Jack's Journey with Craniosynostosis

I will praise You in this storm...

I am journaling Jack's craniosynostenosis journey so family and friends can see his progress and also so anyone else who has to deal with craniosynostosis will hopefully benefit from reading this.  I wrote a little each day while we were at the hospital  and then added to it some, so it's pretty long!  I was debating which pictures to add but wanted to document this whole journey so there are a few of Jack on the vent so if this bothers you, you may not want to read.  When we found out Jack had craniosynostosis we were terrified but did find some comfort in reading about other peoples journeys with Craniosynostosis so hopefully now someone can find comfort from our story. 

9/13/2012-Our newest blessing is here!  Jack Steven Bernth is born at 2:25 pm! 9 pounds, 6 oz, 21 in. long!  He is so beautiful!!  10 fingers, 10 toes, and we are told he is a healthy baby boy!!  The only thing that stood out was the head measurement:  15 3/4 in...

                                                     
9/14/2012-our journey begins.  Jack is 1 day old and the Pediatrician says she can't feel a soft spot, feels a small ridge in the back, and his head is still too molded for being 24 hrs. post delivery so she decides to call in the Maxillofacial team to see him.  We meet with one of the Maxillo residents and he feels certain Jack has craniosynostosis but wants us to meet the head Dr. and the Neurosurgeon to have it confirmed.  We are also told his collarbone was broken during delivery and they think he may have paralysis on the left side and we are being referred to Shriners!  What a difference 24 hours makes!  Our excitement and joy has now turned to overwhelming fear.  After meeting with the Pediatrician he confirms there is a break in the collarbone but it will heal quickly and praise God, there is no paralysis!  We can breathe...

9/19-we meet Dr. Ghali and his team (best group ever!!!!).  The last thing we wanted to do was take our 6 day old to meet with a  team of  Drs. but thankfully they were local and we didn't have to travel. Dr. Ghali says Jack may not have craniosynostosis after all and the bones may just be overlapping and would resolve on their own but wants a CT scan to see for certain.

headed to meet the Drs.

                                
After having a CT scan when Jack was 2 weeks old and again when he was 3 months old, it is confirmed on 12/26  that Jack's sagital suture is fused and he will need surgery to correct it.  Surgery date...Monday, January 21, 2013.

We were filled with fear, anxiety, sadness, and confusion but we knew we were not on this journey alone.  God knew we would have to be on this journey way before we knew so we just had to put our trust and faith in Him and know that He had our sweet baby Jack in the palm on his hand. Prayers were already being answered.  Jack had 2 CT scans and for both scans he didn't have to receive IV sedation.  You have to lay EXTREMLY still so the majority of the time, children, especially babies, have to be sedated but Jack didn't!!  We were also blessed by the most amazing support system. Family, friends, our church family. We knew we were surrounded in prayer. Thanks to my friend Lisa, she introduced me to a friend of hers who was on this same journey last year.  Her baby had the same suture fused and used the same surgeons as Jack. Although the Drs. and nurses were wonderful, it was so nice having another Mom to talk to who had been through this before.  What a blessing she has been not only to me but to my whole family!

Jack turns 4 months old.  Such a big month ahead for this sweet baby!

                                      

1/18-pre-register for surgery and Jack's blood draw.  It's really becoming "real" now!  They stuck him twice in his head and once in his arm.  That was so hard to watch.  It's so hard to see your child hurting and not able to do anything about it but once it was over, Jack was smiling and happy!

day before surgery, after church

sweet brothers

                                                                

happy baby after his babefore the big day! (I went a little crazy with pictures the night before surgery.)

                             
1/21-surgery day!  I was able to nurse Jack at 1:30 and that was his last feeding for 2 days.  We arrived at the hospital at 5:30 am to register and then wait, wait, wait.  Jack really did great and didn't fuss too much.  Several Drs. came in to talk to us and we signed several papers.  Two nurse anesthetist came in and asked if they could pray with us.  That was so comforting and we will always remember them.  The surgery nurse brought a gown to us and told us to put Jack in it and she would be back soon to take him.    Giving Jack to the OR nurse was definitely the hardest thing I had ever done.  I knew it would be tough and it definitely was.  Of course Jack had a big smile on his face and was looking at us with his big blue eyes.  After the nurse left, we just cried and cried.  Then the long wait began.  Our Pastor, family,  and several friends visited and that helped pass the time.  They shaved Jack's head in the OR and a nurse brought us the bag of hair to keep for his first haircut. The first incision was made at 8:58 am.  We received updates every hour and once the Neurosurgeon finished her part, she talked to us and gave us a good report. We knew the surgery was halfway over! The Maxillofacial team started and finished the surgery .  We received a call that they were closing him and to head to picu waiting area.  Surgery was expected to take 6 hrs. but ended up taking less!!

5:30 am waiting to register.

                                  

sweet baby boy has no clue.

                                  

Every time the elevator doors opened, I raced to see if it was Jack and it finally was! We were only able to get a quick glimpse of him as they wheeled him past us and into picu but I was just so relieved that surgery was over and he was ok. We waited a little longer and the sweetest nurse, Tiffany, came to get us and said we could see him! Seeing him for the first time was very scary. I gave away a smiling, happy baby and was now staring at a very pale baby, head wrapped, tubes and wires all over him, and a machine breathing for him.

so scary to see but so thankful this is only temporary.

                                                   
 He looked so small in that big metal crib. I started shaking and really thought I was going to have a panic attack! The nurse explained everything and so kindly answered our million questions. The Drs. said he did great and as long as everything goes well during the night and both CT scans are clear then they will take him off the vent in the morning. Rob and I were both able to sleep in the room and actually was able to get a little sleep. We were just so exhausted mentally and physically that we probably could have slept anywhere! Jack had 2 CT scans that evening and praise God, they were both clear. Jack did start sounding a little congested and his temp. went up a little but once again, praise God because an infection didn't start and with the antibiotics and a few visits from respiratory therapy, he was fine.


1/22-Vent comes out!!  Rob and I had to leave the room while they extibated him but that didn't take long.  When we got back in the room, the tube was out and they had him laying on his belly so the "gunk" in his chest would drain.  I was scared of what Jack would do when his sedation would ware off.  I just didn't want him screaming from pain because they didn't want to give him any pain meds until he woke up from the sedation.  It took a while but he slowly started waking up.  He would wake up, move his arms and legs, cry a little and then go right back to sleep.  The nurse said the next time he woke up, I could hold him!  He woke up again and she placed him in my arms and it was the greatest thing ever!
                                                   
 I was just so thankful that I could hold my baby again.  It was very overwhelming and a little scary holding him because he had so many tubes and a drain that you had to be careful with.  They wanted him to start with Pedialyte before I nursed him but he refused the Pedialyte so they told me I could go ahead and nurse.  I remember how excited I was when Jack was  newborn and he latched on for the first time.  That excitement happened again when he latched after his surgery.  It was then that I really thought he was ok and we are moving in the right direction.  That night the Dr. removed his bandage.  I was worried how it would handle seeing his head for the first time like but it wasn't as bad as we thought it would be.  His head was shaved and he did have the incision from ear to ear but he was ok and  on the road to recovery!  Jack was so happy to have the bandage off!  He did have to receive some more blood since his blood levels were borderline low but he just needed a little and they still had direct donor blood so he was able to use that. He was receiving pain meds every 4 hours.  and as long as he was receiving those, he was content.  I was nervous he wouldn't sleep much that night since he was off of the sedation but he did! 


night of the 22nd.  Dr. just took off the bandage. 

                               

1/23-this the first day that Jack started looking like himself again. He was still very lethargic but would open his eyes some and would smile a little sometimes too.  Poor baby is so tired of people messing with him.  The Dr. took out the drain from his head tonight and Jack cried when she did that but it was wonderful having one less line attached to him.  They tried taking him off of the oxygen that morning but his levels would drop a little so they had to start the oxygen again and will try weaning him again tonight.  They took him off the oxygen! He was so happy to have the nasal cannula off of his face! His levels look good and they say he is doing exceptionally well and as long as that continues then we can go home tomorrow!!!


starting to look like Jack again!!!

:)

                          

1/24-we are going home!!!  Although the nurses and Drs. have been wonderful, we are so excited to go home and see Brendan!  The nurse took out the rest of Jack' IVs and his central line. I am a little nervous about taking him home but the excitement definitely outweighs the nervousness.  What if his oxygen levels drop again?  What if he starts bleeding?  Thank goodness my Mom used to be a Pedi nurse!  :) 

Going Home!!!!!

When we pre-registered, the Dr. gave us the rx for pain meds and antibiotic to take when he gets home but I accidentally threw it away.  Thankfully we had the Dr's. cell # and she called the meds in for us.  Jack took a very long nap! He fell asleep on the way home from the hospital and slept in his car seat for a couple of hrs.  He has been pretty lethargic all day but I guess that is to be expected.  Brendan saw Jack for the first time and he was scared of him so that was sad.  Jack has a big, red, puffy incision on his head ans although it is healing nicely and will eventually get to where it is barely noticeable, it is raised and red right now so it is quite intimidating for a 4 year old.

1/25-Jack slept so good last night!  I put him to bed at 7:30, he woke at 4 to eat, and then slept  until 11:30 AM!!!!!!!  We checked on him a million times and he was breathing so we just let him keep sleeping.  His smiles are coming back, slowly but surely!!!  Oh how I have missed those big, toothless smiles.  His incision is healing nicely.  The incision is ear to ear and the left side looks great but there are a few spots on the right side that is still puffy but we were told it will take a while for the swelling to go down.  Each day Jack is getting better and we are so thankful!!

1/26-he is laughing again!!!!!!!!!

1/29-Jack rolled over!!  He wasn't wanting to roll over and would only keep his head to one side while he was lying flat but now he will move his head both ways and roll over!  Besides the scar on his head, Jack is back and is as happy as ever!  We are just amazed and in awe of how well Jack is doing.  One week ago he wasn't even breathing on his own and today he is talking more than ever, smiling, and so happy!  Glory to God!!

1/30-first outing since the surgery. Since Jack's soft spot was fused, they created a really big soft spot to ensure there wouldn't be premature fusing again so because of that we need to be extra cautious with him for a while.  We were all ready to get some fresh air so we went to dinner and it was nice to get out for a bit.

1/31-post-op appt.  He is doing awesome!!  The Drs. were thrilled with how well he is doing!  They said he still has a lot of swelling but that will gradually go down.  We are all just amazed at how well he is doing!  He isn't sleeping very well.  He slept awesome before surgery but now is sometimes up every 3 hours and not napping but I think that is a combination of all of the medicine he received while at the hospital and he is teething now too. We have an appointment next week for Jack to get a post-op scan of his head so he can get a helmet.  The helmet is used for protection but mainly to help the head grow into a normal shape.  It looks great now, the surgery corrected a LOT but the helmet will do even more.  Since their heads are growing so quickly, he shouldn't need to wear the helmet for more than a few months and then he will have a perfect little head!  :)  Pretty amazing that a special helmet can do so much!  We are a little nervous about the comments we will receive but Jack won't remember anything and we can just use this as a way to educate those who are ignorant about it all.

2/6-scanned for helmet.  The scan is so easy, nothing compared to the CT.  We ordered the helmet and it will be here in 2 weeks.   Jack's incision is healing so well and some of the scab and Dermabond is starting to come off.  There was an area on the left side that was still puffy but that has really gone down for the most part.  Jack is just doing so well and we are in awe!! 

Jack will be 3 weeks post op on Monday and looking back, I just think what a journey it has been.  This has definitely been such a scary and overwhelming time but the biggest hurdle has been crossed and now he just has to wear the helmet for a few months.  He is sleeping much better now too!

Jack is now 1 month, 6 days postop!  He is doing soooooo well!  The Dermabond from his incision is mostly off and the scar looks great.  He got his helmet last week and that is still an adjustment. The first few days when we would put it on him he would just look at us and cry so that of course was sad but he is getting used to it a little more each day and doesn't cry anymore.  It is big and bulky so holding him and nursing is uncomfortable but it's getting a little easier each day and it is molding his head the way it should be so we are grateful!  We met with Dr. Ghali for a check-up this afternoon and then met with the helmet people after and they are both thrilled with his progress! Dr. Ghali, Notorianni, and Dr. Ghali's team have been a Heaven sent.  Not only are they amazing Drs. but they  have also been so compassionate and encouraging to us during this scary journey. We couldn't have asked for a better group of Drs.

Such a happy baby!

Jack is 5 months old now!  We are so thankful that we are passed the 4th month.  What a tough month that was but we are passed it and it couldn't have gone any smoother.  Jack went for his 4 month appt. last week and didn't even cry when he got his shots.  After everything he has been through, shots are nothing for him!  He is such a happy baby and I am constantly amazed by him.  He has been through more in the first 5 months of his life than most people go through their entire life.  Such a tough little guy!

                           
Thank you again to everyone who has kept Jack in your thoughts and prayers.  The only way Jack has done so well is because of answered prayers!  What an awesome God we serve! Words can't express how grateful we are for each of you and for your support! 

pre surgery



1 month, 9 days post surgery.  Already such a huge difference!!