Happy Homecoming!

Thank you for all the prayers. Finnegan's surgery took about half the amount of time they allotted him for. He had a Ventriculo-Peritoneal Shunt (VP Shunt) inserted at about 11:10am on Thursday. At 11:50am, Ian called me at school to tell me the surgery was over. He has three incisions, all on his right side. His surgery was a little different than the picture shown below because Finnegan had two pockets of fluid pooling, one i his ventricle and one outside of the brain. This required the surgeons to add what is called a Y connector to the shunt. Let's break it down: Both incisions are about an inch away from his ear. The first is right behind his hairline and holds the valve and tube that goes to his brain in place (just as you see below). This tube drains the ventricles and goes through the valve. The Y connector is attached with the incision at the back of his head, and that connector allows for the draining of the extra axial fluid, bypassing the valve and joining the final tube that goes down to his belly. The last incision is to the right of his belly button right at his diaperline. This is a picture of the typical VP Shunt, but Finnegan's looks a little bit different. They were alternative giving him Tylenol, Motrin, and Tylenol 3 to help with the pain, but he was down to just Tylenol by Friday.

http://www.mayoclinic.com/health/hydrocephalus/DS00393

Finnegan after his surgery.

It's going to take a couple weeks for his eye motion to go more back to normal. He's still looking down a lot and arching his neck so he can see a little bit more, but Ian has found that if we touch his nose or cover his eyes a bit he "resets" and looks back to even. Ian calls it his "reset" button. :) It is definitely possible that he won't ever be able to look up. He hadn't looked up since before this whole ordeal, but as the days go on he is slowly improving.

Cousin Kaylin likes pie! :)

Friday was my last day of my 9 week maternity leave gig. After the last three weeks of commuting to and from Peoria after school, I was ready for a break. Aunt Jenny and Cousin Kaylin came to visit again, and Finnegan spent his last night in the hospital. Aunt Jenny, Kaylin,

It felt like forever to get him discharged. The doctors came in to round and ordered his discharge. Finnegan just hung out, while daddy paced the room and hallway after taking a couple trips to pack the car. Hours later, everything came through and Finnegan was ready to go home. I gave the stinky boy a "bath" while we waited. Hours later, everything was in order, and Finnegan was ready to go home. Before packing him in his car seat, we stopped on the 3rd floor to say goodbye to his girlfriend Brittany in the NICU. We also got to see a couple of his former NICU nurses as well. Finn gave Brittany some happy birthday snuggles, and we put our little guy in his car seat for the first time in 3 weeks. I know it seems silly, but that was quite a moment. It was even stronger when we got to finally drive out of that parking garage with our little dude grunting and squeaking in the back seat. I must have driven out of that parking garage over 30 times in the past 3 weeks, and each time I left with an empty heart and an empty back seat. Ian and I both smiled and took a big breath in and out when we drove out and Finnegan was making his cute little noises.



On the way home I tried to program into my phone all of his doctor's phone numbers and organized all of his appointments into our family calendar. Since I knew there were a lot of things I needed to do for him, I wanted to have all my ducks in a row come Monday. I knew I had to schedule his EEG, schedule an appointment with his pediatrician, and schedule his re-evaluation with Early Intervention (physical and developmental therapy).

My boys :)

He did well at home over the weekend. We gave him Tylenol to help with his pain and over the week the amount of Tylenol he has needed has gone down, so we know he is healing up rather well! We put him back in our room (he had been sleeping in his crib for a couple nights prior to his hospital stay) for the night and he slept like a champ. We lucked out with medications, since I was sure he would be on a lot more: he takes phenobarbytol and Keppra 2 times a day. He's quite a pro at taking those meds, although we have had a couple instances where the Tylenol went in and the Tylenol went right back out.
I was very concerned that he wasn't eating as much and when he would eat he would get very frustrated. The speech/feeding therapist at the hospital wanted to keep Finn on a slow-flow nipple for his bottles because he had to relearn how to suck, swallow, and breathe in order to eat. As he would get hungrier, he would get more frustrated because nothing was coming out fast enough. To feed him 4 ounces, it took around 40 minutes. Since Early Intervention is having trouble tracking down a speech/feeding therapist for Finn and we didn't know when he'd see one, Ian and I decided to try Finn on the medium-flow nipple to see what he would do. We pay close attention to his breathing and the sounds he makes to ensure that he's not aspirating (or taking milk into the lungs). He's been doing so well with his "regular" bottles. We've even been able to get him back to eating 5 ounces of formula (what he was eating prior to his hospital stay).

With all of Finnegan's appointments and preparing to close on our first home next week, this week was definitely busy. I was so thankful to have this break in between subbing assignments to help get Finn's strength back and to take him to all of the many appointments he has. At the end of the month he'll go in for another EEG and another MRI the beginning of next month. But, this is what this week looked like:

 
Monday: Finnegan had an early appointment with his pediatrician. He weighs 12 pounds even which is still under the weight he was before going into the hospital. Otherwise, his incisions look good and he should be set to get his 6 month vaccinations next week. Based on the immunological tests Dr. Gray did before Finnegan's discharge, Finnegan is producing all antibodies, but not enough. Depending on how another blood draw after his next vaccinations go, Finnegan may be given extra vaccinations and then referred to an immunologist in Chicago to help identify why his antibodies were so low (whether it's a hereditary condition or due to his prematurity). Afterwards, we waited for about an hour to get Finn's blood drawn for his bi-weekly CBCs. Finnegan and I then spent the majority of the afternoon making phone calls and attempting to reorganize our lives. Finnegan decided to surprise us this week with a new trend...complete crankiness at around 3pm until around bedtime. There are little intermittent naps throughout, but nothing substantial. Our poor little pumpkin has just been through so much. I went back to tutoring this week (Tuesday-Thursday), so Ian got to deal with the majority of the Finnegan Irish Temper.

Tuesday Finnegan and I voted and ran around to do errands to get all of the paperwork in order for the bank so we can close on our first home next week! We're quite overwhelmed and it feels extremely surreal, but we are so anxious to begin that next chapter in our lives!

Finnegan screamed from the minute we walked into the polling place..
I'm trying not to think too much into it. :)

Our home as long as the closing goes well! :)

Wednesday Finnegan had an appointment at the pediatric urologist. Prior to his hospital stay, his pediatrician noticed a possible hydrocele. During normal development, the testicles descend down a tube from the abdomen into the scrotum. Hydroceles occur when this tube does not close. Fluid drains from the abdomen through the open tube. The hydrocele becomes a problem with the fluid gets trapped in the scrotum (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001546/). Finnegan simply has fluid that moves from his abdomen to scrotum freely. The urologist said he doesn't want to rush into surgery with him (mostly because he doesn't need it now), but as he starts becoming more active, it is possible for the fluid to build up in the scrotum and become trapped. This causes the scrotum to swell and then develops a need for surgery. Since he is still rather immobile, the possibilities of him straining and blocking the canal is very minimal. We will come back in 3 months for another check-up and were told all the warning signs to look for in case the unlikely happened.

Yup, it's all back to normal!

From there, we ran a couple more house errands before coming home and hanging out with Grandma Doman for a couple of hours. Finnegan soaked up the grandma love and grandma soaked up the Finnegan smiles. That evening Finnegan's Physical Therapist came to reevaluate him, but Finnegan was not being very cooperative. She decided to come back Thursday morning so she could get a better assessment of Finnegan's range of motion.

We started out Thursday morning with Physical Therapy. His PT said that Finnegan is most likely so reluctant to work with her because he had been messed around with by so many strangers for the past week, he was weary of anyone that he could not recognized. The more I thought about it, the more it made sense. Even though we're not 100% sure how much Finnegan can hear or how well he can interpret what he sees, he knows who his mommy and daddy are and when a "stranger" is messing with him, he calms as soon as mommy and daddy are there (as long as he's still not totally in pain or pissed). So, for the remainder of his PT assessment, I held him while she worked on his range of motion in his arms and legs. Next week his other therapists will come to discuss their plans for Finnegan. The PT already said she will recommend weekly visits to work with him on building strength in his joints (specifically in ankles, wrists, and hips) and building more muscles (specifically in neck and arms). She mentioned that he was behind for a 3 month old (corrected age) in physical development (not being able to hold himself up or pick head up), but he is bringing his hands together and clasping them, which is a developmental milestone. The PT suggested that as he heals from his shunt surgery and the fluid equalizes, his head won't be so heavy.

After PT, Finnegan helped mommy apply for jobs, and then we made our way to Finnegan's eye doctor appointment. It's always reassuring when you walk into the doctor's office and the nurse/receptionist says, "Are you sure you're supposed to be seeing Dr. So-and-so today?" Apparently, his appointment was scheduled, but no one seemed to know why he was there or have any of the background information about why the appointment was made. So, after waiting for over 30 minutes with a very active little boy in a waiting room full of people, we got to see the doctor. He even said he wasn't sure why they sent him there because it seemed as if all the problems with Finnegan's vision reside in the brain as his eyes all look perfectly healthy. I told the doctor I would rather like to know that his eyes are healthy than just assume it's in the brain, and he did he version of an exam to test for attentiveness to light. Bluntly put, Finnegan didn't pass. When the light was shined in Finn's eyes, his pupils contracted (well, kind of because his eyes were dilated), but he did not flinch or otherwise scrunch his eyes like most people do when light is shone directly into the eye. Moreover, when the light was moved side to side, Finnegan did not follow it or see to recognize that it was there. The eye doctor was the same one he had seen in the NICU, so he knew Finnegan, and felt bad that he couldn't give better answers or any answers. Finnegan sees his neurologist next month, so hopefully we can learn more then.


Afterwards, we went home and waited for the Home Healthcare nurse to come to administer Finnegan's first dose of Synagis (medication used to prevent RSV). He was approved for 5 doses of this monthly shot. It is quite an involved process which includes getting an accurate weight (he was up to 12.25 pounds), taking vitals before administering the shot, waiting 20 minutes, and then rechecking vitals. Finnegan is usually a champ when it comes to getting shots. He cries, but then seems to come right out of it. This shot was heartbreaking. Apparently the medication burns as it is injected. Finnegan screamed for 5 minutes. Everything I tried (hugging, bouncing, snuggling, pacifier, bottle, swaddle) didn't work. Little tears were streaming out of his eyes. I barely could hold it together. After everything this little guy has gone through, the one shot that will really help him from getting another life-threatening illness causes him so much pain. It's more than worth it if it means Finnegan stays healthy, but it was hard.

Today, Finnegan and I go for his second blood draw, clean up a doggy mess (yay carpet cleaning!) and getting ready for Grandma and Grandpa Bruckner to come over for dinner and snuggles. Let's just hope Finnegan's Temper doesn't sneak up before I have a chance to get everything else done! ;)