Friday, November 13, 2015

Jack: 7 Months


Well, things have been interesting around here.

I'm in therapy. Hubs is in therapy. We're both on anti-depressants. (Mine seem to be working a bit better than his.) We're also both in PT twice a week for our backs. My parents left last week and I've been cobbling together help from friends and family every day since. It has been hard for me to take care of Jack on my own because a couple weeks ago I pinched a nerve in my neck and twisted funny at the same time, knocking my top 8 vertebrae out of alignment. That was fun. Thanks to PT I'm definitely on the mend and can now hold Jack (and lift him in and out of his crib) so that's a huge improvement. Next week we're going down to just Nanny J in the mornings and all me in the afternoons through bedtime.  Hopefully I'll be ok physically at that point. I'd be lying if I said I wasn't a little nervous. Luckily though, we have a lot of loving people in our lives that are willing and able to help if I say the word.

Mentally/emotionally it's been a roller coaster.  I mentioned in a previous post that Hubs has been struggling with paternal postnatal depression, anxiety and OCD. It got really bad (and quite scary) for a while there. Turns out he had a bad reaction to the first med he tried so once he switched he got a bit better.  Then we got some tough medical news about Jack (more about that below) and he really spiraled downhill again. That one lasted for a while.  I don't have the energy to write about the hard times except to say that when it's hard it is REALLY REALLY hard, but luckily he seems to be coming out of the worst of it again now.  Thank God.  But during the brief respite of relief I think I was able to finally take a breath and focus a bit more on myself and it was then that I realized just how bad I was. I realized I've been fighting PPD (post partum depression) and I reached out and got some help.  Through therapy I'm now discovering I've been depressed for a long time, starting probably 2 years into infertility and extending through losing Petey, grieving, all the difficulties that go along with being pregnant after loss, receiving the shocking news at the end of my pregnancy about Jack's dwarfism, and now adjusting to life not just as a new mom with a baby but as one with a baby with special needs.  My therapist made a point to say that I have been through multiple traumas over the past few years. I never thought of it that way but she's right. I'm working on being okay.

As for Jack, he's doing awesome. He is such a sweet baby and really is the light of my life. The medical news I mentioned previously was two-fold: We happened to find out on the same day that 1) he'll need to have surgery soon to place ear tubes (it's scheduled for the day after Thanksgiving) and 2) his sleep study results came back and confirmed that not only does he have obstructive apnea (which we expected), but also central apnea which is the one we were hoping wouldn't be present.  Unfortunately the episodes of central apnea were much more prevalent than the obstructive so it's unlikely he'll grow out of it (central = neurological). This past Monday we went to Boston Children's Hospital yet again (quickly becoming our new home away from home) and met with a pulmonologist and the head of the sleep clinic. Jack is now set up with oxygen at night which will hopefully help him breathe better and more consistently. Right now he is not in a C-PAP mask (likely because he is so little) but in three months we have our follow up appt to evaluate the effectiveness and have a repeat sleep study to see if he's receiving enough oxygen through just the nasal cannula.  We haven't started the oxygen yet because we are still waiting for a part to come in but it is very weird to have respiratory equipment in his nursery now. I am not looking forward to having to try to wrangle him into this thing now every time he sleeps and honestly I'm going to be even MORE concerned about him at night now because I'll be worried he'll get the tubing wrapped around his neck :-(

As for the ear tubes: It's a routine surgery for lots of little kids so normally I wouldn't be concerned about it but he does need to go under anesthesia and kiddos with dwarfism often have complications with anesthesia. This will be his first experience with it so I'm not sure how it will go but I'm hoping for the best.  (I'm trying not to think about it much honestly.)

I feel like I've been taking the news in stride but Hubs hasn't been able to do that. He is in much worse shape than me and with every additional thing he just feels overwhelmed and extremely negative. He's having pervasive catastrophic thoughts so when I told him that Jack's study came back as positive for obstructive and central apnea he can't see it as: "Ok, we'll meet with specialists and figure out what will help him breathe better at night", he sees it as: "Oh my god, there's another medical issue with our child and he could die in his sleep and since it's central apnea he will have neurological issues and likely has spinal compression too (since central apnea can be a marker for compression) so he'll have to have back surgery and he'll probably have complications with the anesthesia and and and..."  I am sure it is exhausting. The anxiety reduces him to a paralyzed crying heap of a man who is stuck in his own head and unable to see his way out or gain perspective.  It's hard. And it's hard on me too. I am learning mental illness is a scary and unpredictable beast. It's an ailment - like a broken arm for instance - for which you need treatment (therapy and meds) but unlike a broken arm, you can't SEE your progress. You can't see it heal in tangible ways. You don't know what will re-injure you. You don't know how much longer it will take to be able to be back to full strength again.  It's tough. And I am already dreading the next "bad" news we get because I fully expect for him to spiral downward again. I just have to hope that he's learning tools in therapy, as I am, to be able to better handle the things that are thrown our way.

Our relationship, our marriage, is very different right now because he is very different right now.  He's not himself. And I am different too. It's impossible not to be now that Jack is here. And I think it's also impossible not to be after the things we have been through. It reminds me of this quote:


I think we'll be okay though. We're working through it; in our own ways and together. It will be a long process though. In the meantime I'm taking one day at a time and enjoying my little guy as much as I possibly can. He is just amazing.