Thursday, December 16, 2010

Close the shades

Too much. Too much. Too much.

Liam's here. I have anxiety dreams that I didn't really give birth, that I was never pregnant. But he's here and I love him love him more than I thought I could.

He was born and fine then had meconium, then fluid on his lungs. But then he recovered. We were supposed to go home December 6.

But we didn't. Well, I did. Liam stayed in the NICU. Because during a renal ultrasound - which he got because his brother has renal abnormalities- they found a blood clot. On his aorta. From the feeding tube in his umbilical line. They also found his kidneys work well, but they have reflux like Brody did.

So today is his 2 week birthday and he's still in the NICU.

At first I was terrified. The doc told me when I was by myself and it was out of the blue and I started crying and when he left I curled up in the fetal position and sobbed in my hospital room. Not again. Not again. Not again.

Then for a few days I got it together and was grateful they found the clot and hopeful and positive and oh how the universe works because if Brody had healthy kidneys we never would have found the clot, etc etc.

Then I lost my hold on perspective and just wanted my baby home. The NICU staff wasn't communicating accurate or timely information and I just crumpled into myself. Jeremy went there one night and the next day everyone was overly, like Stepford wife level, ingratiating to me. But I prefer that. And suddenly we started hearing of home.

And the last two days have been a flurry of the NICU changing Liam's IV heparin into injectable Lovenox that I will inject at home- cause the clot isn't gone yet- and us waiting for labs and ultrasounds and discharge paperwork. The Lovenox needs to be in such a dose that it has to be compounded. Which means a special pharmacy that doesn't take insurance because "most" insurance doesn't cover compounding.

Today I watched them stick Liam repeatedly trying to get blood for the labs- 3 separate sessions of screaming pain- but I hung in and was stoic & comforted him without breaking down because, hell, I'm a mother who has lived through watching her first born deal with 14 surgeries and countless sticks & blood draws & pain & casts & blood & stitches & scars....

Then they told me they didn't get enough blood either time for the labs so we couldn't go home tonight.

And I still held it together because it is tomorrow, only 24 more hours, and we will be home. I can keep it together. Right? Right?

Then the compounding pharmacy called me. The cost of a 3 week supply of Lovenox for a 6 lb baby? $410.

And that, dear readers, is the straw that broke the camel's back.

Have you ever tried not to cry while talking to a pharmacist? It's quite lowering.

And I have officially left the land of gratitude and entered the land of angry-I hate the world-the NICU is hell-why us-why MY babies-why right before Christmas-why can't anything EVER be easy-why can't we EVER get ahead-self pity is my middle name.

And I feel like I'm going to stay here a bit. Extend my tourist visa. Maybe I'll stay here illegally. I googled how not to feel sorry for oneself. "Be grateful" "get some perspective" blah blah blah.

I'm done. I want my son home. NOW. I want meds covered by insurance that we pay for. I want a happy birth experience. I want to hold my child whenever I want. I want privacy when I care for my child. I want to breastfeed my son without leads and alarms going off. I want to feel like it's Christmas. I want to take my son home when I get discharged. I want to be ignorant of pulse ox monitors and medical expense tax deductions. I want two nurses who have 50 years experience between them to be able to draw .9 ml of blood without torturing my child with repeated, bruising, excruciating needle insertions. Save your fucking apologies and do it right. I want my sons to MEET EACH OTHER for chrissakes. I want to not have my 4 year old catch me crying in the fucking laundry room. I want to scream, and rage, and hug my boys at the same time and not have to worry about their life expectancy and how we pay for all of the medical bills and how we make our sons happy and healthy and secure. I want a longer maternity leave.

I've become a sociopath. I have no ability to feel sympathy or empathy for anyone but me. And I have a great amount of rage. Directed at .... What? Everyone? Everything? Nothing at all?

It's just too much too much too much.

- Posted using BlogPress from my iPhone


lizcraciun said...

My heart aches for you. I've been checking daily for updates, wondering how you and Liam were doing, wondering why he was in NICU, was he still in NICU, etc. I was hoping for better news, and I know you were, too. Life can be so discouraging. I know the only thing that has carried me through all our trials and surgeries and insurance woes is knowing that God both symphathizes with my pain and will give me all the strength to handle it. Praying you will find strength and comfort to make it through, one day at a time.

Hef said...

I love you and I'm sorry and I hate this for you so much. I just want to get to the part where you're all home and happy and this is a fucked up memory because everything works out the end.

Dawn said...

Hi Christine... this is your long lost friend, Dawn from Denver. I just popped on the RPL board and saw you had a baby and was reading your blog and had to comment on the compounding pharmacy. There are 2 in Denver that I know of - both are Walgreens, so they take insurance! :) One is off of Leetsdale and Quebec and the other is way out in Aurora - smokeyhill and Himalaya. We have had to do lots of compounding for Ayden when he was young. Just wanted to let you know!
Hope you get to bring Liam home soon!! ((hugs))

Christine said...

Thank you friends- Dawn- great to hear from you!