Leaving the hospital, I had so many feelings. Feelings of happiness, feelings of terror, feelings of deep sorrow. John and I had to manage my ileostomy and our newborn, on our own now. It was terrifying. I think I slept for a few days.
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| First moment we got home |
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| I had a PICC line and this was what was left behind |
I was still pumping, trying to get my supply back up. I could only ever get four ounces at a time, and Johnny was drinking four to six ounces every three hours. My body couldn't keep up. With a heavy heart, I decided to comfort nurse and feed him formula to keep him full. The comfort nursing was more for me than for him anyway. The days went by something like this.
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| Pillows, i Pad, latched baby, dog |
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| I was worried about Lucy being aggressive, as you can see, she is terrifying. |
It was time to change the bag. I watched a few you tube videos and gathered my supplies and John and I teamed up on Sylvia. I stood in the bathtub. We were completely in the dark. We had no idea what to do. I had a blister forming around my stoma from the output staying on my skin. We would stick the wafer to my skin and hope for the best, only to wake in the night to the bag leaking all over the bed. Night after night.
One night I stood in the bathtub while my husband cleaned my skin. Sylvia was spraying all over his hands. I had mucus coming from my vaganus. Lots and lots of mucus. I was terrified. I didn't know if it was normal or not. John called Dr. Oyekan, while I had a panic attack in the shower. (When I have a panic attack, I go into worst case scenario thinking. I think I am going to die. I can't breathe. My vision blurs. I violently shake and I feel like my insides are turning themselves out.) Eventually, Dr. O talked me down, and explained to me that just because my bowels weren't connected, didn't mean they weren't working. The mucus was normal, a good thing. I cried and cried. I had never felt so vulnerable, so disgusting, so ugly. I remember asking my husband "How can you love me? I can't even take care of myself! I am disgusting!" he replied with "I love you now more than ever, because you need me now more than ever." I don't know what I did to deserve him, but I am really glad I did it.
We had a follow up with Dr. Harp about a week after discharge and she suggested we see the stoma nurse at Walter Reid Bethesda. We made an appointment and luckily saw her the next day. She educated us on exactly how to dress the wound and how to keep the stoma clean. She taught us how to apply the wafer and bag so that I wouldn't have any leaks, she suggested which products to order. I felt like there was some light in the dark tunnel I was living in.
I was still on a steady stream of Roxycodone. I was taking Motrin, Zoloft, Ativan and Lunesta. I had so many medications, I had to install an app to keep track of when to take what. My diet was very tricky to follow also. I made a smoothie every morning with spinach, greek yogurt and frozen fruit so that I could get my vegetables in, but my blood panels showed that I was becoming anemic. It was really hard to eat healthily when I wasn't allowed to eat anything raw or fresh.
One of my best friends, Justine, started fund raising for us while we were still in the hospital. She raised $5000 for us to pay for home health care. Thanks to all of our generous friends and friends of friends, we were able to hire a CNA to be at home with me while John was at work during the day. I still couldn't lift Johnny and I was still in an enormous amount of pain, so having the help was crucial. My days were pretty much the same, Lay around, feed the baby, mess with the ostomy, sleep.
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| Capt Shakir with Johnny |
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| I was starting to feel like a mom. |
John's mom came for Christmas. It was a nice, quiet event. We had a small tree and hung teeny little stockings.
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| We even got out of the house and made an appearance at my girl friend Chianna's Christmas party! (a very short appearance) |
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| John was so glad to be home. He finally got to rest. |
I was counting down the days until my best friend, Cedar to come visit. She is a mother of three, and I couldn't wait to learn from her and to just have an old FRIEND to hug. She came a couple of days before New Years eve.
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| Johnny loves his Aunt Cedar |
One evening, we sat on my bed and I told her all that had happened so far. She was in shock and disbelief. I was still so heavily medicated that I didn't cry, I didn't really feel anything when I was talking to her. I was still in the stages of denial where I would push away memories and feelings.
Cedar wanted John and I to have a date night. She wanted to babysit. Our first date night since Johnny was born!
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| She styled my hair as I nursed. :) |
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| The date |
The date was actually so bad it was hilarious. We went to one of our favorite restaurants, Columbus Grille, a Portuguese restaurant, and apparently it was Portugal's New year or Independence or something. There was a lady singing and she sounded like a dying cat who had been hit by a truck and then lit on fire. There was a man playing an accordion. There were fat, drunk women in skin tight, spandex, mini-dresses stumbling around barefoot and children running in circles around tables. I thought that maybe I was high from my medicine, but, no. John experienced the same Circus.
I was only getting about 2 ounces of milk at this point. With Cedar and John's help, I decided that it was going to be OK if I stopped nursing. Every time I pumped and only got drops, I would get very sad and I would end up giving Johnny a bottle anyway.
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| This was the last time I nursed. I wept the entire time. |
Time passed so slowly... I still had a Vagnus and an Ostomy. I wanted to fast forward to surgery and get it over with. I felt selfish in thinking that way. I should have just been enjoying every second with my newborn because "Time goes so fast, Cherish every moment", as every person I knew and their dog told me. I couldn't enjoy the time like I deserved to. I was certainly better off than I was in November, but I was still in pretty bad shape. I tried my best to take it day by day.
Dr. Oyekan referred me to one of his colleagues, Dr. Amy O'boyle at Walter Reid Bethesda. He was unavailable to do the vaginal reconstruction until March and she thought I was ready by the end of January. I was uneasy about letting a new team operate on me, but Dr. Oyekan assured me that she was a better option than even he was. I met with her and her team and scheduled surgery for Jan 28th.
to be continued.
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