You are currently browsing the monthly archive for May 2007.

week 26 cartoon

Fetal development in pregnancy week 26: At long last, your little swimmer can see the womb! Your miracle’s little eyelids have finally separated (they were fused closed previously) and they’re probably having their first moments of sight as you read this (or maybe it already happened while you were brushing your teeth or watching Oprah or something). In addition to seeing their little studio in your belly, they’ve recently acquired the ability to say “yes” and “no” in rudimentary sign language as they can now move their head back and forth. This is also the time where your little super star’s head hair is starting to grow! A cute little cowlick or two may be springing into position right now, getting ready for years of cute-but-stubborn bed-head. Also, their toenails have grown in and you little raisin continues to slowly pile up fat beneath their still-loose skin. Most importantly, brain tissue and neurons are all developing at a rapid pace, increasing their (genius-level?) brain activity and will continue to function at accelerated levels for the first seven to eight years of childhood!

And how’s mom doing? This is the final week of your second trimester. As you’ve probably already heard about it plenty, we won’t go on and on about constipation. But if you’re curious why you’ve got to put up with this much-less-than-fun blockage, it’s basically because you’re producing higher levels of progesterone—which you’re producing higher levels of progesterone—which can relax muscle tissue throughout your entire body, including the G.I. tract—which ultimately slows digestion down… waaaay downcan relax muscle tissue throughout your entire body, including the G.I. tract—which ultimately slows digestion down… waaaay down. Not to fear, there are plenty of natural remedies for the joys of constipation, including: increasing your standard fiber intake with fruits and veggies, oatmeal, or whole grains (such as millet, rye and wheat). Another way to get things moving “down there” is to get yourself moving! If you haven’t been very active, try putting some time walking or swimming. Increasing your general activity levels often inspires a bowel movement without requiring a suppository. Many women also experience restless and jittery legs during the second half of pregnancy. It’s a common condition known as Restless Leg Syndrome (or RLS—not a very creative name). Cutting out caffeine, stretching your calf muscles slowly, and some nice and deep muscle massages are generally effective ways to help deal with RLS. Source.

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One hundred

It’s 1am. My husband is still at work. I am cleaning our bedroom and some old clothes out of my closet that have been in a bag for over a year. I start sorting through which clothes I want to keep and which I need to throw (I am nesting, lol) and I find a hideous red and green plaid nightgown that I got for Christmas one year from my grandma…I take one look at it and think ‘eww, throw this crap AWAY!’ Just as I am throwing it into the bag, a one hundred dollar bill falls onto the ground. WTF? How lucky is that? This is the second time me or my hubby has randomly found $100 or more (once my hubby found $500) of our own money somewhere in our stuff! I’m starting to realize that we really suck at keeping track of our money. But hey, we could really use the money, so it’s crazy to find it today!

Chihuahua hair 

Well, you never know what you can find on the Internet, and after seeing this picture of a chihuahua with a wig on on someone’s myspace, I had to know if they actually make wigs for dogs. They, in fact, do.  Not only that, for the overly maniacal pet owner, you can make your beloved fluffy a wig from your own hair. I don’t even know what to say about that.

Well, we got through the MRI, although, it was harder on all of us than I thought it would be.

We woke her up early and she was in a really good mood. Smiling and excited like we were taking her on a suprise trip to Disneyland or something. I felt really guilty that we weren’t. We got there at 7am and checking in and waiting for the MRI took longer than I thought it would but she got to watch Dora and hang out with another little girl waiting for her surgery at Children’s.

When we finally went back for the MRI I could tell she was scared because she was clinging to me and hugging me tight. They told me to lay her down on the table so they could begin the laughing gas and once she was asleep we could take out her earrings and they would take her back and start the IV for the general anesthesia and start the MRI. I told her not to be scared, and that I was right her with her but she didn’t want to lay down on the table, she grabbed tighter around my neck and I didn’t want to let her go. They told me we were going to have to hold her down so they could put the mask on if she didn’t lay down willingly. SoI laid her down and held her shoulder and arms while zech held her legs and she started to cry and tell ‘Mommy, mommy!’ I knew she was so scared and all I wanted to do was pick her up and hug her. They put the mask over her face and she was still crying. I cried the whole time and tried to hold her hand. Her crying got softer and weaker until she was sobbing and her eyes closed and her hand went limp in mine. I was pretty hysterical at this point. Zech put his arm around me and I saw he was crying too. The nurse and anesthesiologist were looking at us like we were one screw loose because we were so emotional and they were only taking her to do an MRI but we didn’t care. If they had been with us after she was born and had gone through what we had with her they would understand. They aren’t in our situation and no one knows the kinds of feelings that came rushing back to me and my husband going through this again. When my daughter was only five days old her doctor took us into a special room and told us that we didn’t have to live like this we could explore all of our options and ‘If we wished we could remove her form the feeding tubes and “let her go” because in situations such as this she might not have the quality of life we had wanted for her.’ We told him to go fuck himself. Literally. We told him that and then we walked out of the room.

Anyways, unless you have been in a situation like ours, lost a child or come close to it, you don’t know what it is like to have all the feelings an emotions of that time come rushing back to you. To go on with story, anyway, they wanted us to take of her earrings so they could do the MRI but we couldn’t get them out of her ears. Both me and Zech were trying as hard as we could but they just wouldn’t come out for some reason. Her pediatrician had pierced them himself and we had kept them in ever since. We only cleaned them and turned them but never took them out. They were getting frustrated with us and kept asking why they wouldn’t come off and if they were bent or something and I told them that I need to just take my time with this and that I didn’t want to hurt her. The nurse actually responded to me by saying “It doesn’t matter she can’t feel it anyway.” (Isn’t that the most ridiculous thing you have ever heard?) Some nurses are idiots. I’m sorry if you are a nurse and are NOT an idiot, but a lot nurses are. They seem like they have seen so much and have gone through so much the lose all empathy and only care that each patient doesn’t make their shift more difficult.  I know this by working with them day in and day out-I actually work as a nursing assistant-and I know this by all the experiences I have had with them when I have been with my daughter through all of her health issues. I have met a few GREAT nurses that I wish more could be like that are so caring it melts your heart.

Once my daughter started finally eating when she was born and I came every three hours day or night to give her a bottle and be with her, through the times a mother should be there, a nurse once came up to me as I woke her up and started changing her diaper and got ready to feed her and said “Is this your first child?” “Yes,” I replied. “Well it shows,” she said in a sarcastic tone. “You’ll learn after a few months with this one not to wake them up when they are sleeping.” I was so pissed Zech had to put his hand on my shoulder cuz he knew I was about to punch her. I really had to hold back. That memory still gets to me after two years. I came to feed my newborn baby and change her diaper (which was soaking) and at the time I wanted to spend as much time with her as possible because everyone told me she was going to die….and I KNOW the only reason the nurse said that to me was to make her job easier for when we went back to the Ronald Mcdonald house so that she wouldn’t have to rock her or anything if she cried. Just keep her asleep and she can go have a fucking coffee break or something.)

Oh yah, story…Yes, she couldn’t feel it right that second but if I wasn’t careful I could tear her cartilage and it would hurt when she woke up. Besides just because your child can’t feel something painful at that moment doesn’t mean you want to do it to them with the knowledge that you are doing something hurtful. We finally got them off and we were escorted back to the waiting room while they started the IV and the MRI. It was hard leaving her there her mouth open and her whole body limp. I never want to see that again.

The spectroscopy MRI takes longer than a regular MRI so it was a very long two hours waiting hand in hand sobbing with my husband recapping what had happened, what we were feeling, and how we never wanted to ever have to take her back to Children’s hospital ever again because it just brought back too much emotion for us to handle. When she came out she was still asleep they wheeled her in a bed to the recovery room with us scampering after her.

They told us we weren’t allowed in there until she started to regain consciousness and then they would only let one of us in at a time. It was supposed to take about 15 minutes or so but by about two minutes I was sobbing and went back to the nurses station to explain to them that I didn’t want her to wake up without me there, all by herself. They told me I could come back right then, she had just woken up and was crying for me.

When I got back there a nurse was holding her and she had her eyes closed like they wouldn’t open and was crying and drooling and couldn’t hold her head up but kept trying to with all her might. It was very hard to see. She was crying ‘momma momma’ over and over as I grabbed her and sat in the rocking chair to tell her mommy’s right here and comfort her but it wan’t really helping. She was really confused and didn’t understand I was there. She still wouldn’t open her eyes and was trying to hold her head and body up but kept slumping over crying and confused.  They finally allowed my hubby and mom to come back there with me and a half hour went by of her crying loudly out for her mommy and being extremely frightened. Her face was breaking out in a rash and she wasn’t coming out of the anesthesia as smoothly as most children do. Her nurse even told us that. (When she had her first MRI at two days old, she had a reaction to the anesthesia to the point where her breathing slowed too much and she was placed on a ventilator for four hours after her MRI.) Luckily enough that didn’t happen this time but this reaction was not fun as well.  I watched as a couple of other toddler’s came into the delivery room they gently woke up, fell back asleep, woke up, fell back asleep on and off for a few moments then sat in their moms arms and watched Aladdin on the TV and ate a Popsicle. A couple of them cried for a few minutes but were comforted by their moms arms and the movie and stopped after a minute or two and then they got discharged and left. Kayla on the other hand seemed so terrified she could not stop crying and begging for her mommy even though I was rocking her the whole time saying mommy is here, I love you, it’s okay. She still wouldn’t open her eyes and when the nurses came up and started talking she couldn’t see what was going on and started crying even more, which didn’t stop the nurses for coming over every five seconds to try to stick Popsicles or juice or graham crackers in her face that I had already told them she wasn’t interested in at the moment –Her bed was right by the nurses station and her crying was interrupting carne asada burrito hour or something.  One of the nurses came up and said ‘why don’t we give her some tylenol?’ (Which is nurse for ‘Pain medication is our answer for everything when someone is crying or bothering us) She hadn’t had surgery or anything but I though I guess we can try it but I don’t think tylenol works on terrifed toddler/bad reactions to anesthesia. She tried to shove it in her mouth and Kayla started crying harder so I told her nevermind just throw it away. Then the nurse asked us if we just wanted to leave and they could discharge us. I actually didn’t want to leave because she was still broken out in a rash and couldn’t open her eyes or hold her head up and it had been quite some time. After a little while another nurse came over and suggested the Tylenol again so I was like fine just let me do it. After that I just went over and signed the discharge papers and took her out the way she was. As soon as we got down out of the building and parking lot and into the van she started to realize where she was and started coming out of it more and more, was holding her head up and keeping her eyes open watching the telletubbies on the screen in the car. I think that when I could finally breathe and relax and it felt great to drive away from that hospital and closer to home. She still couldn’t walk without falling over or running into things for about an hour after we got home (and it’s  a half hour drive home plus she spent over an hour in the recovery room) I don’t know if a lot of kids have had reactions like that but it really sucked and am glad to be rid of the whole situation. I love her more than anything in the world and I want to protect her from everything I can, especially when she was just absolutely terrified like that. I’m sure any loving parent would.

Anyways sorry this story took so incredibly long, and I am impressed if you are actually still reading this. They said her neurologist should have the results in the next four days and then we just need to go hear what’s up from her. At this point though, I don’t even care. She is perfect. Nothing is going to change that.

MRI

(No that is not my daughter’s. Just there for visual effect.) 

So tomorrow I take my darling little girl to get her second MRI. She had her first one when she was about two days old but I wasn’t as terrified about it then in light of all that was going on with her medically I was just terrified in general. Anything to help me understand why I might be losing my new born little angel was more of a relief than a nightmare. But now, as my little girl has done so well and is such a bright and beautiful toddler, I question whether or not this one is a mistake. They want to make sure nothing has changed, and see if the damage they saw initially on her MRI might have been exaggerated by any swelling the strokes may have caused. If they get a better look at exactly what parts of her brain are damaged, they will have a better chance of knowing what to focus on, and just how much of her language center is destroyed.

I am terrified. I might as well not sleep tonight, seeing as how I don’t know how I can and we have to be up at 5am, but, I think if I do stay up I might be even more emotional in the morning due to lack of sleep. (I’m emotional anyway, I’m pregnant. They go hand in hand.) No one really understands why I’m as terrified as I am, but, it makes sense to me.

They are doing a HR spectroscopy MRI (MRI Spectroscopy (MRS) is a special technique used for characterization of the biochemistry of tumors, infarcts, and other pathology. ) Which I guess means she has to be under anesthesia for about two and a half hours as she has to hold absolutely still and there is no way a two year old will willingly do this. I hate the thought that she is going to be “put under” or even that I have to leave her side for the actual MRI. If you are a parent, I’m sure you agree. When they did a basic review of the procedure with me over the phone they told me that she could have nothing to eat or drink after midnight, no jewelry, earrings, blah, blah, but they told me I could stay with her and hold her while they gave the laughing gas. (They are going to administer the laughing gas through a special children’s mask until she falls asleep, then once she is out we will be asked to wait in the waiting room and then the anesthesiologist will administer the IV and the actual anesthesia that will keep her out for the whole procedure.) When she goes to recovery we can go join her.

I am happy that I get to be by her side comforting her until she falls asleep from the laughing gas, but I know, as hard as I try not to, I will cry and scare her even more than the scary mask they are holding over her face until she falls asleep will. I don’t even like thinking about this whole situation. I feel like she is going in for a heart transplant or something I am so nervous. It’s gonna be a long night.

I’ve got more health problems at this point then I could possibly even think up. Why am I falling apart?

Kayla with glasses

Kayla went to her friend Anthony’s birthday party yesterday. Here she is showing off her cool shades…

I had a good time at her little friend’s party, but I couldn’t help thinking that the other kids had quite a spectacular vocabulary compared to my little one. A little red haired girl that was there used the sentence, “That is Anthony’s mommy.” Anthony himself can say “They swung the stick at Elmo’s head and it fell off.” (Referring to my daughter’s party last month in which we had an Elmo shaped pinata that I guess was pretty traumatic to see beaten with a stick. So traumatic, in fact, that this kid that was at her party still talks about it everyday.) Of course when that sentence is said out loud by a toddler it doesn’t sound quite like that, a little more like “Day swung da stick ad emo’s hed init fell owff.” But still, not the point. My daughter is still running around the party saying nothing but “Ball!” Which isn’t even correct in that sense because she is referring to the balloons. Every time I bring up her speech to family or friends they say one of the following statements;

1. She will catch up I’m sure.

2. Well if she walked out of this whole thing with only a little bit of a speech problem then we should be happy! (For all that don’t know what I’m referring to is that my daughter suffered two strokes when she was born that caused quite a bit of brain damage and according to the prognosis that her neurologist gave after seeing her MRI, she isn’t supposed to be doing the things that she is…we don’t know how or why, she is just a miracle.)

3. Yeah, but your daughter is really smart when it comes to other things!

I guess I don’t really like any of these statements because although she may catch up in her speech, to me, it still foreshadows her future in school. Of course I am extremely grateful that she can do the things she does. Of course I am proud of everything she does and how hard she works. Of course I think she is a very intelligent little girl even if we pretend this whole thing never happened. But she is already having trouble at two years old. What problems are we going to have when they expect her to learn to read, spell, figure out an algebra equation? Will I be trying to get her into every new tutoring program I can find? Sticking her in “special education” classes? Taking her out of regular high school to put her into a specialty school just so she can graduate? Will she even have a chance at going to college?

I will love every bit as much if this is or isn’t the case, DUH, I just can’t stand the fact that I won’t know the extent of the damage until we are there, the not knowing. I will learn more and more each year and I guess I am just supposed to tell myself that we will cross that bridge when we get there, but how am I supposed to do that? Do I pretend like nothing has happened like the rest of my family (especially my husband) does and say, ‘she will be fine, she will be normal?’ Or do I get extremely proactive on the whole situation and make sure she gets all the help and resources available to her? I think choice number two is the obvious answer. She is starting speech therapy soon, which I think is a great plan. Why not give her all the help I can, maybe minimize the damage in the future? When we come to the next bridge, we will cross it. I just HATE not knowing now and I can’t even wait to get to the bridge.

 

 

Kayla and her hair...

I swear I only drew on the paper!

Some fun pics of Kayla I took today after we drew in her coloring book. She got a hold of one of the markers and left the room, came back looking like this…But I love the look she made when she got caught. The black and white pic I thought was cute too and had to throw in after my hubby “fixed” her hair.

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I am a mother to two girls; one is my little miracle "baby" and the other is brand new. This is life with a special needs child and a newborn...>> >>More...