First time outdoors!!
LOVE!!!
All 3 of my babies together in our house!!!
Carson's first time holding Will by himself. He was fascinated by Will's hands. They just held each other's hand for 3 minutes. PRECIOUS!!
Our homecoming is such a bittersweet moment. We know that we are only home for a short while. William is scheduled to have a cardiac catheterization on July 5th. His respiratory symptoms in the past week have continued to be problematic. He is simply breathing too fast! He is not working extremely hard for each breath but taking too many shallow breaths. This is very similar to how he was breathing before his TAPVR repair. His echocardiogram last week was concerning with a pressure of 6 in his left atrium. The echo was repeated this week.....not reassuring at all. His pressures have nearly doubled in 1 week. The left atrium is reading out at 11. And, the area of surgical repair is too narrow. The narrowing is causing the increase in pressure. The cardiologist and the cardiac surgeon do not understand how or why this has happened. So, the cath will be done to determine what the next course of action is for William's heart. If there are areas that can be ballooned during the cath, then this will be done. But, the entire team is doubtful that the narrowing at his surgery site can be ballooned. The cardiac surgeon wants the pictures before another open heart surgery.....likely the end result for William, a second open heart surgery!
Please continue to pray for William and the medical team managing his care. As the mom administering his meds and managing his feeds from home, I need prayers as well. I am a trained professional who does these tasks day in and day out, but not on my own baby. Tonight, I had to place his NG after he pulled it out. 4 attempts later--it is in place and working like a charm. AND TAPED DOWN A LITTLE BETTER! Watching your 6lb. baby cough and scream as you put a tube down their throat is awful...and seeing your hubby hold him steady..awful!! 6 medications throughout the day at multiple times through his NG--a process in itself. And, then let's add his double skimmed breastmilk to the mix. Yes, you read that right, double skimmed breastmilk. He had an intolerance to the Enfaport formula that he needed for his chylothorax from surgery and can't have fats in his diet for 2 weeks. So, we are having to skim all milk for fat for 48 hours and then add another fortifier to get him calories. Poor kiddo is being tube fed 22 hours a day...he can't take food orally because he is breathing too fast. It is like a science experiment in my fridge. And, once again, William broke the mold--he is only the 2nd baby that CMH has used double skimmed milk as a feed.
Papa Miller and Grandma Joyce savoring the moment!!
Being home is exhausting!!!
AND, HEART SURGERY...."THAT WAS EASY"
This is the only time he has not had one tube on his face...the moment didn't last long, but we snapped a shot in the meantime!!
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