2 Steps Forward, 1 Step Back

I've tried really really REALLY hard not to worry about Brody.  In my heart I know everything will be ok.  I know there are more prayers going up than I could even fathom.  Yet somehow I still worry. Maybe I'm confusing the emotions.  Maybe I'm just sad.  I want to scoop him up, rock him back and forth, and kiss him to make him "all better".   It's such a helpless feeling standing by his bedside while the nurse pricks his tiny heel to get more blood...or flips him to his side to try to drain more dialysis solution from his abdomen...or adjusts his oxygen as his breathing gets more labored. I've changed his diaper 3 times since he was born. That's about as hands-on as I've been able to get.  I have held Brody a few times now, but as stated previously, I literally hold him as still as possible. I don't rock. I don't bounce. I don't hold him against my chest and pat his back. I pump every 3 hours, yet Brody hasn't been fed in 5 days.

Brody still desperately needs our prayers.

Monday evening (3/19) after I left the hospital, the nurse started the dialysis treatment but couldn't get the solution to go in. They thought there might be a kink in the catheter.  An X-Ray showed no kinks and by the time the surgeon arrived, the nurse was able to get the solution into Brody's little body. They did 2 of the 6 passes but they weren't able to get out all the solution so they stopped the dialysis treatment (if they put 50cc's in, we hope to get 50+cc's out).

On Tuesday, Abby went with me to visit Brody and he seemed pretty puffy. Makes sense since retained so much of the fluid from the day before. He did manage to open his eyes while I was holding him but also cried a lot...which made me feel just horrible. I wish I could ask him "what hurts?".  Not a new feeling since Ryder just recently learned to answer that question.  But still a feeling I don't think any parent enjoys. The doctor ordered 10 passes of dialysis to hopefully draw off some more fluid.  The next day when Adam and I saw him, he was definitely WAY less puffy than the day before.  They continued to do 10 more passes.

Thursday, Brody's lab work showed that he has low iron and low potassium. His nephrologist also reiterated to me that he needs more protein which will help his puffiness.  She said the best way to get more protein is to give him milk (b/c there's only so much the body can absorb through the IV) but because he is still on the high flow cannula, they cannot give him feeds.  The neonatologist decided to put in a TP tube so that they could continue the feeds.  A TP tube goes in through Brody's nose, down his throat, into his stomach "and beyond" (that's how the Dr. explained it to me).  And they could only give him a maximum of 2ml of milk per hour (but they would have to build up to that). The reason they cannot feed him without the TP tube is because being on the high flow cannula, he has a greater chance to aspirate. The TP tube significantly reduces this risk. I also learned that the kidneys produce a hormone called Erythropoietin that regulates red blood cell production. We will have to give Brody 2 to 3 injections per week of this hormone.  Since Adam is so good with giving shots, this will be his job :).  That night they were going to continue with 10 more passes of PD but Brody was had a rough night (a.e. 60s) and they had to crank up his oxygen and were only able to do 6 passes.  And they weren't able to start feeding him either.

Brody looked so good on Friday. The puffiness in his face was a lot less noticeable and he was awake and alert for a good bit while my mom and I were there. His PD solution was adjusted to take off even more fluid and give him more potassium. But when Adam and I were with him on Saturday his respiratory rate was very rapid. The nurse practitioner said he has a lot of fluid around his lungs which is making it very difficult for him to breathe. The respiratory therapist gave him a breathing treatment with Albuterol which made his heart rate increase as well and he was getting an injection of sodium phosphate through his IV. Everything is such a delicate balancing act and the nurse gave us a warning about the future.  She said there are going to be a lot of set backs. Once we get his PD solution figured out, anytime he gets sick it's going to throw him off balance and it will be back to square one trying to figure out the best PD solution again.  She also told us that they only get one "renal baby" a year.  Lucky Brody.  And that's the reason he's had a different nurse almost every day....they're all getting a chance to learn how to do the dialysis treatments.  ...Because his respiratory rate was so high (peaking at 170+ per minute) they only did 5 of the 6 passes. He was also leaking a lot of fluid at his nephrostomy site so the nurse did some lab work to make sure he didn't have an infection anywhere. ...He doesn't. Thank God. I got to hold him again for about 45 minutes and this time he didn't cry. But that might have been because of the pain medicine he received right before I held him.

12 days old

I pray that he is one day able to run and play with his brother without the assistance of oxygen and without tubes hanging off of his little body.  I am so thankful for all the prayers, words of encouragement, cards, gifts, and love that everyone has poured out to Adam and me. I ask that you continue to pray for my sweet baby Brody, specifically that he's able to be weaned from the oxygen very soon and that they can start feeding him as well. Please pray that the doctors are able to figure out the best solution for his dialysis and that he continues to be free of infection. I never realized exactly how much our kidneys do for our bodies. If you think (like I did) that all your kidneys do is produce urine you are very very wrong. Show your kidneys some love and visit www.kidney.org to learn all about how to keep your kidneys healthy. :)  Did I just sound like a commercial?