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View Full Version : 1 month post-op...sorry I've been MIA...



skinny237
01-04-2011, 10:17 AM
Not sure if anyone missed me but I took a few weeks off from here just to clear my head. Hunter is doing amazingly well. The recovery from his surgery was definitely rough the first few days. When we got home, he wasn't sleeping or eating. We expected him not to sleep much, but he just kept moaning this sad, sad cry. It broke my heart. I also didn't realize that he wouldn't have much of an appetite. He wouldn't drink his bottle at all. I think something about the sucking must have caused him pain. I started letting him drink water straight from a water bottle and he loved it. We also fed him all of his favorite foods (lol, it's funny that a 7mo has favorite foods). I think his (twin) brother was an important part of his recovery. After we got home from the hospital, Georgie was the only person who could make Hunter smile. He put Hunter in the jumparoo next to Georgie in the exersaucer-----huge smiles. It was adorable and made me cry. Slowly, Hunter started coming back to us more and more.
His incision is all healed at this point and his hair is growing back. His head looks a little bumpy still but I know that is expected. Of course, two weeks ago he fell out of his swing (he pushed off and fell out backwards). He hit his head hard on the radiator. Naturally, I freaked out and rushed him to the pediatrician, who said he was fine. I also called the NS and he told me not to worry. I think I will still worry about Hunter's head for the rest of my life. Hunter goes back to the NS for another follow up on Friday. His twin also has his own head issues and just got a helmet. He also goes for physical therapy but thank god he won't need the surgery. Back in September, I had never even heard of ANY of this kind of stuff....how quickly you become an "expert."

A few things for those of u getting ready for the surgery:

---Find out if your hospital has a Ronald McDonald House. That place is AMAZING! I can't stress enough how much being able to stay there helped us get through the surgery. It's impossible for you to sit at your little one's bedside the entire time. U need a bit of a break too. It was great to have a place to shower, sleep for a few hours (in a bed----not just a chair or pull-out bed in the hospital!) and get food. What an unbelievable charity!!!! If your hospital doesn't have one, try to stay as close to the hosital as possible.

---I know everyone says this, but the day AFTER the surgery is MUCH WORSE than the day of the surgery. I can't stress this enough. We thought we were prepared for it, but we were not. I don't think there's anything u CAN do to prepare for it. Everyone told us that we would ask ourselves why we did this to our baby. We kept thinking we made a terrible mistake and would never get our baby back. We both just kept sobbing at the hospital----in a way mourning our baby, thinking he was gone forever. He came back to us though and your baby will too.

---Your babymay look VERY different. Everyone says this, but I don't think u can ever be prepared for this. When we got to go into the recovery room after the surgery, I walked right past Hunter's crib. I had to ask a nurse where he was! She pointed to his crib. I kept looking at him, thinking, "Hmmm...is that really Hunter?" The difference is immediately noticeable. He really looked THAT different.

---Every recovery is different. Everyone said that their baby was only in the ICU for 1 night. Hunter was there for 3 nights. Most people get to hold their babies the day of or the day after the surgery. We didn't get to hold him for almost 3 days. Some babies recover quicker than others!

---If friends/ family ask u if there's anything they can do for you.....talk to them about FOOD! Our friends, family and even the staff from the boys daycare had food delivered to us at the hospital and to our house when we got home. When u r so focused on your baby's recovery, sometimes u forget to take time to eat. U need to eat and take care of yourself too! Having dinner delivered to us once we got home was great! The door bell would ring at 6pm w/ different meals for us everynight. It was a lifesaver!


I am sorry to be writing a book! For those of you just starting this journey, trust that you and your little one will get through it. It's such an emotional roller-coaster. I finally feel at ease. This site has been so wonderful. Thank you to everyone. Obviously this journery isn't over, but it's a wonderful feeling to be on the other side. Hopefully I'll be able to help some of u just starting out get through this too.

:hugg

Janet
01-04-2011, 10:25 AM
You have given some great advice. :hugg I'm sorry that Hunter had a rough time. I'm so glad that his brother has helped with the recovery....how sweet, I got a tear in my eye when you mentioned about Georgie getting Hunter to smile :adore

The only time I left Fiona's room was to eat, and even then, it was for 15 minutes max.....I should have gone out and got some fresh air, I know it would have done a world of good. So I agree that sometimes Momma's need a break.

Carmen77
01-04-2011, 10:25 AM
So glad your back!! Missed seeing your beautiful boys Avatar, and you of course!! LOL!!!

I'm glad Hunter is doing so good!!! Thank you for the update!!

G2sMama
01-04-2011, 04:53 PM
I'm with Janet... the story about Georgie & Hunter made my heart sing!! What a huge blessing that they are so close. I'm glad he's healing up and doing well!

jjmc123
01-04-2011, 06:32 PM
That is very good advice you posted. I didn't pick Logan up until day 3. I was petrified to do it earlier.

QueenB
01-05-2011, 07:48 AM
Great advice. I agree with all of it. Especially the Ronald McDonald house. Our hospitial had a similar place and we were offered it at the last minute. I almost felt guilty accepting but soooo glad we did. It was so nice to walk accross the street and have a shower etc... It really does help to give you a boost.
Also the "what did we do to our baby" was huge, especially after getting home from the hospital for us. It took a while for the swelling and our baby to come back.
Zane also was in the PICU for more than a day. Actually 5 days (the entire time). And yes, Food was nice to have brought to you. We had lots of people ask, but you really don't know until your living it. So I would definelty agree if anyone ask, What can we do?? Tell them food especially the days following surgery. It's the last thing on your mind at the time but you do need to eat to be there for your baby.
Once again, great advice. It really hit home and brought back those memories. So glad all is going well for your little one and you are safely on the other side.

andrews mommy
01-05-2011, 11:08 AM
I missed you!!!!! I was actually just thinking about you and then saw this..anyway, GREAT advice!! The what did i do was the worst for us and it ate at me for weeks. But the moment i heard my baby moan and scream i could have died! Never felt so guilty but i knew deep down that there was no other option. We didn't have PICU experience they don't do that here but i'm sorry it was 3 days before you could hold him. Andrew was practically thrown in my arms about 2 hrs after we saw him. He didn't like being moved but those little hands were gripping me so tight, he was scared..it's definitely not easy. I'm so glad Hunters doing well! How are you doing? Hopefully things are getting calmer. Hugs you're such a good mama!!

BrendansMummy
01-05-2011, 03:07 PM
So glad hunter is doing well :hugg

*Jessica*
01-05-2011, 04:32 PM
Hey Jenn! Welcome back! I am glad that you have your Hunter back. You really gave great advice. That is the kind of info that people forget to share and new folks may not even know to ask. Great job momma!:heartbeat Jeffrey was in the PICU forever. I think about 5 days. He had a low grade temp maybe 99.5 to 100ish. I knew it was just due to the surgery and swelling, but they wanted to be safe and keep an eye on him all of the time. Better safe than sorry, but WOW you should see our hospital bill for 8 days in the hospital! LOL!

Anyway, totally got off track sorry, I am glad to 'see' you again and I think we would all LOVE to see an 'after' pic!

*jules*
01-05-2011, 10:20 PM
thanks for the update. glad to hear that all went well and Hunter is you're smiling little boy once again. you've given some great advice and I know our moms who are awaiting surgery will really appreciate it :)

brynnsmom
01-07-2011, 05:31 PM
Thanks for the great advice. We have surgery coming up in Feb. and I will take all the advice and wisdom that I can get:)

skinny237
01-10-2011, 09:08 AM
Here's a before and after pic. The "before" pic doesn't show how noticeable the ridge and trig was. In person, the difference is unbelievable!
http://craniokids.org/support/C:\Documents and Settings\jennifer.lang\Desktop\1104101713 EDIT.JPGhttp://craniokids.org/support/C:\Documents and Settings\jennifer.lang\My Documents\My Pictures\Jan 2010\Jan 2010 085.jpg

ETA: PICS IN ALBUM----can't get them to post!!!!

*jules*
01-10-2011, 10:32 AM
thanks for sharing a pic. I'd love to see an "after" from a birds eye view. I'm always amazed at the dramatic change surgery makes :) he looks great and it'll only get better from here!