About Me

Boise, Idaho, United States
I am a stay at home mom to the three best kids a mom could ask for ages 7(boy)2(girl)and 1(boy) We are a busy normal family

Wednesday, February 23, 2011

Happy/unhappy New Year 2010!!

Happy new year to everyone here's hoping for a better year :)
The baby seems to be so much better after his second surgery than he was the first time around WE are still waiting to see what happens but definitely better at 16 days he is so sweet and I can't wait to have his chest closed and the breathing tube out so I can hold him and hear his coo at me he's a lover already you can just tell. This was a huge surgery as well but he was older and is very stable Hopefully we will start the new year with a bang and on a better note

Big Daddy and the kids flew home tonight It was a last second thing like everything seems to be in our lives at the moment but good that they are home in time for school etc.

This was written the actual day of New Years Eve 2009.  That was a awful day for me.  My mom and I took my family to the airport and they really had to zip to a last second flight.  A Quick kiss and they were off.  I was one Sad Mama!  My mom dropped me back off at RMDH and I went to dinner.  RMDH has a dinner for most any holiday and so all these families were around me smiling and laughing and I struggle to keep it together in line.  I'm wishing I had kept them here.  I eat and go cry myself to bed.  I'm so exhausted all the time.  At the time you don't realize it but it is stressful.  I don't remember feeling too stressed but you are.  It's is such a pressure you feel like everyone is depending on you and they are. I still to this day feel like he stayed alive for me because I was there every day and I wanted him with me so much!  2 and 3 weeks into our stay nurses start saying things like it's so great that your here and it's so great that you visit him still. I say with I'm sure a confused look where else would I be?  What do you mean?  They tell me some parents stop coming they can't take seeing their kid sick so they stay away.  I am SHOCKED!!!  I would never!  I can't think of anywhere else I would need to be he needs me.  I understand that this is a super high stress situation , but still your baby needs you.  Another curious thing to me is parents who scream at the Dr's and nurses.  Why yell at someone who is taking care of your baby?  What if they are a bad person on the inside and harm them when you are not there?  Or decide to give them less than great care?  I never had this happen to my guy in the ICCU But on the floor however there is a nurse we will never have again.  I do not trust her and she has done harm.  I think she is too old to be nursing and I think she got my son mixed up with another patient and pulled his IV.  If you have a heart kid you know they are super hard to get an IV on you never pull it even if they don't need it.  Rude stupid nurse!!!  And she is RUDE  and made me cry both times I had her.  Actually if you have anything wrong in your body heart prob, blood disorder, cancer whatever your veins grow funny directions.  A nurse told me that.

Surgery two...

His patch starts to bulges with all the blood underneath.  They make the decision to take him back to surgery.

December 30th 2009 Here we go again.  At this point and like 80% of the time you just want to scream how unfair it all is, but that will get me now where so we wait again pager in hand.  They take him back I tell him do your best and take good care of him.  He does and 6 hours later this time Dr Permut comes out and says there was a lot of little spots that were bleeding and he thinks they have it under control he also says that his rv to pa conduit they put in which is artificial was completely blocked off with clotted blood.  They are hoping it will not do this again although they did not expect it to the first time.  Dr Permut says he is surprised how good it all looked in there considering what all was done to his heart.  Whew ok so we can go see him in about an hour His surgery started at around 2 pm and he was out around 7 pm We had been there since 7 am it was another long day.

Post surgery and Christmas

December 23rd 2009, I wake up super early and call the ICCU right away. His night was fine he's doing as expected so far. Ok we will be over soon. I get up get dressed and I'm ready to head over right away.  I expect to spend my days at his bedside that's what you do when your kid is in the hospital right?  Well We eat and head over.  He's more puffy that he was the night before and there are still a lot of people around him always busy.

      There are two ecmo specialists one is training and there is a nurse and a respiratory therapist that comes in once an hour.  There are fellows, his cardiologist and the main doctor on the floor.  They let us sit down but warn us not to touch ECMO or bump the cords they can easily get a clot which could then be fatal if they didn't catch it.  Big Daddy and I sit for a second I ask if I can touch him and if he can hear me.  Yes and yes but don't touch a lot it may overload him.  He is totally sedated so he is feeling no pain and they will start to wean him somewhere down the line.  I remember the loudness of the room the beeping and whoosh of the chest tubes. The pumps and monitors.  The had probes on his forehead checking his brain waves and a probe over his kidneys.  It is such a weird feeling to want to hold your baby and not be able to in short it is torture!  and they are on me to pump which I want to do but it still isn't going right. UGH!  I was not pleased , but he was on the mend right?

    Wrong, the next day we walk in and he has some blood showing through on his chest dressing not good.  I point it out it is assessed and they decide it is fine.  Being that I can do nothing else in a helpful capacity I watch that dressing like a hawk.  If you look at the pics you can see what looks like a sideways eye opening well, you could see the blood starting to accumulate there.  Again they look call the head ICCU Dr and it's fine we will watch it.  OK, We go get lunch and come back to visit him again and it is really pooled in there and is starting to leak out the top.  Again I bring it up and they look at it and decide to call his surgeon.  They still watch it but he is concerned.  If you could meet him you would just know that he is pretty easy to read and he is worried in turn I get worried.

It's Christmas the babies first and he will be sedated and completely unaware. Having two other kids that were ripped from their nice happy normal lives where Mom is there 24/7  we make the hard decision to spend Christmas Eve and Morning at my mom and dad's to give the kids the best Christmas we can.  It was so hard for me to leave my baby all by himself  on Christmas.  I feel like the worst mom ever!  It's like choosing who is more important.  My original plan was to have Christmas a Ronald Mcdonald house in our room.  Making my mom pack up the kids and everything she is amazing and was going to.  After a lot of coaxing from Big Daddy and the Nurses we head out.  I feel sick to my stomach the whole time.  But I sure feel wonderful when my big kids are so happy to see me!  I LOVE my babies!!  I would have 100 if I could they are that fabulous.  Our Christmas was brought to us by RMDH   they had a day where you could go to this big room and pick out a present for your kids ,not just your sick kids but all of them.  They got a filled stocking each, stocking stuffers  on top of that, a toy, and other little stuff they even had wrapping paper.  My mom literally bought everything else.  Big Daddy did grab Sassy's big gift and a smaller box of stuff I had been squirreling away.  We also stopped and did a last minute shop at Target and then Fred Meyer.  I think our kids had a Wonderful Christmas despite all the insanity.  Luckily they are good kids and grateful for all they get.  Around noon Christmas day I start feeling really guilty about the baby and we can't stay for dinner.  We kiss goodbye and I cry and we head back.  That was one of the hardest things for me was having to focus on my baby and not the other two.  Whew talk about questioning if you are doing what is best for your kids or not that is a struggle!

Sunday, February 20, 2011

It's weird now...

This is an out of turn post with my boys story , but now that I am a Heart mom I feel so close to all that are.  I literally heard about a complete stranger who lost her beautiful boy he was about  a year I think.  He had a different heart problem HLHS  Anyway  I go look at the link read something the mom writes about saying goodbye and burst into tears. My heart breaks for them. I'm so grateful for my boy's stability at this moment!  This poor Mom and Dad are shattered and sweet baby Travis is just gone so quick!  Whew  They donated all his organs they could and I don't know I would have the strength to give that gift.  I even have friends whose sweet babe has a transplant heart so I know what it means to that family.  All my thoughts and LOVE go out to his family tonight, maybe yours could too.  Snuggle your babies extra tonight

Wednesday, February 16, 2011

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!

Tuesday, February 15, 2011

Baby number 3!!!

  On December 15 of 2009 I gave birth to our third wonderful baby.  He was an extremely sleepy guy which was odd to me my other babes came out wanting to eat.  I got him to breastfeed maybe twice and it wasn't quite right. My mom radar was going off in a major way.  So I ask the nurses and doctors and get the response "Some babies have a hard sleep pattern"  numerous times from multiple people.  I keep at it He's not right.  So the next morning around 4 am I send him to the nursery which I don't normally do.  He wouldn't calm down , not that he was crying he was just squirmy and restless. ( I find out later this was him starting to struggle to breathe) Again Weird but I'm tired so fine.  I get woken up at 5 am they have taken him to the NICU they think he has gotten breast milk into his lungs, my heart drops.  I get up and call Big Daddy who has the other two kids at home so he can take our lego head to kindergarden and then head back over to see us. He says ok and starts getting ready.  I get down to the NICU where I have to scrub in like a doctor weird thing to do??  And I go back and see him as we are walking they tell me they aren't sure what is wrong with him but it's not aspiration(inhaling fluid into your lungs)  My heart sinks again.  I go in and he is intubated( breathing tube)  My heart breaks. 
   There are people everywhere nurses and doctors.  One in particular I recognize from somewhere, she is talking to what I can now assume are students and looking at  a moving x ray ( It was an echo of his heart) They still don't know what's up so they send me back to my room after a while and I call Big Daddy again he chokes up and is on his way this is now around 7 ish so he drops off our lego head and comes.  I head back down to the NICU and wait.  I walk in the babies room and some guy who looks like Santa says to me "Has anyone told you what's going on?"  I say no He says It's his heart and I lose it quietly I am thinking my baby is going to die.  It was a hard moment I'm crying writing this and it was a year ago.

So Big Daddy and little Sassy arrive we both need to go back and talk about the baby We leave her with a kind nurse who we don't know because kids can't go into the NICU.  So Big Daddy and I hold hands and go back and see our very sick little boy.  Big daddy breaks,  it is harder for me to see him cry.  Dr. Walker introduces herself and we go to a room to talk.  We hear what is wrong with his heart, Transposition of the great arteries, interrupted aeortic arch, VSD, ASD, pulmonary stenosis All of this is way over my head at the time although she has pictures I think I'm in too much shock to get it. We hear how he needs heart surgery and they can't do it here in Boise.  He needs to go somewhere special are options are Seattle, Utah or Portland.  Seattle is my choice I grew up there, well just north in Snohomish so I know the area.  My mom and dad are there.  We have a plan and i think its surgery that day. ( Surgery doesn't actually happen until day 7 )

So I head back up to my room to get my stuff together the baby and I are going on a medical flight to Seattle now!  I get up there and the nurses want to discharge me What? I have to go is about all I can say my baby is sick and I need to go.  I am in a hurry and they don't get it.  I have to get prescriptions that I don't care about and sign papers and all stuff  I don't have time for.  I'm sure that those nurses have seen a crazy mama before so they are nice and calm. I do have the presence of mind to call my sons kindergarden and tell them what is going on. They are so wonderful and take care of him until Big Daddy can get there they feed him lunch they are just above and beyond.  I also call my mom who is flying in the next day or so and say Mom don't cry keep it together you can't cry right now the baby is sick he needs major heart surgery we are coming to Children's in Seattle can you come?  She of course says yes because she's a great mom I sure love her.

There is a social worker and to this day i don't know her name due to the fog I was in she sets us up with a place to stay ronald mcdonald house I have no idea at this point what it is or why I need it but i call them anyway Luckily they have room.A room that was home for three longs months.  Being that it is 9 days before christmas and My mom and brother are coming here for christmas Ther is no extra money for Big Daddy to drive there let alone fly so the social worker gives him gas cards she is a gem and I will find her card someday when I have time to go thruok we are on track to get him fixed.  They also give me some nausea med that sort knocks me out for the flight  Its a tiny plane the baby, me, those two nurses and the pilot it was bumpy and TINY!!!

We hit Sea-tac, again in the ambulance and then into the ER.  We walk for a ways and then there are about 15 nurses and docs swarming my baby as I lean on the door and just watch and try and listen and make sense of  all their medical talk.  The docs in Seattle are saying they wouldn't have him sedated that much he's ok to be awake  It sounded like they messed up I'm hoping they didn't. A NICU doctor notices me and asks if I'm mom asks if i want a chair I say no I'm fine he gets me one anyway( Love him) He holds my hand and tells me he will be ok we are in the right place.  I remember holding this strangers hand for all it was worth and he just sat there with me for a while.  What a comfort to have a hand to hold.  So they get him set up and I can finally go in and sit with him he looks so little  and he is not even two days old.

They tell me he can't breast feed they don't want anything in his belly before surgery.  I breastfed my first two for the first year.  They tell me I can pump for him.  Weird so Weird to me!  They bring me a pump like I'm supposed to know what to do with it.  Pumping is AWFUL and does not go well at all.  If I knew this would be important in my life I would have gotten a job in the designing of pumps and the leading of using one  They teach it all wrong.  I  eventually figure it out but stress of a very sick little boy does not make it easy.

That had to be the longest day of my life.  I was so exhausted emotionally and physically I am amazed looking back at how long I lasted.  The Doctors then started pouring in I remember asking a million questions no one would tell me yes he will make, it was always we will have to see.  Patience not a virtue I was born with is now mine.My mom is there with me now and we cry hard for a min then we get it together and are pretty OK for the rest of the time.  I remember the Doctor who told me if I had more kids they would most likely have a broken heart too.  I told Big Daddy no more kids!  I had wanted 5 or 6,  there went that plan I wouldn't do this to another kid.  I keep asking questions the same ones over and over until I have some kind of grasp on it all it is a tentative one but there.  I remember meeting the head cardiologist Mr McQuinn. He is who they call when they can not figure out what is wrong with your kid he's probably the most intelligent person i have ever met in my life.  That first night I remember him, but I have zero recollection of what he said my eyes were crossing.  It was time to go sleep for the night


A first post I'm excited! Let's talk about us! I write this blog in hopes of  helping other moms be better moms. Being a mom is a hard job and being a great mom is even harder.  I have a lot of strong opinions about many things and I hope they make sense.  I have three kids 7, 2 almost 3 and 1.  All my kids have the same Dad we are together and in Love although not married.  Most days this doesn't matter but I do get irritated at having a different last name than my kids, Oh well some day right? 

My 7 year old, Lego head is the most loving boy ever!  He has a big heart for family as well as friends We couldn't be more proud of him.  He's a boy scout, Lego lover, and wonderful big brother.  My Sassy girl will me 3 in March and she lives up to her name.  She is my pistol a red head through and through.   She is all girly all the time she  loves princesses, pink, and being beautiful. Finally my Handsome boy he is 13 months and had major heart surgery at 7 days old.  We spent his first three months of life in the hospital.  He doesn't eat orally and has a feeding tube.  He is amazing and such a happy guy despite all his troubles.  We are grateful everyday he is here with us.  Big Daddy is their Dad he's one of a kind.  He loves me more that I knew was possible and Works so that I can stay home with our babies.  He is my best friend and couldn't imagine my life without him.