Day of Life #45

Hey all,

Been a while since I've made an update, but I'll do my best. Maddie's blood pressures were creeping up higher again today. The doctors are adjusting her dosage to compensate. She's had some projectile vomiting yesterday and today, completely soaking me last night. I got to spend some time in a hospital gown while my clothes were laundered. Yay! We think during today's spit up, she spit up her medications too, so her blood pressures have been even higher today. She is supposed to get her central line removed today, another step closer to going home.

In talking with the doctors about a long-term care plan for her, the plan is to get her blood pressures under control with oral medications and find a feeding solution that will get her home. The understanding that we have from the doctors is that her kidneys are functioning well enough for her to grow now, but eventually, she is going to outgrow their metabolic capacity at which point she will need dialysis again until a transplant can take place. That being said, Madeline is going to need a lot of attention when she gets home, meaning that a normal day-care isn't going to be appropriate for her. We're going to start looking at our options and what we can afford and build a plan off of that. We've still got some time to figure all that out.

Adalee- Gained 50 g last night! Good job! She is also now on room air- which means she is not in a isolette where the temperature is controlled- which means she can maintain her own body temperature- One step closer to getting home with mom and dad! Keep the prayers ongoing for a quick route home.

Everett- Please say extra prayers as mom let us know yesterday that he has a blood infection :( I am sure this is not at all what Mom and Dad were looking to hear. They will meet with Doctors this evening to learn about what type of infection he has. He is currently being treated with antibiotics.

Take Care of everyone and Praise God for every progress we have..big or small.