Thank You

Thank You

To all of you who supported our family during that first year with Wil. Your prayers, words of encouragement, gifts, and friendship were needed and will never be forgotton.


I have a scrapbook that is filled with cards and letters from people who live all over the country, some are from people that I have never met. So many lives were impacted by Wil, it was amazing. Every once in awhile I will look thru the scrapbook and can still be encouraged by the words that were written for me and my family. This entire blog is dedicated to all of those who took an interest in my family's life. Those of you who still inquire how 'Baby Wil' is doing and to those of you who still pray for his healing and wholeness. Thank you for your perserverance and dedication.

The Wigge Family

11) Almost lost him . . .

Wil came home in April of 2000, but it didn't last for long. He had started to vomit within the second week of being home and we had taken him to the Emergency Room ( local hospital) and he was admitted for the weekend due to dehydration and low electrolytes. When he was better we took him home. He would occasionally vomit, but he didn't seem to be getting any worse. We had a nurse come to our home weekly, thank God for that. Two weeks after the emergency room ordeal Wil's nurse came for her scheduled visit and I told her that Wil didn't seem to be doing very well that morning. He had started to vomit in the middle of the night and by that morning he had vomitted about 2 -3 times. I had called the doctor and made an appointment for later that day. She took one look at him and told me to take him in immediately. She checked his vitals and sent me on my way. She said that he had a grey tint to him. I didn't notice until she had said something. Maybe it was because I was with him while he worsened or because I was extremely tired or it could be that I just didn't want him to be sick. I remember his eyes looked sunk in a bit but beyond that I didn't notice his coloring. Of course now I'm a pro at all the signs of dehydration, Wil has experienced enough of it. We catch it pretty early now. It's crazy how quickly he could get bad. The day before we were in Indy for a check up.

Once we got him to the pediatrician's office, his doctor saw him, took him, and we followed him through the office cooridors into the hospital into Peds ICU. They intubated him and put him in an ambulance to Indianapolis ( children's hospital). Later his doctor told me that he didn't know if Wil was going to make it. His dehydration had been so severe that his potassium had dropped into low enough levels that he could of gone into cardiac arrest.
That day was a breaking point for me. I remember sitting in our car in the hospital parking lot with my husband and for the first time since Wil was born, I lost it. I screamed at God and believe it or not gave Him an ultimatim, "Heal my son or take him, I can't live this way." I dropped my face into my hands and loudly sobbed. We didn't have the money for another stay. Food, gas, a place to stay, seperation from my husband and son (who knows who I am) - I couldn't do it again. Bryan had already missed a lot of work due to Wil and he couldn't keep taking time off, we couldn't afford it. Saige hated me for leaving him the first time and when he found that Wil had gone back to the hospital *far away* he cried and cried and screamed and screamed.
This all happened on a Thursday so we decided to wait until Friday night when Bryan got off work to go to the hospial. We spent the weekend sleeping in waiting rooms or in the car in the parking garage. The Ronal McDonald House was full and we were coming back home Sunday night. We decided that we would see Wil every weekend and throughout the week I'd go for a day or two. Wil was admitted into the Peds ICU and needed to get his electrolytes back to normal. The first few days were hairy but he did improve. Later that week Wil had an endoscopy to help find out why he was vomitting so much, they found out that he had acid reflux.
Ironically I also had to have an endoscopy around the same time. After giving birth to Wil every once in a while I would suffer from severe abdominal pain that wrapped around into my back and it was hard to breath. I thought I was having anxiety attacks . . . yeah . . . it wasn't. The pain had become so severe that I finally went to the hospital ( a week after Wil was admitted) and found out that I had gall stones stuck in my bile duct and my gall bladder wasn't doing too well either. Actually, the rest of me was starting to swell up! So while I laid in the hospital for a weekend my son was also laying in a hospital 110 miles away. I lost it again! Timing was terrible or so I thought. I wasn't suppose to be in a vehicle for about 2 weeks. So I called every nurses shift every day to find out how Wil was doing. Sometimes I think God allowed it to happen so I had a reason to stay home and people wouldn't judge me or so I wouldn't judge myself. As much as I loved Wil Saige needed me too. I felt that I was always forced to chose between my children. I hated that. Wil stayed in the hospital for about 6 weeks and he finally came home again. The picture above was taken after Wil had come home. He was about 6 months old and weighed about 9 lbs.

10) coming home . . .

Wil was released from the hospital April 21st. We were there for roughly 100 days or three and half months. I stayed in Indianapolis, two and a half hours away from our home by myself. Bryan had to go back to work within days of Wil being born. Saige wasn't able to be in the NICU, so for the first time in his life he had to be babysat. Saige was around two at the time. I was only able to see Bryan and Saige on the weekends. We had an outrageous telephone bill and that was the year that gas prices started to rise. We were fortunate enough to stay at the Ronald McDonald House, what a blessing that was. During my stay I met some wonderful people that I will never forget and wish that I stayed in contact with them better. The seperation was hard on my already difficult marriage, my two year old hated me - thinking that I abandoned him, and my baby was no more attached to me than a stranger. When we were able to go home I was sooooo glad. I just wanted back our normal lives. LOL Little did I know . . . nothing would ever be normal again!

The picture above is of Wil a few days after he came home. The black is where the skin graft is falling off because the new skin is forming. He was such a cutie. He'd sleep the whole night thru and hardly ever cried. He loved to cuddle. Not much has changed, Wil is still a cutie, he sleep's the whole night thru, and he's daddy and mommy's cuddle bug. If you want to chill and watch a movie, Wil is the guy. Of course he does cry more often now, usually when he doesn't get his way or he is fighting with his brother's. LOL

9) first time . . .

Today was a day of firsts. The picture on the left is the first time Wil was able to be put in a baby swing. The picture on the right was the first time Wil was able to wear an outfit. These pictures were taken around the end of March 2000.

I was so excited the day Wil could wear clothes. I guess it made me feel that he was better and things seemed a little more towards the 'norm'. Of course because of the tubes we needed to watch what kind of clothes Wil wore, they needed to button. Wil was around two and a half months old. He was completely off the ventilator and was being NG tube fed ( through the nose). If you look at Wil's hand in the right picture you can see how his hand is turned in like he's making a fist. His hands stayed like that for about a year. Physical and Occupational Therapy helped with that, but he still, at six, has mirror image. If the right hand does something the left copies. He's aware of it and tries really hard to control it. One of these days, I suppose.

8) Healing...

These pictures were taken on March 28th. Wil's stomach was healing very well and so was his back. After his myelo repair he had some air pockets under his sutures and when they were removed his skin ripped open in a few spots. (he had three holes) Within a few weeks they were completely healed. The tube you see in his nose in the left picture is a NG tube (Nasal Gastric). He had a mixture of breastmilk and formula. He wouldn't take a bottle, the beginning of our feeding troubles, we just didn't know it yet. Wil is also off the ventilator. He was taken off March 18th. He was doing well and it was a blessing to hold him without all the cushions and tubes.

7) Back repair...

This picture was taken a day before Wil had his myelo repair. On Saint Patricks Day, March 17th, Wil had a seven hour surgery to repair his lipomyelocystocele. Everything went great! His back was now flat. It was hard to adjust to the way Wil looked with out his 'shell'. ( for me) For over two months my baby looked a certain way and I was use to it, the change kind of freaked me out a bit. His 'shell' weighed about a pound (estimate). It was much larger than when he was first born. I look at the picture and I 'm amazed with it. It's hard to believe now that Wil had that on his back. Now he just has some fatty tissue and a portion of it sticks up a bit. We use to tell Wil that he had a tail and only really cool kids have tails. Our oldest son wanted a tail and he'd go to school bragging to the other kids that his brother had a tail. Our friends children wanted tails, it got ugly.... we had to stop!!!
It just seemed a lot more fun than to explain to a child, "You had lipomyelocystocele repair, and when they removed the excess you didn't quite have a normal looking bum". He's six now and half the time he will still refer to his bum as his tail. I love it!!!

6) first time off the ventilator...

February 5th & 6th was the first time Wil was taken off the ventilator. It was the first time we were able to see a good view of his face. He's sooo adorable!!! Such a handsome baby! I know, I know I'm biased. He was such a good baby too. He never fussed much, if at all. Maybe it was the drugs..... he was good regardless. I used these pictures as his baby pictures to pass out to people. Our excitement about being off the ventilator was short lived. By Valentines Day his breathing was turning for the worse so he had to be put back on the ventilator. It was nice even for that short time to see him with out it though. It's amazing, when in this situation, what you find to be a blessing. Those nine days were very joyous for me. I cried when his breathing wasn't improving and they had to intubate him again. I always felt that with every couple steps forward we always took a step back. Now I just look at things like we're standing in line, we go forward then we stop and rock back and forth, swaying a little bit, but eventually the line moves and we go forward once again. (Of course some of us 'rock' for a long time) LOL!!!

5) Time for some plastic surgery...

On January 30, 2000 ( also Bryan's 23rd birthday) the sutures ripped on Wil's silo. His liver kind of 'popped' out as a result (I have the picture but thought it would be too much for most people). Wil's abdomen is too small and the omphalocele is too big, what shall we do now? His surgeons joined forces with plastic surgery and they made some magic! The next day they placed appligraph over his omphalocele. They also made his stoma for his ileostomy. Within days the skin graft started to take! February 7th Wil had surgery again and this time the second skin graft ' alloderm' was placed on the omphalocele. The pictures on the top were taken on January 31st and the two pics on the bottom were taken on February 23rd. In the fourth picture you can see the pink edges on the outside of the graft, that is where the new skin is growing in. He will have new skin buds come through the alloderm and his skin will grow and attach itself and push the alloderm off. It's amazing how this works, but it really does work.

4) 1st time to hold him

Wil was 6 days old in this picture and it was the first time that I had been able to hold him. Holding him was scarce but with good reason. We had to hold him with pillows and a cushion as to not put any pressure on his back. The tubing sucked but was obviously necessary, considering he couldn't breathe on his own and needed the ventilator.

This day was also Bryan and I's 2nd wedding anniversary. It is only by God's grace that we are still married, that and we're both stubborn. LOL Please if you or someone you know is going through something of this nature (child sick in hospital) please encourage them to seek marriage counseling, especially if they are newly weds. We were still trying to learn each other and then WHAM life happened. Both of us handled situations differently at the time, I needed to talk about it and Bryan just shut down. From the time in my pregnancy when we found out about Wil we were at odds. It lasted until he was about a month old. It was terrible. People have different coping mechanisms and it doesn't mean that either one of them are wrong but you do need to learn to work together . We shut down completely with one another hardly even speaking. Poor Saige, he had to endure his immature parents for that stupid season. Thank God it was only a season! We got into a huge fight and agreed that neither of us would divorce. We agreed that we were both stubborn and didn't believe in it(divorce), so instead we'd stay married and live miserable together for the rest of our lives! Well.....it didn't quite work out that way because Bryan is my best friend and I'm completely in love with the guy! The point is, is that it's very difficult to go at it alone and unfortunately a lot of relationships don't end up like ours. Getting help isn't weak it's wise.

3) omphalocele repair

There's our baby (far left) with the first attempt to repair the omphalocele. They call it a 'silo'. Basically, how I understood it, the surgeons stitched this mesh sack around the omphalocele and every day they sinched it (in the middle) a little tighter, hoping that within 7-10 days the omphalocele would be pushed in and they could sew his abdomen muscles together to hold it. Viola! Though it didn't quite work that way for us. Wil's omphalocele was extremely large and with trying to fix it he was also a little swollen which made matters a little more difficult. They tried this method several times and every time within a few days it would tear. The following pictures are of the other silos. The plastic wrap next to the silo is covering up Wil's bladder which was exposed. Now you can see why Wil's little homemade bed was so important. He had to be flat on his back during all this. With all the hard work his doctors gave, unfortunately the silo's did not work, other means would have to be taken. By the way the Lord totally blessed us with the best surgeons! We are so fortunate!

2) custom made bed...

The pic on the top is what the nurses had to make so Wil could lie on his back. The pic on the bottom shows his back and his "shell" or "egg" that is filled with spinal fluid. It looks like an egg or I called him my turtle with a shell. Usually, spinal repairs are done as soon as possible but in Wil's case he had to wait for quite some time. His stomach (omphalocele) needed repaired first and nothing, concerning his stomach, went according to plan. Well, not the way we all would of liked it to at the time. It's all good now!

1) the beginning...

William Dahman Wigge

Born January 11, 2000 in Indianapolis, Indiana at University Hospital then transported to (by underground tunnels) the NICU at Riley Children's Hospital.

Bryan and I learned through a routine ultrasound around 4 1/2 - 5 mos. pregnancy that our child would be born with some birth defects. The only thing that the ultrasound could detect was spina bifida and either an omphalocele or gastroschisis. From that moment on we drove to University Hospital once a month for ultrasounds and started to prepare for a 'short' stay in Indianapolis.

Wil was born via c-section and immediately intubated and a plastic bag placed around his body. He was born with very rare and complicated birth defects. They are as follows: Omphalocele, Exstrophy of the Cloaca, Imperforate Anus, Spinal Defects (lipomyelocystocele) this is also known as the OEIS Complex. Here's a brief description of these birth defects, an omphalocele : A congenital herniation of viscera into the base of the umbilical cord. Also called exomphalos. In English: His liver and most of his intestines were on the outside of his body and only a thin, very thin clear sack was covering it. That is why the doctors immediatley placed in him a plastic bag. They didn't want any air or germs to make contact on his organs. He was also born with exstrophy of the cloaca: cloacal exstrophy consists of an open bladder and the rectum is not open in the normal location but rather communicates with the bladder. In English: his bladder and his sexual organs were split in two halves, and were short and flat. We only knew he was a boy from an earlier amniocenteses. Imperforate Anus: the anus has not been formed or perforated, and the colon communicates with the bladder. In English: Wil has a dimple where his rectum should be and because he doesn't have a sphincter muscle and is missing half of his colon, it really doesn't matter. Wil has an ileostomy, which is a surgerical construction of an artificial excretory opening through the abdominal wall into the ileum. In English: he 'poops' in a bag. Spinal Defects: Wil was born with a rare form of spina bifida called lipomyelocystocele which is a rare form of occult spinal dysraphism in which the hydromyelic caudal spinal cord and the subarachnoid space are herniated through a posterior spina bifida. In English his lower spine had a hole in it and his skin filled up with spinal fluid. Wil did not however have hydrocephalus, thank the Lord, we don't need to add any more.

Hopefully everyone reading this actually understood it. Wil is six years old now and sometimes I still get confused with the medical translation. I read his baby book now and there were so many things that I wrote down that were completely wrong. My definitions, spelling, surgeries, the list could go on. I hope after six years I'm starting to get the hang of it and can educate Wil on his body.

Please feel free to ask us any questions!