Not the end, only the beginning. (Last Post!)

5:32pm  We had our helmet molding and check up appointments today. They went very well! Auntie Martha came with me since James needed to work and she did a fantastic job helping out- thank you twin!

Dr. Forrest examined Jacob and was very pleased with how things are healing up. The helmet molding went well. Auntie was wonderful at calming both Jacob and myself down! She held Jacob and I distracted him while the orthotist placed a sock and plaster on Jacob's head.  He was so good! Jacob had head measurements taken by a laser and the report back was that at the moment Jacob has an almost perfect head shape! The measurements are extremely precise. It just goes to show how impressive Dr. Forrest's skills are. Our true life hero. The helmet will continue to mold Jacob's head shape and more importantly protect it as the bone hardens. We complete a final fitting and receive the helmet next week.

It was very cathartic returning to Sick Kids and being on the other side now. Such a different and positive visit this time. Martha described Jacob as a "graduate/alumni" today. Very true! That building and the staff in it changed our lives forever. I will never forget this experience.

Thank you for being with us on our journey. We have felt you in spirit the whole way and look forward to each day ahead and to all the good things coming in Jacob's future.

I am including a photo that we took today as a small gift to you all! I am leaving you off on a positive note! We have been so inspired by Jacob's bravery, strength, and spirit. He may be a young soul, but he has incredible courage and resilience. Jacob still has some work to do but we are now well on our way and have been given a new start.


I have learned that no matter how difficult the situation, we are given blessings as gifts to help cope. They are all around us. All you have to do is look, receive, and enjoy!

See you all soon! Have a wonderful night.

Love
Monica

One Week Cranioversary

8:15am One week ago today we were handing Jacob over to the nurse at Sick Kids. I can't believe how far we have come in just a few days. Jacob has healed incredibly quickly and continues to make gains each day! What a strong and enduring baby! He is our little hero! God has provided.

Thank you Baby Whisperer

5:30pm  We had a better night last night. Jacob is learning the skill of sleeping again (anyone who has ever sleep trained knows this is truly a skill they learn if they are not naturally a sleepy baby). I had him on a very strict schedule (via the brilliance of Tracy Hogg- Baby Whisperer) before the surgery in anticipation that it would be thrown off hoping that he would get back on it easier afterwards. So far we are making gains! I got about 3 straight hours of sleep last night before he was up every hour but he settled very quickly each time which is huge progress from the night before. Daytime was challenging but we got some naps in where we could! Tiring work for the both of us!

As you can see, these are small issues we are dealing with at this point! Typical baby stuff.

Jacob is getting stronger each day as well. He is tolerating more tummy time again and almost back where we left off as far as physical strength. He had a brief visit from his big cousin Magdalene today. He was watching (and learning) as she showed off her solid food eating skills! (Next month for us!)

I have had some questions from some of you about his head shape. It has certainly improved. Very noticeable difference! He has a nice round head (instead of elongated). His forehead no longer protrudes and the back of his head slopes downwards instead of out. Helmet therapy will help the head shape properly as he grows as well. Dr. Forrest is our true life hero. His style of surgery is more invasive than simply removing the fused suture, but well worth it as his success rate is phenomenal. Unbelievable what he does!

Enjoy your evening everyone! :)

Sleep? What's that again? ;P

3:00pm  We are back to the newborn days and starting from scratch with the sleep routine. They warned us about this in the hospital. James has been great about sharing the night shift with me which has really helped. I am hoping that Jacob will get back on track soon!

Otherwise Jacob is doing very well. His swelling has gone down significantly again. He looks more and more like his old self. His incision (ear to ear zigzag) looks good and we are caring for it as best we can. He is eating much better and when he wakes up from a nap and is fed, he is his playful old self until he gets tired again.

It worked out perfectly that we were discharged Friday and James and I could just have the weekend to ourselves and to work together to sort Jacob out and have a quiet home. At this point we just need time.

Thank you again for all the food! Cooking is not something we have energy reserves for so it is wonderful to be able to heat up great meals so quickly!
 
Exhausted, but happy to slowly be getting my boy back!

I will continue to post to let you know how things are going and how Jacob's checkup next week goes. Thank you to everyone for following!

Now....maybe I can sneak in a short nap??? The monitor seems to be quiet right now! :)

(Below is a photo from the hospital. I thought you might like to see how beautiful and cozy the room was. Sick Kids really got it right!)

Sleep, eat, sleep, eat

3:46pm  After a so-so night we are all just taking it easy today. Jacob is working hard at eating more and more each feed and getting back onto his routine slowly. His stomach was very very upset last night and we made the decision to try going without pain meds since he wasn't keeping them down anyways. I am happy to report that Jacob's last pain med was at 11pm last night and he is doing ok today! He is a little cranky, but I believe its from the major shift in schedule.

The swelling is also significantly reduced. He looks like our little boy once again!

We have been slowly getting to all the surprises left for us here at home. It is so nice to be cheered by all of the cards and messages and to be able to focus on recovery vs. grocery shopping and meal prep. Thank you everyone for taking such great care of us!

We even received 96 rolls of toilet paper from Adrienne (LOL, made me laugh!), and had our lawncare and weeding done by Kendra (38 weeks pregnant) and Josh! Those are just a FEW of the many wonderful gifts we received. Thank you to EVERYONE!





I hope everyone enjoys this summer weather and has a relaxing weekend!

We will never forget your generosity and support.

Love!
Monica

Below you will find the facebook update from Kathy who ran 7 hrs 52 mins and dedicated a mile to Jacob.

There is no place like home!

8:41pm- We made it home! We are blown away with all of the gifts, food, cards, household tasks completed, and messages. What a wonderful surprise to return to! We are so incredibly moved. There are no words to describe how grateful we are.

Traffic made our trip home a long one (4.5 hours long). Jacob did ok. James did a great job driving.

Upon arrival home Jacob's face lit up. He is clearly very happy to be home. He was kicking and smiling, blowing bubbles, and he even let out a few giggles. We received some balloons and they were the highlight for him. Wow, environment really makes a difference for spirit! Right now he is up to his old antics giving us a hard time with bedtime routine. Good old Jacob! So wonderful to be back home and seeing him so happy.




I better head to bed. Its been another long day for James and I. We both took turns on night shift and have been up for too many hours to count. Hopefully Jacob sleeps ok tonight and we can catch up on sleep.




Good night everyone! Sweet dreams! Thank you for welcoming us home with so much love!
xoxo

Finally over the recovery "hump"

11:00am  A great morning so far. Jacob was playful and giving me more smiles. Had some bowel and feeding issues but we have cleared those up now. Bloodwork was done again and his hemoglobin looks good meaning ........ drumroll please......... discharge today! As long as the afternoon feed goes well we can go. Today was the
 first time Jacob nursed since the morning of the surgery. It felt so good to have him feeding normally again! He only still eats half of his usual but its a good start.
Swelling is still significant but slowly improving now.
Pain is ok for now and fever has been gone since last night.
His new nurse today is amazing. "So this is the little guy I keep hearing about....its so rare that BOTH eyes stay open and dont swell shut!"
I am a proud momma!
Next steps will be helmet moulding and checkup next Wed, then back the week after to pick up the helmet. Helmet therapy will last 4 months.

Today I feel is a new beginning. Finally I am looking forward to the months to come. The fear, saddness, and anxiety have been replaced with happiness, excitement, and hope. We will still have many challenges at home, but I know that Jacob will make ith through.

The lesson I have learned is that anything in life is possible. With a little hard work and surrounding yourself with the right people (supportive loved ones, excellent medical team), and a lot of faith, you can make miracles happen!

Your love means the world to us. I will make a few more posts once we are home. Hopefully  the next few can be made in person soon!

Busy Day

6:30pm  We got a lot done today. Head drain came out (phew), CT scan completed (no anaesthetic this time!), and blood drawn. Jacob was a trooper. His left eye got very swollen but he can still open it. The swelling seems to be holding which is a good sign. Hopefully from here the swelling will start to decrease.
We got some playfol kicks this evening and two slight slight smiles. He is slowly coming around.
Time tomeat something and then I am taking a nap. Ive been up since 2am at this point.
Docs now say discharge probably Sat.

Dear Jacob

Dear Jacob,

You are too young to read this letter now, but I am writing this so that you may understand a powerful event that occured while you were only months old. By now you have heard about your big surgery and must have gotten to know your scar quite well. I hope it is hidden under a thick head of dark brown hair, just like your daddy's.

On June 18th, 2013 you underwent a strip craniectomy to repair your sagittal craniosynostosis. It was a huge surgery (5 hours long) in Toronto. It was a very difficult thing for you to go through and for your parents to endur. However, this extremely painful experience was also one of the most positive in the life of our family. How could this be?

On the days leading up to and during the surgery and recovery you had a huge outpouring of love coming your way. Prayers spoken by family, friends, and groups of people you have never met and some who don't even know you and will never meet you. Prayers and well wishes coming from Poland, Ireland, the US, London, and various small prayers groups througout. You had one mother running a mile for you, another caring friend devoting her powerful yoga practice to you, grandparents who financially supported your mommy and daddy so that they could better take care of you, an auntie who upon hearing we forgot your favorite glowbug ran to our house and express mailed it from your crib to your hospital bed, and so many more kind gestures coming your way. Your mommy and daddy were protected from fear and feelings of despair by contantly receiving facebook messages, emails, texts, and posts on your blog of love and encouragement. I could list many more wonderful things that people did for you and fill a book with them.

So my heart, my love, please please know that that scar on your head will be forever a symbol of your enduring strength yes. However more importantly, let it remind you of all the love that is out there and that was overwhelmingly directed for you at that difficult time from so many people. Let it be a reminder of how truely loved you are always. Please also remember to give back to those around you, even those you don't know. No matter how small the kindness it is always noticed.

Love your mommy, daddy, family, friends, and most importantly God!

Miracle Baby

7:45am  Today is the day that the swelling peaks.(in the morning)...the moment I have been dreading the most. The majority of the babies get so swollen that their eyes swell shut. I have had a lot of anxiety about that. I have been joking with tuhe nurses that "my kid will be one of the few exceptions, you will see..." My caring nurse got worried and even brought me photos of children with their eyes swollen to persuade me away from my denial that this will happen.

Well....its morning now and Jacob can still open his eyes!

"Hes a miracle baby!" said the nurse.

God is so good.

Dr. Forrest was in this morning and said things look very good. He agreed that the eyes look really good and that by now they are typically swollen. CT scan will be today. AND if Jacob does ok there is a chance we might get discharged tomorrow.

We still have some work to do though. Jacob is not really eating. Also, still no smiles.

One step at a time. One small victory at a time...

Working hard

7pm  Jacob has been working hard all day with his recovery. The nurses are amazing keeping his pain under control. He has had some moments where he acts like himself by reaching and looking but for now they are short. Swelling is coming on now, tomorrow it will peak. Each day brings us closer and closer to having this all behind us.

So far so good!

11am   Dr. Forrest removed the head dressing and told us that everything looks as it should. They have also removed a few lines (IVs etc) which is great. Still have some lines which will be coming out in the next few days.
The incision looks good as well. Jacob will be able to show off his battle scar when he is older.
Right now both my boys are sleeping. The storm has calmed for now. Enjoying this peaceful moment.

New Day

7:40am. Had a good night. Jacob is feeding well. Swelling is starting but only a little. We got transferred out of ICU on to the floor. Jacob looked around on the ride up to the floor. Still no smiles but he is comfortable.

Just settling in and getting breakfast now. CT might be later as well as head dressing removal.

Recovery time

7:34. Nurse shift change so we have to leave the room. Grabbing dinner.....you guessed it, chicken fingers! Jacob looks better than I expected so I was emotional but so relieved when I saw him. God is good!

He is groggy from the morphine and cranking a little but we are able to calm him easily. At this point it's not pain but hunger. The nurses are impressed with his appetite and slowly letting us give him more breast milk. I feel better knowing he is getting my milk.

The nurses put on soft lion king music and jacob seems to relax to it. I also find it very calming! Otherwise he is relaxing and sucking on his soother which they have been good about giving to him.

Thanks again for all the love! We certainly feel it and it's keeping us strong!

Xoxo. Until tomorrow!

Be still my heart

1:10 just spoke with the surgeo. Jacob is in recovery now. Everything went very well. The surgeon is pleased with the corrections he made. They also only used my blood which means they didn't need extra ( not sure exactly how much he lost). We see him in ICU in one hour. Just grabbing some food at the moment.

Lord give me strength for the moment when I get to see him! Now James and I switch... He is the calm one and I am the nervous nelly.

Here we go

Today we learned the true meaning of the word surrender.

Jacob went in at about 8am. He was allowed to keep his soother which made me so relieved. He did great despite being hungry and tired. We had a big family hug before the nurse took him away.

"We will take good care of him"

I trust this team completely. Even this morning we met with the docs and they are able to answer all my questions so well and with such kindness.

9:22 we got word that they started and he is doing great.

I will keep posting as able.

God is with us!

More Gifts

We arrived in Toronto safe and sound! What a gorgeous day. Today we received so many good things:

1) Genetics Appt- They physically examined Jacob and took a family history to determine if the sagittal synostosis is an isolated incident or part of a syndrome. They gave Jacob a clean bill of health and assured us that it is isolated and not part of a syndrome. :) 
Despite really needing a nap Jacob was the biggest flirt! The doctor had to apologize that she was laughing so much since Jacob was giving her smiles, kicks, and giggles. He was really putting on the charm.

2) Pack and Play- We forgot to pack this for Jacob to sleep in tonight! I was just imagining Jacob rolling around on the floor or off of one of the hotel beds. We were so relieved when the hotel was able to provide us with one! Phew!

3) Bouncy Bed- James was bouncing Jacob all evening on the bed. Jacob was over the moon with very loud giggles. Our bed doesn't bounce as well at home!

4) Sleep- Little man is fast asleep at the moment in his borrowed pack and play. He had a good feed and is right on usual schedule at the moment. We are so lucky to have such a good sleeper. All that hard work training him on this schedule is paying off!

James and I are going to relax now and prepare for tomorrow. Very hard to believe the surgery is only a few hours away at this point. Feeling numb at the moment which is a good thing.

We are positively overwhelmed with everyone's emails, comments, and texts. They mean so much! Thank you again!

See you in the morning...

My bags are packed....

Running around trying to pack myself, my baby.....and Jacob! :)

Slept very well last night. I am a 'doer' so getting things going is much easier than the waiting game. We are leaving very soon and will come back a changed and stronger family.

Speaking of strength, I have been so inspired by another cranio mom Kathy Sebright. Her son has multiple issues (craniosynostosis being one of them) and she is running to raise awareness about cranio. A bit of her story:

"Emmett's (virtual) Endurance Event - June 20, 2012. For my son's first surgery (to break apart his skull and put it back together correctly due to a birth defect of the skull), I ran on a treadmill in the hospital until he was out of surgery safely. I ran non-stop for 7 hrs and 26 minutes and was virtually joined by over 1,000 people in 45 states and 13 countries. The outpouring of support was the most amazing thing I have ever witnessed, let alone been a part of!"

Kathy is running again this year on June 20th and she is dedicating miles to children undergoing surgery in June. She will be dedicating a mile to Jacob too!

Such an inspiration!

http://www.teampriorityhealth.com/author/ksebright/

http://www.facebook.com/teamemmetts

Comments

Thank you so much to Erin and Martha for posting comments so far! I have changed the settings so that if people would like to post comments (please do!) then you can without signing in. Just select "name/URL" (you don't need to provide a URL) when you post.
Thank you!

God's Gifts

Whenever I experience difficult times I notice there is always something there to help me along. Call it what you want, but I strongly believe that God gives us the tools we need to deal with difficult situations. You just have to look for them and use them!

As the day of the surgery approaches the weight of the situation gets heavier on us. However, we have received such a gift of love from all of you! We have been so blessed and overwhelmed by all of the support and prayers from everyone. Each kindness lifts our spirits.

Thank you so much!

Intro

Hello Friends and Family,

This is a place where I will be posting updates on Jacob. Thank you all for your support, encouragement, gifts, and love! Everything you have done has made this whole process a little less painful and we are so grateful for that.

This blog won't be anything fancy. It is intended to provide everyone with accessible updates instead of mass texting or emailing which may not be the most ideal way to communicate with everyone.

I may also share medical details and my own personal thoughts so be forewarned! I have Polish blood which means that I have the "brutal honesty" gene. :)

To start I will review the details as many of you have been asking:

Monday June 17th- We leave for Toronto. We have a medical appointment at 3pm. Checking into a hotel.

Tuesday June 18th- Admit at 6am. Surgery scheduled for 8am. Surgery will take 5 hours. Once complete Jacob goes to PICU and then spends the night in ICU. The plan is that the next morning once he is doing ok he will get transferred onto the floor (inpatient plastics).

Today we are enjoying a family day. Jacob is practicing making "thhh" sounds and giving us lots of playful squeals, kicks, and rolls! James is currently napping and I am due for one too!

I will update as often as I can.

Love Monica