Monday, December 22, 2008

10 Months Old

As we near the holiday season we wanted to take some time to reflect over the last 10 months and the appreciation we feel for all our family and friends.

Ten months ago yesterday the Lord blessed us with a beautiful baby girl. When she arrived we had no idea the things we would face and the decisions we would have to make. Trinity has been such a "Joy" not only to our lives, but to many others!

When I think of the frustration I feel when we have to face yet another surgery I think of our friends the Timmerman's. As they celebrate Christmas this year they are also suffering the loss of their little boy Luke, that was stillborn a couple days before Trinity was born. My heart goes out to them during these holidays. God brought Liz and I together during our NST and I thank God for that. She has shown me so much strength and courage and I hope I can be half the woman she is. Even though Luke and Trinity never met, I know that he is looking down on her and is watching over her everyday and every trial that she faces. There is nothing harder then losing a child, and even though I can't relate with this term, I can only sympathize with the mothers and fathers that have. So to all of you that are celebrating Christmas this year and missing your loved ones, my heart goes out to you and your family. I pray that you feel a sense of "Peace" from the Lord and know that the ones that have passed on are celebrating with our Lord and Savior.

This year as I was doing my shopping for gifts an overwhelming feeling of hurt and pain came over me. I was struggling with what to buy Trinity for Christmas. What do you buy for a child that can't move her legs, can't crawl, and can't sit on her own? Well let me tell you there is not much out there. But God spoke to me in that moment and showed me that Trinity's gift has already been given to her, she has a great family and wonderful friends. Some of you she has never met, but God has connected us through all your prayers. When you see the smile on her face you realize there is nothing in this world that could break her spirit. She has shown me so much strength, patience, and love. So our worldly gift to her this year may have been small but our spiritual gift to her is what really matters. As we look into 2009 Shannon and I want to make a difference in Trinity's life and others in need. Making our relationship with God our number one priority and showing our children that God is what is most important in our lives. I know there are going to be days of anger and frustration, but who understands more then our Lord, who gave his only son so we could have eternal life with him.

So our gift to you, our friends and family, is that as we near another year we pray that you would make God your Lord and Savior. No matter what you are facing today He will carry you through it.

Thank you for helping us through this challenging year. We could not have done it without the support of all our family and friends. Your generosity and support will never be forgotten. All of you hold a special place in our hearts!!

Merry Christmas,
The Arthur's

Monday, December 15, 2008

Merry Christmas and Happy New Year!!

From our Family to Yours,
Merry Christmas and a Happy New Year!!

Love, Shannon, Miranda, Aubree, and Trinity

Wednesday, December 10, 2008

MRI Results

Yesterday Trinity had her MRI done and today we seen Dr. Haines, the Neurosurgeon, to get the results. Unfortunately it was not the news we were looking for. The piece of skull that they removed the last decompression has grown back and is blocking the spinal fluid from getting to a portion of her brain. This can cause problems with choking, breathing, speech, facial expressions, and eating. There was a chance this could have happened, but we were hoping it didn't. He would like to get this done sooner then later, but is willing to wait until after the first of the year. Shannon and I are going to talk this over and pray about what we should do. It is very difficult with the holidays only 2 weeks away. We are thinking that we will probably wait until after the first of the year so we can enjoy our holidays with family and friends, but we also have to consider our insurance (don't you love insurance!!). Please pray that we make the right decision, not for our sake, but for Trinity's. He just don't want any of her current symptoms to get any worse.

Yesterday we also seen the Urologist for the first time. They are going to do some testing on Trinity after the first of the year (dates still to be determined). This will involve some ultrasounds of the bladder and kidneys and some other testing that will determine if Trinity is voiding completely and not causing any damage to her bladder and kidneys. They will also be checking her bowels to see how that looks. She deals with constipation and we have to help her with suppositories of which they informed us that will never change and she will deal with this for the rest of her life. He wanted to make sure I understood that doing a catheter is never out of the question and that it will probably be likely in Trinity's future. He did a good job of informing me of the things that Trinity will deal with as she gets older and I appreciate his honesty.

The past two days have been emotionally draining. Just when things start looking good for Trinity we get the news of yet another surgery. Discouraged is my word for the day. I am using this blog to be honest with everyone so I hope you don't mind. Do you ever wonder how much a little body like Trinity's can go through? It don't seem fair that someone as small as her should have to go through yet another surgery.

On a lighter note, we took Aubree and Trinity to the Mall of America this past weekend. We found it odd that everytime we would walk into a store and out of the store the alarm would go off. After awhile we figured out that Trinity's shunt is magnetic and the alarms pick up on magnets. So Trinity will never be able to be a very good thief because she will always get caught!!

Monday, December 1, 2008


I know we haven't blogged in awhile, but things have been busy traveling to Iowa and trying to get settled into our new home. Trinity had her first Neurosurgeon appointment on the 19th. It went okay. We didn't learn a lot at this appointment. They are going to do an MRI on the 9th of December to check the Chiari and make sure that it is not causing the choking and gagging. They will have to put her under for this which is never fun, but it has to be done.

We also seen her pediatrician for the first time and we really like her. She is from Michigan which for some reason made me feel good!?! Trinity has been fighting a really bad cold and it makes it very difficult for her to breath so we are trying to get her over that.

Aubree started dance class and really enjoys it. She is turning 3 on Friday. She loves her birthday, what am I saying everday is Aubree's birthday!!!

Don't forget to send us your Christmas cards!! We love getting good mail instead of hospital bills all the time! I know some of you have been asking for our new address so I am going to put it on here so you have it:
3521 Maplewood Circle, Excelsior, MN 55331

We hope you all had a great Thanksgiving! We were very blessed to have been back in Iowa and spend it with our family and friends.

Monday, November 10, 2008

New Doctors

Hello to Everyone! It seems to be officially winter around here. We enjoyed a week in Iowa last week with family and friends. Trinity also had her last Physical Therapy appointment in Pella. This was really hard to leave Paula, she has been a lot of help for Trinity and Trinity loved her! I added some pictures of Trinity at Physical Therapy and with Paula.

On November 19th we meet with Trinity's new Neurosurgeon. I spent some time talking to his assistant and asked him different questions about Dr. Haines. He told me that the areas he specializes in most are: Hydrocephalus, Chiari, Spina Bifida, and Tethered Spine (all a bonus). This was great to hear since Trinity has all of these. Once we meet with him he will point us in the direction of all the remaining doctors.

We also found out the Shriners Hospitals get a lot of their money from people donating the tabs off of cans. Since Trinity will be going there in January, we have decided as a family to start saving these. My parents Rande and Paula, and Shannon's parents Boyd and Kathy, will have buckets at their homes. If you wish to drop them off there they will make sure to get them to me and I will turn them into our local donation spot. When I was on the internet looking into this, just off of tabs alone they raised $20,000 at one hospital. So everytime you finish a can of pop remember Trinity and SAVE YOUR TABS!!!

Thanks for checking in on us! We hope you all stay warm as the winter months creep up on us!

Paula and Trinity during physical therapy.

Trinity on the ball doing a good job of looking up at mommy to take a picture!

Tuesday, October 28, 2008

Settled Into Our New Home!!

It is official we are all now Minnesotans (don't know about the spelling)!! Last week Shannon and I got to move into our new home and unpack everything while the girls stayed with my parent's in Iowa. Then on Sunday we all came home together and have enjoyed our new home together. Aubree was very excited about her new room and it was like Christmas for her when we unpacked all the toys. For all you parents don't go buy new toys just put them away for about a month or more and then let the kids unpack them and they will think they are in heaven!! It has been nice so far waking up and enjoying our new space. Trinity seems to like her new room and new environment. I think she will always be happy as long has she is with the people she loves. Most of all it is nice to have us all under the same roof at night. We really missed having Shannon around. We would like to give a special "Thank You" to our parents for letting us live with them while we were awaiting our new place.

With a lot of to-do's on my list for the week, my number one is to get doctors setup for Trinity. She needs to see so many that it is quite overwhelming, but I think we have been living in a fantasy world for the last 2 months with no surgeries and no doctor appointments.

We want to "Congratulate" our friends Sarah and Travis Turnbull on the arrival of their little boy Sayer Michael. We are so happy that he is healthy and that he has brought such a blessing to the Turnbull family. Please pray for them as they adjust to the changes in their lives.

We will be sure to post some pictures of Trinity soon. She has grown so much and gives us a lot of smiles. We hope you all have a blessed week!!

Thursday, October 16, 2008


Sorry that we haven't updated in awhile, but things have been going pretty good. We kinda had a scare on Monday thinking that Trinity's shunt was not working again. She was vomitting and just not acting like herself, but it ended up being a bad cold. We are just glad it wasn't the shunt.
She continues to do physical therapy in Pella and it is going really good. Trinity is learing to waive bye-bye and gets really excited when she does it. It is funny how you take the little things forgranted with your kids. We get so excited when Trinity does something (like eating solids for the first time). She definately has made some progres, but we still have a long ways to go.
We did find a house and we will be moving next week. We are really excited to finally be a family again and to get Trinity into some doctors up there. Shannon has been living by himself for the past month in Minnesota and the girls and I have been living between Lynnville and Montezuma. We are just blessed to have such great parents that love us enough to let us live with them!!
I can't "thank" all of you enough for all the prayers. We feel them so much!! I am asking that you also remember Shannon and I in your prayers. Not very often do I talk about our feelings through all of this, but lately I have really been struggling with things, and when I see other children and then realize how far behind Trinity is and start wondering if she will ever crawl, walk, or even roll over. My heart breaks for her, but sometimes I think it selfishly breaks for myself. It is very hard to not be bitter at times, but God is constitantly showing me how much he loves Trinity and loves us. For those of you that know Trinity, she is full of smiles and is such a happy baby. She has definately been Shannon and my inspiration through all of this. I don't know too many babies that could go through all that and still have a smile on their face. I am sorry for rambling, but sometimes it is nice to just let it out and to have people praying for ya. We are so blessed to have such wonderful family and friends!!

Tuesday, September 30, 2008

Physical Therapy

Last week we started physical therapy for Trinity in Pella. She's been going GREAT!! Paula is her PT and she does a fantastic job with Trinity and shows her so much love. Trinity is showing more strength in her neck and does a better job of keeping her head up when you have her in a sitting position. She also lays on her tummy and holds her head up good when she does that. This has been one of the best decisions Shannon and I have made. We are determined that Trinity is going to be the percent that walks!! If you live in Pella or the surrounding area and need some PT I really recommend Sterling Physical Therapy!!

We still have not found a place to call home yet. Shannon and I looked on Friday and found a couple different places, but we are waiting to hear back on them. Please keep this in your prayers. The girls and I really miss Shannon and we need to get Trinity in Minnesota so we can start our search for doctors. I can't remember if I posted this or not, but we did get Trinity approved into the Shriner's hospital in MN. They have scheduled her first evaluation on January 9 (that is how far they are booked out). We are really excited for that!!

We just want to say once again how blessed we feel to have such great family and friends!!! Many of you have blessed us with money, gifts, and tons of prayer. We don't have enough "Thank Yous" in the world to express how grateful we feel!!

I also have to brag, the picture above is of my nephew Kodie's go cart. My dad had this painted on the front of it.
Have a great week!!! Love~The Arthur's

Tuesday, September 23, 2008

Poker Run Benefit

This past Saturday people gathered to show their support for Trinity. Bikers came from all around the state and some traveled from Illinois. This was another humbling experience for Shannon and I. We would like to say a special "Thank You" to Paul and Caryn Webb, and Randy and Gale Johnson. They put a lot of work into an awesome event! It started with a 100 mile Poker Run (motorcycle ride) including 5 stops. It then ended in front of the Montezuma Tap Room where they hosted a dinner and dance. They also had different raffles and a 50/50. The winner of the Poker hand gave the money back to Trinity and the winner of the 50/50 did the same. There honestly are so many amazing things that happened that day, I don't have enough blog space to blog about it. It was great seeing people we knew and people that we didn't come and support our baby. Someday we will tell Trinity about the amazing people that love her and supported her when she needed it the most. Shannon and I did not know the Webb's before they did this, but they have become our friends for life!! Thank you to everyone that came on Saturday and showed your support. You will forever be engraved in our hearts!!

Trinity is doing really good. She started therapy yesterday in Pella. We wanted to get her started on her therapy so we were not getting behind. We will make that trip twice a week. We have still been trying the solids, but she is not real sure about it and still has some issues with choking.

We have not found a home yet in Minnesota, so please keep that in your prayers. It is getting to the point that we really need to be finding something soon so we can get Trinity the doctors that she needs. We have looked at so many homes to buy that we feel like God is telling us that we are not suppose to buy right now. So with that being said we are going to rent until we are comfortable with buying something.
The girls and I continue to live in Iowa and Shannon started his job yesterday.

This is a picture of the band that played on Saturday night and some of their biker group from Illinois.
Love~The Arthur's

Tuesday, September 9, 2008

6 Month Appointment

It has been quite the week with a lot going on. We have been so busy trying to get things ready to move, packing enough clothes for about a month, and getting doctor appointments in.
Trinity is doing really good! She had her 6 month appointment today, which was about 2 weeks overdue, but we couldn't do it until she healed up from the surgery. He was very pleased with how Trinity looked and was growing. She weighs 16lbs 14oz and is 24in long. She seems to be a little shorter then most kids at her age, but they said it was pretty common with spina bifida. On Thursday we go to see Dr. Gilmer for her checkup. Her incision is healing really good and she has been holding her head up more and doing really good with her upper body strength. We also started feeding her some solids. She doesn't mind it, but she only eats about a 1/4 of it and then decides that is enough. Hopefully over time she will develop more of an appetite for it.
On Saturday Shannon and I enjoyed our 5 year anniversary. We had a great day and evening! My mom has been here and watched the girls for us so we could go spend the evening together, something we don't get to do very often. We have been very blessed over the past 5 years with a wonderful marriage and two beautiful girls (what more could you ask for). As we continue to go through life Shannon and I vow to eachother that we will do it hand in hand with God as our guide.
So with two final words as we head towards Minnesota, "GO VIKINGS!!"

Tuesday, September 2, 2008

Trinity is Home!!

Sorry, I should have updated this a couple days ago, but things have been busy. Trinity got to come home Saturday afternoon. She continues to amaze us! She's doing so good and is keeping her head up and showing more upper body strength. She has started to smile again and is acting more like herself. Dr. Gilmer will see her again on the 11th and then we are hoping to move on the 12th. We have a lot going on in the next couple weeks so please keep us in your prayers. Thank You~The Arthur's

Saturday, August 30, 2008

Trinity Update

Hopefully everyone enjoyed a beautiful week! Trinity is still recovering in the hospital and doing great. She moved from the PICU to the Peds floor yesterday afternoon. She no longer has the head dressing and they removed both her IV's. She seems to still be in a lot of pain and discomfort ( I guess if I had surgery on the back of my head I think it would probably be uncomfortable to lay on all day long). We are crossing our fingers that she gets to come home today. Shannon took last night's shift at the hospital. It was nice to sleep in my own bed and take a shower in my shower.
Aubree came to the hospital the other night and read a book to Trinity, so I added that picture. She really loves her sister and is always so concerned about her. I also added the picture of her head. I know you can't see it real great, but it gives you an idea of how big the incision is.

We really appreciate the words of encouragement and the prayers. It has been a long week for us emotionally. Hopefully we will be updating in the next few days to say that she got to come home!

Wednesday, August 27, 2008

Chiari Decompression

Hello to everyone! As the afternoon drags on and the day continues Miranda and I are feeling a little exhausted, but relieved. The surgery went very well and Trinity although in a lot of pain is doing well. She just finished dominating 6 ounces of formula. The doctor was a little concerned that her heart rate went to over 200 while she was being fed, so they are drawing blood to make sure everything is ok. The doctor thinks that her heart rate rising was due to being in pain because she was being moved around.

The surgery itself went very well, and was much needed from what doctor Gilmer said. She said that when she got inside the back of her head and neck she found that there was a membrane that had formed over a portion of her spinal column which was restricting the flow of spinal fluid to the 4th ventricle in her brain. I'm not 100% sure what all of this means or causes, but I know it was not good. The picture above shows with the dashed line exactly what part of Trinity's skull was removed. If you look closely at the picture you will see that there are two portions of the drawing that have diagonal lines on it. One is the Arch shape and the other is the small thin bone that you see that looks like a bridge across the spinal column. With these two bones gone her spinal column will have room to function properly with no nerve pinching or spinal fluid restrictions. This will also give the stem of Trinity's brain more room to reside and therefore function properly.
Thanks again for the prayers. We could really feel them this morning. This by far has been the toughest surgery to go through. She will be in the PICU for tonight and then hopefully moved tomorrow to the Peds. Tonight they will be checking on Trinity every hour, this will make for a long night. We will be sure to update if anything comes up. Trinity sends her smiles to all of you!!! :) (This picture was taken a couple days ago, she is such a happy baby!!)

Tuesday, August 26, 2008


Just wanted to update everyone with the time of our surgery. It is Wednesday at 8:15am. We think the surgery will last about 3-4hrs. She will be in the hospital at least 3days and in the PICU for 1-2 of those days. She currently has a really bad stuffy nose. They will not do the surgery if her snot turns green or if she starts to cough. So please pray that the cold does not get any worse and she starts to feel better by tomorrow morning. Shannon's mom, Kathy, is here to help us until next week and then my mom, Paula, will be out to help.
For some of you that haven't heard our exciting news, Shannon recently got a promotion with Pella Corp and we will be moving to Minnesota. He starts his new job on September 15th. We went looking for houses last week, but did not have any luck, so we would appreciate your prayers as we continue to find something. The girls and I will then move somewhere around the 15th (if the doctor lets Trinity leave) to Iowa for a couple weeks until we can find a place to live. We are really excited for this move since it will put us closer to home. We have a lot of homework to do in finding good doctors again, but God will direct us in all the right ways!!
We will keep you updated after Trinity's surgery. Thank you for your prayers before, during, and after the surgery.

Monday, August 11, 2008

Enjoying the Cool Air!!

We really don't have anything new to report. This past week we went back to Iowa and enjoyed seeing everyone. Trinity and Aubree are always so good in the car. Trinity is doing pretty good. She had another round of shots a couple weeks ago (still didn't feel anything). We don't have any appointments this week which is really nice! We haven't heard anything from Dr. Gilmer since she has been on vacation, as of right now the surgery is still planned for August 27th. We will have a lot of help from both our parents while Trinity recovers from the surgery. Trinity is showing us some progress with her physical therapy. She is showing more strength in her neck and she turns her head more to sounds. We still have not got her to rollover, but hopefully that will be in the near future. She also will not be able to start eating any solids until she can hold her head up. She still don't have alot of upper body strength like other babies her age do, but we never give up and keep working with her everyday.
Thanks for checking in on us. Sorry we don't have a lot to report. We hope you are having a great end to your summer!
Love~The Arthur's

Saturday, July 26, 2008

Chiari Malformation II

On Thursday Trinity was seen by Dr. Gilmer. She checked her shunt and was very pleased with how it was pumping and how Trinity looked. This was also the appointment that Dr. Gilmer was supposed to review Trinity's MRI. After reviewing there were several areas of concern that were noticed, some of which were more urgent than others. The MRI showed the Chiari Malformation to be quite apparent and quite severe.

Just so you are understanding what Chiari Malformation II is here is a brief description of it from a book that we have. It is a difference in the structure of the brain involving the lower brainstem, upper spinal cord, and the lowermost portion of the cerebellum. About 85-90% of children with spina bifida have this malformation. Only a small percent of children, however, show symptoms and problems that eventually require surgical management. When the Chiari is present, the brainstem and cerebellum are pushed down and compression may occur due to lack of space. In addition, the fourth ventricle is elongated and enters the cervical area of the spinal cord. This may block the normal flow of CS fluid and increase the compression on the brainstem. It also results in increased intracranial (within the skull) pressure or displacement of CS fluid into cysts in the spinal cord. Some symptoms that Trinity has been showing is upper extremity weakness and she tends to gag when she is eating.

This would mean surgery right away. Due to Dr. Gilmer taking a two week vacation and already having a full surgery schedule, Trinity is tentatively scheduled for the 27th of Aug. The procedure consists of Dr. Gilmer taking a generous portion of Trinity's skull on the back side of her head where the skull meets the vertebrae. She says that it is important to take a large amount so the surgery will only have to be performed once. It is probable that as young as Trinity is her skull will partially grow back. This will relieve the pressure that is being applied on the stem of Trinity's brain, which is causing her spinal fluid to be restricted and nerves to be pinched. There is a certain amount of risk that is involved this surgery. Anytime a procedure is done so closely to the brain there is a risk of damage. There are also a number of large blood vessels that are located in this area and a blood transfusion is probable. There are things down the road that Trinity could face with having Chiari Malformation II, but most of them we will not know for sure until she gets older (walking, hearing, speech, etc...).

Secondly the MRI showed that Trinity has a tethered spine. When the surgery was performed to both close Trinity's spinal column and her skin on her back the two healed well, but as I understand it they grew together. It will not be until Trinity starts to grow and walk that we will be able to understand how this will effect her, or if it will at all.

Lastly, Dr. Gilmer can see where Trinity has scoliosis. She says that this is not uncommon at all with spina bifida children. She says that time will tell whether or not surgery will be needed to correct this problem also.

This is all a lot of information, but hopefully you understand what to be praying for. This is a lot to digest. When we think of all the risks and Trinity having to go through another surgery it makes us sick to our stomachs. When we found out that Trinity had spina bifida we didn't expect half of the things that we have faced in the past couple months. Sometimes I ask God "Why?". I will admit that the last couple days that question has been going through my mind a lot. I spent some time tonight going through some past posts and it pretty much brings me to tears. I can't believe all that Trinity has faced in her short life. I am really asking you to get on your knees and pray for our little girl. Pray that God would bring healing to her body and that if this surgery is what he wants for her that he would give Shannon and I some peace about it. Pray that Trinity would have a speedy recovery and that this would fix what needs to be fixed and not cause anymore damage. Shannon and I could really use your prayers also. It is a lot to have on your shoulders when you have to make decisions that involve your child's life. Please pray that we are making the right choices with Trinity.

Thursday, July 24, 2008


Today we see Dr. Gilmer. She will talk to us about the MRI and check her shunt. I will be sure to update you tomorrow on how our appointment went today. Here is a picture of Trinity's head after her surgery. She's doing really good!

Monday, July 21, 2008


Sorry for the delay, but things have been kinda busy around here. Trinity is home and doing great! She got to come home on Thursday. She still has some pain, but it is usually at night. We catch her putting her left hand up next to her incision and rubbing it, we are pretty sure that is were the discomfort is coming from. She's really a different girl and seems so much happier.
This week we have the privilege of having Kayla Jansen at our house. She flew in last night from Iowa and will be staying with us until next Sunday. We are really excited to have her here!
Trinity has an MRI scheduled for tomorrow at 8:40 am. They will have to give her general anesthesia so she don't move during the testing. They said it can take anywhere from 2-3 hours. This will help Dr. Gilmer see how bad the Chiari is. I will let you know how this goes. I will also update you on our appointment from last week.
Thanks again for the prayers, we can really feel them!!
Love~ The Arthur's

Wednesday, July 16, 2008

Shunt Revision

We just wanted to take some time and update everyone on our current situation with Trinity. We are currently at Beaumont Hospital and Trinity has had surgery and is now in the Pediatric Unit. Yesterday we had a doctor appointment with many different doctors at the Spina Bifida clinic. They were concerned with her shunt and requested that a CT scan be done. After having that done Dr. Gilmer found that her ventricles were 2-3 times the size they were at birth. Shannon and I got a phone call yesterday requesting that Trinity come in right away in the morning for a Shunt Revision. We feel very greatful that we had the appointment yesterday and that the doctors noticed this. God knew what he was doing when he scheduled that appointment! If this would have gone on much longer Trinity could have ended up with too much pressure on her brain which can result in brain damage. She really was not giving Shannon and I any reason to be concerned, but they thought she probably would have in the next couple days. Basically the shunt is no longer in the ventricle so they need to go in and replace the catheter that will go into the ventricle(if any of this is making any sense to you guys). Her head has basically grown in size causing the catheter to fall out. After surgery Dr. Gilmer also found that the shunt had some blockage which required it to be replaced. Please keep our baby in your prayers. She is having some discomfort and pain. Trinity is also sharing a room with a 16 year old girl that had scoliosis (spelling??) surgery. Please pray for her also as she is having a lot of pain.
As of now Trinity will be here overnight. They will recheck her in the morning and go from there.
We will keep you updated on how things are going over the next couple days. We will also spend some time this weekend or next week updating you on our doctor appointment yesterday. It went really good and we got a lot of information.
Love~The Arthur's

Wednesday, July 9, 2008

Neurosurgeon Appointment

Last week Trinity was seen by Dr. Gilmer-Hill (neurosurgeon). She had a concern with a few things. Trinity has been choking when she eats, her soft spot is kinda full, and she is losing some upper body strength. With that being said she requested to have an MRI done of her head and spine. She is about 99% sure that she has the Chiari Malformation II and would like to see how severe it is. The soft spot can be her shunt or it could be the cause of the Chiari. We don't know for sure what this means and what they will do to fix this. Next week we will meet with all the doctors from Children's in Detroit. They will also have access to the MRI and we can get a second opinion. Dr. Gilmer-Hill still has many connections at Children's and will work with the doctors there. We are still not sure when they will do the MRI, we were hoping to have it done this week, but because she has to have general anaesthesia, there are a few more steps to the process. Patience is something God is really teaching me through all of this, something I lack!! We will definitely keep you posted on the MRI and the doctor appointment next week.
On another note, we got to go to Iowa last weekend for the fourth!! Are we crazy, probably, but it was a good time and we love spending time with our family and friends. (Gas is cheap, ha ha!!) The girls did really good on the car ride there and home.
Trinity also started cooing (spelling??) this week. It is the cutest thing and there are times she will go on and on like she is trying to carry on a conversation with us. It feels so good to see her smile and giggle after everything her little body has been through. As a parent you hate seeing your child in pain, something positive is nice for a change.
I love these two pictures. Shannon went fishing on Lake Huron the other day and took these pictures.

Saturday, June 28, 2008

Trinity 4 Months Old!!

Well, can you tell it is summer out there?!?! It is getting hot here and today our air decides that it don't want to work, not a lot of fun in the Arthur house! But we will survive, we have been without air before we can do it again.
Trinity turned 4 months old last Saturday!! She is growing more and more everyday and getting a personality. She is finally starting to like some of the toys we have for her (bouncy seat and swing). The picture that I have on the left side is of Trinity giggling when we took Aubree to the park. It was the first time we ever heard her giggle. The picture below is of her on the floor with some of her toys. She is starting to try and reach for the things above her, but she don't get quite high enough.
We had her four month appointment on Friday with her Pediatrician. Trinity weighed 15lbs. 3oz. and was 23 1/4 long. He felt like she was doing really good and was probably a little behind on some things (rolling over & upper body strength), but that it was to be expected with her condition. We decided to space out Trinity's vaccines, thanks to an email I got from one of my friends Liz. So Trinity only had one shot yesterday and an oral vaccine. We feel really good about our decision and feel like we took the time praying and seeking what God wanted. I know everyone has their own opinion on what is right and what is wrong, but Shannon and I felt like this is what was right for Trinity. We are still waiting for our appointment on the 15th of July, at Children's in Detroit. I think this will be a good opportunity for us to get a second opinion and get some more advice on the different things that Trinity is dealing with (bladder control, leg movement, PT and OT).

Last weekend the Pella PDSN that Shannon works for had a golf outing to raise money for Trinity. This was a fun day of golfing and hanging out with friends. A special thanks to the Wittmer's and Gray's for putting so much work into such a wonderful day. The rain didn't stop anyone from having fun, there were around 40 golfers in attendance. In that 40 were some guys from Iowa and Nebraska, Nick Cross, Tommy Williams, and Wes True. They all flew in on Friday and surprised Shannon. After golfing we enjoyed an evening at the Gray's hanging out. The picture below is of the group of golfers.

On another good note, Aubree is potty trained!!! YEAH!! She is doing really good and has had very few accidents. I guess she just wanted to make the decision on her own. Enjoy the rest of your weekend and we hope you all have a safe 4th of July!!
Love~The Arthur's

Tuesday, June 17, 2008


By the title of today's post I am sure I have you on the edge of your seat! God has truly blessed us over and over. We sit back in amazement of how he is working in our life. Every week I start with a fun filled day of calling the insurance company and hospital/doctor offices to discuss bills and things that are not being paid. If you remember back to a couple months ago when we had Trinity's third surgery with the plastic surgeon we had said that our insurance company was not going to cover it because it was out of our network. Yesterday I talked to the insurance company about all that we needed to get our appeal started and to try and get this bill paid. They wanted a letter written from the plastic surgeon stating what he had done to Trinity and that it was an emergency surgery that needed to be done ASAP and he was the only one available to do it. When I called the doctor's office to see if they would be willing to write this letter up the lady that I would work with in the billing department was not available, but would call me today (Tuesday). While I was getting ready this morning for our weekly play date with some girls from church I got a phone call from the billing department. I explained what I needed from them and with much surprise she told me that the doctor had talked to her a few days earlier about our bill. He wanted her to except what the insurance company would pay and to write off the remaining balance leaving us with nothing to pay. I had to have her repeat what she had just told me because I was in complete shock. The doctor told her that he knew we were very stressed about the financial part of the surgery and didn't want us to have to worry about it and stress over what the insurance company wasn't going to pay. Of course I broke down into tears and thanked her about a billion times. It just showed us what a big heart that doctor has and that he put Trinity's needs above his.
What an AMAZING GOD we serve, AMEN!!! I can tell you so many stories about the wonderful things he has done for us. In fact I am pretty sure we could write a book. From the donations that people have given us, the blessings of living in Michigan, the doctors that Trinity has, the friends and family, etc... So many people have taken time out of their busy schedules to help our family not feel such a burden with our finances. We can not "thank" ALL of you enough for your continued prayers and support. Everytime you pray GOD gives us a sense of peace that everything is going to be okay and reminds us that he is in control and will take care of us in every situation we are in.
On another note: Trinity seen her Pediatrician on Friday of last week. He was very pleased with how she was looking, but was a little concerned with her upper body strength. He recommended that we go to the Children's hospital in Detroit to see a group of doctors that work with patients with spina bifida. Yesterday I made the appointment and they will not be able to see her until the 15th of July. I was hoping for earlier, but we will take what we can get. She will see the Neurosurgeon before that so that makes it a little less stressful. In about a week and half she has her 4 month appointment. I have really been struggling with the immunization shots and what are the appropriate ones that Trinity should have and what are the ones that she really don't need. Please pray that Shannon and I make the right choice for Trinity and that it is what GOD wants and not what we want or others want. We have also started her PT and OT and we will be doing that on our own until school starts again in September. She really don't seem to mind it, but it is wearing her out at night.
Sorry I am so long winded, but I felt like there was a lot to talk about in this post. To those of you in Iowa, we are praying for you as you deal with the floods and all the tornadoes that have touched down.
We send our love to all of you and hope you have a great week!!
Love~The Arthur's

Tuesday, June 10, 2008

"Riding For Trinity"

God is GOOD!! We can not express how blessed we are to have such great family and friends.
On Saturday they held a benefit for Trinity that started with a Poker Run (motorcycle ride). They had 179 bikers and served around 500 people for the supper. The total as of today that has been raised is a little over $12,000! For those of you that were there can attest to how amazing it was see all those people supporting Trinity. Shannon got the privilege of riding in the Poker Run. My cousins from Des Moines, Cindy and Danny, had an extra bike and let him ride it. It was an experience that I am sure we will both never forget. I followed and went to a majority of the stops. Everytime they rode by on their bikes and waved at us it just gave me chills knowing that they were riding for our little girl. We had so many emotions on Saturday. The love and support that we feel from our family and friends is so overwhelming. Even after being gone from the community for almost a year you all made us feel like we were home! We owe a special thank you to the "Co-Line Team" for all your hard work to make this a huge success. We have provided some pictures from Saturday.
Once again "thank you" to everyone for making Saturday such a huge success!!
Love~The Arthur's

Wednesday, June 4, 2008

Change in Location!!

For those of you that will be going to the benefit on Saturday, they have decided to move the BBQ and the band to CoLine, it was originally at Old Setts. This way the weather won't keep us from having a good time!
For those of you that live in the towns that the motorcycles will be going through (New Sharon, Barnes City, Montezuma, Kellogg, Lynnville) make sure to watch them drive by and wave, I think it is going to be a humbling experience to see all those people supporting our daughter.
We can't thank everyone enough for the support that we have received. God has blessed us with amazing family and friends!!

Sunday, May 18, 2008

A Night at Blank

As you know from my last post we had quite a scare on Thursday with Trinity. There were still some tests that had not come back yet and on Friday we got a call from Blank saying that the culture had come back positive and that she has Urinary Tract Infection. This is probably what caused her to breakout into hives. Because we are still doing the catheter once a day and they took her off of the antibiotic last week this is probably what caused it and probably something we will deal with until we no longer have to do the catheter. They then wanted to admit her into Blank and start her on IV antibiotics. It just happened that Kathy and I were already in Ankeny so we drove right over to the hospital to get it started. They did one dose on Friday night and then did another Saturday morning. After the second dose we got to go home. They started her on a antibiotic that she will take orally for 9 days twice a day and then when that is gone she will be on another antibiotic that is given once a day until we are done with the catheter. They also did an ultrasound of her kidneys and they both look good.
Of course this is not how I thought our trip to Iowa would go, but at least we caught it and she can be treated for it.
Hopefully the rest of our visit will be a little less eventful.
Make sure to check out the poster on the side of the blog for Trinity's benefit. We will be back for that and can't wait for all of you to meet Trinity!

Friday, May 16, 2008

Hospital Visit in Iowa

As most of you know last Friday we traveled to Iowa to visit our family and friends. Our week has gone really good up until yesterday afternoon. A good friend of mine, Caprice, took me to Des Moines for a girls day. My mom watched the girls for me and gave me some time to myself. On our way home and about to pull into my mom's driveway she calls me and says that Trinity is very lethargic and has some welts on her face. By the time I got inside the house Trinity was covered in welts and was not waking up. I immediately called Shannon, who is in Michigan, to see what he thought we should do. We called Trinity's neurosurgeon and she wanted us to get her to a children's hospital right away. My Aunt Robin works at the Medical Clinic in Monte and had us bring her in there first to make sure she was okay to travel. Before leaving for there we were real close to calling the ambulance. Dr. JB Paulson checked her over and thought that it looked like she had hives. We then took her on to Blank Children's Hospital in Des Moines. Normally something like this they would have just treated at the Medical Clinic with some antihistamine, but because of Trinity's situation we have to be very cautious of her shunt.
When we got to the hospital they got us right into the ER and got Trinity checked, drew some blood, and started an IV. The doctors ran some tests of which all came back normal. They are still waiting on the culture that could take about 48 hours to get back. As the night went on Trinity's hives got better and she was acting a lot more alert. They gave us the option that we could admit her into the hospital and wait to get the rest of the tests back or we could go on home. They felt like her shunt looked fine and the swelling had gone down around the shunt. I felt comfortable with how Trinity was looking and that she was improving so we chose to go back home (Lynnville).
Trinity slept really good thru the night and when she woke up this morning she didn't have any hives. We are not real sure what caused this it could be a number of things. Because she has a latex allergy it could also be that she came into contact with that and we just didn't know it. Aubree was also diagnosed on Wednesday with the Hand, Foot, Mouth disease. Part of me feels that it is a little ironic that she broke out with that a day before Trinity breaks out in hives, but the doctors don't think it has anything to do with Trinity.
Please continue to pray that the rest of our stay in Iowa goes a lot less stressful and no more visits to the doctors or hospitals. I guess Trinity just wanted to see what Iowa hospitals were like!!
I hope you enjoy this beautiful weather and have a great weekend. Thank you for all your continued prayers.

Wednesday, May 7, 2008


Hopefully everyone is having a great week! We have been enjoying the sunshine by going to the zoo and the park.
Yesterday Trinity had a doctor appointment with the neurosurgeon. The doctor was very pleased with how well her back looks. She also checked her shunt and talked to me about the hearing test that Trinity failed. She looked over the report and felt that by reading it she feels that Trinity has Chiari Malformation II. She said that 90% of Spina Bifida babies end up with this and it is not unusual. She really don't want us to be concerned right now, but that they will check her again when she is around 6 months and see what things look like then. She will also probably do an MRI sometime between 6 months to a year of age.
We also met with some people from Early On. This is a program through Rochester Schools that will help Trinity with Physical Therapy and Occupational Therapy. They will also work with her on Visual Reception and Fine Motor skills. We can start as early as tomorrow, but with leaving on Friday we will probably wait until we get back from Iowa. The class will be twice a week in the classroom. There will be sometimes that they will come to the home and work with her also. We are really excited to have this opportunity for Trintiy.
We are getting really excited about coming back to Iowa. It will be a long trip for both the girls, but especially Trinity since she has never been on her back for that long. We have had many requests to see us when we are back and we hope that we will get to see everyone, just know that we also have to think of Trinity and that she can't have too much stimulation. There will probably be some days that we just hang out at our parent's homes. Shannon will not be joining us until Memorial Weekend.
Love~The Arthur's

Thursday, May 1, 2008

Trinity Makes Progress!!

Sorry we haven't updated in a week, but we wanted to wait until after we seen the doctor on Tuesday. Monday Trinity had her two month checkup and shots. She has grown a lot and weighs 12lbs 12oz. Unfortunately she had her two month shots and she didn't feel a thing. I never imagined that I would want to hear my daughter scream in pain, only to know that she felt something. She didn't even flinch, but we are not going to let that get us down, she has shown us so much strength and determination, that we know she WILL have feeling there and she WILL walk someday!!
On Tuesday she seen the plastic surgeon. This was one of the best days we have had since Trinity was brought into this world. He removed her stitches and the glue and I am sure you can tell by looking at the picture it has stayed closed, HURRAY!! The doctor was ecstatic as were we. Finally we feel like things are looking up and Trinity can continue to move forward towards the goals ahead. She can lay on her back as much as she likes (which isn't much) and we can make our trip to Iowa (with a lot of stops).
My family is here; my mom, sister, Kodie, Shaye, and Grandma Shearer. It has been great having them here and meeting Shaye for the first time. She is adorable and looks just like her brother. They will follow me back to Iowa.
We really appreciate all of your support and prayers. This has been a trying past couple months for us, but God is faithful and loving. Trinity's life has had a huge impact on so many people and it brings a lot of joy to Shannon and I knowing this.

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

Trinity Recovering

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

Surgery is complete

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.

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

Updates on Trinity

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

Monday, March 31, 2008

Finally Home!!

We are finally home with Trinity after two weeks of being in the NICU. Trinity is doing pretty good. She got home Friday afternoon and enjoyed a peaceful weekend with her mom, while daddy and Aubree were in Iowa. Shannon got home last night and Aubree is going to stay in Iowa until next weekend. I really miss her and can't wait to see her next weekend!
Today the Home Health nurse came to see Trinity. She weighs 10lbs 4oz!! I don't think she has any problems eating!! She did point out that Trinity was a lot more fussy then the last time that she seen her. Shannon and I both feel the same way and are wondering if her back is starting to bother her. It is really hard to keep that area clean and we have the concern that urine and stool are getting up there. She will see the surgeon on Thursday and hopefully we will have made some progress with the healing of her back. On Wednesday she has an Audiologist appointment to have her hearing checked again. When she was a little over a week old she failed the hearing test on her left side. We continue to do the catheter once a day per the Urologist until we see him in a couple weeks. Hopefully at that appointment they will let us do it as needed since she has been urinating on her own with no problems.
Please keep Trinity in your prayers as her back continues to heal. Our biggest concern is that she doesn't get an infection in that area that is open. You can tell that it is bothering her and we feel so helpless when we can't help her feel better. Thanks again for your prayers and support! We love all of you so much!

Thursday, March 27, 2008

Trinity Coming Home!!

Trinity will be coming home tomorrow afternoon. On Wednesday night her surgeon put big steri strips on to pull the skin together and try and close the opening on her back without having to go back in for surgery. They will check this once a week for two weeks. At two weeks the surgeon will then take them off to see if the skin has come together at all, if it doesn't then they will consider going back in for surgery and possibly doing a skin graph. We are praying that this works and Trinity will not have to go back in for surgery. She will be on an antibiotic for another two weeks, but it will be oral and something we can give her at home. She has been such a trooper through all of this and all the nurses absolutely love her!! We have decided to let Aubree stay in Iowa for another week and then she will come home next weekend when Tiffany and Jerad come out to see us. This will give her some more time with everyone in Iowa and give Shannon and I a chance to get settled with Trinity before Aubree comes home. Please continue to pray for the healing of Trinity's back and safe travel for Shannon as he travels back to Michigan on Sunday.
* The picture is of Trinity's back after they put the steri strips on.

Sunday, March 23, 2008

Happy Easter!!!

We hope everyone is having a great Easter Sunday. We decided that cafeteria food is not the greatest thing to eat on Easter, especially when it is burritos. Aubree is in Iowa and enjoying her time with her cousins, she doesn't want to talk to her mom and dad on the phone (it makes mom cry). On Thursday Aubree got to enjoy a Spring Fling that the hospital had for the family and patients in the NICU and PICU. I added some pictures of her after she got her arms painted. She had a lot of fun!!
Trinity is doing pretty good. The healing process is taking a little longer then we thought it would, but the surgeons seem to think it looks better everyday. There is still an opening that they are concerned about, but they are trying different things to get the skin to come together. Tomorrow they are going to use steri strips to help bring the skin together. We are praying that this works and that she don't end up in surgery again. She continues to eat like a champ, she weighs 9lbs 6oz. She makes sure that she don't miss a meal!!! They are only doing the catheter one time a day and only getting small amounts. The urologist is hopefully going to see her while she is in the NICU and reevaluate her. She has diaper rash pretty bad, so at night they open her bottom up to a heat lamp to dry it out.
The nurses that Trinity has had the past 3 days have adored her. They told us today that they were fighting over who was going to take her home. They moved Trinity so she is not in her own room anymore she shares a big area with about 9 other babies. There are very rarely any quiet moments with the sounds of babies monitors and lots of babies crying.
Hopefully we only have one more week of being in the NICU and then we won't have to come back. She has 5 more days of her antibiotic. Shannon is leaving for Iowa on Thursday and then he will bring Aubree home with him on Sunday. I will be pretty lonely, but spending most of my time at the hospital. Thank you again for all the kind thoughts and gifts that you have been sending us. We can not thank you enough. God has truly blessed us with great friends and family.

Wednesday, March 19, 2008

9 More Days

Well we left the hospital yesterday with the understanding that Trinity was going to leave the hospital with a pick line (an IV that she could go home with) and come home possibly Thursday or Friday. When getting to the hospital today Trinity was due for her antibiotics and they were needing to do a new IV, but they wanted to wait until they new if they could do the pick line. After waiting for an answer from the surgeon and not getting one, they decided to put an IV in since they hadn't heard anything from the doctor. Because they had put an IV in about every vein in her hands and feet they decided to put one in her head. I was not real happy to see this and when the neurosurgeon came in to see her around 6:30 tonight she was also not happy. Babies with hydrocephalus should not have IV's put in their head so they had to take the IV out and as we were leaving they were trying to find a new place to put it. Trinity needs to be on this antibiotic for 2 weeks, so with that said we found out today that they will be keeping her in the NICU for another 9 days. We were not overly thrilled about this, but they really don't want to send her home with the pick line and they would like to keep an eye on the incision to make sure it heals correctly. On a positive note, she's urinating more on her own and they are doing the catheter twice a day. Her incision looks good and it has not been leaking like it was in the beginning.
Aubree will be going home with Boyd and Kathy, they are leaving on Saturday. Shannon is coming to Iowa the following weekend and he will bring her home with him. She's really excited to see everyone and Shannon and I both think it will be really good for her.
Please keep Trinity in your prayers as she continues to heal from her surgery. We would also ask that you pray for safe travel as Boyd drives to Michigan tomorrow and they leave on Saturday to go back to Iowa.