Questions for you ladies!?!

[Kaitlynn's Mommy]

Hello. Okay so I've got some questions to ask you all! :scared2:thankyou


Have you seen a Genetisit? If so, what do they do?
If you were Breastfeeding, how long after surgery were you able to resume..if ever?
Did your baby hate tummy time or have a hard time rolling over?
When did they finally get full head control?
(dd is 12 weeks and still doesn't have full control, I remember our other two having it by now)
Did your baby seem to hit milestones before surgery?
Did your baby need any physical therarpy after surgery?
If Saggital did they need a helmet at all?
(doc says she won't but???)
If baby has older sibblings, how did they react to surgery? Where did they go while babe was in hospital?


That's all I can think of. I've got most of my other questions answered, but these are one's I can't find many answers too!!!! Thanks ladies!

[craniomommynbaby]

Have you seen a Genetisit? If so, what do they do? Yes, she did a detailed family medical history and then drew blood to send to a lab.
If you were Breastfeeding, how long after surgery were you able to resume..if ever? I resumed the day after the surgery. He slept the first night in the PICU, and then we tried PediaLyte before noon that next day. He kept that down and was eager for more, so we went right to breastfeeding.
Did your baby hate tummy time or have a hard time rolling over? Simon started rolling both ways very quickly, and he loved playing on his tummy and moving around. He started losing skills when he was around 3-4 months old, and then he ended up having therapy starting at 8 months old.
When did they finally get full head control? Simon had pretty good head control at 3 months old, but that was another thing that he went backwards on. The hypotonia (low muscle tone) affected control.
(dd is 12 weeks and still doesn't have full control, I remember our other two having it by now)
Did your baby seem to hit milestones before surgery? Until around 3-4 months old, yes he did.
Did your baby need any physical therarpy after surgery? Yes, he started when he was 8 months old and finished a few months after his first birthday.
If Saggital did they need a helmet at all? Not sagittal and No helmet
(doc says she won't but???)
If baby has older sibblings, how did they react to surgery? Where did they go while babe was in hospital? NA

[jenniferann75]

Have you seen a Genetisit? If so, what do they do? no, we haven't
If you were Breastfeeding, how long after surgery were you able to resume..if ever? Our NS wanted me to nurse asap. Unfortunately Andrew wasn't interested duing the hospital stay. He didn't eat much at all. I pumped at the hospital (they had pumping rooms with hospital grade pumps) and was able to keep up my supply just fine.
Did your baby hate tummy time or have a hard time rolling over? Andrew HATED tummy time. I really think it was because his head was so heavy. In fact he is just now starting to scoot around (backwards). He's 8 1/2 months.
When did they finally get full head control? I don't remember....
(dd is 12 weeks and still doesn't have full control, I remember our other two having it by now)
Did your baby seem to hit milestones before surgery? he did, just didn't do anything on his belly
Did your baby need any physical therarpy after surgery? no
If Saggital did they need a helmet at all?
(doc says she won't but???) no helmet here. I think that a lot depends on the type of surgery
If baby has older sibblings, how did they react to surgery? Where did they go while babe was in hospital? they worried but we kept them updated. They stayed with friends of ours from church and we opted to not have them visit while he was in the hospital. I felt the swelling would really scare them and we were also 2 1/2 hours away.

[sarahob]

Hi Amanda

Love the pictures of your kids. Here are some answers from my experience with Gavin.

Have you seen a Genetisit? If so, what do they do?
We didn't see a genetist. The doctors had no reason to believe that Gavin's cranio was genetic and they were not concerned about any syndromes.

If you were Breastfeeding, how long after surgery were you able to resume..if ever?
Gavin wasn't breastfeeding. I really can't see continuing as being an issue.

Did your baby hate tummy time or have a hard time rolling over?
When did they finally get full head control?
(dd is 12 weeks and still doesn't have full control, I remember our other two having it by now)
Did your baby seem to hit milestones before surgery?
Gavin was slower than his older brother at developing physical milestones but he has been within the normal range. He has done most things late and sometimes I worry that this is related to his cranio but I just think he is different than his brother.

Did your baby need any physical therarpy after surgery?
No

If Saggital did they need a helmet at all?
(doc says she won't but???)
At our 2 week follow up with our ps we were given the option of now doing helmet therapy. Gavin had a total CVR and the ps got a really good shape but his is still narrow at the temples which is why we were given the option of a helmet for further molding. Gavin was fitted for his helmet today and we pick it up on Friday.

If baby has older sibblings, how did they react to surgery? Where did they go while babe was in hospital?
Our older son is 2 1/2. He stayed with grandparents while we were at the hospital. We started telling him about a week before the surgery that Gavin was having surgery and that Mommy and Daddy had to go to the hospital with him for a few days. We also told him that Gavin will have a "boo-boo" on his head. My husband came home on the Friday night to take Blake to soccer (surgery was on Wednesday) so we also reminded him of that. We talked to him on the phone everyday. He was really good at the grandparents. I was really worried he might act out when I got home (I didn't see him for 5 days) but he was really good. He came to visit on the Sunday (the day we came home) was Gavin could open his eyes and wasn't so swollen.

Hope this helps.

[my_angel_kenley_grace]

Hello. Here are my answers for you...

Have you seen a Genetisit? If so, what do they do? Yes. They took a detailed family history and drew blood.
If you were Breastfeeding, how long after surgery were you able to resume..if ever? Within a few hours after surgery (much to my surprise).
Did your baby hate tummy time or have a hard time rolling over? My daughter had surgery early but didn't like tummy time at first.
When did they finally get full head control? Kenley had full head control pretty early. Around 8-9 weeks.
(dd is 12 weeks and still doesn't have full control, I remember our other two having it by now)
Did your baby seem to hit milestones before surgery? Yes. She met all her milestones but again she had surgery at 3 months.
Did your baby need any physical therarpy after surgery? Nopel.
If Saggital did they need a helmet at all? No helmet either and she is doing great!
(doc says she won't but???)
If baby has older sibblings, how did they react to surgery? Where did they go while babe was in hospital? We have another daughter who is 8. She stayed with the Grandparents. She was afraid but we tried our best to reassure her and explain everything.

[mommysbudbud]

Have you seen a Genetisit? If so, what do they do?
Yes, my son ended up having multiple cranio which is a syndrome. We didn't know that until he explained it to us. Blood testing was done. He looked my son over from head to toe, in the mouth even. Took his diaper and all clothes off. Then he asked us several questions.

Did your baby hate tummy time or have a hard time rolling over?
He wasn't too fond of tummy time before surgery but was rolling over already....he HATED tummy time after surgery and did not roll over for 2 months after his surgery. He seemed to have forgot everything. We had to start him with a occupational therapist.

When did they finally get full head control?
Total head control was maybe 3 months later. BUT his head was larger then a 'normal' child because of the way his head was rebuilt. His surgery was at 6 months old.
Did your baby seem to hit milestones before surgery? Yes!
Did your baby need any physical therarpy after surgery? Yes! Occupational Therapy but not physical therapy.
If Saggital did they need a helmet at all? No helmet because his skull and forehead were rebuilt

[Kaitlynn's Mommy]

Thanks ladies, you're answers are so reashuring to me! I'm mainly worried about getting in to the genetisist. We have a niece that is 6 weeks older than Kaitlynn who was just diagnosed friday, with a mild form of Sagittal cranio. She was a quad, and so we don't know if the reason she has it is because of no room, or gentic. Kaitlynn felt cramped in-utero also, seemed she was always in my ribs from the time I could feel her move, and wedged in my pelvis at the same time. So we're just worried that it's something genetic. Before our neice was diagnosed, we didn't have any other babies/children with it before on both sides of our family!

Okay so I know I just ranted there, but thanks again ladies!!!!!!!

[mommysbudbud]

I went into preterm labor at 25 weeks and was only allowed to lay down...was in the hospital until my son was born...55 days later. He was very deep in my pelvisfor a very long time (we could see on all of my ultrasounds) and came out severly bruised on his head and forehead. I can't tell you how guilty I felt for weeks about the bruising then we were told about his cranio and I felt even worse (didn't think it was possible).

Interesting, I had 30+ ultrasounds from week 7 to week 32 and my perinatologist never once picked up on the cranio. But I can see it now, now that I know what to look for.

[Koops]

Have you seen a Genetisit? If so, what do they do?
No.
If you were Breastfeeding, how long after surgery were you able to resume..if ever?
Tried the next day but felt really uncomfortable. Bailey didn't really start eating again until about day 3 (we were in hospital for a week and then more after in seperate accomodation). He was on a drip so was getting fluids. Then when he did start he threw everything up due to the drugs. So after getting something for that he then started feeding again properly and we haven't looked back.

Did your baby hate tummy time or have a hard time rolling over? Hated tummy time and rolls onlt from tummy to back not visa versa. I think he is just happy sitting and playing and content to just go with flow. He is trying to bum shuffle and is reaching forward with his hands to try to crawl but only from sitting. He is 8 months.
When did they finally get full head control? About 4-6 wks I think.
(dd is 12 weeks and still doesn't have full control, I remember our other two having it by now)
Did your baby seem to hit milestones before surgery? Yes
Did your baby need any physical therarpy after surgery? No
If Saggital did they need a helmet at all? No
(doc says she won't but???)
If baby has older sibblings, how did they react to surgery? Where did they go while babe was in hospital? No siblings

[Elizabeth]

Have you seen a Genetisit? If so, what do they do? Blood testing, FULL body exam, complete medical history of my husband and myself.
If you were Breastfeeding, how long after surgery were you able to resume..if ever? we haven't had surgery yet, but the ns wants me to try nursing as soon as Isaac is out of surgery, if he will. She says the sooner they begin nursing, the better they do overall.
Did your baby hate tummy time or have a hard time rolling over? Isaac HATES tummy time. From 2 weeks old until about 3 weeks ago he rolled himself over any time he was on his tummy. Now he has stopped rolling completely.
When did they finally get full head control? Isaac ALMOST has full control...he will be 4 months on the 27th. He also has very little trunk control.
(dd is 12 weeks and still doesn't have full control, I remember our other two having it by now)
Did your baby seem to hit milestones before surgery? He's not hitting all of his milestones on time, but he IS hitting them eventually.
Did your baby need any physical therarpy after surgery? He is in physical and occupational therapy now and both will continue after surgery.
If Saggital did they need a helmet at all? NS hasn't mentioned a helmet at this point, but his saggittal surgery won't be his first surgery anyway, his coronal surgery will.
(doc says she won't but???)
If baby has older sibblings, how did they react to surgery? Where did they go while babe was in hospital? Isaac has a sister who will be 2 1/2 when he has surgery. She will be staying with my mother-in-law, either at our house or hers. On the day OF surgery, she will be with my aunt who lives about 10 minutes from the hospital.

I don't know if I have been any help or not!

Elizabeth