Wednesday, April 23, 2008
Yesterday we seen the plastic surgeon for a checkup. She no longer has the drainage tube, what a relief, and he thought that the incision was looking really good. He wants to see her in another week and then if it is still closed we should be in the clear. We are very pleased with the way it looks and can't tell you how happy it makes us that this could be the last back surgery for Trinity. We will probably have to look at a surgery down the road to make the scar look better, but that is something we will worry about later.
We still have not heard anything on her hearing. We have calls into the doctors and they are working on it. It is amazing how if we wouldn't have called them about this they just would have ignored it and done nothing about it.
We continue to do the catheter once a day and are getting anywhere from 15-40cc. We will continue to do this until we see the urologist in a couple months.
Overall Trinity is doing really good and for once we feel like she is down the road to recovery. We still need to avoid her being on her back for another week or two until the incision has healed.
Today we met with Early On, a program in the school district that will help Trinity with her PT, OT, and any other special education she might need. This is free of charge up to the age of three. We have heard nothing but good things about the Rochester Schools and we are excited to get the opportunity to have them work with Trinity.
We have been enjoying the beautiful weather we have been having, by going to the park. Aubree loves to go on the slides and show her mom and dad what a BIG girl she is!! Our plan is to come to Iowa in a couple weeks as long as Trinity is doing okay and we get the approval from the surgeons.
Can't wait to see everyone in a couple weeks!! Love-Shannon, Miranda, Aubree, and Trinity
Saturday, April 19, 2008
We wanted to share a picture of Trinity's incision and her drainage tube. Today was the first day we removed the gauze and replaced it with new. It really is looking pretty good. The incision is pretty hard due to the glue, hopefully that will help keep it together and not let any stool get in there and cause infection. Her drainage has been good, it is a normal color and we empty it twice a day getting about 5cc each time. We are still doing the catheter about three times a day and getting about 35cc. She's still in some pain, but we both think it is the drainage tube that is hurting her. When we pick her up we grab her by the butt to avoid the back and sometimes the pressure of that causes her to squirm. I can't imagine what that must feel like. Hopefully she can have that removed in a couple weeks.
On Wednesday and Thursday night she slept through the night without waking up for a feeding. Last night she woke up once for about 2 hours, but I think she was in some pain and just wanted her mommy!!
Shannon let me have a night to myself last night with some girls from my church. I can not tell you how nice it was to get out of the house and enjoy myself. We really have some great people in this area that have supported us during this time and we feel so blessed to have them in our lives.
We are still crossing our fingers that the girls and I will be back in Iowa in a couple weeks for graduation. So far the doctors think that Trinity will be fine as long has we stop a couple times to get her out of her carseat. Please pray that things continue to heal and that the wound stays closed. Also, pray for Trinity's pain and that she would be relieved of that.
Thank you again for all your thoughts and prayers. It is so nice to read your posts and emails!!
Wednesday, April 16, 2008
The day started very early this morning for the Arthur family. Trinity couldn't eat past midnight and was up at three this morning. Miranda was up for the first hour with Trinity and before we knew it everyone else was awake. Aubree was trying just as much as Miranda and I to calm the big eater, but time was the only fix for her hunger. After few hours of voicing her opinion of no food Trinity calmed down.
We dropped Aubree off at Laura and Monte McClelland's house at a little before six. This is a couple that God has blessed us to be acquainted with and they have helped out very very much. By eight Trinity was headed in for surgery. The surgery was performed by a plastic surgeon, and our neurosurgeon was there to consult and assist. Dr Gilmer the neurosurgeon was the first to greet us and let us know that the plastic surgeon was finishing up, and from her perspective everything was looking good. The existing opening she said was infection free, and looked good. About a half an hour later the plastic surgeon came to talk us through the surgery. He said that he sewed the opening in layers, three in total. After sewing the opening shut he glued it shut. He also ran a drainage tube from the closure to the top of her left butt cheek. With the glue sealing off the opening the drainage would need a way to escape and this would take care of it. He made it sound like this was a fairly common practice for him. The glue will stay covering the now closed area for about two weeks and the drainage tube will be in about the same amount of time.
By noon Miranda and I were home. It is quite apparent to us that Trinity was in a considerable amount of pain. The doctor prescribed us Tylenol with codeine. After giving her a dose of this it seemed to help. We are back to doing a catheter every four hours. The first time we did it today we got about 80cc. Hopefully after about 3 days or so she will starting urinating again on her own. All and all things are going pretty well, and we once again have a lot to be thankful for. The picture shows the drainage tube, and the catheter that we are doing every four hours. Thanks again for all the thoughts and prayers!
Tuesday, April 15, 2008
Just wanted to update all of you and let you know that Trinity is going to have surgery tomorrow at 8:00 am. We really feel like this is necessary and the neurosurgeon feels the same way. The plastic surgeon will be doing the surgery and the neurosurgeon will consult. This should just be an outpatient surgery and she will come home with us tomorrow. Please pray that the surgery is a success and pray for the doctors and nurses. We also would ask that you would pray that the insurance company will allow this doctor to be covered under our PPO. Right now he is not a provider and is not in our network. This means more money out of our pocket. We will try and appeal this, but there are no guarantees. We feel like this surgery is necessary and he is the only plastic surgeon available to do it, otherwise we will have to wait a couple weeks.
Thank you again for your thoughts and prayers. We will make sure to update you after the surgery.
Thank you again for your thoughts and prayers. We will make sure to update you after the surgery.
Monday, April 14, 2008
I would love to report something new and good, but unfortunately I don't have much to tell. We met with the plastic surgeon again on Thursday last week and he gave us some options, we can either do surgery again or let it heal on it's own. This is a tough decision for us and something that we are praying for guidance on what is the best thing for Trinity. On Friday when I went to clean it I thought that it had looked the best that I have seen it since it has opened up. If we let it heal on it's own she will eventually need plastic surgery done to make the scar look better so that is something to think about also. We feel like Trinity has been through enough in the past two months and we hate to put her through anymore surgeries. Please pray for Shannon and I and that we would listen to what God wants and not what we want.
We have not heard anything from the audiologist. We will probably call this week and see what they say. We will be sure to update everyone.
Wednesday, April 9, 2008
Trinity had an appointment with the plastic surgeon on Friday. He wants to leave her back alone for a week or two and see if it starts to granulate and heal on it's own. He really wants to avoid surgery if at all possible so her little body don't have to go through anymore trauma. We are changing the dressing twice a day and using an ointment that is used for wound care. When cleaning the open area it makes it very difficult because of the way it looks and also wondering if we might be hurting her when cleaning it. It is very hard as her parents knowing that the area is open and wondering if it is ever going to heal. I can't imagine having an area like that on my body and not be in pain. We go back to see the plastic surgeon tomorrow. We are hoping that it has improved and maybe we are headed down the path to recovery for Trinity. There is still the possibility for surgery if this area don't start healing on it's own or if it starts to leak any fluid from the spine.
As for her hearing, we still have not heard anything from the doctors. Hopefully we will get some news by the end of the week. The neurosurgeon thinks that it might be something called Chiari II Malformation, which is common with spina bifida. She wanted to review the tests that were done on Trinity and see if it could be a possibility, if she thinks it is she might order a MRI. This is usually corrected with surgery. Please pray that the doctors would discover what is going on and we can work on correcting the problem.
Aubree is back at home with her mom and dad. She had a great time in Iowa with all her family and friends. Thank you to everyone that helped with her stay in Iowa and made it so much easier on Shannon and I while Trinity was in the hospital.
Co-Line Welding is sponsoring a benefit for Trinity on June 7th. They will start with their annual Poker Run that will then end at Old Setts for a Benefit Hog Roast with Bryan De Jong’s & Chris Rumer’s band playing. This means a lot to Shannon and I and our family that the Brand's thought of Trinity for the proceeds to go to.
Thanks again to everyone for all your thoughts, phone calls, gifts, and prayers. We appreciate all of them and are very blessed to have such great friends and family!
Friday, April 4, 2008
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!!