Friday, December 31, 2010

2010 - What I've Learned

So I absolutely LOVE New Years - it's probably my favorite holiday. To me New Year's has always had this romance to it, being able to shed off the mistakes and heartbreaks of the previous year and look forward with excitement and optimism of the year ahead. I love the end of the year countdowns whether its the top songs of the year or the biggest celebrity blunders of the year. I LOVE remembering what was and hoping for what will be.

This year New Years feels all different though and the things I'm recalling are much bigger and more meaningful than ever before. I suppose you could say that's all part of growing up but I think more than anything its a reflection of where I am spiritually in my life and how my faith and belief in God have really shaped this year for me and my family.

First of all, I think of all the incredible blessings we've had this year and all the heartache and in each blessing I can see heartbreak and in each heartbreak I can find the blessings. I probably lost you huh?

This year was especially hard for us, but it was by far the most rewarding year of my life. I experienced the greatest joy I've ever known and also the most piercing grief. I lost friends and found new ones. I witnessed miracles and experienced great suffering. I saw life come into the world and held a hand as it slipped away to heaven. I watched my husband stand strong in the face of adversity and be a safe place for me to fall at the end of many days spent wondering what the doctors would say next. I experienced faith like never before.

This year I learned that I am stronger than I ever knew anyone could be but I am only strong because I walk in faith that God is in control of my life, without him I am nothing, but with him I can face the impossible and persevere. I saw the tiniest little man I've ever met face great obstacles, baffle doctors, and fight for every single breath he takes. I am so proud to be Owen's mother and I anticipate with great excitement all that God has in store for his life.

This year I took on the toughest and most rewarding role of my life, being Owen's mother and as I make my resolutions the top of my list is to be the best mom I can possibly be to my little man. Becoming a mommy was the best thing that has ever happened in my life.

This year I watched as my angel on Earth, my granny departed from this life and entered into her eternal life. She was the sweetest (albeit the feistiest) little old lady in the world. She loved me and all of the rest of us SO much. She taught me kindness, and generosity, and how much a little girl could get away with when her parents weren't around. I loved her so much and I pray that Owen will know and love her through the legacy she left with all of us. Losing her was one of the hardest things I've been through in my life, but I got to hold her hand as she slipped away into the presence of the Lord. I think about this year and I think I've never been closer to heaven than in that moment or in the moment Owen came rushing into this world. How precious. How remarkable. How lucky am I to have felt so close to heaven?

I've spoken about it before but the worst day of my life was on September 13, 2010 when Owen was just a week old, and I didn't think he would survive the day. I don't think I will ever forget just how bad that day was or how hard it was to see him like that but God was with us and our faith was strong. I overcame my fear of witnessing to people this year. I'm not sure why I ever had a problem with it but I did. Me, an award winning public speaker, actually was afraid to talk about something, but until this year I always shied away from witnessing to people, even though I knew it was something I was supposed to do as a Christian. I just wasn't comfortable with it, but Owen has helped me overcome that.

Owen is without a doubt the greatest blessing of my life. I don't know what I did to deserve to get to be his mom but it is an honor and I am so proud to call him my son. But as I said before no blessing came to us without heartache. We have cried and worried and faced impossible situations but we have overcome them all - Praise God. Owen has given me strength I didn't know I had and I know with God, and Ed at our sides we can face anything.

Those who know our story know that Owen is an absolute miracle, when he was born his apgar score was a 1 and anyone who knows what an apgar score is knows that that is the worse it can be. When he was a week old his lactic acid levels were a 9 and a doctor told me "only a baby could have survived that." Another doctor said he had 0% chance of making it without us as his parents, but all I could think was Thank God we believed in a higher power because it wasn't us it was God. There's no doubt I witnessed multiple miracles in Owen alone but I was blessed to see many more in other children and families this year and I believe that everyday holds the possibility for miracles. I think that's how I will go into the New Year, knowing that God can do anything and miracles really do happen. Knowing that with every heartache we can be blessed beyond measure, believing that what you put out into this universe inevitably comes back to you, trying my hardest to take on life with this new positive attitude I've found through my son. I have high expectations for 2011 but only because I've seen how incredibly wonderful life can be (even in the midst of great turmoil), and I know that God will bless us when we least expect it in the most miraculous ways.

Tonight I pray for Owen as always, and I pray for Ed and I to find comfort and strength along the way. I pray for our family and for every single person who has prayed for Owen. I pray for the life that God has planned for Owen and the journey that we are on. I believe that even though this year has been so amazing (and I truly mean that) that next year will be even more incredible and that blessings will reign down on my son. I think if you put yourself in the right frame of mind as you think back on what was and what will be you can see that even the worst really wasn't so bad. I will miss my Granny for the rest of my life but I was so blessed to have 30 full years with her.

At the end of the day, at the end of the year I look back with great joy on the year that was, I feel extremely blessed and thankful for the experiences and I can't wait to see how those experiences shape the person I am and the things that will come in the new year.

Happy New Years everyone! Be blessed.

Sunday, December 26, 2010

Owen's First Christmas 2010

I'm posting this simply to say that this was the best Christmas of our lives.  Our little "gift" from God was home with us and although he wasn't feeling wonderful we were able to start traditions and enjoy spending time with our entire family on Owen's First Christmas.  He received many gifts, mostly from other people (we figured we'll have to go overboard next year so we'd slide by this year).  Ed, Owen, and I had the best day together and while it ended up turning into a second day as we took him to the hospital and got no sleep we got all we wanted in being able to have Owen home for Christmas.  Yes, we are now back at Shands and there is no telling how long we will be here this time but our wish for a wonderful 1st Christmas together was granted.  I will post pictures for this blog once we get back home again.

Saturday, December 18, 2010

Angels Unaware

As we were driving home with Owen yesterday an idea for a blog post popped into my head. I remembered a scripture that says, "Careful lest ye be entertaining angels unaware." Hebrews 13:2.

So I'm thinking about what to say and how to say it then I notice a billboard and it says "Hear God's Word and Do as it says." I was like wow okay. Then the very next song that came on the radio was Alabama's "Angels Among Us." So here we go.

I know that our faith alone is what has gotten us to where we are right now with Owen and I praise God for that. I also praise God for sending us angels to comfort us on our journey.

Now I don't know what you believe but I believe in two kinds of angels, the kind we can see and the kind we can't.  Most people know that while I was pregnant with my son I lost one of my angels on Earth, my Granny Polly. She had the biggest heart of anyone I've known. She was a bright spirit with so much love to give anyone who was around to accept it. She was so excited about Owen, I'm thankful that she never knew his diagnosis because it would have made her heart so heavy. But I'm equally thankful that she was a nurse because I know through all this she was with us, with Owen, and more importantly with Owen's medical staff. I'm certain that she had some say in some of the nurses we were blessed to have with us. That's the power of believing in something bigger than this world, you know that God can put all things into play to work out for your benefit.

I get a lot of people telling me that I've been so positive, that I'm an inspiration, and so on, but I don't feel like I've done anything. All I did was put my faith in God and it allowed me to stay positive throughout all of this. There was nothing I could do and I can promise you that you get out of this world what you give it, I'd like good things to come to my son so I've tried extra hard to only think of the good.

God blessed us with many angels, some he loaned us from heaven but so many he placed here on Earth for us. Our doctors and nurses were some of the best ever, while they were extrememly good at what they do they also had a very human side to them they were compassionate and caring, they were approachable, they were amazing. We had many angels in our nursing staff but three very special ladies who would become just as much friends to us as they were nurses. With Laura we could always tell exactly what she was thinking by the expression on her face. If there was cause for disappointment we knew it when Owen had done something awesome and was making progress we knew that too. She was a great advocate for our son and made sure I was too and she became a great friend to us. I don't know how I would have gotten through all of this without Laura to turn to for so much advice. Tracie was another one of our nurse angels, she was our tell ya like it is angel and we thank her for that now. Tracie was Owen's nurse the day of his very first embolization, the one where the doctor said "Oh he did great yall should be able to go home in a couple of weeks." Tracie shot him a look like you have lost your mind before she even realized what she'd done. Well we saw it and my mom confronted her about it. Tracie told us like it was and from that day forward she was never shy about telling us what we were really looking at with Owen and things that we should be very cautious of. Tracie prepared us for so much of what we were facing and even going home some of her final words are what guide my decisions with Owen day in and day out. And finally there was Jen. She reminded us of a friend back home and she talks faster than I do. She was a nurse but she had also been in our shoes having had one of her children in the NICU. She saw things from our perspective and helped us (me especially) deal with feelings that I couldn't explain. I know beyond a shadow of a doubt that God put these three ladies in our lives for a reason and I am thankful.

We were blessed with other families who became extensions of our own family, Becca and her parents who were there day in and day out. Richard and Grace who were told to abort their precious angel Hailey. I would jokingly call Richard my husbands boyfriend because they became such fast friends but they were who we needed when we needed them and I'd like to think we were the same for them.

Mrs. Judy Angley is an angel on Earth if there ever was one. She was "the March of Dimes" lady and provided a creative outlet for families as well as free pizza once a week, but more than that she had giving heart and was always available to really listen to anything, whether it was a problem with the hospital staff, parking, or just getting to know you by sharing personal experiences.

Everyday our nurses would change, if we were lucky we might get one nurse for two or three days in a row, but everyday like clockwork the clerk staff stayed the same. In a time where everything was always changing it was great to know that from 3-11 during the week we would have our angels Ashley and Lori there to buzz us in and out of the NICU. Over time they became our friends, real friends. Every night as we'd leave we'd spend a little time with them and we came to expect big huge laughs while we were with them. In a place where the laughter and smiles were few and far between they truly were angels in helping us deal with everything we were going through. We made some really great Shands memories with those two crazy girls. And on our second visit instead of us going to them they came to where we were to check on us and spend time with Owen.

It's amazing how God uses people and places them in your life for a specific reason. There was Lindsey Wheeler, who when we finally talked face-to-face said, "we've met a few times through friends and you were always so nice to me." She made sure I was able to get my post-natal check-up done while Owen was in surgery so I wouldn't be sitting in a waiting room when he got out. There was Cassie Goodson with the Pentacostals of Gainesville who always managed to show up when we needed renewal and encouragement the most. Their church had prayer meetings 3 or 4 times a week and Owen was constantly lifted up in those meetings.  And our cousin Linda & her husband Brian, who provided my parents with a place to stay every time they came down to be with us.

And our greatest swarm of angels were the people back home. The constant encouragement from our pastor, friends, family, co-workers, and church family back home. The phone calls, the text messages, the facebook posts, we knew that Owen was in everyone's thoughts and prayers and that gave us the most comfort of all. The anonymous donations, the love offerings, the fundraisers that friends and family put together for us, the amazing support that we felt from OUR community while we were all the way in Gainesville. The steady stream of visitors who came to check on us all of these things meant more to me than anything ever has in my life. Ed and I are beyond grateful.  Everyday we are thankful for all of the people in our lives and all the many blessings that we so undeservingly received.

This post isn't meant as a thank you note (though I am thankful & I guess it is in a way) - but it's meant more as an acknowledgement of the fact that God provided us with these angels while we were far from home. I cannot possibly name every single person who impacted our lives these past few months but I do know them all by name and I will never forget the things that you all have done for us. And I thank you from the bottom of my heart and hope no one feels neglected in this blog. I simply wanted to express how God puts people in your life at just the right moment for just the right thing.  I know some of our angels will be life-long friends and some we may never see again, but nonetheless you all were there and we appreciate all of you.

Thursday, December 16, 2010

Chunky Man is Eating Again

They started letting Owen eat again late last night. He started with a little pedialite around 11 and then at 3 am he had his first bottle. They told us he would probably start eating again slowly but he took a whopping 4 ozs - the same as he was taking before we had to come back to Gainesville.
The nurse said he wanted more but they wanted to wait before giving him more. At his 7 am feed he took 3 ozs. So I'm pretty sure he's ready to go back to being himself. Praise God. No news on how much longer we will be here or what the plan is for now. They are still monitoring him on the EEG recording brain waves to see if he's having anymore subclinial seizures. He's now on 3 medications to prevent seizures instead of just one that he was on before we had to come back. I will update more when I know more. Thanks for your continued prayers.

Sleeping Arrangements

So, FYI, this is more of a "here's what's happening in our world" blog not so much as an update on Owen. He's sleeping well, in a nice big crib, in fact, I've actually thought about trying to crawl into it with him once or twice as I think it would be more comfortable than our sleeping arrangments.

So anyhow, here's the deal. Owen is in a private room in the Pediatric Intensive Care Unit. It's basically like any ICU in say Flowers or SouthEast, maybe a little bigger room, there's a hideaway toliet, and a couch that pulls out of the side into a ONE-person cot.

Sunday Night
Our first night back we arrived at 2 am EST and probably didn't try to go to sleep until close to 5 in the morning. Ed offered to go to the Ronald McDonald House ROOM on the same floor we are on because they have a "sleep room" for families to use during the day or night while they are here visiting their children. We used it a few times when we were here the first time it was always open I don't think we ever saw anyone else using it when we were here. So, we felt for sure it would be available - wrong. Ed, was such a sweetie and slept on a small couch - not the cushy kind - it has the wooden handrests you would expect in say a doctors office waiting room. Poor baby. I slept somewhat comfortably (much more so than he did) on the cot next to Owen waking only slightly when doctors and nurses popped in to talk to me but I did manage to sleep off and on until around 11. Ed came in a little after I woke up and said that someone woke him up when they left to go to work and told him he could use the cot now, so he managed to get a little sleep too.

Monday Night
We had decided we weren't going to be here very long so it might not be worth it to try to stay at the RMH so Ed and I decide to "share" the cot. I really wish I had pictures of the two of us on that little bitty cot. We actually found a few ways that it worked but I can't sleep laying still in one position all night. We slept until about 2 am and then I couldn't take it anymore. We tried to get repositioned but I never did get comfortable. Around 4 something I got up and went to the RMH Room. Now the RMH Room is a nice sized waiting room with a kitchen space (refrigerator, microwave, table, counter, coffee pot, etc), a computer desk, and a waiting area with chairs down each wall a small couch (Ed's couch) and a TV. It's a cushier waiting room than you typically find and it's kind of a place where families can go to eat meals, or get a little more privacy and comfort than a typical waiting room provides. In the months we were here we would often come up to the RMH Room and find it empty making it a nice retreat from everything else. There is also a smaller room inside the RMH Room called the Sleep Room. It's designed for parents (only - supposedly) to sleep anytime during the day or night it has a passcode lock on the door and two cots, blankets, pillows and such inside nothing else. It's designed just to sleep in that's it. Well I digress. I came over to the RMH Room at 4 in the morning and the sleep room was being used and two other people had turned chairs into makeshift beds for the night, not to mention the room was like 90 degrees for some reason, so I went out into the hall where there were a few chairs and just sat out there for about 30 minutes wondering what in the world I was going to do. Nearing tears and beyond frustration. Around 5 someone came out of the room (WEARING SCRUBS!!!) headed to work - I was angry, very angry. I went back in to find that one of the two people sleeping in the waiting room had moved into the sleep room so I gave up and went back to the cot with Ed. Neither of us had a great nights rest.

Tuesday Night
Well, we decided we might want to try to get a room at the RMH afterall, but of course we weren't able to but we are on the list and have been told that we should have no problem getting in - well spoiler alert that didn't happen. So, I told Ed tonight that he needed to get to the RMH room early to try to get a cot in the sleep room. So around 10ish he walked over and came back to say that someone had already put their stuff down on the cots claiming them for the night. He was upset and we weren't sure how we were going to sleep. I had already called our friend who lives in town and she said we could use her spare bedroom as soon as she got back into town on Friday. We're hoping we aren't here on Friday. Anyways, I thought there's no harm trying to see if he could sleep in one of the rooming-in-rooms they have down in the NICU for parents to sleep in with their kids (sometimes no one is using them). We lucked out and they had one available for Ed to sleep in - it was actually the big one that I could have had a place to sleep too but we wanted to stay close to Owen since he had just come out of surgery and was intubated. So Ed went down and the charge nurse had been one of our nurses and she told Ed the room was available the following night too and she'd try to get it for him (but that didn't happen - someone else needed it).

So we both slept good, me in the cot by Owen and Ed downstairs in the NICU. Until Ed was awoken by some random person bursting into the room while he was sleeping - there is a sign on the door that says Knock Please.

Wednesday Night
I had told Ed that I would sleep in the NICU (before we knew we didn't have that option) and let him sleep in the cot next to Owen for the night since he'd not stayed with Owen at all. Also, we both thought I'd get better rest for just one night if I weren't distrubed by all the dinging and people in and out of the room and the lights from the hall etc. So, we found out around lunchtime that we didn't have the NICU room and decided I would just get to the sleep room early. Well I messed around not wanting to leave Owen and was nodding off before I finally went to the sleep room around 10. And guess what - those same people had put their stuff on the cots claiming the beds for themselves and were no where to be found. I was livid. The sign clearly says, "the sleep room is available for families to sleep 24 hours, on a first come first serve basis. If you are not using the room to sleep please make it available to other families." Ughh. So I called security to have the bags removed because I didn't want to mess with anyone's stuff and create some sort of altercation I just wanted to sleep. Security told me they had nothing to do with the RMH room and that I should call 911?!!! Seriously and say what, uh these people left there bags on a bed I want to sleep on?! How ridiculous. So I did what any sleep deprived, literate, brave person would do and I gently moved all of the belongings off of the cot and placed them on a counter and claimed that bed. Then I called my husband and told him to hurry up and get down here to claim the other bed because I didn't want to be alone in the dark when I was attacked by these people for moving their stuff. He was in the middle of feeding our son and was really looking forward to spending the night with Owen and while I didn't want to leave Owen alone I was really fearing for my life and wanted to sleep. I was prepared for a battle. Ed said he would come down when he finished feeding Owen. I laid there scared and decided it wouldn't hurt to pray for my safety so I did. After a short time I heard the outer door open and I waited but no one ever came into the sleep room. Then again I heard someone this time they came to the sleep room. I didn't know whether to pretend to be asleep or be awake prepared to defend myself but it was just Ed standing there with a pillow in his hand. As I was explaining to him how scared I was and that I really appreciated his willingness to sleep in there with me to ward off any attacks the person who had "claimed" the room came in and said, "Oh you moved my stuff." I explained very calmly that I hadn't slept in days and that I had to get some good rest and I hated to move her stuff but since the bed wasn't being used at the time I felt it was only fair that I be able to sleep in it. She was surprisingly understanding and said that her little sister was going to sleep in that cot but they would share the other one. She encouraged me to go ahead and get some sleep. She asked Ed (with pillow in hand) if he was going to sleep in the other cot and seeing that everything was okay he told her no and went back to be with Owen. Thank God that went as well as it did. I guess they had left their stuff and gone to get some food because as I lay there trying to go to sleep it sounded like five or more people were in the waiting room with her cutting up and talking. Finally it got quiet until around 2 am when they finally came in and laid down to sleep. I was flabbergasted (in my sleep) that they would claim that space for that long not intending to use it and quite proud of myself for standing up to them and taking care of myself instead of walking away from what I had every right to use. I woke up early around 5 to the snoring of strangers and there next two me were the two women lying at opposite ends of one cot and I knew their pain as well. I woke one of them up as I left to tell her she could have the cot I had been sleeping on. I think in the end we are all dealing with similar situations and even if someone upsets us we understand where they are coming from. The entire situation could have become a very bad situation but they were really understanding. Even though I woke up a couple of hours early I did get some good rest. And while Owen and Ed were sleeping quietly I found some quiet time to type a couple of blogs and even get a quiet breakfast by myself in the cafeteria.

Now, I wonder where we will sleep tonight?

100 Days Old

In Kindergarten we make a big deal out of the 100th day of life, yesterday we praised God for the first 100 days and prayed for a million more.

I was awoken to Dr. Pincus and LeAnn, Owen's nuerosurgeon and his nurse practioner, checking in on Owen. Dr. Pincus said that since there'd been no other seizure activity the most likely cause of the seizure last night was the change in pressure from the shunt replacement surgery. He said let's get this breathing tube out of him this morning and see how he does.

It's so hard to see him on the breathing tube we know he hates it. But they've kept him very sedated to deal with being on the breathing tube so to get him off the tube we have to stop the sedatives and make him very uncomfortable in order to remove it. They stopped his sedatives around 9 am. He finally started opening his eyes around 1:00. He'd open them then close them. Around 2:00 they changed his respirator setting to spontaneous meaning it would only breath for him if he stopped breathing and they said he would need to stay like that for about 30 minutes to show them he was going to do well on his own (well we should have known that meant 2-3 hours in doctors time). Around 4:00 they said it was okay to finally extubate him. As soon as the tube came out Owen started screaming a silent scream. After a few minutes you could hear a little raspy sound when he would cry - it would be hours before his voice would come back. He cried and Ed and I comforted him. As long as one of us was holding his hand he would be okay but if we tried to let go he would start crying again.

The nurse gave him some Tylenol to help him rest without actually sedating him and to help with the discomfort the tube had caused. We were told in a couple of hours he could finally eat something (he's had no food since he was life-flighted on Sunday). Of course it ended up being several hours before they would finally let him try some pedialite and when they did he did very well with it.

We also received really excellent news from his cardiologist. They looked at his ECHO from yesterday and found that he no longer has pulmonary hypertension. We were told that he would likely have this problem with his heart for several years but today we were told he no longer has it to deal with. The right side of his heart is no longer enlarged and is functioning properly. Though we believe he will always have an enlarged heart (because of all the people who love him).

All in all today was a quiet, (mostly) peaceful, good day.

Hoping the next 100 days are much better for our little man.

Wednesday, December 15, 2010

How Quickly it Changes

When Owen was in surgery having his shunt revised - replacing the valve and top half of the tubing - I kept myself busy writing a note that I posted about what had happened since we'd been here this second time.

Owen before surgery.

As I brought it all to a close Ed came in and told me that Owen was out of surgery and everything had gone well. The nurses wanted about 10-15 minutes to get him situated and then they would call us to come see him.

I closed the note so I could get to Owen and we waited for the call. While we waited the fellow from nuerosurgery who had been present during the surgery came and explained everything to us and told us that Owen had done incredibly well during surgery. We were so relieved. We waited and after a while we assumed the nurse had forgotten to call us so we went to see if we could get in to see him. The clerk said they were still working on him and to wait a little longer. It was probably an hour and a half before we were able to go back.

Owen after surgery.

The anesthesiologist came and saw us before surgery and told us that they would remove his breathing tube before they brought him back upstairs so my first question out the gate was why is his breathing tube still in. It was then that we were told that Owen had had another seizure after his surgery and that he had stopped breathing on his own for five minutes and had to be reintubated. They assured us that it was only as a precaution as he had started breathing again on his own but it was labored and his breaths weren't as strong as they wanted them to be. It would be the next day before they could tell us with some certainty that the seizure was likely a result of the change of pressure in his brain from the surgery and a combination of that and the anesthesia. We were told that a grown up who had just come out of anesthesia and had a seizure would just as easily had stopped breathing as Owen did. I asked about the lack of oxygen to the brain when he quit breathing and was assured that he never lacked oxygen as they bagged him immediately and gave him a steady supply of oxygen - he just wasn't doing it on his own.

We talk about it being a roller coaster and there being ups and downs but they come and go faster than you can imagine. One minute we're told how wonderful he did and while we're waiting thinking he's doing great he's in the next room not breathing. It's hard to wrap your brain around but luckily he has angels all around him - some we can see and some we can't - making sure that he is okay all the time.

Tuesday, December 14, 2010

Shands Round 2

*** This was originally posted on Facebook as a note on 12.14.10 just before Owen got out of his shunt replacement procedure.

I posted at 5 am that yesterday was pretty uneventful but the truth is the past couple of days have been pretty busy.

I knew Sunday was going to be a bad day when it started out. We woke up and got ready for church but one thing after another went wrong and it was 45 minutes into our church service before we were even ready for church so we missed it - and I was very upset. I even said - today's not going to be a good day but little did I know how bad it would be.

We had lunch plans after church to meet some family friends in Dothan to have lunch with them so we headed on to Dothan a little early. On the way Owen had a seizure sitting in his car seat next to me. I noticed it immediately and began videotaping it with my cell phone as I'd been instructed to do to show the nuerologists when we returned to Shands for his regularly scheduled visit. This was the second time he'd had a seizure since we'd been home the first was very similar on Tuesday, twitching around his lips and eyes and then he threw up when it was over. The seizure at 11 am on Sunday was the same twitching around his left eye then he threw up. Afterwards he looked around for awhile before falling asleep. He slept really hard - through the time he should have woken up for lunch.

While we were at lunch we woke him up to feed him (something we very rarely do) but it was past time for him to eat again. After he finished eating and I was holding him he started having another seizure. Our friend timed it and it lasted about two minutes. Afterwards he was pretty pale so I called his neurologist. I was given the most contradictory instructions from the nuerologist, first I was told to give him his phenobarbital med early (now) at a slightly higher dose. Then I was told to take him to the hospital to get a phenobarbital level checked then I was told they wouldn't just check his phenobarb level for us so I needed to just take him home and give him his medicine then I was told if he had another seizure to call 911 and have them transport him to Shands (even though I expressed how far away we were and that they wouldn't transport us to Shands). By the time I was done with them we were almost home and I called our pediatrician Dr. Sherrell and he ordered a phenobarb level for us at Jackson it was waiting on us when we got there and I had my mom bring us the medicine so that immediately after they drew his blood I could give him his medicine. It was around 4:30 when I gave him his meds and it was about 20 minutes later when he seized again in my arms and turned blue. We ran over to the ER where he had a fourth seizure. They assessed him and gave him another dose of phenobarbital via iv to get it in his system faster. We were told his phenobarb level was 24 when we got him to the hospital and his nuerologists want it between 35-40. His body metabolizes it so fast though that his level sometimes dips low like that.

Transportation was arranged and he was life flighted around 9 pm on Sunday to Shands. Ed and I were on the road shortly after and we arrived by his side around 2 am (EST). When we got here we learned that he'd had a fifth seizure and had stopped breathing. They started him on a new seizure medicine to try to prevent the breakthrough seizures he was having. We watched him closely until around 6 am when I finally dosed off on the cot next to his bed. Ed had to sleep on a couch in a waiting room down the hall.

On Monday, they checked his levels again they were up to 33 (which is pretty normal for Owen). Around 8 am they came and connected 16 wires to his head and wrapped them in gauze to keep them secure and then they set a camera up on him to record his movements while they recorded his brain waves through the EEG. We were told they would keep that on for 24 hours. Nothing much else happened Monday. We waited all day by his side for any hint of whether or not the EEG was picking up seizures we couldn't see. We were told that he would have an MRI on Tuesday (it was scheduled for 9 pm but we were told they would do it much earlier). We signed consent papers for general anesthesia and then around midnight we tried to go to sleep sharing the one person cot beside Owen's bed. It was a very long night with very little rest.

Today, Tuesday, has been much more eventful. We woke up to Owen screaming while the technician was taking the wires off of his head. He was not happy, he's hungry & tired. He's been NPO since we left Jackson Hospital on Sunday. I held him to comfort him while they took all of the tape and wires off his head. Then he was whisked away for an MRI. They would intubate him and put him under general anesthesia to look at his brain on the MRI. It was then they discovered his hydrocephualus was worse - a sign his shunt wasn't working properly. A doctor from the neurosurgery team came and tapped his shunt (they stick a needle into the valve of the shunt to get cerebral fluid - now came out - it was now more than apparant that there was a problem with the shunt). We were seen by the head of nuerosurgery Dr. Pincus - he was preparing to do another surgery to fix the shunt. Meanwhile his cardiologists came and did an ultrasound of his heart. X-Ray came and did 4 x-rays of his chest, abdomen, and brain. And the nuerologists (yes he has a nuerology team and a nuerosurgery team) came to assess him. We've seen more doctors today than I can count. Even the head anesthia doctor came to his bedside to talk to us about his second general anesthesia of the day. Around 3 pm they took him back for his shunt revision they call it. As I'm writing this Ed has just come over and said that he's out of surgery and doing well we are waiting for them to get him back on the floor and should be able to see him in about 10 minutes.

Earlier today there was talk of another embolization before we leave but then Dr. Pincus told us he'd prefer to wait if there wasn't a cardio reason to go ahead with the surgery - they'd like him to still be a little bigger before an additional embolization. Dr. Pincus said he'd like for us to do the shunt replacement then get him home for the holidays and re-evaluate in January. We're told by our nuerologist that they think the additional medicine they've started Owen on will help but he will likely continue to have more seizures. We will continue to pray. The cardiologists think we may be able to take him off of one of his heart meds because he's doing better. Praise God.

Well once again I wrote more than I intended but that's the whole shebang what got us here and what's happened since we've been here - it's much easier to write a note than to repeat it a hundred times and everyone wants to know and we want you all to know so you can continue to pray properly for Owen. We genuinely appreciate all of the support and encouragement we get from home. It really keeps us going through this whole process. We have such a precious sweet angel and we pray that you all are blessed - we have been.

Thanks for everything.

Jerica & Ed

Monday, December 13, 2010

The Helipad

I've come to notice that there is something about life flight that people find fascinating. In our first 85 days at Shands I tried to ignore the constant coming and going of the helicopters. I mean I admit the first time I saw the helicoptor land and take off from the South Tower at Shands I stopped and watched (as did every other person that was with us and pretty much everyone around). From then on though for some reason everytime I'd hear the helicopter and people around me would lean out to see it I'd find myself uninterested - something in me didn't want to make it a spectacle but I don't know why? It seemed human nature to stop and look because that's what everyone did but to me I felt what's the big deal I've seen a helicopter before.

But there is something incredibly different about seeing the helicopter your baby is on. When the life flight nurses wheeled Owen out of the hospital room they stopped to let mommy & daddy get one last kiss before he left and the nurse looked at me and said you can come out and watch us take off if you want to.

As I followed my baby outside I found where the rest of the family had gathered out there to see him off. I couldn't just stand there and watch but I wanted to be close to him as long as I could. I hugged everyone goodbye and heard the propellers start to whip in the wind slowly first then faster and faster. Ed walked me to the truck where I found privacy for the first time in awhile and burst into tears thinking that I wanted everyone who saw that helicopter in the sky this time to know it was my baby and to wish him well. From the truck I watched the helicopter lift off and fly away with my precious son a passenger of the night.

The nurse who had offered to let us watch was really wonderful she texted me the whole way giving me updates and finally texted me a picture to let me know Owen was in good hands - I already knew that though because we've placed him in God's hands all along.

I don't know that I will ever feel so uninterested in the life flight helicoptors anymore but I think instead of wondering who it is or what happened to them I will just quietly lift them in prayer and move along. And that light in the sky in the night well it will forever remind me of a time when angels surrounded my son in the night winds on his way back to Shands.

The picture sent from the nurse once they were at Shands.

Friday, December 3, 2010

Not Quite a Week

Do you have any idea how hard it has been for me to not be able to do a photo shoot of my little man?!  There's only so much you can do in the NICU and I could have done more (in terms of photography) but I found that everytime I was by Owen's bedside I was in mom mode not photographer mode - though I will say there were moments holding my baby that I would look down at him and think this would make the most incredible picture, though of course capturing the picture would require finding my camera and moving around and I just resolved to hold those pictures in my mind and in my heart and selfishly keep those private special moments to myself.

So anyways, I would have done this shoot the day after we got home but all of my photography backdrops had been moved into the shed and so I had to wait until Ed could get around to digging them out and well, it's not like we didn't have a lot of other things going on.  So without further ado here are the much awaited (for me anyways) baby pictures of our precious Owen.






Owen at 3 months old.

The Very Best Homecoming!

Monday, November 29, 2010 words can't describe the joy in our hearts when we were told we could bring Owen home.  Most people don't know but on Sunday our resident came into the room where we were staying with Owen and told us that she was going to recommend Owen have another procedure to insert a G-Tube for feeding before he went home.  She was worried he wasn't eating enough and wasn't gaining weight consistently.  We were disappointed but still hopeful because we knew that the attending doctor, Dr. Burchfield, had said only a week ago that he didn't feel Owen needed that procedure.  The resident informed us that Dr. Burchfield was going off duty and wouldn't be there on Monday and once again we were crushed.  Part of the problem with having a child in the NICU is that his doctors are always changing.  Owen had new residents every week and a half and the attendings changed every month or maybe every 3 weeks. Dr. Burchfield had been the attending on duty when Owen came into the NICU and he had watched Owen go from the very critical child in heart failure to the stable "kindergartner" with a problem eating.  He had been advocating for Owen to go home and we felt he would let him - if he was there. 

Imagine our surprise when we got a knock on the door at about 8 am and Dr. Burchfield came in.  He was going off duty so we didn't expect to see him but it was his last day and his first order of business was letting us know we would be discharged.  He had told the nurse to have us out by noon because we had a long drive home.  He reassured us and told us that we would know what to look for.  It's important that we monitor how much Owen eats each day and it's been scary even being home watching him eat well one day and not so well the next.  From my limited access to information on children with the Vein of Galen I saw a common thread that most of the children have problems gaining weight.  Owen takes two diuretics twice a day so that only makes it harder for him to gain weight.  I worry about it more than I probably should as anyone who sees him comments on what a chunk he is.  I pray everyday that he eats good.  We were warned by our resident and by one of our core nurses that if he came home and didn't eat well he would be deemed as "failure to thrive" a diagnoses that breaks my heart but we were assured too that the procedure could still be done down the road if it were deemed necessary.  I have to believe that Owen will be fine.  I do push him and I count every milliliter he eats just to be sure I'm keeping up with it.  For now his pediatrician is having us bring him in once a week to weigh him (more for my peace of mind than anything I think).

Owen has adjusted to being home quite nicely.  And Ed and I have adjusted to it as well, though it will be a whole new adjustment when Ed goes back to work next week.  Owen loves being held now that we can do it all the time with no wires connected to him and he also loves being in his swing.  He hates baths and just one of his many medicines.  He sleeps really well, he usually gets up in the middle of the night once and then wakes up between 8-9 (I know how lucky I am).  I don't think I even believed we were really taking him home that day even with everything going on.  We got our discharge papers around 11:45 that morning, then we fed him & packed up the truck, even leaving the hospital there was too much to do for it to sink in but in a quiet moment sitting outside of the Ronald McDonald House with just me and Owen in the truck the tears swelled up and I cried for I knew what all was behind us and I knew my baby was on his way home.  On that last day in the hospital Dr. Burchfield said something I will never forget as long as I live.  He told us that "this child had zero chance of making it without [us] as his parents." In that moment all I could think of were all the prayer warriors who were lifting us all up every day and night because I knew we had zero chance of making it without God and those answered prayers.

Thank you for allowing me to share with you.

Why Smidges & Smudges?

First let me start by thanking you all for caring so much about my son and our family.  From the moment we found out that Owen had a brain aneurysm we have been overwhelmed with community support.  I can't express how much that has meant to us and helped us through this whole ordeal. 

I've always been a pretty guarded person as far as online-sharing of personal information goes.  In fact, if it weren't for Owen's situation I can't help but think that I wouldn't post anything.  But the truth is I believe that every single person who prays for my son ensures his continued success.  So I feel it's imperative to keep the community updated on Owen, and now so many people who have followed us from the beginning have asked that I continue to share him with them so that's what I hope to do here. 

I set up this site while we were still in Gainesville in the hopes of being able to go in depth about what exactly Owen, Ed, and I were going through and even though we are home I still plan to use this blog to keep people updated and to explain further our experience with the Vein of Galen anuerysm.  My hope is that people will continue to pray for Owen every single day as we are told we still face a long battle.  We have to make 3 trips to Gainesville in the next 6 weeks to follow-up with Cardiologists, Neurologists, and his Neurosurgery team.  Secondly, I hope to help other families who may come across this blog who are facing the uncertainty that comes with this diagnoses.  In my research I found very few sites where I could read about others who had been through what we were going through and I hope that this somehow helps someone else.  Thirdly I'm doing it for me.  I love to write and I'm hoping that this blog will get me back to the process of journaling one I think is really important and I don't do nearly enough anymore. 

When I first set this blog up I went through several names that I wanted to use but they were taken.  I couldn't shake something the doctors kept saying though.  Everytime I would ask about Owen's heart they would say it looked a "smidge" better.  Once the doctor said "marginally better."  I literally asked if marginally better was better than a smidge better.  I pray we keep getting a smidge better every single day and smudges are the impressions Owen makes on our hearts every moment.  Therefore smidges and smudges was created.

I'm very excited to begin this new journey and we are beyond happy to be home with Owen.  I welcome the opportunity to share my little miracle with you and all I ask is that you continue to pray for him.

Happy reading!

Tuesday, September 21, 2010

Our Journey Thus Far

Our Journey Thus Far

I’ve been wanting to write this for awhile – and I apologize in advance for how long I anticipate it being but there’s a lot I want to say about the journey we’ve been on to bring our precious baby boy home healthy.

First things first – how it all started:

One of the biggest lessons I’ve learned in the past couple of months is that God is always right on time.  Now, like a lot of lessons we learn in life it has practically had to be beaten over my head but I’m learning now that even when I think things should go differently, God has a reason and his timing is perfect.  Exhibit 1.  I had a very good pregnancy, granted I had morning sickness from about 4 weeks until the day I had Owen, but all in all everything was great, until 31 weeks, then our world was turned upside down.  But hold that thought.  I worked all summer, starting the first day we were out of school at Golson, through August 4th.  I taught the summer VPK program which was a 300 hour program.  I knew that a mid-morning appointment in Dothan would cause me to miss about half a day of work and I didn’t want to miss that much work so I rescheduled my appointment pushing it back one week.  That way I could work through my lunch break and only end up taking 30 minutes to an hour off to make it to my appointment.  Well imagine my frustration when they told me that day since I was leaving early I should go ahead and take my lunch and just take the rest of the day off.  The whole reason I changed my appointment was so that I would not miss too much work.  Little did I know God had another plan – he was in charge – he was at work in our lives.  We had a wonderful OB in Dothan, we were using Allison Marker (LOVE HER) at Cleveland and Gilchrist.  We were at a point in the pregnancy where we meet all the doctors and we were meeting the third and final doctor this appointment.  Well, I believe it was a combination of having a different doctor measure me, waiting an extra week, and just good thorough doctoring, and God’s guidance that led the doctor to order an unscheduled ultrasound for me that day.  April the technician found a spot and the next thing I know we have an appointment in Pensacola two days later “just in case.”  We went to Pensacola and it took 3 different technicians 4 or 5 tries to find what they were looking for because of the way Owen was positioned, but at last they found it and explained to us that they believed Owen had the Vein of Galen brain aneurysm – it was the first time we heard those words in relation to our child “brain aneurysm” wow, it’s not what you expect at all.  Even in the midst of that storm, all I could think was praise God they found it.  We would later confirm their initial diagnosis through a fetal MRI and we would learn that less than 1% of cases of Vein of Galen are diagnosed in-utero, yes praise God they found this.  And in those rare cases they are almost always found because the baby is already in heart failure or has some sort of deformity.  Our baby’s heart was perfect, as we would be on heart monitors weekly until he was born with no deformities.

We met with neurosurgeons before he was born and as he was showing NO symptoms of the aneurysm we believed that he would likely be fine until he was about 2 years old and then we would treat the aneurysm, we were warned that many newborns with this diagnosis do experience heart failure but the doctors really felt that he would be among the group of children who go undiagnosed until they are about 2 years old and begin to develop hydrocephalus (water on the brain).

The plan was for us to induce labor at 37 weeks and have him in Pensacola.  At 36 weeks they did an amnio to determine if his lungs were developed enough to induce at 37 weeks, they weren’t.  Initially I was devastated, I was so ready, we had been counting down the days for weeks, and now we were being told possibly two more weeks.  Looking back it was somewhat selfish and although I was upset it was brief, maybe half an hour then I realized there was a reason for this and I could handle another week or two, besides God was at work.  The next week our doctor called and told us he would induce me on September 5th hoping for delivery on the 6th.  And that’s what happened.  Owen was born on Labor Day after 20 hours of labor I had to have a C-Section, I listened and waited for him to cry but he never did, I was really scared, but he was healthy, they had intebated him immediately so he couldn’t cry.  I heard the nurse say he had one eye open then they wheeled him over to me where he opened both eyes for about 20 seconds he stared at me before he was wheeled away.  It would be hours before I would see him again.  Late that night we convinced the NICU at Sacred Heart to break the rules and allow me to come down (in my bed) to see him during non-visiting hours.  Initially, he was doing great.  His heart looked good, he was 7 lbs 15 ozs, a giant in the NICU where the average baby weighs 2 lbs. Thank God they made me wait another week to ensure he was a big baby – that would be so important when he faced his first operation.

So What Exactly Is the Vein of Galen Aneurysm? And what does it do?

Basically, the VOG is a malformation of vessels in the brain.  But the biggest problem with the VOG in newborns is that it causes heart failure – and it did in Owen at 2 days old.  The heart works so hard to pump blood to the body but since the brain is in distress all of the blood goes to the brain first and in the VOG the blood doesn’t travel from the vessel into smaller veins, then into capillaries like it should it just goes straight through the vessel and back to the heart meaning it leaves the heart and returns to the heart at the same speed and pressure.  The heart isn’t made to handle the blood returning at that speed and pressure so the right side of Owen’s heart started to swell pushing his lungs out of the way and causing major distress to his heart and lungs.  Before he was born it was decided that Owen would have an MRI around Day 4 (doctors plan) but Gods plan bumped that up to day 2.  By Day 3 Owen was on a jet to Shand’s so that the neurosurgeons who developed the treatment for VOG could begin treating him by Day 4 he was undergoing his first brain surgery.  I remember many people asking why they were waiting to operate, why wouldn’t they operate immediately, and I couldn’t answer that question but now I know that they needed to make sure he was stable and he’d had a big day, being moved from Pensacola to Gainesville.  I made them discharge me a day early from Sacred Heart and we left the hospital when he did.  I was pretty okay until I was being wheeled out of the hospital without my baby – I broke down and cried to my mom that I should have a baby in my arms but I knew my baby was in God’s arms and I got to him as soon as I could.

The treatment that they’ve been able to do on Owen entails going in through the groin to access the brain.  They place coils (or glue) in the vessel which routes the blood the way they want it to go.  Before his first surgery, the neurosurgeon told us that they expected to help a little then come back 3 days later and do it again and this would repeat until he was better likely for weeks.  After the first surgery they were very optimistic and told us that we could wait a month before they had to go back in that way Owen’s vessels could get bigger before the next procedure.  We were so excited and felt really good about the prognosis.  That was on a Friday.  Saturday and Sunday were good.  Monday was not.

The Worst Day

Monday, our baby was a week old, and when we got to him that morning he was grey, his organs were not profusing – meaning that blood wasn’t getting to them and they weren’t functioning properly.  The doctors told us that the brain was demanding all the blood so his stomach and extremities weren’t getting the blood they needed.  I didn’t want to leave his side, I was afraid he wouldn’t be there when I came back if I left him.  His lactid acids were an 8 (they want them under 1 – 8 is very bad).  The doctor actually told us that he wasn’t giving up on him but there wasn’t much left they could do.  It was the hardest day.  I had been so strong for weeks but that day I wasn’t so strong.  Luckily, Ed was and he kept it together for me, everytime I began to have doubts he woud remind me that God was going to take care of Owen and that he was going to be fine.  We prayed over Owen so many times just as we’d been doing.  We were told that morning that they were going to go ahead and do a second procedure – again, I wanted them to do it right away, I didn’t understand why they weren’t wheeling him into the OR, he was at death’s doorstep.  But God was right on time again.  We left Owen around 2:00 that Monday and I took a nap upstairs at the hospital.  When we returned he was a different child, his color was back, he was doing better, becoming more stable, prayers were being lifted and answered.  I remembered something his Godmother would do when she was having a really hard time - she would pray and then sleep with her bible under her pillow.  So we went and bought Owen his "first bible" and we placed it under his incubator and prayed with him again. We also put our bible under our pillows and they've stayed there.  The next morning when he went into surgery his lactid acids were down to a 2 and he was very stable – he was in a much better place to go into the surgery than he would have been the day before, again God showed me he’s right on time and now I try to remember when I’m not sure why things aren’t happening when I think they should that God has a plan and he’s right on time.

God is still in the business of answering prayers

The first surgery they placed 17 coils in his brain, the second procedure they placed 2 but they got the flow in his brain down from 46% to 16% they wanted to get it under 20% so they felt they were very successful.  It’s been 6 days now and they’ve all been really good days.  His lactid acids have gotten better and better, his organs are profusing, his heart looks smaller on the x-ray, his heart functions have improved, he’s almost breathing on his own, and he’s digesting food.  They have taken him off of most of his heart medicines and are weaning him off the last one now.  Today he was taken off of his ventilator and we were really excited - but his lungs weren't strong enough just yet so they had to put him on a C-Pap which allows him to breath on his own but still gives him just a little support.  He’s doing great, yet we know how fast things can change so we still pray.  He had an MRI Sunday and today the neurosurgeons told us that they would like to wait about 2 months before they go into the brain aneurysm again for another treatment.  It will likely be about two weeks before we can take him home then we will still have to travel here every two weeks for doctors appointments with the nuerosurgeons.  We are told he will need several more procedures over the next couple of years and there is still no way to tell what damage has been done to his brain.  We are told with babies “all bets are off.”  They haven’t yet decided which part of their brains will do what so there’s no way to know the long-term effects this will have on him.  So we pray every day for him to be healed, for him to live a full, whole life, for him to be a living testimony of the love and healing power of God and we believe with all we are that he will.

Our little Piece of Heaven

Our little Owen is just 2 weeks old today and already he’s taught me so much.  We know that God has a plan for him and his big heart and we are so humbled by all of the people who have prayed so hard for him for so long.  We praise God daily for all he’s done for us.  Every thing that has been placed in our path God has provided for us in an amazing way to make sure we got through it all.  I can’t imagine going through all of this with anyone but Ed, he has been so incredible and I can’t imagine how I’d get through all this without him.  We thank God for Owen, our families and friends and our community and we can’t wait to bring Owen home.

Final Thoughts

The past couple of days I can't help but remember a prayer that Ed and I prayed a lot months ago when we first began searching for a new church home - together we would pray for a closer walk with God.  Well, I know sometimes we have no way of knowing how God will answer our prayers but that is definitely what our angel has been to us, we definitely have a closer walk with God.  We had began visiting at Evangel Worship Center almost a month to the day that we found out about the aneurysm, in a way I believe God was preparing our hearts for what he knew was coming.  Just one more shining example of how God is right on time and God is always answering our prayers.

I know without a doubt that I couldn't have carried this burden alone and if it weren't for my faith and relationship with God I don't know where I'd be right now.  Some may critizice me for publicizing so openly what has been going on with my son but I feel obligated to both protect my son with a blanket of prayers and to keep those prayer warriors updated with his progress.  Complete strangers have called, emailed, and mailed us cards to let us know they are praying for Owen and that comforts us so much.  Our pastor was on his way here to see us at Shands and ended up on the phone with a Florida Highway Patrol Dispatcher out of Tallahassee who asked what he was doing on the interstate.  He told her that he was headed to Shands to visit a couple from the church who had a child down there to which she replied "is it baby Owen?"  We have no idea who it may have been but she wanted us to know she was praying for us - and that's just one of the many stories we've heard.  I hope that Owen gives others a closer walk with God too.

If you've taken the time to read all of this I thank you for caring about our family so much (and for having the patience to read this all).  I ask you to continue to remember Owen in your prayers as we are just starting out on this journey and I pray that God blesses you and your family as well.