Picture post!

Finally home!

Well we have been discharged from the hospital. I am so happy to be home. As soon as we got home I passed out. I was so tired, and apparently Finn was too! He fell asleep on his own, in his crib. Something that has never happened before! Ethan and I were amazed. I am hoping this trend continues. I have found that Finn has become a little bit more independent since we have started the ACTH. As we speak he is laying on the floor talking to his toys...by himself. Also, the carseat has been a real issue for us. Finn usually cries bloody murder when he is in the car seat. Everyone used to tell me 'he will settle down eventually' but he never does. Every time I would drive home to see my parents, which is a 2 hour drive, he would cry the whole way. At first I would pull over and check him to make sure he wasn't wet or hungry but that was never the case. He just didn't like being in the car seat. When we drove home from the hospital yesterday, however, he sat in his carseat and did not make a peep. Just stared out the window and was a good boy. I am hoping and praying this is all related to the drugs. That he finally feels better and can gain a sense of independence.

Well I have filled everyone in about Finn's brain injury and the hurdles we are jumping through with that, but unfortunately Finn has other issues. Let me start at the beginning. Finn was born 9lbs. Definitely not a tiny baby. After he was born he did not eat for 8 hours. It didn't matter if it was breast or bottle. He just did not seem interested in eating. When we left the hospital he ended up weighing 8.6lbs. The doctors told us that he wanted to see Finn in a few days to do a weight check. When we went in again Finn weighed 8lbs. I could only get him to eat maybe an ounce at a time. After he finished an ounce he would be screaming, and it would take me about an hour to get him to settle down. I called the doctors office almost daily telling them my baby won't eat. Their only suggestion was 'maybe he has reflux, keep him up right and it should be ok'. I planned on breast feeding Finn, but he would never stay latched onto my nipple. I was so paranoid about him not eating enough that I switched to pumping. I thought he did better on the bottle, but still would only eat 1oz at a time. Finn was put on Xanax when he was about a month old. When that did not make a difference in his appetite they switched us to prevacid. When that still didn't work they wanted me to switch to a soy formula and keep him on the prevacid. Finn started eating about 2-3oz at a time then. He no longer was losing weight, but feeding time was definitely not the calm experience for either of us. At one of Finn's weight check appt I asked the doctor if we needed to see a GI specialist. He kind of brushed me off and said that since Finn was gaining weight (only a few ounces at a time) that he was doing ok. It wasn't until his 3 month check up that I demanded we see a GI specialist. Although I am a first time mom, I knew it was not right that the only time my baby cried was during a feeding! So we go referred to a GI specialist. They ordered an upper GI to be done on Finn and suggested that we switch to a special hypoallergenic formula called Elecare. It was a miracle. After the first bottle I already knew we solved the problem. Finn was allergic to milk and soy products. The upper GI came back negative so we knew that Finn would have to stay on Elecare. The only problem is that Elecare is very expensive, can only be ordered online, and is NOT covered by our insurance. But this was just something we had to do for Finn. Ever since then Finn has been thriving on Elecare. He is now over 16lbs. I sometimes beat myself up that it took me 3 months to demand something else be done about the feeding issue. For 3 months Finn was in pain every time he ate. But again, he is strong.


Next there is the eye issues. I have already mentioned that Finn's right eye was damaged during delivery. Although that was heart breaking to hear that he only had 50% vision in that eye, I told myself at least he has his left eye. Well when we learned of the stroke our eye doctor had some more news for us. Since the stroke was so severe it caused damage to his left eye. He ordered a special test to be done on Finn to determine just how much vision he had in both eyes. The results showed that he only has about 50% vision in the left eye and 50% in the right. He told us in reality his right eye had better vision than his left. Again I was crushed. If he would have never been injured during birth he would have had perfect vision in his right eye. The doctor said that Finn would need to get glasses and contacts so he has the best chance of strengthening his eyes. So every day I put contacts in my little baby's eyes. Something that was totally foreign to me since I have never had contacts before. This was another hit on our wallets. Special made baby contacts are not cheap and again not covered by our insurance. But again, it was something that had to be done to give Finn's eyes the best chance. I also have to patch his eyes a couple of hours a day to help strengthen his right eye. Just another thing that I feel guilty about. I should have been more forceful when I told the doctor NO when he wanted to use the forceps. But there is nothing I can do about it now.

I hate the hospital but Finn loves it.

Here are pictures of Finn this morning. I have never seen him this happy when he's not being held. The nurses and I think the ACTH is working and probably making him feel better.

A new hope

So far it appears that the ACTH injection has been doing its job. Finn has not had an infantile spasm since saturday night. The doctors say this is very promising. Ethan and I are trying to stay positive. This just has to work. It needs to work. Since Finn has been on the injection I have noticed a change in his demeanor, and I am not sure if it is related to the drug or if its the hospital crib he loves so much, but he has been able to be set down in his crib without crying. Usually Finn wants to be held 24/7. If try to set him down he freaks out. It doesn't matter if its a swing, bouncy seat, his play mat, or his crib. The kid just always needs human contact to feel safe. But since we have been in the hospital he has been loving his crib. I am sitting here using my laptop to update this blog and he has been sitting in his crib for the past 1.5 hours just cooing and smiling. I almost don't know what to do with myself. I havent been able to use my 2 hands together for the past 9 months! I hope this trend continues when we get discharged tomorrow! Today I have noticed his appetite increase. Usually Finn eats a 6oz bottle every 3 hours, but today he took a 9oz bottle!! He could use a few more pounds on his skinny little body so that part doesn't bother me. Other than those 2 things he is still the same old Finn.

So it looks like we will be discharged tomorrow. But first they want to do another CT scan just to get an updated look at his brain. I can't wait to go home. I have cabin fever so bad. But we will be back at the hospital next tuesday to do a swallow study. Apparently kids with extensive brain injuries like Finn have difficulty swallowing. He does fine on the bottle, but we have been having serious issues with solid foods. Finn is almost 9 months and he does not eat solids. I have seen him be successful at swallowing solids, but it takes a lot of mouth stimulation before he understands what he has to do. So hopefully these tests show positive results because if not than the doctor said we will need 'to find other alternatives to get nutrients in him'. I don't even want to have to deal with that. I am hopeful that if we continue to work closely with his occupational therapist we will get the hang of solid foods. I think Finn is smarter than the doctors are giving him credit for. I see changes in him every day. I see him learning. He actually looks at toys and reaches for them, smiles at them and grabs them. This might sound trivial to a parent with a 'normal' baby, but with the brain injury and on top of his vision problems this is huge progress.

Well Finn is just now starting to call for his mama. I will leave you with this cute little video.

A picture story of our recent hospital visit

All hooked up for the 24 hour EEG.

Finn has always kept a smile on his face. No one can dampen his spirit!

A parent should never have to stick their own child

Well today was the first of many days where Ethan and I have to give Finn his ACTH shot. It was the hardest thing I had to do. I cried. I actually cried more than Finn did. The first time I tried I chickened out half way thru and didn't push hard enough to break the skin. I had my mini freak out and then I sucked it up and did it. It was hard. But I know this is what is best for Finn. Ethan just gave Finn his 8:00pm shot and did wonderfully. He handled it so much better than me. Finn did great too. Didn't even cry. I can't stress enough how strong and brave this kid is. I don't know where he gets it. The nurses are also teaching me how to take Finn's blood pressure because I have to monitor it everyday since a side effect of ACTH is hypertension. I feel like I should go to nursing school! I'm giving shots, taking BP, testing urine and poop. God these 12 weeks are going to be long and hard. The things parents do for their kids. Of course I'm glad to do anything for my baby if will keep him healthy and safe. Tomorrow we should know for sure if we can be discharged of Tuesday. Here's hoping!

A Special Mother by Erma Bombeck

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth
Selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew."
"Forrest, Marjorie, daughter. Patron Saint, Celia."
"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally he passes a name to an angel and smiles. "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter?
That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she'll handle it."
"I watched her today.
She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of it's own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty,
prejudice--and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.
"A mirror will suffice."                 

Infantile Spasms...a little seizure with big consequences

In november I noticed Finn started to have these startle ticks, more often than I have ever seen before. They were constant. About 15 an hour every single day. Finn hated them. They made him so mad. They would scare him when he was playing, and they would wake him up when he was trying to fall asleep. Luckily we had a neurology appt at the end of novemeber and I was able to tell his doctor about them. He was puzzeled by what he witnessed. To be sure to rule out any seizures he scheduled an EEG for Finn the following day. We waited to hear back from the doctor, but did not get a phone call. The holidays came and went and still nothing. Finn continued to have these ticks. Then in the beginning of January Finn started doing a new kind of movement. It looked like he was ducking his head trying avoid something being thrown at him. He rolled his eyes when he did this head movement as well as lift his arms.

Above is a video of Finn doing these movements. My gut told me this is not normal and probably not good. I called my neurologist and got the answering service. It took me 3 weeks to finally get someone on the phone (very frustrating for a concerned parent) and they were able to get Finn in right away. I showed the video above to Finn's doctor and he said he was 97% sure that what he was seeing was infanile spasms and that these were 'not good'. He told us that kids who suffer from infantile spasms are likely to be developmentally delayed, and in Finn's case he could be even more delayed than what we were anticipating. Ethan and I were crushed. I was just starting to accept the fact that my kid will be delayed compared to other kids his age. That he might not talk until later in life, if he is even able to talk at all. Now I have to deal with a whole other set of issues.

The doctors were able to get Finn in for a 24 hour EEG the next day. While we were waiting for the results the neurologists talked to Ethan and I about our options to treat infantile spasms. They said that we need to treat them aggressively now in hopes to stop them right away. They gave us a choice of 3 different medications; ACTH, Topamax, and Vigabatrin. Vigabatrin has a side effect of causing irreversible vision loss. So Ethan and I immediatley ruled that medication out since Finn already has issues with his eyes. Topamax is the less severe of the 3, but it could take up to 6 weeks for it to start working. We ruled that out because 6 weeks is a long time for Finn to keep having seizures. We came to an agreement that we would try ACTH. The doctors said this was the most common and most successful treatment for infantile spasms. However, with big results come with big side effects. ACTH is essentially a steroid and has to be injected into Finn's thigh. Its a 12 week regimen. The first week he gets 2 shots a day, then week 2 he gets the shot daily, then the rest of the time he will be getting his shot every other day.Another down side was that Ethan and I had to be the one to give him his shots. UGH! I can't do this! There is a reason why I didn't want to be a nurse! I don't want to stick people with needles, let alone my poor little baby! But a parent will do anything that is best for their child.

24 hours later the neurologist came to tell us what the EEG concluded. Finn was in fact having infantile spasms. The good news was that they didn't look like they were occurring very often. Also, the ticks that he does all day every day are the startle reflex that newborn babies have. Finn just has not grown out of his yet, because of his brain damage but they are hopeful that he will just grow out of them. The doctors said that because of the frequency of his infantile spasms and the lack of brain he has that they are confident that the ACTH will be an effective treatment for him. We started him on the drug later that day.

So here we are. We checked in for what we thought was just a 24 hour hospital stay turned into a 6 day stay. The hospital can't discharge us until we get the steroid shots delivered to our house because you can't just stop giving steriods once you start them. And the whole weekend is the reason why we have to stay so long. So Finn and I have been having a grand old time at Children's. He is the strongest,bravest person I know. Even though he gets poked and prodded, woken up, and squeezed he still keeps a smile on his face.

He has had 4 ACTH shots so far. and so far so good. It is Sunday night and he has not had a seizure yet today. I am hoping this is continues. I feel like he deserves good news for once in his life. I just keep hoping and praying that this works. My son has already defied so many obstacles. He deserves better. He deserves the best. He is seriously my hero. Ethan, Finn,and I appreciate all the love and support that we have gotten from family and friends. We appreciate everything everyone as done for us and we love you all!

Our heartbreaking story begins

In September 2010 I found out I was pregnant. My husband, Ethan, and I could not have been happier. I did everything right during my pregnancy. I exercised everyday, I ate healthy (anyone who knows me know how much I loathe healthy food). I read everything I could get my hands on about caring for the fetus. We found out at 18 weeks that we were having a boy. Ethan and I could not have been more excited. At 23 weeks I started having hypertension problems and my urine showed I was leaking protein. Never a good sign especially for a woman who was only 23 weeks pregnant. I was admitted to the hospital for 3 days. Eventually my blood pressure came down on its own and I stopped leaking protein. No doctors could explain why this happened but no one thought much of it since my baby looked healthy and my health went back to normal.

Ethan and I had already planned on moving from Pittsburgh to Columbus. Now that my health was normal we made the move. My doctors in Pittsburgh did not think I would need to seek out a high risk doctor. So I picked the first practice I found that was close, and accepted my insurance. My first visit with the new doctor was a good one. My BP and urine were normal and I actually liked the doctors and nurses. All was going according to plan.

On May 31,2011 I was admitted to the hospital to have my water broke. I was 40 weeks and 2 days. We were so excited that this moment was finally here. We were going to get to meet our little baby boy. Labor was fine for me. I got my epidural, I was able to nap. All was good. Until I started to push. I pushed for 2.5 hours without any success. I heard my doctor tell the nurse 'call down and tell them to prep the OR'. Great I was going to need a csection. I was disappointed but didn't really care because I was just so exhausted from pushing. Then my doctor said that it looked like my son had enough room to come out but he was just wedged. He decided instead of a csection he was going to use the forceps. Even though I told him 'no' he used them anyway. My son was pulled from my body by his eye. He was born with his eye totally red and swollen. I didn't focus on it too much since I was so excited to meet my son. It was love at first sight. It wasn't until the next day where I realized his eye was a problem.

When the pediatrician examined Finnegan he thought he had a cataract in his right eye. They were able to get me into a pediatric ophthalmologist right away. I asked him if his eye damage could have been bc of the forceps and he told me no.

The ophthalmologist ruled out cataracts right away. He confirmed it was bc of the birth trauma that his eye was so swollen.

After a few weeks of steroid drops we went back to the ophthalmologist. He determined that the birth injury took 50% of Finn's vision in his right eye. I was crushed. I felt so guilty...then the doctor told me that he wanted to put Finn under anathesia bc he thought he saw something on Finn's eye that concerned him.

Finn was 4 months old when he was put under. I'll never forget that day. September 28,2011 we went in just to have Finns eyes dilated. The doctor came back to say that he thought he saw a tumor in Finns right eye that was touching his optic nerve. A possible retnalblastoma. This news would scare any parent. I was a wreck. The doctor said he wanted to get a MRI and a ct scan to really get a good look at this tumor. So there we sat, waiting to hear what the doctors found. In that time I tried to talk myself down from the ledge. Tell myself that it couldn't be cancer and that if Finn had to have his eye removed then at least he would still have his left eye. The doctor came to get me and Ethan to take us into the back room. Not good. Then he sat a box of tissues on the table and had a nurse come in him with him. Really not good. He told us that during the CT scan they found out that Finn only had half a brain. His entire left side was completely gone. No words can describe how I felt when I heard that. I felt like I was just punched in the stomach. Ethan and I cried together. We cried for our innocent baby. We cried for the loss of the picture perfect family we thought we would have. It was devastating. No parent should have to hear that.

We saw a neurologist a few weeks later. he told us that Finn suffered a catastrophic stroke in utero which left him without the left side of his brain. He told us that it must have happened during the 2nd trimester because of how developed the right side was. He is able to move both sides of his body and was right on track developmentally for a baby his age. Thats what was so puzzling to me and Ethan. We would have never known this about our son if it wasn't for the eye injury. The good news was that his head didn't seem to be swelling so they ruled they would not have to put a shunt in his head. Bad news is he will be very susceptible to seizures.

We were lucky that we were able to discover his stroke so early. We still don't know what caused his stroke. They have ruled out infection and blood disorders. We may never know what happened. So we are concentrating on the present. Finn has been working closely with an early intervention specialist, an occupational therapist, and a vision therapist. Every day I can see improvements. Early intervention has definitely been our saving grace.