Lil's update and many Thoughts!

It has been a little while
since I have last blogged
and I am so very sorry to
all who come by to check
for an update. Lily is
doing ok, she has her ups
and downs, there are
moments her lips turn
purple, she is breathing insanely fast, and then there are moments where she is breathing so shallow I have to put my head up against her chest to make sure she is breathing and her heart is breathing. I am wating for a new stethoscope to come in, the one from the hospital finally broke, which isnt a bad thing, let me tell you...I will put it in her keepsakes box but I can not wait to have a real one. Who would have ever thought I would be excited over getting a new stethoscope? I wouldn't have! As I type this, Lily is sitting in her bouncy chair watching the Deadliest Catch, I have to tell you, she is enamored with this show. We indemand it with the cable box and she can just sit there and watch the same 3 episodes over and over. I think it is the narrators voice that she loves. She has a tie in her 2 favorite shows...Ace of Cakes or the Deadliest Catch....who would have thought? I know she shouldn't be watching TV, but in all reality I didn't start this bad trend, it started at the hospital, and since being home it is company to her. I feel horrible that I cant give her all the attention she wants all the time, but such is life when there are other siblings in the house. I can not let her cry long so she wins attention there but she does pretty good by herslef. she will let you know when she is done, and trust me...there is no way you can ignore her then. Jeesh...where she got that temper from is beyond me....lol...wait...just kidding, she got it from me. She is way cuter then she needs to be, she smiles and it melts your heart, it is like a ray of sunshine that warms you from the inside out, you cant help but smile back when she grins are you.

JUNE 25th~~ She had her Cardi apt this afternoon. We did not know she had an echo before her Cardi apt so we ended up running late afterwards. Unfortunatly we were unable to get the readings from the Echo because it was getting late and they were having computer issues, so hopefully tomorrow or Friday we will get the results on that. I am nervous about it because Lily has just been a little off as stated above. He BP came back fine today and her o2 was 94 which is a little low for her, she has always hung in the 98-100% range, they dont want her going below 92% so as of right now it warrents no action other then watching. We are going up on her beta-blocker hoping it will help with the fast breathing, shallow breathing, blue lips, etc, but we wont know if that is what is causing it until we get the echo back. So much relys on it and I am trying not to get to apprehensive about it. You hear words like Narrowing and your mind goes into over drive. It was not a critical one but heck, it wasnt critical when we left the hospital the first time and then 2 1/2 weeks later we were back and she was going in for an emergency OHS, with the surgeons and doctors in shock over how quickly it all happend. So as the parent of this fraigle yet strong little girl, you can't help but sit on pins and needles anytime anything like this happens.

You try to not cry to much, not to let your emotions of fear overrun your everyday life, but you can't help but think at least once a day, if this is our last day together, have we done all that we have wanted to do with her so far. I sometimes wonder if those thoughts will ever go away, if they will ever die out or calm down. I feared death until recently, until Lily. I no longer fear my passing but I fear hers. You cant help but look at them sometimes and think of them as a ticking time bomb and when those thoughts do flood your mind, you lift your head to the heavens and ask the good Lord Almighty to wipe those evil thoughts away. To keep them as far from your mind as possible. Evey heart parent wonders why the Lord chose us, we want to know why he thought us the strong ones in the crowd.

As I sat and watched everything in the doctors office today I couldn't help but feel sad. As I sat with Lily on my lap, I watched a pregnant couple walk out of the doors from their apt, and the woman was crying. I remember that day oh so cleary,(when we found out the grim details about my princess's heart) the day my world came crashing down around me and there was no one there at that moment that could explain it all to me. Their shoulders hung with heaviness, and their walk was that of loneliness. When I say loneliness I mean it in the way of, they felt alone in that moment in time. The woman and I made eye contact, I did not smile, because a smile was not the right thing for that moment in time. I nodded my head in understanding, and I ever so gently rasied Lily up in my embrace, kissed her on the head and then looked back up, the woman rubbed her belly, we reconected eyes, and in that moment in time, she no longer felt alone. She knew that there are others that can understand her pain, she gave me a little bit of a smile and held her head a little higher.

After the doctors visit we went next door to the hospial to visit, we said our hellos to everyone, everyone so glad to see our Precious Lilybug. She was held and given kisses like always. We were told we missed our Dear friends Bela and Avery by just a couple hours (No doubt the doctor apt made the difference) We sat and talked with Nurse Kristie for most of the visit, she held Lily while she slept and we chatted. When she would get up to do something I would just take in the surroundings. Those of happiness, sadness, anger, and depression. I know the floor like the back of my hands, along with the staff, which we love like family. It was busy today, many discharges and 2 surgeries. I was there as one baby was being brought back, to our old room none the less, and I couldnt help but feel an overwhelmeing sense of sadness and anger. There was no more familes on the floor that I knew, all were new. To think how many babies come to that floor with CHD's just breaks my heart. To know how many parents will go through heartache and triumpants on this floor frusterates me. How many are most likely caught of guard is sickning. Even though that heart baby isn't your child, they effect you none the less, because you know it could be your child tomorrow.

I remember when Lily was there for her second surgery, the floor was defeated. A baby was lost, there was nothing more the doctors could do, his little heart had had enough and admitted defeat. He gave up his couragous fight and such a little fighter he was, then flew home to the arms of Jesus. It was awful, how could you not look at your child and feel blessed but think to yourself that could always be the fate of your child. No smiles were on the floor that day, just tears and sadness. We all felt the lose, ofcourse not as much as his mother and father and family, but we still all were moved deep to the core.

I have often said I would like to know the Lords plan for Lily, many have heard me say, I wish he would come and tell all to me so I would not tremble in fear as I do. That is she has a day reserved to be called home that I would like to know it because that would give me a dead line...lack of a better term...but I would know how long I have with my precious child. But then others ask, how you would handle that, knowing things like that....I dont think I would handle it well, but then again I have always been one that doesnt like surprises, I like to know ahead of time what I am getting myself into. But I am once again reminded how this is not in my hands, this is in our creators hands and will forever will be. I just have to have faith, trust and courage. One day at a time, not looking to tomorrow until today is over. Deep breaths, tons of kisses, and lots of love.

Since we've been home.....

So i know I have said I would post an updating blog and I am so sorry that it has taken me this long to get around to it. I have been very busy but that never ends I found out so I decided that now was the time to take care of this. About little miss Lilybug, she is doing wonderfuly better. They started her on her beta-blocker while she was in the hospital and went up on it and then went down on her amiodarone which is for her other arrythmia. She was having tons of PVC's while we were there but they reasured me that they weren't all real, which I knew that but I knew when they were because of how she was acting. She would start to breath fast and her heart rate would go crazy, she would turn pale and her o2 would drop and then as quick as it would start, it would be over. Durring those times she would open her eyes and look at me with those big pleading blue eyes like "Mama, help me, this doesnt feel good, make it stop." Then she would cry, they said they would scare her, really? I didnt know....cause they scared the crap out of me. Once they got her meds situated she started to come around to her old self to an extent.

The thing with being on the Beta-blocker is it makes her sleepy, like that isnt a problem. HAHA...yeah...she slept enough before this medicien and here we are adding more sleeping to her day. They said as she gets use to her meds she will come out of it....i just want to be able to see her baby blues more, i want to see that angelic smile more. She has began to laugh and what I wouldnt give to hear more of it, instead i get to listen to the quick pase of her breathing as she studies the back of her eyelids inspecting them for cracks.

Her narrowing is not causing any of this, so that is the relife of all of this but at the same time we are all on our toes just waiting and watching. When will things ever be just another ordinary day in the McLaughlin house? Most likely never again, you dont have ordinary days once you are blessed with a heart baby. your stress level hits the roof and you have constant worry.....I would love to have one stess free day but for the expense i would have to give for it, i will pass on it. I will just thank the Lord God Almighty for everything once again and remind myself I truly am blessed. Things could always get worse so I think of our life as good right now.

Now on another note....not so great news!

Major panic attack has set in, tears are my cheeks best friend at the moment. I talked with are in home healthcare and they have told me that my insurance doesn't cover Lilys formula which is the very oh so pricey Nutramagin, they told me for them to deliever me 8 cans of it a month it will cost us $288. We dont have that type of money, we are lucky if we have that for groceries each month. We cant get food stamps because we are on WIC, you get one or the other, not both. We are drowing in hospital bills, medical bills in general. Where do we start? There will be no way we can pay these off. We are trying to apply to SSI and a few other places but it takes a while to get accepted to those. I am afraid of the future. How do you get a job when your spouse cant tie down regular hours at his. I need a job but I dont see how it is possible, and Chris cant work 2 or he wont get an ounce of sleep. I cry because I dont want my boys raised like I was, I want them to have so much more, I know they will have our love and that should be well enough for them, but you all know how kids are these day. How do you explain to them it was either their happiness or their sisters life? How do you get them to understand that? They wont for a long time and by that time I fear it will be to late....Oh God...what are we to do? Crying solves nothing....anger solves nothing, determination does....Strength is my weakness right now....Im so tired...so exhausted...I dont even know where to begin anymore....where do you begin? How do you get through this? WHY....WHY .....WHY!!!!!!!!!!???????!!!!!!!!!!!!!!

A Trip to the ER turned into an Admission!

oh where do I begin. So as I sat and watched Lily last night once again stuggling to breath I listened to her heart and it was 180bpm so I called the cardi and he told me to take her in immediatly. I packed her up and myself ready for the long haul seeing it was midnight by the time we headed out the door. We got there and they hooked her up to the pluse ox as we were being checked into triage and she was hanging in the 80's . We had to wait out in the ER for all of 10 maybe 15 mins and then we were taken back, I swear the main ER has no idea what to do with a Cardiac baby, it is kind of funny to watch them squirm (I know I know, thats not very nice of me, im like a kid with a magnify glass watching Ants run away from me...Muuuu HA HA...Evil laugh* LOL) Ok enough with the laughs. So as she was hooked up her O2 rate would bounce between the 80's and 90's and her heart rate was anywhere from 140's to 170's. Her color was a bit pale but she besides that she was fine. Then there was the times she would wiggle and squirm and start breathing fast and her heart rate would jump from the 140's to the 170's down to the 130's, she was all over the map. The ER called her Cardi and they decided to go ahead and admitt her for observation. We were taken upstairs around 4am and were welcomed with open arms and the "Why are you here?" and the"Oh my goodness, look at how big she is" Once again she is being adored and cooed over. They are starting her Beta blocker and doing EKG's left and right to moniter her heart. They are hoping she has an episode while she is there to see what I am talking about. I hate when she has them but I hope she does too so they can see first hand what I am talking about. She breaks out in sweat, she breaths like her heart is coming out of her chest and she just cant get comfortable. I pray this ends up just being her Arrythmia and not anything any more serious then that, but that is still serious, because arrythmias can kill. Once again I ask you all to lift up your voices to the high heaven and ask our Lord God, our creator, for mercy, for comfort, and for complete healing. My never ending thanks and love are sent out to all of you.!

"Dear Lord, I ask for your grace, I ask for your comfort, I ask for your healing, for Lily and for myself. Lord I have left myself out of prayers lately but now I ask for your help. I am falling apart, my heart is breaking, I am losing my strength for all of this. I will never give up but I need a little help. Please take these burdens and hold them on your shoulders for me, even if it only for a moment. Please lift me up and wrap me in your comforting embrace. Please hold Lily close and help her heart fight this fight, we ask that you hold her heart in your hands and heal it in a way only you can. I thank you Lord for all the time I have had with her, I am greatful that she is an angel I can call mine. I remember Lord to Trust you, I trust you with all my heart, and I will not lean on my own understandings, I have acknowleged you, now please, help direct my path and make it straight. I ask this of you, in Jesus name, AMEM!

A Long Day!

Such a very long day for us today. As mentioned below in the previous blog, I had to take Lily to the ER. She was breathing rapidly and turning pale, was lethargic etc. But of course once we got there she was right as rain, as bright as sunshine, and as cute as a button. She made all the nurses ohhh and awwww over her.

So what was done today? X-ray, 12 lead(EKG), blood cultures. The X-ray came back hazy but nothing to worry over from what the Cardi said. The 12 lead looked great....and the blood cultures had a few abnormals such as a high white blood cell count, which didnt suprise any of us seeing she has the infection in her wrist.

When we got there she was screaming and trying to catch her breath but her color was great. They took us back immediatly and got her hooked up to the Pluse Ox and her 02 saturations were hanging in the 70's for a bit then started to climb back into the low 90's which are normal for her. Her heart rate was fine except for when her o2 sats dropped then it went up and that is when her heart goes into the arrythmia because of her Mitral valve, which we hope will correct its self once we start the beta blocker...Other then that she looked great. They didnt want to do another echo seeing she just had one in the office earlier this week. Once again, I hear the same thing, just watch her and wait!....so watch we will...and wait we have to....wait for what you ask...wait for anything bad to happen to show us signs of having to go back into surgery!

These pictures included are from the ER trip today! Such a cute little girl my princess is!

We are headed to the ER....

Lilyana slept from 930 last night to 1030 this morning. She has been breathing rapidly, truning a pale color and she was throwing up last night....Please keep her in your prayres, I will try to update later!

Lily's new heart troubles

Alright, so this is not the update I thought I would be putting out right now. Lily is doing ok for now, but we have to watch her heart closer then we were. No red flags as of right now, just yellow for caution. As I have mentioned before Lily has been breathing rapidly and turning dusky from time to time and now we know the reason behind it. Do forgive me if this seems a little hard to follow trying to process all the medical information and turn it into information that everyone can understand.

Lily's last surgery to fix her LVOTO and AS went well, her LVOTO is doing well for the time being but it is her AS that we are watching closely. For those who dont know what AS means it means Aortic Stenosis. This is where there is a narrowing in the arota at the bottom of it. Anywho, the last procedure to repair her AS went fine but when repairing it they had to cut part of her aortic valve at the bottom and then reatach it...hope you all are following me here... (I will include a picture of the docs drawing...humorus to see to say the least). When you reatach a valve you are atomatically cause scar tissue, or what they like to call greating(not sure if that is how you spell that) ...and scar tissue causes narrowing...which is bad...so...she has narrowing in a different spot now...I am hoping we can heart cath it but if I am thinking correctly that wont be an option. Its extra tissue not the walls them self narrowing...once again I hope that makes sense.

Ok the next problem here. I have been noticing Lily breathing rapidly and the blusish color from time to time. Well that would be a Mitral Valve that would be causing that probelm. In the left ventricle, the inlet valve is the mitral valve, which opens from the left atrium, and the outlet valve is the aortic valve, which opens into the aorta. Each valve consists of flaps (cusps or leaflets) that open and close like one-way swinging doors. Her valve is opening and closing to quickly which is not allowing the blood to build up in the Upper Left Chamber before it drops into the left atrium...hope your still following me here...the Upper left chamber is where the blood is disperesed for the lungs, so if it doesn't fill properly the blood cant go where it needs to go before it drops into the next chamber. So...how do you fix this you may ask? well that is where a Beta Blocker comes in....whats that you ask again...well from what I have read and what I have been told it helps with the arrhythmias, heart failure and a few other things....but shes on an arrhythmia a medicen already....boggling my mind over here...I guess her Amiodarone isnt doing what it needs to do...but then again it must be because she hasnt had a SVT (Supraventricular Tachycardia )supraventricular (atrial) tachycardia is a regular, fast (160 to 220 beats per minute) heart rate that begins and ends suddenly and originates in heart tissue other than that in the ventricles. Here is a link to explain it better then I can http://www.sjm.com/conditions/condition.aspx?name=Supraventricular+Tachycardia+(SVT).

Back to the beta blocker...this will help to slow her rythem down and help her blood thin a bit to allow for it to flow quicker into the chamber to give it the chance to fill before the valve opens into the next chamber....

Ok...my head is hurting now...lol...wouldn't yours after all that information? As of right now, Lily is fine, just on a watchful eye. The Cardiologist listened to me this time...YAY...hopefully they will continue to...last time they didnt and then Lily got critical....I wont let that happen again. Thank you for all your prayers! I will update after her next apt on the 25th or sooner if need be!

Her new infection

The Infected Wrist

What I'm getting out of it!

Oh boy....thats all I can think right now. I want to yell...I want to scream...but we all know that won't do me any good at the moment. Lily once again has another infection, this time, it's in her wrist...funny place to have it right? Well here's the story...the oh so wonderful story.

While Lily was in the hospital this last time they tried to start an Art line (IV) in her wrist. Well it didnt take so they had to suture the site closed and then they tried again in her groin and got it there. So now back to the wrist, all was while at the hospital, the sutures stayed in place and no problem with it. Well now since we have been home, I have noticed a little suture hanging out of it., I haven't touched it unless while washing it, I figured it would fall out on its own and seeing hasn't given us any problems since now I haven't mentioned it to the doctors. Well about 3 days ago I noticed it started to get a red color, it wasn't puffy or anything, just red. So I watched it, then yesterday I noticed it was little puffy. She cried almost all day, and if she wasn't crying she was asleep...in my arms, no where else. She squirmed all night last night, would wimper in her sleep, so when I go up this morning I called the Ped Cardi to let them know what was going on, they told me to call her regular Pedi. I did, and they told me to bring her in once again ASAP. We got there and her Pedi was so upset that she was back once again...not that she doesn't like seeing Lily, she just doesn't want us there unless we have to be. We have to wait in the back so as we were sitting there she comes up and takes a look at her and goes."SHIT" I almost fell off my chair...I wanted to clean out my ears to make sure I heard her right. She ran and grabed the doctor we were seeing and said, get her in pronto and culture that. Well no more then 5 mins later were we in a room, being weighed and measured, then the doctor comes in. He listend to her because of her fast breathing and blue lips. Got the o2 monitor and she was in the 90's like always and then listened to her heart, no different then 2 weeks ago. So we are good there, but then he looks down at her writst and looks at me and said, "Hold her tight while I squeez this" Squeeze he did, scream she did, cry I did, and puss it did.

Ugh It was awful, green puss everywhere and then blood, He swabbed it for a culture and stuck his head out the door and hand it sent to the lab stat and said it will be back friday. For now we are on Keflex twice a day. He said once the labs come back they will change her med accordingly.

I am so frusterated. Its like please...tell me how does this happen? I wash my hands anytime I pick her up, so does anyone else. The boys know not to touch her without seeing mommy or daddy first for hand sanitizer so I don't get how she got this. The only way we speculate it happening is it all started with that cheek infection. and it spread, but if that is the case then wouldnt that be a blood infecton? And if that is the case we would be in serious trouble, it would explain the crankieness....I am so stressed right now. If it is a blood infection then that would mean a trip to the hospital and that I can't do again. Praying is my only option. I ask that you all would continue to pray with me.

(Lily sleeping...not in mommies arms for once today!)

WOAH.....Way to many emotions!

As I sit here and reflect on the last two days my emotions have been all over the place. I have gone from severe anger to crying like a baby. Lily is ok...a little shaky and has me on edge but ok. She has turned a dusky color a few times since being home but her lips have turned blue quite a few times since being home and as I watch her breath she seems to be breathing a little faster then normal. I actually had a friend of mine listen to her, her lungs are clear and her heart sounds as fine as it usually does, it is hanging in the 150-160 bpm, but I dont know...something doesnt feel right when I look at her. She has been so cranky lately, her wrist where they tried to get her art line put in and failed was sewn back closed and a suture is still in there and now it is red and puffy, no puss but a little warm. The last place I want to take her is the ER with all the germs unless I absoulutly have to. UGH.......no rest for the weary!

So I had an extreeme case of dejavu the other day. A friend of ours little girl is back in the hospital after a very scary case of heart failure. Baby Bela is her name, her and Lily were born on the same day, just hours apart from eachother! She was born with HLHS and had the Hybrid done and did great. But the other day she took a turn for the worse....her o2 sats were beyond low and she was grey and blue...never something you want to see your child look like. They rushed her to St.Joes and her sats came back up but then dropped again, they admitted her and then the next thing you know she was intahbated and then coded twice.

It all rushes back to me, the sounds of the moniters, the dinging of her vent, nurses and doctors running around, yelling orders to eachother...as you stand there helpless...your arms ache because hours ago you had your precious child in your arms, with those little eyes looking at you and now you look at your child and they are listless and pale. Such shock overcomes you, you begin to ask yourself how did this happen? Just the other day she was doing fine, was there something I could have done to prevent this? You just want to take all this away from them, place it upon your own heart...so their can be healed. Being the mother or a CHD baby demands so much from you and I am not talking physically, but mentaly and emotionaly. You dont know what tomorrow will bring, if you baby will be in your arms or in the arms of the lord instead. You have so much put on your plate for taking care of them, and you would change nothing about it. You will walk hours at night to calm them and not let them cry because you know it is not good for their heart to cry, even if that means you get no more then a hour of sleep before you older children wake up. You will forgo ever luxery in life just to keep this precious child here with you. You can never explain to another parent what it is like to lead the life that a CHD parent leads. The worries that come with it, the heartache that comes with it......the unknowing that comes with it. You give it to God and try to remind yourself daily that it is in his hands and always has been .

Matthew 6:34.
"So do not worry about tomorrow ; for tomorrow will care for itself. Each day has enough trouble of its own.

Just another day in the McLaughlin Household!

!Meet our Household!

(Lucas)

(Austin)

Mama and Lily with the funny face...mama chopped her hair

! Belly time for the first time since her second OHS!

(Mommys New Hair)

as i sit here and type this i have a sleeping baby on my chest and two children sitting in front of the TV watching Dora, quite for the first time today....I think I am losing hair from stress, everytime I brush my hair I have to clean it out afterwards from mass amounts of hair that wasn't there before hand....normal children are stressful enough...but add an autistic child, an asmahtic child and a heart child all together...what do you get? No sleep, tons of worries, stress and no quite! I can't remember the last time my head didn't hurt at all. I can't remember the last time I have eatten, breakfast, lunch AND dinner...most days it is a snack and dinner with lots to drink inbetween to keep myself from passing out. When you have next to no help it gets hard.

We have friends coming in town in about 2 weeks, my house is a mess....and you all are probably thinking...2 weeks..she should be able to get the house together in 2 weeks....yes...I should be able to...but that is before we add mishaps in between...such as a 2 year old drawing on the wall, carpet, his brother and himself....or that is before a 4 year old sticks his hand in the back of the toliet and then the next thing you hear is Uhh Ohh....that is before you realize that you have to have at least 3+ hours of sleep in order to function but even then you can barely keep your eyes open long enough to tell it is day or night outside. It takes all your energy just to tear a 2 and 4 year old off of eachother n the heat of another fight over who had the red lego first (while you try to explain that here is another red lego on the floor...the same one...but its not the one that the other has so lets not go there) You scream in frustration while the kids laugh at you. A shower is a luxery, just like eatting.

My husband wants to know why I can get nothing done around the house...he assumes I sit here all day...well right now I am...but I dont. Try doing laundry one handed with a baby in the other arm....or try loading the dishwasher while everyother object you load gets pulled out. Try to vacum when the next thing you see is popcorn all over the floor or cereal for that matter....you wonder why you even bother to exeret the energy to do these thing when the house just ends up a mess again......you thinki...I could have made myself something to eat instead of wasting my energy on cleaning seeing it didnt matter anyways because you have no proof of it 5 mins later....some days tears are your cheeks best friends and when others ask you whats wrong, you smile like a crazy lunatic and say...Nothing at all...with a crazy twisted...I am on the verge of losing it.....smile. And if you dont understand that smile...well I guess your kids have never driven you as insane as mine have. My husband tells me to spank them....Well I tell him spanking doesn't solve everything....I spank when I know I have to in cases of touching the stove while it is on...or grabbing a knife from the kitchen drawer.....or when the other trys to do bodily damage to the other....AHHHHHHHHHHHHHHHHHHHHHHH.....I hate having to say the same thing over and over like I never said it before...and when you say it for the 15th time with a little edge behind your voice, they look at you and go...Mommy why are you so mad....BLAH...I know I know...such is the life of a mother....and I know many would give anything to have the trials placed before them that I have....I try to say thank you to the Lord for my blessings, and count them and remember not all are so blessed...but it is hard when you turn around and a carton of eggs are all over the floor and a 2 year old is standing over them going UH OH...I clean up....I clean up...and grabs your clean kitchen towle and makes even more of a mess, slips in it, has it all over his diaper...and then runs before you can catch him on the carpet....needless to say, you have the kitchen, the carpet and the kid to clean.....you think to yourself...does this ever end? Some days I think it never will end...I look up at the heavens(or should I say celieing) and ask God if he is going to show me a sign of mercy today...when I hear nothing in return I swallow the reality pill and put on a couragous smile and continue forward watching the clock counting down the hours until bed time prayers. I just want to hear myself think from time to time.....Speaking of hear myself.....I no longer do...the boys are now fighting over who is going to turn the tv off because Dora is over....oh wonderful...they just started the who can smack eachother harder game...so this is where my blog ends....Lord be with us in the McLaughlin household!