Long day.

Even cute babies have bad days. Nothing serious happened--I'm just hopeful for a new day tomorrow. Par wasn't himself--seems a little congested (not in his chest--but in his nose and eyes)--he cried/fussed a lot today--he just didn't seem to be able to get comfortable. Rusty and I are thinking that the Reflux Monster might be starting to rear its ugly head--we are praying it won't. Par has had a lot of changes in the last 24 hours--so hopefully he is reacting more to the changes and isn't actually having reflux issues. He had his fentanyl discontinued today--so if he tolerates it over the next 24 hours--then he'll have his PICC line removed--and then he is free of wires going into him!!! (his feeding tube and nasal canulla don't count). His feeds were "ok" today--but he only latched on once today--that was my only opportunity actually--I tried again tonight, but he was sleeping. I appreciate all the friendly advice on breastfeeding in our comments section--but keep in mind, Par still has a serious condition that is being monitored by his doctors--unfortunately, his feedings have to be closely monitored (and other than breastfeeding--measured precisely)--his tummy can only hold so much--so we can't have "free feedings" and just try any time he is awake--the written order says we can only try when he is "awake, alert and actively showing signs of hunger"--that way we know it won't hurt him. Also, I can't let him eat as much as he wants, I have to take him off after a while for the same reason. Just because his tummy is back where it is supposed to be doesn't mean it works properly--this is why we are concerned about reflux.



I was glad I was able to be with Par and just hold him today--especially since it seems like it was a rough one. We are also concerned about his tummy. It seems that his stomach is starting to protrude from the abdomen more than in the past. We've noticed that it is mishapen (just part of it) but today it looked almost cartoon like with the bulge. Unfortunately, Dr. Kays is out of town but will be back tomorrow. When the surgery team made rounds tonight I showed them what we were concerned about--he said he would let them (Dr. Kays and his partners) know my concerns but that he thought they were already aware of it. Hopefully they have noticed and aren't concerned...I guess we'll know tomorrow. We ask that you will pray it is nothing--we really don't want another surgery.



Right now it is about 2:30 AM--I'm really tired and not feeling very energetic for writing a super-entertaining blog entry. I just want to go to sleep (but I can't because I have to pump in 10 minutes) and wake up refreshed tomorrow so I can be there 100% for our precious baby. Lord, please give me a peaceful nights rest. I thank God for my husband Rusty--I can't imagine this journey without him or with anyone else.



We had dinner with Tina and Josh tonight--it was good to catch up. Ella is doing well--her CPAP is possibly going to be weaned even more sometime soon--we pray she tolerates it well--we pray she will continue to progress in her feedings as well. We thank God for our friendship with the West family--they are a great strength for us here in Gainesville. We continue to pray for Jonathan and Jasmine.

Good night to all.
Love,
Liz, Rusty & Par