Where Do I Begin To Catch Up?

Busy week. We are on day 9 of no dialysis. Before everyone gets too excited, Maci WILL go back on dialysis because she needs it. She needs the dialysis to continue to filter (clean the junk from her blood) because her kidneys still won't filter. She continues to have good urine output. This remains a good thing because it is keeping her electrolytes in balance. With Maci we have to watch things like sodium, potassium, phosphorus, calcium....etc. It can't get too high or too low. Since her break from dialysis all of these things have remained "normal" and she hasn't gained fluid weight and gotten puffy. **applause**

It has been a TOTAL BLAST being able to walk the halls with my girl. We take a walk around the NICU daily...sometimes more than once, sometimes more than twice. Just the change of scenery WITH my baby girl has been heartwarming. The fact that she can be unhooked for a short time and sit in a chair that isn't practically sitting in her bed has been nice. Maci sleeps on most of the walks but has decided to keep her eyes open for a few. It's fun to visit with all of the nurses too. I know I sound like a broken record but I can't say enough great things about these nurses here. I have averted a nervous breakdown so far but when we leave here, I know my eyes will pour tears like a fountain! In a world that flipped upside down for me, these nurses, nurse practitioners and doctors at least turned it back sideways for me and continue to help get it back upright.

Neurology came by yesterday to discuss Maci's MRI results and basically reiterated what Dr. Gomez had already shared with me and Rick. At birth, part of Maci's brain suffered a lack of blood flow and oxygen so that part died. Future problems? We don't know, it's a wait and see and address as anything may come along. Maci is meeting all of her milestones and doing well with mental and physical development. Rick and I are choosing not to focus on what COULD happen. We have decided to take this information and use it if the time comes that we need to focus on certain aspects of Maci's development. She received physical and occupational therapy now and it will continue once she is home. Hopefully we will not have any issues but feel confident that any potential problems may be avoided or lessened by continuing her PT and OT and working with her like we have all along before we knew she had a problem with her brain. Regardless, she is my baby and like I whisper to her often, WHATEVER IT TAKES, we are in this together and as a family we'll get through anything. None of this is in our hands and the doctors are only healthcare providers; God is a healer. Whatever He chooses for Maci, he too will provide the strength for Rick and I to be right by her side.

All together, Maci has a 1) neonatologist 2) nephrologist 3) endocrinologist 4) neurologist 5) opthamologist 6) physical therapist 7) occupational therapist 8) dietician and 9) a momma who's head is spinning. I don't think I am leaving anyone out. Ggggrrrrrrrr

Yesterday they did some testing on Maci for dialysis. It is a peritoneal equilibration test (PET). This test shows how much waste the peritoneum clears. It will help the Nephrologist determine Maci's dwell time (the amount of time the dialysate sits and she can go along with normal activities). It tells more things also, which I understand, however it's a bit over my head to be able to adequately explain here. Dr. Eison is going to review the results and determine a plan for Maci and she should restart dialyis in the next couple of days.