On Wednesday Trinity had a hearing exam done to retest her since she referred on her left ear. She ended up referring again, but this time she did on both sides. They had us come back yesterday for another test that would be more accurate and tell us for sure what was going on. I know that this is going to be very confusing to all of you just as it is very confusing to us. The doctors and pretty much stumped as to what is going on with her hearing. She passes all the tests that tell them that she can hear, but she is not passing the test that sends the message to her brain on how to respond to what she is hearing. So pretty much what she hears is like speaking a foreign language to her (which we thought that was pretty normal for most 6 week old babies). They are going to send this test on to other doctors that specialize in these areas and to her surgeon that has dealt with a lot of spina bifida kids. So we should find out more on this next week and at that time we will update all of you with this info.
As for her back, it is not looking real good as you can see by the picture that we added on here. They thought that with putting the steri strips on this it would help bring the skin together and the wound would start healing from the inside to the outside. This is not the case and it is not healing and it is opening up even more. So, today at 5:15pm we are going to go and see a plastic surgeon that the neurosurgeon has referred us to. We are not real sure what to expect, but we are thinking that he will want to do another surgery.
Yesterday was not the best day for the Arthur family. We definitely received news that we were not expecting. We really were hoping that her back would heal on it's own and we would not have to face another surgery. We also did not expect to get the results we got on her hearing. We really just thought that she referred because of the fluid on her brain.
This is all very frustrating to hear and have to deal with. Just when we think things are getting better we have something new to deal with. We continue to be as strong as we can and lean on God for all our strength to get through all these difficult times. I (Miranda) am going to be real with you and tell you that sometimes there are days where it is hard to not be angry with our situation. It is so hard to watch your baby go through so many things and have to be in pain so many times. I just wonder when her pain is going to end and when she can start living a normal life as a baby. This is not poor Shannon and Miranda, it is poor Trinity. She has endured more then Shannon and I have combined. We ask for your continued prayers for Trinity. That God would touch her body and heal her. We also pray for the doctors that are seeing Trinity and that God would give them all the knowledge that they need to deal with Trinity's situation.
We are very blessed to have such wonderful people in our lives. Some of you know the Turnbull's and their situation with precious Stella. They have really showed Shannon and I unbelievable strength through the challenges that they face daily with Stella. Please continue to pray for Stella and that they would find a cure for her illness SMA. We were also blessed to meet Chris and Kati Pannecouck in the NICU. Their son Ben was in the room next to Trinity. Their son faces many challenges with eating and has been diagnosed with Cystic Fibrosis. They too have shown us strength as they face the daily challenges with Ben. Please keep Ben in your prayers as they continue to feed him and that he would be off of the TPN soon.
We truly appreciate all your thoughts and prayers. It brightens our day when we open up Trinity's blog and see the comments people have made!!
Love-The Arthur's
9 comments:
Shannon and Miranda,
You guys can be real at any time with any of us and know that noone judges you for the anger/fear that you show. We have so many of those days too. I was told my an SMA mom one time that she never gets down about SMA and I thought, "Ok, she's wonderwoman cuz that's just crazy." It's so hard to watch this little girl that you brought into this world go through the challenges that she is but you are giving her lots of love and she knows that with that, you will help her through it. I love it when Stella looks at me when she's uncertain about a blood draw and I just tell her it's ok and she may cry but she just keeps looking at me knowing that I'm still there and I'm not going to leave her alone . . . much like God is never going to leave either of you alone. When you feel that "it's never going to end" and "life will never be the same", remember that God didn't promise us that it would be easy but He did promise that he would never leave us or forsake us. Hang in there and know that I really do understand and appreciate you both for your courage (even though you don't want to be courageous anymore). We WILL get through, even on the days where you literally have to focus on getting through each minute because you just don't know how you will possibly make it through. It's not fair unfortunately but know that so many are pulling for you!
Lots of hugs and love from all of us in Iowa,
Sarah, Travis, Treyton and Stella* www.caringbridge.org/visit/stellaturnbullturnbull
wow shannon and miranda...i enjoy comin to trinity's page and readin up on her....its become part of my daily ritual on the computer....I have been prayin for you guys ever since lil trinity was born and i realize at times it seems really hard but God will pull you all through.... I hope that find comfort in this bec. i find it so true bout God...
"May your unfailing love be my comfort, according to your promise to your servant" ~Psalms 119:76
I love you guys and have been prayin for you!
Tiffany Sjaardema
Shannon & Miranda,
I continue to pray for Trinity as well as for both of you and little Aubree. I know these are extremely difficult times for all of you. I won't pretend to know exactly what you must be feeling, but my heart goes out to your entire family. I found a bit of information on the web about healing difficult wounds. There is a wound care center at the Beaumont Hospital campus. The web address is www.beaumonthospitals.com/woundcare
Also, I read about a particular method to help difficult wounds heal called vacuum assisted closure. I just wanted to share that with you if it's an option. I believe God will heal Trinity with a little help from good specialists. With something like this, it can't hurt to get information from a few sources. Every little bit might help.
Love and prayers,
Kelly Kelley
Miranda,
I understand your frustation! You should not feel bad about voicing your frustation. Anyone who is going thru what you and Shannon are, would feel the same way.
I too, was wondering about the "Wound Vac System". It is a Negative Pressure Wound Therapy that promotes healing of chronic open wounds. We use the system alot for open surgical wounds. We see amazing results. I just wonder about it for an infant and with the open wound being that close to the spine. I called my rep here in Iowa just a few minutes ago and she said they had used it before on an infant at Blank Hospital who was born with all of her intestines on the outside of her body. She said she had never seen it on a back wound of an infant. She said that they just came out with a new vac system that only applies a pressure of 25 which most of the ones we use have a pressure of 125 or 150. The best thing she said was to ask your doctor about it to see if he was even comfortable putting it on that close to the spine. Ultimately the doctor would have to decide if it was safe.
We want you to know that all of you are in our prayers daily. You can see from the pictures how irritated poor Trinity's skin is on her back. I feel so bad for her.
Hopefully the doctor will have some good suggestions for wound healing.
Thank you for your updates they really are helpful.
Kelly, Sammi, Brooke and Dallas
HI Miranda
I just wanted to send you a note of encouragment and let you know that our family is praying for yours. It is wonderrful to pray specifically for you as I recognize many of the emotions. The plastic surgeon should be a great help as ours was for Whitney. If you need a referal in GR let us know. Isn't it a relief that we have a God who is The Healer, The Comforter...
Prayerfully, Susan Nelson
www.whitneynelson.blogspot.com
Just wondering how your appointment went last week . . . thinking and praying for your strength to get through the moment and each day!
Love,
Sarah TUrnbull
Miranda and Shannon,
YOUR STRENGTH IS SO AMAZING.
I truely believe that things happen for a reason and I know this is challenging for you both but you are such amazing people and your faith has overwhelmed and encouraged me. You have been dealt a situation that will only make you stronger not only as a mommy and daddy but as a family. I am praying for Trinity she is such a blessing and I am praying for you, Shannon and Aubree as well. I wish there was an answer or quick fix for all the pain and struggles. Be strong and always remember it is okay to angry or upset just continue believing. We miss you and are praying for you.
Love,
Amanda, Stephan and Paige
Miranda and Shannon,
Your strength and courage continues to amaze me everyday! You will get through this and Trinity will grow into a truly amazing girl due to her parents strength and determination. I will keep you in my thougths and prayers! All our love!
Carol, Chuck, Camden, and Carter
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