Bursting at the Seams

Looking Forward to Some Sunny Days...

Isn't this a pretty picture? Hugh took it last summer at his parent's house in Woodland Hills. Makes me want warm weather here, right now. Also has me looking forward to better days with my sweet little son. Hughie has been stable over the weekend; although, he really isn't getting much better. He received more blood products last night and today, plasma three times and red blood cells once. It is curious where all his on own blood products are going. His red blood cells are partly low because they have to take so much of his blood every day for labs (blood gases, blood counts, cultures, etc.). About two nights ago, Hughie had a PICC (percutaneous intervenous central catheter) placed in his arm so they could remove the line in his umbilical vein (UVC). The PICC works like an IV, but will last much longer and will enable Hughie to receive his heart and blood pressure medications along with his nutrition, until the doctors want to start feeding him (I've been pumping away freezing milk to give to my little guy). The UVC was starting to look red (concern for infection), so it needed to come out. They started him on antibiotics immediately and drew some more blood cultures to look for infection. Sure enough, we found out today the cultures came back positive, which means he has an infection...again. Hopefully we are somewhat on top of it because antibiotics were started immediately upon finding the redness. It is protocol to keep drawing blood cultures every couple of days until they come back negative. So more blood draws for little Hughie. He is still very puffy...poor guy, it looks so uncomfortable. They have started giving him albumin to try to pull some of the fluid back into his vessels and then give him some lasix to help him pee of the extra fluid. So far he hasn't responded great to the lasix. I think it is up to his body to heal and start getting rid of the fluid on his own. I keep praying for this. The good news....they were able to come down on some of his ventilator settings today! He still needs the bili lights (which means he has to wear those dumb goggles), but hopefully his levels will be low enough in the morning to stop the lights. I cherish those rare moments when he has the goggles off and I can look at his sweet little face.

On Saturday, little Hughie received a very special blessing from his father. Hugh gave him such a tender and sweet blessing...blessing his body and all its different systems to have the capacity to perform their role. He also blessed Hughie to know that he is meant to be a part of our family, and we feel blessed to have him. I am grateful for Hugh and the priesthood he worthily holds, so he could bless our sweet son. Those present for the blessing were: grandpa Sterling, grandpa Scott, Bishop Beardall, all his uncles, Mike, Arthur, WIll, and Andrew. You have alot of love and support surrounding you, little Hughie. Afterward Hugh and I each received a blessing from each of our fathers. I know these will help give us guidance as we make decisions for our son. I know we are receiving help from above through all of this...I can feel it everyday. It is often what helps me confront each new day.

It is a new week....I"m looking forward to what may be in store. I am so antsy for Hughie to turn the corner and start getting better. **I am also hoping to feel less sore myself, I've decided it is not very much fun healing from a c-section** We will probably sit down with Dr. Carey, the geneticist, this week and discuss little Hughie and what may be in his forcast. This will be helpful as we continue to care for this special boy. Thanks to everyone for your thoughts, prayers, and support...we can feel all this energy everyday. I'm sure little Hughie can feel it as well. Much love to everyone.