Logan Being Moved to CHOP

Well, it was a particularly emotional Christmas day for me as I think the volatility of this whole experience is really catching up to me (or perhaps I’m just at my breaking point and unable to control the emotions that I’ve been keeping pent up for so long). I spent this joyous family holiday without the most important part of my family and it just absolutely broke me. We tried to make the best of our situation on Xmas morning - Steve bought a big bag full of toys and books and we brought them into the hospital to show the boys, we read them “The Santa Mouse” and dressed them in little Xmas onesies and Santa hats. But in the end, the magnitude of our situation just hit me really hard and I couldn’t shake it. It certainly didn’t help matters that Logan had a terrible day – he was lethargic, wouldn’t take his bottle and had a bad de-satting episode into the 30’s and his nurse had to bag him. The day only got worse when the doctors advised us that tomorrow Logan will be separated from his little brother, the nurses with whom he’s become attached, and the only home he’s known since his birth and moved to CHOP. His condition will be assessed and evaluated by the chief neurologist and he will make the ultimate decision of whether or not they will go ahead with the shunt placement surgery given that he is now well over the required minimum weight of 2000g (app. 4 lbs. 7 ozs.). Logan’s doctors have been in constant communication for the last few weeks with the CHOP neurologist who will be performing the surgery, though he has not considered Logan's situation to be of particular concern or one that has needed immediate attention. Reason being is that miraculously enough, Logan is not showing any signs or symptoms that he is in pain or being overly affected by his hydrocephalus – he is on low oxygen, is bottle feeding, growing at a normal rate and behaves completely appropriate for a baby his age.

The alternative to the surgery would be to hold off, send him back to Pennsylvania Hospital with his brother and continue to simply monitor his head size and draw the extra CSF with the spinal taps (which they have been doing 2-3 times a week for the past month), though that is highly unlikely at this juncture. With each spinal tap they perform on him, there runs a great risk of infection and if he were to become septic, they would neither be able to perform the shunt surgery nor would they be able to do a tap to relieve the fluid and pressure build up and this could be extremely dangerous for him. The doctors have expressed numerous times how miraculous it is that he hasn’t acquired a single infection from the dozens of taps he has received in the past 2 months. But of course nothing that Logan does surprises me anymore, he lives by his own set of rules. In any event, the hope was that he would eventually “outgrow” the hydrocephalus and the drainage problem would resolve itself as he gained weight and grew stronger, thus eliminating the need for the taps or the shunt. Unfortunately, that doesn’t appear to be the road on which we are traveling. And so, we push on as a family through yet another difficult obstacle with our fierce little fighter Logan leading the way for all of us.

It's been another steady week for our little men as they continue to make tremendous strides in their growth and strength. Logan now weighs an incredible 5 lbs., 2 ozs. and Landon is up to 4 lbs., 11 ozs - that's almost 10 pounds of baby!! They really are turning into such little chubbers, I just can’t get over it. As they grow bigger and stronger, so do all of their vital organs, including their once frail and delicate lungs and their recent respiratory efforts are certainly a testament to that fact. They both graduated off the high flow nasal cannula last week and have been on the conventional cannula, with Logan being at a 1 ½L flow on 30% oxygen and Landon being at a 1L flow with only 21% oxygen. Landon’s de-satting episodes have significantly decreased over the past few days and yesterday we got a nice surprise when we arrived at the hospital to see Landon’s handsome face completely free of his nasal cannula. He is no longer on any oxygen and is breathing with absolutely no assistance. He did great with only a few de-sats into the 70’s but they were quick ones and he would always bring himself immediately back up into the 90’s where he belongs. Barring any unforeseen setback, I don’t see any reason why he won’t be home with us in 3 weeks around the time of my due date (January 19th). What an absolutely terrifying and exhilarating prospect – I will barely even allow myself to process that thought because I have become so programmed to just take things one day at a time. The minute you begin looking ahead to the future, something unexpected occurs to give you a violent shove back into the reality of here and now.

They both continue to take the bottle at alternating meals with every other feed still being given by gavage feed through their OG tube. Of course it is still a roller coaster experience with some feeds being better than others. Logan is slow to catch on at times, it usually takes him a few minutes to realize what he’s supposed to be doing but once he gets it, there’s no stopping him, he usually finishes his entire bottle without even needing a break. He has done very well at learning how to pace himself and to stop sucking and take a few breaths when he’s tired. Landon has no problem figuring out what to do with his bottle but his biggest problem is learning to slow down – he’s so eager to eat that he will gulp down half the bottle and then choke on it and de-sat into the 70’s. Reflux is an ongoing problem with which they both deal so it’s important to keep them in an upright position during and after each feed because they are prone to spitting up (usually Landon) or de-satting. Logan is now receiving a little over 1 oz. (37 ml’s) of breastmilk with each feed and Landon is getting 38 ml’s.

Tonight is the last night that Landon and Logan will spend together for quite some time and the thought that they will both be alone tomorrow is just breaking my heart all over again. I’m finding that as I continue to write this blog each week, it is becoming increasingly difficult to express in words the gamut of emotions I’m trying to sort out within my head and heart. The profound sadness, exhaustion, love, pride, grief, anger, fear, anxiety – it is all so overwhelming. I pray that the Lord will watch over Logan and keep him safe during these next few days as I imagine they will be terribly traumatic and scary for him.