Bursting at the Seams

Our Little Prince and Sleeping Beauty!

{Hughie and his dad}

{Hughie goggle free and eyes open}

{Hughie and mom}

{Sleeping sound after playing hard}

{Such a precious part of our lives...both these little kiddos}

I am so tired and worn-out today. I am more sore today than I can remember feeling since having Hughie. I am looking forward to some sleep. I just wish I felt as peaceful as little Miss Ruby looks when she's sleeping.

Hughie had a decent day today. The early hours of the day started a little rough with a poor blood gas and therefore an increase in some of his ventilator settings. But since then, he has had a stable day. Unfortunately, he did gain some more fluid weight, even though he was given lasix to try and help him get rid of some fluid. He has gained almost 2 lbs in extra fluid...not good. Yesterday, some new plans for Hughie were discussed and implemented today. Hughie's neonatologist consulted with the cardiologist, and it looks like Hughie's PDA (one of the holes in his heart) has more left-right shunting than right-left...it was previously thought that he was shunting more right-left. With this new information, the cardiologist gave some suggestions for Hughie's care.

1. Wean Hughie off the nitric oxide which is dilating his lungs.

2. Once the nitric is off, re-evaluate the PDA and possibly start the process to close it.

**The PDA can be closed medically with medication or with a surgery**

3. As the PDA closes, evaluate for a coarctation of the aorta

4. Wean his milrinone and dopamine as tolerated.

The weaning of the nitric oxide started last night, and during the day he tolerated the wean well. I just talked to the night nurse and the nitric was completely turned off at 8:00 and so far, Hughie seems to be tolerating it (I am very pleased with this). His milrinone has been lower all day and his dopamine is at 8 (down from as high as 18 in the last 24 hours) and he is currently stable with these settings. I am praying he continues to do well throughout the night. In the morning, he will have another echo of his heart to look at the PDA and we will go from there. I am glad to be making some proactive changes in Hughie's care...we will have to see how he does. He still needs to start peeing more in order to start ridding his little body of all that fluid!! It can't be comfortable to be so fluid positive. My heart aches looking at him lying in his little bed. I just want to scoop him up and hold him forever. As I sat next to him today, I couldn't get out of my mind that babies are meant to be held and cuddled and I want so badly to be able to do those things with my son.

His eyes have been open more lately, and he definitely responds to his environment. He is very sensitive to sound and his night nurse told me how he hates shift change when the nurses are giving one another report because it is so noisy. Last night when we were weighing him, his nurse lifted him up first and then had me switch her out...well, the second she lifted him he decided to go poop. Pretty funny if you ask me! He hadn't pooped for a couple of days, and he had to choose the short moment he was being lifted. I think it is pay back for being poked and prodded at so much. He is a funny little guy...just like the Signing Time song "Hughie will do what Hughie will do when Hughie is ready to do it." I'm hoping this is the case for many things in Hughie's life.

Ruby continues to be such a sweetheart through all this. She is so social and loves being around people...even if it isn't her mom or dad. It makes my day when I come home to her and her face lights up when she sees me...and she usually says "ma-ma". Another one of those tender moments I live for as a mother. Although life is pretty dang tough right now, I feel so blessed and loved.