Wednesday, September 17, 2014

One year

One year ago today I loaded up my 10 week old and my 2 year old and went to a doctor's appointment that changed my life.  I hadn't given this appointment much thought, and never could have imagined the road this appointment would lead us on.  Looking back, I went into that day like any other, naively feeling unshakable, blissfully happy with my little completed family, fresh with the joy of the new life in our home.  My world was rocked that day, permanently tilting on its axis in a way that only your child can do.  I work in a place where I have seen this happen time and again.  Parents getting news that instantly alters the course of their lives, often much worse news than I received that day.  But so many times have I seen this happen.  Sat with the parents as we told them, placed a hand on their back, given a hug, passed the tissues.  Watched as they tried to wrap their heads around something so life altering that it is hard to grasp its magnitude.  Saw them not want to believe, and struggle to accept.  Saw them grieve the life they envisioned for their child, as it was replaced by one they couldn't have imagined.  I never thought I would be in their place.  In our case this process happened over a period of weeks, with the first piece of the puzzle given to us that day.  Even then, I refused to believe this would be a big deal, or really alter our lives much.  As the days wore on, and I learned more and more about this mysterious diagnosis that was given to my son, I felt myself falling.  The scope of its magnitude, its effect on our lives, and more importantly, Jacob's life, was more than I could handle.  I learned what it is to be helpless.  Desperate-  For it not to be so.  For help.  For information, but then to find that information you wanted just made the future look darker. For months I struggled between anger, depression, despair, and fear.  Never before had I experienced something that exhausted my ability to cope.  I have always just dealt with whatever rolled my way, arrogantly basking in the perfection of having the life I dreamed of...husband I love, kids, home, family, job.  This threat on my son shattered me.  I know what it is to come to the end of yourself. But from getting to that place, I gained so much.  Looking back on this last year, I am humbled and beyond thankful for all who have rallied around us this year.  From my husband, my rock in this, to my children, for not allowing me to wallow in it or simply check out.  You gave me joy every day. Our parents and family, for being there helping with anything and everything, being a unceasing support every step of the way.  Our church family for faithfully praying for every detail and supporting us.  Our friends...from giving blood, buying a t-shirt, praying, calling, sending a card, a note, an encouraging word, you have all been amazing,  For my work family,..I can never express my thanks for all you have done this year.  From fundraisers to the simple act of looking me in the face and not shying away from the hurt you saw there.  I will forever be thankful for the family of people in the NICU who truly care for me and mine.  This year would have been darker than I can imagine if it wasn't for each of you that was there for us.

One year ago, I was broken.  Though no longer lying in pieces, I will never be the same.  When I got that news one year ago, everything changed, just like it did when I held Jacob for the very first time.  Good or bad, change comes to our lives.  Uplifting or shattering, change comes.  How we respond to those changes shapes who we are.  I pray I may never sink under the weight of Jacob's condition, that I will be strong and what I need to be for my family.  I hope all we have gone through this past year has made me a better person, with the recognition that we all walk a path difficult and unique to each person, and that we all could use a little grace.  A better nurse, with caring and empathy beyond that I was capable of before this.  A better friend, there for my friends as they have been there for me.  A better wife, with appreciation of the man he is, and the wholeness of how he completes me.  A better mom, a fierce advocate, willing to do whatever it takes to keep my son in the best of health.  But also better at enjoying the little joys in life, looking always for the miracle in each day.  Because if not for all we have gone through this year, I wouldn't have recognized all I have to be thankful for.  Nor would I have learned to appreciate the beauty in "Today's Miracle." May I always keep my eyes open and my head up, looking toward the future and all the good in store for us.  Thank you all for being there for us this past year, though it had its tough times, it had so many great times too.  Love to you all.

Thursday, September 4, 2014

Can't catch a break...well, not the kind he wants at least.

Well, we were cruising along, Jacob was doing great, getting so grown up, ever independent and active.  He and Luke were actually about to start Mother's Day Out 1 day a week so I could get some school work done.  So Tuesday we were shopping for him new shoes for school (& Asa too), and for him a lunchbox and a few other things so he'd be ready to go on Monday.  We were in the shoe store, and he jumped off one of those firetruck things for the kids to play on.  Immediately he started screaming and holding his leg.  I didn't want to believe he was hurt badly, but after he didn't calm down after a few minutes, I thought something might be wrong.  He usually walks off the little bumps and falls pretty well, but was still crying and couldn't walk.  We left and I called David and we headed home so I could drop off the other kids and take him to the hospital.  I decided to not say anything and see how he was when we got home, cause he stopped crying in the car.  But when we got home, I got him out and he tried to walk and took one step and fell down crying.  I put him right back in and off we went to the ER.  There was little doubt in my mind at that point that he had broken something.  The doctor in the ER was certain as well after examining him, and the X-Ray confirmed...broken tibia bone in his leg.

They put him on a temporary cast (up to his hip), and we follow up with ortho in a week for his long term cast once the swelling goes down.  

It has been a rough couple of days so far.  He can bear NO weight at all, so cannot walk.  This is torture for my always active little boy.  The first day wasn't so bad, because he still had a lot of pain, and didn't feel up to much.  But by the 2nd day, he was over it.  He wanted down, wanted to play, wanted to ride his scooter, just wanted to walk.  He is sick of the couch, and is over watching TV.

But I can still get a smile outta the sweet little guy!

I am trying to keep him occupied, playing puzzles and toys, but he just wants to get up and go.  He begged me yesterday, saying his leg was all better now.  Poor little guy.  Taking him outside was torture, he just wanted to go run and play.

Please pray for us, that 1) his leg will heal quickly with no complications, 2) he will get used to getting help and doing more sitting and not running around, 3) the new cast will allow him at least some freedom of movement, 4) his mommy will have patience and ingenuity to come up with ways to keep him occupied and make this easier on him, and 5) these next weeks pass quickly!  I'm not one to wish time away, as I know it is precious and fleeting and all, but I don't mind saying, I'm ready for this to be over with and my baby boy be able to run and play as his little heart desires.  I still want to see the beauty in these days, however difficult it may be to find.  Pray we will continue to look for "Today's Miracle" even in these challenging days, I know we are fortunate in some ways to be dealing with just a normal little kid injury, instead of the complex, rare issues we normally are facing.  For that I will be thankful.

Home and back in the Swing of School!

We are back settled at home after our trip to Boston.  We had such an amazing trip.  Although Jacob's treatment showed discouraging news, we are still so thankful at how well he has recovered, and how well he is doing.  Here are a couple pictures of our trip home...

Ready to go!

It was a stormy day but we had a pretty smooth flight, though longer than scheduled because we had to detour around some weather.  We made it back great though, and got home to Chattanooga around 11pm. We were exhausted, but with only 5 days left of summer break for David, we threw ourselves into our big front porch renovation project.  David and his dad worked all week on it.  Here's the before...

and the after!

And were still working on some landscaping projects...

They did every last bit of work themselves.  I am so proud of them and absolutely love my new, updated porch!  They finished it in the 5 days, and we've just done finishing touches and clean up since then.  The kids started back to school 2 weeks ago now, and we are getting back in the swing of the school routine, homework, etc.  

Asa and Elena are already working hard in their new classes and I am so proud of them.  They are making new friends and enjoying school so far.  It was hard to see them go, as it's so fun having all 4 together, and if you can believe it, it's easier! They are so good and help me so much and play so well with the little boys, it's been an adjustment them being gone.

They're getting the hang of it though...

Jacob is doing so great though!  He had a rocky first couple weeks back as he got an ill-timed virus right after we came home.  His fevers and bad cough scared me, with him being so fresh post-op, but all his labwork and x-rays stayed clear, so we rode out the virus.  He is finally back 100%.  Jake has also really grown up since we returned.  He has become such a big boy, saying goodbye to his "binky"! This was a huge step for him, and wasn't near as difficult as anticipated, especially considering his baby brother still has one and they are laying around all the time.  He has done great with it, and it's great to see his sweet smile uncovered all the time.  He also has pretty much got the potty training thing down now.  He has been great keeping dry for a long time, but couldn't seem to get the #2 part down until the first week of school.  So huge milestone for him and for our whole family as we now are down to just 1 kid in diapers!!!  Here he is celebrating his accomplishment...

Luke is doing well, growing up, albeit against my will! ;)  He is not just walking but running everywhere and climbing on everything.  He is just quietly and systematically getting into everything.  He keeps me on my toes all the time! He is still so happy though and such a joy.  

Though so grown up I still see fleeting glimpses of my baby...

David and I are well.  David is teaching Algebra II this year, and so far really enjoying that new challenge.  I am so happy for him and proud of how hard he has worked to be such a good teacher.  He is also reffing football for the 2nd year, which he really enjoys. I am going back to school to get my Bachelor of Science in Nursing.  I am enrolled in the online program at UTC, really the only option for me, as I don't have time to attend classes!  There is no difference in RN's with ASN or BSN in practice, but it will keep my options open for the future.  It is something I have considered from time to time over the years, but circumstances have brought it to the front of my mind this summer.  It has been a rocky road to this decision, but I am trusting that this is the path I need to take, and that God will bless my efforts.  It is a leap of faith for me, and I am nervous to keep all the balls in the air I am juggling, most especially the precious one of my family.  David has been so supportive of this decision, and I know I could not undertake this if he weren't such a good husband and father.  Please pray for me to be able to have the time I need for my family, as well as be able to meet my work and school obligations.  I am trying to trust and not feel overwhelmed, though I currently do, and I am only wrapping up my 2nd week!  Please pray for all of us as I take this new journey.  Continue to pray for David and the older kids in their schooling, as well as me and the little boys at home.  Pray for Jacob as he grows and that he will continue to stay healthy.  He will have some imaging done here this fall, that we will send to Boston and make decisions on his upcoming care and treatment.  Please pray for healing for him, and stagnant growth of his lesions.  Most of all, pray that we continue to seek and enjoy Today's Miracle.

Saturday, July 26, 2014

All's well and ready to come home!

Thursday was an early morning for us.  We had to leave by 5:30 to make it across town via the train to the hospital for Jacob's procedure, which was the first case of the day.  We got everyone else ready, and essentially pulled him out of bed in his PJ's and put hi in the stroller and went.  He didn't seem to mind, and was just chillaxin in the stroller on the subway!  It was so funny, but at the same time, he looked so grown up...
We got checked in and hung out in preop for a bit, talking with anesthesia, and with our doctor one more time.  Jake just settled right in and watched a show with his brothers and sister. 

It was so neat having them there.  Such a good distraction for him, and for David and I as well.  There was just a lightness for me this time as compared to before.  I'm not sure what it is exactly, but their presence just seems to ease the tension I'm feeling and ease some of the heaviness of those moments of waiting.  Maybe its the normalcy of having all 4 together, I'm not sure.  But either way, it was so great to have my whole little family there together.

It was a long wait though, they put him under a little before 8 and I left him with the doctors, and they weren't finished til almost 12. It was not as good of a report as we hoped for.  The procedure went well, but ended up being much more involved than they hoped and anticipated.  Based on the ultrasound they did at our appointment on Friday, the lesions looked very small on his back.  That finding led us to believe that similarly it would be small in his chest.  And the last treatment in April, there was very little they had to do in his chest, as it all was pretty much sealed from the first treatment in February.  But once they got in there, they found that inside his chest, it the lesions redirected and grew new channels. The lesions reinvaded into his pleura (lung lining) like before, though not as large as the first time.  This was not expected so soon, and was a tough pill to swallow.  This was a sobering reminder of the difficulty in treating Jacob's condition.  The doctor essentially gave the maximum dose of sclerosant to close up these new channels, doing quite a bit of work concentrated on the area in his chest.  Because of this rapid regrowth, he wants to get some imaging in 2-3 months to look at it and decide if we need to treat in the fall, whereas Friday he expected us to be good for a year or so to wait to get a MRI.  But we will do whatever Jacob needs, it was just discouraging.

We got back to see him around 12:30.  There was a little issue when they woke him up initially...he did not wake up well.  He was completely ballistic, pulled his IV out, and they couldn't get him reigned in, so they redosed him with propofol and put him back to sleep.  Got his IV back in and called me back for round 2.  I watched him sleep for a bit before he finally started stirring.

 He woke up great the next time, with me there, his blanket, and most importantly, a binky.  He was awake and talked to me for a few minutes, and went back out.  He required oxygen for a few hours, just like the last times.  He just cannot keep his sats up immediately postop.  They also had to make some fluid adjustments, give him bicarb and lasix for his kidneys like they did after the first treatment, to flush out the high doses of sclerosant used during the surgery.

We were stuck in PACU for a while waiting for a bed.  But I got some good cuddle time with my little man.  He was so brave, I was so proud of him.  He cried very little, but told me when he was hurting or scared.  He asked about his siblings and daddy.  He was such a good boy.  David and I switched off a few times throughout the day.  We finally got a room in the late afternoon which was a relief. He was happy to see Asa and Elena and Luke again.

He was doing so good, but as soon as we got settled in a room he threw up immediately.  He has had problems keeping things down after each surgery, I guess we need to just expect this.  They started him on a scheduled zofran to keep the nausea at bay and get him through the night.

After his IV pain medicine and anti-nausea med, he perked up quickly.  He remembers more than we realized, cause he immediately started asking to go to the playroom.  We had to get them to take his catheter out, but once they did, there was no keeping him down.  It was after 8 and the playroom was closed, but they were kind enough to let us in after hours.  He was so excited and off he went down the hall.

He got right to it playing foosball, and superheroes.  He played for a bit, but tired quickly.  We didn't want to abuse the privilege with them letting us in, so we checked out a couple movies for him and headed back to his room.  By this time everyone was exhausted.  David and the other kids said goodbye for the night and headed back to our rental apartment.  Me and Jake settled in for the night.  He watched a few minutes of a movie and passed out.  They continued dosing him with his pain and nausea meds throughout the night, so he slept soundly.  It was by far the best he has done post op to date.  What a relief to see him get a good nights sleep and be comfortable.

He woke up in the morning feeling pretty good.  Ate a decent breakfast and kept it down.  Did some puzzles, watched a movie, walked to the playroom for a bit.  With him doing so good, I was itching to leave so started rattling the cage a bit.

I got our doctors to agree we could go home, but we still had to wait a couple hours for paperwork, etc.  We killed some time rollin around our floor on some borrowed wheels, which he really enjoyed.

Finally we were ready to go!  David and the kids arrived just about 30 minutes before we left.  So together we got some food, Jacob's prescriptions, and headed home.  We took a different route away from the hospital to the train and stumbled upon this right next door to the hospital...

Harvard Medical School.  Some of the most brilliant minds in the country learning to be doctors.  And Jacob's doctors at BCH are all professors there.  I am so thankful for their commitment to excellence, and learning, always pushing for advancements in medicine.  It is pretty cool that Boston Children's Hospital is sandwiched between 2 buildings...on the left Harvard Medical School, and on the right, the Research building for BCH and Harvard Medicine.  This gives me hope that within these walls, they will continue to search for answers for my son.  Once we got back home, we were all exhausted, and ALL 6 of us took a nap.  We woke up at 8:30 after nearly 4 hours!  Needless to say, we all were up a bit later than normal, but it was so worth it!  We got up this morning feeling much more rested.  Jacob also woke up well, and though a bit slower than normal, seemed to feel pretty good.  We spent a relaxing morning at home, ate lunch, before taking a quick outing over to the campus of Harvard University. It being a Saturday, it was mostly full of tourists, but we did get a quick picture with the statue and touched the toe of John Harvard.

Asa and Elena hanging out at one of Harvard's gates.

We didn't stay gone too long, not wanting to wear Jake out, but he ended up sleeping almost the whole time and didn't seem bothered by the brief outing.

We got back and ate dinner, and decided to end our trip as we began it...across the street at Piers Park. The kids played for about 30 minutes on the playground, and then we headed out to the fields and wrestled around and played.

It was the perfect end to an amazing trip.  From the before our first trip to Boston, we hoped at some point we would be able to have one like this.  The whole family together, and a vacation of sorts.  I wasn't sure how we could make it happen, but it did.  We owe much to many people who helped make this a reality for us, especially our parents for their support, and especially to my dear NICU family who have done so much for us.  I continue to be amazed and humbled for all those who are still touched by our Jacob and have held thought or prayer on his behalf, and for those who have helped lighten the burden.  I am so thankful Asa and Elena got to experience this journey with Jacob, and I am in awe of their love and care for each other.  Though I know we won't likely take another trip like this for a long time, I am so glad for this opportunity, and we wrung the most out of each moment. Though this trip held difficult moments for Jake and for us, it was even during those times, beautiful as we were all in it together. I love my little family, and once again am thankful for the city of Boston, its people, and for all of you who continue to support us on this journey.  Much love from the Casteel's on our last night in Boston.