Saturday, December 29, 2012

We Wish You a Merry Christmas and a Happy New Year!

Posing on Christmas Morning!

We have had a little bit of excitement this month!

Besides Finnegan's First Christmas, we also moved in to our first home, and had a baby hospital stay.

Right after being admitted.
Shortly after the last post, we got results from Finnegan's EEG and met with his neurologist. The EEG showed no signs of seizure activity (!!!) and the doctor adjusted his medication to slowly wean him off of the phenobarb. After that amazing news, Finnegan started coughing and had quite a runny nose. Ian took him to the doctor and we were told (as always) to just watch out for breathing because RSV was making its rounds in the area. Now, Finnegan had already been receiving monthly shots of Synagis which is designed to lessen any symptoms of RSV if he were to get it. Well, Finn surprised us all on Saturday when Ian took him back into the doctor's office: he tested positive for RSV. After a breathing treatment in the office, they gave us several options for treatment. Since his symptoms were not too severe in the realm of RSV, they left it up to us. We decided to take him down to the Children's Hospital in Peoria as a just in case. Because he was stable and breathing easily, they let us take him.
Finn and Mommy watching Tangled together.

When we got there, they told us that since RSV is SUPER contagious, we had to either wear protective garb (mask, gloves, and gown) 24/7 or stay in his room and only leave to go to the cafeteria or to go home. All visitors, doctors, and nurses also had to "garb up" before entering the room. He was super content the whole time. They said that since his symptoms weren't severe, he was simply admitted because of his medical history and as a precaution.

They said the only treatment they would give him (unless his symptoms worsened) was nose suctioning using a bulb suction and saline solution. He liked it more than most babies, but, as you can imagine, he didn't like it too much!

Finn after they told us we could go home!
We had a minor issue that evening with nurses being overbooked and not taking care of our little munchkin like they should have, but then again we knew that he wasn't as severe as the other babies on the floor with RSV. The next morning, they told us we could go home without a problem. We were told that we would need to continue suctioning out his nose to keep his airway clear and that he was a lucky little boy for not having more severe symptoms, since some babies do die from RSV. We thanked God that Finn was given the opportunity to receive Synagis! Even though getting the shot is painful for our little guy, it worked!

Another follow-up appointment with Dr. Emm a couple days later was very positive. He received another flu shot (his second) to help protect him from getting the flu... let's pray that doesn't happen! The doctor was a bit more concerned about his head shape, so he wants us to go back in to see his neurosurgeon (Dr. Lin) sooner than we had originally planned on seeing him. It is possible that Dr. Lin may suggest Finnegan get a helmet to help reshape his head. In the meantime, we are working to move his head often.

We were happy that Finn was feeling better, but we still had a lot of work to do on the house! Our moving day was scheduled for December 15th (Ian's birthday no less), so we had a LOT to do before that day!

The week of the 15th, I had to work and was not able to take off any days (because if I don't work, I don't get paid), so Ian did a lot of the running around, packing, etc. He did a great job with the help of his dad and brother! When I came home from work Friday afternoon, I was shocked by how much was already done! My dad came and one of Ian's coworkers and Pat also came to help move the "stuff" into the house. We had stuff EVERYWHERE, and we had to make sure the master bedroom and dining room was empty so that the drywall guys could come in to finish the walls on Monday. We were able to get it all done, surprisingly!

It took the guys only a couple days to get the walls done. In the meantime, we got the bathroom finished (we just have to clean up some of the wood from paint drippings) and got a lot more electrical work put together (our dads are awesome!). Finnegan has been suck a little trooper through this whole process! On our move-in day/evening, he slept the WHOLE time. What an awesome little boy!

With his RSV, he had a little bit of a break from therapy since the therapists wanted him to recover, and they didn't want to spread more RSV germs. The Thursday before Christmas his occupational therapist came to his sitter's house to work with him. She said she was quite impressed with his progress, especially since he had been sick. We have been working with him on sitting up and gaining more head control. We also have worked on hand-eye coordination and oral stimulation. He's slowly coming around! :)

Christmas came and went. It was such a magical time for us to see Finnegan with his family and enjoying all the Christmas lights (well... he was actually more partial to the ceiling fans)! Here are some of our favorite moments from Christmas 2012!

After Christmas, we went back to work on the house. We spent a lot of time cleaning off the dust from the walls from the drywall dust so they would be ready to prime, paint, and move into...officially. We finally agreed on paint colors, so the next step is painting, putting up the trim, hanging the draperies, and moving in that furniture! We'll get to staining that trim a little later.

Thursday, Finn had an appointment with his occupational therapist. She was really impressed with his progress! Now, he can sit up with just some support on his midsection (right under the ribcage). He rolled over with help and even started picking his head up on his tummy!

Last night, while we were playing, I put Finn on his belly. As soon as I let him go, he put his arms up and pushed off from the ground. He held himself up! He did have quite an incentive...I was holding a mirror up to him. He for sure likes himself! he could be screaming his head off, and if I show him a picture of himself or give him a mirror to look at, he is automatically mesmerized!

We're exploring the world of baby food slowly but surely. He seems to tolerate peas, hate oatmeal, and LOVE applesauce. We'll be trying some green beans next! He's a VERY happy baby. He's pretty consistently giggling, smiling, and eating his hands. He's also exploring his vocal range. ;)

Even though this year has brought us the most amazing gift, it has also brought about some amazing hardships. I'm looking forward to the new year and praying that it brings more stability and good health for all of us!

Thank you for all of your support this year. I cannot imagine how we could have made it through this year without this blog and without the support of all of you reading it. I have started following a couple other families on their journey in the NICU on Facebook, and as I read through status updates, I cannot help but take a deep breath, close my eyes, say a prayer, and hug my little dude. Every Sunday, I pray for families in the NICU and the doctors and nurses taking care of them. I know those prayers are what kept Ian and I sane and kept our little guy safe, so I guess it's the least I can do.

As I sit writing this from the living room of our new home, I couldn't feel more at peace. Even though I'm still not fully employed and there are a lot of unknowns ahead, things have started to calm down a bit. It's hard to feel anything but peaceful when I look over and see my mighty Finnegan snoozing in his swing with his little pudgy fingers on top of his knees, his little lips pouting out, and his little butt chin just being SUPER adorable. What a blessing.

From our family to yours: We wish you a happy, healthy, and blessed 2013!

Monday, December 3, 2012

Giving Thanks...

Life has been SO busy! The best part is that it all involves GOOD things. I worry about jinxing myself, but I'm SO thankful for a streak of good news!

Play, play, pass out!
Since our last post, we have closed on a home, began renovations and slowly fixing it up, I have started working my second maternity leave at the high school, and Finnegan has been flourishing.

Most importantly, Finnegan has been doing REALLY well. He received his 6 month shots and his first flu shot before Thanksgiving. To help remedy the frequent puking, Dr. Emm put him on Prevacid. Finnegan is happy because he gets his Prevacid with applesauce! Finnegan began to get used to his biweekly blood draws at the lab. The receptionists and nurses all knew me by my face, so I just had to wave and we would be checked in. The nurses looked forward to every Monday and Thursday when they would get to see Finnegan. The last two blood draws, he even giggled throughout the entire thing, the stick, draw and everything! The only time he cried was when I put them in the car seat. The nurses were just in awe of him! The best news came after his last blood draw last Thursday: Finn's CBC results had been awesome and his platelet counts had been trending in the right area, so we could discontinue labs for a couple weeks. They want us to go back for one more blood draw then to determine if he even needs any more!

Finnegan has another appointment with Dr. Emm in a couple weeks. At that appointment he will get the order for his followup immunology tests. Last week Finn had a followup EEG. Still waiting on results.

Today Finnegan went for a followup appointment with his neurosurgeon and had another MRI. Dr. Lin was SUPER happy with Finn's improvement. All the excess axial fluid had been resolved, so the shunt is doing what it needs to! The size of his ventricles is still a bit big, but the doctor thinks it might be his new baseline. He'll go back in March. On Thursday he goes back to see his regular neurologist, Dr. Taft.

He sees his physical and developmental therapists once a week. They are also so impressed with Finn. He still has a lot of work to do to catch up physically and developmentally, but he's already made so much progress! He is looking up, tracking toys and people as they move across the room, smiling when we talk to him, eating his hands, rubbing his eyes, giggling at toys/mobile when he sees them, and keeping his head up better. He still struggles with tummy time. The physical therapist has provided a wedge that puts him at an angle so he doesn't have all the gravity working against him. I am just so impressed with him. His is my inspiration.

In house news, we are slowly making improvements to make this house an amazing home. Our family is such an amazing help in all of this. I am astonished at all their talents and their graciousness. We have a bunch of projects in the works, and it's crazy being in between houses constantly, but it will all be worth it in the end! It helps that Finnegan is a little trooper and just goes with the flow (most of the time!).

I started my second maternity leave at the high school last week. By the end of this year, I will have taught almost every English class at Bloomington High School! After over 75 jobs applied to since May, I have my first SECOND interview this week. I am super excited for this interview and even more excited about the job itself. Keep your fingers crossed for me and our family! :)

Thursday, November 15, 2012

Regaining Strength

Since our last post, Finnegan has been on the mend. We've definitely had our set backs, but this morning Finnegan's shining smile and adorable little giggles reassured me that it will all be okay!

Last Friday Grandma and Grandpa Bruckner came over. We had a nice dinner, played Uno, entertained Finn, and overall had a great evening. It was hard to believe that it was already a week ago that Finn had his surgery.

This weekend Finnegan started to vomit while eating. This isn't your typical spit-up. We're talking projectile, large amounts of formula pukiness. AKA: No fun. He decided to throw up a couple times over the weekend, but he was still eating very very well. He also began doing this little wheezing sound whenever he would inhale, so we decided we'd talk to the doctor about it on Monday.

He had a scheduled appointment with his pediatrician on Monday. Here, Dr. Emm said he was pretty sure Finn had some sort of reflux going on, but didn't want to put him on medication for it until it looked like he really needed it. During that appointment we also found out Finnegan was gaining weight the way he needed to (he was up to 12 pounds 12 ounces...up 12 ounces from last week!). The doctor suggested we get him in to see his ENT to see what is going on with his vocal chords because of the stridor (squeaking noise during inhalation). He was assuming there was some sort of damage from the many attempts at intubation. Monday also meant Finnegan gets another blood draw. He was a lot more angry during this one than previous ones.
Monday evening he threw up two more times. The one time included throwing up his seizure medications.
Tuesday we went to see the ENT. They put a scope down his nose to check his vocal chords. Yeah, he wasn't too happy about that. The doctor said his vocal chords looked great (like we were surprised to hear that one), but he did show signs of moderate laryngomalacia which is literally translated as "soft larynx". What this means is that cartilage of the upper larynx is soft and immature (a word we are used to hearing when talking about Finnegan) and it collapses inward when he breathes in which causes a slight airway obstruction. This part of the larynx above the vocal chords which explains the high pitched squeaking we were hearing when he would inhale. This also can explain some of his feeding difficulties. His ENT said there really wouldn't be anything we should do for him because it is a mild case and almost all kiddos grow out of it by 1-2 years of age.

Tuesday Finnegan was a trouble-maker. He wasn't a happy boy at all. While I was tutoring Tuesday evening, Finn puked on Daddy for the first time. Needless to say, daddy was not happy, and both of us were concerned. After I got home Ian went to bed and I got Finn ready for bed and gave him his bedtime bottle and medicine. After I gave him his medicine, I set him down on my lap to get his burp cloth under his chin. He was looking away from me with his head faced outwards. As I went to turn his head toward me to tuck in the burp cloth, I noticed his neck was stiff and his eyes were fluttering. When I felt the rest of his body it was rigid as well. All signs pointed to a seizure. I put my hands on either side of his cheeks and tried to calm him. He turned his head and looked at me about 15 seconds later. I'm still not sure if it was a seizure or just Finnegan being stubborn, but either way I was a little panicked. Once he ate a little bit of his bottle, he started coughing. At first I just thought he took too much formula in at once so I sat him up a bit more and patted him on the back. A little spit up came out, so I wiped his mouth and realized that he still hadn't taken a breath in. His face turned bright red. I quickly went into mommy panic mode, but put him over my arm and hit his back as they taught us to in CPR class. He quickly began puking everywhere and took a big breath in. At this point, I knew I would not be sleeping. After my heart went back into my chest and Finnegan calmed down, I started puke clean up. Finn got a nice bath and snuggled up next to mommy. I sat him in his bouncy and took him into the bathroom while I took a shower. I didn't want to let him out of my sight. I sat up reading for a while and got up at every noise Finn made. At 1:30 am I got him a bottle and fed him without a problem. I relaxed a little but still went to check on him about every hour or so as my body would wake up or react to his noises. At 5am he woke Ian and I up coughing. It started out very dry and "barky" and then throughout the morning became a bit more "junky" and more frequent.

I eventually got through to his pediatrician's office and told them about the vomiting and the coughing and they said they'd talk to the doctor and get back to me. In the meantime, Finnegan had his Early Intervention Services Assessment for Developmental Therapy and Physical Therapy. This is also where they recommended any other services. Without much surprise, Finn is delayed. His Physical Therapist said that he is exhibiting the physical behaviors of a 1 month old, but it showing signs of older development (grabbing, holding onto things, bringing hands together). As we stretch him and loosen the joints and muscles, he should hopefully get back to normal. His Developmental Therapist also said he's delayed, but the fact he is attentive to noises, tracks a little (mostly just when he wants to), makes the consonant vowel sound of "ma", and can be soothed is a good sign. His plan for direct services from Early Intervention includes Physical Therapy and Developmental Therapy once a week. His DT will work with us and show us activities that we can do with him to stimulate his development. His PT will obviously work with us on positionings that will prevent him from getting too tight and obviously stretches. He will meet with an Occupational Therapist tomorrow to evaluate what services she thinks Finn needs. He will also meet with a Speech/Feeding Therapist in December to evaluate his needs in that area as well. So, on top of the four therapists, Finnegan has a case manager through Early Intervention, a Family Case Manager through the Health Department, and a Case Manager from the Insurance Company. All of them are female, and I ask Finnegan all the time how he gets all the ladies. When I asked him that yesterday while his Early Intervention team was here, he just smiled. ;)
Eventually, I heard back from the doctor's office. I insisted on having him come in because he cough was getting worse and he was having a hard time staying asleep because of it. At the doctor's office, we talked about breathing and what to look for again (which we were monitoring, but that cough was still bad). Since his cough was mix of dry and congested, the doctor decided to give him a steroid since croup is going around in the area. He also decided to put him on Prilosec and a different formula since the Enfamil AR wasn't cutting it. He's now on Enfamil Gentlease and he gets Prilosec every evening with some applesauce. As of last night, that was a hit! The doctor told me that if he throws up the steroids, to come back in for a shot of the steroid instead. Surprise surprise, Finnegan threw up his steroid. So, not even 2 hours after leaving the office, we went back so Finn could get a shot. My poor baby.

I went to tutor that evening and worried about Finn the entire time. I relaxed a little when Ian messaged me and said he was sleeping. He hadn't done much of that all day, so I was glad he was getting some rest. When I got home, Finn was still sleeping. After a while we woke him up to give him his medication and get him ready for bed. Ian set up the cool steam humidifier/vaporizer and I rubbed some baby vapo-rub on his neck. I was up with him a little bit throughout the night, but as his coughing subsided, mommy relaxed and slept a little bit.

When I woke up with him this morning, he was all smiles and giggles. It was a relief to see my little boy back to himself. He was still coughing a bit, but nothing like yesterday. He stayed up with me most of the morning, playing on his activity mat nearly rolling over and then sitting in his swing smiling at the birdies going around.
He finally fell asleep for a nap right as I was getting ready to take him for his blood draw. Of course! ;)
Next week he will go for his 6-month vaccinations (even though next week he will be 7 months already... hard to believe). Then, 4-6 weeks after those vaccinations they will repeat his immunological tests to see how his antibodies look. If they are still low, he will most likely be referred to an immunologist in Chicago.
This week was a challenge for another reason. After over 6 months of ups and downs, our new family will close on our first home tomorrow. I spent the week organizing homeowners insurance, switching over utilities, getting miscellaneous paperwork into the bank, and otherwise trying to make sense of all this craziness that goes with home-ownership. Since I spent most of the time worried about Finn, the fact that we are going to own a home (with the bank, of course) tomorrow it didn't hit me until I was on the phone with the City Hall getting our water bill transferred. She said that trash pickup was on Thursdays and to let her know if we didn't have a garbage can or recycling bin. I had a butterfly flutter in my tummy when I thought about having our garbage picked up at the curb. I was excited when I realized we got our own garbage can. It seriously must be the little things.

After quite the year, we are hoping that everything ends on a positive note with Finnegan and our new home. As Finn's pediatrician said, "You can't have any worse luck than you already have." ;)

Friday, November 9, 2012

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.

Illustration of a shunt system

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 hydroceleDuring 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 ( 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! ;)