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ours around the clock he has his own private nurse assigned just to him they know him very well so they know what to look for and what s normal for him and i m grateful for how well she s being taken care of at the ronald mcdonald house and what a wonderful job they did with the 6 year old while she was there they were amazing the families there are all dealing with such hard circumstances it s hard to see your circumstances as worse when you see some of the other hardships and traumas they re contending with everyone s in the same boat trying to hang on to hope and be there for their child i ll never ever pass by one of those boxes without dropping something in i never stopped to think it would be my family in need of their houses but it is so many of us seem to think we re somehow exempt from that one it s a hard wake up call to realize we re not it was a very nice very needed weekend for the family myself included i needed to know where things were at for the wee one who honestly is soothed into sleeping the day away and is only awake with his eyes opened maybe once a day when there s some kind of discomfort pain involved i needed to know what was true because i knew it wasn t what gets posted or photographed and i needed to get some time with the mom to challenge some of the things she just wasn t seeing it s the perspective that comes with fresh eyes even if she didn t want to hear it i know she did there s a hard road here it s not suddenly become easier because a surgery was successful the measure of success was in surviving the surgery and the recovery and we re not there yet halfway maybe but that other half counts for a lot posted by mel at 6 54 pm 11 comments sunday october 18 2015 the wee fella with his stuffie posted by mel at 3 06 pm 4 comments 2nd place cheer i am a freaking tired nana sigh i won t do less than i can but i fear i ll burn myself out before we end this race lol mostly cuz this bird ain t a chick dontcha know this weekend was as is every weekend bug time and i like to do during my off time why would it surprise me that bug is the same way we cut back plants that froze in the 27 autumn morning it is autumn we bagged up 175 treat bags for the annual trick or treat night and me made a ghostie tree house decoration which i ve yet to make room for ummm mostly cuz i just returned home bug and i spent the night at a hotel so we could arrive bright and early to get ready for her cheer competition i wasn t about to try to load her into the car so we could drive an hour and a quarter and arrive at 6am to get hair done and make up applied 6 5 years old and she needs make up to bounce around and tumble and wave pom poms ahem yes well we stayed at a hotel and had a girl s night out while grandad stayed home and peacefully watched the baseball game lol and nana took her where she needed to be so they could take 2nd prize not bad for a bunch of adhd kiddos lol omg those ladies that coach those kiddos deserve a medal i swear and next week we ll be in philadelphia for a long weekend the bug and me the mom wants to see her kiddo she s not seen her for 5 weeks and she needs to see my mom which is probably true after her week sigh it s not been a very happy week but we ll just keep trudging what else is there to do pray and keep doing whatever gets placed in front of us that s all we can do right now i m looking forward to seeing the wee fella and his mom and i m looking forward to the 4 hour layover in chicago with the 6 1 2 year old k one of those 3 things is a lie lolol posted by mel at 3 05 pm 1 comment wednesday october 14 2015 four months plus 9 12 weeks they tried to extubate the wee one monday this while the parents were pulled together for a family meeting with the medical team surgeons cardiologists occupational therapists and all their fellows that gather round them like a flock of geese the removal of the tube came with a bit of drama in and of itself the surgeon argued with the cardiologist before the weekend that the wee fella needed a few days of rest before they removed the tube they d just inserted a tube to drain fluid from his lungs and he thought the month old baby could use a weekend of recuperation the cardiologist argued that the process needed to begin the sooner the better the surgeon won he s the head professor for surgery at the university but then the cardiologist is the professor of cardiology talk about an a team lol the weekend was far from stress free for the wee thing but the level of issues didn t reach high risk the tube came out and the family met for over an hour with the a team at this point they see the recovery much as we do filled with twists and turns and issues which need to be attended to right where he s at he s progressed drainage tubes are out pacing wires are removed and they ve started him on feedings through a tube but it s been a slow progression wrought with one issue after another the chest tube to drain the fluid that s surrounding the lungs was a result of the feedings they introduced each step forward seems to come with a cost the bottom line is the baby won t come home between now and the second surgery which is suppose to occur at 4 months of age that s three more months in philadelphia if complications don t push the surgery back a month or two and then there s the recovery time from the second surgery 9 12 more weeks at best we re looking at january for surgery that s if the surgical team doesn t take off for tahiti on the holidays and if there s no complications insert sarcastic laughter and then there s the 9 12 weeks recovery time that pushes us into may may m a y sigh the tube went back in last night he was struggling so hard his chest was heaving and the girl was concerned because he looked terrible we knew the odds were they d have to re intubate but still the surgeon unaware the mom was behind the curtain pumping breast milk entered into the room and talked to the wee one lovingly calling him an ungrateful little jerk after all the arguing he d done to get him the weekend of rest darn that she didn t take a photo of his face when the she popped out from behind the curtain and whole heartedly agreed lol it s hard being here while all that s going on there knowing we don t get to have the wee one home between surgeries that he ll continue to live in a hospital isolated from his family and his home knowing the girl will continue to be there separated from her daughter and partner i need to stay grateful that we re this far that the wee fella is continuing to fight to come out the other side of this and i need to give note to the fact that the mom who s stayed with him the entire time except for one night at home to make special cookies for the staff at the hospital in iowa yes she is her mother s child has an office in k o p which is right down the road from philadelphia and that her boss has approved her working from the hospital from the office in k o p from the room at the ronald mcdonald house where she s staying he doesn t care where she does her job as long as she does it i need to stay grateful that the grandmother who s retired can stay with the dad during the school week and help with the daily stuff while the 6 year old skips off to school if none of that were available i don t know what we d do and where we d be in this whole ordeal what young family what old family could physically emotionally financially afford to stay with their child for six months while they fight for their life a thousand miles from their home i don t believe that the second opinion just happened to be in philadelphia any more than i believe the fact that the office she worked from multiple times a year is right up the road is a coincidence nor do i believe he randomly ended up with the a team that he has and i don t believe he was gifted to our family by a fluke but i do believe in prayer i do believe g d hears and i know his hand has been in this one since before we knew what ailed our wee little fella and so we all continue to pray and hope and wrap our heads and our hearts around what we get to do today to make a difference in the lives of the people we care about and hugely love posted by mel at 8 50 am 5 comments monday october 05 2015 4 weeks 2 034 pounds heart warriors that s what they call babies with congenital heart defects that s what we have a heart warrior he s four weeks old today and they ve been able to whittle him down to four pumps we started at 14 i d say that s great progress chest is back together they removed the oversized bandaid 2 days ago there s talk about weaning him from the ventilator and potentially moving him from the cardiac intensive care unit to the critical care unit maybe by the end of the week maybe by the start of next week when he turns five weeks old g d willing it s a bit of a haze it seems longer than four weeks but it s only been four maybe that s an indicator of what the heaviness does maybe it s just the nature of the beast there has been a lot of good in the past week a bit of drama which the wee one is becoming famous for a few tears and a whole lotta loving seems circumstances push the envelope on the loving bit at least it does for a whole bunch of us there are those that go the opposite direction the ones that distance themselves emotionally from the details and day by day hour by hour reports on how our baby is fairing it s their way of insulating themselves or attempting to convince themselves that they ve insulated themselves i doubt it will work and because it s fairly readable i doubt it s understood by those on the other end of the spectrum the ones who wear their heart on their sleeve and get teary asking questions and talking about the little fella i don t land on either extreme i switched into doing mode and find myself in tears at odd times like dining out for lunch and losing it as a group of gals set up for a luncheon date with a new mom they were showering with presents and attention i remember the fleeting we should have been doing that for the girl thought seems people accept that from me the doing mode not the teary eyed stuff people get nervous when that happens the good news is i know how to self correct those teary eyed moments are very brief i m too busy to indulge there s the job to do the house and yard to maintain himself just returned from visiting his mother and kids and a six year old that needs consistency and stability and routine so because i promised i d take care of her along with the grandmother that s what i ve been doing and checking in with the girl in philadelphia and doing errands for her and tending to the house and some of the yard work there but we took the 6 year old to the pumpkin patch and the pumpkin fest that we ve done every year since she came into our lives we bought gourds and two big pumpkins for her house not as big as the twothousandandthirtyfour pound winning pumpkin but bigger than the ones i took home cuz none came home with me himself says it s just a plot to make a return trip to the pumpkin patch so i can buy more pumpkins and gourds of course that s true duh anyone who knows an ounce about me knows that s true i ll also have to buy for the 6 year old again cuz she ll be with us for halloween and she ll need a pumpkin here too he hasn t figured that out yet nor has he counted on the pumpkin we ll be carving for the wee one yup i think we ll carve that pumpkin a simple heart after all the wee one is a heart warrior posted by mel at 10 25 pm 3 comments monday september 28 2015 the guardian of the feeder when you finally get an evening free this is what you opt to do lol nice of her to sit mostly still for me posted by mel at 6 53 pm 1 comment 3 weeks and 6 and a half years they closed his chest on sunday much like the other surgery they struggled to get his blood pressure regulated it would seem after a couple blood infusions that he s doing much better the patch over his little opened chest was bad enough add paleness to that mix and i didn t share any of the photos with bug until i felt they were okay enough to share with a six year old we ve been up front with her best we can since he was born she no longer talks in terms of when her baby brother comes home it s now if he comes home even with a successful surgery there s still a long healing process with loads of complications that could change everything today he s three weeks old we didn t think he d ever see that and we re all blown away and so blessed that he s been able to the surgeon has called the hospital every two hours since the surgery as the professor of surgery he s got a vest interest in the wee one being able to go home with his parents even if it means some degree of medical intervention the parents want that the desire is to give their baby a chance of life with a loving family no matter the circumstances there s no timeline no guarantees but the girl and her partner want a chance to bring the wee one home and to just love him because he s a precious thing i tell people the girl s not my daughter my child my anything she s a child of g d and i have the privilege of having her in my life to love the girl has a clearer understanding of what that means today she s done a wonderful job in the stinky circumstances i m proud for her and proud of her she s had to make decisions i never dreamed she d have to make and made choices based not on her own selfish desires but out of love we re so immensely grateful and overwhelmed by the loving support of people we know and so many we don t know but surely want to come to know friends family friends of friends family of friends coworkers and compassionate strangers have given to help with costs so the girl and her partner can be with the wee one there s been so many it s been emotionally overwhelming to be in the circumstances we ve been in and it s been equally emotionally overwhelming to break through barriers because someone let people know there were barriers that were getting in the way physically emotionally financially and spiritually frankly we were all too busy dealing with the chaos and pain that came with the package but that didn t stop others from chasing solutions and making things happen i get teary eyed just typing that out so may people have reached out to help it s been amazing today the wee one is three weeks old we didn t anticipate having him this long we didn t anticipate there was another solution out there even if it wasn t a perfect solution it was a chance and he s beat the odds so far not without major amounts of drama i swear he s a drama magnet but three weeks is a miracle every day is a miracle he s got 2 parents that love him without fail and a big sister who s rooting for him and wants him to be able to come home she s six years old and shouldn t have to contend with this but she s contending with it well asking hard questions and supporting mom and dad with great love and she loves her baby brother she loved him ...