We finally feel like we can see a light at the end of the tunnel. This has, by far, been our toughest hospital stay emotionally. The surgery went great and Lyra healed really well. The surgeons did what they do very well. The problems came when we started to try to put formula back into her system. At first Lyra was fed through a NJ tube (tube that went through the nose, past her stomach, and past where they performed surgery). By the time we got up to “full feeds”, Lyra was throwing up stomach acid and bile every 5-30 minutes and becoming very dehydrated. The only way to stop it was to stop the NJ feeds. It was awful and didn’t make and sense. There wasn’t anything actually going into her stomach. Mid week we felt like we would never be able to bring her home. The only thing that kept Mark and I sane was our nurses who backed us up and argued with the surgeons about needing to change our approach and get GI involved. At the end of the week they did another test and discovered that everything was moving through her system just fine (meaning no need for additional surgery).
So, I proposed a new approach and surgery let me run with it.
We stopped using the NJ tube all together and moved on to using her G-tube. My thought was, if she was producing so much bile, we should give it a job. The worse that could happen is that she would throw up…. she was already doing plenty of that….Also, I remembered a dietician saying that with babies like her you can only increase feeds 1mL at a time. Before we increased the feeds my 5mls and we saw how well that worked. So, we started at 10mL/hour and increased by 1mL every 2 hours. Sounds crazy, I know. BUT IT WORKED. By 2 am last night we got up to the goal rate of 36 mL/hr (just over an ounce).
We also finally got surgery to call in GI to consult (it took 3-4 days of me pestering them). GI thought we did well and gave us a game plan for getting back to bulous feeds. They also gave us the total number of mL’s she needs per day, so we know if she is getting enough calories. When GI followed up with us this morning, they basically said that we were capable enough to do things from home with the information we have. Plus, it isn’t like we don’t have support. We have a nurse that stops by the house as frequently as once a week, plus an occupational therapist to help with feeding, my dietician is always available via email, and my GI doctor has an office 15 min. away from our home. Oh, and we have done this whole feeding tube thing for the last 3 months.
So now we just need to convince surgery to discharge us. They did an AMAZING job with her surgery (she has healed beautifully and they fixed the problem with her duodenum) We are hoping we get to go home tomorrow, but it might not be until Wednesday. The good news is, Mark and I see a light at the end of the tunnel. Our little one is quite the fighter.
Yes, I know this is for breast cancer support, but she is a little fighter
it’s nice to support breast cancer research at the same time