Saturday, February 27, 2010

Not Forgotten

This blog focuses so much on our struggles with Anna. I never want to look back or have Carly look back and think she wasn't just as important as Anna. It is so hard when you have 2 or more children to be sure you give them equal attention but when one of them has special needs it is even harder to find the balance. Carly is such an amazing kid! She never ceases to amaze me with her intelligence, wit, and tender heart. Anna is so lucky to have her for a big sister. There are many times I find Carly just snuggled up in the bed with Anna patting her back or just trying to comfort her and I am amazed at her sweetness. Every night when she says her prayers she prays for her baby sister. She readily gives up her toys when Anna steals them from her and just says, "It's o.k., she can have it." I had a parent teacher conference last week at Carly's school. There are 3 special needs kids in her class. Her teacher was telling me how involved Carly is with the special needs kids. She told me there is an autistic boy who just loves Carly and will come and hug Carly and not let her go. Carly just stands there until Caleb is finished hugging her and is never bothered by it. She lets Ashley, a girl with Down's Syndrome, hug and kiss her and has even tried to learn some sign language so she can communicate with Ashley. Her teacher said she is doing a little better since we are addressing her anxiety problems. The only problem with her now is that when she finishes her work she tends to get up and dance around the room. Oh well, there are worse things :) I love her teacher and wish Carly could just stay in Kindergarten forever! My Carly, she will always be my baby, my first born. Don't get me wrong, she has her moments where she is so "5 years old" but I wouldn't change her. She is perfect to me and I thank God for her!

Carly's Post


Tuesday, February 23, 2010

She Gets It

Anna's happiest moments come when she is contained in a small space, any small space.

I have often wondered what Anna thinks about her G button or if she ever even thinks about it. She does not have the words to tell me. I do not think it bothers her. She mostly leaves it alone except when it comes open she closes it. I do not know how it feels to her when it is open. I don't know if it feels weird or if she just knows it is supposed to be closed. I am happy, however, that she has the dexterity to close it. If I ask her where her button is, she will show me. During the night she will happily pull the extension set out and let tube feeds pour into the bed which does not make for a happy mama. Anyway, last night I got confirmation that she gets it. She has gotten her nasty junky cough back. She only coughs at night and I am beginning to suspect it is related to her reflux which puts us one step closer to the fundo...grrrr. Anyway, I thought I would try some cough medicine so I got her up out of bed and took her to the kitchen. I got the cough medicine and went towards her mouth with it. She promptly closed her mouth, pulled up her shirt, and opened her button. Apparently the medicine tastes bad. I laughed and was happy because I suddenly realized, she gets it.

Saturday, February 20, 2010

Forgiveness And A Fundo

First off, excuse the crappy formatting. Blogger and I are doing battle again...
Beth Moore has an interesting explanation of forgiveness that I think illustrates it well. Life is a pitcher (I actually prefer a bottle of Reisling over a pitcher). All kidding aside, life is like a pitcher. If your pitcher is full of anger there is no room for anything else in it. As you begin to pour out the anger you make room for other things and God will fill your pitcher with His love as you allow the anger to pour out. I am working to pour the anger out. I had to work yesterday and I had a really hard day. The work itself was not bad but I was emotionally bankrupt yesterday and it is so hard to care for critically ill people when you feel that way. I came home last night and prayed hard. I prayed this prayer over and over...
I am coming to you because I need to forgive __________. I don't have anything to bring except all of this pain and anger about what has happened. Lord, I do not know what to do with it all so I am bringing it to you and laying it at your feet. Your word says I have to forgive _________ so I am making the decision to do it. Please heal me on the inside so I can let go of this. I pray for ___________. Please deal with him in the way only you know is best. Heal him and bless him also Lord. Thank you Lord for taking all of this from me. Thank you for healing me. I ask this is Jesus name. Amen."

I woke up this morning and my heart has already begun to soften. I feel so much better today already. I know that this is just the beginning of my journey but I am so glad to have taken the right road. Work was so much easier today and I felt like there was more of me to give today. God is amazing and his capacity to heal in unending. I will continue to pray this prayer daily, along with others, and I know that I will be free from the hurt and anger.
Anna and I spent the day in Ft Worth on Monday for her neurology and GI appointments. Both went very well. At the GI appointment she weighed in at a whopping 25 lbs. That is almost 1 lb for every month she has been alive. Her goal is to gain 10-11 grams a day. She gained 8 grams a day. At her last appointment she was only gaining 5 grams a day so we are headed in the right direction. We will continue trying to go up on her feeds to up her daily gram increase. Dr Ogunmola was pleased with her gain but said if we can't get her feeds up higher without puke then she will need the fundo. I really do not want to put her through another surgery and am hoping and praying we can accomplish the increased feeds without it. We are just now back to where we were before she got sick a few weeks ago. We will keep going up slowly. We have until May to prove we can do it or else she will need the fundo. There was a time when I thought the fundo would be the fix but I have read about how painful it can be and all the venting it requires and I just don't want to add any more pain to my child's life. Then it was off to Dr. Hernandez. He too was pleased with Anna's progress. He gave us a list of things we needed to be working on and also urged us to again follow up with the geneticist. I told him we had not followed up because we were "doctored out". He said he understood but made me agree to at least follow up with her once a year. I reluctantly agreed and we will be seeing her again on March 15. Luckily she is coming to Denton so we do not have to go all the way to Ft Worth. I am so thankful for our current team of doctors and the work they do. Anna continues to do well in speech also. Brad does amazing work and we are so blessed to have him. I do not look forward to the day Anna turns 3 and we loose him. I visited the DHS office on Wednesday and am finally getting moving on TEFRA. It is a medicaid waiver type program. It will require us to keep our health insurance for Anna but will put her on Medicaid as a secondary. I have mixed feelings about it but her medical costs are huge and we need the help. I pay into the system so I guess I will accept the little help we actually qualify for. I have to go back Monday for a face to face interview with them. I already got our SSI denial due to our income so hopefully that will speed up the process.

It has certainly been a roller coaster of a week but I am proud to say I have come out on top,
and I intend to keep it that way...

Wednesday, February 17, 2010

Trying To Stay Out Of The Gutter

Anonymous said:
"There are many opportunities/ways for things to go wrong in a pregnancy... age of parents, difficulty in getting pregnant as maybe a sign of eggs that are not so healthy anymore, diabetes in pregnancy, medications taken during pregnancy, bumps or accidents during pregnancy ... the list is endless. As a society we have been led to believe that all pregnancies end in the way we expected them to end. Sometimes, sadly, that is not so. There are so many things that can alter the outcome. Looking for a person to point to must be so tempting. I am glad that you are happy and your little girl seems to be too. Rejoice in this time of happiness and move on. Life has plenty of opportunities for future things to go not so well or just right. Look for the just right things and try to move past what isn't."

I realize that by having this blog I have opened myself up to whatever people choose to think or say about what I have to say. The above comment was posted on my blog early this morning. At first glance it made me really angry and brought me to tears. How dare someone tell me to move on when they have not walked a mile in my shoes. How dare someone act as if my "old eggs" were the cause of the problem. I was really ready to get down in the gutter and fight back. Then I called my voice of wisdom and reason (who also happens to be my sister) and was able to calm down and see things from a different perspective. Maybe the person above has walked in my shoes and knows where I have been. I do not think that is the case, I am pretty sure I know where the comment came from but I digress. I was also able to really look deeper into why I am really so angry and why I am so hurt. I realize that the fact that Anna is even alive is nothing short of a miracle. The potential was there for her to need to be delivered at 24-25 weeks in which case she might not have survived at all. I do believe there were mistakes made along the way after that and I believe they contributed to Anna's brain injury. The truth is though that I realize people are people and they sometimes make mistakes. Lord knows I have made plenty of my own. I never once thought or believed that anything done or not done had a malicious intent. What I am really angry about is the way I was treated after the fact. I feel like I deserved an "I am so sorry that things turned out the way they did and I am sorry for any pain that any decisions I made have caused you and your family." Instead I got "Shit happens." I did not deserve to be talked to like that. I am tired of being angry and I am tired of hurting. I truly want to be able to put this behind me and move on. I will not lie, there are still days I do want to get down in the gutter and fight dirty but those days are dwindling and the days that I want to take the high road are growing. I am proud of that. The problem is that I really do not know how to move on. It is a struggle that I am afraid I will deal with for a long time to come. I thought at sometime that an apology would make it all better but I know it is something I will not get, and especially not now since I have opened up the litigation dialogue. Although the litigation process is over for us I know that even if someone had been willing to apologize before that they most certainly will not be now and I am responsible for that. I own that. Through all of my pain I am still certain that Anna is and will continue to be ok. She will grow up and be all that I had dreamed of even though the road getting there was not what I had planned. At times I realize my brutal honesty and raw emotions are a lot to read and consider but this is my therapy and I am pretty certain there are others in the same place. So I am trying. I am trying to forgive. I commit to pray daily that somehow my heart will be transformed and that the forgiveness I was given even though I didn't deserve it will be something I too can give to someone who might not even deserve it. I ask you again to please be patient with me, I am trying...

Tuesday, February 16, 2010

Reaping The Reward

When Kenneth is gone I let the girls sleep with me. Watching them sleep makes every struggle suddenly slip away. They are both perfect, each in their own way.

Saturday, February 13, 2010

Why It Hurts So Bad

Grief is such a screwed up thing! I will think I have worked through so much of it and then it just comes back out of nowhere and knocks me to the ground. I have tried hard not to point fingers on this blog and to not tell how Anna's story came to be from my point of view but because of what happened yesterday I will no longer be silent. I must continue to fight for her. We had found a law firm and filed a claim on Anna's behalf but we cannot move forward anymore. It isn't because the doctor didn't screw up but because he didn't screw up one big time. He screwed up a bunch of little times. I know that makes no sense, but keep reading and it eventually will. In a case that is trying to prove when and how a neurological injury occurred there must be a clear cut defining moment that shows exactly when in time the brain damage occurred and that if someone had intervened at that time then the brain injury would have been prevented. In our case, there was not one defining moment. There were instead many moments, any of which could have been the cause, but no clear cut thing to show exactly when the damage occurred. The law firm and expert both believe Anna should have been delivered earlier and that earlier delivery would have sparred her brain. But instead of a quick decline while not tolerating the hostile environment in my womb, she was just slowly withering away in there while fighting to survive. She never had a "really really" bad non-stress test or a "really really" bad biophysical profile. What she did have was, by ultrasound, a slowly growing body. A body whose stomach just kept getting smaller and smaller on the percentage chart because her body was trying its best to shunt blood flow to her brain so that it would keep growing and in turn her abdominal growth slowed way down. She went within a couple of weeks from 50% in abdominal circumference to less than 10%. I was referred to a Maternal Fetal Medicine specialist early in my pregnancy due to my taking an antidepressant but when things got bad in my pregnancy I was not ever referred back to her. I had a family practice physician who thought he could handle my case and never realized he was way out of his league. I was sick and so was my baby and he was not equipped to handle it. He never ordered Doppler scans to see how the blood flow to Anna was. On the morning of my amniocentesis that I had to basically beg for (at 38 weeks) which was being performed by another Dr. (with whom I have no problem and so wish I could go back and switch to her) it was found that there was hardly any amniotic fluid left. She said I needed to be delivered immediately. My doctor, nope, he asked the nurses if it was convenient for them to deliver me that day or if would be better for them to wait until the next day. After Anna was born she was, according to the nurses notes time and time again "dusky, lethargic, grunting..." but she was never placed on oxygen and her distress was never addressed. Then when at 4 months of age we were sent to a GI because Anna wasn't gaining weight we were told by that GI that he felt the problem was neurologic in origin. The same Dr. that had delivered me just kept saying he just couldn't see it, that my baby was fine. Turned out the GI was right. Then the final blow came when I tried to talk to the doctor about how I felt about what he had done and where I felt he had failed me and failed my daughter. I tried to explain that he has been able to move on and doesn't have to ever think again about what happened but that we are daily left to deal with the damage to our daughter's brain. His response..."Shit Happens." This lawsuit was never about money. We will be OK financially. We may struggle sometimes but we will be OK. We will find ways to provide what Anna needs and we do not need a Dr's money to do that. What this lawsuit was about was forcing someone to take responsibility for the pain they have caused. Every night when we put Anna to bed and hook her up to a feeding pump I am reminded that this was preventable. Every Wednesday when Anna has speech I am reminded that this was preventable. With every milestone that is missed I am reminded that this was preventable. With every pill that I have to give Anna every night for sleep and reflux and motility problems I am reminded that this was preventable. Every time I have to take Anna to a Dr's appointment I am reminded that this was preventable. I am mad and my heart hurts. Although Anna is happy she is having to go through things she should not have ever had to deal with. She is having to do these things because someone thought they were smart enough to deal with something they had no business messing around with. I had hoped that holding him legally responsible would somehow make it better but once again he is able to slither his way out of having to take responsibility for anything. So I am left to find some way to make peace with this but for now I can't and I don't even want to. I am just mad and sad and hurt that my baby has a brain injury that could have been prevented and the person responsible will never even have the balls to say "I'm sorry."

Friday, February 12, 2010

Guess Who Likes Snow

You guessed it...NOT ANNA!!!!!

Still not happy about it!

Carly couldn't get enough of it!

Finally, Carly was able to get Anna to half way smile.

Monday, February 8, 2010

The Grape(skin)s Of Wrath

Happiness is ugly boots that are way too big and uglier pajamas that are way way too big!

Grapes are officially off the market for Anna. I have recently noticed a pattern that every time she eats them during the day, she pukes them up at night. I do not know if it is an allergy or just her inability to digest the skins but either way it doesn't really matter. She is done with grapes because I am done cleaning grape skins out of the bed at 2am. She is finally well and I am so thankful! We are having to slowly go back up on her feeds to try to get her back to where we were pre-sickness. She has vomited twice while going back up but she had also had grapes both times so I don't know if the culprit is the increase in volume or the grapes. We will see as the grapes are gone and we continue to increase the volume and calorie content at night. But enough about puke...

I was reading back through my posts and I want to make something perfectly clear that I am not sure is clear. Anna is a happy child and we are happy people. She is not a sad child or someone to be pitied. Yes, things are different for her and things are different for us, but we are happy and well adjusted. Having a special needs kids does change everything but some changes are for the better. Anna and Carly both know they are loved and in the end that is the biggest thing. I was reading Ellen's post and it really summed up what I feel. I do not want my child to be pitied and I certainly do not want pity either. The purpose of this blog is to inform and maybe help some other parent who is just now beginning on this journey to see how sometimes although things do not turn out as planned they turn out just fine with another plan. There are lots of people out there who planned on a singleton pregnancy and ended up with twins but I've never heard a one of them say they would give back one of the twins just because it wasn't what they had planned. Life changes and people change and you adjust along the way.

Now that we have that out of the way... Carly's anxiety issues have taken a turn for the worse. I am not talking about there being a monster in her closet or things like that. I am talking about being afraid to go over bridges in the car, having to check and recheck door and window locks, praying at bedtime that is becoming almost ritualistic...those types of things. This has been going on for awhile and it waxes and wanes but it is getting worse and is now affecting her school performance. Yes, I realize she is only in kindegarten but I believe these early years shape a child's view of themselves and problems not addressed now will become worse in the future. She is by far one of the smartest children I have ever met (and I do not just say that because she is mine.) I am proud that she is so smart but I really just want her to be able to be a kid. I want her to be happy and carefree, like a kid should be. Of all of the things I wanted to pass on to my child, this was not one of them. I had these same problems that began early in life also and I hate that she is following in my genetic footsteps. I take medication daily for it and am better as long as I stay on it. I was in the 7th grade when my parents sought help for me and I am hoping that by starting sooner with her that maybe it won't have to get so bad before it gets better. So please, pray for my Carly that we will find an answer for her tomorrow at her Dr's appointment. We are starting with our pediatrician and will go from there. She is excited about the appoitnment and says she hopes they can make her feel better and not worry so much, well that and the fact that she gets to miss school and have lunch with me and without her baby sister.
I do not know if the answer will be medication or therapy but whatever it is I am ready to get on with it. I have tried 800 times to start a new paragraph here but blogger is not cooperating so just pretend, K.
I have decided that I need to get my butt in gear and get off the couch so with the help of my lovely assistant (ok I don't really have an assistant but I like to dream) so really with the help of my sister found the perfect program for me. It is called "Couch to 5K" and it consists of a 9 week program which will suposedly take me from couch potato to 5K runner. I started yesterday and since I hadn't really run since, well, since forever (or more likely track in 8th grade) I am sore as hell today. That is why this post is so long, I am stuck in this chair. I commit to finishing this program and already have plans to run in the Turkey Trot with my friend Josie in Novemeber. I know that is way more than 9 weeks away but that will hopefully ensure I stick with this, lose weight, and get healthy.