September 14, 2015 "Surgery #8"

Surgery #8-Inguinal orchiopexy, inguinal hernia repair and take down of penile adhesion.


Got up at 3am to begin the day. Rayden had his 8th surgery in 8 months! He was such a trooper. Even though he hadn't eaten since 8:30 last night, he still smiled at everyone he met this morning. Anesthesia took him away from us at 7:30am. Dr. Sherry Ross came to the waiting room around 10:00. She took Michael and I to a private room to discuss how the surgery went. There were three parts to this one surgery:

1-She started by saying it was much more difficult than she had anticipated. We were unaware that he had developed a super large hernia. Dr. Ross said it was the largest hernia repair she had ever seen! It may be due to him having a shunt she said. She placed both of her thumbs together (one on top of the other) as a visual for us to see how large it was. She said it gave her a really hard time making her use every trick in her book and every stitch she knew to correct it. Even after all of that, she's only 90% sure it will hold. It may have to be reevaluated laparoscopically with a mesh at a later date if it doesn't hold. An inguinal hernia occurs when a portion of the intestines protrudes through a weak point in the abdominal muscles. It isn't necessarily dangerous by itself. It doesn't get better or go away on its own, however, and it can lead to life-threatening complications.

2-Then she discussed the actual testicle. Although she couldn't stretch the blood vessels and cords far enough down, she believes it is still viable and far enough for now. She's not sure if the testicle is damaged or not because it is much smaller than the other one. She's not going to go back in to correct it unless it's absolutely necessary. Of course, he will be monitored closely. I pray it heals up and grows perfectly. There are two main complications when a testicle is not located in the proper place; testicular cancer and fertility problems. We are trying to minimize Rayden's struggles. He has enough to fight!

3-Lastly she fixed Rayden's circumcision. He had a skin bridge and some adhesions.

The recovery room nurse couldn't seem to calm Rayden down so she called for me. She had already given him tylenol and fentanyl. Rayden was in so much pain. He was swollen and crying so pitiful with his lip quivering. The nurse wanted me to change his diaper right away. I almost passed out when I saw the two purple incisions and all the huge swelling! (I would post pics, but it's private!) Although Dr. Ross told me to expect it, I still wasn't prepared. I tried to give him a bottle but he wouldn't swallow because his throat always hurts after surgery due to the breathing tube. He fell asleep in my arms. I sat and rocked him for about half an hour. Although only one parent is allowed in the recovery room at a time, the nurse realized his Daddy hadn't seen him yet so she allowed Michael to come in and kiss Rayden for a minute. We went to another room where Rayden drank his bottle and woke up more. Around 12:00 we were able to go home.

Rayden was in so much pain. He wouldn't let me put him down. He would just lie in my arms and yell out in pain every ten seconds or so. I barely touched his belly to fasten the diaper and he screamed. When I lifted his leg just a tiny bit he would wail in pain! He cried enormous crocodile tears most of the evening! He didn't eat any baby food all day but he drank most of his bottles. Michael and I gave him some Motrin and Oxycodone and he drifted off to sleep about 9pm. He was up and down all night.

He normally bounces back pretty quickly so I don't expect this to last.

September 3, 2015 "Teeth"

At 8 mo. old, Rayden loves to chew on everything and has been slobbering for quite some time. Michael gave him some Crazy Bread from Little Caesars to suck on Tuesday night. When he actually got a piece off I noticed he had one little tooth on the bottom that had erupted through the gum. His First Tooth!!! I noticed there was a hole right beside it so another tooth was on the way. Only two days later, Thursday, Michael gave him another piece of Crazy Bread. VOILA!, out popped tooth number 2!

September 10, 2015 "D-day (Diagnosis Day)!"

D-day! 

Most people remember "D-day" as when the troops stormed the beaches of Normandy in World War II. But parents of children with Spina Bifida remember it as a different battle day, the day our children were diagnosed. 

I will never forget that day...September 10, 2014. We went in for a routine, 18 week anatomy ultrasound. I can still hear the doctor saying "I'm sorry. We see signs of Spina Bifida." I didn't even know what it was!!! The doctor used words like: neural tube defect, spinal nerves outside of body, may never walk, clubbed feet, paralysis, hydrocephalus, chiari malformation, brain damage, no bladder or bowel control... Followed by the awful choices of termination, fetal surgery, or surgery immediately after birth. Michael and I were in such shock and disbelief.

After reading the pamphlets given to me from the doctor and some research on-line I was in such fear for our unborn son. How much pain and suffering he would have to endure and how many challenges Spina Bifida would bring to our family. I could not believe God had given us this burden to carry. I remember asking God "WHY???" Begging Him to take these choices out of our hands. We honestly did not know what to do. Why would a loving God allow this to happen to an innocent child?

Although our house was filled with family and friends, I felt angry and alone. My heart was in a thousand pieces and I was on the edge of a complete break down. I thought I had my life all mapped out and then this 'MOUNTAIN' falls in the middle of the road. I had just accepted the fact that God had given me this baby for a reason and then I find out he was in trouble, facing unbelievable challenges. I just didn't understand, and to tell you the truth, I still don't. Just remembering that day is making my heart race, body shake, and tears flow. (This has got to be a form of PTSD)

The words of this song by Hilary Weeks are sooo perfect. "Broken-hearted I started climbing and at the top I found every fear, every doubt, all the pain I went through was the price that I paid to see this view. Now that I'm here I would never trade the grace that I feel and the faith that I find through the bittersweet tears and the sleepless nights. I used to pray He'd take it all away but instead it became a beautiful heartbreak."


We've definitely traveled a rocky path this past year. Rayden has had 7 surgeries in 6 months and there are more in his future. But as time has passed I've begun to understand a little more of God's intent. Just look at this precious angel...despite all the challenges and imperfections he was born with...he's absolutely perfect!

Rayden has the most gentle soul. When he smiles at you your heart will melt into a thousand pieces. His sweet laugh is infectious making everyone that hears him laugh along with him. He spreads pure joy to everyone he comes in contact with. I could not be more proud to be his mother. Thank you God for placing this precious angel in my life and entrusting me with his care. 

August 23, 2015 "8 months old!"

Rayden is 8 months old!!!

Weight: 19.2 lbs.

*Rayden can sit up for about 45 seconds then he falls forward or to the side. If he falls forward he catches himself with his hands and will push back up. The problem here is he doesn't know when to stop, so he pushes himself all the way back! If no one is behind him he will hit his head on the floor. I'm sure it won't be long until he figures it all out. Here is a short video clip. It was very difficult to catch.





*He can roll over from back to belly and belly to back although he doesn't seem to want to anymore.

*He loves to hear anyone sneeze! It is the funniest thing to him. He laughs at Daddy doing ANYTHING!!!!

*Rayden has been eating baby food for a while now, but Daddy wants to let him try all kinds of new things. Of course, he is very careful not to let him get anything in his mouth, he just lets him suck on things. He gave him a dill pickle to suck on in a restaurant and Rayden LOVED it! He gave him steak today! This boy CRIED when he took it away! I see trouble in our future!!



*He found his toes and loves to put them in his mouth! It looks painful but it reminds me of how he was positioned in the womb. I thought he was going to be born folded in half! Here is a short video clip:

*I love the way he goes to sleep at night all by himself. We just give him kisses, and lay him in his crib. We found the most awesome mobile at Buy Buy Baby. It resembles a ceiling fan (which Rayden adores), plays music, and shines stars on the ceiling. After we lay him down he just watches it until he drifts off to sleep. Most precious moment!! Here is a short video clip:

*He can hold his own bottle now thanks to the itsy grip that Michelle Willis, Occupational Therapist, brought him.