14) The longest day ever...

The day had come! Wil's 'big' surgery was finally here, May of 2001. We were nervous about the surgery yet excited at the possibilities that lay ahead. The pictures below show what Wil looked like before surgery. Remember 'the beginning' pictures when the doctors had to put skin grafts over Wil's abdomen. The left pic is that skin. The right pic shows his bladder and urethra. The bladder is split in two and the urethra is in the middle and looks like a flat tongue. There is a dimple where his rectum should be. At this time Wil had still never had a bath, well, he had never been submerged into water (bathtubs, swimming, etc.). We had to be careful that nothing came in contact with his bladder. It was always nerve racking when his ostomy bag leaked. Also at this time Wil still could not move by himself. He was unable to crawl and rolling was difficult. It was hard to believe that he was a year and half old. His mobility was delayed by his severe hip displasia. If you look at the pics below you can see how his hips lay out. At the time it was impossible to close his legs (leg to leg could not touch). I remember right before the surgery Saige was worried that they were going to take his legs and not give them back so the nurses let him mark both of Wil's feet with a marker so when the surgery was over he would be able to tell that the legs were still Wil's. It was cute!


The surgery went well, it lasted about 14 hours (if memory serves correctly). I just remember that it started in the early morning and he wasn't in ICU until about 10 that night. It was one of the longest days we've ever had. The orthopedic surgeon said that Wil would have to be in traction for at least 3 - 4 weeks. (they cut his hips apart and realigned them). The doctors did not want any movement from Wil because they wanted his hips to heal correctly, they had him paralyzed and sedated for the 3-4 weeks. Unfortunately, because of the medications he was on plus the surgery he was very swollen (water retention) and doubled in size. The nurses tried to rotate his head but unfortunately either the first few days of recovery or while the surgery was going on Wil had gotten a bed sore on the back of his head. It took months to heal and to this day he has a scar a little bit bigger than a half dollar and no hair in that area. Just a little souvenir from that day. The picture below is a pic of Wil in traction. The had his legs hanging as close to a 90 degree angle as possible. His stomach situation made it difficult to actually be at 90 degrees but they did what they were able to do with what they were given.
The top picture below is showing Wil's stomach. The surgeons had to apply the skin graft again to heal over his abdomen. I remember the plastic surgeon saying we've done this surgery twice now at this hospital and both times have been on Wil. The bottom pic show that his bladder is now closed up. They put the bladder together as well as the urethra. They had a catheter in at the time.

During this time I was once again seperated from Bryan and Saige. I was staying at the Ronald McDonald house again. I'm so thankful for that place. Anyway, I found out that we were pregnant. It was not a planned pregnancy and I was terrified of having to take care of Wil and a newborn and even more terrified that this baby could have some problems too. The timing (for me) was not good, I cried the night I found out and the next day called Bryan, he was really quiet. We both were terrified of anymore responsibility and the possibility of having to go through all of this again or just going through all of this with a newborn. It took a few weeks to adjust and to respond to the situation the right way, the way we should of at first, just trust in the Lord. Easy as it sounds it's one of the most difficult things to do. After several weeks Wil was able to come out of his medicated 'coma'. It took another three weeks to fully recover to come home. We spent Saige's fourth birthday in Indy this summer. We took him to the Indianapolis zoo and the next day we found a Chuckee Cheese and then went to Dairy Queen for an ice cream cake. My brother had his second child (Mason) while we were in the hospital too. It was a very eventful summer. We were all so happy to come home!

13) Prepping for surgery. . .

The family photo above was taken about a month before Wil's surgery. Little did I know but in that picture I was pregnant with our third son Asher.
The photo above was the first photo we ever had taken without Wil's NG tube in. I remember being in the parking lot and while I held Wil, Bryan pulled his tube out. This of course is uncomfortable and Wil began crying, we were hoping that he would calm down and not look as though he were crying for the pictures. As you can see, he didn't cry for long, the pictures turned out great!



Prepping Wil's next surgery was difficult for me. Wil was a year and a half old and I felt for the first time that our lives were somewhat normal. I so badly did not want to go back to Indy and have another extended stay and separation from Saige and Bryan. I also did not want to see Wil in the hospital again! I realize it was and is inevitable for Wil to be hospitalized but regardless it is something that I don't particularly like. They told us to plan on staying for 6-8 weeks, I planned for 8-12 weeks and tried not to hold my breath! I knew that this surgery would be one of the most grueling surgeries as of yet and several of his surgeons would need to be involved, general surgery, orthopedics, urology, and plastic surgery. I knew that they were going to put his bladder together, try and fix his urethra, cut through his upper leg and rotate his hips in (to minimize the hip displasia that he has), and to see if they could get any more of his stomach in. I also knew that they wanted Wil to be immobile for 3-4 weeks while they had him traction. I didn't really know what to expect, the story of our lives! I did, though, feel like I was walking into this surgery with a little more understanding and confidence. Confidence with myself, confidence that I did know what Wil needed, and I was confident to be his voice. I also had a lot more understanding of what the surgeons were talking about(medically speaking), more understanding of what the hospital staff goes through, and definitely how recovery may go. (day by day)

12) The end of the first year . . .

Wil was unable to sit up by himself and he couldn't crawl either. He spent a lot time either like the pic below or with pillows supporting him or in his 'saucer'( similar to a walker). Anytime Wil needed to move or change positions we needed to do it for him and of course we needed to move his feeding pump as well. We also had him sleep in the same position as below, because of his constant vomiting . ( so he wouldn't choke on it)

Saige and Wil Christmas morning.(2000) Wil was beginning to balance well while sitting up. We found this quite miraculous considering he didn't have any abdominal muscles. Saige was three and Wil was just about ready to turn one.



After Wil's last extended stay at Riley he was hospitalized a few times at a local hospital for dehydration. Wil vomited about every day. He has acid reflex and at the time a very sensitive gag reflex. He was only being fed through his NG tube (nasal gastric) and was not eating orally yet. If Wil would vomit too much within a day we would start to see 'warning signs' and would usually place pedialyte into his tube instead peptamin jr. and would switch the rate at which he was normally fed. Most of the time we were able to catch the dehydration but there were several times that he needed to be admitted into a hospital. Wil was also on a continuous feed from the time we brought him home, 30 cc(1 ounce) every hour, 24 hours a day. Every few hours we would have to add more food to his tube so it would not go bad (especially in the summer). I was very sleep deprived. Around that time I remember wondering if things would get easier or if they were going to stay this way. I never once was prepared for the long haul. In my weak mind I thought that this (Wil's problems) would be temporary and after a few months everything would be normal. Needless to say that year (the year 2000) depression started to run my life. It started right before I became pregnant with Wil, escalated during the pregnancy and by the time he was a year old I was suffering from depression. I never acknowledged it until a few years later and didn't try to get any help until a few years after that. My depression is another story and most of it is rather depressing ~ ha ha! Some day I'll write about that!
Anyway, things seemed to be getting better and there was more time in between each hospital stay. It felt good to have Wil home!

As I look back reflecting on the first year I can say that I am so happy to be done with it. It was probably one of the most difficult years in my life. As difficult as it was, I did learn a lot and I know that it has made me a stronger woman. I know as a christian that the enemy (satan) only wants to rob, steal, and destroy. His efforts to rob Wil of his life, steal Saige's childhood, and destroy our marriage and family did not go unnoticed. I will always claim victory in Jesus that Wil is alive, Saige is not dysfunctional, and our marriage is stronger than ever. It's so easy to see how people are destroyed through this. How easily it is for satan to shred people into pieces. I have no clue of what the future holds and I don't know what to expect with Wil's health or for that with my other two children or Bryan or even myself. I do know that I wouldn't of made it this far if it wasn't for God's grace and mercy. Through Him all things are possible, through Him I have my peace, and through Him I have my hope. A verse that I have carried with me for years is Romans 5:1-5 'Therefore since we have justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance: perseverance, character, and character, hope. And hope does not disappoint us, because God had poured out his love into our hearts by the Holy Spirit, whom he has given us.'