1 month countdown

1 month from today Macsen will have his 2nd surgery @ CHOP with Dr.Spray. It's coming. I don't want to live the next month in countdown mode but it is tough not to. This inter-stage period is so.... stressful to say it will be a relief to be out of it is an understatement. This is his super maximum vulnerable time - after this next surgery he'll be stronger and we can live a more normal life. That's the plan anyways and we all know what they say about best laid plans. But I refuse to think that way - Macsen hasn't let us down yet - he's fought this crazy heart diagnoses, he's fought a virus and now the flu - he's a fighter. A tiny adorable little fighter.
Since this week - weekday week- is over now I can say without fear of jinxing it - that this is our first week we haven't seen a doctor - or 2, or 3 since M was born. Yay! It was good. The girls are both sick - K somehow just got the stomach flu C got 2 weeks ago... weird how that works. And both seem to be having a relapse of the same cold symptoms I thought they were over last week. This cold season has been the worst for us - despite keeping C out of school, and limiting our exposure to friends, curtailing all outings except for groceries or doctors appointment we have been fighting one bug or another almost since we've been home. I am almost ready to invest in hazmat suits for all of us.... maybe not that extreme yet but I am looking into buying cleansing aromatherapy oils (insert windchime audio and visuals of healing crystals here.) Willing to give most non toxic things a shot.
We are also keeping the girls from the gym nursery for the next month. They loved to go and were most often the only kids there. They had the full attention of the super nice nursery worker and would strip down to their skivvies upon entering the door at home and jump right in the shower to get rid of germs. Not going to chance it now. We have to get everyone well.

That being said I think we will swing by the beach after our next cardiology appt in a week - we did this for  the first time last week and the girls - and by girls I mean me too-  had such an amazing time. It had been a really bad week with the flu diagnoses and a few sudden losses in our heart baby community we are now a part of. There is no better place to let go of your fear, your sorrow, the weight you carry around on your heart - no better place to set it down then at the beach.... for me anyways. We looked for shells, got totally soaked and sandy (thank goodness I packed spare clothes for the trip) and just played. Macsen wasn't totally sold on the whole beach idea - in fact he was much happier in his carrier covered up. But for me, it was just the recharge I needed to face the rest of January - not just face it, but enjoy it. Enjoy my baby who is growing, slowly but still growing. He hit 11 lbs finally! And is getting too big for his clothes - love that. He's hooting like an owl now - cute even at 4 am when he calls for me. And today he drank 100 ml at once - that is huge! We've been getting by on 15-30 ml every hour for months now. 100 ml means maybe a few hours of sleep - in a row - consecutively. And with the cutting out of Prilosec and Zantac he is only on 1 med everyday - Lasix - and his aspirin 3x/week. Incredible! Really, looking at photos from my pregnancy and I wish I could reach through time and tell myself how great life is right now - how amazing our little man is, how blessed we are.

Walk on Water

Reading a great book called "walk on Water. The miracle of saving children's lives" by Michael Ruhlman and it is fascinating. It doesn't read like a textbook - in fact it is a real page turner. Written by an author who spent several months in one of the top pediatric cardiology hospitals in the US it gives me a glimpse of things I will never ever see - things Macsen will have to go through without me by his side. And while reading the accounts of open heart surgery I have to remind myself to breathe and to stop picturing Macsen lying there I am devouring the depth of information Ruhlman put into it.
I had to stop reading to quote an excerpt because I know so many people still don't understand why we felt we had to go all the way to Philadelphia for Macsen.
"Obviously, as in any profession, there must be a range from worst to best, with most falling somewhere in the middle. But here, where the stakes were so high, how could anything short of the best be tolerated? How could a surgeon be on the low end of the scale and still be allowed to operate? A sloppy accountant was one thing, or a lazy carpenter, or somebody just OK at most any job - but an inferior children's heart surgeon? Yet there was no oversight at all over the peds centers, except where the surgical outcomes were completely unacceptable, or where pressure from the media and outraged parents, perhaps sparked by a whistle blower in the hospital, prompted a widespread investigation. "

That is scary and I have seen it over and over again in the 8 months since we were diagnosed last year - hospitals attempting to do complex surgeries on these babies but not having the expertise or experience to do so successfully. So many parents trusting then transferring - hopefully not too late.

Excited to read more!
And here's a good night picture from Macsen - day 5 of the flu was much like day 4. Hopefully tomorrow we will be on the other side if it!

Woke up on the wrong side of 2013

Sheesh! This year is kicking our butt! After many stressful days, many texts and calls and visits to doctors in 3 states, and a fortuitous find on Google we figured out Macsen's bloody diapers were caused by one of his reflux meds Prilosec. Once we cut it out there was no blood within 48hrs and he's been blood free for days now. Phew. I mean PHEW!!! I can smile and laugh again and shake my moneymaker to Just Dance 4 (which Aaron sweetly taped and plastered on FB.)
Round 2. The flu. Our eldest got feverish and was throwing up but tested negative for the flu. Put her on Tamiflu anyways b/c of Macsen @ home. We all get sore/scratchy throats and coughing - no fever or nausea. Macsen starts coughing too and is unhappy. Bring him in and Tadaa! Positive flu test :( Our triumvirate of doctors discusses admission to the hospital but in light of M's healthy appetite today and lack of scary symptoms they agree we can monitor him at home. They advise me to "watch him very closely and bring him to the closest ER at the sign of any change." Gulp. I may never, ever sleep again.
I don't know why 2013 is determined to break us down so quickly. What did we ever do to you 2013? We hardly even know you. Dang!

The case of the bloody poo

I probably shouldn't blog right now as I am feeling ridiculously overwhelmed, discouraged, stressed, weepy. I'm a mess. A week ago today while my sister and her family were visiting I saw specks of blood in M's diaper. I took pics and sent them out to his various experts. Consensus was to keep watch but as long as he looks good - eating well, happy, gaining weight, good oxygen levels and pulse then we do nothing. I have been off dairy since 36 weeks pregnant b/c these heart babies can have gut issues too and milk protein allergy is usually the prime suspect. So I cut it out long ago to eliminate that possibility. Over the holidays I wasn't as diligent and didn't forgo every cookie and holiday side dish because it could have a little milk in it. So I buckled down again and cut everything out - no chocolate, breads, anything with casein, soy, wheat.... He had diarrhea and was pooping almost every hour. We had a pretty bloody one New Years Eve morning - and felt he needed to be seen by a gastroenterologist. we brought him to Pensacola - so much for our appt free week:( Milk protein allergy is the doc's best guess but he wasn't Very concerned. The blood dwindled to almost nothing and he seemed to get better.Then last night before bed a few flecks - oh no- then at 4 am a blood drenched diaper. 95%blood. I texted it to my husband who was at work and he came home. Macsen seems fine though and after that horrible diaper and one 1/2 as bad an hour later there were no more bloody diapers all day. The team has been consulted with no consensus this time. CHOP team feels as long as this is his only symptom and everything else looks good then we just stay the course - keep on with the current meds (lasix, Prilosec, Zantac and baby aspirin 3x/wk) and unless his sats tank, pulse rate changes, color changes or he stops eating/gaining don't think I should worry. His local card wants me to stop the aspirin until Monday - I agree b/c the super bloody diapers were always in the 8-12 hrs following his aspirin.) the GI doc wants me to stop with the breastmilk and put him on special formula which after all the months of diet restrictions and round the clock pumping you would think I would be ecstatic to hear that - but no, I am heartbroken. I don't want to believe that we will never nurse again (we were going to really try again after his next surgery when we no longer have to track every ounce and only give him hind milk.) I won't be able to comfort him in that way ever? I can't believe after all these months with normal baby poo now suddenly he would be intolerant to my milk. He has no other symptoms of an allergy.
This week our oldest got the flu - probably picked it up at the hospital when we went to the GI doc. Throwing up, fever, chills,shakes... Thank God Aaron was home because as hard as it was on her it could easily kill Macsen. So there she is shaking, crying, feverish and my first thought is to hold her - comfort her- and as I reach out my arms I hear her brother cry and know if I hold her now I will need to shower and change before I can hold him. I tell her i can't hold her now and her little face crumbles and my already beaten up heart breaks in 2 and I feel like the very worst mother in the world. Over and over in my head I hear our nurse tell me "you are his first line of defense" and I feel like I can't miss anything or he will die - are his hands colder today? Does his nose look more purple? Is he breathing faster? Did he just stop breathing? Why isn't he eating as much? Is he peeing enough? Why did he lose weight? I am going crazy with worry about every little thing with Macsen and my girls are being raised by Disney Movies and whatever looks interesting on Netflix Kids. :(
He is now sleeping soundly on my pillow- beside the 2 (TWO!!!) sleep positioners that didn't position him to sleep tonight.
Tomorrow we go in for blood tests and just get reassurance that he really is ok. That is so important - I feel so sad, and lost... I barely sleep with the round the clock feedings and bouncing and walking and pumping and washing and feeding again. And in the morning our 2nd appt of the week when we weren't supposed to have any.