No Words
I am afraid there are no words to describe to you what today feels like. On Friday against my better judgement I handed over a happy, loving, playful baby. She returned to me screaming and has not stopped. They tell me nothing is wrong. They can find nothing, but she continues to not cry but SCREAM. My heart is broken for her. We are both exhausted and I am having trouble trying to hold it together today. Before today ends I may join her and we may both just sit and hold each other as we scream until we can scream no more. I just don't have words. I guess it is possible that she had a major change in her personality while under anesthesia and we may just have to learn to love the screaming, but I think there is more to it than that. She screams so hard and so loud she can't breathe. Perhaps she has just finally had enough of this place and she has decided to let them all know. I really don't have any words so I will go back to standing by her crib listening to her scream while I cry.
posted by Ashley @ 12:28 PM
22 Comments:
I hate it that you are going through this today. THERE MUST BE SOMETHING>. A mother's instinct is never wrong. That is just strange. I so hope God will show those doctors something today. They need to listen to her! She is trying to tell them something. I will Pray for a better day and I will Pray for God to show what it is that is causing her so much pain.
Im praying hard for you and Ashley today.
Trish ~
I agree with the first comment made by Krista. It sounds like something may have been overlooked somewhere. I am praying for wisdom and insight today and for Ashley's comfort first and foremost. As terrible as this may sound to you, take some mini-breaks if needed. Sometimes it's easier to gain our clarity in a situation like this when we've had a moment of quiet to pray and gather ourselves.
Trish,
I will be praying for you and Ashley today. It is so hard to watch them scream when you have no idea what's wrong with them. When we were new parents and brought our first baby home she cried/screamed for four days straight until she was horse. Thankfully nothing was wrong but boy were those four days Looooong.
Trish,
Hopefully they will find something that relieves the pain and is simple to take care of. I was so excited by all the news yeterday of her oxygen levels and eating and such.
Perhaps the real problem is that she wants some recognition for her half-birthday! Happy 1/2 Birthday Ash. Sorry I forgot to celebrate it on Sunday, I knew it was coming but forgot to wish you a happy day!
Marlain in Texas
Praying...
((HUGS)) I'm keeping you and Ashley in my prayers for a more peaceful afternoon and night.
I'm praying for Ashley and you.
We're still praying for wisdom and direction on both your's and the doctor's part. This, too, shall pass. Keep the faith!
Still praying in Alabama! Trish, stay strong and hugs all the way to Omaha!
May God give you the strength you need to handle today.
I wish I could take some of that pain away from you both. I am so sorry. Praying hard...for answers.
Trish, I'm so sorry you are dealing with such a hard day. I, like the others who have posted comments, am praying for wisdom for all involved to know the right path to take.
I'm so sorry to hear how rough things are. Continuing to pray...
You are all in our prayers. God will make a way when there seems to be no way!
Because He lives, we can face tomorrow.
I'm not trying to be nosey or anything, but I think God just had me read back before her surgery on Friday for maybe a possible answer. I was trying to read back to give you encouragement from your own writings and I landed on the part in This baby girl 2/1/07 Today was not only filled with lots of play, but it also included lots of work. Ash had to work very hard with her therapist today and it was painful. This was her first time being strapped into the pediatric stander. It looks scary. It is scary. She cried from the discomfort and I wanted to cry along with her. I hated to see her struggle so much, but it is something that must be done. She reached for me the entire time and cried "Mommm" over and over again hoping that I would rescue her. I make her work hard because I love her, but it breaks my heart. If my Ashley has any chance at ever standing or walking we must make her endure the therapy and push through the pain. It is very frightening to have her place her body weight on her feet and legs. Her bones are very fragile and brittle from the extended use of TPN and strong doses of steroids that she lives on. One of our little transplant friends has actually fractured his leg and he doesn't even crawl or walk yet. We must take it very slow and it will take many, many painful days to strengthen her bones and muscles so that she might one day be able to walk. Is there a possibility that something is wrong with her legs from standing on this day. I just felt like God gave me this, I may be all wrong but if I could do anything to help you out with what you are going through I would love too. Just a thought, and it may be a passing thought. You are a wonderful person Trish, hang in there and keep looking up!
Continuing to hold Ashley and you in my heart and prayer!
Maybe Grandma Cathy could be on to something. It's worth mentioning to her doctors. Praying!
Trish-
I have followed Ashley's story for weeks now. I found it through another blog, of another blog. I sat at work for 5 hours one day, reading story, and remaining in awe of the family you have been blessed with, and the mother which they have been given. I believe that Grandma Cathy may be correct in something here- but as I think about it now..I think the CT this morning would have shown fractures or something, right?? Fractures in her hips, legs..anything. It still may be worth a shot mentioning...that since the therapy- things haven't been as progressive as they had. =)
We are sending BABY ASHLEY many get well wishes filled with love. We have and will continue to pray for your family daily, that God will direct the doctors in providing the BEST care for your little angel. I know that it must be very difficult to be away from the rest of your family, but in the end she is so worth it! God will bless you family! Take Care!
The Waddle Family
Oklahoma City, Oklahoma
I know you will get a lot of medical advice from this post. Please follow your mothering instincts and please do not take "we do not know" for an answer from the doctors. She is in extreme pain to be screaming like that. I do not think c-scans can see brittle or broken bones. I do not understand why this happened after her surgery except that possibly something could have broken then? She is your baby and she needs your help in solving this. Please try everything in your power to get an answer from someone. I will be praying so hard for her today. It must pain you so much to see her like this and hear her like this. I am so sorry you have to go through this. You are such a strong mommy. I love to see the love you have for her through this blog. Please God help this little baby get well!
Oh, Trish, I am so sorry. I wish there was some comfort I could offer, or some practical way I could help, but I'm too far away to do anything but pray hard for your sweet girl! That baby is so blessed to have a mama with such fierce love for her--I hope tomorrow brings answers and a solution.
And congratulations that the feeds are going well! That's wonderful :)
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