Hubby drove to STL in the lead with my parents directly behind and mom-in-law behind them. There were a couple moments where I wasn't certain we were going to live to see STL or Lilly again. You see, Hubby is a tech junkie though he would and does argue. When he worked from home I felt like I was competing with his laptop for attention and now that he has an Iphone, the kids and I compete with it for attention though he's always been bad about his phone. Before they got really fancy and before there was Facebook, he was talking on it ALL THE TIME. Anyway, this particular evening the road was competing with his phone for attention. Finally at the halfway mark when we stopped for a restroom break, he had also scared my parents badly enough that I took his phone away.
About an hour outside of STL I got a phone call from the resident doctor, Dr. G. She let me know that Lilly had arrived, she was all tucked in and they had run a few preliminary tests that showed a heart murmur and an enlarged heart. She said to be safe and they would see us soon. Just as I was finally feeling relief that we were getting close, I was shattered. Not only was my baby going to need surgery for a bum hole, she had a hole in her heart and possibly a too big heart? That couldn't be good. So what, open heart surgery too? My mind raced with all the terrible possibilities. When Hubby had asked the flight team what we could be looking at, they did say heart problems often accompanied her particular birth defect. Also, spinal problems, brain problems, kidney problems, and hip problems. Oh for the love! Okay, don't panic. Let's just get there. I knew I would feel better when I saw her. Or so I thought.
We arrived in STL sometime around 2am. We found parking, got visitor badges and proceeded to the NICU. We could only go in 2 at a time so Hubby and I went in. We were directed to her "suite" (nice). When we walked in, she was lying on a newborn bed with a warmer with all kinds tubes and wires. I lost it. I was so relieved to be here with my baby, yet so upset because this was not how I had imagined our first night in the hospital. And I was hurting for her. The nurse came in behind us and hugged me though I don't think she understood that a great part of my crying was relief to be there with my baby and not just sadness and shock. We headed to a sleeping room they had saved for us to get about 3 hours of sleep and our parents took the kids to their hotel rooms at the hotel that adjoins the hospital.
Sore doesn't begin to describe my body the next morning. Having pushed out a nearly 9 pound baby and then hitting the road shortly thereafter and trekking across this hospital. Ouch. I took a long hot shower and it was amazing. We went to Lilly's room to see her and hang out for rounds. Upon entering the room I saw my baby laying there, with two new tubes in her and there was blood around her tummy from one of the tubes. I lost it again. I expected to find her just like I had left her only a few short hours ago and instead, they had made my baby bleed! I know medicine and I knew there was an excellent reason but I couldn't help it. The nurse walked in and hugged me. It was a different nurse from the previous night and she said the other nurse had said I was emotional. Excuse me?! No I'm not. I understand why my baby's here and I'm fine with it. I'm just glad I'm able to be here with her. I was indignant. A few days later, when I was less on the edge of my emotional cliff I made my peace with having been "emotional" those first couple of days. I mean, hello! Of course you're going to be emotional anyway when you've just given birth not to mention if something goes wrong. Rounds were pretty uneventful and the nurse made me go eat. She ended up being my favorite nurse out of all the ones we had. Probably because she made sure I was taking care of me knowing full well I wasn't worried about taking care of myself.
The following day at 2 days old, Lilly had her first surgery. We found out she was going to probably need 3. This was not as simple as we had initially been led to believe. This first surgery was a colostomy. She would be on a colostomy bag for a few months, the second surgery would be the bum hole reconstruction and the third and final surgery would hook everything back up after she had a chance to heal from surgery number two. This was the day I had my anti-depressant dosage doubled. Things were much easier to deal with after that.
The surgery went well and our entire entourage got to accompany Lilly back down to her room. This was the first time D-man had gotten to see Lilly since she left for her plane ride from our hospital of origin since kids under 2 weren't allowed in the NICU. Of course, he didn't care but it made me feel good. Now that Lilly was through her surgery and would be released once she was producing stool and eating sufficiently, I could relax and attempt to be Mommy to my other two kids again. The next day my brother and sister came to STL to meet Lilly. The plan had been for them to come home to see her since we should have been home but oh well. It was so great to see them. The following day Hubby turned 30. What a way to spend any birthday much less a milestone one! We went to the zoo. I ate ibuprofen like it was candy and kept up. I finally got to start breastfeeding Lilly the next day and she was a pro instantly. It wouldn't be long!
Two days later, when she was one week old, we got to bring Lilly home. Her heart murmur had disappeared, turns out her heart wasn't enlarged, all her untrasounds of vital organs looked "unremarkable". We got the best case scenario. Prayers were answered! I was excited and scared all at the same time. I was finally going to be able to relax with my baby with no wires, no monitors, no nurses watching. This was exhilerating and terrifying all at the same time. What if her bag leaked and no one was home with me? It had taken 3 of us to change it at the hospital! Would she be like a "normal" newborn aside from the colostomy?
Turns out all of my worrying was for naught. It was only a couple of days after Hubby returned to work that I had to change her bag by myself for the first time and it wasn't horrible. It wasn't the easiest thing ever, but I accomplished it. I was so proud of myself! She was a ravenous eater and a fabulous sleeper. Could I really have gotten this lucky? Maddy was a decent sleeper - once she moved into our bed. We only had a few weeks of nonstop crying. D-man was a great sleeper - once he moved into our bed and only had a few nights of nonstop crying. I thought surely this was going to be my colicky baby. Nope. As long as I could keep her binky in her mouth long enough for her to fall into a good sleep, she was out and in her own bed. Had I actually done it? Finally gotten it right with baby number 3! There really was no secret to getting your baby to stay sleeping in it's own bed other than patience and not being lazy?! Wow.
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