Ronald Mcdonald House and Do your BEST!

So I kiss my baby good night and my mom and I head over to RMDH.  I get there just in time.  Although having lived there I probably could have been let in later.  They tell me the rules No drugs no drinking Check and check no spanking or yelling at your kids double check.  I thought that was such a weird thing to have in there, but I guess people get stressed and take it out on their kids.  Not this Mama! I love my babes I do appreciate that RMDH is protecting kids and families in all ways.  I check in they show me around. They ask if I have everything I need I ask for soap I didn't have any at the hospital to bring she says ok and comes back about 5 mins later with a big bag with a ton of items I didn't ask for but for sure needed it had shampoo and conditioner full sized, soap, toothbrush and toothpaste, and body wash.  What a gift!  I didn't even have time to think about these needs I'm sure they would have hit me in a few days, She was AWESOME!!!

I'm sure that you haven't been to a RMDH I sure hadn't.  It is exactly like a hotel with a full bathroom in it, we got a larger room since Big Daddy was coming with the kids so it had two queen beds and a bench seat that turns into a bed it can sleep 6 if needed.  There is a community kitchen and pantry.  You get a cupboard, an apartment size fridge and a bin in the big freezer. You are able to use their pots, pans, dishes, silverware etc.   Another great thing they do it dinner once or more a week.  Community groups come in and prepare the whole meal for free, which is a lifesaver when you  aren't thinking about yourself and don't think about food until you are ready to drop.  There is a kids playground on the bottom floor as well as a full laundromat with free laundry soap.  They have movie rentals if you have the time which you will one day.  All of this is done for free or very cheaply if I remember right $12 a day and they work with you on that.  I was fortunate and had medicaid so they pay for it.  In short I can't say enough about RMDH and how grateful I am to them for being there when we needed them.

I get woken up at 7 the next morning I really don't remember falling asleep I remember crying a bit and then getting it together and trying to stay up for Big Daddy and the kids but passing out instead :)  Big Daddy was here with the kids I was confused where are you?  he says here, I say Where?  He says standing next to the baby Oh !  I will be right there.  His brother who is 24 drove with him what a good brother!  He had called his mom to tell her what was happening and she says stop by here and I will get you guys food for the road good thing because he didn't have thought in his head other than get to me and the baby.  So little brother and him drive and drive and get lost in the fog and turn a 10 hour trip into an 18 hour trip , but they are finally here.  So I hurry up and get over there.  I walk in and they are all asleep in the lobby. Big Daddy says they didn't want to let him in to see the baby because it was before visiting hours he says I'm not a visitor I want to see my son.  Good thing they let him  I think his patience has worn thin after the long drive and all the stress.  I go say Hi to the baby and take everyone back over to RMDH to get breakfast of some kind and some sleep.  Big Daddy and I then go back to see the baby and his brother watches the kids until my mom can come and get them.  Did I mention I basically said to my mom that she would have to take the kids.  She does with no problem she makes it work.  I LOVE HER!

Big Daddy and I listen again and again to the parade of doctors and medical information. We find out surgery won't happen for a few days.  So we hold him and wait.We hear how he will look awful after surgery.  he will be very pale and puffy.  If you have surgery you retain water in your tissues they get rid of it through diuretics(meds that make you pee off the extra fluid)  It is so hard on Big Daddy  to see his baby sick I think it is all harder on the Daddy than the Mama.  It is hard for us and I mean awful , but for me anyway I just always believed he would make it through everything that would come his way.  I just felt like he was mine and he didn't want to leave me. I don't feel like Daddy's have that feeling, I think it's a very unsure time for them. At least for us he's usually on board with what is going on and has some control over every situation.  He doesn't like to sit in the hospital room as long as I do I would stay all day and not think about breakfast or lunch he on the other hand needed to eat so we would come and go and sleep at the RMDH at night.  There is minimal sleeping in the NICU or ICU with nurses in every little bit checking this or writing that.  We get into the groove of things and have somewhat of a routine.

There is a nurse around day 3 or 4 and she is the first person to actually say he will make it through surgery I didn't know how much i needed to hear that.  Probably such a simple statement to her meant my world and I cling to that and I believe her. She was right!  We meet our surgeon Dr. Permut.  This is the man I love the most he literally saved my sons life.  I've told him as much and he couldn't be more humble about it all saying it was the baby that did all the hard work.  What a rock star he is and his fellow surgeon that helped put his heart back together was Dr. Mcmullen also love him.  We meet the anesthesia team this is the main doctor and his fellows also doctors but they are still learning.  A heart baby is extra dangerous to put under I'm not sure why exactly other than his heart is complex and he doesn't have good or normal blood  flow to his lungs but they are ready for him and I have every confidence in them.

The day arrives December 22nd 2009.  We get to the hospital at like 5 or so to spend time with the baby.  I'm ok until we get out of the car  I break and ask Big Daddy what if he doesn't make it I say I  won't be ok.  He says don't think like that and he hold me  I say ok ok He will be fine and I get it under control  sort of and we walk the long walk to the NICU. I think I quietly cried the whole way  Longest walk ever by the way.

We go in and hold him and love on him and he sleeps through it all.  Every time the door slides open I think they are coming for him.  My heart stops Every time.  Finally they come and we get to walk him out and kiss him goodbye and I tell the DO YOUR BEST!  Take good care of him and do your best work!  I now tell them this before every procedure and all has been ok it is my good luck to my little man and it is superstitious and silly but I need to do it.  They let us walk as far as we can and we watch him go away Big daddy says he looked at us and smiled on his way to say it will all be fine I don't remember that but I was a mess at this point.  So we go to the ICU desk and talk to them and we go to the lobby and wait with our pager in hand I check it constantly we don't get an update until around 9 am and that is just to say they are starting.  Something i know now that I didn't know before is that is takes a while to get things set up.  Things are a blur on that long day but I remember not wanting to leave they tell you that you can.I curl up on a small love seat and fall asleep with the pager by my ear I don't eat breakfast when lunch rolls around Big Daddy has to go get us lunch by himself I don't want to leave and miss something.  He comes back with pizza, Uno and scrabble and magazines to look through.  Games and magazines from RMDH again they are helping out.  The Surgeon comes out around 7 or so and says all is well we should be able to see him soon.  Soon means in like a hour or more.

We hold hands and walk back to the ICU.  There are about 8 nurses and 3 doctors and a respiratory therapist.  Dr. Permit walks us back says he's puffy.  Big Daddy says he doesn't look that bad Dr Permut says maybe you should be a Dr.  We must have had a strange reaction to our sick baby he seemed surprised we weren't more horrified.  It is ALOT to take in but I was of the thought that now he's better.  Other than all the chest tubes ( he has three) and breathing tube, iv's and wires he doesn't look awful.  There is a pink patch over his chest which is still open and will be for quite a while.  He also has these blood tubes going into and out of his heart this is ECMO.  It is a life support system that scrubs your blood like bipass but you don't need to be cold to use it. He is on ECMO so his heart can rest it is a very tired heart at this point. It is a dangerous machine and the longer you are on it the more dangerous it becomes. It can get clots in the line and give you a stroke.  All things I know now that I did not know before.I am surprised at how loud his room is it is constant beeping and something that sounds like the ocean( it's his chest tubes) and the ventilator also makes noise.  I touch his foot and say goodnight to my little man and we go back to our new home and eat at the tail end them putting it all away.  What nice ladies we really needed a great meal and we got one. And then we both went to bed.  What a day!