Not A Wordless Kind of Day

Yesterday was the official first day of summer and the day here, was beautiful!

Vada and I took our second trip (this week) to Peoria-yesterday afternoon. On Monday we met with the Cardiologist and the heart surgeon and yesterday we met with the Neurologist. From all three doctors Vada was given a clean bill of health, which was the first time for that! As long as her health remains in tip top shape we get a break from the long drives that have become like second nature for me to take. Vada is scheduled to go back in September, that's three whole months of just enjoying our girls, our family and our time together! I am so excited!

Next week, I'll set up her vaccination appointments. Ive mentioned before that I choose to get my children vaccinated but for Vada I have chose to do a prolonged vaccination schedule, basically it means that she will only get one vaccine injection a month. Luckily, I didn't have to find another pediatrician, because hers  agreed to do it the way that I wanted it to be done. Plus, I had the Peoria specialists backing me up on this one.

Here's the best part that came with the two back to back trips-Vada was taken off of all of  her restrictions! That's right..., she can be out and about! Were are going to keep her out of the church nursery however, it would be the only nursery that she would ever be in-at least at this point. Until she is up to date on her vaccines we want to take some extra precautions. Once she is up to date then she will get the chance to join her friends and play while Mommy and Daddy get to fully listen to the sermons. We will also be slowly reintroducing her into large groups but for the most part our lives have returned to normal-whatever that may be!

Oh, I almost forgot..., during the check-in part of the doctors visits Vada was weighed and measured again. Currently she is twenty-seven inches long! She grew! She also weigh's 17 pounds-11 ounces and for those of you who aren't familiar with her age, she is 15 months and 3 weeks old!

Vada has two very special friends who she has been excited to meet and now that she has recovered, she can! One friend is still in the process of recovering from her very own heart repair and the other is just ready to play!

As far as my personal doctors visits go..., well, they have just begun! This morning I went back to the ENT and we set a date to have my tonsils removed! On July 18th I am going to be saying goodbye to these bad boys who are constantly causing me problems! The doctor mentioned doing it sooner because the tonsil is still enlarged and causing some minor discomfort. Plus, I am still having a hard time fully opening my mouth. However, the process of healing from the surgery will actually interfere with some pretty important summer plans, so I asked to push it back just a bit.

Jasmine had another ball game yesterday. Vada and I got home from Peoria fifteen minutes before she had to be on the field  for practice! I was so glad that I had made it home on time to take her and I was even more grateful to be able to watch her play!

There are very few things that I don't like about watching softball. The heat and humidity are the worst and if its too hot,, then its no fun! I love this time in the season however. It's when the girls are all warmed up to the game. They are fully practiced and they know their rolls in their team. Its about this time that the games get really exciting. However, it is also close to the end of the season. Jasmine and her team played beautifully yesterday! They truly kicked some butt! I was proud of each and every girl, especially mine!

On a serious note, I thank God for the coaches that Jasmine's team has, there are three of them and each one is kind hearted. They push the girls to play their best but still allow them to enjoy the game that they are playing. That's how it should be! The team that the girls played yesterday was less fortunate and that's just...sad.

Vada was able to get a little extra time with Grandpa and Grandma during Jazzy's game as well. She of course enjoyed that time and I think it's pretty safe to say that they did too!

This has already been one full week and I am grateful to be able to say that it has also been a pretty great one-my tonsil issues aside!

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.

Sixty-Forty

Ive been avoiding this post since Friday. We've been asked several times since then about our visit to Peoria and I have repeated the story enough to now feel as if the news is a healing wound verses a fresh one. 

The lord has blessed Justin and I with the knowledge of our Sweet baby girls medical "issues" since before her birth. However, no matter how prepared we may have felt in the past or feel at this very moment, when we meet some of these issues head on we turn into frightened children, Or at least I do. When I feel like this I try to take comfort in my faith and my belief in Jesus Christ. In all aspects of my life but especially in moments like these I find God's love for me and all of his children comforting.

When I am breaking in all of the same areas that have been mended too many times to possibly withstand more tragedy, I try to tell myself to take comfort in knowing that God will not give me more than I can handle. It has actually become somewhat of a personal mantra of mine and at times a saying that I also resent.

Driving home on Friday I desperately needed a warm embrace. I try to remember that I am never alone and while driving with Vada in the back seat, how I could possibly feel alone is beside me, but I did. I was tired and trembling and every part of me ached from the knowledge that I would soon face another great fear.

Usually I am fine with the Peoria trips being just Vada and I. I actually almost enjoy that time alone. Its a time that I recollect myself and my thoughts. Today, however, I wished for the company of my husband. I spoke with my sister on the phone and I did appreciated the conversation but I wanted to feel Justin's hand in mine. I wanted to hear his smooth voice saying absolutely nothing yet somehow forming all of the perfect words that I needed to hear.

Sometimes I wonder if I am suppose to endure all of this alone so that I somehow find the person and the voice that I have lost through my depression. Or maybe I am suppose to be reaching out and by breaking through the walls that I have somehow created God is helping me find who I once was. Either way, on this trip home, I felt alone and lost.

On Friday we did end up doing an unscheduled ECHO. The XRAY that was done on Monday had shown Vada's heart to be enlarged and while examining Vada on Friday, Dr. Bramlett had heard more of a murmur than what he was used to and he felt that it would be the best idea to do further testing.

The ECHO showed differences in her heart from the last ECHO. As Dr. Bramlett was describing the changes he pulled out a heart chart that resembled the one below. He flipped it over onto the blank side and began drawling his version of Vada's heart. I have high lighted the areas verses scanning his drawing as it is easier to read this way.


Vada's Pulmonary Valve is still narrowing and has narrowed considerably compared to the ECHO done only a couple of months before this one. The Pulmonary Artery is leaking some, but due to the narrowing of the Valve it is a very minimal leak. The narrowing is actually a benefit to Vada's condition and it protects her lungs from becoming full of blood and causing other complications.

The red is showing the opening between the Right Atrium and the Left Atrium. Basically, there is no wall between the upper two chambers and there needs to be one. However, as scary as this may sound, it is a condition that many people live with their whole youth and into adulthood before ever needing any surgical repair done. The concern falls mostly at the bottom of Vada's heart, between the Right Ventricle and the Left Ventricle. This is shown in blue. The "hole" is very small. In fact it is so small that it is not really effecting her too much altogether. Dr. Bramlett says that her heart condition is what they consider a "perfect defect". If you had to choose between any heart condition, this would be it, because everything is working together to compensate for something that is not fulfilling its duties. One defect helps another and so on. The green is showing that the right ventricle is enlarged. More than likely by a over flow of fluid/blood into that chamber. If you look at this post there is a picture of the XRAY that was done this last Monday and you can tell that her heart is enlarged.




Sixty-forty. That's how the cardiologist is weighing his decision for surgery. Sixty being the greater and where he thinks she needs to have her heart repaired soon, as in this Spring. The forty is his side where waiting has its benefits as well. This Monday Dr. Bramlett and his team will meet with the pediatric cardiac surgeons and from this meeting we should have the answers on which route we will be taking.

Making the decision to proceed with the plans of heart surgery is a decision that is a very difficult to make. At this moment it is not actually being made on the basis of Vada's heart condition, as it is timing. Right now this is a window of opportunity. Vada has been seizure free for quite a while now. She has recovered, for the most part, from being on the ACTH steroid and her heart is now in a position where it could withstand an operation. At one point the cardiac team was saying that her heart was practically inoperable and from fear of the seizures returning the Doctors think that this is our moment to go in.

Its strange because I am terrified of Vada's seizures returning. Not because of what they look like but because of the damage that they and the medications can cause. She is doing so well. "Leaps and bounds" is what her physical therapist always says in reference to her achievements. I lost her for awhile during her seizure treatments. She stopped doing things and stopped smiling. I have her back now, and I don't want to give her up. I am afraid of what all of this may mean. If we do operate then the stress from the surgery could cause the seizures to return. I am being told that it is a strong possibility. If we wait then we may have shut the door on our only opportunity of repairing her heart because, once again, the seizures may return.

Dr. Bramlett said it very well when he told me that this may be a decision where if something happens down the road we may find ourselves wondering if we did in fact make the right decision. He said that this is a situation where questioning ourselves is not something that will help in any way. All we can do is make the decision that is what we believe to be in Vada's best interest and take comfort in the knowledge that we were doing what we thought to be right for her. As much as I don't want the surgery, I believe too, that this is her time.

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.

A New Diagnosis & Two Added Medications

For the last three weeks Vada and I have been taking a trip back to Peoria once a week to see her Neurologist, Dr. Jennings. Today was our third trip. Basically, we are just doing check ups and going back through every test that has been preformed from the previous visit.

Today's visit was scheduled for 11 a.m. Last weeks visit was as well, but it only took about an hour to be seen. Dr. J. doesn't make appointments for Friday's, he just see's patients on an emergency basis. Vada's situation is a bit different because of her treatment and he wants to see her once a week. He also wants a visiting nurse to come three times a week and for us to take Vada to her pediatrician once a week as well.

Before I get into how the visit went I have to say that I think Dr. J. is a great doctor. Soft spoken and seems to have a kind heart. His bedside qualities, I am learning, are hard to find in doctors, let alone specialists. Most specialists, in my short experience, seem to have a chip on their shoulder, or really big heads! Dr. Jennings is down to earth. People(his staff), refer to him as a skinnier short bearded version of Santa Clause. Its a close comparison. In situations like Vada's its nice to have a doctor that is willing to answer any and all of your questions, and he does just that.

It was almost 1 p.m. before Dr. J. finally made it to our room. Everything went smoothly,at least for the first few minutes. The conversation was light. He asked a hand full of his normal questions. "How's she doing? How are you doing? Have you noticed any seizure activity? And so on. He even brought me in a bag of food because we had been there for so long! His own personal stash of trail mix and veggie chips. That's my kind of food! Up until this point I was happy with how the visit was going. I thought I was about to be on my way out, which made me things eve better.

On a side note Jasmine started Karate a month ago. Tonight was her first promotions ceremony. She was going from the beginners white belt to the red belt. I have missed the majority of her classes and I really wanted to be there to cheer her on.

Instead, I was helping hold Vada down while she was stuck five, yes, count them...five times to obtain enough blood for eight vials of blood (they threw in an extra vial, just to be sure they got what they needed).

  This has also become a ritual Friday afternoon activity. Did I mention they had to do it five times? What about the fact that they went through her scull? Its a sad thing to watch, but I refuse to walk out of the room. I always have to help hold Vada. Usually i'm by her head so I can at the very least whisper into her ears, in hopes that my voice may calm her somewhat.

Anyway, things were (note the emphasis on "were") going smoothly, until Dr. J. received a phone call and had to step out for a minute... or thirty-two, but who's counting.

As he entered I noticed he had extra papers in his had. He sat down next to me and said. "I'm glad that everything is going so well, but here's what I am concerned with today." He shuffled through the papers in his hands and pointed down to a bold printed title. Methylmalonic Acid Deficiency. He began discussing levels and acids and then he brought up a name of one of his colleagues,Dr. Hoganson, who was from Chicago. He said that Dr.M would like to see us, but for now he would like to start treating Vada immediately. For what, I was still unclear about.

Turns out Vada has a high levels of Methylmalonic Acid and those levels are increasing. Actually, they seem to be doubling week by week, which is why we are doing weekly blood work. Dr. J. called it "organic" acidemia metabolic disorder. Organic, because we still need to diagnosis which type she is effected with.

Long story short. Dr. J. is out of his field on this one, his words not mine. He cant tell me if Vada will live through this. Its rare.Basically Vada's body is not processing certain acids. So on one side she is going with out them, on the other its building up a storage of toxic acids. Eventually those toxins can build up and "over flow" or over dose her. This can eventually cause her to slip into a coma then pass away. I'm not for sure on the time frames of any of it. I am assuming were okay for awhile because of the three week wait until we meet with Dr.H. from Chicago. Were starting a form treatment to see if it'll help, if it doesn't help it cant hurt.


We began treatment of daily intramuscular(IM) injections of cyanocobalamin, (vitamin B12). Over 90% of children with this deficiency respond to vitamin B12 injections. About 40% of children with this deficiency are helped by this treatment. We also started Levocarnitine orally. L-carnitine is a amino acid that your body producing naturally. Your requires it for energy metabolism and for proper use of fats. The bad thing with the L-carnitine is that a side effect can be seizures. However, if we were to not treat this new condition of Vada's it too could cause another type of seizure.

Our hopes are high, and our faith is even stronger. I don't know what God has in store for us. I'm not angry, but a I would be lying if I said I wasn't bitter. I silently curse the mom's, my friends, who complain about trivial things like their children having headaches, ear aches and runny noses. I have to stop myself before becoming too irritated. I try to remember that they haven't had to suffer with their child like this. Their complaints are significant to them as well, but I still just want to say "Really.. a head ache? How tragic." I try to remind myself that I was once that mother too. Its not fair. Its not fair for me to discredit their concerns and its not fair that Vada is going through this. I know. That's where my bitterness kicks in. The problem for me is that I just don't understand any of this. Why so much? Why with her? I hate to sound like a big baby myself, but she has been through so much, I wish I could take it for her. She deserves a fair chance at life. To run and play like any other child. She has enough to deal with, she doesn't need anything more. I don't hate God, actually, just the opposite. I feel a strong need to be at church, but I cant get there with Vada. So I listen to our pastors sermons on podcast and I pray, a lot. Sometimes I wonder if this is Gods plan. Is he trying to break me? Push me down as far as I can go? Test me? Show me where my place is while secluding me from my friends, family and activities? No. I believe not. Its something else. Maybe its to show me whats really important. Okay, I get it. I know that my husband and children are first, after him. Now, stop this mess. Let Vada grow and live and let us love her and watch her grow. Please.

Dr. J. made a comment yesterday, "Why so many diagnosis for such a small baby." he followed that comment by turning to me and saying "Your a good strong woman, and mother." All I could do was give a weak smile, because inside I was breaking. If he only knew that I was already shattered and worn. "If Vada can be so small and yet so strong, then I have to be too. For her." I said. I stood up and walked out to the desk to make our appointments for the following weeks to come.

That's all. That's all I know for now. Ill continue to read about it so I know what to expect and I will continue to update everyone.

I like to blog. However, I have a hard time finding time to do it. So with that being said, ill try to stay up to date on the important things in life.

And now to sweeten up the situation, a little eye candy. Taken with my cell, so not the highest quality, but still sweet.