You know that phrase, “the light at the end of the tunnel”? Well, we have almost made it to the light, by having just a few more things for Rochelle to pass and be able to handle and we should be going home tomorrow!! yay!! Just in time to cherish every single thing we are so thankful for this year for Thanksgiving with our family. We cannot wait! (Update–She did pass her car seat test, so now we are just waiting on a couple more things and we will be FINALLY going home today!) 🙂
I will update you all on how things are going, and why we are able to leave way earlier than expected. After pushing for a plan of care meeting for baby Rochelle, the doctors finally made it happen. It was our primary doctor, the palliative care doctor, the case manager and the charge nurse in the meeting with Shane, my mom, and myself. I wasn’t nervous at all coming into the meeting, I was just ready to get the ball moving on what was going to happen next since she had fought off her terrible infection already and was doing much better.
The meeting started off with an introduction from everyone, and kind of a little brief overview of what was going to be discussed and of course the questions came about my pregnancy and when did I find out we were having a T13 baby and what our decisions/thoughts were back then. Then the palliative care doctor started off by saying we will go over her major organs affected, discuss each option and then decide on what’s going to be the plan of care for Rochelle. I thought that was a pretty good idea so that we could all be on the same page when it came to her future care.
First she started off with feeding, stating that there is a very slim chance that Rochelle will ever be able to drink out of a bottle (she is not too good at the suck, swallow, breathe method and has severe reflux), and that we need to discuss further options of feeding. She started with the NG tube (which is what she has been having in the hospital), where a small feeding tube gets inserted through the nasal cavity down into the stomach. This is the hardest method to go home to just because there is a lot involved in the maintaining as the child grows and starts to pull at everything. (I initially said NO because I knew it would be a lot of work for Shane and my mom to learn how to do). Then she spoke about the G tube surgery and a feeding tube is surgically placed inside the stomach to directly feed into which would have been the best option, but that requires for her to go under surgery and the doctors didn’t think with her lungs being so small that she would do well tolerating surgery. Then they said the third option was to do nothing and go home with just bottle feeds and not having any tube of tube feedings at all. She also has intestinal malrotation (you can learn more about it here, which could affect her later on if it develops a volvulus and cuts off circulation in her intestines and make her have immediate surgery or could possibly cause death. So we chose to stick with what she currently has (the NG tube) and for Shane and my mom to learn as much as they could at the hospital before going home about how it all works. Also to monitor the intestinal rotation for now.
Then we went to the heart (ASD, PDA) and discussed the treatment options. They stated that with her PDA and ASD both getting smaller that we could just monitor and see what her body does on it’s own and continue her on Lasix (a diuretic to remove the excess fluid from the body) and fluid restriction which we are currently doing with her feedings. The second option would be to give medication such as ibuprofen or endomethicin to work directly to close the PDA but that medicine usually works best in the first two weeks of life and it’s really hard on the baby’s kidneys and they usually don’t resort to doing it first in the NICU. The third option is surgery known as the PDA ligation (where they close off her PDA and she would never have to worry about it again). Our choice was to have follow-ups with the cardiologist and monitor for any side effects from her heart.
Last but not least, came her lungs. She has small lungs, meaning she breathes shallow, fast, and without a whole lot of extra strength. The main cause in children with small lungs is apnea where they stop breathing which could eventually lead to death. The first option was to go home with no help, just her breathing room air. Second option was for her to go home on a nasal cannula (which is what we have had her on in the hospital) but the doctor said it’s more for her comfort and to have to work less to breathe but overall the oxygen is not doing much for her. The third option would be CPAP (a breathing machine), and the fourth option would be a tracheostomy which is where a tube is inserted into the throat that can be used with a ventilator and help the breathing. We chose to take her home with oxygen by nasal cannula and pulse oximeter machine so we can see what her levels at are at home.
With all this said, our options are chosen to bring her home with a feeding pump, oxygen concenrtrator and tanks. and a pulse oximetry monitor to see what her oxygen saturation levels are within her range and save any type of surgery until she gets stronger and could tolerate it. It is such a blessing to be able to leave today, knowing that tomorrow and this weekend will be spent with family, love, and happiness. I cannot wait for everyone to see Rochelle.
Happy Thanksgiving, please continue to keep us in your prayers as we start this new journey with her at home! 🙂