21 January 2017

My life now

Since the last time I posted, my life has become very different. Most of the people that read my blog know me via other forms of social media, and so they know that, at 9:29PM on October 7th, our lovely little boy, Logan James, was born. They had wanted to try to keep me pregnant for another 5 weeks, but my blood pressure soared out of control and he was born to save my life. I was all by myself; Left-brain had been in to visit, but he took Someone Small home, and the call came just when he walked in the door, 45 minutes away. He wanted to know what he should do, I told him that he wouldn't be able to get back in time, and he couldn't come into the OR with our 4 year old, so it was what it was.

The anaesthesiologist was my birth coach. The entire high-risk staff was awesome. My OB was able to do the c-section for me; he teaches at the hospital once a month and it was his night to be there. Someone was watching out for me. The nurses were talking to me and letting me know Lolo was OK. And we'd get through this. They were actually playing music and talking about their weekend plans while everything was happening and it was bizarrely comforting. This is what that team does and they do it well enough that they can chat about the weekend.  

 He was 2 lbs, 4 oz, small, but not with any real health issues. Since then, he has been in the NICU, growing and getting stronger. He did have some issues coming off the nasal cannula and the caffeine they give preemies, but those resolved by Thanksgiving. He is now having some feeding issues. The doctors are still trying to decide if they want to send him home on an implanted feeding tube or if it's just a matter of waiting. He also has reflux issues, which could be adding to the problems--the NG tube he is on now holds his stomach sphincter open and allows acid to go up and then when he eats, it irritates his tummy. Feeding is a slow process for him and stresses him out. He is doing a little better now that he is on some reflux meds, but it's a slow process.

 I have been off work since I went into the hospital.  8 weeks of that was healing from the surgery, but I had an addition time that was unpaid. A lot of parents with long term NICU patients will go back to work, and then take the rest of the time when the baby comes home, but I did it all at once. I was SO sure that he would be home by Christmas that I didn't want to go back for two weeks, then go back out for 8 weeks. So I took the time, made sure we had a beautiful holiday ready for him. We were even trying to figure out how to get Christmas pictures of him, would it be possible to get them before Christmas, or do them after the holiday and pretend. And then he didn't come home. And it was devastating. His presents were still under the Christmas tree when I took it down earlier this week. One of the NICU nurses gave us a tremendous gift of photographing him in a Santa hat and wintry ensemble, so we have our Christmas photos. It was a little piece of "normal" and I treasure that. 
They have all been so kind to us, even when I walked in that room, looking like death warmed over, sat by his warmer, and cried because the future is so unclear, and I just want to know he will be OK. Several times I have had to remind myself or have friends remind me, to "Be still and know that I am God." This is Lolo's journey, this is how he was meant to come into the world. I am so very grateful for the time I have been given to sit with him and enjoy him. I am so proud of him, honored he was given to me to love.

I go back to work next week. I had the legal option to leave my job to take care of my child, but we need my income and benefits, so it's back to work.  It is going to be a hard transition; I went from 60 to 0 overnight when I went in the hospital and now back to 60.  At least for now. My career stuff is up in the air as well. I am trusting that this is happening for a reason.

What kills me the most is that all this has happened because of a disease no one talks about. Before this, it was something that killed Lady Sybil on Downton Abbey, not something I thought would affect me. A lot of people we talk to since this happened have had family members affected, but no one can give a good explanation for why it happens.  75,000 women and 500,000 babies die from pre-eclampsia every year and the best explanation I could get from a medical person was that my body was allergic to the placenta. One doctor even asked me if my children were with the same father. YES!  There isn't even a decent treatment for it other than delivering the baby, which, as we see, isn't really a great option when you are only 28 weeks along in pregnancy. And I know it has to be frustrating. Obstetricians work to get babies in the world healthy and safe, and to see a tiny person fight to live has to hurt. 

So I decided to chronicle our journey on Facebook. I post Lolo's pictures. Even the early ones that are painful to look at because he has this worried look on his face and he is so tiny--his head fit with room to spare into my palm.  I want to bring attention to this, I want to show our journey as we recover from this awful change in our plans. We survived pre-eclampsia twice, it has to mean something. We didn't live to be the same as I was the day before it happened.  My hope is that maybe someone sees this and it spurs them to be a researcher and figure out why it happens. Because no mom should have to wait three days to hold her baby to keep him from having a brain bleed. No mom should have to choose her life over her baby's health. No mom should have to worry that, when she walks out of a NICU, she won't see her baby again.

So that's me in a general sense. I have been stitching. I will keep stitching. Tomorrow, I will probably post something stitch, I just wanted to explain where I have been and what I have been through.


Robin in Virginia said...

Rachel, you and your family are in my thoughts and prayers. Thank you for sharing Logan's (and your) story here. I hope his feeding issues are resolved so he can come home. Thinking of you.

Sew Wilde said...

Congrats!! Logan is a cutie. I will pray for you all.


Justine said...

Congratulations - what a gorgeous little man. Hope he can come home soon.

Astrids dragon said...

Oh wow, I didn't realize he came so early. But look at him, what a cutie! Prayers for Logan and your family, that his feeding issues are free and clear when he comes home.

I do my thing and you do yours. I am not in this world to live up to your expectations, and you are not in this world to live up to mine. You are you and I am I, and if by chance we find each other, then it is beautiful. If not, it can’t be helped--Frederick Perls