Smelling Sweetness and Other Random Things

Over the past several days I have been thinking a lot about writing. I have been making a list and adding to it every day with different things to write about, catch up on and even things that will correspond with pictures that I have taken (and some that won't). I keep pushing writing off, telling myself that I will have time to "catch up" when im in the hospital, after everyone has gone home and its just V and I. On several occasions I have sat down to begin one of the many things on that particular list. However, when I do, reality becomes more clear and I am flooded with emotions that I am just not ready to feel or face at the moment. Right now, all I  want to do is humbly bow my head, fade ever so slightly into the mix and get to the other side.

Over the last couple of weeks I have found myself inhaling longer and harder when Vada is in my arms. I like catching a breath of her sweetness and holding that breath in just a little longer than usual. It's that same sweetness that I thought I would never inhale when I was pregnant with her. I don't ever want to miss her smell.

Weather she is reaching up to touch her daddy's face, falling asleep with Grandpa in his chair or playing with her sisters I can not help but to see these once everyday actions differently now. I find myself praying to God continuously, asking for moments such as these to not be last moments.

Daddy plays the guitar and sings for Vada and she loves it!

Best Buddies. Grandpa and Vada.

Vada and Grandpa. I took this with my cell, but had to show it off because they are so cute together.

She is really finding her voice now. She uses pitches and volumes that I never knew existed and she still makes them sound as if they are coming from an angel, even at three in the morning. She is getting up on all fours and holding a stand when she can place her hands on something to steady herself. She signs for "Mama" and "Dada". Although she doesn't bring her thumb to her chin or forehead yet, but clearly she knows the hand movement and bangs her tiny thumb whenever we come into a room. She calls me "Dada" and Justin "Mama", at least when we are altogether and we think its because we are always saying the opposite and somehow have confused our titles. She knows us regardless and this is just another sweet part of her that makes my heart beat faster.

Her laugh is priceless.

With two days left I find myself not wanting to let her go, not wanting to let her out of my sight even. She is cutting more teeth and is "needy" so in a round about way I guess that I am getting what I want because she only wants me, the majority of the time.

She knows where the tub is and what it's used for...she wanted her bath!

I love giving her baths in the kitchen sink..

Justin and I have found ourselves arguing about some of the most ridiculous things lately and we are not the arguing type. Stress and the unknown has gotten to us but for the most part we are holding up and it is certainly not a "trouble in paradise" type of situation. The past couple of days we have been making more conscience efforts to spend one on one time with each other in the evenings when he gets home from work. Usually, were all here with each other but this is time that him and I sit down with each other. The last two nights we have watched a movie with each other before he had to go to bed for work in the morning. Its not like were sitting there talking deeply abut anything, were just together and it comforting. Today his work had a family day. His dad, two of his friends and I came and took the tour. It was a slow day so we were lucky enough to have him as our own personal tour guide. It was really nice.

This is how her hair grows...

Jasmine hasn't said much over all, in regards to Vada's up coming surgery. Maybe I should have brought up the surgery in front of the girls more often than I did and maybe I should have asked how the girls were feeling in regards to the surgery more but I didn't want to push the subject. Jasmine is at her grandparents for the weekend, for her visitations with her bio., she left yesterday but called last night, crying. She was ready to talk about her feelings. I am glad that Jasmine finally did come to me. After talking for some time we let each other go for the night. I think that when we ended our conversation she was in a better place than when we first began talking.

Yes, Vada has a black eye. Compliments of mommy and the vacuum cleaner... :(

Sometimes choosing one picture is just too hard...

Kiliegh seems to be the one who is the wisest or at the very least taking it all in the easiest.Twice she has made comments that if I were alone would have brought to my knees. Luckily, both comments were made in the car where she was behind me and couldn't see the tears that had filled my eyes. Once was when she was talking to her friend about the surgery. She had stopped in the middle of the conversation and asked me if Vada could die during the surgery. I answered with what I believed to be the truth. I said that I didn't think that she would die but that it was a possibility. I said that it was God's choice and that I didn't know what his plan for Vada was or is. I told her that our job was to keep praying and to have faith. Before I could say anything more she looked up towards the sky and said "No God, don't you dare! Don't you take her." and then responded to me with what I was unable to finish saying, "The surgery could save her life too, right." It was more of a statement than a question, which I replied to with, "That's right".

One of the sweetest girls I know. I am so blessed to be able to say that she is my daughter.

We put Vada back into seclusion over a week ago to help protect her from catching something else prior to her surgery. She had had a cough since we took the girls to Grand Harbor, which was around three weeks ago and we were really concerned that if it didn't go away the surgery would be postponed until it did.  She had actually been on an antibiotic, due to a possible ear infection, but the cough survived through the medication. This last Monday the cardiologist put her on Lasix and with in two days the cough was gone. Now we are being cautious with where she goes and who she around.

In her swing from her Uncle Aaron and Aunt Calder.

Arrangements have been made covering what seems like all aspects of our lives and everything other than the real issue(s) with our dog (which is a whole other story) have been covered. With less than two days left until we leave for Peoria there's not much left for us/me to do, which is comforting and also why I am sitting here writing again.

Her first bite of a cookie.

Kiliegh has her first dance recital tomorrow and thanks to a special friend who will be coming to sit with Vada I will be able to attend her program. I have plans to make banana bread to send with Jasmine. (It's one of her favorite things to eat for breakfast.) I have to help cut Justin's hair, pay the bills and pack a few last minute items, like my toothbrush and toothpaste and that's basically it. I'm not ready for this journey but im ready. Personally, am just eager to get Vada back home...and we haven't even left yet.

Vada's Newest Heart Pictures and My Newest Fears

Today I took Vada to our local hospital for a chest XRAY. This up coming Friday we go back to Peoria to meet with the Cardiologist. As things stand right now we are only doing this XRAY. However, if her heart is in a questionable condition, then we will do a unscheduled ECHO.

This is the second time that I have held her XRAY in my hands. Last time I didn't look at the disk. I don't know why but I never thought to do so.  In fact at this moment, after reviewing this current XRAY, I am kicking my self for not looking at the last one when I had it in my possession. Actually, I am kind of kicking myself now, for looking at this one but that's me.

Truthfully, I am not one of those people who wait and think of only happy thoughts. I try to be, my husband is, for the most part and I think that his optimism is a testimony of his trust and faith in God, not that I don't share those same things. My upbringing was just different than his and it has caused me to see things and deal with things differently than him. My past has molded me into who I am today. I am an all or nothing, tell it to me straight and don't sugar coat it type of person. Rip off the damn bandage and screw the the raw patch of skin left behind from doing it. I would rather know what I am dealing with upfront no matter how severe, rather than figuring out the degree of a situation on my own.

My personality has brought problems in the past. I often worry myself too much and annoy others from doing so. Ill admit that sometimes knowing isn't always the greatest thing but I would still rather know than not. I cant help the way that I am, I mean, I control myself but as much as I hide my feelings and thoughts, I still feel and think them. I love Vada and I am scared to death of loosing her. I am scared of the prolonging of her heart repair and the surgery in general. I am terrified of her seizures and what they can do. I'm scared of the medications that we will have to use if the seizures do come back. This is all scary to me. Do I enjoy her any less because of my fears? Not a single fraction of a bit. I enjoy every moment with her. She is an amazing baby and I am proud and grateful to be her mother. I refuse to let my fears consume the time that I have with her or with anyone else in my life. I keep my eyes forward and I charge through each and every battle that arises because it is what I do. I am a fighter I always have been and I always will be and I know that Vada is too.

Wow, what a rant...
Anyway, lately, I have been a little (yes, a little) concerned and at the same time grateful for this up coming appointment. I haven't noticed anything different or even concerning in Vada except for one thing. I mentioned it on Sunday to my pastors wife and to one other person. Often people look at me as if I am a "worry wort" or irrational. It's possible that I am a bit of both but to avoid the comments and the looks that are often shared when I express myself, I have withheld these new concerns and maintained my composure. Now that I have looked at this XRAY, I am even more concerned than I was. Go figure.

Vada put me on alert about a week or so ago. I can not pinpoint the first moment, but several moments altogether do stick out. Vada laying on the floor playing, babbling, just waking up, after crying and in her car seat when doing nothing what so ever except for sitting. She has begun panting. At first I thought the seizures were back. Vada always had rapid breathing through her seizures. (Click here to see video's of Vada's seizures. The first are the most accurate. They were done before she started ACTH and are without doubt West syndrome/Infantile Spasms.) 

Over the past week I have pulled over twice to watch Vada during these odd breathing episodes and like I have mentioned, there have been plenty of them. However, not once has there been anything else attached to the breathing. No signs of seizures. No blue lips or discolored skin. Her temperament is always her normal laid back baby way and it doesn't seem to matter what she is doing, or not doing, when her breathing changes.It seems like she is just catching her breath from a long run and then once she has all is well.

I cant help but think that this is it, or the beginning of it.

 Isn't this amazing. This is my baby's heart. Her inner workings. Her life line. Its beautiful.

So anyway, I peaked at the XRAY. I couldn't save the pictures to my files so I did the next best thing, I took a picture of the picture and I've posted them above. In November of last year I posted a chest XRAY that was done during one of Vada's many inpatient stays at OSF, see here for that picture-it is all I have to compare this recent one to. Clearly, her heart is larger. I am no doctor, obviously.  I claim to only know what I have been told from specialists and what I have read myself. I don't claim to know a single thing about the pictures that I am sharing and until Friday I wont know anything more. These are just my thoughts and some more of my fears.

For those of you who are unfamiliar with Vada's heart condition she has ASD and VSD also known as or refereed to as Complete Endocardial Cushion Defect. She also has a leaking valve and an narrowing artery.

You know how at times you don't want to talk about a certain subject for fear of some how changing the out come? Well, I am hoping that from venting my fears once again, that I will have made myself look like a fool come this Friday. I know realistically however, its all in God's hands and I trust him.