Discussion with Attending Physician

Yesterday afternoon, the DR told Liz that Nayeli not only has fluid in her chest, but also in her lungs. As mentioned before, there is an empty space in Nayeli's chest where the digestive stuff used to be. The body, per DR's, will always fill that space with fluid. The fluid in the lungs was new information to us. When Liz was given this info, I was downstairs checking on our car. When I got back and she told me this, I of course freaked because one tends to link fluid in the lungs to pneumonia. Based on this info, I went to the nursery and asked to speak with the attending DR to make sure we understand exactly what is going on.

The DR met with me within minutes and we talked about our concerns. I first told the DR that we feel info is given to us in pieces without explanation as if something is being hidden or they are trying to soften the blow. The DR first appologized and then said we get pieces of info fed to us just as the DR's often do. With these pieces, the DR's have to formulate what their best course of action is. He said we get these pieces because we are here so often, so they give us what they have when they have it. He said they would be more than happy to have a meeting with us once a day to go over every change or update, or if we wanted, he would make sure we are not fed info until it is full info or they are able to answer it. The DR said he sees our care based on how much we are here and they just try to involve us as much as possible due to this. My first inclination is to know whats going on every moment of the day and not change a thing, knowing this info will be stressful and partial at times.

The DR explained times will be a little tough for us now as the up and down days will be the norm (the CDH roller coaster). Nayeli's surgery and overall stability came fast, and now we are and will play the waiting game for an unknown period of time waiting for her to heal to a point where it is safe for her to come home.

The DR said Nayeli does have fluid in her lungs. He explained that every sick baby in the nursery has some amount of fluid in their lungs and our daughter is no different. He said Lasics is given to combat this and 95% of babies that leave the nursery will go home taking Lasics for perhaps several years of their lives. He said the fluid is definitely not pnuenomia and there is no sign of this even being a concern. He said all they can do it monitor Nayeli and hope the fluid in her chest and lungs resolves itself.

The DR said they are very good at knowing when Nayeli is in pain and give her medication to address it when needed. He said she cries a lot because all babies cry for the first few months, and it doesnt help her situation as she is a sick baby with uncomfortable things attached to her. He said they do their absolute best to keep her as comfortable as they can.

The DR said their concerns are ours, and include the fluid situation, feeding, and montitoring her growth as a little person. As these things get better, Nayeli will get stronger and heal faster. The DR said they will keep trying to resolve her fluid and overall restlessness. We also have to overcome the hurdle of teaching her how to feed from Liz's breast instead of the feeding tube. As time passes and they resolve her breathing rate, they will next try to get Nayeli to Liz's breast. If this works, the next step will be to remove Nayeli's PIK line and make all of her feeds by mouth. This will take time and the DR asked that we try to be patient. In hopes that the transition will be smoother, we have been putting a little breast milk on the end of a binky and rubbing it on her mouth when staff feeds her through her feeding tube. We hope she puts two and two together when the time comes.

Overall, it was a great conversation and we were very pleased the DR took the time to explain things. It was a gentle reminder of how fragile our pretty little flower is and how things can change day to day. We will continue to take things minute by minute, hour by hour, and day by day. We are thankful to God for having our beautiful little bundle and for him watching over her and us in this journey.

Please keep your prayers and nice thoughts coming. We do and try very hard to be strong as hard as it may be sometimes! We love our baby girl and will stay by her side as long as it takes.