The latest...highs and lows

Hi all...sorry we've gone pretty much underground the last several days. It's been a series of very high highs and some difficult lows since our last update. On Friday we got the unexpected word that Charlotte was doing SO well she would be ready to come home on Saturday. All she had to do was pass the "car seat challenge." We had to bring her car seat in to the NICU, demonstrate we knew how to appropriately put her in, and then they monitored her vitals for one hour in the seat to ensure she could tolerate that position. So, Friday was a day of nervous anticipation, last minute errands for supplies, fine tuning the nursery, etc. We're bringing our baby girl home!!! We arrived at the hospital on a high Saturday afternoon. When we arrived, though, the nurse informed us that Luke had had a couple of pretty serious episodes of "desaturation" on Saturday morning, which means his blood oxygen level fell significantly, struggled to breathe, and turned a dark ashen color called "going dusky". Apparently he stopped breathing for 1 minute. Whoa. All along he has struggled with respiratory issues, and had previously had some minor episodes, but nothing like this. We had long conversations with the nurse and doctor about what might be causing the issue on both Saturday and Sunday. The doctor pretty much ruled out anything neurological, as he demonstrates strong alertness, focuses and respond well to stimuli, etc. We had also run a chest x-ray which ruled out anything infectious or viral like pneumonia. So, the doctor requested a consult from a pediatric ear, nose and throat specialist to see if there could be a structural blockage, etc. There was also discussion of whether reflux could be contributing to the problem, a very common issue with preemies. They started him on Zantac on Sunday evening for the possible reflux. After just a few doses it seems to be making a difference. His color is better, and no episodes. Reflux can be very distressing to little babies, causing them to clamp down their airway and possibly cause those desaturation episodes. The specialist also examined him this afternoon, and actually did a scope of his upper respiratory system. It appears that he may have a narrowing of the right sinus airway, and she also saw the signs of the likely reflux. On Tuesday, Luke will have a CT scan of his sinus area to determine if the narrowing is structural (bone), swelling from the suction they're doing because of his cold, or both. They're giving him steroid drop to reduce the swelling also. The long and the short of all this is, nothing we're facing indicates a long-term health issue. It could be as simple as treating the reflux, which babies generally grow out of in the first several months to a year. Even the structural narrowing would be "outgrown," as he grows and the overall airway expands. If the narrowing is severe, there are procedures that could be done to expand/hold open the airway for him until he outgrows it. So, we're cautiously optimistic that the coming days will be more answers, improvement in his immediate condition, and a long-term plan. In the meantime, little Charlotte passed her car seat challenge with flying colors on Saturday, and we officially arrived home with our sweet baby on Saturday night. We were so exhausted from the events of the day and our concern about Luke that we ate dinner and all went to bed early! Being nervous first-time parents, we put a pack-n-play in our room and had Charlotte "sleep in" with us. We wanted to hear every coo and squeek! The little angel was so good for mommy and daddy that she went nearly 4 hours between feedings and barely fussed at all. God is watching over us, as we now go back and forth to the hospital, bringing Charlotte each time. We call her our little church mouse as she patiently sits in the corner in her car seat while we visit the boys, and talk with the doctors and nurses and we rarely here a little peep or coo. We just feed and change her as necessary and she never makes a peep! And lest we forget Sean! Big brother continues to grow and thrive, but is still working to learn to eat. His suck/swallow coordination is a bit disorganized, and he is only able to take a fraction of his feeding by mouth. The remainder is given by NG tube each time. An occupational therapist visited today to evaluate him, and didn't see anything serious requiring specific treatment or therapy. She did provide some strategies for assisting him as he eats, and everyone seems to agree that one day the light-bulb will suddenly switch on, he will get it, and be home with us a matter of days after that. They're also treating him with Zantac, as he is regurgitating pretty regularly as well. So, our days our VERY full and unpredictable right now. We're treasuring our hours at home with Charlotte, learning from her and getting to know her - and then heading to the hospital to see our boys for a few hours each day. We're all a bit tired but hanging in there! A friend from church coordinated meals to be delivered each day through the end of the month, so we are blessed with good meals instead of fast food or PB&J sandwiches. We also enjoy tiny bits of "normal" time, as I type this in front of the TV while Daddy and Charlotte watch the Vikings game with baby asleep on his belly. Thanks to everyone for your continued thoughts and prayers, and we hope to slowly come out of our cocoon enough in the coming weeks to respond to calls and emails ocassionally.