June 7th, Bryce's recovery, River's pending release!

It has been around a week since our last update.  There were questions about whether River would be able to eat a week past his surgery when the X-rays suggested it was time.  There were questions about whether his GI would kick into action, accept, process, and remove waste properly.  Well, those questions have been answered resoundingly!  River is not only eating food directly, but he is taking around 50% of it directly from Nicole while the remainder is given by bottle.   He is not only digesting his food, but his intake has increased every day since he began this past Thursday and he has not only regained the weight he lost post-birth on his PICC line, but he has now surpassed five pounds!  He is producing normal waste in a normal fashion as well!  And while most parents are not too stoked about poopy diapers, for a guy born with his conditions, this is a pretty treasured part of the living process for us.  As a matter of fact, so remarkable has been his development that he is slated for discharge this Monday and will move into the Ronald McDonald House with Nicole and I.  That’s only two weeks in the NICU, and that with significant colorectal corrective surgery.  When I asked the charge nurse about a week ago how long we should anticipate his being there, she listed the five things they look for before discharge and we should expect four to five weeks till we can take him “home”.  Honest, not just making this claim for sensationalism.  So it looks like one down and one to go. 

Where we left off was prior to Bryce’s surgery to remove part of his descending aorta where a very restrictive coarctation had occurred.  The pass through for blood in the effected portion of his aorta was estimated to be only 2mls wide in diameter.  2mls of line to pass all the blood needed for his lower half.  Needless to say, the blood pressure as measured from his leg was roughly 30 points different, lower, than that measured in his arm.  The condition would have inevitably led to heart failure if left untreated so there was simply no choice on whether to surgically intervene or not.  But as far as difficult heart conditions, this was a walk in the park compared to what we were prepped to deal with considering his dysplastic tricuspid.  There was concern that his heart would not tolerate the condition even until surgery so the administration of PGE was considered to keep his ductus aoratus open, but they decided to punt on that till the had to because of the side effects of this drug.  By keeping that fetal line open it would have allowed the heart to shunt blood away from the coarc line relieving pressure in the left ventricle.  However, his heart tolerated the challenges fine and no drugs were administered.  The surgery went off without a hitch and we have extensive photographs of various spots around this aorta, the portion removed, as well as the reconstructed descending line.  As you can imagine, this was a huge relief.  However, he was slow to shake the anesthesia, very slow, and his ability to breath unaided did not return till about 10 AM the morning after.  This response to the doping was so different from that of River that it caused concern and once he did start breathing consistent enough to remove the CPAP line, his breathing seems strained and even difficult.  An X-ray revealed that an air pocket had formed in his chest which may require the insertion of another tube to evacuate, but they wanted to take a wait and see approach before intervention.  As of today, it appears to be dissolving to the point that his breathing is returning to normal. 

So now two days post-op, he seems to be more like his “old” self.  Full of movement, responsive, even feisty.  There are always concerns over whether a small baby will be able to eat without regurgitation after heart surgery but Bryce has been taking food, albeit in limited doses through the coarse of today and only hurled back one feeding, and even then, only a portion.  They are going to continue to give him more milk, to the tune of roughly 5mls increase every feeding and they are also attempting to administer all through the mouth via the bottle rather than the feeding tube kept in on standby inserted through his nose.  They did supplement one time through that line, but he has been taking his limited food effectively.  Almost immediately after surgery his blood pressure in his lower parts returned to normal and there appeared to be an absence of any of the possible side-effects of his intervention.  On another note, he remains dependent on 100% oxygen to satisfactorily saturate his blood and when the gas is removed, his levels has dipped again to the 87% he registered at birth.  While this may become a bigger issue, the current thinking is to slowly wean him off the subsidy prepping his lungs to pick up the slack without a jolt.  If in the next few days he cannot sustain breathing only room air, I am sure there will other concerns. I have to wonder if some of this is due to the severe regurgitation through his Tricuspid valve.  And though his pulmonary valve does not leak and forward flow is clearly detected in sufficient amounts, the level of regurg would hamper the amount of blood making it to his lungs.  I asked the nurse about this today and she could not answer but thought it a good question, though she was also optimistic that he could be set to room air over the next week without complications as his lungs continue to relax and pressure reduce.   Presumably this process should also slightly slow the amount of regurgitation into his Right Atrium through his defective valve.   But at this point it really looks like we dodge the open heart surgical bullet and will be able to deal with his condition once his heart is much more mature – shooting for his teen years.  It remains our prayer that he will be able to move enough blood and his lungs work hard enough to capture the 21% oxygen in our breathing air to satisfy the needs of his entire body without supplementation.  But Bryce has been amazingly strong.  His heart miraculously durable, and honestly, we anticipate him jumping over this hurdle as well in short order as he has many others.  He clearly has a mission and is doggedly determined to carry on and carry it out.  Maybe that mission right now is as simple as getting back to his brother’s side.  They were after all so incredibly connected in the womb and identicals are notoriously connected even on the other side.  As a matter of fact, twins seem to develop stronger and faster when they are in close proximity to one another, even if they are kept in separate hospital cots. 

Interestingly, these two boys have not only demonstrated remarkable resilience, they have also already demonstrated quite different styles and personalities even as everything else merges more and more to mirror image.  Bryce is certainly the more assertive and feisty.  Maybe this is because Bryce, being the recipient, had all the real estate to swim within before the TTTS correction and before their membrane ruptured.  Bryce did continue to reposition himself in the womb even after they were in one sac as River stayed put in one position.  Then River was the donor, the trapped twin, wrapped so tight and pressed so hard against the wall that he had nowhere to move or go till the Laser made things right.  Perhaps its because Bryce has more fluid and higher pressure in his heart, his heart that is very noticeably larger than his brother’s, that makes Bryce more reactive and opinionated, even more active still.  One would have to think that with identical DNA, these very early forces must have played some role in shaping the basic personality types they might possess and setting them up to be both astonishingly similar yet blaringly different at the same time.  Regardless, if you have followed our journey to date, you will note how much we have to be grateful for, how incredibly heartened we are that these boys can and should anticipate growing up side-by-side and that against all odds, these two TTTS fighters have clobbered their opposition every step of the way and sought which tragically falls prey to far too many TTTS baby’s, even after intervention, both donors and recipients alike.  Their place and posture today is a true statement of divine grace.