Monday, February 8, 2010

hospital update


Well we are still here at Kosairs children's hospital. It looks like our neuro wants to keep us here until at least Tuesday.


Emily has been acting much different. Over the past few days she has been LOADED down with so much medicine that she has absolutely no muscle tone left and has no appetite.

I nurse her as often as I can but due to stress, not eating and not sleeping my milk supply is dwindling and she just straight up refused to drink the formula. On top of all the she won't eat baby food any longer. I am not sure if it is because of her lack of appetite or the lack of muscle tone to swallow well. Either way if you put medicine or a spoon of food in her mouth she gags and won't swallow it.


She has given us a few scares where they thought she was status, which to my understanding is where they seize for so long they stay in a constant seizure. Both times the eeg showed she was not. She is now getting a 23 hour video eeg and so far, over 12 hours into it, she has had over 14 seizures. One very long one lasted over 30 minutes but we finally got that stopped.

my baby with her eeg monitors on. they wrap her head so the leads don't fall off.

They have also changed her meds around. Every med has its own horrible side effect. I just pray that this evening when her neuro gets here he will have some more answers for us.

This time around in the hospital has been harder on us. Joe and I are not sleeping much at all. Her seizures are lasting longer and the meds don't seem to help like the first visit we had.

I want to share some feelings I had while setting in the ER for 8 hours yesterday.

As Joe and I sat there with our beautiful baby I watched as parents came and went through the ER doors. Some had a cold, others had more severe issues like rsv but one little girl across the hall from us had a UTI. I watched this family, well kept, mom was 7-8 months pregnant daddy helped his little girl to the bathroom, she skipped back to her room. They were nervous when the nurse came in and said its a really bad uti, we have to give her very strong antibiotics. The nurse got her prescription and some handouts for the cute little family and they went on their way.

I couldn't help but feel a little envious because I know that the nurse is not going to walk in and hand us a prescription and a handout that will fix my little angel. At this point I am not sure if I will ever have more children (waiting on genetics testing). I don't know if Emily will ever skip with her daddy. Our future on earth is so uncertain with Emily and its just not fair! I am mad, hurt, disappointed, sad, crushed, devastated, let down, in despair, numb, and above all THANKFUL!

I may sound crazy to some but I could not be more thankful for Emily. She made me a mommy. She needs me, loves me, and when she looks at me purposefully and smiles it takes all that pain and anger away.

Emily may never be a "normal" baby and that really hard to deal with. I am grieving the baby that I dreamt of having. At the same time I am rejoicing in the life that I do have with her.

I am not going to lie, this life is hard. I am so physically and emotionally tired, no change that to exhausted, all of the time.

Between watching around the clock for seizure activity, making sure her meds are given at the right time and right dose, doctor appts, physical and occupational therapy, stretching, feeding her takes a lot longer and so does bathing her, I have to remember that she is still a baby. She still needs to have play time and get out in the world and experience life. I am trying my hardest to do all of those things. It is just so hard.

I don't want to offend anyone with what I am about to say. I know raising children is hard. Obviously I don't have teenagers or more than one but tonight when your toddler is screaming because he/she wants chips for dinner instead of the wonderful meal you slaved over the stove to make them, don't get mad, be thankful that they can eat what they want and can tell you.

When your teen storms off after you two had an argument and you just want to punch a hole in the wall and ship them to someone elses house for the rest of puberty, stop and look at the blessing you have and the adult they will shortly be.

Some people may complain because they don't have enough "me" time or the house is mess because the kids have been playing or you have to take the kids to the doctor for a runny nose and cough for the 3rd time this month. Just remember to stop and be thankful for your kids and their health. I know a lot of people take it for granted. I know Joe and I did in the beginning.
Cherish every moment you have and every I love you they say.

Tonight as you say your prayers thank God for your children and their health.

Lord, I am so thankful for my Emily. You gave us a beautiful princess to love. I am a better person because of her. I know you have the power to heal her, I am calling on You. I cry out to you in my pain. More than anything I want her well. I know as much as I love Emily You love her more. Help us to understand why this is happening. Let me be the mommy she always needs. We love you so much Jesus! Thank you


7 comments:

  1. So many of us are asking God the same thing for you - "Why?" - but we hold on knowing He has a mighty plan through Emily, & through you & Joe... & you are such an amazing Mommy!!! Yes, Emily may not be like the other kids, but you are not like all the moms out there either! You have such a strength that just astonishes me & makes me proud to be your friend. Hang in there friend! Keep relying on God & you're ALL going to get through each & every day, one breath at a time! Love you!!!

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  2. Such a wonderful post dear daughter... I am so very proud of the mommy you are. And while little Emily may not be the daughter you envisioned... she is the daughter of your heart... while she may not grow to be like other children,she will grow to be God's child, and while right now is such a struggle, you are blessed to have the "right now".... and I believe that God is so very proud of you and Joe for being such wonderful parents to HIS little princess! We love you all very much....

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  3. I love your post. My prayer is that God will continue to give you and Joe what you need to be the parents he made you to be. Like Rebecca, you both amaze me. I can only imagine the strength that is required to keep going when most days I imagine you just don't have it. God is faithful and keeps supplying. All three of you are in my prayers daily.

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  4. I simply cannot even begin to comprehend what you two are going through. To have a child at all is such a precious thing. To have a child that is going through such pain is just unbearable. You and Joe have been such an inspiration for many who know what you're going through. Your growth to God may have not been in the manner you would have liked, but your closeness to Him is priceless. KNOW that you three are loved, prayed for, and have support. Love you! Praying for you! Grace & Peace to you...

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  5. I pray for Emily every night I lie down to sleep. Your little angel is beautiful in every way, and my heart goes out to her and your family. I've been following your blog for several days now, got tired of waiting for slower updates to come from George, and I must say, that while my heart aches for anybody this young having to be subjected to such trial and tribulation, much less a baby I have held in my arms, and parents I have met, you have really taught me to appreciate my situation so much more. My pregnancy obviously wasn't planned, and because of this, I found myself oftentimes annoyed at the inconvenience, either conflicting with high school or college plans, but once I began reading up on Emily, and how you sacrificed everything, everything to be at your child's side, I recognized that I had so much to be thankful for. An uneventful pregnancy, the ability to continue to do things for myself, but more than anything, a healthy baby without any intervention on my part. You've taught me to appreciate my son, and we're both so grateful. Good luck, and i'll be with the three of you in spirit every step of the way.

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  6. I pray for Emily every night I lie down to sleep. Your little angel is beautiful in every way, and my heart goes out to her and your family. I've been following your blog for several days now, got tired of waiting for slower updates to come from George, and I must say, that while my heart aches for anybody this young having to be subjected to such trial and tribulation, much less a baby I have held in my arms, and parents I have met, you have really taught me to appreciate my situation so much more. My pregnancy obviously wasn't planned, and because of this, I found myself oftentimes annoyed at the inconvenience, either conflicting with high school or college plans, but once I began reading up on Emily, and how you sacrificed everything, everything to be at your child's side, I recognized that I had so much to be thankful for. An uneventful pregnancy, the ability to continue to do things for myself, but more than anything, a healthy baby without any intervention on my part. You've taught me to appreciate my son, and we're both so grateful. Good luck, and i'll be with the three of you in spirit every step of the way.

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  7. Miranda you a very sweet. Thanks for the prayers! First I don't know what it is like to be a teen-mom I am sure it must be hard and stressful. You have a head start though by understanding the sacrifice you will be making to be the best mom you can be. I know you will raise this little boy the best you know how and you will love him unconditionaly. You will be a great mom. I am always here if you need any advise or just want to talk. :)

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