Friday, March 26, 2010

I Hate You.......

Today my daughter told me she hated me. She looked directly at me and said, "I hae you....I hae you." She proceeded to roll over with her blanket and bury her head on the couch. I stood in the kitchen stunned, wondering if I just heard what I thought I did. Did my 2 year old just say that to me? Then I looked over at my friend and asked if she heard her say it and she shook her head. Both of us trying to think of anything else it could have been instead of "I hate you."

Where did this come from? Well today was an INR check and with each comes a weight check. We have been battling with Lily's weight since surgery. This little tank, who use to eat food like she would never get any more, now refuses things she once use to eat with glee. I have dealt with a child not eating and being picky. Lucas prepared me in ten fold for that but I didn't ever worry about his weight like I do with Lily's. Now for a heart baby, she is huge. She is above the normal 2 year old curve for girls even without a heart problem, but it is the pure fact that her weight is fluctuating as much as it is, that is our main concern. Losing just under 2lbs in under a week and a half. Granted she has been sick, but she is not been in-taking the amount of calories needed for her little heart. So where does this leave us? Right back to were we started originally, with the icky yucky NG tube. Hence the reason why she told me she hated me today.

As I laid the supplies out, getting everything ready, she started screaming. As soon as she saw me pull out the bag that the pediasure goes into she goes, "No no no no, no no mama, no no." She held her hand over her nose, and ran the other way. Coughing and gagging in pure fear. Then as soon as it goes in, she held her nose screaming "Owww...Owww mama,Owww...take out....take out.." I just held her and rocked, there was nothing more to do. She calmed but she wouldn't look at me, she just wanted to lean against me. She didn't respond to me, in a way it was almost like she was shell shocked. Mommy was the bad guy, I am always the bad guy to her. I am the one that puts these dang tubes down the nose, I am the one who gives her yucky medicine, I am the once who gives her the owwie shots. I take her to the doctors, I allow them to poke and prod her. Most days she still wants me at the end of it, she will still curl into my arms and allow me my daily snuggles, but not today. Today she wanted to get far away from me. I tucked her into bed and kissed her good night, I told her I loved her, in which she usually always responds with, "Uvv Eww." Tonight she rolled over and put her back to me. It was a punch in the gut to me. Lucas hasn't even said he hates me, and he's 6. Austin is 4 and those words haven't uttered past his lips, but not Lily. She has a lot to be mad about, I get it, I would be mad too...she is to young to understand it all and what all of this is for...but it doesn't make it easier. I know come tomorrow she will give me kisses, and granted she will still have her tube, she is usually more forgiving the next day...usually...then again, she has never said she hated me either.

I know she didn't mean it, I know she loves me, but at that moment in time i made her mad, she used a word I didn't even know she knew...

Jenna

Sunday, March 21, 2010

Blogging Hiatus

I have put my self on an unintentional blogging hiatus. More so because of the chaotically hecticness of life right now, but I have kind of hit a mental wall block with my writing. I can't seem to write anything that I deem worthy enough to publish on this blog. You would be amazed to see how many unpublished blogs I have lined up since before Lily's birthday till now. I usually have so many things on my mind when i am sitting down to blog, I can't hone in on the few things that need to be written about at that point in time. Instead it is word vomit, having no structure, and always bouncing. Most times I don't blog for long spurts, it has to do with my own personal mental walls I place in my way. I have plenty to tell, just cant seem to do it in the normal elaborate fashion usually do. So I will make this blog simple so you can know how Lily is doing, seeing that is what most come by to check on.

1: Night terrors- have calmed down, she still has them, just not as much and not as frequently as she was having them. More sleep for baby, more sleep for mommy, makes the house happy.

2: As many know who follow us on facebook, Lily is sick, kind of. She got a pretty bad ear infection, but she also has a yucky cough. Her chest is clear and her labs came back looking good, so the only thing that we all can think of is its just allergies. And in the McLaughlin household, if you don't have allergies, something is wrong with you. Still waiting to talk with Cardiology to see if we may be able to do breathing treatments with her, she use to have arrhythmia problems, so I am always over cautious about anything that accelerates her heart rate.She is pretty wheezy and can't stop coughing at night because of her nose draining down the back of her throat. She is sleeping with her mattress elevated, the humidifier on, with Vick's vapor rub on just to stop the coughing.

3: Lily's INR went out of range at a 7.7 level. To say it freaked me out was an understatement. When I did research in the beginning about Prothrombin time/INR levels, I learned what needed to be learned. I looked into what it means to go out of rage on the lower end and what it means to go out of range on the higher end. Being on the high end means there is an easier chance at internal bleeding when falling, along with brain bleeds, and trying to stop the blood flow all together if she was to cut herself. For example, a little poke on her finger from the doctors office took me 5 mins to get it to stop bleeding. For you and I, we would clot within a few seconds. Once home and talking with the Cardiologist office, we went off of her blood thinner to drop her range, and within 2 days she dropped back in at a safe 2.7, with a slight change to the Milligram dosage, hopefully come Monday all will be well and we will have it behind us.

4: We finally got Lily's at home INR Meter. I have to have a nurse "train" me on using it. But after reading the booklet that came with it, and watching it done twice weekly, I am pretty confident it isn't that big of a deal in doing it. I am excited to get started so we can readjust and be more independent with our time instead of being tied down with doctors appointments.

Ok, that is about it for now. I still am working on Lily's birthday post, such a horrible mama I am this year. I just can't find the right words to say in the post I need to write. I print these off for Lily so she can one day read them, so I try to make them worthy of her.

here are a few pictures, I hope to be back and blogging soon.

Love, Hugs, and Blessings
Jenna



Saturday, March 6, 2010

Terrors of the Night

Screams or pure terror fill the nights of my household. Each night gets worse, yet you can't help to hope for it to be getting better instead. What am I even talking about? Well, Lily has over the last few weeks, developed night terrors. They have steadily gotten worse, in the beginning she would wake up maybe once or twice a night screaming, to which you would talk to her, calm her down and all would be good. 3 weeks later, she woke up 7 times last night, with bone chilling screams, screaming, "NO, NO, NO" and dripping sweat. My voice that usually soothes couldn't reach out to her, would only make her scream worse at times. I frantically tried to figure a way out to soothe her, and of course it all came down to the one thing her and I truly have in common for now, music.

I have a baby Lullaby CD, that has mostly Christian children songs on there, but the one song she truly loves and has always calmed her is "I Only Imagine". It isn't the version sung but Mercy Me, but it is a truly calming version of it. Putting that song on repeat worked for about a good solid 2 hours before the next rounds of screams started. Then I found she likes "Jesus Loves Me". For a little while I heard her lay in her bed trying to sing with it. She recently received a bunny for her birthday that plays the same song and she is in love with it.
(I will post a birthday post here soon, I know I am terribly behind)

45 mins after Jesus Loves Me, she woke again, sobbing and thrashing. I finally lost it, from sleep deprivation or pure frustration and heart break I know not, but I sat and cried with her. I finally sat and sang her the one song she always falls asleep to me singing, and when it didn't work I cried even more.

Never have I had to experience night terrors. Sure my boys may have the occasional bad dreams, but nothing like this. When I brought it up to the PCP, she said it is just the age. When I brought it up to Cardiology, they said it has more to do with Post Traumatic Stress then the age. She remembers it all, and most children don't have night terrors unless something traumatic has occurred in their life. Well Lily has had a lot of traumatic experiences that is for dang sure. And once again I am at a lost for comfort. I couldn't comfort her after her surgeries the way I would like, I couldn't take the pain away, I couldn't just makes it stop for her. Then here I am again, watching on the sidelines as my daughter screams in terror in her bed.

I prayer as I sing, I pray as I cry, I pray as I rock, that God will take these fears from her and soothe her where I can not. Hold her close when she wants me not. To surround her with nothing but pleasant dreams. And I ask that of you too, along with any advice if you have experienced what we are going through. I will endure it, but it is making her exhausted. She isn't getting good sleep and then she fights me for her naps. The circles under her eyes are getting darker by the day it seems. Any tidbit of advice would be great. I slept on the couch last night because even when she is sleeping, she still whimpers or shouts. Chris can sleep through it, I can not....An exhausted mommy is normal in this household, but it is about to get 10 times worse if things don't look up.


Love, Hugs, and Blessings
Jenna

Friday, March 5, 2010

Samanatha

As many of you know, who are my friend on Facebook, the last couple days have been quite emotional for me. I have not wanted to blog, for fear of word vomit.I have been numb,closed off to the pain of everything. Now before many of you get concerned, nothing is wrong with Lily, she is in excellent health. This blog is specifically dedicated to one person. My best friend, girl friend that is, Sami-Jo. My partner in school and in crime (not in the, "Hey Mom, I'm in Jail" sense), my shoulder to lean on, my verbal punching bag in times of frustration, my best friend, and my sister.

Over the last few days I have sat here in a depressed state wanting nothing more to write something meaningful, yet not being able to slow my thoughts long enough to do so. You see, Sami-jo has moved to Georgia, to many it may not be much, but to me it seemed like a world stopping event. How could one person effect me so much you might ask. Well, through my almost 24 years of life, I have had only a handful of friends. Most acquittance's is passing, a friend for that point in time, one you remember, and share memories with, but not ones that share life altering events with. Sami and I have raised babies, birthed new little ones, experienced ups and Downs with our relationships, brinking on divorce, critically ill children, and divorce itself, together we have faced it all, never leaving the others side. Our children have taken baths together, played doctors, house, and unfortunately at a young age, shared a kiss. Going crazy together as we had play dates with five children from the age of infant to our eldest now 6. Sharing passions, dreams, and life trials, you can't help but experience a woven bond of friendship. Having our fall outs and disagreements, things were not always perfect between us. Yet with all that being said, without her a part of me seems missing. I mean, I have spent so much time with her, I have picked up a bit of a twang in my accent. As the old saying goes, "We go together like pea's and carrots."
That has always been a debate of who is the carrots and who are the peas, in the end it never mattered because we hate them both, cooked at least. Over the last few days I have been thinking about how much I am losing without here here. Friends for only 3 years, but seeming like decades. Completing each other sentences before things are even said. We joke that if one of us were male we would have been the perfect couple. But we aren't, and she is now gone. Trying to fill the void with someone else would be pointless, because there can't be another Sami. Sami is one of a kind, like a sunset, there may be the setting of the sun daily, but there will never be two sunsets alike.

Sami has started a new chapter of her life, and granted I am not there to share it in person, I will always be a phone call away to hear of the days happenings. I have to adjust to a "new" normal, seems like I do that often. And what i think cuaght me most off guard was having to do it for something other Lily and her heart. I like change, but I don't like change when it has to do with losing something dear to me. Yet, life goes on, there are planes, trains and automobiles, so we will never be far apart.


Dearest Sami-Jami;
Think of me often while you are out there. Chase a chicken for me and remember to stay away from the fences when you have had a few to many. I miss you so much already, as I was walking to get Lucas today, I looked out into our field, and things seemed to dim a little. (Just so happened the sun hid behind the clouds at that exact moment) AZ seems lonely without you, like something just isn't right. The thought of a girls night without you seems wrong, yet Lindsey and I are going to Starbucks tonight and then to the movies and I am sure you will dominate the conversation. You are my second half, without you i feel a bit deaf...LOL...you chuckled didn't you, because you know you are the same way now...No one says, "HUH" like us, and no one can dance in the car like we can.I heard "Our Song" on the radio taking Lily to her apt today, and I smiled and cried. All i hear is you singing it, just like whenever you hear "Gunpowder and Lead" all you will here me singing it, all the while I am thinking, "Don't screw up the intro, don't screw up."

I have a mission for you ok, can you start looking for a field? You are in the country now, and who better to ask. Find me my field of dreams, and I will come. (Please tell me you have seen that movie) But joking aside, you find it, I will come out, Lily in tow, and we will make cute summer dresses and get straw hats and go dancing through the field. You up for that challenge? I might have to drag Kevin along for pictures.

I love you Samantha-Jo, forever and always. There will never come a day I say Sami-who. You are unforgettable, and I have been blessed to call you my friend. Love you sweetheart!
Forever Friends,
Your Jenna