Today we went to KC to clinic. Everything went well. We got to see Becky (one of our favorite CMH nurses). We then went to clinic. Isabella slept the entire time. She was awake for the entire van ride but as soon as we got to the hospital, she went to sleep. She got 6 shots!! POOR BABY. She did wake up for that, but went right back to sleep. They cut back her calorie intake because she is gaining too much weight. She is almost 19 pounds. Everything looked good except for her head growth. Her head is growing , but not enough for the Dr's. They fear that since she is not growing like she should, her head I mean, that she may have suffered more brain damage than we know. The Dr. is unsure of how much function Bella will ever have. She talked like it could be as bad as never progressing much more than she is now. She said there is no really good way to assess brain function. So it will just take time to find out what we are dealing with. So even though this is something I already knew, it felt like I was hearing it for the first time. I was in shock. Like how could they actually think that my little Bella was going to be mentally handicapped. And not just a little mentally handicapped, but severely??? What?? this can't be happening. I don't think I can take much more news like this. It seems like it is always one thing after another. I just want to know RIGHT NOW!!! See I am loosing my virtue of patience. I feel like we play the waiting game everyday. We never know if she is going to crash again, we don't know how severe her brain injury is and the list goes on and on and with other what ifs that I am even too scared to write about. So when does the waiting stop. When do I feel like okay this is it, she is going to be fine. I know none of us is guaranteed tomorrow, but I feel like I am forced to think about it everyday. It is a real fear for us. So anyways back to what the Dr. said. I have to disagree with her head size. Yeah, it is small. Okay so she does not measure on the growth curve. Well I think I know why. For one she was born with a really small head. 14 inches to be exact. Well that is the size of an orange, or somewhere around there. Then it is said that when a baby is in a coma (drug induced or not) they don't have much brain growth. Well Bella has been in a coma for a big portion of her life. And then yeah she did suffer some brain damage, but the MRI only reflected it to be the part of the brain that effects her hearing and sight. So I need your help. I want some opinions here. Yes I may be on of Isabella's nurses but I am also her mom. I don't know if I always see things for what they really are. I think when I look at her, I see a perfect precious little baby that I love with all of my heart. I know she is really behind but why wouldn't she be. Well I just don't know anymore if I am seeing that much progression with her, or I am fooling myself into believing she is getting better. I know she is getting stronger. So please for those of you who follow the blog and see pics of her and for those of you who see her in person tell me what you think. Is she getting better cognitively or am I dreaming. I don't think I can see the real picture anymore. I just wonder if I am seeing what I want to see. But don't get me wrong, I love Bella and in all retrospect, none of this is really that important. She lived!! She made it through more than anyone could ever ask a person to go through. So regardless of the outcome of her brain, she is a special little girl. I hope she changes the world. I don't want to seem like I am not thankful, because I am. Trust me, I thank God everyday for what I have. I just love her so much and I hate to think that she may never go to school or the prom or get married. I know I know. I don't know why I am doing this to myself, but I need to let this all out. I try to make it all rainbows and sunshine all of the time, but I can't. This is real and these are my true feelings. I am scared to death!! I am scared of what our future holds and I am scared of how to deal with what God has in store for me next. I know he will give me the strength and the courage to face all of my trials to come. I know he has a purpose for all things in life. So I am going to stop rambling and go hold my precious little Bella Boo. Thank you all for reading this. This was not intended to be this emotional but as I said I just need to let it all out once in awhile or I might just go CRAZY!!!
With Love
Okay I have an addition to this post:
I published it and then I decided to go back and read through all of Bella's old blogs. Now I can say without a doubt that I know Isabella has shown improvement since August. It may not be major stuff, but little stuff here and there. It is enough to give me hope. So also thank you Hillary and Amy for your words. Sometimes I forget how God has brought such special people into our lives just since having Bella. Also not to mention I would have never started the ministry. Also I don't know when I would have taken the time to have a personal walk with Jesus Christ. As I said before, I don't know what God has planned for me or Bella or anything for that matter, but I am going to embrace each moment. I think it may be easier said than done but I am going to try.
It is amazing how one can feel better just by letting it all out once in awhile.
11 comments:
head doesn't look small to me- but what do I know? So they said she'd die- she didn't...so now they say she's handicapped- who say they know? Megan, you know as well as I do that no one knows anything- God is our savior and our provider- and only he knows. We both also know that no matter what we really want- only he knows what we truly need...so it has to be good enough for us. It's all we're going to get. Bella is the same child now as before you took her for her appointment- just because they told you something about her doesn't make her a different baby than she was five minutes before they said it. Don't get caught up in labels. Maybe the reason you see changes in her is because you're the one who's with her to see them. You can't loose hope, Megan- she needs you to have it. I love you...thinking of you all the time.
Hillary
Your thoughts are normal. I go through the same thing with Kaden, wondering if he is going to get married, hoping that he will have a wonderful school experience, praying that people continue to be kind to him as he gets older and that God will protect him from harm (emotionally and physically). I so understand what you are going through. As of brain function, the doctors said the same thing about Kaden, that they don't know what damage has been done. They too sent Kaden home, stating that he is the sickest baby that they have ever sent home and that they did not expect him to live long past his first year. He has proven them wrong time and time again (and I thank God for the strength he has given Kaden and Bella everyday). When I read Bella's blog I see Kaden all over again. She is so amazingly strong and lucky for her she has you as a mommy who is there to teach her and help her develop. I think that you are a wonderful mother and as long as you continue to let her live the life she has been so blessed to be born into she will continue to grow as a strong person and continue to prove the doctors wrong. The things you have seen with Bella are real. You are with her and you are fortunate enough to witness a miracle everyday. I just want you to know that I always think of you and Bella and continue to pray for you all. Take care and be VERY proud of yourself for doing such a wonderful job taking care of Bella. Sweet dreams to you all, Amy
Oh Megan,
I'm sorry for what the dr's said to you guys. I think a lot of the time they are trying to prepare for the worst possible situation, but they rarely spend enough time with a kid to have a real neurological picture. Bella has always been on her own growth curve, but she continues to grow, which is what is important. And yes, we know she had some damage in her brain, but babies have such plasticity that I believe in my heart that with the help of God and such a strong family she is going to thrive and be the happiest baby. No one knows, and don't let them try to say what she will or will not do. Keep the faith sister! We're here for you!
Can't wait to see you all.
Love, Sarah
Megan, I'm so sorry to hear that you are frustrated, but I totally agree with Hillary and Amy. The results you have seen with her are real, and you need to continue to have hope that she will further surpass all that is/isn't expected from her. She has already proved the Drs. wrong so many times. And I truly believe that she is here for a very special reason. God has entrusted her here on earth with you and Matt for a reason, and he knows what he has planned for you and for Bella. I know exactly how you feel though, b/c I to am very impatient and want to know God's plan for my future NOW, and not have to wait, but we have to trust and believe that he knows what he is doing! She is beautiful, and is growing and is doing great, and that is what you have to focus on, and although it's hard just take it day by day. I love you and I'm so glad I got to see you guys today. It keeps me going for awhile after I get to see her. Take care, and email me that picture of us from today when you get the chance. Hugs and kisses.
Megan, I'm so sorry to hear that you are frustrated, but I totally agree with Hillary and Amy. The results you have seen with her are real, and you need to continue to have hope that she will further surpass all that is/isn't expected from her. She has already proved the Drs. wrong so many times. And I truly believe that she is here for a very special reason. God has entrusted her here on earth with you and Matt for a reason, and he knows what he has planned for you and for Bella. I know exactly how you feel though, b/c I to am very impatient and want to know God's plan for my future NOW, and not have to wait, but we have to trust and believe that he knows what he is doing! She is beautiful, and is growing and is doing great, and that is what you have to focus on, and although it's hard just take it day by day. I love you and I'm so glad I got to see you guys today. It keeps me going for awhile after I get to see her. Take care, and email me that picture of us from today when you get the chance. Hugs and kisses.
Oh Megan! I have to agree with the girls as well, her head looks perfect to me. The doctors say a lot of things and we have all been there, heard that. Look at all that Bella has accomplished. She is just taking her time and that is ok, time IS on your side. Each day she seems to do little things that show improvement. Ok maybe she is not where she "should be" on the growth charts who cares! Those doctor focus to much on those charts (I think)...
I don't want to repeat what the girls have said, but she has already done way more than the doctors said she'd be capable of. Miracles Happen, I know you are a believer, so don't give up and give into the doctors now! She can and will continue to accomplish and do great things in her lifetime.
My heart is aching for you right now. I want nothing more than for you guys to experience all with Bella that you have with Maddy and Abby. Stay focused on the positive, she can sense your questioning things. I know you can and will help her prove those silly doctors wrong:)
Sorry for the rambling...it's late!
Can't wait to hug you on saturday!
Love and prayers always!
Megan,
I think that these thoughts are normal to have. I can see real progress in the photos that you have posted. I don't think that her head looks too small at all. I think that we as the medical communitee get caught up in what we think we know and how it will turn out based on studies. But the truth is we don't know at all. The only person that knows is god and all of this is in his hands as hard as that is sometimes. You loved and charished Bella just as much before and after her appt. The problem is they don't see Bella everyday and everynight like you all do. I say it all the time at work, the families know best. They know how there babies act and how they are at home in there home enviroment. You are one of the best parents I have seen in a long time. She is making progress, progress that they said she would never do.
I love and can't wait to see you.
Kim Palmer
My child of mine you have forgotten how small Abbys head was . I still am standing on what God spoke to my heart when this trip first started. God has called Bella for his glory and his honor . She will be all he needs her to be . He uses her every day to speak about his son , so what those drs have been wrong most of the time . I see changes all the time . Like you said it is her down time right now and they do not see her enough to make a call. I love you and I am very glad I have you and Matt for chilren Love Mom
Megan, I too have the same thoughts about my son..will he do things, will he live to be old and gray. I think anyone that has had a child "normal" or not "normal" asks the same questions. I still go through the emotions and they have told me (they being families that have been there) it is normal and will slowly become a thing of the past. I know the guilt we moms put ourselves through because we cannot fix or make things better on our own. We feel like we need to be able to fix it, make it better. Bella is doing great things. She was in the jump thing the other day. she comes off the vent now and could be coming off completely soon. The doctors are doctors--we were given worse cases all the time. All the statistics of Downs children, all their problems they have or could have. Tucker is Tucker and takes his time....but really, couldnt we all learn something from our children about taking time. Look how much longer we get to hold our babies, I still get to rock my 2 year old to sleep. How many parents can say that....just us with special, take your time, smell the flowers, enjoy life a little longer, kiddos. I absolutley LOVE that about my son. Hang in there. You do not see "imaginary" things going on with Bella, she is doing more and more and with your in tune spirit, I think you know more than the doctors.
Oh, Megan and Matt,
You two are the greatest parents. Yes, Isabella is making wonderful progress. We want to put our arms around you, filled with love, and let you know: God is never going to forsake you. The enemy of our souls is the "father of lies". He would beat you down and discourage you. But, your Heavenly Father, loves you all beyond all comprehension. He IS with you and your precious family. He is the Miracle Worker, and He is not finished with you yet. We pray HIS Peace floods all your souls and fills your home. May you actually feel His wonderful blessings in everything you do.
Our love and prayers,
Aunt Judy & Uncle Paul
Hey Megan & Matt
As the 11th person to post a comment, I have nothing new to add. "Bella is the same child now as before you took her for her appointment." That is so true. Bella's head is "too" small, Hannah's head is "too" big. Too too too. But really, no one has a crystal ball.
I've wondered the same things that you & others have mentioned: will Hannah do any of the "normal" things? How badly deformed is her brain, really? Then I read where another Dandy-Walker child's brain had begun to repair itself.
So we can waste our days wondering and worrying, or we can take a deep breath and remember that we really don't have any control--never have, never will--but Someone else does.
I'm glad you let it all hang out. We all have days (weeks, more???) like that and it helps to know I'm not the only one.
I love you guys!
Angela
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