Monday, March 30, 2009

Here goes nothing!

The site is up and running. It is still a work in progress but I figured I would let everyone see what i have been up to for the last 5 days. Sorry I haven't posted, I have been very busy with all of this, along with the mix of my many children in my house about overwhelming and tiring.

We are hoping to get our first set of baskets put together and ready to go by April 29Th. We have chose that special day because of Angel Aryn. He left this earth to play with the sweet angels that day. We would love nothing more then to honor his memory that day by dropping off Aryn baskets and Lily baskets that day.

You can help make that possible by stopping by our web page to learn how. Click on the donations tab and you can either make a donation by clicking the donation link which is secured through Paypal or you can choose something to donate by reading the list and mailing it to the address provided.

We are very excited about all that is happening. We have a wonderful PR Rep along with a strong team of quilters behind us. The Lords hand is truly in this working, may we carry it out and do his will.

I will update a little later about the rest of the household. For now, it is 3:30am, and I am going to call it a night.

Love and Blessings

Wednesday, March 25, 2009

Glory Be to Him

As I wrote last night about the baskets I want to make for St.Joes Cardiac Unit, I never thought I would have gotten such a turn around in responses in one day. I not only posted on here, I also posted on Lilys and My Myspace Account along with my CafeMom accounts (yes I have multiple of both)
I am blessed to say, these baskets are going to be taking off the ground. I am working to build up a team, and I am happy to announce that Bridgette is jumping aboard (Read about her precious Angel Aryn, we are coming up on his 1 year angelversary). I also have my great friend Sami-jo jumping on with us helping out with emails seeing they keep pouring in.

I feel the Lord hand over this I truly do. I felt this was his doing, he placed this thought into my head, his voice that echoed Baskets, when I asked,"Lord what can I do to reach out to others that are walking this same path?"

So I jumped with it and ran. Now here I am in the middle of putting together a new website completely geared for these beautiful baskets. Right now they are Lily and Aryn baskets. Aryns are in honor of his memory, of the valiant fight he put up until there was no fight left. He left this life as peaceful as he could back into the arms of our Father in heaven. His time here was short but impacting none the less. Bridgette, it will be an honor to work next to you and serve in honoring his memory.
Lily's baskets are of course in honor or her. I want the parent to know that there is hope, that even though it is a long road up hill, look, Lily has fought, and look, she is with us still. Lily has fought no harder the Aryn, it is just Aryns heart became sicker then Lily's ever has been and the fight was not one he was able to fight. When God calls us home, we can not fight the call.

Aryns baskets will be for the boys and Lily's will be for the girls. In their basket will be a note card with their stories. Now what I have officially decided on putting into each of these baskets is as followed

With the help of our many supporters, their generosity and kindness we will be having 3 blanket makers.

There will be a Beanie baby, mitts, socks, a bib that will be embroidered "I am a special heart baby, that has been treated at St.Joes PTCICU" The boys will get a white one with blue trim, and the girls will get one with a pink trim.

Bridgette will be putting heart bears in each of the baskets, which I can't wait to see.

And then for the parents I have decided a journal, because for those of you who are heart parents know, how writing is one of the best methods of understanding all that is going on around you.

I am looking into baskets right now and places to make tags....I can not wait to get this all started. I have had a few volunteers on helping with assembling baskets also.

Sami-jo is in the process of finding out how to turn this into a Non-profit organization.

So, as you can see, TONS is going on. All because of one word whispered to me.
All the baskets will have a tag with a scripture on them. For the Glory of God, the one who continues to humble me each day. Our father reminds me that all of this is HIS will, each breath I take is because of him. My Husband, children and life as I know it, is because of him and his sacrifice. How can I not lift this all up to him and glorify the one that made all of us possible. For the Glory of it all, I live to serve my life, to be worthy of meeting him. I will kneel tonight, and lay my face to the ground and thank my father for all of this. I am a child of God, and I live to make him proud!

I lift your name on high Lord.

Many Love and Blessings,

Tuesday, March 24, 2009

Calling My Arizona Heart Moms

Ladies...I have sat here at home this last week, since I fractured my ankle...many of you who know me, seeing me in some sort of wrap isn't very uncommon. I am a walking accident. Lately I have been referred to as Bella from the Twilight Saga.

Ok back to my thought process. I am directing this towards, Avery, Heidi A., Bridgette,Heidi S., and any of the other heart moms that have taken their babies to St.Joes PTCICU. The more people we have helping the better. We all have become friends because of our children and their special bonds. Our lives are forever changed, some more the others. With that being said, I would LOVE to start making baskets for the babies that are on the floor. Ones that the nurses can give the parents as gifts when they get there. I have a friend that is up to making blankets for the baskets. But I was hoping to get more ideas as to what could go into them. I was thinking a beenie baby, seeing we all have quite a few of them due to their legs or arms being propped up with them. Bibs, because even though we are use to seeing all the lines and for some of us, their chest's being open, not everyone else is ready to see that when they visit. Mitts was another idea I was thinking along with socks. I can only think of things for the little ones, but I wanted to put something special in there for the parents also. I will be contacting my church to see if I can get some help kick starting this idea. We can do themed baskets, meaning, if I wanted to do a Lily basket, would do them as leap frogs and Lilies seeing, she is a leaper baby and her name is Lily. I want to dedicated these basket for our warriors and our angels. I would love all the help I could get. One day, I would love to do more then just St.Joes, I would love to visit PCH also, because there are heart babies over there, and we do know families who have been affected over there also.

If you would like to help please feel free to contact me at or you can always call me at 602-682-5134.

I feel that the Lord is wanting me to do this. It came to me suddenly the other night. I was sitting on the couch working on CHD information, wanting to help in some way, shape, or forum. If this is meant to be then it will happen. I just want to include you ladies also, because I know how speical this could be for all of us.

I Look forward to hearing from you ladies....

Much Love and Blessings

No Changes in Lily or Stellan

Lets start with little Stellan. If you would like to read more about what is going on, read about him here. His heart rate is bouncing right now. From what I have read, his heart will kick into normal sinus rhythm, then it bounces right back to SVT. His heart has settled in the rate of the 220's, which is lower then 300 but it still needs to drop. Lily use to have bouts of SVT's her highest rate was 280's. It was scary! You could see her toss and turn, she was so uncomfortable for good reason. I have had a bout of SVT's and it was the scariest thing I have ever had to endure myself, medically. It felt like my heart was going to beat through my chest, I couldn't catch my breath, it made me dizzy, my chest hurt, I swayed on the spot and then collapsed. SVT's are serious, and they can kill. Your heart can not sustain itself beating like that for long, it will just stop from being over worked. McKMama(Jennifer) knows these risks, and know this is in Gods hands. It is his will, he healed his heart the first time, when the doctors told them he was going to die when he was born. We all raised our voices, and he was born with a perfect heart. The doctors couldn't explain it, it was nothing but a miracle. If that is Gods will again, then he will heal Stellan's heart, but if he has other plans, then nothing we can do will stand in his way. Jennifer is praying for HIS let us pray with her. Then let us pray for her and her family. For whatever dicisson our Father in Heaven makes, he will carry them through with his strength, guidance, and wisdom. It is in HIS hands, it has never been in ours. He humbles us and reminds us of that daily.
*If you Twitter...(I haven't gotten that savy yet) can follow McKMama on Twitter. Just go to her page and on the left side of her page about 1/4 of the way down, you will see her Twitter bar. You can Follow her there.*

Now, about my Warrior, she is still hanging in there. Her cough has gotten no better. I can not find my stehescope to save my life. Lily loves to chew on it....seeing she is teething, I have never had the heart to tell her no when it comes to little things like that. When you take it away she looks at you like you just took her world away. How can I deny her something so little when she has gone through so much...I know I know...many of you are thinking...oh boy she is going to be spoiled...but in my mind, she deserves to be spoiled to a certian extent. Moving back to the topic at hand, I have no stehescope, so I can not listen to her chest, which would bring me a bit more comfort knowing it isn't in her might have to go out and get another one. We will see, hopefully she makes a turn for the better and save me from making that trip.

All in all, Lily is about the same, the cough is about the same, but it comes and goes in waves. Right now she is sleeping soundly and so is the rest of the house, so I am going to lay down again. Last night was a long night of coughing so I didn't sleep soundly. My head is pounding and the computer isn't helping.

I will keep updates coming for Stellan and Lily. Please continue to pray for them both, along with all the other Children AND Adults who are fighting CHD's.

We have a new friend on our friend list that is an adult fighting for his life. He is awaiting a heart transplant. He is the creator of some of the wonderful music on my play list also. Paul Cardall, has been waiting for 216 days for a new heart. A very inperational story.

Thank you so very much for all your prayers.
Love and Blessings

Monday, March 23, 2009


This precious little guy(affectionately known as Mck Muffin) is in critical condition. His moma's blog, has been one we have followed for months. He was diagnosed with a heart condition in the womb called SVT and was not expected to live. SVT is a condition that sends the heart-rate skyrocketing. Since his birth, (until today) he's had no episodes and no signs of any heart troubles.
Now he is in the PICU fighting for his life. His little heart is beating at 300bpm...Our heart rates are usually about 70bpm for an adult male and 75bpm for an adult woman, now for newborns it usually runs 120bpm, and older children stating all those can realize his heart rate is WAY TO HIGH.. They have tried to bring it down with so many different methods with no avail. They even stopped his heart to try to kick it back into a regular rhythm...nothing. He needs our prayers, we need to storm the heavens with them. Let our voice echo, let us all join together and pray for Gods will to be done. To read more about Stellan aka MckMuffin, click on the picture, it will take you to his page. There you can read all about what is going on from his mama's pov.
Love and Blessings,

Lily and Lucas's Night

It is 3:40am...and I sit here praying silently as everyone is asleep but Lily and myself. The sounds of her cough kept me from a deep sleep. Listening for any sign of trouble, and that was what I heard just 15 minutes ago. My baby girl has her crib elevated, along with the humidifier going and nothing is seeming to help. She started to have more and more coughing fits to the point I was sitting on the floor next to her crib with my arms between the bars patting her back as she gasped. It finally got so bad I woke Chris up and pulled her out of bed because she was gagging. As soon as she was in my arms she was gasping and gagging...the next thing I know she was throwing up in my hands, and it was pure mucus, then the second gag was more mucus and milk, and I saw a speck of blood. She cried but looked a million times better and sounded just that, a million times better. She cried, and I sang her, her sweet song, praying silently while I did. Just asking for calmness and rest to over come her body, so we didn't have to make another ER trip at 4 0'clock in the morning. But as I sit here and type I can still here her coughing, not nearly as bad before, but coughing hard none the less. She looks miserable, which is how I know she feels. But I have to remind myself it is just a respiratory virus that she has to fight off, but how much can she take before she is to weak. I know in the hospital anytime she would go into a coughing fit she would drop her Sat's into the 80's and then come back up. I am sickened that I can do nothing but just sit here, just sit and pray. Pray that she will over come this cold and it won't do any damage to her heart. I know it may seem silly to many, but colds scare the Ba-gee-bees out of me. The colds seem to have hit the McLaughlin Household something awful too.

Lucas was up all last night screaming and crying. I think he was having night terrors. That is the only thing I can think of. It was awful! Every five minutes he would wake up screaming, "Mommy, Mommy, I'm lost, where are you mommy".......or "Mommy, Mommy, don't leave me mommy".....he also would call for Grandma and Grandpa, and daddy also. Saying he wanted to see them, to make sure they were alright. Then he also awoke one time saying there was a monster in his closet, which made no sense to us. Seeing I do not let him watch scary movies or cartoons that have scary things in it because I was always sensitive to those types of things as a child and I know we have an over active imagination at that age. But scream he did, about a lot of things that made no sense. It broke my heart because no matter how many times we comforted him and told him it was ok, that mommy and daddy were right here, he still woke up screaming. I even got him out of bed and brought him to the living room and had him lay on my lap, knowing that if you sometimes get up out of bed and move around it stops the bad dreams. No, not with my son it doesn't. I felt a very uncomfortable spirit in my house last night, it was full of unease and tension.
Lucas confirmed last night that I needed to spend some time on my knees last night before I went to bed, when he woke up screaming once more. What he said still scares shocked me when he said it too. He was tossing and turning, screaming, "Mommy, Mommy, Mommy, please don't leave me mommy, please don't leave me." I ran into the room and shook him awake, or at least I thought he was,"Lucas baby it's ok mommy is here honey, I am right here." He looked at me and cried, "Mommy please don't leave me in the bright white room....please don't leave me with all those people mommy, I don't want you to leave me alone....mommy don't leave me there." He wrapped his arms around me and he was crying still. I rubbed his back, "What white room Lucas? What people honey? Where were you Lucas?" He just cried, never answered me, I rubbed his back until he fell back to sleep. I hummed to him and tucked him back in, and prayed.

I left his room with a sense of unease, I wrapped my arms around me, and thought about what he said. We have told him about death, that when you die, that your body will remain here on earth in the ground but your spirit returns to heaven. That even though you close your eyes here, when you open them again, you will be in heaven, you will be with God in his house. We told him that he would see Great Grandpa Bruce in heaven along with lots of other people. We didn't tell him this recently either, this has been talked about since Lily was born. We wanted to make sure the boys knew, just in case anything ever happened to Lily. Like it almost did before and after her second surgery.

Many of you might think he may be to young, but you are never to young to learn about heaven. We told him it doesn't hurt in heaven, you will have fun there just like you do here, except we wouldn't be there right now. He asked us if Lily would have friends to play with in heaven if she died, in which I proceeded to tell him of course she would. He asked me what heaven looked like, and we told him it was never dark in heaven. It was always light, like a beautiful day, you never get cold and you never get hot.

Lucas is a special little boy with his special little mind. He is different then many 5 year olds, he may look older then he is, but his innocent runs deep. Autism throws many curve balls, but having a beautiful mind is part of all of it. He thinks differently then other children. He has such a mild forum that many do not see it or don't understand it. He is a handful within him self. Always out on a mission of self destruct. Not really ever paying close enough attention to what he is doing. I have always been fearful for him, he runs ahead of me, while I yell for him to slow down and fall back. Grabbing his arm before he reaches the parking lot in the apartment awe of the cars, but never truly grasping the true danger of the cars. Between him and Lily I am constantly on my toes, with a 3 year old in between the both of them.....may my Lord and saviour grant me some wisdom and strength to raise them right.

Anyways, back to Lucas's restless night. After I left the room and sat back down on the couch to return to working on none other the Lily's blog spot, he started screaming again, "DADDY......DADDY.....I need you Daddy.....DADDY" I ran into the room to get Chris, he jumped startled, but I told him that Lucas was afraid for him, so he went in and crawled in bed with his boy, his mini me. Poor Chris slept in bed with our little boy all night. I finally went to bed after some prayers, that seemed to do no good, because as I slept in my bed I could still hear him call out in the night. Yet when this morning came, or should I say yesterday morning came, he was unaware of it all. We asked him if he slept good and he told us he did, and we asked him if he had bad dreams, and he just looked at us and said, "I didn't dream last night."

Oh but son you did and how I wished I could have climbed into his head to see what he was seeing. To see what he saw during that one dream. I will forever wonder if he saw heaven in his dreams, knowing full well I will never know.

With that, I will end, because it is now 4:40, I can't believe this blog took me an hour...but then again, I stopped because both of the boys woke up to go potty and then asked for a drink, I have been up and down checking on Lily because Praise the Lord, she HAS NOT been coughing...

So it is time for me to crawl back into bed, and thank my father in heaven again, for grabbing my hand and calming me before I made any rash calls, such as taking Lily to the ER, so I sat here, and wrote to everyone, and tried to calm my mind while I did.

I hope my ramblings made for a good read...I am so exhausted I am not sure how I am still typing. It has been a long night, which will prove for a long day. Wish me luck. Thank you for your continuous prayers.

MY Love and Blessings

Sunday, March 22, 2009

Home again

Lily is tuckered out from coughing her lungs out, but her chest x-ray looks clear. She has no temp either so they just watched her. Her O2 saturation's were anywhere from 96-80. They told us to follow up with the Cardiologist tomorrow....what good that will do us I do not know. It is just a cold that has to run its course but she is so tired and weak from it, it is driving me crazy.

When we were leaving I decided to make a quick run up to the 7th floor, knowing it was just a run in and a run out. I wanted to see how Addi was doing, and she is looking great...YAY Addi, Stacey said hopeful they will exatubate her today. That is good, before I could turn around to and head out, we got the, "Why are you here?" question. I told them Lily has a cold, she was turned around facing away from the door. Before I could even say nice seeing you glad to hear she is doing well, I got the "You shouldn't be up on the unit"....I wanted to say, why do you think I am standing away from the door and looking like I have ants in my pants....but they made me feel like I had been scolded and I was a child again. I told them, I was headed out, just checking to make sure Addi was doing well, seeing I no longer remember the number for the until I can not call in and check. Anywho....I just had to share that story....not sure why it is bugging me so much. We didnt touch anything or anyone, and it was literal, hi, bye, thing....but still...none the less....I feel like I need to go sit in time out and think about what I have done....I think I will take a nap instead...seeing Lily is napping and so are the boys...what better to do on a nice cool afternoon.

Thank you all for your prayers.
Love and Blessings

Against my better Judgement

We stayed home last night, when Lily finally woke up she was right as rain. She looked great, sounded a little raspy but good. Then when I went into check on her last night, she had some tugging going on, it was coming and going. I woke her up and was going to take her in but she once again looked fine. Well this morning, she has been coughing non-stop...trying to catch her breath but can't and now she is all sweaty and clammy, are headed in....something I shouldn't have let myself talk myself out of last night.....She still seems peppy when she is in my arms, but all she wants in me.....and she is coughing in my ear right now as Chris packs me a diaper bag...ugh.....why I didn't just listen to my inner mommy voice last night is beyond me....I am irritated at myself right now. I just pray there is nothing wrong other then a cough and we get sent home. BLAH....ok...time to go, daddy is done.

Love and Blessings

Saturday, March 21, 2009

E.R trip in process

As soon as Chris gets home I am taking Little Miss into the ER at St.Joes...we all have a nasty cold and she has slept more today then she has been awake, she has a nasty cough with a fever on and off. She is up now and sitting in the kitchen watching her brother play, and her color has returned to its nice pinkness, but when she is sleeping she turns pale. She slept 6 1/2 hours for her nap, not straight through, but just about. I will post once we get home....yes...I say when we get home, because I am praying it is nothing more then just a little cold and we won't have to stay there. UGH...Praying...
Love and Blessings

Wednesday, March 18, 2009


Pressures are up by another 5%....thank the Lord in heaven it is only another 5%. So we are sitting at about 65%, which is where we were at in September/October of last year. Dr.Rhee knows where it is heading, so he looked at me and said they would be taking her case into the next conference to see when Dr.Cleavland wants to do her next surgery. Then in a month when we go back for her next apt, we will discuss when it will be. As long as it isn't in April, I will be ok with it. April last year was the month that Hades came up from the underworld and lived here on this earth for a month. That was when Lily went into heart failure and we almost lost her. Chris and I would like to spend our anniversary in CA this year, just the 2 of us, we have never been on a vacation together ALONE since we have been married. Our honeymoon lasted all of 2 days because I was so sick, so, time, alone would be wonderful. Not that I wont be calling to check in each day, probably a few times, it will be time to clear my head and reground myself and prepare again. We both know this next surgery will be hard, not as hard as the second one, but harder then the first. They expect us to be at the hospital for at least 2 weeks minimum. To some that isn't bad, but after Lily's 3rd surgery, that is a long time.

So talk to me in a month and I will tell you what the final decision will be. Hopefully May or June. July would be bad because we have to move in July. We will finally be moving into at least a 3 bedroom apartment....if not a 4 bedroom house. Please pray we will become financially situated and ready for that.

All in all, today's apt was uneventful, Dr.Rhee wasn't to thrilled to hear about Lily's sleep apnea episodes, but he said we will look more into it when it comes time to be in the hospital again. Unless it becomes more serious that is. What is, is, tomorrow will come if we like it or not, just what tomorrow brings remains a mystery.

Thank you for all your prayers.
Blessing and Heart Hugs

Monday, March 16, 2009

Until Wednesday then!

I am a little bit worried....ok..maybe not a little bit but a lot a bit worried about Lily right now. She has been having her rapid breathing spells again, which is what she started to have a lot of right before her 3rd open heart surgery. Also her lips are turning a purplish blue again and I can almost guarantee the pressures are continuing to go up on her valve even with the upped dosage of her medication. I am trying not to worry about it because I know, no matter what, she will HAVE to have another surgery. That in a way I would rather it be sooner rather than later because I don't want her heart to be weakened from working to hard. But valve pressures are different or so I am told. All I know is Lily's aortic valve is defected beyond repair and will have to be replaced completely. It doesn't function right and never will. Tick-toc goes the clock, as I watch my precious daughter play around me. I hate to sound morbid, but the Angel of Death, (yes I said Angel and Death together I will elaborate in a min) has been hovering about the heart unit as of late and I am terrified to return but know we can't avoid the return either way.
Ok now what I meant by angel of death. I do not see death as an end, but a beginning to forever. We will spend eternity with our father in heaven. I live by the quote of "Life is a woman's gift, but death is Gods." God sends Angels to stand by those who will have to endure being left behind while another grabs our hands and leads us home. I don't mean angel of death in a bad just sounds a little bit morbid, but I can't think of a better name as of yet.
Until Wednesday there is nothing to do but enjoy each other company and stay stress free, because the outcomes will be the same with or without stress. I would rather play with my baby girl and listen to her giggle and squeal in peace the sit and wonder how much longer we have until she is back at St.Joes. So...with all that being said, we once again ask for you to lift Lily up in prayers. I know most of you pray for her already, but if you can say an extra prayer for her, she needs all that she can get. A fighter she is, but she does not do it alone.

Until Wednesday then.
Heart Hugs and Blessings

Saturday, March 14, 2009

Picture Perfect

First I want to say a MILLION thank your to Rachael Earl for taking these WONDERFUL photos. You captured the day beautifully!

To everyone else who joined us. Thank you for being with us on such a special day. Making it to 1 year old is a HUGE accomplishment. Lily has been through so much over the last year she deserved a big party for a princess, which is what she looked like.

She is just showing how tough she truly is

I call her eyes Angel Eyes...they are so beautiful to look at

One of our family Photos...I have to say this is my favorite

This is Chris's favorite family photo
Lily with Great Grandma Betty

Lily, momm, and Grandma Julie(mommies mom)

Lily and Bela...not only are they both Leapers...but they both have a special heart. Both warrior princesses

The birthday cake I made....not fond of it...but everyone else liked it!

Lily didn't like it

Lily saying hi to our neighbor Nicholas
She was quite the social butterfly that day

There were a million other pics...ok well only 283 of them that I would love to show you but this has taken me over 3 hours to upload these photos...they are such good quality...the files are didn't like them.

I will post in the next day or so how Lily has been. she is sick once again and I think she is having some sleep apnea I have my eye on her...and I am calling the doctors on Monday.

Love and Blessings