Here, sitting at work on the most mundane Tuesday ever and LOVING IT! You know why, because today is one of the good days. The days when you can't get out of bed you're so tired because your 4-month old isn't sleeping through the night, when your 3 year old has a meltdown at daycare drop off and wants his matchbox cars, when it's pouring rain outside and uber cold, when you have too much office work to do and a co-worker is rude. Yes, yes - these are the good days. I looked back at my few short blog posts while baby E was in the hospital and I am so sure that today is a good day.
I thought about going back to fix the 100s of typos I made throughout those posts, but they speak to my stress, lack of sleep and utter state of survival. That's what it was, mere survival. We have crossed over and seem to be living now...really living. The good, the bad, the ugly but living it.
I can't even begin to describe how far we've come in 4.5 months but I will try. Those first 2 weeks were pure hell. Leaving the hospital without baby E was excruciating. The unknown, the hospital, the commuting, recovery, taking care of a toddler. Just so incredibly awful, but thankful for great doctors, my mom, my strong little E and my hubby E. We have made it pretty far.
Baby E had a feeding tube until the first week of December. Those weeks with the tube were terrible but it was the only thing keeping our gal from major surgery and going back to the hospital so we kept up the routine of bottle feeding, feeding tube, pumping breast milk, washing bottles and pump parts...doctor's appointments...around the clock for weeks on end.
I had to mourn breastfeeding - now I was an exclusive pumper. It made me so sad not to be able to feed her at the breast like I did her brother. I had so badly wanted this and ahead of her birth I was really looking forward to this bonding time. You'd think this would be the least of my worries, but when feeding is your LIFE and you have a child with physical challenges to feeding, simple things are complicated. Learning new feeding techniques wasn't on the agenda. Providing food for your child is the most basic of parental activities and our new way of feeding so truly foreign to us. I felt like a new mom all over again. Unsure of myself and living in a fog. Yes, there was mourning, but then there was acceptance, learning, success and celebration with each feed.
The feeding tube and pump was like an unwanted member of our family. None of us wanted to deal with it, but it was a necessity. Inevitably, the tube came out in the middle of the night and I had to put it back in. Screaming baby, 4am and mommy got that sucker in there like a pro. I am still so proud of myself for this. Her face tape had to be replaced almost daily, baby E screamed and thrashed, but it had to be done. Her weekly weigh-ins were so nerve-wracking. When one we she only gained an ounce, the docs ordered a sleep study and a swallow study. Yikes, those were complicated and maybe I'll write about them soon.
Baby E was a champ though; she was doing so well with her bottle and still gaining weight, the docs let us take her feeding tube out. We opened a very expensive bottle of wine that night as it was the first time since the moments she was born that we could see our gal's little face clearly. Something so simple as seeing her face clearly and it made us so joyful. No tube, no tape, no rash...just our little E. She looked like a normal baby, aside from her small chin. I didn't have to explain to people "what was wrong with her" anymore. Not that anyone ever said it like that thankfully, but there were questions...I had to explain...it was hard sometimes but we persevered.
TO BE CONTINUED....