As promised, here I sit, with my tall cup of joe with sugarfree hazelnut creamer. Okay.. so my babies... I have the most precious, loving, beautiful babies ever! Yes, I am even calling my teenager my baby! One of these babies in particular is very unique, ( aren't they all though!) and I know alot of people are interested in her journey. I will give you some background on my Kira Jean Beauty Queen... * I am editing this to clearify that she is undiagnosed. She has many symptoms and diagnosis'.. that all come along with an abnormal neurological state. She is a medical mystery.*
I had a completely normal, uneventful pregnancy and delivery. She was quite active in utero, always kicked and did somersaults. All of the run of the mill pregnancy testing was normal, so I had nothing to think, other than I was having a healthy little GIRL.. WOW.. a girl! I have always wanted a girl. I absolutely LOVE being a Momma to boys. I love all that comes along with the ones with pork n beans. I had 3 awesome boys, and I wanted so badly to experience pink and butterflies and flowers.. ahhhhhhh!
I was in early labor for days, when I went to L&D to be accessed. They saw that with each contraction, her heartrate would decel a little. They thought it best to augment my labor with Pitocin that day. This was July 3rd. On a CRAZY side note, I had no idea until a year later that an aquaintance of mine ( now very close friend) was in the room right next door to me, laboring all night with me, and our kids are hours apart. Okay, so.. Kira Jean makes her debut on July 4th at 3:40 a.m. She weighed in at 8lbs 1 oz. and was 19 inches.
Right away, we noticed she wasn't opening her eyes. She did cry a little and move a little at birth, we couldn't tell immediately that she was any different, she just seemed exhausted from the ride. The time that I was in ignorant bliss would only last a few hours. During that time, we had family and friends come over to meet our daughter, it was great! When she was a few hours old, she developed a fever. The doctor had me remove her clothing, and told me that some newborns can develope fevers if they are dehydrated, so he wanted to offer her a bottle. As I was giving her a bottle, she choked up on the milk, and went purple. The nurse came in, and tried the bottle.. same thing. Okay, put the bottle away! So maybe an hour goes by and I have her in my arms, just cuddling, not feeding or moving, and I look over, and there she goes again.. desating! I freak, because this time, there is NO reason for that to have happened. A NICU nurse comes down to get her, to take her for an examination. At this point, her eyes still aren't open, and everyone is assuming its because they are swollen from delivery. They are also thinking the fever is caused by an infection somewhere, so they do a bunch of lab work to determine the cause. In my head, while yes, I am very afraid, I am thinking I only have a couple of obstacles here.... she has to become coordinated with a bottle, and treat the infection.. not too much to deal with, eh!
A day passes.. she has become still and quiet. Her eyes have not opened, she is not reacting to the outside world, and people are taking notice. On day 2, I notice her body almost shivering, but not. It was very mild, but I could see it. I told the Dr. who had already had a thought out conversation with me in his own head, and he asked me to sit and talk with him. Now, before I tell you what this conversation entailed, let me tell you, that I thank our Heavenly Father that I had my Mom by my side at that moment. She has been by my side from day one, and I really feel that I would not be who and how I am mentally without her. She has been my rock through out this journey, I love her so much, I honestly could not have done this without her, I mean it.
So, he sits me down and tells me that he suspects there is something neurological going on with Kira. He says he would like to do an EEG on her brain. I had no idea at that time what an eeg was, but I was understanding that he thought there was something wrong with my daughters brain.. WHAT?! I was shaking uncontrollably as he was telling me this, and her PT later told me she secretly thought Kira was having a seizure in my arms, until she realized it was me. They do the eeg, and I only had to wait a few hours before getting the results.. the horrible, gut wrenching, disgusting results. Here again is where Jesus put another Angel in my presence.. my Sister-in-Law Kim. I had just walked into the Nicu, and was at the sink washing my hands when he, the Neonatologist walked up to deliver the results of her eeg. If I remember word for word, the conversation went like this.. "Are they in?" "Yes." "What are they" "It's very abnormal." "What does that mean? What does that mean? What does that mean?" This is where people talk about shock as being in a dream state. The room was literally spinning, everything went foggy, I went numb, and felt sick. My Sister Kim walked in RIGHT then. Thank you Lord. I sat down, and I remember him having his hands on my knees asking if I can hear him. Jim then came in, sat next to me, and I told him what the results were. All I needed to know is would she make it?! He could not tell me the answer to that. We went into my room and talked about what this meant, what testing they will do, etc. Kira did not suffer lack of oxygen at birth, there was no birth trauma.. so was it the one time I got into the hot tub for 5 minutes? Was it when I fell? Was it because I changed the cat litter? Was it the ocassional coffee I drank.. WHAT caused this?! Here we are 2.5 years later and that question has yet to be answered. I am sure it never will, and I am okay with that now. Her eeg readings are extremely chaotic. They almost show a burst suppression pattern. The brainwaves will be all over the place, no organization to them whatsoever, then all of a sudden, show a flat line.. no activity. An analogy that a Neurologist once made to me about her eeg was, " Trying to read ANYTHING in her eeg, is like trying to hear a cat meow in the middle of rush hour traffic." Normally, in a persons eeg, you can tell when they are asleep or awake, if they react to outside stimuli, etc.. but not my girls.
Kira ended up being in the NICU for exactly one month. The whole time, she had to be kept naked, she kept her mysterious high body temp. If you were to even drape a recieving blanket on her, her temp would shoot up. She was placed on Phenobarbital for her seizures. An NG tube was placed for her feedings, although, back then, she would suck on a bottle some. She never did root, or open her mouth on her own, but if you placed your finger in her mouth and pulled down her tongue, then worked the nipple in, she would start sucking. She came home on oral feedings, but a month later, when I had to take her to the ER for what I thought were out of control siezures, she was found to be failure to thrive. I knew she wasn't eating alot, she would tire out quikly, after a couple of ounces, but she *was* getting some. I did not know she was ftt. During her hospital stay, they placed another NG tube, and we got a feeding pump to take home. She gained 1 pound in a week in the hospital. Poor girl must have been so hungry :( The Intensivist changed her anticonvulsant during that hospitalization, and since almost that moment it seems, she lost what suck she had. This is at 2 months old. During her 1st year of life I would try the bottle, but quikly became very discouraged and depressed until I was no longer even attempting it. I very much regret giving up on her. I am certain she could have learned stronger oral behavior if I would have continued. When she was a few months old, she was diagnosed with autonomic dysfunction. Your autonomic system controls your breathing, body temperature, heartrate, blood pressure... consider it your "automatic system". This is what had put her in the hospital at 2 months old with fever, her arching, sweating buckets, breathing very fast and heart rate in the 220's. Her behavior was textbook autonomic storming, so I am baffled why she wasn't diagnosed sooner, as she has had storms in front of a Neurologist, and I described her symptoms to another Neurologist. Yet, it was her wonderful Intensivist in the PICU who hit the nail on the head and placed her on Propranolol. Kira is on blood Pressure medication, currently Amplodipine and Captopril. She is no longer on Propranolol, because it butts heads with Albueterol, which she needed often for her pneumonias. She is now on Baclofen for her storming. It has regulated her beautifully.
Forgive my bouncing around, but I will forget things, then suddenly remember, and so I may seem to go from present to past, and back to present. At 3 months old, she was put under to have a G-tube placed on her tummy, a nevus removed from her arm, a fundoplication done to stop her GERD from coming up, and muscle, skin, and nerve biopsies taken for testing. Kira has Microcephaly, which means her brain does not grow as it should, and her head circumference is smaller than it should be. At 2.5 years old, her brain is the size of a 2-3 month old. But everyone says you cannot tell. I think it was more noticeable when she was bald. If you saw Kira, you would think she was asleep. She appears to be asleep 24 hours a day. She has never woken up. She does not open her eyes, she does not have any purposeful movements, she does not eat by mouth or speak or cry. But she is the MOST precious, Heavenly Angelic being ever! She has seizures all day long, regardless of what medication or diet we have tried on her. She will lift an arm, turn her head, or roll her eyes open during a seizure. This is the most active I have ever seen her. It just doesn't make sense to me. WHAT is it that gets sparked in her brain during a seizure that allows her eyelids to open and her limbs to move, and why can't she do it without a seizure?! We have been Blessed to recieve her beautiful pink and black wheelchair with her name embroidered on it through Alta Regional. They have also provided us with a Britax carseat, a bath seat and a tumbleform chair. They have been such a Blessing. Her nurse Bruce has been trying to get me to accept respite care for her. Thats where an LVN would come into my home for a few hours a day or week to help me with Kira. I have declined this whole time, because I figure she is mine, I am her Momma, why would I need someone to come into my home and take care of her? I do however see how it could be beneficial for me. They could do range of motion, massage, singing, rocking, etc. while I take care of the baby or spend quality time with Logan. Kira is currently on Baclofen, Captopril, Amplodipine, Bicitrate, Robinul, Klonopin. She has RTA ( acidosis) , and the Bicitrate evens out the acid in her blood. She also has a neurogenic bladder, which means she does not go peepee as soon as she feels the urge. Her bladder will hold it until its a huge balloon, then the flood gates will open. She urinates about 3 times a day. Her bowels don't work as they should either, so I have to give her daily Miralax to keep her stool soft, so she doesn't get compacted. Kira went from Nov. 06 to Jun 07 being in the hospital literally once a month with seperate pneumonias. It was then decided that she was aspirating her own saliva and she was placed on Robinul to thicken and dry out her saliva. She was also ordered a TheraVest. This vest is amazing! It fits like a life jacket, inflates like a blood pressure cuff, and shakes her lungs nice and clear. I'm sure she thinks I took her to Disneyland and put her on a rollercoaster every treatment! Since she recieved alot of steriods during those ill months, she had a beautiful side effect.. hair growth! Her auburn hair has grown so much. It's absolutely gorgeous. Its curly, soft, long hair. I'm SO jealous!
Well I need to refill my coffee cup.. so I will take a break for now.
