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!