for them to hand him over. I certainly don't feel like his mom given how little I can do for him. :(


The good news is that, as soon as the feeding tube went in, things improved IMMENSELY:
When we started the NG tube, we struggled to find the magic combination of water and caloric top-up (20mls of formula or BM depending if I could pump or not). He gained and lost at random. Then, one day, we found it and he has been gaining since then. For instance, in just over 4 days, he has gained over 320g. That's nearly 12oz for all you imperial folks out there. Impressive, given that we realised on Friday that he'd grown 1 1/2 inches in length since birth!
While it can't be a long term solution, because the NG tube is working so well, we are leaving it in for a while longer rather than trying to reintroduce bottles again just yet. This will require a ridiculous schedule that will mean we really won't be able to go anywhere or do anything until that changes but we will manage.
The great news is that the doc is going to send us home this week! I am so ready to go home. I can't say that I won't see the inside of this hospital for a long time, as much as I would like to, because we will have to come in for daily weigh-ins and regular bloodwork for a while yet, but that is perfectly alright with me.

Since that update, we've been home for about a month. He has continued to gain like a fiend. We have been going to the hospital for check ups on a regular basis and the doctors are SO pleased and impressed with his progress. We are doing so well at home. We've settled into our routine. He is such a wonderful baby. Isabel is such a wonderful big sister. The best part, Orin is now beginning to take water in a bottle, which will mean the eventual removal of the NG tube!

Alright, I feel better having updated you all. I will post a more detailed update of what we've been up to since the hospital, but for now, I hope you understand why I haven't been blogging.